An Open Letter to the Parents of a Child Newly Diagnosed with Type 1 (Autoimmune) Diabetes

This is the face of a child with Type 1 Diabetes

I was sitting by myself watching Austin play in a basketball game when a friend approached me with a fervent purpose and look in her eye that I've come to know as meaning only one thing. My reaction was visceral and like a reflex response, I deferred to general pleasantries in my attempt to delay the inevitable. 

Each time I hear of a new Type 1 diagnosis my heart breaks, my stomach sinks and I find myself holding back tears. A few days after hearing my friend's story of her nephew's diagnosis, I shared with her this open letter to the parents of a child newly diagnosed with Type 1. I wrote this letter some years ago in response to the news of a new diagnosis. I'm publishing it here in the event it can bring a calm and peace -- even if for a fleeting moment -- to the mom or dad who has just been told their child has a disease for which there is no cure. 

I am so sorry your child was recently diagnosed with Type 1 Diabetes. You don't know me but I know how your world has been turned upside down by this diagnosis. As a mom who experienced the same diagnosis, I can reassure you that your child will be okay. In fact, he is going to be a stronger more mature and empathetic child because of the experience he has living with Type 1. 

Though you may not think so today, you too are going to be okay. Your grief over the loss of your 'healthy' child will subside; your feelings of fear and anxiety will be replaced with confidence; and your guilt will be reconciled.  

In fact one day you will discover a gem that is only revealed because of this experience that today fills you with raw emotion. It will likely take months, maybe even years but it will happen and when it does you will accept why your child was allowed, by a loving God, to live with Type 1. 

Stay strong. 

The Gem in the Journey

One of the most joyful discoveries on this journey has been the realization that I can help other D-moms who are on a parallel path to raise a DAD for their children. For much of our journey, I have been a recipient of other D-parents' gifts of guidance and encouragement. Recently, I have had the opportunity to share what's worked and what hasn't worked, and what we've learned from others, as well as what we've discovered on our own. Being in a position to share what I've learned on this journey for the simple sake of helping another D-mom has truly been the gem in the journey. 

Determining if an Alert is Ahead of the Meter or False

Bo leashed-up with Austin.

This morning while Bo was leashed-up (tethered) to Austin downstairs, I heard Bo whining. I stood near the top of the staircase and listened for a minute. His whining was persistent. Austin told me Bo was not alerting to him but knowing whining can be a pre-cursor to an alert, I asked Austin to unleash Bo. I wanted to see if Bo would come to me and alert. No sooner had Austin removed the leash and Bo had found me in my room and alerted.

I checked Austin and he was 123 -- an in target range number. Austin had insulin on board that was working on breakfast carbs he had recently consumed. Given this information, it would appear Bo's alert was false as opposed to being ahead of the meter. However, two hours earlier Austin had been playing in a basketball game. We know exercise has a delayed effect on blood sugar, so it was possible that his blood sugar was trending down. Like we always do when Bo alerts outside his reward thresholds, we told him were were going to watch. Austin leashed back up with Bo and I took a seat on the couch next to them. Twelve minutes after his first alert, Bo broke place and came to me on the couch to alert. This time Austin was 87.  I rewarded Bo, gave Austin a 17 g (uncovered) snack had Austin leash-up again with Bo before I went back upstairs. 

Not long after leaving them, I heard Austin telling Bo 'all set' and 'we are going to watch.' This didn't make sense, as we were not watching. I called to Austin asking if Bo was alerting to him. He said he was and he thought we were watching. (This is what can happen when you have a 12-year-old boy who is immersed in a video game with his friends.) I went downstairs to re-check and Bo greeted me with another alert. This time Austin's blood sugar was 70. It had been 17 minutes since his alert to the 87 and since Austin had eaten 17 g of carbs. Our pup was smelling a downward trend in Austin's blood sugar. 

I've learned it's important to watch false alerts to determine if they are in fact false or if they are ahead of the meter. Our criteria for qualifying an alert as being ahead of the meter is a blood sugar in reward range within 15 minutes or less from the time of the original alert that was out of reward range. Typically, Bo re-alerts within 10 mins of his first alert when he is ahead of the meter. 

Do you have a process for watching false alerts? What does your process look like? What are your criteria for determining if an alert is false or ahead of the meter? 

New Book about Life with a DAD Coming this Summer

Elle & Coach: Diabetes, the fight for my daughter's life, and the dog who changed everything by fellow D-mom and DAD owner, Stefany Shaheen is sure to be a heartfelt and inspiring story that will raise awareness of Type 1 (Autoimmune) Diabetes and the difference Diabetes Alert Dogs make in our lives.

Elle & Coach will be available in bookstores August 2015. It's currently available for pre-order at Water Street Bookstore and RiverRun Bookstore, as well as on Amazon.com. The list price is $27 and a percentage of the proceeds will support Type 1 Diabetes research.

I pre-ordered a copy through Water Street Bookstore and learned Stefany is signing and personalizing books.

You can follow Stefany on Facebook and Twitter, as well read about Coach and Elle on her Counting on Coach Facebook page and blog.

I invite you to 'Share' this post on your social media pages to spread the news about what's certain to be a story that raises awareness of Type 1 and the benefits of specially trained Diabetes Alert Dogs.

One of the Most Useful Pieces of Training Advice I've Received

One of the most useful pieces of advice I received on my journey to raise and train Bo was to limit verbal cues to one or two word commands and to avoid adding the word it to the end of commands. The idea being the fewer number of words to discern within a command, the faster the dog will learn, recognize and interpret the command. I received this advice early in our journey and it has influenced how I choose the words for verbal cues. 

The following are the verbal cues we use with Bo and the behaviors they represent:

Take: Used to direct Bo to use his mouth to take an object from any number of places including out of our hands.
Get help: Used by Austin to send Bo to bring a person back to Austin.
Go sniff: Used to prompt Bo to use his nose and smell. 
Spin: Used to prompt a circle motion.
Back: Used to prompt two to three steps backwards.
Sit: Used to prompt Bo to have his tail-end on the ground or floor.
Down: Used to prompt Bo to have his underside on the ground or floor.
Stay: Used to prompt Bo to remain in one place.
Drop: Used to prompt the release of an object from Bo's mouth.
Bring it: Used to prompt bringing a retrieved object to us. (I do use the word it with this command)
Leave: Used to prompt Bo to turn his head away from an object, person or animal.
Wait: Used to prompt a temporary pause in action that's followed by eye contact.
Under: Used to prompt going under a table, bench or other object.
Touch: Used to prompt Bo to hold his nose on our hand.
Load up: Used to prompt the motion of jumping to get onto or into a higher surface. (i.e., into a car or onto a raised scale at the Veterinarian's office.)
Bump: Used to prompt Bo to bump his nose on our body or on an object.
Try again: Used as a non-reward marker to indicate a behavior given is not the desired behavior. (It's important to note 'try again' is not an aversive, it is never followed by a punitive act or reprimand. )
One: Used to prompt voiding urine.
Two: The opposite of one.
Come Bo: Used to call Bo to us. (I strive to reserve the come command as the only one that I couple with Bo's name.) 

Without making a conscious effort to use one or two word commands, it's easy to fall into a habit of adding additional words. For example:

• Take your Kong;
• Bo go get help;
• Spin around;
• Back-up;
• Sit down (the combination of two separate commands);
• Lay down;
• Stay there;
• Drop it;
• Bring it to me;
• Leave it;
• Wait a minute.

What's one of the most useful pieces of advice you've received related to training your dog?

Video: Re-Alerting

Austin doesn't have a Continuous Glucose Monitor (CGM) to tell us what direction his blood sugar is trending. This means when Bo gives an alert outside his low and high reward thresholds, we don't have a way of knowing if Bo is alerting to an impending low or high or if he is giving a false alert. To rule out a false alert, whenever Bo alerts outside his reward threshold, we wait 10- 15 minutes and re-check Austin.

We call this waiting period 'watching' because we watch Bo for a re-alert. If Bo re-alerts within 10-15 minutes and Austin's blood sugar is in Bo's reward range, we consider the alert valid and reward Bo. If after 15 mins it's still outside his reward range, we consider it a false alert and we put Bo on his place.

Tonight at 7:15 pm, Bo alerted 12 minutes after Austin gave himself a post meal bolus. (This means he gave insulin after he finished eating rather than before he started eating.) We checked and Austin's blood sugar was 136; he had 8 units of insulin on board that was working on the 120 grams of carbs he had just consumed. I told Bo we would 'watch' and put him on place to the left of Austin. (As seen in the above photo.)

After just 8 minutes Bo got broke place and re-alerted to me. Again, I told him we were going to watch and put him back on place. At 7:30 pm, exactly 15 minutes from his original alert to the 136, Bo re-alerted. When we checked, Austin's blood sugar was 209. (This number is within his high reward range of 173-220, so Bo got rewarded for the alert. The pup was ahead of the meter.)

I captured the re-alert in the video below. You see Bo break place to come and alert. He also barks when I ask, 'what is he?' It's important to note barking is not part of his alert chain and is not a desired behavior.