like a shark

Girl With the Long Blonde Hair

2010-07-24T11:35:00.001-07:00

Hi.

Remember me?

Now, don't look at me like that. I know, I know. You're hurt. I haven't written. We didn't break up. I've just been...present.

Sort of in my life and not just observing it all the time.

You feel me?

I knew you would. You're good like that.

How are things?

We're good around here.

Summer has been eventful.

Some of you received a desperate missive from me, asking for prayers as Miss M started a performing arts day camp. A completely-NT-no-extra-help-let's-throw-her-in-there-and-see-what-happens camp.

Terrifying, yes.

Summer is always that time where we measure up to where she is next to other kids her age. As her school is small, private, and largely populated by boys (welcoming all kinds of learning differences, not just HF autism), we sometimes don't know where she is in the larger scheme of things.

It makes me want to poop my pants.

Anyway, she bravely went in, armed with Roxie, her tour-de-force sister, who looked as if she would cut-a-bitch-if anyone messed with her sister on that first day.

What I can tell you is this: The staff more or less gets it. I did the obligatory pull-aside explanation, with M's blessing (she is now at the age where she tells me if she wants disclosure or not) and they nod, understanding. They always seem confused, as she excels at so many things, and then something completely unexpected will throw the illusion.

She was just talking to us about species of flowers - so knowledgable - and then she almost started to cry when we had to break into groups of two?

Yes. That's the world we live in. High highs and befuddling what-the-fucks.

In all, she did great. She made two really, really good friends - one lives three doors away from us. Thank the Lordy lord.

She also was targeted by the Girl With the Long Blonde Hair, who found every way to get to her when the counselors weren't looking. Backstage, she'd slap M's hands when the curtains were closed. She'd elbow M in the side so that M would stay behind her (even though they were assigned as TWINS in the show - oy).

Our dinner table became a war room strategy collective. She was only too eager to bring up the day, and we'd do role plays, talk, come up with a plan, and always, slyly, mention that she could tell the counselor. If you know M, you know that she wants to deal with this shizz by herself. Not an option.

Of course, armed with homemade coffee cake or cookies in the morning, I'd quietly ask the counselors to keep an eye on GWLBH - you know, because I suspected that M was being targeted. It's amazing what people will do for a Magic Bar.

The next time GWLBH picked at M, M looked her in the eye and said, BACK OFF, DARCY (not real name, but very fitting).

And you know what?

Darcy did.

At the show, I noticed that M kept a very safe distance away from GWLBH and sort of skulked in the corners until it was time to say a line or sing. When she was on, she was, of course, the loudest, the funniest, and the most in-tune.

I think that camp was exhausting. She'd come home and we'd have our meeting, and her sister would say things like, "M, remember not to get your face too close to people you like - it freaks them out," and them M would say something like "Oh yeah, got it, right. Spatial relations," and slowly scoop rice into her mouth and take mental notes.

My heart ached for her. It soared for her. It was like she had to do two jobs at camp - memorize her role, rehearse, and then the play-within-a-play, rehearse her life and social skills.

She came home and would lie down often. Or we'd go for ice cream, and sit quietly, licking our cones. She deserved it.

Another session began this week. New show, new location, same staff, same organization. She strode in. She said hello to everyone. I brought the girls a half-hour early, to get their bearings, and sipped coffee and chatted with the staff.

M came over, only a 2 on the anxiety scale. "I'm not feeling the new space yet, Mom," she said. "Give it time, honey," I'd say, rubbing her arm. I looked over at the after-care room. Roxie had a table full of new friends already, making them laugh, coloring paper costume designs. "See if you can hang with Rox for a bit," I said. I watched as she went over the to younger girls, and Rox expansively opened her body up, scooting a tiny chair for her sister.

One of the counselors had some of the older girls with her. It was 10 minutes until the camp began. "Hey, M, would you help us stuff these scripts into the folders?" she said.

M's face turned crimson. I saw the tears well up. She walked over. The tears fell. "Give us a minute," I said. She was amping up. Started walking in circles.

"Outside, honey," I said, into the bracing, foggy San Francisco morning. "This is the first day, M. I don't want you to be a target, so I thought we'd cool down out here. What's wrong?" I asked.

"They were trying to push me around. Like GWLBH did at last session," she said, fighting back tears, blinking into the sky.

"Nah, honey. They were trying to acquaint you guys. You're all new. I mean, they're new. You're the professional. You've done the program. I do that all the time with my new students. It's called an ice breaker. They're trying to get you all opening up, talking, you know, on the same team." I admit, it's weird having to explain everything to her sometimes.

"You do? Really? Calculated like that?" Jesus, she's smart.

"Yep."

She stood stock still for another minute. Maybe two. I checked my phone surreptitiously, worried that she'd miss warm-ups, then where would we be?

"I"m done. Thanks, Mom."

And with that, she went in and had a good day.

I stopped hovering. I went in a few minutes later to get my coffee cup. Roxie glanced up from the warm up circle. She gave me a knowing nod and the finger O - everything would be OK.

Later that night, M took a shower.

Roxie showed us her tap routines peppered by lots of MOM MOM LOOK LOOK AT ME - YOU'RE NOT LOOKING.

Then she stopped.

"M was awesome today. She BELTED her song, and everybody was shocked. I think she's going to get the lead. And at warm ups, we had to do our name with a gesture and she did this -" she demonstrated a rock star hair swish and Pete -Townshend-esque air guitar jump. "Uh, I was shocked," Roxie said, "she can totally do all this stuff."

She listened intently to hear the shower, to make sure it was still going. She lowered her voice.

"I have a confession to make," my parochial school child offered, "You know that girl, GWLBH? I didn't tell M or anyone, but I went up to her at dress rehearsal and told her that she was not allowed to talk to my sister that way. I told her I didn't like it at all. I told her I'd be watching her." She started to do a little shuffle off to Buffalo, then ended in a semi-split. "I hope you don't mind." She looked at me.

The fact that this kid threatened a kid 4 years her senior and had the sensitivity to wait to unload all of this when her sister wasn't in earshot?

I've done my job.

"Thanks, Rox," and I meant it. I didn't know who successfully staved off GWLBH - M or Rox. I think M standing up for herself had the most effect. But that Rox had her back? It meant everything.

A few days later, M got the lead. The counselor kept muttering to me, "It's awesome, awesome to watch her bloom," and he said it this time with no coffee cake or cookies as a bribe. M is good. And they like her.

Later, we all snuggled on the sofa. There was no summit that night. Hasn't been for a few nights. I asked the girls if they'd enjoyed camp that day. "Oh yes," M said, snuggling in extra hard, and maybe rubbing her face a little too aggressively on me, but she always does that after 8pm. She's more than allowed to. It's our sundown time.

I asked if she liked the new batch of kids. "Oh yes. Much nicer this time." she said. Then I asked the question I hate to ask. "Have you made any new friends?" She thought for a moment. Roxie gave me a shrug with a knowing eyebrow wiggle. "Well, Mother. Not really. But I'm open and friendly to everyone. When I see someone that moves me, I will."

We sat on the sofa together for a while longer in silence.

"God, I love my family," she breathed in my ear.

And with that, I was satisfied.

Easy, Now.

2010-05-05T21:39:00.000-07:00

I'm in a soft mood tonight.

I usually am out by this time, ten o'clock, drooling in front of the TV, or nodding off into a book.

Tonight, I can't stop thinking of my girl.

Perhaps it was the log I dug up in my office the other day. The yellowed notebook read Miss M's Log in shaky script, and, I daresay, I was scared to open it.

I remember it well. Back when she was little and I was convinced that she had -ahem- speech delay - we were going through evaluations and diagnosis. The evaluator at the time gave me vague and terse and mysterious answers to my quivery questions. To say that the professionals involved were unskilled at bedside manner would be an understatement. They scared the holy hell out of me. (Uh, Choir? Can I get an Amen here?)

I decided that I was going to observe, watch, and "fix" my daughter as if it were a full-time job. (Never mind that I already had one).

My daughter became my project.

I noted things she said and did:

Miss M said, "Gonna get the backpack" made eye contact.

Peed on floor; retrieved paper towel to wipe it up.

Spinning in room, did not answer when I called 3x.

Played ball w/ me for 11 minutes.

It was exhausting to read. It was exhausting to live.

I'm glad that today, my daughter is not a project. My daughter is my unbelievably loving, cool, hilarious, smart, quirky and self-assured young woman who talks music and literature with me, snags my iPod, and bakes cakes and sings loudly with her old mom.

I suppose, by occasionally writing on this blog, that it would seem that I am still observing her. Watching. Vigilant.

Um. Yeah.

I guess.

But truthfully? I think I tell you, dear reader, about my daughter for two reasons.

One. I am shamelessly bragging. She is incredible, and goddamn, do I know it.

Two. Some of you are still there. Observing. Maybe writing things down. Working, working, sweating, working some more. It doesn't stop- I won't lead you astray here.

But rewards.

There are rewards.

They start small, imperceptible maybe, a gesture here, a furtive connection there.

Soon, your kids are having full-blown conversations together in their rooms, playing secret games. Your ASD kid who used to hole up in the play room by herself now drags her friends, or sister with her. She calls friends for playdates on her own.

She has opinions about politics, food, social justice.

She reads Ancient Literature and gets the metaphors - even if you don't.

She follows fashion and pop culture, just so "she's in the loop."

The other day, while hijacking my iPod, she flipped between my Glee downloads and some Ravi Shankar. She decided on Mozart, her favorite. She closed her eyes, and leaned against the car seat.

Eyes closed, she said, "Mother, in the grand scheme of things, how smart do you think I am?"

"Pretty effing smart, M" I said. I debated on whether or not to talk a little about modesty, but then decided that she has earned the right to be proud.

"Yes," she sighed, "I am smarter than the average bear."

We drove in silence for a while.

"So...being smart...is that okay with you?" I asked, looking sideways at her impossible luminousness.

"Oh God yes."

We hung in silence for a moment. I wasn't sure if we were talking about being smart...or being different.

"Mother?"

"Yes, Daughter?" (We like to pretend that we're Austens every once in a while)

"Nothing."

"Okay."

She switched to some sitar music.

"M?"

She looked at me.

"You're perfect to me."

"Yes. I know."

Her smooth, cool, thin hand awkwardly rubbed my shoulder.

My mind soared with platitudes, with many things to say, to acknowledge, that whole part about maybe not being like other people. I had nothing. I did what I knew how to do. I drove and hummed along to the music.

Her little hand kept petting me.

"It's okay. It's okay to be who you are, Mother."

Every day is Mother's Day, for us, dear ones, whose parental experience perhaps did not come with the same instructional manual. Every day is a a chance to see our children and ourselves in a new - and different- (there's that word again) light.

Don't be scared.

It's okay to be who we are.

Miss M says it is. So I'm taking her word for it.

diversify, diversify, diversify

2010-04-22T19:08:00.000-07:00

Is this thing on?

So a funny thing happened to me on the way to work today.

I didn't think about Autism.

I know, I know. Take your jaws off the floor. Calm down. Take it easy.

It's still a hot topic for me.

Just not the topic du jour.

Oh. It's important, all right. I mean, I'm still looking for ways to help Miss M to find her way, to feel comfortable, to find the people who see her.

I still love my autie village, full of wonderful friends, and tips, and gossip, and cheering (and commiserating).

It's that...life has been calling.

And she's boy, is she pissed.

You see, in these years of Extreme Parenting, I've neglected my passions, my well-being, my health, and recently I looked in the mirror and told myself to get my shiznit togethah.

I have been trying to find my balance, to swing on the swing, sit on the nubbly disco seat, temper my dragons with my own weighted blanket of sorts. I need occupational therapy.

You understand?

Yeah you do.

It's hard to find new friends now - those glittery types that I used to hang with - who get the whole PTSD/autism thing. They look at Miss M and see my quietly, gently-quirky daughter who seems pretty normal, and they really can't relate to my anxieties, my insecurities, my jungle-drums when life presents a curve. I mean, life has pretty much returned to "normal" - but we are forever weathered, softened, changed.

I tend to stick to my village, my tribe, and test a pinky toe in the typical waters every once in a while.

I pass.

But it ain't easy.

I understand Miss M when she tells me how exhausting it is to act normal for long periods of time.

It's like gaining weight and wearing a too-small skirt and sucking in your gut all day long.

You can do it.

You just don't want to.

Miss M? She ambles along gracefully. She towers over her chubby, dark mother - a gazelle with luxurious hair and long limbs, puberty padding out her bottom and hips, a sprinkling of pimples threatening her Pre-Rafaelite beauty.

She's eleven now, and likes a boy, and understands her physical changes, and likes them. She'd like to be a professor of Greek Studies when she's older. That, or a philosophy. She really likes philosophy. She found a book on Plato in the school library, and, well, she's "intrigued", she says.

She is incredibly in-tune with the environment, and is careful in matters concerning politics, global warming, human rights, and eco-friendliness. Her vibrations on another plane, it seems, only makes her more sensitive to other life forms and underrepresented groups.

She asked to watch The Blind Side the other night, because, she said, she needed to understand empathy.

Needed.

Needed to understand.

She has a best friend, and likes her class. She doesn't have nearly enough female friends, due to the scarcity of eccentric, intelligent, and interesting girls her age. It's hard to speak Greek when everyone else is wearing butt-crack jeans and listening to the Jonas Brothers.

I have moments of nauseous tremolo when I think of high school, and all that that encompasses, but as the 12-steppers say, one step at a goddamn time. And this need to understand? I think, maybe that this may be her key. That she has the ganas, the will to understand the things that don't come easily. That she thinks about things like people and empathy, and needs to figure them out.

Last Sunday, I woke up late. The kids didn't come in and jump in our bed, like they usually do. I went downstairs to find hot monkeybread in the oven, Broadway tunes belting on the stereo, and a hot pot of tea shared by the two girls. Miss M was stretched on the sofa near the window. She was reading One Flew Over the Cuckoo's Nest.

"Hi," I said.

"Oh. Hi." she said, not looking up. She turned the page. Kept reading.

Roxie drank her tea and loudly proclaimed, "I put in two extra lumps. I hope you don't mind!" From the sound of her voice, she'd put in a few more extra lumps of sugar than she'd let on. She sat hunched at the coffee table, poring over her Wimpy kid book, lips parting, mouthing the words in a stage whisper.

I wandered back upstairs.

My husband was still sleeping, breathing like a baby orangutan.

I lay down next to him.

I felt a thin, sad, smile crack my face.

I'd almost missed it. But not quite.

We were entering the next phase.

gravity pulls you in (why not sit a spell?)

2010-02-17T07:46:00.001-08:00

Our family spent a long (three day) weekend together - the first extended bit of time in quite a while.

As ever, I kept things structured and well-defined, more out of habit than necessity.

I caught myself several times watching the pot of Miss M's development, more out of habit than necessity.

I wondered aloud if I would do this the rest of our lives - monitor how Miss M is doing on her own grid, then how she is doing on someone else's grid, then how everyone in the grand scheme operates on their own.

It's exhausting.

We are a few weeks shy of eleven years old (eleven!) and puberty is well-engaged. Pimples, things growing here and there - and oh joy! - mood swings that wave in and out like the tide. Just what someone who constantly regulates herself needs. More challenge.

Miss M is truly, authentically, Miss M. She still fits some sort of criterion, I suppose, though I just can't put my finger on something and nod and agree and ascribe any behavior to "stimming" or "perseverating" or whatever. This is a kid with a stunning intellect, a terrifying vocabulary, an old-world view of manners, and a heart of gold. It's like she's been transported from another time. As if she jumped into a time machine and has arrived from Planet Jane Austen, where civility reigns, and one must fan oneself and take tea.

I wrote to a friend last night, who is a professional in the field and explained that now that OT, speech and other therapies are over, what now? There is nothing to change or fix - she is thrillingly and blessedly our Miss M, who marches to the exotic beat of her own drummer.

This does not, however, make it easier to plug into the typical eleven-year old world. Things like pettiness or sarcasm do not have a place in her heart, nor do things like frivolous music or pop culture. Things to her must have meaning, and a point, to which I say that someday, her college professors are going to worship at her temple.

But for now? Difficult stuff. I might add that she is content, she is well-adjusted. She knows who she is. We just all sort of stand at the edge of the yard with her and look out, scratching our heads. Those typicals just seem so, well, ordinary sometimes. As Miss M is fond of saying, "lacking in imagination."

We talk, talk, TALK about our feelings, the differences, the similarities, the perspective, the empathy, the this, the that.

And you know? It just seems like crushing a flower to constantly encourage her to fit in. I don't do it. We use the word appreciate a lot; we appreciate other people and how they think. It's sort of a reverse noblesse oblige of the neurodiverse set.

And that seems to fit okay.

I wrote an essay a million years ago, in Gravity Pulls You In. I haven't looked at it since I wrote it - not sure I can right now. I feel light years away from that person who analyzed and lost sleep over my daughters differences. First, terrified, then defiant, and now - meh, it's all good.

But I remember.

I remember having to troll blogs and read essays and anthologies, and talk and wring and sweat and tell myself that it's all okay. I think we all do/have done/need to do that. To process. Work it out. Sweat it out and suck it in.

Do check it out. I received a copy last night, and it's glossy, colorful cover is alluring, holding inside nuggets from those who get it.

It'll be a good thing to read today.

And maybe, if I'm lucky, Miss M will take tea with me.

how do you manage your input?

2010-01-12T06:35:00.000-08:00

As many of you with loved ones on the spectrum know, the world often times offers too much sensory input for these humans to process. My child, as well as yours perhaps, has to find ways to adapt to life in an over saturated environment.

My daughter likes to hug a body pillow when she gets home from school. Some kids jump on trampolines. Some rock, hum, or flap, and some, when they are out and about, need to block noise with something soothing and familiar.

My venerable friend, Jess Wilson, has a brilliant master plan for outfitting folks on the spectrum with used iPods, so that everyone who needs one can get some peace -and as she calls it - freedom to move about the world. The Freedom Project.

Go here now, and help. Would you?

Thank you.

let your flag wave!

2010-01-01T11:06:00.000-08:00

Happy New Year my doves!

May 2010 be everything you wish for, and if it isn't, well, then, let's make it so, shall we?

Easy for me to say, as I sit, squinting at the screen, hung over and clutching my Espresso Roast.

What do I wish?

For my children to feel loved. To be happy. To realize their potential.

Wait a second.

That last bit? The realize their potential part? Let's make this clear. I don't need my kids to make the honor roll, to play ten sports and volunteer at soup kitchens.

I don't need them to be voted most popular.

I do need them to be their most authentic, to-thine-own-self-be-true selves; to revel in their magnificence as it is, and to strive for more, however tiny the more may be.

You feel me?

Yep. I knew you would.

That's why I want you to take your hungover ass over to my buddy, the erudite and lovely Jess Wilson's brag page, where we can all celebrate the unique and miraculous triumphs of our kids, and let our flags wave.

Here.

Go now.

My friends? I sincerely wish you a peace-filled and joyous and thrilling New Year.

Let's make it happen.

power

2009-12-23T19:05:00.000-08:00

I would love to tell you how proud I was of Miss M at her Christmas concert at the symphony hall. How I puffed up with pride and took pictures, and how we went out for a celebratory ice cream afterward.

It didn't happen.

Three days before the concert, I picked Miss M up for her usual mad dash to rehearsal. Her schoolteacher pulled me aside. Miss M hadn't been herself. She was exhibiting some behaviors that were waaay out of character. Considering the schedule we'd been on, and the pressure of rehearsal, it didn't take a rocket scientist to figure it out. We agreed that I'd talk to her in the evening, and we'd touch base the following morning.

Miss M got into the car, stuffy nose and glassy eyed. She was on edge, a little out of sorts. I asked her what was wrong.

"Oh, nothing," she said, doing a terrible job of lying.

Grimpy, my intrepid father, sat in the passenger seat and we exchanged glances.

With gentle prodding, she unfurled a tapestry of anxiety; her back hurt from standing for hours; she had a hard time standing still and acting "like everybody else" - and worse- the other girls were mean to her.

"They make faces at me, Mom. When the teacher isn't looking, they step on my folder and cut me in line and snap at me when I bring it to their attention."

The jungle drums beat in my head.

"Would you like me to call the teacher?" I said, trying to remain calm. "What would you like me to do?" I said quietly, as not to further amp up her anxiety.

"I - I - it's too much for me to act so- so - still" she said, "and no matter how reasonable I try to be to the girls, they're just mean. They know I'm different."

My heart split into a thousand little pieces, and I gripped the steering wheel in the hopes that the shards would not go spilling out of my chest.

"I can talk to the teacher," I said quietly. The organization does a mighty job of keeping the girls behind a secured door - I knew that the best I'd manage would be an email or message that wouldn't be addressed for at least a day. I glanced at my clock. Half- hour.

"M," I began, "I'm going to ask you how you want me to handle this. How can I help you?"

I could hear her snuffle her nose and suck on her cough drop. Oh Lord. On top of it all, she was sick.

It was too much for her.

"If you'd like to go home today, I'm perfectly cool with it. You'd have time to think and recover a bit." I made the offer, pulling over to the side of the road.

She thought about it. I could hear her wheels turning. "The concert is only a few days away. And I've worked so hard," she said.

"Listen. You have the power to decide what you want to do. You are a powerful person. You don't have to take that garbage from the girls. I can help you with that. You don't have to stand for hours and sing and try to act like everyone else. Whatever you want to do is fine with me."

I could hear her smile in the back seat. "But you've spent so much money," she said weakly. It wasn't a good argument.

"I could give a crap about money," I said.

My dad, God bless him, chimed in. "Hija," he said in his little old man voice, sounding so much more sage than my own,"You have the power to decide what you want to do. You shouldn't ever do anything you don't want to do."

She started crying. "The truth is...that I want to sing. I want to sing for fun and enjoyment. I have this idea...I'd like to go back to the church choir, where Kathy lets me take breaks and move and clap and play the tambourine. It's...it's alot to be..." she inhaled," normal."

We rode for a few blocks.

"May I stay home today, and think about it?"

I smiled, in spite of the pulsing blood in my ears. "Thy will be done, honey."

We turned off of Market street, and headed home. We stopped by the boulangerie for macarons, and she skipped, held my hands, kissed her grandfather. Her relief was palpable.

We made a big dinner and built a fire.

When her dad came home, she told him what had been happening. We sat at the table. She cleared her throat for an announcement. "My mind is made up. I don't want to go back," she said bravely.

She hasn't looked back or thought about it twice. I suspect that there may be some fall out later. There always is, months after the fact.

My husband had a hard time with her "shirking her responsibilities." With the money. As I reminded him, "She's autistic. Our rules are different." I felt slightly like a mama bear, baring my teeth. He eventually got it.

As for the bullying, we've talked about it at length. She handled herself appropriately. There was going to be no support from the organization. The telltale sign was that the instructor never bothered to call me back or address the bullying. As my friend bluntly said, "Not the place for her. Case closed."

It makes me sad that the bullying happened, in spite of Miss M's efforts, of her frank attempts at rectifying the situation. Some places, I guess, are still not for us.

I struggle with the Autism Goggles, the glasses I wear when my spirits are down and I'm weak and vulnerable and all I see are the differences. I've been flipping between my clear vision and the goggles for days now.

You know what? I love her differences. I love the way she eats organic salads and apples as if they were candy. I love that she speaks The Queen's English. I love that she reads Dickens and O.Henry and Shakespeare and mythology and relates it to her life. I love the way she cuddles her sister and studies human behavior and works on "trying to read" people.

She knows who and what she is, and more importantly, she knows her own power.

Today, I trudged to the grocery store to buy the prime rib for Christmas dinner. I walked into the store, greeting the employees by name, as I always do, joking with the barista and teasing the produce manager.

I got to the check-out. The bagger was obviously affected, perhaps cognitively impaired. He stimmed for a moment on a package, and stared at the large lump of wrapped meat. The line behind me was long and impatient. "How you cook this?" he said, stroking the hunk of beef. "Oh, I do a rub and cook for a long, long time." I noticed him struggling with the bag. I opened it for him, and basically bagged the items myself. "What's your favorite holiday food?" I asked, trying not to look at the angry mob behind me. "Ice cream! Peppermint!" he said enthusiastically. We shared a giggle.

I felt my ears get hot, and that familiar prickly feeling behind my eyes. I wished him a happy holiday, and barely turned my back before the tears fell. I wiped them away, the ache in my chest dull and hard. As I thankfully approached the electric doors, the woman at Customer Service stopped me. "Thank you for always being so nice, especially to the handicapped employees," she said warmly. I noticed that her assistant was wiping down carts with antibacterial wipes. She has the beautiful almond eyes of Down's Syndrome. She smiled at me, great creases in her chubby cheeks. I nodded, as I couldn't speak, and got out the door. I began sobbing, and ten minutes later, sat in my car, still going.

I cried for my daughter, who has to work so goddamned hard. I cried for your child, who has to work so goddamned hard. And I cried for that employee, who took far too long to get that damned bag open, and who loves peppermint ice cream at Christmastime.

Later, the girls and I took the train downtown to see a Christmas ballet. Miss M sheepishly sidled up to me. "Uh, Mother? I don't like to ask for things, but - "

Without her finishing her sentence, I handed her a small roll of dollar bills. She likes to give dollars to Salvation Army bell ringers, to homeless families, to street musicians.

She doesn't ask for gifts. She asks for dollars to give away.

She gave $2 to a toothless man playing O Christmas Tree on his harmonica. She slipped her cold hand in mine. She nodded to the man and gave a little wave. "Thank you for the dollars," she whispered, "thank you for honoring Christmas all through the year."

I am not going to lie. Having a special needs kid - it can hurt sometimes. It cuts like a knife. I often feel like hurting the people who hurt my child.

But my girl?

She is magnificent. She shimmers. She glows.

And it is because of her that I see the bagger and know his name.

She makes me a better person.

And that's power.

in no particular order

2009-11-13T19:52:00.000-08:00

Roxie has been wiggling her front tooth around for some time. Its partner, Other Front Tooth, left some time ago, and feeling lonely, it's decided that It's Time to Fall Out.

I'm in the middle of a production. Those of you who have known me a while know that it doesn't get any more stressful for me than these busy production times- at last count, I worked 91 hours last week. Last Saturday, I had two hours -count 'em! -before I had to go into the salt mines.

I bustled around the house, then, tornado-like, looked at the girls. "You guys? I've got to pick up some last-minute props before rehearsal today. You can come with me, or stay with Daddy." The only bonding time we'd have.

They opted for shopping with me.

In the mall, desperate for help, I grabbed Miss M by the shoulders. "Listen up," I said, "I need a pencil skirt in a size four for Lia. I need a pink headband, and some sparkly earrings." The music in Forever 21 thumped loudly. The lights were flourescent and bright. M nodded. "Got it," she said, "and I'll take care of Roxie. Where will you be?"

I was stunned by her maturity and can-do attitude. "Uh, in lingerie," I said,realizing that this was my daughter with autism who was manning a busy, bright mall store like, well, a neurotypical.

I heard the girls laughing and Roxie pinched my ass. "Done and done," M said proudly.

She displayed her booty.

I'll be damned. She had everything there. A little more gaudy than I'd want, but I'd take it. And I did.

We were rushing back to the car - always in a hurry to get to the theatre - when Miss M spoke up.

"Mother," she began timidly, "Roxie won't say this, but she'd like to stop at the Disney Store," she shot a look at her sister, "there are some things she'd like to discuss." Roxie held on to her sister's hand, the move that just a few months ago, was ours exclusively.

I glanced at my Blackberry. "We have ten minutes," I said.

Mother of the Year.

Roxie immediately shot over to the Princess and the Frog display. She pored over the dolls.

Miss M sighed. "It's so much more than being a princess," she said dreamily, "it's more about overcoming something. The whole African-American thing, the frog transformation and all that," she said. I nodded in disbelief.

A few minutes later, I called time.

Miss M stood before me. "If I may," she said, "I'd like a word with you. Alone." She looked at me meaningfully.

We pulled over in front of the pink pajamas. Roxie observed us from the corner of her eye. Smiling.

"Mother," she began, "I've been thinking about this. I'd like to get Roxie the Tiana doll for Christmas. Not the cheap one. The really, really good one." I smiled and patted her shoulder. "Whatever you want," I said, "we'll make a day of it. A spree," I said, in typical over-do fashion. "No," she said, "not a spree. Meaningful. With purpose."

I felt like a schmuck.

Miss M looped her arm in mine, and walked me over a little to the side. "And one more thing. She's going to lose that tooth any minute. I'd like to get her the figurines when she does. Sort of a rite-of-passage gift."

She then looked at me. Hard. Then, she slowly and methodically winked her right eye at me. She raised her eyebrows. "Got it?" she stage-whispered.

I did.

We walked over to her sister, who knew exactly what was going on. "Mommy," Roxie whined, "I don't like it when you keep secrets from me," she said, a sly smile creeping across her face and a sideways glance to the doll

As we exited the store, M hissed at me, "And I said not the cheap one, either!" and winked at me again - slow, deliberate, obvious.

We got into the car, and I started the ignition.

Roxie smilingly whined in the back. "I don't like it when you talk about me," she said, knowing that Christmas is right around the corner. "What were you talking about?"

M winked at me again, tapping my hand and giving me a thumbs up sign, hidden from Roxie.

"Oh, you know. Girl stuff." M was enjoying herself. "Like, uh, period stuff!" M. knew exactly how to shake the kid.

Roxie whined. "I don't even know what period is! But I don't like you talking about it!"

M silently chuckled at me and made a knowing face. "That'll teach her," she said, sideways out of her mouth.

It was all there. Nonverbal messages. Theory of mind. Thinking of others. A little fibbing. All in gorgeous, jumbled order.

My girl. She's got it.

I supppose when they said Not Otherwise Specified, this is what they meant.

Roxie's tooth fell out yesterday. Tomorrow, M and I have a date to buy some Princess and the Frog figurines.

It's not a spree.

But it is very meaningful.

ability

2009-10-26T08:26:00.000-07:00

The other day, I brought Ted, my number-one-all-time-greatest student - my most incredible actor and thinker - to a special meeting with the top theatre educator in the country. (Drama Mama pulled a few strings) They had an hour long one on one to talk about colleges, auditions, and future plans.

Ted, as I've mentioned before, is one of ours.

Ted has played every substantial role I've thrown him effortlessly. His vocabulary and astute understanding of literature has played a huge role in his understanding of text and dramatic structure. His comic timing is genius. Like, someone who has studied hours of vaudeville. Depth of character is impressive - like, well, someone who has studied character. Most importantly, his feel for character carries with it an empathy that only a person who understands hurt can cultivate.

Before the meeting, I coached Ted on how to talk to theatre professionals. "Don't chew on pen caps," I said, "Slow down your brain before you answer questions".

He knew what I was talking about.

The day before, I reminded him to take an extra-thorough shower (hygiene can be an issue at times) and told him to wear his school uniform, clean and pressed. His mother was on board.

At the end of the day, he met me to drive downtown for the meeting. His shirt had ketchup stains on it, and he'd ripped his pants.

I found some clothing in the costume shop, and checked that his shoes were on the right feet.

His mother met us at the office, beautifully dressed in her camel coat and boots, and we sat, waiting.

Ted looked around, interested. At one point, we heard the sounds of a group rehearsing in another studio. Ted closed his eyes and said to us, "Smell that? That's the smell of good acting, right there."

When the professional opened the door and greeted us, his first words were that Ted was tall and handsome, and that his voice was modulated and well-placed. I felt a surge of pride and relief, and knew how important that was to Ted, who has felt like an ugly duckling all his life.

Ted was brilliant during the meeting - smart, funny, interested. He was asked to cold-read a script (act without preparation on an unknown piece -no pressure there!)
and did so with the ease of an actor twice his age. I know him well, and knew that when he crossed his legs, he was gently applying pressure to help himself.

As Ted picked up the unknown script to read, I knew that he'd do well. He began reading, and it was beautiful. Instinctively, his mother and I looked at our laps. We cry at these things. I struggled to control the tears dropping onto my slacks, lest the pro notice me losing it. No need. He was rapt with attention at Ted's beautiful read.

We ended the meeting with the pro sincerely assuring Ted of his future, and giving him stellar professional advice. An old friend, he stopped me at the door and said into my ear, "You weren't kidding about this one. He's fantastic. Well done."

I savored his words all the way to the car. I felt some sense of propriety over those words, as if I have anything to do with his success. I laughed softly as I thought of the hours invested in this young man, the phone conversations with his mother, the strategizing, the work. Then I thought of the hours he's worked on himself, by himself.

His story is not mine to tell, but suffice to say, that he is one of our kids; down to the nubbly disco seat, the hours of OT, the therapy that he still goes to every week. There have been mishaps along the way; there's been the heartbreak of first love, and the need to "fit in" at high school - but here is a young man with his feet firmly on the ground who still kisses his mother goodbye and openly says "I love you, Mrs. Drama," at the end of rehearsal.

What I want to impress upon you is that these odd talents - the hyperlexia, the photographic memory, the need to figure out human nature from a third-person point of view - have only strengthened his ability to succeed. He has had a cracker-jack support team, to be sure - but his autism has inextricably made him the genius, lovable artist that he is.

The words "splinter skills" have always bothered me, as if strengths in our kids were an anomaly, as if they weren't allowed to have talents. It's all part and parcel of the same package, but a gift, nevertheless.

We left the building, and walked into the warm, dry, dusky air. Ted excitedly loped next to his mother, and playfully punched me on the arm.

"You totally have this," I said to him, rubbing his arm.

"I know," he said, rubbing mine back.

Splinter skills, my ass.

Ability. Pure ability.

No pressure.

2009-10-11T18:01:00.000-07:00

The tribe has spoken.

You need to know what is going on with The Fabulous Miss M.

I have been remiss - tending to my umpteen duties at work - and I've been ignoring your needs.

I'm sorry.

You know I could never quit you.

You had me at hello.

Anyhoo, let's catch up. When last we met, Miss M was entering the rough and choppy seas of NT tween girls in a world-renowned chorus.

Talk about drama for the mama.

Oy.

For those of you flooding my email, yes, she is doing splendidly; she loves singing and is thrilled by music theory lessons (I shit you not).

She organizes her two looooooong rehearsal days - juggling homework, shower, and rehearsal like a pro.

She wakes up in the morning, verbally going over the steps of the day, what items are needed (Ricola cough drops, Kleen Kanteen full of water, music folder, protein-and-not-carb snack)

We've been to a parent/student mixer and have noted that though she is not the center of the socializing, she handles herself well and is available for socialization if it were to come up. In other words, she's appropriate and not calling attention to herself, polite but not forthcoming. You know?

There was one teensy incident the other day, where it sort of shocked me into remembering that oh yes, there is this little neurological difference that doesn't go away sometimes -hmm, what was it? Oh yes.

Autism.

My bad.

Anyway.

In typical Drama fashion, I hauled tail to her school, so I could make the pick up and drop off to chorus in one swoop. I was a few minutes late, but making good time (she'd have plenty of cool down time in the car before rehearsal) and at least 10 minutes to pee or snack at rehearsal before it started.

I parked in the tiny parking lot at her school. I made a brief call, leaving a message for work, and proceeded to walk across the lot. Miss M was looking mildly distressed, the passive after-care teacher whispering something meaningful in her ear.

As I got closer, I reminded myself not to bound, not to make any "hard" faces so as not to ramp up whatever was going on.

"Hey," I called, all fake cheeriness, "What's going on?". Miss M sat on the bench, softly stomping her foot and slapping her hand lightly on the bench. Her face was squinched up, but not crying. Passive Aftercare Teacher flatly intoned, "Miss M is trying to calm down."

Which.

Is.

A.

Big.

No-No.

You see, in Miss M land, the worst thing you can do if she's ramping up is to tell her to calm down.

In her head, she's already trying.

And she doesn't really like to be told what to do.

Passive After Care Teacher means well, and likes M a lot, and there is never really an issue. I decided to model appropriate M-management skills for Passive After Care Teacher.

"So, M. Just tell me what happened. The facts only, please."

Apparently, what happened was that Miss M was anticipating my arrival for chorus; not wanting to be late, she stood like a Meerkat in the yard, ramrod posture, backpack already perched.

She stood for ten minutes, eyes scanning the parking lot for me.

When I pulled in, then stopped for a moment to call in a message, she thought that I was waiting for her to jump in the car. (Since we do a hell a lot of pulling up and jumping in/out these days)

Forgetting to inform the teacher, she started making her way across the yard.

The teacher stopped her, lambasted her, and M, confused, snapped at her. (Something like "OK! I heard you!" with a foot stomp)

Passive After Care Teacher, in her same monotone, kept telling her to calm down.

Further accelerating the tension.

Enter the Mama Bear.

I heard the story. "Okay, M. Sounds like it was a simple mistake - you were excited to get to rehearsal, yes?"

She nodded. Jiggling her leg. I could tell that she was worried about being late to rehearsal.

I continued. "Dude. You totally were responsible about getting to the car, and to me, and to rehearsal, but it slipped your mind that we have to sign out. I so get that."

I took a breath.

"BUT," I continued, looking meaningfully at Passive After Care Teacher.

"No matter what, there are things that we simply cannot do in the world, no matter how frustrated you are, or misunderstood the situation must be. And we do not speak like that to a teacher. Under no circumstances. Ever. So if you'd apologize, we can talk about this after you've relaxed, and we can get on the road."

Miss M stomped slightly again. "I'm sorry, OKAY?!" she said, the whine still in place.

Passive After Care started in again. "Well, you just needed to calm do-"

I cut her off.

"Let's try that again, M. And let's use the right intonation for an apology."

She softly and sweetly said, "I'm sorry, Miss B. It was a mistake."

Passive After Care started in again, "Okay...you are usually a really good student, and when you get - "

"Oooookay," I said fake-cheerily, pulling M with me in a fake hug, "We'll see you tomorrow and thank you for working this through with us."

Miss M smiled and gave a little wave.

We got in the car.

I know better.

I buckled my seat belt and turned to Miss M. "We have exactly 25 minutes before rehearsal. What do you need to chill out? I do suggest you get on that snack."

Miss M dug in her bag. "Mother, if you don't mind, I just need to turn on Madonna and practice vocal silence. I just want to eat my soy chips right now, and we can talk about this debacle later."

"You got it."

Miss M deplaned the car 20 minutes later, smiling and waving.

She had a good rehearsal.

We talked later, before bed.

It was a simple, forgetful mistake.

She's doing it. Managing her stress.

Of course, the rest of the world doesn't understand our way of managing stress (I mean, Madonna? Soy chips? Driving in silence?) If Miss M can continue to know what works for her? More power to her.

I spoke to a friend that evening. "I don't know about you, but when I'm upset? The worst thing to say to me is 'Don't be upset' - makes perfect sense."

I forget, sometimes, that Miss M is ten years old, and her regulatory skills are far beyond those of most adults. Considering what she has to manage? Extraordinary.

And for that, I report to you: It's going well.

One sleep over last night, two birthday parties this weekend, and now a play date.
She came home in her tie-dyed tee shirt, hippie bracelets, and Uggs, her skinny legs making her look all at once so old, and still, so young.

She walked in the front door, threw down her sleeping bag. She paused at the bottom of the stairs. Thinking.

She held up her hand, partied out. "I'm going upstairs for some peace and quiet," she said, "I do hope that's okay?"

It wasn't really a question.

"I bought you some books last night for that very reason, M...All non-fiction. Ghosts. History. Okay?" I kept making coffee, not looking at her, no pressure for her to like anything that I picked out.

"Perfect," she said, putting her fingers together in a perfect O.

Yep. It's going well. We know what exactly what to do.

independent leave

2009-09-08T20:53:00.000-07:00

To my teammates...my sisters in parenthood...I felt you with me every moment of this very long day. Thank you. I think our girl did it for us.

I spent most of the day in knots, looking at the clock.

I haven't done that in a long, long time.

When I picked up Miss M at school, I nervously made my way across the yard, telling myself to keep calm at all costs. I knew that we would have a brief ride to her chorus rehearsal, and I couldn't get her worked up.

Her teacher stopped me. "Drama?" she started, as my heart began to sink, "Miss M is having a hard time focusing back to school. I know it's only been five days, but I don't know? Maybe it's having so many new kids in her class, hormones - and she mentioned some rehearsal today?"

Of all days, I was gonna get one of those talks?

One of those talks I hardly ever, ever get anymore?

I thanked the teacher, made an appointment, and hauled ass across the yard to the parking lot.

Had to keep my focus. Had to keep Miss M's focus.

We got to the rehearsal studios, teeming with girls of all ages. I walked her to her studio and kissed her goodbye.

I didn't want to linger.

As I got upstairs, I found myself smack dab in the middle of a two hour orientation for new parents.

Why God, why?

Luckily, one of my very best autie mommy friends kept me company on my Blackberry.

She texted me pep talks. We played punny word games. We joked. Like a good friend, she diverted my attention.

At the end, the docent let us tour the building. I peeked in Miss M's rehearsal room, only for a moment, I told myself. I didn't want to hurt my heart.

The kid, who, according to her teacher, is having focus issues with math, was attentive and smiling, watching the teacher intently. She saw me out of the corner of her eye, and gave me a short wave and sly smile.

I made myself scarce.

At the day's end, she came bounding out of the building to the sidewalk, where I waited. She flashed her ID to the security agent.

I signed her out for "independent leave", which means that she can walk herself out to me. No need for me to fetch her from the studio.

She's a big girl.

Her smile was huge, her eyes sparkling.

"That was AWESOME," she said, unusually effusive.

She never stopped talking.

She talked about alignment and posture, oh , and did I know that she'd have music theory on Thursday?

Hey, a lot of the girls are a year or two younger- so that's really easy for me, she said.

She told me how she and a few girls spied on the advanced level at the break. Strictly as motivation, she assured me.

Oh, and she'd be singing at the symphony hall at Christmas. She named the piece of music.

I asked her to sing it for me.

"Mother? No offense, but um, when you and Daddy hear me sing, sometimes, you praise me too much, and it embarrasses me. If you would, can we just keep your compliments inside our home? I don't want you to stop them, just, you know, keep it modest." She looked at her choral binder, smiling at her independent leave ID.

As usual, I wore my big, huge black sunglasses. I've done that for most of her childhood, so that my tears go unnoticed.

But it wasn't really working too well.

She saw my tears, paused, then said nothing.

But her chatter got intentionally more animated, more cheery, more chatty. She was trying to shake me out of it.

She said she felt energized. When we got home, she did all of her homework in her room, by herself.

At bedtime, she said, "I'm thinking....I'm thinking that someday I'd like a solo. When the maestro called on Elizabeth and she sang, I had this feeling...it was like...I can do that, too."

Our plan exactly.

okay, so i'm begging

2009-09-07T20:00:00.001-07:00

I know what you're thinking.

So I hardly ever call. I post rarely.

But I'm positively begging for your help.

You see, tomorrow? Miss M becomes the member of a world-class chorus. She will run with some of the most talented and typical girls in the city.

She auditioned. She was accepted.

She waited for a soprano slot to open.

She starts tomorrow.

Listen.

I hear you. Don't think I can't hear you over here.

I know she's been working her ass off. She controls herself, she regulates herself, she is appropriate.

I know all this.

On Saturday, Roxie started her first day at a world-class ballet school. Again, we had to prove ourselves to get in.

On arrival, she strutted in with a winning smile and a tight bun.

As the class dispersed, she hugged her new best friend goodbye.

Yes, I hear you. They are two entirely different people.

But sometimes?

Sometimes?

I wish God had given Miss M a tenth of the ease and confidence her sister was born with.

At dinner, I gently brought up the subject of tomorrow's rehearsal. Miss M paused thoughtfully over her salad. "Yah. I'm nervous," she said, "but I gotta do what I gotta do." She sighed as if she were representing a small country in the Olympics.

In a small way, I think she is.

Her successes speak to the determination and capability of all of our children. If M can do it, anyone can.

I think she'll be just fine.

Old habits -er-anxieties die hard.

But just this once? I'm asking. Can you please throw in a thought or prayer for the mama? 4 o'clock, Pacific time?

I'll be the one face down in the waiting room, hand clutching my heart.

My daughter. She's doing it for the team.

deeeeep thoughts.

2009-08-30T09:23:00.000-07:00

I don't know about you, but one of the things that has been hardest to accept as a parent of a special needs kid has been the silence.

It's like being a comedian and working to the worst audience ever.

I used to pick my daughter up after school. I made the grave error of asking how her day was? What did you do? Who did you play with?

Nada. Zip. Zero. No response.

It drove me batty. I would sometimes reply for her, under my breath. (Oh, I had a great day, Mommy! I played with six girls on the monkey bars!)

I later concluded that Miss M was DONE, that her temporary check-out was merely her way of re-charging, of decompressing from a day spent conforming to the rules and regulations of a Big Huge Loud Public School.

It's been years since we've had those one-sided conversations in the car. She's quite forthcoming these days, and is a pleasant car companion.

She sits in the passenger seat, commandeering the DVD player, punching the buttons and adjusting the volume.

We have been listening to the soundtrack from HAIR. Miss M likes to lean back, eyes closed. She likes me to describe scenes, to explain what is going on in the story.

We were listening to I Got Life the other day.

I got life, mother
I got laughs, sister
I got freedom, brother
I got good times, man

I got crazy ways, daughter
I got million-dollar charm, cousin
I got headaches and toothaches
And bad times too
Like you

I got my hair
I got my head
I got my brains
I got my ears
I got my eyes
I got my nose
I got my mouth
I got my teeth
I got my tongue
I got my chin
I got my neck
I got my tits
I got my heart
I got my soul
I got my back
I got my ass
I got my arms
I got my hands
I got my fingers
Got my legs
I got my feet
I got my toes
I got my liver
Got my blood

I got my guts (I got my guts)
I got my muscles (muscles)
I got life (life)
Life (life)
Life (life)
LIFE!
Miss M sang along in her perfect voice. I asked her what she thought it meant. She paused a moment, turning the volume down on the stereo.

"Well, Mother," she said, "he's describing the parts of his body and sort of being glad that he is here, that he is living life, that he is in his body." She pushed her glasses up her nose.

Impressed, I nodded. A few songs later, Where Do I Go? came on.

Where is the something
Where is the someone
That tells me why I live and die

Where do I go
Follow the children
Where do I go
Follow their smiles

Is there an answer
In their sweet faces
That tells me why I live and die

She held her hand to her heart and sang along earnestly. Again, I asked her what the song meant. Again, she turned the volume off.

"I could be wrong, but I think it's about questioning why we are here? What are we put on this earth for? It is sort of bittersweet - sort of happy and sad - and I think that's what life is sort of about." She turned the music back on.

I turned the music down. "That's pretty damned deep for ten years old, M. Pretty deep, man."

She didn't look at me, but smiled.

Then she turned to look at me.

"Oh Mother. You don't even know how deep I am."

I sucked my breath in. "How deep are you?" I asked.

"Sometimes, Mom? My thoughts are so deep that I can't even explain them to you. You know when you think I space out? It's because I'm thinking so hard. No offense, but I don't think you'd understand."

She thought for a moment. "For example? Like I have these thoughts - I think about whether or not we are really here or not. That people might be illusions. I mean, our interaction right now might just be something we're projecting."

We sat on that for a moment.

I drove.

"Another one is that I think a lot about the forms God takes. I like to wonder whether God comes to earth as different people, or animals, or situations, to test us. Or teach us lessons. Like, I mean, God could be someone we might see in Safeway today. And FYI, I don't believe in Heaven. Or Hell. That's just something people made up."

I kept driving. Nodding. Trying desperately not to look dumb.

She turned the volume back up. "Well, I can try to explain this again another time. It might be too much for you right now."

I used to think my daughter "went away" sometimes. That we were too much for her.

Now I realize that we weren't enough.

sister, can you lend a hand?

2009-08-24T21:41:00.001-07:00

Hello, Beautiful You.

Here am I, on the eve of another tumultuous year of teen-wrangling, life-saving, pimple-medication buying (yes, I did, for one student who could not afford it) teacherdom.

I'm sort of excited.

I'm sharing the reigns with a trusted, dear professional friend, who will, I believe, at last, help me administer to my students the way I deem fit. In other words, someone who is worthy of my students.

So I will collaborate.

Ducky.

This means, my friends, that this is Phase Two of Drama's Plan to Take Care of Drama.

Miss M, it seems, is well on her path, and is cooking right along, needing me for things like rides and pocket money, and the occasional warm cookie, but really, is now a fully actualized person. She has interests and friends and a social life that is no longer of my creation.

I've been putting a lot of thought to this - this what? - this transition that I wish to happen.

I'm feeling like myself again. (Shhhh. Don't tell anyone)

I don't feel guilty if I'm not engaging my daughter 24 hours a day; I don't cry guilty tears if I happen to cook dinner or talk on the phone without directing my every energy wave to my daughter. I do, however, pause for a moment and get confused and check to see if she's still with us, or maybe hover a little too long in the doorway of Miss M's room, and then her friend ever so gently closes the door and says, "Um, excuse me, Mrs. Drama, but this is private girl talk," and I walk away elated and sad and missing Floortime just a little bit.

There are nights, my friends, where I still wonder.

Today, when I picked Miss M up from her friend's house, she pouted at the door and breathed an audible Aw crap when she saw my face. It would seem that it was far more pleasurable to talk about You Tube and boys and eat rice crackers in her friend's tent in her backyard.

Of course it is. To borrow a phrase from the lady herself, Duh, Mom.

I sort of sit nimbly by, waiting to be of service, but then also, thinking, hmmm...now is the time for me to do __________. (you fill in the space)

The other day, I ran into a friend. She is the mother of a special needs kid; I knew her at the previous school Miss M attended.

Whilst catching up, we launched into Special Needs Talk in about 2.5 minutes, after the cursory hellos and how is your husband-oh-really-and-where-did-you-go-on-vacation-I-like-your-hair niceties.

I noticed that she had purple bags under her eyes, and that she had a good inch and a half of grey hair that needed covering. She wore baggy everything, and spouted IEP talk to me in a language that only we understood, standing there in that coffee shop.

She is still in the thick of it. I imagine that she still worries at night, and admittedly, even she says that she gets that pit-sinking feeling whenever she thinks of the school year that is to come.

I wanted to ask her what was on her personal IEP; what goals did she want for herself, what was her baseline?

And more importantly, how would we get her the services?

Without stirring up a shitstorm - yes, I know how impossible it is for special needs parents to get a break - I'd like to brainstorm with you. How do we care for ourselves without sacrificing precious care for our loved ones?

How do we help our friends in need without sapping our own personal resources?

I am thrilled to begin to enter my next phase of development. I feel a responsibility to reach out to those around me who are walking around in Starbuck's with stained clothing, clutching a Spec Ed file, with sunken, hollow eyes.

What can I do?

What can we do, as a village of multi-tasking parents?

Not to be all Kumbaya about it, but dammit, our people need help. Our parents need the proverbial oxygen on the plane, as Oprah says in her mighty Oprah way, so that we can help the people around us who are not as strong.

How do you care for yourself? Please. Tell me. I'd love to know what we, in this kingdom of non-stop, can do for ourselves and each other so that we can feel...well, like ourselves. Not just the "parent self" - (though that is what we have embraced and become) but as the person who, independent of our children, has a whole other inner life going on?

I offered to watch the child of my friend, the Half-Crazed with Exhaustion Starbuck's Woman, so that she could get a manicure, go for a coffee, a yoga class, get some sleep.

She smiled wanly and said that she'd think about it.

I'm waiting for the call.

What would you do?

I'm thinking maybe I should make the first move.

Not to be all Kumbaya about it or anything.

one small step for humankind

2009-08-04T20:24:00.001-07:00

I know I'm preaching to the choir when I say that for those of us with special needs kids, summers are hard. By about February, I am trolling camps on the internet, sweaty palmed, looking for key words on sites that indicate even the slightest bit of inclusive spirit.

Most have disclaimers about "behaviors", which makes me immediately give my screen the finger.

Miss M has always attended NT camps, with no aide or support, and has generally done fine. No outbursts, incidents, or (ugh - there's that word) "behaviors".

My mark of success has always been her engagement level. Early on, in K and 1st grade, she was able to make a friend or two. In 2nd and 3rd grade, she mostly went through the day with polite but minimal engagement with other campers. She ate lunch alone. Counselors gave me sad smiles at pick up. I think they felt a little sorry for my kid.

Summer is my personal benchmark for Miss M. It's not school, where there is great deal of support, and socialization is encouraged and facilitated when necessary.

At camp, she's flying solo. Running with the big (NT) dogs.

This year, we put her in a high cost, low-student-to-counselor camp. She has taken nature walks, cooked, played lots of field games, gone swimming - typical camp things. On the second week, the flyer said, there would be an overnight camping trip. Drama Daddy and I sort of filed this information away, telling Miss M that that would be a decision that she could make later.

She made the decision. Tonight, she is sleeping under the stars.

Can you hear the diarrhea rumbling in my gut?

Yes. My daughter opted in.

She has been uncharacteristically gung-ho, bopping into the car at pick up, telling me about her day, how she is a "team player" and is "really, really playing the games. Even the competitive ones."

I have ever-so-slightly tried to get her engagement level out of her. She says that she talks to the other girls, and "tries to get in there" when she can. She's cited a few of the topics she's talked about with the girls. She took extra trail mix for her fellow campers.

I'm thinking that she is a polite and engaged camper. I don't think that she's the belle of the ball, but I don't think she's on the outside anymore. I think she is, as she says, a member of the team.

I had to call in the calvary today. Mama got a little spilkes thinking about the trip, and got a little clingy this morning, asking if I could comb her hair, and tearily insisting that she take my chapstick (she wouldn't take my Clarins apres-sun lotion, however).

Once friends talked me off my ledge, I decided to treat Roxie to a special day swimming. The really good pool complex is 35 miles away, in the suburbs. You have to take a very busy freeway to get there.

Did I mention something?

I have a terrible, terrible phobia about driving freeways and bridges. I can't and don't drive them, save for the Golden Gate bridge and the little freeway to the mall. I city drive like a champ.

I was in a car accident in my mid-20's, and, since then, I've not been able to vanquish this fear. (Don't judge me or feel sorry. I have a lot of other things going for me).

I took a cue from Miss M today.

I did something out of my comfort zone.

I got on the freeway.

I found myself at the first merge, heart pounding, hands slick with sweat, dripping on the steering wheel. I had to wipe my hands on my skirt. I hummed to myself, sang softly to The Who, prayed the Hail Mary. Roxie sat in the back. I could see her through the rearview mirror. "Take your time, Mama, " she said, "calm down." I kept thinking about the word anxiety, that this is what it was, and goddamit, how hard must it be for my kid to do things. Miss M was camping today, for crissakes. I could do this.

Admittedly, I had to get off. Drive alongside the freeway for a bit. Got back on. I did this for the 35 miles. Off and on.

It took me almost an hour and a half.

I got lost in the maze of suburb. I don't do well in suburbs. It all looks the same to me. I squinted at the rows of neat Fisher Price houses, at cul-de-sacs, and marveled at a kid playing in a sprinkler. He could have had two heads, for the intensity of my stare.

Roxie politely asked when we were gonna get there. I remained fake and cheerful, finally steering us into the parking lot.

We entered the pool area. I looked around.

One of these things was not like the other.

Mothers were tanned and leathery, wearing simple J. Crew shorts and utilitarian flip flops. They brandished huge tubs of sunblock, and rubbed their kids down in 30 seconds flat.

I showed up in Jackie O shades and a fabulous neon coverup - very Valley-of-the-Dolls/Sharon Tate-circa-1969 (though on me more like Bea Arthur in Maude). Roxie and I came in, city pale, with our Starbuck's iced coffees (hers an iced cocoa) and lounge chairs. Our sunblock had shimmer in it. Our snacks were not homemade peanut butter and jelly sandwiches, but ridiculous tiny baguettes avec fromage from the overpriced bistro in our neighborhood.

I felt like a shitty mother.

A stranger in a strange land.

We sat on our chairs, me finishing the last of Roxie's swim braids. She hugged me. "You look fierce, Mama," she said, picking up immediately on the fish-out-of-waterness of the whole situation.

Once in the water, we had a great time. Roxie is learning to swim, and her little face screwed up in determination makes me positively liquefy. She was jumping in and swimming to me, and I did the mom trick, you know, backing up a little more each time, fooling her into swimming longer and longer distances.

Pretty soon, she was swimming the length of the pool. She clung to my front. "We did it!" she crowed.

Roxie, exhausted, slept on the way back, while I hopped on and off the freeway, this time, staying on longer than I stayed off. I owed at least that much to Miss M's courage.

I thought about what I'd told Jess earlier in the morning. I told her that I was blown away by Miss M's progress; that this summer marked a whole new standard for the summer benchmark. I told her that suddenly, I looked up, and there she was, shockingly more advanced. It had seemed like we had been in an interminable holding pattern.

And here we were.

I thought about how Roxie and I took it in the pool, inch by inch, me cheering her on, ever ready to pull her out of the water should she get fatigued or crampy. We'd made progress.

I drove the freeway today. It wasn't perfect. It was on-off, and I hugged the far right lane. My biceps hurt from gripping the steering wheel.

But I'd made progress.

I'm looking up, eyes open. None of us are remotely in any sort of holding pattern.

We did it.

the mother of re-invention

2009-07-30T10:26:00.000-07:00

A loooong time ago, when my daughter was first identified as being on the spectrum, I crumbled. Went Cuckoo's Nest. Wore socks with sandals, maniacally laughed and cried - I really lost my cookies. We all know this. I've talked about it ad nauseam.

At this point, you're rolling your eyes and reaching for another Wheat Thin. Yes, Drama, we've heard this before.

Bear with me.

My sister, who is an expert in the field of Early Childhood Development (what are the chances, really?) was talking me out of my tree one night.

"What do you want for Miss M?" she sighed, sort of starting to lose her patience.

"I just-just-want-her-to-be happy!" I sputtered, not knowing what I meant.

"She is happy," she said, settling back for the inevitable A-ha! moment.

I was having none of it.

"No she's not! She- she-"

"She's different," my sister said gently. "No less happy."

It took me awhile (oh, like five years) to understand what she was saying.

That my happy perhaps did not equal Miss M's happy. That while I set about my work remediating my daughter and helping her find comfort with the things that set her off, I had to remember to keep the happy, the joy that was and is intrinsically so Miss M - present.

Don't get me wrong. In the world of where I stand, Neurodiversity versus Recovery, Biomeds versus Medication - I say this: Whatever works for you and your family. Truly. Only you and your family know the end-point, the desired effect, as it were. I believe in remediation and helping my child be the best, most authentic version of herself there is. There is no one magic bullet, no miracle cure.

There is this, however.

Choosing happiness. Seeing things from your child's perspective. Perhaps a sprinkler makes your child giddy with delight. Maybe it's garage doors, or trains, or YouTube. Let 'em have their happy. And revel with them.

I've been seeing this awesome therapist, this tough little Jewish lady (ah, my favorite!) who tells it like it is and takes no prisoners. She is alternately hard as nails and as sweet and bosomy as the mother I always wanted.

I was going on about guilt and "doing the right thing" and obligation, blah, blah, blah. Abuse and Catholicism will do that to a girl.

She looked at me, clicking her pen and crossed her short little legs, her brutally white Reeboks resting on her knee. She wears pom-pom half-socks, and that momentarily amused me. She took a long inhalation of breath and looked at me sternly/lovingly.

"Darling," she said (insert Long Island accent here) "life is to be enjoyed. Don't waste your time."

I was given permission to be happy?

What a mind-blowing concept.

I can say YES?

I can say NO?

I have the power to decide?!

I know. I know you're over there, crunching your Wheat Thins, saying under your breath, Oooooh boooy, Drama, don't waste your money on any more therapy.

Keep crunching your crackers, friends.

It has opened doors for me. At 43, I don't have to do anything I don't want to do.
(I mean, I have to floss and take out the garbage and work, for crissakes, but you know what I mean)

Let's practice, shall we?

Drama, can you make 5 dozen cupcakes for the ballet recital? Uhh, let's see. Hmmm. Uh, that would be a NO.

Drama, would you care for another champagne cocktail? YES.

See how easy that is? It's like deleting emails from your boss. It feels so good.

This time of year is always sort of exciting for me, as it marks the beginning of a new school year, measurable growth. I, too, get to join the fun as I, too, work in a school, and my students do a pretty good job ensuring that I learn as much, if not more, than they do.

This year, I'm employing my new technique. YES. NO.

And how 'bout my own lil' addition? MORE.

What does this have to do with my kid, autism, and the Lion, the Witch, and the Wardrobe?

Well. It's sort of a stretch, but I'll try.

Don't accept what people say about your child as truth. It's their truth. Not yours.

You'll work your little fingers to the bone to help your child. I know you will. You're good like that. Just keep your focus on your front yard, and tell everyone else to watch their own, if you know what I mean. You know exactly what your grass needs to grow (okay, I'm talking about your kid, but I'm lousy at metaphors. Sue me.)

Say yes to the happy. You don't have to love the elevators, the repetitive toilet-flushing, or the trains, but oh man, do love the smiles and laughter that they bring. That's the really good stuff.

And the thing I really want to bring home is YOU. ME. Preserve the sacred happy that is yours. Accept things or don't, but please - not for a second - do things that you don't feel absolutely good about (remember the champagne cocktail versus the bake sale). Don't let anyone or anything rain on your personal parade.

I'm going to save you thousands of dollars worth of therapy and give you what I've gleaned from hours on the couch.

Life is meant to be enjoyed. Don't waste your time.

we are family

2009-07-23T09:34:00.000-07:00

Kyra nailed it.

"Sometimes, you know, you feel their separateness. And you ache for them."

It was a spectacular visit. The Drama family visited the Wilsons. This Mom came down to cheer, lend her vivacity and love, and truly, the roof could have blown off Jess' gorgeous home with the outpouring of love. Trust me.

My kids, in particular, were met with open arms. I could feel Jess quaking to hug Miss M, waiting for the right moment to embrace her. She didn't want to overwhelm. She's good that way. What struck me is how sensitive we mothers are; we've learned to watch signals, give space, give pressure, give hugs, give cues. Give snacks.

I watched my friend Jess, who is a force. I should tell you that upon meeting Jess, you might be intimidated by first glance. She's the cool blonde with the expensive hair and the fabulous car, well-appointed and impeccably styled.

That lasts for about a minute.

She's warm. Literally and figuratively. She wants to welcome, to feed, to connect. She laughs big. Teases hard. Loves gently.

We were thrilled to get the kids together, these kids whom we've been talking about for ages via email and blog. They are just as incredible as we've described. Strong, smart, equipped with coping skills beyond reproach.

And yet.

There were moments.

Moments when I still well up when I realize that Miss M is still engaged 8 hours into the day. When I see her effortlessly play soccer in the yard with the rest of the kids even though we tried her delicate system with a nerve-frying day in the middle of Quincy Market on a hot, humid Friday. "She's still at it," I kept murmuring, as Jess or Kyra nodded knowingly.

I saw it in Jess' face. Her Kendall needed a break from the input (oh, and there was input). Jess would keep a close eye, as we all do. Sometimes, I sensed a sadness if she felt that Kendall was missing out of a particular activity. Her beautiful face would crumple for a millisecond. She wanted her in all the photo shots. I know this. You know this feeling, don't you? It is not unfamiliar to any of us, I'm thinking.

When you feel their separateness.

I don't mean to sound like everything was deep and meaningful and sad. It so wasn't.

But the moments. I think about them a lot.

What makes me remember that life is comprised of all kinds of moments is that with every moment that gave me (sad) pause, there were moments of joy. And the realization that my kid has her people.

There was no doubt at any point that weekend that Miss M was completely safe in that environment. That Kyra, with her yoga cards and her unbridaled joy at every utterance from the girls, got them. That Jess nearly burst from love and restrained herself from devouring the children whole. Our kids have fans. They have the people who get them.

After our Lovefest, we returned back to the Conservative Inlaw Compound. We were met with stodgy indifference, or worse, subtle judgment.

Suddenly, Miss M retreated into herself a bit. She engaged, but was going through the motions, as I am saavy enough to discern at this point.

I asked her if she'd like me to help her socialize a bit more with the family.

"Mom," she sighed. "Some people...some people are harder. Jess and Darby and everybody over there were easy. It's like you just have to get through other people."

I understand getting through and around people who don't love you, get you, revere you.

Our kids know their people. Who to trust. Kindred spirits.

A little after leaving, Miss M quietly sidled up to me. "Mom," she said, her eyes locked on mine. "Mom. Was I like Kendall when I was little?"

My heart nearly pounded out of my chest.

"Yes, honey. Yes, you were."

"Sometimes I had a hard time. I'm okay, though. She's going to be okay."

She said it as if she were convincing herself of her own well-being, as much as her new friend's.

Our kids know their people.

Our job is to be their people, ever-ready with a safe place and loving space to be who they are.

The love. The love space demands.

magical thinking

2009-07-09T21:18:00.000-07:00

We were at the local Tokyo desert shop near our house. They serve Pinkberry yogurt, bubble teas, Teriyaki chicken on a stick. They have bubble machines filled with Pokemon figures that you can buy for a dollar, and, best of all, a huge claw-grabber stuffed animal machine gleaming in the corner. The girls and I stop by for tea, or a yogurt, and I read the paper while they agonize what to spend their dollar on, or simply watch Sailor Moon on the huge flat-screen TV in the sitting area.

It's a pretty cool place.

One warmish evening, the group trudged down to the Tokyo Stop en famille, with strict instructions that each child would be given $2 each spending money. The girls immediately blew $1 on Pokemon eraser tops. Roxie buzzed around the claw machine, looking longingly at the stuffed animals (the one item that will fell that child quicker than Samson and his damned hair). Sitting at the table, sipping on my coffee, I offhandedly tossed over my shoulder that "those darned machines just eat your money" and discouraged her from spending her last dollar on a wasted turn.

Roxie set her plump little lips in a determined line. "No. I'm pretty sure I'll get it." She stood before the machine, feet shoulder width apart, standing as if she were going the throw a discus. "Daddy," she said, all business. She held out her dollar. "You do this for me." My husband told her that he didn't want to take responsibility if she didn't get anything. "Nope," she said, "I'm pretty sure that I'll get something really good."

My husband took the joystick and concentrated. One the first descent, he went for a smallish animal on the top of the heap. It slipped through the claws like a grain of sand. Roxie stood by, watching intently. On the second descent, the claw went for a large heap. And miraculously clung on to a large Winnie the Pooh in an inner tube, conspicuously the largest toy in the case.

It hung on until it hit the exit chute, and slid easily down. Roxie calmly opened the door, took her toy, and smiled at me.

She came over, her cheeks pink. "Mommy," she said, "See? It's like this: Whatever I want to happen, I think like it already is true, and it just comes to me."

I was confused. A little nervous.

I didn't want to crush her confidence. Didn't want her to think that life hands her things on a silver platter. I made some noises about not presuming things, and patted her on the head.

A week later, we were at a county fair. Again, we found ourselves in the god-forsaken game galley. She surveyed each booth carefully, taking in the toothlessness of the carnies, the difficulty of the games, and of course, the quality of the prizes. She settled on a booth with 5 foot plush animals. It was the booth with the nicest merchandise, and again, the most difficult skill level.

She nodded at her father. "Okay. This is the one. Do your stuff." She handed him her bill from her clutched group of five. He again opened his mouth to prepare her for disappointment.

She held up her tiny, cotton-candied hand. "Don't worry about it. Just do it."

My husband tossed a red ring towards the impossibly arranged milk bottles. The ring centered on one, then skittered off. He turned his back and started walking away. "WINNER WINNER WINNER!" the carnie yelled, as we turned to see the ring still spinning and ultimately land on a neighbor milk bottle. The move, my friends, was near impossible.

Because the disc was red, it was the highest level of prize. She won a 5 foot soft and elegant Bassett Hound. (I know, right? What are the chances of the toys being any good?)

Roxie threw the dog over her shoulders like a miniature gladiator and walked around proudly. She would be the sole winner of that caliber that day. She smiled and gave nodding passerby the thumbs up.

It would be easy to say that Roxie is spoiled, or feels entitled.

But in true Drama fashion, my kids ain't easy.

She isn't spoiled (well, I mean no more than other kids her age. We do have our penchant for pretty dresses and yummy deserts). She doesn't presume things. She gives as good as she gets.

She's a magical thinker.

Roxie sees things as absolute. There is no black or white. Do or do not. There is no try. (Okay, that's not Roxie, but Yoda. But still good, right?)

She performed at summer camp last week. She was in the youngest group. Watching her, she possessed a calm and maturity unlike any other kid onstage. She knew all of her steps and spoke in a loud, clear voice. She cued the kids around her who began to crumble. She nodded encouragement and gave them thumbs up. She beamed, and threw her head back, pink cheeks like creamy cupcakes.

Afterward, I asked her how she felt. "Well," she said, chewing thoughtfully on her spaghetti, " I was nervous and had butterflies in my tummy...but I figured that we worked so hard on the play that I should just go for it. Otherwise, why bother?"

I've been thinking about Roxie a lot lately. She fully experiences everything. "Wow! Cheerios!" she'll crow in the morning.
"Yessssss!," she'll say, pumping her fists. She high fives. She remembers people's names, and makes it a point to personally address them. She makes pictures and projects for the neighbors, and compliments the mail carrier on her new haircut. She has dance parties for one after school. She sees experiences as opportunities to connect. Where her sister surveys the world and makes discerning choices, Roxie embraces it all, sucking joy out of the marrow of life. She drinks it down to the last drop. She's good natured about it. "Hey, that's your pierogi," she'll say, bastardizing my use of the word prerogative, but somehow, charmingly, making it all her own. Her brain doesn't have time for doubt. She is too busy thinking good thoughts, expending good, even, happy energy.

The world responds in kind. People gravitate to her. The universe yields.

Today, I took my first formal voice lesson. It was expensive, and I wrestled inwardly about whether I should spend the money at this late stage of my career. As a kid, I wanted voice and piano lessons, but my mother told me that my ballet classes cost money, and that I could have one thing that I was good at.

I was trained to be limited.

I sang, wobbly at first. As the hour wore on, I worried that I was wasting my money as I visualized and employed my diaphragm. Then Roxie came to me. I should just go for it. Otherwise, why bother?

I finished the lesson with marked improvements. I wasn't perfect, but better.

It seems that my children are constantly and tirelessly teaching me. It looks like authenticity has two different faces in this family.

And that magic comes in many forms.

authentic

2009-06-24T08:27:00.000-07:00

Hello, you.

You're looking good. Lose some weight? Change your hair?

I know what you're thinking. Slacker, Drama Mama. Nice of you to show up.

Thanks for scooting over on the sofa.

I could bore you with the details of this last semester; how I am working on setting boundaries with my family, friends, students, and work - how I am learning to say NO, how I can't save the world, how I am seriously overworked, and because of that, see prior statements regarding boundaries.

So. Yeah. Whatever. It's been miserable.

What I DO want to tell you about are my kids. You've met them, haven't you? Miss M, who continues to grow at a quantum pace, who is so elegant and self-possessed that I'm starting to feel like a schlub around her. Roxie, who is taller, stronger, and smarter than I'd ever realized.

So even though I've sort of been neglecting my garden, my flowers bloom. I think I set a good foundation.

Or use good fertilizer.

So. I know you autie mommies want to know about, you know. The one. The one who is not neurotypical.

I'm asked frequently - especially from moms whose kids are younger - what to expect. What does ten look like? What do you see ahead?

It's been unbelievably easy. Occasionally rough.

The day that she was blown off by her best friend from early childhood had me palpitating in the car. Let me explain.

Miss M had a sleepover at her best friend's house. She came home at noon, exhausted, and retreated straight to her room. They'd been up all night. I took Rox and her friend to see UP, a charming but otherwise quasi-depressing animated film. We stood in line. I noticed a gaggle of girls about ten, and recognized a few from Miss M's old school. And there, in the center, her former best friend. I'd been calling her mom, trying to set up playdates, but our schedules didn't align. This kid has a lot of extra curricular activities. Or so it would seem.

I realized, by a quick calculation, that it was Emma's birthday. We were witnessing her birthday party. The first one that Miss M was not invited to. It didn't really register with me. Until her mother saw me and turned beet red. She stammered. "Oh, uh, hiiiiii," she said. "Uh, you guys seeing UP?" she said, forgetting that it was the sole feature at this landmark theatre. "Uh, uh, I wanted to invite you to our 4th of July thing - I , uh - " I nodded politely, told her to enjoy the movie, and sat the girls down.

It wasn't that Miss M was excluded. It was the reaction. Did she pity my daughter? Did she realize that Miss M had had a sleepover, a totally normal thing to do - with her friend?

I sat in the theatre, thinking. No matter. No matter how I rationalized it, how it really didn't matter, it still hurt. Her embarrassment became my own.

The movie started. I started to sob. Huge, wracking sobs. I didn't realize they were audible. Roxie peered at me. "You okay, Mama?" she said, her tiny hand in mine. "Oh, this movie," I said, "I feel so sorry for the old man. He's lonely," I lied. She didn't buy it. She climbed into my lap and rubbed my belly.

I had a hard day. I had to call people. I needed intervention. It wasn't about doubting Miss M; it was the rest of the world. We're a cool, inclusive group - but everyone else? Not so much.

The storm passed. It always does.

A week later, Miss M came down the stairs in her new skinny jeans. She is tall. Coltish. A knockout. She wore a sort of mod t-shirt with the jeans, and I scarcely hid my shock at her burgeoning maturity.

Her waistband pooched out. Her waist was too small for the pants.

"Here, M. I got you a new belt for the pants," I proffered the plain, brown thing that I had to scour around for. Miss M does not like a lot of ornamentation.

"Ugh. Mother. Not to offend you, but I find your taste somewhat -er - gaudy," she stage-whispered. "Please don't buy my clothes anymore."

A small voice yelled from inside the bathroom. "I LOVE the gaudy clothes you buy me!" she said, keeping the flow of sparkles and pink coming her way.

So I sit on my hands. And true to Miss M's way, she's paraded down in tasteful ensembles each day, each quietly elegant and muted. She likes neutral colors, soft, organic fabrics, and clean lines.

I step back, getting out of her way. Choices are all hers. I love the way she chooses fruit over desert, classics over trendy books. The way she likes no excess. How she has to pack waste-free lunches for herself every day.

On Father's Day, Drama Daddy had a work emergency, so I took the girls here, with our new membership. We hadn't all been there at the same time together, but Miss M had been there with a friend before. (Did you catch how casually I put that? Friend? Yup. And it wasn't Penelope, either. Another friend.)

Miss M lit up. She expertly got the map and checked for lectures. She demonstrated all the exhibits to her sister, and read the postings. Other parents around us complimented me on such a smart and friendly girl. "She's amazing," one mother noted, nodding toward Miss M explaining tide pools to a group of young children. We passed the teen interns, in their orange baseball caps. "Someday, mark this, I will work here," she said, determination in her eyes.

I nearly burst with pride watching her. I remembered how she used to run in circles as a child. How crowds were too much. How I had to hold her in my arms to explain about the penguins, so that she'd focus. Here was a tall girl, with glasses perched on her nose, her "Going Green" canvas bag slung on her shoulder, looking, for all the world, like an extremely cool preteen.

At lunch, I spied some other girls close to Miss M's age. They were eating burgers and fries. I asked my two if they were hungry. "I packed some trail mix and apples, but let's see what they have," Miss M consented gingerly. In true San Francisco fashion, the food court offered gourmet international foods at different steaming stations.

A huge smile broke on Miss M's face. "Pho Noodles! Banana leaf tamales!" she hurriedly went from station to station. "Mother," she said slowly, "I realize how expensive each entree is, but I'd like to know if I may try these dishes. They are irresistible," she said, studying my face. She doesn't like to ask for things.

"Rock out," I said, hefting a tray. She filled up on Pozole, Tamales, Pho Noodles. Guacamole. Spring rolls. She waved off the deserts, claiming that they were "empty calories".

I noted one thing. She asked the staffer at the Mexican station if the food was authentic. He smiled, showing his gold teeth. "Pos si," he said, ladling extra soup into her bowl. "Su hija es muy preciosa," he said to me, and I nodded.

She asked the Vietnamese staffer if the broth was meat-based, or vegetarian.

She is discerning, my girl. Knows what she wants.

We sat down to her feast, and she ate everything. Got her sister trying things, too.

At the gift shop, she spied a black yoga shirt with the galaxy emblazoned with (subtle) sparkles on it. She lingered there for a moment. I knew she wouldn't ask.

"I'd like to get this for you, if you want it," I said.

"Oh yes," she said. "It's extraordinary."

On our way out, the three of us stood on the sustainable, solarized roof of the museum. Miss M looked out at the expanse of Golden Gate park. "I'd like to see the King Tut exhibit next week, if I may," she said, looking at the posters waving in the breeze.

"Of course," I said.

We walked slowly back to the car, holding hands. All three of us. The girls chattered about the Rainforest.

I realized something. That my crystal-ball predictions have been useless. That the IEPs are done, the special services are done. Nothing left to do.

What does ten look like? What to expect?

She is one incredible, thoughtful and brilliant girl. She has far more going on that I can fathom. I need to step back and enjoy.

Authentic.

That's what she is.

decompression

2009-06-01T21:02:00.001-07:00

In case you've been wondering where I've been, I've been doing two things, well, three, really.

Working.

Parenting.

Getting therapy.

And not necessarily in that order.

Here, on the precipice of the final true workweek of the year (well, that's sort of false, because teachers never really stop), I emerge, sort of like The Swamp Thing, out of the earth, dripping with uncorrected exams and lame excuses, needy parents, and sleazy school officials who want to squeeze that one last thing out of you that's not really in your job description, but they need you to do it anyway, and, with, well, sweat.

I've had students pelt their vitriol, love, hate, resentment, and utter apathy against my office door.

I've endured lame assistants, a fabulous gay best friend, and a whole lot of people that I'd otherwise have nothing to do with, other than we work in the same building.

I know I say this every year, but this time I mean it: I am done. DONE.

Cannot look at or help one more nascent, pimply adolescent one more day.

I know you'd like to think that teachers are immune to challenging or hard-to-love students. I'd like to.

But we're not.

I'm not talking about our kids - you know -the ones who have good reason to be challenging. The ones, you know, with the interesting wiring? I could never, EVER, not love those kids.

It's the ones who feel entitled, the ones who think that I was hired just for them - the ones whose parents call me up and insist that I must make Binky's graduation party - because he loves you so - even though I've explained it's the first Saturday my family has had me to themselves in two months.

The ones who don't say thank you.

Or try when I go out of my way to help them.

But I digress.

It's about time management, really, and feeding the soul of the mother, the teacher, the worker - the creative side, the quiet side, even the side who needs her toes did and hair streaked.

My therapist looked at me today, in her neutral-yet-slightly-passively-judgemental-way and said, You don't have the time because you are not making the time for yourself. You don't want it badly enough.

I wanted to slug her.

It was like some Kung-Fu episode gone bad. Little Grasshopper, in all earnestness, is working her ass off trying to get better, feel better, be her authentic self with what resources she's got...and to be told that she doesn't want it enough?

Bullshit.

It was insensitive, and a little ill-informed of my well-intentioned, but no-kids-no-spouse therapist.

You know what I'm saying.

My therapist helpfully suggested that I quit my job - you know, the one that pays half the bills? - and get this:

Land a national commercial. Or two. That'd pay the bills for a year.

Um. I think that a few people have had that idea?

Like three million? I mean, really. Where do you think waiters come from?

I'd like to do my suggested one hour of meditation a day, my half hour work out, my hour of reading and hour of "connecting" with my spouse.

I would.

I would like to avoid collapsing in front of the TV at nine o'clock, after the school prep, girls' homework, dinner, and bath are over, but gee, I'm too busy drooling on the sofa, watching Jon and whats-her-name obliterate their marriage before the cameras.

Women get a freaking bad rap. To be one with yourself. To work. To parent. To wear a bikini and groom the various hairs around that area. To not show gray, and to keep the teeth white. To eat clean. To connect with the husband. To lovingly read the books to the kids. To be thin. Tan. Smart. Be a good financial manager. To have a Girls Night Out, throwing the head back, wearing the perfect pair of expensive jeans with some sassy heels, forgetting that all you really want to do is take a long fucking nap.

Those of us with special kids know. We've been to the puppet show and we have seen the strings.

You do what you can, the best way that you can.

And frankly, our kids have schooled us on this - you can't really look over and compare yourself to the neighbors next door, because, well, that just doesn't work.

We're our own thing.

Sometimes, we don't have the luxury of picking and choosing what needs to be done.

So, this is my plan - my scale-it-down-be-your-best-self-SELF-magazine-feel-good-plan:

Take it easy.

Go easy on myself if I miss that workout. Or meditation. Or whatever.

It's okay to simply watch TV with the kids, and if Mama falls asleep during iCarly, so be it. At least I'm in the same room.

Champagne is sometimes as good as meditation.

It is okay not to monitor the engagement-meter of Miss M. At this point, I'd say we're good, thanks.

It's time to stop self-critiquing my self-critiquing, and well, just, let it be.

I'm counting on you, my village of mommies, to help me

keep

it

real.

rip van winkle

2009-04-27T21:27:00.000-07:00

When Miss M was little, and we were going through identification, diagnosis, and receiving our Scarlet A stamp, Mama was going a little Cuckoo-for-Cocoa-Puffs.

I've written about this before. It's not news.

I was losing my bloody mind.

I was sobbing in the broom closet during the passing times at school, and then, remarkably, lecturing for 50 minutes, then as soon as the next bell rang, sobbing again in what seemed an endless cycle of tears.

I was pacing the house alone at night, talking to myself.

Calling my sister at four in the morning.

I couldn't touch books about Autism, or even google the damned word.

I threw up each time I picked her up from preschool and the teacher made a remark about her behavior.

I used to sob and say to myself, "If I could just have one day without thinking about autism...just one day where I saw Miss M for who she is."

Then, it seemed impossible.

The years seem to have slunk by, and now we are sitting happily ensconced in TEN. Puberty beckons.

Where the time went, I do not know.

How this marvelous child has developed and grown into such a beautiful and special young lady, I could not tell you.

I don't know where I was.

Going a little crazy, I guess.

Somehow, in spite of myself, I managed to raise a polite and empathetic girl with a killer sense of humor, a tremendous moral code, and goodness oozing from her every pore.

Where have I been? I often wonder.

What I marvel at, and what I gratefully thank the heavens for every day, is that I am awake now to enjoy it. My fear was that I would never retrieve myself from my pity spiral, and miss her formative years.

Somehow, suddenly, she stands before me, a fully realized person with thoughts and feelings and so much love to give -

and, thank God,

I am here to accept it and return the favor.

It's a little like A Christmas Carol, when Scrooge wakes on Christmas Day to discover that he still has time left, that there is still much love to be doled out, that life is not over.

It ain't over.

Not by a long shot.

After homework tonight, we all piled into my great fluffy pink bed and watched the end of Hook, the sappy Spielberg movie about Peter Pan. It is fraught with psychobabble metaphors, seemingly innocent story points becoming suddenly very significant and deep.

Miss M, of course, got every single one of them.

We know this about Miss M, you and I. We know that she vibrates on another plane.

That isn't what got me.

It was the way Roxie was draped around her sister, both of them entwined and smiling. Cracking jokes. Miss M explaining the psychology of the film to her sister. Miss M had her arm snaked around her sister, and she rubbed my shoulder.

Later, she rubbed my feet, smiling at me. Her eyes met mine easily, and we shared a silent moment.

I go days, even weeks, without thinking of autism now.

I just see her.

Really see her.

And it's not too late.

changed for good

2009-04-15T17:36:00.000-07:00

Who can say if I've been
Changed for the better?
I do believe I have been
Changed for the better

(Glinda)
And because I knew you...

(Elphaba)
Because I knew you...

(Both)
Because I knew you...
I have been changed for good...

From Wicked, music and lyrics by Stephen Schwartz

I'm on Spring Break this week with The Fabulous Roxie, whilst poor Miss M toils away in her expensive and oh-so-perfect private school. She had break last week. Jesus had to hang on the cross before we parochial school slobs caught a break.

Anyway.

Rox and I have been hanging out - planning extravagant, educational days (the Academy of Sciences, the Exploratorium, the MOMA) only to have our plans fall away, and find ourselves, say, waxing my eyebrows or getting a pedicure, or maybe, an hour in a bookstore with a coffee and extra-large BrainQuest book for her.

Roxie is easy. Beyond easy. She is a delight and fits my agenda like a glove. I'm not saying this because she's my daughter. She has it.

It follows her every where she goes.

The Starbuck's Barista gives her a marshmallow treat because she could just "eat her in that darling school uniform."

Her ballet teacher heaps solos and praise on her because she's so "special".

I have no idea what to do with her Student of the Month, Citizen of the Month, Lighting the Way for Others, Busiest Bee and the Good Neighbor awards - they are a little excessive and I worry about how Miss M might feel with the Roxie Hall of Fame lining the hallway.

I tuck them away.

It couldn't be easy to be her sister.

Right now, we are dealing with another little girl in her class being very jealous of Roxie for these very reasons. She wants her piece of the pie. And the harder this kid tries to lash out at Roxie, karma steps in and somehow makes Roxie rise above it, to be even kinder and more lovely to this kid.

Roxie had her lower lip protruding the other day; the kid threw a marker at her eye. The teacher disciplined the kid, while her classmates gathered around Roxie, giving her attention and concern. It backfired on the kid, and it made her even more wild. Rox unfurled it all in the car. She couldn't understand why this kid has it out for her.

Miss M sighed heavily.

"Roxie, Roxie, Roxie," she said, slowly shaking her head. "You can't know what other people are going through. You can only try to put yourself in their shoes.And try to be compassionate. Who knows what her life is like?"

I suppose the Social Thinking classes are kicking in.

I've stopped worrying about the possible rancor between the two kids - because, quite simply, it won't happen.

The relationship is symbiotic.

Where Roxie can so easily become spoiled and conceited, her experience with a special needs sister keeps her genuine and true.

And having a mercurial, demanding little sister has pulled Miss M inch by inch into this world and into her born role as teacher. Aside from that, Miss M studies her sister. Inflections and intonations creep into each other's patter, and often, I forgot who started doing what when.

Miss M's friend, Penelope, was over again the other day. Penelope has Asperger's. She stutters and stammers alot, she repeats herself and whispers to herself. Admittedly, she is hard to listen to. We're used to it. The girls were doing a large puzzle in the living room. Penelope was trying valiantly to get a thought out. She went on for a long time, stuck on half of a phrase. Miss M and Roxie sat patiently, faces waiting. Miss M murmured gently, "Mmmhmmm," a learned appropriate behavior to show the other person that she is listening.

Roxie's eyes studied Penelope's face. She said gently, "Take your time, Penelope," and handed the girl a puzzle piece.

Later that day, I took the girls to the local market to pick up marshmallows for the Rice Krispy treats we would make later in the afternoon. Penelope was talking loudly in line, perseverating on Pokemon. Miss M nodded and listened, asking polite questions. At one point she said, "Uh, Penelope... (whispering) inside voice."

Two men, a couple, stood behind us in line. As Penelope yammered on, I saw one man roll his eyes at the other. The other man mouthed "Jesus Christ" to the other, as if this child were offending him. Luckily, Miss M and Penelope missed the exchange. Roxie didn't.

As Miss M and Penelope rushed ahead to look at the DVD rental kiosk, I gathered my bags. Roxie looked solemnly up at the men. "She can't help it," she said, her eyes huge and dark.

The men flushed.

I've thought long and hard about what to write about Autism Awareness. I wish that I could be an advocate, a speaker, a fundraiser. An author.

I'm just a mother.

But I am a mother who knows this: That the experience of having my daughter-on-the-spectrum makes my family far richer, far more compassionate and interesting than not having her. Because of her, our immediate surrounding community thinks differently, and if they don't, then, Miss M or Roxie lets them know.

Believe me. They let people know.

In our small way, this is Autism Awareness. See others. Treat as you would like to be treated. Let other people know.

Simple.

The girls love a certain Broadway musical about the witches of Oz. They were arguing the other day about which witch was better.

Roxie: I'm Glinda. She's popular.

Miss M: Well, it's obvious that I'm Elphaba, because she has so many hurdles to overcome. (Yes, she is ten.)

Roxie: Glinda's costumes are prettier. She has a tiara.

Miss M: That's true. I can't deny that.

Miss M thinks for a few minutes.

Miss M: It's true that everybody loves Glinda, and that she is far prettier. That's her. But Roxie? Elphaba flies. She defies gravity, like the song. So guess what? We both win.

Indeed.

my fair little lady

2009-03-22T20:41:00.000-07:00

We were snuggled on the sofa the other night, watching My Fair Lady with the transcendent Audrey Hepburn. Miss M was riveted by the film, listening intently for most of the three hours - a little too much Shaw for me, but if you're Miss M, it's pure heaven.

Henry Higgins berated Eliza Doolittle for something - her diction, a spoilt diphthong - something. Miss M slammed down her pillow in protest. "Excuse me, but he is just a sexist pig," she proclaimed, pointing at the television. Usually, I ask questions about how characters are feeling, what their faces are saying - but this time, she told me. "You know, I was with him when he wanted to help her," she started, pausing the scene, "but this stuff of having her change who she is - why, that's just wrong. Ugh. And the way he talks down to her," she shuddered, snapping the remote for more torture.

We talked a bit about the film after it was over. Miss M was aghast that someone would have to change for someone else -to not be their "authentic self". Miss M shook her head, "You know, she was an original the way she was."

I imagine that it resonates with her on a subconscious level a bit, because, in a strange way, that is what her life has been. We, along with every other teacher, therapist, and doctor, have asked her to bend for us, to go against what is natural for her and to be more, well, like us.

We ask for appropriateness. We make bids for shared attention. We jump and run and exercise to quiet the body so that she can ground herself, and attend to the myriad things we need her to attend to.

I imagine that it must be a little like Pygmalion - being rebuilt into a new iteration of oneself.

Our intentions, of course, are good. We have helped her in innumerable ways to cope with the world she was born into, given her relief with those things that gnaw at her, that make every day chores difficult.

But I've always wondered about the words. Intervention. Intervening against what? More autism? Whew - better stop now before it gets worse? Remediation? The definiton says that it is the act of correcting a fault or evil.

Huh.

I don't wish to correct my daughter. I do wish to help her be able to nimbly cross between both worlds - mine and hers - so that the bigger, noisier one is a little less jarring each time she steps foot in it. The more time she spends in it, the easier it is for her to make the transitions.

She has friends. I suspect that most of them are on the spectrum, judging from my interactions with them, but I do not know for sure. I do know that Miss M is starting to notice things. She worries about her friend who passes gas in public and seems not to notice anything wrong with it. She worries about another friend who picks her nose, and well, sometimes, when she thinks no one is looking, munches on a booger or two. ("I don't think she realizes that I can see her do it," she says, eyes wide) Just today, her friend was over and the children were snacking at the kitchen table. Roxie asked the friend a question, and when she did not get an answer, repeated the question. The friend went on and on with her topic. Miss M shifted her eyes from Roxie to the friend. "Um, Friend? My sister is trying to get your attention, " Miss M said quietly and sweetly, trying to be helpful.

Over time, unbelievably, she has started to absorb all of the gentle and not-so-gentle cues and suggestions we've given her. I see it now; I see her seeing it in other people. It is her shared experience that makes it so sweetly acceptable; that she is helping others navigate this very, very confusing world of signals, connections, planes and trains.

My hope is that she does not feel, like Eliza Doolittle, condescended upon, dissected, or examined.

I do want her to feel glorious, to wear a gown and feel free, to want to dance all night, to make connections, and, frankly, when she needs to, hang out with the things and people that make her the most comfortable.

I just want the road between the two places to be less bumpy, and more easily accessible.

And you know?

By George, I think she's got it.

golf claps all around

2009-03-15T11:31:00.000-07:00

Happy Tenth Birthday to the extraordinary Miss M.
You've surpassed all my expectations.

It's your cue, baby. Take it!

shifting

2009-03-13T08:15:00.001-07:00

I complained to my friend the other day that I was remorseful that I did not find Dream School until Grade 3 - that Miss M had to endure some grey years that did nothing to help her. The school tolerated her, with a sense of noblesse oblige which for me, was unbearably painful.

She was in Kindergarten, and she was melting down a lot. She had a para for an hour a day. (!) The teacher was tough; when M started melting down, she would firmly hold her arms and tell her to trust her.

And then she left my crying daughter at her seat and tended to the other 19 students in the class.

So yeah.

You get the picture.

We went to the K Open House, and I remember that the first activity they did was to have the kids do self-portraits, which is something that they typically do to check self-perception and development. All of the kids drew happy faces with eyelashes and colorful outfits, some with a sun shining on them - some with fully defined bodies (a mark of how developed they were). My eyes eagerly scanned the display for Miss M's. Hers was an oval with an angry scribble on top of it.

It was in the center of the display.

Sort of like a scarlet letter.

The teacher watched me as I looked at the display.

"She was having a bad day," she smiled weakly.

When we got home, I cried and asked my husband why the teacher could not have taken her aside and either helped her, or waited until a better time.

It was embarrassing. And it was prominently displayed.

Why?

Why shame my daughter? Why shame our family?

Shame, I think, plays a huge part in the lives of autism families. No one admits it, of course, but I see fellow mommies anxiously following others' eyes as their kids melt down, flap, or spin. Some don't, of course. Some of us are just plain tired.

But deep down, in some, there is shame.

Okay. I'll say it. I was ashamed.

And it had nothing to do with Miss M. It was all to do with me; historically, I have never been good enough. It has manifested in perfectionism and achievement, and impossible standards set for myself and my students. That is why, my friends, I am the perfect employee. The perfect program director. The perfect administrator.

To have a child with a blemish, a difference - well, it was too much. I saw every comment and glance as a judgment on my daughter, and by association, on me.

Over time, and with lots of professional help, I have come to realize that these are my demons; that Miss M is perfectly Miss M, and that I have been blessed with the daughter who was perfectly designed for me.

I've stopped pleasing people. I say no. I set boundaries at work, and in social settings.

And funny thing? It only makes me better. Stronger. More efficient.

Interestingly enough, as I insist that people take me, take my daughter, as we are, the skies have opened up.

Miss M is in her perfect school, with her own friends. The world not only accepts M. It loves her.

Quick story: Miss M really wanted to take a yoga class in our neighborhood. Roxie's ballet studio was starting yoga for a variety of age levels. The only interest was Miss M's - and a group of 5-6 year olds.

The teacher offered her the position of class T.A.

Miss M adores her class. She loves the leadership role, but I think, deep down, that the young children offer no challenge - just their pure, unadulterated adoration of her. Of course she loves it.

There is an upcoming recital. My husband looked at the flyer. He told me that he is not sure that he wants to subject her to public embarrassment by having her perform with little kids.

The teacher has cleverly designed a circus routine with Miss M as the ringleader, with tiny circus animals.

In spite of my husband's reservations, I have put down my pink-toenailed foot.

She will perform. She will be who she is, and damn the rest.

And the lovely part? The teacher has given her a leadership role. The world is accomodating my girl.

The world can bend. Open its arms.

Miss M turns 10 on Sunday. It's taken me eight long, hard years to figure it all out. But you know? It's not too late. It's never too late,and that, my friends, is the odd beauty of autism. It can change, it can shift.

Or it might not.

But it is never too late.

Oh. And that self-portrait? I picked up Miss M from school the other day. In the Multi-Purpose room, there is an enlarged color picture of Miss M, solo, dancing and smiling in the school play.

Right in the center.

Right where she belongs.

gleaning

2009-02-24T07:56:00.000-08:00

Life is kicking my ass right now.

Or trying to.

Let me give you the Cliff's Notes version: I am now in therapy for stuff that I should have been in therapy for about 25 years ago...and I am uncovering things in the garden that are wormy, fraught with beetles, and emitting a rancid stench. I'm a little shell-shocked, but in excellent hands, and relieved in a sort of Bell Jar sort of way that I can let 'er rip and see where the chips fall.

What I can tell you is that I am dealing with my ability to receive. Receive love. Receive compliments. Receive feedback. Anything. Funny, huh? The very public persona who can perform and work an audience in the palm of her hand is a big fat wimp when it comes to kindness or truth.

I suppose, my friends, that is why I chose to perform.

So I'm not trying to make you my therapists or anything. Just telling you what's going on.

And how the following is changing my mind.

I was talking to my friend Jess Wilson, (who is a professional when it comes to good girlfriendliness), and I was, uh, er, a bit hung over from my Oscar party the night before. My girls were snuggled in my bed watching a musical, and I snuck into Roxie's pink palace to take the call.

Soon, Miss M opened the door. "I don't mean to interrupt you, but is there anything I can do for you? Coffee?" Her face brightened as she asked, because my Tassimo pods make her feel like a Barista.

"Oh yes, yes, excellent idea!" I enthused, rambling on with Jess.

Soon, a tiny hand opened the door. Roxie said simply, "What can I do for you?" hands outstretched, a tiny replica of her sister.

I asked her to make some dry toast.

She disappeared as quickly as the Road Runner, cartoon puffs flying behind her.

My girls offered me my breakfast on plastic plate, steaming coffee sealed up in a thermal mug by Daddy, lest Miss M get shaky with the hot liquids coming up the stairs.

I fell asleep.

Later, I heard Roxie and Miss M playing in Roxie's room. They were going to town with some paper dolls, and I stretched on the bed, listening.

It was intricate role play, with Miss M playing a whole cast of characters, each with a moral code. Her tenderness and love of her sister nearly undid me. I listened to their voices and silently wept on the bed.

Yesterday, I picked up Miss M from school, who bounded up to me and hugged me so hard I nearly fell over. Her friend teasingly wouldn't let me go, because he wanted "M to stay with me forever." I watched as my daughter hugged her friend and told him that he could have her all tomorrow, at recess and at lunch.

Later, I saw my therapist as the girls stayed with my friend, who also has two girls. When I picked up the kids, my friend greeted me at the door, with wine in hand, holding a magazine.

"This was the best afternoon of my life," she said. I asked why. "M helped the girls with their homework. She had them clean up after snack and them had them upstairs playing a game. She has the patience of a saint."

I smiled and said that yes, M is doing well, she's come a long way.

My friend grabbed my wrist. "You need to hear this," she said. I could smell her Chardonnay. "She is amazing by any standards. Your daughter is simply an extraordinary little girl. Period. Now stick that in your therapy pipe and smoke it."

And with that, we ate cookies and sipped wine.

Miss M continued being her charming self, but it was at the dinner table that I really heard it. Her father asked how her Girls Social Group went at school. "Well. I had to let Ms. C know that I was upset. The boys were picking on my friend at recess - you know, saying that she was a stupid girl and stuff because she couldn't play the game - and I was upset."

We looked and each other and I asked how she handled it. "Well. I figured that the boys were behaving like typical pre-adolescents. (Yes, she said it) I managed the situation by telling my friend that she wasn't any of those things - that she is a wonderful person, and that boys were projecting something on her that had nothing to do with her."

It's taken me several sessions and a cracker jack therapist to arrive at the same advice that Miss M is freely doling out on the playground.

This child, the one whom I never thought would look up from her own world is now navigating through it with so much love, empathy and confidence that it takes my breath away. Who is creative, empathetic, loving - and smart - all of the qualities we were told, that, frankly, she'd never possess.

Miss M. How she's grown and changed and morphed into the most beautiful butterfly.

I'm taking a tip from my daughter.

If she can fly?

So can I.

love profusion

2009-02-13T17:22:00.000-08:00

I was having a hard time of it the other day. Well, to be completely frank, I've been having a very hard time of it most of the time lately.

But that's beside the point.

I was doing my daily one liner email exchanges with the inimitable Jess Wilson, she of autism advocacy fame, and wearer of tall shoes. (She made me link her and forced me to introduce her with plenty of laudatory comments. In fact, if I could, I would adorn her name with glitter effects, but alas, Blogger hates me and won't allow me to do so. So trust me when I say this chick is the bomb.)

I was boo-hooing it to Ms. Wilson when, in the midst of our exchange, she sent a flurry of emails each in a 15-second succession:

You look great! Did you lose weight?

Did I mention how much I love you?!

No - I mean it! I really love you!

Did you cut your hair?

And so on.

I laughed, shaking my head and murmuring things while I crafted my return email to her:

A 72-point font reading I LOVE YOU in curlique red letters.

I typed her name in the name bar, and under the subject line wrote:

your juicy @ss.

I hit send.

A few minutes later, I received an email from a fellow teacher. A teacher that I have never spoken to. Let's just say that he resides in the Math and Sciences part of the world, and you wouldn't really expect us to have much to say to one another.

In large, bold Times New Roman font, he wrote:

I LOVE YOU, TOO.

Confused, my eyes dropped down the email.

Apparently, I hit the wrong choice on my name bank. I hit the name of another "je" person...someone NOT Jess Wilson, and definitely NOT the owner of a juicy ass.

The next day at our faculty meeting, I saw my new friend standing in line for coffee while we assembled for our break out groups. He motioned for me to cut him in line, big goofy smile on his face. He complimented my rosy pink sweater, lingering a little on my big tits.

"Someboddddy's got a boyyyyyfriend..." crooned My Gay, as he took me by the elbow so that we could dissolve into laughter in the crevices of the school library.

It's the running joke. I can't tell you how many joke emails I've received from My Gay, or big smiles from my balding, pear-shaped, middle-aged, single, would-be lover who spends far too much time in lab.

He's happy. He feels good. I'm gracious but not sending messages; it's all very sweet and innocent.

I have a thought, though.

Just the way I felt when Jess bombarded me with her email barrage of love, I'm sure that is the way Mr. Science felt when he received an I LOVE YOU note from a distant acquaintance.

He has a pep in his step and smile on his face.

What if we all sent little love notes, little random acts of love or lust to people as a little project? Spreading the joy to people that we rarely connect with?

How about a You look fantastic today to the receptionist at your job?

I appreciate you to your kid's coach?

I love the way you cover my gray exactly right to your long-suffering hairstylist?

What would happen if you got a flurry of love in the middle of your day, for no reason? What if the country lit up at the same time on one day - lit up with nothing but LOVE sitting in inboxes instead of spam?

It'd be a new kind of stimulus package for sure.

Happy Valentine's Day.

I love you.

And you look fantastic today.

a torrent of emotions

2009-02-12T13:41:00.000-08:00

Miss M is growing up. When last we chatted, we took a look at her burgeoning social skills; her perspective taking and self-regulation.

She has a new thing.

Feelings.

Miss M is becoming expert at expressing her feelings. As a matter of fact, she can't stop talking about them.

This morning, for example. We are rushing around, packing bookbags and zipping up raincoats. I am to take Roxie in to school, Drama Daddy has Miss M.

I look up from Roxie's zipper. "Miss M," I start, pushing a strand of hair out of my face, "don't forget to comb your hair."

She turns on her heel.

"Mo-ther. Don't you think I know that I have to do my hair? I feel like you assume that I'll forget. It makes me so frustrated. I feel like you are lowering my self-esteem. As IF I'd forget, " she huffs.

Um. Well.

I mean, yeah, she does forget. Sometimes.

But I was innocent in my reminder. Swear.

She comes back in, brushing her long, full, golden hair.

"I mean it, Mom. It hurts my feelings when you say stuff like 'M, get on your homework,' or 'M, did you take a shower?' As IF, Mom. AS IF." She angrily flicks the brush onto the table.

"I mean, I USED to space out all the time. But have you noticed lately? Really looked at how together I am?"

I watch her struggle with her shoelace, but say nothing.

Roxie looks up at me, chewing her toast. She puts her finger to her lips, reminding me not to remind M about her Wednesday envelope. Better to let her discover it herself, in her new organizational state.

I put on my overcoat, Roxie at my heels. We open the front door. Miss M follows us out to the front stoop.

"I have a lot to deal with. Please consider my feelings before you blithely (yes, she said it) nag me to do something that I am already well on my way to doing."

I peck her on the cheek and start down the stairs.

She leans over the balustrade.

"Are you going to tell me you love me?"

"I love you, M. Have a great day."

Roxie blows a kiss.

"Don't forget next time," M huffs. "You might lower my self-esteem if you do."

And with that, she quite literally spins on her heel and tosses her hair, closes the door. Hard.

Roxie and I sit in the car in silence.

We defrost the window.

Roxie sighs.

"She sure has a lot of emotions now."

I sigh. "Yep," I say, exhausted from my emotional beat-down.

"Remember when she was so quiet all the time?" Roxie chews on her limp toast wrapped a soggy napkin.

"Mmmmhmmm," I say, flipping through our CD's.

"It's an improvement, I guess," Roxie says, looking out the window.

"I guess," I say, chuckling to myself.

Of course, it is an improvement. I know it, and so does the whole house. It's much more age appropriate, she is able to articulate exactly what is on her mind. And in her heart.

There's something about it, though...the two steps forward, one step back...the slamming doors, the whispers to her sister, the yelling through the door for privacy. What is it? Hmmmmm.

Ah.

Got it.

I think we've got puberty, Houston.

Strap on your seatbelts, people. It's gonna be a bumpy ride.

the ship has landed

2009-02-05T09:30:00.000-08:00

This morning, it was damp, grey and drizzly, and I stood, at 7:30 am, underneath an umbrella in the cold.

But I was warm inside.

I have this new job. I am the "Traffic Parent," twice a week at Roxie's school; I open the doors of unloading cars and help the children into the schoolyard before school begins. "It's the greatest thing you've ever done for me," Roxie sighs. It makes her proud to see me smile and wave on cars.

I feel connected to people as I wave and smile, wishing them good days at work. Usually they respond in kind. Sometimes, they smile shyly. And this morning, one father grumbled, "Just close the door!"

No matter.

I am now a presence, an entity at both my children's schools. I flipped through some old posts the other day. What I read is longing, longing for community, a team, fellow parents to have my back. Last year, before Miss M moved to her small private school, she was in a large public school with no real social supports and no real need for academic help. We were screwed. Parents at that school were cliquish, and our family fell through the cracks. It broke my heart to attend school functions and watch my daughter literally be a ghost in the room. I didn't volunteer because it hurt too much.

Fast forward. Miss M strides confidently around the playground after school, waving goodbye, calling to kids, making arrangements for playdates. I volunteer for everything. I am a parent ambassador. I recruit new parents, listening to the tears, offering my number and bear hugs. The school has a funky staff, devoted to their charges. Students are kind, empathetic and helpful to one another.

At Roxie's catholic school, it's a whole different world. Diverse, working class, people are cheery and welcoming. Children are polite, opening doors and using the very formal "Mrs. Drama," when they address parents. There is an old-fashioned air - alot of cafeteria boutiques and baked goods - but it is familiar, comforting somehow.

The other morning, the two school philosophies became apparent as the girls played in Miss M's room.

Roxie: Miss M, may I color that poster with you?

Miss M: Rox, I'm almost done. I'd like to finish this myself. Here. I have an
extra that you can do by yourself.

Roxie: But I want to do yours.

Miss M: Sorry. I'm going to be firm on this.

Roxie: That's not living in the light of the Lord, M.

Miss M: Well. Perhaps you're not considering the perspective of the other person.
Did you notice that I was hard at work on this for the last half hour?
How do you think I feel.

Roxie: Well.

Thinks a moment.

Roxie: What would Jesus do?

Miss M: Jesus, Roxie, would consider the feelings and perspectives of the other
person.

I lay in bed, listening to them. Marvelling that they play together; Miss M no longer sits solo in her room, reading. I secretly high-fived the social skills teacher at Miss M's school; this program obviously rocks.

Two very different schools. Two very different philosophies.

Same message.

It's been a very rough road. We longed for a place for Miss M for a very, very long time.

Our ship landed.

Our people have come.

And the bonus? Roxie has her own damned ship. Go on with your bad self, Rox.

There are many things in this world that I covet - talents, material objects, okay, hell, I'll be blunt - I really, really like jewelery.

But to have happy, well-adjusted children who love where they go every day?

No contest.

Priceless.

Hang in there. Sometimes it takes them awhile to find you. But they come.

Oh yes.

They come.

love

2009-02-01T19:22:00.000-08:00

This made my day.

so i borrowed something from you

2009-01-18T22:23:00.000-08:00

They just left.

Remember them? The blue-blooded hardcore east-coast versions of these?

When last we visited with them, it was on their annual weekend visit to Spend Time With the Grandchildren.

You might remember that I am not allowed to divulge that my daughter speaks French, or rather, that she tipples from the spectrum nectar. My husband requested this when she was identified so many years ago, to save harassment from two individuals who surely would have never let us alone if they know this information. This was not my decision, and since we rarely see them, it is none of my business how he deals with his fractured family - I'm just doing my best dealing with my own.

Um.

It's really stressful.

I have gently alluded to Miss M's "speech issues" and her "sensitivity to things". It's like being African American and trying not to show it. You are what you are, you know?

Miss M, for her part, "blends" more and more, and it is less of an issue than say, when she was spinning in circles when she was five.

But still.

Throw into the mix the fact that these people are highly competitive New Yorkers, who hang on things like test scores and schools, and class and caste; I have a hard enough passing muster because I'm brown. Well. Beige. But you get the picture.

For those of you wondering, Miss M was brilliant. Breathtaking. She was polite and funny, conversant, and her manners are impeccable. She sat, in 5-star restaurant after 5-star restaurant upright, napkin in lap, elbows carefully off the table. She hissed to her sister that she was chewing with her mouth open, and bent over and whispered to me during dinner, "What would be an appropriate subject to discuss right now?"

Of course, as you know, I am constantly checking myself and trying not to look for things in my daughter like deficits or quirks or behaviors. I tried not to have those "screw-tin eyes" as Kyra is fond of quoting. But it's hard not to check the in-laws' faces as Miss M will say something like, "Look at how adorable that ginger-haired tyke is!" in reference to a lunching red-haired toddler one table over.

At one point, Miss M excused herself, saying that she needed "a moment of space." She disappeared into the restroom, splashed some water on her wrists, took some breaths, and returned to the table, smiling. The regulation, my friends, is expert.

Ex-pert.

My Type-A in-laws got squabbly in the car as we decided where to go for dinner. Miss M chirped from the back, "Everyone. Please. I don't mean to be rude, but please take a (air-finger gesture here) 'chill pill'. You're getting all worked up for nothing. I mean, is this a big deal, or is this a little deal? You decide," she said, using her mantra from school.

I stopped looking at my in-laws' faces and thinking about my friend Jess. Jess would kvell to see this, I thought. Jess would be so proud of her, I'd pause, as Miss M jogged along the lake with her grandparents, chatting. I thought about the fact that I thought about Jess - what she would think. This is the thing: my fellow mommies are consummate cheerleaders. You are trained to see the amazing progress, the subtle changes, recognize the brilliantly regulated choice. This was working. I used your eyes.

I hope you don't mind.

I began to look at things through Gretchen's eyes - how her son is roughly the same age, and how delighted we both are at the change in our children at their new schools; I thought about Michelle and her daughter Riley, who is Miss M's good friend, and I'd imagine Riley pumping her fist for Miss M as she effortlessly made transition after transition. I thought of Kyra and Fluffy, who know something about diplomacy and family gatherings. Of my friend Carrie, who understands quirk and drinks in its sweetness, as I do. Of Niksmom, who tearfully and faithfully cheers every kid in our little village; of Kristen, of Susan, of Osh, of all of you who send Miss M endless electronic applause and spiritual love.

I replaced the screw-tin eyes with yours.

You wouldn't believe the difference.

In me.

I was relaxed. I had a pretty good time (note: a constant flow of Veuve Clicquot helps quite a bit) and was able to get over my stuff so that I could get over their stuff.

Cause really. It's their stuff.

It has nothing to do with Miss M. Or us.

Miss M. is strong. STRONG. Roxie has a tendency to suck the attention out of a room, and that, you can imagine, is a concern of mine. I would nudge Miss M, whispering that perhaps Grandma and Grandpa would like to hear her pretty voice. Miss M rolled her eyes and turned to me. "Mo-ther. Please. That is embarrassing, and I am not a performing monkey."

On the last night, Roxie was well into Sleeping Beauty, draping in a grand reverence, when my father in law boomed, "I want to hear Miss M read."

The show stopped.

Unbelievably, Miss M popped right up and took the new book, a gift from him, and opened it up.

The title? George Washington's Rules of Civility and Decent Behaviour in Company and Conversation.

You know. The kind of book you give most nine-year-olds.

Miss M read the blurbs with humor, perfect pacing, and flawless inflection.

She was laughing.

We were laughing.

She was performing.

It felt, initially, as another one of their ploys to "test" Miss M as they always do (they'll have her spell a word or solve a word problem) but this- this was different. She owned it. She got it.

That's not to say she didn't have a little fun at their expense.

As the in-laws are staunch Republicans, my husband and I avoid talking politics, as we avoid talking about many things with them.

At lunch, Miss M cut her filet mignon, arms akimbo, but nonetheless, hacking away at the tender medallion. Everyone quietly watched her, loathe to offer help. She finally dug out a bit, crossed her long legs, and forked the meat into her mouth. "I'm usually a vegetarian," she blushed, "but I just can't turn down a good cut of meat, you know," she said, for all the world a thirty-year-old woman. Everyone sort of winked in a ha-ha-kids-say-the-darndest-things-sort-of-way.

Then she leaned in.

"So," she said, folding her napkin. "How do you feel about a black president?" A Dem-o-crat?" she said, enjoying herself. She forked another slice of meat into her mouth. She chewed, a huge, shit-eating grin cracked on her face.

It was in that moment that I vowed to never, ever worry about my Miss M again.

Thank you.

Thank you for your eyes.

that's how she do

2009-01-13T21:43:00.000-08:00

Okay.

This might seem trivial to you, so really, I understand if you have better things to do, like, say surf Perez or something like that.

But this rocked my world.

Miss M, as you know, has been at her new school a little over a semester, with marked results.

She's lost 10 pounds of baby fat, which used to pad her tummy and chin due to inertia. She is now a tall and willowy girl, who likes to play at recess with other kids, who rollerblades (!) and ice skates on the weekends.

Yeah. You heard me.

She jokes. All the time. And they're pretty damned good.

Her vocal inflection before, was - well, stilted. Not scripted, not monotone. Just stilted. Still is, a bit. But now, the tweeny inflection will come out, especially when she talks about say, American Girl books like The Care and Keeping of Your Body (I need to talk to you about American Girl books and how great they are for girls who need some help with social skills) or the cute boys in her class, or say, planning her birthday party.

But this.

Now, as you know, I'm a character actress, prone of alot of high-affect - facial expression, expansive gesturing, sonorous voice.

Her sister, who is five, is a mini-stamp of me.

Imagine, if you will, growing up in a household of stereo drama queens, and you, well, you just sort of want to say your piece and be done with it. After all, that's sort of how Daddy rolls. Dinner has been, in the past, a sort of Who's On First between Drama and Roxie, while Miss M and Drama Daddy sort of quietly smile and float through dinner, talking about quantum physics, or say, offshore oil drilling.

So we were readying for bed the other night - preparing bookbags and lunchboxes, laying out uniforms, brushing teeth.
I was in the kitchen, packing Cheez-Its (don't judge me) when Miss M hurriedly ambled in for a glass of water. She got her cup, filled it, took a sip, then turned to go upstairs.

She stubbed her toe on the kitchen island.

Maybe I didn't say that loudly enough for you to hear.

SHE STUBBED HER TOE ON THE KITCHEN ISLAND.

In the past, that was good for maybe an hour of screaming, crying, and histrionics, not to mention a splash of perseveration.

Do you know what she did?

She made a funny face - a mug, if you will - and said, "Oooooh."

Then she shrugged.

And a few steps later stopped.

She thought for a moment.

Then she said,

"Whatevs."

Whatevs.

As if it's been that easy all of her life.

Whatevs.

You know.

'Cause that's how we roll.

maquillage

2009-01-10T09:08:00.000-08:00

Yesterday, it was Friday, and with my new position, I have hired a director to take over the spring musical so that I have time to spend with my kids. It's revolutionary, really, this taking time out for my kids instead of staring down a hundred teenagers every day.

What did I do?

I took Miss M with me to get my eyebrows waxed.

I know, I know, we could have gone to the library, or park, or even for frozen yogurt. It had been 7 weeks since my last visit, and Roxie preferred to stay at home with Grandpa, Miss M was on board...so we went.

We walked into Benefit, where I have had my eyebrows done for ten years or so. If you don't know me well, what you might need to know is that I am a major product whore, that I buy lots of cosmetics and perfume, that I know my stuff, and that a salesperson should really, really be nice to me.

Miss M and I came in, and they were a little busy. M. immediately pulled out a book and ate her muffin. I asked her if she wanted to try some lipgloss, but she rolled her eyes at me and said, rather dryly, "As. If," and proceeded on with her Wind in the Willows, crossing her long legs. A salesgirl, about 20 years old, approached me and asked if I wanted to be "touched up" before my wax. I smiled and said of course, and sat down.

The salesgirl sucked her teeth. "Uh, do you always use this kind of mascara?" she said, as if she were excavating Hitler's tomb. "Yessss," I replied, wondering. I mean, my makeup is always impeccable. Always. I mean, I do industrial stage makeup. Foolproof. "Uh huh," she said, "well, do you love it?" She drew out the "o" in love so that it was an indictment rather than a question. I gulped and started unconciously rubbing my thighs. I felt fat all of a sudden. "It's Dior, I've used it for years - I, uh - what's wrong with it?" She roughly brushed some powder on my cheeks. "I mean, if you like flaking and feathering, it's cool, I guess." I could smell tropical gum on her breath. I sat in silence, trying not to show any facial expression. I looked at M. sitting there in her natural gorgeous state.

I glanced in the mirror. I knew what it was. I'd used a powder shadow as a liner that morning, and it had bled due to my new eye cream.

"Oh! I used a shadow liner this morning and I uh used my Fast Response Eye Cream for the first time and it must have run..." I babbled on as if I were on Meth.

She looked at me warily. Accusingly.

"Uh huh. Maybe you should try a lipgloss - we have some nice light glimmer shades..." her voice trailed off. She showed me a bunch of white-girl colors that frankly, would never do with my complexion. "...maybe your daughter would like this?" she smiled at Miss M, showing her incisors.

Miss M looked up from the book and made a face. My insanely polite daughter grimaced and said, "Uh, NO."

And kept reading.

I was called in for my wax, and as I sat and had my face tugged off, I started to wonder what it was about me that the saleswoman saw. I was in work clothes, so I wasn't a slob. I had my "jewels" on, as Roxie likes to say, and carried the latest and greatest Coach handbag. I'm no slouch.

But I felt like one.

I slunk over to the counter and pulled out my card. The Mean Girl Saleswoman was there.

"I picked out some things that you might like, " she said, showing her incisors again. She must smoke, I thought. Her teeth are yellow. I was pulling at anything to feel better.

I sheepishly nodded and handed her my card.

For some insane reason, I flashed on how I used to feel at Miss M's IEPs, like we were second-class citizens in a school of kids who should be there, versus a kid who was lucky to be getting extra help.

I cleared my throat.

"Uh. Remove that stuff from my bill, please," I said nicely but authoritatively, using my uppity stage voice.

She sort of sighed, handing me my card wordlessly. Miss M followed me out the door, still reading her book.

We walked while I thought.

"That lady. She was kind of - I don't want to swear mom, but she was sort of a B-I-T-C-H" she spelled in a stage whisper.

Sometimes, Miss M astounds me. It appeared that she didn't record the exchange at all, engrossed in her book. She nailed the unfortunate incident on the head.

"Why would she expect you to buy anything with that kind of attitude?" she said, tucking her book under her arm. She continued. "I mean, why would people want to make other people feel like C-R-A-P? " she spelled again.

I kept thinking about the experience of being Miss M's mother. Many, many of our experiences with schools, professionals, clinicians had the same scowling, condescending feel of the 20 year old salesgirl.

I always left those meetings feeling like Miss M was in deep doo-doo; that there was something profundly wrong with my daughter.

Like my errant eyeliner.

I looked at my tall, coltish daughter, so lovely and smart, picking up on exactly the right social nuances she should have in that exchange.

Nothing wrong there.

We strolled into the MAC store, where I am a frequent shopper. This salesgirl greeted me with a hug and called me by name. She showed me the new Hello Kitty line and gave me special pre-order privileges. She complimented Miss M on how lovely she is, and sold me a special sparkly pink gloss for Roxie, whom she remembered from the last time. She asked Miss M about her school uniform and school, and really listened when Miss M took a long time to tell her all about her day.

It's how you deal with people that matters in this world, isn't it? Whether it's business, politics, or education...it's simple human connection and decency.

We walked out, Miss M and I, one hundred dollars lighter.

Now that's what I call customer service.

the storm has passed

2009-01-06T21:50:00.001-08:00

The New Year kicked my ass.

There I was, cooking along, quaffing champagne, ho-ho-ho-ing, being merry and bright...then boom.

It hit me, as it does.

The special needs.

The have nots.

You might know them.

You're toodling along in your life, loving your children, living alongside them...and then you see them from someone else's eyes.

It hits you in a moment of weakness, say - you're a little bit tired, your guard is down - then wham. You start scrutinizing. And seeing things that maybe aren't there that maybe "should" be there; a missed milestone here or there - a slow development, or none at all.

It was innocent enough. We visited some friends who had moved away - good acquaintances, really - who have a son the same age as Miss M, and a daughter who is the same age and best friends with Roxie.

They moved to the 'burbs in a fabulous suburban spread, with good public schools and open spaces for sports.

All the shit that I could care less about.

That's not what did it.

Nope. It was the boy - let's call him Steven - who astonished me. It's been 6 months since we've seen them. He seemed so old, with long hair, and cool clothing and iPods and asking me about Top 40 music. He was interested in YouTube and Soccer and asking me about my high school students. He showed me all of the crap he got for Christmas - fancy remote cars and video games and a cell phone.

I kept looking at this kid and a little voice in the back of my head kept thinking...is this what nine looks like?

It sure as hell isn't what our nine looks like.

Our nine looks like bookreading, and gentle playdates, and, well, still getting a thrill out of a small toy, or even more strange - asking to gather things for the Salvation Army or rooting through cabinets for the local Food Drive.

That Steven and Miss M ignored each other - which is to be expected if you are of the opposite sex and nine years old, I suppose - and Miss M happily entertained the littler girls. She was exceedingly polite, asking everyone about their Christmas, sweetly complimenting the hostess on her festive sweater.

I felt like my heart would break.

The sweetness and innocence - the lack of social slickness or material want or self-actualization - it worries me sometimes. I worry that it will never come, and that Miss M will not be able to swim with the sharks someday. Deep in my heart I know that Miss M has a huge gift for love and empathy - that there is something bigger afoot and that it will manifest in a deeply satisfying way for her some day.

But still.

It didn't help that I was reading the marvelous book Schuyler's Monster by Robert Rummel-Hudson, about a father's fight for his daughter and her daunting medical condition, rendering her unable to speak. It was encouraging and depressing all at the same time, taking us through identification and diagnosis, which, for me, is still very hard to think about. All of that have not, that stuff that you think about your kid NOT doing.

Didn't help.

Then Jett Travolta passed away, and, frankly, I don't know about you, but, well, it made me very uneasy and sad. The loss, of course, is palpable. The media images of a boy who obviously had special needs, and the media speculation about his treatment, the response of his family...it just sickened me. The thought that he may have been denied treatment, or that there was shame involved, or denial...disgusting. And worse - the media exploitation of the boy, his family, and the whispery rumors of his -shudder- possible autism.

So sad. We've so far to go, this country of ours, with our attitudes toward anyone different.

I don't know about you, but too much input short circuits my system. Not unlike my daughter, I can't take too much information at once, otherwise, well, I dysregulate. If I receive too much information about children struggling, parents in pain, discrimination - it simply undoes me. And for my own child? This momentary lapse where it all comes swirling to you - the what have I not seen? What did I miss? feeling about your child. Do you know it? When you start to look hard at people looking hard at your kid? Where every comment seems loaded? Dear reader, do you have these thoughts, these wobbly moments? What do you do? What can you do, other than weather the storm?

It is a nasty, horrible place to be, and I try to visit it not very often.

Poisonous thoughts. So much so, that it made me ill for four days. After this visit, I went home and lay in bed with migraines and vomiting for four days.

I'm no rocket scientist, but I don't think the illness was any coincidence.

I think my body has had enough of the annual pity parties. I think my body knows better - sees with its own eyes and feels with its own heart the magic and almost holy goodness of my otherworldly daughter. Again, it's not less than other kids her age. It's different.

No.

Something else.

Dare I say it?

Better.

Deeper.

Sweeter.

Lovelier.

Special.

And I do

mean

special.

a shot in the dark

2008-12-28T19:17:00.000-08:00

We just came home from the Sing-a-Long Sound of Music at the landmark Castro Theatre, where we booed the Nazis, dressed in costume, ate popcorn until we burst, and generally sang our little hearts out.

There was one minor snafu, when the Captain kissed Maria, and the whole 500+ seat theatre let off New Year's poppers.

As you can imagine, it hurt Miss M's ears.

Miss M. is not fearful of noise as she once was, or excessive light, or flashes. She is pretty well acclimated to this world, and it takes a lot to shake her.

This shook her.

She covered her ears and looked around, more hurt than bewildered or confused.

At dinner tonight:

"I loved the puppet show, and the ball, and the concert at Salzburg. Mom, what I did not like were those poppers - and those boys in front of us with the flashing shoes. Why did they keep stomping them and setting off the poppers?"

I had to keep my composure, because I knew why they keep up their behavior. Their mother, in spite of seeing Miss M cover her ears and whimper, kept giving the boys more poppers, and did not once reprimand them when they were out of hand jumping around, punching each other, flashing their shoes in the darkness - on purpose.

"Well, M, they were badly behaved kids," I began, when Miss M held up her hand.

"Well, it's one thing to be badly behaved and undisciplined," M said sternly, "but I'd classify it as selfish behavior. I mean, did they notice that it hurt other people? I would never want to make anyone uncomfortable, or hurt their feelings, much less their ears," she forked fried rice into her mouth.

Roxie nodded her head, and raised her fist. "You said it, sister," she said, as the remains of her egg roll rolled out of her mouth.

Miss M handed her a napkin. "Uh, Roxie. That might be considered rude and inconsiderate," she said, as she daubed at her sister's chin.

I felt all of the same things at the show - how parents seemed to ignore their children's inconsiderate actions, how certain people felt entitled to walk over other ones, how many blatantly texted on flashing screens, impervious to the people around them. I wondered, in the dark, if I was being extra sensitive because I seem to walk around with protective sensory feelers, even at this stage of Miss M's development.

Miss M. set me straight.

Sometimes, manners and "appropriateness" might be learned behavior.

To those of us who need to study manners, etiquette, and social convention, it might be a little slower in coming. It takes a lot of thought and assimilation. It takes effort.

But at least it's learned.

And enforced.

I'm glad to know, that because my child has had the opportunity to work through some things, she will always, always, look to see who is sitting next to her.

And not pop unless it's okay.

happy christmas

2008-12-25T13:41:00.000-08:00

Dear Friends:

This morning, I listened to my girls wake up and sweetly run in and wish me and my husband a very Merry Christmas in their high, tinkly voices. They then waited for each other to take pees, put on slippers, and descend down the staircase, hand in hand.

Miss M was unfailingly patient and helpful to her little sister, who seemed to open an endless supply of pink items, teddy bears, and craft kits.

M received a sewing machine and fabric, the better to make quilts for the homeless.

Her request.

Many years ago, we received the devastating news of her autism, and my husband and I spent Christmas day, wandering aimlessly around Golden Gate park, sobbing audibly, while she echoed and ran in circles.

As I look at my comely, tall, and kind 'tween, I have but one thought:

How things change.

For you and yours, I submit my favorite version of Ave Maria, sung by young voices. (Ignore the video; the song is transcendent)

Ave Maria - Blessed be Mary, one of the first special needs mothers in history, who did her job to see her son through.

Merry Christmas.

among many other reasons

2008-12-22T06:20:00.000-08:00

Roxie has this new thing.

She wants to be just like me.

I think it's the magic age - five - or perhaps it's the headiness of Kindergarten, but man oh man, I walk on water to this kid.

I'll be at my desk when I'll hear a rooting around in my purse. She'll be around the corner, perched on the sofa, legs crossed, her tiny hands holding my Blackberry to her ear. "Gurrrrl, I see crazy coming and I cross-the-street!" she'll say, a perfect impression of my tone and cadence. She examines her nails, as I do, and runs her fingers along her legs - a deceptively glamorous move - (though I usually do it to check stubble growth).

She wants to wear my perfume, knots a scarf on herself when I do, and asks me what my favorite song is. I'll tell her, and no matter what the song is, she'll exclaim in surprise, "Me too!".

Me too.

I know that this is developmental and a passing phase; soon I'll be at the bottom of the toy box like last year's Barbie.

It has me thinking, though.

Kids notice.

Kids listen.

Not to stress anyone out any more than they already are, but they are watching us.

I have been volunteering at M's school for the last month; I helped costume the elaborate all-school musical, and I got to know most of the kids in the show.

Parents, too.

As M goes to a very small private school designed for the child who needs a more intimate setting (sensory issues, learning issues, light behavior problems), you can imagine that these parents are of a different ilk.

What I've noticed that sometimes apples don't fall far from trees, and that social difficulty may be generational. (Am I putting this tactfully enough?) I would sit, prepping costumes with these parents, and wonder and worry for these children as I watched their parents awkwardly navigate through a meeting. How do they model? Where do they get guidance?

Call it volunteer burn-out, but I started becoming jaded.

The day of the big show arrived, and I stationed myself on the third floor, makeup kit in hand, where a small group of volunteers met me to help prepare the actors for their show. I hadn't met this particular group before, and found them sweet and helpful. We positioned high stools around the room, and invited the stream of children in, one at at time. I distributed brushes, and set to work. I can knock out a face in three minutes tops, and I barely glanced up when one mother tapped me on the shoulder. "Drama," she whispered,"what do we do with them?". I looked at the other mothers. They stood frozen, sponges and brushes in their hands, looking curiously at me, their charges squirming in their seats. I called a quick re-group and told them that all they needed to do was get a little color on their faces, cover pimples, and most of all, make them feel like a million.

A freckly overweight boy with a ruddiness problem sat at my station. "Okay. Tell me about your character," I said, mixing some foundation on the back of my hand. "Uh, I'm the writer," he said, looking uncomfortable. "Yes, I know that you're the writer. Everyone knows that you're the writer, of course," I said, as if he were playing Otello at the Met, "but what about your character? What is he about? How old is he? What is he feeling?"

The other mothers smiled slightly as they brushed makeup on, listening to my patter.

Unbelievably, the boy answered. "Uh, well. He likes Rapunzel. He listens to rap music, and oh, he's about, uh, thirty."

"Ah," I said, as if he were Brando talking about his method, "Sooo interesting. Rap music? Perfect!" I exclaimed, and gave him the same standard powder-blush-eye pencil that every kid would get in under three minutes.

He emerged beaming.

Soon I began to hear the other mothers follow suit, asking questions about character, complimenting hair, engaging the kids in talk about themselves. Afterward, as we were cleaning up, one mother said, "That was the most fun I've had in a year," and we all nodded, wiping counters, rife with pride.

The show was perfection, each child showcased and confident, rehearsed within an inch of their lives. I watched, as I do, the parents watching their children, and felt the swell of pride for each and every one of them as well.

Afterward, parents and grandparents and friends went out of their way to acknowledge and compliment all of the children, not just their own. Mothers came up to other mothers and said under lowered voices, "Did you see your son? He's doing so well! And he has so many friends now!". In another setting, this might be construed as condescending behavior, but as you know, it is balm for a weary mother's ears.

As you know, we run with a tight posse. We are a formidable mafia of support.

M did brilliantly and hammily, blowing kisses to the audience, holding her final pose with a wide smile. She insisted that we go out to celebrate, and off to the local burger joint we went. Another student, an eighth grader, was there, and approached me with a lone flower, obviously plucked from her bouquet. "Thank you," she said, faint traces of her speech impediment still there, "for doing our makeup and asking about us." I gave her a quick hug, and turned my face so that she wouldn't see my tears.

I thought about my rag-tag-ad-hoc group of mother make up artists, and how good we felt giving to the kids a bit of powder and encouragement.

It matters. Kids listen.

They answer when they are asked.

Sometimes, we don't feel good enough. Speaking from my working-mother standpoint, I am the first to stand up at this meeting and say that I am guilty most of the time; that I overcompensate with fireworks out of my ass on the weekends; that I lose my patience more than I care to admit.

My friend Justine works with me, and our girls attend the same Kindergarten. We take turns picking up and doing after-school things, and sometimes it is a mad rush between us to juggle our jobs and girls. We do a fine job, but the stress of children and work is, as you can guess, palpable.

On the last day of school before break, Justine came down to my office crying. I asked her what had happened, and she marched to my computer and opened up her email.

It was to our supervisor, and it read:

I am going to leave early and take my daughter to the Nutcracker today. I am possibly more excited than she is! I will take care of the observations tonight when I get home.

To which our anal retentive supervisor wrote:

Which is why you are such a good mother, among many other reasons.

This should be mandated by the government, a weekly declaration to mothers.

We need to hear this.

This is why you are such a good mother, among many other reasons:

You might buy store-bought cupcakes and leave them off in the school office just a little too late for the class party;

You hold your breath, smile frozen, in restaurants as your socially-challenged kid struggles to make small talk with the server;

You are the second-to-the-last-person to pick up at aftercare on Fridays;

You can't always drive on the fieldtrips, but send in extra items on the class wish list;

Like me, you crisply turn your child over to Dad when it's time to start the math homework;

You have that second glass of wine after the kids go to bed;

You look at the clock precisely at recess time and wonder;

You go just a little overboard with enthusiasm over playdates;

You think about your child a little more than you need to as you try to drift off to sleep at night;

For all of these reasons - that's what makes you a good mother. Mothers don't have to be perfect models, they don't have to be facile at social skills, or math, or sports.

They have to ask the questions.

And listen.

my tot

2008-12-10T05:33:00.000-08:00

I was on the phone with my sister-in-law the other day, the one who was born wealthy and married wealthy, who has never worked, the one who was talking to me on the phone as she directed her cleaning lady to "get into those corners over there."

That one.

She told me how busy she's been with Christmas shopping for her kids; how her 9 year old wants an iPhone, and how many Wii games she had to track down. There were iPods to be purchased, and special skateboards and shoes.

Then she got around to business. "What would the girls like for Christmas?"

I hedged. I thought. I told her I'd get back to her.

I asked Roxie, who had a short but respectable gift for a 5 year old. "I want a Barbie Styling Head, Bendaroos, and a goldfish," she said crisply, turning back to her coloring.

I cleared my throat, because I knew the tough question was coming. Miss M sat on the sofa, reading and twirling her hair. "Honey. Auntie C would like to know what you'd like for Christmas."

"Well. I don't want to seem greedy. I've asked Santa for a Friendship Bracelet kit. Mom. What I really want is that I'd like to bring in a gift to the Toys for Tots bin at school every day until Christmas."

She smiled sweetly and kept reading.

"M," I demurred, "that is wonderful, and you are so generous. Do you think you might be disappointed on Christmas morning?" I started to flick through my files for a big ticket item that I could surprise her with. Something. Something to tell my sister-in-law, who was, undoubtedly at that moment, telling her gardener how to assemble her tree.

She peeled her eyes away from her book. She thought.

"No," she said, and turned the page.

Let me assure you, if you might not have surmised: I am a Fezziwig.

Egg Nog pumps through my veins. I love Christmas, always have, from the time I started my ornament collection at ten. I bake and give, sing, and most importantly, give the girls the experiences that are indelibly Big City Christmas - ballets and plays and downtown events and parties, all in lovely velvets and headbands and little purses with Kleenex and Andes mints for intermissions. There are guests and parties through our house, and Grimpy stays for the month, assisting with homework and chores and art projects.

Our month is busy and very special.

I was on the phone with my friend Justine the other evening. "They don't want anything!" I whispered harshly into the phone, "their cousins all want Wiis and ponies and technology! My kid wants freakin' Toys for Tots!"

Justine laughed. "And your problem is -"

I stopped.

Justine kept on. " I have no worries about M being disappointed on Christmas morning if she has a few books and a Jamba Juice card. I think she's operating on a level that we just aren't mature enough to understand."

It's true. We are usually dressed up, seeing plays downtown, and Miss M shyly asks for quarters and dollars to give to the homeless. She's done that since she was three.

Miss M never asks for much; I used to think that it was for lack of interest or understanding what typical children want.

Now I understand that it isn't the autism at all.

It's her big heart.

You know. The one that they once told me couldn't recognize the feelings of others.

Yes, that big, sweet, funny heart that this mother is so proud of.

So.

There is a big Target bag in M's room filled with $5 Barbies and puzzles and Legos, and each morning, she dips in and takes a modest toy to school, proudly wearing her Toys for Tots pin on her backpack. In the car on their way to school, her father reports, she asks him where he supposes the toy goes, and who it is going to, and what his or her life must be like. "Do you think they get to go to The Nutcracker too, Daddy? Do you think I'd know them if I saw them? Do you think they'll wonder who the gift is from - or if they will think it's Santa?"

No. I don't think Miss M will be disappointed in her few books and small gifts Christmas morning.

I think she's got this thing covered.

behold!

2008-12-09T06:46:00.000-08:00

You know, I remember the days when there were tears, sweat and screaming during the annual Xmas photo session.

And that was just me.

But look.

Aren't they divine?

I'm so lucky.

thanks. and belief.

2008-11-27T07:39:00.000-08:00

There is a great moment in Hello Dolly when Dolly Levi descends the staircase at the Harmonia Gardens after a long mourning period for her deceased husband. She wears a beautiful ruby-red dress (well, in the play. Ms. Streisand wears gold because, she is well, Ms. Streisand) She quaffs champagne, flirts with the wait staff, dances in a fishtail dress and declares, "Well, well, well, fellas...look who's back, fellas...."

It's a moment that has been burned into my consciousness since I was a wee girl, one that I play on the DVR in my head over and over again.

And that's how I feel today.

Done with 100-hour work weeks, with slapping my arms at stoplights to stay awake, of pee that smells like espresso roast. I write to you today a free woman.

How was the show, you ask?

Yes we did.

The show was far beyond my expectations - brilliant and ambitious, with multi media, opera supertitles, 24 beautifully transitioned scene changes - a brilliant score of John Adams and Kronos Quartet, Philip Glass, the Sex Pistols, and the Clash.

And my students.

I would sit, watching the show, and marvel at how, after months of cajoling performances, my students actually drank up every note, every direction, every nuance I gave them. They were just being choosy about when to finally use it.

We were lauded of course, by the administration, who were stunned by the effort, the quality, and even attracted professional artists in the area. We were gifted with donations. We accomplished all that we aimed for and more.

But that's not what struck me.

I watched this assorted group of students - most of whom have social difficulty, or auditory processing, most of them with organizational issues - and saw them own fleeting stardom and garner adoration from the rest of the school population.

Ted was the lead of the show. Ted is brilliant. He gets terrible grades. He was thrown out of 5 elementary schools and teased mercilessly. He is tall, a little chubby, with rampant acne. Sometimes he doesn't bathe as well as he should. He uses vocabulary like pernicious and truculent in everyday parlance. He is warm and friendly to everyone, and careful to include and incorporate every soul on the stage.

His talent is prodigious; he is going places, this kid, if we can get him to remember where his homework is and tie his shoes.

Ted played the huge, showy role, and the other huge role, that of an evil beadle who was the master of malaprops. He would exit as one, and 10 seconds later, emerge as the other - dialect change, posture adjusted, a flawless performance.

I would sit with his mother every night, both of us daubing at our eyes, squeezing each other's hands, wordless but understanding. After the lights went up, she'd shrug, unable to speak and say, "Well, Drama...you know," and her voice would catch and she'd excuse herself.

Ted has a girlfriend. She is the prettiest girl, the sweetest and most together student I have. It seems that teenaged girls do have taste after all. Ted works a part-time job. He works so that he can treat his girl to real dates- nice candlelit dinners and concerts and plays.

In my darkest hour, I have students like Ted who sustain me with their hugs and jokes.

On closing night, relief washed over me like a monsoon. I sat, as I do, with Ted's mother. I am used to him; he's like my own son. We watched his closing monologue when it was clear that he was tired. His funny walk surfaced, and as he was speaking, his hands flapped a bit.

You understand what I mean.

His mother and I glanced at each other and watched.

At the reception afterward, a local well-known playwright was babbling furiously to me about the performance. "I want to send my daughter here. I want her to have this experience. And that kid - I mean, that physicality stuff at the end - when he's about to go to the gallows? That foot thing? The hands? I mean, genius detail, Drama."

Perhaps that what autism is. Genius detail. A different perspective.

Ted found me and clumsily enveloped me in his 6'1, 220 pound body, smelling of sweat and loaded with fake blood. His hands were tremoring and doing that thing that they do when he's tired.

Gifts surface in the strangest places. For those of you wondering, my girls were hauled to endless rehearsals, ate dinner with the group every night for 3 weeks, and begged to see each show. Miss M would sob at certain parts, clutching her heart, saying that "It's all too much," - the hanging and murder and abuse of a small boy. Roxie would tell me that parts were "good, but spotty - tell them to pick up their cues," and continue munching her small bag of popcorn. In the car on the way to dress rehearsal, M plopped in, her uniform and backpack flying. We sat in silence as I busily navigated our way back to the theatre.
Her throat cleared. "Mom," she said slowly, " I don't mean to offend you, but I cannot be silent any more. I think that you did a wonderful job with the show, but conceptually, I have to disagree with some of your choices."

In my worry and neurosis - will my children hate me for this? - it seems that there is a different kind of family experience at work here. Maybe my girls had to do homework at a desk in a dressing room, with actors in full make up helping with Math. Maybe they ate food from Craft Services for three weeks straight. Maybe they only got a mother who sat in the audience with her laptop, barking cues, who occasionally would give them a hug or stroke of the hair.

But my children have ideas. And perspective. They know that everyone has a shot, even a boy with acne, who walks funny and twists his hands when he's tired. Different is just that.

Different.

But valuable. And sometimes brilliant.

The principal asked me what the secret of my success was. I looked at the assorted group, my own children intermixed among the actors. "They do more because I ask them to," I looked him in the eye, "and I believe that they will do it." I sighed and sipped my coffee and walked back to my people, because really, that's who I'd rather be with.

There are gifts everywhere.

The important part is asking and believing.

Happy Thanksgiving, my friends.

on patience, obama, and madonna

2008-11-07T21:15:00.000-08:00

In Madonna's parking lot - a very middle-aged Lolita and her swain.

My first winter in Cambridge was in 1996, one of the coldest snowy winters in recent history. A California girl, I had never seen snow, and showed up at the airport in a short shearling jacket and high-heeled flamenco boots. When they said to dress for snow, I wasn't quite clear on the concept. The aide sent to pick me up incredulously shook his head at me as we left Logan Airport, back in the days where your party could actually meet you at a gate.

I was happy and miserable - rehearsing long hours (my favorite thing) on a show that I was less than enthusiastic about (French, Classical, blah) in the middle of some very unfamiliar and uncomfortable terrain.

On my way to the performance each night, I silently begged to fall and break a leg so that I wouldn't have to go on, hydroplaning on the ice in my four inch heels (I eventually broke down and bought snow boots, but it took six weeks). I distinctly remember the snow pelting my face like tiny needles, blinding me on my way across the short walk through Harvard Square.

Just get through the next five minutes, I'd tell myself.

I don't like to be wet. I don't like to be uncomfortable. I don't like to wait in lines. I don't like being told what to do.

While the other actors amiably removed their wet items slowly and painstaking hung their gear, I leapt out of mine, noisily shaking my coat and slapping the snow off my bag.

Like I said, I don't like to be uncomfortable. The snow. The weather. It offended me. How dare it put me out?

The last six weeks or so has been poisonous. Really. I'm not going to boo-hoo about it, or tell you how disgustingly overworked and under-appreciated or unsupported I am; I know you believe me when I tell you that I am at the end of the road on this one. We've established this, you and I. It's an endgame, with me having to wait this last labor pain and deliver the goods.

I'll give you the highlights: I have to produce something brilliant to prove our worth, to get the development money to build the building, to prove myself in my chairmanship, to be a good mother, an active volunteer, and last, a good spouse.

The kids and the spouse don't really notice either way, and sometimes that's a good thing, and others, it's lonely and isolating.

What I need to do is finish the last hurdle. As you know, when you are under pressure, you focus. You narrow the field. Conserve the energy.

And that's what has been happening.

To my concerned friends - no, I do not have a terminal illness, I have not collapsed under financial strain, and yes, the girls are wonderful. The husband, well, it remains status quo.

What has changed is my expectation of myself and others. In order to produce on demand (Go on! Dance for Grandma! my work seems to say to me) I must delegate, be patient with myself, with my students, and remain calm in the eye of the storm.

As my daughters remind me with a line co-opted from Kung Fu Panda: There is no secret ingredient.

I'm just making it up as I go along.

It is weird and raw, not having this autism thing to rail about. Oh, it's here, always will be. But it's softer, less present, and frankly, not something we think about much anymore. M. is more A.D.D. than P.D.D. and what that means now, friends...is that we speak Portuguese around here and less French. Don't get me wrong. We'll always be French. It's like Fight Club. You don't get out. You just need to go to the meetings less and less. And learn some rudimentary Portuguese.

But I digress.

I am soldiering on, snow slapping my face...miserable, yes, but with an intent, a purpose...

I will finish this motherf*cker of a production in three short weeks...and I am free. I have hired staff to take care of our next behemoth so all that I will do is sit back in my desk chair and file my nails and have my handsome man-servant refill my coffee mug. Yes, all of the staff I have hired are young, handsome men. What? Don't judge me.

The truth of it, people, is that sometimes life bites you in the ass, and it does it hard. It draws blood. But we get through - and the way that we get through gracefully, and with style is having a purpose. And a plan.

And, you know, I do. Have one. A plan.

Some things have happened this week have helped the medicine go down.

You may have heard that we have a new president.

You might guess that I, as well as the rest of the country, am breathing a sigh of relief, am saying prayers of hope and gratitude, and as am struck by Whoopi Goldberg's observation: "This generation, the one that hasn't shown up - they might stand up and pick up their pants because someone asked them to. I think, with Obama in the house, that they just might do it."

I'm paraphrasing slightly, of course, because I watched it in an exhausted stupor the other night, but you get my drift.

As a short woman of color, who has seen more adversity and subtle discrimination than I care to admit...I feel strong. I feel like someone speaks for me. I feel like, when he uttered the words gay and disabled, that we, my friends, would be seen.

As we all hooted and cheered and tweeted and texted and hugged and cried, I felt, as you might have, that we are of the same fabric sweeping over this ravaged land, threading together and hanging on tight, colors and textures filling the holes and the gaps shot through with so much despair.

On a strangely similar note, I had this feeling once more this week. My Gay and I attended the Madonna concert. It was a long, exhausting Saturday after a long, exhausting week, and I was too tired to go. Ten minutes before My Gay came bounding jauntily up the stairs, I pulled on a catsuit and thigh-high boots and applied my drag. We drove there, in My Gay's fancy car, singing and listening in the rain, pensive and sweet, but not overly excited.

Once there, the arena was pulsing with life. Madonna, bless her gaunt heart, was in rare form, double-dutching and kissing the dancers, playing all of her new tunes intermixed with her old standards.

I knew every word.

So did thousands of other people.

We sang together - a sea of middle aged women and gay men - and for 2 1/2 hours, we, too, wove a different kind of fabric - a flashier one, perhaps one that was more synthetic - but a fabric nonetheless of pure joy and life.

Afterward, My Gay and I danced in the parking lot, singing and talking to other audience members. In the rain, we leapt about, living somewhere in 1988, and exhausted our poor forty-something bodies. We had a late/early morning Grand Slam at Denny's (um, hello college?) and looked around at all of the other audience members sagging slightly at the late hour.

"We're here," My Gay said, and clasped my hand in his - the very hand that was paralyzed and has its own tale of adversity to tell.

We ate quietly, bursting into bubbles of laughter now and again, chewing our toast and drinking weak diner coffee in cracked mugs.

Indeed.

We're still here.

2008-11-04T05:52:00.000-08:00

i'm still here

2008-10-29T21:35:00.001-07:00

Hello Friends.

I haven't forgotten you.

I carry you all with me, right here, in my pocket.

I am beyond overwhelmed with work, children, and some life stuff.

I should be back up posting again, soon.

Keep me in your prayers, will you?

I could use a few right now.

Thanks.

on football and freedom

2008-10-12T08:02:00.000-07:00

Hi.

I'm still here.

Sorry for the brief respite.

You might say I've been busy.

So it's showtime around these parts, and if you've been following along, that means endless rehearsals for me, non-stop running around at work, tapping on my laptop in bed, and calls to parents re: the anorexic girl who needs to be fed during rehearsal; the kid with the lead who fell off his bike and broke his arm; the girl with the bi-polar mother who is having a tough, tough go of it and needs me to drive her home, across the city, after every rehearsal.

For fun, throw in two school-aged girls who are deeply enmeshed in their school lives, their homework, their letters and getting that reading thing down, and for Miss M, navigating the social mysteries of fourth grade.

I look at my co-workers sitting down and eating lunch, having conversations, and I ask myself who are these people?

As usual, the universe stepped in. Couldn't keep her sticky little fingers off the controls. Thank God.

As I was whirling around this maelstrom, wondering how/when/if I'd ever find the time for my kids and myself, a fabulously offensive miracle dropped into my lap.

I was called into the principal's office and told that one of our performances was going to be cancelled.

For a football game.

Yes, my hours of work, my students slavishly memorizing difficult text, the legions of kids constructing sets...were to be cancelled, for a football game "was really a community event."

Uh. Hello?

How about the 100 plus students and their friends and families who make up the arts community?

I won't go into more detail than to say it wasn't the actual cancellation but the gesture and significance of the act. The day they lowered the boom on me, I worked sixteen hours that day; teaching, then rehearsing, then serving dinner to the students and then taking them to a performance at the local professional theatre.

My little world doesn't matter so much to the rest of the world.

All of my work, my striving for excellence and amazingness? It doesn't matter all that much.

My children are sacrificing their time with me...for this? For football mentality? (My apologies if you are a football fan; I mean no disrespect)

For a few days, I kept to myself in my office, having a quiet pity party, wondering why I bother.

Then it struck me. Flip this around, Batman. No, they really don't know amazing from mediocre from a hole in the ground.

Good is good enough.

I don't have to bust my ass.

Now wait. Before you get excited. I don't mean that I won't be amazing. I just have to be half as amazing.

I've utilized my new, young, childless assistant, to his great pleasure, as my co-director. I've given him the next show all to himself.

I leave work before it's dark, and pick up my girls right around snack time at aftercare. We go to the park, do homework, hang out. Laugh. Sometimes, I grumble as I put away the dishes or bitch at them to pick up their socks and discarded uniform pieces all over the family room.

A few days a week, I work the show, and on others, my assistant deals.

And I don't check my Blackberry.

Come Thanksgiving, I work a regular job just like everyone else. No more job plus the full-time afternoon job.

Just a job.

Not my life.

My girls, of course, are delighted. We decorated for Halloween, and feeling inspired, decided to have a party with our friends at our new school. It got so heated, that I had to put my foot down and make it a smaller number, so that we could do quality games and crafts (and have some manageability for our friends with special needs).

I've thought for a long time about how to make this "break" at work, to wean everyone of me, my program, and my pluck that both defines and imprisons me at times. As Jess Wilson suggested, "Now is the time to put it into action."

And when Jess Wilson talks, I listen.

Thank God for the football game, clueless administrations, and less-than-Arts-loving communities.

You've just given me some freedom.

Yesterday, Roxie and her friend had a play date, feverishly lettering, drawing and snipping, because, apparently, in Kindergarten, that's all you do if you are "cool" - so Miss M and I went shopping to purchase some birthday presents for her friends. Stepping back, I hadn't noticed that she was one inch away from being my height, and that her legs go up to her neck, and that her blonde-streaked brown hair was so attractive. She wore yoga pants, a fitted tie-dye t-shirt, glitter flip-flops. As I was standing in the queue for coffee (yes, the famous 5-shot Americano) I squinted my eyes and looked at her. She looked like a teen knock out.

I noticed some 13 year old boys checking her out.

It frightened me, amazed me, and frankly, stunned me.

When did she get so old?

Later, in a hip thrift store, my girl who never notices fashion or trends approached me. She held up a pink sweater with several different sparkly threads, beautiful but atypical in its femininity. She also held up a hot pinky orange vintage angora cardigan. It obviously appealed to her senses, but also, in her words, "was so undefined in color, and much more interesting than that mall crap."

Ah. I see where this is going.

So there you have it. I've reconnected with my daughters - not a moment too late - and am able to witness my stunning daughter emerge into adolescence. I am able to make all of our volunteer hours, meet other parents, drive on (some) field trips, and even, have a very small Halloween party.

Oh. Yes. And I'll be performing come December. It's all set up.

My audience awaits.

More to come.

So much more.

this mom's birthday

2008-10-07T17:41:00.000-07:00

A little over two years ago, I found myself very isolated and lonely, sorely in need of some fellow mommy company.

I stumbled upon Kyra of This Mom, who immediately enraptured me with her witty musings, her sumptuous and creative crafts, life with the irrepressible Fluffy, and her devotion to politics.

Kyra is a gal who lays it all out there and tells it like it is.

I haven't been lonely since.

Join me in wishing her a happy birthday, will you? Go on. Pop on over. Oh, and if you've never read Kyra?

You're in for a genuine treat.

Happy Birthday, my gorgeous, sexy, hilarious, smart, witty and vibrant friend!

i'm changing my vote

2008-10-02T19:31:00.000-07:00

my little friends

2008-09-27T21:16:00.000-07:00

So here I am, snuggled in a big old honking king-sized bed soft and downy as a nun's virtue, musing over the last few days spent here in beautiful Chicago.

My Gay and I have been attending a theatre conference, days filled with lectures and corporate ballrooms, watered down urn-Starbuck's, and by night, theatre and our standby, ever-faithful Grey Goose, dirty.

A few modest observations, dear reader, as I am still and solitary enough to formulate thoughts.

I miss my kids. I miss them needing me. Wanting me to look at their newest trick (Roxie), latest elaborate story (Miss M) or constant bids for snuggling (both, bless them)

It's very nice to be taken care of; to have someone make your bed, reserve your tickets, bring you hot tea at night (yes, the hotel is excellent), and to have no other responsibility but to work and listen.

I listened a lot. I listened to lectures about classroom management and assessment, how to use improvisation in the classroom, how to engage students. I learned how the brain functions on drama; how the act of doing and feeling and moving creates indelible responses in the students that will impress them for the rest of their lives.

The lecturer told us how elastic the brain is; how successive experiences shape and change the synapses and neurons, and that the brain is far more expansive than any of us really know. The lecturer paused dramatically and put her hands on her hips and then leaned into the mic. "Then how come some students just never get it?" she asked in her southern twang, as the room exploded into polite conventioneer laughter.

I didn't really laugh - first of all, because her delivery wasn't very good, but also because I was a little taken aback by her comment. After all, she'd spent the last 47 minutes discussing how the brain is an "elastic muscle" that we are able to draw emotional sense memories from; that it went far beyond reasoning and traditional intellect. My feeling is that students get as much as they can process at a time, and that eventually they will come to where they are comfortable. Not everyone has to act the same or have the same emotional reserves, for Gods' sake. Theatre would be very dull if it were that simple. Life would be very dull if we had the same emotional capacity. In fact, it would all cancel out, and emotions wouldn't be emotions at all, but some routinely accepted appropriate response.

If there's one thing I can't stand as an actor, it's an appropriate or anticipated response.

I started drifting during the lecture, thinking about all of the ways that we use theatre as a learning device, as a selling tool, even as a political venue. (Think of the theatricality of Friday's debate!) For many, (not all), the visual and aural stimulus of heavy affect stimulates learning and teaches emotional response. I think often of my little friends with echolalia, and how often they will mimic sounds and expression as a way to soothe themselves, but also as a learning tool.

Pretty brilliant, don't you think?

I began thinking about my same little friends who might be starting school just about now, and their parents, who, based on my conversations with them, are pretty anxious about this very significant transition.

I have many of these little friends. Some are having it rough. Some are stressed out by the sounds and size and smells, not to mention adjusting to a new face blathering a bunch of new "rules" to their tender and maybe- just- a- little -bit rigid- ears. Some have fared beautifully, enjoying the structure of the day and the clear expectations presented.

All seem to dislike recess.

I listen to their parents, breathlessly reporting on their days, worrying about a bad day, wondering if it ever will get better - or boasting that their child is really doing it, and doing it well.

I understand all of those feelings, and if you know me or my 180 posts, you'll know that I can do the same; swing from exultant to depressed within a matter of days. I can tell you that Miss M is the most miraculous kid in the world, or wonder if she will ever work through her challenges.

Of course we do it. We're parents. We signed on the dotted line.

I will tell you this, as a parent of a 4th grader, a few short years past the kinder age of parent shock and worry, and dawning the crest of oh-my-God-Junior-High.

It gets better.

And it gets worse.

And better again.

And so on.

There are days where your child will scream and hit the ground because the bells were too loud, and then there are the happy emails home where your child's teacher will tell you that she played with someone, or sang with the class, or played kickball in PE.

Enjoy the happy days. Get through the hard days. Try not to get too attached to either. But take this little tip from old Drama:

That brain is working, taking it all in - growing and stretching and recording and trying to figure this very, very complex planet out. I pray you - try not to be like the peroxided lecturer who complained that kids "didn't get emotions", but try to remember that everyone has their own process and own time.

And capacity.

And comfort zone.

I'll try to remind myself, too.

And for those of you who are shaking your fist at the sky, wondering if you will ever wake up or go to sleep without the thought of your child's challenges hanging over your pillow, pervading your day -

I just went five days without a thought about my daughter's autism.

Five days without releasing my cortisol on autism.

I just thought about her and how much I missed her.

The day I thought would never come has come...and it feels...it feels...

...pretty much like every other day.

But lighter.

Much lighter.

I'm still worried about her math, though.

jenny listens to us

2008-09-23T17:10:00.000-07:00

Jenny McCarthy, advocate and mother of Evan, 6, who has autism, will be hosting a live chat on Oprah.com Wednesday, September 24 at 7pm CT. Jenny wants to hear from you, mothers everywhere, and is asking for your questions and comments. Click here to participate!

Finally...the Oracle of the Big O. Not a moment too soon!

*photo courtesy of People magazine.

thar be strong words ahead, matey

2008-09-20T21:42:00.000-07:00

"Drama? Is that you?"

I looked up from my In Style magazine, fifth person in a very, very long line in a very, very crowded Safeway. It was late Friday afternoon and my dogs were barking in my 4 inch heels. A kind-looking middle-aged man stood before me, pushing his basket of crackers and milk, child in one of those fabric germ-protector contraptions.

"State college? Imaginary Invalid, 1987?"

My brain went into overdrive as I scanned my files.

Oh shit.

Please say that I didn't sleep with him.

"Vince? Vince Pezzi?"

Thank God. No coitus. No fooling around. He was Fop #3 in a college theatre production. Got it.

"Vince! How are you?" The girls looked up from their Good Housekeeping, deep in discussion about Halloween cupcakes.

Vince proceeded to tell me about his Silicon Valley job, his new home, his boy, Ben, two, who sat placidly in the basket, munching a cheesestick.

The line wasn't moving. I was going to be making small talk for awhile, I supposed.

Vince was sweet, and just as I was starting to recall, a little dull. Then he caught my interest.

He started talking about me.

Gets you every time.

"Drama, you were always the craziest. Do you remember how you used to drink Tequila shots and hold the glass between your teeth? And then wrestle guys - you got John in that headlock with your legs and he had to wear a neck donut during Man of La Mancha performances?

I glanced at the girls, innocent and adorable in their uniforms and headbands. I told them to beat it and get cookie samples from the bakery. Miss M rolled her eyes, put the magazine down, took Roxie's hand, and disappeared down the aisle.

Vince was enjoying himself.

"Drama, did you pursue acting? Did you? You were always so damned fearless!" he said as he inched in closer to me. "You're so tiny," he said, "you seemed so much bigger back then."

And I was wearing four inch heels.

Maybe I was "bigger" back then? Was I spiritually shrinking?

I explained that I did pursue theatre, that I had a healthy career, and presently teach.

He made a whooshing sound with his mouth. "They let you teach?" he guffawed a bit. "Bet they don't know what they're in for."

What?

He made me sound like a pirate. An outlaw. Someone dangerous.

I started formulating a mental picture of who this guy was. Oh yes. He used to babble about Star Trek all the time, and as I recall, told me once that he was on a clogging team. I pondered briefly if his son was on the Spectrum.

The line started to move. I pushed my cart up, and he pulled up behind me.

"Remember Professor Mahler? How she used to rip us up after scenework? You used to say something I'll never forget."

He scrunched himself up little, like a little troll. I assumed that he was imitating me. "You used to say, 'suck my ass.' Just like that. During breaks, you'd smoke those little french cigarettes and talk about Professor Mahler and say that." He laughed again.

Silence.

"Suck my ass," he repeated, as if I hadn't heard it the first time.

It was fascinating, I'll admit, getting this stranger's perspective on my younger self. I do remember the "suck my ass thing."
In theatre school, a typical class would involved pouring your guts out into a scene, and then - ulp - asking for feedback from your peers and teacher. On your performance. Interpretation. Persona.

My palms sweat thinking about it. Yes, this particular professor was mean. She was a hardass who had an axe to grind. She liked it when she would make us cry. One time, she told me that I shouldn't audition for a particular part because I wasn't "physically suited to the ingenue genre."

This was the first suck my ass that I can remember. I remember saying it in the hallway before the audition that I wasn't right for, saying it loudly and defiantly, waving the script around, making sure everyone could hear me.

Then I got the part.

Suck my ass followed me for many years, my mantra of choice, as I was scrutinized, judged, fed-back, poked, measured, fitted, and asked to morph into someone's vision of something. Suck my ass followed me to auditions and after break-ups. Suck my ass got me through the world's most competitive Ivy-League grad school.

I miss her sometimes, this suck-my-ass pirate character that Vince was so enamored of. Obviously, she affected his life in some small way.

It's the utter confidence, the ballsiness of a twenty-year-old kid, blithely mouthing off for the sake of mouthing off, of course, but on some existential level, it's a pretty great quality to have.

I could have used her all those times I got those tight-assed looks at school functions, on the park, or in an IEP meeting.

The suck-my-ass pirate.

Thanks, Vince. Thanks for remembering her to me.

I will definitely give her a call some time.

just for sh*ts and giggles...

2008-09-17T12:01:00.001-07:00

Truck, Trig, Trapper, Jeep, Wicker, Pledge, Bristol, Allegiance, Skiddoo...

http://politsk.blogspot.com/2008/09/sarah_13.html

I'm Gripper Carom Palin.

You?

Oh, and you wanna read something brilliant? My hero, Anne Lamott, waxes philosophic on -er - Claw Washout. Just brilliant. And true.

what gives, part deux

2008-09-15T13:40:00.000-07:00

So I made a big old proclamation last post, dramatically saying that I was stepping down.

I am.

I mean, I'm trying.

My boss, who is also one of my best friends, listened intently as I explained it all, nodded, and said, "But you will still direct the shows."

I said, "I will oversee that the quality remains assured."

Then she said, "Which means that you will still direct the shows."

I explained that my job has always been outlined as a program director, a Chair - making sure that our productions are quality - but I am not required to direct.

"But we're getting a new Arts Facility," she said.

"And I'm sure you'd like to have me remain here to see it," I countered.

So it's a gradual process, this weaning the entire community of my withered teat; we compromised that I would oversee and produce and direct twice a week, and my assistant would do the rest. I would still do all the legwork, producing, and limit my Saturdays to mornings only.

By next semester, I am merely producing.

Fair enough.

I understand the need to keep status quo while we are in an important fundraising year.

I am also holding firm that I need to be a family woman again.

At one o'clock this morning, Roxie crawled into our bed and projectile vomited onto my husband's face. I changed the sheets, and she barfed three more times.

She's got the bug.

During the second sheet change, I said to Drama Daddy, "I'll stay home with her tomorrow," to which he turned sharply and let a small smirk seep out.

"Oooookayyyyy..." he said, scraping barf off of the hardwood floor.

We have napped. Watched Barbie (God help me) movies. Chatted. I worked from our bed. Discussed which fairy was the cutest in Sleeping Beauty (Fauna) and made Roxie her favorite sick food - salty, MSG-laden Top Ramen. (I know, I know - it's the Devil's Dinner, but it's sick food, for Crissakes!) She slurps up the florescent broth. "This is the food of the Gods," she said, closing her eyes.

It seems as though she's been stealing my lines.

Every so often, she snuck her little hand out of the covers to pat mine, momentarily stopping my fingers flying across the keyboard.

I could get used to this.

On my third Tassimo Caffe Verona (just like Starbuck's,only better), I blew on my coffee and realized just what has been eating me. (uh, see last three posts)

It goes something like this: Yes, I wonder where my husband and I have been while we've been weathering Hurricane Autism. Ducked and covered, yes, but now we emerge- and then what?

That's part of it.

My chickadees are growing up, thriving in school, and frankly, capable of heating things up in the microwave all by themselves. Miss M told me what Maxi Pads are used for, thank you very much, she won't be needing that little talk. They close their doors for privacy now, too old to have us in the room while they expose their tanned little bodies.

Part of it, too.

It's that now that the autism is - no, not recovered - just as I am of Mexican American descent, I won't ever be anything else - and neither will Miss M be anything other than her fantastically fascinating, quirky, generous, and hilarious self. She's remediated a good bit, yes, so much so that I needn't hang my hat on her autism.

It's been a convenient distraction, her autism.

It's been a very good way to throw myself into an important project - the most important -and not look at myself for a good, long time.

Not have to face those cracks in a marriage.

Not have to be responsible for anything but worrying, remediating, and talking, talking, talking about autism.

Work is a good one, too. It's awfully easy for me to become fixed on my work, my productions, helping as many kids as I see who need my program. That need - it makes one feel so important, so necessary, doesn't it?

It's so easy not to look at oneself, to look at chances missed, dreams deferred as we power on, being a generation of rescue.

That's a pretty strong responsibility.

This is not to suggest that my experience has anything to do with your experience, dear reader - I know and understand the gravity and importance of parenting a special needs child.
I'm expressing my awe at this stage of our familial development.

It's been a pretty nice way to -look over there! - distract the world away from the fact that I stopped, cold, in the middle of my performing career to raise children.
There is no regret, of course. But now, as the dust settles, there's nothing to hide behind.

I am at Ground Zero of myself, smoke flumes still trickling into the sky, as I rebuild and rediscover what foundation is left.

I believe that my daughter's "disability" was a very good excuse for me to go -as I love to say - Cassandra on everyone's ass. It hit me harder, made me crazier than anyone I know.

What was I afraid of? Too much success? Working so hard, who was I trying to please? Others? To what end?

What was I hiding?

Avoiding?

For now, I thank you, Autism, for giving me a focal point, a raison d'etre, something to rail against.

I won't be needing your services any more.

The road is open, beckoning, shimmering lilac, waiting for me to take my first tentative steps out of the Wonderful Land of Distraction and Denial. I'm sure, whatever the road, it will be endlessly fascinating and deliciously bumpy.

You coming?

what gives?

2008-09-13T08:40:00.000-07:00

I sat in the car wash, gripping the steering wheel. The girls cheered at the brushes, beating the car, as I focused on not fainting. My migraine beat on, and I strugged to keep my vision single and focused. We drove the 1/2 mile home, and I, at 5 in the afternoon, collapsed on the sofa and pretty nearly passed out.

Miss M tended to her sister, fetching her milk and crackers, providing crayons and paper - and, most importantly - finding something good on the telly. It was Friday, after all.

By the time my husband got home two hours later, I staggered into the kitchen to let him know that I'd decided that I couldn't continue like this anymore.

He looked up from his pomegranate and vodka and said, "I was wondering when you'd figure it out."

Let me back it up for you. I've had a big job since Miss M was two and a half. Maybe not an "important" job by many standards, but one that is important to my school/work, the students, and the parents. I've been teaching hundreds of kids, organizing and running a company of 100 students, and working 6 day, 70-hour weeks for almost 7 years. Recently, my program has gotten the attention it sought from the administration, and it's growth and success has garnered extra funding, new hires, and -sigh- a new building. I've been promoted to Department Chair, which I thought would provide me extra time, with that new break in my schedule.

Boy was I wrong.

I've literally been running back and forth, eschewing lunch or breaks, up at five, falling asleep with the laptop at my fingers in bed.

In one day, I met with my student, her parents, and her therapist as she threatened to stop eating because she had "nothing to live for" because I refused to give her the leading role because of her eating disorders program and her health conditions.

Wrung, I got to my office to find an email from a parent stating that her son was refusing to go to school because I didn't give him his coveted role, but a supporting one. Could I meet with her later in the day to discuss?

The email underneath that was from a parent of an alum asking me to call his son because he was lonely in college and his relative passed away.

As I was reading my emails, a student came to the door and told me that I destroyed her friend by "building her up" (encouraging to audition) and then not casting her.

Though we, as adults, realize that these instances are not my fault and a tad entitled and churlish, they seep into my psyche and make me feel, like, well, shit.

It wears you down.

I raced around after school, checking in on the benefit at Miss M's school (I'm volunteering) and picking up Miss M and Roxie - who was at her friend's house. I've been switching on with the friend's mother because the girls get too tired at aftercare and the friend starts to cry, which prompts Roxie to cry, and after all, isn't it asking a lot of a five year old to attend school from 8 to 5?

Miss M is solid and happy as ever, yet for the first time ever, is interested in after school activities and (maybe, she says) a playdate or two.

How I will manage this with an impending rehearsal schedule (every day until 5, Saturdays all day), I do not know.

It wasn't me who figured it out. It was my body. Headaches, dizziness, muscles lank and weak, and oh, the day I fell down the stairs on my way to the office (I am unfailingly coordinated and never do things like that), maybe it was an indication to slow down.

It's been hard to be my usual energetic and enthusiastic cheerleader self, because, frankly, the well ran dry.

On Thursday, I got an email from Roxie's teacher:

Dear Drama,

Thank you so much for the delicious cookies! I can't believe that you have time as a teacher and mother to make cookies from scratch - on a weeknight! Roxie says her mother bakes all the time, and that you're the best mom in the world. She's doing very well, and is very happy. Thanks again, Teacher X

I enjoyed the part about Roxie doing well and being happy of course, but the email slapped me in the face:

Who did I think I was? Superwoman? Was I suffered from do-it-all mother syndrome? I've taken great pride in doing it all in the past- but this, this is different. My girls are now at the point where they need a parent to assist with homework, sell the cookies, shuttle to classes. I am responsible for the well-being of so many kids with special issues and needs; my own children have sacrificed their precious time and mother long enough. This goes beyond political or being a feminist issue: This is choosing and knowing what you can and cannot do.

And what is important.

I'm stepping down, folks. I'm only working one of my jobs (the teaching/administrative) and relinquishing the Herculean task of the productions to my new assistant, who is a) highly competent and capable b) young and childless and c) handsome and fun.

The rushing I'll be doing is to ballet lessons, and even then, I'll sit in the car and read the paper and drink my coffee while I wait.

My girls deserve their mother in one piece.

I deserve my girls.

Oh, and on a happy note? I bought a Tassimo coffee maker, suggested by the erudite and sophiticated Kristen...and friends, it does not disappoint.

Plenty to be happy about.

Things are looking up.

remains

2008-09-06T21:41:00.000-07:00

Maybe it's the 91 degree heat here in otherwise London-foggy San Francisco. Maybe it's the back-to-schoolness of it all. I do know that my days have a sort of overexposed-photo quality to them, sort of as if my life were shot in a Steven Soderbergh film.

Anyhoo, we seem to be moving super slo-mo style in some sort of primordial goo, and managing to get through our days. Roxie has taken to Kindergarten like a fish to, well, water, and it's all learning all the time. She knows everything. Seriously. Just ask her. She reports on her classmates; who wore new shoes which day, and whose mother always comes late to morning circle. She can tell you what snack they will have next Tuesday at aftercare, and who farted in line.

She's off and running.

Miss M returned to her lovely little school with little fanfare; an old sage, she sauntered up to line and casually strode in with the group with nary a wave to my husband, who, by now, is 40 percent gray. Miss M, does feel, however, that it might take her some time to become accustomed to all of this socializing and play-dating that she was doing before the break; I just have to work my way back into it. It's exhausting being popular. She makes do with hanging with the new girl in her class, sitting on the bench at recess and telling stories, as the new girl isn't very active. Her legs hurt after PE. But I'm encouraging her to be athletic. Spoken from the kid who told herself stories alone on the bench for three years at her old school.

So, merrily we roll along. Hot and sweaty, but rolling.

Mama is in the thick of it at work; new position is kicking my ass with more beaurocracy, more meaningless meetings, more management of overworked, underpaid people. If I came home tired before, I positively drag my carcass up the stairs, scarcely able to do more than cook dinner, bathe children, and collapse into my pink sanctuary, lightly drooling.

Add to that a low-calorie diet with no frivolity or alcohol, and you've got a recipe for an epic meltdown.

My children are now school-aged. There is no more of the pulling-up of the pull ups, preschool, toddler anything, therapies, or cryptic emails home. For all intents and purposes, we're solid with this parenting thing. We know where we're headed, and by all accounts, we are looking good.

Miss M is pretty much who she is now - things seem to be preferences rather than problems, and it becomes a measure of motivation and desire to interact than deficit. For her, it's all about having the energy to - sigh - do the thing. Most of the time, she can get it up.

So what now? I am no longer dashing about to take M to therapies and groups, and betwixt and between, juggling rehearsals and classes. I no longer have this Autism thing pervading my every thought, sucking me dry of all of my energy. It's a consideration that comes and goes, but no, it's no longer the epicenter of my existence.

What remains is me, my job that has spread out exponentially, and my husband.

I look at him, and as I've mentioned, I can see how much we've weathered by the grizzle of his gray hair, the lines in his face, and the rounded stoop of his shoulders. God only knows how it's manifested on my body. I can't know.

I sit now, wondering, in the aftermath, who I am and why I'm here. What is my next move?

Sometimes people change after a life-changing event. Some emerge better for them. Some don't change at all. But couples? Changing together? In exactly the same ways?

I don't think it happens frequently.

I do know that I am scratching my head and looking over at my husband, who is yawning and staring at the wall, and wondering What happened to us? We've changed, certainly, individually - but together? What did we do before Floortime? What made us laugh, or have conversations unrelated to bills, schools, or children?

Emerging from post-traumatic stress syndrome, veterans often have a hard time finding peers - those who have similar experiences and can empathize. I have peers. All of you reading this, I'm willing to bet, are my peers, and judging from your comments, you are plenty empathetic.

I've been running with a partner, passing the baton, doing a good job with him. We're keeping the pace. As far as being in sync, or calculating movements - we are rusty.

Many posts ago, I posted some discontent about the attitude of the PTA at my daughter's school. I was hurting pretty bad, and everyone had a nice comment, or a suggestion. Carrie Wilson Link, bless her, simply said, "Having a special needs kid can be isolating sometimes. And lonely."

I was immediately relieved by her words, simply because she validated my feelings. She wasn't offering advice or a solution. She heard me. She saw me.

Sometimes that's all you need.

outside/in

2008-08-27T17:43:00.000-07:00

Because of Miss M, I've always had a soft spot in my heart for the film, The Little Mermaid. No, we are not Disney Princess people, per se, nor does Miss M perseverate on Disney movies, as many of our friends do. Nothing you'd expect.

You see, I've always seen her as Ariel.

When she was a wee echolalic tot, she didn't have her own words to express what she was feeling, so she'd borrow Ariel's. When she was frustrated, she'd intone, "Daddy! You just don't understand!," with the same inflection as the sweet teenaged mermaid. This is not news to many of you, my friends - I'm sure we are all well-acquainted with echolalia. She used lines sparingly, and in perfect context, and she always elicited a chuckle from us and we marveled a bit at how cleverly she compensated her lack of pragmatic verbal skills.

The echolalia resolved itself fairly quickly. Ariel would pop up every few months or so in other ways. Once, we were at the zoo and passed a large boulder. She climbed up on top and mimicked Ariel's famous emergence from the sea, positioning herself on the rock just so, tossing her hair back.

Just a few months ago, she expressed her feeling of freedom and exhilaration of attending her new school by comparing herself to Ariel's feelings of independence at the acquisition of her new legs.

So, suffice to say, she's had The Little Mermaid floating around in her head for quite some time. Just occasional glimpses. In there somewhere, you know?

At her recital the other day, her teacher had her sing the song, Part of Your World, the lovely ballad that Ariel sings when she expresses how she longs to be part of the human world.

The irony was not lost on me that my beautiful daughter with autism would sing about longing for and joining another world. Her teacher couldn't know what the song meant to her, to us. He just knew that her voice was sweet and well-suited to key.

Last Saturday, the historic and beautiful Castro Theatre, which houses some of the best vintage cinema around, opened its big gay doors and hosted the Sing-Along-Little -Mermaid. Hustling the girls and their friends through the legendary Castro district, we ushered into the theatre, received our sound effects goody bags, and settled in with our popcorn.

Looking around, scads of gay men wore tiaras and pearls and clacked clackers next to little girls doing the same. Everyone sang and hooted and cheered and jeered, and, of course, my favorite part was watching my girls watch the movie.

Miss M was rapt, paying careful attention to the directions and cues given by the ersatz Ariel in costume. She sang along beautifully, eagerly blowing bubbles and clacking and applauding when given the cue. She corrected me when I sang a wrong lyric, and downright snapped at me when I was supposed to use my clapper and not clap with my hands.

I watched her and the other children enthusiastically providing sound effects and dancing, and had a mini-epiphany, in that darkened theatre, that afternoon. People want to be included. (Most) people want to have that community, that feeling of singing in unison, the experience of a joint experience, clapping and clacking and whistling at the same time. Of all of the children I observed, Miss M was the most willing participant - the reason, I believe, is her strong desire to be part of that world, and having the added challenge of trying to figure out how. Events such as this are a delight to Miss M, as the expectations are laid out for her. There is no guesswork to contend with.

I noted that the parents around us smiled and nodded at their children, while Drama Daddy and I sang loudly and whistled and clapped and barked like dogs when Max the Sheepdog appeared. Autism has changed us, I thought, as I noticed the lines in my husband's face. There is no polite reservation in our family; it is our honor and charge to be wholly and organically present at all times.

A day later, back at school/work, I was in a meeting with a very large, morbidly obese teacher who was breathing heavily next to me. She was complaining that the majority of her students were "learning disabled" (they're not) and asked why she had to get all the "hard ones." In an aside, she leaned over and said to me, "They give me all the retards."

The room spun. I couldn't respond. The word shocked me, repulsed me, and suddenly the credibility of this otherwise fine teacher disappeared. I assembled retorts and responses and lectures in my head. I took in this woman, herself disabled by her own self-infliction. She wheezed, and struggled to sit up in the special extra-wide rolling chair she uses.

I stared at her, not with anger, or pity, but in disbelief. She looked at me, her eyes hard in her porcine face. She was challenging me. Baiting me. Making a twisted bid for my attention - hoping that I would see her. "I'm sorry, Drama," she demurred, "I forgot how you are about that stuff," she said, and hefted herself up. She struggled out of the meeting, clutching her keychain that I've seen so many times before. It features an acrylic framed-picture of her severely disabled brother.

Some might call him retarded.

As she walked away, I thought about her story; why she might have used that word, why she would slowly kill herself at 500 pounds, why she chose me as her unfortunate confidante. What was her story? Why so angry and sad and hurtful?

I might be out on a limb here, but I do think that my Little Mermaid experience had something to do with the morbidly obese teacher, her unfortunate use of the word retard, and perhaps the longing of one person wanting to belong to another world. Maybe she needed to be seen? Is that the reason for her grotesque claim to space - so that she doesn't disappear? Is she eating out of grief for her brother?

Let me make this clear: She is not to be excused for her repugnant use of the word.

But it does give me pause. And has me wondering.

Does she need to be lambasted? Absolutely.

Does she need to be included? Embraced? To be part of something whole - a bigger community to meet the vastness of her feelings?

Yes.

To be part of our world. Somebody's world.

I'm thinking that's why people grasp at base, primitive, ugly words.

Unlike Miss M, they haven't the grace to use someone else's words until they find their own.

to work

2008-08-21T18:57:00.000-07:00

Correct me if I'm wrong, but it seems to me a pervasive sense of concern and - worry, perhaps? - among the circles of special needs mothers I know as we steer closer to the start of school. In the supermarket, fellow mothers approach me and surreptitiously ask questions about placement, IEPS - is that teacher autism friendly? - within seconds of our perfunctory greeting. I receive furtive emails fraught with question marks from mothers who just want their kids to keep up and not suffer.

It is different this year because finally, at last, Miss M is blissfully ensconced in a loving and supporting environment, IEP-free, beholden to no district laws, and given the finest educational opportunities that our many dollars can buy. I no longer sweat the teacher, or the playground, or the lack of birthday invitations.

That doesn't mean that I don't remember,or feel your pain.

Just this morning, the unsinkable Miss Roxie began her first day of Kindergarten. To observe her, I understand the meaning of Kindergarten readiness; the social and academic perfectly measured and ready to go. In spite of her verbal pyrotechnics and saavy, Roxie was anxious. Nervous, even. She arose this morning, chattering and charming, modeling her uniform.

She vomited three times on the walk from the car to the school yard.

As she leaned over, careful not to hit her shoes, she sighed heavily and said, "Mom. Look. I know that I am going to do great at this. I'm just nervous because I don't know what is going to happen. Do you think you can understand how I'm feeling?" as she daubed at her mouth with a tissue.

And then she skipped into the ornate gates and proceeded to smile, hug teachers and wave goodbye.

The anticipation of the unknown. Roxie knew that her outcome was going to be great; she just needed to know the set up and flow.

I returned to work today. As I was walking through the courtyard, the mother of one of our top scholars approached me. Her seemingly "perfect" daughter was diagnosed with anorexia nervosa last week. Understandably, her mother is devastated.

She squeezed my arm. "You have no idea, Drama," she said, wiping a tear. "It just comes out of nowhere - and this damned disease is so pervasive and insidious. It just colors your whole family." She proceeded to go on about her concerns that her child would have to drop out of school, that she'd fall behind, that she won't recover - her worries were well-founded and not surprising.

And familiar.

I walked away and empathized with the mother. To receive a shocking diagnosis. To not know how to proceed. To worry that your child will never recover.

We know these feelings, yes?

Growing up is hard. Development is uneven and messy, and seemingly, challenges parents until children are well down the road to adulthood. (Okay, who's kidding?) Or beyond.

As parents, we wish to spare our children pain, to provide the answers that will allay fears and ensure success.

There is no magic bullet.

Instead, we must walk through the fire with our children, leading, guiding as well as we can, but truthfully? I don't know the path much better than you do; my knowledge is shaky at best, and my kids - most of the time - are far more facile at figuring out the paths and shortcuts.

I've been thinking alot about mission and purpose lately, and like Michelle O'Neil, I am certain that my daughters are here to do great things.

I used to think, for Miss M, that her "great things" would be in the future tense; that I sort of couldn't wait to get through this autism thing to get through to what she was really meant to do.

I realize now, that her great things are here now; the way that she challenges and inspires me, her perceptions and the way, quite simply, she has made me a better human being. A deeper human being. A human being who, yes, suffers and worries and whispers to my fellow comadres my darkest fears - but a human being who is, at the very least, living the unexamined life with two very, very astute teachers.

I have no good advice for you, or comfort, really. We move through it, softly or fiercely, but the point is, we do it together.

We get them through.

All is well.

miracle

2008-08-15T21:41:00.000-07:00

Do me a favor.

The next time you are sitting in an IEP, a teacher's conference, a diagnostician's office, or someone looks at you the wrong way at the local playground...

Watch this video.

And remind yourself

that

your child

can

do

anything.

preparation

2008-08-14T05:36:00.001-07:00

I remember, very distinctly, in my grief, and shock, and anger, in those early days of diagnosis - those bleak days where so much was unknown and unclear and unseen - my eldest sister (who does not have children) said to me: "God doesn't give you more than you can handle. You were meant to be this child's mother."

Now, to the innocent reader, that seems like a pretty nice thing to say.

To those of us who are in the trenches, in muddy boots and pinged helmets -

It's bullshit.

I remember wondering, moments after she'd said this, how far I could shove her teeth up her nose.

This was God's plan for me? It certainly wasn't mine. I envisioned a brilliant but quirky kid - a la Jonathan Lipnicki in Jerry Maguire - saying the darndest things and stunning us with her insight and wit. I envisioned a kid deftly excelling in the arts; legions of artistic, quirky/brilliant friends at the ready. Her name is a literary reference (both formal and nickname), and when she was born blonde and olive skinned with gold eyes, I knew that I had a star.

I was never one to envision an athelete, or a cheerleader, or a "popular" girl - just one incredible Abigail Breslin type, who exuded sophistication and wit beyond her years.

It's there, though; that desire to have my children love what I love and to sing the same songs that I do. Narcisscism, perhaps? Of course. Has to be. But doesn't every parent want that thread of connection with their child; academics surely want readers, and sports fans want a child who will watch the game with them. Surely?

I am aware, as you know, that our children are not us, and no, I never push that whole flair-for-the-dramatic thing on either of my girls.

When Miss M was identified with autism, I remember my dream not only of Jonathan Lipnicki fading away, but any hope of my daughter doing anything at all. I wondered if she would ever learn to use pronouns properly, let alone get her ass on a stage.

I felt very disconnected with who this child would be.

I think about my training as an actor - all eleven years of it - and I think about how it brought me to where I am; semi-retired from the stage, and training a new generation of actors. Passing the baton.

As a mother, I think about my mother-training, and wonder aloud, "What was that plan?"

When I was about M's age; maybe ten or so, a house across the street had an addition put on. A top floor. My neighborhood friends all watched with interest, as it was the seventies, and kids didn't watch TV in the afternoon. Months later, an older couple - perhaps in their early 60's - moved in with a large foster family. Of handicapped kids. Sort of the Brad and Angelina of the AARP/Special Needs world.

My friends were polite, but sort of stared, as the rest of the neighborhood did. My parents made it a point to talk to the family, and children, and act completely normal. We do what our parents do. I did the same.

Robby was the most high-functioning of the kids, and he sat on the stoop every morning, waiting for the "short bus". I would come out in my uniform, and we'd talk. He had a low, loud voice, and you could see curtains flutter as people peeked and listened to our conversations. He asked me what I did at my school, and why I had pink tights on at night, and why I wore those weird "onion rings" on my head. (He was referring to my ballet hair and uniform, I think) I remember that the rest of the kids came out with walkers, or holding onto aide's hands and piled into the Regional Center bus. Flora, the older Foster mother, looked tired and always a bit more ragged in the mornings. I think she spent the late morning cooking and cleaning, and was always standing at the door, ready for the afternoon drop off.

One afternoon, I came home from school and found my Barbies gone. "Oh those? I thought you didn't play with those anymore. I gave them to the kids across the street," my mother said casually. I was horror struck. I had a whole collection of paper towel dresses colored with marker in that box. Malibu Barbie? Gone?

I marched across the street. Flora opened the door. "I'd like to play with the kids, if that's okay with you," I asked, and I remember her home smelled warmly of tomato sauce and baking bread.

She smiled. "Come on in," she said, and led me into a large sun room. There were toys alright, and some kids jumped on trampolines. Others stared into space. Some drooled. Two were chewing on my Barbies.

I sat down with Robby. We played a bit; I don't remember what - but I do remember that I spent most of the time prying kids off my neck and avoiding being pinched and one girl, in particular, who I spent most of the time holding her hands. So she wouldn't hit me.

But she smiled and made noises.

"Oh, Ginny, be NICE," Flora clucked, prying her vise-like grip off me. Flora looked at me. "Ginny, she's austistic," she said. "She don't mean no harm. She just likes you," she said, stroking Ginny's tightly coiled hair. "This one over here, she's retarded, and he's Down's and we don't know what he's got exactly, but he sure is cute, huh?" She continued this abrasive manner of introduction.

I didn't know what she meant by her seventies politically incorrect diagnostic explanation, but I didn't care, either.

Flora looked at me. She had those sparkly cat's eye glasses, and I remember a little sweat mist on the top of them. "Thank you for coming by, today," she said, "everyone else in this neighborhood stares and don't say anything, but your family is always real nice to us. You come anytime."

And I did. I spent most of my time wiping and extracting pinches, but I did. And I didn't think twice about the Barbies.

Later in my life, I became adept at teaching. The prestigious theatre I worked for got a grant. Teaching drama to girls in a lock-down facility. The education director scratched his head and looked around: I was the only minority who could really teach, so he bumped my pay and sent me. I removed my jewelry and shoes at the glass doors, and a huge bodyguard sat in on class, but we made some progress. After that, I taught Improv to girls in a halfway home.

I made a little name for myself, teaching drama where no man had ever taught before.

Did my life prepare me for today?

There were clues. Flora at the moment that she told me Ginny was "autistic" - I remember thinking that this was a strange was of showing artistic flair. But I remember how Flora said the word.

I remember going to a party in my twenties, and a young girl staring at me for hours. The hostess pulled me aside and said, "Don't get freaked out; Gemma is just autistic," as I quickly spun my head around to see what "autistic" looked like. I asked what that meant. The hostess drunkenly whistled. "Well. She hears you, but doesn't answer. Stuff freaks her out, and it doesn't. She can't talk. She wears diapers, but, like, is really smart."

What to do with that information? But I remember her words.

There were tiny signs along the way; must have been, because I remember these conversations perfectly. I took jobs that no one else would take, with kids that no one else wanted.

One thing, though. When it came to my own child, it was much harder to play and walk away feeling fulfilled, as I used to as a teacher. It was, as you can imagine, personally charged.

I put in my hours, and told myself to expect nothing, and appreciate everything.

I've changed my theory.

Miss M is in a theatre day camp right now. She asks me to drop her off at the corner, and skips down the busy city street, and pulls open the door with her bag slung over her shoulder. She gives me a thumbs up, and is swallowed into the theatre. She emerges six hours later, gets into the car, puts her hands over her eyes and says, "Man, they really worked me today. We did blocking all day. Do you know what that is?" as if I were a theatrical novice. She refuses to tell me more about her day,"I'm fried, Mom," she waves me away.

She controls the CD's in the car in the morning, sitting with our huge CD book on her lap, flipping the pages. Yesterday she loaded a song. Strains of "Some People," from Gypsy played. My signature piece. My audition piece. My award winning role. It is about an obsessive stage mother who realizes that she must let her daughter live her own life, that she must be let go, that the mother must pursue her own life.

No accidents.

I never play that CD for the kids. It's my private belt in the car, my little before-kids secret. My old moment of glory.

"Where did you find that?" I stammered.

"Oh, well, Mom? It's sort of a secret, but this is my big number in the show on Friday. Shane says I've got a big presence, that's why I have this part. Listen, if you don't want to be cut, you practice. This is a cut-throat business," she said, as her strong (much stronger than mine ever was) vibrato hit the high C. No problem.

She waved her fingers like I do, air-conducting. I started to speak. "Shhhh!" she says sharply, as I do. "Listen to this part," she says, her eyes closing, as I do when I really, really like a song.

It's all in the preparation, I guess.

But you know, I'm really, really okay now if she doesn't like the things I like.

'Cause we're connected like that.

the endless cookie baking is about to commence

2008-08-10T21:00:00.000-07:00

The day started out with my mother calling at 8am. I won't tell go into the nature of the call; just know it ended with my mother sniffing, "Well, if you ever find the time, call me some time."

I said two words during the entire three minute conversation. She wakes me up to guilt me out? She's got mad skills, that one.

It set the tone for the rest of the day; it was intermittently happy and fun - we took the girls swimming - and then I'd plummet into anxiety and uneasiness. I worry about the tiniest things.

This isn't about my mother, though, bless her, she has done a consistent and excellent job of alternately loving me and mentally beating me up all my life. She's just the geriatric catalyst.

No, this is about the anticipation of the unknown - the school year is about to begin - and I am paralyzed with the amount of work before me. I have a new position with many more responsibilities and management, as well as my staggeringly busy job of running an entire department serving 100 plus students.

It takes a lot out of me, and the thought of going back to the grind - early mornings and shuffling the girls and making my way home at 6pm, picking up the slack at after the girls go to bed - -

It's overwhelming.

I suppose it's a little like tonight, after a day in the sun and swimming and exercise, Miss M broke down in tears as she was reading to me. "It's just too much to read with feeling," she snapped at me, as I sat silently next to her.

No one asked her to read any which way.

The expectation was on herself.

I suppose that today, this weekend, as I press my lips together until they hurt, my shoulders knotted, my fingers stroking my fingernails over and over - the tension is about the fear of the anticipation and the pressure to perform.

I imagine that is what autism can feel like at times - bracing oneself for the barrage of sensations, not knowing what to expect, and the insurmountable pressure on oneself that results in stasis.

I understand, intellectually, what is going on.

It's not helping the lip twisting, or the nail stroking.

And can I be honest with you?

It's hard to parent when I'm like this; unsettled and anxious, looking ten paces ahead and distracted beyond measure.

I get a little tired of the whole 24-hour-a-day parenting thing. I'm surly. Sulky. And not patient.

Of course, I then begin to judge my parenting, and that sets off a new cycle of worry and anxiety.

I have pared down my duties tonight; to do nothing but try to relax and breathe through this. I have but two duties:

Stay out of the kitchen.

One minute at a time.

perrrfect

2008-08-06T10:08:00.001-07:00

Not long ago, the girls and I attended the end-of-year picnic for M's school. Some mother I'd never seen before introduced herself, extending her well-manicured hand to me before I was blinded by her 3 carat Tiffany ring and matching earrings. She introduced her son, who attends the school, and continued talking until she laid her eyes on Roxie. She audibly gasped. "Is this yours? She - is - perrrrfect!", to which Roxie went all Puss-in-Boots (Shrek reference), her eyes twin brown pools of warm chocolate. "I always wanted a beautiful little girl like this, look at her in her swimsuit and her adorable little hairdo, oh I am so jealous of you, Drama Mama!"

What does one respond to this?

I noticed that Miss M and the poor son of this - er- woman - stood quietly by our sides. I made noises about how great they were, then shooed everyone off to play. I nodded politely at this woman, and then quickly beat my ass away from her as quickly as I could.

Who says those things - especially at a picnic for kids who maybe aren't so perfect?

How does my "perfect" child react to this? How does it shape her thinking? It is unfair really, since there is so much more to this little being than "adorable" or "perfect".

It's true. Roxie is adorable. She, as I've told you, is the kid who has a social calendar to rival a gay man; who gets invited to the parties of the siblings of her friends. If I could syphon off some of her social grease and distribute it to the autism community, I would.

On to my point. So. Roxie.

I got some calls a few months ago from parents asking me to put Roxie into day camp with their children because their children just "loooove" Roxie.

They wanted me to send her to this fancy schmancy Day School Day Camp we'll call "Overpriced Bullshit Camp".

There is a back story. Years ago, Miss M's friend - who also has PDD-NOS - was admitted to Overpriced Bullshit Camp's elementary school. He was expelled a month into the school year because "He was not a productive member of the community."

Um.

Hello.

I was not eager to place Roxie in this camp. However, I decided to place her with her friends, and not penalize her neurotypicalness.

How nice of me.

Perhaps I had a chip on my shoulder the other morning as we entered to a lovely classroom, classical music playing, children calmly doing puzzles, playing with Flubber, doing the water table. Sheep bayed outside in the school farm (yes, I said it) as some of the children worked on their spanish lessons.

The children.

Perfect. Politically appointed in the latest, hip gear, with names suggesting another time and place. Or piece of agriculture. No one spoke out of turn, spoke in loud tones, or even had grubby fingers. Roxie walked in and was immediately hugged by 3 of her friends. The lead teacher reminded them to wash so that they could make organic quesadillas with salsa from our garden for snack.

Puke.

The mother next to me spoke to her friend: "This is really just the perfect school, isn't it? I mean, everything is just spot-on?"

As, you know, I do, I chewed on that statement for awhile. It followed me to my coffee haunt, where I always order my 5-shot Americano prefaced with "Don't judge me, but I'd like..." I sat. I thought.

Why does it have to be perfect? Why does everything in life have to be according to our impossibly high yuppie standards - children included? This perfect school accepts only perfect children, thus ensuring its perfection - where is the challenge? The interest?

The learning?

My God - those poor children traipse around the earth thinking that everyone is like them. And then they make another generation of children. Like them. Is there no end to the perfection?!

Perfection is pervasive. It peppers my daily speech. My Gay and I search for our perfect Bloody Mary. We try on clothes and coo "Perfect" to each other. In our work, we often tell each other that something isn't going through until "it's perfect".

As an artist, my life centers on the aesthetic, the effect, the outcome. I like crisp direction and simple yet stunning designs.

The secret, to any masterpiece, is the thing that is off-centered; the errant stroke, the tiny detail of interest that you might not notice at first, or even second viewing.

As my Rumanian mentor always told me, (after he said that I bit life in the ass) - and I will impart this to you, my good friends (but only if you read it with a heavy eastern european accent):

It is the crack that makes the bell.

It is the unexpected that takes our breath away; it is the thing that we haven't considered before that makes art art.

Where have we gone, as a community of parents and people? Must everything be pretty and perfect and quiet and well-behaved all the time? Isn't life sloppy? Isn't that the fun - making something out of what you're given - making something unexpected and beautiful? Isn't that what makes a teacher a teacher - eliciting things from the kid that no one has any expectations of?

If you ask me, we have gotten very lazy in this country of convenience.

We need to look harder. And longer. And look again.

customer service

2008-08-01T21:04:00.001-07:00

I've had this post burbling up inside for a week or so, but, well, life has been busy having its way with me.

So here I am.

I've been wanting to write and tell you about our vacation, and how the personal, as it always does, became political, how I nearly beat a cartoon character to death, and how one slip of paper spun my head a bit.

To begin. If you are coming in late to this drama, know that my husband and I took our two children to Disneyland for a 5 day vacation. Now, for some people, the thought of taking a child on the spectrum to The Most Stimulating Place On Earth might be cruel, thoughtless. But if you've been following the story, my daughter in question digs the place, and well, that is where God speaks to me and like any good pilgrim, I have to see the signs, or at the very least, the face of Christ in a tortilla - er - a Mickey Mouse pancake.

Besides. I really, really like the rides.

So. My husband. I guess there are a few things you should know. He is an amazingly circumspect guy, very frugal in his feelings and with money, he is honorable to a fault, and expects nothing from anyone. For growing up mightily entitled, he has no delusions about entitlement or due.

He saves that for me.

So when my daughter was being identified so many years ago as special needs, or having PDD-NOS, my husband was the guy thanking the Unified School District for the requisite hour of speech therapy, while I was shaking my fist and demanding more, wheedling every bit of anything I could get for my daughter. I demanded things, while he was sure that she'd "come along on her own time" and patiently did our home exercises and therapies, but my friends, he left it up to me to be Cassandra-with-her-hair-on-fire.

When we got to Disneyland, there was a mistake with the nice hotel we use, and we were treated to a double suite with four bedrooms and six beds, two bathrooms and four televisions. This pleased my husband to no end, (like I said, he's thrifty) and I took it as an omen when I found two $20 bills furled in front of my hotel door, like a gift, as I entered.

On the first day, I carefully monitored Miss M, what with the killer heat, crowds that resembled passages to Dauchau, and the constant parades, fireworks and confetti thrown into our faces. Miss M was lovely, pleasant, engaged - and I can share with you that this is what dysregulation looks like at nine years old:

"Mom, I think it's time to go back to the hotel for a swim and a rest."

So there you have it. OT and fun all at the same time. Done.

My husband and I plotted the days like the pentagon, with maps and plans for the least amount of waiting or stimulus possible. We did fireworks from far away. We went to documentaries when it was too much (those air-conditioned theatres were a treat, and Miss M loved the information about the genesis of Disneyland. I, on the other hand, thought about the Churro stand out front) Miss M was game for everything, and took very good care to take care of herself, wearing a baseball hat and drinking water, chewing gum - little things that took the edge off of what must have been an assault to the senses.

I slyly mentioned to my husband that my online friends had mentioned a "French" pass (that is, a pass for children with special needs, coded with our little term co-opted by Mom-Nos, who lovingly refers to our kind as the people from France) My husband was aghast, and said he'd feel bad taking the pass away from a kid who really needed it. I agreed that Miss M was doing brilliantly, but she had to work so hard at it; wouldn't it be kinder to just give her the break from the crowds and take the shorter, less crowded separate entrance for the rides? It was truly one of those moments where we could sit and analyze whether or not Miss M qualified for "special needs" anymore, but as I've mentioned, we were on vacation and I wanted to play it cool. So, like I always do, I said (through gritted teeth) that we could discuss it later.

The next day, Miss M had one request: "I know that I'm very spoiled and you both did so much to get us here" (I'm not kidding, she talks like this) "but I would be ever so grateful if I might buy an autograph book and go to the character breakfast."

No sweeter words ever spoken. I quickly mortgaged our house and made reservations for four at $30 a piece and brought my camera.

We entered, and the girls got their mouse pancakes. We were seated in a corner atrium. We were told that the characters would approach every table; there was no need to bum rush the animals. And we watched as the other children received balloons, buttons, stickers and took pictures like the British paparazzi. My children, on the other hand, sat amiably. Waiting.

I got up to refill my watered down Nescafe, and passed the floor manager. He was nineteen or so, with a fine peach fuzz on his chin, and he nodded companionably. I began returning to my seat, when I stopped, mug in hand, and said sweetly but passive aggressively, "May I change our seating location?" The young man swallowed, his Adam's apple bobbing, and squeaked, "No, ma'am. Company policy mandates that - uh, is there a problem?"

I flexed my toes in my high heeled sandals and did a little kick that I hoped was charming. "Oh, well, I'm just wondering when someone will come to our table. My kids are almost done -"

"Ma'am, the characters go to every single table."

I looked over at the other tables. The characters were having a freakin' orgy with the other kids, while Miss M clutched her autograph book. Waiting. I thought of her experience at her old school. I thought of how fucking hard she works every single day of her life to integrate, to belong.

I could feel the heat rising on the back of my neck. I became acutely aware that I was dressed ridiculously, in two Pocahontas braids, high heels and shorts - something that no self-resecting 42 year old woman should do.

"Well,sir, I just know that I have been sitting there and I only got one god-damned animal over to see my kids and that's because I asked and dragged his behind over to our table." I was sure he was looking at my coffee-stained teeth.

I was positively Shirley MacLaine in Terms of Endearment, trying to get the dying Debra Winger her last dose of morphine.

The boy manager got steely. "Who? Who went over? I need a name." He was all business now.

"Eeyore. Eeyore was the only motherfucker with the decency to stop by," I said, and as I walked away I added, "I'm sure Walt didn't have this in mind when he called it The Happiest Place on Earth," to which I realized I'd gone too far.

I went to the restroom to splash water on my face and returned to find a small crowd of characters at our table. There were characters I'd never seen before. Who knew Goofy had a son? I thought that he was pansexual. My children got buttons and balloons and stickers, and I found Roxie nestled in Minnie Mouse's lap with a lollipop. Miss M was gracious and polite to each character, thanking them profusely for stopping by. On our way out, the boy-manager gave the girls special Tinkerbelle straws, and me, a very tight smile.

My husband looked at me.

I shrugged.

He smiled.

We got outside, after our personal Disney orgy, and my husband put his hand on my back. "Whatever you did, I'm glad you did it," he whispered, before I fainted on the pavement and mopped myself up. He pointed at Miss M and made a thumbs up to me. "She deserved that," he said, and we held hands for the first time in a year.

We vacationed happily, with the girls wanting for nothing (I might be a little excessive in the treats-and-be-merry department) and, more interestingly, asking for nothing.

There were a few attractions that, no matter how I strategized, I would be unable to get us on without 1) heat 2) crowds and 3) a loooong wait. Miss M volunteered to wait, pulling her hat firmly on her head and reaching in her bag for earplugs, which I hadn't seen in at least 2 years. She and I were on our own that morning, as Roxie and Drama Daddy were sleeping in. "Come with me," I told Miss M, as we navigated our way through the crowds. I stepped up to customer service and I told our story. The woman nodded and handed me a pass engraved with an arrow pointing straight ahead, and a curving arrow indicating a detour. That's exactly what autism is, I thought, as I thanked her and tucked the pass into my bag.

We met up with Drama Daddy and Roxie, and over waffles, I said, "We'll be going on Toy Story Mania," casually, as Drama Daddy caught my eye. The girls cheered and finished their breakfast, and we headed for the handicapped entrance. The employees let us in immediately, and with a big smile, and never once looked askance at why this normal-seeming family might be needing special assistance. The girls loved the ride, and we used the pass only once more, for the submarines.

I would have used it a lot more, if we had needed to. I suppose that special needs means a lot of things to a lot of people, and sometimes, the lines can be blurry. What I know is that one girl worked extra hard on her vacation to play by everyone else's rules; wasn't it just balancing the scale just a little to give her a free ride pass for just one day?

But friends? The power knowing it's in your pocket? The power? The knowledge that someone has your back?

Heady stuff.

sweet prince

2008-07-25T18:00:00.000-07:00

Words elude me, as I'm sure, they do you.

Vicki Forman's son Evan, passed away on Thursday.

Such a little boy, and such a large presence. He touched many lives.

My favorite monologue, from my favorite play - a small gift for a large spirit.

What can we do? We must live out our lives... Ah, then...we shall enter on a bright and beautiful life. We shall rejoice and look back upon our grief here. A tender smile -- and -- we shall rest. I have faith... fervent, passionate faith. We shall rest. We shall rest. We shall hear the angels. We shall see heaven shining like a jewel. We shall see evil and all our pain disappear in the great pity that shall enfold the world. Our life will be as peaceful and gentle and sweet as a caress. I have faith; I have faith. We shall rest. We shall rest. We shall rest.

- Uncle Vanya, by Anton Chekov

In lieu of flowers, please send contributions to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children's Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

re-covering

2008-07-18T18:19:00.000-07:00

Despite my utterly crap week, there is a beacon at the end of the tunnel.

We leave for Disneyland tomorrow. Remember this story? And how it ultimately changed me? Brought me out of Da Nile?

Uh huh.

We leave tomorrow.

Activity books, water bottles, snacks, magazines for Mommy, driving tunes for Daddy. It's all there. Sparkly swim suits, new sexy shades for Miss M, and oh yes, a new pair for the mother, too.

It is particularly thrilling this year, because the girls are so big and capable now to ride rides and see things, and fireworks are now a non issue. My Miss M is the easiest traveler on the planet, and Roxie is the party fiend that closes the park down at midnight, little arms pumping in the air, little chipped-polished toes still dancing as we pull the sheets around her dirty little feet. We ride rollercoasters. We listen to loud music. Cheesy stage shows are de rigueur for this family, whose spawn fancy themselves theatre aficionados.

Life is good. Miss M is rocking her brave new personality - "Did you even notice how popular I am, Mom?" and is cooking dinner, playing in parks, begging for playdates, and loving every inch of her new self emerging. She has requested and picked out new clothes. She has gone from her nickname to her new, grown-up name. She has made a few attempts at phone conversations with friends. She has a crush.

The confidence that comes with repetitive successes, of a stream of experiences, has completely built its foundation and laid the groundwork for her present foray into the world of friendships. Some are more reinforced, depending on the child and his/her ability to engage - and sometimes, it just doesn't matter that it's perfect. She is content to be with her friends and read, or talk, or run around a playground, or even snuggle and watch a movie.

The fascinating part of all of this is that she has been talking to me about memories that she has - memories that I wasn't even aware she retained. Mom, do you remember Casey from preschool, and that time she spilled the milk all over the lunch table? (This is from the time period that she sat in the book nook and avoided peers at all costs) She recalls places, times, years, and most importantly, people.

We weren't even noticing that she was taking it all in.

I did all the things I needed to do to help my daughter, warily, and sometimes suspect of the outcome. I mean, was going to social skills playgroups ever going to pay off on the playground? Was the super-expensive camp going to make any difference over the community rec center camp, if all she was going to do was read in the corner?

I'm not sure. I'm not sure where or what or why it all happened. Just that it did, and continues to do so.

So as we build on experiences, and setting up successes and gain momentum on this developing of friendships and, well, yes, taking a collective bite out of the ass of life, I humbly advise: Do it all. Do as much as you can, or as much as your child will allow.

It matters.

It comes back.

Now, if you'll excuse me, we're off to make some more memories.

Because in the end, that's what you've really got, isn't it?

the woods

2008-07-16T20:53:00.001-07:00

I'm going to keep this short and sweet, well, for one, because I have PMS and keep crying, and two, my breasts need to go lie down.

It's been a hard week. Without going into too much detail, I've had some health concerns, a friend commit suicide, and my mother is on my ass again. (But that never seems to go away)

It's been one of those grab-you-by-the-throat-weeks, with no reprieve, and I've danced as fast as I can to cope.

Then it comes to me? Why cope? Why manage it? Move through it, you know? Which for me, means wallowing about and feeling sorry for myself. So, here I am, moving and grieving - and I am given little signs that there is life all around.

Witness Miss M playing with her friends, her emergence now so unavoidable that I have to tell you, that yes, miracles do happen;

Emails from new friends coming in to ask questions and make polite bids for encouragement as they unravel this autism ball of yarn that we are all busily crafting into our own unique granny squares;

IM's from lovely people at unexpected moments, just in the nick of time;

Parents and now dear friends who are there for my girls, picking them up, providing snacks and the opportunity to explore new territories. I have people. I have a community. My girls belong.

I received a few emails this week, of those parents wishing to know when, exactly, did I know that we were "out of the woods"?

I don't know that we ever know that we are out of the woods, autistically speaking. Hell, the way I look at it now, is autism the woods? Isn't it just a different path? A surprising little place where it's beauty can take you by surprise, and at the same time, frighten you with what's beyond its horizon? The unknown?

But I do know that when my girl showed signs of being comfortable and happy, of engagement and joy - I knew that we'd be okay. Her translation of joy has had many faces. All of them fascinating and unique and surprising. And yes, full of life.

For me, I needed to find other people who spoke our language. Who had found the sweet spot in the woods, and knew the road. I knew, once I gained a momentum, a nom de plume, and a blog, that I was home. I was seconds away from your understanding, a dirty joke, or even a vent. Ain't nothing I can't do without my laptop. I can have a support group while perched in my bed while watching Jeopardy. How's that for service?

I used to think of my daughter in a fog - that I couldn't see who she was, that somehow the picture was muddied, and I couldn't see clearly. Today, she is in technicolor. She is so bright and clear, she is high definition, baby.

And to be honest, I don't know where it began:

Was it her, or was it me?

love to love you, baby

2008-07-12T21:28:00.000-07:00

Roxie started a new ballet class today; one that is (roll eyes here) semi-private and is designated for the more focused student.

I know. Gag me, right?

As I've told you all before, this chick is serious about her dance and is determined to do it well.

So we went.

It was the first day, and I was surprised to see the other two students there. They were three years old, and one still had the tell tale bulge of the pull up under her tights.

The parents eyed me warily; me with my big sparkly earrings and sparkly eye liner and my child with the blue nails. She had on some Juicy Couture flats (Ebay, I promise) and I could just see what they were thinking: Spoiled and bourgeois. The parents were identical in their North Face fleeces, dishwater hair and sensitive all-cotton clothing. They spoke in hushed tones and snuck peeks at us out of the corners of their eyes.

I attempted to make friends in my slightly loud and borscht-belt sort of way.

They weren't buying it.

When it came time to drop the kids off in the studio for their "trial" class, I noticed that I kissed Rox goodbye with a pat on the bottom, while they held on to their children and whispered things in their ears. I noticed, but kept walking, as their children were two years under the age limit and in an "advanced" dance class. I'd be whispering to my kid, too. Whispering that we should get the f*ck out of there.

I bought coffee and shoes during the hour, and returned for the verdict. Roxie, of course, made the cut, while the other two were "really too young" for the class. The parents went on about how "mature" their kids were. Then it came out that what they really wanted a class that fit around their kids' nap time.

I chuckled to myself as I listened, helping Rox take off her shoes and put on her warm-up suit.

Imogen, the 3 year old in princess pull-ups, had a little non-violent protest as she lay on the floor, refusing to move. Her mother spoke to her in those same damned hushed tones - reasoning at first, cajoling, then trying to bribe her with a special video.

No go.

The mother then proceeded on, asking the child if what this was really about was that Mommy had a date, and that Imogen would have a babysitter. Mommy is lonely, she said. Mommy needs some fun, too.

Way to go, Mommy, I thought. Way to screw your child up in front of an audience.

The mother continued on, as we all left out the door, and the instructor was standing at the front door, waiting to lock up for the night.

She and I exchanged glances, she shrugged and mouthed, "See you next week." She was still standing there in her tights as we crossed the street and disappeared down the block.

I thought about what really bothered me about the pasty-assed parenting that I witnessed.

Granted, I haven't spent much time around the Neurotypicals lately, as we carpool with another family, and someone else has picked Roxie up from school for me. I've mostly been hanging with our ASD/ADHD/LD posse.

I suppose it is the sort of ease that I assume typical parents have. It bothers me when they abuse their parental authority and dissolve into a heap of mush around their kids. Or assume things about their abilities and behave as if they are entitled to every class, school, or group.

I have one child in each flavor.

We don't do mushy in our house.

Homie don't play that.

I'm not trying to compare the two experiences, or make sweeping generalizations about parenting neurodiverse vs. neurotypicals. I just notice that our people for the most part, are very good at parenting.

This is what I love about you, dear reader:

I like that you speak slowly and clearly to my daughter without condescension.

I love that you structure playdates around limitations and preferences of the children.

I love your firm, calm voice, and your air of authority, never wimpiness, when dealing with the kids.

I love that you set limits and boundaries with your kids.

I love your boundless love for your kids.

I love how responsible you are when we carpool each other's children.

I am grateful that you mention little successes to me that I might have missed on a field trip or a class event.

I love that you are clear with plans and directives.

I love that, when a child has a meltdown or hard time, no one looks askance.

I love that you kindly ask if you can help, in an unobtrusive way.

I love that you let it all hang out, most of the time, and that you don't find anything wrong with my quirks, or those of my family.

I love your deep sense of gratitude.

I love your support.

I love your sense of humor.

I love your empathy.

I love how strong you are, and by association, you make me strong.

I love your vulnerability.

I love that you are right here, right now, reading me, and understanding what I am trying to say, even when I can't so eloquently say it.

what if

2008-07-08T22:35:00.000-07:00

It hits me without warning sometimes.

I get this wave of anxiety that I can't control - sort of like sinking in quicksand - every few months or so. Just because.

This time, it was the pictures that did it.

Roxie came skipping home clutching old preschool pictures of Miss M that her teacher gave her. The teacher was presumably cleaning up, going through old files, when she found pictures of Miss M at the same preschool at about 4 1/2.

These photos, as I recall, were used in her Master's Thesis, something about Dramatic play and kids with social deficits. I believe that she thought it was a big deal that Miss M was feeding dolls and playing make-believe with the other kids. I think she thought that it was all due to her tireless and cheery attention and engagement of Miss M.

I didn't have the heart to tell her that Miss M has always enjoyed pretending and dramatic play.

That's not the part that got me, though. What got me was the inexplicable sadness I felt at these pictures of my wee girl, and all of the feelings that burbled up and stained me. Feelings of What If and that old chestnut, What Would Life Have Been Like if M Had Been Typical.

Any other time, I am completely logical and have a can-do spirit about me, about us, but this - this thing happens to me when my guard is lowered and I'm not looking. An old photo, a comment - and pow! I'm back to wondering and worrying and about a step away from sobbing in supply closets again. I can count on these attacks just about biannually - that is remarkable progress from my daily cataclysms of fear some time back.

This time, I thought about how markedly different Roxie is at the same preschool; how the whole experience is so easy, and well, smug. There are no hushed conversations in the hall, or notes to the teacher, or calls home. Just Roxie and her social perfection.

Now, before you get excited, I try mightily not to compare the two girls. Come on. There's no comparing the two. They are each magnificent in their own right. But these photos, with M tentatively making forays into social play, her serious expression?

I went there. I What Iffed.

There is a moment in Autism The Musical where one of the boys, Adam, is at school on the playground, and his aide says, "I wonder what he could have been without the Autism." I always bristle and shudder at that moment, shaking my head in shame for the woman.

Truth?

Sometimes I wonder too.

Not that I don't adore and love my daughter. I just wonder what it would have been like without the therapy and anxiety and special, special, special this and that.

What would it have been like to have two girls run onto the playground easily? To smile and wave and drink my coffee and read the Times? To complain about the constant traffic through the house and chauffeuring and telling girls to be quiet on sleepovers?

I do have most of that now. I do.

But I don't forget. The battle scars run deep and long and silvery, and I touch them often.

Before you get any ideas, What If is a very, very dangerous game. I don't recommend it, and I really don't like playing it.

But sometimes.

Sometimes I just go there.

And grieve.

Then I move on.

talk to the hand

2008-07-03T19:36:00.000-07:00

People, for the most part, mean well.

There are the occasional assholes that make asinine comments about my daughter, who speak before they think, and generally are subject to my wrath.

I'm sure you all have your stories about offensive comments. We could fill several posts with them.

I'm not talking about those.

I'm talking about people who are well-intentioned, but frankly, have no business in my business, and of that I mean my daughter's progress.

Unless you are a therapist, an immediate family member, or a teacher - and even then, it's iffy - please. We don't need your comments.

For example: Roxie's best friend has an eccentric family - Dad's a psychiatrist (say no more) and they have an annoying habit of commenting on Miss M. All the time. Unsolicited. I've never had a conversation about her condition with them. It's none of their business. The other day, they came to pick up their daughter. I opened the door. Miss M was standing next to me, eating a piece of bread. She smiled and said hello, then returned to her book. The psychiatrist-father gushed, "You know, I am so glad that you put Miss M in that school. She is doing so much better."

Better than what? What school? What do you even know about my daughter, you putz? I thought to myself as I stared through him, smiled tightly, and ushered his kid out the door. Miss M was unremarkable - she was standing and chewing. She was neither typical nor spectrummy. She was just being.

I am lucky enough to send Miss M to my school's summer program, and of course, I hand pick her teachers and programs. She took a speech and debate camp last week, and did very well. I got a call last night from my friend, her teacher. "Hey, Drama. I just wanted to say how impressed I was with Miss M, and how much credit I give you for putting her in the program. I can imagine how anxious it must make you. But Miss M got in there and did it, you know? Just keep doing what you're doing - giving her these opportunities - and she'll be fine."

I thanked him for the call and hung up.

First of all, she is fine. Second, I am well aware of what Miss M can do, and I select carefully and wisely. It's not some random stab in the dark. Frankly, we have lots of professional advice. We know where we're going with this thing.

I understand where people are coming from. They like her. They want to help. They want to be supportive. I wonder if my daughter were severely impaired - would people be so free with, uh, the comments? Is it because she is ever-so-slightly treading on the spectrum that people want to observe, measure, notate her progress for me? Why is everyone in such a hurry for her to develop and progress? Do they not think we're on top of it?

May I offer some unsolicited advice to those well-intentioned people?

Let her be.

Don't make unsolicited comments, or give her special privileges. Want to be supportive? Listen to her, talk to her, nod when she is stumbling over her words trying to explain something to you. Don't just "mmmhmmm" her and talk over her. Compliment her when it is merited. Ask her questions. Notice her nice handwriting, or her pretty wavy hair. But don't do anything that you wouldn't do for your own typical kid.

If you really want to be helpful, turn your attention to your own children, and make sure that they are kind and empathetic to kids who are a little different. Look inside yourself. What are you afraid of? What makes you so nervous that you have to measure a child that really has no relation to you?

Yesterday, my favorite student (who dabbles on the spectrum himself) drove home with us after camp. Miss M came out to the car, opened the door and sat down. My favorite student sighed and said, "Poor Miss M."

That? That poor Miss M? That bothers me the most. Don't feel sorry for my daughter. She has overcome many obstacles. She is happy, and has a good life. Now, I know that my student is empathetic because of his experience, and that most of these people mean well.

Don't make a meal of my daughter's "deficits". Just observe, accept, and move on. Get to know her. She doesn't need your pity.

Do me this favor:

Don't watch my pot. It's cooking along just fine.

ferris wheels and hope

2008-06-29T20:18:00.000-07:00

I love the summer time - the obvious respite from my hellacious teaching schedule, the ease of the girls' lives - it's all so civilized.

Being Californians, we go every-other-year- to Disneyland. I start to get a little nostalgic a few weeks before our trip. Let me back up a bit.

When Miss M was three, we were still in grief and denial, panic and fear. We were less than a year into the "identification" phase, and I still opted to call it "speech delay and sensory integration disorder." The word autism scared the shit out of me. I was still crying in the supply closet at work during passing time, I couldn't utter the word, much less read or discuss it. The "professionals" weren't much help either at this point; they either told me that nothing was wrong, or that my daughter should be in the local regional center.

Miss M was in regular preschool, with some language, and delayed social skills. She didn't "look" autistic to me, and "passed" for typical.

I can't tell you how sad and exhausting it was to pretend that she was "normal" and that it was all going to be over in a matter of months.

We took Miss M on her first trip to Disneyland, two besotted parents preening over our lone charge, spoiling her rotten.

Yet something didn't feel right. She enjoyed herself alright, and was well-behaved and happy on the trip. It was just that niggling feeling that things didn't permeate her; she was present yet distanced from most things we did.

One night, we were in line for a ferris wheel, our daughter silently standing next to us. I didn't notice that she wasn't talking to me or engaging me like the other kids around us did. What I did notice was an adorable little boy, about 6, who stared at me and pointed his finger silently at me. His father whispered something to him like, "Do you like the nice lady?" and the boy stared ahead at me.

As luck would have it, we ended up in the same car as the father and his boy. I am scared of heights, and I sat, eyes squeezed shut, as my husband and daughter enjoyed the ride. My husband teased me good-naturedly, and the kind father across from us said, "How hard this must be for you. I understand. My son has autism." My eyes flew open and I looked at the father. At this point, I lived in fear and disgust of the word. The father continued on to tell us how well his son was doing, how he was enjoying the trip, and how hard it was sometimes. Then he ended with "well...you know."

I got off of the ride shaking. Why would he tell us all that information, I whispered furiously at my husband, and why would he add that 'you know'? Was it so obvious? What were we not seeing? What were we refusing to see?

It got worse. I got back to the hotel and vomited. I couldn't sleep. I paced around the hotel parking lot (um, asylum anyone?) and cried. At seven the next morning, I called my-sister-the-children's-developmental-diagnostician a thousand miles away, and cried and screamed and worried. She talked me down, as she did so often in those days, reminding me that so much remains to be seen.

This breakdown took place one month before I ended up in the Emergency Room with anxiety attacks, Depression, and Suicidal Ideation.

I think of that Disneyland experience often, marveling that the father was somehow sent to me to wake me up. Painful as it was, I began to come to grips with things after that ride, and well, sort of unbelievably, I became pregnant with Roxie on that trip.

So. Disneyland. When we visit now, Miss M is remarkably well-regulated, and the easiest traveler of the group. I think of that father and his son, and hope that they are doing well. I wonder if that father knew what I was going through. I play his little speech over in his mind and search for clues. What was he really trying to tell me? I do believe his intention was comfort. Comfort and empathy.

I think sometimes that I would have liked to have the bloggy community back then; I was so alone and desperate and full of fear then. So I offer this to newly diagnosed parents, and to parents who cry in their cars, and who lie awake at night wondering and wishing.

Miss M auditioned for this prestigious group last week. And she was accepted into the company.

She completed Speech and Debate camp at my school last week. She received high marks for her excellent speech making abilities. One comment that made me laugh: "Try to make more eye contact."

So. My daughter lives most of the time undetected. Not that it matters anymore. What matters is that she is doing things that give her joy, that she is accepted and seen for who she is.

Yep. I think about that father a lot. I wonder if he thinks about us, and if he knew what he did for me that day. And I'll remind you, as I remind myself every single day:

So much remains to be seen.

please don't stop the music

2008-06-27T20:00:00.000-07:00

Before you judge me for what I am going to tell you, let me assure you that I am a good mother. I am watching Hairspray right now with my kids, with this cake in the oven for the Roxie's pre-school graduation tomorrow.

Okay.

I told you that I love being myself again, right?

Well.

My Gay and I got tickets to go here.

We'll be drinking this.

I'll be wearing her.

I think I'm one of these.

I can't stop the music.

Do you blame me?

autism takes a holiday

2008-06-25T20:54:00.001-07:00

I'm back.

I've been home from Paris for a week or so, flat out exhausted and rife with thoughts, thoughts and more thoughts about my trip, my family, and well, life at 42.

I can tell you that my trip was unbelievable - every day an adventure - theatre and sites, arts, and fantastic, fine food and champagne. It was the hedonistic trip of a lifetime. Every day was centered on my pleasure, my delight, and my senses. Upon awakening, I took a long bubble bath in my granite bathroom with gabled roof, cheerily waving to the neighbors across the street. My Gay and I set out for the day, fortified with rich espresso and fruit, and perhaps a chewy, buttery croissant if we felt like it. We eschewed maps, and opted to blend in like natives, which, blissfully, we were able to accomplish more often than not.

I missed my children terribly. I will let you in on one secret though:

It was nice to be me again.

I thought this over and over, as we laughed and talked nonstop, rested and read, walked and sang.

I didn't have the pressure of 100 students, or a the neediness of a 5 year old...or a daughter with autism.

Yes. I'm saying it.

I realized how hard life has been for the last several years.

I realized, as I had the time to hear myself, how much of my day is spent thinking ahead, planning, worrying, preparing. I advocate, fight, and muscle my way through most days.

I'm not pitying myself, or making a political statement. I'm saying my truth, and that is that autism is hard work. It's hard to predict the minutiae of life - how a certain sound or light, or even clothing tag can set your child off. It's endless worry. It's constant engagement. It's a cheery, animated voice and face when you are too tired to function, yet do it anyway so that you can properly model and elicit response. It's repeating yourself. It's working out in the middle of the night, fending off anger and anxiety so that you don't take it out on the kids. It's enduring judgment and stupid comments and quizzical looks. It's being a rock in school meetings, when all you really want to do is be held and rocked like a baby.

It is fucking hard work.

I spoke to Miss M from the Louvre, on a red Blackberry, and was stunned by how conversant and adult she was.

When I hung up, I had many thoughts.

She sounded better than I'd remembered.

I thought about how hard we'd all worked to get her there.

I thought about the last nine years, and how, for 7 of those years, I have been completely, obsessively concerned with my daughter's progress and well-being.

I took a breath and we walked along the Seine.

In spite of the Post-Traumatic Stress, as my friend Michelle O'Neil reminds me, I still function. I still laugh. I still drink too much champagne. I can still appreciate a sunset or piece of artwork. I can still discuss theatre with the best of them, and I surely, surely, can outperform most young ingenues half my age.

I'm still here. I'm still standing.

I came home to find that Miss M won an award for Creative Writing, that she now has a real-honest-to-goodness-boyfriend (hugging and whispering and wanting more and more playdates!) and that Roxie would like to pierce her ears and join the SF Ballet.

I've done okay. My plants still flourish in my absence. The roots are strong and hearty.

I have adjusted in the past week, missing cafe society and Galuoise cigarettes and books, and, well, me. In its place is a different permutation of me - just as valuable, just as dynamic, but with a richer context and meaning.

Remember E.T. and Miss M's awakening to empathy? She was listening to Phantom of the Opera in the car the other day (a gift from Her Majesty's Theatre in London) and she sang along, perfectly, in her sweet, strong soprano. She came to this song:

No more talk
of darkness,
Forget these
wide-eyed fears.
I'm here,
nothing can harm you -
my words will
warm and calm you.
Let me be
your freedom,
let daylight
dry -your tears.
I'm here,
with you, beside you,
to guard you
and to guide you . . .

Miss M suddenly erupted into tears. She sang through, wiping tears away as she finished the song.

Her sister and I glanced at each other, and I turned off the stereo. We drove in silence awhile.

Roxie broke the silence. "Why are you crying?" her eyes wide and incredulous.

Miss M stammered a bit. "It's well, I --- it's so touching. They love each other, and, well, they feel - they feel - they -"

She didn't have the words. For once.

She had the feeling.

She understood the feelings.

Perhaps I haven't finished the life I thought I'd have.

But I've done a damned good job with the one I have.

postcards from the marais

2008-06-12T11:31:00.000-07:00

how i miss you all, mon amie!

here i sit, pecking at the french keyboard in the hotel lobby whilst the front desk receptionist glares daggers at the ugly americain.

forgive the lower caps and the lack of punctuation, will you? the french keyboard is bass ackwards, i am on my fifth coupe du champagne, and my gay is not stopping the flow of the bubbly.

some questions for you:

why do i drink champagne and eat buerre and olives and croque madam nonstop and still lose weight?

why is it that walking ten miles a day in paris seems like a hop and a skip?

why do the english have such bad teeth?

why are the english so exclusive, while the french gays act as if they've been waiting their whole lives for us to arrive and party?

why does absence give me so much more perspective on my children?

why do i actively miss my bloggy friends as if they are my family? i drink my wine and envision so many of you laughing beside me.

there is an unbearable amount of beauty here. my gay and i spend our time together, then not - so as we both have our space and time to glitter and be gay, as it were.

a handsome frenchman bought me coffee today and sat with me, asking if i'd like to go out in the nuit. number one, i tried not to blush and look at my shoes. number two, my mind nearly burst trying to speak french, so i resorted to spanish, which patrick found charmant. (mon dieu!) last, i missed my husband terribly at that moment. of course, i politely declined and made my way back to my gay, who was waiting for me at a throbbing cafe teeming with france's finest homosexuals.

know what?

i walked on meringues back to my friend, with freshly applied red lipstique.

it was nice to be seen. to be noticed.

perspective.

it's does a body good.

summer lovin'

2008-06-04T03:47:00.000-07:00

It is 3:45 am, and here I sit, anxiously typing away hours before my last batch of finals, the last hurried input of grades and comments and final this and final that.

I leave for London (and Paris) on Thursday morning.

The stress of preparation is daunting, as I prepare to leave the girls in the capable hands of Grimpy and Drama Daddy. They're good. Damned good caregivers.

Thoughts nag at me a little:

Will Drama Daddy check Miss M's hair in the morning before school? (She gets a little creative)

Who will hand wash Roxie's tiny, delicate, pink ballet tights?

I've loaded the fridge with mostly nutritious food (and a few treats).

Done the laundry.

What is there left to do?

How does one decompress from the hurried rush-rush of the last nine months?

I suspect it will happen on the THIRTEEN hour plane ride.

Thirteen hours on a plane. I've got a book, Benadryl and My Gay. And that always means a Bloody Mary or two, and many laughs.

Summer.

Here's what I look forward to:

Huge, blockbuster, brainless movies to see in the afternoon, with of course, popcorn and Diet Coke;

The smell of suntan lotion on my sweaty kids at the end of the day;

Roxie's little chipped painted toenails peeking out of her flip-flops;

Singing lots of songs in the car;

Nothing for Miss M to do but relax and feel good;

No stockings or skirts or slacks - just sandals and capris;

Books, books, and more books.

So here I lean forward, imaginary Mojito in hand, crossing my tanned, toned legs in my fabulous muslin caftan and ask:

What do you love about summer, Darling? What do you wait for all year long?

hosed

2008-06-01T09:31:00.000-07:00

I was watching this clip while drinking my coffee this morning. Miss M wandered over to my computer, leaned on me. "Who's the kid?" she asked. I explained about Alex Barton, Ms. Portillo, and the Survivor/Belgen-Bersen/Kindergarten program that he attended and was subsequently squeezed out of.

She watched video clip. She looked at the captions on the screen. Being the sensitive type that she is, I thought that she would shed tears for Alex, or get on her soapbox about the injustices of the world.

"Why do they call it 'special needs'?" she asked.

I explained that some kids need extra support. I explained that schools need extra help in order to help the kids that need it.

"Huh," she said slowly, "why do they call it special? If kids need it, they need it. It's like glasses."

She went into the kitchen to eat a cold pancake. She came back in, munching it taco-style. I was still staring dumbly at the screen.

"This is what I think. Mom. You know how Andrew in my class has Dolores? How she helps him act appropriately, and calm down, and play on the yard. Is that 'special'?"

I answered in the affirmative.

"That is so lame. There's nothing special about it. It's called learning. It's called school. Duh."

I sipped my coffee some more.

She came back again, shaking her pancake taco at me.

"And that guy? At the end, he said that maybe they should teach the kids about understanding differences? This is what I have to say: Yeaaaah. Maybe they should."

She started up the stairs. She turned. "Last thing, Mom. And then I will not talk about this anymore. But that Alex kid?"

She shook her pancake at me again. She forgot to close her mouth when chewing. We've worked so hard on that.

"That poor Alex kid. He sure got hosed."

Indeed.

personal best

2008-05-27T20:42:00.001-07:00

I have this new thing.

As I have forever been controlling my weight, I have always exercised. In the last few weeks, I have taken advantage of the new, state-of-the-art fitness center that my work has provided for faculty and students.

I lingered over the beautiful treadmills, huge behemoths with TV screens and iPod cubbies.

I'm not a runner. I'm a cardio fan, sure, but more of an aerobics class/kickboxing/elliptical sort of girl.

The stress and strain of running has long deterred me.

One day, when my considerable quadriceps could not take another day of ellipticalling, I approached the mystery 'mill.

I started walking. Just 15 minute miles, mind you, watching the Ellen show on silent, bopping along to my thumping techno music.

I decided to up the speed a bit.

I started walking two minutes, then running two. Then I switched off, for a full forty minutes.

I stretched and left, blithely pleased with my attempt at something new.

The next day I returned, jumped on the elliptical. Once on, I kept eyeing the treadmill.

After ten minutes, I jumped off, and did my walk/run routine again. This time, I went three/three, increasing the speed to eleven minute miles.

Over the next few days, I went four/four, ten minute miles.

In one short week, I was running 8.5 minute miles straight through, for a full half hour. Sometimes, I'd even top off with an extra 15 minutes on the elliptical.

The appeal? Perhaps it was the jarring motion, the pounding away of stress, the feeling of freedom and endorphins flying, and progress.

The more I practiced, the better I got. It was enticingly heady, this draw to my big, chrome lover.

I went everyday and marked my progress. I was shocked, frankly, that I was able to better my time and distance everyday.

I wouldn't say I got cocky, but I did get a little self-important.

I'd say to My Gay, "Oh, I can't talk now, I have to go run," as I tossed my workout towel over my shoulder and jogged over to the other campus.

I felt like I'd never go back to those miserable 15-minute walk/runs again.

Then one day, I slogged into the gym. I didn't jauntily jog, as I usually do. I had my period, and I was bloated. Cranky. Distracted.

I started on my run, but after three minutes, I had to walk again. I walked miserably for the next ten minutes, the shame burning my cheeks.

I started to look around the gym. I usually don't do this, as I am usually focused on my exercise. I noted the tall, thin faculty members who effortlessly exercised, their low-impact routines keeping their bodies lithe and lean, while I growled to myself that I must exercise like a drudge just to keep my ass at bay.

A junior teacher got on the machine next to me. She started to run. She increased her speed gradually, effortless sprinting with nary a jiggle.

I felt horns grow on my head.

I increased my speed.

There I ran, next to a twenty-four year old, matching her step for step, because, well, I could.

Not because I wanted to.

I still looked around the gym that day, measuring. Comparing.

I ended up with a stitch in my side and wet exercise clothes. My legs cramped in bed that night.

On the scale the next day, nothing had changed.

I thought about that. Same result. All pain, no gain.

I kicked it around for awhile.

On my way to pick up Miss M from school, I had my usual, once-a-day moment of anxiety about her development. Will she be able to make it in high school? Is she doing okay compared to other girls her age? What exactly is her delay at this point?

It hit me at exactly Geary and Second Avenue.

It was the gym scene.

I was getting ahead of my time and distance. I was distracted, and not focused on the journey at hand.

I was trying to win races, and not focused on the marathon ahead of me.

I was looking at the others in the gym.

A simple, perfect metaphor.

Miss M is toiling away, step for step building on her skills daily. I doubt that she compares herself to others. She just keeps slowly stepping, clocking her miles at an even, steady rate. She is not maniacally trying to best herself each day. She just does the best she can. She is on her own journey. Not in a race.

Today I ran, music blaring, exultant, joyous. I threw my towel over the red blinking digital numbers, and stopped when I was tired.

I peeked at the numbers once.

But only once.

I'm doing fine.

She's doing fine.

We're in no hurry.

phone home

2008-05-24T20:53:00.000-07:00

Miss M is thriving at her New School. Truly. I could go on all day about her improved concentration, self-esteem, general happiness, and most importantly, her desire and ability to make new friends.

We were watching E.T. the other night, and the girls were really, really enjoying the movie. If you have not watched the movie in awhile, do so. I am still impressed by Spielberg's brilliant schmaltz - manipulative, but artfully, touchingly done.

We came to the part where Elliot and E.T. start to experience symbiosis - they feel each other's emotions - and the girls became fascinated. I have always questioned the girls during films - What do you think she's feeling? - What does her face say there? - mostly, in part to help Miss M. She always provides the correct answer, though I always wonder if her heart truly "gets" the emotion of movies.

They had a great many questions about Elliot and E.T.'s relationship. Miss M loftily told her sister that because they are friends, they feel the same things. "It's called empathy," she said, rolling her eyes a bit.

We came to the part where E.T. goes back to the space ship. Elliott is distraught over his friend leaving, and E.T. tells him I'll be right here, and touches his grizzled little finger to the boy's third eye.

Miss M was undone. She wept big, fat, hot tears. She rewound the scene.

She held her heart.

We asked her what was wrong.

She responded that her heart hurt. I have all these emotions she said, as if we'd dunked her in ice water.

We tucked her in bed a short while later. She started crying again. I asked her what was causing so many feelings.

I know what it's like to be from somewhere else and feel lonely. And now I know what it's like to have friends. Real friends.

I would be terribly sad if they ever went away again.

I'm checking the DSM-IV again.

I think we just lost another piece of criteria.

prom king and queen

2008-05-20T20:41:00.001-07:00

Today went like this:

It is passing time at our prep school. The phone rings.

He: What are you wearing right now. (Fake heavy breathing)

She: Jay-sus, will this day never end. Lunch?

He: I dunno, but these kids just keep coming in. Bell after bell. They just keep showing up. Like cockroaches.

She: Two more weeks.

He: Gun to your head - Radar from M*A*S*H or Captain Stubing from Love Boat?

She: As if. Stubing. Total stud.

He: Hair-puller. Totally.

She: I've got one. Let's play Who's Gayer.

He: Go.

She: You have a Clarisonic in your shower.

He: You listened to Barbara Streisand Live on the way to school today.

She: No. My kids listened to Barbara Streisand Live on the way to school today.

He: They know the words?

She: HELL yes.

He: That's it. You win. You're Gayer than Christmas.

She: You eat Lean Cuisine and lotion your feet while watching Dancing With the Stars.

He: What's your point?

A pause. She sighs.

She: Okay. I'm a raving homosexual.

Bell rings.

He: I'll see you at lunch. I'll be the one with the big package.

She: Don't be late, biyatch.

In the lunchroom, My Gay and I breeze in, laughing nonstop, and playing games like Gun to Your Head and Name That Musical and our new favorite, 5 Seconds, in which we have that much time to look around the room to find our next theoretical bed partner.

We eat off of each others plates, and sometimes, My Gay lovingly tucks my hair behind my ear, absentmindedly, as we talk.

He gets up to get me more iced tea.

The other female teachers stare.

The Religion Teacher Who is Forty and Feels Her Clock Ticking says, "He is so darling with you."

The Married English Teacher Who is Tired of Her Husband says, "I want one of those," as she forks salad into her mouth.

The Repressed Male Math Teacher chimes in, "I want one of those, too," as he surreptitiously checks out My Gay's hind quarters.

My Gay comes back, and we talk in shorthand, eclipsing the comprehension of the others at the table. We are blithe and glib, and reference songs and movies and shows at lightning speed.

The Yearbook Moderator stops by our table. "Here you two go," he says, taking out the photo envelope. "You two lovebirds at the prom," he says, chuckling and shaking his head. I am sitting on My Gay's knee, our heads connected, smiling for all the world as if we are two teenagers in love. We laugh until iced tea comes out of my nose.

We are immediately besieged for requests, but we have to be selective. The receptionist gets a copy, and so does the dance teacher. The rest, we are sending to My Gay's mother and framing for our respective offices. When you're the Prom King and Queen, you have to be picky.

The bell rings again, and we stand, ready for the next assault of classes.

My Gay pushes in my chair, as he puts his hand on the small of my not-small back and says, "I'll walk you up, dear."

I can hear the other teachers sigh with envy. The Librarian Who Has Pictures of Her Cats on Her Desk says, "I'll have what they're having," and I hear the table softly chuckle.

I have had many lovers. I've had many Gays. Some even blended into each other.

But This Gay? In my middle-age, with two children, a career and home, a husband? This Gay means the most to me. He provides a witty respite, a colorful life outside of my fabulous-but-stressful grownup life with bills, assessments, therapies, and evaluations.

This is a light, fun affair with no ties, no sex, and no guilt.

Did I mention that in two short weeks, we are going here? And here?

Jealous yet?

the exterminator

2008-05-14T21:31:00.000-07:00

So I got one of these for Mother's Day. I'm not one of those parents who videotapes things - not because I don't want to, but because I'm technologically challenged.

My husband found this one-button-chimp-simple camera for me in pink.

Need I say more?

So the chicks and I were casually fooling around after dinner tonight, and they came up with a little improvised movie.

I'm so charmed, I'm sharing it with you.

Of note:
Roxie's pretzel "cigars" that were her idea;

Miss M's unabashed joy and hamminess;

If you listen closely enough, you can hear Roxie yelling "Mom, look at me!" every time the camera is on her sister;

There is a second where you see me make a Hitchcockian cameo - all mascara rings and crazy hair;

Roxie's drawings and notes stuck all over our walls that make our house look like a set from A Beautiful Mind.

The plot is paper-thin. We start with a ghost. The housewife is concerned that it is poisoning her mushrooms, she calls an exterminator, and well, the ghost is busted.

I daresay it's been done before.

The film is a primitive effort. But damn, they're cute.

If I start to get annoying with these things, let me know.

And now...Click here for:

The Exterminator

Sorry, I can't embed. I'll get to it. Just making this was hard enough.

all kinds of moms

2008-05-10T21:10:00.000-07:00

Sometimes I feel like a fraud.

Like this morning. I was dead tired, trying to sleep after getting home at 3 am, fresh from chaperoning the prom. (Word to the wise, don't EVER chaperone the prom. There are better ways to spend your time.) The girls woke me up at 6:15 in the morning, and well, maybe I wasn't the most patient or loving mother.

I asked them to please let me sleep.

Go downstairs and put on a cartoon, I growled.

Here I am, all blogging up in your face, talking about how great my kids are, my students are - then I'm a real jerk, exhausted and a little hungover, shooing my children away as they innocently ask me what I'd like for Mother's Day breakfast.

I worry about being like my mother sometimes. My mother was - and is - tough and hard. She is impatient, and pretty narcissistic. She did not protect me as she should have in my adolescence, and, as a result, I had many, many hard years.

I really don't wish to go into more detail here, but suffice to say, she made many, many mistakes.

Mistakes that she doesn't even realize most of the time.

The few people who know my story are often outraged at my mother. Sometimes, she says some truly thoughtless things to me.

I can't resent her. I can't be angry at her. I can only accept her for who she is. Being angry or hurt would only waste my time.

Sometimes I look at the extra cushioning on my hips and wonder that perhaps, if I "forgave" my mother, I could "release" whatever it is I am holding. Maybe it's my mother. Or maybe it's too many carbs. I can't be sure.

What I do know is that she came from an abusive and hard background. That she did her best to educate and better herself and her kids. That she did what she could to survive and thrive, and did what she thought was the best choice at the time.

She did not maliciously try to hurt me or my family.

There's nothing to forgive.

Sometimes, Friends, I get a little judgy about other mothers. For instance, Roxie's best friend has a mother that I call Dump and Run. She asks me to pick up her daughter, and then leaves her child with me for the next 7 hours. She often throws her kid on me for the whole of a Saturday, while she naps.

And I'll be frank, I get a little judgy about those neurotypical moms, who have it seemingly easy, with their Land's End canvas totes, and Subaru Outbacks, waving off their kids to effortless playdates.

The truth is, I don't know their private pain. Perhaps Dump and Run suffers from Depression, and needs to get her daughter out of the house for her own self-preservation. As for the NT Moms - I have no idea what their stories are at all. None. So I really can't judge, can I?

There are all kinds of Moms. Good ones. Ones that are trying their best, in spite of the circumstances. Single moms. Working moms. Frustrated, tired, impatient moms. Permissive moms. I'm a teacher. I see 'em all.

I think, as I recede into my advancing years, that we are all doing our best. Just hanging on, figuring it out, and yes, sometimes snapping on an early Saturday morning.

I used to feel sorry for my kids - that they were stuck with a mom who didn't quite understand their challenges, who worked and schlepped them around alot, who hates cooking dinner.

But you know?

Kids adapt. They love what they have. They love what they know, and if the intent is good - doesn't it all sort of work itself out in the end? This is not to say that kids should live with any sort of abuse. Of course not. But motherhood takes all kinds.

As for my own mother?

I'll be damned.

Most of what I remember is the good stuff, like how she drove me to Ballet every day, or how she bought me a penny candy on Fridays after school. How she put together the best Christmas stockings ever.

I'm hoping that my kids remember we dance Hip Hop, that we bake cookies, and that I did everything I could to teach them to be themselves. I'm hoping that they forget the snappy Saturday morning.

Happy Mother's Day to you, my good friends, who are in it for the long haul; who hang tough at the IEP and later cry in each other's arms; who cheer at shoe-tying, rope-jumping and friend-making. I salute you, my comrades-in-arms, who, simply are doing your best with what you've got.

What we've got is enough sometimes.

Happy Mother's Day.