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Making Friends

It is truly amazing how your life with a child with a disability can be. I think that it often resembles a little raft on the open sea. Sometimes it is lovely, peaceful and calm - this is when you can relax, gather your thoughts and enjoy the moment. At other times though, you are being tossed about from one disaster or upset to another, feeling totally out of control, gripping on for dear life and hoping the calm will come again - soon.

I think back to my childhood, some 30 years ago (groan) when kids who were 'special' were rarely seen out in public; and if they were, they were often avoided, pitied and not talked to. Once, an adult with an intellectual disability came up to me and wanted to shake my hand. I still recall the absolute terror I felt at having to do this. My Mother, anxious to do the right thing, pushed me forward and I did shake his hand, but I suffered nightmares about it afterwards.
Such was the ignorance of the 1960's & 70's and one would hope that it has changed since then. However, I am not so sure that the public at large are any more comfortable or educated about people with disabilities in 2001.

We knew right from the start that Peter, our second son, might have some problems with his health - because we lived with him, we could tell that his behaviour was outside the 'norm'. As he got older these 'differences' became more apparent, so we started having him seen by professionals such as occupational health therapists, speech pathologists and a child psychologist so we could maximise his potential.

As parents, we became extremely frustrated because Peter was, at times, a nightmare to discipline. He would go from one thing to the next creating havoc, and we would desperately clean up after him. Our house has been flooded on more than one occasion and hot plates turned on full are a potential disaster. Peter also likes to wander about at night, going into the other children's rooms and waking them up. As Peter's short term memory is poor we would attempt to teach him what he could and could not do, but it didn't matter if you told him 100 times, each time was like the first and he would go straight back and do it again without a moment's hesitation. He never acts out of spite or rebelliousness, he always looks at you with a bewildered face as if to say, "Oh, aren't I allowed to do that?". I'm sure many parents would understand the total exhaustion that comes from going over everything time and time again.

Our frustration was also compounded by the fact that others saw Peter as an absolute angel. He has a very happy nature and is a peaceful affectionate child, especially away from home, so it is hard to explain all the trouble this angel-like child can create. People would laugh and put it down to regular childish mischief that he was getting into, but after mopping up the house for the umpteenth time or seeing something ripped or broken again it all wears a bit thin.

Last year was Peter's kinder year and we looked forward to it with great hope and excitement, as all families do. Peter has an intellectual disability, so learning is a big challenge for him. He also has trouble organising his thoughts, memories and sometimes movement. For Peter, kinder was a very hard year as he soon found out that other children did not readily accept kids like him. He was constantly told by 'regular' kids, we hate you, get out, leave us alone, we don't want to play with you, and a host of other slights that probably went over his head. Our 4 year old did not even know the meaning of the word 'hate' before entering preschool, yet now he was hearing it on a regular basis. I really felt for my little boy when he attempted to move into the kinder's big sandpit, only to be told, "Get out, you can't play here". To say it was distressing to my husband and myself is an understatement.

We spoke with the teachers to try and rectify the situation and they were very kind to Peter, which we appreciated, but it wasn't enough when he desperately wanted to be included in his peer group. I often thought how nice it would be if 'kindness' was taught instead of box construction or finger painting.

Peter was only invited to one birthday party during the year and I am so thankful for the one or two little boys who accepted him without question and I really applaud their parents for raising caring accepting children.

At the end of 2000 it came time to decide where Peter would go to school. We knew that the local primary school (where our 8-year-old son attends) would do all they could for Peter within their own limitations but, unfortunately, we didn't think this would be enough. We worried about his ability to stand up to the teasing of older children and his kinder peers from the previous year. We also worried about his physical safety in the playground and at the ease with which he could leave the school and wander out on the road if he wanted to. He is not a 'runner' but he could quite easily get it in his mind to go for a walk and head off. This terrified us as our roads are busy with log trucks.

Our next option was to look at the special school some 20 minutes away. Have you ever noticed that the minute you mention the possibility that you may send your child to a 'special school' people start to squirm, get embarrassed or openly attack you about putting your child in ‘a place like that'. Someone actually asked me if I was worried about dragging Peter 'down' by putting him somewhere with kids sitting there drooling. Another told me not to call it a 'special school' meaning that it would sound bad for Peter.

I guess that I shouldn't be too hard on people who do not 'have' to deal with the world of a child with a disability. Until our son came out of babyhood, neither did we.

Peter is now at his (dare I say it) special school and doing wonderfully well. After a few hiccups with transportation, he now climbs on a wonderful little bus that comes right to our door and heads off to a school he loves.

The very first day he went to look over the school he was given such an open-arms welcome that he came out and said, "Mummy, they like me here". After the second visit to the school he said, "Mummy, they like me very much here". It broke our hearts to think how much the taunts and lack of acceptance from the kids at kinder had hurt him - so much more than we knew.

Peter headed off for his first day at school without a worry in the world. When asked what he was going to do on his first day of school he replied, "Make a friend".

Like all parents we want everything for our child and to be told, or have it implied, by an ignorant society that they may not get it because they are 'disabled' makes me steel my determination to see that my child has every opportunity and experience he deserves.

Lyn Fairbairn
NoticeBoard
March 2001

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