The transition learning curve

I mentioned a New York Times essay by Susan Senator (photo left) in this blog about youth who won't live conventional adult lives. Susan is the author of Making Peace with Autism and The Autism Mom's Survival Guide. Susan left a comment on my blog yesterday and I asked if she could share a bit about her son Nat's move into adulthood (photo right before his prom). As the parent of a child who won't have the conventional job or college schooling, I was struck by a comment Susan made on a Linkedin group at Hopeful Parents: "I'm Susan Senator, parent to Nat, 21, dx severe autism. He has a bright future ahead of him and I am going to make darned sure that continues!" A bright future?! This was something I had to investigate. Susan suggested I post a recent piece of hers about searching for a Day Program. Thanks Susan!

The transition learning curve
By Susan Senator

I’ve begun Part II of Nat’s Transition to Adulthood: the Day Program. November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up. He will leave school that day and move out of his school residence soon after. This is a lot to contend with emotionally and pragmatically, for Nat and for my family. That’s why I’m writing these blog posts: to tell all of you out there to get going as early as possible in your research and in your emotional process. You look at your little guy now and think, “Oh, God, I can’t imagine him grown up. What will that be like? What will his peers be like? Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that. The only lost souls are those who are not feeling happy and purposeful in their lives. That includes you. I hope you are not a lost soul. But more about that later. I suggest you approach this the way your autistic child approaches learning any new skill: break it down into baby steps. Think about your modus operandi, how you operate, how you achieve things, and go with your own model. Maybe you like to do things methodically, one appointment after another. Maybe you do things in bursts, like me: one appointment or maybe ten, and then none for months. Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this? You go to a workshop. Pick one workshop for this year, one Transition to Adulthood workshop. Write down your questions. Ask a few of them, but not all. Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept. There are Federal Programs and there are State Programs. Federal are for everyone, State differ. Who is your State point person? Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them. Just learn their function. I tried to figure out all of Section 8 in one fell swoop: forget that. These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3. These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component. These are called “DayHabs.” The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills). Visit the program. Tour it and get a good feel for it and the clients it serves. Are they engaged? Happy? Watching TV? Can you imagine your guy there?

Imagine your guy there: he is part you, part the child he is now. So you think about how you would feel there, but not using your deep and complex social knowledge. Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest. Does this place match that?

(Be prepared for developmentally disabled adults. They are not as good-looking as kids with DDs. Think about it this way: no adult is as beautiful as a child. We age and uglify. Sorry. But don’t look at these people as lost souls, broken, pitiful, sad. An unusual face is just that: an arrangement of features that you don’t see everyday. It means nothing. A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds. I don’t freakin’ know! I’m just saying, get past what they look like. It’s just a body. We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only. Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it. You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above). You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding. I still don’t really understand this one, but I have a lawyer who does. You are looking to set up a Special Needs Trust.

About guilt: try not to go there. Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone. You have to think of your adult child as an independent adult — that is his right, it is about his dignity. These programs help him become an independent adult, as much as possible. We are so lucky that our society attempts to support those who cannot do it all on their own. We are a society that spends tons on building roads and highways and bridges. We are a society that subsidizes farmers and to some degree, big corporations with tax breaks. Everyone gets help and benefits from our government to some degree. Why shouldn’t your guy? Why is one considered a handout and having our roads built for us considered a given? Think about it. I wish we could all chip in and get along.

I have listed for you the big steps. You break them down. Do one thing at a time. Start a notebook. Save business cards and telephone numbers. Build your network.

Above all, give yourself a break, take your time, but still: do it.