Announcement… We’re MOVING!!!
For the entirety of my nonverbal, profoundly autistic son’s almost 22 years of life, I estimate that I’ve asked millions of questions, spent hundreds of hours on the phone fighting for services and funding, battled the ignorance of countless ‘experts’ who repeatedly underestimate his intelligence or overlook his abilities and have been blessed to connect with thousands of families & advocates on this platform who can relate!
As caregivers, we have no choice but to worry day and night about the uncertain future for our loved ones, particularly when they ‘age out’ of traditional services & are abandoned – given little to no assistance or guidance to figure it all out.
So, knowing that it’s never too early to start planning, the day he turned 18, I got busy scouring the internet to research adult programming & resources in all 50 states. To say my findings were bleak is an understatement.
However, we recognized many years ago that our current state of Indiana was among the worst so, if Skyler were to have any chance at a productive adult life, we decided we must move.
We narrowed it down to 3 locations and started developing our master plan, praying for God’s guidance through every step and beyond.
Before settling on the state we would soon call home, I scheduled virtual calls with advocates, state agencies, realtors, adult program directors & other caregivers and during every single discussion, my eyes flooded with happy tears as I learned about the opportunities available. Never in Skyler’s life had so many people and professionals – in a community we weren’t yet a part of – offered assistance, suggestions, encouragement and support to our family!
I’m so excited to share that in a few short months, we will be putting our home on the market and heading West to COLORADO where big things are in store for Skyler and us, his optimistic caregivers. 😊
Available to him will be weekly sessions of therapeutic horse riding and Spelling to Communicate, (with an in-person practitioner instead of just relying on his non-trained mom to be his only communication partner) a few day program options that provide transportation to and from our home as well as many inclusive community and social events for adults with varying abilities.
I remain hopeful that the respite assistance I’ve only dreamed about receiving all of these years is also more plentiful … but even a few hours a week is more than I’ve ever had so I’ll welcome that with gratitude!
I’ve got a handful of ideas for Skyler’s future housing needs and have already received guidance on how to turn those hopes and dreams into reality over the next few years. So, many more details to come on that topic!
I share all of this to say, this uncharted adulthood journey is not easy, but we do what we must to ensure our autistic children have a fulfilling life beyond some obscure age dictated by people who certainly don’t have our loved one’s best interests in mind.
Despite my constant wish for mortality, I know that Skyler will one day be forced to navigate this world without his dad and me advocating on his behalf, so I’m prepared to give him the best fighting chance while I’m still around no matter what sacrifices I need to make.
I figure the best thing I can do is pave the way, finalize all the details and hand him the roadmap!
**If you want to follow along with our big adventure, where I’ll be sharing every detail of our move – the processes (changing SSI, Medicaid & guardianship; securing the waiver; etc) the programs & resources we find and how we overcome the missteps & challenges we may encounter along the way, be sure and join my subscriber page:
https://www.facebook.com/welcometomyautismlife/subscribe
In addition, I will be providing some feedback about Skyler’s next few months experiencing ‘Mom’s Day Program’ – the outings & new skills we try, what I’ve learned from him, the things he seems to enjoy doing and whether his aggression/behaviors improve (and I’m able to stick to my goal of regulating my reactions & responses to said behaviors 😊) now that he’s “aged out” and home all day every day!
