Chris is 22 and has Cerebral Palsy ÔI was very lucky to have been able to attend a primary school in Inverness that had a unit attached to it. My mum took on the education board and after a year of pushing I got to go.
Chris is 22 and has Cerebral Palsy
‘I was very lucky to have been able to attend a primary school in Inverness that had a unit attached to it. My mum took on the education board and after a year of pushing I got to go. I had a great time, lots of swimming, horse riding, learning too and mixed socially with the whole school. I followed on to Inverness Royal Academy that also had a new learning support unit. Again I was fortunate to swim every week, had opportunities to try all sorts of disability sports such as skiing and curling. I got to attend main stream classes and the atmosphere was great there too, I made lots of friends.
I feel I am lucky with my package since leaving school, I attend a place called Cheshire house in Inverness, I socialise here with people of all age ranges and we go out socially and have a great arts craft session. I also attend college which hasn’t been going so well, it’s only one day a week and last week my support worker didn’t show so I couldn’t stay, their excuse was I had been missed off the rota. Also you do not get a choice of subject and this year I was given Gardening which I do not like so I have chosen not to go back.
I also attend one day a week somewhere called The Meeting Place, here I have developed my IT skills, with support from them made my own web site and have been involved in some road shows they have been doing.
My mum drives me to all these places as transport has been cut altogether. She drives me the 25 miles there and waits in town to take me home again. This is her respite time. I did go to respite every 4 weeks but there was nothing for me to do and I was really bored. Once when my mum called I said ‘when are you coming to rescue me’
Disabled children repeatedly identify their parents, particularly their mother’s as very important to them and usually their main source of support.
A critical review and analysis of current research and policy relating to disabled children and young people in Scotland.
Professor Kirsten Stalker and Dr Lio Moscardini
I am a member of Haggeye, The Children’s Highland Forum and Spirit Aid.
I had a good transition but I felt disappointed by the health side of things. All my life I have had Physio but from the day I left school I have had none. My mum wrote a letter to my consultant asking for a stand that costs £4,000 that would help me with my own physio and support me through my exercises. We were given the stand so this replaces my physio but if my mum had not contacted the consultant asking for this then I would have been left with nothing. The wheelchair service is for children’s services only and I don’t get a review for that anymore. In its place my mum has been given a bag of tools so that if my wheelchair is broken she can have a go at fixing it. If a wheel comes off or if I need a new chair then we have to contact the Wheelchair Service. We also received a letter asking for some equipment back if we were not using it. My mum and I thought that this was really cold and felt that the OT could have called instead of writing to us. When I need an anaesthetic for something that is planned my mum always asks if it is appropriate that other things are done when I am asleep, i.e. when I got grommets put in my ears my mum asked if my teeth could be looked at also. At Rigmore my mum would sleep in the Playroom on the floor with the other parents but then they built the annexe accommodation and that was great but when I moved into adult services mum wasn’t allowed to stay with me and we had to have the curtain around the bed the whole time she was with me. Mum slept in another building, mum was told this was let out for £20 a night to the children of the doctors and did get noisy with them partying through the night.
My life would no doubt tell a different story if my mum didn’t do all the things she does for me.
She has to be able to come and change me as I get no support for toileting although I do have a support worker, no lifting and handling is allowed to be done with one carer’.
My mum puts herself to the bottom of the list and once when she needed to go into hospital herself as a day patient she was only given 5 days’ notice. She told them that this was not long enough to organise care for me. When they sent her another appointment again it was only 5 days’ notice so she called them again to tell them this. They said ‘exactly how much notice do you need’? ‘Well the doctors will now not be back at the hospital for 9 weeks’, my mum said ‘great, I should be able to organise something in that time’.