Chicken pox: Judy and Joshua

Joshua Brooks from Suffolk developed a brain injury four years ago following chickenpox when he was 2 years old.

April 2015. Date of brain injury: 2011 (child aged 2 years).
Judy and Joshua
In rare cases like Joshua's the chickenpox virus infects the brain and leads to its tissues becoming inflamed which can result in brain injury. Here Joshua's mum, Judy, shares her family's experience in this Q&A.

What were your thoughts when you were given the news? 

We didn't get a firm diagnosis until the end of 2014 although our own personal research had already made the link. We're still trying to come to terms with the news; grief for the child who was changed forever, worry, fear and determination to get him the support he needs. And frustration at the lack of help. 

In the early days is there anything you wished the doctors had explained that would have helped?

Joshua in hospital
I wish they had been more honest, that there was the potential for permanent injury. We were not told about acquired brain injury or told about any support organisations. We thought he was a miracle for recovering and everything would be OK.

Tell us a little bit about life since the brain injury. 

Everyday is a constant fight for diagnosis. Access to speech therapy in particular is appalling, much of the improvement in Joshua's speech is down to my work and the school. Joshua is in mainstream school. He has sensory processing disorder and I am learning about this now too.  Lack of sleep is a real challenge for us all because Joshua doesn't sleep. It's frustrating when he point blank refuses to do something as mundane as get dressed because he'd prefer not to.  Our other two children feel left out because Joshua needs so much extra time. There's a lack of money for things Joshua needs, things we all need.
Josh and family

What are people's reactions to Joshua's brain injury?

Brain injury is an invisible disability. People don't understand the meltdowns and our family pretend it isn't happening which is isolating for us. Once Joshua came out of hospital people assumed he was well.

What are the remaining effects of the brain injury and can you share some of the strategies you use to help?

Joshua has sensory processing disorder, speech and language problems as well as fine and gross motor skills problems. He also has short term memory problems. 

Josh and computer
We use a visual timetable and a Movin' Sit Cushion which is a special device which supports his posture and spine. I think it's important to try and keep bedtime routine structured then work with whatever happens. With only 25 minutes of speech therapy per fortnight term time, much of the therapy is done by me at home.  Joshua also has no fear or concept of danger.  He dosesn't have much understanding of emotions but he is very affectionate.

What are your expectations and hopes for the future?

Josh
We live day by day with whatever happens. We have given up having expectations but hope for Joshua to reach an age appropriate level and lead a normal life. On his good days I have so much hope that he will be OK and reach a level where he will cope but on his bad days I worry to the point of panic.

If you could give one piece of advice or encouragement to other parents what would it be?

Hope for the best, expect the worst and go out and do it yourself because sadly there is not help where there should be. 

You can follow Joshua's journey on his Facebook page here.

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