My 19-year-old son has ulcerative colitis, non-verbal autism, complex needs and global motor difficulties. He has been dismissed, underestimated and deemed incapable his entire life by those who are trained to support, teach and encourage his growth and development.
I attended a meeting at his autism center yesterday with the understanding we would be discussing revised programming. Instead, I spent an hour listening to all the ways in which my son wasn’t progressing and simply put, no longer fits in.
After the behaviorist outlined the various ways in which my son was deficient - specific goals lacked progress or mastery after a lengthy period, inconsistencies with maintaining achieved skills and slow demonstration of any independence, she then expressed uncertainty on how to proceed in working with him due to his poor level of functioning and comprehension.
I could feel my temperature rise, my body and teeth clenched in anger and frustration at her sugar-coated attempt of telling me that my son being there was a waste of her time.
In that moment, my mind shifted back to the day of his autism diagnosis at age 2 when all the “he will never” absolutes were confidently hurled at us by the neurologist. After all these years, how is it nothing has changed? Why is my son expected to follow along with a one size fits all approach to managing autism and why is there no flexibility with the definition of success?
No one should have to convince people they are smart or capable of learning and achieving great things!
The autism center refuses to acknowledge that spelling (S2C) is a legitimate communication method and his behaviorist never hesitates to diminish or openly express her disbelief that my son is actually speaking on his own behalf when he accurately spells the answers to questions.
At the conclusion of the meeting, the unspoken message was clear – our days attending that autism center are numbered. Although he’s almost 20 and services technically remain covered until age 22, there’s never a guarantee that placement is secured. With such limited options and significant wait lists, there are always younger, smaller and cuter versions of my son eager to take his spot.
As his lifelong parent caregiver and guardian, I spend every minute of my day advocating and fighting for my son to receive resources and opportunities only to be forced to fight even harder to keep them when found.
It saddens me deeply that my son hasn’t been loved, respected and appreciated for being exactly who he was meant to be by anyone outside of his immediate family. In fact, that’s my greatest fear – without my daily reminders that his contributions to this world matter, he will be disregarded and lonely when my life comes to an end.
I’ve been planning and preparing for his future for many years, but the looming early dismissal from the autism center has ramped up my anxiety and requires that I act with even more urgency. I must turn over every rock throughout all 50 states to find the options and loving, motivated & caring people that will give my son an adulthood filled with promise, support, encouragement, independence and respect.
He deserves that at the very least… we all do.