Susan's Blog

Tuesday, September 30, 2014

Can you feel the love on October 11?

Family-friendly Broadway is nothing new, and its success is no surprise. But autism-friendly Broadway is a stroke of marketing genius. Billed as “judgment-free, ” these shows generally offer a stimuli-sensitive environment: low light and sound, quiet space, autism specialists available for extra support.

There have been pockets of such performances offered around the country in the last six years but Theater Development Fund’s (TDF) Autism Theatre Initiative has taken the concept to a new level. TDF has been funding overwhelmingly popular performances – most recently the Lion King — at venues like Los Angeles’ Pantages Theater and the Autism Speaks-Boston Opera House venture on October 11. The Madison Square Garden Lion King on September 28 apparently sold out in just days.

I am of course, a veteran autism mom – Nat is almost 25 – and this kind of trend is, well, music to my ears. When Nat was a child, he didn’t even get to go to school in his hometown, let alone participate in any normal after school fun. For Nat, rather than taking an art class like his brothers did, or a group music lesson, everything Nat did was  therapeutic — music therapy, art therapy. Or I had to pay big bucks for a one-to-one, which I only did for Sunday School because back then that synagogue had no special needs curriculum. I did organize an autism spectrum soccer team, but the coaches gravitated towards the less autistic teammates and left Nat in the dust. One year he was taught to tolerate wearing a costume so that he could be in the class play. Everyone could say he was being included, but was he? It just seemed so — fake.

Still, I never gave up looking for a welcoming place where Nat could really participate, like any other kid. And every now and then we did manage a family outing to a movie, with no behaviors, no outbursts, and with a lot of positive reinforcement. In the safe accepting dark of the theater we’d dole out a piece of popcorn to him every few minutes that he was quiet. Back then our goal was usually getting through things – enjoyment took a back seat. “Declare victory then get the hell out,” my husband would say.

I will readily admit that I had serious problems with being oversensitive to anyone looking at Nat cross-eyed. I have intolerance-for-Nat radar that may be highly tuned to a faulty. So I was not much help when it came to joining with organizations that offered kid experiences. Still I yearned for a time when we didn’t have to explain Nat and watch his every move and try to intercept his autism so that everyone else could enjoy their lives. I faulted society for being intolerant and clueless. But most of the time, I faulted myself for being unable to give him more of a normal life.

Wow, have things changed. Not to sound cynical, but autism is big business. And yes, many more people really care about our guys and want to help them enjoy our world. So I am cheering for the autism-friendly Lion King performances — not only because I love the show, but because of the attention and respect being given to kids like Nat. Yes, it is a separate performance, but it is the real deal. And I have made my peace with the fact that with autism, sometimes inclusion simply means having the same experience as other people.  Sure, I wish that every performance in every theater could be autism-friendly. Yes, there is still a stony part of me that is resentful of the generally autism-unfriendly world. But, hey, one step at a time. You know – Hakuna Matata.

Friday, September 19, 2014

Great News About the ABLE Act!

This article is from the Disability Scoop, by Michelle Diament. If you are a person with a disability and you have Medicaid benefits, the bipartisan ABLE Act would allow you to save up to $14,000 a year, and up to $100,000 total, rather than the current $2000 total  — and you would not lose your Medicaid benefit. You could save for a home, education, transportation…

The Stealth Mommer

I decided to be the Stealth Mommer today. I was so anxious as I drove to Nat’s workplace. But I told myself there was no need to worry, that I would not let him see me. He would not detect a blip in the Shaw’s parking lot forcefield and freak out. And why should he freak out that his mom was shopping there? Well, because it is Nat and me. We are connected by an invisible umbilical cord. That is not meant to infantilize him. It is a statement of fact, that our connection is deep and eternal. I’ve mentioned my plans to haunt him, yes? I do not plan to lie passively in some grave somewhere while he goes on trying to figure out this damned complicated world. Nor will I be a Mombie, chewing up his life. I plan to be a wisp of a presence in his soul, a memory, comforting and guiding him.

Okay, well, I don’t believe in afterlife, so that probably won’t happen. It sucks that we have to die and leave our kids to grieve and muddle through. Sucks doesn’t even begin to describe it, actually, but I don’t feel like dwelling in my saddest place today. Because I saw Nat at work.

Anyway… I planned to observe covertly. But soon after going into the store I almost bumped right into him. He was in profile, tall and sure in his navy down jacket (Yay! Warmly dressed!). He did not notice me, and went safely past me with his coworker and coach, pushing carts, smiling, talking to himself. So happy they don’t bug him about stimming. I kept watching him from afar. He went from carts to stacking the baskets. His coach was right there with him, which surprised me — I thought they were fading back a bit. But I leave that decision to them.

I then ventured closer and closer. I asked a Shaw’s worker if she knew him and she said, “Nate? Your Nate’s mom? Oh, he’s great!” I wanted to hug her. But I smiled and thanked her and left her with her table of sample cake slices. Nat had moved around to the other entrance.

I must confess that I gave in to my hovering mothering tendencies and finally let Nat see me. I stood still, 15 feet away, and removed my sunglasses. Right away he said, “Hi.” but just kept walking. I sheepishly introduced myself to the job coach. We shook hands, and she was smiling so much. She also told me how “He’s so great.”

I worried that Nat would be knocked off balance because I was there. So I said casually, “Nat, I’m shopping because I needed some food for the weekend!”

“Yes.”

“I got you brownies!”

“Yes.”

“I’ll see you soon, tonight, for supper!”

“Yes.”

I went back to my car and drove past them again, an odd trio: tall blond Nat, short round coworker, tall thin smiling coach.

I sighed with happiness over my son. This is called “nachas” in Yiddish (pronounced “nakhahs”). Nachas is a perfect way to end one’s week, seeing a so-called “disabled” young man who is a treasured employee and fellow great guy to them. Plus now I have brownies.

Sunday, September 7, 2014

Love nat

Today Nat wanted to do some Facebooking. The way we do that is I have him look at the column of all the people who are logged on at the moment — the green dots show him — and then he chooses whom to talk to. He initiates the conversation with “hi.” After the person responds, I help him by reading their response and then repeating it to him. So when they say, “Hi Nat, what are you doing today?”  I then say, “Nat, she wants to know what are you doing today. So tell her, what are you doing?” And whatever he says, I say, “Okay, so tell her that. Type that.” And then I sound out his answer for him, a sound at a time. So if he answered, “Sitting here.” I say, “S..”  and I wait. I say again, “S…” He then says, “S” and I say, “Okay, type that!”  If he does not say “S” then I go back to, “Nat, you said, ‘Sitting here.’ Type that.” And begin again.

Today he was very logy. And yet he really really wanted to do Facebook. He just had a hard time getting his info from his brain to his mouth and then to his typing finger. I had to repeat back his letters and sound things out but I never tell him what to say. Only if he says something that is completely default or echolalic, like “hi” too many times. Then I say, “Nat, you already said hi to her. Now say something else. You can tell her what you did yesterday. You can tell her what you want to eat.” Then he will answer something, like, “You went on a walk.” Or “Cereal.” So I’ll just say, “Okay! Type that!”

I always ask him the other person’s question and take whatever he says, no matter what it is, and help him shape it into a response. I coach him a sound at a time how to spell and type it. He does invented spelling, not accurate spelling. I don’t care. These are his direct thoughts.

This morning he chose his Aunt Laura to talk to. Here is the conversation, and I am beyond proud of him because he really really wanted to hang in there and talk to her.

NAT: hi

LAURA: Hi Nat!
NAT: hi

L: Where are you?
N: where here

L: at your mom and dad’s?
N: alrtan st

L: What are you doing today?
N: stay at al alrian st
go to kalton streatn

L: Did you do anything special yesterday?
N: went on wlk

L: I bet you got a treat too!
N: treat
is ceam
happy barfly jon love nat

L: Thank you so much Nat, I will tell John.  Yesterday Kim and I had cupcakes for a treat!
N: hi snaman tost cranch

L: Yum, I love that cereal, but my favorite are Lucky Charms.
N: lake charms

L: Yes. do you like them?
N: i
yes
love nat

Friday, September 5, 2014

The Heartbreaking Quiet

Nat comes home every weekend. He is quiet. Sometimes he’s “activated” as his psychopharmacologist says — I hate that. It is such an inhumane way to describe someone. He’s just active. That’s it. Activated — what’s that? It’s referring to how maybe his meds make him? No, his meds are not like that. Besides, he is practically weaned off them.

Sometimes Nat is not active at all. Sometimes he just moves from one couch to another. I can’t get away from feeling like this is something that should not be. I remember years ago, a behavioral consultant who believed in that ABA bible, “Let Me Hear Your Voice,” told us we needed to scaffold with Nat, and to chain. Lots of construction, building — and also keeping down. The eternal struggle of ABA. We’re supposed to wrestle the autism to the ground, like Secret Service agents.

So I didn’t do that. Not really. People think I’m such a good mother but I did not do that. I got tired. Depressed. Lost hope. I didn’t consistently practice the ABA. He’s almost 25 for God’s sake and I’m still beating myself up for it. I did not believe it was the way.

Was I wrong? He is so quiet. If I had believed and converted, would I be hearing his voice more?

My heart just breaks for him. How is it okay, living such a quiet life?

I did the best I could, but my best was at times anemic, tired, mediocre. And he suffers for that. He is only as engaged as I make him be. That’s what a teacher told me when he was 5. It was all up to me in the end.

It’s always up to the parents. Even Post-Refrigerator. I see that now even with Nat as an adult. It’s up to us.  From the start. The parents give birth. The parents try. The parents have to figure out that something’s wrong. The parents have to convince the doctor. The parents have to push the school system. The parents have to deal with their sadness, their incompetence. Everyone’s incompetence. And ignorance.

Then the evil of the adulthood system starts and there’s even less. Parents come to the rescue again. Parents will tell you what to do. Parents will listen. Parents write the blogs. Parents run the workshops. And write the books. I’m still writing mine, but just so you know. I’m no expert, either. I am just a mom, and not always a good one.

It’s just we humans and our beautiful, vulnerable children.