The Reality of the Future of a Disabled Child

The other day I was in the middle of my morning routine of packing snacks, reminding people to wear underwear, and ordering them to brush their teeth, when I happened to see it, my special needs daughter’s red take home folder.

Inside the folder, along with the words she worked on that day and drawings of the weather for her calendar, was the all-too-familiar Parent Intake Form along with a note:

Kathy, I’m sending home another form for you to fill out. We know this can be difficult, but since Lizzy is now 12, we are required by law to collect this information. If you have any questions or need help please contact me or the school psychologist. Thank you.

I felt guilty that I put it off. I’ve always done my best to face my children’s issues head on, and I pride myself on being acknowledged as a parent who is always on my game.

Truth be told, I hate these forms.

I’ve never been great at defining my children in a sentence or two or stating the goals I wanted them to reach. What I really wanted was for my kids not to have work so darn hard to reach milestones that others did with ease.

I looked down at the form and started to read the questions asking me to list my daughter’s strengths and weaknesses and my hopes for her future.

My mind went back five years ago, when I had to fill out another form.

This time it was for my then three-year-old son. His learning issues are much less severe than Lizzy’s, but he was attending the same special needs preschool that she did. We loved that the school had a variety of programs for kids with issues ranging from speech delays, like Peter had, to helping children with much more severe developmental delays and disorders.

The school had become a “second home” in some ways, and I was friendly with most of the teachers, therapists, and administrators.

At the time Lizzy happened to be going through an extremely difficult period. My days had been spent taking her back and forth to different specialists in an attempt to finally get a name for the disorder that was wreaking so much havoc on her.

I was pushed to my limit and stressed out to the max.

As I dropped Peter off at his class, the head of his program cornered me in the hallway and told me that I had yet to fill out another form for Peter.

I sort of lost it.

I didn’t yell, or get angry at the woman. I knew she was only doing her job. But in my stressed-out state of mind, I quickly filled out the familiar form in a way that I often joked I would to the different teachers, therapists, and social workers that I had known in my many years of being a mom to special needs kids.

If memory serves me it went something like this:

What are the speech goals you are hoping your child obtains in the next three months?

Well, I would like Peter to be able to recite the Gettysburg Address, but if he’s only able to recite one of Shakespeare’s sonnets, I will be happy.

What are the fine motor skills you are hoping your child will reach in the next three months?

It would be great if Peter could rewire the house so we could install central air.

What are the educational goals you are hoping your child will reach in the next three months?

We would be thrilled if Peter could start on physics this year, but we will be just as happy if he starts calculous.

I continued in this vein for the remainder of the form and submitted it. I later heard that the head of preschool program was not amused. Fortunately my school district, the ones that the form had to be submitted to, knew me and my family well. They were familiar with all we were going through and found my answers funny.

I have to admit that the thought crossed my mind to do a repeat performance with this new form.

After all, what did they want to learn from me? Did they want to know that I realized that my daughter’s issues are severe? Do they want me to admit she will not have the same bright future that her brothers will have?

I already know.

Lizzy may not have a concrete diagnosis, but the brain damage that has easily been detected in five MRIs does more than just affect her development and speech. Lizzy also suffers from mental illness that makes staying in reality a real struggle.

There are days she’s able to follow directions and even read a bit. Twenty-four hours later, she is virtually unresponsive.

I honestly have no idea what type of program will be best for her when she is an adult. From the way things stand now, I know that she will probably need a lot of help and that she will never live on her own.

I start filling out the form. Giving the answers I know are expected of me.

Then I get to the last question:

What type of job has your child said they would like, or has shown an interest in?

I write down the most truthful answer I can:

Lizzy would like to be a princess, but we are aware that there are limited positions available at this time. We do believe though that if anyone can pull it off, she can.

Kathy Radigan is a writer, blogger, social media addict, mom to three, wife to one and owner of a possessed appliance. She posts a weekly essay each Sunday on her blog, My dishwasher’s possessed. She is honored to have essays in two anthologies, Sunshine After the Storm: A Survival Guide for the Grieving Mother, and The HerStories Project: Women Explore the Joy, Pain and Power of Female Friendship. You can follow her on Facebook, Twitter and Google+.