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  • Writer's pictureSamson's Mum

Advocating at school, superb swimming and brilliant breathing!

I just received a call from the Head at Samson's school.

He had his first piano lesson today.

Things like this seem so insignificant to 'normal' parents, but to us it's huge. Samson loves music, loves having a go, is a beautiful singer and has a natural flair for a tune. Usually it's year 3 and 4 and above who have music lessons at school, but I asked especially for lessons for Samson and they were granted for him.

Happy is an understatement.

The piano teacher recognised that the traditional piano keys are a bit of a challenge for his little fingers, so will be teaching him on a keyboard.

Following an interesting and hugely valuable Respiratory Physiotherapy appointment this week, I also emailed the school to keep them informed of how important 'deep breaths' are for Samson's lung function. So, as quick as a flash, the school are starting him on recorder lessons (flute's a bit heavy at the moment) asap!

Samson has also been attending the Upside Down Swimming Club (an amazing charity) for the past 3 years. He's been learning to swim and do you know what, he can do it. He was swimming unaided through my legs in the pool on our 8am Saturday morning family session this weekend. I mentioned to his swimming teacher about the breathing in and she said they could focus on deep breaths, blowing toys around in the pool during his lessons.

It just shows, the power of relationships with school, clubs, keeping people in the loop, keeping positive and advocating for opportunities for our little guy.

This week, with the help of our fantastic OT, we had a meeting to discuss our housing and it was confirmed our home is not 'future-proof' and doesn't have the space to be adapted in a way that will enable Samson to have a fulfilled life. This is something that I knew would be coming, but it's such an enormous thing to think about it's almost too much.

Luckily, there are schemes like the 'shared ownership scheme' which I did not even realise existed which will hopefully enable us to part-own a bigger house with a larger ground floor footprint. These are things I never thought I'd ever need to know about, and we certainly hadn't planned to ever move from our lovely little home, but here I am, researching the heck out of housing schemes, housing associations, moving from an owned house to a council property etc.

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It's the realities of living with Duchenne. I'm just so glad to be able to do it all for Samson and our family.

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