Susan's Blog

Monday, August 27, 2012

When you assume…

Nat’s group home is changing. This is not terrible, it is to be expected. One of the families has a very different set of values and goals for the home, and so the other three have decided to move on. Naturally the bulk of the discussions among the families and our service provider has been about how the young men will deal with this change.

Ned and I figured that Nat would probably be okay with it, because he is actually pretty good with transitions and being flexible — at least in the more recent years of his life. But truly, I always felt that it would be good if Nat could be flexible — my other children as well — because that is the flavor of our family. I find it very difficult to plan things. I don’t like being pinned down. I also find it hard to focus on something that is several events, days, or weeks away when I still have to get through other things first. Ned is much the same; he lives a lot in the moment, and likes to lose himself in his sons, his projects, work, and house checklists. Planning vacations or dinners out, for example, has always fallen to me in this relationship. That took me a while to accept — I still tend to force these things on Ned — but I’m better at it than I used to be.

It makes sense that our sons are the same way. Nat, being the oldest, is the most familiar with how we fly by the seat of our pants. One would assume that because he’s autistic, he freaks out from our “rackety-packety” lifestyle (that’s my mother-in-law’s term), but this is not the case.  We’ve changed many plans last minute, from which restaurant we’re going to, to deciding to stay an extra night on the Cape.

We moved a lot in our earlier days, and this was another change Nat had to adapt to. So it does kind of stand to reason that moving out of this particular group house would not be terrible. The big question we all had was how to tell our guys, and when.

John, the group home manager is just fantastic. We all love him. It turns out that he took the guys on a little field trip to look at a possible home, without telling them what he was up to. He assumed that they would not figure anything out. He was wrong about Nat!  Nat moved 5 times in his boyhood, and then into the school residence, and then into this group home. Nat has come with me on real estate jaunts, to check out houses. He loves wandering through other people’s houses. So when John took them to the potential house, it clicked with Nat immediately. And a few days later he thought he heard Nat saying, “Move out of R___ Road.”

Oh my God, he knows! thought John. So he sat down with Nat and went over the whole thing, what was to come, and when.

I didn’t know about any of this until our meeting today. But it explained a lot to me. I have felt, for the last few home visits, that Nat’s light was somewhat dimmer, that he seemed kind of distant with me. Lackluster. Not interested. I was really worried. Was he depressed about something? Yes, I assumed

So today I visited him in the afternoon, after his day program, and took him out to a big new mall that has a JP Licks (Nat’s favorite ice cream store) and also a Gap (what mall doesn’t?). John told me Nat needed new khakis for work and some button downs. Anyway, as soon as Nat buckled up in the car, I turned to him and said, “Nat, we have to talk about something very important coming up.”

“Yes.” And he was all eyes.

“In the fall, kind of when it’s your birthday, you and D and M and John are going to move to a new house.”  I looked over at Nat. He was grinning his head off.


I continued to describe the house, and how it would be all the same guys, the same day program, the same John. Just the house would be different. “It was time for a new house,” I explained. “Sometimes people move to new houses.”

“Yes.” Giggle giggle grin grin.

Some things are pretty easy, it turns out. With autism, don’t assume stuff, and you may be pleasantly surprised.



If you feel comfortable sharing, i would like to know what kind of differences caused the split. That might be instructive for others. Thanks.

— added by Rob Gross on Monday, August 27, 2012 at 8:48 pm

Whwt a great post to read today.

— added by Dixie Redmond on Monday, August 27, 2012 at 9:53 pm

I agree, Rob. I just have to figure out how to do it without intruding.

— added by Susan Senator on Monday, August 27, 2012 at 10:05 pm

Great. Thanks.

— added by Rob Gross on Monday, August 27, 2012 at 10:51 pm

John sounds like a great find for you!

— added by Donna on Tuesday, August 28, 2012 at 7:20 am

I love your Blog. Todays hits home for me. I try to change things up for Damian alot. He has gotten quite good at transitions already. Not so much at school though-where his anxiety is higher. But if we prepare him he is pretty good. I eventually want him to be more independant like Nat. Hopefully we can get there. You and Nat give us hope.

— added by Jemelle on Tuesday, August 28, 2012 at 10:49 am

At what age did Nat seem to become more flexible, and less anxious? I’m really not liking puberty because of the anxiety and rigidities. Good luck Susan, I love hearing how Nat is doing in his post-school days.

— added by Candy on Tuesday, August 28, 2012 at 1:53 pm

It’s too bad that 3 young men have to move, when the actual issue belongs to one family. After all of the work you put into putting this all together, it’s a shame that your guys can’t stay. Sound like Nat is doing so well. It’s so important to “get it right” and to continue the learning that so many individuals start to “get” once they are adults.

— added by michele on Tuesday, August 28, 2012 at 6:51 pm

My son was EXTREMELY rigid in his elementary school days, to the point where I could not drive him home from school going a different route or if his teacher was absent for some reason and he had a substitute there was hell to pay. He just could not handle it. Change in any form was so threatening. But, with age he’s gotten better. He now lives in a group home for teen boys with autism and change is the name of the game so he’s had to adapt. Staff come and go, he’s lived in two different homes (soon to be a third) plus I believe getting older has helped. Everyone hates change for the most part, but keeping things the same every day for him was really a challenge.

— added by Sharon Jones on Wednesday, August 29, 2012 at 12:04 pm

Hi Candy,
Nat was probably about 18, just a little after he moved into the Adams Drive Residence at the May. He changed a lot from the move, all positive. I think it also helped sending him away for that week to Extreme Sports Camp for Autism in Aspen. He loved it so much, and he got used to sleeping away from us, and being independent. Hang in there.

— added by Susan Senator on Wednesday, August 29, 2012 at 12:09 pm

Thanks, Jemelle!

— added by Susan Senator on Wednesday, August 29, 2012 at 12:10 pm

HI Susan,

I was wondering how you liked the service provider you have chosen. My son turns 22 in May and we are looking at A.

thank you

— added by Brenda on Wednesday, September 5, 2012 at 8:31 am

We love our service provider!!

— added by Susan Senator on Wednesday, September 5, 2012 at 8:40 am