December 4, 2014

Jerry Seinfeld and Autism

Posted in AMT's Faves, Fun Stuff, My Take on Autism tagged , , , , at 2:40 pm by autismmommytherapist

Recently on NBC nightly news actor/comedian Jerry Seinfeld shared with the world that he believes he might have autism. During the course of the interview he said:

“I think on a very drawn-out scale, I think I’m on the spectrum,” said Seinfeld. “Basic social engagement is really a struggle. I’m very literal, when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as– as dysfunctional. I just think of it as an alternate mindset.”

– NBC Nightly News

Reactions to his revelation ranged from parents welcoming him to the community to parents saying their children have “real autism,” and that the star does not have it and is actually insulting the community.

As with almost everything related to this disorder, parents’ feelings regarding his disclosure fall on a very wide spectrum too.

I am the mother of two autistic children. One is very mildly on the spectrum, is mainstreamed, engages in after-school activities, yet still has his challenges that we try to mitigate every day. My other son is severely affected, has just begun to speak at eleven, will never live independently, and has his own very set of challenges we also attempt to conquer daily. When I approach any controversy within our community I keep both of my children’s needs in mind, continually look at things from two very different angles.

And while I personally get the angst behind any parent’s cry of “don’t forget my severely autistic kid,” because, well, I have one, I choose not to believe that Mr. Seinfeld’s disclosure will lead to less funding and services for Justin. I just do not believe in today’s day and age, with every single person I meet having some connection no matter how tenuous to a child or an adult with autism, that people will extrapolate that from this interview that every autistic individual will grow up to support himself in a fashion for which we can all be envious, so stop those donations to various autism organizations. I don’t buy it. Truthfully, I can only view his admission as a positive thing for several reasons, and one in particular.

I love that he views himself as not being dysfunctional, but instead as having an alternate mindset.

Do I wish my sons didn’t have to struggle so much on a daily basis? Absolutely. Will I forever regret that my eldest won’t be able to support himself after his father and I are dead, that fear of what will happen to him will be my last living thought before I go to the great beyond? You bet. Do I consider raising two kids on the spectrum to warrant extreme parenting measures?

Yup. Almost every single day.

And yet, there is this. That when I am able to shunt aside my very real fears and dwell in the here and now I make this discovery. That with even a severe case of autism comes some gifts. My husband and I, after many years of struggles with our eldest child, often joke that he is the happiest one in our household. And while my youngest has his challenges too, his particular world view stuns me frequently with his perceptiveness, and I truly believe it will benefit him as an adult.

The truth is, when I’m able to see this as an alternate way of thinking, like Mr. Seinfeld alludes to, I am far more able to see my boys as they really are for the most part- brave, happy, and contributing to the world at large in their own very unique fashion.

I for one want to welcome Mr. Seinfeld to our corner of the planet, whether he’s officially on the spectrum or simply has some of its traits. I hope he continues to speak out about it, which will only help raise awareness, which hopefully results in not just acceptance, but a celebration of what the autistic community has to offer.

Because frankly, those alternative mindsets have a great deal to offer all of us.
So welcome Jerry. And please know I recall Seinfeld’s “Master of my Domain” episode more frequently than I’ll ever admit.

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January 19, 2011

A League of His Own

Posted in Life's Little Moments tagged , , , , , , , , , at 9:13 pm by autismmommytherapist

I don’t wallow well.

Sure, there were moments of despair after Lost went off the air (they were dead most of the season, HOW COULD I NOT HAVE KNOWN???). I still haven’t gotten over Shakespeare in Love stealing the Academy Award from Saving Private Ryan (the Weinsteins’ campaign ROBBED you Steven Spielberg, for shame, FOR SHAME!!!). I’ll never understand why Kris Allen beat the fabulous Adam Lambert for the American Idol title in season eight, but I’ve been able to reconcile myself to that finale with the knowledge that coming in second has probably been beneficial to his career. Despite the tragic nature of these outcomes, I’ve tried my best to put all these losses behind me, and move on with my life.

After all, I have children. I owe it to them.

I admit, I had to remind myself just how strong I’ve been over the years, particularly following the “Justin after-care debacle”. I’d spent roughly half my free time putting this opportunity together for him for the better part of the fall, and I’d had a great deal of hope that some kind of peer relationship would eventually result from it for my eldest son. When it became apparent after the first day this activity wasn’t going to work for Justin (the half hour of sobbing prior to my arrival to pick him up was a dead giveaway), I will share that I was fairly upset for a few days. Frankly, there aren’t a whole lot of options for friendship for moderately autistic youth (google it, I dare you), and I had invested myself emotionally in the potential for a positive outcome.

Finally, later in the week, after a few long hours sulking on my couch, I eventually came up with a plan. It wouldn’t involve interaction with neurotypical peers, but it would place him around other children, and the central tenet of the event revolved around something Justin had come to enjoy. Plus, it would get me out of the house, where I might actually engage in conversations with people outside of the realm of cyberspace. I know. I have wild, extravagant dreams.

It was clear to me what the solution would be. Justin would be joining our local special needs bowling league.

I should preface this statement with letting you know that unlike the after-care program, I had absolutely no expectations going into this Saturday morning activity. This particular league is open to children and adults with a wide range of disabilities, some of whom I’d witnessed at other events, many of whom appeared much more evolved at taking turns and waiting patiently than my son. He’s made vast improvements in this area over the years (mostly due to having to share with his younger brother, not to any brilliant interventions on my part), but he still has a long way to go. I knew this was a popular activity amongst the disabled crowd, but since there were a lot of lanes at this particular venue I was hopeful he’d only have to share his with one other child at best. I figured we could at least pull one entire game off after all the wonderful experiences we’d had with the fabulous Miss M.

We arrived just in time, and I almost had to body block Justin to get him to stay still long enough for me to collect his felt foot apparel. It was obvious where we needed to go, as I looked down the length of the alley and saw a few dozen children and parents congregating around what looked like only two lanes. I swooped up Justin’s shoes and we received our lane assignment, and I subsequently realized how much I require lasix surgery as it became clear the league had commanded a half-dozen of them. We trudged over, boy and goody bag securely in my hands, and I was fortunately able to find him an empty swivel chair. I introduced us to the nearest parent, and glanced up at the electronic board regaling us with its list of participants.

On this lane alone, there were six. I was relieved I’d remembered to bring Tylenol.

To Justin’s credit, he did as well as humanly possible. I plied him with snacks and favored DVDs as he waited his turn fairly patiently, only slipping his shoes off once during the course of the game. I even managed to converse for three minutes with a lovely woman whose sons were so mildly autistic their form of the disorder bore absolutely no resemblance whatsoever to the subtype my son possesses (and they were FABULOUS at waiting). We made it through the majority of the game, but I could sense my son’s angst building, and I’ve resolved never to leave an activity on a bad note, thus reinforcing the connection between whining and exiting.

Just call it my life’s work.

We packed up to leave, and I had to fend off the protests of the kind woman I’d met who was dismayed when I told her we wouldn’t be returning, as she pointed out that Justin had really done well. He had, and I thanked her for the compliment, but that wasn’t the point. The truth was, he hadn’t had a good time, and as much as I enjoy meeting new people, this wasn’t (sadly) supposed to be about me. It turns out that bowling is one of three activities outside of movies and computer games that seem to entertain my child, and it simply has to remain fun for him. Despite the opportunity to talk to someone other than my husband, and perhaps score some sour cream and onion potato chips from the vending machine, this is not the correct venue for him to participate in this activity.

We exited the alley, Justin thrilled to be on the move, and me saying goodbye to a number of wonderful people in our community I’ve had the good fortune to come to know. He was bouncing up and down for joy, and for once my mind was clear, already on to the next event, which would be how to keep the moderately autistic child happily occupied until we left for his horseback riding lesson in the afternoon. I realized I wasn’t the slightest bit depressed about our “failure”, and that I’d already come up with a slight adaptation on this theme. We’d be coming back here as a family, claiming one entire lane as our own uncharted territory, with my boys taking turns and hopefully, in their own ways, cheering each other on to victory. I slipped Justin into his harness, settled myself into my frigid front seat, and smiled as I turned the ignition key, because once again I had a plan.

And although Jerry Seinfeld says “there’s no such thing as family fun”, we’re going to give it a try.