Posted in School Daze

Forced Flexibility aka Autism Acrobatics

Part 1 of a 3-part series on “Best Parenting Practices” (that Worked for Us)!

Let me preface this entry with the following caveat.  Brian is now 22 years old, and graduating in May from a college honors program with a degree in Communications and double minors in History and Spanish.  He’s headed for Scotland in the fall to attend the University of Glasgow for his Master’s degree.  He’s witty, insightful, smart as a whip, and fun to be around.  He’s no longer on any medications and has several close friends at college.  I love him with all my heart and soul.

It wasn’t always so (the first part…I’ve always loved him!)  He’s struggled mightily to get to where he is today.  It’s been a rough road (and that may be the understatement of the year).  As a youngster, Brian’s diagnoses included Asperger’s Disorder, Attention Hyperactivity Disorder, Non-Verbal Learning Disability, Depression, Anxiety, and Sensory Integration Dysfunction.

Looking back, there were many factors, events and people that contributed to transforming Brian from an out-of-control, impulsive child to the brilliant and hilarious young man he is now.  Three main themes stand out for me:  1) flexibility; 2) a passion for advocating for my sons;  3) recognizing and heeding great advice when presented.  Over the next three blog posts, I’ll visit each theme and relay some of our experiences.

My focus today is flexibility.  I’ll share some thoughts and then take a walk down memory lane, sharing some history of the “Life of Brian” from Kindergarten through 4th grade. 

By “flexibility”, I refer to the ability to adapt and to not stay wedded to any particular course or plan.  The capability to veer in varying directions at critical junctures.

Full disclosure…I was NOT very flexible prior to this autism baptism by fire.  “Because I said so” was my initial and early parenting mantra.  I won’t say it changed quickly, because it didn’t.  I beat my head against a wall more than once or twice before I “got it”.  But it’s sooo worth it.

In my opinion, as an autism parent, you ultimately adopt one of three attitudes.  1) Freeze or Faint:  Stay stuck in denial (many do), and mentally shuffle the facts so that reality is bearable.  2)  Flight:  Accept the diagnoses, but refuse to take on the huge challenges that come with providing your kids the help they need.  Assume the school and others in authority will do what’s right and get your kids’ the help they need.  3)  Fight:  Jump in with both feet.  Immerse yourself in all things autism and related issues.  Be flexible, advocate, and listen to others who have been there with wisdom to share.

I highly recommend Door #3 – FIGHT!

In 2002, Brian enrolled in a small private school in Georgia for Kindergarten.  When we applied, I chose to not reveal his Asperger’s diagnosis.  I didn’t want that to factor in whether or not he was accepted.  He passed the entry tests and was admitted.  We couldn’t really afford private school, but even back then, I felt that Brian would be “eaten alive” by the GenPop kids, so we just figured out a way to make it work.  His differences were not as apparent back then, but he was quite impulsive and lacked self-control.  These traits were common to many of the kindergarteners, so he didn’t stand out too much.

A few of my memories of his kindergarten year:  he was already interested in sports and was reading the sports page daily to check on the Atlanta Braves.  Brian would tell his assistant teacher every day what the paper said about the Braves.  He was also reading chapter books, and way ahead in math, and so his teachers were mostly “wowed” by his relative strengths at that age.  He also had an extensive speaking role in the Christmas play.  He was selected because he memorized so well, and he was able to pick up his lines incredibly fast.  It was so cute to see his scene as he explained to the Headmaster that “Christmas wasn’t about toys and getting gifts”.

But I also remember him crying a lot, running to the bathroom, getting his feelings hurt easily (they played musical chairs once, and he absolutely refused to accept that he was “out”.)  There were quite a few bumps in the road, but it was K, and so it was for many of the students.

First grade was similar to Kindergarten…the strengths overshadowing the weaknesses, but still bumpy.  Many comments emerged that “Brian needs to learn to raise his hand”, and the like.  Impulsivity had been an issue for him since he was a toddler.  Also, by first grade, he was self-aware enough to develop stage fright, and when he was asked to sing with the group in the Christmas play, he ran from the stage and out of the auditorium.  We found him huddling at the other end of the church.

In second grade, he had a teacher that had (in my opinion) poor skills controlling the classroom.  She seemed to allow the class to take the lead.  This was disaster for Brian because he was all too willing to be in charge.  By second grade, his differences were becoming much more apparent.  There was an incident where Brian was in an after-school science club, and when the teacher announced that they were going to do a dissection (a frog), and Brian melted down.  He ran out of the classroom, leaving the teacher stuck with a room of kids with Brian on the loose.  There were a couple of times that year that Brian ran away from the classroom.  Concern among staff was growing.

Along came third grade.  The first day of school just happened to be a chapel day, which meant the kids wore their formal uniforms.  I still can’t believe that for K thru 2, Brian wore a button-down shirt with a clip-on tie and uncomfortable formal shoes – twice a week?!?  These days he lives in shorts, t-shirts and Crocs, even in the wintertime!

Anyway, on the first day of grade 3.  Brian was returning from a  summer of wearing shorts and sneakers.  Here he was, stuffed back into formal clothes on the first day of school.  When it was time to walk over to chapel, Brian was asked to get in line and follow the other students.

Note:  I mentioned earlier, private school wasn’t in our budget, so when Brian was in first grade, I started working part-time in the school office in order to receive the tuition discount.  Brian knew that I was in the front office, working most of the time.

So on that first day of third grade, Brian was feeling very uncomfortable in his formal attire.  His shirt was bothering him, and his shoes hurt.  He broke out of the line, and made a run for the front office, hoping to find me there.  Unfortunately, I wasn’t working that day.

The receptionist didn’t know about the achy feet and scratchy shirt, and Brian didn’t tell her.  She made him go get back in line.  He went, but again tried to break free.  The staff restrained him, and so of course, he fought back.  Fight or flight, and the “flight” didn’t work so well for him.  He hit the teacher who was restraining him, and also hit another teacher who was trying to help the first teacher.

Later, the Headmaster (who was also my boss), sat down with Brian and Ed to calmly discuss what had happened.  My husband had been called and already arrived on scene.  Ed didn’t realize that with Brian already upset and triggered, the best course of action was to take him home, and return another time for that “calm” discussion.  I later discovered that he, meaning well but not processing clearly, struggled to restrain Brian, thus pushing him over the edge into fight or flight mode again!  Brian wriggled free and slapped the Headmaster in the face.  He was expelled, and our private school days were done.

Ed was briefly unemployed at this time, and we were all traumatized by what happened at school.  Brian was emotionally a wreck, and we were also experimenting with different meds.  By this time, it was already several weeks into the school year, so we decided to homeschool Brian.  Ed and I would share the role of “teacher” since he was between jobs.

That semester was a disaster.  It was a good thing that Brian was so smart and already ahead of his peers, because he didn’t get much teaching from us.  Ed was busy looking for a job.  I had no formal program going…just winged it.  We did however, join a local homeschool group that was helpful and provided field trips, park days, and other events that were beneficial.

After a semester of pseudo-homeschooling, we enrolled Brian in public school for the second semester of third grade.  I had extensive discussions with the lead person (she was kind of the VP of special needs).  They recommended a psychologist.  We saw her immediately and for many appointments.  The psychologist consulted with the school, and we got a program set up for Brian.  He didn’t do specials at all, at first.  He ate lunch in the conference room next to the VP’s office, and was allowed to invite a friend to eat with him daily (this was a big school with a really loud cafeteria, and lots of smells that irritated Brian).  He started the year (I still can’t believe this) with the group of kids that are “pulled out for resource”.  Basically, he was with a group of 4 or 5 other kids, mostly WAY behind academically, but it was a safe and quiet environment. 

And then the good Lord blessed us with a teacher who “got” him in a way that others didn’t.  She later shared with me that the reason she enjoyed Brian so much was because she herself had Asperger’s and she could relate.  It was a beautiful, symbiotic relationship.  She was the resource teacher, and didn’t have a homeroom class, yet Brian went to her for homeroom.  While she graded papers, or did her morning work, he sat with her and did brain teasers, puzzles, or read a book.  Totally stress-free way to start the day, much better than often noisy and crowded homeroom classes.  He stayed with her for academics as well, and she was super-willing to go with his flow, academically.  If he asked a question that was ahead of what they were doing, they explored the answer together.  She was great with him, and he flourished.

Gradually, over that semester, Brian started going to regular third grade classes.  Week by week, we added a bit more, and eventually specials and lunch fell into place.  By the end of third grade, Brian was completely integrated with the other third graders, doing beautifully.  We adults patted ourselves on the back – great job!

Somehow we lost our focus (and perhaps our minds).  Brian was doing so beautifully by the end of the third-grade year, and it just didn’t occur to any of us what might happen after being out of school for a whole summer, and then jumping into fourth grade full boat, with no transition time.  And so, he began fourth grade, with no transition:  homeroom, specials, lunch, the whole deal.

Sadly, he didn’t make it past the first week.  He was “eloping” from the classroom.  Hiding in the bathroom, clinging, people trying to pull him out.  Once again, people (more than one) restrained him on a couple of occasions, and of course, he fought back.  Along the way, he hit the vice principle, and a teacher. 

He was suspended, and we (the adults) began “meeting” to figure out what to do.  We agreed that it had been foolish to not ease Brian in, but what was done was done, and there were no do overs.

We tried several placements within the school, but by this time, Brian was so traumatized that he just couldn’t deal.  The school recommended a program at a special school where they would be able to deal more effectively with his outbursts.  This school actually had rooms with padded walls.  I had heard stories from other parents, and I knew in my heart that this was definitely not the placement Brian needed.  While other parents went through endless IEP battles, bringing in attorneys for protracted legal battles, I felt that I could do a better job helping Brian to decompress and learn at his own pace.

And so, we began homeschooling again, this time in earnest.  I had to quit my job to accommodate our new routine, and took on part-time evening work.  We re-joined the local homeschool group, and most of the time it was a good fit.  Brian still struggled with meltdowns, tantrums, and impulsivity.  He never internalized a sense of his “place” in relationship to adults.  I think he was born a mentally old soul, and this contributed to him not being able to follow instructions and obey adults.  In his mind, he could take or leave their directives.  And he didn’t have much of a filter.  He called it as he saw it.  Still does!  But it’s received differently by others when you call it as you see it at age nine or ten vs. twenty-two.  Simply growing up and being more equal as an adult has been one of the best things to happen to Brian.  Unfortunately time takes time.

Our homeschool group offered a weekly series of classes.  If you wanted your kid to take a class, you had to teach a class in return.  It could simply be Storytime for the younger kids, or any area in which the parent excelled.  We signed up, and all was well at first.  I taught basic Spanish.  Brian took a history class, a science class, PE, and a class called Math Games.  Sadly, Math Games became our undoing.  The mom/teacher was married to a Marine, and was one “squared away” lady.  Inflexible, and not very patient with out-of-the-box behaviors.  In retrospect, knowing this, why did I allow him to be in her class?  It wasn’t the smartest decision.  Hindsight being 20/20 and all that.

Anyway, one day in Math Games, the instructor made some mistakes in her calculations as she demonstrated for the class.  Brian, being Brian, loudly announced in front of the group: “You don’t know what you’re talking about!”.  Diplomacy was not one of his core strengths. 

It got ugly from there.  Beyond frustrated, I lost my cool (which didn’t exactly help matters).  Ultimately, we were asked not to come back to the weekly classes as the teacher felt threatened by Brian.

As hard as that was, things did get immensely better over the years, as described at the beginning of this post.  Today, I’m reflecting on my journey in flexibility.  From “because I said so” to a completely different world view.  And today I’m grateful.  I am beyond proud of Brian.   And although I never envisioned navigating private school, public school and homeschool (and all that entailed), I’m a better mom, wife, employee and friend for it.  Today’s mantra:  Adapt and overcome!

Next up:  Part 2 – Advocating with a passion!

Author:

I am an Autism parent, an Aspie, and married to an Aspie, Ed, my husband of 24 years. I’m writing to share our story, which is the real-life drama of raising two boys on the autism spectrum. Our story contains tragedy, comedy, lots of action, conflict and adventure. But it’s also the story of the evolution of an autism parent. For as much progress as my sons have made, I may have made more. I’ve become who I am today through their struggles and triumphs. People have told me over the years that I am a hero and role model. I don’t feel that way. My superheroes are Brian and Evan, and maybe my superpower has been in raising them. They are true trailblazers and the wind beneath my wings.

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