I went to a smallish meeting held by some local groups and the local ALP members last night. Linda and Libby came with me thank goodness as I was there as a representative of the HAGS group. The gentleman that organised it, James, had got our name from a local member of parliament and had been told all about the HAGS so I felt it was important to go along and let us be known. It was a bit nerveracking as generally as a rule I don’t like to speak in front of others. Yes, it’s true! Hard to believe I know but I’m actually quite shy in those sort of situations.
There wasn’t as many people as I thought. James introduced us and then asked me to talk. I basically talked about why we started the group and why we are called the HAGS. (Happy Autism Group Support). One lady actually commented on the ‘unfortunate’ name to which I proudly laughed and said that we loved it! We chose it after all. And it’s a name that is remembered and known all over the hills now.
I then went on to talk of my personal frustrations with the problems I am having re the high school. I explained that there are more and more kids like my Bethie who are too high functioning to be considered for special schools but too dependant to go to mainstream high schools. Most of the kids in our group are in the higher functioning category. In fact the ‘typical’ autistic child seems to be these days. I then went on to say that unfortunately it’s probably too late for Beth as far as the autism specific high school is concerned but the laws needed to be changed. I explained that it was ridiculous that the fact that Beth is autistic doesn’t mean that she has an intellectual disability. That should speak for itself. I was quite proud of myself. My voice cracked near the end but I stopped the tears – just – and finished off. I think that people knew but that it made it all the more personal which we needed.
Libby spoke well as if she was a seasoned professional. She spoke of her frustration of having to battle all the time to get her son an aide in his classroom full time. She has worked with advocates writing letters and done so much, I was in awe of her. I personally can only speak of my plight and I do so with passion but Libby can speak on behalf of others and she knows what she is talking about.
After all the groups talked about themselves some of the pollies came over and sat at our table. They were very sympathetic to our needs and we got cards and suggestions. Libby wants to start a lobbying group. One of the men spoke of getting the secondary school off the ground fully by 2012, an enormous undertaking but hopefully one that may give me my dream. A lady from the Tecoma action group that won the battle to stop a huge supermarket being built said that we had to have steps to aim towards and a plan of how to get there. Another lady said to study up on overseas schools and see what they have done in this situation. And above all get letters and local support from everybody that we can, teachers, parents of other kids affected by our kids, anybody we can think of. As Libby pointed out, it’s not just your child affected but all the others in the classroom.Â James had the example of a small school who had 5 kids not funded who needed it in prep one year. They had to cut the schools arts program to fund the aides for these kids. How unfair that the whole school should have to suffer because our higher functioning kids aren’t recognised as being ‘needy’ enough. How disgusting.
Unfortunately, as I wrote, it may be too late for Beth as we only have 18 months til she’s due at High School. I just spoke to the local High School near to where we will be living. I suggested Beth be there for the core subjects and instead of being supervised in their integration room, having her come home to me. The lady I spoke to is going to call me back. She thought it sounded like a feasible plan. I need to put something in place to be prepared in case my first option isn’t available. And the reality is, I don’t think it will be.