Susan's Blog

Friday, July 11, 2014

Loving Nat

Loving Nat — The Jewish Advocate, July 11, 2014

My day suddenly became very dark when I got the call: “Nat’s had an incident.”

This happened when he was at his most anxious, and we did not know why. He was biting himself. Yelling, stomping. He’d 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 kidnapper, a scourge, a monster-creator. But the real truth about it – 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 and yang. Chiaroscuro.

For the first time in a long while, I prayed. My way of praying is not in Hebrew. I kind of just talk to G-d. I try to connect with Him, just like I do with Nat. I think of G-d as a person who knows so much, but I don’t know what he knows. Perhaps G-d has His own brand of autism: He’s all there, but it takes a lot to feel that you are communicating effectively. And also, I feel love for G-d, without question. It just is, like my love for my children.

I did what I could in my fashion of praying for Nat to come out of this dark moment. I talked until I felt done. Then real life took over again, as we got a 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.

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 with the thought, “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.” I was skeptical; 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? Did I want to come! Within a few minutes, I had taken over. First we’d take Nat out for a treat – to Starbucks – and then to the doctor. We got to Starbucks 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 strangely calm. He wanted to see the doctor – that was clear. His spirit seemed soft once more. I hoped that the crisis might be over, that it was an aberration, all because he was sick. Later on we would learn that he did indeed have strep throat. 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. I looked at Nat. His hair, thick, soft and golden like a chick’s feathers.

“Really, he’s beautiful,” the woman said. “He’s lucky to have been born that way,” she said.

And as I sat there, basking in my son’s light, I kind of felt like, yeah, it is definitely worth it, trying to connect with someone you love – whether it is your child, or even G-d.



— added by Shelly Senator on Friday, July 11, 2014 at 9:51 pm

I’m so glad you ironed it out! Charlie was acting out. Then I noticed voice changes and bullseye rashes — 3 of them. Lyme disease. Sore throat and painful rashes the size of dinner plates.

He’s more himself now that he’s on a strong course of antibiotics.

We really have to investigate these behaviors because when we get pissed off, we can tell it’s PMS or a headache, but they can’t tell us.

Good Mamma! And thank goodness for your Abba Father.

— added by JanB on Saturday, July 12, 2014 at 12:41 am

Lovely Susan, absolutely lovely. Hope he feels better soon!

— added by kim mccafferty on Monday, July 21, 2014 at 11:12 am


I read your blog off and on. I came back to it today and I thank you. My son, Ben, moved in residential at Melmark July 15. I did this for skill acquistion, I am a single mom of 3, have neglected my daughters, have been going to grad school with all 3 and working and saw I would not be able to complete it with Ben home, have experienced home services falling apart with staff coming and going. My son is adjustig well. I miss him. I miss his light, I miss having it as much in eacg of my days, everyday. My son is 13. He is nonverbal.

— added by Stephanie on Monday, August 4, 2014 at 9:47 am

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