Am I Really Missing the Boat?

Yesterday was another "reality check" day. Once again, I was back at the hospital trying to figure out what we are supposed to be doing with our daughter whom all these people think is broken, and we don't think needs fixed.

This time was better than before. We were really not clicking with her last specialist, and at the advice of another doctor, switched to one of her partners. So, I have to say, this was so much better. First of all, I had all my questions answered. Second of all, she helped me develop a plan for how we will manage this case of arthrogryposis, including which limbs we should start with and in what order (right leg, left leg, right arm).

However, there were still things that bothered me. The first was a question asked by the nurse.

"Is she in preschool?"

At first I responded with a "no", but then I realized she goes to a preschool class at our home school co-op once a week (we've been sick for 3 straight weeks, so she's missed a lot lately).

The nurse looked befuddled at my "no."

"Well, actually, she goes to a preschool class once a week."

"Oh great. Then she does get some socialization."

UGGHHHH! Do people have any idea how tired home schoolers get hearing about "socialization." I thought about telling her that, actually, she's quite socialized for a 4 year old. She has 3 "good" friends, likes to make new friends, loves all her family and also wants to be with us rather than strangers. I thought about telling her how there have now been numerous studies done on the socialization of home schoolers (some even done by university education departments trying to prove that home schoolers are socially deficient) that have proven that, on average, home schoolers have better social skills than their public and private school counter parts. I thought about telling her that socialization is part of the reason I home school. I like having confident kids who understand how to make friends with people, don't instantly judge other kids by how they look or act, and also know how to stand up to peer pressure. But, instead, I just smiled.

Then, a resident came in and looked at our file.

"How long are you planning on home schooling?"

Am I wrong to think that this really isn't any of their business? I have worked with many other doctors at this particular hospital and none of them have ever questioned how my children were schooled. I didn't question it though, I just answered her.

"Until we think it's no longer in her best interest."

"So you're making her go with out an I.E.P. ?"

I wanted to say, "No, actually, her entire education is an I.E.P. (Individualized Education Plan), because she's my only preschooler right now. Her also home schooled 5 year old sister just finished up with all her kindergarten work and has started first grade -- obviously disadvantaged by homeschooling." But, again, I just smiled and said, "No, she doesn't have an I.E.P."

All the questions done, the real doctor came in. Everything was fine. Our daughter has multiple issues with all four limbs and this doctor was extremely helpful, but then she said something that really bugged me.

"She's really more limited than you realize. Maybe you're just used to her because you've been with her for the past year."

Is she really more limited than I realize? Is that really true? I mean, I live with the kid. I'm the one that has to drop everything and lift her onto the toilet when she needs to go. I'm the one that helps her put her shirt on and off. I'm the one that lifts her onto furniture when no step stool is available. I'm the one that waits while she climbs the steps, moves a step stool and climbs onto the furniture, and also waits while she wheels herself places.

Can a parent really not realize how physically limited their kid is?

In addition to that, how would things bode for her if I wasn't as positive about what she can do? Where would she be if I was approaching her from a standpoint of how limited she was?

I just really don't get it. She does everything that she is developmentally supposed to be able to do, with the exception of walking, putting herself on the toilet and taking off her shirt. How limited is a person if they can do all that's expected of them?

I realize that there are hurdles down the road. She'll have to learn how to put on her own braces (something that she isn't expected to do right now because of the design of the braces), how to put on a coat or jacket, how to cook, how to do more complicated chores and how to drive. But, am I missing something somehow? She has no problem manipulating small objects with her hands so handwriting and learning an instrument won't be a problem. She's shown an aptitude for letters, so I doubt reading will be a problem. She's great with numbers. Where's the problem? She's capable.

But, then again, I don't have an M.D., so maybe I'm just missing the point.