“Isaac’s anxiety is his biggest barrier,” explains his mum, Emily. “It manifests into severe headbanging, and he needs our attention a hundred percent of the time. He’d often wake up in the night and if we aren’t there, he would instantly start harming himself. Although we knew we needed help and a break from caring for him, for us it wasn’t an easy decision to make.  

“As a parent you know your children inside out and it’s not very easy for someone else to take over that role, especially when the needs are as high as Isaac’s. Although I knew how desperately I needed a break, I felt really guilty for needing it. However, Nelson Lodge understood how I was feeling, and they really set my mind at rest. I could see they cared, and that had the knowledge and experience for Isaac’s needs, so we began the transition for him to stay there.

“The first few times he stayed I was worried. But I knew I could call or message them to check how things were, and they always responded quickly so I knew he was ok. It was difficult at first for him not to be at home, but as the nights added up and I felt more reassured, I stopped worrying and began to feel much more rested. 

Isaac has come such a long way and they’ve really helped to expand his horizons. Together we’ve set targets for him so he can experience new things. He’s now getting his hair cut which is something we could never do, sitting at the table to eat, and having a go at arts and crafts – although cleaning is still his favourite activity! He’s sleeping much better and uses a safe bed there. He took to this so well that we now have one at home. It’s something we wouldn’t have considered had we not known he was happy in the one at the lodge.   

One thing that really stuck in my mind was when they asked if they could remove the sound monitor from his room as he was sleeping so well and to protect his privacy. I said that was fine, but for them to think of his privacy I just thought ‘wow, that was amazing’. I know for Isaac that’s the last thing on his mind as he doesn’t function at that level, but yes, he does deserve privacy and it’s great they recognised that.  

Isaac is also visiting new places and goes for days out. I always get updates and it’s so lovely because even though he’s not with me, I love him and I want to know he’s having a nice time. So when I get a message saying he’s has been on the carrousel twice, he’s enjoying it and I get a little video, it’s just so reassuring and makes me so happy to see him happy.  

Nelson Lodge really has exceeded my expectations. I expected support but not as much as we’ve had. Thanks to them I feel a lot stronger in myself to deal with the ups and the downs and we can spend some much-needed time with his younger brother, because he misses out on a lot.  

What they’ve done for Isaac has been enormous. He’s such a wonderful, funny and cheeky boy, and he loves his stays there, always chatting about the people there and what he’s done. They’ve given us so much and we really appreciate all the work they do.