Going to School With Acid Reflux: A Guide for Parents
Question: What accommodations are needed to help my child with reflux at school?
Parents, teachers and students will need to work together to figure out an individual plan for managing reflux at school. Some children need frequent, small meals or access to foods and drinks throughout the day rather than a pre-determined lunch period. Other children benefit from eating slowly as well as bringing food from home for meals and special celebrations (if the child is on a special diet). Access to the restroom, water fountain or a water bottle may be necessary. Some children have a permanent pass for the nurse and restroom. Remember to discuss plans ahead of time for fieldtrips, half days and other days when the schedule may be modified. A written plan in the notes for a substitute teacher can help the child and the teacher enormously.
Question: Does reflux affect learning?
Parents and teachers have reported that a child who is in pain from reflux is less able to concentrate on schoolwork. Children with chronic, daily symptoms may be prone to dehydration, low blood sugar, fatigue and malnutrition, leading to poor performance. Some parents and teachers report inconsistent school performance, acting out behavior, and low frustration tolerance.
Question: What about the child with complex medical issues?
A few children with reflux have severe, daily reflux symptoms that interfere with learning and school attendance. In addition, these children may have complications from their reflux including: asthma, recurrent illnesses, gastrostomy tubes, nasograstric tubes and feeding pumps. Children with chronic, complex medical needs due to reflux that adversely affects learning may need a Section 504 plan to plan and coordinate special accommodations at school.
Question: What is a section 504 plan?
Section 504 is part of a United States civil right law to ensure disabled children and adults have equal access to school/work. However, there is a provision in the law to ensure equal access and opportunity to education for children with a medical condition, even in the absence of a disability if they have a “health impairment” that can impact their school performance. For instance, if a child has acid reflux (medical condition) that is so severe that the child is weak or irritable and cannot focus on learning, he/she may need special accommodations under a Section 504 plan to ensure equal opportunity to receive an education. Other reasons may include: poor endurance, frequent absences due to illnesses or medical treatment, poor sleep leading to daytime fatigue, and time for medical treatments such as tube feedings, snacks and medications. Special accommodations need to be identified that will allow the child to participate in school without being penalized due to the medical condition. For instance, if a child needs to have a tube feeding every day during math class, the child would probably receive a failing grade due to missed assignments and poor test scores. With a Section 504 plan, the school and the family would develop a plan for providing the tube feeding and providing math instruction. Remember, many children with acid reflux have a school-nursing plan in place to specify medical needs and school/classroom accommodations. A Section 504 plan is probably warranted if the child has complex medical needs or if the school has not been able to provide care and treatment under a nursing plan.
Question: How do I set up a Section 504 plan for my child?
It is likely that the school will not offer information about a Section 504 plan and you will have to seek information from the school principal, the nurse or the school system’s special education/504 compliance officer. The reality is, the Section 504 plan obligates the school to implement the school action plan. Failure to do so is a violation of your child’s civil right and is punishable by law. Some parents have reported that the school staff offered a school based plan rather than a Section 504 plan. This may be fine on a temporary basis, but you could run into serious trouble if there is a change of teachers, administrative personnel or when your child moves on to the next school. Parents need to know their rights and be an advocate for their child. Many parents of children with reflux are used to being advocates and have been fully trained “on the job”. Parents may want to visit www.wrightslaw.com for information on Section 504 plans. Be sure to read the articles titled, “ Advocating for your Child: Getting Started.” and, “The Parent Advocate: First Steps”.
A final word:
Children with acid reflux have already learned a great deal about life. They have endured pain and discomfort and learned to get out of bed every morning, eager to start the day. They embrace life fully and that includes slinging a backpack over their shoulder and heading off to school. While their backpack may contain special foods, cans of Pediasure, extensive notes from mommy and a feeding pump, we know that for the most part they just blend into the crowd. But it didn’t just happen that way. As parents, we have helped our children with acid reflux have a positive attitude and sought aggressive treatment so they can function and enjoy life to its fullest After all of the planning and preparation, we should feel proud of our children and proud of ourselves for helping them to go to school.
“The teacher thought Rob was trying to be disruptive by coughing and clearing his throat too much. Once she realized that was part of his reflux, she didn’t give him a hard time again.”
“When I talk to his teacher, I explain that although reflux is uncomfortable, this is unfortunately “normal” for him.”
“I am slowly learning how much control over reflux I have at home and how it is important to communicate that information to the school.”
“I felt less anxious about sending my daughter to school after I spoke with the school nurse and the teacher.”
“As a parent I wanted my child to be as normal as possible so I did not go into much detail with my child’s kindergarten teacher. I simply stated she had reflux and asthma. I quickly learned this was not a smart approach. The reality is my child is different and she has some special needs. Within the first two months of school (at my child’s request due to discomfort and pain) I made special arrangements for my child to take rest time on a wedge instead of a flat mat I also send in a special snack which is eaten around 11am to prevent “blood sugar crash”. And lastly I have made arrangements for her to use the restroom more frequently and for longer durations. I was very surprised to see how receptive both the nurse and the teacher were to the requests. In the end I learned what really matters is that my child now comes home from school happy, pleasant and without intense stomach and chest pain.”
“ My daughter had a nursing plan for attending elementary school, including a note from her gastroenterologist specifying that she could have food and drinks as needed during the day. The plan was not followed and she endured standardized testing without access to her snack and water bottle. When the test results came back showing poor performance in all areas, I was really worried. Was she significantly delayed in her learning or was her frequent snacking that important for her to demonstrate her abilities? At that point, I requested testing under a Section 504 plan. She re-tested at or above age level in all areas when she was allowed to have snacks and water, which proves that her reflux was affecting her grades. We developed a Section 504 plan for her due to her medical needs under “Other Health Impaired”. Now the school informs me when she is being tested and monitors her access to snacks.”
“The school principal asked me to go on every field trip so that I can help my daughter eat and use the restroom as needed.”
“ My son has a severe allergy to soy, a common ingredient in many foods. I was concerned that the staff of his preschool or a substitute would give him a food containing soy by accident. I made a sign with a picture of my son that reads, “ My name is Sam. I am very allergic to soy. Please read ALL package labels before giving me my snack. I will get very sick if I eat soy and may have trouble breathing. If I ever vomit or have trouble breathing after a meal, call 911.”
From the mother of a teen with reflux:
“ Many schools have a policy that you can’t participate in an after school activity on days you have been absent. The school administration has to be made to understand how important it is for GERD kids to be included in the school loop as much as possible. Due to the absences our kids endure from GERD, it is a real challenge to stay connected to the school social scene. If our kids feel well enough to make an after school activity, they should be allowed to do so regardless of whether or not they were in attendance.”
Pediatric Gastroesophageal Reflux:
PAGER, Pediatric/Adolescent Gastroesophageal Reflux Association, P.O.Box 7728, Silver Spring, MD 20907 301-601-9541, www.reflux.org, email@example.com.
Section 504 Plans:
Section 504 plan: Go to www.wrightslaw.com. Link to articles: Advocating for your child: Getting Started, and The Parent Advocate: First Steps.
Consent form, Emergency Information Form for Children with Special Needs, www.acep.org
Many thanks to the following parents who contributed to this pamphlet: Tami Peavy, Annette Pic, Laura Barmby
This document is copyrighted by PAGER Association. It may be copied, posted on other web sites or used in printed materials with the following statment: Copyright PAGER Association 2005. Used with permission. Original document can be viewed at www.reflux.org
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