My oldest daughter will be seventeen in two months. She is a junior in high school. As such, you can imagine that this is an important year for her. On Facebook and in off-chance meetings at the grocery store, I learn from old friends and acquaintances, people I knew from my girl's preschool or elementary school days, that this is a time pre-college drama. SATs, AP classes, GPAs, extra-curriculars.They are all so important. They are new suns around which families learn to revolve.
But not us. My daughter has multiple disabilities. If you know this already, forgive me while I bring new readers into the loop. She has epilepsy, Asperger's, learning disabilities, an anxiety disorder, and chronic migraines. She is socially more like a fourth or fifth grader, as demonstrated by the fact that she spent today watching old Peanuts cartoons.
At different times, I will tell you that each of these is the worst, the most debilitating, the most worrisome, the most scary. Now, as you may know, I say that about the migraines, which are constant, and just getting worse.
I do not tell you this because I want you to feel sorry for her or for me. I tell you this, because I want you to know that having a disabled child is really, really, really, really hard, and among the many hard things is watching neurotypical kids zoom forward when my kid has missed her first week of school because she has become incapacitated and cannot even walk a straight line without support.
I avoid a lot of people. There is a reason why many of my now dearest friends do not have children. It means we don't have to talk about kids. Parents with neurotypical teens say things like this to me:
1. We feel so bad for X. She was wait-listed at Yale, and she did everything right!
2. We are so worried about Y. She is so tall, and it makes her so self conscious.
3. If Z doesn't get his act together, he will have to go to a state school! He'll just have to pay the consequences.
4. We're worried that, since our kids have trust funds, they won't know the value of hard work.
5. She's only getting Bs.
6. It's so great when they can drive.
I tell my children that people's problems may seem small to you, but they feel very real to them. And that is true.
At a recent visit to the doctor's, I said to my girl, "I hate to you see you suffer."
She said, "This isn't suffering. AIDs orphans in Africa, the homeless. They suffer."
It's like she's ten, and then, all of the sudden, it's like she's lived forever.
I just had to get this off my chest. I'll be funnier next time. If I've brought you down, go here.