It was a tragic as a blue clear sky after days of rain

trag·e·dy (trj-d)Of course I can remember, more than a decade ago, watching my son and worrying. So many little things that each by themselves were nothing to be concerned about, yet when put together it seemed obvious, to me, that something was going on.

But not every moment of every day was filled with worry. There was so much joy and peace in my house. With Little Man only one year younger than Princess I had my hands full, true, yet I love my children. Thank Goodness for BB (Big Brother) who was always there to hand me a diaper, catch the Princess and rock Little Man when I needed the help. Princess loved Little Man so very much.

She loved him as she let him take the blame for the toilet paper incident.

She loved him when she dumped that 5 gallon pail of flour on his head. (Just as a side note to other parents out there-you can NOT wash flour out of hair. Water and Flour = Glue).

And I am sure she loved him when she decided to paint his fuzzy head with diaper cream too.

(You might have guessed that Princess was one of THOSE toddlers that gets into everything.)

Little man rarely got into mischief-and never on his own.

While I found watching him figure things out to be a fascinating pastime, I was concerned about his seeming disinterest in the people around him.

I talked to the health nurse, my doctor, my husband, my mother and my friends. Yet no one wanted to look at the whole picture-they all assured me that each of the behaviours I pointed out were so very typical. I was so tired of being told that children each develop and learn at their own rates. I was frustrated and in all honesty, worried too that maybe I really was imagining it all.

Looking back I realize that I was not explaining myself well and the feedback from family and doctors was well meaning. My family, friends and husband all love Little Man-just the way he is-which is a beautiful thing. Princess spoke for him-that could indeed explain the speech delay. Heck, there were days where I SWORE they had a secret language, just like twins.

My son did not look up at me when I spoke to him. He could hear me just fine-he would stop moving for a moment when I spoke, but he rarely would look at my face.

He did, however, like to lean back against me.

He did not initiate play with his sister and unless she made incredible effort to be part of his play he would not acknowledge her. He would only play with his trains. He threw incredible fits for no reason that we could discern-the first time he did this I thought he was having a seizure. He did not seem to react to tone of voice appropriately, or facial expressions. He walked on tiptoes and never did crawl. He had no interest in potty training, freaked if his hands got sticky, would not play in the sand box if it had any damp sand. He did not talk. He had a half dozen words until he was nearly five. Sometimes they were used in context, sometimes not. He rarely reacted to what was said to him. The sound of music brought on fits.

As a mom, of course I was worried. I had his hearing screened, his eyes tested (try those tests with a child that does not let you know that he understands!) When he was approaching 4 years I used his fascination with Thomas the Tank Engine to potty train him-it was incredibly simple yet he still wets the bed frequently.

When he started school the teachers did notice some difficulties. He received speech therapy (still does) and they recommended a psych-educational assessment. He refused to participate in circle time, gym, singing, dancing and various other activities. My days were spent in the classroom with him as temper tantrums were frequent. I waited for the psych-educational assessment and continued to teach my son coping skills.

Having the school teachers recognize that something was going on with my child was wonderful. More importantly, to me, was a parent I met who's son was also starting school that year. Her son was simular to mine in many ways. I pointed it out to her the one day with a flip comment like "Both our boys ignore the other kids, huh?"
She answered me with "My son is autistic too." I remember being startled. Autistic? Isn't that banging your head, flapping your hands and talking in a monotone?
I told her the truth, that I had no idea what was going on with my child-other than he was frustrated and struggled with things that other children his age seemed to have no problems with.

(Interestingly enough, our children took a shine to each other. )

That day marks the beginning of my education concerning autism. I remember how relieved I was to have a name for what was going on! Having another parent to talk to that had experienced all the same concerns was also an extremely wonderful experience.

Of course there were days and moments of worry, coping with behaviour I did not understand, dealing with people in public who also did not understand.

But it certainly was not a tragedy.
It was not a disaster.
No loss of life.
No devastation.
No disastrous event.
Heck there was no event-there was no one thing that happened where we could say AHA! That event there! That was AUTISM!

As for other mistaken beliefs I have come across in my own personal experience:

My son does have feelings, an incredibly sharp sense of humour and the ability to express compassion. And by the way? He heard you ask me that. He is not deaf either. I was amused when he asked me "Does it not show a lack of compassion to say such things?" in reference to your words.

My son does know right from wrong. And it is very rare that he will do something that he knows is wrong. If there is a rule he has been taught he follows it. And expects you to follow it. He will happily let you know if you are not following a rule-not to be mean, but rather because sharing what you know is the right thing to do.

While my son does need the safety of routine he does not start yelling and hiting his head (rainman referrence) if his routine is disrupted. There was a time when every seemingly minor change in his schedule did result in agitation (as in anything from needing to rub his hands over his side pants seem, over and over while humming softly to typical tantrum that all toddlers seem to throw from time to time)-yet this has lessoned over time.

My son can speak. Eloquently. His speech does lean toward more formal and slang is rarely used. In social situations it takes him longer to respond than a NT child might need. My child does not name-call, insult to hurt (although if it is a truth he will say it not understand why this truth might hurt feelings, ie 'please do not sit in that chair. That chair is not for fat people. Use this chair. This chair is safe for fat people') and he does not say things he does not mean. In twelve years he has lied to me FIVE times. Three of those were an attempt at sarcasm.

My son does not equal autism. He, like every other person on our planet, has his own combination of personality traits. He does have autism. He does process situations differently. If you met him you might not even notice.
(Depends on the day and what he was doing and the context of the situation you meet him in.)

My son does have a sense of humour. He has a very sharp sense of humour.

My son had to be directly taught and coached in social situations. He points out that there are rules for social sitations that NO ONE follows. That some of these rules require telling LIES.
He is right. Sometimes he simply does not find it important to 'fit in'. I have noticed that this happens when his NT peers are being...well... mean. My son does not bully. He does not crave popularity either-he will happily tell the popular child that their choice are incorrect and why.

My son does not see physical differences in people. He can not tell me if his classmates are white or purple. He does not notice speech impediments, or care if you are in a wheelchair.
Same with facial disfigurement, stims, twitches and any other such thing that a NT child might feel is a stigmatism. He classifies people as 'nice' 'not nice' 'my friend' and 'not my friend' as well as 'child', 'adult' and 'teenager'. Lately he is differentiating between 'boys' and 'girls'-mostly because one young lady has decided she will in fact by my sons girlfriend.

Yes my son does have behaviours and speech patterns you might find unusual. Feel free to ask him about them. He values people that are honest enough to ask. He will talk frankly about pacing in a circle. Some 'stims' he does not even seem to realize he does.

Little man is working on his own post.

1 comment:

  1. I'll looking forward to reading Little Man's post.


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