Or Maybe He’s Not…

This is my last post on the “whether” and the “why” when it comes to Charlie.  I will still write about him and our challenges and what we’re doing to work on them.  But I’m going to stop wasting time and energy on finding a label and a definitive answer.  For some, maybe there just is no specific label and set of “rules.”

Since this is my last post on the subject, it will be a semi-long post.  Feel free to skip it if it doesn’t interest you!

The reason I’ve changed my mind, yet again, is because of the parent-teacher conferences I had today with Charlie’s teachers.  When I brought up the Fragile X test and autism to Charlie’s special ed teacher, she said, “I don’t see that.”  And she is a person who has earned my very high opinion of her.  She said she does see most of the behaviors I am talking about, but the “social” portion just doesn’t fit someone who is autistic.  And that is the part I had doubts about myself.

It has been, and still is, so unbelievably frustrating trying to figure out what is afflicting my poor child and trying to help him.  So I have decided just to stop worrying about “what” it is and just put all my energy and time into treating the symptoms.  Autism, Fragile X, and “Pervasive Developmental Delay Not Otherwise Specified” are not curable, anyway.  All you can do is treat the symptoms.  So my thinking now is that I don’t need to worry about a label.  My time and energy is better spent treating his symptoms, so that is what I’m going to do.  I have a plan and a re-newed vigor and excitement about things I can do to help him, which I plan to write about in a separate post.

So, back to the parent-teacher conferences…  (He is in kindergarten in the morning, with a Special Ed helper just for him, then a PATHs class [social development], and ECSE [Early Childhood Special Education - or special ed pre-school, to put it another way] in the afternoon, along with a speech therapist, so there were lot’s of people to meet with today!)

His Special Ed pre-school teacher said that he is doing great and has met all the goals she made for him, as written, for the entire YEAR.  Everything from here on out as far as her work with him is “over and above.”  So that was really great to hear.

His speech and language specialist said that he had met his goals for this tri-mester and was on track to meet them for the year.

His PATHs (social development) teacher said that he is doing better but still struggling.  He has a hard time in his interactions with other kids and a very hard time dealing with his frustration-which leads to anger-which leads to tantrums and yelling.  He is not meeting his goals there.  She is wonderful and patient, fortunately.  I believe he will continue to progress, but his problems in this area may lead to some big problems in the next school year.  I’ll elaborate about that a bit later.

His kindergarten teacher showed me his work and had some good things to say, but this is where he is clearly way behind all the other kids.  In comparing his letters and his attempts at writing words and sentences and things, he has improved since the beginning of the year.  But he is nowhere near where the other kids are.  Nearly everything on his report card is “needs work,” though he got a few “progressing,” and a couple of “meets goal.”  And every single area was asterisked with “With help” or “With modifications.”  He doesn’t do any of his work alone and on his own.  And all the other kids do.

I know I shouldn’t compare, but just to illustrate, there were little stories on the wall that the kids in his class had written about a picture of a snowman.  Most were faily neatly-written and spelled right for the most part and had several sentences.  His was a bit scrawled, with a couple of backwards letters and was only two sentences - basically describing the snowman – saying that he was wearing a hat and was a snowman.

So anyway, he is sure to be in kindergarten again next year.  And he is a July birthday (he is now 5-1/2), so he will be the same age as many of the other kids in that class anyway.  But there is another wrinkle, and I haven’t decided just what to do about that yet.

The school he goes to now mainstreams Special Ed kids with a helper in the classroom for them.  They don’t even have facilities or a system for segregating the Special Ed kids.  So before I told them that we were returning to Seattle in June, they started priming me for the idea of sending him to another school.

They were telling me about other schools in the area with Special Ed classes that were just Special Ed kids, segregated from the rest of the students.  Due to his difficulty in progressing in the social development area, they feel he might “do better” in a different setting.

For the most part, I like his school and the teachers.  But this little bit is just b.s. to me, for two reasons.  First, they have pushed very hard for trying Ritalin for him.  Second, his kindergarten teacher.  I don’t want to say for certain, but I got the idea from the very first day that she didn’t like Special Ed kids in her class.  I feel she is against mainstreaming and doesn’t like anything that is out of the ordinary or the least bit of a challenge.  I do not get that vibe from anyone but her.  But I do get the vibe from other teachers that they get feel the same way, but can’t really say anything.

So, not to wax on about that – because it would be a waste of energy – I’m just a bit worried about the recommendation they will make for Charlie for the 2008-2009 school year.  I agree with the recommendation that he should repeat kindergarten.  But I do not necessarily agree he should be segregated.

I am going to have to think about that one a lot.  In the meantime, there is a whole ‘nother tri-mester of school left for him to make progress in, and they do recommend him for summer services, so there is that.  Then there is the plan I have to pro-actively treat his symptoms and try any and every alternative method I can to teach him, and just throw away normal thinking on how to teach a kid to develop their language and read and write and figure things out.  He needs a lot of help with emotions and with his fine-motor skills, too.  So we will work with those.

He is great at drawing and figuring things out in video games.  He does really well with visual cues.  He has great spatial ability and is extremely imaginitive.  He carries on extended conversations with imaginary friends (not just one) making up little stories to tell them, etc.  He remembers everything, even from years ago.  He has a lot of positives to work with.   He has an amazing personality, is very charming, very funny, likes to make people laugh (there’s the social stuff that does not seem autistic), and is the cutest kid ever.

Here are some of the many reasons I thought he might be autistic:

He was diagnosed with “Sensory Processing Disorder” in 2006, which is almost always seen in people with Autism (He was diagnosed and declared as “Learning Disabled” at that same time, and I was told that he is protected under the ADA – Americans with Disabilities Act)

He does “stimming” (making on-going, loud, humming-like noise to zone out after being over stimulated) for a long time a few times a day

Hand-flapping

Spinning obsessively while watching his hands

Notices every little noise and movement – and is overly-distracted by it

Obsessed with lining things up (putting all his toys in a line instead of playing with them) – he has rarely ever played with toys the way they were meant to be played with – he just uses them for props – mainly to be lined up!

Severe tantrums beyond the usual age (he still has them)

Needs routine or goes “ballistic” (changing routine results in one of the following: tantrums or an extended period lining things up – and they have to be perfect or a tantrum will still happen)

Echolalia – Saw speech as ritual to be repeated and not as communication.  He would simply repeat back to you what you just said,  “What did you do at the park?”  “The park.”  “No, what did you DO at the park?”  “DO at the park!”  That was up until about 10 months ago….

Severe speech delay – resulting from – what?  That is the biggest mystery.  Is it the echolalia?  The impaired sensory processing?  He could not communicate conversationally until about 10 months ago.  And has only really recently started having what I would call a semi-complete, satisfying short conversation.

Many other developmental delays and all the “red flag” hallmarks of autism, including hand-flapping; extreme fascination with ceiling fans, door latches and hinges, light switches, etc.; not able to pedal a tricycle until about 9 months ago; extremely poor fine and gross motor skills; avoidant eye contact when much younger….

The list goes on, but it was significant.  And I wouldn’t even care about all those little quirks, which I consider endearing, actually, if there hadn’t been the significant delays behind them that made me concerned that he would never fully develop speech and be able to learn new things.

The speech and language-comprehension delay causes SO many problems.  He was still in diapers at the beginning of this school year.  He only became fully potty-trained about 2 months ago.  It has prevented, or created a huge challenge with, my teaching him anything new at all.

But now that the speech has kicked in, and is actually developing, I am encouraged quite a bit.

So, no matter whether it is autism or PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified, which is what they call someone with a lot of autistic traits and developmental delay who does not meet all the criteria for autism), it really doesn’t matter to me anymore.

He is his own little unique Charlie, and he has his own special challenges.  And that’s all there is to the “whether and the why.”

End of that chapter!