This is us.
A forever, inseparable party of three.
Weekends spent in perpetual motion, trying to keep our 20-year-old, autistic, nonverbal son entertained.
Always on repeat, his mind and body requiring the same regimented plan for the day.
Awakened at dawn due to urine-soaked bedding followed by a quick shower and demand for his favorite Jimmy Dean breakfast scrambles. Shoes laced up, teeth brushed and we’re off – an early morning walk around the neighborhood, a lengthy car ride to nowhere, a stroller ride in the park, numerous laps around the house (which requires blocking his hitting and his attempts to swipe and throw everything in his path) and endless episodes of Elmo’s World commandeering our television… all occurring before lunch.
The second half of the day is a mirror image of the first, with a few errands, a brief dip in the pool if the weather cooperates and a horse-riding session thrown in for a pinch of variety.
Regardless of how much he’s aged, the weekend routine has remained virtually unchanged.
But now, the pressure and frustration of knowing that we are only 1 year away from this exact activity loop becoming our DAILY routine – 24/7 simply because he will ‘age out’ of traditional services for therapies and waiver benefits is what keeps me up at night.
This is the reality for so many families like mine, all because the options for day programming, respite help, assisted living and support of any kind are virtually non-existent for adults on the spectrum.
I’m exhausted and if I’m being honest, I know my son is too.
He’s tired of having no friends other than his parents to take him grocery shopping, out to lunch or into the community.
He’s sick of being underestimated and assumptions made that he’s incapable of understanding simply because he doesn’t communicate with words.
He’s frustrated that he can’t clearly describe his feelings or pain, particularly during a Crohn’s flare up, other than with increased aggression and behaviors. He’s visibly annoyed when after a seemingly endless game of charades, no one can adequately resolve the issue.
The world is full of plentiful options and opportunities for neurotypical people to enjoy the life of their choosing… the job we want, the home we prefer, attending the social events and community activities that interest us, so why aren’t these same choices available for adults on the spectrum?
My son’s life will extend many years past my own and I need to know that in my absence, he will be surrounded by a village of people who love, support, encourage and appreciate him.
So, until I take my last breath, I will keep fighting and searching high and low for the programs and people who see just how incredibly brave, kindhearted, and valuable my son is. He deserves a life full of adventure, joy and acceptance just like everyone else.
