Looking Back: A Special Needs Child’s Struggle for Freedom

Since it’s Memorial Day and we take the time to honor those who have fought for our freedom I thought I would remind you to look back and appreciate all the struggles and victories you and your special needs child have faced. As I have mentioned, my child was never supposed to walk or talk but she does all that and more. Even if she had never made those strides (pun intended) we would love her and be proud of her, because the end result is not important – it’s the fight. As a a parent I have also had to fight – the school, the system as well as my own worries and expectations. Those who serve our country deserve our thanks and respect and I do not mean to take away any of their honor. If anything, watching my child and other special needs children battle for their own type of freedom gives me even more admiration for our men and women (and horses and dogs) in uniform.

Here is an excerpt from a piece I recently wrote for a fundraiser for The Chime Institute, which runs CHIME Institute Logomy child’s charter school based on inclusion. It was performed at Chimeapalooza as part of a multi-media celebration.

When I heard from the Regional Center that there was a CHIME Infant and Toddler Program for my baby daughter with special needs, I almost cried. Then, when I heard that I could bring along her typical twin brother and that it was free, I think I did cry. The Infant and Toddler Program was 65% special needs kids and 35% peer models. I loaded up my sixteen month old twins and explained that yes, he was walking and that no, she was not – and maybe she never would.

But she did. She graduated out of Regional Center Early Intervention, and the parade of therapists coming to my house stopped. From there the twins went to the CSUN Lab School – aka The Child and Family Studies Center. This time the program was 65% typically developing children and 35% of the program was saved for children with special needs with support from CHIME. I had to explain that yes, he pretty much knew how to use the potty and that no, she didn’t use the potty yet…and maybe she never would.

But she did. Preschool came and went, and then it came time for the lottery for the CHIME Charter Elementary School. I found my way through the maze of residential streets south of the boulevard…and a mysterious orange orchard…and handed in their applications. Maybe I was kidding myself. I knew the odds were stacked against us and that most children don’t get in, but maybe she would.

But she didn’t. But her older brother did! And that meant…the twins were in, too! I requested that they stay together in their kinder classroom – only the first of many, many requests I would make of the CHIME administration – and so off they went, still together.

One day on the way home from pick-up with all three of my kids in the car my kindergarten-aged son asked an innocent question, ”What is the big deal about special needs kids? I mean, why does CHIME talk about them so much?”

“Well…” I answered, tailoring my information to be age-appropriate, “CHIME believes in inclusion, which means that even though the kids can all do different things you can all learn together and be friends. So each class has some special needs kids in it. Like your class has three…”

He cut me off. “No, we don’t. We only have two.” He rattled off the names of his classmates with more obvious special needs. My daughter nodded her agreement. I felt my upper lip break out in a sweat.

“Yes, honey,” I said gently, “your class does have three special needs kids in it.”

“No it doesn’t!” he repeated adamantly, reminding me of his two classmates.

I jumped off the cliff. “The third student with special needs is your sister.”

“No she isn’t!” he objected as if I was playing a silly joke on him.

And there it was…living, breathing proof that the experiment that is CHIME is working so incredibly well. They didn’t see themselves as different from each other, …and maybe they never will.


4 Responses to “Looking Back: A Special Needs Child’s Struggle for Freedom”

  1. Mikibaxter@hotmail.com says:

    I loved this post! As a mom, I’ve had to fight to not have labels placed on my kids for various reasons. Any program that doesn’t focus on differences but celebrates everyone so that the kids don’t end up realizing so much their differences is wonderful!

Speak Your Mind

Tell us what you're thinking...
and oh, if you want a pic to show with your comment, go get a gravatar!