Five things parents must know about acquired brain injuries

Bob Butler, HCML’s Children’s Service, supports children with brain damage and their families. He shares what parents should know about brain injuries

For children who have sustained a brain injury, early multidisciplinary rehabilitation is vital to achieve successful outcomes along the recovery journey and has a huge impact on the long-term functional outcomes of the patient. 

The impact of a brain injury is often life-changing for the child, and their family and friends around them. Parents are suddenly faced with huge decisions about their child’s future, whilst managing their own emotions and ongoing family life. 

Bob Butler, HCML’s Children’s Service Clinical Lead, shares five things about brain injuries that parents should know and be prepared for:

 

With brain damage, what you see is not what you get

Children are continually growing and developing. Key developmental milestones occur at the ages of 5 and 12 years old. High level executive functioning is less evident before the early adolescent milestone, so there may be parts of the brain that have been damaged that might not even have developed yet. Until the child reaches that age/milestone of development, it’s very difficult to say how the injury will impact on the resulting function and whether this works and develops properly.

Because of this, long-term support, monitoring, and intervention is required as the impacts of the brain injury come to light and change the recovery journey throughout adolescence. It’s often said that the majority of recovery from brain injury happens within the first two years, but in reality, rehabilitative improvements are seen throughout childhood into adolescence and beyond.

 

A support network for parents of children with brain damage is vital

Children need the support of their parents, wider family, and friends throughout their rehabilitation.

ABI is lifelong and many changes and adjustments will be needed along the way, so a support network needs to be in place to help manage and get the best outcomes for the child. It’s an extremely stressful, upsetting, and emotional time for all involved, particularly for parents and carers who will need to be making life-changing decisions. Having a strong support network is therefore just as important for the family to enable them to provide the support and care their child needs. 

A parent knows their child best. They are integral in helping multidisciplinary teams to understand what the child was like before the accident and build a picture of what they liked, what they were good at and what they achieved, so that any rehabilitation programme ensures they work towards the best possible outcomes. 

As much as it’s vital for the parents to provide that insight and make decisions about the healthcare of their child, it’s important they take expert advice from professionals including case managers who help them navigate the rehabilitation process. Case managers understand it’s an incredibly difficult time and that parents/carers may be frustrated by delays in process or seemingly small improvements in their child’s recovery. They may want to try different approaches, but it’s important that the recommendations based on clinical expertise and experience are followed so that the rehabilitation programme achieves the best results for the child. 

 

Parents must take care of themselves too

In many cases, parents will experience Post Traumatic Stress Disorder (PTSD) or other psychological trauma because of the child sustaining an ABI. It may result from a combination of being present at the accident, the trauma of seeing their child in this way or the stress and anxiety of what the future holds. 

Case managers are there to support the family as well as the child and will often coordinate psychological support, amongst other interventions for the whole family. 

Making sure parents get the support they need is fundamental to the child’s rehabilitation progress. Evidence highlights that a strong support network aids a child’s recovery so it’s integral the parents/carers are in a strong position to do so.

 

Plasticity and brain damage

It’s often cited that brain plasticity (the brain actively attempting to create new neural pathways and strengthen existing ones) results in better outcomes in children, so it was originally thought that the earlier the brain injury in childhood, the better the chance of recovery. 

However, I know from my experience of supporting young children over the years that isn’t the case. The developing brain that receives an injury may never develop or work properly. But that won’t become apparent until the requisite milestones have been reached. 

 

School support for children with brain damage

When a child is in school, parents should be aware that the way in which primary/junior schools and secondary schools report on performance is very different. Where a child may be doing very well in primary/junior school, they may not find secondary school as easy. This is because primary/junior is a very nurturing environment. Children are encouraged and supported and have freedom to play and express themselves with the teachers managing and organising their needs. 

Secondary school is very different, and the change of responsibility for the child to manage and organise themselves is quite dramatic for any child. The change for a child with an ABI is significant. Depending on the severity of their ABI they may need a specific Educational, Health and Care Plan (EHCP), to ensure the school is aware of all their specific needs and has adequate provision allocated to meet these needs. Key challenges may become evident in their executive function, highlighting subtle and significant cognitive differences, that if not understood in the EHCP, can lead to misinterpretation of performance and lead to labels such as disruptive, lazy, or challenging. 

Parents and teachers need to be prepared for this significant transition in education and understand that cognitive changes may be subtle and hard to spot for those supporting them, so the EHCP will make a huge impact on the child. 

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