Child's name: Joe
Support Coordinator's name: Lucy
Joe is a 12-year-old boy who has a diagnosis of Rasmussen Encephalitis which is a rare, progressive, chronic encephalitis (inflammation of the brain) affecting one side of the brain. Joe had a right sided hemispherectomy on the 30th November 2018 which aimed to improve his epilepsy and dystonia. As a result, he is now seizure free and his dystonia has resolved. However, because of the surgery he was diagnosed with an acquired brain injury (ABI).
In January 2019 I met the family at the John Radcliffe Hospital, Oxford and provided emotional and practical support in the hospital. Financial support was offered in the hospital via completing grants to assist Joe’s mother with hospital expenses i.e. food, travel, clothing etc. A referral for a welfare and benefits check was also made to ensure that she was receiving all the correct financial support. Signposting to our resources and information was provided for advice and information regarding childhood acquired brain injury. As well as being added to the private, closed Facebook Parent Support Group that is ran by the Child Brain Injury Trust.
Following discharge, a meeting was arranged at the school by the hospital team. This provided an opportunity for all professionals involved to attend to provide advice and support to the family and school. Following this meeting, the following support was provided to the family:
- Sleep advice and support via our resources and signposting to other organisations
- Sibling Awareness Session for Joe’s youngest sister to educate her about Joe’s ABI, potential long-term effects and signpost her to other organisations who support siblings. As well as talking through emotions and how to manage them effectively
- Attendance at Family Day Event which involved interactive sessions for families, children and siblings to understand the impact of an acquired brain injury. As well as a social lunch and a self-care session for parents.
- Family Awareness Session for the father and grandparents to help them understand the impact of Joe’s injury
- School ABI Awareness Session to provide information, advice and strategies to support Joe in school
- Attendance at Education, Health & Care Plan (EHCP) annual meeting to provide advice on childhood acquired brain injury
- Sign-posting the family to parent support groups in their local area
- Peer Awareness Session delivered to speak to Joe’s friends about his brain injury to help them understand the impact on his learning and development
The family are now a year post surgery and continue to engage and receive support from the charity. Recently, Joe’s sister provided some feedback about how she feels growing up with a brother who has an acquired brain injury, as well some advice for other siblings:
“ It’s hard and can be stressful growing up with a sibling with an ABI but you always have to think about the good side of things and keep a positive mindset. Be grateful for your family and keep in mind there’s other people going though worse. Everything happens for a reason and be hopeful and everything will be okay.
Counselling has helped me to let out feelings and emotions you wouldn’t talk about with parents and to know that’s it’s okay to feel sad or angry or stressed even though it’s not you with the disability, as it affects the entire family.
Talking with friends helped me as well to know that they are there for me and that I can talk to them about anything.
The Child Brain Injury Trust has helped me to know that there are other people my age going though similar situations and that share similar feelings and thoughts that I go through. I thought I was just not alone and that I can communicate and relate to others but also give other people advice if they are not sure on what to do. They have also taught me more about the brain than I was unaware of before and to explain the changes in my brother that weren’t there before to know that it’s normal and could get better”
It’s important to note that the charity provide support for the entire family who are affected by ABI. This story has a slight focus on siblings as this is an important element of the support we provide. If you are affected by childhood acquired brain injury and you are a sibling, the Child Brain Injury Trust can provide support for you. In addition, you may wish to explore the following information and resources:
- Strategies for Siblings Factsheet: https://childbraininjurytrust.org.uk/wp-content/uploads/2019/05/Information-and-support-for-brothers-and-sisters-v-2.0-Final.pdf
- Shapeshifters booklet: https://childbraininjurytrust.org.uk/wp-content/uploads/2019/05/1832_CBIT_My_Brother_leaflet_8p_A5_Final.pdf
Sibling based books:
- Rearrange (under 10s): https://childbraininjurytrust.org.uk/product/rearrange-you-brain-book/
- Audio based version of Rearrange: https://childbraininjurytrust.adobeconnect.com/pzrgl7dmk7sy/?proto=true
- Zero to Hero (teenagers): https://childbraininjurytrust.org.uk/product/zero-to-hero/
E-learning sessions to help those supporting siblings understand the impact, as well as providing strategies. These may also be suitable for older siblings to listen to:
Grants for siblings:
If you would like a copy of one of the sibling books or support for a sibling, please get in touch with your regional ABI Coordinator who will process this for you. For details on your local Coordinator, please refer to the following link: https://childbraininjurytrust.org.uk/brain-injury-service/