My youngest has had a difficult week, struggling from the heat, noise levels within the classroom, boundaries of what is expected and wearing the school uniform as it irritates his skin. He has been extremely tired when he comes home...mentally exhausted and his Autistic traits are heightened. When this happens, it is basically "action stations" here at home. I need to ensure he is eating well, drinking lots of water, that the house and his bedroom are cool at all times, that he has Epsom Salts in his bath each night to help his muscles relax, that he is in a good sleep pattern and given "down time" (basically he can just choose whatever he wants to do, with no demands placed on him). I am finding that he doesn't talk much when he comes home, just lots of little noises. The first thing he seems to be doing is taking off all his clothes and standing in front of the dining room air conditioner. Thank-goodness we do not have too many visitors in the afternoon.... his nudity can be a bit confronting for some. He has been not venturing out-side to his round trampoline as he usually does, bouncing for hours on end, due to the heat. We have been regularly going to he local pool for a swim in the afternoon, where I watch him, splashing and jumping at first, then quietly floating or submerging in the water as his body seeks out the release from the water pressure. Yes he is amazingly different after swimming. My little man has always has been though. I think this will be the "key" for stress release and resetting his mind. We all know the effect of exercise has on us mentally, releasing those endorphins and helping us "cope" with all life's little changes. Like most parents, the problem has always been access private lessons for swimming with an appropriate instructor to meet my son's needs. We had found a wonderful program at Sam Reilly's Swim School in Everton Park, but since his instructor has just recently moved onto bigger and better things, I am now trying to seek a new avenue. To be truthful too.... this program is certainly not a cheap option, but it was all that was available at the end of last year. Don't get me wrong, a wonderful program... just expensive as you need to cover fees for 1 to 1 lessons.
Like other families we are continually applying to Disability Queensland for funding assistance to help with this sort of cost. However if any one reading this has ever before tried to seek help through Disability Queensland, you will know how difficult that is. Our family has been rejected for funding 4 years in a row now. This makes the possibility of trying to fund therapy almost unattainable. I guess I am feeling the "pinch" more so than ever as our Autism funding will cut off on my son's 7th Birthday, in April this year. From then on I know there is very little available to our family to help cover his needs. I have been searching for a while now, as with his school, just to seek out avenues for support. But so far we have been unable to find any resources.
This of course raises the absolute need for reform from Government, and this is why people are so enthusiastic about a National Disability Insurance Scheme . So as a mother of children with special needs... visit the website, read, talk about it to people you know, sign the petition.
At present a "Productivity Commission" is investigating the need for such a system (NDIS). We are all holding our breath, hoping that finally a long-term care and support system will be installed in Australia. The Commission will release a report next month, before a final report on 31 July. It has been proposed that an NDIS would be a no-fault insurance scheme funded by all taxpayers through general revenue or as an extension of the Medicare insurance levy. It would provide personal support, therapy, aids and equipment, home modifications, and employment training for all people who are born with, or acquire, a permanent disability at any stage during their life. Did you know that currently, 1.4 million Australians have a serious disability and by 2030, there will be around 2.9 million people with a serious disability in this country and on top of that, consider the thought of family and friends who are now providing personal care to people with disabilities. This is an enormous epidemic. Unfortunately even if this scheme is approved, it will take years before it will be functionally implemented. I know what you are thinking.... not extremely helpful for our family or maybe your situation right now, but think of the thousands of people it will help in the future.
So until that time when more support is available, we as parents must band together, discuss, educate and seek out ways of helping each other. Please do not hesitate to share thoughts or links with those around you. Our children have the right to freedom of life.
"Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed."
Martin Luther King, Jr.
Martin Luther King, Jr.
Here are some links you maybe interested in checking out.
1 comment:
Thanks for including the links.
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