Musings

In Which We Attend 8th-Grade Promotion
Last night lovely lady, 13, went through her 8th grade promotion. My baby girl is in high school.

Excuse me while I catch my breath.

I don't know how this happened. Not the high school thing, even though I'm a little short of breath over it. The hair and the shoes and the black eyeliner. I'm not sure how I became the mom of that kid. The girls I saw in school who were a little rebellious and different. The girls I'd see outside the high school when my lovely lady was little, and I'd think, "No way, no how. What are their parents thinking? Maybe their parents don't really care much about them."

Heh. Life has a way of handing us our assumptions, our "not-my-kid," our "No way, No how" on a silver platter, eh?

There she is in all her pink-haired, wearing black, life is-dark, skull t-shirts, Converse-wearing glory. I paid for the hair and helped her lace up her boots. And I adore her to the ends of the earth.

I've learned from this challenging young lady to pick my battles, and more importantly that there don't need to be battles. That it's important to find ways to say "Yes." To honor her idea of who she is instead of my ideas about who she should be, no matter how cute I think she'd look in that baby pink polo. That a daughter with the confidence to be a little different is more important than what other people think.

In Which I am Shocked, or A Lesson in Appropriate Clothing for Young Teens

So, the other reason I'm not the least bit bothered by the pink hair and etc. I was shocked by what the other girls were allowed to wear to the graduation. I thought I was pushing the envelope by allowing my lovely daughter an above-the-knee dress that shows a hint of cleavage. That sparkly pink dress is conservative compared to the outfits of many of the other girls. The little black dress with a plunging neckline worn with three-inch heels was a popular choice. There were a couple girls whose dresses made me want to run out with a robe to cover them. Excuse me folks, but they're fourteen. Perhaps we could leave a little to the imagination, at least until they're in their twenties and old enough to decide for themselves if they want to dress like....well, they're only fourteen, if that, so I'll be kind.

Let's just say that the pink hair and Converse is looking beautiful to me right now.

In Which My Daughter Really Does Need Me, or Adventures in Autism, or Ways to Connect

I've shared my struggles with my lovely lady and the ways in which her disability impacts our lives. Take the surliness and emotional turmoil of a typical hormonal teen girl, throw in a good dash of My Mom is the Most Embarrassing and Unreasonable Person on the Planet, and remove the social filter, and I've got quite a parenting challenge on my hands.

Over the past spring we've had lots of grumping and fussing and "Leave me alone." A deep need for some peace and solitude after a long day of social interactions. It's heartwrenching when a young person so embedded in my heart doesn't want to have much to do with me and makes it crystal clear. I was genuinely concerned for our relationship. Until the morning the phone rang, around noon, and it was my precious lovely lady. "Mom, I was thinking about my trip to Arizona. Do you think I need a new swimsuit?" I ventured that I thought the one she had was probably just fine. "Oh. Okay. Thanks, Mom. Bye."

I realized that increasingly over the past few months the phone rings midday, and it's my lovely lady. She'll ask me a question or share a pressing thought or ask advice over a little concern, then off she goes about her day. All issues that could very well wait until she gets off the bus.

A quick connection. A "Mom, I need you." A way to reach out and preserve our relationship and still get the quiet she needs at the end of the school day.

And so I can be patient. That little phone call was all I needed to refresh my spirit and renew my faith that deep down in there, my baby still needs her momma. Pink hair and all.

Coming Soon to a Theater Near You

From the Hult Center website:

Soaring in the Soreng

Location: Soreng Theater

Presented by Bridgeway House

At the Hult Center, hopes and dreams take flight as children and young adults affected by autism perform in this original showcase of many talents. Crafted by the performers, Soaring in the Soreng offers a limitless horizon of perspectives on having wings and taking flight.
Each uniquely talented performer showcases an ability to rise above the personal and societal obstacles with which they are presented each day. Bridgeway House offers each performer support in finding their own way of soaring as they demonstrate that 'the sky's the limit!'

Sat, April 25, 2009 - 1:00pm

Lovely lady will participate in this Bridgeway House Theater event. Read about her previous performances here: Theater

Treasures

This morning I was mentally meandering over my cup of coffee. Random rememberings. I started thinking of a little boy I used to know.

When I was a single mom, I worked part-time as an autism assistant for preschool children. I worked with this little boy four mornings a week, sitting at a tiny table in a tiny kid chair, teaching him to count, to sequence things from smallest to largest, teaching him colors and shapes, teaching him to play. He was adorable. Big shining brown eyes. He didn't make eye contact, just glanced quickly at my face now and again. Beautiful smile when I cheered for him. He didn't like to be hugged, or even patted on the back, but he loved to be praised and given stickers for work well-done.

One day we'd finished a successful session, lots of cheers and high fives and "Way to Go!" My young friend went to the toy shelf, right behind me, so he had to pass by my tiny chair. He stopped. Leaned against me, back to back, just for a moment. Then he was gone.

Oh. My heart just stopped.

It's one thing to be loved by a child who adores the world. Those brilliant shining children who greet everyone with a smile, who come flying toward you with a hug. Truly precious to be loved so openly. But for this child, a child who could not speak "I love you," a child for whom body contact was a daily challenge...he was finding his way to shout "I love you!" and wrap his arms around me.

That was ten years ago. I don't remember the shoes I bought that year, or the clothes in my closet, or how much money I had in the bank. But when I close my eyes I can very nearly step back in time to that moment. I can feel as clearly as if I were there again, that little boy leaning for just a moment then gone.

Down the rabbit hole

Wonderland was Wonderful.

Anything can happen, and often does, we were reminded before the performance. As I sat there in the audience, I knew that the last dress rehearsal, less than a week ago, was reportedly the very first rehearsal in which no one had a meltdown. The unique nature of the cast of this play means that we will have to be comfortable rolling with the flow.

The play went off without a hitch. The actors remembered most of their lines, the costumes were wonderfully creative, the story was charming. Lovely lady was glowing afterward. I was...am...so proud of her. Proud of all of the actors, and of their teachers-facilitators-directors-helpers. The production was a challenging one, expectations were set pretty high, and they outshone themselves once again.

Not only did the troupe perform beautifully, they performed beautifully the very first time they'd performed the play in front of an audience, the first time ever on a stage for some. Imagine for a moment that you are a young person with a disability that can make crowds seem overwhelming, or sounds seem too loud, or lights too bright. New situations or people can be frightening. Imagine trying to perform in front of a crowd of people, rustling and whispering and shifting and coughing and even crying. Or imagine just trying to sit in a crowd in a strange place in the dark. Many of the audience members were on the autism spectrum too. One child in the audience had a crying meltdown. Another young person wanted to go home, wanted to leave now.

Here's where the cast really shone: They kept right on going. Not a hiccup. Like actors. Not "actors with autism". Actors on stage, rising to the challenge of performing in front of a live audience.

It's important to involve our children with disabilities in projects that allow them to shine and to stretch and to achieve. Well, all of our children, really, no matter what their abilities. Not just for their sakes, but for our own. Projects like this one serve as a reminder: When we set the bar high for our children, no matter what their needs, and we provide them with the support they need to achieve their goals, they can be successful. That's what being a parent, or a teacher, or a facilitator, or a friend is all about.

The highlight for me: Seeing my lovely White Rabbit's face as she came out of the theater.

She tried theater camp two years ago. She'd performed in her school play and wanted to try more. The camp was too much for her. The instructors were very kind, but their focus was teaching children performance, and the activity and noise and pace were overwhelming for lovely lady. She had a hard time learning the dance moves. She didn't understand the directions for some of the acting exercises. She didn't get the part she wanted. And the final blow, she hated the t-shirt she had to wear for the final performance-- she felt self-conscious and it showed.

When we found out last year that Bridgeway House was starting a theater group, she jumped at the chance. (You can read about last year's performance here.) And she loved every minute.

So, Wonderland went off without a hitch, and it was lovely. The cherry on top of the cake was the cast party afterward. Children with autism have difficulties with social behaviors, it's a part of the disability. Making friends and keeping them can be a challenge. Rehearsing weekly, working toward a goal, stretching limits and boundaries together--that's a great way to form friendships and make meaningful connections with other people. It was delightful watching the children play and talk and giggle together.

Getting the opportunity to participate in a production that allows lovely lady to blossom at her own pace, gives her a chance to shine and to feel successful.....priceless. Forming friendships and connecting.....perfect.

Life is good.
---------------------------------------
Lovely lady's bio from the program:
Hannah is quiet and shy but energetic. She loves singing and dancing and acting. It is her dream to be famous.

"We need to show what our children can do."

Watch the video.

I can't wait until Saturday.

Wonderland

Bridgeway House theater production: Wonderland

Bridgeway House provides a variety of programs and services for children with autism and their families. The cast of the play is made up entirely of children with autism and related disabilities. Last year they put on a performance based on Jan Brett’s The Mitten. This year they’ve taken on an even more ambitious project, a longer production based on Alice in Wonderland.

Let's fill the theater! $5.00 at the door

Incredible cast of a dozen actors
(Lovely lady, 12, is playing the part of the White Rabbit. It looks like a lot of fun!)

The performance of Wonderland will be presented at the Richard Wildish Theater (630 Main Street, Springfield, OR) on Saturday, April 12th at 1:00 p.m.

Sponsored by Wildish Sand and Gravel
http://www.wildish.com

For more information, call Bridgeway House at 541-345-0805.

Conversations

Last night, lovely lady (12) had a good friend over. Good friend is a delightful young lady, charming and sparkly. She and lovely lady are kindred spirits. They like to sing and dance, and play video games together, and talk about clothes and hair and makeup. Good friend is not the least bit shy about letting me know that she thinks lovely lady should be allowed to do things like watch television whenever she'd like, wear a bikini, wear eye shadow and so forth. Tonight, it was the mall.

Good friend: Can we go to the mall by ourselves sometime? I think Hannah should get to go to the mall and shop without a parent watching her all the time.

Me, with a smile because we've been down this road before and I know she already knows what I'm going to say: Not yet. Maybe when you're older.

Good friend, deviating from the script a bit: Is the reason that you won't let us go to the mall by ourselves because we have autism? Because we don't.

Lovely lady, not exactly indignantly but in a speak-for-yourself voice: I do.

I don't quite remember what good friend said in response, something like "We don't have autism." I was watching lovely lady, a little floored. As she spoke she glanced at me a little questioningly. I nodded, Yes, that's so.

Lovely lady, interrupting good friend and a little more confidently than the first time: I have been diagnosed with autism.

Good friend, stopping the "Can we go to the mall" mid-thought: You do?

Lovely lady: I have autism, right, Mom?

Good friend: Really?

Me, to lovely lady: Well, I like the way you put it, you've been diagnosed with autism.

Even six months ago the idea of autism just didn't sink in to my lovely lady's awareness. It's come up from time to time, a little like the topics of sex or death or the other big conversations parents know we must have with our children, and so we try to work them in to matter-of-fact conversations as the topics arise. But she hasn't ever identified autism as a part of her own identity, or even shown much interest in the idea.

I see this as a milestone, a milestone with which many families don't have to cope...or dread. I've always wondered, at what point will my lovely lady understand that she has a disability that really does create additional challenges in her life? What will that be like for her to come to that realization? Will my daughter be crushed at the idea that she's different? And, as so often happens, she's astonished me with her matter-of-fact acceptance of what is. She doesn't see herself as "different." She sees herself as a regular kid who has autism. She hasn't been crushed, or even all that concerned. I forget, I think, that for her having autism is like having "impossible" (her words) wavy hair, or a long second toe. It's always been a part of the fabric of her life. We've not made a big deal out of autism any more than we've made a big deal out of combing snarls out of her hair. And she has friends with autism, a whole group of good friends with whom she swims and plays and talks. She sees these lovely friends as girls first, autism is just a part of what has brought them together, and I think that helps too.

I'm curious to see where this will lead. How will she fold this new idea into her own perception of who she is? Where will our challenges lie?

And I am so proud of her.

Where's my book?

"Where's my book?" asked eleven-year-old lovely lady, crossly.

She tossed her covers about, looked under the bed, stomped across the room to look on her desk. "Hmmph!" she grumped, flopping back onto her bed. "I can't find my book."

I offered her the book I'd chosen for her on my last library visit. It was on her bed next to her pillow this morning, with a bookmark inside. As I left her room and walked down the stairs, I glowed.

This lovely lady with autism has been a book lover from the time she was a tiny baby, and a voracious reader from the time she sat down with Are You My Mother? and read the entire book out loud. ("How did you teach her to read?" asked her teachers. I shrugged. "I didn't," I said. "I just listened while she figured it out.") Here's the catch: Lovely lady only liked to read the same things over and over again. When she was a toddler, I had to read Goodnight Moon over and over and over. We literally read that book to shreds. She memorized everything I read to her. At age three, after two readings, she could recite nearly the entire text of Where the Wild Things Are. In the primary grades, she was obsessed with Calvin and Hobbes. Over and over and over she read each book, in her own particular order, pacing the room. If the books weren't handy, no matter. She'd already memorized them anyway. Finally she branched out into chapter books, but only certain chapter books, usually books in a series, and always the same books over and over and over. Betsy-Tacy was the first of these kinds of books-- I "forgot" to pack lovely lady's beloved Calvin and Hobbes. And in her backpack instead, waiting to be discovered during the long drive to Grandpa's house, was a pretty book with a charming picture of little girls on the cover.

At some point we realized that lovely lady, while a very fluent reader, struggles mightly with comprehension. Reading the same stories over and over help her to finally understand what the story is really about. This past school year, I insisted that she spend twenty minutes a day reading a book that's new to her. You'd think I'd asked her to fetch me the moon. Every day she grumped and groaned as she grumbled her way toward her favorite reading chair. But as the year wound on I noticed that the grumping and groaning during the actual reading time had waned. She usually sits to read now, instead of pacing. Instead of pretending to read, but reciting a different book instead, she sits quietly, turning the pages.

Last night she was looking for Bridge to Terebithia, a book she's never read before, because she wanted to know what came next and couldn't stand that she couldn't find it. She started a new book and bookmarked her place because she wants to read it again the next day. She was able to tell me a little about the story. Just at the point that I was considering clearing out all of the more "girlie" chapter books, she's combing the bookshelves for new books. She's growing up and learning how to read, to really read.

Her victories may be small. But for her, and for me, sometimes those small steps are huge. With this lovely young lady I don't take the little steps for granted.

What a blessing, that little glow I feel when I think about her discovering the world of books in a whole new way.

What Would I Change?

Tonight I walked Poppy to a friend's house to deliver eggs. This friend is a new friend, one of those charming and lovely people that we all wish we could be because she's so thoughtful and positive. She and I started talking about autism. Families of children with autism and children that we've known and worked with. She remarked that by now on my journey with our lovely lady with autism I've probably got a lot to teach other parents.

"Yeah, what not to do!" I laughed. Compliments make me uncomfortable.

"What would you do differently?" she asked. That's what I like about her. She asks real questions, and she really wants to know.

I forget what I said except that it's hard to second-guess, and then told her some stories about lovely lady when she was little. But I kept thinking about her question.

Maybe, if I could go back, I would worry less and enjoy my daughter more. Her early life was filled with therapies-- intensive one-to-one tutoring followed by three hours of preschool, a play therapy program at home, gymnastics classes and play dates. I don't regret the time or the therapies, but my mind was filled with therapy details. Planning for meetings and hiring tutors and teaching her myself and trying vitamins and making phone calls and reading message boards and gathering information. Worrying, and trying to do whatever I thought might help her.

Then I second-guess my answer. I wouldn't change any of the therapies or activities, any of the things we did back then. So, what if I had worried less? I know that the worry, the fear of the unknown future and of my daughter's diagnosis motivated me to read, to research, to return to school, to throw my time and energy into filling her time with tutoring and therapies. Maybe we would have missed too many of those teachable moments and my lovely lady would be a different child today. Or maybe not. Maybe she would have come through shining and having faith that her own quirky self is exactly enough because we just let her be.

Who knows?

Instead, if I could go back in time, I wish I'd had the perspective then that I have now. Confidence that life is good. Faith that God will give me what I need. Knowledge that I've got the strength and love and courage to see my lovely lady through whatever our lives together bring to us. Maybe with that kind of knowledge I wouldn't have made as many mistakes. But the only way to gain that kind of perspective is to walk the path. What it all comes down to is trust. As parents we have to trust our instincts and trust the path we've been given. Do what's right for our children. Forgive ourselves when we make mistakes.

And, instead of laughing it off with a silly joke, say "Thank you" and mean it when someone gives us a sincere compliment.

What We Need

"Fair is not getting what you want. It's getting what you need."

A lesson I repeat to my children daily.

My lovely lady with autism was diagnosed eight years ago. It seems like yesterday. It seems like forever.

I expect my inital reaction was pretty typical. I read everything I could read. I went to support groups. I designed therapy drills and exercises. I focused on treatment and preschool and supplements and therapy and what am I going to do for her. Immersing ourselves in the doing helps block out the fear and gives us some illusion of control. At least it did for me. Fear of the future, fear of the unknown, fear of the "what-ifs," just plain being scared for my baby girl.

We finally got to the point, though, where everything was in place. She had a great treatment program at school. We had an established play therapy program at home, with wonderful, loving tutors. I had returned to school, a Master's program in Early Intervention, special education for infants, toddlers and preschoolers.

That's when I started to ponder....What does this mean for my life? Why me? Not in a whiny poor-me way; rather, "Why me" in a soul-searching, why do these things happen kind of way. God doesn't usually write us letters to explain, or send enlightenment bolting down out of the blue. Most of the time we are left to search and ponder and pray and try to find the path because finding our way is an important part of the journey.

Once in a while, though, we see a signpost. We're in the right place at the right time, and the message is clear.

I was sitting in a class. Children and Families, I think it was called. We discussed issues commonly faced by families of children with disabilities, addressed cultural issues, learned about working with different kinds of families. We had a guest speaker that day, a Native American woman talking about her tribal culture and her experiences in the last of the reservation boarding schools. (A fascinating topic on its own, though not exactly a stellar time in U.S. history. You can read more about it here or here.) During the question-and-answer session, someone asked her, "What were the views of Native Americans toward children with disabilities?" Her reply: "Some tribes believed that a child with a disability was a curse, or that the family had done wrong. But my tribe treasured children with disabilities. They believed that a family was given a child with a disability, not as a curse, but as a gift because that child had something, some quality, that the family needed."

Well.

I felt lightheaded. I almost started sobbing right there in class. I still cry when I remember.

Now I believe that the message was so overwhelming not because it was something brand new, but because she spoke what was already hidden in my heart. I needed the flash of lightning to light the signpost that was already standing on the path.

I carry my knowledge in my heart, even on the most difficult of days. This child, her presence in my life, our life together and the challenges we face, has given me gifts that cannot be measured. Compassion and patience. A challenging life that requires my active participation every single day. Appreciation of even the smallest steps. Grace. Boundless love. Knowledge that when I get to the very edge, to my limit, I can stretch just a little further. Friendships. Knowing that even when I stumble and fall-- when I yell, when I cry, when I whine-- I will eventually pick myself up and keep walking.

Faith.

It may not be what I want. Even though I wouldn't change a thing, even though I've accepted this gift wholeheartedly, I would not have freely chosen this life for myself. It is a gift chosen for me.

Sometimes you just have to close your eyes, open your heart and trust: I've been given what I need.

The Unwritten Rules of Friendship

The Unwritten Rules of Friendship: Simple Strategies to Help Your Child Make Friends, written by Natalie Madorsky Elman and Eileen Kennedy-Moore

"Unless they know the Unwritten Rules of social situations, children cannot possibly use social skills appropriately. Teaching children social skills without placing these skills in the context of unwritten rules is like teaching children to sail on dry land. They may learn the mechanics perfectly, but they don't really understand when and how to use them....What good is it if a child can list all the steps in problem-solving but doesn't know that new relationships cannot tolerate conflict? Social skills training tells children how to act. The Unwritten Rules go beyond this basic training by helping children understand social roles and expectations so that they can choose behaviors that fit the situation." (p. 7)

The Unwritten Rules of Friendship is written primarily for parents of children who struggle with friendships. After a brief introduction, the authors break social skills and social relationships into categories based on types of children: The Vulnerable Child, The Intimidating Child, The Different Drummer, The Shy Child and so on. Each chapter identifies and discusses the behaviors exhibited by each type of child from both the child's and the parent's perspective, discusses what may be triggering the behaviors, and talks about positive social behaviors that seem to come more easily for each type. The book goes a step beyond offering discussion and broad suggestions, however. For each chapter, the authors have listed the "unwritten" social rules that may be helpful for children of that personality/friendship type to learn, clearly and concisely in language that most young children can understand, and they offer specific activities that parents can do with their child and gives ideas for connecting with teachers to help the child develop their skills in the school.

Though the authors are careful to say that children on the autism spectrum, for example, may need more social training than parents can offer by using the activities in this book, The Unwritten Rules offers some good ideas for helping all children understand more socially appropriate behaviors and habits. Lovely lady has started a gratitude journal, for example, to list things for which she is thankful. The unwritten rules themselves are concrete, specific, and easy to understand. The activities are simple and direct. Perfect for lovely lady.

I don't necessarily agree with all of the suggestions offered, nor do I think that all suggestions will be a good fit for every child. But that's the way with parenting and teaching books, you take what you can use. And like many (most) parenting books, it really boils down to a whole lot of common sense. What the book does offer is those great rule lists, already broken down in a way that will be easy for your child to understand. The Unwritten Rules of Friendship offers good suggestions and insights, and that it's definitely worth reading if you have a child who struggles socially. It's worth at least skimming for ideas for any parent who wants a nice list of "rules" to help teach children to use more pleasant and socially appropriate behaviors-- for example, there's a section on whining and how it can affect the people around you. It offers some very nice tools for building social confidence and manners.

Today I am tired

Today I am tired.

I am tired of being yelled at.

I am tired of having to implement token systems to reward appropriate social behavior, which really means that I'm trying to find a carrot big enough to help my child treat me with some basic respect and decency instead of growling (yes, real growling) when she's asked to do her chores, pick up her socks, do her math.

I'm tired of seeing the way it affects the little ones, having someone stomping and yelling around the house. I'm heartbroken and proud at the same time to see how they are all usually able to accept this as normal life and treat their sister with love and grace. And worn out by redirecting and disciplining when they start trying out the same kinds of things.

I am tired of feeling edgy and irritable by evening because I've been screamed at off and on the entire day.

I am tired of hearing "I hate you!" and "You hate me, don't you!"

And though I never tire of saying, "I still love you," to the first, I am tired of fighting the temptation to respond to the second, "I always love you but right now I sure don't like you much."

I'm tired of autism, pre-teen attitudes, the hormone roller coaster, having to establish and re-establish appropriate boundaries, and temper tantrums.

I'm tired of holding it together.

On a normal day, lovely lady's unpleasant behavior rolls right off my back. I am able to be firm, loving, direct. I don't take it personally. But every once in a while I have a day like today where I just. don't. want. to. deal.

Homeschooling has helped. Fewer demands, more support when learning new things, less energy expended blocking out busy-ness all day, lower anxiety has helped lovely lady's moods and behavior even out.

Maturity has helped. I remember when she was flopping on the floor and screaming over every little thing, no matter where she was or who she was with. Now she has learned that it's not appropriate behavior around friends, or with other adults, or in classes and activities. We still deal with the behaviors at home, but it's mostly with me and even that has improved slowly but surely. Most days knowing that makes it more bearable, but not today.

Loving kindness has helped. Responding with flexibility, humor and love helps us all weather the storms. And today I'm not sure how much loving kindness is left in the tank before I get to losing my temper and having a tantrum myself.

By tomorrow things will be better. My charming lovely lady already came into the kitchen and danced with me just because. For her once the storms are over it's as though they never were. But those storms leave my spirit battered and my heart bruised.

Most days I focus on lovely lady's many victories. It's a joy and a blessing to have this wonderful child in our lives. It's an honor to help her grow and learn. I try to keep my thoughts directed toward the positive so that I can truly celebrate her life.

Today I'm tired.

Now I've got that out of my system. Excuse me while I go have a good cry. Tomorrow, or even today, I will see something in my lovely lady to celebrate that will make this all worth it. I'll write about that too.

Curtain Call

"Am I Famous, Mom?"

The newspaper article on Sunday's Bridgeway House production of The Mitten (read my glowing post about the play here first if you haven't yet) was in today's newspaper, the feature article on the front page of the Arts section. I was delighted when I saw that the article was out. I showed lovely lady that her play was in the paper, a nice long article. I sat down to read it right away.

And....hmm.

When I'd finished reading, I felt let down. I couldn't put my finger on why, but I didn't feel inspired any more. The article was very long and detailed, well-written, had good photos of the children, and ended nicely. But still....

It wasn't until later this afternoon I realized why. After dropping off lovely lady at her girls group, I chatted with the mothers of lovely lady's two friends who'd also been in the play, and found that they'd felt the same way-- somehow disappointed but unable to really express why. Driving home, it dawned on me that we hadn't seen our daughters, our lovely, joyful, beautiful daughters in the article. The reporter, a very nice and gentle man, kind and well-meaning, had walked in expecting to see disabled kids, and that's what he saw. So that's what he wrote. Our children disappeared behind their labels and behaviors. We got to read about the difficulties and the behaviors and the tears instead of how the kids persevered and practiced anyway. Was the play a challenge? You bet. Darn tootin' it was, just ask the exhausted director and the parents who had to help their kids hold it together during and after play practice. My lovely lady had an utter sobbing meltdown over changing her clothes after the last dress rehearsal.

Because the play went well, Mr. Keefer wrote that they "played above their game." But they didn't. They really didn't. This was no miracle. The cast of The Mitten responded to the audience, to the fact that it was the real thing, to the energy in the theater...just like the cast of any play anywhere. It was their moment to shine, and they knew it, so they shone. Because they are children first and foremost. Great kids. Funny kids. Charming kids. Who happen to have autism.

I did like this part, near the very end (the lecture happened during the run-through, not during the actual performance):

The show was sweet and funny. But was it art? This was, after all, nothing but a half-hour grade school performance. People like to gush about "risky" art, even when the risks are utterly conventional. This was a true theater of risk. No one involved had a clue what would happen on Sunday afternoon, from the kids and their parents to the director. "The Mitten," in that sense, was a grand piece of conceptual artistry, raising questions of identity and difference without a moment of preachiness. When Annie stormed off stage to lecture that hapless mom, she broke the fourth wall of theater more honestly than any postmodernist playwright ever has. We are all part of the show, the moment said, no matter how much we might prefer to sit back and watch.

~Bob Keefer, “Opening Act”, The Register Guard, February 22, 2007.

I liked the online slide show better. It's got lots of smiles and fun pictures. There's an absolutely stunning picture of my lovely bunny near the end, holding her roses. I'll try to link it here, but it may not work. We'll see.

The Mitten

A child with autism in the family. When people learn that we have a child with a disability, they typically think of challenges and hardships. And those certainly exist. Difficult behaviors, obsessive and repetitive conversations and play, difficulty with abstract concepts and reasoning are all part of our daily life with our autistic lovely lady. When one hears of a child with a disability like autism, triumph and inspiration aren't exactly the first things that spring to mind.

Today, through Bridgeway House, a local agency serving children with autism, lovely lady and several other children on the autism spectrum put on a play loosely based on the picture book The Mitten, Jan Brett's adaptation of a Ukranian folktale. The production was a rousing success. A local company filled a grant allowing Bridgeway House to get rehearsal and performance time in beautiful new community theater, The Wildish Theater in downtown Springfield. Each child got to choose his own character, so the story expanded to include two fairies, a tornado and a train, in addition to the usual forest creatures. The children had been rehearsing since December, the costumes were fun, the theater was packed, the story came off perfectly, and the actors (and actresses!) received roses and rousing applause at the end.

I'd watched most of the rehearsals and was expecting to sit back and enjoy the show with a smile on my face. I didn't expect that for most of the show, I'd be be near tears. The production has been followed from start to finish by a reporter from the local paper. I'd arrived early today to help with set-up, and was sitting in the front row trying to fix lovely lady's fluffy white tail (a feather boa) onto her white pants. He sat next to me and asked if he could do an informal interview. "Sure," I said. We chatted about lovely lady, the play, the rehearsal where she fell down the steps. Then he asked me the questions that had me near tears, the good (but embarrassing) kind of tears: "Tell me about how she's changed over the years," and "What do you see in her future?"

This is the second time in the last two weeks I've been asked a question that really made me consider lovely lady's past and present-- the first was in a videotaped research interview for an autism treatment study, and the interviewer asked "What would you like to go back and say to all of the people who knew your daughter when she was first diagnosed?" To my credit, today I didn't break down crying like I did on the video. I managed a watery-eyed answer. Honestly, I'm not quite sure what I said, even, because I was trying not to cry. And as I sat waiting for the play to start, I couldn't stop thinking about how lovely lady has exceeded my fears, my expectations....maybe not my dreams, but when she was four and spinning in circles repeatedly reciting dialogue from Disney's 101 Dalmatians, I certainly didn't expect that I'd eventually see her hopping around on a real stage in a real theater in white bunny ears arguing over a giant mitten.

"Tell me about how she's changed over the years." She's gone from a child caught in her own world to a young lady, quirky and lovely, gladly living in ours.

"What would you like to go back and say to all of the people who knew your daughter when she was first diagnosed?" Look at her now. I wish I could take her to all of those people who said she'd need visual schedules and extra supports all her life, and say "Look what she can do!" I wish I could take her to all of the people who told me, "Look at all the time she's spending in therapy. She needs time to be a little girl too." I'd say "Look at my daughter now. Because we spent so much time teaching her and pulling her into her life, she's able to be a lovely young girl."

"What do you see in her future?" For the first time ever, I can honestly say, "I don't know." I have no idea because her life has opened up. She wants to be a teacher, an artist, a mom. She may always need minimal supports, but it's likely she'll be able to work and to live by herself and to live her own life. She's going to be able to participate in her life and pursue her dreams.

So it's not the play itself that turned me into such a weepy sap. All parents sitting in the audience of their child's play are proud and excited, and rightly so. And, well, you all know I'm kind of a weepy sap anyway, so I'd probably have been a little teary no matter what. But all of those challenges lovely lady has encountered make her victories doubly sweet. A hundredfold sweet. I watch my other children and marvel at how they seem to sail through life's challenges, learning and growing seemingly without effort. And I celebrate this autistic lovely lady's victories with tears because they have been so hard won, because she and I have worked hard and battled to get to where she is now, and because my worst fears have not come to pass. She can carry on a conversation. She has friends, real friends, of all different abilities. She can pursue her dreams.

Along with the challenges and worries and hardships come blessings. Not silver lining blessings. Real, genuine, life-is-sweet blessings. Life is good. Really, really good.