Joe Solowiejczyk is a registered nurse, certified diabetes educator, family therapist and magician at putting families on the road to recovery when their child has been diagnosed with Type 1 diabetes.
With the publication of Solowiejczyk’s dynamic new digital video book, A Type 1 Diabetes Guide To The Universe, he is making his knowledge, experience and presence — literally — available to families everywhere.
Filled with animations, interactive games, quizzes and presentation videos, this book is like having frequent, real-time visits with Solowiejczyk and his medical and psychologist colleagues. And, feeling the support of fellow parents, children and teens who share their pain, trumps and experiences through their stories.
Below is my interview with Solowiejczyk about the book, his life’s work teaching families how to raise kids with Type 1 diabetes and his own 55 years living with Type 1 diabetes.
RG: Why did you create this book?
JS: I wanted to give any family the tools to integrate diabetes into their lives in a way that diabetes isn’t the center of their lives, yet its impact is respected. It’s a bit like being able to stand in a fire without getting burned.
For that you need the most up to date medical information, an understanding of family dynamics and the larger picture of your child’s and your family’s life cycles with diabetes. Then you can cope and keep moving forward.
I chose to do a video book so that families feel like they’re in my office, face to face. That interaction is so powerful and critical to the healing process.
The families in the book model amazing strength and hope. To watch others break down and pick themselves up again, while feeling totally supported, you feel you’re not alone.
RG: What will families know immediately when they start the book?
JS: That falling apart and feeling sad, angry and scared are a part of the journey. That it’s not only okay to feel and acknowledge all that comes up with diabetes, but that dealing with the feelings and letting them come up and out are as important as learning how to adjust insulin doses.
As the title of the book suggests, A Type 1 Diabetes Guide to the Universe, they’ll know that with the tools in the book they can do anything and go anywhere with diabetes.
RG: What might surprise parents?
JS: That their support, respect and love for each other has direct impact on their child’s metabolic control. Also, that they should not let their kids “get away” with stuff just because they have diabetes.
They can best help their child cope with diabetes by being the same parents they were before the diagnosis. They should implement the same rules and expectations around diabetes-related behaviors and chores as they’ve created for ordinary things like doing homework, cleaning their rooms, coming home by curfew.
This is probably the hardest part for parents since they feel so pained about the diagnosis already and want to make it easier for their child.
RG: What else should parents know?
JS: Their children will be able to grow and develop with diabetes as they would have without diabetes as long as they take care of themselves. Diabetes-related complications are not a part of the overall picture and are largely preventable if you take care of yourself.
Their kids can still get bruises and broken bones and they’ll heal like anybody else. Their kids can walk around barefoot if they like. The scare about diabetes and foot problems is mostly about adults with Type 2 who don’t take care of themselves.
Having diabetes still means you can do anything and go anywhere. The better care you take of yourself or your child, the less chance there’ll be diabetes-related complications and your child need never be in the hospital again after the initial diagnosis.
RG: In the book you say that some things are non negotiable…
JS: Yes, there are some things you and your child must do, age-appropriately. They may be a pain to do, your child might hate doing them, but has to do them. For instance checking blood sugars at least four to six times a day.
This concept of non-negotiable is critical for parents to get. It is the thing that will determine how their child and family copes with diabetes. You can hate something and still do it!
RG: What are the dangers and pitfalls as kids with Type 1 diabetes grow up?
JS: One of the greatest pitfalls is not learning the lesson above. Based on my clinical work of the last 36 years, not getting that lesson is the biggest contributor to kids not doing well. Kids should be taught to be as independent as possible for their age and maturity.
RG: Part of the book’s appeal is your honesty about your own diabetes…
JS: There are days I really hate having diabetes and yet I love my life. I don’t always do my life gracefully and I don’t always manage my diabetes perfectly but I keep “suiting up and showing up.” That’s a big part of living well with diabetes and, really, the ultimate message. Do your best, make mistakes, pick yourself up, don’t beat yourself up too badly and move on.
RG: Is there any good news about having diabetes?
JS: One has the potential to learn a lot about oneself, what you’re made of. That’s a lesson most kids without diabetes don’t have to learn until they’re older and many adults never learn it. I think it’s what contributes to making kids with diabetes and their siblings “older souls” before their time.
Diabetes has given me an incredibly rich and exciting life. It has brought me deep and lasting friendships, I’ve met so many amazing and wonderful people. It’s taught me to be grateful and given me an invaluable perspective on life and people. It has informed who I am in many ways, but it’s not who I am.
RG: And the bad news?
JS: Diabetes is a pain in the ass, it’s relentless and there are no days off. Some days I want to rant how unfair it is and I give in to a little pity party. I ask some friends to call me every hour on a scheduled day and time and tell me how courageous and inspiring I am.
That day I sit with two pints of ice cream and a sad DVD on and take the first call. By the second call, I’m over it. I know it seems silly, but it helps me acknowledge that diabetes can be tough and helps me more easily move through those sad feelings.
RG: Any final words?
JS: Keep “suiting up and showing up.” Diabetes is a pain in the neck, it’s a lot of work and you can absolutely do what you need to do and have a great life.
Originally published in The Huffington Post.