My son J is 11 years old and has a rare syndrome called CHARGE. He is profoundly deaf and has complex vision impairment as well as other difficulties. Being able to hear and see things clearly is something many of us take for granted and we don?t realize how much we learn from the world around us. For J it?s very different. 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.
A big issue for J 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 J. I am sure that many of you have come across the same difficulties. 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, J has been able to have a Deafblind Guidance Assessment (organized by our local social services, after request by me), 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. J has fun, has the chance to become more independent and, as an extra bonus, this gives us some special time with his brother.
March is the 10th anniversary of the Deafblind Guidance and I?d like to use this time to urge all parents who have a child or children with hearing and vision problems to go to their local authorities and use the Deafblind Guidance to get what they are legally entitled to. If your child has had a social services assessment, but you?re not sure if it was a Deafblind Guidance Assessment, check with your social worker. Because deafblindness is so low incidence, lots of social work teams are unaware of the Guidance. You may have to ask for the assessment more than once, and your local authority has to use the services of a deafblind specialist to carry out the assessment, not one of their regular social work team members. More information is available at www.sense.org.uk/help_and_advice/social_services/deafblind_guidance/ .Without the Guidance Jamie would not be able to be as active as he is and experience as much of the world. I cannot thank the Guidance enough as it?s really made a difference to him and our family, and highlighted to local professionals that deafblind children have very different needs.