Our loving, cheeky, reclusive, extrovert: defying all logic on a daily basis


Jacob sustained his brain injury from an aneurism when he was a baby. One of the biggest consequences of his injury has been emotional difficulties, leading to self-harming. His mum Emma, from Dorset, says it has been a difficult journey for the entire family but that they have always seen light at the end of the tunnel.  Here the mother-of-five details their journey and the interventions she and her husband have taken to help their son, now nine...   "Jacob was born a happy and healthy baby boy; contented and settled from the start. However at seven weeks he became ill and was having seizures. It was discovered he had an aneurism in his brain which was leaking. Signing the consent forms for the different procedures where it lists death as an outcome was heart breaking. The aneurysm, which they removed, had been so large that the Surgeon had not seen one such a size in a child so small. Jacob was very lucky. If it had burst entirely Jacob would not have lived.

Brain injury, epilepsy and autism

Jacob came home and continued on anti-seizure medication whilst his brain adjusted to the changes. He has been on and the medications for the last nine years With such trauma to his brain it has been difficult to decipher what is the normal 'abnormal behaviour' for Jacob's brain. Despite now having partial brain damage epilepsy, autism, sensory, developmental and behavioural problems, along with some emotional issues, Jacob is alive, for that reason we are blessed. He has had an emotional rollercoaster ride. When he was off seizure medications he had a breakdown and at seven he was suicidal and self-harming He attended school for only two hours a week.

Self-harm

There was a brief period of bullying which made Jacob very self-aware. He began to feel useless. The negativity manifested themselves within his every thought, for everything he did he believed it was not good enough and that as a result he felt he should be punished. It started with him scratching his hands peeling his skin off of his hands, arms, legs and face as a way to deal with his inner pain. At school he was expelled as a health and safety concern. At times of high anxiety, he would attempt to walk into oncoming traffic, screaming out that he deserved to die. Restraining a child whilst attempting to get them to safety was not always an easy task, but the stares from other people often made it feel harder for us as parents.
Jacob tried to chop his hands off and was threatening to kill himself. Everything became a weapon that he could potentially harm himself with.

Initiating a change

It was clear that during this breakdown that we as his parents would have to initiate a change in Jacobs feelings about himself.
Jacob with his dad and sister
He attended a managing feelings group for a period of time run by CAMHS (Children and Adolescent Mental Health Services).  Although he was mostly unresponsive to the help element, as a parent it was a comfort to see Jacob interacting with other children with similar behavioural and emotional needs. To know that even when your child is in such a state emotionally that there is something there, a desire to reach out to others is really encouraging as a parent, because on the darkest days it is the glimmer of hope that is needed. Having hope allowed us to be more effective at helping Jacob cope with his problems. We knew that with the right things in place he could chose not to harm himself.

Distraction techniques

The strategy we often used when he was harming within a secure environment was to use distraction techniques without acknowledging the harming act that he was doing; talking about spending time on the tablet, doing a task that required him to use his hands, all helped him to choose another sensory input or way to express himself. It took about 18 months for the really damaging self-harming behaviours to stop. As a family it was a difficult journey.

Sibling confusion and remorse

Jacob's oppressive and destructive behaviours had caused some confusion with his siblings, and anguish as his parents. 
Jacob with his siblings

There were times we thought it couldn't get worse, and it got so much worse. There were times when we honestly thought it would never get better, but thankfully it did, it got so much better. Over the period of 18 months we have gone almost full circle, Jacob's harming is far less destructive, less harmful and he is easier to calm down. He even shows remorse when he has over reacted to a situation. There is less overall anxiety even though he still struggles to cope with life and understanding the actions of those around him. We have been teaching Jacob it is OK not be able to understand everything and everyone around him, and that when he needs help someone will be there to help him.

Learning to adapt

Now at nine, Jacob is currently attending a mainstream school. With the help of a full time TA, he is learning to adapt more every day, making some friends, joining a football club and some days he even claims to like school. Jacob is one of five children, and is often my little bossy boots, helping me organise the others whilst he remains chaotic. He also enjoys helping his dad who due, to a progressive illness relies upon a wheelchair Jacob is our loving, cheeky, shy, caring, bossy, reclusive, extrovert- defying all logic on a daily basis. There will always be struggles to overcome, with much uncertainty for our complex lad, but we are so grateful that he has a future to look forward to. It could have all ended so differently- but thankfully no one fights on like our Jacob."
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