There are times when I feel so bad for claiming any rights to disability funding. My son can walk, talk, plays sport and now attends mainstream school. He wants to study Sports science at University. My heart breaks for other disability careers who are required to provide 24 hour intensive care for the life of their charge.
Still, our son has Aspersers syndrome and we are another face of the disability community. My son is extremely private and so I am unable to campaign on his behalf publicly. He just wants to fit in like any other teenager! Like so many others our journey has been one of isolation, grief and an overriding pain as our son failed to succeed in the wider community. Mostly we were seen as weak and ineffective parents. My son is not obviously disabled, in fact in many ways he appears highly capable, so many put his difficulties down to defiance and he received little or no sympathy. Even after he was diagnosed he was put in the too hard basket by educators. Eventually we removed him from school and home schooled him for three years. There were no specialist programs available to us. At that time AQ told us he was not suitable for their program and anyway he had to attend a school to access this.
By this time I had realized that school was not going to work so we commenced the long slow process of rebuilding his self esteem. He is now somewhat successfully attending school almost full time and is generally a happy and well adjusted teenager with good friends and clear goals. We still have an ongoing problem with school refusal. Those early years have had a disastrous impact.
Still we are no longer managing extreme behaviour and feel that we can now imagine a future without prison, mental institutions and general social failure. We have received no funding apart from that available in school, or through Medicare. We have had no respite and I have not been able to work or complete my studies. I must admit that we didn't really try to get funding I always felt that we were the lucky ones. My son will be able to live independently in the future and I will be able to pick up my life. My husband has been able to continue working although he has had to carefully select jobs so that he could support us.
It has been hard but there are many facing much more difficult situations. I would like to see all people with disabilities funded so that they can access life and live as productively and happily as possible.
The Author wished to remain known only as ParentOnTheEdge