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Emotional Adjustment for Parents |
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Any chronic condition will come with its own set of emotional challenges. Celiac disease presents several particularly difficult issues, since much of our society revolves around the sharing of food. For a child, peer acceptance is often based on the ability to fit or blend in with the crowd. It is important for parents to help their children view their condition with a healthy and balanced perspective.
It is valuable for children to understand that everyone can potentially be allergic or intolerant to something for instance like nuts, lactose, protein, strawberries, etc. On the other hand, other allergies can develop due to the environment such as plants and trees, dogs and cats or even dust. Every child's intolerance to gluten is just a part of who they are and how their body responds.
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A child's ability to cope with celiac disease is effected by their parent's attitude and approach to life after the diagnosis. In many ways this is what the industry refers to as "the Cadillac of Diseases." That's because children can live a healthy, longer life simply by removing certain items from their diet. The toughest challenge is learning how to adjust to a gluten-free diet.
If one were to apply the traditional rule for dieters in a market to shop around -- keeping wheat, rye, oats, and barley out of gluten-free diet -- it will be relieving to realize that the circumference of the market- all the fresh meats, fish, poultry, fruits and vegetables are still safe! However, it's in the inside aisles where wheat products and gluten containing ingredients are found.
Celiac children do not need medications, needles, or transfusions to live a long and healthy life. Children do need their parents to be detectives and cast out the offending grains from their existence. It can be done and it gets easier every day.
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By the time you are reading this you have already been on a long and difficult journey. A quest for your child's health may have been laden with strange symptoms, misdiagnosis or the fear that a dire problem might have been the cause of our child's illness. You will stand next to countless other parents who breathe a sigh of relief to finally know what was causing their child to be ill, but on the other hand find themselves breathless at the concept of such an overwhelming and all encompassing diet.
As hard as it may be to believe, in three months you will be well on your way to a new and gluten free lifestyle for your child and in six months you will wonder why you panicked about it to begin with.
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This is not to say it isn't a demanding diet that will require the dedication of your free time to understand the disease and to manage it. You will rediscover the joys of baking and cooking versus heating up and microwaving. You will become an expert at negotiating with the customer service people at companies with products you want to learn about. You will sharpen your salesmanship techniques as you present your wish list of the newest gluten-free products to your local health food store manager.
All this and more will become a part of who you are. You can do this! True, the days of grabbing any box from the freezer section and tossing it on a plate for your child may have come to an end. Don't worry- there are rewards to be enjoyed as well. Family members will be able to eat healthier diets, instead of foods that come out of a box loaded with unhealthy flavorings and preservatives. You will find it fun to bake with your celiac child and others rarely refuse to join or eat the gluten-free cookies or cupcakes.
The gluten-free marketplace has been undergoing an explosion in quality and variety. There are dozens of companies that manufacture gluten-free foods and baking products, and the numbers continue to grow daily. Current research shows that celiac disease is very under-diagnosed in this country, and increases the expansion of a market for gluten-free foods and products.
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You have permission to wallow in your emotions after learning that your child has celiac disease. Self-pity, guilt, denial and any other emotion you find yourself experiencing as a result of your child's diagnosis is understandable. You have just been told that your child has a chronic disease and that they will never grow out of it. Do not feel guilty about the fact that you feel sorry for yourself and the "new world" you find yourself in. It is a new and complicated place and it demands you to cast away the cloak of spontaneity that you wore so casually before the diagnosis. Do not feel guilty that you somehow "gave" celiac disease to your child. It may be a blessing in disguise for your ancestors that had suffered from similar symptoms that no doctor ever fully diagnosed. Perhaps they had been suffering from the effects of undiagnosed celiac disease.
Your child will pick up on your feelings about their diagnosis. Make it one of your main goals to prevent your child from thinking you hate him or her because of the disease. Try to play it down in public environments. The more you keep from discussing it in front of the child, the less isolated they will feel. There is much "behind the scenes" magic you can perform to help their life feel as much like everyone else's.
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Call the parents of your child's friends when they attend a play date or party, and offer to supply gluten-free snacks or treats for everyone. Offer to supply gluten-free candy alternatives for the goody bags or pi?atas. Over the years the parents of your child's good friends will learn what items are safe and offer them on their own. Try not to impose learning the diet on a reluctant parent or the invitations might slow down and that will make your child unhappy.
Be positive, complicated though it may be- it is only a diet.
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Listed below are some helpful and beneficial tips to keep in mind after your child's diagnosis by Lauren Jacobs Komack, LICSW.
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First you mourn in the recognition that your child will not be perfect. This process is different for everyone.
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You begin to recognize that you are completely in charge of how healthy your child will be: by getting all the information you can about the disease and by providing an adequate diet.
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You begin to explain to people what you are going through and what they can do to help you.
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You begin to complain to everyone about what you are going through and how you are not being adequately helped.
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You learn to better communicate your needs, and become a superb negotiator, finding the support you need.
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You start discussions with family and close friends about the need for special food preparation.
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You learn never to assume that the other person knows what they are talking about when it comes to offending ingredients. You have to ask, and ask again
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You learn that no one knows more about celiac disease than you do.
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You learn that if your doctor does not help you, you can find another doctor.
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You learn to tell people what you need, not ask for choices.
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You begin to think about how to teach your child to negotiate in a world of gluten eaters.
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You join a support group to learn everything there is to know about celiac disease amd meet other families in the same situation
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You learn about your child in ways that most parents never have to think about: having conversations about eating in, eating out, cheating, etc.
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You change these conversations over time, based in the new needs of the child as he/she grows and develops his/her own autonomy and individual styles.
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You tell everyone you know every detail about the course of your child's celiac disease until you get tired of it. Then you will know that you can move on.
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