Susan's Blog

Tuesday, December 1, 2009

Advocating For Himself

Nat has been pretty much chugging along, progressing, managing his sensory overload, communicating in many different ways to those around him. I can’t tell you how often I now hear him say, “Want some help, PLEASE!” and (knock wood) he does not even get close to an outburst. In his House he has had a few, but that is no surprise: they are making many more demands on him than we are; plus, there is so much structure there that when it is broken, Nat really notices. Last week he was so upset over a change in the routine that he stumbled and hurt himself. (I questioned the staff many times, and Nat, to be very sure of precisely what happened.)

The most comforting thing of all was asking Nat.
“Nat, where did you get hurt?”
“On your arm.”
“But what happened?”
“You got hurt.”
“On your arm.”
Who’s on first??
Before the whole circular echolalic thing could burst into full fruition, I changed tactics. “What did you hit with your arm?”
A long pause. “The wall.”
Ah. So it seemed that Nat had somehow hurt himself by falling against a wall.

I checked with the staffer that had worked with him and he told me something like this: “Nat tripped over his dresser drawers (still open, always open) and fell, scraping his arm on the wall.” The catalyst was that the staffer had had Nat lay out his clothes for the next day, as always — but he did it after his shower this time, rather than before, and so when the clothes were out on the bed, Nat thought he was being asked to put them on. This, of course, made no sense to him, but that is what he does with laid out clothes. So he got upset.

In Nat’s outbursts these days, he gets upset with himself. He bites his arm and screams. He does not go after other people. He has learned not to do that. I truly believe he is biting himself out of frustration — with the event and with himself for not getting it, for not being understood, either. I can’t imagine how terrible that must feel. I remember when I was a girl and my hair was just horrible, not doing the right thing at all, I pulled and pulled it, hurting myself terribly. That kind of rage is so rare for me now. But that is where Nat goes once in a while — perhaps once every six weeks. Not bad, but still, pretty bad.

However, I am just so proud and relieved that most of the time, he manages to find the words and get some clarity or help, before becoming enraged. It takes a real man to ask for help. I bet Nat would ask for directions, too, if he were lost while driving.


Trying to find out what happened is so difficult. Last night the 8yr old started screaming. Anakin Skywalker was missing his hand. He kept pointing to his mouth in and out… So did he swallow it or spit it out????

Made him pick up his figurines (I helped) – small tote full – and he just screamed. Need to see if it was in that pile.

I finally found it – had a guess where – but geez… thank goodness he hadn't swallowed it b/c he was unimpressed to be told he'd find it in a day or 2……. 🙂

They have words… lots of them… but the challenge at times to get the right ones out….

— added by farmwifetwo on Tuesday, December 1, 2009 at 7:28 pm

There's so little insight into this seemingly impenetrable world available to those of us merely passing through it. Thanks for making yours so accessible so eloquently.

— added by NESCA, p.c. on Tuesday, December 1, 2009 at 9:14 pm

Jared communicated that he needed a little solo time on Thanksgiving, I was so proud of him.

When his frustration peaks, he will mock-bite his own arm, and he wants to make sure you see him, so I verbally acknowledge his frustration, and then I turn my back, taking the chance that he will not injure himself when he sees he's not going to get a dramatic response. For Jared, a dramatic response would just reinforce that negative behavior.
Thank goodness it's worked every time. Lisa

— added by Anonymous on Wednesday, December 2, 2009 at 11:40 am

Hi Susan!
I didn't know you had a new book out, I have to get a copy, maybe even a signed one! Nat seems to be coming along well. I really enjoyed the time I got to spend with him, and Max and Ben too.
Happy Holidays to you and your family!
Sean McLaughlin

— added by Sean McLaughlin on Wednesday, December 2, 2009 at 1:46 pm

Remembering back to when I started reading your blog and when I met Nat (at Kubi), I am blown away by his progress. Nat and you and Ned are phenomenal in what you've all accomplished! Kudos to Benji and Max too!

— added by Donna on Thursday, December 3, 2009 at 4:26 pm

Thank you, Donna!
Lisa: that is so great!!!!

— added by Susan Senator on Thursday, December 3, 2009 at 4:54 pm

This issue becomes magnified as our children reach adulthood. You lose some control over what happens to them and who they come in contact with. We hope that they find a voice, a communication outlet other than inflicting pain on themselves or others. My adult son's outbursts have also diminished over the years, but frustrations do mount and need to be released.
My plea to agencies/providers is to hire staff that is educated, compassionate, patient and positive. This can eliminate many an outburst. Jane

— added by Anonymous on Saturday, December 5, 2009 at 9:07 pm

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