Helping them understand their teen's hemiplegia
Although many people will not have heard of it, hemiplegia affects one child in a thousand. Hemiplegia is caused by injury to the brain, usually at or around the time of birth. Depending on which areas of the brain have been affected, children may experience epilepsy, visual impairment, and speech problems. Having hemiplegia can create learning difficulties or behavioural problems too. There is also a lack of control or weakness down one side of their body.
Young people with hemiplegia are often judged as "not disabled enough" to be entitled to specialist services, but find that mainstream services lack the expertise to understand and meet their needs.
Being disabled, and living in a mainstream world can lead to young people feeling isolated. Their parents can feel this way too, especially because they rarely have the opportunity to meet other parents of disabled teenagers who can relate to their experiences.
Moreover, the process of growing up with a condition like hemiplegia can be challenging for both teenager and parent. A child with disabilities growing up and learning how to become more independent has huge impact on family life. For example, it can be extremely difficult for parents to know when to allow young people to do things for themselves. In medical and social care circles, the process of growing up with a long term condition is referred to as "transition."
Roald Dahl's Marvellous Children's Charity is working in partnership on a project with HemiHelp. The project aims to make the process of growing up with hemiplegia easier for both young adult with hemiplegia and their parent.
The project involves two workshops for parents of young people aged between 16 and 25. Around 40 parents are expected to attend each workshop. The workshops will be held in the North East of England.
The workshops for parents will address the emotional and practical impact that their disabled young person becoming more independent has upon them. By working with parents directly, HemiHelp hope that they will become more confident in their son's or daughter's ability and that this will lead to better outcomes for all the family. Families will also be more informed about the support and services available to them.
Learning from this project will be communicated to healthcare professionals, particuarly occupational therapists and physiotherapists who are concerned about the lack of services available for young people with hemiplegia when they leave Children's Services aged 16.
Both HemiHelp and Roald Dahl's Marvellous Children's Charity also believe that learnings from this project could also apply to parents of young people with many other conditions.