Today, we’re thrilled to welcome California D-Mom Dorrie Nuttall to the ‘Mine to share her family’s story about her son Luke, diagnosed with T1D at age 2 back in September 2011, and the Diabetes Alert Dog who changed their lives. As huge Star Wars fans, they decided to name the cuddly black lab Jedi!
Among other advocacy efforts, this L.A. area family is promoting a new film called Luke and Jedi to raise awareness about diabetes and D-Alert Dogs (DADs) in particular.
As this week happens to be National Pet Week, it’s a perfect time to feature the Nuttall’s passion about how these “working animals” (rather than traditional pets) are still a beloved part of the family. Without further ado, take it away Dorrie…
“Luke.. come here, Honey. Let me help you.”
I called out to the living room, as I heard him let out this frustrated scream that I had been hearing more and more over the last few weeks. “He’s just two,” I told myself. “He only has a handful of words and he’s frustrated, he’s still learning to communicate.” As he walked into the room in tears, I scooped him up and put him on my lap. He slumped back and continued to cry as I tried to help him put his foot into his shoe. This crying felt different, but I tried to ignore the nagging feeling that something else was wrong.
Later, at 2 a.m., I heard Luke screaming from the crib. “BA BA!” I swept him up and rocked him with a bottle hoping he’d go back to sleep, but the bottle was followed with more screaming for water. I filled the bottle with water and moved him into our bed between us, where I quickly noticed his diaper was leaking. He requested another bottle of water and before he was even done, his new diaper was soaked again.
Luke finally cried himself to sleep.
In the morning he looked fine. I told the doctor I thought he may be getting sick but because we had a friend’s son recently diagnosed with type 1 diabetes, I emphasized the night of crying and drinking and wet diapers, and we agreed that a finger prick was warranted. I held Luke while they did it, feeling guilty for a second that I had pushed for this test…because it was probably going to be nothing.
The doctor walked in, and as soon as I saw his face I knew this was something.
“Your son has diabetes. His blood sugar is 698. I need you to take him to the hospital. Now.”
That was the day diabetes entered our life.
Fast forward past the crash hospital course on how to be our toddler’s pancreas. A year of trying to find our new normal. A toddler who didn’t understand what was happening, who hid from us when it was time to eat because he knew a shot was coming. Sometimes just seeing us walk into a room would cause him to run. He’d often wake up crying, saying that bees were attacking him, and I’d rock him back to sleep with tears in my own eyes. It seemed hard to believe that there was no end to this… that this was our new normal and that this was forever.
Rethinking Education, via Diabetes
If I were a doctor or a researcher, I would be in a lab doing work to help find a diabetes cure. But I am not.
Instead, I found a way to use my profession as a college professor to try to make a positive difference. I teach child development, with a strong emphasis on brain development and how children learn and grow through play and responsive caring relationships with people around them. It is in the context of these relationships that children form their identities and personalities. I also focus on reflection and the power of thought and expression and perspective-taking. I take the stance as an educator that if someone doesn’t understand something, the fault does not necessarily lay in them… but often in the method of information delivery itself.
Eventually after Luke’s diagnosis, I started to connect my passion for rethinking education to how I felt about diabetes awareness. I felt like much of the current awareness strategies weren’t working. I thought back to anything I may have seen that taught me about type 1 prior to Luke’s diagnosis, but couldn’t think of anything. I would always hear people say that others cannot get it unless they live it… so I thought maybe sharing our lives openly and honestly may be as close to that as we can get. We had to find a way to connect with people who weren’t actually living it.
Of course, my own story growing up is as much a part of this as anything else.
My brother went into kidney failure when he was 13, from an undiagnosed infection that destroyed his kidneys. We had a dialysis machine in our house. I watched my mom hook him up to a port every night. The whirring and beeping of machines and tables covered with alcohol swabs and needles and medical supplies often came rushing back to me when I’d prep for a pump site change or prepare a syringe for Luke. When I was 18, I started the process of donating my kidney to my brother. It’s been 21 years since the transplant. I am healthy and have had four children with only one kidney. The lack of kidney donations stems from misconceptions that dialysis is a cure and that donating a kidney is more dangerous than it really is. It is all so misunderstood. Much like type 1 diabetes. Often in the middle of the night I would be left thinking about the irony of it all. How lack of awareness and negatively affects so many.
That’s what put me on the path of diabetes awareness.
At the hospital on the day of diagnosis, I was handed a syringe and told that I’d have to give Luke a shot. When I protested, “I can’t, I don’t want to hurt him (!),” someone in the room told me that although he would cry and he wouldn’t like it, that the shot would save him. So I named our Facebook page “Saving Luke,” and that’s where I started to document our daily lives.
About this time, I started to research Diabetic Alert Dogs. Luke loved dogs and we were an animal-loving family. I thought maybe a dog could help us.
Finding and Training a Diabetes Alert Dog
The first service dog company I found told me what I wanted to hear, they promised me the moon. But they were starting to have issues with unhappy clients and poorly trained dogs and other red flags came out, so I decided to leave that company. I was disheartened. I felt taken advantage of and lost.
Luckily a friend connected us to a local organization called Canine Hope for Diabetics. They interviewed us and gave us a lot of information on these dogs. They told us that having a service dog isn’t for everyone — it’s a lot of work and often means more testing and focus on diabetes, as the dogs aren’t perfect and can miss alerts. This company told us they would help, but there weren’t any guarantees that our puppy would make it past the service dog “prospect” point. We learned that roughly 50% of the dogs that start the Canine Hope training end up being career-changed or removed from the program, unlike others (and the first org I turned to) that placed every single puppy in a home and deemed them as service dogs no matter what.
Canine Hope didn’t try to “sell” me a dog, and their honesty was refreshing. I suddenly felt in good hands and was very hopeful again. Most puppies place after 18 months of training, and in our case we were selected as “guided self trainers,” meaning they’d train us to train the puppy and help advance the concepts and obedience that is the foundation of service dog work.
That’s where we met Jedi.
After a few play sessions with the puppies, Luke was placed with a red collar puppy who seemed to have enough drive to hunt blood sugars all day but also relaxed enough to wait if nothing was happening. Luke and his brothers named him Jedi, because we’re huge Star Wars fans of course. Jedi came home to us at 11 weeks old, and the training began… and it has never ended.
Jedi was with us at every blood sugar check. We trained him to paw and bow on command. Then we paired the paw with high scent and the bow with low scent. We would ask him to preform those behaviors when Luke was high or low. Jedi started to recognize scent at about four or five months, and then started alerting independently about nine months here and there.
By the time he was a year old, he was alerting consistently on his own. A lot of work went into making those alerts happen. Every finger poke that could have lasted 30 seconds lasted 5-10 minutes as we worked Jedi through the alert and properly rewarded him. We also went to weekly training sessions to learn how to handle a service dog in public and strengthen his obedience and focus, which is the foundation for strong alerts. We learned how to keep their tail safe from shopping carts and in crowds and a million other little things I never even thought about when I decided a service dog was right for us. Canine Hope also taught us all about the Americans with Disabilities Act (ADA) service dog laws and how to deal with public access issues in a world where many people don’t understand the rights or different types of dogs.
Jedi is a service dog because he performs a task for a person with a disability, that they cannot do themselves. (Diabetes is considered a disability, which is why these diabetic alert dogs are protected under ADA law). Jedi is trained to alert to both high and low blood sugar and get help if needed. He can also bring Luke’s meter or juice box to him. Service dogs have public access rights to be anywhere the general public is allowed.
Service dogs don’t need to wear vests, but we put one on Jedi because it just makes things easier and the “do not pet” patch keeps people from distracting Jedi from his job. Businesses are often not informed and afraid to ask questions. Even some animal handlers don’t understand the laws themselves and it often ends up being a very confusing and sensitive topic. As a result, there are many issues with dogs out in public that can make public access somewhat stressful.
Still, our dog is more than a pet and a service animal, he is part of our family.
Raising Diabetes (Dog) Awareness
One night a few years ago, I posted about a night alert where Jedi caught a fast drop and subsequent low blood sugar. I’ve done that same thing a thousand times before… but this time, something unexpected happened. I woke up to thousands of shares and thousands of comments and the media calling me — CNN, Dateline, Inside Edition, Huffington Post, National Geographic, even the Ellen show who said they appreciated our efforts to raise awareness.
People were intrigued about a dog that could do this.
Some of the media outlets spoke to me directly and when they did I gave permission to tell the story if they listed the T1D warning signs, and I also made sure they explained that this is an autoimmune disease not caused by eating sugar or poor lifestyle choices. My post now has over 50,000 comments and millions of likes and shares.
I started to believe our story was making a difference. Soon I started to get emails from people who read our story and followed the links to warning signs and recognized the symptoms in their child or loved one, and thus got a proper diagnosis. To date, dozens of people have contacted us to say they learned of the warning signs in one of our articles or posts.
As a part of this, we’re raising awareness about Diabetes Alert Dogs (DADs) which are a relatively new practice in the broader world of service dogs. Seeing as how 15,000 children are diagnosed with T1D every year, Luke and Jedi are setting an example for what is expected to become a useful medical tool. We’ve teamed up with filmmakers to create a documentary film, focusing on the bond between Luke and Jedi as we follow our journey with type 1. Our hope is to educate audiences on the fascinating process behind how these DADs are trained, as well as promote T1D awareness.
We finished the film earlier in the year and just recently had the first screenings in Pasadena, CA, and College Station, TX, with sponsors being Dexcom and Beyond Type 1. We plan to do more theater screenings during the rest of 2018, and expect to release the film on Amazon Prime and iTunes probably in 2019.
I believe that if we attempt to be open and honest about all aspects of diabetes, people might have an easier time trying to understand. If telling our story can help, I will continue to do it, because every effort makes a difference. I believe that finding ways to make connections can open avenues for conversation and increase compassion and support for everyone living with type 1.
Wonderful! Huge thanks to Dottie and the Nuttall family, including Jedi the DAD himself.