Monday, February 12, 2007

Special Needs

I have always seen fishing for steelhead as one of my special needs. It may become even more so, now, precisely because I will likely get to do it less than ever; I will have to resign myself to watching 'perfect' days, flash into view and then forever out of sight.

One of my sons, Isaac, has been enrolled in an early intervention program for children with autism. And although the doctors and therapists don't yet offer to solidify their opinion with an official diagnosis, because he's too young (13 months) they all agree that the telltale signs are present. But to Laura and I, who see him every day, and every day watch his brother perform all the feats of a normal child, this announcement is "as the footsteps of doom," foreseen and yet long feared.

I can't offer even the barest smattering of what goes through a parent's mind and heart, when this kind of news is delivered. Because no matter how anticipated it was, we are suddenly bereft of our denial. My first thoughts were only for Isaac, that this is like a death; the person we hoped he would become, has been somehow removed from his future. And despite the therapies (physio, floor play etc), wich are already showing results, his lot in life will never be easy and there may be much that he may never understand, that we lucky ones take for granted. Having a sweetheart, scoring a goal, skipping a stone over the surface of a lake, wading through a shallow run in May-time. My fears no doubt only make this worse, because Isaac is going to be Isaac no matter what, and all of us (Samuel included) are still engaged in learning who that will be. For example, Bill Gates is said to be mildly autistic (Asperger's Syndrome) although he has never formally been diagnosed. Who knows?

Not knowing is possibly the most difficult part. Perhaps (at the extreme risk of being perceived as sexist: Men are from Mars) by virtue of being male, I know that no matter how hard things get, and how exhausting, I will have my temporary single-minded testosteronic escapes; watching a Leafs game, fishing in the early morning, sunday night rec-league hockey. But I see no such escape for Laura; who is at the base of everything to do with Isaac, and for whom he reaches out night after night, when he wakes up howling - for what reason, we don't always know. She doesn't want a spa day, or new clothes. No flowers for valentines, no gifts; all she wants for all the world is that her little boy be alright. I see her thrust her entire being into this enterprise, and I marvel that she hasn't crumbled under the weight of it. All I can do is attend to her needs to the best of my limited abilities, like a doctor at the uneasy dreamer's bedside, wiping the brow and now and then enticing a small sip of clear water; but the fight is going on inside, her own solitary side of the fight.

But enough of all this joyful talk!

Enter Stacey's blog "The Willowjak Boys" which was referred to us by the friend of a friend (if Stacey is reading this, Nicole told Gillian who told us :). It's a beautiful and informative blog, which tells the story of their family but also contains helpful information and, my favourite so far, an extremely touching, wonderful, awe-inspiring clip about Rick and Dick Hoyt. The video is about a father and son, who enter marathons and triathlons together. The son is paraplegic from birth, and so his dad tows him, and pushes him along; all because at one point the son had expressed that taking part in this sort of activity made him feel free. You can tell by his expression, in the video, that this is true. You can read about it here. Thanks to Stacey for digging it all up and posting it on her blog!

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10 comments:

Anonymous said...

I love your writings and good things will come for your boys...Don't worry, Be Happy as the song says.

Keep your spirits up and just be you and all will work out in the end.

Ciao,

T:)

SD said...

Think not of it as a "death", but a journey of a different porportion..

One where, although the trials & tribulations will test all of you at each & every turn. The small steps gained will mean that much more when you see the joy in your Son's eyes, at the smallest of steps in progress.

Constant prayers & thoughts with you & all of yours..

Trotsky said...

I don't know what to say.
My heart goes out to you whole family.
I will say this,...
That child , regardless of the diagnosis, is damned lucky to have you as a father.
Good luck with everything.
Gene

PaulGHurtubise said...

Thanks SD. Much appreciated. Speaking of laughter, that's pretty much the best part of it. Isaac laughs a lot, and he loves playing with mom & papa. He's a very good sport for his age :).

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PaulGHurtubise said...

Mille grazie, bello!

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PaulGHurtubise said...

Thanks Gene, just keep your blog up & maybe we'll meet on the testa grande some day :) With luck, Isaac will outfish us both.

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Anonymous said...

As the father of 2 young kids myself, I try and put myself in the same situation and find myself overwhelmed. However, Isaac is fortunate, there's no need for prayers. With Laura's strength and your optimism and good humour, all this means is things will be different. Not better, not worse, just different.

Don't worry Paul, everything will be fine.

PaulGHurtubise said...

Thanks Mike. We're fortunate in the sense that this is happening now and not 10 or 20 years ago, when knowledge & therapeutic techniques were not as advanced. We're slowly becoming psychologists & therapists, now, and have been blessed with good results so far. Isaac's rate of progress over the past 4 or 5 months (before we knew he was autistic) is probably triple what it was in his first 8 months. Our part is merely to continue, care, play, love, teach. Just like any other child, but with an added difficulty (and worry).

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theweescunner said...

Merdus, I was a bit taken aback when I read your blog. As you know I have kind of been off line of late with my own traumas to deal with but I must say that you and Laura are loving parents and I would not look at Isaacs situation as a death. You never know what will transpire. He may surprise you. I am sure with that Norman blood in him coupled with the Irish blood he will be a stubborn fighter. I have no doubt he will be out fishing you. He is a happy,well balanced and well loved child which is half the battle. The last time we saw him he was laughing and responsive and a great joy and addition to your family.

Much Love JMacK

PaulGHurtubise said...

Thanks Jmack. He is a very happy little guy indeed. "Death" sounds strong, implies finality, but there's a certain finality to it which is hard to describe. But again that was my first impression, when I first got to grips with this thing. There is, for any parent, a period of mourning; but then life goes on. The Phoenix rises .... So, the giggling little irish/norman sprite pushes and pulls us along, and we are quite happily defenseless against his charms. :)