"I knew something was wrong because Tom wasn’t doing all the things he was supposed to do when he was supposed to do them. He didn’t sit up until he was 13 months old. Then he was diagnosed with cerebral palsy. The diagnosis was a double-edged sword. You have this panic. You start to worry about what will happen when you die, about who will look after him. Then you start to rationalise it and be a bit more sensible, and we found we suddenly had something to investigate. It was useful to have a name for his condition. We could look things up. We could discuss things with the doctors on more clinical terms. But it was still a big shock, even when you feel it coming.

 

"When we came to NICE it was great to be able to meet other like-minded parents who wanted to give their children a challenge too. But it wasn’t before long that I realised that it’s as much to teach you as it is them. It’s good working practice for parents. CE is a way of life, a way of thinking, it’s an attitude to disability or to ability. We expect him to do things for himself and CE has made us want that for him wherever he goes.

 

"I think it was when Tom came to NICE that he realised he wasn’t the one who couldn’t do anything. At that point he suddenly thought I can do something, I am capable of doing this.

 

"And his social confidence has improved as a result. He’s very confident here. At mainstream nursery he’s still not so confident but he’s a hundred times better than he used to be. He used to be frightened by any little noise. At one time if an able bodied child went near him he would literally curl up into a ball on the floor and pretend he wasn’t there. He still gets upset sometimes but he’s getting much better. The other day we went to see friends and he actually made eye contact and instigated a game. That’s a massive step for him.

 

"Physically now he is doing quite well. He is almost walking on his own. He’s just got to get the idea into his head that he can do it. That’s why we want him to keep coming to NICE. We want him to be as independent as he can be. We want him to be able to make his own choices and he’s learning skills here that will help him get there, like potty training– it’s invaluable it really is. And he really enjoys it. I say ‘Come on, we’re going to school’ and he says ‘Yeh!’ "