Chapter 17
In This Chapter
Dealing with your emotions
Chatting with children and teens about their gluten-free lifestyle
Deciding whether the entire family should give up gluten
Letting your kids have some control
Getting out and about with gluten-free kids
Letting go a little bit: Babysitters, school and other scary situations
Helping teens live gluten-free
A dults needing or choosing to adopt a gluten-free lifestyle is one thing. Your kids needing to be gluten-free is an entirely different ballgame. Parents find it intensely worrying when something is wrong with their child and even though most doctors are now very aware of coeliac disease, the process of getting a clear diagnosis isn’t always straightforward.
Maybe doctors see a lot of overanxious parents and have to constantly reassure them that bub is doing fine. But when you’re the parent and believe you have plenty of evidence, over weeks or months, that your child isn’t thriving — and you still get the same placatory treatment — you experience absolute anguish.
It took almost 12 months and numerous visits to doctors (including two paediatricians) for Sydney mother Rebecca to get a diagnosis for her little girl. By then toddler Charlotte’s weight had dropped from the 75th percentile to below the 10th; she was listless, quiet and withdrawn, and had stopped crawling or walking. For Charlotte’s mum, the relief at finally learning what was wrong and knowing something could be done about it was enormous, and overrode her feelings of concern for the future. (If you want to read the entire story, you can find it in Chapter 1.)
For most parents, however, a diagnosis is much more straightforward and the news that their child has a serious illness requiring a new diet for life is overwhelming.
We’ve loaded this chapter with information to help you deal with your roller-coaster of emotions, the practicalities of having kids on the gluten-free diet and the psychological impact this may have on your family.
Everything’s different when your child’s the one on the gluten-free diet: The way you feel, the way you communicate about the diet, the resentment you feel towards parents who don’t have to make special arrangements just to feed their child, the preparations you make to go anywhere, the way you shop, the foods you buy, the school lunches.
If you’re a parent — or someone who loves a child as a parent would — and your child has to adopt a strict, gluten-free diet, your emotions probably resemble a roller-coaster. You know: up one minute, crashing the next, as in Figure 17-1. It seems like just when you’re feeling great about the diet, you find out the kids had a birthday party at school and your child was the only one without a cupcake. Your emotions go from flying high into free fall.
In addition, you have other nagging concerns about your child’s future. See whether some of these strike a familiar chord.
Well, that’s true. And forever seems like a really long time, doesn’t it? What happened to those visions you had for your children — the perfect life, where things are easy and magical? Well, for one thing, that’s not reality.
People forget to dream about the hardships their kids may face and how they’ll handle the difficulties in their lives. Yet handling adversity is one of the most important skills they will ever learn. Furthermore, what you may initially see as difficulty may actually be a good thing in your child’s life (and yours). See the ‘Focusing on the good stuff’ section for more information.
You imagine your kids’ lives as being smooth and painless, and part of that means fitting in. But kids are different in many ways and although we’re not downplaying the importance of food and the part it plays in everything people do, your kid’s differences are okay.
Kids are all different — some kids have blonde hair, others have red; some prefer skateboarding to soccer; some are in wheelchairs and others wear glasses. To pine away for her conformity is to send a signal that something about being different in this (gluten-free) way is bad. The last thing you want to do is send that message.
Parents worry that their kids won’t fit in or won’t be accepted because of their ‘different’ diet, but kids can fit in regardless of what they’re eating. Fitting in has much more to do with their attitude than anything else.
No, he’ll be better than okay, because he’s healthy! But Danna agonised over this same thing when her son Tyler was first diagnosed. Oh, sure, friends and family told her, ‘It’ll be okay’ the way friends and family do in tough situations. But she felt they were just placating her — after all, what did they know? They hadn’t even heard of coeliac disease before she explained the diagnosis. And at the time she didn’t care much what adults thought of the situation — she wanted desperately to hear it from a kid: ‘I turned out just fine.’
The truth is, being coeliac isn’t a big deal for children, although it seems so for their parents. This may be because they live in the present and are not looking ahead, predicting what difficulties might arise in the future. They might look as far ahead as a school party and predict that they won’t have much to eat because they’ve had that experience before, but they won’t go much further than that. Or it may be that most children are naturally optimistic, at least into their mid-teens, and don’t spend time thinking up worst-possible scenarios. If children are diagnosed young, they will have limited experience with food containing gluten so they’re not aware of what they’re missing. So rest easy, parents. Your kids will, in fact, be just fine. And so will you.
If you love a child the way a parent does (even if you’re not the actual parent, but are, nonetheless, as emotionally entwined as a parent is), you can comprehend the this-hurts-me-more-than-it-hurts-you Pain Amplification Phenomenon (PAP). Seeing a bloody knee or a broken heart truly causes pain — palpable pain — for the grown-ups who love that child.
Those of you who are agonising over the fact that your child has been diagnosed with a condition that requires a strict, lifelong, gluten-free diet may have trouble accepting this idea at first, but it’s true. Dealing with the diagnosis is harder for you than it is for your child. In most cases, kids are resilient. They accept what life dishes out and they make the best of it. Maybe grown-ups should take note.
Being gluten-free may be a good thing in your child’s (and your) life for a lot of reasons. Make your own personal list to pull out when you find yourself feeling frustrated or depressed. Here are a few to get you started:
Whether your child is 18 months or 18 years old, now’s the time to talk, and the entire family needs to be included. How you do this depends on your style, your intra-family relationships and your child’s ability to understand the intricacies of the subject matter. Talking to your children is step one in making sure they develop healthy attitudes and habits.
Even if your entire family doesn’t choose to go gluten-free, having a gluten-free child in the house affects everyone. All the family members need to know about your child’s condition, the diet and how to handle a variety of situations that may arise.
We’re not suggesting that you organise an extended family reunion and include fifth cousins thrice removed. But you do need to include your immediate family in some type of discussion and continue to keep them informed over the years.
Everyone you talk to about the gluten-free diet — and the conditions that require it — finds out how to feel about the gluten-free lifestyle from you. Is being gluten-free a bad thing in your life? A scary thing? Good thing? How you talk about it has a far greater impact than you may realise.
If you talk to family members in a dead serious, sombre way, you’re going to scare your kid right out of her PJs and cast an impression of doom and gloom. This conversation should be upbeat, lighthearted and interactive — after all, becoming gluten-free is an okay thing in everyone’s life. If you can’t remember why, check the earlier sections in this chapter or look at some of the thoughts in Chapter 19.
The most important person to stay upbeat around is your child. For the rest of her life, how she feels about being gluten-free depends on you and your attitudes. She doesn’t know how to feel — this is all new to her (granted, it’s new to you, too). Give her the advantage of starting off upbeat and optimistic. If she’s like most kids, she’ll take it from there and will provide amazing strength and inspiration.
The level of detail you get into depends on your child’s age, maturity and ability to understand this type of thing. In a nutshell, you want to give her the ‘why’ she’s gluten-free (to feel better), the ‘what’ (what gluten-free means), and the ‘what now’ (what she can eat now that she’s gluten-free), which is really most important, because that’s what matters most to her.
When you start the discussion with your child, remember to focus on the benefits of the diet. Say something positive like, ‘You’re going to feel so much better now that you’re going to be eating gluten-free foods!’
Kids think in specifics. Drive the point home to them with something they can personally relate to, like, ‘You know how much your tummy’s been hurting lately?’, or ‘You know how tired you get sometimes? You’ll feel much better now that you’re gluten-free.’ Specifics can help children understand exactly what’s going to be better on the gluten-free diet.
Don’t underestimate what your kids can grasp. When explaining the diet to your child, use the real words like gluten (spare them the carboxymethyl-cellulose, though, okay?). Even if your child has developmental delay or learning difficulties, use the proper terminology so that he can better communicate what he can and can’t eat to others.
Of course, he’s not going to understand everything at first (did you?). Give him examples he can understand — explain that gluten is in many of the foods he used to eat, like bread, biscuits and cakes and then quickly let him know that he can eat special biscuits, cakes, bread and other things instead.
Always focusing on what your child can have is important. Any time you or your child asks about or points out a food that’s off-limits, try to point out something equally as scrumptious that’s gluten-free.
Of course, you’re not going to say, ‘You can’t have those biscuits anymore, Jordan, but look here! You can eat all the broccoli your little heart desires!’ That won’t win you any brownie points, nor will little Jordie be likely to buy into this new diet with much zest. Instead, you can accomplish three things at once here:
A couple of simple sentences do the trick: ‘You’re right, Jordan, you can’t eat those biscuits. But you can have these because they’re gluten-free.’
Help your child make the connection that gluten makes him feel bad. You should use this in a couple of situations — first, whenever you talk about gluten: ‘You’re right, you can’t eat that. It has gluten and gluten makes you feel yucky.’ This way, he knows to associate gluten with feeling bad — and that’s a very good thing. To state all this scientifically, the desire to cheat is inversely proportional to the realisation that gluten makes you sick, as shown in Figure 17-2. When you can chart something, it must be true, right?
The chances that your child will sneak gluten (or even want it, for that matter) are inversely proportional to the clarity of this association between gluten and not feeling well.
Chances are your child is trying really hard to stick to the diet. Make sure she doesn’t feel like she’s done something wrong by eating the wrong food. Point out that everyone makes mistakes and that gluten can be hidden in all sorts of things. It just means you have to be super careful in the future.
You can’t predict how your child will respond when you first start talking to her about her new gluten-free lifestyle. Her reaction depends on how you present the diet, her age, maturity, level of understanding, ability to express her feelings and, of course, her personality.
You probably realise that if she shows anger, hostility or other ‘negative’ emotions, you should be soothing, understanding and supportive — those parental responses are natural.
Don’t think, though, that the initial ‘upset’ reaction is going to stick. It’s most likely a fleeting response that evolves into a more positive outlook over time. Continue to remind her of the benefits she can look forward to now that her body is getting healthier because she’s eating gluten-free foods.
Be prepared for little or no response. Appearing to be indifferent or apathetic isn’t unusual for kids. Don’t read too deeply and assume this reaction is a ‘cover’ for deep, disturbing thoughts — chances are, it’s an honest response to a somewhat confusing issue or a reaction to something that truly doesn’t seem to matter much at the time.
Your child needs to talk to other people — both adults and other kids — about his gluten-free lifestyle. He’ll be doing it for the rest of his life and there’s no time to start like the present. Of course, the way he communicates the message depends on his age, personality, who he’s talking to and how comfortable he is talking about this type of thing.
Teach your child a phrase to use, even if she’s too young to know what it means. Use something comprehensive that she can repeat to adults. For instance, ‘I can’t eat gluten. So I can’t eat anything that comes from wheat, rye, barley, malt and oats.’ This tells adults the essence of what they need to know.
Maybe that one’s too cumbersome; but if your child can handle it, go with it. If not, find one that’s more age-appropriate or one that suits your child’s personality. The idea behind the memorised ‘sound bite’ is that it covers a lot of bases with a relatively easy couple of sentences.
Of course, the more children can add, the better. If your child can explain to people exactly what she can and can’t eat, that’s terrific — and if she can add the fact that gluten makes her feel bad, that’s better yet. Before long, you and your child will work out what works best for her.
Teach your child to be open and conversant about being gluten-free. You want him to be confident to speak up about his needs, but understand that he can’t expect everyone to accommodate his diet at all times. Informing people (especially those who may be involved in feeding him) is important and you can do this in a friendly, informative manner.
No matter how well your child communicates the fact that he can’t eat gluten, some people will, usually with the best of intentions, offer him something with gluten. This can be really confusing to your child, especially if the sweet-slipping-someone happens to be a loved one who folds a biscuit into your child’s hand and says with a conspiratorial just-between-you-and-me wink, ‘Don’t tell Mummy and Daddy’. Help! What’s a gluten-free kid to do?
Explain to your child how and why this type of a situation may come up and, most importantly, how to handle it. Sometimes saying ‘No thanks’ or ‘Thank you, but I can’t eat that’ is easy for a child. Other times, it’s easier and more conciliatory just to accept the treat and not eat it.
Many people assume that because one child is gluten-free, the entire family should adopt the lifestyle. After all, wouldn’t it be cruel to be feasting on doughnuts while your gluten-free child is choking down rice cakes? Yes, it would.
But having the entire family go gluten-free isn’t always the right answer, either. You really have to weigh both sides of the issue and consider the practical and psychological issues. This section helps you weigh the pros and cons.
Here are some advantages if everyone goes gluten-free:
All that sounds good, doesn’t it? At first glance, that would be the simplest way to go. But you have many ‘cons’ to consider, and may decide the disadvantages of having the entire family go gluten-free outweigh the advantages.
Here are a few of the disadvantages of everyone going gluten-free:
Sometimes a compromise is the best solution. See whether these ideas work for your family:
From an early age your child needs to make decisions about what she can and can’t eat and how important it is not to cheat, no matter how tempted she is.
From a psychological standpoint, it’s important that the gluten-free diet doesn’t take front and centre stage in your child’s life — and that means she should be thinking of other things most of the time. But when it comes time to eat, she needs to realise how important it is that she makes good choices. Food is something she needs to pay close attention to.
When we suggest giving your child control, we’re not suggesting you let her make all the decisions by herself — like everything else in life, children need a little guidance, especially at first. You can do many things together to help kids make good food choices:
Letting g-g-g-g-go is one of the hardest things parents ever do; yet it’s your job as a parent. Every day you prepare your children for life so you can eventually set them free. If you do your job well, you can rest easy knowing they have all the tools they need to make decisions that lead to safe, happy, healthy lives. You don’t have much of a problem giving them control of certain things — going to the toilet by themselves, washing their hands and using the DVD player. But when it comes to choosing foods — and those foods could make them really sick — trusting that they’ll make safe choices is hard!
You’ll know when the time is right and when you can actually relax knowing they’re making safe food choices. It’ll most likely be way before you expect it and maybe way before you’re ready.
Living life in a bubble is for helium molecules. Your child’s life shouldn’t be restricted just because he’s on a restricted diet! Really, getting out and about with gluten-free kids isn’t much different from the way adults do it: You still follow the ‘Golden Rules of Going Out’ (refer to Chapter 16); tips for travel are the same and ordering at restaurants isn’t much different, except you may be ordering from a kids’ menu instead of an adult one. We do have a few suggestions that are specific to getting out with gluten-free kids:
Leaving your kids with other people is scary enough, even when they don’t have dietary limitations that can make them sick. But trusting someone else to safely feed your gluten-free child? Help!
The most important thing you can do to ensure your children will be in good hands from a gluten-free standpoint is to educate the people caring for them.
You may want to look at Chapter 16 to find out how to talk with others and how to assess whether they really ‘get it’. If you suspect they don’t fully understand the diet or its importance, work harder to make sure they do or find a new carer. Make a clear distinction between coeliac disease and the allergic conditions that cause a severe, sometimes life-threatening reaction (anaphylactic shock). While you want others to take the situation seriously, you also want to avoid them becoming paranoid about ever having your child in their house.
Because they’re away at school for several hours at a time, day after day, sending gluten-free children to school is one of the biggest challenges you face. Here are some tips:
Feeding time at the zoo has nothing on mealtimes at school camp: Put 40 or 60 or 120 over-excited kids in a large dining hall, ask them to queue up with their plates as kitchen staff dollop out meat and veggies, or get monitors to serve the food. Staff have little time or scope to cater for individual choice, and shy or uncertain coeliac kids find it really hard to speak up to get what they need. Many teenagers would sooner have a tooth pulled than draw attention to themselves, or stand out in any way. A frazzled teacher who isn’t aware of the need for gluten-free meals may order a child back in line, or dismiss them with a dogmatic, ‘Not now, Maya. I’ll talk to you later’.
You’re getting the idea? School camps are tricky and careful preparation is essential. Finding out as much as possible about the camp prior to your child attending can give you and your child peace of mind. Make an appointment before the camp with your child’s teacher, to explain the seriousness of the situation. Ask the teacher who will be responsible for overseeing your child’s special diet and who she should talk to at mealtimes to find out what has been prepared for her — will it be a member of the kitchen staff, a teacher or a parent assistant? Go through the procedure with your child so she knows what has been arranged. Make one of the teachers or a parent assistant your ally in this, so someone is looking out for your child during the feeding frenzy.
Ask the teacher or camp organiser to find out from the camping venue what’s on the menu, or make your own enquiries. When you know what’s available in the way of gluten-free bread, pasta, pizza bases, biscuits and so on, you can then let the school know what extras you will provide. Pack a few gluten-free items for the teacher to hold onto — for example, a pack of gluten-free biscuits, loaf of bread and a box of cereal — and make sure your child has plenty of her favourite snacks, so she won’t feel deprived if she has to miss out on other things.
You can’t push a teen any more than you can push a rope. By the time your kids are teenagers, the best you can do is hope that you’ve laid a good foundation and are still able to guide them in the direction you think they should go.
If your teen is newly diagnosed, the teen years can be a scary time for him. He’s already going through many changes, and adopting a gluten-free lifestyle is one change that he may think will cast him way beyond being different and into the realm of being downright freaky.
If your teen has been diagnosed, even if that diagnosis happened years ago, you may see her evolve from one who was very accepting and easygoing about the diet into one who fights it a little and may even cheat from time to time.
All these responses are normal, if any definition of the word ‘normal’ applies to teenagers. You should handle these reactions with patience, understanding and communication on both sides.
Now you see ’em, now you don’t; sometimes kids’ symptoms seem to do a disappearing act during their teenage years. For some, the symptoms do go away — at least temporarily. At this point, they may be tempted to devour a pizza. They think that because they don’t feel symptoms, they’ll be okay.
Not true! In fact, the whole thing is just an illusion. Although your kids may not feel the effects, the gluten can still cause damage.
For others, the symptoms evolve into those features more characteristic in adults — headaches, fatigue and depression, for example. These teens, too, sometimes think their symptoms have disappeared, because what they used to associate with eating gluten — diarrhoea, for instance — is no longer their typical reaction. They may not realise the headaches they get, or other symptoms, are also signs of their gluten intolerance.
We cover the topic of cheating and being tempted to cheat on the gluten-free diet in Chapter 18. But teens are a different animal and they sometimes cheat or want to cheat for different reasons. By the time kids become teens, parents really can’t stop them from putting something in their mouths.
Teens may want to eat gluten because of:
So what do you do about your tempted teen? The best you can do is talk calmly. Remind her that even if she doesn’t feel the effects of gluten, it’s still doing tremendous harm to her body.
One of the hardest things for teens to handle, especially if they’re new to the gluten-free lifestyle, is moving out. Many young people move into share-houses or flats where life is so exciting that food becomes something that is only thought about when hunger pangs start to bite. The fridge in your average share-house is usually inhabited by little more than dangerously out-dated milk, pizza crusts and unidentifiable blobs of furry goo in various stages of decomposition. Even if parents have prepared their teen with basic cooking skills and the need to keep a regular stock of healthy supplies, things can go awry as ravenous flatmates raid the stash or devour leftovers before you can say, ‘Noooooooooooooo!’
Talk to your teenager about ways of educating flatmates about gluten and why it’s important not to eat someone else’s gluten-free supplies. If flatmates are supportive, many of the shared meals could be made gluten-free. Often students struggle financially and the added cost of gluten-free products puts extra strain on an already stretched budget. We’ve included some easy-to-prepare recipes in Part III that will help young cooks with small budgets and little time for the kitchen.
If your child lives on campus and has to eat in dining halls, encourage him to contact the dining services office or the food service manager to discuss his dietary needs. He may need to provide his own gluten-free soy sauce, for instance, or otherwise modify what’s served. In colleges where students do their own catering, lock-up cupboards and fridges are provided.
Food packs are sometimes the next-best thing to being there. Think about sending some gluten-free goodies in time for exams, or just to say, ‘I love you’.
3.141.197.251