(By Jill Osborne) School has started here in California and for children and teens with IC it can create a lot of anxiety and uncertainty. Will they be given restroom access? Will they have teachers who support them? Will they make new friends and fit in? Will the bus ride be comfortable? Your goal as a parent is to nurture and inspire them. School should be a source of happiness, dignity and pride. IC, however, can create obstacles, particularly with restroom access.
Unsupervised restrooms are a safety and school liability issue everywhere. ICN Support Leader Jennifer, a high school teacher in California, said “While teachers and schools are not intentionally hostile towards children with documented medical conditions, they may be worried about the security of students who roam the hallways alone.”
In Jennifer’s school, she’s not allowed to let students use the restroom in the first and the last ten minutes of each class. Students who request to use the restroom during class are told that they must serve a 15 minute detention, usually during lunch or after school. This deters those students who are trying to get out of class to commit problems on campus, but it also penalizes students who legitimately need to use the restroom.
One logical advocate for a child with IC is the school nurse, who often has a restroom available in the nursing office. But, as Jennifer pointed out, nurses are now rarely seen on campus. In her school, there is no nursing office. Five nurses serve a school district of 50,000 students and are rarely seen on campus. If no nurse is available, can a student with IC use the restroom in the school office? In Jennifer’s school, the answer was “No because that bathroom had also been vandalized.”
Given this difficult environment, a young IC patient can feel very vulnerable, embarrassed and alone. One ICN member shared that she dropped out of high school in her junior year because she was not allowed to use the restroom often enough and often struggled with severe pain in the classroom. She did, however, eventually graduate.
Thus, we’ve put our heads together to come up with some tips that you can use to advocate for your child with school administrators, personnel and teachers. Here are some ideas:
Bus Rides Can Be Challenging
IC patients of all ages report that bus rides can trigger bladder symptoms. Why? It’s usually due to the stiff, jarring and bouncy suspension. In fact, we’ve worked with a number of school bus drivers with IC who also experienced discomfort.
The length of the bus ride is also important. If it’s longer than 30 minutes and your child needs to use the restroom that often, it might be very difficult and uncomfortable for them. Being driven to school in a car that has a smoother ride and could stop for the bathroom would be more sen- sitive to your child’s needs.
If the school bus is your only option, it may be helpful if your child sits in the first half of the bus, which tends to bounce less than the last half of the bus. Fair warning – if your child is having a moderate or severe IC flare, a school bus ride could aggravate their bladder symptoms and/or pain dramatically. Be sensitive to that.
Kindergarten & Elementary School Students
- Before school starts, request a brief joint meeting with the school principal or nurse, if available. Explain that your child has interstitial cystitis and will require, on occasion, immediate restroom access. Bring some articles on IC to share. You can find several on our website at: https://www.ic-network.com/professionals/cme.html
- Ask the principal and/or nurse to educate other school staff, aides and teachers so that if your child is visiting in another classroom or the library, they can seek restroom access without embarrassment.
- Before school starts or in the first few days, request a parent-teacher conference. Emphasize that a child with interstitial cystitis is not just seeking attention or asking for special privileges. An IC patient has an immediate and urgent need to use the restroom due to irritation, inflammation and/or ulcers in their bladder. The longer the delay, the more irritation and discomfort the student will experience, including potentially severe pain. Asking a student to wait even five minutes for recess can be very uncomfortable.
- Ask the teacher to create a non-embarassing way for your child to ask for restroom access. It might be as simple as holding up a book, a pencil or standing by the door. Forcing the child to ask to use the restroom in front of the other stu- dents can be very embarassing.
- Ask the teacher to leave a note for any substitute teachers about your child’s need for immediate rest- room access.
- Advise the teacher that physical education might be challenging for your child if they are having a bad bladder day. Running and jumping could trigger more discomfort and, for some children, leakage. On those days, ask the teacher to give your child a supportive role, like ball monitor, so that your child can stillbe involved and included.
- Encourage the teacher to report back to you any unusual symptoms, such as a dramatic increase in restroom requests so that you can monitor your childs symptoms and behavior.
- The first day of school often produces anxiety for new students, especially if they have a special need. Before classes start, talk with your child about school. Emphasize how fun it can be and how nice it is to make new friends. Remind them that their teachers can be helpful and should always be treated with respect.
- If possible, introduce your child to the teacher before school starts so that the three of you can talk about restroom access and any other concerns that your child may have.
- Remind your child that IC is not their fault and that they have done nothing wrong. Acknowledge the fact that it might be embarrassing to them and seek ways to reduce that embarrassment. Let them know that it is okay to ask to use the restroom as often as they need to. Let them know that school nurse and/or office can help them if they are feeling poorly. There is no shame nor blame in having a bladder with an “owie.”
- For after school activities such as Scouting, 4-H or sports, take a moment and pull the leader or coach aside to explain IC and that your child will need restroom access. Remind them that asking your child to “hold it” can result in more severe symptoms and possibly pain. Ask for their support and for dignity for your child.
Middle School and Teens With IC
A teenager’s life is often filled with drama and difficult lessons learned. Throw in the trials and tribulations of puberty AND IC, teens can be a source of great puzzlement and/or concern to their parents. Try to remember that teens are easily embarrassed if not mortified when parents get involved with school. Be discreet when working with school staff and be sensitive to the vulnerable feelings that your teen may have.
Because most middle and high schools have several classes throughout the day, many students find it much easier to adapt, that is if the restrooms are open. Classes are usually about an hour long, thus providing good opportunities to use the facilities. However, some schools use the “block system” that can have classes up to two hours long that can certainly be a problem for both students and teachers with IC.
Your first stop should be with the school administration, preferably the principal or vice principal. Bring a letter or note from your doctor or pediatrician explaining that your teen may require frequent and immediate restroom access. One ICN Support Group Leader LeeLee suggested having the principal sign it, then photocopy it for any school staff and teachers. Give a copy to your teen to carry in their backpack so that it can be produced when necessary.
Bring some educational articles on IC to help educate staff about urological disorders. We have some excellent professional articles on our website that are perfect for educating others about IC. The odds are there may be at least one other student or staff member with IC who may benefit from this information.
Ask the principal how you and she/he can raise awareness with both teachers and personnel so that your teen’s dignity is maintained and not made to feel embarrassed by asking to use the restroom.
Ask for an introduction to the school nurse if there is one on campus. Ask what the school’s policies are for medical outreach. Can your student come to the nursing or school office to use their restroom?? Can your student ask the nurse, school counselor or principal to advocate for them if there is a prob- lem with a staff member??
Most schools will not allow medications on campus. So, if your teen regularly uses a medication during the day, how does the nurse or office staff distribute it?
Gym and PE classes are vital to your teen’s physical and mental well being. Exercise is important for a growing teenager and there are many exercises that may not irritate the bladder, such as: swimming, softball, bowling, golf, dancing, ballet, badminton and tennis.
During IC flares some exercises can be uncomfortable. You’ll probably want to talk with the head of the PE department and ask about options. If your teen is having a bad day, can they have a different role (i.e. umpire) or can they avoid the exercises which jar the bladder (i.e. running, jumping etc.)?? Maybe your teen can help in the gym office or supply room on those days? A fun job on campus is being a “stats” keeper for the basketball or football team. Why not?
School Field Trips
If your child or teen is going on a field trip, make sure that you ask for accommodation for their restroom access. Yes, it can be very embarrassing for the school bus to stop for one student but it can work. Better yet, most schools now have parents who drive children in their family cars. This is ideal for your child. If you have any field trips coming up, you may want to consider offering to be a driver to help make restroom access easier. Your child will greatly appreciate your help.
Absences From School
IC is characterized by periods of remission and flare. Obviously on days when your child is feeling well or having mild symptoms, school is a must. The great thing about school is that it’s often so distracting, your child may not even notice their bladder problems.
But when symptoms are moderate to severe, it’s important to listen to your child. If they’ve been up that night, unable to sleep, and their bladder symptoms are upsetting them, it might be reasonable to ask if they can do a half day? If a half day seems too much, a day at home might be necessary.
Fair warning. Schools and school districts may have different policies about absences. Some school atten- dance computer systems will auto- matically dock course credits after a certain number of periods are missed. Some schools also require a doctor’s note for each absence after a certain number of absences. These issues will need to be addressed with the school administration preferably before any negative consequence is given to your child.
Remember that many flares are caused by diet. By following the IC dietary guidelines, you might be able to reduce absences dramatically.
Home instruction is made available by schools to selected students. Jennifer offered “A student who is missing classes frequently may need to make arrangements for home instruction, in which a teacher is assigned by the school district to meet with the student at home and act as liaison with the school. The home instruction teacher will usually confer with the student’s regular instructors to best assist the stu- dent in keeping up with course requirements.”
Assess School Progress Periodically
A few days or weeks after school begins and throughout the year, ask your child how school is going.
• Is anyone giving them a hard time about using the restroom??
• Are they being teased??
• Is the bus ride comfortable?
• Is there a time of day when their symptoms seem better or worse?
• Do they feel that their bladder symptoms are getting better or worse?
• Is there anything about school that they would change?
• Are they socializing and making friends?
• Are they involved in afterschool programs?
• Are their grades good??
• Most of all, are they smiling and happy after school?
Living with IC as a child or teen can feel overwhelming but with the unconditional support of family friends, it can be much much easier. Dare your child to dream. There are space scientists living with IC, actors, actresses, judges, attorneys, teachers, nurses and doctors. IC doesn’t mean that they can’t have an amazing career or a wonderful family of their own.
As their parents, it’s your job to nurture them, hug them, push them when needed and give them a soft place to fall when they are in pain. Working together, you can get through this. There is always great hope!!
Did we miss anything?? Do you have any more suggestions or ideas for other parents?? Please share your story here or send me an email at: firstname.lastname@example.org.