If your child won’t eat, where do you start and what do you do? What strategies do you use? I’d say most parents have probably faced fussy eating episodes with their children at some point along the parenting pathway. In the early days, when it came to OJ’s refusal of food, like many parents we welcomed input and advice from friends and family as well as observing how other parents dealt with their children’s fussy eating. We tried stuff that friends and family suggested. Picked up tips from other parents at playgroups and playdates. We looked up ideas on the internet.
Most of the ideas and advice we followed came to nothing when we tried them with OJ. We started to notice a difference between his behaviour around food compared to that of his peers. At playgroups, even the fussy eaters would eat at least one item on the menu. But not OJ. At playgroups when snack time was announced, he would run to me to be lifted up, he would tremble, bury his head in my shoulder, and try to hide. On playdates, friends would offer lovely food – the usual toddler fare – grapes, cheese chunks, yoghurt, mini sandwiches, bread sticks and hummous, carrot and cucumber sticks, raisins, perhaps a nice home-cooked pasta with sauce, or slices of pizza. OJ would refuse to come to the table, or he would climb on my knee and hide away. Sometimes he would dutifully sit on the chair he was offered, and look quietly at the food on the table, his face blank…
You’d think amongst all of that there would be something that he would like. But OJ didn’t eat any of those things. In fact, he seemed frightened to even try it.
It’s easy to begin questioning yourself, wondering if you’ve missed something or done something wrong. You ask yourself if you’ve been too tough. Or too soft.
When your child gags because they are sitting next to someone eating strong smelling food, how do you deal with that? When they run off and hide, but you know that they’re hungry, do you coax them back with offers of a lovely pudding? Or do you punish them? Do you make sanctions or try rewards? Do you resort to bribery?!
Over the years we have tried all of that with OJ. And in the end he still refused food. I got used to taking Readybrek sachets and a little bowl with me to playdates, or cooking some pasta before outings and events and then phoning ahead to check if there would be a microwave so that I would be able to heat it up. (To this day OJ will only eat pasta if it is hot).
We’ve tried a lot of strategies over the years to encourage OJ to try food. None of these had any lasting effect. Here’s a list of a few of them:
- Planting, caring for and harvesting his own veggies, and then cooking them up together.
- Getting OJ to help us cook and prepare meals. (He was quite happy to do this, but he wouldn’t eat the result).
- Role playing with toy kitchens (he loved the toy kitchen as a toddler).
- Purposely not taking his safe foods with us when went places! Not a fun outcome.
- Cutting bread into cool shapes, making food into patterns and ‘faces’ on the plate
- Compartmentalised plates, and separating out his food
- Offering the same food prepared or presented in different ways
- Making reward charts and offering stickers.
- Offering treats as a reward (food ones and non-food ones)
- Sanctioning and disciplining him for not eating. I feel guilty even writing that…
- Not giving in. Standing our ground, and saying ‘he’ll eat when he’s hungry enough’. Possibly the most upsetting strategy on this list. (We got to just under 48hours with a nearly three-year-old OJ, by which point I’d been up for two nights with a fractious hungry toddler and we were all shattered and beside ourselves)
- Hiding the good stuff (in sauces and smoothies)
- Making sure we all ate meals together around the table.
- Watching TV while eating (we were hoping the distraction might help). Sadly, not even Peppa Pig made the difference…
- Appealing to his intelligence as he got older – explaining the reasons why he needs to eat nutritious food.
- Stepping back and laying off the pressure completely, letting OJ eat what he wanted.
Do these strategies work for those with other types of eating disorders? Does someone with anorexia simply start eating if someone tells them that not eating could weaken their internal organs?
We began to realise that what worked for family and friends who described their children as ‘fussy eaters’, wasn’t working for OJ. We observed that his behaviour around food seemed different to that of his peers. He was so utterly resistant to eating anything other than a handful of ‘safe foods’. He appeared to have a real aversion to food. There was a fearfulness about it. There was something different going on, something more than just the food and eating itself. Something that we suspected was beyond our capacities to deal with.
So, what happens when the strategies don’t work? When your child only eats one thing, or maybe two? When he is due to start school but is existing on only one or two foods? When he appears frightened by food! You start panicking because he is missing whole food groups. You feel lost because your child starts withdrawing from normal social interactions with his peers. Where do you go from there?
Lots of the strategies we have tried over the years have been our own, and some have come from health professionals. The speech and language therapist who treated OJ as a toddler suggested cutting food such as apples very thinly so that his under-developed mouth muscles could manage the food more easily. She said to get OJ to sniff and lick food that he was offered before he tried tasting it, so that he could get familiar with the smell, taste and texture gradually. It was she who suggested the compartmentalised plates.
We have had our small successes with strategies along the way. One or two have lasted, and others definitely haven’t. When he was about 4 years old OJ became interested in ballet. He started going to a weekly class, he asked for a ballet-themed cake for his birthday, and he loved wearing his ballet kit to nursery. By the time he started school, he was receiving treatment from the food and eating disorders team at Great Ormond Street Hospital (GOSH). They suggested tapping into his love of ballet by saying that ballet dancers needed to be super strong and to eat really healthily, so that they would have enough strength and energy to be able to dance. We could see OJ’s mind processing this. We talked to him about it, and it seemed to make sense to him. I remember him trying some broccoli that evening at dinner. That was a huge achievement, because up until then he would not even accept vegetables on his plate.
Sadly, following that one evening of success, the strategy didn’t really work long-term. Whenever we tried to say to OJ that he would need to eat good food if he wanted to be a ballet dancer, he became upset and resistant, and withdrew into his usual food behaviour patterns.
A couple of times, discussions at school have been the platform for strategies we’ve used at home. A few years ago OJ’s older brother mentioned food pyramids after doing a topic on food at school. We looked some up on the internet, printed out a copy, and stuck it up on the wall at home. We all tried as a family to make sure we were getting the right amount of food from each food group. The boys enjoyed it, and it was the source of quite a few interesting conversations. Scarily, it made us realise just how much OJ was missing in his diet – nearly whole food groups! Again, the novelty wore off, OJ became less interested in it, and I came in one day to find that he had graffitied it – he’d circled his safe foods and the sugary foods with smiley faces, and done massive crosses or lines through most of the other things. He started making fun of the food pyramid and the graffiti got more elaborate.
In recent years, OJ has become more aware of us trying different strategies. As he gets older he is starting to get more resistant to us encouraging him to try new foods. We have tried taking the pressure off, letting things go a bit. Stepping back from it so it is less intense. Hoping that by stepping back it might help.
There is a very specific order to the way he emotionally reacts when he is presented with food or when he thinks we are trying a new strategy. I describe it as ‘suspicion, overwhelm, shutdown, meltdown’.
At times, our discussions with other adults (including health professionals) have left me very frustrated, and I don’t feel that they understand the wider impact of OJ’s eating. I’ve been asked ‘does he have porridge?’ does he eat Weetabix?’ does he drink milk?’ and when I say yes to those things, they seem unconcerned and comment that at least he is getting some dairy and grains. But they miss the point. OJ only eats certain things if they are hot, or if they are presented in a particular way. Which makes it very difficult if we are out and about, for example. With such a limited range of foods that he accepts, it is not simply a case of offering him something else.
As he gets older, OJ is also becoming aware of the potential long-term outcomes of poor eating. And yet it isn’t enough to ‘scare’ him into eating. One day last month, I picked the boys up from school and I asked OJ how his day was. He replied, ‘it was alright apart from PSHE (Personal, Social, Health Education)’. When I asked why, he said that the current topic in PSHE is healthy eating. In the lesson that day they had looked at the effects of unhealthy eating. OJ mentioned there had been a slide on the whiteboard listing potential illnesses and diseases that unhealthy eating can lead to – he mentioned type 2 diabetes and heart disease. OJ said it was scary and that he is worried that he might get those diseases because he can’t eat. Is this what it will take to get him to start eating? Going by his behaviour and resistance to meals in the few weeks since that afternoon, I think not.
On one hand, now he is a little older I think it’s a good thing that OJ is talking more openly with us about his thoughts and feelings around food and eating. But on the other hand, I’m not sure where and how to go with it. How do we get him to that next level? What strategies are there for dealing with ARFID and how are they achieved?
When OJ was at GOSH, the team were very much focused on addressing his anxiety around eating, in particular his reluctance to come to the table for meals and his willingness to try new things. Their strategies for us included:
- Having his safe foods available for events or times when OJ needed to eat independently (trips out, school lunches…etc).
- Serving meals from the table, so that OJ could choose what went onto his plate or try things himself from different bowls.
- Serving OJ’s safe foods alongside the family meal; the idea being we could all sit down to enjoy our meals together in a calm and relaxed atmosphere, with OJ more likely to come to the table without fuss, because his safe foods were on offer. After which OJ may be more willing to try some of the food from the meal the rest of us were having.
- Introducing new foods in very small amounts in ‘tasting sessions’, and repeating this over and over for one new food at a time, so that OJ would slowly become used to it.
Their approach was to minimise the stress that we were all experiencing at mealtimes, with the aim of making mealtimes more enjoyable for OJ and in the hope that he would then be more open and accepting of new foods. I still believe that dealing with OJ’s anxiety around food is where the focus should be.
The result of these strategies from GOSH (which we implemented at home ourselves) had a small but positive effect. OJ was more willing to come and sit at the table for the start of meals. We were all able to eat together, at least for the first few minutes, and things were a lot calmer. He went off to school with a lunchbox of his safe foods, and we could relax knowing that he would have enough food to last the school day.
Over time though, things have gone downhill. We have found that despite calmer mealtimes – waiting until he’d had a bit of his safe food before offering him tastes of new food to try – that OJ never really wanted to try new things. The behaviour and the response remained the same, no matter how we approached it. His school lunchbox is exactly the same as it was nearly five years ago, because he refuses anything new or different in it. OJ will still refuse to come to the table if we serve a meal with food that he doesn’t accept. His behaviour is becoming more challenging, and he is more wilful. He gets a lot more angry.
Worryingly, in the past eighteen months, OJ’s food repertoire has narrowed. He is starting to refuse some of the foods he was beginning to accept. One of his main safe foods – sausages – is no longer being tolerated. We are starting to panic about what the future holds, particularly as OJ goes into pre-puberty, and growth spurts, and the transition to secondary school and the increasing independence that comes with it.
We’ve had a gap of more than three years since OJ was last given any clinical help or guidance for his eating issues. One thing that concerned me during the time when OJ was being treated, was how little there seemed to be in place to deal with these kinds of eating issues. To be honest, at times it felt a bit like even the health professionals didn’t really know exactly how to approach the treatment.
During a pre-assessment discussion when OJ was a pre-schooler, I showed a group of health professionals a chart I had made for him. We had been struggling with OJs tantrums at lunchtimes. Like most pre-schoolers, he usually arrived home from nursery hungry after a busy morning, and ready for lunch. For OJ, this time of the day was often the worst for food refusal. So, to try and support him with this, I had him choose what he would have for lunch before he left for nursery in the morning; in the same way his older brother chose his lunch from the school dinner menu each morning, OJ would use the chart I made to choose what he would have for lunch too (see image below).
I laminated the chart, and cut up squares containing pictures of different foods, some containing a picture of OJ’s safe foods and others with pictures of new things I wanted him to try. I put velcro pieces on the cards. OJ would select which items he wanted to have for lunch and stick them on the lunch section of the chart for that particular day. I would encourage him to choose some items from his safe foods, and at least one new item to try. I even left some squares blank so that he could use a wipe-clean marker to draw a picture of other foods he wanted that I hadn’t included. Call me optimistic, but I was always hopeful his food repertoire would expand! When he came home from nursery tired and hungry a few hours later, I could point to the chart and show him what he had chosen. This helped to minimise OJ’s stress because the decision about what to eat had already been made earlier. This made lunch times a lot calmer, but sadly it didn’t make OJ any more willing to try new things. He was usually willing in the mornings to choose an item from the unfamiliar foods section, but I can’t remember him ever actually trying any.
What is relevant about this example, is how intrigued the health professionals were about the chart I had made. My heart sank a little bit, as I wondered whether they had any more idea than I did about how to treat OJ!
Very early on it became apparent pretty quickly that OJ’s eating issues were going to be tougher to overcome than we thought. We have now accepted that the road to getting him eating independently is going to be a long one. What worries me is the lack of resources, guidance and support available. The difficulties getting a referral (click here for a blogpost on our experiences of this). The fact that we don’t know where to get help from. We wonder, is it even out there at all?
I am currently doing some more reading and research into how ARFID is treated. We have had little to go on in the past nine years beyond our own strategies and ideas. And we’ve been left on our own to implement them. Where we have needed help, we have found it to be very limited. From what I have read in ARFID groups on social media, and in discussions with others, I think this is also the case for a lot of parents of children and teens with ARFID. At the moment, treatment pathways and referral systems to getting treatment aren’t a clear or straightforward process, and this needs to change. For now, we are focused on getting some new strategies for OJ, along with much-needed support and guidance.