Right from the start, MyLife felt like home
In September, MyLife’s centre at Hartlepool welcomed its first resident, a 19-year-old young man we’ve been working with in the community since the beginning of the year. His mum tells the story of how support and help from the centre have changed her son’s life in just a few weeks.
Names have been changed for reasons of confidentiality.
Right from a baby, Keith easily became aggressive, biting and kicking whenever he didn’t get his way.
Most of the time he was as loving a child as anyone could wish for but when he got frustrated, his frustration turned to aggression towards anyone close and I realised that loving him wasn’t enough. As a single mother, I needed support from wherever I could find it.
The doctors identified autistic tendencies, but without a full diagnosis of his condition, I couldn’t get that support, so I went to the library and read up on his condition.
I realised Keith had suffered oxygen deprivation at birth, which caused epileptic fits, which in turn caused West Syndrome.
As he become older this turned into Lennox-Gastaut Syndrome. I took him to hospital and refused to leave until I had a formal diagnosis – I got one, and it confirmed my research. I was finally able to get help from social services.
Carers took Keith out for treats, helped to distract him from his rages, and even though we were basically a close family, the respite helped me and his little brother.
As Keith started school, I trained as a teaching assistant and helped out at the specialist school he attended.
We all supported him as he developed the same kind of enthusiasms as many boys – football, trains, planes, trips to McDonald’s. His room looked like an airport with models of the planes he took to our Benidorm holidays, and he loved to visit rail stations and travel on trains. His nana and grandad could be his best friends - always going to football matches and gardening.
But often, everything was a fight. When I say there are things Keith loves, I mean really loves. The usual ‘time to go home and we’ll come back tomorrow’ tactics don’t work, and his raging would kick off.
Family outings like swimming or going to the park became more about the rigmarole of an exit strategy than enjoying the moment. How would I get him away without an outburst?
The wrong tone of voice or look could trigger a violent physical reaction. Once, Keith attacked me while I was driving and the car left the road. As he became a teenager and grew to over six feet, he was beyond me to control, and though his little brother was brilliant at caring for him in many ways, it shouldn’t fall to a child to be a carer.