Friday, March 9, 2012

Expectations

I has been around 2 years since Little Man was diagnosed. Sometimes, it amazes me how naive I was at that time. Of course, I was crushed. To say the least. But I had the impression that with help and therapy, within a couple of years, he would be speaking - at least a little bit - he would be toilet trained, he would be doing all sorts of things. Oh - and I would see what he was crazy good at... you know, all savant-like!

None of that has happened.

At 4.5 yrs, he still cannot speak, toilet training has been a dismal failure so far - he is still essentially in nappies. In terms of all the goals and expectations I had for this point in the future, nothing has been achieved. And I definitely can't see any fancy-knock-your-socks-off kind of talent in any specific area. He struggles with almost everything.

Yet strangely enough, I am not as disappointed as you might think. I guess that over the years, I have come to accept things the way they are with him. He is how he is, and that's just the way it is. But there is a danger in this, and the danger is that I can become complacent. Stop trying. Not necessarily give up, but rather just go with the flow. Do what is easier. Do what works rather than push the boundaries and try to teach new and better ways. Correct ways.

Something I so often notice in parents of ASD kids that I have met, is that there is a huge amount of bitterness. Honestly, I cannot blame them. The disappointment you experience... the pain...when you find out your child is autistic.... it's almost unbearable. Bitterness stems from disappointment, and there is only so much a person can take. I have bitterness in life - I wish I could say I didn't. I wish I could be one of those joyful ones who just continually look at the bright side. But I am just not one of those people. I'm not wired that way. If I have to be completely honest, trying to be that way nearly destroyed me.

The thing is, the bitterness I have does not come from the disappointments experienced with my son. I am surprised by this, really. But it's the truth. My bitterness comes from other pain in my life. My son... well... The disappointment and pain only gave birth to a new hope for him. There have been many occasions where I have had to reconsider my expectations of what he is going to achieve at various stages in life. I went from thinking he should be speaking by four years old, to thinking... I am certain he will speak, but it might not be till eight, or nine, or ten. Even twelve or thirteen. It might not be for ages. But I'm still certain it will happen. It's more a postponement of timing I suppose.

This hope I have for him and for his life, it isn't a forced hope. It isn't one that goes "I HAVE to hold on to hope or I will die!". It just seems to be there for him. And I don't really know how I have managed to be this way.

I have come to accept that he may never get married and have a family. He may never drive a car, have a job, have a house. This is ok with me. Yet I still hope for that for him. My deepest desire for him is to know God and be content in life. Happy. Getting married does not necessarily equate to being happy for people, and if he has no desire to, then I am not going to pressure him. And if he is comfortable using public transport to get around, then great! I do hope for these these, but as long as he has found some purpose, some pleasure in his life, then I am satisfied.

One thing I haven't yet come to accept is the notion that he might never speak. For some reason, this is a big issue with me. I refuse to accept the possibility, even though the odds are stacked against him. I don't know why this is so important to me. I wish I did. I just know that it is.

So in two years, and essentially, 10 months also (we knew he needed help before the diagnosis), with all the early intervention we have sought and done for him, there has been so little change.

This is not where I expected to be in 2 years.



xx

2 comments:

  1. i know. we've been at this for 6 years and my daughter is not where i'd imagined she'd be. but i can tell you that in the past couple years i've seen her make great strides - they would not look big to other people but i know how big they are. you will see the same for your sweet boy. you will.

    i'm sorry for the bitterness you have (from other pain in your life). i get that, too.

    hugs to you, friend.

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  2. I am standing with you, he will speak one day. I believe it with all my heart. He is just waiting for the right time...

    xx

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