How to remove fault and blame for parents of t1ds…
I knew I should have sent him to the sleepover with an extra pump site.
Parenting is full of the blame game. We are handed our children and told to take care of them, nurture them, feed them, clothe and bathe them and be their number one role model for life. We do everything for them and more. Especially still in the midst of a global pandemic, we are well past decision fatigue. It is beyond natural to think that the tiniest blip in their development or complication in life is a result of our lack of effort.
My 4 year old daughter recently developed two new freckles on her leg. My first thought as a mom was, “I didn’t put enough sunscreen on her last week on vacation.”
Imagine the life changing diagnosis of something like type 1 diabetes. Your child is behaving in slightly abnormal ways but you chalk it up to growth spurts, stress, new routines etc. As a social worker and Certified Diabetes Care and Education Specialist I work professionally with parents as they adjust to a new life with T1D at home.
Forced to monitor a child's every bite, count carbohydrates, often having access to a Continuous Glucose Monitor where a parent can see the fluctuations of their blood sugar with notifications every 5 minutes is a near impossible task. Parents are asked to not only act on the role of a doctor making dosing decisions, but essentially try to fight the role of the lack of the fully functioning pancreas offering a control of constantly balancing the need for food, exercise, and insulin. Tired yet? Sounds exhausting to me!
The invisible load parents carry as a parent of a child with T1D is hard. It is nonstop.
As the primary decision makers, parents are essentially forced to feel guilty when we have access to the information and then knowing there “could” have been a potentially different outcome. AND there are ways to reframe to help remove some of the blame and fault parents feel when they are mentally drained from decision fatigue, guilt, fear and self-doubt. Other than social media, or the quarterly visits to a highly specialized healthcare team like an endocrinologist, tHere is no visible self recognition for moms and dads who have a child with an invisible illness forced to perform task after task, day after day, night after night.
The results are in. Parents of children with a chronic condition are exhausted and burned out. And we know that parents are already exhausted at baseline. According to the CDC, more than 40% of school-aged children and adolescents have at least one chronic health condition,1
So how can we help parents be better versions of themselves?
How do we help reframe some of the fault and self-blame, especially after a new diagnosis.
1. A type 1 diabetes diagnosis is not preventable. How could I have ignored all that bedwetting? Why didn’t I take her to the pediatrician earlier? There is no known cause for why and how exactly type 1 diabetes, or many other long term chronic invisible illnesses invade our immune system causing immediate parental guilt. I know this is easier said than felt. Trust me. I was diagnosed with T1D when I was 6 yrs old. I had chicken pox 6 months prior to my diagnosis…if only I hadn’t gotten chicken pox at that point. We cannot change our past, AND we can use what we have in our toolbox to allow time to go through the grieving process. It is a massive change in your life. Give yourself the time YOU need to process.
2. Your acceptance schedule may vary. It may vary from your spouse, your child, your parents. Lean into this diagnosis YOU are in, this is the new you. There are days you may feel like “you’ve got this” and others you feel so overwhelmed and physically and mentally beat up. Think about those newborn days as a parent. This is a journey, not a sprint. Allow yourself the space and the time to grieve in the moment you are in.
I compare a new diagnosis to almost a “rebirth” or re-entry into parenthood. So many questions come back, feelings of isolation and loneliness, like I am the only one doing these brand new things at 3am….
If and when people ask how you are doing, it is ok to say things like “I am really overwhelmed right now and trying to process, please check in with me but know I am not trying to ignore you.”
3. “Most” of the time, the feelings of shame and fault can be viewed as temporary situations. In my coaching practice I focus on solution oriented work. Blood sugar readings change constantly, every single minute. If you feel at fault that your child didn’t have what they needed to treat a low blood sugar, or that you feel like you should have told the coach on the soccer field in more detail about the protocol to handle a situation….what can we learn from this? How can we reframe so we can do better.
What can we as parents do in that moment to futuristically solve the issue at hand. In what other scenarios have you felt shame or feelings at fault. How have you worked through them before? Make a list. Write down your strengths, and acknowledge those first.
You got this! AND It’s time to set you and your family up for success!
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