Expect the unexpected...

Yesterday I got some expected, yet still devastating news.  My middle son has Asperger’s syndrome, and (as of right now) has low average to borderline intellectual functioning.

Wow that felt weird, typing that.

I was expecting Asperger’s.  I started researching three years ago, trying to figure out my son’s violent mood swings, not really talking, parallel play, OCD tendencies, and severe anxiety.  His (then) pediatrician said nothing was wrong, so I took him to Jefferson Parish School District’s Early Intervention.  After testing him, they told me “child has no exceptionalities, and is a little slow”. 

I’m not kidding.  That is an actual quote from the summary of a 12 page report.

At this point I think I must be crazy or stupid for being (what feels like) the only person who sees something wrong with his behavior and being behind on hitting milestones.  I am told not to compare my children, but I can’t help it.  My oldest child hit all of his milestones.  He was never violent with us or other children.  He could speak clearly.  He didn’t have nuclear meltdowns in public when overwhelmed.

So I got on a (five month) waiting list to see a pediatrician that specializes in behavior.  After her evaluation, she diagnosed him with: OCD, Severe Anxiety, Social Anxiety, Selective Mutism, and (with reservations) Pervasive Developmental Disorder-Not Otherwise Specified (which is a term on the Autism Spectrum for children who don’t quite fit anywhere else).

I say with reservations, because even this doctor did not truly believe he had Autism, but admitted that if she gave him that classification more doors would be open for him.  Of course she sort of implied that in her report, so later that would bite me in the ass.

Her recommendation?  Go back to Early Intervention, show them this report and get him in school ASAP.  She believed that once he was in school, surrounded by other kids he would start behaving like those kids, and in a few years these disorders would just go away. Ok.  Maybe she was right, and everything will get better soon.

On the first day of Pre-K, I was asked by the SPED administrator why my son needed to be in SPED, as the report from Early Intervention said there were no exceptionalities.  Huh?  I had already gone back to EI and given them the doctor’s report.  I was then told that they don’t like to label kids and that is why they said he had no exceptionalities, but since another doctor said so, they would amend their report.  Except they didn’t.  And now I look like an idiot to the school administration. 

Seriously?  I just want my son to get an education.  At this point he was 4 years old and not toilet trained (trust me, not for lack of trying), he spoke in short, hard to understand phrases, and almost constantly sucked his thumb because he was having panic attacks.  And everyone keeps telling me that if he just goes to school everything will resolve itself.

Well 2 years later and everything is not all better.  Sure, he is now toilet trained, and he speaks better, and has friends. 

However he still has some issues.  He can’t be in a store more than 20 minutes without having a “fit” (a panic attack).  He constantly repeats things.  He can’t use the toilet without getting permission first (it has to be a verbal conformation, and trust me, he will stand there and continue to ask until someone tells him it is ok to go).  He has an extremely limited diet (corndogs, cereal, and other beige things).  As I type this, he has repeatedly asked me to change my shirt (pj top with penguins on it) because it is bothering him.  He only wears shirts with collars and buttons (think polo style).  He has obsessions (trains, his Nintendo DS, etc).  He can barely hold a pencil and write his name, and he cannot read even sight words, and yet will be entering the 1^st grade in a few weeks.

So I decided to have him re-evaluated to see what to do next.  I decided to take him to a highly recommended clinical psychologist (what I should have done 3 years ago, but I didn’t know to).

After her evaluation, which took three 1 hour sessions, we met yesterday to discuss everything.

The first thing she said was that she didn’t understand how certain people missed his clearly Asperger’s related behavior.  She went on to say that the people (by this I mean official people, doctors, teachers etc) who told me over and over that he was fine or would simply get better on his own one day are either stupid or passing him along to someone else.  At that moment, I swear I wanted to leap out of my seat and hug her.  You don’t know what it is like to have seemingly educated people tell you over and over that everything is fine.

She then gave her exact diagnosis, Asperger’s, is a “slow learner”, and is at risk of ADD.

I expected Asperger’s.  The description fit, the symptoms fit.  I just needed someone to acknowledge it.  I was not expecting the below average intelligence or rather “slow learner” diagnosis.

As a mother, I see the best in my boys.  My middle son is so logical (in T-ball he refused to run all the bases because he knew that he was eventually going to run from 3^rd base to home anyway).  He is an artist (I have mounted and framed two pieces of his work from school because I find them so beautiful).  He is very skilled on a computer for someone his age.  Sure, he is having trouble in school.  I always assumed that that was his stubbornness much more than his ability.

The doctor does believe that he can get caught up, with ABA therapy, that he can be trained to function just like everyone else, but it is going to be a long road ahead of us.

It isn’t going to just get better with going to school.