Raising a Teen with Type 1 DiabetesFriday, August 16, 2013
Moira McCarthy has written a book, Raising Teens with Diabetes: A Survival Guide for Parents, in hopes of providing fellow parents of teens with diabetes practical, real world advice dealing with specific situations teens will face and how to navigate through them.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
When Moira McCarthy’s daughter, Lauren, was diagnosed with type 1 diabetes around the time of her 6th birthday, Moira and her family didn’t have any personal experience with the disease, so initially she struggled to find support. It was before the advent of social media, and there were limited resources on the Internet overall.
Left to her own devices, McCarthy learned as much as she could to try and help her daughter in her everyday needs. She tried to be as progressive as possible with her treatment, even going so far as to have her daughter be the first young child to begin using an insulin pump in Massachusetts.
And for the first few years, Lauren’s daily diabetes plan seemed to work well for the family, and they had few major issues.
When she hit her teen years, however, things began to change for Lauren and she struggled. It was shocking to McCarthy that even as they sought the latest treatments, stayed up-to-date with diabetes education, and her daughter had been previously excelling with her management that all of a sudden they were dealing with Lauren’s rising A1c numbers and an acute DKA situation that sent her to the hospital.
McCarthy believes her daughter suffered from a combination of diabetes burnout and being allowed to self-manage her disease too early during this time.
These struggles left McCarthy dealing with a whole host of emotions, including confusion, uncertainty, and shame. Yet, through these struggles, lessons learned, and being approached about telling her experience that McCarthy decided to write her book, Raising Teens with Diabetes: A Survival Guide for Parents.
This is not a book about how McCarthy did everything right; in fact, she is very candid in saying she made mistakes along the way—like when Lauren made the transition to self-care. The book is a combination of McCarthy’s memoir during this difficult time as well as a guide for other parents that provides in-depth and comprehensive strategies to help their teens navigate through certain situations that arise during this age. McCarthy also had some medical provider assistance for the book in the form of a technical review by Jake Kushner, MD, and Barbara J. Anderson, PhD.
During this time, there are significant and delicate topics that can often leave parents without a clue in knowing how to address them. As examples, she touches upon driving, diabetes burnout, and drinking alcohol. McCarthy doesn’t shy away from these things and says there will be struggles, emotional turmoil, and some serious issues you must face as a parent of a teen with diabetes. However, she also says there is a light at the end of the tunnel.
Through the difficult times, McCarthy always maintained open communication with her daughter even when her daughter’s numbers were up and Lauren suffered through diabetes burnout.
DiabetesCare.net sat down with McCarthy to talk about some of her experiences during this time, some strategies she employed, and what her daughter told her is the most important "tool" a parent can provide for their teen with diabetes as they navigate together through these difficult years.
DiabetesCare.net: Can you talk about your experience with the transition for your daughter from parent-care to self-care management?
McCarthy: It’s easy to make the assumption that when your child is 11 or 12 years old, has had diabetes for years, and is a smart kid that he or she is ready to take on a lot of the responsibility of self-management. As parents, we subliminally encourage that at a young age. When they check their glucose, we tell them they are so mature, or buy them a present, or call all their relatives. We have a celebration.
The right thing to do is to not celebrate your child taking on responsibilities themselves. Be matter-of-fact about it and don`t make these milestones a big deal, because we are putting them up on a pedestal and they are going to fall off it.
Also, starting teens or pre-teens too early in their self-management—without any parental oversight or with very little—can lead to trouble. I learned this the hard way. They may seem capable of doing these self-management responsibilities, but they are really not ready to shoulder all that by themselves. The reason my daughter struggled in the beginning of the transition to self-management is because I did just that. She was so smart, so it was easy for me to crow about how she could handle it. After she went into DKA once, I realized very quickly as smart as a child is at that age, and as capable as they are, they absolutely need their parents invested at that time in their daily care—to a point, of course.
The challenge through the teen years is to shift the daily care slowly from you to them.
DiabetesCare.net: Can you talk about your experience raising your daughter through her teen years? What were the toughest challenges, and conversely what were some of the nicest surprises?
McCarthy: The toughest challenge for me was seeing my daughter struggle and not being able to understand why. I felt like a failure as a parent; I thought I had given her all the tools she needed, and she was not thriving the way I thought she should be at that time. I was coping with difficult emotions and trying not to be angry and disappointed and know that she was doing her best with what she had from an emotional and maturity standpoint.
I asked her recently, ‘what was the tool you most recommend parents have for their teen with diabetes?’ I thought it might be a CGM or a pump. She said, ‘mom, it’s compassion.’ She was right because I can remember I was getting upset when she was already upset during difficult times and she just needed compassion from me.
Now what made me proudest was we kept our sense of humor through the whole thing; it didn’t damage our relationship. If anything it made us closer. We were determined even in the hardest times to still have fun and enjoy life. I was not going to let diabetes rob her anymore than it could. We had our eyes on her becoming a well-rounded and successful adult. And despite all the challenges, she has become just that.
DiabetesCare.net: Was there any one specific challenge that was the most difficult as your daughter was going through her teenage years with diabetes?
McCarthy: For Lauren, it was a case of burnout. Honestly for her, it was she wanted it to go away. And I believe she practiced magical thinking that if she didn’t pay attention to her diabetes, it wasn’t there. The irony of what she sees in that now is that she felt so physically horrible that it was there more so than if she had just dealt with her daily management.
In terms of parenting, what you want to do at that point is to nag, and that is the worst thing you can do.
In the teen years, it was my responsibility to keep her safe. And she never did go into the hospital again for DKA. And this is hard for parents of younger kids to understand, but when your child is an active teenager, you may not see them for several hours a day. I was not going to say, ‘you cannot be on the high school tennis team, you cannot be your student body president, you cannot do this or that because of diabetes.’
What I could do every single day was I could witness her pricking her finger, see the meter, and whatever the number was treat it with insulin at least once or twice a day. If you know your child has done that 1 or 2 times a day, your child is never going to go into DKA.
By the time she was 18, she began to realize that at that point she was only lying to herself and only making herself feel bad if she didn’t take care of her diabetes. I said to her, ‘I have given you all the tools and it’s up to you.’ It all became clear to her in college, when she was actually on her own. I like to say, `I sent her 500 miles away with a high A1c and a low GPA and she came back with a low A1c and a high GPA!
DiabetesCare.net: Why the decision to write your book, Raising Teens with Diabetes: A Survival Guide for Parents?
McCarthy: When Lauren was going through this, I looked for resources and found none or ones that didn’t make any difference to me. I felt like there was a need out there. I also realized Lauren and I had evolved together through this experience and we had a story to tell.
Your teen struggling is almost like the scarlet letter; I was ashamed and embarrassed. I think there are a lot of people out there who feel this way and say, ‘everyone else’s child is doing fine; it’s just me that’s struggling.’ The reality is everyone else’s teen is not fine either.
I wanted to write a book that could be honest and give real world advice that could make a difference. I wanted to kind of blow the cover off this situation and help other parents not be ashamed. I really think with open discussion we can help people in this situation, or help people to avoid it.
Author Moira McCarthy and the cover of her book, Raising Teens with Diabetes: A Survival Guide for Parents.
DiabetesCare.net: You have a chapter dedicated to driving, including writing up a driving contract for a teen to sign. Why the decision to make driving this comprehensive for teens?
McCarthy: When your teen with diabetes doesn’t give himself or herself insulin or skips a glucose check, the teens are really only affecting themselves. When the teen with diabetes gets behind the wheel of car, they are taking the safety of others in their hands.
Driving is a huge responsibility and privilege, and it`s an even bigger responsibility for teens with diabetes.
This is the one place in the teen years where I never bent and Lauren will tell you that. I took her keys away from her for three months at one point, and told her, ‘you are not doing what you are supposed to be doing.’
The book contains “the low drill.” This is a drill you can practice with your child where he or she is driving along the highway or on a dark road. You tell them, ‘you are low right now, what do you do?’ It’s designed to help the teen identify what to do during a hypoglycemic episode.
I think that even teens without diabetes should know where it’s safe to pull off to the side of the road or know when they should call for help.
Teens with diabetes also need to realize there are no 504s (special school accommodations) in driving. If you are low and you cause an accident, you are going to be found at fault.
DiabetesCare.net: You also discuss drinking in the book. You have a unique take on how to approach this delicate subject. Can you provide an overview on how you did this with your daughter?
McCarthy: Lauren is my second child, and of course I also went through my teenage years, so I knew the reality of the world. While it’s illegal to drink until you are 21 in the U.S., the reality is if you are sending your child off to college and you think you can tell your 18 year old just not to drink—it’s not realistic. I believe the statistic is 1 percent of all high school seniors graduating have never tried drinking. Assuming your child is in the 1 percent is a dangerous thing to do.
I wanted to let my daughter know she could always be honest with me. She knew she could call me and say, ‘I was at a party and I drank this, what do you think I should do?’ And I would help her.
The other thing with drinking is helping them to understand they need carbohydrates matched with alcohol. It’s important to note that this not saying go ahead and drink, but if you do it, please do it safely and let me know.
I don’t approve of high school kids drinking but if my teen with diabetes is going to sneak out and drink, there is a lot more at risk for her than the other kids who are sneaking out to the woods to have a drink who don’t have diabetes.
DiabetesCare.net: Another significant issue you raise in the book is burnout, which anyone whether an adult or a teen can be subject to from time-to-time. How did you address this issue with Lauren?
McCarthy: I think it’s important to know the signs, and to not be in denial about them. I list some of the signs in the book. And teens will try to hide their burnout. The best thing you can do is be vigilant and let your child know from a young age that it’s ok to get sick of things, and you can always do something different to switch things up. Also, remind them you are there to help them do everything too.
The problem is parents can get burnt out at the same time. And you have got to take care of yourself too. If you are starting to feel burnt out then you need to find a way to take a break yourself—whether it is sleeping in, or going away for a weekend and having someone watching your child, you need to take care of yourself first, so you can take care of your child. I think part of the reason I was so willing to assume Lauren was capable of her diabetes management on her own was I was just so burned out. And yes, I feel guilt about that.
But I worked hard at learning to help me so I could help her.
DiabetesCare.net: Do you acknowledge the burnout and talk to your teen about it? How do you try to change things up?
McCarthy: One of the things I suggest is for them to sit down and talk with their endocrinology team, and discuss what the teen is capable of in their management plan. The teen might say, ‘I really don’t want to check my blood sugar at lunchtime.’ Even if this kills you to not have your child check their blood sugar, if their medical team says, ‘ok, let’s just skip that but make sure you dose for the right carbohydrates.’ Then you have to go along with that.
If you can give them a feeling of control over what they are doing every day, it can help. Another one of the things my daughter’s endocrinologist did was to cut way back on his expectations. He did so to the point Lauren said, ‘that is all you expect me to do?’ And he said, ‘yes, as long as the next time you come in and you have done this and this, I’m going to be happy.’ As a result, she did more.
If you can figure out a way for them to not have this overwhelming mountain to look at when they first get up in the morning, then they are going to find their way back.
DiabetesCare.net: What overall advice do you give to the parents of kids with diabetes that are going to be dealing with the teenage years?
McCarthy: The first thing I would say is, ‘it’s really, really hard to see, but if they squint, there is a light at the end of the tunnel. While it may be scary, it’s going to be ok.’
The best advice I can give them is that their child is going to be a healthy adult; their teen may not be the way you want them to be right now, but this is a marathon and not a sprint. Even if you have some slow miles, it doesn’t mean you aren’t going to go over that finish line victorious.
They should see my daughter now—she’s thriving. She’s in her senior year of college and on the Dean’s List. She’s interning with Congress on Capitol Hill. She has a million friends, and yes, she’s perfectly healthy. I do like that kid quite a bit. We made it through. Others will too.
Proceeds from the book are being donated to a number of diabetes charities, including JDRF. For anyone interested in more information about the book or want to purchase it, they can go here.