Deficit or no deficit, deafblind children need government help

Deafblind children and their families need the help of expert intervenors to help them overcome their isolation, writes Rebecca Frony, who will be supporting deafblind children and intervenors in parliament with the charity Sense on November 12th. Their message for the government is, deficit or no deficit, that deafblind children desperately need help from trained, one-to-one intervenors. This is from the Guardian…

Giving birth is an overwhelming experience. You feel joyous, exhausted, thrilled, desperate, excited and terrified all at once. One thing you cling on to in those early days is the reassurance from other parents that all babies do this or that, that it’s nothing unusual, that it’s just a phase. I can’t imagine how much more extreme all those emotions must be if you don’t get that reassurance; if instead you’re gradually facing the reality that your child isn’t the same as every other child and this isn’t going to change. How would you cope, for example, giving birth to a child who is both deaf and blind? That’s what I kept asking myself on a recent visit to the extraordinary Anne Wall Centre in north London.

Deafblindness is a combination of both sight and hearing difficulties. No two deafblind children are the same, and because of their complex conditions, many also have physical or learning disabilities. The Anne Wall Centre is there to support deafblind people and their families. It is an extraordinary place, every conceivable space crammed with art rooms, cooking areas, trampolines – you name it. One room is a kind of sensory chill-out zone, with crazy light shows and soundscapes to heighten the experience of whatever limited sight or hearing you may have. I could have stayed in there all day – in fact, I suggested they should hire it out for parties, but apparently that’s not quite the point.

During my visit, I was lucky enough to meet some of these wonderfully unique children and their parents, as well as the highly skilled professionals who support them. It’s an awful cliche to say it was inspiring, but … it just was. Utterly. The parents I met described the centre as a lifeline: their visits to it were not just highlights in their week, but indispensable ones.

I witnessed first-hand how these children can learn and achieve with the right support. A person who works one-to-one with a deafblind child is called an “intervenor”. This is a highly trained professional who enables a deafblind child to connect with the world around them and learn tactile communication. With intervenor support, a deafblind child can learn, play and develop as much independence as possible while growing up. This support is vital for deafblind children to overcome the isolation caused by deafblindness, offering opportunities to develop in our hearing and sighted world and learn language. Watching a deafblind child learn by touch as they feel the intervenor’s hands is like watching a beautiful ballet. It is remarkable…

More at:  Deficit or no deficit, deafblind children need government help

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