Explain your role as T1D Education Coordinator.
I’m the Education Coordinator for our Type 1 Diabetes (T1D) program for youth, Beyond the Diagnosis. The program is sponsored by Mercy Foundation for youth with Type 1 Diabetes (T1D). Our goal is to support youth who have T1D and their families, by helping them manage this chronic disease, ensuring they have the resources and support they need. We have over 60 families who participate in our program.
Monthly peer-to-peer mentoring and family support groups are organized to alternate between educational topics and social activities to increase social/emotional well-being. Social activities where families participate together such as swimming or bowling, strengthen familial bonds. In January 2023, we went bowling and in February we partnered with OSU’s SNAP-Ed program to bake bread and make soup. It was all-hands on for kids who had a lot of fun. In May we will have pizza and a discussion on the emotional and mental health issues related to T1D.
What kind of information is given out at these youth events?
All meetings are learning opportunities. We provide education handouts such as information about summer camps, recipes, summer safety, carb counting and a variety of T1D topics. In addition to information about community and regional resources, ideas and strategies families exchange with one another are invaluable and an important source of information.
Why are you involved in T1D support?
My own son has T1D and this is a labor of love. When your child has a chronic disease, it can be a lot of work – 24/7. You can feel isolated and alone, especially with so many misconceptions about T1D. Sometimes all families need is to be able to talk to others and share their experiences of what does and doesn’t work.
Type 1 Diabetes is an autoimmune disease that is not preventable and has no cure. Treatment includes multiple daily blood sugar checks, carb counting and insulin injections. Each child responds differently. A cookie cutter approach doesn’t work and it takes trial and error to understand insulin dosing, carb counting, changes in the body and how certain foods & exercise can affect their blood sugar levels.When you hear about other people’s struggles, you realize, “Okay, we’re not alone in this. My child is not the only one that is struggling with certain aspects of managing T1D.”
How old are the kids in this program?
We have youth of all ages, with the youngest being four and the oldest eighteen.
This year, our teens have been getting more involved, so I’m really excited for them. We collaborate with the Douglas County Educational Service District (ESD) nurses to get information about the program out to schools.
You can be diagnosed with T1D at any age. It is more probable to see a diagnosis in youth, sometimes as early as infancy. However, you can be diagnosed at any age. I have an uncle that was diagnosed at 21 years old and we’ve had people as old as 80 get diagnosed.
When do you see people or families join this program?
The program first started in 2018 after a phone call to Mercy Foundation regarding two youth who attempted suicide because of the isolation they felt after being diagnosed with T1D. It is important to remember that kids want to “fit in” and how ostracized they can feel because they now have to deal with a chronic disease that involves dosing with insulin or wearing a pump.
Because of those calls, Mercy Foundation saw the need and launched the program. We knew these kids, and their families, needed more support. From my son’s diagnosis, I know the emotional distress youth can experience.
One of the challenges families were facing was the lack of local resources. Families would receive the diagnosis and have to travel outside of Douglas County for treatment and assistance. They were overwhelmed with the information they received because coming back to Douglas County, there was no warm hand off to any specific agency. Now, because of our program and outreach, we have Dr. Racine, a pediatric endocrinologist residing at Evergreen since 2021 in Roseburg. Along with representatives from Evergreen, Cow Creek, Mercy Foundation, Aviva, and Douglas ESD, we have a steering committee that oversees the program strategizing on providing resources and minimizing barriers that families may have.
We are able to reach out to people as soon as they are diagnosed. The school nurses are helping connect them to our program. It’s been great because we have had a couple families who reached out just because they know of other people who are involved in the program. I’ve had people call me [about the program] while they’re in the hospital and I’ve been able to call the ESD Nurses and they can take the necessary steps to ensure the child gets the care and support they need at the school level.
What are some of the benefits or improvements you see from the program? How quickly?
As we have emerged from the pandemic, attendance is up! The families have said they feel 100% supported by the program. About 80% of them have said that they feel like they’ve learned more about T1D since being in the program. The other 20% haven’t been involved long enough to give a clear answer.
Tell me about the T1D summer camps.
Oregon offers three camps for youth with T1D: Camp at Tamarack; Gales Creek or Chris Dudley Basketball Camp. All camps have different activities and some accommodate families. Just like all summer camps, they are safe and fun environments where children and teens make new friends and learn more ways to manage their diabetes.
Last year, we noticed that when talking to the families a lot of them didn’t feel comfortable sending their kids to a camp three hours away from home because their kids are always under their care, 24/7. It’s hard to let go of that control and let somebody else have them for a week. Also camp fees were a financial hardship many could not afford.
We decided to offer scholarships for anyone interested in going to one of those three camps.
We also wanted to offer something for our families locally and started our own two-day camp. It was so successful we are offering it again in July. Our camp is similar to Camp Tamarack because we have a lot of shy children involved in the program, so we offer to let them bring a buddy where their friends can also learn about T1D. Our camp offers gardening and arts and crafts. We even had an open discussion just about T1D and the kids got to stand up and talk about it and give their own explanation. It was pretty impressive because we had an eight year old explaining T1D, “My beta cells got attacked by my immune system.” They’re very knowledgeable about their disease, and they want to educate people as long as others are willing to listen. Empowering our youth to advocate and bring awareness is important in helping build their confidence with managing T1D, especially as they get older and are doing most of the day to day management on their own.
A couple of the kids’ families reached out after camp to tell us about a time when they went to the park and their child who had just learned about T1D at camp said, “Mom, that little boy over there is kind of acting funny. Maybe he has low blood sugar like we learned about.” It was just really nice. It’s a community!
Explain telehealth is and what schools use it for.
Yes! There are specific schools that are contracted with Dr. Racine. Evergreen is available via telehealth to see our T1D kids who are his patients. This way, it doesn’t interrupt their day to go to the appointment, and it’s all done with the parent’s consent. It’s basically like having the kid’s doctor visit at school rather than having to leave for the day. It’s also available for all kids who attend a school that is signed up for telehealth with Evergreen, making healthcare more approachable and accessible. It’s nice for working parents as they can actually do a three-way conference call. If the parents are at work, they could call the parent and then patch them in so the child, the provider, and the parent can all be on the call.
Highlight Program of the Year
I would say that the highlight of the year has been increased participation at our monthly meetings. During the pandemic even when we held events with safe distancing, the number of families attending decreased dramatically. We worked to maintain connection through Zoom and our Facebook group, but it wasn’t the same. One of the strengths of our program is the face to face connection that goes on between families.
However, this year, we changed things up a bit. We sent out calendar events so the families knew what we were doing for the whole year, ahead of time. We sent it out in different ways, like email and Facebook. We also mailed the invites out to all the families so they could post it on their fridge. We started January with over 50 people in attendance, which was great!
Along with more participation is seeing teen involvement. We’ve always wanted to see more involvement with our teens. We have a great group of teens right now who are leaders. A lot of them are mentoring younger kids. We strive to keep them involved to show some of the younger kids that they can do this too. We have a lot of our teens that don’t want to do the whole day camp thing, so they join us as a volunteer. My son who is 15, was diagnosed at the age of 10, volunteered to manage a baseball activity at camp last year for the younger kids. The younger kids loved being able to connect with someone they could look up to and can relate to having T1D. Having the teens volunteer is a great way to keep them involved; it helps them fulfill volunteer requirements for graduation. Peer support provides an abundance of positive benefits to our youth, especially with their mental health in living with T1D. With the knowledge and understanding they gain about T1D, they become ambassadors for the program.
Why do you love your job?
We have a family history of T1D. My uncle has T1D, my sister was diagnosed at the age of five, and my son was diagnosed at the age of 10. After my son was diagnosed, I was focusing on case management and it drove my passion a little more towards diabetes in general.
I attended the first meeting Mercy Foundation organized and became more involved. Then I was offered the position and I knew I found my calling. My passion has just been coming from my personal life and those I love. I’ve seen the struggles my sister has faced and the struggles my son has faced. I saw the lack of resources in Douglas County. I wanted to make sure that other families didn’t feel as isolated; I want them to feel supported and know that there’s more people out there who can relate to what they are going through. Every child deserves an advocate who is there to support them every step of the way.
