I’ve been helping my eldest son (aged 11) pack for his Scout camp this weekend. We’ve been busy looking out his rucksack and camping equipment and packing everything he will need for the two days and nights away. This will be the third time he has been on an overnight Scouting event. The first was when he was 8 years old – at a Cub sleepover at a local hall. As with other trips and excursions, there have been forms to complete, and considerations to make.
Apart from the usual questions about allergies on consent forms, I’ve never really given much thought to the food at these events. There is very little that my eldest won’t eat, and he is always willing to try new things. At most children’s events and sleepovers, when it comes to the food on offer it’s easy enough to guess what the likely foods will be. It’s fair to say that my eldest is usually happy with most options! Even if he doesn’t like something, I know that he will manage to cope with mealtimes on his own, to sort himself out with an alternative from the various options, or just to eat what is offered anyway, even if he doesn’t like it, so that he doesn’t go hungry.
While we’ve been packing, I’ve been thinking about how events such as day trips, nights away and outings are so very different when it comes to OJ. How his relationship with food affects everything from the planning and preparation to his willingness to even take part! I commented to my partner just this week, how different it would be if we were preparing OJ for a two night stay away. It is moments like this when we realise just how much food is part of social events and occasions, and what that means for us and for OJ.
Two nights away for our eldest means excitement, a chance to enjoy a bit of independence from mum and dad, some socialising with friends, and enjoying taking part in activities. Two nights away for OJ could quite possibly mean two days of not eating.
I’ve watched OJ at mealtimes when we’ve been away from home, in situations where he has been served food prepared by others. Granted, we will usually have already prepared his safe food and communicated with the host about this in advance. But we like to try him with new and unfamiliar food, and so we usually wait for the host to offer whatever has been prepared. And we are there with OJ as he is offered the food, talking him through it all. Sometimes it is necessary to be prepared to step straight in. But at other times, especially more recently, I’ve sat quietly and watched and waited, interested to see how OJ responds. How he copes without any intervention from me.
Over the years I have constantly questioned my own behaviour – the part I play when supporting OJ in food situations – and whether my behaviour and reactions may affect his responses to food and mealtimes. It’s a difficult balancing act. Sometimes it’s a choice between being able to enjoy an outing or using it as an opportunity to help OJ progress with his eating, with all the disruption that this involves. There are times when one is definitely more appropriate than the other. Most parents will agree, it’s not much fun dealing with a hungry fractious child, and it definitely has a knock-on effect to the rest of the family and the enjoyment of the event or outing.
I am very aware of the need to let OJ learn to manage his own responses, and as such I have learned that it is important that where possible to step back and let him go first, particularly as he gets older. It’s hard, particularly when I know how it is going to end! It’s always interesting to observe what happens in these situations, and how it has changed as he has grown. When it comes to his eating, I’m not convinced he is able to handle these situations independently yet. His coping mechanism quite simply is to not eat.
The usual scenario…
If OJ is served food by someone else when we’re not at home, and if he is offered something he does not like or something that is unfamiliar, he will not respond by asking what it is, or whether there is anything else. He won’t say ‘yuck’. Instead, he will react in one or more of the following ways:
He will withdraw. He will usually go quiet. He will not make eye contact. He often won’t respond to questions about it, or encouragement to give it a try. He might hum or close his eyes. He may even move back from the table and dance off somewhere else. A typical response is to roll his eyes dramatically upwards, and slowly slide off the chair and under the table. He will sometimes look past the person offering him food and start listening to someone else or appear to focus on something else that is happening. He will quite often lean back in his chair and press his mouth closed, with his eyes looking upwards, or moving side to side (anywhere but at the food or the person offering it). His behaviour appears very rude. My polite, intelligent, verbally articulate nine-year-old disappears into an aloof and uncommunicative state.
In the past I would step in at this point, perhaps apologise to the host, say not to worry – that I have some other food ready for him, or mumble off a quick ‘explanation’ of why he won’t eat. These days I like to wait a bit longer, to observe what OJ does, and how those around him respond. I wait a bit longer in the hope that OJ might start to take some responsibility for managing the situation himself, return to sit at the table, or perhaps to even ask for an alternative.
It’s moments like these that demonstrate just how much food affects OJ, to the point where he cannot even formulate a response. With a very few close family members that he knows well, or on a good day at home with us, OJ is more likely to respond in a typical way, perhaps by making a noise of disgust and then asking if there is something else on offer – but even with close family this is rare. On a typical day at home with us, or when we are out in unfamiliar settings such as restaurants, cafes or friends’ places, the reaction I have described in the paragraph above is what we usually get. Following this, it can take some time to get OJ to come and sit back down at the table, by which point he often won’t want to eat anymore. When he was little, he would be agitated and upset in these situations, and a cuddle would often be enough to calm him down, and possibly enough so that he would manage a few mouthfuls of food. But these days his frustration is more likely to take over; he pushes us away, refuses physical contact or comfort, and he becomes closed-off, hostile to the point of rage, and unwilling to communicate, or to eat.
The after effect…
In chapter 4 of her book ARFID: A Guide for Parents and Carers (Routledge, 2020), Rachel Bryant-Waugh discusses the consequences of ARFID on families. She frames her discussion of this section of the book around four areas that define characteristics of ARFID. The fourth area she describes as the interference with everyday functioning. Bryant-Waugh describes these consequences on family life as being ‘significant and far-reaching’. She adds, ‘families often make adjustments to try to accommodate their child’s difficulty, but this can become more difficult as time goes by.’
Children may be unable to participate in normal age-appropriate activities or opportunities that are open to their peers. They may miss out on things like sitting with classmates at lunchtime or going to a birthday party. They may miss out on school trips, sleepovers, or staying with relatives – all really important aspects of children developing independence. They may be too tired, afraid, overwhelmed or stressed to be able to join in. This can impact negatively on their social and emotional development… (pages 65 – 66)
OJ has never shown much interest in Scouting, and it’s fair to say that like a lot of siblings, he and his brother are very different and have different likes and interests. But at the moment, with the limited range of foods that he will accept, I can’t imagine OJ being able to enjoy two days away with a group of friends, or on a school trip. At least not without significant preparation and input from myself and my partner, so that the adults in charge will be equipped with OJ’s safe foods in order to ensure he will be able to eat while he is away.
This is where the issue becomes about so much more than just food itself. Sure, we can give staff and trip leaders OJ’s safe foods to take as an alternative. But how will OJ feel eating different food to his peers at mealtimes? Can we reasonably ask staff to take on the additional task of preparing something different for OJ at mealtimes, and will this be feasible or even possible depending on the location and circumstances? And what about staff or group leaders who are less willing to accept OJ’s eating issues as being more than just fussy eating? Without a diagnosis of anything in particular, it is often very hard to feel that we are taken seriously when we express our concerns.
A good experience:
Last year, OJ’s class went on a day trip – the plan was to hike from their school to a local wildlife spot, where they would enjoy a number of outdoor activities, some arts and crafts, and make pizzas for lunch. OJ can thankfully now eat some types of bread, and at home he likes making his own ‘mini pizzas’ – very specifically, pitta bread with tomato paste and a small amount of ham on it. Before this particular day trip, I discussed the pizza-making plans with OJ’s teacher, who was wonderful about it.
She was fine with me asking about the dough they were going to use. She didn’t blink when I mentioned OJ’s intense dislike of cheese, and how he sometimes won’t eat food that has had cheese (or other food that he doesn’t like) touching it. She was very kind when I talked about the potential for OJ to refuse to eat at all. She even asked about the brand of ham and tomato paste that OJ accepts, so that she could buy it beforehand. We felt very supported, and I sent OJ off to school that day knowing that he would be able to take part in all the activities with his friends (including the pizza-making) and to enjoy his day.
Needless to say, if OJ had not been able to eat for some reason, or if I had not discussed the food with OJ’s teacher beforehand, then of course he would have lasted the day without lunch, and it wouldn’t have been the end of the world! If he hadn’t been able to eat, he would simply have been a bit hungry. That was never my main concern. Quite apart from a rumbly tummy, OJ would also have missed out on taking part in the lunch-making activity. He might have slipped into his usual pattern of behaviour, refusing to respond or engage. This would have had a knock-on effect to the staff and other children on the trip – with time being taken away from the activity at hand to deal with OJ’s behaviour. If OJ hadn’t eaten (again – not a big deal in itself) his hunger may have affected his ability to take part in the afternoon activities, and his energy levels on the walk home.
The wider context:
Should I step back entirely and let these events and trips happen without my intervention? Will OJ eventually learn to start eating independently? We have tried this. Over the years, I have learned that without intervention or support, OJ will usually not eat, will not take part, and will withdraw and be on the periphery. It is more than likely that without our intervention, these trips and events will become a source of stress and anxiety for him. Is this to be his experience of trips and events throughout his childhood and teenage years? There are social and emotional implications to consider, and some of these I believe could have far-reaching consequences into OJ’s adulthood. I remember one meeting with a consultant in 2017 before OJ started school, who urged us to ‘address it now’, while he was still young. For these reasons I continue to step in and prepare beforehand, so that OJ can take part in events, social outings and normal childhood activities.
A fear of food and such a strong aversion to it (as well as the resulting behaviour), is not something that I’ve seen many adults understand or have empathy for. It was a new one for us as his parents too! When I talk about OJ’s eating issues with other adults who aren’t as sympathetic as his teacher was in this case, it is difficult to get them to appreciate that it is not just about the eating and the food itself. It is about the wider context – the other things his eating has an effect on, and the implications for him socially and emotionally. The impact on his brother, and on us. For them, what might look like a lot of fuss over one day trip, is a process we have to undertake every time we get an invite to dinner, to a playdate, an outing, a family event or a school excursion. It’s a choice between it being an enjoyable experience, or an upsetting one. And how we approach it can affect the rest of the day, or even the day after.
When it comes to food situations, everything has to be planned for. Phoning ahead to find out what the restaurant offers. Asking their permission to bring our own food for OJ. Wondering if there will be anything on the menu that OJ will accept at events such as weddings. Packing a bag of safe foods everywhere we go! Explaining it to the adults involved. It is exhausting at times. But I don’t feel uncomfortable anymore when we explain to the friend who has invited us for a delicious home-cooked meal that OJ will be eating rice crackers and food from the baby aisle at the supermarket. I am well used to asking if I can use their microwave to heat up the plain cooked pasta I have brought with me to their house for OJ’s dinner.
Arriving at a restaurant or café without knowing what is on the menu can make for a difficult and unpleasant evening for us. Last-minute invites, spontaneous decisions to ‘oh, let’s eat there!’ are virtually impossible, and usually involve a quick dash to a nearby supermarket for some of OJ’s safe foods. Invites to parties, like a recent one OJ was invited to where the children were going to have McDonalds, mean the usual round of preparation and explanation and contingency plans. I discovered that not every McDonalds restaurant offers the same options as part of their happy meal deals. OJ turned up to the party with a gift for his friend and a bag of his safe food. (Incidentally, a happy meal was purchased for him, but he didn’t even try it).
I feel it is only reasonable and responsible for myself as OJ’s parent to be open with other adults who interact with him about his eating issues and the potential disruption it can cause; not only for OJ’s own comfort and enjoyment of trips, playdates and outings, but also so that it doesn’t affect others taking part. It can be awkward though, especially when you feel you are being perceived as a fussy parent, overbearing, or melodramatic.
What the future holds:
As OJ gets older, we are seeing a little more hostility and physical resistance in his behaviour around food that wasn’t such an issue when he was little. I’m not ok with just letting OJ go off on outings unequipped to deal with mealtimes ‘off the cuff’ – leaving him open to sanctions and reprimands and misunderstandings – and putting those who are responsible for him in a situation where they may find themselves dealing with behaviour that they might be surprised at from a child who is otherwise extremely well-behaved and well-mannered. For OJ, it is the long-term implications that worry me. Bryant-Waugh touches on this in her discussion of consequences, again in chapter 4:
Over time they may become more socially isolated or subjected to teasing. They may become unhappy. They may struggle to manage their behaviour, with loud displays of distress, frustration or anger when out, because the situation is too challenging for them. They may fall out with their siblings. They may not be able to eat anywhere other than at home. (page 66)
It would be great to think that every teacher and group leader would be as accepting and kind as OJ’s teacher was on last year’s class daytrip. But experience has taught me that this is not always the case. And this is where a formal diagnosis might help us, on a day-to-day basis.
It can be frustrating when others don’t understand or when they don’t take our concerns seriously. It is upsetting when a staff member brushes it off because they have failed to consider the wider implications, or when a parent on a playdate gives a patronising sigh and dismisses as ‘a phase’. I don’t expect everyone to understand all of the time, but it would be nice to have people respect our lived experience of nine years, and to appreciate that in OJ’s case we might actually know what we’re talking about…
Going forward, I would really like to get to the point where I can send OJ off on a school trip, or to a playdate or a birthday party without having to fear what the responses of others will be. And in the knowledge that he will be able to cope with the food independently and enjoy himself. We live in hope!