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  • Parenting children with diabetes

    Having your child diagnosed with diabetes takes you to a completely unknown and frightening place. It immediately transforms your relationship with your child – Mummy is suddenly also a nurse; Daddy gives cuddles, but also injections. The joy of parenting is now tinged with constant anxiety. It goes against all your parenting instincts to inflict pain on your child, a child who may too young to understand why these things must be done every few hours, every day, for the rest of their lives.

    This is the stage where you feel the most lost, and you need a clear understanding of your new responsibilities and your child’s needs and capabilities with diabetes at each developmental stage of their life. These must somehow dovetail with the parenting issues and priorities that you expected to face with your child’s normal development in all other areas of their life. As a child psychologist working with families learning to cope with diabetes, I have tried to draw together established wisdom from psychological research, guidelines from specialist diabetes teams and combine it with my own clinical experience to provide a simple parenting ‘toolkit’.

    Dr Gudrun Court, Clinical Psychologist, Starship Children’s Health, Diabetes Team

    Preschool

    Where are they at?

    Developing trusting relationships and bonding with parents, exploring their world, developing a sense of self and belonging.

    What may they be thinking?

    ‘This is my fault; I got diabetes because I was naughty.’

    What should you do?

    • Establish a routine around diabetes care, meals and snack times, so their world seems safe and predictable.
    • From age four they, can prick their own finger and put the sample in the meter, under supervision.
    • You can also start including them in carb counting at this age, but again, this is the caregiver’s responsibility, never the child’s.
    • Adults are responsible for calculating all insulin doses and administering insulin via injection or pump. Consider setting a keypad lock for children using a pump.
    • Parents must record all changes in insulin rates and keep written records of blood sugar levels.
    • Offer simple choices to allow your child to have control during diabetes care (eg–which finger to prick).
    • Plan early for child’s schooling. You may want to meet with your school management three months before your child’s fifth birthday to discuss any issues that may come up when child starts school.
    • Keep consistent rules and guidelines for all children in the household. For example, if your child with diabetes cannot take snacks without talking to you first, then no one can.
    • Reassure the child that this is not their fault. Use short, simple explanations about what diabetes is and is not.
    • Keep communicating with the adults involved in your child’s life, e.g. partner, grandparents, daycare – you’re a team. Don’t bottle things up; ask for help when you need it.
    • Be kind to yourself.

    Primary School and Intermediate

    Where are they at?

    Developing their independence, making friends and fitting in. They don’t want to be different to the other children. Their friends become more and more important. They are learning to take responsibility, manage themselves and their emotions. They’re becoming progressively more independent from the family. They may fear death, failure or not living up to parents and teachers’ expectations and loss of control.

    What may they be thinking?

    ‘I don’t want to be different, doing finger pricks at lunch time, I want to eat when I want. What’s all the fuss about? Why does Mum get so angry if I take an extra biscuit and don’t tell? Why does Dad freak out when my blood sugar is 15? It’s not a big deal.’

    What should you do?

    • Find ways to make diabetes regimen flexible to allow for participation in school and peer activities.
    • Communicate regularly with the school nurse and your diabetes team.
    • Help your child create good habits in regards to eating, exercise, and diabetes management that they will carry with them throughout their lifetime. For example, learning to not over-treat lows, giving insulin before eating, changing needles daily, etc.
    • Children at this age can start getting more involved in diabetes cares, however, research has shown that for safety, success, and long-term health, parents must always maintain involvement and supervision throughout school age and teen years.
    • Establish early on a way of communicating about diabetes, e.g. start a daily 5-minute meeting, around age 10 years, about diabetes.
    • Check meter history daily and continue keeping records, daily.
    • Allow your child to focus on “mastery” of skills and interests outside of theirdiabetes. Diabetes is only a part of who they are, but it does not define who they are.
    • Be attentive to the fact that your child may start to want more privacy regarding their diabetes care.
    • Try to not talk to others about diabetes all the time when your child is nearby. Ask your child for permission first.

    Diabetes Tasks Your Child Can Do

    • Help check own blood sugar but not be responsible for always understanding when.
    • Help count carbohydrates but not be left to count carbs independently at all.
    • When ready, give their own injections but not without supervision.
    • Write down in record book but not be responsible for keeping all records and contacting the diabetes team.
    • Start to learn what their insulin doses are but always be supervised when calculating a dose.
    • Check ketones, with help from caregiver.

    High School

    Where are they at?

    At this age, teenagers are managing body changes and developing a strong sense of self-identity. They are often centred on self, feel untouchable and indestructible and strongly desire privacy and independence. In regards to diabetes, they may fear a loss of control, disfigurement or scars, invasion of privacy and being different from peers.

    Many of the diabetes-related tasks can interfere with the adolescent’s drive for independence and peer acceptance.

    In this age group, there is a struggle for independence from parents and other adults that is often manifested as suboptimal adherence to the diabetes regimen.

    What they may be thinking?

    ‘You are always nagging me; get off my back about my diabetes.’

    What should you do?

    • It is time to renegotiate your and your teen’s role in diabetes management. Research shows that when parental involvement is maintained throughout adolescence, long-term control and health is improved.
    • Maintain a daily 5-minute meeting to discuss diabetes. You should check meter history daily and be careful not to criticize, rather discuss. Blood sugars should not be defined as “good” or “bad”, but rather “in range” or “out of range”.
    • You should remain involved in blood sugar monitoring at home, and also be assisting with counting carbs and calculating insulin doses.
    • Your responsibility is to help plan ahead for activities in regards to diabetes needs.
    • Try to encourage your child to take responsibility for and independence in other areas of life such as school and sports, however, protect diabetes management from these expectations.
    • Start involving your teenager in process of refilling prescriptions, scheduling appointments, etc.
    • Monitor for signs of depression, eating disorders or any other risky behaviours that research shows are more common in teenagers with diabetes.
    • Begin discussion about transition to independence when leaving home.

    Diabetes Tasks You Can Expect Your Teenager Can Do

    • It may feel like you are “nagging” all the time about their diabetes, but it’s important that your teenager keeps you involved in this area of their life.
    • Help them share their concerns about diabetes with you and when they need help.
    • Maintain safety when driving – checking blood sugar before driving, have medical id, carry snacks or glucose tabs with you at all times, etc.
    • Consider involving a friend with diabetes management. Make sure that their friend knows how to help them when you have a low blood sugar.

    As our children develop, they need to meet not only physical milestones, but also intellectual and emotional ones to become a well-rounded young adult. It can be a challenge without diabetes getting in the way! As their parents, you may feel it’s important for them to master the management of their diabetes as soon as possible, so they will be ok, when you are not around. But this is likely to lead to your child struggling with too much responsibility, without the emotional and cognitive skills to handle it, and getting burnt out by their diabetes before they even leave home.

    Try to hold on to the management of their diabetes for as long as possible. This will allow your child to flourish in the other areas of their life to allow them to become a confident young person, with a level of maturity to manage their diabetes well in adulthood.

    A good question to ask yourself is, Would I Give the Keys to My Car to My Child? If the answer is No, then they are not emotionally ready to manage their diabetes.

    Recommended Books

    Think Like A Pancreas by Gary Scheiner, MS,CDE.

    Kids First Diabetes Second: tips for parenting a child with type 1 diabetes by Leighann Calentine.

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