Tom was born with a rare genetic condition which means he is unable to stop eating. As a newborn he was adopted by a couple who describe their experience of caring for a child with complex needs.
Jeff and Lynn had fostered many children as well as bringing up four of their own and adopting two youngsters with Down Syndrome. The couple were told Tom has Prader Willi soon after he was born and although they had some experience caring for children with complex needs, they had no idea how he would develop and how his condition would impact on their family. “He was very floppy as a baby and had no coordination, classic signs of Prader Willi,” said Lynn, “He came into a very busy home life, he coped well until the age of 11 when things started to change.”
As a result of his condition Tom has the constant urge to eat, which is driven by a permanent feeling of hunger which can lead to dangerous weight gain. It also causes restricted growth, poor muscle tone and behavioural problems, such as temper tantrums or stubbornness. Having moved to Cornwall when he was a young boy he attended a special school and a local respite service. His family were having to constantly monitor his movements. His care became so demanding that it was a 24-hour job, as Lynn explains: “Tom picks his skin when he gets anxious and tends to get stressed out about things very easily. As he got older he became more aggressive, throwing his belongings and damaging things, although it was never aimed at us. We used to try and control situations by reading his moods. Certain things would set him off, you could see it in his eyes. He would be full on with visitors, he needed round-the-clock care.”
After supporting Tom through his tumultuous teenage years Jeff and Lynn decided to look into placing him in a care home, where staff were trained to deal with his complex needs: “It was a difficult decision and one that we considered carefully. Our home was no longer suitable for his needs because of the impact his behaviour was having on the rest of the family,” said Jeff, “he was 16 when things really got difficult. It got to a stage where he had to be watched constantly. We had to put locks on the childrens' doors and whenever we went out I would stay by his side because he used to run, we were worried that he would hurt himself.”
Tom was initially placed in a large house with an imposing open staircase, not the most suitable environment for a young man who was prone to leaping off things and running. He then spent time in a private terraced house in Plymouth. Lynn felt both placements were unsuitable, believing they were exacerbating Tom’s aggressive behaviour: “The staff couldn’t cope with Tom. I don’t think they had been properly trained. It was a tiny house with no garden, it was very claustrophobic. He had no social worker at the time because social services in Devon and Cornwall were arguing over who was responsible for him.”
His placement broke down after staff called the police who handcuffed Tom and transferred him to a hospital in Bodmin where he remained for around six weeks. He was then moved to a specialist unit in Cardiff, where he spent two years isolated from his family who could only visit every other month.
The family’s resolve was tested to the limit. Unhappy with his care they fought hard to find a more suitable place and one that was closer to home and would give them peace of mind. “I had to travel to Wales on my own while Jeff looked after the children, it was a nightmare,” recalled Lynn, “because Tom had been sectioned he was in a secure unit living with people who had far worse conditions. It wasn’t the right place for a young man with Prader Willi. Tom responds well in the right setting with the right care and attention. He didn’t like being cuddled but loves to cuddle those that he trusts.”
Trained support workers based at September Lodge in Goonhavern where Tom is based.
Maggie Rowley, family liaison with the Prader Willi Syndrome Association, which Lynn and Jeff turned to when Tom was first diagnosed, said the condition is now being picked up at a much earlier stage, which means health related issues can be addressed more effectively: “There are many treatments that can improve muscle tone and help people’s growth with Prader Willi. Good food management advice can also prevent associated medical problems with weight gain such as diabetes and breathing problems."
Tom is now settled in his new home, run by Green Light, which is a short drive from his parent’s home. They now meet up every fortnight at a local cafe and enjoy catching up together. Lynn is hopeful for Tom’s future, knowing that he is in a safe place where the staff supporting him understand his needs: “He has a good routine. The home is ideal and much better than a flat. If Tom lived on his own I think he would be lonely. He’s got a good social life and is part of the community. He goes for walks, on bike trails, goes to car boots and the cinema. We would like Tom to stay where he is, but it’s up to him now. We know that he is likely to move again, but he will always need support and an environment that is tailored to his specific needs.”
The names in the article have been changed to protect the individual's identities.
For further information please see the Prader Willi Syndrome Association website: http://www.pwsa.co.uk/information-support-advice/about-pws.html
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