Glimpses

So I have been trying for more than a few days to write this blog.
Each time I sit down, I find I cannot find the exact words to convey what I feel - I start to write and think "Well, before people read that they need to know *this* and before they know *this* they need to know *That*" and before you know it, I've gone back further and further and you just have to know Matthew from the very beginning to understand the significance of the END of this blog.

So I will start at the beginning. In a nutshell - because you can go back and read all my earlier blogs if you want more detail
For those that have already - or who know us - feel free to skip ahead past all the history.

Matthew Graeme - born July 4th, 2002. 6lbs 12 oz.

This baby was LOUD.

From day one he cried.
He ate, and cried.
slept, and cried.
pooped, and cried.

For 3 months he slept in a carseat, because of reflux - it was the only position that worked.
He developed colic at 6 weeks that lasted until he was 10 months old. (so we thought).
He was a Very. Unhappy. Uncuddly. Baby.

For every smiling baby pic I have there are 10 more of a scowling grump - this earned him the nickname of Billy Idol when he was a baby because of the near permanent sneer he had going on.

And did I mention he was loud? He spoke full sentences at 18 months - but had zero gestures. He didn't learn to point until he was 3-1/2.

Seems I'd always known something was just a little bit off - from the day he was born, and gradually becoming more evident to me. The hours of rocking and banging in the crib, the preoccupation with spinning objects, and the fact that everything he felt seemed to be MORE intense - smells, sights, sounds, touch.
I will never forget the day he wrote his ADOS - the diagnostic test for Autism.
The doctor administering the test was thrown for a loop during the 'play' portion of the test because his responses were just so "unusual". He had been receiving therapy for over a year at this point - unofficially diagnosed at 2 meant he could start therapy - the official diagnosis at 3 meant that therapy could continue and would open up the resources required within the school system when he started at age 4.


This is where he was.


At age 6, he aged out of the government funded therapy. He'd had 4 years of early intervention, and the results were phenomenal. A final appointment with the developmental ped. who'd first diagnosed him ended with him being called
"The poster child for early intervention"

He transitioned from Kindergarten to grade 1 without any major problems - he was virtually indistinguishable from any other 6 yr old. Anyone we told seemed genuinely surprised that Matthew had autism. "Really?" "Oh that's crazy"
To the point where I began to wonder - was he mis-diagnosed? By this time we'd been through the process again with Joey, our youngest son, who was most definitely autistic. Joey having severe language delays and very typical autism made me rethink where we were with Matthew, who was by comparison, so much more 'normal'
In April 2008 we were part of a genetic study on Autism and all the boys were once again administered a battery of tests and diagnostic tools. As this was conducted by a completely separate and world renowned institution (Hospital for Sick Kids) I began to wonder "What if they tell me that Matthew is Not on the spectrum - and never was" - He seemed so different from the head banging 2 yr old that had worried me so much. Had I been I wrong all this time?

The answer is no I was not. Matthew's diagnosis was surprisingly confirmed. I admit to being surprised because I know that the criteria is fairly strict to get an actual diagnosis.
Once again our oldest scored too low for an *official* diagnosis (He remains unofficially Aspergers, with "atypical" results - but not enough to meet the threshhold of spectrum disorders)
Matthew however was confirmed - which surprised me, since we actually have an easier time with him than with the other boys. Maybe it's his age - or maybe it's the (now) 5 years of therapy he has received and continues to get that makes him appear so 'normal' to everyone including me.

All of that background to explain just why this story in the next paragraph really had an effect on me.

The boys have just started getting into Harry Potter. We have let them watch the first few movies, and by the 3rd movie - Matthew had not lost interest so much as lost track of what was going on. Just could not follow the story because he is horribly impatient and will not wait for the story to unfold, so he asks 149265 questions that in turn causes him to miss what is presently happening.
Chris started reading the first book to the boys - knowing as I do that the books are always much richer in detail and don't have portions edited or removed for time constraints.
So while Chris was reading the other night - one of the sentences in the book was "Harry's head was swimming".

Immediately, Matthew questioned him "What does that mean?"
Being very literal - he has a hard time with expressions and idioms that don't seem to make sense. How can someone laugh their head off? How can someone be 'all shook up'? How can a head be swimming? Was he in a pool?

Chris had to stop and explain that it was an expression that meant that Harry had so much stuff going on in his head all at once that it made him feel dizzy and cloudy like being underwater"

Matthew's next statement was so profound; he said "That's how I feel all the time"

It has NEVER ever hit me so hard - how it feels to be him. It has been on my mind nearly constantly for the past week and has caused me to replay his life in my mind - This is how he feels all the time. ALL the time.
Every sense is so overwhelming for him that he can't think straight.

I recently watched an episode of 20/20 with Carly Fleischmann - a 14 yr old non-verbal autistic girl who can type with an astounding articulateness, that provides such insight into what it is like to be profoundly autistic. She writes that she has to bang and thrash about because there is so much sensory information that is overwhelming, she needs to shut it out.

We have long known about Matthew's sensory issues - I had thought all this time that he was undersensitive. That he needed to touch things and bang things because he wasn't getting *enough* sensory input and now I've been flipped upside down. I think he does it because he gets TOO much overwhelming information - his head is swimming. all the time.
I have experienced brief moments when my head gets overwhelmed and feels like it is drowning in a sea of too many thoughts all at once. It is not pleasant. I cannot imagine living like that all the time.
It explains SO much about him - and I while I am happy to have this tiny glimpse into his world - I am sad at the same time that I have no idea how to help him cope and how to make it stop.
It amazes me that he has been able to cope as well as he has, and explains the verbal vomit - he is talking all the time, words rushing out of his mouth, as if he cannot possibly contain them and they come bursting forth uncontrollably - and now I see that even that may be a coping mechanism for him. Listening to his own voice may be the only way to sooth the cacophony of thoughts swirling around his head all the time.

And this is only one glimpse.

How much more is there that I have no comprehension of??


Today we went to the beach. Matthew loves the waves and is in his own world with the sound of them.
A few gems from today:

"Why is everyone playing dead?" - Yep those were sunbathers. How odd it must look to him, to have people playing dead at the beach - I mean who on earth would just want to lay there in the sun when there are waves to play in and mud to throw and sandcastles to build and bees to run away from. Strange strange people.

I did kind of snicker a bit when he said that, but he just looked at me and said "It's just an expression mom"

How many odd things have I said to him over the years and when he's asked me about them I just say "It's an expression" .
These are the things that give me the greatest insight into him. Oh how I love him.

Just Tiny glimpses.

What I wouldn't give for a 5 minute window.