My son, Skyler who has severe, nonverbal autism, dyspraxia and Crohn’s disease is mere months away from turning 21 and it has me constantly worried about what’s next – for him and for me.
Throughout my 20 years of parenting Skyler, the only thing that has significantly changed has been my title. The majority of his life, I’ve answered simply to ‘Mom,” but when he turned 18, becoming an official adult in the eyes of the law, the role of mother no longer seemed to suffice. Continuing to refill his medications, speak on his behalf at medical appointments and advocate for programs and benefits to improve his quality of life would require that I become his ‘Legal Guardian’ and thus embrace another equally important new label – lifelong caregiver.
Rarely have I complained or hesitated where Skyler’s needs are concerned. Sure, it’s exhausting that he still demands essentially the same amount of assistance with every task as he has for the entirety of his life, but it’s all I’ve ever known.
I understand the fact that we may never get off the toddler phase hamster wheel but encourage his attempts at independence in every way I can.
But life continues moving forward even if we aren’t ready to acknowledge it or feel poorly equipped to address it head on.
As caregivers for those who enter adulthood and can’t yet speak for themselves, we are not permitted the luxury of pausing to take a breath or slowing down the pace of this next phase of our lives – planning for the future the best we can with the limited information and resources available.
Now that Skyler ‘aging out of services’ is a swiftly approaching reality, we must act on those plans we discussed when adulthood was far off in the distance, no matter how much I would prefer to just bury my head in the sand and hope it all magically works out for the best.
The idea that Skyler’s needs would forever be front and center was never in dispute. My husband and I would travel to the ends of the earth to find a state, county and community that provides a more supportive environment for our family than the current one we live in.
After years of research and networking, I think we may have found it.
The ultimate decision to move away from the home we love and the friends we’ve made over the past 25+ years is an emotional journey that we don’t take lightly. Admittedly, it’s one that I’m still struggling to process. However, these are often the sacrifices families like mine must make if the outcome will provide significantly more opportunities for our child to have a more fulfilling adulthood and future.
Our loved ones are counting on us to refuse to accept the thousands of denials we hear because our child is ‘too severe’ or has ‘profound needs that can’t be accommodated’ and to change the system to finally be inclusive of the whole autism spectrum for the ENTIRETY of their lives.
So, regardless of where we live or what my title may be… Mom, Guardian, Caregiver, I will forever be Skyler’s loudest, lifelong advocate and will never give up hope that he always receives the love and support he deserves, even after I’m gone.
