Ruth’s son has absence and tonic-clonic seizures. She explains the challenges her son has faced, how being part of Epilepsy Scotland’s Youth Group has helped her son, and the importance of the Youth Group adventure weekend.
How did you feel when your son was diagnosed with epilepsy?
It was a challenging, confusing, and emotionally draining time, and I was very concerned about what this meant for him and for us as a family and also what could have triggered it.
What challenges has your son faced since being diagnosed with epilepsy?
He has social and learning difficulties because of the seizures. He also feels stressed by the requirement to take medication daily.
How has being part of the Epilepsy Scotland Youth Group helped your son?
He feels a sense of belonging and acceptance. He also enjoys the activities organised by the group.
How important was it for you to have time over the weekend while your son was on the adventure weekend?
It was an opportunity to bond with the younger children and I was glad that my son was getting an opportunity to be with other children experiencing similar issues.
It lessened my usual burden of looking after the needs and concerns of all, most especially my son.
What did you do with your time whilst your son was away with the group?
It was a chance to give my undivided attention to my younger children and do things specific to them as they often feel left out with the main focus being on looking after their brother’s complex needs.
What has been the biggest difference that Epilepsy Scotland’s Youth Group has made to you or your family?
The consistency of the groups and activities gives my son something to look forward to in the week and the fact that I get support with getting him there by way of taxi.
This greatly reduces the feeling of yet another thing to accomplish that is very specific to one member of the family.
The support from staff giving one-to-one visits during a difficult time in the family was very beneficial.
What does Epilepsy Scotland mean to you as a parent?
It means that my son has a place where he is not defined by his disabilities. He is accepted for who he is and not treated as “weird”.
He is around people who have patience and understanding about his limitations as well as an appreciation for his many capabilities.
What would you say to someone thinking about donating to the Crowdfunder for the youth group adventure weekend?
That they would be making a massive difference in the lives of young people by affording them the opportunity to socialise and experience the joys of life despite their differences. They would be giving them a place to belong!
This Christmas, we are launching a CrowdFunder appeal to raise money for an adventure weekend for young people living with epilepsy next year! To donate, please click here.