Teresa and her husband care for their son Robin, who has a rare health disorder and learning disabilities. Teresa found it difficult to find information and advice to help Robin, so she has set up an organisation with other parents to help them get the support they need.
Teresa Brett lives in Swindon with her husband and one of her two sons, Robin. Robin has health problems and an undiagnosed learning disability. Their other son David, who is severely dyslexic and receiving Disability Living Allowance himself, also spends a lot of time at home as he helps to care for Robin.
Robin is 14 and attends a special school 16 miles away in Wantage, the closest they could find. He enjoys trips out with his family at the weekend, especially riding on buses, and he goes to an after school club every weekday.
“He loves the club with the other children. He loves making people laugh and if any of the other children are a bit shy, he encourages them. He’s a born leader,” says Teresa.
Teresa has always found it a struggle to get information and advice to help her and her family care for Robin. It took a long time to find out about the financial support they were entitled to, and in many cases they have come across information by word of mouth, or by chance. For example they only learned about Disability Living Allowance from Swindon Portage, a specialist pre-school teaching service.
“On one occasion, while I was at the Sadler Unit in Swindon, a paediatric medical assessment unit, I found a copy of a newsletter produced by CLIMB (Children Living with Inherited Metabolic Diseases) lying about, with my son’s condition listed on the back. I didn’t know there was a support group, and he was well over two by then. I could have really done with that support group from the word go,” says Teresa.
When Teresa found out about the local Learning Disabilities Community Nurse, it made a big difference. He has trained Teresa in giving Robin vital injections in an emergency, and helps with Robin’s other health issues. He provides support on managing Robin’s learning disability and points Teresa and her family to additional support and information.
“We see him every month, or every other month. If I want to know something and can’t find out myself I often ask him,” says Teresa. “He covers a whole spectrum of things. They’re a great source of information.”
Teresa felt that although there were organisations to support people with recognised disorders, there was nothing for people like Robin whose learning disability is undiagnosed. So together with other local parents, they set up Swindon Children Without a Diagnosis (SCWAD), and share information and help support other parents who are in similar situations.
“We’ve got all kinds of people in SCWAD and some of those parents have got learning problems themselves. We’re there to support everybody at whatever level they need it really. We can all do a little bit to help each other,” says Teresa.
Teresa is aware that they will soon need to start planning for Robin’s future after he leaves school. She has started attending meetings of the local parent advisory group, which provides information about the process of transition from children’s services to adult services.
She also has annual review meetings, which involve professionals from a range of different services, including social care, education, and health, to help plan for his needs. Teresa knows that planning for the future will be one of the big challenges for the next few years.
“We don’t know what is going to happen when he leaves school, but he needs structure, he needs a social life. We can’t make uninformed decisions, it’s just getting the information. That’s what we’re trying to do.”