Susan Senator

I’ve been thinking a lot about Nat’s home program, which currently is spotty (read: non-existent). My reasons for the spottiness are manifold: the good person we had was no longer available; the next best person we had stopped returning my calls and emails; most organized special needs activities are suspended during the summer; lack of money; intertia; lack of good ideas of what hired person can do with Nat during a session; despondency; Nat already has speech/language therapy once a week after a long school day so our town was ill-disposed to give us more, after also paying for his expensive private school and transportation there (around $100,000 for my town).

But a series of events occurred that were unrelated but flowed together in a certain way in my head, illuminating one particular truth: Nat needs a home program right now, even if my town does not agree and the state has me on an eighteen-month wating list for the funding! I am getting desperate for this; see MPWA for details about what happens when I start to feel this way about Nat.

What happened was that first I got tired of his utter passivity, so I began to think that he needed to come down a little from his Resperdone dose; his aggression has diminished so consistently (knock wood) for so long that it seems ridiculous to have him on 1 and 1/4 .25 mg. tabs in the morning and 1 and 1/2 in the evening. I always like to think that he has evolved, relearned certain destructive behavior patterns (although God knows how hard that can be, just see past blog posts; maybe it is easier for Nat, who is younger and a different person from me!)

No adverse affect from the reduction so far. Next, I had a phone call from a friend who has a kid Nat’s age and is very savvy in terms of making things happen (she successfully sued Boston Public Schools for all of his needs, need I say more?) This friend of mine told me that her son was getting behavioral consults at home from this great woman, (L), and it turns out she is the one who worked with Nat during our crisis time! The wheels started turning.

Then I called L and we had a meeting, which was very dynamic and exciting. I felt my energy levels rising and my heart starting to float like in the old days when I would get an idea of what Nat needs to do. I thought, “why the heck don’t we start with L right now, find the money, just do whatever Nat needs?” I asked my friend why it was that older kids like ours don’t automatically have home programs — there is no Late Intervention — little kids get so much more nowadays, the 30-hour home programs, easy access to speech/language pathologists, more private schools to choose from. Why is that? My friend said that the research is all about the little kids and how the early interventions are key, etc., and no one has done research about how the older kids benefit from home programs in addition to school, just like the little guys. I said, “Well, duh! The next 5 years could make all the difference for Nat in terms of independent living! Isn’t that just as important as when he was 3 and had to be potty-trained?”

So today I have a meeting with a young woman who seems very smart and capable and experienced, to see if she can work with Nat on communication and independent living skills at home. I have another meeting with L next week to start to set up the whole thing. I’m talking 6 – 10 hours, that’s all.

But some day soon, in the back of my mind, is the other big fantasy, whereby I put Nat in our local high school for a part of the day with some very qualified teacher/aide, and he gets the vocational and inclusion piece there (our high school has a restaurant, a greenhouse, a printshop, a construction site, an auto mechanics course — lots of potentially good voc ed training, plus our community is literally right next door to Boston and Route 128 high tech). The other part of the day he would be working here, and out in the community, with his one-on-one, the same qualified, humane and fun person, on anything he needed to work on, primarily communication and learning how to function in the world on his own: social scenarios, home alone scenarios, money, traveling, safety, telephone use, self-care, leisure activities. All of this using techniques such as PECS and Verbal Behavior, and Good Old Common Sense Interpersonal Connecting, (GOCSIC, no link because I made it up) which Nat responds to pretty damned well.

With what money will all this occur? For now, we have a little bit from the state for respite. That will run out in 12 weeks. What then? A loan from my loving, but retired parents? Ned’s family? A waitressing job for me? (hey, don’t laugh! I waitressed all throughout college to pay my way through!) How about a book project??!! Maybe I should check out Investors Choice Lending website. I hope to have my town on board by then. How could they possibly refuse a small home program for Natty just on the basis of his age? His need is so great. And his potential is, too.

And I will not take NO for an answer (see book, etc.). This is my kid. Don’t f*** with that. Grrr.