Hi, my name is jon1108! Son with Duchenne struggling to keep up with friends

jon1108

Hi, I am a dad to a wonderful son of 8 with Duchenne. He is getting really upset that he can't keep up with his friends at school, which is heartbreaking and I am struggling with how to support him. Thanks

vikki66

Hi @jon1108,

As a parent, I feel heartbroken for you reading about your son’s struggle, that must be hard for you to take.

I don’t know much about Duchenne, only vague general knowledge, if it’s not too intrusive is there anything that you’d like to share with people who have no experience of the condition?

I can only think that there must be a lot of amazing qualities that your son possesses that are not appreciated yet by primary age kids. My son has different difficulties (and is a little bit older) but it used to pain me that so much of popularity at school, including in the playground, centred around competitiveness. It sometimes feels like if your child can’t compete (and I don’t only mean due to disabilities) they’re considered lower in the pecking order, and that can affect kids badly.

What does your son like/love to do?

Rachel_Scope

Hi @jon1108 and welcome to the community.

I'm so sorry your son is struggling. Have you spoken to the school about how they support him to join in with his friends? Is it a mainstream school?

SaraC_Scope

Hi @jon1108

Welcome to the community. It's so hard when we hear about the struggles our children face at school. I was in your son's position many years ago with my disability and I know how upset my Mum and Dad were at the time.

It might be beneficial to have a conversation with school, so they can explore ways for your son to be involved in activities. Does he have a particular passion or game he loves to play? Perhaps a game could be set up for him to play with his friends at his pace.

There are a few organisations that support families with Duchenne. I'm not sure if you have connected with these, but other families with similar experiences, might offer some additional support. Duchenne Family Support

Kind Regards

@SaraC_Scope

jon1108

Hi, thanks for replying. We have a meeting booked with his school on Friday, our sons OT is also coming to see if we can come up with some activities he can join in with. He wants to be one of the boys playing football but they are excluding him because he can't run anymore. Hopefully Friday will be positive 🙏

Jimm_Scope

Do let us know how you get on @jon1108, if this works out well it could be good inspiration for other parents struggling with the same situation.

If it doesn't work out, hopefully we can help find other avenues of support.