From One Parent to Another: How to handle a preschooler’s diagnosis

Question:

I have a four-year-old who was diagnosed just last week with type 1 diabetes. I am struggling with whether to put him back into preschool (and if so, when). We are continually adjusting his insulin and he’s experiencing many highs and lows. The preschool is willing to learn about his disease, but with his blood sugar swinging all over the place, I’m really worried that it would be unsafe to return him to a classroom with 22 other kids. Any suggestions? I have a flexible schedule, but I don’t want to be too overprotective. What have others done?

Message:

My wife and I have two sons, Will and Kyle. Kyle was diagnosed with type I diabetes over 11years ago when he was just 18 months old. Though I can’t give you medical advice, hopefully I can provide you with some practical advice that we have picked up through the years.

First and foremost, I want to tell you that it will get better. When Kyle was diagnosed, I experienced that overwhelming feeling you and your family have now. It was so hard for us to let go, and with every activity or class that we brought him to, we worried constantly about whether he’d be okay. It takes a little while, but you will eventually see that your son will start to feel better (because his blood sugar will be better managed). In fact, in my opinion, children generally handle the diagnosis better than adults do. It still amazes me how much courage these kids have. They are truly impressive. Having a child with diabetes is always a balancing act. I find myself “babying” Kyle and being more lenient with him because of his diabetes. However, on the other hand, I want to show him that having diabetes will not keep him from doing whatever he wants to do in life.

It may help to remember not to let blood sugar swings get you down. Blood sugar is impacted by so many different factors (food, type of food, exercise, etc.), which makes it hard to regulate, even if you’re doing just about everything right. In the beginning, it takes some time to get dosages tweaked – that is normal and expected.

Regarding preschool – that is a very tough decision for parents of kids with type 1. It might be a good idea to take a couple of weeks as “sick time” and then maybe bring him back to preschool so he can see his friends. Don’t underestimate the importance of social interaction for your son. Preschool allows for that interaction, which I believe really helps with letting kids with type 1 adjust and feel less “different” from their peers. Another option is that you could possibly spend time at your son’s preschool during the critical times of dosing, checking, and so on, if you’re really concerned about his safety. If you go this route, I would suggest that you and your son do a “show-and-tell” session with his classes and teachers in order to educate them about diabetes. Many people know almost nothing about type 1. They wonder if it is contagious (which, of course, it is not), what that meter is that people carry around, and what that cell-phone looking thing is on his belt (if he is using an insulin pump). Let them ask questions and help them see that your son is still the same friend that he was before. You are lucky that you have a preschool staff that is willing to learn and help. You will probably just have to play it by ear and see how it goes.

JDRF actually offers a free School Advisory Toolkit. This toolkit guides parents and school administrators in working together to provide the best at-school diabetes management possible for kids with type 1. I also strongly recommend a great book written by a parent titled The Everything Parent’s Guide to Children With Juvenile Diabetes: Reassuring Advice for Managing Symptoms and Raising a Happy, Healthy Child (Paperback) by Moira McCarthy. Moira is involved with JDRF and the book is wonderful. I wish I had it when Kyle was diagnosed. The Amazon.com link for purchasing the book is:

www.amazon.com/Everything-Parents-Children-Juvenile-Diabetes/dp/1598692461/ref=sr_1_7?ie=UTF8&s=books&qid=1222524130&sr=8-7

Also, you found a great site in www.jdrf.org. There are tremendous resources on the site, especially in the “Life With Diabetes” tab. Another resource to check out is the parent-run site www.childrenwithdiabetes.com. This site has product reviews and a huge amount of information about the disease, as well.

Before I close, I would like to pass along some bits of advice that my family’s picked up over the years and that you and your family may find helpful. I think these be may be useful if you’re looking for things you can do to feel more comfortable with the idea of sending your son back to preschool:

  • Get a medical alert bracelet. This is very important to have if something happens and no family members are around.
  • I would suggest keeping a small notebook and dedicating a page to each day. We tracked Kyle’s blood sugar numbers, carbs, type of food, doses, and any unusual experiences (illness, extra activity, etc.). This way, we could go back and review if there was an unexpected high or low to see how and why it happened. We could see that we missed a carb count and adjust for it in the future. We also keep a page with questions that would come up for the doctor. Often, questions would come at odd hours (e.g., 2:00 am) and we wouldn’t remember them the next morning. This way, we had a single page to refer back to when we talked with the doctor.
  • Speaking of doctors, it is important to be in constant contact with the doctor in these first few weeks and months. It takes a while to get the dosages and ratios adjusted. It is crucial that this communication occurs so that you can start improving your son’s diabetes management.
  • It will take a while to get dosages, carb ratios, etc. just right; so don’t let blood sugar swings discourage you. Be diligent about checking and recording the numbers.
  • Get in touch with other parents of kids with type 1. Many local JDRF chapter offices have support groups or can put you in touch with other parents in your area.
  • Obtain a JDRF Bag of Hope for your son, if you haven’t already. A Bag of Hope contains a lot of information about diabetes, a meter, local JDRF information, and a stuffed bear named Rufus. Rufus (who has diabetes, too) wears his own JDRF t-shirt and has patches where he receives injections and checks his blood sugar. Kyle’s Rufus bear has been with us to the doctor, the beach, and many other places. He is still Kyle’s favorite stuffed animal.

The bottom line in all of this is that I have been in your family’s shoes and it does get better. I like to think of it as a journey. There are some bumps in the road, but we are all on the same road, going toward the same destination: better treatments and a cure for our kids.