By SWAN UK BLOGGER AND PARENT REP FOR NOTTINGHAM, OXFORDSHIRE AND BERKSHIRE
Steven has the mental age of a seven-year-old and the reading age of a six-year-old, in the body of a 13-year-old.
Steven has a list of conditions and health problems which keeps increasing. He has no overall diagnosis.
He has dysfunctional breathing, possible absent seizures, a low immune system, sleep issues, behavioural issues, chronic bacterial bronchitis, possible ADHD, autistic tendencies, developmental verbal dyspraxia (you can’t tell he has any speech problems when talking unless you speak to him for a while), irritable bladder, gastric reflux and migraines. He also used to be tube-fed to stabilise his weight. For the last few years Steven’s health has been stable but over the last 12 months it has started to take a nose-dive. Steven has just been referred to see a cardiologist as he might have a problem with his heart. He’s been having ectopic heartbeats quite frequently and he was rushed to hospital on New Year’s Day.
Despite everything, Steven is cheerful, happy and always has a smile on his face. He also loves to dance.
I’ve been a member of SWAN UK for a few years now. We are a friendly bunch of people. I like the help that I receive from other SWAN UK members – it can be about anything. I’ve been having a tough time recently and the advice and support from other members has been so helpful.
I’ve lost a lot of friends because of Steven as they don’t understand and it can be tough as a single mum with two kids who have health issues. My SWAN UK family have got me through it all … from when Steven has stopped breathing to family illnesses. It’s amazing how everyone can come together and even though our children are different they are going through roughly the same journey.
SWAN UK families understand when the doctors can’t give you answers and are there when you’re awake most of the night with so many thoughts running through your head.
I lost confidence when I had Steven as I had to give up full-time work so my confidence took a nose-dive. I’d always worked in customer services so I’ve been able to bring some of what I’ve learnt to organise and man information stands. I’ve been rebuilding my confidence because I felt I’d given up too much. Before, I was known as ‘boy with the tube’s mum’/’Steven’s mum/’Chloe’s mum’; doing the stands has made me feel like I’d become ‘Helen’ again.
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