What's individualized about that?

I have a bee in my bonnet that I can't stop from buzzing around. I've been sitting with these thoughts for awhile now. Let me paint you the picture...

The Kingston public school board has a special education team. Within that team there are specialized teams - a learning disabilities team, a behavioural team, an autism spectrum team...
A childs family takes part in an IPRC (information, planning and review committee) meeting that consists of parents, the teacher, the principal and vice-principal. The child is welcome, and I'm assuming that if there were EA support, the EA would be welcome as well. The purpose of the IPRC meeting is to label the child as fitting on of the pre-determined teams available for support.

After the IPRC meeting, and IEP (individualized education plan) is developed. IEP meetings are meant to be held annually, but any of the involved parties can request a meeting anytime throughout the school year. Sounds like a great system, right?

I was excited to have Max IEPd. I thought that the meetings and the documentation would lead to written support for him. That achievable goals would be captured for him. That a written snapshot of strengths and needs would be captured.

What a horribly bland, uninformative document it is!! It is general and vague. It offends me on so many levels. It is three pages long... the first is general demographic information and testing dates. The second and third contain the recommended accomodations that Max requires in the classroom. At least I think that's what I'm supposed to glean from it.

We all do things to regulate ourselves. Max's regulatory behaviours are all physical in nature, but he can and does minimize or maximize them according to situation and context. He has difficulty with verbal expression when overstimulated. In a class of 20, he's often over stimulated. He does grade 3 or 4 level math in his head at home, reads at the same level, and has pretty neat handwriting for a grade one kid. Apparently at school he does not.

The IEP has not helped Max. There are no recommendations in it. Accomodations, yes (but not great ones) but no suggestions about how to make the crazy world of school easier to navigate for a little guy who needs that help. No goals. No tips on how to support him in the class room. No paragraph on the 2 years of Floortime therapy that has been instrumental in his growing and learning. No note in the report of a passionate family who will happily follow through with extra work at home, or by following the teacher's lead on tough situations. No sentence that explains that setting an expectation for Max is the easiest way to get compliance from him.

Instead all the appropriate boxes were checked. Max was referred to the SLP, OT, and every other T they could think of. He doesn't need the SLP at this point, and OT recommended that he wear big headphones at school assemblies (where she never observed him!) to help him stay regulated. Just a thought, but isn't the whole point about helping him integrate, helping him to be involved rather than giving him an excuse to tune out?!

Headphones - bah!!! How could they have met us, heard us speak about Max and his abilities, our years of work to develop coping mechanisms, and then suggest headphones??!

Is it me??? Or is there something very wrong with this picture...

perish the thought

Max is 6 1/2. He's handsome, smart and quirky. He is the best little boy I know, and aside from the occasional moment where I debate leaving him out with the weekly recycling, I love him more than anything in this world.

Inevitably, babies become children, children become teenagers, and hopefully, if the cards are all played correctly, teenagers become adults, reaping the rewards of all the hard work it took to get there!!

Stereotypically, when I think about the teenage years, I've always thought of my daughter first. Remembering my teenage years, and inserting her in my place fills me with a bit of dread. I hadn't given much thought to Max as a teenager, because I have no experience as a teenage boy, and have nothing to relate his potentitial experiences to. Until a friend of mine started talking about boys bringing home girls to meet their mothers. What?!

I think there is some truth to the idea of a special love between mother and son (as there is truth to a special love between fathers and daughters). Maybe it's as simple as the representation of your partener in a little person that you created together? Maybe there's no truth at all and it's just something that has occurred in our family... hmmm. Not sure.

My point is that I've had these waking dreams of meeting Max's girlfriends the past couple of days. Absolutely terrifying, let me tell you! I am not (and won't be) that mother... I know there is a girl out there for Max, someone who will love him totally, who will complete him, and make his world go round. I am just dreading the learning experiences that he may bump into before he finds her.

I'm practicing my "oh-dear-you're-not-quite-what-I-expected-but-you're-welcome-in-our-home-because-Max-invited-you" smile. And I've decided to take up drinking around 2020... just kidding (maybe!)

leave my sister be

I'm the youngest of 4 siblings. We've always had an unspoken rule... we can say anything we want about each other, but nobody else is allowed to mess with us. I think that's pretty typical of most families. It is certainly a rule that I've tried to share with my kids, especially Max as the older brother. Abby is a natural defender, Max, well, not so much a natural.

Yesterday, their older cousin was tickling Abby and she was screaming (with delight - but that's irrelevant to the story...). Dan and I were sitting in the kitchen when Max loudly proclaimed "Don't you hurt my sister!" When that didn't work (because the other two were pretty caught up in their tickle fight!) Max yelled "Leave my sister be or I'm telling on you!"

I thought I might cry into my coffee (which may have ruined a good coffee - thank goodness for self-restraint).

The relationship between Max and Abby always seemed like it would be one-sided... with Abby being the initiator, the protector, the little-sister-trapped-in-a-big-sister role. Not the case, I'm pleased to report. In yet another amazing turn, Max has accessed the big-brother within, and it's made their relationship all the more wonderful to behold.

two dimensional

More and more it's hard to tell that Max has autism. He presents very much like a typical six year old. He's prone to tattling, to moments of obstinence, to somehow reaching an unreachable pitch with his whining....

He's doing well at school. Seems my anticipation of any possible negative turn has actually brought about nothing but good turns. I'm happy to shoulder all that anxiety for him. Seems like a Mummy job to me.

We got his first ever report card last week. He pretty much scored B's throughout (meeting the provincial standards). The noticeable exception?? The A he received for dance and movement... that particularly cited his skills for doing the Bird Dance and the Macarena. Seriously.

My boy can't be captured on paper. The school reports what he shows them, the skills he demonstrates. What I can't help but feel is what he allows them to see. At the parent teacher interview, his teacher passionately spoke of her intent to help him communicate what she knows he knows. I wish her much success, and little frustration!

Max is brilliant, both academically, and intuitively. He learns through integration and involvement. He shares his knowledge through engagement. Easy enough to understand, much harder to achieve. And people wonder why we need educational assistants...

the social life of a 6 year old boy

Max is a 6 year old boy.
There is an inherent lack of social skills implied and inferred by that statement.


Max has a cautious Dad, an outgoing Mum, and a sister who will happily take the lead in just about any social situation. He is a quirky kid, with a love of quiet moments, and a passion for the crazy moments.


I was told, early on in this process that he would have a hard time making friends. I watched him with other kids, and can admit to worrying that he would be left out, or maybe picked on. It's no secret that kids can be mean, and what if they didn't like Max?


I should have known better. I should have trusted that the charms of my boy could win over anyone. And that he'd make friends because he's likeable. And smart. And funny.


Kids can be mean, but they can also be incredibly accepting and forgiving. I've seen Max's class interact with him, and he with them. Max is one of them, and as such, what makes him stand out doesn't matter. Max is just Max.

Too bad that 6 year olds understand that better than most grown ups. But that will be another note, another day.

the label

So I knew I'd have to have a post about this eventually. I've thought about it alot, about how it transpired, my reaction (both public and private - and believe me they were initially quite different!!) and about what message I want to convey three years into the label.

Of course I'm referring to Max's autism. I'm dwelling on the word, the label, and how it fits Max... how he wears it. And truly, how we all wear it, and how it fits our family.

Max was 2 1/2 when his teacher first approached us with some concerns. I couldn't hear her, my ears closed, and I walked out of that meeting, knowing that Max had autism. Let me say further, that although his teacher never once uttered the word autism during that meeting, my heart screamed it at me.

I argued with myself for weeks - Max was fine. There was nothing wrong with him. I attributed the whole situation to Max's teacher being new and her just not taking the time to connect with him. All of my friends jumped on board the denial train too - Max was just quirky! He didn't flap his hands in the corner, and although he was certainly an anxious little guy, he was great with people he knew, so how could he have a pervasive developmental disorder??

The long and short of it, which you all know, is that Max has autism. Or Max is autistic. Here comes the catch. Saying that Max has autism is very different from saying he is autistic... Max has autism simply extends the definition of Max to include his autistic traits. It is part of who he as an individual is. Saying that Max is autistic is akin to saying that autistic is all he is, or that he is autistic first, and a lovely, charming little boy second. So not true!!!

I don't generally label Max. When I introduce him to people, I introduce my son. My boy. Typically most people don't even notice the autism. Yet it's a stamp on his shirt that he will have to figure out how to wear. I hope that it's proudly and loudly... and that he knows his mum always saw her boy before the label.

he doesn't hurt my feelings

Max has been at G&Gs for 9 days now. Such a long time for us to be apart. I miss our early morning cuddles, when he calls me to his room and in all his sleep-ruffled glory wraps his arms around me and tells me that he's had a good sleep (regardless of the night - which is really quite sweet!)

I've called every day. I've had lengthy conversations with his sister about every little thing that's happened, every little adventure that they've had while they've been gone. She tells me she really wants to come home, and that she really, really misses me. Sometimes she chokes up a bit, overwhelmed by being away from me.

Max spoke to me once... the first time I called. He told me he was having fun, said he loved me, and passed the phone back to his sister. Short and sweet. Everyday I ask if he wants to talk to me. Everyday he says no. It makes me smile.

I hate the phone. It's a strange device to me - empty voices (albeit often of loved ones) coming from nowhere. There's no context, no continuity, truly no rhyme or reason. Max is all about context, continuity, and reason.

Which is why I smile when the little boy I love so much doesn't want to talk to me. It's not about me, it's about him. And his ever increasing sense of self... knowing that he's safe to say no to me when he doesn't want to do something. Knowing that sometimes I'll help him to do it (if it's something that needs to be done) but also knowing that I'll let him have the space he needs and wants to be himself. Just the way he is. Without guilt. Without secret wanting to change him.

I know unreservedly that Max loves me. As he knows I love him. And in the same manner in which I would never hurt Max's feelings on purpose, I know he wouldn't hurt mine. And he doesn't.