Facing The Reality Of My Child With Special Needs

Lately, I have taken to telling my 10-year-old that although it’s perfectly fine for him not to like to do something, such as homework or cleaning his room, he still has to do it.

Well, apparently I have to start taking my own advice, because I am on my third warning from my daughter’s special education teacher about completing the (dreaded) Parent Intake Form. And it’s only been a week!

Yes, it’s that time of year again when I am asked to answer such questions like, “Do you feel your child will be his/her own legal guardian?” (No) and “What are your dreams/hopes for your child in the future?” (I don’t know, and I don’t want to think about it.)

This September Lizzy moved up to a junior and senior high school for teenagers and young adults with special needs. Clearly my habit of procrastinating on the task of filling out this form for weeks on end is not going to be tolerated here.

Darn it.

I have never done a good job of hiding just how much I hate these forms. I can’t stand having to answer questions that I really don’t have the answers to. Or perhaps the real problem is that I do know the answers, and I just don’t want to face them.

I have always wanted, and if I’m being really honest, needed, to be seen as the “good special needs mom.” The woman who doesn’t cause a problem and is seen as cool. The lady who turns in every form and every check on time. Somebody who understands the reality of their child’s situation and deeply appreciates the time and skill of the professionals who are charged with taking care of her. I like that teachers have always felt comfortable sharing with me, and I have enjoyed getting to know them. I don’t want to be seen as the “difficult” parent.

But each year that this form comes home, I get angry that I am forced to put on paper what we all know, that Lizzy’s issues are severe. She will, in all likelihood, require the type of care that can only be provided by her dad and me in our house or in a home for adults with special needs. She might be able to have a job, but only if she has constant supervision. When she turns 17, we will have to start making inquiries and arrangements, so that when she turns 18 we can be her legal guardians because there is no way she will ever be able to take care of herself.

Her abilities have always been all over the map. There are times when she can get herself dressed and make herself a snack. Then there are other times when she starts screaming nonsensical phrases, or word salad, and it’s only when you see her that you know she is screaming, “My baby hippo lost his umbrella,” because she has her head stuck in her shirt and needs help.

At times like these, I have little sympathy for parents of children who may have special needs but fall into the “quirky” category. Children who need and receive services in school but will ultimately be able to live on their own. I don’t want to hear that they understand what I’m going through because they don’t. Just like I can’t begin to understand the feelings of parents whose children can’t do the things Lizzy can.

I guess that is why I hate these forms so much. Once a year, I have to put on paper the reality that I have always known. That as amazing—and special—as Lizzy is, she is profoundly disabled.

I may talk a good game, but I guess somewhere deep within my soul I am hoping that she will one day be able to do all the things that I know her brothers, my niece and my nephews will be able to do.

Once a year, I have to face a woman I really don’t like, the self-pitying, angry special needs mom that I do so well hiding the rest of the year. I’m really hoping that one of these days she goes away for good. Until she does, I will break down and fill out the form, adding my apologies to the teacher for my forgetfulness and sincere thanks for her patience. The only nod I will give to my alter ego will be when I get to the last question, where I will give the same answer that I have given for three years straight.

“In which career(s) or specific job(s) has your child expressed as interest?”

“Lizzy would like to be a princess. We do understand that there are only a limited number of positions available at this time, but we believe that if anyone can pull it off she can.”

And once again, it will be the only answer that I truly believe.