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.
4 comments:
OMGosh! I'm in tears reading that. (((HUGS))) and keep up the great work your doing with all of your children.
What a breathtakingly beautiful post. I have tears in my eyes too.
Congratulations to your daughter on her debut on to you for travelling your path with such grace.
Karen
{{{ Cat }}} - big hugs from the East Coast. You are amazing. Tell her she can do anything she wants. I bet she would make a wonderful art teacher. I happen to know that's a great career aspiration. :o) ~Dawn
that was really beautifully said.
all I can think is "wow"
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