Susan Senator

Bubble, bubble
Toil and trouble.
–Shakespeare

Karma is a strange and satisfying concept. We had a big day yesterday. We had our first interview with the Department of Mental Retardation (DMR) to begin Nat’s transition planning, (in Massachusetts it is called Chapter 688, as opposed to Chapter 766, which entitles him to a public education and the services required to make that happen. I’ll bet some wanted to call it Chapter 666, because of all the money it takes and the paperwork it makes) because next month he’ll be 18. There are no entitlements post-22. It is then all about eligibility, need, and ability to get it. (We will have all three, I’m sure. I will be in fightin’ form for my boy.)

I came in with my sheaf of papers, all xeroxed and filled out, and the guy said, “Wow, you’re hired!” You bet I’m hired. He was very friendly and had some very good information for us. There is nothing we really have to do now, except start to research vendors and their services. That doesn’t mean I’m sitting on my ass. I made calls yesterday anyway. Fightin’ Form, Folks.

He gave us a great website and the name of the person in charge of our next step, discussion of services once eligibility has been determined. I started to feel that bubble of hope in my throat, probably not what one would expect after talking to a state agency that is chronically severely underfunded.

This office of the DMR happened to be housed in the Fernald complex, which has been the site of a large political and emotional controversy and an example of the terrible choices people in government are forced to make when there is not enough money to go around where it should. Taxes, hello? No? Okay, so here’s the choice, Solomon: Close an old institution for the severely mentally retarded and remove the vulnerable residents from where they’ve been living for decades? Can we really know how that will feel to those people? Or is it that we are seeking to take the huge profit those lands would bring and spread it around more effectively to the many, many other severely challenged DMR clients by investing in personal care attendant salaries, new, state of the art assisted living homes, group homes, job supports?

I think that you could probably still operate some of the residences there, the most needy and oldest residents, and try to transition out the rest to some first-rate residences and sell the rest of the grounds. Then plow all that money into those who transitioned out, and into the thousands of others who are probably almost as needy but living with aging parents or worse. Because if you don’t, what will people like Nat have as adults? What about the quality of his adult life? He is so close to being able to be somewhat independent. With just the right combination of supports, he could do it. I think he could do it. That is my hope bubble talking, and when it starts talking, there is no shutting it up. But don’t you dare try to pop it. Read the book, you’ll understand.

On our way into the Fernald, we passed the Shriver Center, which is where we first had genetic testing as a couple when we were going to have our first baby (guess who). Back then we were screening for Tey-Sachs disease, but we as a couple are not Eastern European enough to give it to our kids (due to NS’s Western European gene pool). Check Tey-Sachs off the long list. Okay, thank God.

The Fernald is also where Natty first went swimming with a class. Many schools out there use the Fernald pool because it is large and very warm.

And so there we were, at the Fernald once more, papers in hand, bubbles in throat, closing a loop.