World Duchenne Awareness Day 2020 (part 3)

Duchenne and the Brain

Hello, I hope that you have found my last couple of awareness blogs informative and thank you to everyone that has read and the posts. Thank you also to everyone who has updated their profile pictures on social media to the red balloon. As you may now know today, Monday September 7, is World Duchenne Awareness Day. On this day awareness is raised for Duchenne and Becker Muscular Dystrophy around the globe.

Every year, a special theme is chosen and this year that will be Duchenne and the Brain. Personally I’m really pleased that this is the chosen theme, I feel it’s a topic that is often overlooked and as the parent of a child with Duchenne, it can often be the most challenging. For many families in day to day life and I speak from personal experience, this often causes more stress and worry than the physical problems. In a nutshell, the dystrophin protein that is missing from the muscle is also missing in the brain. When dystrophin is missing in the muscle it causes muscle breakdown and when the dystrophin is missing in the brain this potentially leads to learning difficulties or behavioural issues such as ADD, ADHD, OCD and autism.

As I’ve explained in past blogs although Alfie is 6 years old, his learning capabilities are currently that of a child in Reception class (Age 4). Socially he’s probably way ahead of some of his peers in fact he’s like a little old man at times and has us in hysterics with some of the comments he comes out with! This probably has seen his learning abilities to be overlooked. He returned to school as a Year 2 pupil and finally with his EHC Plan in place. This will see him finally receive a substantial amount hours of 1:1 teaching but like many things since his diagnosis it’s not been without a fight. We originally started this process when Alfie was transitioning from Nursery to Reception class so what in theory should have been a 20 week application turned into a two year process.

Each case in children or young people with Duchenne is different, Alfie has shown delays or differences in the following:

  • He was delayed with his speech. If we were to give Alfie a long line of instructions he would only be able to process a small amount of the information. One instruction at a time is suffice.
  • He struggles with learning to reading and his working memory
  • Struggles to keep his emotions in control (mainly within the home environment)
  • Finds it difficult to concentrate for long periods of time
  • Routine is very important

Alfie makes sound substitutions in his speech and has difficulty repeating words accurately, and then finds learning to “sound out” words problematic. We have an Amazon Echo at home, but instead of ‘Asking Alexa’ he says ‘Balexa’. In general, the children with DMD show reading difficulties similar to those shown in children with dyslexia or reading disabilities, and often cannot tell some sounds apart from others.

Don’t get me wrong though it’s not all doom and gloom! Alfie is very sharp and quick witted (he gets that from his Dad!). We can drive through a location and he’ll instantly recall a memory from that spot in the blink of an eye!

To summarise Alfie has missed out on two years of 1:1 teaching and that could possibly make a massive difference to the direction of his future education. This school year is more important than ever in regards to his learning as he has missed 4 months of school due to shielding and hopefully with 1:1 teaching he’ll make lots of progress. I personally feel the Government, local councils and schools need to work together to make sure that the EHC plans are made readily available when required. The evidence is there with the diagnosis and no amount of ‘evidence’ should be required.

So that’s it for my #WDAD2020 blogs, I hope you’ve found them to be informative and in understandable terms. I often get lost in all the clinical terms and just want someone to translate it all! It’s also not always easy writing about things like this as it hits home about what you’ve experienced and also what you’ll experience in the future. I have days were I see Alfie as just being Alfie but I have other days when I realise he has a disability. If we go on holiday or visit a place where no one knows us I often see people do ‘that look’ or tilt their head to one side as if to say “What a shame”. We’ve all done it, nobody wants to see anyone in a wheelchair or for them to have a disability. All I can advise in the future is not to see the wheelchair first but to see the person that’s in it. That person can still make a difference in this world and has every right to the opportunities that you or I have. Hopefully these blogs will reach people that have never even heard of Duchenne before today.

Please, please help to raise much needed awareness by sharing this blog and displaying the red balloon on your profile.

Thank you,

Kieron x

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