“My lowest point was at a Tesco’s. Toby could go in any Tesco’s in the western world except for our local one. We got in the door and he started screaming, over and over, and it got louder and louder and the rest of the store was getting quieter and quieter. Eventually I was approached by the manager, who was very understanding and I said, I just need this – whatever it was. And she said ‘just have it and go,’ and I left the store sobbing. I didn’t go out for a good couple of years after that.”
“I learned that you can’t spontaneously do anything; a day trip for example has to be planned with military precision,” said Melissa.
“In mainstream school he just couldn’t cope. He would sit under his desk. I would collect him and he would throw his bag at me, spit in my face; just the anxiety of the day was too much for him.
“Once he changed from mainstream school to supported school, he knew instinctively that was the place for him, he became much calmer and more accepting of the way things were.”
Toby is now in 6th form at Fosseway school.
“I was warned he might never speak but now he will talk your ear off. He has ambitions to go to catering college and live independently and I would love that for him. I know he will always need care, but if he’s able to have some independence then that would be fantastic.
Melissa now coordinates a befriending group called Face2Face, delivered by the charity Scope. This group is specifically for parent-carers and all the befrienders are parent-carers themselves.
“Having someone who understands what you’re going through really makes all the difference. Sometimes the last thing a parent of a disabled child wants to do is pick up the phone and ask for help, but the differences I’ve seen in the people who have used this service really do show its value.
“I knew one mum who couldn’t leave the house. I put her in touch with a befriender who just took her out for coffee regularly and it has made such a difference to her life. She now runs her own support group. I just want people to know that it’s OK to do something for yourself, get out of the house and debrief.”