“Hey, A you need to check your blood sugar levels.” She looks at me. Pauses. Then she continues what she was originally doing. I believe she heard me. I want to correct her. Before I do, I sit and think for a moment. I can sense a certain level of passive resistance in her lack of response. I’m constantly reminding Anabel that I will not tell her what to do with her body. There are enough daily demands on her with her condition that must leave her feeling out of control often. I fix my statement. “Anabel, when you’re ready and if you would like to eat we will need your current blood glucose level.” She pauses again and then responds. “Okay, mom. I am hungry.” She goes to get her blood glucose meter. When my children were toddlers I used the term ‘immediate obedience’ to communicate that they needed to listen to mom and dad. That was important to keep them safe and at an early age to teach them the importance of listening to adults who they knew. I guess in the current day and time its ‘old school’ but when I was growing up if I didn’t listen to my mother or grandmother there was bound to be trouble.
Early on after her initial diagnosis like most parents I guess I was obsessive about her BG levels. I panicked when her blood sugar was high and low. They were very often low and I would react with my tone of voice and facial expression when I saw a number I didn’t like. This was unconscious. However, when it was brought to my attention I realized that my unintentional responses were impacting my sweet brown child. A very wise and experienced staff member from Northeast JDRF discussed the importance of language choices when talking to our kids who have T1D. One of the key messages of this dialogue was to avoid the communication pitfalls. Here are some of those takeaways:
- Avoid value judgements. We don’t discuss high blood sugars or low blood sugars as good or bad, they are just a number.
- Give ownership. Each child with T1D has a choice to make about the care and maintenance of their condition. Giving increasing ownership over care and decision-making is important in their growth, development and overall independence.
- Be patient. Just because a request was made does not mean our babes will respond immediately. That immediate obedience expectation isn’t applicable anymore for us. Many of the requests we have of our children are physically painful for them. We can’t expect that they will quickly and enthusiastically comply.
- Give options. We all want options, don’t we? Our kids should have 2-3 options to choose in the moment when diabetes care is needed. Example: Hey A, do you want to change your infusion site in the morning or before you got to bed? When she doesn’t want to change her infusion site. I always remind her that we can go back to doing insulin shots before she eats and long acting insulin at bedtime. She has a choice! Thankfully, at this point she consistently chooses the infusion site change.
- They are not their condition. When A comes home from school one of the first things I want to do is ask her how she is feeling physically or how her levels were. However, there is so much more to her than this condition. It can’t be the first or even primary topic we discuss with her.
I’m fortunate to have a very reasonable child who is inherently responsible and thoughtful. It has been a very easy task discussing her options with her around her care and putting a lot of the responsibility in her hands. I know all parents don’t have this experience. A is also only 9 so any resistance we get is passive and short lived. I know it may not always be this way. I also acknowledge that teens and those who are frustrated with their condition will, at times, very naturally rebel against it. We’ve got a long way to go along this journey and there are bound to be bumps and bruises along the way. I have, however, made a commitment to respect A’s right to be treated with respect and that begins with my purposeful language.