School Support – Alex’s Blog
Hear from Partnerships and Outreach Manager Alex Berbank about the support Action Duchenne can offer in schools.
Spring is afoot and with the longer days the warmer weather comes the eventual promise of the long school holidays. I think for many families it’s a double edged sword. Time with our children is so valued and certainly appreciated much more in the Duchenne community, and then there’s the other side when we realise we actually have to find and plan something for them to do. Before you know it it’s late August and were left wondering why teachers need such a long summer break after all!
It highlights just how long the boys spend at school. A quick google tells me it’s 1,265 hours a year, and I’m winning no analysis awards to say that’s a lot of time, especially when it seems that school holidays always seem just around the corner.
This means that creating the right school environment for children in school is so important for the wellbeing of the whole family. This school year, the Support and Science team at Action Duchenne set about the task of proactively approaching schools to find out what support they need, where they felt the gaps in support and knowledge were and where they felt we could be of most use. We also started asking the community too how best to approach the topic of better experiences in education. This is still very much an open topic to discuss and we would love to hear your thoughts and ideas.
Since our inception we’ve supported over 700 schools and counting and that’s no small feat. It means that schools that are struggling almost always have a case study or peer that they can turn to who has had the same problems they have. No one gets Duchenne straight away and no one solves the first problem it throws at us. We have all learned about Duchenne from someone more experienced, someone who had been there before, someone who’s found a solution, or been there for us until they’ve found one. Schools should be no different. Most importantly, we can all agree that the experts in your children at school are you as parents and carers, and you should always feel empowered by that.
This Autumn we went into a school in Yorkshire and ran an assembly and workshops to help share the idea of disability and diversity to the children there. We set the task of someone coming to the front of the assembly and holding out my laptop that I needed for work out at arms length for the duration of our talk, an impossible task and yet a huddle of hands rose to the challenge. For those of you that have never had the joy of holding something at arm’s length, try it now. It’s not long before your arms shake and you’re struggling to hold back the sweat. We asked the children if they could think of ways to help support their friend holding the all important laptop out in front of them. The most common response was to ‘tell them to stop, to put it down’. When we explain, sometimes we can’t stop feeling tired or put down the laptop, some of the kids realised they could help by coming to the front and holding it up together. The message is that when we come together to help each other things become easier for everyone involved. Then a suggestion from the back came: “I can’t help him hold it up but I can make him think he’s on a beach”. Taken aback by the suggestion that squawking like a seagull would help the situation. I asked him for his rationale and to come prove it for me. Within the absurdity was pure reasoning: “If I can make it easier for him to feel less pressure and more relaxed maybe he can do it for longer”.
And there we were floored by the idea that a 10 year old squawking away in a 10/10 seagull impression had just shown understanding and knowledge of emotional support is sometimes all we can offer but I promise you that laptop has never been lighter! Everyone in the hall had a chance to stand back and giggle and breathe. The tension in the room was lifted. Just then we were all doing our bit to help the problem.
So to all of you, I wish that you have someone there that’s able to squawk like a seagull when you’re struggling. And for everyone, there’s the reminder we all need that children often have exactly the perspective we are all searching for.
If you are interested in Action Duchenne supporting your school either current or future, please fill out a form of intent here.
If you are unsure but interested please get in touch through your normal channels or at info@actionduchenne.org
Support services we provide are:
Work with schools to find out what support is needed
- Work with schools to find out what support is needed
- Assemblies
- Classroom Workshops
- EHCP (or equivalent) Support
- Staff Training
- Resources for Accessible PE Sessions
- Consultation on Accessibility
- A Network of Other Schools
Our Current Events
You can find links to our online support groups , and to register for our newly launched webinar series.
Become an Action Duchenne Member
We need YOUR support so that we can continue to support those living with Duchenne muscular dystrophy. Find out how YOU could support us by becoming a valued member, making a donation or fundraising for us here.
