About 1andOnlyJustEd

I am a husband and proud father of three boys, with our youngest diagnosed with Autism. I am an advocate for awareness, understanding and support. I have a Medical background as a former EMT and Paramedic, and currently I am a Physician Assistant with New York State Office of People With Developmental Disabilities. The views expressed here are mine alone, and should not be associated with my employer or any other individual. I am on Twitter @1andOnlyJustEd, on facebook.com/edeustaquio and Autism Speaks Social Network www.autismspeaksnetwork.ning.com/Ebrothers. I strongly encourage the 5 E's of Autism Awareness: EMBRACE-ENGAGE-ENABLE-EXPAND-EXPRESS
Author Archive | 1andOnlyJustEd

Knock knock

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.

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Changes On The Horizon

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.

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Autism: Front and Center

Mike book drawingWe went to the Friday evening show of The Dinosaur Petting Zoo at the Tilles Center last week. We had to get their early to pick up our tickets for the general admission show; showing up at 4pm for a 5pm show. When other families started arriving, my wife’s first comment was “uh oh, it’s a little kid’s show”. Indeed, the overwhelming majority of children showing up for this puppet show were under 8 years old. Mike, our youngest of three and bona fide paleontologist-in-training, is 12 years old.

As if we didn’t have anything else to worry about with a child with Autism, having a child who literally towers over other children in a public venue is akin to putting a sign on his chest that screams “Look at me! I am different!” As much as parents with Autistic children will attest that they have developed thick skins, we yearn for times when our children blend in, if only for a scant minute or two. We are in fact okay with, and often celebrate our children’s unique traits and abilities, but are achingly aware of the public stigma of Autism.

Mike, as anyone who has ever met him will attest, knows everything there is to know about dinosaurs in general, and T-Rexes in particular. His room could be converted to a Jurassic Park gift shop if we ever needed a second income. His dinosaur-related DVD collection is better than most libraries. He knows how to find dinosaur toys, books, pictures and memorabilia on eBay, Amazon, Google, and lesser known websites. He has re-drawn the pages of a pirate book (“Captain Flinn and The Pirate Dinosaurs”) and replaced the human characters with his dinosaur toy friends (they each have a name, of course) with elaborate detail.

dinosaur petting zooYou get the idea.

So we progress through the show, which ends with a volunteer from the audience being asked to the center of the stage. None of the ‘little kids’ want to come up; some take a step forward, but quickly run back to their moms and dads. There are three; perhaps four kids in Mike’s age group in the audience that still hesitate at what might be in store up on stage. Mike has his hand raised patiently, waiting and hoping to be picked. His eyes never waver from the emcee. There is no fear, nor trepidation; no anxiety which often destroys the public outings of many families affected by Autism. For that brief instant, he stood out in ways those other children could only aspire to: he was without fear, and for that, he blended right in with them as they screamed with glee.

As much as dinosaurs (and to a lesser extent, crocodiles and other toothy animals) are a major focus for Mike, he is progressing; becoming more conversational, empathetic, and academic. For this we thank the tireless work of his teachers, and his brothers, and everyone who has connected with him. This outing also taught my wife and me that Mike will continue to teach us things about ourselves, and we can’t wait for more of those lessons.

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