Susan Senator

The House called today to tell me that Nat was sick last night! He stayed home all day. I wondered about coming to get him. Ned said that Nat would probably not be comfortable riding around, plus with the rain and all. And of course that’s not how it’s done. The House is supposed to be his home now. They’ll take care of him. They gave him some soup and some ginger ale.

That is kind of what I’d do. Plus a lot of hovering and feeling his forehead to judge fever intensity. Asking him, “Sweet Guy, you okay? How do you feel?” Kisses all around.

I’ve been thinking a lot about this whole thing, as you know. I think one of the problems here is that I have not committed to the idea. In my heart, I don’t want him to be there. I don’t want this to have to be the better choice, thinking of his future. And the reason I thought this was for his future was that a) I thought the House would give him a fuller life, with other kids around playing games going out to events; b) important independent living skills, like cooking, doing the food shopping, doing his own laundry; c) the experience of depending on people other than us, because he must learn how to communicate his needs to people who do not intuit them the way we do here; d) to get him on the radar screen for State services; e) relief for our family in terms of stressful encounters with aggression, screaming, etc. Presumably he would feel relief in this way as well because the House is more structured; he has more of a schedule to his day, and he operates smoothly with schedules, unlike the way I am impulsive and impetuous.

And yet, I could counter every single one of those pro’s with con’s. A) as for a fuller life, his interactions with the other kids may be fairly limited because communication is difficult for all of them. I guess he enjoys puzzles and games like Connect 4 but — when he plays those with me he seems spacey and disengaged. If he is spacey during a game of Connect 4, would the House staff still “count” that as “playing,” and report to me that he played Connect 4 with a peer? B) Important Daily Living Skills… well, he was learning those here, too. I was doing laundry with him. Sure, we did not get to the level he’s on now (folding beautifully), but we were getting there. Food shopping: again, he would go willingly but I did not know how to get him to figure out where things were. I think the House staff is doing that with him… C) Depending on others. Well — I don’t know if he knows how to get the affection he needs from Others. I don’t know if he’s formed any attachments to the others in the House. The staff are not allowed to mention other kids’ names to me, so I don’t know who he chooses to play with. I don’t know which staff he does better with, because the assumption at his school is that all staff are trained the same, and therefore, there is no difference in interaction. I have always felt this was bullshit. (Why did no one call me last night when he was sick? Why did I get a call at 2 pm, rather than in the morning?) D) State services. The fucking State. The lack of resources. The need for families like yours and mine to actually compete for the funding, the housing, the personal care attendants, the jobs.

But — here’s what I’ve been thinking. Why does Nat have to live somewhere else, even the rest of his life? Why can’t he live here or nearby in an apartment with a live-in personal care attendant and a friend? Oh, sure, monitoring PCA’s is a lot of work, and hiring good people is difficult, but — how much control do I have over who is hired in the Housing where he’ll live?

Why can’t we have respite just by having a PCA? Someone who would take him to work, where he would have a job coach? Or to a continuing education program? Is Housing the answer to everything? I want to work on a solution that makes me happier. I don’t want to have to be dependent on others. And if I do, isn’t it better that they be under my own roof?

…E) Stress on the family. Now there’s the rub. I can’t say what I’m feeling here. I just hate what I’m feeling here in terms of the wellbeing of the entire family, the need for the other children in my family to be free of fear, injury, to have my full undivided attention, etc…

But Nat needs me, too. And I need him! The main way we communicate (in the past and when he’s here) is through simply being together, feeling each other’s presence. Sometimes I kiss his cheek. Sometimes we cook together.

Talking on the phone is the primary mode now. It is distinctly dissatisfying. Talking is not Nat’s thing, it just is not. So the conversations are a bit rote. He is certainly listening, but I don’t know how he’s feeling because I can’t see his face, or check in with him just by looking at him.

I guess the concern is also about when we are too old — then what? I can’t designate Nat’s care to his brothers. Maybe, but — can’t say more about that, either. Can I not think about that one just yet? Isn’t it enough for me to plan for the next 5 -10 years? How do I even know what Nat will be like in 20 years? If I see how he’s changed (Improved) in the last six years, it is awesome. Even the last two years. So …

I guess the thing is to somehow have enough money to have choices? Or you have to be very clever with agencies that are out there? But can’t I worry about that even in 5 years? Will he be so deprived of funding, simply because we chose to keep him home with us while he attends school?

I have been saying to Ned for so long that I want to make an apartment out of the basement (which is actually completely above ground, with big windows, and has enough space for a small bedroom and a living space, a pantry kitchen (the Silence of the Lambs room in the back), and there already is a very primitive bathroom (primitive is a euphemism; this house is 130 years old). If we had an apartment there, it could be like a “halfway house,” a kind of compromise for Nat’s independence. We could probably fit a live-in person down there in the living space (a couple of luxury sofas, dining table, something like that) along with Nat, who could assist him in independent living and get him to work, or wherever. But he would still be around a lot more.

Ned has resisted this, not only because of the money, but because he doesn’t see the point. “Why not just have him live in his room?” he asks. But that would be too much living here. That would seem dead-end-ish. More of the same. But if he had his own space to keep clean, an in-law apartment, with cabinets to stock, meals to cook, wouldn’t that be more of a realistic adult scenario?

And it would not be forever. It would be for the remainder of his school years. It would give family members the space they need, but it would keep him near me. And once he seems more ready, we could rent him an apartment with a friend and a live-in, sharing the live-in between the two of them. Again, we could come and go as we please and he could be nearer to us. Maybe he could work in town, at the library or something like that. I’d have a lot of legwork to do, but — couldn’t I manage that?!

This dilemma of mine reminds me of so many of his school years where I fantasized about homeschooling him. How I wanted to be able to do that! To give him the best of care: mine. But Ned always felt that I was not cut out to be that kind of manager. Maybe he was right. I have felt happy about his education, especially where he’s been for the past seven years.

But this housing thing. I feel too unsure about it, too often. I feel I need more control over his life. I feel that there must be a halfway point, between living here all the time and languishing, and living there and — well, I don’t know. Sometimes it feels like it’s not what I expected it to be. Is this about getting used to things? But why should I
have to do that? I’ve always solved Nat’s problems myself. For better or worse.