Ruth’s Story – This is why we need a well funded social care system
My son James was diagnosed, aged 4, with Aspergers syndrome, developmental co-ordination disorder, sleep problems and attachment disorder.
We were told when he was 14 that, in future, supported living in an ASD environment would be required and that through James’s childhood and young adulthood the family should work towards preparing him for this. Part of the process would be getting him a place at a residential school, with round-the-clock support.
James was a happy, quirky and enthusiastic boy and had some great experiences at primary school. But his experience of secondary school – in particular the last two years, which have involved school changes – have been horrendous. There have been constant cuts and changes and the support he’s needed has never been there. All the chances we’ve had to guide him towards a successful and more independent life have been lost. It takes an extensive time to get him ready for even a small change in routine. His teenage years have been ruined.
James has been bullied, he’s had a breakdown, he’s had crises and been diagnosed with depression – and he’s spent eight weeks in a mental health unit. Now he’s so unhappy that he’s refusing to go to school. The promise of four nights at a residential school never materialised and now even our precious two nights are threatened. I’ve had to give up work as an occupational therapist and my own health has deteriorated.
We have help from a support worker but it’s only a very few hours a week. The support worker, who is wonderful, works extra hours for no pay.
James’s psychiatrist told me my son is the most complex case he has worked with in 15 years, yet he hasn’t had the right support, ever. He’s deteriorated into a very explosive, difficult person. My health has deteriorated in tandem due to stress, fibromyalgia, migraine and depression.
I’ve come very close to breaking point. I can’t look after my son full time. Social care are aware of all this. James is taller and wider than us. He wants to destroy the world. He hasn’t crossed the line where he’s hit us but he’s aggressive verbally. He destroys you mentally and is very threatening. He talks in a ‘horror story’ way – he says how he will kill you in great detail. He swears at social workers.
For us all to have any quality of life James needs support around the clock. I can’t go out anywhere without him phoning me. I can’t leave him at home. He’s a very anxious and scared boy. He has interests and he wants to see the world, but I can’t support him. He has the ability to succeed and he’s not given the support to do that. Here, he’ll be depressed and very isolated. His behaviour will be increasingly difficult to manage. He may even cross the violence line. We can’t de-escalate him. We can only give in.
If he could get support to go outside and live his life, he’d thrive on it and go back to being the happy child we used to know.
We’re waiting for assessments to be completed before we can apply for funding for supported living. I don’t know what the future holds.
(Names changed to protect identities).
If you have been affected by any of the issues here please contact Autism Together’s Children and Families Service on 0151 666 9960.