Our Ongoing Journey With Autism

...has thrown us some curves over the past few months.  Everyone's journey varies and we've had few complaints over the years with successful outcomes to many of our challenges.  But no one gets out of anything totally unscathed and we were about to learn this firsthand.  

Our older son David started high school this September at one of the top public high schools in the country.  Classical High School in Providence is a merit based public high school.  Admission is earned through an entrance exam and student middle school grades.  99% of Classical graduates go on to college, many to prestigious colleges all over the United States. 

In the meantime, Michael was completing his last year of middle school without his brother.  He struggled in the first few weeks and requested a number of schedule changes. Other than that, no one recognized there was a crisis brewing, until a day in October when he dropped his books in the hallway and ran out of the school.  

For the past five months we've been working with the school and outside counseling to deal with Michael's escalated anxiety.  We were able to eventually pinpoint the trigger and correct it, however it's been a difficult road for all of us, especially David, who was beside himself with worry. 

We recently attended a meeting hosted by The Autism Project where a Brown University professor was invited to give a short presentation about how the brain works and then a panel of young adults with autism shared some of their experiences.  The last 45 minutes was opened to questions from the audience.  One thing that was striking to me was some of the perceptions these articulate kids expressed, particularly with their school experiences.  As having just lived this with Michael, I could see how some situations were perceived a certain way by some of these kids when the reality was entirely different.  

Our happy go lucky son, who always appeared as if nothing bothered him became short-tempered and unhappy.  Michael's perception was that no one liked him, he had no friends because he was in classes with the "bad" kids and he had been deliberately screwed over when he was not included in an advance math class at the beginning of the year.  He expressed profound loneliness, depression and a high level of anxiety.  For five months we tried to discover why these kids were 'bad'.  Was he being bullied? No.  Were the kids in his classes mean to him?  No.  

As a matter of fact, just the opposite was true.  Michael was well liked and kids would try and talk with him.  He is not someone who initiates conversation but he will respond when approached.  We were perplexed as to why these kids were so bad.  

It was after a third meeting with the school, as I was following up with one of the autism specialists that the lightbulb went on. Nearly 5 months of everyone having separate pieces of the puzzle all suddenly came together.  Michael had been expressing focus on the 'bad' kids and 'bad' classes. We were all trying to find him coping strategies to deal with this, however it was the advanced math class where the root of the problem was.  As a result of not taking advanced math, Michael was not in the other classes with his preferred peers, the honor roll kids.  Therefore, he was in the 'bad' classes with the 'bad' kids, kids that were lower level learners.  In his mind, they were not his peers and he had no friends.  He perseverated about the injustice of being put in the wrong math class, but didn't express it in a way that made us recognize that was the main problem.  He instead expressed the focus of his frustration towards the kids and his actual classes.  

After my lightbulb moment, the autism specialist and I went to guidance and were able to switch his schedule again.  Since he would be taking a new language in high school, we were able to get him out of Spanish class and into the advanced math class. That simple switch moved him in three other classes with his peers, the 'good' kids.  Michael was called in and when told what we were able to accomplish, his entire demeanor physically changed in front of us and his face lit up. We could literally feel his stress leave his body.  Today, Michael's anxiety has lessened considerably and he is enjoying more of his day.  He still has his regular math class with the 'bad' kids but with the understanding there is nothing we can do about that and he has to deal with it.  But rather than 4 'bad' classes out of 6, he now has only 1.  We are no longer worrying that the phone is going to ring and advise us that he's run out of school again.  He is learning coping strategies with his therapist and we are hoping for a somewhat smooth transition to high school next year.  Michael has also been accepted to Classical and will be with his brother next year. 

Overall, we have been truly lucky with our public school experience.  Beginning with elementary school, we always experienced an environment of acceptance, teachers and students welcoming kids with all kinds of challenges including down syndrome, autism spectrum disorder and a host of other physical disabilities.  We have had caring teachers, administrators and teacher assistants throughout our children's school career.

I vividly recall a conversation with a speech therapist after an IEP meeting when Michael was in second grade.  He told us that both boys were making great progress, but don't be surprised if we see more of the autism once puberty kicks in.  He said sometimes the hormones exacerbate the autism. This conversation always stayed in the back of my mind, and when David transitioned smoothly to high school, we almost breathed a sigh of relief.  

We got zapped with Michael. 

April is Autism Awareness Month
April 2 is Autism Awareness Day #lightitupblue