Off the Dial

Welcome to my home for my take on everything diabetes-related. Here is where I try to keep my son’s condition in perspective, and share hopeful and inspiring stories, opinions, and knowledge, as well as our common struggles. Join me to share your wisdom, too. We’re in this together.

#DSMA – Numbers & Emotions

Every Wednesday at 9pm (Eastern) we talk diabetes on twitter. Using the hashtag #dsma, the great people behind the Diabetes Social Media Advocacy account ask questions and spark a fast-moving conversation. This week was all about numbers.  I was a bit surprised when a response I gave got a pretty big reaction.

Here’s how it looked on Twitter:

Some of the responses:

I wish doctors and health care providers gave us more education about the emotions that diabetes numbers can bring. It’s a real thing. We need to keep talking about it.

(Want to join the next #dsma chat? Learn more here) 

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Diabetes Connections – Safe at School

Time to start thinking about back to school! I know, many districts don’t start until after Labor Day, but throughout much of the country, August means it’s time to head to class. With that in mind, let’s talk about about diabetes and school.

My guest is Crystal Jackson, head of the American Diabetes Association’s Safe at School program. She walks us through legal rights, common challenges and how to form a partnership with your child’s school. Jackson has a grown daughter with type 1 – she’s walked the walk. You’ll also hear from a mom whose child with diabetes attends a charter school. She shares her experiences and gives some good advice for the unexpected. I talk about setting goals that make sense at the elementary school level:

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Helpful links:

American Diabetes Association Safe at School (main page)

ADA Safe at School Webinars 

Need to talk to someone? 1-800-Diabetes (1-800-342-2383)

 

Dream on 3

dreamon3A few weeks ago, I noticed a new account following me on Twitter. @Dream_On_3 says they make  sports dreams come true for Charlotte-area children with chronic illnesses, developmental disabilities, or life-altering conditions. Then I saw this month they made a dream come true for a child with type 1 diabetes and I really wanted to learn more. I got in touch with Shannon Griffin, their communications director:

Stacey: How did you come up with the idea for Dream On 3, what does the name mean?

Shannon Griffin: Our founders, Brandon and Elizabeth Lindsey get this question a lot! In a nutshell, Brandon and his wife felt called to give back. There is a magic in the world of sports that he wanted to bring to life for children with chronic illnesses or special needs. Brandon and Elizabeth are often asked if they have a child with an illness/special need that inspired them to do this, and most are surprised to learn that they don’t.  Dream On 3 comes from the idea of putting our hands in the huddle to say “Dream on 3…1, 2, 3, Dream!”

Stacey: What kinds of experiences are you providing?

Shannon: Each Dream Experience is custom designed for that particular child. Their sports dreams vary- some specific examples: “to meet any yankees player and hit a ball so hard it goes over the fence.” “To attend the opening NY Jets game and meet Eric Decker.” “To be a wide receiver for the Panthers.” Each Dream Experience also has a sendoff. The send off is usually a surprise, and we gather the child’s friends, family, and healthcare givers, at a location such as the child’s favorite restaurant. For example, last year we surprised Dream Kid Alex at her Friday night HS football game by driving a limo onto the field at halftime. Our biggest goal is to show that child that they have their own team/support system pulling for them.

Once a Dream Kid and their family have a Dream Experience, they become part of our DO3 Family. There are several Dream Kids and families that we get together with, celebrate milestones with, and come together for hardships with. What’s cool, is that these families are bonding with each other as well! For example, we went to Dream Kid Nicholas’s (who has autism) birthday party earlier this year and were amazed to find that two other Dream Kids (with autism) and their families were also there!

Last year we started the “Nicholas Thornton Scholarship Fund” in honor of one of our Dream Kids who passed away before his Dream. Nicholas believed that the power of education was the necessary tool to unlock any door. This fund was started a little over a year ago & we have raised $3,000 so far. When our Dream Kids come of age to apply for college, they are also eligible to complete a scholarship application.

Stacey: Why sports?

Shannon: Are you a sports fan or have you ever played on a team? There is just something about the camaraderie and overcoming your obstacles that is powerful. I like to answer this question with a quote from Nelson Mandela- “Sport has the power to change the world,” Mandela said. “It has the power to inspire. It has the power to unite people in a way that little else does. It speaks to youth in a language they understand. Sport can create hope where once there was only despair.”

Stacey: You’ve hooked up with some heavy hitters in Charlotte. Why are these partnerships important to you?

Shannon: With the idea of the community and local businesses coming together to make these Dreams come true, our partnerships are everything! Levine Childrens, The Arc of NC, Novant Hemby Children’s Hospital, DDR, inc, and Jeff Gordon’s are our 5 current referral partners. They are the ones bring us our Dream Kids. Other partnerships such as the Touchdown Club typically have similar passions that align, and we support each other in various ways. For example, we started our “Day Dream” program in hopes of creating positive sports experiences for children who may not otherwise qualify for a Dream Experience. This year, we have been able to bring two children from each referral partner to each Touchdown Club luncheon.

Stacey: Do you have plans to expand outside the Charlotte area?

Shannon: We sure do! We are in the beginning stages of our expansion to Atlanta. Once our Atlanta office is settled, there are several other cities we intend expanding to.

Stacey: I have a child with type 1 diabetes and while life can be difficult, it is manageable. My son will (hopefully) have a long and happy life. We tell him diabetes can’t stop him. Why do you think it’s important for these kids to have special experiences? This is not Make A Wish where the children have a terminal illness.

Shannon: I love that you said you tell your son that diabetes can’t stop him. That is exactly what we like to show our Dream Kids! I recently had the opportunity to help lead one of our Dream Experiences. The child is an 8 year old boy born with Neonatal Abstinence Syndrome, which resulted in him having a global developmental delay and ADHD. He struggles with behavioral issues largely as a result of feeling different and unable to do what his peers are able to do. I was able to witness first hand as he gained a confidence that his Mom said she had not seen before. He spent the day with the Yankees at spring training and they made him “one of the guys.” His mom told me that this was an experience she felt would change the course of his life for the better.

While we have Dream Experiences for children with life threatening/terminal illnesses as well, we open the opportunity up to other children who are not usually eligible for other wish granting organizations. These children have been given something that (most) other children don’t have to live with. In our Dream Experiences we aim to give them hope and inspire them to continue believing that they can do anything they set their mind to. And so far, our Dream Kids, and their families and healthcare providers are confirming that its working!

"Dream on 3!" Sam Parker and his family meet Jay Cutler.

“Dream on 3!” Sam Parker and his family meet Jay Cutler.

Stacey: How does someone qualify and apply?

Shannon: We are currently partnered with five different hospitals and/or organizations within the Charlotte, NC area (listed above). These five facilities, along with their social workers and administrators, are our source of contact and information for possible dream recipients. We must follow certain protocol in order to obtain our recipients as well as ascertain their medical eligibility to be involved in sports experiences. Therefore we are only able to receive our recipients and their information through these hospitals/organizations, and not through online correspondence. If a child receives services through one of our referral partners, they can speak with their child life specialist/doctor/caregiver about sending in an application.

Stacey: Where do you get funding?

Shannon: The majority of our funding currently comes from corporate sponsorships and in kind donations. On average, our in-kind donations cover about half of the expenses of our Dream Experiences. We have an annual Dream Gala which raises a large portion of our annual operating budget. This year, we have been working to get each Dream Kid a “Dream Sponsor,” where a company or organization donates $5,000-75000 to cover the portion of the Dream Experience that we don’t get from in kind donations. Other funding comes from various fundraisers, such as 5ks and our Annual Crossfit Charity. This year we are launching a 24-hours of giving campaign called #DO3BeginsWithMe. On October 1st, we will be asking donors to help us reach a goal of 1000 people to donate at least $10 before the 24 hours is up.

Thanks, Shannon! You can learn more about Dream On 3 here. Read more about T1D Dream Kid Sam Parker’s meeting with NFL player Jay Cutler (who also has type 1 diabetes) here.  Best of luck to DreamOn3 as they move forward with fundraising and helping more kids!

note: this interview was conducted via email and has been edited slightly for space.

Diabetes Connections – Teenagers

Teenagers are special to begin with. Throw diabetes in the mix and you’ve got what my guest this week calls a “challenging time.” Moira McCarthy has a way with words and she offers great, realistic advice.

McCarthy is the author of Raising Teens With Diabetes: A Survival Guide for Parents. She speaks frankly about the struggles she and her daughter faced, after years of being a “model” diabetes family. You’ll also hear from an adult with type 1 who looks back at her self-described rebellious teen years and has some advice for kids and parents. Plus, what I learned recently about talking to my ten year old that I hope will help in the “challenging” years to come:

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raisingteenscoverHelpful links:

Raising Teens With Diabetes (Amazon page)

Moira’s blog post, “Our DKA Story (The one I’ve never told the world before. And the one that scares me to share)”

Children with Diabetes Friends For Life (and other conferences)

 

Diabetes Connections is now on Facebook & Twitter! (click to like or follow)

Please subscribe and leave a review. What would you like to hear?

Diabetes Connections – Teenagers

 

This week, I talk to Moira McCarthy, author of Raising Teens with Diabetes. Moira also.. blah blah.

And you’ll hear from a woman who was a self-described rebellius teen. She’s now in her 30s, but it took her a long time to turn things around. And I talk about the one thing I learned recently that made me feel better about heading into the teen years with my now-ten-year-old son.

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Helpful links:

Moira’s book

Column at Sweet Life about DKA

 

Diabetes Connections – Nightscout

I’m just back from the Children With Diabetes Friends For Life conference, where wrist bands play a big role. People with diabetes wear a green bracelet, those who love them wear orange. It’s incredible to look around a Disney World resort, see hundreds of people wearing these bracelets, and realize we’re all in this together.

This year, there were a lot of people wearing a new kind of bracelet, a Pebble watch. That’s because of the Nightscout Project, which allows real-time remote blood sugar monitoring to a Pebble (or a computer, tablet, smartphone – anything that can access the internet).  It’s an open source project that came on the scene in 2013 and continues to grow at astonishing speed.

The Nightscout folks were explaining the concept and helping people through the installation at Friends For Life. While there, I spoke to Kate Farnsworth, part  of the Nightscout Faculty at the conference and James Wedding, president of the Nightscout Foundation:

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Helpful links:

The Nightscout Project

The Nightscout Foundation

Subscribe to Diabetes Connections on iTunes (please leave a review!)

 

Missed FFL?

yeah it was great, but its expensive and it rains and it’s crazy

couldn’t come? go through the hashtag and pick and choose new people to follow and learn about

dpac

joe solo

gary shcneir

bionic pancreas.

here’s the agneda. what interestes you? look at master lab periscope, read a few blogs find out what’s in your area.

get involved (listen tothe podcast….)

Diabetes Connections – Friends for Life

This week I’m double dipping. I’m attending the annual Children with Diabetes Friends For Life Conference and I’m also making that the subject of the latest episode of Diabetes Connections. #CWDFFL is the largest family diabetes gathering in the world. It’s unlike any other conference I know.

On the podcast, you’ll hear from Laura Billetdeaux, VP of Education and Programs for Children With Diabetes. She sparked what became Friends For Life sixteen years ago when she got on a CWD chat room and asked if anyone wanted to meet up during her family’s vacation in Florida. More than 500 people showed up and it’s grown every year since then. Billetdeaux is quick to point out that many people are responsible for organizing and pulling together the conference and many other events each year. But she raised her hand and got it started.

I’ll also talk  about my experience at Friends For Life and you’ll hear from a mom who couldn’t find the support she wanted when her son was diagnosed with T1D as a toddler. She shares how she created the kind of group she wanted to join.

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Helpful links from this episode:

Children With Diabetes website

Children With Diabetes Friends For Life (event page)

 

Diabetes Connections – Camp!

This week’s episode is all about camp. Mostly diabetes camp, but a little bit about “regular camp” as well. I spent almost all of my childhood summers away; camp was independence and fun and a chance to find out who I was, away from my parents and school friends. I’m so happy and grateful that both of my children can share that experience.

You’ll hear from Justin Thomas, the director Camp Carolina Trails, run by the American Diabetes Association and from Galen Horton, a staff member at CCT who works with Animas Corp. Both men were campers in the program once upon a time  and have a lot to say about why the experience is so meaningful. This summer marked Galen’s 30th at Carolina Trails!  You’ll also hear from a once-reluctant camper who turned her experience around and has loved it for nine years. Sara is going to Camp Kudzu as a Counselor-In-Training this year. And I share some information about my son’s time at “regular” non-diabetes day camp and sleep away camp.

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Helpful links:

American Diabetes Association camp finder

Project Blue November diabetes camp guide

Sara (the camper you hear from) is starting a campaign to find positive diabetes support for teens. You can find out more on her blog or contact her through twitter @meow_its_sarah It’s a great idea!

Diabetes Connections is now available on iTunes, Google Play and wherever you find podcasts. Please consider leaving a review and subscribing. Thanks!

Blergh

I know, I know.

Even after eight years, we all make mistakes. Hindisght is 20/20 There are so many vairable with high blood sugar. Blah blah blah.

B came home from diabetes camp happy and bursting with PMA (positive mental attitiuge, this camp’s speciality). His meter told me his average BG for hte week was 135. That’s pretty fantastic for oour growing boy. Of course, the next two days at home, he was in the low 200s. And then slowly climbed the next few days until his BG avergage for the 7 days after camp was 288.

We changed sites, but he came down enough so that it didn’t seem to be the case. He was sitting around a lot, but last week we hit 100 degrees almost every single day. Too hot to even go swimming for more than an hour or so. And he’s alwasy growing. So there were ltos of reasons. And the insulin obttole we were using was the same one he ceom with from camp with. I started changing out the carrteide every two days instead of three thinking maybe it was just too close to his body? who knows.

Finally, we reached the end of the insluin bottle and I cracked open a new one. At 11pm, dude went low for the first time I can remember, deinitely before camp.  Then he stayed just below 100 the entire night. The insulin, of course!!

I’m writing this and then I’m done beating myself up. I told B we’d figure it out (like we almost always do witih extended highs like this, the radnom ones I sometimes just have to chalk up to the moon or bad juju) and he didn’t care. I tell him as long as he’s checking, treating and not secretly eating we’ve got nothing to worry aobut. But man, I’m so mad.  Why didn’t I just think of the inuslin?

This happened last summer after his regular cmap as well. There may be somethig about he mahic of camp. Insuling hta tworks there just doesn’t work as well at home?

Oh well.. bring on the next diabetes mytery.