Thursday, October 15, 2015

Autism Educational Series—Multiple Children on the Spectrum, Part 1—"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.

Dryden is four.  Cooper turned three on October 12th.  They both have moderate to severe autism, but their stories are very different.   Today I want to delve a little bit in to what it's like to raise two boys who are completely opposites in almost every way, but carry the exact same diagnosis.

Dryden was diagnosed with ASD at 19 months old, in January of 2013.  From the time he was 15 months old I suspected that there was something different about him.  He wasn't pointing, didn't often respond to his name, only made eye contact if he wanted to, and though he babbled a lot, he didn't have any words.  He would occasionally say "mamamamama" but he wasn't calling me Mama, he was just making noise.  He liked to play by himself, was happy to sit in his jumper for an hour at a time if I'd let him, and he looked at lights in funny ways.

I just thought he was a funny little guy, a late talker, doing things on his own terms.  I didn't know much about children and I knew absolutely nothing about autism.

The first time autism crossed my mind, I looked it up, and my heart sank at the red flags.  Going down the page was like reading my grocery list at the till - check, check, check.   I could tell you ten reasons that I didn't think Dryden had autism, but I could tell you 15 reasons why I thought he might.

At the time, I was almost eight months pregnant with Cooper.  I was so scared.  What if I had a special needs child, and a newborn?  The thought was overwhelming.

By the time Dryden has his first assessment, Cooper was three weeks old.

By the time he was diagnosed, three months old.

Looking back, I'm glad that things worked out the way they did.  Had I known that Dryden had autism I may have been scared to go ahead with more children, and he may have ended up an only child.  As it was, I had Cooper to think about and take care of, and it was "too late" to think about a second child.  I'm so thankful.

As I learned about autism and siblings I knew what I was looking for in Cooper, and I swore that I would never miss the signs again, or write them off like "he's just late, he'll catch up."  By the time he was old enough to show any noticeable signs, we had a great team of professionals in place for Dryden, and they always checked up on him too.  The psychologist who diagnosed Dryden was absolutely wonderful.  She would always engage Cooper, ask questions, point out the things that he was doing on or ahead of schedule, and advise me of any red flags to watch for.

Cooper was incredibly social, had great joint attention, loved to interact, and was earlier to walk than Dryden by almost three months.  His fine motor skills were great and he loved to laugh with us and make us laugh.  He would do a little dance or jump and then immediately turn to make sure we were watching his performance.  No signs of autism.

Fast forward to 12 months, then 15, 18, and 20.  He still didn't have as many words as he should, and he wasn't putting two together yet.  Everything that he said was a question, and almost always in the form of a request.  More?  Juice?  Up?  Please?  Show? But never an observation or a comment.  He never pointed out the cars driving by or the cat on the couch, or asked where Daddy was while he was gone to work.

I figured that he was likely just following in Dryden's footsteps, since he is almost entirely non-verbal and gets everything he needs without having to speak.  I thought Cooper just thought that's how it was done.  He didn't show any other signs across the board.

I spoke to our pediatrician, who said he was probably just a late talker, and didn't seem concerned because he was meeting all of his other milestones.  I spoke to our speech pathologist, who gave me some strategies to encourage more words, but also didn't think I had a reason to worry. At the most, I thought he might have a speech delay.

Then I spoke to the psychologist who diagnosed Dryden.  She was concerned.  She suggested a couple of phone calls I could make, some speech therapy we could get involved in, and best of all, she offered to spend an hour or so with Cooper, off the books, and give me an idea what she thought, and what we might be looking at.

Just before he turned two, I took her up on the offer and we went to Dryden's therapy centre to visit with her.  She spent the better part of an hour talking, interacting, engaging, and throwing in little exercises that I recognized from Dryden's assessments.  When it was over she told me that she was 90% certain that Cooper did not have autism.  Unfortunately she also said that she was 90% sure that he did have *something* going on, be it a speech or developmental delay.  She gave me some advice and told me the ball was in my court if I wanted to wait a few months and do a full, on-the-books autism assessment.

Time passed.  What seemed like overnight, Cooper started developing sticky behaviours.  He started lining up magnet letters in order from A to Z.  Over and over and over.  He would do all the capital letters.  Then all of the lower case.  Never mixing the two.  Then he would do them backwards.  And he would cry when it was time to stop.  The first time I saw him spell a word in magnet letters, it was "elephant."  By the time he hit two and a half, he was spelling words like "basketball," "hockey," "football," and "ping pong."

He started having what I thought were meltdowns.  One day I cut him a piece of cheddar cheese.  He accepted it happily and in moments he was bawling.  Screaming.   Inconsolable.  It took me what seemed like ages to realize that the issue was simply that the piece of cheese had broken.  I cut him a new piece, and he was eventually okay.  He started having meltdowns when his toys didn't act the way he thought they should, if the magnet letters fell off the couch, if the six-foot floor jigsaw puzzle didn't fit on the chair he was trying to build it on.  I took to distracting him and hiding the toys that made him melt down.  The meltdowns didn't always pass by fixing the situation either.  If he was screaming because a toy wasn't working right, by the time I fixed the toy and handed it back, he was too far gone.  He didn't want it anymore and that made him even more upset.  We just had to wait it out.

Sticky behaviours.  Lining up toys.  Meltdowns.  His sleep had never been ideal.  He refused to sleep in his bed, sleeping only on the couch, and at two and a half he was still waking at least once a night.  If he woke up on the couch he would silently come upstairs and climb in to my bed with me.  If he woke up in his bed he would immediately scream his face off.  I started picking my battles and he still sleeps on the couch every night.

I started suspecting autism,  in the back of my mind.

I told our pediatrician that I planned to book a full assessment.  She told me that I was probably being over cautious, fearful because of Dryden's diagnosis.  But then she took the time to go over the red flags list with me, and by the end of our appointment, she agreed that he should be assessed.

We scheduled the assessment and it was booked within a few days of him turning two and a half.  (30 months is where the diagnostic module changes and we could accurately do the full assessment.)

The day of the assessment I had crazy deja vu...

Check back for Part Two this Evening!

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