The traditional marriage vows are also applicable to parenting.
When you have children you have them to love and to cherish, in sickness and in health.
That doesn’t mean that it’s easy when a child is ill or has a disability, but it does help explain why most parents sacrifice so much for and give so much to their children both because of and in spite of their problems.
When we were told our son had a degenerative brain disorder, that he was unlikely to live long and if he did he’d be profoundly disabled, I didn’t know which would be worse.
He died soon after but two years later his brother was born with the same condition and lived until just after his fifth birthday which gave me the answer – both disability and death are worse than the happy, healthy children we all hope for. But you can’t give your child back nor do you stop loving him because his brain doesn’t work properly.
Caring for a child with multi handicaps isn’t easy, but when Dan was alive I often wondered if it was less difficult with someone like him who was totally dependent than it might be with a child whose disabilities weren’t quite as severe but still left them well behind “normal” development.
Dan could do nothing for himself, didn’t appear to see or hear and his only communication was crying so there was no feedback or affection from him but at least he couldn’t hurt himself or other people or misbehave.
Parents of children with severe autism have the challenge of dealing with people who are physically able but socially and often intellectually disabled and as Macdoctor explains in response to the story of the 18 year old autistic girl who was jailed there is a large hole in the system which means people with these sorts of conditions and their families don’t get the support they need.
I fully support the theory of deinstitutionalisation of people with intellectual disabilities and mental illnesses but the practice has been flawed because of a lack of training for care givers, lack of support for the people and their families and as always, a lack of funding.
But there are a couple of glimmers of hope, Innovative Learning of Dunedin is:
. . . joining forces with two international partners in a $3 million deal to help fight the spreading “epidemic” of autism.
Innovative Learning, headed by chief executive and psychologist Dr Mike Reid, of Dunedin, will launch two new certificate programmes later this year.
The certificates are the result of a partnership between his company and Antioch University Santa Barbara, a private institution based in the United States, and will also be distributed in the United Kingdom by Ludlow Street Healthcare.
The programmes aimed to improve the care given to those diagnosed with a range of autism spectrum disorders (ASD) by upskilling those who came into contact with them – from teachers and carers to GPs and other health professionals, Dr Reid said.
And yesterday, John Key told Breakfast he would look into the matter.
Now isn’t the time to be expanding budgets but ensuring people with mental illnesses and intellectuall disabilities have the care and support they need must be a priority.