Transitioning Diabetes Care From D-Parent To Child

Like many of us, Willa’s diagnosis came out of the blue – no family history, not even classic symptoms of excessive thirst and urination. In our case, her diagnosis came early, but as with most diagnoses, Willa had to be admitted to the hospital for a couple of days so we could learn to be her pancreas. At the Children’s Hospital, we had incredible teachers and included Willa in almost all of our conversations and training sessions.

Our approach was to have high expectations of Willa, while not overloading her with information inappropriate for an 8-year-old. We knew she was capable of understanding how her body functioned, doing the maths to count her carbohydrates, and learning how to use her pump and continuous glucose monitor (CGM), so we included her in all of the diabetes education and training. Sometimes she participated attentively, and sometimes she was distracted, like children are. When it came to the important moments, she was always involved in discussions about her body and what we had to do to make it work properly now that her pancreas was failing.

For the first year, we directly oversaw everything she did with the pump – entering carbs, bolusing, temp basal changes, rewinding and priming her tubing, etc., so she knew how to operate her pump. We set the expectation she would manage her pump, though we continued to be involved to keep her safe, we were confident she was entirely capable.

Willa started gaining more independence with baby steps, leading to bigger and bigger steps. Each time we gave her a little more independence, we would take into consideration two factors: Can we trust that she will be able to keep herself safe and is she internally motivated to take the next step towards independence?

In Year 4 at school, with direct oversight by her teachers who we trained, Willa took care of her lunchtime bolus by adding the carbs, entering the number in the pump, testing her blood glucose (BG), and activating the bolus. She was not allowed to activate the bolus until her teacher checked that she did everything correctly. Her teacher would email me after lunch so I could see how the day was going.

By Year 5 at school, Willa didn’t have to check with her teacher before she bolused. She just had to supply the numbers to her teacher – BG, carbs, insulin units – and the teacher would text me. This way, if I saw something out of the ordinary, I could call the school. By the time we gave Willa this level of independence, she had been very successful handling lunch with clear intention, and trouble-shooting with her teacher and me when necessary. She had a proven track record, and we trusted she was ready to take the next step.

Moving into middle school, Willa asked for more independence. She wanted to go to sleepovers. She didn’t want to check in with a teacher or us at lunch time. She wanted to go on a field trip without one of her parents as the chaperone. She was ready to change her own infusion set. She didn’t want us even touching her pump sometimes – it was hers and very personal, it was her “pancreas” after all.

Each time we give her more independence, we make it clear that safety is the number one priority. If we don’t feel she is going to be safe, then she needs to find a way to do it with our help. She also needs to consistently demonstrate she is capable of taking on new responsibilities.

As Willa moves into adolescence and feels the natural push to independence that comes with this time of life, our goal is to help her create behavioral patterns that will serve her well through her teenage years. We want to give her the social and emotional scaffolding to make her feel like she has help, love and support when she needs it. There are no guarantees with this disease, and there’s very little room for error. You have to be on top of managing it 24/7. Handing over that responsibility to your child, even if it’s just a start to the process toward independence, can be emotional and scary.

This is our approach:

• Expect our child is capable. She needs to demonstrate she can reliably take on a task independently, but if she knows deep down we have confidence in her, she will gain confidence in herself.
• Make sure we feel that our child is safe. Diabetes management won’t always be perfect, but safety is the bottom line.
• Train other adults in charge. I often send this great video from JDRF to someone before I train them to give them context.
• Take baby steps, and then bigger steps.
• Build in checks and balances and redundancies. Make sure there are extra supplies at school, home, church/temple, camps, etc. We use the three-hour rule – we check in with Willa about every three hours to make sure she’s safe, unless she’s at school where the adults know her well and have had training. Being organised and prepared helps give us room to let Willa have more independence.
• Give our child the opportunity to learn and get support from others with T1D.  We also try to attend a T1D symposium once a year and participate in T1D groups. Just finding other children with T1D for playdates gave Willa strength and confidence that everything would be ok in the early days.

Every family has to do what’s best for them and their child, and as our wise endocrinologist told us, type 1 is all about trial and error. For us, there have been many trials and lots of errors, but we keep pushing forward to do our best for Willa so someday she can do the best for herself.