PAM: Hi, everyone! I’m Pam Laricchia from livingjoyfully.ca and today, I’m here with Brie Jontry. Hi, Brie!
BRIE: Hi, Pam!
PAM: It’s great to have you on the show. Brie is an unschooling mom I’ve connected with a few times over the years, because we share the experience of having a child who is living with a chronic illness. At first glance, it might seem like you need to drop some unschooling principles when your child’s health is in question. So, I’m excited to speak to Brie about her experience.
But first, can you share a little bit about your background and your family?
BRIE: Sure. Noor has always unschooled. I just have one child. That’s it. Just Noor. I think I probably found unschooling when she was maybe around three or four years old and I was pretty sure at that point that I knew I wanted to homeschool. But I had the proverbial sitting-at-the-kitchen-table-learning-Greek image in my head at that point in time.
I come from a well-educated, academic background. I’m a college professor. So, I definitely assumed homeschooling would look very different than in fact it ends up looking in our home. I think I probably found it actually more looking at moving from that attachment parenting realm. That seems to drop off when kids reach a certain age.
And so, I believe it was Sandra Dodd’s website that I found first and it was more about the whole life aspect of unschooling. When I realized I could take that into academics, honestly, I thought they were insane to begin with. I thought all of it was pretty crazy. I remember going down that rabbit hole and very quickly closing windows, like I can’t believe I would even consider this, not having boundaries and rules and all this other stuff. But that seed was planted and I was back probably within a few hours, actually, reading more and then turning it all off. Then I would go back and read more. I think we probably came to unschooling from life first, instead of from academics.
In terms of our family, it’s Noor and me. Her father and I are separated, soon-to-be officially divorced. We’ve been separated for about three years and we are currently living with Noor’s grandmother, my step-mother. We came back from Alaska about a year ago when my father was ill so that we could spend time with him and then he passed away. Both Noor and I and also Sharon, Noor’s grandma, we all just really wanted to stay together afterwards. We’re still here and I’m not sure what’s next. We’re just trying to figure that out.
PAM: It sounds like you found a good spot right now. You guys are comfy. That’s great.
So, the next question I wanted to ask you was, when did Noor develop type 1 diabetes and what did that diagnosis time look like? And if you would, just give a brief description of type 1 diabetes for our listeners.
BRIE: Sure. Type 1 is an autoimmune disease. In the simplest terms, it’s where a body’s immune system attacks the insulin-producing beta cells in the pancreas. There’s no cure. Diet, okra, cinnamon, apple cider vinegar, none of that stuff is going to get rid of type 1 diabetes. It’s completely different than type 2 in those ways. They should definitely have separate names, although they both have to do with insulin production or resistance.
So, it’s an autoimmune attack, a constant, ongoing autoimmune attack on the body’s ability to produce insulin, on those cells. I think the average age of diagnosis is eight, which is how old Noor was when she was diagnosed, although it does occur in newborns. My brother’s partner, her aunt was diagnosed in her 70s. Once you reach adulthood, that doesn’t mean that you won’t get type 1.
PAM: Michael was 11.
BRIE: Yeah. There’s a genetic component, although that’s rarely actually the case it seems. Type 1 does run in Noor’s father’s family, as well as a couple of other autoimmune conditions. So, she was eight and had all the classic signs, drinking a lot, losing weight. I’m sure you saw that with Michael, the weight loss is very, very fast. I think Noor lost about 20% of her body weight in about a week. But sleeping, being very tired, peeing a lot. It started with the drinking. Noor had always been well hydrated, so we just thought, well she’s being really active. But then, she threw up one day, which we now know she had ketones, which is where your blood becomes acidic, because it can’t handle the level of blood glucose and the body can’t break down those carbohydrates anymore.
So, she threw up one day and a few days later, she could barely wake up and she threw up again. A friend of mine, thankfully, who had had gestational diabetes said, “Brie, you need to Google type 1 diabetes.” I did and I called her pediatrician and we were there in the office within an hour. She was diagnosed there with a blood sugar check, just a simple finger prick. This is where I do my soapbox thing. Anytime a child is drinking a lot, urinating, flushed, losing weight, vomiting, anything that looks like the flu, ask the pediatrician to do a simple blood sugar check. It really is that easy to diagnose.
We were sent directly to the large children’s hospital in Philadelphia. Noor was in DKA, diabetic ketoacidosis, and she was probably just a few short hours away from a coma.
PAM: Yep. Michael, same kind of thing and the symptoms developed really quickly, which also makes it seem flu-like, almost. It was maybe a week from when we started to notice. When I looked back, I noticed, oh he’s drinking more, he’s going to the washroom more. We went right to the hospital one night actually, because I heard him trip. The same thing, his blood sugar was extremely high. We’ve got different systems in the US and Canada for numbers, but they found it there and he was in DKA and he spent a few days there and that worked out well.
BRIE: If kids aren’t diagnosed then they die very quickly, unfortunately.
PAM: Yes, your list of symptoms was perfect.
One thing I did find was that, during that time, there were lots of advantages for Michael not being in school. Do you want to speak to some of the advantages that you and Noor found?
BRIE: Yes. So, it was pretty evident immediately that I should be incredibly thankful that we live our life the way we do.
One of the hardest aspects of diagnosis of children is that, overnight, within the space of a few hours, they go from not having a care in the world about the food that goes into their mouth to food being the center of their existence. Everything that they eat, as you know, has to be weighed or measured and calculated for an insulin dose.
From all of the conversations I’ve had and reading that I’ve done, it seems that the most common method at diagnosis, the initial management of type 1 revolves around a very scheduled existence. Depending on the insulins that are prescribed, that could mean having to eat a certain amount of carbs every X amount of hours, whether you want to or not. But because we homeschooled and because the doctors were aware that I was with Noor all the time, we were able to, from the very beginning, move to a more “complicated” system of management where she would still be able to eat whenever she was hungry and not eat when she wasn’t. And so, we learned how to manage carbohydrates and insulin in a way that worked for her without it being regimented, whereas, if she would have been in school, they wouldn’t have allowed us to start off that way.
PAM: I remember the doctor, when he came in at the hospital, and they started to talk about that and we told him that he homeschools and he’s not in school, he looked at me and told me about the “flexible insulin management system”. He said, “That’s usually what we do with adults, but because he’s not in school, we’ll do that with him, too.”
BRIE: Yeah. To go straight to an IC, to insulin carbohydrate, I think really saved all of us a lot of heartache. A lot of the most difficult aspects of diagnosis, we got to avoid, actually.
PAM: Yeah. And then, homework and school work aren’t piling on top of them, as well.
BRIE: Right. And all the worry about them being low when they’re away from you and all of that. And I think the other thing that was really clear from the get-go was we had facilitated an environment where Noor listened to her body from the beginning. If she was full, she stopped eating. If she was hungry, she ate. If she felt like sleeping, she slept. If she felt like being awake, she was awake. Our kids have to be so aware of how they feel all the time. I think it was just fluid for her to be in that space, to have that mind-body connection.
The first time she went low, she recognized it and has since. She’s completely aware of her lows. I do believe that that kind of awareness for an eight-year-old is not necessarily commonplace all the time. In a conventional setting, we encourage children not to trust their bodies or not to listen.
“Don’t eat that. You’ll ruin your appetite.” “Well, I’m hungry.”
PAM: Yeah. “It’s 6:00. It’s time to eat now.”
BRIE: Right. So, that was really helpful. There were some challenges. I remember being really nervous at first, because you’re monitored so closely, a conversation with the nurse every day over the phone and all the logging, records every time they eat, every time they receive insulin, exercise, all that record-keeping at first. I remember being nervous about them seeing Noor eating at midnight.
PAM: They’re always asking, “So, what time is it that you go to bed?” when they look at his logs. “Your breakfast isn’t until 10 or 11?”
BRIE: I know. It’s always funny. They would say, “Oh, her numbers are just fantastic early in the morning. Most people have trouble with breakfast.” Well, she’s asleep! She’s not actually eating then.
PAM: We found that, too, that because we hadn’t been controlling Michael’s eating before, that he was already following his body, that he was able to pick up messages, as you mentioned with Noor. He can feel when he’s going low. He can feel when he’s going high and he knows that his blood tastes different after he does a blood prick when he’s high.
Actually, we were talking about it at a karate tournament last weekend, because he notices that obviously it’s very hard to perform when you’re low, so for him, performance-wise high is better. He can tell that clenching his fists, clenching his muscles, is harder when his blood sugar is higher. But that’s it. When you’re not watching the clock and eating what you’re told, you’re listening to your body instead and you’re noticing all these connections. That’s been so helpful for ongoing management with that.
BRIE: In some ways, it was a double-edged sword before Noor started using an insulin pump, because there were those few times where we’d given her insulin for a meal. That was a difficult aspect. She had never had to think before she started eating, “How much do I want to eat?”
PAM: Yeah, that’s true.
BRIE: All of it was dependent on that injection, how much we would give her. So, there definitely were times where, instead of erring on the small side and then getting a second injection if she was still hungry, her eyes were bigger than her stomach and then we’d be stuck having her drink lots of juice to make use of whatever insulin was already in her body. But all of those things really just helped us know that we had to move towards an insulin pump faster than is normally done with kids her age, in the US anyway. Other countries, not so much.
PAM: They had offered it soon. For the first year, he wasn’t really interested in moving to a pump, but eventually, he decided he wanted to try that. And now he’s considering going back, but that’s the thing. They gain their experience and they see what works well for them and all these things are options.
BRIE: Right. They’re just tools. The only rule is, you have to have insulin every day.
PAM: I think I have a question about this later, so let’s not get into it. But yes, you’re right!
So, the next question here, once we got a handle on the day-to-day management and it became more routine, I found it really important to shift our focus away from the illness and back on to all of Michael, as a person. Did you find yourself making that shift as well?
BRIE: Oh my gosh. Yes! Your awareness is there, all the time. Every conversation starts with, what’s your blood? Are you low? Let me check your blood. It’s all diabetes all the time. We were really lucky. I very quickly became unenamored by our large children’s hospital here, which is one of the best in the country, but it’s a large children’s hospital and everything is done by protocol. I understand the reasons for that and I also wasn’t willing to subject Noor to having to follow it.
I knew from her experiences in the hospital that it felt very important to me to find a health provider who also had type 1. Because I don’t know. I don’t understand. I don’t get it. And I wanted Noor’s provider to get it. So, we were very lucky and we found a pediatrician who’s been type 1 for 50-some years. When we went to see him for the first time, he was just wonderful in every way imaginable. He said, “Always, always, child first, diabetes second.” And that’s so important.
She was eight and she was at the age where she was just starting to really develop this sense of independence. We lived in the woods and she would go off with the dog alone and we wouldn’t hear from her for a while. And all of a sudden, that stuff kind of became, “No.” So, to be able to use that unschooling mindset in thinking flexibly and, how can we make all these things work now that other things have changed? became crucial. That’s how we focused on Noor again. Who is she? What does she need? How do we put diabetes in the background to make Noor just Noor, somebody who has bunk beta cells.
PAM: Yeah. It’s just a few more parameters that get added in.
BRIE: You have to deal with diabetes for a little while so that the panic subsides and then you can do that. Because the panic is so strong at first, at least for us.
PAM: Oh yeah. That’s why I said, once it becomes a bit more routine, because yes. You have to learn the information that you need. Once you get a handle on what’s going on and what you can do and you feel a bit more control over the situation, then your mind can open up, because you can move past the fear.
BRIE: I’ve pretty much bowed out of any kind of type 1 diabetes parent groups because that fear is just so prevalent and I just can’t deal with it. The way I deal with any unknown is I intellectualize it, as an academic. When we got back from the hospital, the first thing I did was I dove into research and hit up all my geneticist, biologist friends to explain this to me. That was a part of it, too. I think I had to really wrap my head around, physiologically, what was going on in her body as much as I could.
Once I got that and once I did a ridiculous amount of research, the true dead-in-bed statistics. I hate that phrase. But I know them and I know that it’s incredibly rare. There are so many other things to worry about. I don’t worry about that at all. But I needed to know those numbers for myself. That’s how I moved back to, okay, this is completely manageable. There’s no need to make it the hyper-focus of our lives.
PAM: I think you made a great point about switching up doctors. I know we were lucky. We are in a small town, so we ended up at the local hospital and the clinic there. I thought I’d share a couple of the guidelines at the clinic that they have posted.
They talk about supporting the choices the person with diabetes makes without judgement and build a trusting relationship that empowers the person with diabetes to care for themselves to the best of their ability.
So, I know I’ve changed up other things for the kids over the years, if this activity or this location doesn’t work, we go somewhere else. We were lucky that we ended up somewhere that we felt comfortable with the way they treated Michael. They talked to him. They didn’t talk to me. Of course, they talked to me, but they asked him. He was the person managing his diabetes. It wasn’t me controlling him.
For anyone dealing with a chronic illness, if you’re not happy with the environment of the care and support that you’re getting, just keep looking. It’s really worth it.
BRIE: It’s so important. If you’re managing a chronic illness, it has to be a holistic approach. We may talk about this later on in our conversation, but especially with some of these chronic illnesses, especially diabetes which is so food-centric, the rates of eating disorders in adults who grew up with type 1 is off the charts, as is depression and anxiety. I think we really can negate those risks by helping our kids feel in control and empowered and by not trying to manage every little aspect for them. Our doctor also says things like, “There are no good or bad numbers.” Just the language that you use, it’s just data. Check it and move on. All this stuff is really, really important.”
PAM: Yep. It’s just data to give you some clues of what’s going on.
That piece about “in control” I think is really crucial, too. I see either parents completely take over control of it or they insist that their kids do it all the time because, “I’m teaching them responsibility to do it.”
BRIE: Right. “How are they ever going to be able to do it as an adult if they can’t do it right now?”
PAM: Exactly. That was one thing I wanted to mention, because at various times, Michael just didn’t feel like prepping his needles or filling his pump, so I was happily offering to take all those little bits off his plate when he didn’t feel like he had the energy to do them and not making him feel bad, not shaming him for it or making him feel guilty. “Okay, fine. I’ll do this.” To help them along, to do the extra stuff that’s on their plate to deal with whatever illness that they’re dealing with. It doesn’t mean that you’re going to be doing it till they’re 45.
BRIE: No. In fact, I think it’s the opposite. It has to be a partnership and again, that’s the other thing that unschooling, prior to diagnosis, set us up for success. We were already living life in partnership with our child, so that transition to managing a chronic illness was pretty fluid.
There’s a wonderful pediatric endocrinologist who’s also been type 1 since he was eight years old, Dr. Stephen Ponder. I don’t know if you’re familiar with him. He talks a lot about this idea of partnership. It almost reminds me of La Leche, in a sense, where it’s a dyad. And then you throw diabetes in there. You give as much control as the child wants and you’re always right there to take it back and to do it for them. I think about it sometimes, I think when I get the saddest is when I have those moments of awareness that, this is the rest of her life.
I recently went out of town for a few days for the first time ever without Noor. I was so excited, I bought this tiny little purse, because as a diabetes mom, you carry a big bag! So, I bought this tiny little purse, something I haven’t been able to carry in years and I was so excited. In that moment of excitement, there was this gut punch that, at least if the technology doesn’t change as Noor gets older, and I know that it will, but for right now, she’ll never be able to carry a tiny little purse like that. Or she could, as long as she has her cargo pants on so that she can have her fruit chews in there or something or her pump. It’s that. I will do as much of this for as long as you want me to, because, at some point, I won’t be there to do it for you. It’s my honor to carry as much of the burden as she’s comfortable giving me and it changes all the time.
There are times when she absolutely doesn’t want to deal with it. “Mom, will you just deal with this today?” “Absolutely. Of course, I will.” Or, “Can you change my pump for me?” “I would love to.” And then, as she gets older, she’s 12 now, for the most part, she really doesn’t want me to do anything. So, when she does ask, I’m happy to help.
PAM: Yes. Exactly. And speaking of your cargo pants comment, he found a spring jacket online with tons of pockets. It’s amazing all the things he can fit in there.
BRIE: Like a photographer’s vest or a fishing vest. Noor’s got a thing for those.
PAM: I think we probably hit most of this, but one thing I just wanted to make sure to pull out was this next question I had here.
When we look at how children learn through unschooling, we see that the most effective learning happens when they have choices and control over their actions. Of course, that can seem scary when the consequences there are drastic and immediate, but even in this situation, I found that learning flowed so much better when I don’t take on that role of gatekeeper, because he’s going to most effectively learn self-management by doing it, by making these choices and seeing the results.
We certainly don’t have these conversations as much anymore as when he was younger, when we would take a card count and find out what his blood sugar is and what activities are coming up and if I think maybe this dose would probably work and he thinks that dose, we’re going to go with that dose.
BRIE: Exactly. I have been so humbled. I’m sure you guys had the same experience. You get home from the hospital and the first thing you do is go and buy a food scale. Everything gets weighed. I brought that thing with me to play dates, on vacation, I brought it to restaurants. I was a freak at first. And it’s been four years now. I haven’t carried a scale with me now for three. At this point, even a few nights ago, we bought a new food that we haven’t had, these honey sesame sticks. We’ve bought the regular ones, but never the honey ones.
Noor filled up a bowl and I asked her how many carbs she thought. She told me and I said, “Oh, I think you’re way off,” so I weighed it. She was exactly right. And that happens all the time. I’m human. I have flaws and I am a control freak. That’s something that we struggle with all the time. But she’s really good at laughing at me and I always defer to her. I know she’s right, even though I feel I have to have my say. I know that chances are, she’s right. And if she’s not, that’s perfectly okay, because that’s how she learns.
It’s uncanny actually, and it goes back to being in tune with her body. We’ll have these charts of carb counts or carb factors for a certain food, but if you mix that food with a different food, everything changes and all bets are off. It’s just really this complicated chemistry. I’m guessing that Michael is like Noor in that, they just know. And if they don’t know, their sense of it is way closer than ours. I find that just beautiful and fascinating and at the same time.
I think there’s also this aspect of gatekeeper/director that you mentioned, just even in food choices and I know both of us cringed to talk about it.
PAM: Food again?
BRIE: It’s the question that gets dropped in unschooling forums all the time. But going back to that high incidence of eating disorders when every morsel of food is controlled, I think it’s really important to step back. We know that a slushie, there’s no way that synthetic insulin can match the glycemic load and speed of a slushie, which is an Italian water ice or something. But there’s just no way. We can do pretty good, but they’re still going to probably go high.
And I know that if she eats a big spoon of fat with it, like peanut butter, that’ll maybe slow it down a little bit. And she knows, because I’ve told her and she’s experimented, but they still have to eat the slushie if they want it, with or without that spoon of fat to slow it down, because that’s how they learn. That’s how you come to make choices that are the best for you.
I read about parents going into the rooms of their kids who have type 1 and finding all of these candy wrappers or empty sugar bags in the closet or under the mattress and it just breaks my heart. I know you have a question about trust and it’s all just so bound together.
PAM: It really is. Who better to learn? You’re taking away their ability to learn and they’re going to be making choices against your control, rather than choices that work for them, no matter which.
BRIE: Right. If they think they’re going to be judged or shamed, then that’s where lying and sneaking come from.
PAM: We’ll just call this question eight, because that is the next one.
We talk a lot about building trust in the relationship with our children in unschooling, free of judgment and shame, have you found that to be a valuable foundation for your days? Why, yes!
BRIE: Yes! Probably the most valuable. That’s the gold star for unschooling and it goes back to partnership, of course. You can’t be in partnership with somebody you don’t trust. So, Noor has to trust that I’m on her side and that, no matter what, I will help her figure out a way to make whatever it is that she wants to do happen, as safely and sanely as possible, and that she can tell me the truth. We’ve always had an agreement, no bad will come from the truth. We might have some uncomfortableness, but I won’t be angry, you won’t get punished, not that she’s ever been punished anyway.
PAM: They still know it’s possible.
BRIE: Exactly. I can’t help if I don’t know.
PAM: That’s it. Trust keeps your lines of communication open. It’s trust both ways. For me, if I have a question or I’m uncomfortable about something or, what are your plans for this? He’s happy to answer me just as much as he knows that when he has a question, he can come to me and we will always figure out a way to make what he needs or wants happen.
BRIE: Even in those rare times where it has to be an in-the-moment, this can’t happen right now, then they also trust us that it will happen as soon as it can happen, whatever that means.
PAM: Yeah. I think people get confused thinking that it always means “yes” right away without any thought and conversation. No. A trusting relationship and helping them do what they want to do means we take all these factors into consideration and together we come up with a plan to do it. It may not be this afternoon. It may not be today. It may be next week. But we’ve all worked together to come up with a plan that works within the parameters that we know that we have. It’s so different than than just being permissive or something.
BRIE: Because that’s just as thoughtless, I think. It’s back to that whole, big scope, flexible thinking.
PAM: Yeah, and looking at the bigger picture.
BRIE: And, like you’ve mentioned a few times, the long view. Chances are, there is not going to be a cure in our children’s lifetime. As much as we want to believe there will be, I personally don’t think that there will be. I think that technology will increase to such an extent that it will become a lot different and there won’t be as much thought involved on a moment-by-moment, day-to-day basis, but in any event, this is something that they’re going to be dealing with for the rest of their lives.
We didn’t talk about burnout at all, but I think that’s that trust and also the ability to know that it’s okay to make a mistake, to mess up. Or even, it’s okay to make a choice that you know isn’t really the best choice, but it’s the one you want to make. You need to have room for all that stuff, because we’re in it for the long haul.
PAM: This next question, I think we’ve touched on as well, it’s been a fun conversation.
Moving forward a bit into the teen years and as they get older, they start to spend more time away from their parents. And if their chronic illness management has been so closely controlled by their parents, that time when they’re out from under their parent’s gaze can seem like freedom from all of it. Often, I see them making choices that are in reaction to the release of control rather than, I’m not even going to think about it and come up with my own plan, I’m just going to do the opposite. Because now I finally can.
BRIE: We see that all the time. And research actually confirms that, that the kids who have the worst possible outcomes with this specific chronic illness, the ones who end up back in the hospital in DKA time and time again, who have the highest A1C numbers, are the ones who come from either a completely hands-off environment, where the parents are like, “It’s your disease. You deal with it.” Or the ones who are gatekeepers, who are just micro-managing every little aspect.
And that’s exactly what happens. Those kids get out from under their parents’ gaze and it’s not even a thoughtful, “You know what? I really want a slushie and I don’t care that I’m going to be 200. And maybe so they don’t know, I’m going to test my control solution, so they don’t know that that’s what my number was.” Or the kids who actually decide that they want to live on that edge of ketones and DKA. It’s horrifying and terrifying.
As a college professor, I see that without chronic illness. The kids who have been the most controlled in their family, they hit their freshman year of college, and it’s, woohoo! Pregnant girlfriends. Drugs. All kinds of crazy, insane stuff.
Sandra Dodd talks about that. She talks about it all the time, I’m sure, still. But I remember that really hitting me when I first started reading about unschooling, how really, what we should think of, is giving them the power, the control, the chance to make teeny tiny decisions from the very beginning, because those decisions add that confidence, that ability, that trust. All that builds and builds and builds until one day, they’re teenagers and they’re faced with some really huge decisions. We want them to have experience making all kinds of choices.
PAM: Exactly, when the consequences aren’t big. Or when you’re right there with them to answer their questions and everything.
BRIE: Exactly. Small consequences and a huge safety net.
PAM: There you go. Because decision-making is a skill.
BRIE: It’s like common sense. It’s not common and it’s not innate. Both are learned. I think that’s what our kids have really great experience learning is both common sense and decision-making and looking ahead. And also, how to deal with, “Well that wasn’t the best choice. What do I do now?”
PAM: It’s just another decision. It’s just new information has come in and they can gain experience, years and years of experience with that as they grow up.
BRIE: It’s like we are talking about not looking at good or bad numbers, it’s just data. I think it’s the same thing with those decisions. It’s just information. It’s input. You learn from it.
So, our experience has been, Noor is 12, so she’s not quite there yet. She’s very truthful. I don’t think she has any reason not to be. She doesn’t go crazy unless she goes crazy and then, she usually lets me know that’s happening if she’s not with me. I’ll get a text message with a picture of the slushie.
PAM: It’s that self-awareness piece. They know.
BRIE: “This is about to happen.”
PAM: So, that leads nicely into the last question I have here. As they get older and their life expands, as you mentioned, you recently had your first extended trip away. And new fears crop up like that.
PAM: I was just about to say, Michael’s going to be driving on his own in the next month or two. So, he’s been driving me around for the last few months and has done his driver’s ed. So, we have a graduated license in Ontario, so there are two stages. Now he’s ready to go get his second stage, which he’ll be able to drive on his own.
I just wanted to talk a bit about how you process through these fears as they come up. I know you mentioned intellectualizing them, getting the facts and all the information. And I think that’s been a huge piece for me.
As an engineer, I’m kind of into that kind of thing, too. The other thing that helps me is, when my imagination starts to go wild, is just reminding myself that nothing is cast in stone about the future and to not base the decisions that I make today on future wild imaginings.
I’ve seen that all over the place and it’s just reminding myself that this is the same fear as any other kind of fear. Unschooling. Can they ever get to college? All the typical fears when you first look at unschooling, you go through the same kind of thing here.
BRIE: Yeah, that kind of imagination game where, what’s the worst that could happen? Then you peel that apart and maybe it’s not that horrible when we look at it that way. Yeah, I do that too.
Honestly, for me, what helps the most, and this is going to enunciate my control tendencies, is technology. Noor uses a continuous glucose sensor, the Dexcom G5, which means that I have constant, continuous access to her blood glucose values. I see them in real time, even if I’m ten thousand miles away. So, for me, honestly, I don’t know that I would be able to let go as gracefully. I would still force myself to do it, but it wouldn’t be as pretty without that technology there. I know that I can always text her and say, “Hey! Are you paying attention? You’re low.” Or I can text someone she’s with and say, “Hey, Noor is really low. Has she had some juice or something?”
I actually got to experience not having that lifeline, if you want to call it that. We went to Costa Rica about a month and a half ago and Noor went scuba diving, which has been a dream of hers for quite a while. And she was underwater for an hour.
PAM: I saw pictures and I thought of that when I saw your pictures on Facebook.
BRIE: That was probably the longest that I have been unable to see her glucose. Sometimes the technology isn’t working right or sometimes she says, “I don’t want to wear the technology,” so there are other times when she’s without all that stuff. But she was 40 feet under the water. I had no idea what was going on. And I didn’t know she would be down that long. Honestly, I thought they’d go down for 10 or 15 minutes and then come back up and we would check blood.
Before they jumped off, when her dive instructor said, “See you in an hour,” I nearly vomited off the side of the boat. And thankfully, the boat captain was there and he kept me talking, but I was physically ill the whole time. It was the hardest hour of my adult life, I think. And then, she came back to the surface with the biggest smile I have ever seen on her face and that cockiness, for lack of a better word, that self-assurance that she knew she’d been somewhere where very few people in the world have ever been. It just stayed with her. It’s still with her. So, that was a really important experience for her obviously, but for me, too, because I always have to know that, like you said, it’s going to be okay.
PAM: Stretching your comfort zone.
BRIE: Oh boy. And how! Yes. So, I would say the technology and even when it’s not available, that’s good, too, because it stretches me into that place of imagining my worst fears and realizing that they’re just that, ungrounded fear.
We both know, because of all the research we’ve done into the endocrine system, we’re both fully aware of what that does to us on a hormonal level, that cortisone and adrenaline. And it stops us from thinking rationally. So, knowing all that in the moment is also really helpful, too. Like, this is Brie. This is Brie having a completely irrational, hormonal fear response. And what do I need to do to get through that? But driving, that’s a whole other thing.
PAM: We have so many juices and tablets in the car. They’re going to be really close. He is a great driver and they have guidelines here of what your blood sugar level has to be, and if it’s below this, you have to wait 45 minutes before you can drive.
The other thing is to make sure you place those not as, they’re trying to stop you from doing things, because then anyone will want to rebel against somebody who’s trying to control them. But no, these are guidelines for yourself, because when things get out of whack sometimes you don’t think straight.
BRIE: No, you can’t. And that’s being out of whack.
I remember seeing that a lot on the parent forums, “How do I get my teen to check his blood sugar before he gets in the car?” Again, when your life isn’t over-saturated with all these rules, then these rules or protocols, it’s not nefarious, it’s not to thwart you. It’s not this thing standing in the way of you and what you want. It’s completely different. You’re right. It’s this protective element.
PAM: But if your parents have been telling you, “Check your blood sugar,” all the time, all that time growing up, it doesn’t feel like something in your control, something that you’re doing for yourself to help yourself. It’s the wrong perspective.
You need to trust and give them the control over themselves, because then, the actions that they’re taking, they know they’re doing for themselves, not to satisfy someone else. Because it’s their health that it’s about. So, if you keep telling him what to do, they’re doing it to satisfy you, not doing it to take care of themselves.
BRIE: They’re either doing it to make us happy or to avoid punishment.
PAM: Exactly! And their health isn’t even in the equation there in their heads.
Well, it’s been an hour, Brie! I want to thank you so much for taking the time to speak with me.
BRIE: It’s my pleasure. It was wonderful talking to someone else who lives this. And you’re so much farther ahead on your journey, too. I’m sure when Noor starts driving, I’ll hunt you down!
PAM: Get in touch! No problem. And before we go, where’s the best place for people to connect with you online? Is there a spot you hang out?
BRIE: I’m on Facebook occasionally, not so much these days, because life is really pretty busy. But Facebook is probably the easiest.
PAM: Excellent! Thanks very much again, that was wonderful!
BRIE: My pleasure, Pam!
BRIE: Bye bye.