We’re hosting Roundtable chats every Monday, Wednesday, and Friday at Noon ET in August. This Monday’s chat focused on the topic of “Parenting a Child with a Chronic Illness.” Here were Monday’s panelists:
Scott Benner – http://www.ardensday.com/
Christina Ghosn – http://www.stickwithitsugar.com
Roundtable Recap: Parenting a Child with a Chronic Illness
by Michelle
With this month’s “Advocating for Another” theme, Monday’s Health Activist Roundtable continued to explore the connection between caregiving and advocacy. Below is a recap of the conversation with two panelists who discussed the issue of parenting a child with a chronic illness. If you are interested in joining us for one of our roundtables, please visit our Facebook event to RSVP. Here is a list of Monday’s participants:
Parents of children who have chronic illnesses, like Type 1 Diabetes, know the challenges of daily life in managing to keep their loved ones alive. During the Health Activist Roundtable on Monday, two special parents shared their views and experiences as caregivers and advocates for their children who suffer from Type 1 Diabetes. These caregivers recognize and understand the importance of getting the schools on board with their children’s condition, as well as the importance of educating the general population about diabetes.
The Challenges They Face in Advocating for Their Loved Ones
Christina: The lack of education in the world in regards to diabetes is probably the largest challenge that you meet, and the misconceptions that people have about diabetes. You want people to understand that diabetes is manageable because you don’t want them to be scared of it, but you also don’t want them to think that your life is a piece of cake (pun intended) and that it isn’t that simple.
Scott: The biggest challenge for me is not to let my daughter become her illness. It really doesn’t care if it’s your birthday. It doesn’t care if it’s Christmas morning, if it’s four o’clock in the morning, or if you haven’t slept in three days. It’s still going to do what it does and you have to manage it. At the same time, you have to deal with life, completely unattached to diabetes, while you’re literally keeping yourself alive. Imagine if you have to remember to make your heart beat, or if you had to think to yourself, “Breathe in, breathe out,” constantly. I think that’s what’s having a chronic illness is like.
The Most Rewarding Thing About Being an Advocate
Christina: Meeting people over the online community, in the social media, probably has been the most rewarding part for me. For my kids, it has given them so much confidence, and it just made them stronger people.
Scott: It would almost be too easy to say that meeting people has been amazing, but it is. I can’t tell you how many people have changed my life. I think the blogging helps me more than it helps them. It’s a great symbiotic relationship.
The Uniqueness of Parenting a Child with a Chronic Illness
Christina: We’re always on.
Scott: It never goes away.
Christina: One of the challenges is not the be the winey, difficult parent, but to be the parent that advocates for their kid to keep them safe, and at the same time tell everyone that they’re just like everyone else… There are so many other people involved in taking care of your children [teachers, babysitters, school nurse]. When you think about your care team, who do you include and how do you get them on your team?
Handling the Transition to More Independence
Scott: Lucky for us, right before Governor Corzine went out of office in New Jersey, he signed a bill saying kids with diabetes could test their blood sugar in their classroom. At the 504 meeting, I said I think it’s time for Arden (third grade) to start taking more responsibility for herself. She should start managing her own diabetes in the room by herself and she can call me if she has any questions. It’s going to give her freedom away from the nurses. It can’t be done before the kids are ready for it. It can’t be done before the staff is ready for it. You have to put all those pieces in place before you jump, and don’t jump too soon. Make sure you’re ready, and make sure your child is ready.
Christina: I think it’s an individual thing for each child, too. For Marcus, I don’t know, he’s a boy. He’s not going to be ready to test his own blood sugar in the classroom and then call me. He’s still going to need some reminders, while my daughter has been doing it herself since the fourth grade.
Education, Education, Education
Scott: About a week into the school year once everything settles down, I come into the classroom and talk to the kids for five minutes about what diabetes really is on a level that they can understand. Then Arden takes her meter out, jabs herself in the finger, makes a nice big blood drop so everyone can see it, tests herself, puts it away, and just makes the whole thing normal in five seconds.
Christina: Fear of diabetes or fear of chronic illness that could be life-threatening to your child is what’s going to drive all of the pushback from administrators and teachers at school. It’s like a thin, tightrope that you’re walking because you want to put the fear at ease, but then you also want to impress on them the importance of keeping your daughter safe because if she goes too low, she’s going to have seizures. She could die. She could go into a coma if her blood sugars are too high.
Scott: I just make it this idea that it’s really life or death important, and that most moments, most days, are going to go by without an issue, but if we’re not ready, you just need to know how to react organically when it happens. It’s just conversations – multiple, real conversations.
Sibling Dynamic in Managing Diabetes Together
Christina: It’s always a competition. You know, I treat them first as my child and then the diabetes second. And then at the same time, I remind my kids that they’re more than a number, there’s no good or bad number. It doesn’t matter how many times you say that because it’s always a competition. When they test their blood sugar together at breakfast, one of them is going to say, “I’m better than you!”
Advice for Parents with Newly Diagnosed Children
Scott: The first thing you have to do is find a community somewhere that can help you. You will quickly understand this illness better than the doctor you have.
Christina: Doctors offices should tell people that there is a huge community of support out there. And don’t forget to take care of yourself. You can’t take care of the people you love when your body is failing.
Scott: It’s important, if you’re in a two-parent household, that one of you takes primary care of what’s going on, but the other one can’t just fall out of it thinking you have it. Both of you need to understand how to help your child every step of the way… You can’t fundamentally ignore that having a chronic illness sucks. [The blogs] Being able to feel those emotions and not have to connect them to your own child, I think, lifts a pretty heavy burden.
Resources, Programs, and Research
Scott: Someone should go through everyone’s blog and pick out the most helpful blog post, put them in a brochure, and leave them in doctors’ offices. You can’t ignore that what’s happening online is so powerful.
Christina: We live technological society. We live in an online society where there is always support available. So regardless of the chronic illness, support is out there and you’re not alone.
Scott: I don’t want to look up one day and find out that [patient advocacy] burned out.
A huge thanks to Scott and Christina for participating in Monday’s stimulating roundtable discussion. Listening to their stories and perspectives was mind-opening for me. The work that they do as Health Activists brings so much honesty and inspiration to the community. This experience proved to me how dedicated Heath Activists and caregivers are to their loved ones, as well as to raising awareness about their conditions. Thanks for all that you do!
We hope you’ll be able to join one of the chats – you can RSVP here on our Facebook event to see who else will be attending.
