Posted in Autism, Down syndrome

Blog #108~ Seinfeld Thinks He Has Autism

Blog #108~ Seinfeld Thinks He Has Autism

So Jerry Seinfeld thinks he might be on the autism spectrum. This story aired last week:

In his sit-down with Brian Williams, Seinfeld said, “I think in a very drawn-out scale, I think I’m on the spectrum.” The comedian added, “You’re never paying attention to the right things. 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,” Seinfeld said. “I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

Jerry Seinfeld

Since this interview aired there has been an outpouring of criticism from the autism community.  Many parents who are in the trenches battling autism are up in arms, and with good reason.  They are dealing with their child having debilitating seizures, sleep deprivation, health issues and violent meltdowns. They face the reality that their child will never talk, drive, date, get a job, live on their own or get married. It diminishes what families go through and they find it insulting to their children’s diagnosis.  Countless families are fighting to get services and funding for to take care of their child.  Amongst all this, they are cleaning up poop smear accidents.

poop icon

Here is a statement from Wendy Fournier, President of the National Autism Association:

What frightens me with these kinds of statements and stories is that I don’t want people to think that autism isn’t a serious diagnosis, or that it’s not a struggle for individuals and their families. What many people don’t understand is that on that lower-functioning end of the spectrum, we have individuals who are suffering and whose lives are at risk.” “Autism is not a designer diagnosis,” Fournier added.

Let me throw in my two cents here. My son, Nick is 20 years old and has a dual diagnosis of Down syndrome and autism.  His speech is very limited; he will never drive a car, date or get married and live on his own.  He requires supervision 24/7.  Oh and yes, I’ve cleaned up my fair share of $h*t storm accidents.

The only thing that Nick and Jerry Seinfeld have in common is that they are both incredibly funny guys.

All Aboard Diner 4-23-10 006

I am a huge Seinfeld fan, and I’m not going to boycott his shows because he made these comments without a formal diagnosis. He has the right to how he feels and share his journey of self-discovery.  But, I disagree with Seinfeld saying, “I don’t see it as dysfunctional, I just think of it as an alternate mindset.” He is suggesting that it’s just a different way of thinking, rather than a disorder.  Well, autism is a disorder!

I fear that society and government policymakers will disregard the seriousness of autism spectrum disorder (ASD).  The media is so quick to shine a light on the positive stories of autism, especially when a celebrity is involved.  That’s great, I’m all for any media attention to raise awareness. I hope Jerry continues to use his celebrity status to help advocate for more funding and services towards autism.  But society needs to see the other side of the spectrum and what families deal with on the front lines of the combat zone.  Maybe next week, I’ll write about one of those bloody battles I’ve had with Nick.  That’s what is in my noggin this week.


Posted in Autism, Behavior/ ABA

Blog #50~Up, Down and Somewhere in Between

Blog #50~ Up, Down and Somewhere in Between

Life has its ups and downs like a roller coaster. The highs from a peak adrenaline rush don’t last forever. What goes up must come down. Then there are those periods of in between. Over the weekend we attended the National Down Syndrome Association (NADS) Behavior Retreat. This is unique group of kindred spirits all which have children with Down syndrome and autism. This support group always divulges uncanny stories that are frighteningly similar. Some are on a high, others are on a low and a few are somewhere in between.

The retreat opens with sharing of stories. The first was a success story of a boy the same age as Nick. He is navigating his schedule independently using his iPad and a scheduler app. The next mom had poured out tears last year. At that time her son plopped down outside in a busy parking lot. She physically couldn’t get him to move. We call that the “stop, drop and plop.” This year she said they were in a honeymoon period experiencing much success and growth with their son. Another parent was struggling with many things. Her son was now a one man wrecking crew. He’s on a dumping rampage like Nick.  The only pictures she had were up on the high shelves in her home.  He found a way to hurl objects way up on the shelves and successfully knock down the last remaining picture frames. Why? He likes to stare into the frame because it’s reflective. His sensory need was desperately craving shiny objects. Crafty little guy. 😉

Nick likes reflective objects too…..

photo (112)
The gal next to me was on a high. She had grasped the Holy Grail. Her child was finally potty trained. The group broke out clapping and cheering. This is no easy feat with our kids. Al and I spoke next. Right now we are somewhere in between. Nothing horrible is going on with Nick. Yes, he is still pushing the microwave and phone intercom buttons. The water faucets  run full blast from time to time. He’s still dumping and dropping things. On the flip side, his meltdowns have been minimal and he hasn’t pulled a fire alarm in a while.

Nick’s last alarm pull was at this retreat six months ago, that was #27….

While these things are bad, I don’t see it as unmanageable right now. I know what rock bottom looks like. We hit it hard while he was going through puberty. This ride is wild and often met by hitting a breaking point. We came close. Over the years during these retreats, some families had to come to the realization that the support at home just wasn’t enough. You can see the pain in their eyes. You can tell by the body language as they sit with their arms crossed wound up tight as a ball of yarn. You can feel it as they speak of their hopelessness and guilt with tears flooding their down their faces.

At some point we as parents have to make the difficult decision to put our kids into a group home. Over the years many families expressed their relief of having done so and reported that their child not only adjusted but thrived. It’s a personal decision. I am guessing that when the time and situation is right, you will know it.

Listening to all the stories got me thinking that it’s like that Seinfeld episode with the coffee table book….

Seinfeld coffee table book
George who had no job and living with his parents adopts a new mantra, to do everything the exact opposite. Elaine is up, landing the job at Pendant Publishing but then things come crashing down. Damn those Jujyfruits. 😉

Seinfeld Jujyfruits
Meanwhile, Jerry loses a stand-up gig and five minutes later is asked to perform another one on the same night. This prompts Kramer to call him “*Even-Steven”. This causes Jerry to start noticing how everything always ends up turning out exactly the same for him as originally planned, never losing or gaining. By the end of the episode, Elaine claims that she has “become George,” but Jerry marvels at how things always even out for him: first, Elaine was up and George was down; now, George is up and Elaine is down, but Jerry’s life is exactly the same.

Seinfeld cast
Besides the successes and war stories, the retreat offered some great information. Toni Van Laarhoven, an Associate Professor from Northern Illinois University gave  a fantastic presentation. We learned about using video modeling to teach new skills and behaviors. I can testify this works. Check the April 2012 archives for my story on this in Blog#5~ Ready, Set, Action. Toni also provided some helpful information regarding behavior problems. Stay tuned for more on this in the next two weeks.

In life sometimes you are up, other times down, and sometimes in between. I am okay with being “Jerry” right now. I’ll take even-steven. I think TODAY, most of us would.
tax day
That’s what is in my noggin this week and don’t forget to ask for those tax day specials! AMC (free popcorn), Sonic, Arby’s, Cinnabon and many other businesses are offering some sweet deals today. 🙂

*even- steven: According to it means exactly equal; also, with nothing due or owed on either side. For example, I’ve paid it all back, so now we’re even-steven. This rhyming phrase is used as an intensive for even. Random states that the noun steuen/steven originally meant ‘a time or place’, but later took on the meaning of ‘a condition, situation, or circumstance’. So the phrases set steven and even-steven both meant ‘settled circumstances; settled accounts’.