A Guest post by Paul Larsen
(Written by my wife Christina)
Life with John and autism is such a roller coaster of emotions and can make you cry sad tears and happy tears almost at the same time.
Yesterday I saw a boy who used to be in Johns nursery class, walking along wearing his greenwood academy uniform and it reminded me of all the things that John is missing out on at this stage of his life. It made me sad because I wish I could give John all the experiences in life that a 12 year old should have…. Having friends… Going to birthday parties… Fancying girls… Telling him that he has to work hard at school, so he can do well in exams, to give him the best start in life. Him not having this life makes me cry sad tears.
Then we have a day like today, where we hear John speaking so beautifully on the radio and we celebrate the fact that he is even able to do this, as he was non-verbal until he was about 6. I then think about him doing the solo piece at the prize giving service at his school and remember how much I was bursting with pride at watching my special boy perform in front of all those people. I think of him i-messaging me from his iPad, to tell me that he wanted Pizza Hut, instead of a McDonald’s on a Friday all these small accomplishments are massive to both John and us his family and that makes me cry happy tears .
Although I wish I could give John the life that any parent would want for their child. I am thankful and blessed that I was chosen to be Johns mum, because who knew that he is teaching me more about life than I could have ever taught him?
I love you with every beat of my heart Son. Mumxxx
I hope you liked my wife’s little story about our wonderful boy, it’s just a minuscule insight into the stresses and strains of being a parent or carer of a disabled child. John has classic autism and will need 24 hour care for the rest of his life.
There are many many people with similar and more heart wrenching stories to tell in this country of ours and that’s without the added stresses of Tory austerity which seems to have brought with it a vilification and negative agenda against the disabled the poor and the sick.
Coping with disability or caring for someone with a disability brings with it many battles, some of these you win and some you lose we still need to be hopeful and try and stay positive. Nowadays that’s not so easy to do, I really can’t put into words the worry or gut wrenching fear I have for my sons future as services already under extreme pressure will have to endure further cuts.
The cuts to social services mean that care which would normally be provided might not be or it could be drastically reduced and could take years to be adequate enough for the people who need them.
We haven’t used any services up till now but will in the future as we get older and John becomes/craves more independence.
What if we aren’t there to fight my sons battles then who will? In a small way he’s lucky we still have our health and at the moment can care for his needs, organise his life or fight his corner but what about the people who don’t have what he has? What happens to them in the big wide world of Tory austerity? The answer isn’t a happy one.