Thursday, October 15, 2015

Autism Educational Series—Multiple Children on the Spectrum, Part 2—"A is for Awesome, and Autism"

Jessica Szucki is an autism mom, a blogger, a fundraiser, a baker, a photographer, a music enthusiast, a lover of sarcasm and movie quotes, and a Canadian. She lives and loves in Windsor, Ontario with her husband Greg and three boys, Dryden, Cooper, and Lennon.  Jessica is an avid advocate and fundraiser.  She organizes a yearly t-shirt campaign, designing shirts and sweaters, selling them, and donating the proceeds to The Summit Centre for Preschool Children with Autism, which Dryden and Cooper both attend.  The campaign culminates in an Autism Awareness Day which features the World's Largest Human Puzzle Piece.  In her "spare time" she also runs iPads for Autism, a local charity designed to help get free iPads in to the hands of children with autism.  You can follow Jessica's regular writings on her Facebook blog, A is for Awesome...  And Autism.

....There I was in the same room where Dryden had been diagnosed,  not knowing fully what to expect, holding my baby—by this time Lennon, my third, was about nine months old.  My husband and my resource consultant were by my side to help with the baby, if need be, and to provide insights into the questions about Cooper.

We finished the activities and the parent interview and waited for the doctor to score the results.  I wandered the halls of the centre not knowing what she was going to tell us.  It was actually like a coin flip for me—it could go either way.  I felt like Cooper had done well on the testing but I also felt like he had shown some signs.  I had no idea which way it would go.  Mild, high functioning autism, on the Asperger's end of the scale—that was my best guess.

"Moderate to severe autism."  The words floored me.  That was the same diagnosis as Dryden.  Cooper was nothing like Dryden. And he was two and a half!  How had I not seen it sooner?!

I beat myself up over that one for a while.  I was embarrassed that I hadn't spotted it.  I got over that one when I reminded myself that our whole team of experts was convinced that Coop didn't have autism, that six months prior, the psychologist had told me that she was 90% sure that he didn't have autism. If the pro who's been doing this since I was born couldn't see it, I couldn't be expected to, either. The signs seemed to come on so fast.

Our family and friends were shocked, and I lost track of the number of times I heard "Are you sure? He doesn't seem like it to me," and "I'm sure it's nothing; he'll outgrow it."  But my favorite?  "Oh, I'm sure he doesn't have autism, he's just mimicking Dryden."

Here's the thing with that.

Their signs and symptoms are so wildly different that to this day I question how their diagnoses are so close. There is no mimicking going on.

Dryden has never had a meltdown in his life. Never a tantrum.  I have *NEVER* in his four-plus years seen him angry.  I am not exaggerating—it just doesn't happen. He is super laid back, transitions easily, requires no routine, and is just calm all the time.  When he does cry, it's rare—about once a month—and it's heartbreakingly sad. He wails and babbles and drools for a little while, about 15 minutes, and then usually goes to sleep for the night. Cooper has meltdowns, sometimes not for days, but sometimes several in a day. He screams, and he's loud.  He snots and spits and tears run down the whole front of him, but he's mad about it.  It's a whole different kind of heartbreaking. He's also a LOT more active and wired and bounces off the walls a lot more—he has more of a need to move, jump, flip, and run.

Dryden will only eat pureed foods. There are only about six foods that he will eat. In the world. Up until recently, he would gag when he saw us eating food that had any texture. Cooper, on the other hand, eats nuggets and hot dogs and crackers and hash browns and lots of other finger foods—nothing pureed or soft.  And he, until recently, would gag when seeing Dryden eat puree.  Polar opposites.

Dryden stims by flipping lights on and off, squinting in to the lights, and some verbal sounds that he makes. I've never seen Cooper stim. No flapping, no spinning, no visual or verbal stims.

Dryden is almost entirely non-verbal. He has started repeating some phrases with prompting and will occasionally make a spontaneous request for a really preferred item—usually milk, or tickles. Over the last few months Cooper has exploded verbally. He sings songs, quotes TV shows, greets and recognizes familiar people, and more. He's doing great. This morning I sneezed and he said "Bless you."  Out of nowhere.

Dryden prefers to hang out by himself. He doesn't mind snuggling and he isn't resistant to touch, and occasionally will even initiate cuddles. For the most part, though, he's fine to play in his room by himself and sit in the corner with his blocks or a book, and I often have to work at keeping his attention, keeping him on the same level of the house as the rest of us, keeping him engaged.  Cooper? Coop's a social beast. He goes out of his way to get your attention, and to keep it as long as possible. He will climb up on the couch beside me, wrap my arm around him, snuggle in tight and say, "Hi, Mommy!"

And my heart melts. Every. Single. Time.

The list goes on and on. So when someone tells me that Cooper is just mimicking Dryden, you can see why that makes me crazy. He definitely has autism. When someone asks me, "Are you sure?" I like to reply, "Not all the time, but the experts who diagnosed him, they're sure."

There's a lot of trial and error in finding what works. What worked for Dryden doesn't always, or often, work for Cooper. We have different routines and different methods for teaching each boy. It is definitely a challenge to add so many extra steps and routines and we prepare three dinners every night. One for Dryden, one for Cooper, one for Lennon and us. There's a lot of extra materials involved. For example, the only sippy cup Dryden will use, Cooper won't touch, and vice versa. So we have a lot of items that seems like repeats to the untrained eye, but are different brands or models for each of the boys. But it's worth it. Finding a breakthrough that helps one boy gives us a jumping off point to start working with the other, and we tweak things from there. I've learned a lot about different methods and techniques.

As it stands right now, Dryden and Cooper are both in full-time therapy at a great centre. They get one-on-one care and teaching all day long. They're both making great strides, at their own paces.  They are very different from each other in so many ways, but occasionally it becomes obvious that they are brothers. Their giggles and smiles are similar, some of their mannerisms make me do a double take. 

And Lennon is now under the same care that Cooper was as a baby. The team helps me keep an eye on him, they engage him, interact with him, and they point out the cool things that he's doing on time and ahead of schedule. And if there comes a time where we are concerned, they will set us up. I remind myself regularly that it is what it is. I can't change it, I can only accept it and make the best of it. And no matter what the diagnoses say, I know that I'm raising three of the coolest little boys that the world has ever seen, and they make my life amazing every day.


  1. Thanks Jessica. Thought-provoking, articulate and full of such amazing detail about your experiences with your amazing boys. As always, your perspective will be so helpful for my students. Marcia

  2. Thanks for your comment, Marcia! Her posts were very informative!