Kids Are Weird
Kids are weird. Aren’t we all? We all have an idiosyncrasy, weird tick, vice, odd habit/preference, etc. And for the most part, other than Seinfeld (for those of us who remember the 90s), we seem to be celebrating those in each other. However, when it comes to differences caused by damage to the brain, it seems we still operate more from fear or a lack of understanding, and many times, understanding only comes through a personal experience.
I’m writing this as I absorb a tragic local news story about a 5-year-old little boy who was severely autistic and non-verbal. The thought of someone with a special need being treated as an annoyance, someone to be disposed of, or as less than human crushes me. I realize I'm more sensitive to this story being the mother of a child with special needs. It’s a position that has opened my eyes to ignorance and discrimination, but one that coincidentally has opened up a special pocket of the world that celebrates and shouts inclusion.
My son Asher was born at barely 26 weeks and weighed 2 lbs and 1 oz. He had an extremely traumatic first 5 months of life due to his very early arrival and a virus he caught while in the NICU. His tiny body fought through collapsed lungs, jet ventilators, blood transfusions, paralytics, NEC scares, pneumonia, etc., in addition to oxygen, breathing, and heart monitors that kept him plugged into a wall for most of his first year of life. We almost lost him on several occasions, and this experience left him with damage to part of his brain.
As with many marginalized groups of people, my son did not choose spastic diplegic cerebral palsy. There’s a misconception that people with developmental delays and disabilities don’t have as much to offer in relationships and friendships or to the world in general, and my son’s diagnosis at 18 months old very abruptly brought that way of thinking into sharp focus.
I was immediately fearful of the new imagined future for my son, and I felt the isolation closing in. I emotionally exhausted myself (and still do) constantly trying to forecast how he would be treated as he got older or what he may or may not ever get to do or experience. I was hyper-focused on the limitations that other people would place on him, and all of that was due to fear and a lack of understanding.
I admit I hadn’t paid much attention to the word “inclusion” until the need for it touched us personally. I wish I had been exposed to an inclusive environment much earlier in life so these kinds of differences wouldn’t seem so foreign, scary, and isolating, just as they did the moment we heard Asher’s diagnosis. I read somewhere that a failure to teach inclusion to ALL students is the same as exclusion, and I agree 100%.
We learned of High