I'm Paula, a mum who has been trying to piece mine and my family’s life together after losing my only son Thomas in a residential care unit on 4 February 2015.
Thomas was just 20 years old and the light of our lives. I'm writing this for his father, Paul, and his three sisters, Becky, Charlotte and Katie, along with his nephews and nieces.
My son Thomas was the light of our lives. When he was born I was frightened about how I would be able to cope with him. There wasn't a lot of help and advice given then. He was the youngest of my children and the longed for boy after having three daughters.
We all learned very quickly to love the beautiful little boy he was. His Down's syndrome never got in the way of his sunny and mischievous personality. He had a love of life, with ketchup and gangster music at the top of his list of favourite things.
We all have lovely memories of him and he was well loved in our local community A community is the people and places in an area. . Family times were precious with him. I realise now, looking back, how very precious they all were. It's those memories that give me any strength that I have today to struggle on without him.
Thomas started to change in his teens. I suppose that is very normal for any child, but a diagnosis of autism Autism is a disability. Autistic people find it difficult to understand what other people think and feel. They also find it difficult to tell people what they think and feel. Everyone with autism is different. as well as his learning disability A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things. seemed to be the core of the problem. I was finding it hard to get him ready for school or persuade him to engage with things as he had done previously. I was struggling by now on my own. I asked for help from the Local Authority A local authority is also called a council A council is also called a local authority. They are a group of people who make decisions about some of the things in the area where you live. These include: schools, social care Social care means the services that give care and support to people who need it. (support for people), parks and dustbin collection. . They are a group of people who make decisions about some of the things in the area where you live like schools, social care (support for people), parks and dustbin collection. .
It is my belief now that it was the worst thing I ever did and it led to a downward spiral of institutionalised care that took my son away from his loving family and me. He died in a place where he did not want to be, after 4 years of inappropriate placements during which time he suffered proven abusive treatment, seclusion, restraint and a programme of anti-psychotic drugs that changed constantly.
Thomas died of pneumonia. He was a fit young man and I do not know the full story of what happened in the last five days of his life. I had been expressing my worries very loudly and clearly about his compounding chest problems right up to when he died.
I have little information about how he died. Imagine being a mother of a boy, taken far away against the will of his parents, listening to him sobbing on the phone to come home, listening to people saying he couldn't have the supported living Supported living is when you live in your own home with support from staff. People who live in supported living have a tenancy agreement. he had been promised, telling me I couldn’t speak out about what was going on and not knowing the circumstances surrounding his death.
We are still waiting for an inquest which may give us some of the answers we are looking for but Thomas was failed in so many ways in his short life and I will continue to speak out to make sure what happened to Thomas does not happen to anyone else.
I need answers for my son and to stop this happening to all the other people with learning disabilities taken away for treatment and left in hospitals and inappropriate placements all around the country. All people with a learning disability and autism must get the quality support they deserve close to their families.
We begged for help for my son and were met with a cold and heartless system that just wanted to put him somewhere "out of sight and out of mind". They tried to ignore and forget him while he was alive. He will not be ignored in death. He was my son, he had a loving family and we are going to get justice for Thomas.
We are still waiting for an inquest which may give us some of the answers we are looking for but Thomas was failed in so many ways in his short life and I will continue to speak out to make sure what happened to Thomas does not happen to anyone else.
Find out more about the I Am Thomas Campaign and help bring about justice for Thomas.