Frank Wisneski told his inspiring DAD story at Wildrose during the conference kickoff. It was a brutally authentic portrayal of life with a DAD and, coming so early in the conference, helped frame the entire weekend for me. He posted a transcription at his excellent blog which I highly recommend:
http://blackdogsrule.com/my-talk-at-the-wildrose-dad-conference/
He also took many excellent photographs from the conference and managed to catch this one of me and Mya.
Describe what you see when you look into a kaleidoscope. Twist the end. Describe how the sparkling colors change, patterns emerge and evolve, and symmetry shifts. That’s the task before me as I try to describe my first Wildrose DAD conference.
Several years ago Rachel Thornton, a mom from Mississippi, came up with the idea of training a dog to help her daughter, Abi, manage her newly diagnosed diabetes. She painstakingly laid the groundwork for the rest of us to follow and she leads us still at her invaluable forum DiabeticAlertDog.com. In 2009 she started what has become a yearly tradition: the Wildrose Diabetic Alert Dog Conference, hosted by Wildrose Kennels in Mississippi with whom Rachel works closely. Each conference brings together existing DAD teams, trainers, teams in training, and people looking to find out more about DADs.
For me, it was two days filled with inspiration, disappointment, deeply moving stories, self-doubt, and thrilled exuberance. That’s a lot of emotion packed into 48 hours. My task over the coming days is to unpack and assimilate the experience into a new understanding of this journey I’m on and, hopefully, find a way to express it in this crude instrument called language. This will take some time.
The first story I want to tell is, perhaps, the most important experience I’ve yet had on this journey and definitely the most valuable.
It was early Friday morning. Everyone was sitting in chairs in the meeting center listening to Rachel inspire us with the heart-wrenching tale of her daughter’s diagnosis and early struggles with type 1 diabetes. Brenda, who I interviewed on the blog a few months ago, was sitting about ten feet away. Her diabetic daughter Laura was outside somewhere – out of sight and with all the doors closed. Their DAD, Daisy, lay asleep by Brenda’s feet. (Children with DADs often take breaks from each other and the parents take control of the dog.) Suddenly Daisy stood up, sniffed aggressively at the air and gently placed her paw on Brenda’s leg. Brenda looked down and asks, “Are you sure?” and Daisy repeats the movement. Seconds later, Laura coincidentally entered the room from outside and makes her way to her mother’s side. When she reached Brenda, her mom tells her to check her blood which she does.
You can guess what happened next – a big dog party! Lots of treats for Daisy, lots of praise and petting and Daisy is allowed to hold her beloved tennis ball for a while before settling down.
I don’t think I can describe all the emotions I felt. It was an extremely powerful moment and I felt privileged to be able to watch it unfold. I’m not afraid to say I got choked up and even now as I write this on the plane back to Boston I’ve got a sniffle just thinking about it. Prior to this I understood this amazing thing that DADs can do but it was an intellectual understanding – I hadn’t internalized what it meant to people’s lives. I’ll admit my emotional pump was primed that morning when I entered the building and saw an adorable little boy wearing a Superman cape. He couldn’t have been more than three. I said, “Hey Superman,” and as he turned I saw a pump identical to mine attached to his belt, looking absurdly large on his tiny body. The unfairness and cruelty of this disease hit me like a brick, with a deep sympathy for what these parents must experience on a daily basis.
Fast forward to Saturday afternoon. I was in a different meeting room with chairs spread around. Scott and three other trainers were observing Mya to see if they could figure out the source of her anxiety and come up with a plan to help her through it. This particular room was a scary place for her. We can never know what terror she was envisioning in her head but she was obviously distraught which is why we chose that room to observe her – something about the wood floor was not to her liking. Suddenly she started sniffing – no, snorting – very aggressively and walked over to Scott, smelling him all over. Mya then grabbed at the bringsel Scott always has hanging from his belt and tugged until he unclipped it and let her have it. She walked directly to the chair where I was sitting, thrust her head between my knees and dropped the bringsel into my lap, then sat at my feet with her entire rear-end wagging and a look of absolute satisfaction on her face, as if she was saying, “Look what I just did!”
My instinctual reaction was doubt. Over the years I’ve evolved something I can best describe as a subconscious risk meter that is always running in my head. It measures the degree of confidence I have that I know my current level of blood glucose. When I check my blood or eat a meal the risk meter is reset to zero. As time passes the risk meter goes up at a rate that varies with the kind and quality of food I have eaten and my level of physical exertion. This has served me pretty well and is a constantly evolving model. At that moment I felt confident that I was normal or high – it was only two hours since lunch for which I hadn’t needed much insulin and I had recently had a snack. I had checked my glucose only thirty minutes prior and was at a pleasant 98 – right in the middle of my target range of 85-120.
I stood up and checked my Dexcom CGMS and it said I was steady at 80 and had been steady all afternoon – no drama whatsoever. But if I trusted my Dexcom completely I wouldn’t be here – my internal system for recognizing highs and lows is dangerously imperfect and the Dexcom, while useful, has not protected me from some terrifying highs and lows. I pulled my glucometer from my backpack, pricked my finger, and applied a drop of blood. It read 57. I had just experienced my first DAD alert.
I was grateful for the need to praise and reward Mya because it made me focus outside of myself. But inside I felt like a ship tossed in a storm. I so often tell myself that I am in excellent control of my diabetes, and maybe I don’t really need a DAD – maybe I’m pursuing this for the wrong reasons. All doubt evaporated at that moment even as tears came to my eyes. The truth is that my grip on glycemic control is tenuous and hair thin. I work really hard at it – to the point of obsession. I get the best tools, I constantly refine my risk model, I eat very carefully. I was so sure I wasn’t low and I was prepared to tell everyone that this was a false alarm. I hadn’t even considered the possibility that I might be low – certainly not THAT low.
Hello. My name is Dave, and I can’t always control my diabetes.
The Dexcom never even alerted. The alarm is set to go off at 75. If I set it any higher I get so many false alarms that I start to ignore it. I chewed some glucose tablets and ate some gorp that I always keep handy and my glucose quickly recovered. The graph on the Dexcom showed not even a blip – it was a perfectly straight line like nothing had happened at all. The fact that in just 30 minutes I had dropped from 98 to 57 tells me that, had Mya not alerted, I would probably be in the 40s before the CGMS caught wind of the low and finally alerted me. What if I was in the middle of the woods, alone on a long hike? It could happen. It *has* happened.
This is the first gift bestowed upon me by the 2013 Wildrose DAD conference: resolve. I resolve that next year I will return to Wildwood with my own DAD where, for two days, my journey will merge with the journey of others like me and I will return home fulfilled and inspired.
There are so many more stories to tell from the weekend: meeting and spending time with Mya, getting a chance to meet and talk with DAD teams I only knew through Facebook, working with Scott and other trainers to understand Mya’s anxiety. There is much to tell – stay tuned!
A little over a month ago I got a call from my trainer, Scott. Mya had been demonstrating some behavior that had him concerned about her viability as a service dog. Specifically she was showing signs of anxiety in new or highly stimulating situations. Two triggers he mentioned were dense crowds of people and shiny tile floors. We talked about some possible root causes of her anxiety which included psychological trauma from her spaying, an early second-fear period (dogs go through two or more major “fear” periods in their early development), or a unknown medical problem. Either way he needed to slow down her training to avoid overwhelming her and risk making her anxiety permanent. He said there was also a chance this might be a temperament issue and she could turn out to be a poor candidate for service work which would mean starting over with a different dog. I know Scott felt badly having to tell me this but I appreciated his concern and professionalism.
Mya – lounging by the fire with her treat ball.
Needless to say this was a sad day . All my plans and hopes were suddenly put on hold. I had to take down the paper-ring chain that my youngest son and I had been trimming each day to help him (and me) manage our excitement for Mya’s homecoming. In the weeks that followed I distanced myself emotionally from my hopes for Mya and focused on day-to-day activities. Scott promised to give Mya a little more breathing space and slowly reengage her training in hopes that she just needed more time.
We’ve been in touch several times since then and our optimism has gradually grown. Scott has seen definite signs of improvement in Mya and feels confident that she will be able to overcome her issues with time and patience. He has been gradually exposing her to situations that challenge her – a process that will continue after I take over as trainer. At this point we don’t yet have a specific date for when Mya will be ready, but hopefully she will continue to improve and we’ll soon be able to celebrate her first homecoming.
On May 2, I’ll be traveling to Oxford, Mississippi for the 2013 Wildrose Kennels Diabetic Alert Dog Conference. This is a yearly event run by Wildrose Kennels and provides an opportunity for the small DAD community to gather, inspire, and learn from each other. This will be my first year attending and I’m really looking forward to it. Scott will be there along with many other trainers and people I’ve met online but never in person. Most importantly Mya will be there and I’ll get to meet her for the first time and spend lots of time getting to know her and learning how to handle her. You can bet I’ll have something to blog about when I get home!
Mya alerting Scott to a low (76) by grabbing the bringsel.
It sneaks up on me every year: that day when I realize that winter has lost its grip and the early dawn of spring is on the horizon. The morning can be bitterly cold, and the snow fresh and deep but I’m overwhelmed with a sudden awareness that the season has turned. It’s a wonderful feeling of renewal and optimism that catches my breath every year. It’s a darn good thing that moment is so powerful because it has to last me through the remainder of what is typically 10 weeks of wet gray ground and sky.
The long wait for spring has begun, and thus begins the long wait for Mya. The training schedule has been expanded a bit and our current plan is for her to be ready mid-April.
It feels very much like the third trimester before my eldest son, Tyler, was born. Cathy and I had read all the books, browsed every forum, obsessively considered the best stroller, bought enough diapers and supplies to last us through college, painted the baby room, assembled the crib, and baby-proofed the house. There was nothing more to be done except wait. And wait. And wait, while my wife’s belly grew increasingly absurd.
And so it was last night when I sat down to finish reading The Other End of the Leash by Patricia McConnel that I realized I am done preparing. I cannot read another single chapter much less an entire book about dogs. My shopping cart on Amazon is full and ready to order with all the doggie supplies I will need. I have read every forum and blog on the subject of dogs and service dogs. There is nothing more to be done except wait. I’ll be posting a lot less frequently as I patiently wait for Mya’s arrival at which point, I think it is safe to say, I will have a LOT to talk about and will be blogging with regularity.
In the meantime check out this blog I found by Jane who writes about training her poodle, Myra, to be a service dog in Canada.
Mya
This is the latest picture of Mya. She has been busy undergoing training with Scott Smith and is growing fast.
If all goes well she’ll be ready to come home in a few weeks. I’m busy starting to figure out what kinds of supplies I’ll need. I don’t generally enjoy shopping but this is actually pretty fun. There are some very cool dog toys available!
The big news has to do with my work situation which I talked about in a prior post.
Several weeks ago I decided to file a formal complaint with the Massachusetts Commission Against Discrimination (MCAD) after getting the continual runaround from my employer regarding my appeal of their denial for my request for accommodation to bring Mya to work. I went to a musty smelling, 1960s era office in Worcester City Hall complete with the stained oak woodwork and cigarette-smoke-stained ceiling tiles expecting a bureaucracy and a whole lot of forms to fill out. Boy was I surprised. After a brief wait I met with an investigator who is an attorney. She was young but very bright and sincere in her desire to help people. She listened to my complaint, asked a lot of detailed questions, and took a lot of notes. After I told her everything there was to tell she asked if I wanted to file a complaint. I asked if she thought I had a good case to which she responded that she can’t express her opinion but that she could tell me what the law said. She proceeded to explain how Massachusetts disability law differed from the Federal law (ADA) and how it applied to my situation. Without expressing her opinion she made it pretty clear that I had a good case and I should file a complaint.
She left for a while and typed up the formal complaint, came back and explained how the process would work and then she gave me the bad news: while the fact finding part of the complaint would happen over the next 45 days, the investigation and judgement phase would get put into a queue behind other cases that were still being investigated and they are currently working on cases from 2010, so my expected wait time would be… eighteen months!
That was pretty bad news. The whole meeting was quite a roller coaster ride. Someone with the power to influence events was interested in the minutest details of my story and was going to help fight this battle with me. It was, quite honestly, very emotional and I told her as much. For the first time I felt like someone else was helping to carry this load I’ve been bearing for the past several months. I was all elated that maybe this was all going to work out only to discover that the wheels of justice do indeed grind slowly.
Throughout out conversation, the investigator was very businesslike, unemotional, never wanting to reveal her opinion. After we were done, as I was collecting my papers, I asked her a little bit about how she came to this line of work and said that I thought it must be very rewarding to help people who have been discriminated against, marginalized, and who often don’t understand the law. For a brief moment she looked me in the eye and lifted the veil of professionalism she maintained between us as she said in the most sincere voice that I will never forget, “It is very rewarding.” I think she may have renewed my faith in people just then.
The complaint produced the desired response because a few days later I was politely invited to a meeting with the president of the company and one of the senior corporate attorneys. I went to the meeting prepared for a fight but was pleasantly surprised to find them respectful, curious, and open to discussion. I’m guessing that once the complaint was served, my situation gained the attention of the president and he decided to deal with it personally since the people I had been dealing with previously had apparently botched things by thinking they were above the law.
I’ll skip the gory details but I was told today that my request for accommodation has been approved without condition – Mya will be able to accompany me to work. They had a few concerns related to allergies, cleanliness, and where I would take her to relieve herself, but they were very reasonable and careful to not make demands.
So today is a day of celebration. The final hurdle has been cleared and in just a few weeks I’ll be bringing Mya home to a new life. I’m sure there will be challenging times ahead as we find our way but today is a good day!
Reflection ©2012 DoggoneDiabetes.com
Many months ago I began to seriously consider what it would mean to have a constant companion in the form of a service dog. Seeing Mya in pictures for the first time was a bit like seeing my unborn child in an ultrasound. For me, the bonding has already started although at this point my connection is to the *idea* of Mya.
From early in this process I noticed a shadow skirting the periphery of my emotional field of view. I ignored it for a long time but as Mya’s homecoming marches ever closer the shadow has pushed its way into my consciousness and forced me to deal with it directly. Suzanne Clothier’s wonderful book “Bones Would Rain from the Sky” brought it into sharp focus.
It all comes down to this: To love a dog is to invest in grief.
When Mya comes home she will be a puppy and our relationship will mimic that of parent and toddler. Within just six months she will have grown into a teenager and after just 18 months she will be, in human years, as old as my eldest son. When she reaches her 8th year she will have caught up with me age-wise, having gained wisdom, patience, and intuition and will be accelerating away from me towards old age. Assuming she remains healthy, in just 12 short years she will be a senior citizen in rapid decline until her eventual death.
There’s an unspoken contract we agree to when we have children. It is that, with occasional exception, we will die before them. We will not have to suffer the horror of seeing these vessels into which we pour so much love gradually lose their physical and mental vitality sliding inevitably to their demise and decay. Without that contract I wonder how many people, in this modern age of birth control, would choose not to raise a family having computed the difficult calculus of short term love versus long term pain.
With dogs, the contract is reversed. We go into the relationship knowing that we will watch our beloved family member die either naturally or by our heart-wrenching decision to end her suffering. There is no decades-long process of separation to cushion the blow like we have with our children as they gain independence, move out, and start lives of their own. Losing a dog of any age is like losing a young child whose world revolves around you, who loves you unconditionally, and depends upon you for their very existence.
And yet we do it anyways. We take these wonderful, loving animals into our hearts and lives like it is the most natural thing in the world. Whether we are conscious of it or not, dogs remind us of the impermanence of life – that our own immortality is just an illusion. To welcome a dog into your life is to exercise the belief that love is stronger than loss, and that each day is numbered and should be treasured.
I have found that people make all kinds of assumptions about me when they find out I have diabetes. Their assumptions are typically based on what they’ve heard from other diabetics either directly or indirectly. And often their assumptions are wildly inaccurate for one simple reason: my diabetes is not your spouse’s diabetes, nor your friend’s diabetes, nor the diabetes of the person you see every other week at your book club. We all have different bodies, and we all have varying levels of insulin production and resistance ranging from none to some to lots. Likewise we all have different metabolic, digestive, and adrenal systems so we each react differently to foods, levels of exertion, and stress all of which affect glycemic control.
These assumptions and tendencies to paint all diabetics with a common brush sometimes lead to comical moments when they are challenged. I frequently enjoy an inner chuckle when I inspire a double-take by eating food that most people assume is off limits due to my inhibited pancreatic function. I can almost hear people running through the list of possible explanations in an attempt to quell the cognitive dissonance between what they assume about my disease and the seemingly reckless pile-o-carbs I am busy devouring. Usually they settle on some variation of “I guess he’s not as careful about his diabetes as he claims to be.”
Often people comment that they didn’t think I was allowed to eat “that” and I usually respond with a polite comment about how there are many foods I cannot eat but this particular food I’ve figured how to eat safely. That usually elicits more questions to which I respond with a detailed description of carb counting, how fat affects digestion rate, how I can bolus insulin to cover digested carbs, and how I follow some meals with exercise to increase insulin absorption. Hopefully by the time I’m done I’ve convinced them that a) I really *am* careful about my diabetes, b) that some of their assumptions about diabetes may be flawed, and c) that being diabetic is a lot of work.
A diabetic suicide note? Nope, just waffles, real Vermont maple syrup, and walnuts. Plus a handful of chocolate chips thrown in that melt deliciously in the precious honeycomb-like indentations that make a waffle so much more than just a pretty pancake.
Here’s a real-life example. A friend we had invited over for brunch recently saw me tucking in to one of my favorite breakfast (or anytime!) foods: WAFFLES. He had the aforementioned reaction and I explained how I had spent months of Sunday mornings trying to figure out how I could safely eat this delicious morning (or anytime!) treat. Here is the magic formula that works for me and almost definitely will not work for other diabetics:
For starters I make the waffles using Trader Joe’s Multigrain Pancake batter mix. This is crucial because the extra fiber in the wheat slows down digestion.
Next I make sure every bite of waffle includes a bite of walnut. I’m nuts about nuts so this is easy for me and I sometimes mix it up with pecans instead which work just as well. The high fat and fiber content in the nuts further slows down absorption of the carbohydrates (which also explains why I can easily eat ice cream and, in the summer, do so almost daily. Ok, not just in the summer.)
For a drink I’ve had to limit myself to tea or water. I desperately crave milk with my waffle but repeated failed experiments have proven that even the fast acting insulin I inject from the pump can’t keep up with the speed that the milk’s carbs get digested.
Ok – so that’s the expense side of the balance sheet. Let’s talk credits. For a 8 inch waffle as pictured I shoot up for 75 grams of carbs with a 60/40 split over two hours. What this means is that the pump will deliver 60% of the insulin immediately then trickle the remaining 40% over the next two hours.
Immediately upon completion of the feast I get on my exercise bike and work up a sweat for 48 minutes while watching an episode of Breaking Bad (this is crucial – other shows simply can’t compete).
This is what works for me. Occasionally my glucose will gently break 150 over the next four hours as I digest my yummy breakfast but generally settles back down within range pretty quickly.
Now reading this you might think to yourself that an industrious diabetic might be able to figure out how to eat *anything*. This is definitely not true. There are many foods that, try as I might, I simply can’t figure out how to enjoy without sending my glucose skyrocketing. Among them are pizza, pasta, and any kind of sugary drink. I honestly thought waffles were going to end up on that list and it is only recently that I can say I have really figured out how to eat them safely. And boy am I glad I did!
I was tipped off to this great story on Literary Mama written by a mother of an autistic adult child who uses a service dog to detect and manage episodes. It is beautifully written and very inspiring.
http://www.literarymama.com/columns/seniormama/archives/2013/01/the-invisible-dog.html
Brenda (Mom), Laura, and Daisy (the furry one)
I met Brenda through my trainer, Scott Smith and she was generous enough to agree to be interviewed for the blog. Brenda’s daughter, Laura, has diabetes and they recently got a diabetic alert dog to help manage her highs and lows. Brenda’s openness and sincerity tell an inspiring tale that will be of special interest to parents considering a DAD. I’m deeply grateful for her time, candor, and friendship.
How long has Laura had diabetes and what was your experience with diabetes prior to Laura’s diagnosis?
Laura is 10 years old and was diagnosed with T1 diabetes a little over 3 years ago. We have no one else on either side of the family with T1 so the diagnosis came as quite a shock to us, as it does for many families. I am a pediatric nurse so many people thought that I would have been well prepared for dealing with her diabetes. That was not the case! Just like all things medical, my nursing career had lead me to a specialty within pediatrics and diabetes management was not it. I’ll let you in on a little secret….Before Laura’s diagnosis, her school had asked me if I would be interested in working as a school nurse and I told them no because I knew I would have to deal with kids with T1 and I didn’t feel like I had a clue as to how to care for them!
I understand you acquired Daisy through a trainer. How long has she been with you?
Daisy will have been with us for 1 year this April! It’s been a crazy 9 months so far, but, I wouldn’t trade it for anything!
Did you have any experience with dogs prior to Daisy?
My experience with dogs prior to Daisy was limited to my childhood poodle and our current family pet, Buddy, a wheaten terrier. So, I guess I knew the basics of having a dog, but certainly didn’t know a thing about having a service dog. That’s something that was hard for us, and continues to be hard, remembering that Daisy is a service dog, not a pet. We have 2 dogs living in our house and they are treated quite differently.
When did the idea of a DAD first entire your mind?
The first time I had heard about a DAD was in the hospital at the time of Laura’s diagnosis. The diabetes educator that was working with us was telling us about new research, new treatments, new management tools and said, “I’ve even heard that they can train a dog to detect blood sugar levels.” I didn’t think a thing of it at the time. I guess that little bit of information just got stored away somewhere in my brain. As time went on we quickly discovered that Laura would rarely feel any symptoms of a low blood sugar. She was only 7 at the time and the doctors told us that it might take a while before she started to recognize her symptoms. I would often receive phone calls from the school nurses, in a panic, because Laura came in for a routine blood sugar check and was found to be in the 40′s and was bouncing around the office, acting her usual self.
We worked with her at home and her counselors at diabetes camp worked with her there, to help her realize her body was sending her signals that her blood sugar was low. She would sit quietly and we would ask her, Do you feel shaky? Do you feel hungry? Do you feel tired, weak, nervous, sweaty, ANYTHING? And the answer was always, NO. After over 2 years of this, that little bit of information about DAD’s that had been tucked away in my brain started to re-surface. It was then that I started researching DAD’s on the Internet. At first, I was just casually reading about what they could do. As I learned more and as Laura continued to have lows without any symptoms, I earnestly started looking into seeing if a DAD was the right thing for us.
How does Daisy alert Laura?
Daisy alerting to a high glucose
Daisy was trained to alert by pawing when she detected either a low or high blood sugar. Shortly after we brought her home, the weather turned warmer and Laura started wearing shorts. The pawing alert quickly became a problem because Laura’s legs were getting scratched when Daisy would paw at her. I couldn’t have Laura yelling out in pain when she was supposed to be encouraging Daisy to alert! So, I decided that we needed to train her to alert another way. I had seen DAD’s alerting at the Wildrose DAD Workshop with bringsels and decided that would be the best alternative. It took a long time and a lot of patience to transition her over to using a bringsel. Here at home she will go get a bringsel and bring it to one of us. Outside of home she won’t touch the bringsel for some reason. She still does her paw alert outside of home but we have gotten her to tone it down a bit and usually she will just plop her paw down on your lap and give you “The Stare” which says you better check. I have continued to work with her so that she will offer two separate behaviors indicating either high or low blood sugar. After she alerts with either the bringsel or by paw, I ask her what the blood sugar is and she will bow if Laura is low or wave a paw if she is high. I highly value these alerts because it gives me a better idea of how to treat the situation. For instance, if Daisy bows low and Laura’s blood sugar registers 115 on the glucometer, I know Laura is dropping. For the same blood sugar, if Daisy waves high, I know she is climbing fast. Daisy still isn’t rock solid on offering these two different indicators but, we are always working on it.
Will Daisy alert someone else if Laura doesn’t respond to the alert?
Daisy has always seemed to prefer to alert to me over anyone else in the family. If I am not home, she will go to my husband or to Laura or even one of her sisters. I guess she knows I’m the one who enforces the finger stick check! Now that Laura takes Daisy to school with her and I’m not around, Daisy alerts to Laura. She did get stubborn right before the holiday break and wouldn’t alert to Laura while at school. We kept her home the last few days before the break and then over the 2 weeks Laura had off from school, we worked really hard to get her to alert to Laura. Everything’s going fine now and the two of them are back to school with Daisy alerting just perfectly. There always seems to be a challenge we are working on! And I think that’s more of a norm for DAD teams rather than the exception. I try to impress on people considering a DAD that it’s a lot of work and there will be continual, life-long training, re-training and trouble shooting. For us, it’s worth it though!
At what blood glucose level does Daisy typically alert?
Daisy usually catches Laura’s lows around 80. She is also great at alerting to a higher blood sugar that’s dropping or if Laura still has a lot of active insulin working that would drive her too low in the end. Sometimes when she alerts and Laura is say 120, I stand there and scratch my head, wondering why she alerted. Then I remember to check the pump and find that there is still enough active insulin to drive Laura into a very low number. All of Daisy’s alerts impress me but, those early alerts to an impending low take my breath away, each and every time. Highs seem to vary a little more. On average, I’d say that Daisy alerts at 200. That’s one of my next training goals, to get her to alert earlier at around 170.
How often does Daisy alert?
On a typical day Daisy probably alerts 4 to 8 times. Depends on what Laura has eaten, if she’s having huge post-meal spikes, if she’s been really active or sick. Also, Laura plays soccer so during the spring and fall, Daisy is much busier alerting to lows as Laura practices or plays in a game.
Does Daisy alert at night?
Night alerts are tricky for us. Sometimes Daisy wakes and alerts us and sometimes she doesn’t. I think that going to school all day long really tires her out and that she gets into such a deep sleep at night that she doesn’t wake. I would guess that she alerts about 40% of the time at night. And when she does alert at night, look out! She comes trotting into my room with her tail wagging so hard that she bangs into the door, the dresser and my night stand with it. She will take the bringsel off from the handle on my dresser, put her front legs up on the edge of my bed and then paw at me like she was trying to uncover hidden treasure! It certainly gets my attention!
How has Daisy impacted Laura’s diabetes management?
We have definitely noticed a huge drop in the number of hypoglycemic events Laura has since we’ve had Daisy. Probably a 75% reduction and when she does have a low, Daisy catches it much earlier than we ever would have before. Now lows are in the 60′s, at worst, compared to the 30′s and 40′s we used to experience several times per week. The best part is that even with the dramatic decrease in the number of lows Laura has now, her A1c has gone down since we got Daisy, which means that we are also catching a lot more highs than we used to.
I imagine it must be a little complicated having a non-working dog in the house along with Daisy. How do you treat him differently so that Daisy remains vigilant? Does Daisy or the other dog seem to notice that she gets special treatment?
It was extremely difficult, when we first brought Daisy home, to manage both dogs. We were advised to not let the dogs interact with one another. They could be in the same room and co-exist but were not to play, romp or otherwise engage one another. I thought I would lose my mind those first few weeks! Our other dog is a wheaten terrier and he is very much a terrier! He is energetic, curious and has a mind of his own. For the first week, both dogs were always kept on a lead; Daisy tethered to me and Buddy tethered to one of my older daughters. We slowly relaxed things and allowed Buddy free roam so long as he didn’t try to interact with Daisy. We even had Buddy “visit” Grandma’s house for a week or two when we were working hard at getting Daisy to alert here in her new home so that she wouldn’t be distracted by him. Now, 9 months later, I am happy to say that our diligence paid off. Both dogs co-exist quite well together. We do allow brief, supervised play sessions between the two of them nearly daily. But, we decide when and where they will get to interact. Most of the time, they just ignore one another. Each dog has it’s perks to being either the pet or the service dog. Buddy, our pet, gets to join us sometimes on the couch to be snuggled and pet where we don’t allow Daisy on any furniture. Buddy gets free roam of the house and can choose where he sleeps. Daisy is usually kept on place and sleeps with Laura every night. Daisy, however, gets to go almost every place that we go while Buddy has to stay home. I think there are limitations and privileges on both dogs, just different ones.
How does Laura handle the responsibility of caring for another living being? Is she able to maintain control and discipline with Daisy? How often and for how long are they “flying solo” without you there to help?
Being 10 and caring for a dog that weighs almost as much as you do, requires consistent handling techniques and costs more than your 5th grade math skills can comprehend is a huge responsibility. It was something that we had to consider carefully both when we were deciding if a DAD was right for our family as well as when we evaluated if Daisy should go to school with Laura. Laura has never been one to hide her diabetes and she has always welcomed opportunities to tell people about type 1 diabetes. When we were considering how she would feel about having a dog with her all the time and the attention it would draw to her she told us, “I always have people staring at me because they see me poke my fingers or they see my insulin pump or Dexcom. I’d much rather have them stare at me because I have a dog with me!” And she has held true to her statement. She never minds taking Daisy with us whether it is out shopping, to a movie, to church or a soccer game. On the occasion that I feel it best that we not take Daisy someplace with us, Laura usually is a little let down. But, the reunion between her and Daisy when we come back home is priceless! Lots of wiggling dog, squealing girl and wet kisses! There are times though, when Laura gets tired of Daisy and needs a break. When Laura’s blood sugars are especially out of whack and Daisy is alerting very frequently, it wears on Laura. I have to make sure I keep alert to these times and give both Laura and Daisy a break from one another. I never want to let there be tension between the two of them.
First day of school
This past Fall, Laura started taking Daisy to school with her. She is completely responsible for her from 8:30 am until 3:30 pm. She wouldn’t be able to do this if it weren’t for her school being so supportive of having Daisy in there. Laura is the only one who handles Daisy in any way at the school but her teachers have made seating accommodations so that Daisy can be on her cot right next to Laura’s desk, the nurses are willing to supervise when Laura takes Daisy outside to potty, the principal allows a crate to be kept in her office for Daisy’s daily down time during lunch and recess and the administrative assistant took on the responsibility of being responsible for Daisy if there was an evacuation of the school. They have a good routine they follow at school with lots of support, so it works. We are very fortunate both that the school is so willing to allow Daisy in school and that Laura, at age 10, is mature enough to handle her at school!
I don’t want to paint this perfect picture of child and dog happily being together every minute of every day. I wish, but, it’s not reality. Laura is still just a 10 year old little girl. She has to be reminded to feed Daisy, take her outside, walk her, brush her, practice commands with her and all the other things that go with dog ownership. On top of that we have to constantly remind Laura that Daisy’s alerts have to be given priority. When she alerts, Laura must check her blood sugar even if she’s in the middle of her best game ever of Angry Birds. It would be lying to tell you that we don’t meet resistance to this from time to time. I do try to make sure that Laura doesn’t burn out from all the attention and care she has to provide. Usually, if we go out someplace, I will handle Daisy so that Laura doesn’t have to. When Laura goes to birthday parties or to a friend’s house to play, I don’t send Daisy. And I do keep Daisy home from school on especially crazy days like holiday party days. I try really hard to strike a balance between Laura having Daisy with her as part of her diabetes management and allowing Laura to enjoy the freedom of just being a kid. It can be tricky!
As a parent of four boys I understand how complex and dynamic the parent-child relationship is. Has your relationship with Laura changed since Daisy joined the circus?
Overall, I would have to say that bringing Daisy into our family has effected our parent-child relationship in a positive way. While managing things like blood sugars, carb counting, pump settings and doctor appointments have been primarily my responsibility, caring for and using Daisy’s alerts to help manage Laura’s diabetes is something we do together. It’s a team effort. When we run up against challenges with Daisy, Laura and I have to work together to get past them. It’s not always easy and sometimes it’s not pretty, but in the end, we have had to listen to one another and work together to find a solution.
At school – note the bringsel taped to the side of Laura’s desk.
You mentioned that your school has been very supportive. I have read horror stories from some other parents in your situation where the school had to be forced to allow a service dog to accompany their child. How did you approach the school with your request? Were they immediately receptive?
I, too, have heard many stories of people having difficulty getting permission for their child to take their DAD to school. I think that many people do not fully understand that schools do not fall under the same section of the American’s with Disabilities Act as public access to places like restaurants, malls, etc. It is more difficult to get the accommodation of a service dog when you are talking about a school. However, that doesn’t mean that it’s impossible. I had a feeling that the school supported us having Daisy come to school even before we had her. Laura’s school, another of our town’s elementary schools and the high school all did fundraisers to help us pay for Daisy. We had a huge outpouring of support from our entire community. The school board contacted us before we even left to go train with Daisy to tell us that they were having a policy meeting to draft their policy about service dogs in the schools. They had never had a request to have a service dog in any of the schools before. My husband had to attend the policy meeting on his own because it ended up being at the exact same time that Laura and I were in Virginia, training with Daisy. I prepped him, coached him and sent him in with a stack of papers on service dogs and the laws regarding them in public schools. I told him to call me from the meeting with any questions or problems. He called me about 30 minutes after the meeting started to let me know that the school board decided to write the policy very general and was nearly a cut and paste from the ADA law on public access!
In the nurse’s office after an alert
After that, I had to write a letter to the school principal asking for the accommodation and for Daisy to be added into Laura’s 504 plan at school. At the end of last school year there was a meeting held between myself, the principal, all of the 5th grade teachers that Laura would have the following year and the school nurse. Laura and Daisy also attended. I was asked to provide a copy of Daisy’s immunizations, which I gladly did. I shared how I visioned this all working and the teachers, principal and nurse all worked with me to come up with a plan. In the end, Laura’s 504 plan had Daisy added to it with one simple sentence, “Laura will be able to bring her service dog to school and to any school sponsored activity.” That was it! No limitations, no restrictions, no crazy rules. The principal told me she wanted it very broad because this was a work in progress for all of us and none of us knew exactly how things were going to go. And just to show off, Daisy alerted to a high right in the middle of this meeting in front of all those teachers, the principal and the nurse! I do think that the ease with which we got approval for Daisy to come to school is not usual. We were fortunate. I always tried to communicate with the school and the school board, be honest and try to work with them, not against them. From the beginning I assured them that I would not send Laura to school with Daisy unless I was 100% sure that Laura could handle her on her own, that I did not expect the staff to be responsible at all for the dog, that I wanted the school to communicate with the parents of the other students in Laura’s grade to make sure that no one with dog allergies or extreme fear of dogs was put in Laura’s class and that I would be present in the school for the first 2 weeks of school to trouble shoot any problems. With lots of planning, open communication and luck, Laura and Daisy go to school without any problems!
Have you run into any public access issues with Daisy outside of school? How have you handled them? How do these situations affect Laura?
We have had very few public access challenges, so far, and they have all been settled quickly and easily. Our first was actually on our way home from Virginia with Daisy. We stopped at a rest stop on the PA Turnpike for a break and a staff person came up to us and asked if our dog was a service dog. Daisy was in her vest with “Service Dog” written all over her but I assured this woman that yes, she was a service dog, and she said, OK, and left us alone. Another time we were shopping in a store in a strip mall which had a pet store a few doors down. The manager of the store we were in approached us and asked if Daisy was a service dog. I assured her that she was (again, in vest and behaving perfectly). The manager asked why she didn’t have ID on her vest. I did a little educating at that point, telling her that those ID cards she sees on service dogs are meaningless, that there is no licensing agency for service dogs and that anyone can buy one of those ID tags from a multitude of places on the Internet. I carry little cards with me that I purchased from Sit Stay that explain the ADA law regarding service dogs so I gave her one. She thanked me and said that she gets a lot of people trying to bring their pets into her store because they have just been to the pet store a few doors down. I could tell she wasn’t exactly thrilled that we were in her store but, she didn’t challenge me any further.
What ongoing training do you do to keep Daisy sharp?
Training with Scott Smith
Ongoing training! Oh my, yes, we are always training. Every alert, every time we go out in public, every time we go outside to play or for a walk, we are always training! I’m always trying to push myself, Laura and Daisy to learn new things and to practice old things in new situations. Laura and I will often head out to the mall or to a store just to work on things like heeling, keeping place, focus and alerting while there are distractions around. We spend a lot of time on soccer fields during the fall and spring so I did a ton of practice with Daisy this past fall with keeping place on the sideline while 20 or more little girls run around chasing a ball! Even when we are just hanging out at home, there are always opportunities for practice and training. With Daisy, it’s important that she do what we ask of her the first time she is asked. We always enforce that, even at home. With a pet, it’s a lot easier to “let it slide” if it doesn’t respond to a command correctly and immediately. With a service dog, you have to be sure you don’t allow yourself to get too relaxed and “let it slide” or else you could end up with a lot of trouble in the end.
Recently, Laura and Daisy have also been going to a local training facility to take a Rally-O class. It reinforces the obedience training but also is something fun for them to do together and it’s the only time when I take Daisy’s vest off in public and let her kind of be “just a dog”, allowing others to talk to her and pet her. The trainer for the class loves to handle Daisy for demonstrations and I think Daisy enjoys this time where she gets attention from others. And, yes, she still alerts during classes despite this relaxation of our service dog rules!
Laura and Daisy at Wildrose
Laura, tell us about when you first met Daisy – what was the situation and how did you feel?
Laura: When I first met Daisy we were visiting Virginia to go look at diabetes alert dogs. We went to 2 trainers on our trip. We went to the place where Daisy is from first. Her trainer brought out a few dogs for me to visit with. Then he brought Daisy out. It was love at first sight and I knew she was the dog for me! When we were finished visiting in Virginia, I was really sad to have to leave Daisy but I knew she was the dog for me and we would soon be coming back to get her.
What kind of training did you go through before you could take Daisy home?
Public access work with Scott
Laura: Before we could take Daisy home, I had to go through a lot of training. I had to learn how to take control of her and how to do the basic commands but I also had to learn how to take her out in public. That was the hardest part of our training!
When other kids ask why you have a dog at school what do you tell them?
Laura: The kids don’t ask why I have Daisy at school any more. But, when I first brought Daisy to school there were a zillion questions about her. I would just tell them that she is my diabetic alert dog or my service dog
Do you let Daisy interact with your schoolmates? What do they think of her?
Laura: No, I don’t let kids interact with Daisy at school because it distracts her from alerting. The kids don’t get mad at me when I tell them they can’t play with her because they know she is taking care of me. I have more problems with the teachers wanting to pet her than the kids!
If I try to imagine myself at your age I think it would make me feel pretty special getting to have my dog with me all the time, especially at school. But sometimes I think I would get tired of being “special” and I would just want to be a normal kid like everyone else. Do you ever feel like this with Daisy?
Laura: Sometimes I wish I didn’t always have Daisy with me because we can’t go anywhere without people asking questions and staring at us. At school it’s hard sometimes because I have to make sure she doesn’t get bumped or stepped on. Sometimes she slows us down because we have to make sure she’s paying attention and listening.
What is the best part of having Daisy?
Laura: The best part of having Daisy is that I get to take my dog everywhere I go! Not many people can just walk into stores with their dog. It’s fun having her around and she makes me feel safe!
What is the worst or most frustrating part of having Daisy?
Laura: One of the most frustrating parts of having Daisy is that I have to check my blood sugar every time she alerts and sometimes I don’t want to.
Daisy, tell us what you think of your life with Laura and her family.
Daisy (as translated by Laura and Brenda): I love my life with Laura and her family! They are nice and they take care of me. I know I have an important job to do and I make my people so happy when I tell them that Laura smells funny! Those crazy people get all excited when I let them know I smell those smells and they talk in high squeaky voices, give me great belly rubs and feed me yummy treats! And when we go out in the back yard to play with tennis balls, well, there’s nothing better. I don’t quite get why they can’t just smell themselves when Laura smells funny but, they are only humans after all! Us dogs have to do for our people, what they can’t do for themselves. It’s ok though because I need my people to open my kibble bag, throw my tennis balls and cuddle up with me. Life is good!
Brenda, Laura & Daisy – thanks a million for contributing to the blog and sharing your story. I hope we get to meet in person some day. Maybe at a Wildrose conference if I can ever get that far south!
This post on Scott Johnson’s blog describes his experience passing out from hypoglycemia and is a sober reminder of the risk we face every day. His description of how he felt just before passing out sounds all too familar:
I felt off as I walked to the bathroom. By the time I got to the front hallway I lost all logic and couldn’t read the signs to figure out which bathroom was which. Stumbling through the hall and bouncing off of the walls, I pushed through the front door of the restaurant and reached for an outside wall.
I’ve been there more times than I care to count. Fortunately I have not (yet) gone the next step into unconsciousness and hope I never do. Thanks for reminding us, Scott, of the seriousness of this dangerous game called insulin therapy.