the social isolation of Parents of disability children
I looked at the cockatoos screaming out to each other while I was at the park recently. One screams and another screams and they all follow each other to another tree to eat…people say they are like teenagers and hang in groups. They know each others’ screams and are tight knit in their network groups. They are never solitary always in twos or groups of five to twenty. They want to play and eat and fly. If a cockatoo is left alone in a cage it can go mad. It has been noted by doctors that a cockatoo will develop psychological problems if it is left in a cage and not able to do the things it was raised and purposed to do such as fly and play and feed. It will then start pulling its own feathers out and start screaming in the cage constantly, wounding itself and biting and attacking others, or becoming apathetic, or repeating its behaviors. How sad, they need to be free and with others.
Similarly we humans, need each other to be able to cope with all that we go through in life especially as parents. The worst thing is to be isolated which is not only physically not seeing another person but also social isolation.
Parents face the social isolation of having a disability child and others not understanding what they are going through. Parents will not speak up for fear of social misinterpretation, shame and misunderstanding when they struggle to cope with their child. Because there is no quick fix like the Disney movies, when Clara walks again in the Heidi story from her wheel chair. Its easy in the stories and the public thinks that’s how it always is.
For parents of a disability child it can be a road of neverending care with a neverending story of stress and multiple mountains to overcome. Parents need time out and supports to get through. Whether they get those supports or not is difficult if the NDIS makes it harder for them by demanding they prove everything that is wrong with their child. As if it is a crime to need help for your child with a disability.
The hearts of the NDIS are cold and indifferent many times. Its like something out of a Dickens novel - the poor orphans wanting some more food and the guy in charge of the orphanage says "boy what do you want" "more sir" says the boy (I think hes Oliver twist maybe) "can I have some more" of this crap food since Im starving! He holds up the empty bowl and the orphanage owner says incredulously as if it is a very high demand as if how dare you ask for more !"More you want more?!!" he almost shouts. The little orphan is flinching be he needs some food. The owner is well off and rich and he doesnt care that the poor little orphans want more to eat. Sound familiar? Next minute rich orphanage owner in the street trying to sell the kid off singing "boy for sale! Boy for Sale!" Sounds like the Federal government, Scott Morrison (with a smile) cutting the funds, and the NDIS trying to cut off the vulnerable from their supports and acting as if we the parents are bad for asking for more support!
Parents must stand up for themselves and fight against the NDIS and providers and the government, and stop them getting away ignoring the needs and exploiting the funds of our disability children and our adults. We must wake up and not take . bad treatment by the NDIS or their little providers.
As a parent you are the employer of your provider you give them your NDIS funding you fought so hard to prove and get for your child. Therefore you are the boss of the providers you pay to look after your child. The providers switch it around and try to make you feel small and insignificant and that you have to toe the line and do what they say. The reality is you are the boss you need to take up that power of that truth and wield it now!.
Parents have anxiety for the future of their son or daughter and what will happen to them when they are not here.
We need to help each other as parents none of us can do it on our own we must reach out. Parents should not be isolated from each other. Humans need each other and are social in order to survive we need to be able to talk to others who are going through the same things or suffer the same injustices and problems, if we do not talk then it will not change.
Only a few days ago, I went to sign in at a supermarket and as I was standing there I turned around and James was gone, he was just here. I started panicking , the two supermarket attendants standing there said whats wrong? Did you see my son I said? Hes gone I cant find him I looked around where is he, did you see where he went? Oh they said how old is he we will look for him, he’s 27 years old I said, they did a double take expecting me to say hes three, hes five…ohh they said He cant speak I said ohhh they realized and started looking for James I dashed off to the toilets nearby disability ones just in case…and there he was inside for Gods sake I said to him tell me where you are going! A picture a something, he just looked happily at me like what's the problem? -we washed his hands and came out. At least the ladies wanted to help they just didn’t know how to but were willing and a lot of people will care if they knew…we need to create public awareness of the suffering of children in disabilities and violence that may be occurring in care when we know it has happend, and what parents are going through in their stressful lives...if people dont know how can they step up?
Way back when James was three years old, we had just moved to Australia and my son was only just diagnosed...I was vulnerable myself...my kids were at school that day and my husband at work. I was buying James some lunch and turned around and he wasn’t there…he had jumped out of his stroller and run off somewhere. I searched the whole shopping centre two to three times it was getting 10mins, longer and longer 20mins I started to panic. The young woman at Wendys ice creams came over have you lost someone she said? I started crying I cant find my son I said…what if someone took him? I will help you she said and walked around the whole shopping centre again and asked the centre office to announce over the loudspeaker....
as we approached the supermarket again a lady came toward me smiling with James in her arms - we found him in the biscuit isle she said and he kept running away from us and giggling …thank you so much I said so relieved and emotionally exhausted. Yet everyone has kids, every mother knows what you go through over your children as you worry for them you are tied to them with a deep bond ….yet I have found even some mothers of disability kids shut off and wont reach out to others and are indifferent. We cannot afford to be like that any longer we must work together through the perils and changes in this world. Like the cockatoos we are better doing things with others.
Two years later I went into the same shopping centre and the ice cream lady came up to me and said were you the lady crying because you lost your son ? she said Yes I said I remember you she said even after all this time it stayed with her. We need other humans in our lives and we need to keep connecting with each other like the cockatoos need the strength of numbers and each other - we must not let isolation win or we will go mad ourselves without each other. Together we are more resilient and able to create change in the world for our vulnerable disability children and face the future with strength..
My son was hurt at a respite house and then a day program within two years. The day program he came home from recently with the bruises were unrepentant and haughty and denied all knowledge of what happened they took his funds but gave no protection- so much for duty of care they gave none. They didn't like me sending the photos of my sons bruises to the accounts section for their records. Just for the record it was NADO that my son came home with bruises from - they really did not care.
We need cameras in disabilities places of care so that our children will protected from harm and we can have peace of mind as their parents and we can have justice if anything should happen to our children or adult children or siblings we must not let providers walk away scott free with no consequences should they harm our dear ones. No way they need to be exposed, caught and pay for what they do. We must champion the rights of our children to have freedom from violence and a decent life and respect in society.
All the best
Anndrea x
sign my petition change.org/disabilitycameras
#ifjamescouldtalkactiongroup
#disabilitylivesmatteroz