Back To School with IBD
The kids going back to school is probably one of the most bittersweet moments of the year, outside of your little one’s birthday. You are excited to see them grow and advance, but they are growing and advancing! Each year brings new joys, surprises, and challenges. And for the parents of pediatric patients living with inflammatory bowel disease (IBD), unpredictability is an expectation. Because of this, letting your child out of your sight to spend 7 hours away from your productive care, is almost painful.
Although I am the IBD patient in my child/parent relationship with my LO, he also lives with a dangerous chronic condition: allergy induced asthma. The scariest thought is that someone will not pay close enough attention to the fact that he is struggling to breathe, and he could end up hospitalized. My anxiety when it comes to my child and the care of his chronic condition is borderline obsessive.
It takes a lot for me to be able to trust that you are going to do right by my child. I also know that my child has his own fears and anxieties when it comes to his condition and the hours that he will be at school. So, over time, we have taken steps to ensure that his condition is respected and cared for while I am away from him. Here are 5 steps to prepare your children to head back to school.
Most kids do not want other kids to know what is happening to them on the inside of their bodies. Reflecting back on puberty, I didn’t want the other girls to know that I got my menstrual cycle, even though we were all going through the same thing. As a patient who lived with an ostomy, I imagine that I would not have wanted anyone to know what was happening under my shirt as a pre-teen.
What’s amazing for pediatric patients now is we live in a time when there are plenty of options for school supplies that have multiple uses. Instead of having to put your child’s ostomy kit in a Ziploc bag, try using a pencil case to conceal the contents of the kit. Brands like Yoobi, AliExpress, and Pottery Barn Kids/Teens have great fabric cases in different shapes and designs that won’t stand out too much as anything more than a funky cool pencil case. Zip pouches and makeup cases can be purchased in different sizes to hold travel size toilet paper, flushable wipes, hand sanitizer, a change of underwear, and more. Brands like Babyganics make hand sanitizer wipes that are unscented and individually wrapped.
Change of clothes
At the beginning of each season pack a change of clothes, along with wipes and a plastic bag for soiled clothes, to send to school with your child. Something that is seasonally appropriate and can be stored easily in a classroom closet or locker. If your child is young, have a conversation with your child’s teacher about the need for a change of clothes to stay in the classroom, hidden from classmates, to be used in case of emergency.
If your child has an ostomy, I would also keep a kit, including a wafer and scissors either in the classroom or the nurse’s office. Keeping it in a locker that isn’t temperature controlled could end up ruining the paste or the wafer. It’s also not a sanitary option. In the event of an emergency, keeping a change of clothes and ostomy supplies in your child’s classroom or the nurse’s office will allow for better access. In the event of an emergency, the nurse is supposed to bring all meds and medical devices to the student holding area.
Conference before school begins
The first week of school is insanity. But your child’s condition knows no timelines. So, instead of trying to jam a conference in during the first couple of days of school, reach out before. Most administrators are in the office a week after school closes and a week or 2 before school begins. Take the time to take a meeting with an administrator, bring some literature on IBD, a letter from your child’s GI and the kits you’ve created for your child. Take the time to make them understand that your child’s absences, concerns, and needs are justified. You are inviting these adults on the team that will keep your child healthy. These are roles they should take seriously.
By inviting them and educating them you are opening their hearts and minds to your child, making it easier for them to perform whatever duties are necessary to ensure the health, safety, and mental well-being of your child. If you do not have your child’s teacher(s) contact information, you can take this time to ask for it so that you can connect with them about your child’s condition. Knowing that the lines of communication are open between you and the school will ease your child’s mind at going into a new situation. It will also allow you to sleep better at night.
A 504 plan
What is a Section 504 Plan? Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met. So, basically, this is a safeguard to prevent your child from falling behind due to excessive absences or failure to produce in class.
Each 504 plan is tailored to the child’s individual needs. You may ask for special accommodations such as access to the bathroom without permission, carrying medications, and ostomy supplies, longer testing times, and so on. This is a plan you, your child’s teacher, and your child’s administrator will come up with together to make sure that your child is comfortable as they continue through school.
Listen to your child
As a mother, I always feel like I need to stay two steps in front of my son and his condition. As a patient, I sometimes feel as if I’m being smothered by my mother. So, I often will take a step back and listen to my child. We discuss symptoms, causes and effect, and his anxieties. And although “Mommy knows best” is often sitting on the tip of my tongue, I have to hold it. Because I have to remember that I am not the patient.
And although I have given him life and his life is more important to me than my own, it is not my life. It’s his. And I have to prepare him to live as an adult without me, with his disease. He has to be able to communicate to others what he is feeling. He has to be able to make decisions about things concerning his disease. Yes, he is a child. But he is a human, with feelings and thoughts about living with a chronic condition. I have to respect that.
A new school year brings all kinds of emotions as the years press on. I wish all of you mommies restful nights and strong coffee to get you through until June. May the Mom Force Be With You!
Do you keep a food diary to help manage symptoms?