Janet’s story

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“It’s been important for me to be his advocate, because if I didn’t do it, no one else would! … Charlie being diagnosed with autism has just changed my life completely. I’ve learned so much now, I want to help other families.”

On this page:

Choosing a school

I didn’t really know what school to pick for Charlie, because I didn’t know initially if he was intellectually impaired or not. I got a lot of support from kindergarten teachers and experts, to help me pick the right school [a nearby mainstream Catholic school]. And I really listened to the people I trusted on that, rather than throw him into a school where he was out of his depth.

I had a friend who had a child with a mild disability. And she was really well supported at the school. And when I was at the school, I met some children who were a bit further down the track, who also had disabilities. And they were really happy, so that was a good sign.

One of the reasons I chose the school was because I had friends at the school. School friends, school parents are a big part of our social life, and that’s really important to our family. And when there has been issues with him socially, I’ve been able to ring up a friend, instead of ringing the school, and deal with it that way. Some weeks Charlie will just want to play by himself, and he doesn’t quite know how to break into social interactions again with other children. I just pick up the phone and ring a friend, and then they tend to include him again.

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Early on at primary school

When Charlie first started school, I made a booklet about him and his condition, and where he was at. And I gave that to the school, and they really appreciated that, because it helped them understand him better, and his teacher was able to help him more during the year.

The school and I have worked together with Charlie. They seem to appreciate parents who are more proactive, by getting him diagnosed fairly early, and having done a lot of work before he started school. Without the early intervention, Charlie probably would have been non-verbal when he started school. So they were really grateful that I had put in some hard yards in prior years.

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Keeping in touch with school

I keep in touch with the school via the principal or the teachers. I keep in regular contact with them – having a chat if there’s an issue that’s come up, and something that needs to be dealt with on the spot. If I need to talk to the principal I’d make an appointment, and if I need to talk to the teacher I try and speak to them first thing in the morning, or just make an appointment.

I touch base with the school once every semester, with the Parent Support Group teacher, his aide and his teacher. And we have a little round-the-table meeting about where he’s at, and any issues that he has. And often they’re just social issues. Not usually academic issues any more. Whatever is happening at the time.

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Advocating and sharing information

It’s been important for me to be his advocate, because if I didn’t do it, no one else would! When I’m dealing with people, I try and deal with them in the most positive way possible, and sometimes they don’t see solutions for him. I might have to bring some in.

When I go to a meeting for my son, I try and go in there with a couple of solutions, if there’s a problem. One of the issues that my son has, was he started to pull out his hair, which was a nervous anxiety condition. And I’d actually had that condition as a child, so I brought my own experience in, and I wrote a brochure about the condition, gave it to the school, and suggested giving him a necklace that felt a bit hairy – something that he could play with, to stop him from pulling out his eyelashes and hair. So they didn’t know about the condition, and they were really grateful, because many children suffer from hair-pulling and similar types of nervous condition. So it just made the teachers all aware, and the principal was really supportive.

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Getting involved in the classroom

In grade 1, that was a really important year for Charlie, because it’s not as touchy-feely as prep. So I decided to help out in the classroom, to learn from the teacher how I could help teach him, because I don’t have a teaching background. And also to see how he was going socially, and see where he was having difficulties.

Within that, I made some resources for the classroom to help him and some other children that were struggling with things, for instance doing words, adjectives. I made a booklet for his classroom, and that helped him get through some difficulties in the year.

Being in the classroom, I developed a good relationship with his teacher. Just being there really helped her and I work on strategies for Charlie together.

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I’ve learned so much

It was hard at the beginning when Charlie was diagnosed, because I didn’t really want to accept that he had a disability. But I didn’t have a choice, and I came round to the idea of helping him fairly quickly. Early in the process, I was told that the buck stopped with me, so I had to look out for him. I think the way I coped with it was just getting as interested in his condition as possible, and making it a big part of my life, and probably mono-talking autism to my friends for about two years!

Charlie being diagnosed with autism has just changed my life completely. I’ve learned so much now, I want to help other families. I’ve applied for uni next year.

One of the things that has really changed for me since my son got diagnosed is that I do take some more time out for myself, when I can. And my thing that I do for myself is to keep as fit as possible, and that’s completely changed for me.

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