This blog is a personal diary, a down-in-the-trenches journal, a record of a journey that’s only beginning, a retrospective (as the Goddess of Stress-Induced Flashbacks moves me), and release valve on the pressure cooker that is daily life with autism in the house. I don’t pretend to be literary, I have no agenda, I don’t have even half the answers, and I’m no more or less heroic or bitter or amazing or angry than any other parent with an autistic child. (I’m definitely more mouthy)
When my son, CJ, was diagnosed, there was very little awareness of autism in the larger culture and community. Every step forward in crafting a plan for CJ’s daily life involved training myself, training the people around us, and often flat out fighting: fighting for tolerance, for time to figure things out, for definitions that would lead to different treatment, for accommodations that would give us a chance to find out what CJ was capable of, for choices, for considerations of basic dignity when we left the house each day.
Those days are largely behind us now. Now, everyone knows what autism is, knows someone (who knows someone) who is autistic, has some sense of what it does to families, why the need for support is there, and that anyone who refuses to acknowledge all this is an utter jerk. In some ways, things are much better now than they were for those of us who had our kids before everyone’s consciousness was raised. Early intervention is there, IEP’s are a given, mainstreaming is an everyday thing in many schools, movies have been made, scholarship programs belch money towards those who know how to ask, research has been done and continues, and life skills have been integrated as legitimate curriculum. Over the past 15 -20 years, our kids have transitioned and transitioned and transitioned again as we have created the structures, carved the paths, written the books, designed the therapies and educated the educators and the culture at-large. Nearly every inch of ground an autistic child now covers from diagnosis to high school graduation is a path showing some degree of wear. It’s known territory, varying only in the details as parents choose one route, one drug, one method over another.
And then your child turns 18.
So then what? What defines adulthood for someone who will never be able to make major decisions for himself or chart her own course in life? What has been the point of all the therapy and life skills training, if not to put those skills to use? What about that enormous gray area between neurotypical normal and the bleak choice of living forever with one’s parents or living in an institution? How do we even begin to cope with the sudden loss of the educational, therapeutic and respite services that we have spent the past decade or more building our entire lives around?
And hell the hell are we going to afford it…whatever “it” may be?
When an autistic person turns 18, he or she is considered “aged out” of the system, and Poof! all that support goes away.
There ARE some answers…there are a few major options that can be applied for, sought out…if you know where to look…if you have someone to ask…if you have the time and the sheer cussedness to dig and search and read and cobble together an understanding of how you can attach your autistic child to existing federal or state programs…programs that were designed for other populations with different needs. There are legal solutions that will allow you to provide and protect your adult child…but they have to be timed carefully, and involve intricacies and risks.
And a few…still precious few…but a few intrepid families or organizations are beginning to explore ideas and to create living spaces for these “aging out” or “transitioning” autistic young adults. This new population is poised to explode in numbers in the next decade as an entire generation of autistic children emerge into adulthood with a phenomenal amount of system-based investment and a whole different level of parental expectations behind them. Institutional living won’t even be a consideration for many of these families, while continued living at home in the parental household will be limiting and unacceptable for both parents and adult children. And so, one last time, I find myself at the forefront of the “next big thing” in this life with autism.
CJ turned 18 in August 2013. He’s going to need a place to live where he can be safe, enriched and as independent as his life skill set allows him to be. He will never be able to live alone, and he will always need a caretaker to oversee his daily routine and his medication. But he is capable of so much more than simply sitting in my recliner and watching TV all day long. He has friends and interests and capacity that will suddenly go untapped now unless I can figure out how to shape a space for him.
There are people out there telling us that jobs and housing issues must be addressed for autistic adults transitioning out of the system. There are people showing us what they’ve done to make living and work spaces for their adult children. But it’s an uphill battle figuring out HOW they’re doing it.
So I’m doing it. I’ve set up a guardianship for CJ that took effect right after his 18th birthday. And now I’m in the process of figuring out how to build a house for him and a few friends…a house that is not my house…a house that makes sense for a group of autistic boys, their caretakers, and their parents. It’s already involved a lot of research. It’s going to require a lot of positive relationships. And somehow, I’m going to figure out how to fund it.
And that’s the point of this blog. I”m going to outline this journey, day by day, and step by step as I go forward, as my family ages out with CJ. I hope to make new friends, new connections and to find new support as I go, and that what I learn might be of use to others coming up behind me.
So come on along. Tell me what you think, ask me if you think I might know, and point me to places you think I should be looking. At the end of it all, there will be a house.
And hopefully, a blueprint for many more like it.