Kids with chronic illness face special issues when going back to school because they’re at risk of their accommodations becoming eroded. In particular, children who live with Crohn’s disease or ulcerative colitis might be in danger of not being granted appropriate bathroom access. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. We discuss the worrying behaviors that parents should watch out for in their kids and how we can help kids who feel scared to go back to school.
Concepts discussed in this episode:
- How to Practice Active Listening
- How Is Your Child Coping With COVID-19? Here’s What to Look For
- Managing Family Stress During COVID-19
- Template Section 504 Plan for Children with Inflammatory Bowel Disease
IBD Patient Advocacy Organizations
- Connecting to Cure Crohn’s and Colitis
- Crohn’s and Colitis Australia
- Crohn’s and Colitis Canada
- Crohn’s and Colitis New Zealand
- Crohn’s and Colitis Foundation
- The European Federation of Crohn’s & Ulcerative Colitis Associations
- Girls With Guts
- IBDMoms (Amber is a co-founder)
[Music: IBD Dance Party]
I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.
Welcome to the second of two episodes exploring how we can help our kids, and ourselves, cope with back to school season. My guest for this discussion is Dr Brad Jerson who is a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. He is also a member of the Crohn’s and Colitis Foundation Connecticut Chapter Medical Advisory Committee.
The last episode focused on how we can talk to our kids about the new school year and how to model behavior for them, like mask wearing and hand hygiene. This episode we talk about how the school year will be different for kids who live with chronic illnesses, how the in-person school day is going to change, and some of the problems kids with IBD might encounter with symptoms like diarrhea and being granted appropriate bathroom access. We also touch on the behaviors that parents should watch out for in their kids and how to help those kids who feel scared to go back to school.
Shifting a little bit, though, into kids who live with a chronic illness like IBD. I’m wondering how this might be different for their families. And if there’s anything that kids with IBD and their parents should be thinking about with going back to school.
I’ve been remarkably impressed with the resilience that kids who are already living with chronic illnesses have shown during this pandemic. And I think that classifies under that category of the unwelcome blessings. Come along sometimes with a chronic illness, right, I still to this day, have never met a child who has said to me I’m so glad Dr. Jerson then I got diagnosed with IBD. This is my favorite part of my life, yet, a lot of them are able to find those silver linings in this and I think that’s actually part of this work is that we’re asking people to say, in this utter despair and uncertainty and cumulative anxiety, what are the things that you can actually feel grateful for, and a lot of kids and families living with IBD have said, we’re used to being hyper vigilant. We’re used to being prepared, we have been dealing with this uncertainty that comes along with living with this invisible chronic illness for a long time. So this actually doesn’t feel that different for us. We’ve got the skills that we need to get through this and I’m doing okay with this. That’s one part of it.
The other part of it is that we know that a lot of people who live with IBD also have a higher likelihood of having anxiety and sensitivities and Other areas as well. So they’ve been particularly keyed in to the natural rhythm of the stressors of this process and are really acutely aware of sort of the rollercoaster nature of this uncertainty and all of those moving plates that they feel like the ground is shaking below them, because they are so hyper vigilant to those things a lot of the times so I think the things that obviously, we need to be recognizing is that depending on kids medications and treatment plans and disease severity and treatment history, there are increased vulnerabilities surrounding this covid time period that we’ve shared very openly with them.
The good news is that at least the data that we are seeing from the secure IBD registry that has been collecting COVID-19 reports in patients living with IBD from around the world, the data is showing that fortunately, again, children tend to be doing relatively really well. with us. So from the factual data perspective, having IBD and going back to school doesn’t necessarily place at dramatically increased risk of getting covid, of course, depending on their individual treatment plans and medications that they might be on. But we also know that kids with IBD may have parents living with IBD and may have other family members living with IBD. So that’s an important consideration to recognize as well.
The general philosophy and approach that we are taking is that we want kids to return to their routines. We want them to be in school, and if we can identify that districts and states are putting resources and developing safe, evidence based thoughtful return for students, that that would be just as effective and meaningful for kids living with IBD as those without IBD to be able to have in place. But if you said to me, are you comfortable sending kids when Without a chronic illness back to a school who has not been following evidence based precautions in terms of monitoring, infection control and reducing community spread? My answer would emphatically be no. And particularly so with kids living with a chronic illness in general.
That seems right. And I’ve been impressed with all of the school plans that I’ve seen so far, I’ve kind of been trying to do a sampling of it just to get an idea of across the United States. What might be going on, and there are quite a few large districts that are have decided to go complete distance for now. So I guess we’ll just have to see how this all pans out. And if at some point they deem that it is appropriate to try a hybrid model or try fall in school later in the year.
Yeah. And I think it’s it’s very easy to sit removed from that situation and placed a very concrete judgment on what the plan should be. And one of the things that’s interesting throughout All this is being able to model for your kids and more. So for older adolescents, that this is a really complicated process of sending them back to school, it doesn’t register to them how many moving pieces are needing to take place right now to return that sense of normalcy. And how everyone in spite of diverging opinions typically is operating from a place of best intention for students and the people who work in schools.
But there are so many layers of complexity that’s better going into these districts plans that stepping back for a second also allows us to take a moment of gratitude and appreciation to the people who are trying to come up with a sense of stability and something that is so unstable. And this is particularly so in districts that have been hit more hard with COVID disproportionally than those who haven’t been and I think disparities in terms of COVID morbidity throughout this entire process across different racial and ethnic groups have been highly indicated with communities of color, unfortunately, suffering significantly higher rates of COVID-19 than those with illnesses and deaths.
And we know that lower income families are more likely to be significantly impacted during this pandemic. And where there are communities of greater social and economic burden. These conditions make them more vulnerable to being sick. So if we think of that as an inherent risk factor as well, we can’t just say, Well, too bad go back into that stuffed classroom that is under resourced at baseline to begin with because of the disproportionate allocation of funds and resources and let’s just hope for the best yet.
On the flip side, we also know that those communities are less likely to be able to benefit from distance learning programs as well, because of under sourced resource and access to technology or high speed internet and a lot of players says. So this is not an easy situation to solve. And I think it’s gaining a bit more perspective in terms of all of the factors that go into health maintenance. So particularly for families who have baseline chronic illnesses going into this, whether it’s IBD, or other autoimmune conditions, or asthma, or obesity, there are a tremendous number of factors that need to be considered when developing the individual plans for these families.
Yeah, I have a lot of respect for the people that are having to come up with these very long plans. And also for all of the teachers involved. Yeah, just the the teachers that I know that I’ve been talking with and understanding what their concerns are. So it’s not just that we have to implement the things that can help with decreasing possible transmission, but the way that they learn now is going to be completely different because they were learning in small groups, things like that. And now they’re not going to be able to do that anymore. So it’s also shifting the curriculum. And that’s another thing that I don’t really know how to sort of explain to my own kids that that that that will be different. The way that you learn in school is going to be different.
It’s a very interesting point. And I think we were finally coming into the era of appreciating the research that goes into valuable instruction and what makes kids thrive in different environments and how can we come up with different models of educational development. And now in some plans, we’re back to like the noose that at your desk you face forward and that is all you do and do not turn do not look. Do not walk close to the desk of your person. You sit there for 90 minutes and that is it until the next teacher comes into in this classroom, I’m actually grieving for a little bit of the incredible work that’s been done lately to appreciate different learning models. Because I think it is going to be very different. And, again, yes, kudos to the teachers who are going to be tasked to yet again, with improvising and coming up with something new and innovative to fit into this new peg that they are trying to fit things into.
[MUSIC: About IBD Emotional Piano]
Dr. Jerson, what about those kids who have formal or informal accommodations at school, it sounds like kids are going to be expected to stay in their classroom and maybe not move around as much. I can think of an example from my own life because I was a high schooler with IBD I had some teachers who told me I could leave class to use the bathroom if I needed to. But I can see as to how this type of accommodation may be more challenging right now.
One of the things that I’m really interested to see how this plays out is we know that use with IBD in schools often have to use the bathroom a little bit more frequently than they would like. And this becomes sort of part of their school routine, and also part of their just understanding and relationship with their teachers and school nurses of like, Hey, I may need to get up more often or I may need to take my test in a separate environment. I need specialized accommodations because of my chronic illness.
I’m very interested to see how the stigma associated with any presentation of physical illness makes people super hyper vigilance to not honoring the baseline accommodations of things. So what I mean by that is I’ve already And then a couple plans that say if a student presents with any signs of blah, blah, blah, blah, blah, and gi distress, they will be sent home immediately and asked to stay home for like three days. And we know that kids with with IBD with overlapping IBS or any sort of, you know, digestive sensitivities, sometimes various factors for whatever reasons, influencing them having a little bit more gi distress during the school day, whether it’s the early morning wakeups, or whether it’s the cafeteria lunches, or whether it’s the stress associated with exams, sometimes those flare of symptoms happen during the day, I would be really frustrated in advance.
But understanding if some of these new cautious guidelines get disproportionately applied to kids whose bodies present with an exacerbation of symptoms for a reason, unrelated to covid. So, in that situation, I’m really hoping that schools will realize this and honor predict consisting of 504 plans, and recognize that a GI symptom is not the same across every single students. And we need to have an individualized appreciation of this, this is probably going to require a higher level of parental advocacy than it has in the past. So I would encourage parents to take notes and check in with their students, not in an accusatory way, but just to see like, hey, are the normal accommodations that you’ve previously had still being recognized the way they should be? And are there any things that we need to have a conversation with the teachers about?
It’s sad to say, but the reality is that students with special education plans, whether that’s through the Individualized Education Plan, or from the medical accommodations through a 504 plan, are going to continue to be disproportionately affected by this pandemic because their needs are not going to be met as well as they should be. I can sit here and say on paper, like the law is the law, pandemic or not, these things need to be honored and I think at the core but, the schools acknowledge that as well. But it’s going to be a lot more difficult to improvise some of those accommodations. I’ve met some incredible special service coordinators across districts who are flexing such creative muscles to figure out how to weave in these individual learning accommodations into students plans within these last six months. And it’s amazing to see and it’s really cool.
But I recognize that not all districts are created equal. And some students are unfortunately going to be highly disproportionately affected by that. So we have to stand up for that we have to be their voice, we have to make sure that they’re not falling behind. Unfortunately, I haven’t seen any states say like, Hey, I’m taking all of my COVID funding and shoving it into special education resources. That would be lovely. We’re not there yet. But I really, really hope that that the districts are able to recognize that that is a need that will have to be addressed.
That’s really important for parents to keep in mind. Thank you so much for explaining all of that. And flagging it for us. So let’s talk for a minute, though about maybe some red flags, if you will, if there are things that we should be looking for in our kids or in ourselves in, you know, in parents as a as a community, yeah, that we should sort of, if we see it, stop and think to ourselves, this is something that we might need some outside help in order to deal with.
Certainly, so I think we’re, we’re always on the lookout for how different life changes and traumas and shifts in normal routines are going to affect our youth, and especially even ourselves as parents, and we have to use their behaviors as the judge and as sort of that guiding principles. So kids and teenagers are rarely going to come forward and say, you know, Mom, let me tell you that I’ve just been feeling really depressed lately, because unfortunately, there’s still a sense of misunderstanding of mental illness.
There’s a lack of appreciation of the variables that go into talking about this. And there’s still a stigma about it. But it can also be subtle and gradual. You know, because there were the normal things that made kids feel like themselves or connected to their peers. Kids like their groups, they like their identity, they have certain things that make them feel good about who they are. So whether it’s you’re an athlete, or you’re a musician or you’re an artist, or you’re funny or you are you give good hugs, like all of those things are going to be a little bit harder, potentially to key into as much so if you see your kids withdrawing a little bit more than usual and I’m this is now like separate withdrawal than mandated societal isolation, but actual social withdrawal of disconnecting from these new social supports of stopping doing the things that usually bring them joy.
We used to say like if the grades start to suffer, but that’s also a hard metric these days because the way they’re learning is going to be different. So it’s okay if their grades suffer a little bit. But let’s check in to see what the factors are that are influencing that. If they start presenting with more symptoms of bodily distress, more frequent headaches, more frequent stomach aches, difficulty sleeping, the teachers say that they’re having a really hard time concentrating or connecting within the school day.
The trouble is, is that a lot of these things are normal responses for kids when they are in the middle and also recovering from traumas. But it’s also still relevant data that we can ignore. So as we’re going into this new routine, one of the tricky things for parents is going to be how do we then come back to what it was like to be in a school building? How do we get to bed at the appropriate time? How do we wake up at the same time, and it’s going to be important to maintain that sense of structure every day of the week as we get back into this new job because for many students Especially those who are not doing live online instruction this past spring, they’ve been out of their normal routine for what will be six months. That’s a very long time.
So I would start kind of getting into the groove of rebuilding some of those things. Now, if you are concerned about your child or your teenager, it’s absolutely okay to say to them, I’m noticing that you’ve been doing things a little bit differently lately. Or I can tell that you haven’t been interested in this as many things as you used to be interested. It looks like you’re feeling a little bit depressed. And this seems like it’s really hard for you, can you tell me some of the things that have been more difficult, just pointing out observations and not demanding a conversation can be a really nice entry point into that conversation, especially teenagers, they tend to avoid talking about difficult things because the emotions that get attached to them seem really intense and often quite uncomfortable for them. But what ends up happening is if we don’t give them the space to be able to talk and verbalize that those feelings exist, actually is more isolating to them. And they feel like adults are not capable of handling these really strong feelings that they have. And this will lead to more internalizing and keeping those emotions in words for increased anxiety and depression.
So things are going to be different. And parents would find it useful to kind of check in every so often by taking a temperature of how things are going, what’s going on. And it shouldn’t be the forced, like, tell me how your day was or which kids weren’t wearing masks today, you know, but instead, like, oh, what was something surprising, unpleasant today that happened in school that you weren’t expecting to happen, given all that you’ve been going on? Or on the contrary? Oh, I know, you know, you started this this club today, what was different or what was harder than than it used to be for you? Or what was what was more challenging about learning this than usual today, and it creates a conversation, then it gives them permission to acknowledge that things are going to be different than usual.
Thank you so much, Dr Jerson, for coming on my show, and you know, I wish that we could have done it in person, that would have been fantastic. Maybe another time we can. But for now it was great to see you over the interwebs. And to have you come on and explain a lot about what we can do as parents to help our kids manage the coming school year.
Oh, it’s it’s this has been a real a real privilege of mine. And I’m so grateful to be invited. The the IBD community is a remarkably special place. And I’m really pleased to be able to work with such incredible people and thank you for all that you’re doing to spread this.
[MUSIC: About IBD Emotional Piano]
While editing these two episodes, there was another question that came up that I didn’t ask during the recording session. I felt as though it really needed to be addressed, so I emailed Dr Jerson and he was gracious enough to email me an answer. What I asked was, how can parents address the issue of kids who are worried or scared about returning to in-person school? And this was his response:
“Saying things like, “I wonder what you are predicting is going to happen when you go back to school” is a good lead-in to seeing where their minds are if they aren’t so eager to tell you. We need to provide them with the space for knowing it’s okay to have these feelings. When kids say they are afraid or they begin to show signs of anxiety and avoidance of returning to school, it’s important for adults to help make the space for kids to express these worries freely without judgment.
The fears and anxieties are likely going to be dependent on the child’s age – so the most important thing is frequent check-ins, tuning in to their emotions, and validating their experiences. We want to have empathy while still modeling confidence in the scientists and school leaders who are going to be working hard to make sure that steps are taken to keep kids as safe as possible.
Parents shouldn’t attempt to convince their kids away from their worries by saying things like “It’s going to be totally fine,” or “You shouldn’t worry about that.” Parents should practice reflective listening and say something like, “I know you are afraid. Let’s talk more about it.” Then parents can dispel any misconceptions or myths that may be brewing in kids’ minds – Then, they can actually try and problem solve or identify ways to practice and prepare for things that are in their control while acknowledging the things that are not. Learning mindfulness techniques and relaxation strategies can also help settle the internal storm that accompanies uncertainty. We want them to see that there are lot of things that still are in their control – mask wearing, hand hygiene, physical distancing. We also want to demystify some things that we can — potentially even get the chance to speak with their teachers or get a photo of what their classroom may look like ahead of time.
If parents continue to see behaviors that are abnormal for their child, like increased withdrawal, sleep disturbances, mood lability, or strong avoidance of new school routines – they should seek professional support and partner with either their school-based mental health team or a community-based licensed mental health professional. With treatment accessible through telehealth, it has never been simpler to connect with a therapist for these types of support.
For kids with chronic medical conditions, we can help students by allowing them to talk with their medical providers themselves and prepare questions they may have about their own risks.”
[Music: IBD Dance Party]
Between editing the first part of this series, Episode 77, about a week ago, and this one, the plan in my kids’ school district changed again. I imagine there are many communities across the country and the world where this is happening. It rather threw me for a loop. I thought I had a plan for us and now I’m back to trying to figure out what the best choice is for my family. As the school year goes on, we are going to need to pivot probably many more times. What’s clear is that basically no one is going to have their perfect situation. We are all doing the best we can with the information we have.
What’s also clear to me is that we are all tired. And that’s when we need to lean on each other the most. If you’re feeling overwhelmed, you can connect with your IBD Family, we have such a strong and helpful community on social media. There are also several IBD-specific apps that are maybe a little more private than the big social media channels. You can also connect to patient advocacy organizations for help and resources. I will link to as many of these as I can in the show notes, but if you are looking for something specific, you can always reach out to me through the contact page on my web site, or on social media as @aboutIBD. My DMs are always open, and I’ll do my best to help you out. Chances are, if I don’t know the answer to your question, I can at least help you find someone who does.
Thanks for listening, and remember, until next time, I want you to know more, About IBD.