From your child's first months, when you may feel over-protective and anxious; through their infant years, when they will crave and hunt down sweets; to their school years, during which time your child will take over responsibility for managing their diabetes, you should all work together to understand and 'normalise' their condition.
And if you are feeling overwhelmed, help is at hand.
The following guide will help you bring some stability to these changing times.
The psychological effect of diabetes in the family will be different at different ages and depends very much on the child's development and basic needs for that age.
Naturally, parents will often feel unsure about how to handle specific situations, and may on occasion need expert help to address particular issues. Sometimes the help of a child psychologist will be appropriate. It is a good idea to let all children and adolescents see the psychologist at least once during the early months after diagnosis. That way, if parents feel psychological help is necessary at a later date, the initial contact will already have been made.
Marianne Helgesson who is a psychologist at the Department of Paediatrics in Linköping, Sweden, lectures on psychology and diabetes in individuals at different ages. She teaches the following:
It is not always easy to accommodate three people in a marriage. The first crack between spouses often appears when the first child is born. Discussions and disputes begin to focus on how to organize time, something that may not have been an issue before.
It will become a question of balance as to how much time and care one should devote to the child, to one's partner and to oneself. The parents must come to an agreement on how work at home should be divided, and whether one of them or both will be able to pursue a career.
Child raising is for the most part a repetition of how you were brought up yourself, since this is the only model you are familiar with. But usually there are two parents, both with their own upbringing behind them. Conflicts are inevitable and the result will be a combination of both parents' previous experiences.
However, if the child has a chronic illness, there is can be a lack of role models and this will make parents feel insecure.
Infants (0-1.5 years)
This period is characterized by a so called symbiosis, at first between mother and child. Later on the father is also included. During this time it is very important that the parent subordinates his or her own needs in favour of the child's needs. The child, after all, is not in any position to give priority to the parent's needs. When the child is able to move around unaided, after about 1 year of age, he or she will begin to explore the world.
Issues arising from diabetes
Diabetes at this age will inevitably bring stress into the family. If parents find it difficult to handle this without feeling tense and uncertain towards the child, they will also find it difficult to communicate security and confidence to the child. Security and confidence have a close relationship with the issue of food and diabetes. Young children do not understand why they should eat if they are not hungry and vice versa, so there is considerable risk of feeding problems at this age. Multiple injections or pump therapy can help to address such problems. Children need to feel their parents display trust and confidence in various situations, but clearly this may be difficult when a child has diabetes.
Over-protectiveness may lead to a child anxiously staying by the parent's side instead of looking outwards to the world beyond. Young children cannot understand injections and blood testing, or the pain, anger and anxiety that go with them. We cannot explain to them why they must be hurt in this way. Usually, the best approach is to get the injection out of the way as quickly as possible, and then comfort the child. Injection aids may be very helpful for this age group.
Toddlers (1.5-3 years)
Toddlers start to explore the world more actively. Around the age of 2, the child will often take a step "backwards", becoming more attached to the mother again. This is quite normal and is not due to inappropriate parental attitudes towards the child. The "obstinate age" (the age of practising one's own free will) begins between 2 and 3 years of age. Children will first test the parents' and then their own ability to set limits. All children will show quite a lot of anger and frustration during this time. They must experience their own limitations which can be unpleasant. It is important that parents engage in such "battles of will" as it is through these that children learn how to stand up for something, to compromise and to give in.
Issues arising from diabetes
It can be difficult to know whether or not a child's bad temper is caused by a low or high blood glucose level. Should the child be given something to eat every time he or she is angry? It may be difficult to take a blood test every time. A child with diabetes will have more limitations than other children due to injections, mealtimes and monitoring. There is always a tendency with a chronic illness that parents will want to compensate for the restrictions caused by the illness by letting the child decide about everything else. In doing this the parent shows pity for the child and becomes less effective in setting limits in other areas. The child then becomes insecure and disorderly, continuously testing the limits in order to provoke a parental reaction. However, if the parents do not have enough strength to deal with such aggressiveness the child may turn inwards, becoming passive and insecure, with a low feeling of self-confidence. Parents, too, need understanding, as this period may be very challenging. But they also need encouragement because a child with diabetes needs a normal upbringing just as much as any other child. A fear of strange environments (such as the hospital) can be even greater than the fear of injections. Some children of this age will become very anxious if they feel they are being restrained. Try to give injections and take blood tests in as secure an environment as possible.
Pre-school children (3-6 years)
The child in this age group begins to understand more about the world and will be conscious of the fact that his or her body can experience both desire and pain. The child will role play and have a very rich imaginative life. During this period the differentiation of sex roles takes place. The child wants to imitate the parent of the same sex and falls in love, often wanting to marry the parent of the opposite sex. A child of 4-5 years will be "the king of the universe", knowing and being able to do everything, especially knowing what he or she wants and does not want. Children feel powerful when they discover how to control others. A 6-year-old is usually more willing to fit in with what the parent wants. Children begin to develop a conscience, thinking about crime and punishment in a "primitive way" in terms of "an eye for an eye and a tooth for a tooth". They become aware of the boundaries of the body. Plasters have a magic ability to restore and heal.
Issues arising from diabetes
Children in this age group may believe they have developed diabetes as a punishment for doing something wrong, or that a blood glucose test is a punishment. This must be brought up and into the open with the child even if he or she does not ask about it. After all, even adults ask themselves "What have I done to deserve this?" when something unpleasant or unfortunate occurs. We all try to find a logical connection between things that have happened. Children can be limited in the amount of freedom they have on account of the parents' fear of hypoglycaemia. It may be difficult to give insulin and take tests when children refuse to cooperate. They will have definite views on what they do and don't want to eat. It may be very difficult to know in advance how much of the meal a child will eat. Try letting him or her decide about some other details of daily life instead. Multiple injections or an insulin pump give children more freedom over what they eat and how much. Don't tell a child in this age group too far in advance about injections, testing or other unpleasant things. They can easily build this up to unrealistic proportions in their imagination. In a family where the children are of different sexes, diabetes may be linked to gender in the child's mind. For example, a girl might believe it would be better to be a boy since her brother does not have diabetes (or vice versa).
Primary school children
Starting school is stressful for all children, and many will find it difficult to adjust in the beginning. Primary school children are occupied with understanding and exploring the world. They like to take things apart and understand how everything works. They will also be interested in understanding how their diabetes works. Friends become increasingly important and it is important to do the same sort of things as they do. Children in this age group like to keep track of how long an activity takes, such as running an errand. They are interested when they know something is going to happen but really cannot yet understand how long it will take. They expand their relationships from parents to other adults, including teachers and other caregivers at school. During the primary school years, children learn how to master impulse control and to behave within acceptable limits and guidelines.
Issues arising from diabetes
The fear of the unknown is still there even if the child seems interested in exploring. It is important to adapt the information to the age of the child. "Normalize", i.e. tell the child that it is quite normal and fully understandable ("Other children would feel the same way") to feel the way he or she does in different situations, such as taking an injection or a blood test. Keeping track of time will often help, for instance when administering an injection. Food at school does not taste the same as it does at home, and sometimes the child will not eat at all. It is important to find someone at school who is able and willing to help the child take insulin at lunchtime. At first you may feel very insecure - what happens if my child becomes hypoglycaemic at school? Try to ensure that one parent is always contactable by telephone and can come to school if necessary, especially early on. It is important that school teachers know how to deal with hypoglycaemia. They will often take the child's illness more seriously after seeing a hypoglycaemic episode.
This part of life is referred to as the latency phase in psychological terms. Children are usually very receptive towards all types of education, including diabetes. They want to expand their views but at the same time they have learned to stay within the limits their parents have set. During this time a social role develops: "Can I join in?", "Will I be accepted?" There is also competition with peers as to "who is the greatest, cleverest and most beautiful". Peers become increasingly important. Children will benefit from meeting others with diabetes in the same age group with whom they can identify, for instance at a diabetes education camp or holiday. Encouragement is important at this age as children need confirmation that they have done things correctly.
Issues arising from diabetes
All children wonder about their role in life during this period. At the age of 10 or 11, a child with a chronic disease will usually start to reflect upon and react to their illness in a new way. "Why did this happen to me?" is a common question. There will often be a time when the child experiences everything that has to do with diabetes as difficult and strenuous. For the first time the child understands that having diabetes means having it for the rest of his or her life. It will take some time to accept this. During this time it is important to talk openly and often to the child about what diabetes entails, as this will help him or her to move towards acceptance. Show that you as a parent also feel concerned, and confirm that life with diabetes is both difficult and unfair. Children usually pass through this phase after a while but some may, on occasion, need help from a psychologist or counsellor. As children in this age group are very receptive to learning without defying their parents' authority, it is important to make diabetes management a natural part of daily life during the years leading up to puberty. Children who are confident about managing their diabetes before the onset of puberty will be less likely to feel their diabetes prevents their growth and independence.
During puberty, the teenager should begin the development of an adult identity, having independence and an equal standing with other adults. This increasing independence is fragile, which is why teenagers need to defend their integrity so strongly. In a way, earlier stages of development are repeated. Teenagers often vacillate between behaving like children and being grown up. It is important to realize that they have the chance to "revisit" areas that have not been completed during earlier phases of development. Many parents look upon the teenage period with horror, but if you try instead to see puberty as a "final run through" of the childhood and adolescent years before embarking upon adulthood, your view may be more positive.
Friends are very important, and as it is only natural to want to be able to do the same things as everyone else. Teenagers like to go out in the evening to have a hamburger or pizza with their friends, instead of staying at home to eat the usual evening meal. It is important that young people are given both the freedom and responsibility to experiment with insulin doses on such occasions. Teenagers are very interested in their own body, especially during early adolescence They want to be well informed about the way diabetes affects their body. At the same time they are often shy about exposing their body and, in this sense, are not at all as open-minded as might be expected. We encourage older teenagers to come to some of the visits without their mother or father. An alternative is to let the parent enter the room at the end of the consultation and then only raise issues that the teenager has consented to. It is important for teenagers to understand that the professional confidentiality also applies to parents. If a young person wants to raise personal issues, he or she should be able to do so without fear of the information being passed on. Teenagers often bring a buddy or a boyfriend/girlfriend to the visits. They appreciate someone's support but feel too old to bring their mother or father.
It may be a difficult for parents to know just how much involvement with the teenager's diabetes is appropriate. It can be difficult to remain sufficiently well informed as you are less and less involved with your child's diabetes and clinic visits. Most teenagers prefer to manage without their parents' input but at the same time want them to be informed. One 18-year-old girl said: "Of course I want them to know how my diabetes is managed - who else can jump in and help me if I fail?"
When should children take over responsibility for diabetes control?
During the early school years, all children expand their skills across a wide range of areas: athletic, artistic, academic and self-control. As a natural part of this generalized increased ability in many fields, children will also gradually increase their participation in, and responsibility for, various diabetes-related tasks. However, current research indicates that parents should continue to take part in diabetes tasks throughout these years. It is helpful if the expectation for continued parental involvement throughout the primary school years and into adolescence is introduced to children and families by the diabetes team as early as possible. Don't hand over responsibility too early!