Let the Plans Begin

As the Teenager moves into her senior year and starts to make those important decisions about what she's going to do after high school, I keep thinking that in three years, I will have another rising senior in high school, but his senior year experience will likely be very different.  As a parent with one typical kid and one kid on the autism spectrum, I've learned that transitions can be bittersweet- as one prepares to fledge the nest, I'm reminded anew that the other nestling will probably be sticking around for awhile. 

As long as he leaves me enough milk for my morning coffee, he's welcome to stay, but he can't stay in our nest forever. 

I've recently seen several articles about "autism-friendly" master-planned developments being planned or built.  These planned communities offer lovely homes, employment and transition planning, social skills therapy and recreation opportunities, and almost anything else that a young adult with autism could possibly want.  These communities seem wonderful, and they do present a solution to those with the resources to make it work.

However, what gets lost in social media, in the articles about how wonderful these communities are that leave people with a glowing feel-good sensation of success- problem solved, moving on now, nothing to see here- is that the cost is high; it's out of reach for many families (including the Family of No), and it's not a temporary expense.

As I watch friends whose kids who are on the spectrum and who are slightly older than the Son of Never Stops Eating begin to transition out of adolescence into early adulthood, it becomes clear that the rumors are true; the need is great and growing and that the resources are few.  Because autism is a spectrum, needs vary significantly.  The needs of adults with autism are not issues with easy resolutions.  This great need is not an issue that gets the voters stirred up; adults with autism don't have powerful lobbies or money to contribute to political campaigns.  Especially in the current political environment, one message is clear: if you have an adolescent with autism, you are on your own.

The Son of Never Stops Eating will likely be very capable of living independently with some moderate supports, although he might eat a lot of cheese sandwiches and skip the veggies more than his mother might like. In his ideal home, he has lots of hamsters  (unlike his parents' house, with a strict One Hamster At a Time rule) and a room just for Legos.  However, that isn't true of everyone. Some individuals need less assistance; some will need a great deal more.

It isn't just housing that must be considered.  I don't know yet if the Son of Never Stops Eating will be able to drive, but if he can't, then he will need to be able to access mass transportation or live somewhere he can walk to work.  It also needs to be affordable; which is a challenge in itself in our rapidly growing area.  He will need to be able to access medical care, the grocery store, his favorite Big Box store, a bank, and perhaps most importantly (at least to him) a good donut shop.

Determining  how much he can work without losing the benefits that will be enabling him to work in the first place- like job coaching- is like trying to untie a Gordian knot of government rules and regulations with one hand tied behind your back. His current job of choice, "Taking care of hamsters", has possibilities but none that will pay all his bills.  He'll need an understanding employer and co-workers who don't mind a conversation (or several) about "The Simpsons" or "The Loud House". 

Finally, he will need to find his community- friends, recreational opportunities, people who know him and will watch out for him. 

Our family still has a few years to work on our son's transition plan. I know all too well that these years are going to zoom on by.  I also suspect, because nothing autism-related is ever easy, that other issues will arise in our planning which I am, as of yet, blissfully unaware.  Like many before us, we are beginning the hike up the mountain of transition to adulthood planning with a faded map and few signs to mark the trail. However, it is time to start the journey; we shall see where the trail takes us.