The Challenges of Parenting a Child With Type 1 Diabetes, No One Understands

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One of the challenges of parenting a very young child with type 1 diabetes is the interactions with immediate family and other parents.

Our five year old son Sacha has had T1D now for three and a half years, and sadly, only one of our friends has ever tried to learn how to test our son’s blood sugar. This probably says a lot about us and the quality of our relationships, but I still find that statistic unsettling.  

To be sure, other adults in our lives do know how to take care of Sacha, but for the most part, they are people we pay. Our babysitter, K, who is terrific; a back-up sitter here in Minneapolis that we’ve trained; and Sacha’s teachers at his Montessori school. If my wife and I were to get injured in a car crash, only a handful of people would know how to care for him. The Medical Alert card he carries in his pump pouch is a nice backup, but doesn’t really solve the problem. His nine year old sister, Tessa, has excellent instincts, but she’s still far too young to provide real support. 

Our families are supportive, but they live far away. 

When my son was diagnosed we lived in Ottawa, and had a good group of friends living nearby. Our kids often played together, and we felt that we had a close community of coworkers and friends. Still, only one of them ever offered to test Sacha’s blood, and none of them learned about injections, dosing, carb counting and the like. The same is true now in Minneapolis, although to be fair, we’ve only been here for a few months. 

What this means in practice is that Sacha can’t have a playdate or birthday party at anyone else’s house unless one of us is there. Sleepovers are out of the question. And when other kids come over to play, their parents never really understand how closely we have to watch him. Of course, my wife and I rarely take a night off, and we can’t drop off our kids with friends or relatives.  

The point was driven home to me a few days ago, when friends dropped their kids over at our house for a playdate. We’d asked for a specific time frame, so that we could get Sacha his dinner on time, but life intervened, and they couldn’t stick to the schedule. They realized Sacha had T1D, but hadn’t realized what this meant in practice. As my friend later said, “Sacha looks so normal and healthy, it’s hard to remember what you guys are dealing with.” 

This, then, is the problem. In the developed world, where medicines and advanced diagnostics are plentiful, very young T1D kids like Sacha can, thankfully, lead an almost normal life, albeit with a lot of adult care and supervision. In the poorest parts of the world, many of his peers would have died or might suffer from stunted growth or other outwardly visible signs of illness. Many, moreover, would be on lower doses of premixed insulin that would keep them alive, but also run their blood sugars so high as to almost guarantee life-ending complications. 

But even with ready access to insulin pumps, blood glucose test strips, the latest in analogue insulins, and (soon!) a continuous glucose monitor, Sacha will always be living on the edge. He will always be at risk of plunging into a life threatening hypo after a short burst of activity, and we are always at risk of miscounting carbs, misjudging insulin doses, or otherwise endangering his well being. And if he were to get lost or somehow be separated from K., his mother, or I, he’d not know how to care for himself. The police or ambulance team would have to somehow figure out that he was Type 1, and then locate a medical professional who could help. In the meantime, Sacha could easily go hypo or hyper. 

These short term dangers may even be higher in wealthier contexts, where we can afford to to keep T1D children under much tighter glycemic control. Although this is much better for them over the long term,  it increases the everyday, short-term risk of hypos. 

Most people cannot comprehend what it takes to keep a child with diabetes safe in the short term, and under tight glycemic control over the long term. They can’t understand the implications of constant testing, constant vigilance, constant fear. How can they? 

When Sacha was diagnosed, friends told me, “don’t worry. It’s no big deal. He’ll limit his sugar intake, and take a pill.” They were thinking of Type 2, of course, and like me, had no idea what Type 1 entailed, especially in little kids. 

Now, almost four years later, I’m still not convinced that the friends we are closest to really understand the challenges.

Comments (10)

  1. Things will get better.
    My daughter was only just 10 when diagnosed almost two years ago. Right from the start she managed to do all her own injections (she’s on MDI) and is generally very aware of hypos. I presume this is common in a 10 year old so I hope that your confidence in Sacha will grow as he does.
    Our daughter has been on Scout camps and is doing an overnight hike this weekend. Yes, we’ll be worried but it’s important to let then. For sleepovers we’ve had parents that are on the ball and ask questions but we’ve also had parents who are clueless to what’s required. It’s all a learning curve, but it does get better as they get older.
     
    Kev.

  2. Penn at

    James, we have three boys with T1DM (22, 18 and 17 yo) and I was nodding my head reading your post.  I’ve been there.  You said it very well.  My wife and I have a nice family, but I guess its just too scary and dark for them to follow us into the land of 500 blood sugars.  By far the worst time was when our oldest was five and starting school.  The other two were diagnosed later (9 and 16 yo).  Getting family involved was always tough, and getting school on board for that first one was bad, even with a reasonable 504 plan.  I agree with Kev, it will get better, but mainly because your son will get better at handling it himself and probably advocating for himself too.   

  3. Catherine at

    Thanks for this, James. I was diagnosed when I was 22 and continue to feel grateful that, for as difficult as diabetes is to live with, at least I developed it when I was old enough to take care of myself. I once did a JDRF Ride for the Cure event and ended up biking for a while with a dad of a kid with type 1, and just hearing him talk about his experiences — the stress, the pressure the fear — brought tears to my eyes. I hope you and your wife are able to take a step back and give yourselves credit for how much work you do to keep your son healthy, and how stressful it is. I think we focus so often on the burn-out of people with Type 1 (which is definitely legit!) that we forget to acknowledge that it affects caregivers, too. Thanks for the post.

  4. Stephanie at

    My son is 2 yrs old and just diagnosed at the end of July. We’re in a somewhat similar situation.  So far my mom is the only one that knows how to check his BS and give shots so my husband and I feel pretty tied as far as being able to leave the kids (we have an 8 month old daughter) and get out together. My mom doesn’t mind watching him but I know it makes her extremely nervous when she has to check him or give him a shot.  We’re in the process of getting him a pump and hope to get more family involved  in the training.  I don’t think I’ll be able to leave him over night with someone else for a long time!

  5. Chaitanya at

    My sister was diagnosed with Type 1 Diabetes at age 20. Still, it was difficult for our family to adapt to the challenge in the initial couple of years. It must surely be far tougher to deal with the situation of a child with Diabetes. Kudos to all the parents and family members and kids fighting this challenge.

  6. denise_wanless223@hotmail.com at

    My daughters were diagnosed at ages 2 and 5.  Everything you wrote about has been our experience as well.  It can be a lonely place to be…this diabetes world with young children.  The hardest part of having very young children with T1D is that they don’t know how to express when they are low or how they are feeling in general.  They require constant vigilance and I’m feeling burnt out currently.

  7. Thanks for sharing your story. My dad has type 1 diabetes, and as his son growing up – I was always concerned that not everyone knows about diabetes.  For example, when I had to sprint through an airport to get orange juice for my dad going hypo – people looked at me like I was crazy, but I just had an urgent need.  One thing I think could help, but is just a suggestion: you could make a one-page, “diabetes 101″ sheet for your close friends and family – I would even laminate it. “How to test blood sugar” “Symptoms of Low Blood Sugar” “When to Call Us” “When to call 911″ etc. (With my Dad it also includes all his medications). If you empower your network with education, it may help ease your burden of constant monitoring. I know that before I understood the disease, I was more worried I could mess something up, now I know I can actually help the situation out.

  8. Debbie at

    Well said, James! I feel your frustration at feeling so alone in facing the challenge of caring for a young child with T1D. My son was 9 when he was dx’d 4 years ago, and was able to alert us to his lows, at least when awake. Now we’re in the roller coaster of puberty and growth spurts, which is a new sort of interesting. i wanted to share a few things that have helped our family tremendously over the past 4 years.  Ones is a resource from our JDRF chapter- a monthly family network get together.  It’s a social event, held at a park, indoor climbing gym, laser tag, bowling, etc, where families can get together and discuss challenges end not feel so alone.  We’ve made some great friends from attending those activities.  The outreach coordinator at our JDRF chapter, along with some volunteers (parents of T1D kiddos) put together a calendar of events and the chapter puts the info on the website and sends evites as well.   The other thing is a Facebook group that one of my friends started for our local T1D community. It’s a combination of a newsfeed and support group, and has turned into an invaluable resource for our community.it’s also a place to find someone awake to vent to when you’re up at 3 doing a bg check!   it’s possible that the JDRF chapter in your area has some resources, and maybe there’s an online group that can connect you with other families in your community.  Best of luck to you and your family!! 

  9. linda buzogany at

    Hi James,  I get this so much.  I wrote a book in really accessible language that has helped many of my friends/fam understand it in a way they never had in 12 years.  If interested, it’s called ‘The Superman Years’ and is available on amazon.  Best to you,

    Linda

  10. Piyush at

    Hi All,
    My Daughter is 05 years old and has just been diagnosed with Type 1 Diabetes. It is indeed very difficult for her at such a young age to even understand the implications. She keeps on asking when is this going to end.
    As a parent how are we supposed to answer and make her undersatnd

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