Parents broken by lack of support in raising special needs vulnerable children - It was so great to see the police go out and search for the 12 year old, autistic non verbal boy who went missing last Saturday. I was truly worried when he went missing for three days that’s a long time, but was found in Auburn in a stairwell not far from the police station at all, so glad. It is something all parents of vulnerable children like mine, worry about, with a son or daughter who cannot speak and cannot say where they are, or who they are, or that they need help, we live on the edge thinking will they will get lost, be hurt, go missing? Yet this boy was found after three days we thank God, and we continue to worry about our children. What will happen to them? Parents need support - I prayed for this boy to be found and I felt for the parents I was so happy for them when he was found. http://www.theguardian.com/.../hussein-al-mansoory
Its ironic that police will send a hundred policemen out to search for a missing boy with disabilities but will do nothing when one of our non verbal children is attacked by a worker. When they come home bruised and battered like my son who is adult now but still vulnerable. Hit to the head on one occasional police refused to question the worker or investigate saying she would just lie. What kind of answer is that? I complained to the police commissioner three times about the local police and he said this matter is closed. It is not closed for me or any other parents who live in a state of anxiety worrying what will happen to our so vulnerable children.
Many workers who have no idea how to care for a disabilities person and is being paid by a ‘provider’ who also has no idea about disabilities and is in it for the money. Or workers can have experience but no compassion for those they care for and are also seeing it as a money maker and nothing more.
They will search for the vulnerable child - yes there are child protection laws – but they will not protect them or investigate when they have been harmed. There is meant to be duty of care laws but they are so vague that they are not upheld here in New South Wales - without cameras said the policeman to me the first time my son was assaulted there is no crime. Hence my push for CCTV to protect our vulnerable children.
A person told me recently they had cctv on them in the office of a brokers where they worked so that the employer could watch them. Just overkill in that case, doing that to office workers seems strange - yet why are they not putting cameras on the places where the most vulnerable are being or supposed to be looked after for the day or in residential care. Yet no they do not. It is not against the law and the NDIS says it is allowed but they will not make them have the cameras. Instead the NDIS enjoys watching the providers receive the money in their coffers and get rich. There was not even a manslaughter case when young Merna died through drowning at an Afford Disabilities group home – no charges - no care.
We were taking my son out recently and I met a mother who told me she also had a non verbal little boy of four, when she saw James with me playing his music and being quite noisy. Don’t worry she said I have a beautiful son who is non verbal too. James has fragile x syndrome which is genetic, one damaged X gene I never knew I carried. What will we do she said – so many children with autism yes I said its more than genetic there is also theory that it is environmental causing mothers to develop antibodies in their body from our toxic world, affecting babies, as there is no one gene for these autistic children. It is increasing every year - once it was one in 20,000 thirty or more years ago then ten years ago was one in 80 children, then one in 50 children now one in thirty children. Soon everyone will be autistic she said and started to cry and we hugged I realized she felt really alone - how do we raise a child with the inability to talk who could be exploited all his life. I have no one to talk to who understands she said. You can talk to me anytime I said. I remembered when James was really young and we just found out he had Fragile X I had a husband then but it was still bewildering and frightening and we worry for our children’s future.
Mothers and parents of disability kids need support. Too much society is ignoring the need and not giving support. While the next generation of children and youth become so wired up to the technology they are not developing empathy and social skills for the real world. They become living in their virtual world and will not reach out. One day it will hit them hard. Because resilience comes from human relationships and they will not be young forever.
The lovely mother also told me her son had been rejected from preschools because he was autistic and nonverbal. I couldn’t understand this, I said my son just had his own worker at a preschool when he was that young. Why aren’t they helping? Yet the Royal Commission made a split decision on a recommendation to make all special needs classroom be shut down and special schools. Should they do that its going to happen that, it is possible that no mainstream school will let special needs children into their schools then, as it is already happening, because special classrooms are needed to meet the needs of those children as a mainstream classroom with a mainstream teacher just cannot. The Royal Commission is not facing reality. Are they living in la la land? Or is this just a decision for the government to turn its back on special needs children? Make funding cuts. Yes there are high functioning autistic children ie Aspergers. However there are many many like the little boy who went missing and this mother’s child who are severely impaired and cannot speak or look after themselves you cannot just throw them into mainstream without a support worker – and if a school doesn’t want to have support workers coming in or deal with it they will reject those more needy disability kids.
Already noted in a past article a little seven year old girl who was suspended from mainstream school many times because the school could not handle having her there and did not want to support her. Straight after the Royal commission split overt recommendations to shut down special classrooms and special schools. The mother is calling for more special units in schools and more special needs schools. This is the reality.
https://www.abc.net.au/.../mother-demands-more.../103220382
A few parents approached me when I mentioned I was trialling James on CBD oil (no THC) to see if it would help his development and even speech as it has in some research articles regarding Fragile X kids and autistic. They said they didn’t want their child ‘cured’ of fragile x as it would stop them being who they are. Sure I said but if someone was blind and a medication could make him see – how would that stop him being who he is? Its not so much a cure as treatment for a brain disorder. Or if someone in a wheel chair could walk wouldn’t that make them happier how would that change them? Another woman said well my mother has autism but she is perfectly ok. Then she doesn’t need the medication I said but if you have a child who self injures, bangs his head or smashes the house up surely something that helps him to have emotions regulated (no not psychotropic drugs) or help his condition then why wouldn’t you? I don’t believe in drugging kids and Ritalin has been overkill with ADHD or so so called. This is different it is to help a brain system that does not regulate the child in the fragile X case.
We want to help our children and adult children in whatever way we can as parents - and parents are broken by the lack of support like that mother who cried on my shoulder because of the strain of trying to do everything and feeling alone in helping our child whose needs are so many or so deep. No, our children are not broken they are human beings, but parents are broken through the lack of support in this society and a government who has made it about business. The day will come when politicians might end up in the same system should they get a disability or age and need to be in care they should look after the vulnerable properly. Sign my petition for Cameras in disabilities care and classrooms change.org/disabilitycameras
All the best
Anndrea X