My 19-year-old son has ulcerative colitis, non-verbal autism, complex needs and global motor difficulties. That description is getting harder to repeat … not because of the various diagnoses but based on the heavily uncertain future for adults on the spectrum, the sheer mention of his age sends me into panic.
With the holidays now a distant memory and entry into another new year has begun, I find myself struggling to accept that my son’s age will soon have a ‘2’ in front of it and if I’m being honest, that my age is very close to having a ‘5’ in front of it!
That’s the crazy thing about time - It truly does fly. No one is exempt from growing older.
Over the years, I’ve dismissed all the statements about ‘not blinking because you don’t want to miss a single moment of childhood’ I think largely because my son has held tight to his childlike behaviors well into adulthood. His love of Elmo’s World would rival that of any 3-year-old, and we’ve never experienced a day in his life where he doesn’t require full assistance with daily tasks like eating, bathing & dressing.
But regardless of all of that, the world still flags him as a fully functioning adult and expects him to magically overcome his lifelong limitations and challenges overnight, or at the very least by age 22.
The pressure that plagues parent caregivers to essentially plan their child’s entire future from the day of diagnosis until the day we take our last breath is unnerving. Initially, the focus is on early financial planning and desperate pleas for admission into the best educational & therapy options available then before you know it, they turn 18 and you’re scheduling appointments with the Social Security office and contacting an attorney to assist with guardianship paperwork.
Reaching adulthood and the abrupt end of traditional services transports me back to 2006 and all the vagueness on how to proceed after his initial autism diagnosis. Yet again, I’m left scrambling to figure out what to do as the options and funding are scarce.
Now that my son is a few months from entering his 20s, it’s as if we are barreling toward the edge of a cliff while hitting plentiful potholes along the way. The coverage for therapy hours is slowly declining due to insurance denials and provider’s claims that no more progress can be achieved - both attributable to his age.
Despite the incredible gains in communication and improvement with body control, state policies and funding dictate that services begin to be phased out – the ultimate decision maker being his birthdate not his needs.
The hourglass has been tipped and time is running out.
The options for transitioning into an adult day program or hiring a ‘respite buddy’ to support him within the community are non-existent and should we ever entertain the idea of residential living or a group home, the wait lists are lengthy and staffing significantly deficient.
So, what are parent caregivers of adult children expected to do? While we continually fight the archaic system that never changes, we must do what we’ve always done … invent, create and build a secure future for our loved ones on our own.
I’ve spent the last few months developing what I’d consider a ‘mom school’ version of a day program that will stimulate both his body & mind. I want him to become more independent, more comfortable integrating himself within the community and to feel encouraged to communicate through spelling more consistently throughout his day.
While brainstorming ideas with the assistance and advice of many caregivers who’ve traveled this unpaved road several years ahead of me (thank you to my encouraging & resourceful social network!!), I simultaneously prayed for guidance and a local team to help execute this plan.
I know my son appreciates my efforts to assist him, but I also recognize that having his mom hovering 24/7 is not ideal.
My prayers were quickly answered when several former therapists, who have always loved him & believed in his intelligence and capabilities, willingly jumped at the chance to be a part of his adult life.
While we have implemented new experiences slowly, so he’s not overwhelmed, seeing the joy on his face when we enter a formally uncomfortable environment truly warms my heart.
Watching him confidently walk the mall, attend a college sporting event and use his letterboard to make decisions about where we go or what we do gives me a renewed sense of purpose and continual hope that he will be fully prepared to live life on his own terms when I’m no longer around.
The sky is truly the limit for our kids, no matter their age.