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.








Fantastic Susan

As you know “all” behavior with our children is communication. That’s what the people around the person need to know understand and practice. What’s behind it all. Anyway great for Nat and thanks for sharing

— added by Ed Bielecki on Wednesday, April 30, 2014 at 10:18 pm

I am a big fan of the art technique, Chiaroscuro. I see a lot of spirituality in it. I also decorate my house with it in mind, (light against dark). I like the contrast.
Again, as your new friend, and one who has yet to meet you face to face, at first we seem to be very different people…our religion, our political values, but really we are not. We are more alike than different.
I am going through issues of my own with my 24 year old autistic son as well. I can’t discuss it here, but there is some (real regression) in our case. I’m trying to discern what the h— is going on. Sometimes the cross is too heavy to carry for so long a time. On the bright side, he completed a 1/2 marathon a few weeks ago. BTW, 13 miles in my opinion, isn’t half of anything. He took third place and ran faster than some of the cross country runners at the local college. He just doesn’t realize how great he is. If we ever get to the point of his self-acceptance, I know we will have arrived…maybe not at the the ultimate finish, but at least a pinnacle.

— added by Susan Anderson on Thursday, May 1, 2014 at 8:05 am

Susan: <3

— added by Susan Senator on Thursday, May 1, 2014 at 8:44 am

Awesome that Nat told you his throat hurt. Those little pieces are so important. Any out of the ordinary behavior may be illness or injury that our guys just can’t clearly articulate. Amazing that he is able to say “froat” and not just repeat the question. “My” little girl, whom I have worked with in her home for 6 years, recently started to be able to say “ear” when her ears hurt and “dentist” when her tooth hurt. GIGANTIC!!!!!! And she would respond the way Nat did, if we hadn’t recognized what was wrong. So so proud of these amazing kids.

— added by Michele on Monday, May 5, 2014 at 8:05 pm