Learning Disability Today
Supporting professionals working in learning disability and autism services

New home, new life

AndreaIn this guest blog, Andrea tells the story of how support and help from a service provider and a move to a new specialist housing development have changed her son’s life.

Right from a baby, Keith* easily became aggressive, biting and kicking whenever he didn’t get his way. While 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 granda 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 my 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.

Even with support from local social services, we all struggled, and not long before last Christmas, I had to hide from him in my bedroom while care workers were in the house.

It was clear we needed more help. He was sectioned and assessed in the local hospital, and diagnosed with pathological demand avoidance syndrome.

Keith was calmer in the hospital, but without the interests and stimulation he’d had at home, he was going backwards in other ways. I made sure he was home for Christmas, and that’s when the MyLife service first came into the picture.

For the first nine months, they worked with Keith at home, with more hours and a different approach to previous care.

Two carers, with specific training in Keith’s condition, were able to spend more time with him. Over the following few months, their understanding of Keith helped build a trusting relationship, and he’s begun college and expanded his interests to include gardening and cycling. He’s a very different young man from the aimless Keith I saw in hospital at Christmas time.

The care he’s now receiving may not look so different to social services at first glance, but it’s carefully thought through to build on Keith’s enthusiasms, and work with the grain to reduce his aggression and help him get the most of life.

Staff notice the signs that he’s about to become angry or frustrated, and steer his attention in another direction. Having two carers with him all the time means that when he’s angry at one, the other can take over, which calms him down. That’s something I could never do – there’s only one of me.

When a place became available at one of the new MyLife residential bungalows in Hartlepool, Keith was first in the queue, and now he’s got his own place. Moving in in September.

I see him as often as I can – more days than not. But no 19-year-old wants their mum hanging around too much, and he’s got more than enough to keep him occupied.

MyLife staff have really got to know him, his life is more settled and constructive than I’ve known and it’s improved my relationship with him as well – I’m not the ‘bad guy’ making him do things any more.

I think he’d be happy to stay there forever, and now I’ve seen the changes that this kind of care can bring, I’m glad he’s moved out.

From the second I walked into MyLife I knew it would be right place for Keith – and more importantly so did he. From the start, he called it ‘home’.

*Keith’s name has been changed for reasons of confidentiality.

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