We often talk about "invisible disability", when someone's impairments are not visible just by looking. It affects those with higher-functioning autism conditions and other neurological issues as well as people with physical disabilities that are not immediately apparent. In all these cases, it is often the attitudes of others that can cause as many problems as the conditions themselves.
One such issue is Acquired Brain Injury, where an accident or illness has left a permanent cerebral impairment, long after any visible effects may have healed. In fact so prevalent is ABI that 1 in 30 children with have been affected to some extent, by the age of 17.
One charity that supports young people with ABI is The Child Brain Injury Trust. In an attempt to educate parents and practitioners about the effects of an acquired brain injury, they have put together a series of webinars that can be accessed for free. Some are available as recordings already, while others have yet to take place and we'll list those dates at the end. They provide an opportunity to learn more about the condition and support strategies for the children and young people they look after.
Mark Hooley of Child Brain Injury Trust has written an exclusive post for us about ABI and its effects.
The brain is amazing- it controls who we are, what we think, feel and do. This is why it’s so important to consider the brain when looking at the behaviour of children, and in helping children and young people with any difficulties they may be experiencing. Many people do not realise that 1 in 30 children and young people in the UK will acquire a brain injury by the age of 17. As the injury happens after birth we call it an ‘acquired brain injury' or an ABI. There are many causes of an ABI including an accident, illnesses such as meningitis, strokes and brain tumours. It can also occur as a result of surgery to address another issue or during non-surgical interventions (such as radiotherapy and chemotherapy).
Did you know that our brains keep developing until our early 20’s? This may mean that problems caused by a child’s or young person’s acquired brain injury can often appear months or even years after the injury occurred. However, when an accident or illness happened long ago, it can be perceived by clinicians and parents as having little impact on today’s behaviour. This means that teachers or parents may not make the connection between the behaviour and the brain injury. Indeed, as these problems can develop so long after, they may not be aware there is a brain injury. Most children and young people will have no physical signs of their disability, this is why acquired brain injury is often referred to as ‘a hidden disability’.
Many symptoms of an acquired brain injury are similar to those of children with attention deficit hyperactivity disorder (ADHD) or those on the autistic spectrum, and this can sometimes lead to misdiagnosis. This in turn brings about problems, as the support that a child or young person with an ABI needs in school is very different to children with other special needs. An acquired brain injury can lead to a complex set of difficulties that are often hard to diagnose or identify. ABI will affect everyone differently. However, there are 8 general areas of difficulty that children will often experience, these are:
Attention and Concentration: Similar to those with ADHD, children and young people with an ABI often have difficulty concentrating for long periods of time and they can find it difficult to initiate tasks.
Memory: children and young people with an ABI often have problems with memory, in particular working memory.
Tiredness/ Fatigue: the brain is responsible for everything we do, and if it is damaged, then even the simplest task can be a battle for the child, using up enormous amounts of energy. This results in the child tiring more. This chronic tiredness suffered by the child may mean a slow decline in performance as the day, week or term goes on, which can be misinterpreted as a lack of engagement and motivation or a disinterest in lessons.
Executive Skills: problems planning and organising– for many children with an ABI this can manifest most often after the transition to Secondary school. During their time in Primary School they are in a very organised and structured environment, which is ideal for a child with an ABI. Often these children will get a glowing report from their previous school and not show any signs of difficulties. However, in Secondary school, students are required to plan what books they need, know where they have to be, and prepare and organise themselves to get tasks such as homework done on time. A young person with an ABI could find this very difficult and may present as being disorganised, badly behaved or lacking in motivation.
Behaviour: children with an ABI often get frustrated and can exhibit challenging behaviour, they may not realise the consequences of their actions. Each of these 8 diffulties has an impact on behaviour, both at school and at home. Many children can cope during the school day, but become challenging at home when the effects of fatigue become most apparent.
Communication: the child may have difficulties in processing different types of communication, and may, therefore, not write down homework correctly, or misinterpret what is required. The brain can take so much longer to take in, process, think about and respond to information following an ABI, so the child might appear to be slow and not motivated when compared to his/her peers.
Social Skills: difficulties with social skills, such as being unable to make and keep friends, not understanding jokes and not understanding the unwritten rules of social interactions. Often children miss a lot of school whilst receiving treatment, they may be held back a year and this can make school life very difficult as they feel left behind.
Perception: visual difficulties can occur as a result of an ABI, and may even go undetected for some time, especially if the child acquired the brain injury during early childhood. The child may be misdiagnosed as having dyslexia or dyspraxia
Earlier this year, some of the children we have supported painted pictures to help show what it was like to live with these difficulties on a daily basis. You can view all their pictures here
What can you do if you think your child or a child you know has an acquired brain injury and needs support? The Child Brain Injury Trust is a charity that helps provide emotional and practical support for children and young people affected by childhood acquired brain injury and their families. We also run education and training workshops for teachers, SENCOs, parents, and anyone who could be involved in the care of a child or young person affected by childhood acquired brain injury. Please visit our website for more information www.childbraininjurytrust.org.uk
The Child Brain Injury Trust have just launched a new learning service to further help and support families and professionals through better knowledge and understanding of childhood ABI. This learning service is a webinar programme and will allow parents and professionals, including teachers, social workers etc. the opportunity to learn more about childhood acquired brain injury and support strategies for the children and young people they look after. I’ve included more information about the programme below.
Our new webinar programme
It’s not always convenient for families and professionals to attend physical learning events, so we have launched a system that brings the learning to you- through your computer, tablet or smartphone. Our ‘webinars’- online interactive presentations have been designed to give you more information and support for the children you support. Taking part couldn’t be simpler; you can do it from the comfort of your own home or from a desk at work. Your face won’t be on the screen and other participants will not know you are there unless you want them to know – you don’t have to say anything, all you need to do (if you want) is listen and learn more about ABI.
We have a range of topic planned and all webinars will be available to listen to as recorded webinars for three months after the live transmission:
Understanding Childhood acquired Brain Injury (recorded)
Making a legal claim (recorded)
Recorded: Helmets – importance of protecting children’s heads
Recorded: Teenage Social Skills
Recorded: Acquired Brain Injury and Youth Offending
Recorded: Lost in Transition – understanding the various transitions through childhood to adulthood
13/01/2015 Benefits – Scotland
15/01/2015 Benefits- England/ Wales
28/01/2015 Adolescence, Puberty and ABI
03/02/2015 Strategies for Support in School
17/02/2015 Self Care and Stress Management for parents
10/03/215 Impact on the Family
You will have to register to take part in the webinars or to listen to a recorded webinar. There is no cost to access the webinars for parents of children with an ABI or public sector workers. All you have to do is click on the link below, register on the system and then register for each of the webinars you want to take part in.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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