"It’s taken a long time to figure out what works" - Victoria and her family's ARFID story

Victoria lives in Dorset with her family, puppy Astro, and two rabbits.

They didn’t know anything about ARFID until their child began to eat quite a limited diet as a toddler.

One day, a friend who had been studying eating disorders, asked if they knew about it, and the pieces began to fall into place. They’ve had some tough times throughout Andy’s childhood, particularly because friends and family haven’t always been able to understand that ARFID is real. It’s made family life quite hard at times.

Victoria and Martyn have had to get quite creative with ways to help Andy manage, and have learnt not to worry about what other people think. Over the last few years, things have begun to get a bit easier, but the day-to-day impact on the whole family is still something they’re learning to manage.

In 2023 Victoria and Martyn joined our 8-week Endeavour course to learn more about caring for a child with ARFID. They found it really helpful and would recommend it to other parents.

Here's Victoria's story...

Andy is 9 now, and things are definitely getting better, but for a while it was really, really hard.

When Andy was weaning, he ate everything I gave him! But as he approached his second birthday, he started to refuse more and more foods. By the time he started at pre-school a few months later, he had a really limited diet. He wouldn’t eat the food they gave him, so I had to bring in tins of spaghetti hoops for them to heat up. That’s what he ate, every day.

I’d had to fight for that though. To begin with, they called me in and told me he was ‘just’ a ‘picky eater’ and that it wouldn’t be tolerated; he had to eat the same food the other children had, or nothing. They had this conversation in front of him and he understood exactly what they were saying. I felt so bad for him, he was already being excluded from normal, everyday life and he wasn’t even 3 years old yet.

From then until quite recently, his diet didn’t really change. He ate the same few foods every day. Nothing we tried changed that. Me and my husband got used to it, but we definitely got judged when we were out. I remember going out to eat with the extended family once, many years ago, and when we got there I discovered the restaurant was only serving roast dinners. I’d looked at the menus before we left, and had seen they had chicken nuggets on the kids menu, so thought we’d be fine.

I panicked a bit when I realised there was nothing on the menu he could eat, and a family member said I was overreacting and being ridiculous - Andy should just eat the bits of a roast dinner that he liked. Nothing I said would convince him that it just doesn’t work like that! These sorts of attitudes make it so much harder when it’s already such a struggle every day. It’s so clear to me that Andy can’t help being the way he is, and like anyone else he should be treated kindly, and with respect.

I have developed ways of helping Andy cope with food, but it’s taken a long time to figure out what works. For example, if he’s going to a birthday party where the food is likely to be a bit chaotic, I take a pot of tiger balsam with me and rub a bit under his nose when it’s time to eat. He finds the smell of some foods quite difficult, and this helps block some of those out. I’ve also got a balaclava he can wear which covers his nose and helps mask food smells. I know people have stared at him when he’s wearing it, but luckily he doesn’t seem to notice.

Our big breakthrough came when a friend heard about ARFID and asked me if I thought Andy had it. Suddenly, everything clicked into place. I hadn’t known anything about it before, and just thought it was to do with his autism diagnosis. But once I heard about ARFID I began to do more research and found the Endeavour course by Beat.

It’s made such an enormous difference to us - it’s really been life changing. I’ve learnt so much about how to help him manage, and things are slowly getting better. In the last month he’s tried bread, and even burgers. When he first asked to try a burger I thought I’d explode with excitement and happiness! It’s been a long road, and I don’t know if he’ll ever eat ‘normally’, but for now I’m taking the wins where I find them and celebrating the small victories.

* To protect the privacy of certain individuals some names have been changed.