Raising a child with a disability

Is Patrick a "special needs" child or a child with a disability?

I truly don't know. I guess I could say he has a disability in the eyes, because he can't follow well fast moving objects. I guess I could say he has a disadvantage in his muscles, because they are not as strong as other kids'. I guess I could say he is a special needs child, because, well, he requires some things that other kids don't, like AFO's, and therapies, and constant evaluations and so forth.

But then it just doesn't feel right to compare my son to a child that has some type of syndrome, or severe physical, cognitive, or developmental delay. It's not fair to the other moms of these children to compare what I have to go through to what they have to go through. You see, I have it easy compared to them. And Patrick has it easy compared to those children. He gets to take physical therapies, but just to strengthen his muscles, because he can do physical stuff. And he takes speech therapies, but just to get him up to speed, because he can talk. He needs AFO's for his feet, but just to give him support, because he can walk (and AFOs are like getting orthodontic braces, really) And he has this rare disorder called Oculomotor Apraxia, but, you know, he isn't blind.

So if Patrick falls into a special category, I don't know which one would be the appropriate one. In the meantime, I wanted to share this beautiful explanation I read some time ago of what is to have a child with a disability:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley