I’ve begun Part II of Nat’s Transition to Adulthood:\u00a0 the Day Program.\u00a0 November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up.\u00a0 He will leave school that day and move out of his school residence soon after.\u00a0 This is a lot to contend with emotionally and pragmatically, for Nat and for my family.\u00a0 That’s why I’m writing these blog posts:\u00a0 to tell all of you out there to get going as early as possible in your research and in your emotional process.\u00a0 You look at your little guy now and think, “Oh, God, I can’t imagine him grown up.\u00a0 What will that be like?\u00a0 What will his peers be like?\u00a0 Will they be like a bunch of lost souls shuffling around from van to mall everyday?”<\/p>\n
I will get to that.\u00a0 The only lost souls are those who are not feeling happy and purposeful in their lives.\u00a0 That includes you.\u00a0 I hope you are not a lost soul.\u00a0 But more about that later.\u00a0 I suggest you approach this the way your autistic child approaches learning any new skill:\u00a0 break it down into baby steps.\u00a0 Think about your modus operandi, how you operate, how you achieve things, and go with your own model.\u00a0 Maybe you like to do things methodically, one appointment after another.\u00a0 Maybe you do things in bursts, like me:\u00a0 one appointment or maybe ten, and then none for months.\u00a0 Whatever works.<\/p>\n
First you have to learn about who you are dealing with.<\/strong> I would try to understand the key players, the names of the departments and organizations involved. <\/strong>How do you learn this?\u00a0 You go to a workshop.\u00a0 Pick one workshop for this year, one Transition to Adulthood workshop.\u00a0 Write down your questions.\u00a0 Ask a few of them, but not all.\u00a0 Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept.\u00a0\u00a0 There are Federal Programs and there are State Programs.\u00a0 Federal are for everyone, State differ.\u00a0 Who is your State point person?\u00a0 Cultivate a relationship with a friendly introduction via email or phone.<\/p>\n Next you learn about the programs themselves, what they offer. <\/strong> SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them.\u00a0 Just learn their function. <\/strong> I tried to figure out all of Section 8 in one fell swoop:\u00a0 forget that.\u00a0 These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3.\u00a0 These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment\/earning component.\u00a0 These are called “DayHabs.”\u00a0 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).\u00a0 Visit the program.\u00a0 Tour it and get a good feel for it and the clients it serves.\u00a0 Are they engaged?\u00a0 Happy?\u00a0 Watching TV?\u00a0 Can you imagine your guy there?<\/p>\n Imagine your guy there:\u00a0 he is part you, part the child he is now.\u00a0 So you think about how you would feel there, but not using your deep and complex social knowledge.\u00a0 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.\u00a0 Does this place match that?<\/p>\n (Be prepared for developmentally disabled adults.\u00a0 They are not as good-looking as kids with DDs.\u00a0 Think about it this way:\u00a0 no adult is as beautiful as a child.\u00a0 We age and uglify.\u00a0 Sorry.\u00a0 But don’t look at these people as lost souls, broken, pitiful, sad.\u00a0 An unusual face is just that:\u00a0 an arrangement of features that you don’t see everyday.\u00a0 It means nothing.\u00a0 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.\u00a0 I don’t freakin’ know!\u00a0 I’m just saying, get past what they look like.\u00a0 It’s just a body.\u00a0 We can’t all be magazine people.)<\/p>\n Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only.\u00a0 Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.<\/p>\n Next you find out how to pay for it<\/strong>.\u00a0 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).\u00a0 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.\u00a0 I still don’t really understand this one, but I have a lawyer who does.\u00a0 You are looking to set up a Special Needs Trust.<\/strong><\/p>\n About guilt<\/strong>:\u00a0 try not to go there.\u00a0 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.\u00a0 You have to think of your adult child as an independent adult — that is his right, it is about his dignity.\u00a0 These programs help him become an independent adult, as much as possible.\u00a0 We are so lucky that our society attempts to support those who cannot do it all on their own<\/a>.\u00a0 We are a society that spends tons on building roads and highways and bridges.\u00a0 We are a society that subsidizes farmers and to some degree, big corporations with tax breaks.\u00a0 Everyone gets help and benefits from our government to some degree.\u00a0 Why shouldn’t your guy?\u00a0 Why is one considered a handout and having our roads built for us considered a given?\u00a0 Think about it.\u00a0 I wish we could all chip in and get along.<\/p>\n I have listed for you the big steps.\u00a0 You break them down.\u00a0 Do one thing at a time.\u00a0 Start a notebook.\u00a0 Save business cards and telephone numbers.\u00a0 Build your network.<\/p>\n Above all, give yourself a break, take your time, but still:\u00a0 do it.<\/p>\n","protected":false},"excerpt":{"rendered":" I’ve begun Part II of Nat’s Transition to Adulthood:\u00a0 the Day Program.\u00a0 November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up.\u00a0 He will leave school that day and move out of his school residence soon after.\u00a0 This is a lot to contend with 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