We celebrate this month because it marks for us a full year since Eddie has had a seizure! It also has been a full year since he was diagnosed with Intellectual Disability! Why is that a good thing? It means he finally had the label required to access the resources he desperately needed at school. And I no longer have to help him do his homework (when I say “help,” I mean “do his homework and all projects for him so he can save face with his peers”). It is nearly impossible to have your child’s academic and health needs accommodated by school districts when they suffer from “invisible” disabilities. Eddie looks like a sociable, happy typical kid, but underneath, the damage done to his brain from malnutrition, epilepsy, and lack of prenatal care is profound. As a result, it has been a 7-year long and very expensive battle to obtain appropriate help and diagnoses themselves. Those mountains have finally been moved.
Between the lack of seizure activity and his placement in a special education classroom with only 14 other students and 3 teachers, his needs are finally met. And it means whatever progress and development his brain is capable of, he is actually able to move forward. Up until now, he has always taken 2 steps forward only to fall 3 steps back. I cannot begin to tell you the pressure, the strain, the constant frustration for our entire family. Data was constantly erasing from his brain. It still does, but he no longer suffers from mental fatigue. He wasn’t even good at the things he was good at.
Forward motion — just a few months ago, Eddie was drawing simple stick figures with lop-sided smiley faces (definitely his trademark), and now he can draw complex figures and really study his drawing to add the details…more or less. It may not sound like a big deal to you, but for him, and for us, it means everything!
Hop, 2 skips and a giant leap — Eddie is an athletic freak of nature but you couldn’t always tell since you never knew if he would just run in circles, panicking as though he were in a war zone rather than a simple soccer field. Now, he plays mid-field and he controls…no, he dominates the game. He may still be clueless when I ask him to bring me the can of tomato sauce off the bottom shelf, behaving as though I was speaking Mandarin, but he can run a soccer game and set up plays for his team-mates. And this is miraculous!
He can excel within his talents and have SOMETHING to be good at. Something that demonstrates learning, skill, and most importantly, success. And this is such a relief to his parents and to those who love Eddie. Special Education has changed our lives and the idea of returning him to the general education classroom brings me nightmares. Mainstreaming kids with disabilities can sound like a great idea but for some children, it is terrifying and has disastrous health and social implications for children with vulnerable brains.
But for now, the clouds have parted, the mountains have moved and so we celebrate! And since we don’t know what tomorrow brings…I have my personal fight song, “Rise Up” by Andra Day to take with you today: