Angela's Story
Lauras Story, what can I say, it took my breath away. Everything is so similar for my 15 year old son.
Mainstream primary was great, the school was just down the street by p5 he 'walked' to and from school (in his wheelchair). with friends.Played out in the street, his friends from school lived in our street which is all bungalows and he was light enough to be lifted into their homes to play.
High school,1st year wasnt too bad he did make some new friends (he was the only one from his primary to go there as it was accessible). His one to one assistant was a disaster though. She even sat beside him in class even though he has no learning difficulties, and sat beside him during lunch!
Yes he had a one to one assistant at primary but she was never needed in class, just 'watched over him' in the playground and helped with toileting, a sensible woman who understood the importance of free time to be with his peers.
The friendships he developed in first year we tried so hard to keep it going,he was invited to their homes, but as they lived in houses he had no access to toilet and he usually has to go every 2-3 hrs MAX. This also stopped him going fishing with them. They came to our house once but I think were bored out of their minds even with playstation.
By the end of second year it had fizzled out. No texts,emails and just like laura he got fed up phoning to be told they were out, never phoning back.
By third year due to spending most of the year in hospital even the teachers barely knew him, and he needed more help with personal care much to his embarrassment. In 4th year he was excluded from school for a week as they said he was not fit for school, his assistant decided she shouldnt be expected to help with trousers etc during toileting and he had to go to the toilet far too much.
He has a statement and a personal fulltime assistant and a letter from his doc saying he was fit for school! It took a meeting with the school medical officer to remind the school they were breaking the law to refuse him.
But the damage was done to his self esteem and confidence. He's in his final year now sitting 8 gcse of which he has little hope of getting good grades in due to absence from school.
He's looking forward to tech and applying for his driving licence at 16, but his health is getting worse and his disability more severe I dont know that he'll even get a driving licence never mind where we will get the money for EXTENSIVE adaptions to his car.
All I feel is hopelessness now, that horrible constant dread in the pit of your stomach that you got when your child was first diagnosed.
When he was born he wasnt expected to survive so for the first years we were full of joy just to have him alive.
As time went by we hoped for more and chased the dream of walking which he achieved for a while with crutches, the thrill of seeing him playing football with his crutches hurts so much now when I remember it.
Now we are back to our earlier state just wanting him to be pain free and alive.
But I dont think that will be enough for him, he has dreams of his own now.
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