Beta Cell #011: Sending Isa to School Transcript

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Craig: This is Beta Cell, a show about people living with Type 1 diabetes. I'm Craig Stubing.

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Craig: This is the first episode of a four-part T1D Looks Like Me series that Beta Cell is doing in partnership with JDRF for National Diabetes Awareness Month. Each Monday of November, we'll explore a new theme that focuses on some of the challenges that come along with Type 1 diabetes.

I was diagnosed the day before coming back from the winter break of seventh grade. I was lucky that I was in a private middle school and surrounded by friends and teachers that were extremely supportive. I actually still have the get well cards that my class sent me when I was in the hospital those first few days back from break.

I remember finally coming back to school and giving a presentation about type 1 to all the faculty and staff. Back, then I was on lente for my long-acting insulin, and it peaked around six hours after I took it in the morning. I had to have a certain amount of carbs for lunch and an afternoon snack at the same time every day.

Looking back now, I'm amazed that I had the wherewithal to deal with this at 13-years-old when I was at school half the day. I can't imagine what my parents would have done if I was too young to test myself or give my own shots, and if my school wasn't as supportive as it was.

This week, we're looking at how to find and to work with a new school when you have a young child with type 1. I spoke with Greg and Christina Dooley, about their daughter, Isabella, who is diagnosed when she was just two-years-old. They were living in Mexico at the time, but they moved back to Ohio soon after and had to find a preschool for her.

Greg: We're Greg and Kristina Dooley. We're parents to Isabella. She's six-years-old. We call her Isa, I-S-A. A lot of people have trouble pronouncing that. [laughs] Isa was diagnosed with type 1 when she was two-years-old. August 28, 2012. Isa is a triplet. She has a brother named, Max and a sister named, Mia. That brings some interesting challenges to in and of itself for, us, as parents, and also with throwing type 1 in the mix. We really haven't slept since they were born I think.

Kristina: Neither Greg or I, have anybody in our families with Type 1 diabetes. We were really unfamiliar with what that meant. We had no idea when we went to the hospital that day just how much this disease would become a part of our lives, as well as he says, and the amount of care and time that it takes to manage. It was challenging, obviously, on all fronts.

Craig: You move back to Ohio and you start looking for school. How much does Isa's Type 1 diabetes play a part in that school search for you?

Kristina: I guess, I didn't realize until I actually started doing that, how much of a factor this would be in, whether or not schools would be welcoming to Isa. A couple of the schools I talked to just flat out said they didn't want to have the liability of having a child with Type 1 diabetes in the school. There was actually one school that said, "You can homeschool Isa, and your other two are welcome here." I wanted to say to the person, "Are you being serious?"

Greg: Yes, we were upset about that reaction. Those are clearly places that were not the right places for our family and for our children. If they're not willing to accept someone because they're different, that's not the kind of place we want to be involved in.

Kristina: We were really lucky, one of the last schools I contacted, and fortunately because we were from here originally, we had friends and family back here that we asked for, "Please let us know if you know of a school that's nurturing and caring, and we'll take in Isa and our other two children and care for them as they should." Luckily we called one of those schools that was recommended to us.

I just blurted out in the first 30 seconds that, "We have triplets and one of them has Type 1 diabetes. Just tell me now," basically, "if that's something you would even consider?" The woman who I just spoke with who was the owner of the school, she said, "We know nothing about this disease. We know nothing about it. We don't have any kids here with type 1. If you are willing to teach us and train us and what we need to know, we would be happy to consider them."

We went for a visit when we moved back and we loved the school, and ultimately that's where they ended up being for three years. Interestingly enough, it was a school that didn't have a full-time nurse on staff. They didn't have a nurse at all, actually. The teachers themselves really took the responsibility of checking Isa's blood sugar. Isa wears an Omnipod insulin pump dosing her insulin.

Carb counting, they had a put all of the school lunches and snacks. They carb counted everything for us. It was a really wonderful experience. We did have those initial bumps and frustrations and really disappointments when we realized the discrimination that she might face going forward. If this is what's happening at the preschool level, what might happen in the future?

Craig: If you could describe a little what your thoughts were about what her future could be like, you know because of this discrimination.

Kristina: There's part of you that wants to say, especially for those schools that receive federal funding, where they have to accept students with disabilities. Part of you wants to say, "You have to take my child. You don't have a choice." Then, on the other hand, we didn't want her to be somewhere that didn't want her. We didn't want to have someone in looking at her as a liability.

We wanted her to have the same experience as her siblings. We wanted her to be treated just as the other students. I think the challenge there for parents is, you straddle two sides of what are your legal rights, and then what are you willing to fight for his a parent that ultimately maybe isn't the best setting for your child.

Maybe legally, a school would have to take your child, but is that what you really want them to if they're already looking at it as, "Well, this is just another thing we have to do. How we got to do this today?" We definitely did not want that. We wanted a school that would welcome her and accepts the challenge. The reality is that we don't have a choice and Isa doesn't have a choice of that. We just want her to have as much of a normal childhood and life as possible.

Greg: To a large extent, we're able to shield Isa from that today. She doesn't know that there was a school that didn't want to accept her. She'll find out as she listened to your podcast is some point. She doesn't know that. There's other things that happen that maybe rub us the wrong way, but she's not aware of any of that yet.

Craig: What types of meetings, what kind of training, what kind of work do you decide to do with this school? How is that received?

Kristina: Because she was going to be- have her blood sugar checked in the classroom by the teacher, basically we ask the teacher and any other people who would be covering that classroom, that we could go in and show them how to use her Omnipod. We were lucky that after about a year at the school Isa started on a Dexcom continuous glucose monitor, which she's had since then.

That has, I think really been a blessing to us because a couple of people at the school could have the app on their phones. They could monitor it so that the teacher wouldn't necessarily have to be the sole person paying attention to all those things. They had a great team in place at the school that, at the beginning of the year when they ask the teachers, "Does anybody else want to come and learn?"

It was amazing how many teachers who we didn't even know volunteered to come and learn about it because they really cared about her and wanted to make sure that she was safe. If they had to cover the classroom or something, they wanted to be prepared. They asked lots of questions, which is really wonderful too. The teachers at the school every year that we were there including this year, even though we're no longer at that school walked with us in our JDRF Walk and became part of our walk team.

We just felt an immense amount of support at that school. We know a lot of people who do not have that good fortune to find a place like that. We do feel really lucky that we had that that was our scenario. I don't know if part of it was because we were just so upfront about what it would mean to take care of Isa. We didn't sugarcoat it. We were just very honest from the start, and I think they appreciated that.

Craig: Do you think they saw it as a burden at all? The teachers volunteering to do it, were they looking at it from a standpoint of, "Oh, my gosh, if I'm her teacher and she has a low blood sugar, I could get in trouble." What was their view on Isa having Type 1 diabetes?

Greg: That's a good question, and I've never really thought about it that way. I'm sure it's a huge responsibility for any caregiver, whether you're: a parent, a school nurse, a teacher. These were people. This was not a situation where there was a school nurse on staff. Someone they could turn to to get advice or you know have somebody come down to the classroom. I'm sure there was a sense of just the responsibility that they had. Probably as, we, at times being parents, just the fear of what could go wrong and making sure that you're doing everything in your power to avoid something going wrong going horribly wrong. I think there was genuine interest from the staff members to learn about type 1 and learn about what this was all about.

The way we approach it, Kristina and I and our family, is very much with a positive attitude and positive outlook. It doesn't mean we don't have bad days because we do. As you know, there are good days and there are bad days and some of those bad days are really bad. We don't try to necessarily sugarcoat it. For the staff and the school, we were very clear about, "Here are the things that that we need to do. Here the things that we expect, but also here's what could go wrong. Here's what you need to do if something goes wrong."

Partly what we're trying to do in that is prepare them for, "Here's some scenarios that could happen. Thankfully, they haven't happened, but if they do here's what you need to do," so that they're ready for that. I'm sure there was, maybe I'll call it fear or just general concern that something could go wrong and pretty much at any time with diabetes, you just never know.

Craig: Could you describe just a little bit for me what a 504 plan is and why they would need it, what that entails?

Greg: It's a government regulation that basically says that students with disabilities are allowed and required to have accommodations, to ensure, basically, that their learning environment and their experience will be similar to other students. If, for example, she was very low or very high right before she was going to take a test, she would be permitted to either have additional time or retake the test on another day, so that her diabetes does not impact her test taking.

Things like, one of the accommodations that she needs and others with type 1 need is access to a restroom and access to water. If your blood sugar is very high, you're probably going to be running to the restroom quite a bit, and in her class students are not necessarily permitted to go to the restroom whenever they want. That's something that's important.

Or she needs water, so she's very high and high for extended periods of time, she needs to drink water and make sure she doesn't develop ketones and help to flush those out. Other students in the class are not allowed to have access to water all day long. The 504 plan is not intended to be demands placed on a school. It's really an agreement between the family and the school to document what those accommodations will be.

Craig: You think that when you go to a school with a 504 plan, it looks very aggressive. Like, "I am parent. My child has disability. This is what I'm demanding you do."

Greg: It's funny you say that. We had a meeting with the new school. Isabel is in the public school here in kindergarten. We had a meeting the week before school started, and we went to that meeting with, I don't know how many pages, maybe a 10-page 504 plan. If you read it very much sounds like, "Here's the demands from this family of what they want and expect the school to do."

We went to the school and the very first thing I said when we sat down in the meeting was, "Here's a plan that we put together. If you're familiar with the ADA guidelines for 504 plans, you're going to see a lot of similarities here. These are not demands from us. These are just things that we would like to see to keep our daughter healthy. If there's anything in here that concerns you, we'd like to talk about that and figure out how we address it."

Had we gone to that meeting and said, "Here's our plan and this is what we demand you to do." It probably would have been a very different reception from the school, from the nurse, and the counselor, and the principal. Thankfully they're really on top of diabetes care. They've had kids in the past with type-1. They do their own training for not only the teachers that are immediately involved with Isabella's care, but others who want to learn about it.

Unfortunately, I think we know a lot of other families, whether demanding or not demanding, on the side of the parents, some schools are just not receptive and they don't want to work as a team. They're doing this because they have to do it. Not to say that they don't want their students to be healthy, but it's just a very different experience for other families that we know.

I think for us, one of the things that we've tried to do is just again make it a team-based approach, so we're not demanding anything. These are things that we would like to see because we think this is in the best interest of Isa. If this makes you uncomfortable, then we'd like to talk about it and figure out how we work together as a team.

Craig: When Isa started in this public kindergarten this year, is it different at all from the experience at the private preschool and Pre-K?

Kristina: The experience leading up to the start of school was very different. The private school that they were at also operates in the summer. There are people available that you can sit down and talk with before the school year starts. Public school districts often times the teachers and the staff are not there for most of the summer till just maybe a week or two before school starts.

We were really getting anxious I think about getting the 504 plan meeting set up. We didn't know who the nurse would be, if there would be a nurse full time. We had a lot of questions. When would she be checked? Would she be checked in a classroom? How many times a day would she be checked? What would we have to send to school? Do we have to send the snacks, or does the school provide it?

Those were all things, for example, in the private school we had it was different. About a week before school started, we finally got contact from the school. I would say that was probably the one time so far that we really were on edge, because we didn't know if we were going to be comfortable having Isa start at the school. We knew nothing about what was going to be going on.

We got the call that our 504 plan meeting was set up and we were very nervous about it. Actually, I would say, Greg and I, we were ready to be a little demanding because we were feeling like they didn't know what was going on, or they wouldn't know. We were proven wrong, I think to some extent. We went to that meeting and did get to meet with the District Nurse and the Counselor.

There were still a lot of questions though, and this was just about four days before the start of school. They were not going to have a full-time nurse. It was going to be a part-time thing, and a nurse who was floating between schools. We were very concerned about that. Luckily on the first day of school, I went in and I had set up a meeting with the nurse that morning so that I could show her Isa's pump and all those kinds of things.

I will say one thing that, even if schools have had students with type 1 come through, because of technology everyone's care is so different now and the management of it is so different, that whether they have a pump, or a CGM, or if they're on injections still, it's all very different. They have the same disease, but the care of it or the management is not necessarily the same so.

Anyway, so I went into school and I was really pleased that the nurse was there, and she said, "I'll be here full-time." She was a nurse who had been there in the past. I had spoken and I would say this is advice to other parents, is try to find other parents who have gone through that same school who have kids with type-1. Ask about their experience and ask also, what were the good things and what were the things they wished they would have asked, or wished they would have asked for?

I got some great advice from a couple of other parents who had gone through the school. They all assured me that the school was great, but that, for example, "Isa needs to leave for lunch a couple of minutes early to so that she can- if she needs to use the restroom, needs to do- go to the nurse to be checked. That she has time to do that and have time to eat her lunch, because otherwise she'll be rushing through, definitely not be able to finish everything."

Which for anyone with type-1, once your bowl is for those carbs, you got to eat it. I will say, the week leading up to school, we were nerve-racked about what would happen. It's been a little over a month since school started, and we've been very happy so far with the communication from the school. Isa is the only kid in the school this year with type-1, which is interesting for a larger public school. Again, they've had kids there before.

So far things have gone smoothly. The nurse, I would say calls us probably three or four times a day right now, which is okay for us. We encourage that and I would say, that's a key thing for us too, is to make sure that-- she knows she is never a nuisance to us if she calls us, no matter what. We'd rather she asked the questions than make judgment calls on things that maybe aren't right. As she's learning more about Isa and learning about her schedule and all those things, we would much rather she call us and ask.

Craig: What sort of questions is she asking you?

Kristina: For example, if Isa is just like- let's say, she's getting ready to go to recess and she's 90, she'll call and say, "She's still in range, but do you want me to give her a glucose tab so that she doesn't drop during-- If she's still got insulin on board." It's kind of those kinds of questions, more strategy, and things that aren't in the 504 plan because they are not cotton dry answers.

It really depends. It's situational. Okay, so she's got recess, and also they're going to be outside. It's 80 degrees outside and we know that's going to make her probably drop even more, so looking at those kinds of things. She'll call and she'll say, "This is what I'm thinking of doing. Is this what I should do?"

You can't lay out every situation it's going to happen with type-1 in a 504 plan. You just can't. She's been great. We have her number on speed dial and she's in my contacts. We already, in just a month have gotten to know her really well. Actually, she joined our team for our JDRF walk. She worked with this year. Isa was really excited that her nurse came, which was exciting.

Craig: I know Isa is only six-years-old, but how much of her management does she control if any of it.

Greg: She is the one that lives with this, we don't. We're doing our best to take care of her, making sure she has the right outlook. Eventually, at some point, she is going to be the one managing this on a daily basis and we want her to be prepared. Some of the simple things that we let her do now or make sure that she feels comfortable doing is, she wears an Omnipod pump and she also wears a Dexcom, we need to change the Omnipod.

We might give her some options, "Do you want it on your arm, or do you want it on your leg?" She always chooses her site changes, where the next one is going to go. This is probably more of a recent thing, but if she is low, we will give her a choice of what she wants. "Do you want to have a juice? Do you want to have two glucose tabs?" All of those things they seem like small decisions but it's a way to involve her in her own care and just help her to know that she's in control of something.

We also have things that are just non-negotiable. She has to wear the pump. She has to wear her Dexcom. Right now those are things that she doesn't have a choice about. She's never fought us about those things. Maybe it helps that we give her a choice of where she's going to wear it. At some point, maybe she's going to say, "I don't want to wear this pod anymore," or, "I don't want to wear the Dexcom."

We've talked a little bit about just at what point are we going to be okay with her making that decision, because it's her body and right now we're the ones making that call that she is wearing an insulin pump and CGM. At some point, if she chooses not to wear one, we're probably going to have to respect that decision. We're just going to have to think about, "What's the right timing of that? When is she the right age to make that call?"

We're getting ready for school in the morning, and I'll say, "Isa, can you go get your kit, your diabetes kit. It's upstairs and I need it." Sometimes she'll complain and say, "Why do I always have to get it?" Sometimes I respond with, "Well, it's your kit, and you need to make sure it's with you at all times." At the same time, I realize that this is a huge responsibility for a six-year-old.

When I sense that she doesn't really want to go get her kit, then sometimes I'll be more understanding and I'll be thinking about just, "This is a huge weight on her shoulders as a six-year-old," and so I will just go get it myself. We do think it's important for small children that they do have some sense of responsibility. As they grow older, they're going to be the ones managing it, so they have to understand what that means and why it's important.

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Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing, and our theme music is by Purple Glitter. You can follow the Dooley's on their blog and inspired by Isabella.com. To get more resources related to sending your child to school, or to be connected with a JDRF outreach volunteer, who has experience in diabetes in the school setting, check out JDRFs school-related resources, which I've linked to in the episode description.

Be sure to subscribe to Beta Cell on iTunes, Stitcher, Google play music, or the NPR One app, to get the next three episodes of this T1D Looks Like Me series delivered automatically to you. You can find Beta Cell on Twitter, Facebook, and Instagram @betacellpodcast.

I'm Craig Stubing, and this is Beta Cell.