We heard about Family Fund two years ago in Great Ormond Street, Joseph had gone in for another operation on his bowel, my husband had just died and Joseph had been out of school for almost 10 weeks. The staff suggested Family Fund could help with a computer to keep him up to date with school work. Since we got the laptop Joseph has learnt to touch type which has helped his written communication massively due to his sight issues.
Joseph is now 16, he has ADHD, Asperger's, Hirschsprung's disease, photophobia through disease of the retina, rheumatoid arthritis, a stoma, hypermobility and global developmental delay. When my husband and I adopted Joseph aged three the only word he could say was “Cat.” I was a cat, my husband was a cat, when he wanted a drink he would pat his mouth and say “Cat.” My husband worked in the music industry and used nursery rhymes and song to teach Joseph to speak.
Sadly my husband passed away recently, so my daughter bought the house next door, initially to help with Joseph’s care. Since then we have knocked through the two houses and the gardens to combine our houses and while it has been great in terms of childcare, Joseph can be quite disruptive.
Joseph doesn’t sleep. He will disturb everyone in the house during the night; he has no concept of time and just thinks as soon as he is awake that it’s time to get up. He is very vocally loud and will turn on the TV, waking up my granddaughters.
I applied this year for a Lay-Z-Spa to help with the muscle problems caused by Joseph’s hypermobility. We have it in the back garden, my older son has built a frame around it and a roof and we have strung lights all the way around. It’s an amazing place for Joseph to relax. But the spa has actually had the greatest benefit during the night; Joseph will go out and turns it on. It’s like a warm bath but with extra bubbles, he totally chills out and it means the rest of the house can get to sleep and sleep better.
On my own I could never have afforded the Lay-Z-Spa for Joseph. Even my granddaughters love it; the youngest calls it 'Joseph’s Cacuzzi'. I know that Joseph feels safe in there and I can leave him in there and come back in half an hour and he will have completely calmed down and ready to go back to bed.