Monday, March 9, 2009

Trying to find my way

Parenting my baby boy challenges me.

Not that I'm suggesting parenting any child.... or my other two children, is ever a cake-walk, but I find myself feeling lost so many times when it comes to my youngest boy.

When he was five, he was diagnosed as "being on the autism spectrum of disorders".

How's that for vague?

It was explained to me that the Autism Spectrum is like a rainbow.... a whole range of behaviours and developmental delays.... with full blown Autism at the furthest end, syndromes like Aspergers being slightly behind that and all the way down to children that are really borderline.

My boy was one of those, perhaps barely on the spectrum, children.

I accepted the diagnosis.... asked for it even. It was the culmination of several years of trying so hard to fight for the additional resources I KNEW my boy needed - even though we had no label, no banner to fly, in our struggle to secure them.

He started speech therapy when he was two, and he was granted funding for an additional aide/worker from the provincial child daycare office sometime before three.... but the schools were much trickier. There are so many children who should really have more help than they do but the resources are so difficult to tap into that many are left struggling without.

My son was NOT going to be one of those.

Specialists, my pediatrician explained to me, are reluctant to label children these days. Once a diagnosis is written down in black and white for all the world to see, it's very hard to shake later. So they waiver, and they hold back - and the younger the child is, the more difficult it is to get an answer out of anyone.

So when we sat with the Doctor in the Child Development Clinic after yet another assessment where they pointed out to me where all his delays and inconsistent behaviours were.... and when she finally asked me, point blank, what I wanted her to do, I told her straight up:

"I want the label. I need a diagnosis. If I don't have something concrete to take back to the school board, he's not going to get the help he needs - and he needs the help."

She agreed. And so there we were with "Behaviours consistent with the Autism Spectrum of Disorders".

I embraced it because it was a tool for me to use as I slashed away at the bureaucratic red tap standing between my child and the help he needed. But I never really did own the fact that my child was on the spectrum.

He just has speech delays, he's just a little slow to meet his milestones, he'll catch up eventually once he has the help.


But as he ages, it's getting difficult for me to deny any more. A handful of his behaviours, that seemed a little quirky but could be written off as age-appropriate silliness before, just look more and more off now that he's older. The skipping back an forth across the room - that used to be amusing in our energetic toddler, is now painfully, obviously the self-stimulating coping mechanism that it is. He skips to calm himself when he feels overwhelmed or at loose ends.

The repetitive play patterns; the animals he still routinely holds in both hands. Age appropriate at three or even four.... but just a little off at eight.

He's smart. He can do most of his school work at grade level with no difficulty... as long as his aide or teacher keep him on task. Getting side-tracked is too easy for my boy.

But his biggest difficulties are social. He's way behind socially. It shows in his sense of humor and the attempts he makes to interact with the other children. I haven't had a Doctor pin a number on us, but if I had to guess, I would think he's like a 5-6 year old child developmentally.

Which endears him completely to the adults in his life. My son has always been loved and adored by the people that come into contact with him: family, care-givers, teachers - he brings smiles to faces and warms hearts all along the way.

But it's killing him socially.

He knows he's different now, which he never did before. I'm not sure when the awareness dawned, but he knows there are jokes that go over his head. And he hurts with the knowledge that not all the kids want to play with him because he doesn't interact the same as everyone else.

And I don't know how to help him.

It hurts my heart to hear him call himself stupid.... or to watch the tears roll when he proclaims that nobody likes him. He's starting to feel isolated and I just want to wrap my arms around him and protect him from all the nastiness in the world.... sooth his hurts and just make everyone be nice to him.

But I can't. And the powerlessness of it all kills me.

Emotions run high in my boy. All of them. When he's happy he beams with it, when he laughs it's without restraint. When he's mad, people may have to dodge flying toys, tipping furniture or slamming doors (although this is getting better as he ages). So it's no different with hurt feelings. Getting in trouble at school or daycare, a harsh word correcting behaviour from Mom or Dad.... these things are the end of the world in his little universe. The tears flow freely and, more and more, he berates himself and tells himself that he's no good - over the simplest things it seems.

The other evening was hard. He was just having a very bad day. His brother said something mean to him (or maybe his sister did something?) and he was crying, he tripped coming up the stairs and hit his shin so he was crying, he did something wrong that his Dad yelled at him for and the tears came again... all within the hour we were home before heading out to Beavers.

I left the house with him, a little early, to drive to Beavers and tried to settle his frayed nerves. Told him to take deep breaths and talk to me... and he came out with: "Everybody hates me, I'm a bad, bad boy!" ....sobbing....

It hurt my heart to see him that way, completely defeated and crushed, crying tears from a wound I couldn't just kiss better or cover with a band-aid.

When I asked him who he thought didn't like him he listed a friend from daycare, another name I couldn't understand, and his DAD.

No wonder he was sobbing.

We took a detour to the local coffee shop/ice cream parlour and sat down for some one on one, a little treat, and a chance to sort him out before going to Beavers - he was in no state to be dropped off.

It took me the better part of 20 minutes to coax a smile out him again. To help him realize that his father loves him more than anything else in the world - even if he gets mad at him over something... it doesn't matter. To make him see that just because one boy didn't want to play with him at daycare today, it doesn't mean no one ever will - what about all those other friends that DO play with you my boy? 20 minutes of soothing, and patching his oh-so-fragile self-esteem.

When we finally climbed back into the van, he smiled at me and said "I'm a smart, happy boy." Which he was again, for now.

But I know this is just the beginning.... it's not going to get easier as he gets older. And it hurts me so much to see this beautiful, charming boy exclaim feelings of hating himself, or his life, at the tender age of eight.

I hate not knowing what to do. I hate not being able to fix. I hate feeling so inadequate when it come to parenting my baby boy.

I can only try. And love. And hope we can guide him through.

I just wish I didn't feel so lost. I wish I had someone to tell me: "Do this and it will all be better."

I know it's not going to be that simple. I guess sometimes we just have to stumble along and try to find our way.


Anonymous said...

Shannon - you wrote that beautifully ... and I can almost quite literally feel your pain and discomfort!

I too know the feeling of "wish someone would just give me a manual" and things would be ok.

Know (and remember often) that you are the best momma that little boy could ever ask for ... and you'll both find your way. I promise!

Mbdiamond said...

Thank you Naomi. I always struggle with sharing when things bother me... because I know my problems are trivial compared to some others have to face. But the support means something. Thank you.