Action for Brain Injury Week – Blog by David Russell-Douglas

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  • Joshua with his sister Mabel

Joshua was diagnosed with Acute Lymphoblastic Leukaemia (A.L.L) in 2006 (aged 3) and commenced on an intense three and a half year high dose chemotherapy regime to eradicate all traces of cancerous cells. One of these drugs – methotrexate was given into his spine and thus had direct access to his central nervous system.

Intrathecal methotrexate has been one of the main stays in the treatment of A.L.L since the 1970’s.  It is most effective at killing the Leukaemia cells but it is a double-edged sword – it is also neuro-toxic.  It is now estimated that some 40-60% of children are now suffering to some degree or another from neuro-cognitive impairment as a result of the drugs they were given during treatment – unfortunately Joshua is one of them.

Joshua now has an acquired brain injury and although his day-to-day life is a struggle we wouldn’t have it any other way.  He is a survivor and we are forever grateful to the Doctors and those dreadful drugs because they saved our little boy’s life.

After Joshua’s chemotherapy treatment finished the neuropsychologist at the Hospital conducted a series of assessments and diagnosed him with having an acquired brain injury.  She directed us to the Child Brain Injury Trust and they have been an invaluable source of information and support to us all.

We were put in contact with Beth, our support worker. She was able to come into Joshua’s school and deliver a peer awareness session with his classmates. It taught them how his brain injury occurred, what can happen as a result and suggested ways in which they can support him.  She also regularly attends review meetings and has completed staff training in the school in-service day.   She explained that an acquired brain injury is different to other types of learning disability and must be treated as such.

Thanks to the input from Beth at the Child Brain Injury Trust the school has been remarkable in how they approach Joshua’s education.  They have a wide variety of strategies in place to support him in and out of the classroom.  They are aware of Joshua’s difficulties and go out of their way to make the school environment as stress free as possible.

Joshua has access to a laptop, extra time when sitting any formal tests and his needs are also considered when the teacher sets out the groups in class.  His current teacher is also very good at “reading” Joshua. She is able to tell when he is becoming stressed and steps in to help the situation.

We fully understand the struggle that many parents go through to obtain the correct learning environment for their child. We have had many meetings with the school over the years explaining and educating them about acquired brain injury and on many occasions Beth has helped us get our point across and come up with solutions to the problems Joshua faces.  Our advice to other parents would be to get the Child Brain Injury Trust involved as soon as possible. They are an invaluable resource when building your Child’s development plan and in the long run your school will thank you to.

In addition to the help the Child Brain Injury Trust has provided in Joshua’s school environment, they have also helped his little sister understand why her brother behaves the way he does.  His sister now realises that when he shouts and gets frustrated it is not because he doesn’t like her it is because he becomes overwhelmed with the confusing world around him.

From the outside Joshua appears to be like any other child. However, his lack of social contact throughout his Leukaemia treatment and the resulting brain injury has left him struggling to keep up with his peers. Joshua’s brain injury slows his responses and alters his perception of situations, which often leaves him frustrated and alone. Luckily, he has kept a very strong bond with his sister Mabel. She looks out for him and plays with him when she finds him by himself. She now understands his issues and gives him the extra time he needs to answer back.  He is desperate just to be like everybody else but as his little sister often tells him – she loves him just the way he is.

The Child Brain Injury Trust’s family days out have also been amazing for Joshua to get together with other like-minded children and he looks forward to each and every one of them.  He is particularly looking forward to next month when he is going to his very first youth group. The Child Brain Injury Trust is a fantastic Charity and would be lost without them.

If there is one piece of advice for other parents’ in our situation it would be do not give up.  When the teachers tell you everything is fine, when the doctors say, you are being overprotective, believe what your child is telling you.  If they say things don’t feel quite right – Believe them.  Fight to make sure they are given the same opportunities as everybody else. We have never given up on Joshua and we never will.

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