If there’s one thing I can’t stand doing (there are actually many things I can’t stand doing) it is filling out forms pertaining to my daughter. It’s been almost 19 years and I’m sick of answering the same questions over and over. Many of the questions get the old N/A in the blanks because they don’t apply to Hillary’s abilities. The past couple of months I’ve had a number of forms to fill out, and I kind of feel sorry for the people who have to read them because I’m not taking care to write legibly. I’m losing patience for this stuff!
When Hillary was an infant, there was still a lot of hope that she wouldn’t be too far behind her peers. Even with her diagnosis of Aicardi Syndrome we felt that her chances of being only moderately developmentally delayed were at least 50/50. HA! Always the optimist, we went from specialist to specialist, filling out forms, convinced that someone would find something that could be “fixed” and she would begin catching up. Even though her pediatrician kept warning, in his kindest manner, that the gap would get larger the older she got. I loved Dr. Berger, he was always so supportive. That is a subject for another day.
By the time she was about 6 months old it was apparent that things weren’t going quite as well as we had hoped, but with a referral for Early Intervention Services, all things still seemed possible. More forms! All those questions about birth weight, length, my pregnancy, apgar scores, milestones, likes, dislikes, etc, were answered in my best handwriting. Then there were the “intake interviews” where you get to sit there with your child talking to the staff of therapists, nurse and social worker and answer all the questions again in person. Fun! As things went along and we found out about different assistance programs, (known in the political arena as “entitlement” programs), there were more forms! These generally included requests for financial information. As if it’s not enough to constantly report your child’s shortcomings, now you have to look at your tax forms. I was (and still am) always torn between hoping we qualified and being afraid we’d qualify. It’s a double edged sword.
Of course, I would be remiss if I didn’t mention insurance forms. They’re fun, too, but in a different way. They don’t usually need much detailed information, but every now and then they want to be sure that our daughter is still disabled. I wish they would have just looked up Aicardi Syndrome, but I suppose they have a policy or something about checking to make sure they’re not being scammed.
When Hillary turned 3 it was time to get her into the local school district. Yay! More forms and another round of interviews with social worker, therapists, teachers, and learning specialist where we went over the same information again and again. Then we had to look at programs, and once we decided where we wanted Hillary to go there were forms from that school. And so it continues.
Lately we’ve been applying for programs available to our daughter once she turned 18, and taking her to a new doctor and wheelchair clinic. I confess that sometimes when I’m filling out forms it’s late in the day (evening) and I’m a bit punchy. So it was that by the time I started filling out the doctor’s form I was not in the proper frame of mind. Questions such as: “Were there problems during your pregnancy?” and “When did your child first roll over?” just about did me in, and when I saw the one asking for her apgar scores I kind of went crazy and wrote the first thing that came to mind which was “I don’t remember, it was almost 20 years ago!” And honestly at this point I don’t believe it matters. It doesn’t matter now why Hillary is the way she is. Just treat the current problem and be done with it. I do understand that the doctors need this information in the interest of science and not missing anything, but for this parent the point is moot.
So that’s the latest thing about being the parent of a special needs child that’s bugging me. I wonder, why can’t they just have one universal form that I could fill out once, update occasionally, and e-mail to the doctor or agency that needs it? It would save me from being hit in the stomach with everything she is not. I prefer to focus on who she is