Acquired brain injury affects the whole family, Joanne shares her experiences.
My son Joe has an acquired brain injury. He had pneumococcal meningitis when he was 9 months old, he’s now 14. We were not aware that Joe’s difficulties were due to an acquired brain injury until he was 12 years old. Growing up Joe struggled with managing his behaviour, emotions, impulsivity and memory. Due to these difficulties, those around him unfairly labelled Joe a naughty child.
Joe has 3 younger sisters; Leah who is 13, Eve who is 8 and Grace who is 6. He also has 2 step-brothers, Dion, 16, and Kobi, 10. There are just 10 months between Joe and Leah who, up until Joe moved to a specialist school 3 months ago, was in the same school year. Whilst in mainstream school Joe was subjected to many punishments and exclusions and was often the ‘talk of the school’. Leah would do her best to help Joe to be organised, to be in the right place at the right time, keep out of trouble and calm him down and often got into trouble herself for this ‘interfering’.
At home Joe sometimes takes his frustration out on his sisters and brothers, often saying insensitive things or losing his patience with his younger sisters. It can be hard to get them to understand that Joe can’t really help a lot of the things he says or does because of his brain injury. Since I have understood Joe better I have stopped ‘punishing’ him for things he has little control over and this can be hard for his siblings to understand. They sometimes argue that Joe gets away with things that they don’t, having different expectations of behaviour for one child in a house with a lot of children is quite challenging!
I also think my other children have hard time explaining about Joe’s acquired brain injury to their friends as he has no outward signs of a disability.
It was very helpful when Sarah, the local Family Support Worker, from the Child Brain Injury Trust came to our home and did a sibling session explaining Joe’s brain injury to all the children. They found it very useful and it has helped them all to understand Joe better. Sarah also gave me a recipe to make ‘Jelly Brains’ which I did with my younger children to show them how delicate the brain is and how easily damaged it can be.
We have watched DVD’s about acquired brain injury together as a family and found that they were helpful aiding the children’s understanding. Sarah also gave us a comic-style book explaining acquired brain injury which Kobi absolutely loved reading and greatly helped him to understand Joe better; which is great as they share a bedroom!
Joanne’s experience of brain injury is not unique. Please help us create a book to help explain brain injury to siblings by donating £5 this Christmas here.