A year of light and dark

Sunday 23 June 2019

Friday was the summer solstice, when day and night are at their most extreme imbalance. It reminded me of the last summer solstice — and the year of light and dark, ups and downs, since then — all revolving around Nat, my 29-year-old autistic son.

Last year on the solstice we were at a block party in a neighborhood in Boston. We had become close friends with a young couple, and planned for Nat to move in with them, and for them to be his caregivers.

The couple was eager to extend their family from two to three. We had had long serious discussions with them about the challenges involved. They knew Nat pretty well, and had deep experience with similar disabled populations. They had even moved to a new apartment in order to have space for Nat.

The new apartment was on this quirky cul-de-sac on a hill, a small tight-knit community, complete with a summer solstice party. It seemed magical, like an entirely new experience opening up to us. Nat would be moving in with a couple his own age, with young enthusiasms, and an anything-is-possible approach to the world. The neighborhood only added to the sense of expanding possibilities. It seemed like a good plan, almost too good to be true.

We planned for Nat to move at the end of August. We spent lots of time with his new caregivers over the summer, doing new things from their world. This helped them understand Nat’s full-day routines better, and was exciting for us.

The move went great. But over the course of the fall, things started not going well. Nat has always had periods of anxiety, but it’s hard to pinpoint the causes. He was going through a bad time, with alarming head-hitting. The caregivers were having health issues of their own, which made it difficult for them to give Nat the routine and stability he needs.

We tried to support the new arrangement by having Nat on weekends, and generally being there for everyone. For reasons that are still not clear to me, it wasn’t enough, and things just kept going downhill, including our interactions with the couple. By March, the arrangement that seemed too good to be true proved to be exactly that. Nat moved back with us.

This was a hard time. Everyone involved reacted in their own ways to the stress, which caused conflict between us and the caregivers. I think Nat overall was happy to be back in our house, but his anxieties had not lessened. Was the change of home part of the cause? We’ll never know.

Parenting Nat has involved a long series of choices for him: where he’ll be schooled, where he will live, what he will do during his days and nights. These choices often fall into two broad categories: the exciting but risky, and the safe but underwhelming — another kind of light and dark. And underlying those decisions is always the impossible question: are we doing enough?

Now that he was back with us, we had to decide where he would go next. He could stay with us permanently, but we know that we are perhaps the least stimulating place for him. We get caught up in our own activities and interests, and he is passive enough that lots of time passes doing nothing. He might be fine with it, but it makes us wonder: are we doing enough?

And looming over all of our planning for him is what will happen at the end of our lives? Now he is 29 and we are 57, but when he is 49 and we are 77 (or 87 or 97!), living together will be a very different story. We want him to have a life separate from us. We think it will be better for him.

The arrangement we had with the couple is known as “shared living,” and we thought about whether we wanted to try that again. Nat had been in two shared living situations by now, and our feeling was that it was too reliant on too few people. We know shared living has worked for other people, but that’s another constant in parenting Nat: just because something works for one autism family doesn’t mean it will work for us. Shared living didn’t seem right for Nat.

We talked with other families we know about what they were planning to do. But most of them had younger guys, or far more resources, or were making decisions on longer timescales than us for other reasons. And honestly, housing together with families we’re already friends with could be like going into business with friends: a good way to strain or ruin the friendship. We didn’t want to do that again.

We asked for a new placement in a group home, figuring we’d take a look at what opened up and see how we felt about it. Two months later we were offered a placement, in a house run by the same organization as Nat’s previous group home that he had moved out of the year before.

The residents are a much better fit with Nat this time, and the staff seems eager and energetic. It’s hard to know whether we are getting accurate answers from Nat when asked his opinion, but he has been nothing but positive about moving to this new house. Being in the same organization means we are familiar with some of the logistics, and Nat will know some of the residents from other houses when they do things together.

Although a group home generally falls into the safe category rather than the risky, it feels like this one might be safe without being underwhelming. We moved him in yesterday, and all seems good. We’ve been through this enough to know that it won’t be perfect. There will be miscommunications with the rotating staff, and he’ll come home wearing another resident’s shirt, but nothing is perfect.

We are still connected to the couple, through other circles. But it is awkward now, because we have never directly talked about the strains from the move-out. I hope that we can do that some day.

As I have said before, I know this is not the last time we will have to make big decisions for Nat. This one feels good, but others have felt good in the past too. I’m optimistic but alert.

Comments

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Julian Bucknall 8:46 PM on 23 Jun 2019

Er, Ned, the summer solstice is when the day is at its longest. It’s the equinoxes (March and September) where day equals night.

Cheers, Julian

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Ned Batchelder 9:02 PM on 23 Jun 2019

Heh, oops! I've changed the first sentence :)

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Simon 2:07 PM on 24 Jun 2019

I wish Nat and you all the luck with this.

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Sumana Harihareswara 6:14 PM on 24 Jun 2019

Ned, my best wishes to you and your family; that complicated, only-partly-predictable interplay of causes and effects is hard enough when you're trying to make decisions for yourself, and I wish you all stamina, courage, and acuity as you make choices for Nat.

[gravatar]
Frances 1:51 AM on 25 Jun 2019

I came to your site after watching some of your PyCon talks on YouTube, not expecting it to have content that was anything more than professionally relevant. Thank you so much for sharing about with your relationship with Nat. My partner has an adopted autistic son, and I am new to both parenting and to autism. Being able to learn from your experience, to hear about your struggles, is...I'm not sure how to describe it, but I am very grateful for it. So, thank you!

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