Wednesday, December 23, 2009

power

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.

28 comments:

kristenspina said...

I've missed you. And your magnificent daughter. All of it, every day, yes, it can be so hard--heartbreaking hard--but so good too, so very very good too.

Merry Christmas, my friend.

JoyMama said...

Thank you for honoring Christmas. And honoring your amazing daughter. And sharing it all and making me cry this morning!
:-)

deb said...

I don't think there's anything wrong with your daughter, I think more of us need to be as kind and thoughtful and insightful as she is.

You made me cry this morning, as the mum of a handicapped daughter it's so nice to know that there are people in the world who will go out of their way to be kind to her.

Merry Christmas.

jess wilson said...

This post is a treasure trove, but you want to know what struck me most? (Say yes, cause i'll tell you one way or the other) ..

This ..

It's...it's alot to be..." she inhaled," normal."

Because all I could think was 'and thank God she's so very much more. Miss M PASSED normal light years ago.'

She is a gift, Drama .. just like her mama.

I love you both with all my heart.

Merry Christmas

Niksmom said...

Who knew I could shed so damn many tears on Christmas Eve? Miss M, she's so far beyond "normal"...she's extraordinary. In the most beautiful ways imaginable. And so are you, my friend. So are you.

Merry, merry Christmas to you, my beloved friend. And your glorious family.

Anonymous said...

What a beautiful blog. Your daughter sounds like a wonderful, loving, giving person. My son has Down Syndrome and he is the best thing I have in my life. So thanks for making me cry on Christmas Eve - not the kind of cry that rips you apart inside - but the one that builds you up and makes you thankful for the blessings in your life. And yes there are the tough times, the sad times, the very angry times, but those all fade away when I see my son smile back at me.

Ange said...

Beautiful.

Squid said...

The world is a better place with your daughter in it, no doubt. Thank you for sharing her story with us. I will be reading it with my own older daughter, for whom yours is such a good role model.

No doubt you made Kristen cry again. :)

Julie Jordan Scott said...

I am speechless. I look over at Samuel, happily shaking an instrument on the couch, and know the pain of never "being normal"... though in our family we often say, "Who wants to be normal, anyway?"

Elise asd2mom.spaces.live.com said...

Beautiful post. We have special children who teach us the important things in life. As hard as it can be sometimes, I think we can be so lucky as well.

BTW good for her that she spoke up and did not go back. I think anyone should not have to be in a place they feel unwelcome. It is not a matter of quiting. I see it as a matter of standing up for oneself and saying enough is enough.

goodfountain said...

Such a beautiful post written by a beautiful person about her beautiful daughter.

Merry Christmas, Drama.

Erin said...

This is beautiful. Thank you for sharing it.

Ilka Zapata said...

You made me cry. I know how it feels. I've been there. It's like you were talking about my little girl. Your kid is very brave. I am so happy you supported her through that. Thank God because you have a beautiful little girl, in and out. I am mother of an Aspie girl. And I am very proud of it. I also have a beautiful girl in and out. She is a blessing. She makes me a better person, too.

ghkcole said...

I want your girl to be the star of a show my kids can watch. I want them to have her as a hero the way I do instead of Hannah frickin Montana. Your girl knows how to live. I love her. We gotta get her a show. I want my kids to beg for dollars to give away instead of nail polish and light sabers! (not that I don't accep them as is!)

fullsoulahead.com said...

Tears flowing.

I love your girl and want to defend her as if she were mine. "Our kids" are just too damn good for this world.

And they are changing us. And changing the world. And those who don't get it, don't have the priveledge of "getting it."

Love to you. Give Ms. M. big hugs from us. Tell her we love her. And we love you too Drama. We love you big.

*m* said...

Heart and eyes full, reading this.

Power-full, indeed.

Wishing you continued pride and joy in this amazing young lady, and a very merry Christmas.

Fairlington Blade said...

Thank you for sharing that. I'm a father of twin boys, one on the spectrum and the second--well, we're not sure. He has some social and communication delays, but is in a great program.

Anyway... I had a similar experience to yours at the grocery store. The janitorial services where i work are provided through Melwood, which operates support programs to help special needs adults have independent lives. The janitor in my building wanted to introduce himself and talk a bit. His name is Charles. Even though I was on my way out and was going to be late, I am glad I took the time to talk with Charles. He is my co-worker and deserving of my time and respect.

So, thank you on behalf of Charles. And Primo and Secondo. And their father.

BB

Christa said...

This one really left me speechless, so I had to wait a day before I commented. Like everyone else, I was so moved by how you both handled this, how brave, and how loving you are.

Ms. M has learned self-advocacy, which seems to be the most valuable skill any of us can learn. She has an amazing degree of self-awareness: more than your average tween, I would guess.

She doesn't have to sing at Davies to shine her light.

But you know that already.

Much love at Christmas.

Penny said...

Drama,
Thank you for posting this. Thank you for being a beautiful mother who truly understands her child. Thank you for letting her be herself. That's all any one of us hope to be huh, truly ourselves? Some people spend lifetimes not even getting there and look at Miss M. already herself in so many ways, already there.

I am the mom of a 13 year old girl with autism. She struggles with this world's definition of 'normal.' Struggles with her place in loving Sesame Street and being 13. She knows she is different. There is such hurt and glory that can happen at the same time, from others, from our punishing selves. It's so hard sometimes.

Thank you for sharing about Miss M. It hit home.
Blessings at the holidays,
Penny

Dani G said...

My daughter is almost 5. I hate that number! We are working hard. Harder than I'd ever thought I'd have to work. She, too is making me a better person.
Thank you so much for sharing!! Even though kids on the spectrum are like snowflakes- no two are the same- we moms need to hear about each other's experiences. After all, we're all in this together. xxx

Dani G
imjustthatway.blogspot.com

Anonymous said...

I often try to find the words that simplify the complicated world of parenting a child with autism. You did it for me-I am better to others because of my son, and having "autism goggles". Thank you!

pixiemama said...

You are the best possible mother for Miss M, and she knows it. You're right - not every place is for "us." It takes strong, brave, wise parents and children to acknowledge that and move on. Just remember, when it reverberates, when it comes back to haunt, that Miss M is here to live a good and happy life. She belongs in a place where she can move and sing, take breaks and play the tambourine. She belongs where people do good for goods' sake. Not every place is like that, and the places that aren't? They aren't good enough for her, no matter how much they cost.

xo

Brenda said...

Wow. Once again, I'm blown away. You are a terrific mom and M is amazing. I am just so awestruck that she recognizes a place where she does not feel happy and wants to move to a place where she does feel happy. And you are so right about the days when all we see are the differences (those days are the worst) and the days when we see the shiny gloriousness. Get the shades on 'cause your girl has it in buckets. Merry Christmas!

Carrie Wilson Link said...

And THAT'S why I love you.

Yes, these kids are here to teach. You have learned. No accidents.

Can't talk now - off to send this to my peeps.

love.

Osh said...

Who knew I had any tears left in me?

I love you...love to Miss M...

(your husband is like mine, we had the same discussion when Evan had to take a break from school before the IEP was "fixed"...running away, he called it)

Have a wonderful 2010, my dear friend.

gretchen said...

My take-away from this post is that word: power. I like the way you reminded our Miss M that she is powerful. She has the power to choose what she wants to do. Such an important thing to ingrain in girls! But important for boys too.

I know that Henry has made me and my husband better people. No question. If not for Henry I would not have stopped to find out the name of the young man who holds the elementary school door every morning. I would have looked right past him. I hate that about myself.

I'm sorry the concert didn't happen. I hope Miss M remains proud that she was accepted, and even more proud that she decided not to continue. XXXOOO

Marla said...

"She's autistic. Our rules are different."
Totally true. This sounds like my life with M. I know this struggle and it happens again and again in so many different ways.

Susan's 365 said...

WOW...just WOW! You are an amazing mom and Ms. M is an amazing girl.

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