Last week I attended the annual fundraising gala for the incredible nonprofit organization that employs me as my 21-year-old, nonverbal autistic son Skyler’s SLP (supported living provider).
Throughout his lifetime, we have never successfully secured respite services thus, we’ve never experienced a break from caregiving. Aside from occasionally relying on the kindness of friends or family to help us during critical moments where we had to attend something together and couldn’t bring Skyler along, we learned many years ago to embrace a life of ‘divide and conquer.’
So, when Skyler’s case manager informed me that once turning 18, our state allows for a parent to become a paid respite provider for their child, I immediately signed up.
I figured rather than letting the waiver hours continue to go unused, I could at least be compensated (albeit very minimally) for the daily caregiving tasks I was already doing.
However, while my being a certified SLP is a way to utilize his limited waiver benefits, it defeats the purpose of what respite is designed for … giving exhausted parents the ability to clock out!
As I prepared to leave for the gala, I was overcome with sadness and frustration at our all too familiar reality.
Once again, my husband and I wouldn’t be enjoying a night out together. He would stay home with Skyler while I went solo to a black-tie event celebrating respite and other supportive services the organization provides members of our community.
The irony was certainly not lost on me.
This is yet another side of our autism parenting journey that those living a ‘normal’ life will never fully understand. The ability to pour quality time into our marriage, strengthen relationships with friends or even have a social life outside the four walls of our home becomes challenging and often nonexistent.
I’m never giving up hope that we will find the ever-elusive support services for Skyler, beyond just his parents, that we’ve sought after for 21 years.
Not for our benefit, but for Skyler’s.
He deserves a large village of people who offer him love, respect and friendship not because they are paid to do so, but because they actually care and wish nothing but the best for him.
