We have recently been away over the bank holiday coronation weekend, to this gorgeous house, called Schoolhouse Fenwick in a small village called Fenwick in Northumberland.
The four of us went with my friend Madeline, one of the most amazing and strong women I know along with her 2 kids, Kian 16 and Evie 11.
Kian is an amazing young man who has Wolf-Hirschhorn syndrome, if you haven’t heard of it the disorder can affect several parts of the body with delayed growth and development, learning disabilities, low muscle tone and seizures. So this weekend was a little break for us all.
The house is specifically adapted for people with disabilities with a wet room and accessible bedroom on the ground floor and a beautiful garden, perfect for all of us.
Noah & Evie had a great time playing in the garden and the house and they were barely on their phones at all! (A real novelty). They get on really well and understand what it’s like having a sibling with special needs.
When we got there Ryan found his spot for the weekend on the sofa where he could see us in the kitchen and hear us. When we were in the house this is where Ryan sat, his safe space that he had picked and felt comfortable in. He spent a little bit of time in the garden in the sunshine on the Saturday afternoon and on the last morning he ventured into the kitchen for breakfast, but apart from that he was in the same spot, which was absolutely fine because he was happy and comfortable there, shouting when he wanted anything!
Kian is a wanderer and likes to be into everything, which is really difficult when you are away from home. He wanted to be into everything and explore, which is a natural thing for a child to do, but he can’t be left alone to do so with so many things to get in to, but he doesn’t understand that, which results in meltdowns and him struggling to regulate himself. By Saturday night he was so overtired and over stimulated he didn’t know where to put himself & Madeline was in the firing line all the time trying to calm him down, she came home covered in bruises, which is not unusual. Kian is also a very loving lad, he loves to snuggle and stroke your face and laugh at you when you do something funny!
On the Sunday we wandered around Seahouses, Kristian took Noah and Evie in the amusements and Madeline and I pushed the boys in their wheelchairs along the harbour, getting back up from the harbour was a struggle! We passed a tattoo shop and Madeline asked me what tattoo I would get that represents us, my answer was something that represents being strong, because that is what we are strong women, who have a very strong bond and friendship. If it wasn’t for Ryan and Kian we would never have met & I’m so grateful we did.
We had a really lovely weekend but it does make you realise that although you can escape from home you can’t escape from the disabilities, wherever we go the behaviours, struggles and normal day to day tasks we have to do with our boys follow. However we can’t wait till the next time we go!! 💙💙
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