Susan's Blog

Thursday, May 2, 2013


So Nat was hurt yesterday by one of his roommates. The roommate had had a meltdown and punched Nat in the chest and also hit the staff person and the other roommate. I was upset about this, especially after hearing that they had to turn around and go home right away. This means they did not get to go to their new friends’ group home.

I gnashed my teeth and felt my anger bouncing around inside my belly, aiming to get out. But I knew I had to control it. My mantra in the end is, “They are Priority One for a reason.” Meaning, the Department of Developmental Services only grants Priority One status and funding to people who are considered very involved with their disability. Nat is pretty wrapped up into his autism. His roommate is, too.

But it does make me feel the limitations of this living situation. When I heard about this I wanted to yank him out, just like in the school days. I am always quick to react and act; I’m only now learning that I don’t have to act right away about things that upset me. So what I did was to call Nat and get a sense of how he was doing. He was okay-ish. His voice was higher-pitched than usual and kind of full. But sometimes he sounds like that when he is laughing. So who knows? Goddammit I wish there were more clarity with this disability. It is the one thing that torments me, the not knowing how he is feeling. The way I have to guess, intuit. Yes, sure, I do a good job tuning into Nat, but I really truly wish I could be certain sometimes.

Luckily, Nat has some excellent staff at his house. John especially. John wrote me that he sat with Nat for most of the evening to guage how he was feeling. He is also very tuned into Nat. He calls Nat his “little brother” even though Nat is probably only a year younger than him. I hear a lot about how we should not infantilize our guys but this is not that. This is an expression of John’s fondness for Nat, and how much he identifies with him. How protective he feels of him. How like family, too.

Nat and the roommates are so well cared for that in the end we do not have to get really worried and upset over the day-to-day problems. Nevertheless, I called and spoke to Nat myself. I reassured him that his roommate was sorry about the punch, and that he would not do it again. How do I know that? I don’t, but I hope. Nat kept saying, “yes,” to everything. Eventually I said, “Do you want me to come over there to be with you?” And he said, “No.” I asked again, reframing it differently in order to be sure I was getting an accurate response. Again he said, “No,” and in fact added that he wanted me to stay in my house. I started to repeat this, to double-check, and suddenly he said, “NOoo,” and then, “Love you, bye.”

He rarely says “love you,” maybe never. I think he has said, “I love you,” previously, but I think it was prompted by staff.¬† This “love you” was not. So, Nat had generalized something I say to him each time we speak on the phone, and he had chosen to slide it in right when he was basically telling me he didn’t need me at this moment. He was looking out for me, as I was for him.

Next time people say that autistic people don’t really care about others, punch them in the chest.


“Mom go away” is what I get when he doesn’t want me underfoot or checking on what he’s doing. Sometimes I do… sometimes when I know he’s “bad” I don’t.

That’s very unfortunate about the hitting. It’s one of my bigger fears with group home living when he’s older. Although, he’s learning to retaliate when the elder gets after him… and the elder gets even more peeved because “I didn’t start it”… the elder is very narcissistic so it’s never his fault. I have also started him in karate this past term. He’s very easy going and friendly so I don’t anticipate he will swing first since he never has and he’s nearly 12…. but… more and more I think he should be able to defend himself.

— added by farmwifetwo on Friday, May 3, 2013 at 8:45 am

Sad. I will not place child in a group home but am planning for a private home and private care. My child has medical conditions and a blow to the chest like this is very dangerous plus it must be such a horrible and confusing feeling psychologically to be hit.

— added by Jane on Friday, May 3, 2013 at 11:05 am

Susan, I’m so, so sorry that happened to Nat. It’s a terrible feeling when our children get hurt, no matter what their age or size. I love what he said to you at the end, unprompted- what a gift. It’s like he knew you needed it…

— added by kim mccafferty on Friday, May 3, 2013 at 7:49 pm

Poor Nat. I hope he feels better

— added by Stacie Nankin on Friday, May 3, 2013 at 8:24 pm

Unfortunately, my son is more often “hitter” than “hittee.” His residence is also “priority one,” as it were, and each has their own room – something that should be required, IMO. I suggest you look into a smart-phone or tablet for Nat, so you can do face-chat: it makes communication SO much more meaningful! My guy’s speech is very limited; when he does talk it is more rote, carrier phrases than real communication… when I can actually see him, and he can actually see me, things work better.

— added by Victoria Gillen on Monday, May 6, 2013 at 1:31 pm

Hmm… I’ll think about that! You never know… thanks for the suggestion!

— added by Susan Senator on Monday, May 6, 2013 at 3:37 pm

I sat in on one of your talks at the Chattanooga Autism Conference. I work in a residential setting with two young ladies. Sometimes, aggression comes out and one of my girls seems to always be the target (mainly, i think, because she doesn’t retaliate). I hate it each time it happens and I just want to say, from the staff’s point of view, we care, we hurt with them (hitter and hittee), we empathize, we hurt with you (the parents).

I love it when generalization happens! It is the best thing in the world to find out things have clicked after so much!

— added by Saskia on Monday, May 6, 2013 at 8:32 pm

Saskia: How lucky those residents are to have you working there. It’s clear that you like and respect them, and I’m sure they feel it. The parents are grateful beyond words, too. –Susan

— added by Susan Senator on Monday, May 6, 2013 at 8:36 pm

So sorry to read this – I used to work in a nearby residential setting with adults with autism. It was always scary when our residents would aggress towards each other, and sad because it was hard to explain to “hittee” what happened and that we were trying to make the situation better, etc.

My last injury before I left that job was due to stopping 1 resident from injuring another – I would do it again and again if I had to. I cared about my residents – it was hard for my friends/family outside of this line of work to totally understand why I wanted to put myself in that kind of position, but I know that there is such a need for caring residential staff, and too often there is a lot of turnover. I was glad to read about the conversation you had with Nat, and hope that he feels comfortable in his home. He’s lucky to have you as a mom!

— added by Joanna on Friday, May 24, 2013 at 11:39 am