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Surfers and Fighters | Own the Equinox, Day 14

September 7, 2015

by Bettina Kastrup Pedersen

Bettina Kastrup Pedersen works as an Educational Consultant at the Center for Deafblindness and Hearing Loss In Aalborg, Denmark. She has held several workshops at different conferences in Europe about her work with children with Usher syndrome. Bettina has also been part of a small booklet called "Children with Usher Syndrome; Inclusion in the Mainstream Schools” that can be found on the National Board of Services website.

Photo of Bettina

My name is Bettina my job is to provide advice and services to families and professionals around children at the age of 0 to 18 with Usher syndrome. Primarily children With Usher 1, but occasionally also with type 2.

I have been familiar with this group of children for almost 20 years, and if I have to describe these children in a few words it world be: fighters, surfers and brave.

Every day, these children have to fight for the acceptance of their special needs because of their dual sensory loss. Because every one's situation can differ from another's, it can be very difficult for others to understand. My experience is that it makes them strong, but at the same time also very vulnerable. Needless to say, it is a life long project to be a person with Usher syndrome.

Surfers, because they have to be able to adjust themselves every time they change "arenas": at school, in social relations and even, sometimes within their own families.

Brave, because they keep on fighting even though life can be cruel and not as smooth as for their peers.

Even though this might sound like a generalisation, every child with Usher syndrome, of course, is as unique as the rest of the population and has to be treated as such.

In my work, the most important thing is to be humble and able to listen and guide both children and parents and help them to feel included as much as possible.

Furthermore, I have to bring awareness and knowledge into the ”arenas” where the children are in their daily lives. My colleagues and I do this by direct guidance to the professionals in the different networks around the children, but also by facilitating courses, creating articles an other ways of elucidation.

We collaborate with consultants who give guidance and advice to adults with Usher syndrome in order to have a life long perspective in focus. We also collaborate with the National Board of Public Services in order to create more awareness in society.

And most of all we have a very close contact to FDDB, The Danish Federation for Deafblind People. Especially the parent federation.

The best moments for me are when we, from time to time, gather the children with Usher syndrome for a few days where they can exchange experiences, create real friendships and be challenged together with friends who also have Usher syndrome.

The last time we gathered the children was for two days where they were in a forest and had to move from platform to platform up in the air with different heights between 4-10 metres off the ground.

They all remember an experience like this for a long time and all of them express that they felt safe and relaxed during these gatherings.

I am not able to run a marathon, but I promise to walk 10 km on the 19 of September 2015 in honor of Usher Syndrome Awareness Day.

And the latest thing I have done in order to raise awareness of Usher syndrome has been to become a member of the Usher Network Commitee of Deafblind International. The committee has a strong goal to spread further knowledge through their website.

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.

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