Susan's Blog

Wednesday, April 30, 2014


My day suddenly became very dark when I got the call: “Nat’s had an incident.” This was yesterday. He was at his most anxious, and we did not know why. He was biting himself. Yelling, stomping. Punched a wall, apparently. He had to leave the store he was in. No, Nat, no! I moaned in my head. Not after all your hard work.

Nat is 24 and has autism, alleged developmental delay, possible sensory issues, suspected processing disorders, really a whole smorgasbord of challenges and disabilities. He also has a keen eye for detail, an open mind, and he’s very, very beautiful. That’s neither here nor there, but I mention it because I hate giving a whole dirty laundry list of his troubles and casting him in that light, when truly, Nat shines in a light all his own.  Autism has been called a kidnaper, a scourge, a monster-creater, but the real truth about it is, the worst thing about autism is that it casts a very long shadow. People see it, and not the person.

But here’s something interesting: shadow isn’t a bad thing. Shadow just is. It exists because of light. Shadow and light together help us see something. But when Nat’s behavior is inexplicable and aggressive, I feel like he disappears inside the shadow and I can’t see him. I forget that shadow is a part of everything. Light needs dark. Yin + Yang. Chiaroscuro.

Ned and I took phone call after phone call from Nat’s group home manager, into the night, to let us know that Nat was not himself, that he was getting out of bed, obsessing about other people’s routines. We all slept badly. The night was long and full of terrors, as Melisandre would say. Morning came, and so did another call. The word was, Nat was not “stable enough” to go to his day program. This had never happened before, in two years.  What was it, Nat? Please, don’t go back to those days when you were 17 and biting, jumping, screaming! I didn’t even know what it was about then.

But I heard from the autism community a long time ago that we need to check these “behaviors” out. We should always get our children examined when they “act out” and be absolutely sure they are not sick. Thank goodness others know that, even if I cower under the covers and shudder that “It’s Baaaack.”

Here and there we’d been hearing from the house manager and also maybe it was the day hab director that they had asked Nat if he was feeling sick he’d said, “froat.”Naturally, I was skeptical. Because whenever Nat is asked about his health, he just seems to say what he thinks you want to hear. I always tell medical professionals that he is unreliable that way, inaccurate. Still, I take him. Of course I do.

The house manager told us this morning that he was taking Nat to the doctor, and did I want to come? Within a few minutes, I had taken over. Ned and I were going to take Nat out to Starbux and then to the doctor myself. We got to Starbux and sat on one of those bench tables, right near two women who were deep in conversation. Nat chewed his chocolate chocolate cookie and I sipped my creamy drink. Ned had a smoothie.

Nat seemed really calm. He wanted to see the doctor, that was clear. He knew that after that he was going to lunch with me and to rest for the day. An easy day. I could feel that he was soft. I felt that the crisis might be over, that this might indeed be that he was sick. Later on we would learn that he did indeed have strep. Good for you, Nat, for telling us all. I will never doubt him again. He had been getting sick, and he’d been very uncomfortable, and he had acted it. His behavior was perfectly natural, given the circumstances. But even before the affirmation from the positive strep test, I knew that “It” wasn’t Back. He was back. He’d never gone. He’d just retreated into the shadows while he was sick, like we all do.

Looking down at his cookie, he put his hand through his hair and ruffled it. I absentmindedly reached out and straightened it. The woman next to me suddenly said, “He’s got great hair.”

“Oh, thanks,” I said. I often say thank you for Nat. The woman continued, “People pay a lot for color like that, but still it never comes out like that.” I smiled. The thing that struck me was that she was talking to me. Not Nat. The way people do when they realize that he wasn’t able to respond. She knew, somehow.

I looked at Nat. His hair, thick, soft and golden like a chick’s feathers.  “Really, he’s beautiful.” The woman was just smiling at him, all googly-eyed.

“He’s lucky to have been born that way,” she said.  Ned and I grinned at each other and basked in the light of our son.







Friday, April 11, 2014

Electric Shock is Never An Educational Approach

Here is an issue that most of us can probably agree on: NO MORE ELECTRIC SHOCK for “treating” autism! I have written several times about the Judge Rotenberg Center, not 30 minutes away from me, and there they are infamous for their “method” of addressing “problem behaviors.” (Air quotes galore, because JRC is a sham.)

Once again, there is no behavior that justifies this. If you think you need to resort to electric shock, which has been outlawed by The United Nations Special Rapporteur on Torture. If we are forbidden by the nation — and virtually the world — to use electric shock as punishment or for “instructive” purposes, then how in God’s green earth can anyone justify using this barbaric method on a student? On anyone? Where’s the uproar? Where’s the outrage?

When I think of my darling Nat — and how he’s had to fight first to understand this sensory-insane world, how to deal with it, and finally, how to make his way in it successfully — I could just cry, to imagine a person like him being shocked, being hurt, abused, any of that. It makes me nauseated to my core. It brings up rumblings of hatred in me.

What does it do inside those students?

Below is the latest call for submissions, from the Autistic Self-Advocacy Network (ASAN). Click on this tiny image to read it.

We have until Monday April 14 to submit opinion here.

Screenshot 2014-04-11 11.20.27

Tuesday, April 1, 2014

Really? Autism Awareness Month?

Right, right. April first. How fitting that it is Autism Awareness Month begins on April Fool’s Day. Why do I say this? Because we claim to want or to have awareness but we are fooling ourselves. What are we aware of? What are we supposed to be aware of? That people with autism exist and struggle? Autism Awareness makes no sense to me anymore. Unless you live in a cave, you’re aware. But do you get it?

I’m aware. Oh yes, I’m aware. I’m aware that there are more and more parents like me who do not know how to plan longterm for their transitioning/adult autistic family member. I’m aware that the Spectrum is broader but funding is shrinking. I’m aware that caregivers get little to no training. I’m aware that teachers are overwhelmed and that they may not know how to accommodate different learning styles, yet the world is becoming more competitive economically. I’m aware that only a small percentage of people with intellectual disabilities work. I’m aware that I love Nat crazy deep but I still am never sure if I’m doing right by him. I’m aware that society has so far to go. And so do I. Yeah, pretty much Aware.

Nat wins the gold in the 25 meter relay

Nat wins the gold in the 25 meter relay


Ben, Nat, and Max sat.

Ben, Nat, and Max sat.

77065_450658450755_547480755_5899117_3692125_n Me and Nat at WDW!! 20130513_134328 copy 2013-01-05 18.34.10