education

A helping guide to parents in childhood and adolescence

Having your child diagnosed as diabetic is almost always a shock for parents. You may already know that diabetes is a chronic disease with no cure likely in the foreseeable future. Your child's future suddenly seems unpredictable, the therapy stressful and you may worry about short and long-term complications. You may not yet be able to imagine how it might be possible for your child to feel happy and satisfied with his or her life. The feelings associated with these thoughts are unpleasant, but they are a perfectly normal emotional response. If we do not know how to cope with an unknown situation, our anxiety increases. If your child has special problems, it is going to be stressful for the whole family, especially initially, as you learn to adjust. But you can learn to adjust, you can learn together how to live with what at first seems threatening, without being sad or anxious. If, however, you feel that you are unable to resolve any family conflicts about diabetes on your own, or worry that you might be making them worse, don't hesitate to enlist the help of a family counselor.

Sometimes the diagnosis "diabetes" can become a starting point for a different kind of family life, one in which the whole family interacts in a more conscious way. If you are able to organize good support, it can be a rewarding task caring for a child with a chronic disease, particularly when you can share in the progress he or she will make. One of the aims you had for your child anyway will stay the same: showing your child that life can be fun when you set yourself goals, overcome obstacles and enjoy your successes.
If you get to know other parents who also have a child with diabetes, you will soon realize that there are many different ways in which you and your child can overcome any difficulties you may have. You can learn to adapt to the diabetes, so that it becomes a natural part of your family life and your child can essentially grow up and develop like his brothers and sisters or like other children of his age group. Children with diabetes have to keep to certain guidelines and it is possible for their peers to learn to respect these as a natural part of being with the child. If however, the child is pushed into a special role because of his parents' anxieties, his normal child development could be threatened. He or she should be encouraged to participate in normal, age-appropriate children's activities, whilst at the same time observing certain precautionary measures. Modern diabetes therapy allows for adjustments so that your child can take part in activities which used to be forbidden: activities such as sport, going out with friends and eating and drinking almost like other children.


Some General Principles

Important though metabolic control may be, it should never be more important than the child himself. If diabetes becomes the only focus of the interaction between parent and child, the child will feel he or she is not being seen as he really is, with his strengths and weaknesses. This type of interaction will make it difficult for a child to develop a sense of who he is and who he would like to become. Having spoken to some adults who have had diabetes since childhood, they recall having sometimes felt that all that mattered to their parents was how their blood sugar was doing.

There is an old and widely accepted principle in developmental psychology: development will be promoted best, if those who educate children always aim for the "zone of next-expected development". This means presenting the child with tasks which he or she cannot quite manage at the moment, but which you would expect them to be able to cope with in the near future. Thus, if you know that the majority of children with diabetes start self-injecting by the age of nine, you would want to start talking to your child by the age of seven to eight about self-injections, letting him try it out and being aware of the moment when he starts to want to do it himself. If there are relapses, when something that your child has been managing for ages, suddenly seems impossible to him, try to see this as part of normal development. Everybody has heard of toddlers being toilet-trained, who suddenly can't be bothered to find a toilet in time. Sometimes your child will be telling you that he needs a break, that the demands on him are too much at the moment, whether these are the demands of the therapy or those of his everyday life, eg. after a change of school. Sometimes he will be playing you up and testing the boundaries, as any healthy child would do. Which of these is the case is always difficult to judge for any parent, but if you listen to your child and get to know how he normally reacts, then you can usually make a pretty good guess and act accordingly. Just like the parents of healthy children, parents of a child with diabetes are justified in expecting their child to cope with increasingly difficult, but age-appropriate tasks.

The way your child deals with the demands of his illness and its therapy will change according to his age and stage of development. Each age sets particular tasks for the child that can be affected more or less by their experience of the diabetes therapy. In the course of their lives, children find different ways of dealing with their therapy, and whilst some of these adaptive tasks will be resolved in an individual way according to personal preference, some will be resolved by all children in the same way at the same stage of development. While toddlers and pre-school children may often forget about the diabetes, as their attention is easily distracted, an adolescent might experience his diabetes so intensely that he becomes quite depressed. Diabetes can pose new problems at each age and stage of development. Even if a child has lived well with his diabetes for years, there might come a time when it causes a crisis and his or her relationship to the illness and its therapy has to be thought through again.

It is important that the child's siblings don't suffer as a result of the diabetes. They should never be forced to comply with the restrictions of therapy to make it "fair" for the diabetic child. This would only lead to resentment. They will find their own way of dealing with the diabetes and supporting their brother or sister, as long as they are not constantly told to do so. They should only ever have limited responsibility. It is helpful if you pick an area where they are most likely to feel competent and safe, and where they are able to experience some measure of success.


Diabetes and Child Development



Pre-school

Very small children cannot really understand their diabetes. They still have a very simplified picture of illness, one in which there is always eventually a cure. Their understanding of the world and of cause and effect is, as yet, magical. They are unable to grasp the meaning of a chronic disease as they have no clear idea of the future. The facts about diabetes and its therapy have to be explained very simply. Concentrate on the practical aspects of the therapy as the child will experience it now. Therapy should be as simple as possible so that the child needn't be supervised permanently. A conventional insulin therapy with clear rules about food and schedules is appropriate at this age. Any child at this stage of development needs clear guidelines from his parents. It is of prime importance to avoid the extreme risks of severe hypoglycaemia with loss of consciousness and severe hyperglycaemia with ketoacidosis. This must be the main goal of therapy at this age.
Parents have to explain to the child again and again, why certain things have to be done for the therapy, and they have to do this in a non-threatening way. Therapy should become a natural and usual part of the day. The essential bits of the therapy cannot be the subject of discussion and negotiation. You wouldn't negotiate with a child of this age about crossing a busy road on its own and you can't bargain about insulin. It can ease the situation for the child, if you can integrate parts of his therapy into his play, e.g. distracting him while he is being injected. At this stage you, as a parent, will be carrying out all of the therapy yourself. However, your child could try out small parts of the therapy himself, so long as he is supervised. Try to arrange for him to do things he is likely to be successful at and never blame him if he makes a mistake, even if it makes you anxious. Thus the child can grow into his therapy as he would learn to dress himself, by gradually taking over more and more of an active role.


Age 6 to 10

Children of primary school age usually get used to their therapy quite quickly. They are keen to learn new knowledge and skills and are interested in how things work. They now have a better understanding of what diabetes means and how therapy works. Diabetes therapy, in which the child can now take a more active role, becomes a technical ability of which the child is often proud. If there are therapeutic alternatives, these can be used to teach your child how to decide on his own. This way therapy can gradually be individualized. Children sometimes like to show others how they care for their diabetes. At this age they have quite a rational attitude towards the diabetes. They do what they have to do to get back to their play as soon as possible. Parents often suffer more with the diabetes than their child: they find it difficult to believe that their child deals with the therapy day in day out without showing signs of distress.
This isn't to say that children won't occasionally be sad or angry at their diabetes, but the feeling usually passes quite quickly. They may also sometimes forget something quite important and have to be reminded. If you listen to your child and can allow him to express these feelings, you may be surprised how quickly your child cheers up (probably well before you!) and goes back to what he was doing. If the problem continues for a sustained period of time and you feel you're not making headway, try not to aggravate the problem by getting the whole family involved in a tug-of-war, think about getting help from your doctor or a psychologist.


Pre-puberty and Puberty

Now the diabetes business gets a bit harder. Teenagers are notorious for taking everything very seriously, particularly themselves. They also ricochet between an extreme drive towards independence and an anxious, almost babyish dependency.
Teenagers set themselves a lot of new and difficult tasks:
  • they are critical of themselves and judge their own strengths and weaknesses through the eyes of their peers. They no longer have a stable sense of self-esteem and have to work at feeling OK with themselves
  • they have to develop their own opinion about behavioral conventions and fashions, and about generally accepted ideas
  • they have to find a role in their peer group
  • they attempt their first steps towards separation from their parents
  • they start to have romantic and sexual relationships.

These tasks can often lead to uncertainty and moodiness. The stresses of diabetes and its therapy are accentuated. They now become tied up with their sense of self-worth. Their body and social image is in danger. Adolescents often want to be secretive about their diabetes and are unwilling to talk about it. The risk of long-term complications , which younger children don't really understand, suddenly takes on a new meaning. At this point it is very important - and unfortunately also very difficult- that parents and teachers

  1. listen, when a child has problems with his or her diabetes, and
  2. offer a healthy amount of support - not too much and not too little.

For teenagers with diabetes it is of central importance that they are able to take part in all the activities of their peer group, including those that involve risk and adventure. They will spend evenings in discos, experiment (unfortunately) with tobacco, alcohol and perhaps even drugs. They are going to need a flexible insulin strategy (e.g. intensive insulin therapy or, if they are keen and reliable, an insulin pump). Unrealistic hopes of steady metabolic control during the turbulent teenage years will more than likely be an unnecessary cause of disappointment and conflict, as no therapy can keep up with the many changes in daily routine, attitude and level of activity that being a teenager demands.

Adolescents are highly sensitive to pressure or force. Rules should now be restricted to the essentials of therapy, the things that are necessary for survival, e.g. they must self-inject, but recording in the diary could be negotiable. There is no point forcing a teenager to keep a diary. If they want to get out of it they will and it could mean you spending hours puzzling through what is actually a list of random numbers. Don't get too worked up about single blood glucose readings - concentrate on how the HbA1c's doing. This can reduce the number of family conflicts and allow you all to concentrate on other important things, without neglecting the diabetes. Teenagers often don't like their parents to praise them. They want to be treated as equals, where their wishes and needs are taken seriously in a non-judgmental way.

Adolescents have to find their own way to live with their diabetes. According to their personalities they will be rather conscientious or perhaps rather careless. Both of these have advantages and disadvantages. Try to respect the path your child is choosing at the moment and to support him in his attempts to create a manageable relationship with his illness. This may sometimes leave you feeling anxious, but try not too worry too much. It is important for adolescents to take risks and test limits, even with diabetes.


How to avoid difficulties



Try to accept your child as he or she is, with all his or her strengths and weaknesses, and not put too much emphasis on the diabetes, in spite of your care.
No child can ever be protected from all risk and you may even run the greater risk by overprotecting him. The overprotected child cannot learn to take responsibility for himself. He may rely on you too much for too long and subsequently be unable to find a suitable personal style of therapy when he leaves home and your constant care. As a basic principle, it's a good idea to show your child that he can do what other children do, so long as he respects certain rules of therapy. This way he will be focussing on what he can do and not on what he can't. Organize activities so that your child realizes that there are no restrictions on the important things in his life. At the same time start to build up a daily self-help program, with the child gaining increased confidence in his skills. Try to make therapy as clear and simple as possible, but allow for little digressions occasionally as the child gets older. This way you can teach him which lapses are relatively unimportant and which may have grave consequences.
It's a bit like teaching your child to brush his teeth, which for most small children is a boring, pointless job. They don't at first understand tooth decay and fillings, and it takes them away from what they want to do. It's also something you don't negotiate about, although it's not as acute a threat as not injecting. But they do it, day after day after day. It doesn't usually get more interesting, but it becomes part of their life and they eventually start to feel uncomfortable if they don't do it.
Above all try to listen to what your child is telling you about his diabetes, particularly when he has problems and is angry or sad about the daily restrictions. These are normal feelings and are a psychologically healthy reaction to his situation. He needs comforting. Small children can be easily distracted. The older the child, the more problematic are attempts to suppress or dilute his strong, negative feelings. Your child will calm down of his own accord, if you listen to him and show him some sympathetic understanding. Don't blame your child for high blood sugar readings. Use them as a puzzle that you can both solve together.

Let your child take part in as many activities as possible. If something is out of the question, explain to him why this is so. Look for compromises. Get your child involved whenever you inform people about his diabetes (school, sports clubs). Otherwise he may feel that you have gone behind his back. Also he will be the one to live with the consequences of the discussion. Like all children, it is important for the child with diabetes to be able to pursue his own interests with regard to school and further training. Don't put him under any unnecessary restrictions because of his diabetes. Turn the occasional blind eye if your child sometimes uses his diabetes as a way of getting out of something, or if he' s a little flexible with the truth about his illness. With the constant demands of his therapy, it's understandable that he will seek a let-out occasionally.

It can be helpful to get to know other parents of diabetic children, particularly at the beginning, when you feel unsure of yourself. You may be able to find people willing to help through your doctor or clinic. Perhaps there is a self-help group you could contact. Groups are good for finding new and better solutions to problems you may have and you will find people there who are willing to listen and who understand what it's like when nothing seems to go right. It can be helpful to swap ideas. Even at the beginning of your dealings with diabetes, you might find you have solved a problem in a creative way, that another parent hasn't thought of yet.

Younger children up to the age of 10, like to do things in groups with other families or in groups of diabetic children: they feel safe, they learn a lot from the others and can develop a sense of their own identity as someone who has diabetes, who is active and who knows what they want from life. Older children prefer just to fit in with their peer group, without the diabetes being an issue. This change is understandable and necessary at this stage of your child's development. Make sure he or she is able to cope with enough of his therapy himself by this time, so that this is possible. It is sometimes difficult to allow your child to try out new things, some of which may involve an element of risk. Try to trust him to develop his own solutions at this age. If you watch how he interacts with his peers and how he copes with other areas of responsibility, you will get a feeling for how much he can manage on his own. Make sure he knows how to avoid metabolic extremes and how to get help in emergencies.

Try to find a doctor your child likes. If your child is afraid of a particular doctor it isn't going to help him to adjust to his diabetes. The doctor and his team are the ones who will teach him about his therapy and give him the necessary skills. You need a sympathetic pediatrician, too, one who will give you the information you need without putting you under pressure, one who makes you feel hopeful and confident, one who can give you practical tips on how to make your daily life with diabetes a bit easier. A good doctor can be someone your child can talk to about his therapy and with whom he can set goals for himself and discuss difficulties. There may be times, particularly during adolescence, when your child finds it easier to talk to someone outside the family.

You can achieve most of the things you wish for the child with diabetes: a healthy psychological development with a healthy sense of self-esteem and normal friendships; on the whole good but not perfect blood sugar, and a normal education. The best therapy will always be a compromise between perfect metabolic control and your child's needs.

What is most important:
  • Above all try to encourage a healthy psychological development.
  • Stick to a few, clear rules for therapy, but allow for the odd exception, too.
  • Help your child to avoid metabolic extremes.
  • Start helping your child to develop his own therapy early on and as gradually as possible.
  • Share the stress of diabetes within the family. Try to support each other.
  • Talk about your diabetes worries with your child too, but not too often.
  • A single high blood sugar is not a catastrophe, but an opportunity for you both to learn.
Dr. Axel Hirsch
Dept of Diabetes and Metabolic Disorders
Bethanien Hospital – Hamburg – Germany

Susan Woods-Büggeln
Diabetes Centre
Christian-Albrechts-University – Kiel – Germay
education > living with diabetes