New ‘Dad’s Group’ at Rainbows offers support to fathers
When his son, Angus, was diagnosed with Duchenne Muscular Dystrophy (DMD), Nick Brown, from Grantham in Lincolnshire, found it difficult to find the support he needed. However, since attending the Dads’ Group at Rainbows, Nick has discovered that there are people who understand exactly what he’s going through.
“When we first found out about Angus’s condition, we were absolutely devastated,” Nick recalls. “In that one moment, everything changed. Our outlook on life changed. We were on a different journey. He was only six years old at the time. He’d had the symptoms from when he was much younger but we were told he was just lazy. I felt so bad about the times I’d told him off because we thought he was just being lazy. It never occurred to me that he actually physically wasn’t able to do the things we were asking him to do.”
“I didn’t take the news very well when he was diagnosed. I literally locked myself away. I’d tried talking to friends and family, but no matter how close they are to you or how much they want to help, after a few minutes, you see that their eyes glaze over because they just can’t understand what it’s like to actually be in that situation.”
Now aged twelve, Angus’s condition means his muscle tissue will continue to weaken and waste away, making it more and more difficult for him to use his body. He is currently in a wheel chair, unable to stand, walk or use his arm. DMD affects 1 in 3,600 male infants and is usually found when there is a history of similar conditions in the family.
“Every day is difficult, especially at night time,” Nick said. “His medication and steroids cause him to have night sweats. He can’t use his body to turn over or even scratch an itch, so he gets very frustrated and uncomfortable. We usually end up getting up about three or four times each night to tend to him.
“But apart from his physical difficulties, intellectually, he’s just like any other boy. Always on his Xbox playing FIFA, he goes to school, he has a great group of friends. Although he might not be as quick to pick up certain things like maths of English, he’s top of his year group in Science and his long term IQ puts him in the top two percent.”
Nick attends the newly formed ‘Dad’s Group’, in which parents, all of whom are in a similar situation and have children being cared for by Rainbows, can meet and chat.
“I’d tried all the professional counselling and support groups I was being offered, but it didn’t take me long to realise they just weren’t for me,” Nick said. “So, when we got the email from Rainbows about the Dads’ Group, I was very reluctant. But, because of the fantastic care my son was receiving there, my wife encouraged me to give it a try.”
“I was really surprised at how good it was for me. For the first time I was with a group of dads who were in the same situation as me. I didn’t have to justify or explain myself or the way I was feeling and it was great to be able to share that with other dads who were on the same journey.
“The group is very relaxed and informal. Those who want to share can, but you don’t have to, no one is forced to say anything. There’s about eight or ten other dads who regularly attend and they all find it really useful too.”