Posts
The Hipwaders Prove Size Doesn't Matter
39 minutes ago
Tuesday, June 17, 2008
Along for the Ride
Camilla Medders wonders about the stereotype that sticks to some disabled kids. Could it be true that they really are happier than the average child?
Subscribe to:
Post Comments (Atom)
8 comments:
What a wonderful essay! I've thought a lot about the same things but never in quite those terms. Thank you for putting it so beautifully. My nearly 5 year old has Angelman Syndrome which has "an apparent happy demeanor" as part of the diagnostic criteria. She thinks eating is an adult conspiracy and is content with her feeding tube. Her daily medication dosages are staggering and she is on a very restricted diet for seizure control. She has strong gross motor skills and can destroy the house in remarkably little time. She thinks that an ant crawling up the wall is hilarious and that a homeless man on the sidewalk is beautiful and funny. "Inappropriate and excessive laughter" is another part of the diagnostic criteria for Angelman, but I think Maggie just finds an enormous amount of humour in ordinary things. When she was first diagnosed, my mother tried to convince me that Maggie possessed all these zen qualities that suggested she was a Buddhist deity. Its true, she's so content in the moment with no apparent longing for the past or fear of the future. She loves all toys and all things bright and shiny, but she doesn't miss them when they aren't in front of her. She thinks water running out of a faucet is a miracle every time she sees it. I resented my mother for trying to romanticize Maggie's disabilities; what Buddhist deity still needs to be fed by someone else and have their diaper changed in adulthood? But for all that, Maggie absolutley understands the notion of surrender, the notion that we can't control our lives and that the attempt to wrestle control is what leaves us exhausted and fearful, that happiness is fully engaging with what is right in front of us. Maggie's chromosome defect would not have shown up on standard prenatal genetic screens, but I'm glad in hindsight we didn't have them anyway. Every kid we bring into the world is a gamble, just like leaving the house is taking chances. I wonder if the push to have more and more prenatal testing isn't a symptom of parents desperately trying to control the process of parenting even before the child is born. But I think learning to surrender to the circumstances that we don't choose, and learning to enjoy the new path rather than longing for the old one we'd planned, is just part of becoming adults. I'll keep trying to teach my daughter to feed herself and to use the toilet, but I'll keep trying to learn from her to just enjoy what is right in front of me, too. Anyway, sorry this is so long, but thank you for a beautifully written and thoughtful essay. It captured a lot of what I'd like to say about my own daughter but don't have the words for.
I loved the article and second Erin's sentiments. I have a 4 year old daughter with Angelman Syndrome, who was initially diagnosed with CP. She uses a wheelchair and therefore can not destroy the house on her own. However, I suspect if she could the bathtub and shower would be running constantly! I often wish I could see the world through her eyes. She delights in all the world's wonders and thinks a ride in the car is heavenly!
JenPen
Okay, I admit that I forwarded this to the Angelman community. :)
Camilla, I love this work. It doesn't romanticize. It's a really nuanced celebration of a real child and a real life -- not the stereotype.
Nice job.
I absolutely agree with Erin that prenatal testing gives parents the illusion of control. Moreover, I don't think most genetic counselors really explain what they're doing-- testing for a few conditions that are common enough to be worth the cost of the screen and that have identifiable risk factors (like maternal age) to determine whom to test--NOT testing for all possible genetic disorders.
Anyway, it seems to me that almost every issue of Brain,Child has one good essay about parenting a child with special needs, and they might make a nice anthology.
Bravo! I've known Chloe all her life, yet your essay has introduced a world to me that I've never noticed before.
Chloe's philosophy of not holding on to the reins so tightly and trusting those around her is inspiring.
I think most of us panic and forget that we could be enjoying this ride.
Thanks for pointing that out.
I just renewed my subscription and was checking to see what I missed in June's essay...
All I can say is "Thank you."
Our son was born with Edward's syndrome, the complications of which, sadly, caused his death 2 days before his first birthday. At his service I shared that one of the lessons he taught me - tho I still struggle with it - is that there is little in life that I can control, and that is ok...but also that when I was too tired to think, a big gummy smile could make it all ok.
Our son died in Jan '04 - thank you for giving me a reason to pause today and think of him, and be grateful for his gifts.
All the best to Chloe's family.
Sandra, Ryan's Mom
I really appreciated and was moved by this essay. I have a son with mosaic Down syndrome who is not happy all the time, but who does shrug off sadness faster and laugh easier than the rest of our family, mostly, in his case because the future and the past are pretty abstract; he lives in the moment. But the issue of control, learning to accept the lack of it, is something that has definitely come up in my husband's and my relationship with our son. And I think I'm much more content to let my first child, my daughter, be who she is, rather than always trying to control her as a result of learning to accept my own lack of control after having a child with a disability. Anyway, you described this all so well, made me see it more clearly than I had before. Thank you!
This is a really beautiful article. What a sweet soul Chloe is.
Post a Comment