Action for Brain Injury Week blogs- Debi

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Blog written by Debi Dougall

Some people can be very judgemental with complete disregard as to why someone behaves the way they do.  As a society we do not try to understand things until they happen to us.

Brain injury is exactly like that. No one understands or wants to understand until it affects them. I was probably guilty of this too, but now try to have a much more open mind, I refuse to judge people. We have to raise awareness before people can understand. Until then, some members of the public will continue to judge on looks and actions alone. This can be heart-breaking to parents if it is their child being judged and consequently labelled as the “bad” or “weird” child. It is an outlook that is very hard to change.

I, unfortunately, know that feeling only too well. Lauchlan was diagnosed with a frontal lobe Archnoid Cyst just 5 months after his 2nd birthday, with ongoing headaches and evidence of raised intracranial pressure. The decision was made to shunt him just after his 3rd birthday. Recovery has never been straightforward for Lauchlan and at the age of 12 he has now endured upwards of 50 brain operations. With so much surgery some degree of “damage” was inevitable.

As Lauchlan began to interact more it became obvious that he had social problems. Was it down to damage to the frontal lobe? This is the part of the brain responsible for our executive functions.

Lauchlan’s problems became more apparent when he started nursery. He was a very impulsive child with a nasty aggressive streak that was uncontrollable. He would lash out at other children and adults. He did not understand that this type of behaviour was unacceptable. Specialists were called in to help him “manage” his behaviour but to no avail. If Lauchlan was having one of his outbursts then the best thing to do was leave him alone in a safe room until he calmed down. His nursery made a box of special things for him to have during those times, inside were photographs and a few items to remind him of happy times. It was the perfect for him. On calming down, he would become inconsolable, so upset that he was hurting people. The bottom line was he just had no way of controlling his actions – he was like a coiled spring!

This behaviour affected the whole family. We couldn’t go out for dinner or to the cinema as there were no warning signs to tell us when Lauchlan would kick off.

We attempted a day out when he was about 5. We went to a theme park and went into the onsite restaurant for lunch. Unfortunately, Lauchlan suddenly changed and ran towards another family. He grabbed their table and flipped it over (with their food on it). So much strength for a little boy.

I was humiliated, but much harder to deal with was the father at the table shouting that we were “raising an animal”. This was my baby who lived his life in pain each day and had already endured more surgery than any one person should have to. An animal?? No!! Just a little boy who through no fault of his own didn’t know how to behave around others but here he was being labelled by someone who had no idea of what he had been through. We left without eating and it was a long time before we attempted another family day out.

By this point, the only time Lauchlan would go out was to attend school or to the park with his dad. He had no friends. He couldn’t go out to play as other children had realised it didn’t take much to push him over the edge. They would target him and once again his lack of understanding of how to behave in social situations would surface and he would lash out. Parents called him “the bad boy” and didn’t want their kids to play with him. They knew he spent a great deal of time in hospital yet they failed to educate their children, it was easier to whisper about Lauchlan giving their kids ammunition to taunt him with calls of “ha ha, you’re brain damaged”.

Socialising was increasingly hard over the years as his outbursts could happen at any time, there was no warning. Normal activities were impossible and it was easier to stay in our own bubble and entertain ourselves.

Lauchlan is now 12 and I am delighted to say things are much easier. He still has that impulsiveness and the aggression still rears its ugly head at times. Yes, I have a few dents in my walls. Yes, I have been on the receiving end of some horrendous behaviour in public places. But the episodes are few and far between and usually coincide with a shunt problem. He is now often able to feel the frustration building in him and he will go to his room until the urge to lash out passes. In many ways, he has a maturity way beyond his years but he is still a bit behind his peers when it comes to social interaction. However, he now has friends and he works on these skills every day.

Those parents that labelled him all those years ago have left him with a tag he doesn’t deserve. He doesn’t have friends at home because of this. But he has school friends who accept him for who he is and he has managed to start building some special friendships.

Parents of children with an acquired brain injury will face many problems; this is only one of them. Every day is a learning curve but with the right love and support they can thrive like any other child.

Organisations like the Child Brain Injury Trust are invaluable to parents and I would highly recommend going along to as many of their events as possible. Not only does it give children the opportunity to be with other kids who understand and are facing the same obstacles, but it gives parents the chance to speak to other parents and get advice on how to handle various behaviours and problems.