Susan's Blog

Monday, January 2, 2017

One Giant Step for Natkind

We just had an interesting, positive moment. Some of you know that Nat — still living at home since July — has been exploding into rages almost daily when things go a little wrong/not his way. It passes, but it’s horrible: screaming, slapping his head hard, pleading loudly and sadly for what he wants. But he can’t always have what he wants — no one can. Things break. Too much chocolate makes you sick. Plans change.

Ned and I have been working together on this problem for weeks. We’ve been focusing on getting his meds right. But I realized yesterday that all of my strategizing and analysis has been obscured by my fear, my despair. Old feelings roll me back, pin me down in the past.

Yesterday I needed to talk about this dynamic and Ned was not able to. So I called my Dad and Mom. Dad listened, and eventually was able to organize the pieces of the problem, separating them out to medical and doctor issues; technique of response to the outburst; and putting aside my feelings of failure to help him. “Look, you worry about him, you are deeply, personally involved with him,” Dad said, “and that’s right, because you’re his mother. But you also need to be objective.” He might not have said precisely that, but that’s what I remember. “You need to have a plan,” he said, echoing his own father’s words. (Grandpa Irving Senator was well organized, fastidious, and always had a plan.) “You have to keep in mind,” he went on, “that this behavior is going to happen. It is a patch he’s going through, that he’s gone through before, and it means that he will explode from time to time. But you also need to remember that for most of the time, he’s a great guy. Sunny, sweet. So you have to go into it knowing that this will happen and you need to be ready with a plan.”

Together we thought back to the last time when Nat was like this. It was ten years ago, just before he moved into his school residence. At that time, the school implemented a time-out technique. They would have him go into a small room within the classroom and set the timer for one minute. If he could be calm for one minute, he could come out. If not, he went back in and the timer was reset.

I’m well aware that this may not be a legal technique anymore, and some judge it as inhumane. I disagree. When done with concern and care, the way Nat’s teachers did it, there is a space created for the person to decompress. In that space he can once again think and hear and communicate eventually. And so, Nat learned how to collect himself and then to articulate what he needed and to stay calm even when thwarted. All without harmful restraints. The time-out room eventually faded out and then the staff could direct Nat to sit at a table off to the side to collect himself, still using the timer.

We then had about ten years of Nat thriving in school, work, and with friends. He soared in his development and became the successful man he is today.

The behavior is back. Although we cannot know the larger underlying reasons — PTSD? Wanting not to live with parents? Something else altogether? — we do know the overall catalyst: loss of control. So our task, then, is to help him feel in control even if he cannot fix what goes wrong, or change things to go his way. Visuals! you may say. But Nat is more aural, and wants to hear and be heard. He’s not one to work with velcro boards or Meyer-Johnson stick figures, charts, or the other Behaviorist’s tools — at least not for this kind of problem. He loves calendars and schedules but the problem here is when Life goes counter to the calendar or schedule.

What else does Nat love? Repetition. I reasoned that if I repeat exactly what he is saying to me, he will feel validated. Then I can add in, slowly, my agenda. Maybe.

So today we were ready for the eruption. As soon as we saw it coming on, we put our plan into play. First, I pointed out that he was getting upset. Second, I reminded him that I was listening to him, and that his talking was helping. “Nat, let’s keep talking about it. I’m listening. You said, ‘short walk to JP Licks.’ But Dad wants a long walk.”

“No long walk! Walk to JP Licks up Harvard Street!”

So Ned said, “How about walk to JP Licks up Harvard Street and then take a long walk back home?”

Nat: “Walk to JP Licks up Harvard Street and then walk home down Harvard Street.” Ned and I almost smiled at this point because Nat was making it very clear what (short) route he wanted to take. But then Nat started tapping his head, beginning to get worked up.

“Nat,” I said, “let’s talk about it. I see that you want to walk up Harvard Street to JP Licks and then walk back down Harvard St.”


Ned said, “Okay, Nat how about we walk up Harvard Street to JP Licks and then walk back down Harvard St. and then walk some more.” (This way Ned was echoing Nat and then altering the plan a little bit to get a longer walk without sparking Nat’s panic by using the trigger words “long walk.”)

“Okay,” said Nat.

“Okay,” we said. Ned repeated the plan again. “Okay,” said Nat.

“Okay, great!” said Ned. “Nat, you see what happened? We kept talking, you kept telling us calmly what you wanted and we were able to understand!”

“Yay Nat,” I said, and Ned and I applauded him. Instantly Nat was grinning and laughing.

Off they went. Perhaps it is true that one long journey begins with — a walk up Harvard Street to JP Licks and then a walk down Harvard Street…



— added by shelly Senator on Monday, January 2, 2017 at 12:25 pm

This is brilliant and gets a solid AMEN from me. I am dealing with the same issues and behaviors from a now 20 year old young man with autism and I happen to believe the tools used in the article are the only way to go. My son is (somewhat) verbal, meaning very limited; sometimes I get what he is trying to tell me, sometimes not. When he becomes overwhelmed for whatever reason, the one minute calm down is the way to go. Yelling, anger, threats accomplishes nothing and makes the situation worse. And, a minute (or even two) is actually a long time. It’s time enough to get the message to calm down, things are not going to happen your way, etc. I believe the residential facility he now resides in uses this method also. To hell with legal! (What is illegal about this?) In fact, I can’t think of anything else we’ve tried in the past that actually has worked, other than forcing him to calm down on his own.

— added by Sharon Jones on Monday, January 2, 2017 at 12:46 pm

What an awesome story! Great way to start the year! Love to all of you.

— added by Donna Baker on Monday, January 2, 2017 at 1:53 pm

Very smart! Small variables make minds more flexible!

— added by lisa c on Monday, January 2, 2017 at 1:55 pm

I am thrilled that Nat is making progress. He’s been through a lot this year. I can relate to some of what you wrote.

Today I got my Christmas gift from my wonderful 34 year old daughter with a disability of Autism/ID. We drove by Sears intending to walk at the mall and shop. I thought mistakenly it was closed. I said to her, I think it’s closed. She said loudly and clearly: Sears is closed, that’s disappointing. Her statement was spontaneous, empathetic, and not echolalic.

The Speech Therapist and I have been working with my daughter on expressing 5 main emotions in the appropriate situations. It’s been a year of practice but I am finally seeing some progress. She has grown from having some incidents of aggression and and occasional meltdowns to increasingly expressing happiness, frustration, or anger. I am beyond thrilled for her.

— added by Rowena Beatty on Monday, January 2, 2017 at 6:55 pm

Love your writing love your blog have followed for years this is my first comment (I think).

People over 18 do not wish to live with parents. Men especially don’t want to live with parents especiallly mom. Constant reminder of child v adult.

Living at home is a constant reminder of failure his and professionals working with him. Thinking he misses his life away from home.

— added by Linda Sullivan on Tuesday, January 3, 2017 at 12:27 pm

Wow Linda Sullivan, your comment is very insulting to those of us who do indeed have adults on the spectrum living at home. We have to have my son live at home because of additional medical conditions that no one else can handle at this time. I know living elsewhere right now would create extreme anxiety and worsening of these medical issues as well as his autism so living at home is NOT a reminder of a constant failure of the people who have worked with him but rather shows the dedication of all of us (professionals included) helping him to get better. I know many parents who have their adult kids living with them due to such medical conditions and for circumstances that no residential center could ever manage safely or correctly.

— added by Chris on Tuesday, January 3, 2017 at 4:31 pm

Nice!! D is also very particular about the routes we takes and gets upset if we go a different way. I was wondering if Nat has seen the movie inside out? D kinda references the emotion characters in that movie now to describe how he is feeling about things or what he observes in others. Weird that he can’t say he is sad but will ask me, what emotion (character) am I, and then answer his own question, sadness. It does seem to help him deal with his feelings odd as it sounds.

— added by eileen on Tuesday, January 3, 2017 at 6:29 pm

Thanks for your compliments, I appreciate it! But I think you’re making a lot of generalizations without knowing many of the specifics, or the people involved. For one thing, we are all different and some of us do wish to live with parents, etc.
But what I want to challenge is your statement that living at home is a constant reminder “of failure.” Nat has not failed at anything. Quite the opposite. He has succeeded where few others would, in keeping his head and his dignity and his open, trusting heart. Yes, someone failed him in the past year, but it was not him. He’s also made it clear he wants no part of the past life. But yes, he does miss having his own place.

— added by Susan Senator on Tuesday, January 3, 2017 at 6:42 pm

Furthermore Linda Sullivan regarding your statement, “living at home is a constant reminder of failure.. his and professionals working with him”, the fact that Nat is living back at home with his parents is not HIS failure at all. I mean, seriously, I can’t believe you would even write that statement. The fact that you give no credit to Nat for knowing he is not a failure in the quest to find a good residence and the fact that it is, many times, difficult to impossible to find a good residential setting for adults on the spectrum is NOT Nat’s failure. Finally, although I am sure he would love a great residence and life away from home, I highly doubt he misses the part of his life where he was injured. Nat is lucky to have a very good family he can fall back on and any adult, disabled or not, should be lucky enough to have a home to go back to if needed for a time until the desired living situation can be found.

— added by Chris on Tuesday, January 3, 2017 at 6:58 pm

What a wonderful read to start my new year! When Justin enters one of his OCD spirals I will be referring back to your dad’s words, just brilliant. Beautifully handled, so happy for all of you that your plan worked, and happy new year!

— added by kim mccafferty on Wednesday, January 4, 2017 at 12:56 pm

Love this and that you posted it. It’s a great win!

— added by Sharon on Saturday, January 14, 2017 at 9:39 pm

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