By Carol Thomas
My son Jamie is 11 years old and has a rare syndrome called CHARGE. He is profoundly deaf and has a complex vision impairment as well as other difficulties. Because of this he needs a lot of help to do what most of us think of as simple day to day things, like getting a drink or going down to the shops.
Being able to hear and see things clearly is something many of us take for granted and we don’t realise how much we learn from the world around us. It’s very different for Jamie. Most of the time he needs one to one support which is hard work for us as a family as we have to support him so much of the time – this can also be very hard on his younger brother Adam.
A big issue for Jamie is that he is unable to go to most after school activities as he simply cannot join in; he can’t play team games, he can’t join a drama club; he has grown out of 'messy' play, and the vast majority of groups that organize children’s events can’t offer one to one support, or have training in specialist communication needed to communicate with Jamie. But he is like any other child his age and wants to go out and have fun.
Thanks to campaigning by the national deafblind charity Sense, Jamie has been able to have a Deafblind Guidance assessment (organised by our local social services), which has looked at the support he needs as a young deafblind person to be able to go out and have more of a social life.
He was offered direct payments – money which enables us to employ a personal assistant who can take him out for a walk (which he loves), take him to a park; any outing really that he wants. For example, he goes to a gym club for disabled children once a week. His personal assistant takes him and supports him there. Jamie has fun, has the chance to become more independent and, as an extra bonus, this gives us some special time with Adam.
March is the 10th anniversary of the Deafblind Guidance. I’d like to use this time to urge all parents who have noticed that their child may have hearing and vision problems to go to their local authorities and use the Deafblind Guidance to get what they are legally entitled to.
Without the Guidance Jamie would not be able to be as active as he is an experience as much of the world. I cannot thank the Guidance enough.
