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Include Duchenne Project

What are the Learning and Behaviour risks in Duchenne?

1. Speech and language problems – boys with Duchenne often experience speech delay and may find it difficult to understand complex instructions.

2. Specific Learning Difficulties like dyslexia. Many researchers have shown that young people with Duchenne have difficulties with reading, writing, spelling and maths. 

3. Behaviour issues.  It used to be believed that these were just caused by frustration with the condition. However, it is now established  that young people with Duchenne are at risk of Attention Deficit and Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD).  This means that a child could often do things without thinking about the consequences, or find it hard to focus on tasks.  It could also mean that he worries a lot about things. Children with Duchenne are also at higher risk than the general population of communication problems such as Autism.  

What is the Include Duchenne Project? 

Find out about Include Duchenne from watching our film.

The Include Duchenne Project was set up by Action Duchenne in 2008 with funding from Children in Need and the Big Lottery Fund.  It was originally run as a research project with the Centre for Child Research University of Swansea. The project gives children with Duchenne a full learning assessment by a specialist dyslexia teacher.  Each teacher will spend a day at school with the child, assessing him/her on all aspects of learning such as IQ, working memory, vocabulary, reading, arithmetic and so on.  Although this sounds daunting, most of the assessments are fun and interactive so children do not tend to find it stressful.

The specialist teacher will write a full report with recommendations which will be discussed with parents and school at a feedback meeting.  

If the child has literacy difficulties we will probably recommend that he follows the Decipha Programme which is a 36 week online literacy programme and is delivered in partnership between parents at home and a learning support assistant at  school.  Children become time agents and travel through time and space to different historical periods for example Ancient Egypt, the Blitz, the time of the dinosaurs, but at the same time follow a very structured phonics programme learning their sounds and how to blend them together.  Through a password system, families and schools will be able to log-on to the child’s secure personal area. Here you will find training videos, information, a communication wall for contacting the Learning Expert and the chance to get in touch with other families and schools taking part in the project.

Since research shows us that children with Duchenne have relative strengths in knowledge and facts, and relative weaknesses holding information in their heads and doing something with it, the Decipha Programme offers them something that focuses on their strengths (facts, knowledge, vocabulary) but helps develop their weaknesses (phonics, reading, spelling). 

Families, schools and Local Authorities can buy places on the Include Duchenne Project see www.decipha.org for details.  Action Duchenne is currently funding a small number of places each year.  Please contact Janet at janet@decipha.org or 07920 297916 for more information or to be placed on a waiting list.