Development

Let’s Rock ‘n Roll!

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Yesterday Mike participated in his school’s Spring Musical Performance; all I can say is: who is this kid? I knew Mike had to say a sentence as part of presenting a song to the audience; many kids had similar tasks. That task tripled as the week went on, eventually having to say the lines for two of his classmates as well as his own.
This didn’t really surprise me; Mike has a large vocabulary. What surprised me though, was when the assistant musical director introduced herself to my wife and me, saying how impressed she was by how well he had done singing, dancing and speaking all week during practices.
For those who don’t know Mike, he is a ‘rock n roll’ guy; he doesn’t care for oldies, pop, dance, country or any other genre of music. He asks us to turn off the local Top 40 radio station in the car. He asks his mother to stop singing along to LMFAO. He runs out of the room if J-Lo‘s Fiat commercial is on TV, or at hits the Mute button on the remote control while plugging his ears with his fingers.
So after thanking her for the kind and complimentary words, we sat down to watch the show. The Rosemary Kennedy School is a large facility and part of Nassau BOCES, and I’ve written about them in previous posts. They put on a terrific show, often collaborating with a sister schools that have violinists, etc.  This year they did it all themselves; one of his classmates even played drums on a couple of songs.

 

Here’s an example of the show:

Mike participated in 6 songs. Six!!! It wasn’t that long ago that he would sit amongst the crowd with tissues or ear plugs in his ears, and wanted nothing more than to get off the stage.  Yesterday he was a cool customer: composed, followed cues, sang, danced and I think for the first time in a long time, really enjoyed himself.  He didn’t flinch when his classmates sang off-key or moved in a distracting manner.  He wore a corsage, and at certain parts of the show wore a top hat, sunglasses (above picture) and a cowboy hat and bandanna.  Getting him to wear props and decorations were struggles in years past.

I was truly impressed by his performance! Too bad we didn’t get to yell “Encore!”

I didn’t even mind when the parents in the row in front of me were talking while he delivered his signature “Come on America, let’s Rock n’ Roll!” punctuated with a fist pump.

Okay I was a little annoyed, but that didn’t diminish Mike great performance.

“I know exercise is important.” Science blog post from Autism Speaks

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I know exercise is important. But with all our autism-related therapies, there’s no energy left. Advice appreciated. « Autism Speaks Official Blog.

I wanted to share this with you only because I thought it was cool that Mike’s picture from Special Olympics was one of the ones chosen to be in Autism Speaks Science blog and, according to Nora Rubovitz of Autism Speaks Family Services division, his picture will also be part of the Science pamphlet that they will publish and distribute.

Mike has been a part of Helping Hands Behavioral Outreach (http://www.helpinghandschildren.com/HHBO/HHBO.pdf )for about six eyears now.  He joined their Special Olympics team last year determined to earn a gold medal.  He wound up with a silver and is participating again this year to literally ‘go for the gold’.  It is one of the few fitness-related activities that don’t require a special reward system.

Rewards can be tricky; our current one involves earning a dollar for completion of a series of tasks e.g. Mike’s morning routine consists of making his bed, getting dressed and brushing his teeth using only one verbal prompt.  Mike has taken to saving his dollars for something he wants to buy later on, like a dinosaur toy or a new DVD.  He searches the Internet and chooses; it’s funny that he has become a connoisseur, choosing Blu-Ray movies over regular DVDs.  Any way this reward system offers both instant and delayed gratification, and teaches counting and functional money skills too.  Not bad at all.

I am intrigued that Mike is learning about being rewarded intrinsically: feeling good about his performance and having a desire to improve.  Yes, he would be praised and lauded for simply participating, and the medal he earns is something I can buy at A.C. Moore for $2, but that’s not the point here.  The point is, quite simply, the unadulterated joy in seeing an autistic child interacting, competing, earning and winning like a typical child.

Winning.

Changes On The Horizon

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I started out wanting to write about changes that I’ve noticed in Mike, and how this, to me anyway, signaled a positive step forward in his journey with autism. On further reflection though, it reminds me that although he has taken some steps forward, like everyone else, he might very well encounter some obstacles along the way.

Mike is 12 and is entering puberty, and he is noticing the changes in his body. We too have noticed how he is starting to sprout pubic hair and has begun to notice girls. My wife laughed hysterically when, upon discovering said pubic hair, he exclaimed, “I’m turning into a sasquatch!!” In the past six months we have noticed that he has asked more than one ‘girl’ to kiss him, including his married after-school teacher among them. So yes, we are kind of freaking out about puberty.

Perhaps we were unglued because his two older brothers were (comparatively) less demonstrative in noticing the fairer sex upon entering puberty. Or maybe because autism did not give Mike a ‘filter’ that neurotypical children have when expressing themselves; he just says what’s on his mind. As parents of an autistic child, any verbal expression (appropriate or not) is like gold; we just want to keep hearing it. So we have begun weaving social stories about girls and kissing and appropriate behavior. Personally, I hope this works for at least a little while; I don’t think I’m ready to give Mike ‘The Talk’.

Puberty, in and of itself, may have unintended effects on his developing brain and cognitive ability. Research has shown that there is an association between fetal testosterone and autistic traits. To many in the research community, it is not simply a coincidence that a diagnosis of autism is made four times more often in boys than in girls. To this end, I worry about what effect the influx of testosterone during puberty will have on Mike. Could it ‘worsen’ his autistic traits? Could it blunt his cognitive development? Could it make him more aggressive?

These are certainly possibilities that tend to keep us up at night, but are comforted in part by knowing that Mike is learning to be empathetic, and has a degree of self-awareness. Just like noticing the physical changes in his body, he knows when he becomes angry with others, and is apologetic and often embarrassed by it. He readily takes note of babies and younger children who are crying and wants to “make them happy again.” He has initiated greeting our neighbors, and has asked to play with some of the neighborhood kids.

Big change.

Not all of change is bad per se; his verbal and comprehension skills have markedly improved in school and his brief chats with us have slowly progressed to often conversational proportions. His teacher confided that she is thinking of submitting him for consideration for a self-contained class in a General Ed school (otherwise known as a satellite program). Mike has shown he has the capacity to do more academic school work, as opposed to being vocationally-inclined only. With this thrilling possibility brings change, and change always brings the possibility of failure and regression. Mike has thrived and become transformed at his current (out of district) school for the past three years after languishing in-district as the Special Ed department struggled to develop its resources and plans. The thought of returning him to a similar setting is tempering our enthusiasm but reinforces our feeling as parents that our son has more possibilities open to him now. I have quietly begun to think that Mike is inching toward the higher-functioning end of the autism spectrum.

His desire to someday become a paleontologist/chef/zoo keeper/book writer is not so far-fetched after all. Big change indeed.

It seems Mike is poised and ready for bigger and better things, despite all the pitfalls inherent with puberty. My little boy is growing up. I hope his mom and I are ready.

I wanted to add this comment, which was left by http://www.train-n-station.com:

I thoroughly enjoyed reading your blog. Your love for your son shines through in such an enormous way. As a teacher for children on the spectrum, I have always had students in grades K-2. This year, however, I was able to keep some of my 2nd graders for another year – now third graders. Last week I was told that one of my third grade boys had taken to kissing the lunch lady on the cheek when he went through the lunch line every day. His parents had noticed that he was hugging and kissing family members on the cheek more recently as well and were pleased with this new social awareness. When I asked whether the lunch lady was upset by the innocent kiss on the cheek, I was told she thought it was very sweet. Before having the opportunity to set a plan in place for helping this child express kindness in a less intrusive way (being that kissing the lunch lady isn’t the most appropriate way to say hello), he apparently attempted a much longer kiss today and followed the attempt with giggles and batting eyes. I felt like this was a “welcome to puberty” crash test… to follow your final words…. I hope I am ready. 🙂
Danielle
via AutismSpeaks Social Network sites

Knock Knock

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I am simply amazed at how Mike has improved in social situations. Take last night for example. We went to Applebee’s to celebrate my brother-in-law’s 50th birthday; a table for 20. Applebee’s, like so many other restaurants is a busy, noisy place with big screen TVs all around and lots of clapping, happy-birthday-singing wait staff scurrying in all directions. A perfect place for a melt-down if ever there was one, and he’s had a few there in years past. I sat next to Mike, who sat next to one of his uncles; this put us near the center of this large gathering. Throughout the night Michael made many attempts to tell his newly acquired Knock-Knock Jokes:

Mike: Can I make you laugh?
Uncle Rob: Sure.
Mike: Knock knock…
Uncle Rob: Who’s there?
Mike: Jamaica
Uncle Rob: Jamaica who?
Mike: Jamaica me crazy!

Now, I know that he was surrounded by family, who know more about Autism and developmental disabilities than most, and that Mike may simply be repeating a pleasurable activity, but I see how he interacts with others, and amazed at how this compares to his lack of interaction with others just a few years ago. Fortunately or not, Mike has a younger cousin with developmental disabilities. I bring this up only to highlight in my mind and in the minds of many members of our family how far Mike has come, and it is Mike’s development that gives us and our extended family hope for the future.

He proceeded to tell this joke and another to his younger cousin as well.

Later in the evening, he accidentally spilled a glass of milk on the table, which eventually spilled on to both his brother’s and my lap. “Dad, I am so sorry. I can’t believe how clumsy I am!” His reaction and intonation were so spot on; properly emphasizing the word ‘so’. There was no anxiety, nor any withdrawal from the situattion.

I give a lot of credit to his school, the Rosemary Kennedy Center in Bellmore, NY, where he’s attended the last two and a half years, and his socialization class on Saturdays at Helping Hands Behavioral Outreach in Melville, NY where he’s been going for 5 years. Both have been instrumental in teaching and modeling appropriate behavior and have been models of consistency. Another factor which has helped him progress is his language; he is able to build upon his vocabulary. I am convinced that his ability to communicate verbally will be the only determining factor in how far he can go in school and life.

Mind you, this is only a step along the way. We still have to remind Mike to say hello and goodbye to others oftentimes, but I am confident that he’ll master those independently one day. In the meantime, when told to say goodnight at the end of the dinner, he promptly turned to the restaurant crowd, waved, and said, “Goodbye everyone!”

The kid knows how to make an exit and an impression.

This is a re-post; it was published previously on the AutismSpeaks Social Network site.