7 yr old Jai’s Story – how he deals with his epilepsy

Jai was born prematurely at 42 weeks. He seemed fine, all checks were great and he hit all mile stones early – walking by his first birthday!

He was very clingy and seemed different in some way.  He cried when people spoke to him and separation from me was awful for him.  He spoke his own language that bizarrely I understood!  At three and a half he started speech therapy which was successful and he progressed massively.

At 4 he had his first absence/ complex partial seizure then another a few months later.  After his Gramps passed they came thick and fast; he was then medicated at age 5.  He did well at school achieving to a good standard. Then at age 7 when his sibling was 4 we realised something wasn’t actually right, she could now do things he still couldn’t so started the long process of diagnosis.  He remains in mainstream school and struggles every day, he comes home exhausted but still doesn’t sleep much. He is a loving caring child who fights every day.  He has accepted who he is and is extremely proud of his epilepsy; he wears a dog tag and tells people openly about it and how he struggles.

Jai is currently attending a mainstream school but fights very hard and needs a special needs school.  We are awaiting a full diagnosis of ASD and anxiety disorder and most recently mentioned is sensory disorder too.   He, like other children with special needs is very special and an amazing talented child.

Below is a copy of a piece of written by Jai when he was 7years old on how he feels about his epilepsy.  This has been shown to a lot of people who found it helped them to understand Jai more.

How Jai deals with Epilepsy

Jai also has DCD (developmental coordination disorder) and he wrote this about how it affects him:

“My DCD makes me sad I don’t like being different I don’t like noises, I don’t like indoor pe, I don’t like distractions, I don’t like to write it hurts to do it. I feel alone at school people don’t understand my DCD. I wish I didn’t have DCD because Im scared of it, it makes me worried I don’t want to have it anymore I want to be like everyone else. But I have to stay like this and it doesn’t matter it won’t beat me!”

 

By | 2017-01-29T20:25:41+00:00 June 11th, 2013|Categories: Life & Times of a carer|1 Comment