During Autism Awareness Month this past April I decided to create and post a meme each day about autism growing up on my Facebook Community Page, www.facebook.com/Autisminsights/. Each post had a picture of my son at different ages growing up along with a message about autism, a “Did you know?” question or fact to raise awareness of the alarming rate of growth of this diagnosis and need to plan for its aging population. When autism is mentioned to those unaware, their thoughts usually associate it with an early diagnosis, research, or a young child with autism, not the adult. Parents raising children with autism have a trail blaze of questions swimming through their brains as their children grow, like: How will my child be provided for? Who will take care of them as they grow into adulthood while still requiring assistance with simple daily living tasks like getting dressed, eating, brushing their teeth, and bathing? Who will provide 24/7 supervision to keep them safe? Who will continue caring for them when I, as a parent, no longer can? And the most heart wrenching question of all; Who will love my child when I am gone? These thoughts sear the minds of many parents. Like a brush fire that ignites from one match, they watch as the inevitable growth of their child unfolds before them. They face the diagnosis of autism every day, not just during Autism Awareness Month. Even the most astute parents/guardians who plan and meet every deadline, every requirement, are not guaranteed a secure placement for their adult child. It’s not like planning for college; the choices are limited and not always a choice, but surrender to dependence on agencies and what is available; a surrender of your vulnerable adult child into the hands of strangers that you have no choice but to trust will care for them. Reflecting back on all of the messages and pictures I posted in April, there’s one that always grabs my heart. It is the one of my newborn baby boy sleeping, wrapped in a blanket trimmed in blue; a pure image of bliss. The message, however, is quite unnerving “He was diagnosed with severe autism at age 3. He will need lifelong assistance. What will his future hold?” When this photo was taken his future was filled with unlimited possibilities. In a one word diagnosis, autism, he was pushed onto a path that could not be detoured. Together, we navigated the uncharted waters of growing up with autism. Autism Awareness, for those diagnosed and their families, it’s every day.
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