Our New/Old Normal, part 1

Our son Alexander is eight years old and he was just diagnosed with Asperger’s Syndrome.  Many shorten it to Asperger’s or AS.  Read about it HERE. 

Hind sight being 20/20, it seems perfectly obvious that Alexander has likely had Asperger’s his whole life.  Mark and I have spent a lot of time combing through memories of our son with a new lens and saying, ah ha! over and over again.  I’ve been playing the game Asperger’s or Alexander?  Is his demand for peanut butter sandwiches on wheat bread with the crusts cut off served for two meals a day a result of Asperger’s or is it just a preference?  What about this preference or that behavior?  I’ve started a list that is quite long.  I don’t know why but I suppose it has something to do with my own understanding and acceptance of this new/old normal. 

We are experts on Asperger’s and yet we know nothing about it.  I think it’s safe to say that about the specialists as well.  Looking back I can recall incidences at a very young age that point to Asperger’s.  Alexander’s food restrictions began as a toddler.  One night rather than eat one bite of a vegetable, he waited us out and eventually fell asleep under the table.  As we carried him to bed for the night I was so frustrated with my stubborn son.  I realize now that this wasn’t him being stubborn.  This would become our pattern.  Alexander would or would not do something and I would be frustrated with his stubbornness.  So it is a relief to finally be given a tool with which to understand my child in a way that I could not prior to this diagnosis.  Relief, however wasn’t my initial reaction, but I’ll get to that.

Looking back there were signs all along.  Even in preschool he had difficulty interacting with his peers.  He has friends now, but not many close ones and still prefers to be at home entertaining himself.  His lagging social skills is why we enrolled him in Cub Scouts this year. 

He and his father have spent countless hours learning about trains and the railroad, an obsession that we assumed Mark passed down from his own childhood.  As a family we all got into trains and have enjoyed this hobby immensely.  As the years went on Alexander has had other intense interests.  He loves and has an encyclopedic knowledge of the Titanic.  This has led to an interest in ships and when he pretend plays it is usually about something real, like the sinking of Poseidon.  He talks incessantly about whatever his interests are (currently Minecraft and Godzilla), but who doesn’t talk about subjects that get their juices flowing? 

His vocabulary has pretty much always been advanced, which we attributed to his obvious brilliance and the fact that we never have used baby talk with our kids.  Although he had memorized Green Eggs and Ham by age 3.5 HERE, he struggled with reading comprehension and received extra help in kindergarten through first grade.  Writing has always been a struggle and I had inquired about dyslexia early on.  Instead of a diagnosis, he started occupational therapy for poor fine motor skills and a possible processing delay.  He is an artist and if he’s not on the computer or iPad you can often find him drawing about his current obsession, which we attributed to the many artists in the family. 

Just over a year ago he began an odd speech pattern where he breaks words up with a pause on the vowel.  For example he might say bo(pause)oat for boat or do-og for dog.  It comes and goes and sometimes is so strong that you can’t understand him.  We brought it to the attention of the school, who didn’t see it, until they did, so he started speech therapy.

A social skills program began in December and Alexander was invited to join.  He spent six lunch periods with other 2nd graders who were seen as lagging behind socially to play games.  The kids just thought it was something fun to do and he was upset when it was over.  He was getting upset more and more and it began to cause us great concern.  Homework that should take 20 minutes would last at least an hour and would include meltdowns of epic proportions every.single.day.  We know he’s smart so we got frustrated with him for not hunkering down and getting it done.

The odd speech pattern became more prevalent.  The meltdowns increased to nightly at bedtime, because bedtime means that when he wakes up he has to go to school.  He really does not want to go to school.  Waking him up leads to a daily meltdown as it means he has to go to school.  Breakfast leads to a meltdown and the need to remind him 60-70 times to eat.  He struggles with following through with simple directions such as; go upstairs, change your clothes (which we lay out or he would end up in a sweater with shorts or some other odd combination), remember to change your socks AND underwear this time, brush your teeth and come back down.  On most days he can remember 1 or two of those steps and we have to send him back up and often fix his miss buttoned or backwards shirts, unzipped flys, missing socks, or unbrushed teeth.  He always responds with a meltdown and says he forgot.  So we get frustrated at his stubbornness and inattention.

With the addition of ST to OT and perceived social skills deficits he received a 504 plan and a SRT or Student Resource Team.  I knew something more was going on, so I did some research, decided he had dysgraphia or ADHD and insisted on a team meeting.  Note:  don’t say dysgraphia to a team unless you want everyone to freak out.  Yet finally they decided to listen and investigate further.  This is how the school psychologist began an intensive series of evaluations.

continued HERE