What They Don’t Tell You at the Hospital

When your child is first diagnosed with type 1 diabetes, you’re faced with an overwhelming amount of new information to learn. With so much to take in, there’s often not enough time for all of your questions to be answered at the hospital—especially those more practical, day-to-day life questions. As you try to settle into your new routine, have you found yourself wondering, Hey, what about…? Here are answers to some of the most looming questions parents are left with during those first few days at home.

Q: When I notice something new or have something on my mind, how do I know when it’s time to call our diabetes care team?

“When a child first goes home from the hospital after diagnosis, diabetes care providers commonly expect to hear from the parents daily until a sense of routine has been established. Your care team may have communicated a time frame during which you should call them regularly just to check in; if not, or you can’t remember, simply call them up now and ask. Outside of general check-ins, always feel comfortable calling your diabetes care provider whenever something comes up in your child’s diabetes management that you don’t understand or don’t know how to respond to. Rather than guess or experiment, ask your provider, who can then tell you how best to proceed.”

—Shirley Goodman, R.N., C.D.E., staff diabetes educator in the pediatric endocrinology department at the Ann & Robert H. Lurie Children’s Hospital of Chicago

Q: Our son keeps asking when he can go back to soccer practice and see his friends again. What’s the answer?

“The moment your child gets back into his usual routine will probably be the moment it clicks for your child that he or she is okay and life will continue just the same. For most kids diagnosed with diabetes, it’s advisable to return to school within a few days of leaving the hospital, as long as blood sugars have stabilized and a care plan has been established at school. As soon as he feels up to it, sports and social time with friends can follow. For specifics on what’s best for your child, this is a great—and expected—question for you to ask your own diabetes care team.”

—Shirley Goodman, R.N., C.D.E.

Q: When should I go back to work?

“Many working parents wait until after their child has settled into their school or daycare routine before heading back to work. A child with diabetes may return to school within a day or two of getting out of the hospital. While it’s helpful for the child to get back to normal activities as soon as possible, there is usually work for the parent to do in the background in order to make sure diabetes care routines are being followed at school and, in general, getting a read on how everything is going. Depending on your circumstances, this could take a few weeks.”

—Shirley Goodman, R.N., C.D.E.

Q: When people ask me if they can do anything to help, what should I say?

“Just as it’s hard for you to grasp the reality that your child was diagnosed with type 1 diabetes, often friends and family, too, feel powerless and just want to be of service. I remember feeling the most supported when my family members were direct in telling me that they were coming over to learn how to test my son’s blood sugar and that they wanted to learn everything they could. When people ‘walk the walk’ and actually follow through with hands-on help, parents can really take that much needed deep breath—and no longer feel so alone with this new diagnosis. The more you allow others into your ‘new world’ of diabetes, the less isolated you will feel.”

—Ellen Bradley-Windell, L.C.S.W., family and child therapist in private practice in Valencia, Calif.

Q: How long will it take for our family’s life to “go back to normal”?

“We know that many families literally go through a grieving process after a child’s diagnosis of diabetes, beginning with shock and denial and working toward acknowledgment and acceptance. Your ‘new normal’ is going to be different, but it is important for your child that it doesn’t become all-consuming. I encourage parents to take care of themselves first and foremost, so they can model for their child that they are all in this together. The ‘new normal’ should include making new memories, creating new traditions, taking time for yourself, and keeping the energy in the home positive. Life will get back to a new sense of normalcy sooner when you seek outside support, such as joining a parent support group, attending a family diabetes camp (awesome!), and, in general, becoming the best advocate for your child.”

—Ellen Bradley-Windell, L.C.S.W.

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.

 

Related topics:
Newly Diagnosed: Doctors Answer Type 1 Diabetes FAQs
How I Know You’ll Get Through This
Moms Reveal: How We Found Our “New Normal”

See more In the Spotlight topics >