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Janet Hoskin: The Duchenne muscular dystrophy is a physical muscle wasting condition which
affects mainly boys, boys become weaker and weaker as their muscles become weaker and
by the time they are about 11 or 12 they usually lose the ability to walk. As well as being
a physical condition though, Duchenne has a related learning and behaviour problems
that have often gone unnoticed and unrecognized and so this project has tried to address those
issues.
Being a parent of a child with a physical disability is very difficult and you do worry
about your child being isolated socially but when they also have problems with reading
and learning you feel that they are going to be doubly isolated and so something really
has to be done about it. Children with Duchenne have risks of Dyslexia
and ADHD but we also knew that nothing was being done about it and often in schools parents
reported that schools were addressing physical needs making sure there were rumps and disabled
toilets but actually the learning and behaving needs just weren’t being addressed and parents
across the country were really struggling with this as we were… and so what’s been
so fantastic about the lottery money is that we’ve been able to set up this project that
really addresses this learning and behaviour needs.
Two main aspects to include Duchenne there is the full learning assessment that the child
receives at school which looks at all sorts of aspects of his learning and there is the
online program called decipher which basically the child becomes a time agent and travels
through time and space to different historical periods, but at the same time as they are
going to those different historical periods they are doing a very structured synthetic
phonics program.
Heather Steadman: How that sound?
Saul Caitlin: Cow
Heather Steadman: What’s the sound first?
Saul Caitlin: Ow
Heather Steadman: Good boy say it again
Saul Caitlin: Ow
Heather Steadman: The great advantage of decipher, it’s made such a great improvement on Saul’s
everyday learning so it’s not just because now he can read and he is so much more of
a confident reader that means with History, Geography, Science, Math I really feel he
has made such a great improvement
Saul Caitlin: I don’t decipher because of this [IB] because you get to play fun games
and it’s helped my reading and how I say words
Celine Barry: The Include Duchenne project is about including children in everyday activities
art, craft, drama without National Lottery funding we wouldn’t have been able to look
at the specific needs of boys with Duchenne in the first instance we wouldn’t have been
able to send specialist teachers all over the country and we wouldn’t have been able
to give parents the information that they now have about the learning needs of boys
and what is available and what will work.
Hey did that bed just had us.
Celine Barry: Their feedback has been incredibly positive you know we have families telling
us that I never believed my son would read probably the school didn’t think the child
could read and now he can. And you know a boy who’s on the autistic spectrum in special
school now is a brilliant reader and it wouldn’t have been considered possible and yet it completely
is possible. We’ve had parents say it’s been so delightful to have conversations with
school about learning not about behaviour and although our behavioural issues associated
with the condition but the focus of this project has been on learning let’s get them learning
and it’s been wonderful.