11. Give both the teacher and the nurse extra diabetes supplies. Clearly the nurse will need more, since he or she will most likely be giving most of the shots, etc., during school hours. I gave a smaller set of supplies to the teacher in case they are unable to get to the nurse. In our case, the nurse gets a back-up glucometer set and Novopen, lantus and syringes, alcohol pads, disposable needles, test strips, and lancets. I didn’t give her the ketone testing stuff because I decided if Annie’s sick enough to have ketones, she’s not in school. The teacher got the same list of things as the nurse, only in much smaller quantities.
12. Talk to your child’s classmates. As parents, you’ll want to decide what to say to your child’s class and whether your child wants to be there with you. They may be uncomfortable with “everyone talking about me” and want to take a walk to the library, depending on how old they are.) One book that seems pretty good for younger kids is Taking Diabetes to School by Kim Gosselin, which I believe is in the Bag of Hope and is available on Amazon.com. Read it to your child beforehand so they are not surprised by any of the information in it. It may be hard emotionally for you to talk to the other kids; if so, you can always just read Gosselin's book out loud.
13. Must-Have Books. You should order three copies of The Doctor’s Pocket Calorie, Fat and Carb Counter by Allan Borushek. It’s only $6.99 and you’ll use it a lot. One copy is for the nurse to compute school lunches, one copy is for your house to help with the rest of the meals, and one is for the glove compartment of the car for when you’re out at restaurants. This book has a section for national restaurant chains, which is helpful even if you’re not at a national chain because you can approximate. Be sure to familiarize yourself with the book, so that you don’t confuse the “Calorie” and “Carb” columns and mistakenly give your child insulin based on the calorie count.
14. Order a Medic Alert bracelet for your child. You can find one at medicalert.org. They have kids sizes and they’re almost impossible to take off. Medical personnel worldwide are trained to look for the bracelets before beginning any treatment, so your child will immediately be recognized as a diabetic in an emergency. They call an 800 number and have immediate access to the child’s medical info (exactly what insulin they’re on, the endocrinologist’s name, parent contact info, etc.) Medic Alert also ensures that anytime a lost child wearing the bracelet has been located or rescued, they will contact the parents immediately. We’ve found other “fun” versions of Medic Alert bracelets—leopard print or beaded ones—but they’re not so great. They either fall off easily or have to be taken off for showers and baths. The plain old stainless steel chain is the best.
15. Let your family know what’s going on. Think about sending an e-mail to your friends and extended family about what’s happened, so you don’t have to keep telling people in person when you see them. It gets awkward, because people don’t know what to say and may say something inappropriate in front of your child. It’s nicer to give them warning, and who knows, maybe they’ll even say a few prayers for you.
16. Think about getting a baby monitor. For younger kids and for those who have to go up or down stairs to get to you in the middle of the night, you might want to buy a set of baby monitors for their bedroom. That way, if their blood sugar goes low in the middle of the night, they can just call for you to come to them—instead of them wandering around in the dark trying to find you. Plus, it will give you some peace of mind, just as it did when they were babies. Make a clear path to the bathroom and put a nightlight in the bathroom. We found that our child often had high blood sugar in the middle of the night, she would be dazed looking for the bathroom.
17. Keep yourself informed. After things settle down, set aside some time to learn about diabetes. In addition to the books in the Bag of Hope and from your doctor, you might want to check other Web sites that may be helpful. Also, consider participating in some of the research studies involving diabetes—specifically check the NIH Web site for information. It may be too much for you to take on at this time, but there are some studies that only accept people within the first six weeks of diagnosis. Be empowered to make your own decisions about being involved – don’t let missed deadlines take away options. Understand that the research may not directly benefit your child. There is no cure at this time, but you could help science move toward a cure in the near future.
18. Most of all, take some time for your own mental health. Having a child diagnosed with diabetes is a life-changing event. Perhaps you think you’ll never be able to leave the child alone again, no more vacations, no more nights out, no more sleeping through the night. But things will get better, and eventually you’ll be able to make diabetes just another part of your lives. In these first few days, try and take a few minutes for your own sanity—even if it’s just a walk around the block, a hot shower or a few pages of reading from your favorite novel. It’s natural to be upset about this diagnosis. But try not to get too stressed or sad, especially in front of your child. They are basing their attitude to this disease on everything you say and do. So try to take one thing at a time and believe that things will get better soon.
Please don’t hesitate to ask me a question or leave a message about how you are doing. And let me know if you have any more tips for people just starting out with this condition.
