I just came back from an eye doctor appointment for Little Miss Adorable. Her doctor specializes in ‘special needs’ and, judging from his waiting room, has a thriving practice. His office is attached to a major hospital and is part of our special needs ‘corridor’ of services. I am so immersed in the land of special needs that I cannot relate to ‘normal’ people anymore. Maybe that’s a good thing.
While waiting for the doc I fell into conversation with the mother of a little girl who I thought was three years old. She was dancing and spinning, sitting on the floor and getting up again. I found out she was not yet two.
I said she’s big for her age.
Oh, her mom says, she gets her height from my husband, he’s 6’1”.
My husband is 6’4” but with a short-stature condition like Prader-Willi Syndrome, Growth Hormone Deficiency means that Little Miss Adorable will always be tiny. Little Miss Adorable and I watched the other little girl dance. I could see Little Miss Adorable get offended when she was called a ‘baby.’ I tried to explain that Little Miss Adorable is actually older, at age 2 ½ and just short. I joked that she gets it from my side of the family, where I’m the tall one (if I stretch I reach 5’3”).
At age 2 1/2 Little Miss Adorable cannot stand independently and collapses like a wet noodle when we try to help her stand for too long (more than a minute). Little Miss Adorable has severe hypotonia (all muscles are weak), and like people with Down Syndrome, very loose ligaments. So she is hyperflexible and has poor muscle control. She will eventually be able to walk, just much later. We watched this other little girl dance, pivot, and bend to touch the ground. Heck, my four year old, Mr. Sensitive (who has Duchenne MD) cannot do that.
I have a confession: I watch other kids move. My own kids have such muscular weaknesses and have worked so incredibly hard to do what they can it seems like magic when other kids do things my guys would never dream off. Climb a fence? Ha! Try get off the ground unsupported. One of the clinical signs of Duchenne MD is ‘Gower’s sign’ where a patient that has to use his hands and arms to “walk” up his own body from a squatting position due to lack of hip and thigh muscle strength. (See Wikipedia for details.) Basically you go into a tripod position or partial kneeling position to raise yourself from the ground. Or if you’re Mr. Sensitive you use furniture or ask for help. I am amazed to see kids get up off the ground by themselves, effortlessly.
So in this doctor’s waiting room Little Miss Adorable and I are watching this girl dance, and I’m starting to feel jealous and angry. The mom continues to wax poetic about her daughter’s amazing (aka typically-normal) abilities. I’m sure they are amazing, just like Little Miss Adorable has amazing abilities in a different way. But I can’t explain how amazing Little Miss Adorable is in a short conversation – it’s amazing she’s alive, that she survived early infancy, that she’s eating independently, that she is socially aware, that she problem solves, that she communicates in unconventional ways, that she is moving via bum shuffle after a year of rolling across the floor. I definitely cannot explain that her two purposes in life are: to bring happiness everywhere, and take care of her baby dolls. Everything about Little Miss Adorable is different, and amazing. And so hard to explain.
So when the mom says what a good eater her daughter is, I get pissed off. Little Miss Adorable is on a calorie-restricted diet – portions are strictly controlled to prevent her from becoming morbidly obese because she will not feel full (and not stop eating). The key feature of Prader-Willi Syndrome is hyperphagia to the point of obesity, injury, or death. At age 2 1/2 Little Miss Adorable is redirected to a preferred activity after she finishes every meal and we never give second servings of food. Our world is becoming rigidly anti-food. We do not have snacks at playgroups. We avoid all restaurants. Family functions (i.e. Holiday Dinners) are a complete disaster.
I am pissed off at this mom, bragging about her daughter’s (typical) abilities in this room. I am pissed off and jealous, yes. But I also have a sense of “how dare you”. You really have no idea how others live. Because as we wait for our eye exams a father struggles to restrain his child (who I strongly believe has Autism). The boy’s hands are flapping, he is rocking, humming loudly, and covering his ears. He is clearly worried about this appointment. The father is doing a fantastic job trying to redirect his son’s attention to the TV. And across the room from us sits a blond boy with thick glasses and the facial features of Down Syndrome, reading a book.
Perhaps all of us parents should have told that mom about all the incredibly amazing things our kids accomplished – speech, eye contact, standing, or just being alive. I would have left feeling better than I did – instead of feeling like being stabbed in the heart with a rusty spoon.
Thanks Shell for letting me Pour my Heart Out http://thingsicantsay.com