How will my child’s vasculitis affect his/her education?
The information in this section focuses on the U.S. educational system but we welcome additional information/suggestions from other parts of the world as we recognize the importance of education for all of our younger patients. Please email your suggestions/recommendations to the Vasculitis Foundation office.
New Resource: The Patient Advisory Council for IBD Accommodations and members of the ImproveCareNow Community have created an excellent Accommodations Tookit for parents and patients seeking information on balancing school and life with a chronic illness. Although not specific for patients with vasculitis, the toolkit offers good information.
What is the new normal, what is active disease?
Pediatric/young adults, with their parents/guardians, will need to address the issue of unknown disease and translate what is “normal” and what is active disease and how it will impact the student’s learning.
It is sometimes difficult for parents to assess when a vasculitis disease is active or not, especially in the case where active disease or medication side effects has caused temporary or permanent harm to the body. Here a diminished capacity for certain activities can be misinterpreted as active disease because of the perception that the child was able to do this before they were sick, so now that their disease is not active they should be able to do it again just as before. Recovery is something that does not happen overnight and in some cases may never happen fully, but just because the child has not recovered to the point they were at before they became sick is not necessarily an indication of active disease.
For example, when a family is new to a vasculitis disease it can be difficult trying to determine if a child just has a cold or is just tired or if it is more active disease. In all situations it is best to keep an objective view. If parents fly off the handle with every minor change in heath it can cause stress for the child who may in turn try to hide health problems in order to avoid this reaction. If you have concerns it is best to contact your child’s doctor and describe the situation to ask their opinion of what course of action you should take.
Communication is critical
It is important for the child and his/her parents or guardian communicate with each other as well as the school staff to ensure everyone understands the situation and possible challenges. Contact your child’s school and explain the situation; remember that many people have never even heard of vasculitis so you will need to explain the disease also. (The Vasculitis Foundation can provide materials to help educate the school community.)
In the United States all children are guaranteed a K-12 education. If a child is unable to attend school due to a medical reason then the school must provide accommodations. These can range from allowing a student to make up missed work from their time absent or providing a tutor to come to the child’s home if they will be out for a significant amount of time.
Most colleges or universities have a department for students with disabilities. If accommodations are required these departments are set up to help meet the needs of students.
Communicate with the school faculty and staff
All schools are different and all teachers in each of these schools are different as well. As such there is no hard and fast rule for how to work with every person at a school to make sure accommodations are properly met. Generally most teachers and school staff will work with students if they understand there is an issue that requires certain accommodations.
On the other hand, there is always the possibility that someone will be encountered that is not as willing to work around issues. Cases such as these can be stressful as it is hard to make someone work with you who does not want to. In this case having a 504 plan or Individualized Education Program (IEP) in place is the best course for making sure accommodations that are needed are made. If a situation arises where problems persist it is generally possible to have a student transferred to a different teacher in most schools, or in the case where a school is having trouble accommodating a student’s needs transferring schools may become necessary. These kinds of situations are rare, but they do occur from time to time.
It is also important to note that not every school is able to make every accommodation that a student may need. Especially in the case of smaller school districts that lack funding or diversity to facilitate certain accommodations. In these cases working with the school and having open and frequent communication about what can be done and what the best options for the student are can be very helpful in making sure all needs are met.
Returning to school; limited attendance hours; setting expectations and asking for what you need
It is an unfortunate reality that with a vasculitis disease there may come a time when attending school full-time or at all may simple not be possible. It is very important at times like this to stay in contact with the school and to work with the school addressing the estimated length of absence. Different time tables may make different options more feasible depending on a variety of factors including, but not limited to: grade level, time of year, state and district standards to be met, previous classes taken, and classes required to meet standards. Each case is different and working with the student’s school to come up with a plan is the best option.
When returning to school it may become a necessity to come back as a part-time student. This can usually be accommodated allowing a student to take core classes only. Again, this is an option that needs to be worked out with the school staff to make sure that the student is meeting their education requirements the best that they are able to.
With any option it is important to understand that certain requirements must be met in order to achieve graduation. It may become a reality that an “on-time” graduation is not an achievable goal. When this happens it is always important to remember that good heath is more important than making it through high school in four years.
College and University
In college and university settings the option of taking a reduced schedule is much easier to achieve. Students can simple take part-time status and attend the number of classes that they feel they are able to at the time. Part-time status may affect aspects such as tuition funds (grants, scholarships, loans, or student housing, etc.). It is important to contact the school’s department for students with disabilities to find out exactly what attending school part-time would mean as it may vary for school to school and case to case.
If a full withdrawal is required for one or more terms at college or university make sure to contact the school to address the process of temporary withdrawal and return. This process and the requirements for return can vary between institutions.
Housing and Testing Location Accommodations
Many of our young adult patients request private living arrangements due to compromised immune systems. Most schools and universities are able to make some housing accommodations. Patients may also request accommodation for testing locations (i.e. if the patient is home sick from college and needs to take finals at home rather than at the school).
Setting guidelines for leaving school early (if they are too tired and need to go home)
Going through treatment is often a massive undertaking for the body and mind. As such there are times when it will be simply to exhausting to carry on. This fact is something that needs to be addressed before it becomes an issue so that accommodations are already set up. If it is understood by the school that this is a possibility exhaustion from treatment is a possibility and that the student may need to be excused from school at times because of it an issue will probably never arise from it. Again, make sure that this is something that is addressed early on so that the steps that are to be taken if and when a student reaches this point can easily be carried out. If episodes that require early leave from school are result of treatment, it is also important to make sure that this is not abused. It may become tempting to throw your hands up and say, “it’s too much I’m done with this for today”, but keep in mind that students are still responsible for completing required school work and too much time away from class can very much negatively affect your performance.
Proactive Measures and Precautions
Schools are a confined environment where many people from across a community are brought together for several hours a day. Colds, flu, and other nasty contagions are spread throughout the building every day. This can be particularly troubling to students who are dealing with a suppressed immune system resulting from medical treatment. There are several steps that can be taken to help minimize exposure.
Developing good habits
Developing habits that minimize risk of exposure are a good place to start. Little things such as not touching things in school that you don’t need to. Making sure not to wipe your eyes or mouth with your bare hands. Washing hands frequently using warm water and soap. Avoiding others who are ill.
This is as simple as carrying around alcohol wipes to wipe down your desk, table, and/or chair in each class. You can also ask your teacher if they would be willing to make sure desks and commonly used items are wiped down frequently to help prevent illness.
Bringing your own materials
While it is always a good idea to make sure you have your own paper, pens, and pencils at school, other items may also be considered to avoid contamination. In the classroom there are many items that are shared between students. Making sure to have your own means that you are able to control who handles them and how. Things like class books, calculators, tools, keyboards, and other small items that are shared within a classroom are passed from students to student each day. If possible consider bringing your own or making sure that such items are cleaned regularly.
Wearing a mask
A medical mask helps to prevent taking in airborne illnesses. While it may look goofy, it will help in limiting the amount of airborne contagions that you breathe in throughout the day.
Letting others know
Informing those around you, especially your teachers and school staff, of your condition and why you need these precautions can be very helpful. Not only does it allow for others to modify their behavior to help you avoid infection, but it also explains why you are not acting the same and using the same materials as other students. With this you don’t have to go into full detail if you don’t wish to, but only need to tell others what you want them to know and what you feel is important for them to need to know to keep you healthy.
Generally when someone is sick they get better after a while and they are done with it. This is what people expect, but that is not always the case with patients with vasculitis. Many patients look and act just like everyone else most of the time, but this does not mean that they are perfectly healthy. Explaining this to people up front can cut down on many problems later on. It is often times uncomfortable for students to approach the subject with teachers and peers. If this is the case start by talking with a few select friends, and talk with a trusted teacher or counselor and ask them if they would speak with the rest of your teachers so that everyone is on the same page. Not every detail needs to be shared, only share what you are comfortable with or information that is important to know. If others are having trouble understanding, try relating it to more common known medical disabilities such as diabetes. Those with diabetes look and act normal for the most part, but they have an underlying condition that requires them to modify their behaviors and seek special accommodations.
There are several helpful sites for pediatric/young adults to keep up with their education if they cannot attend regular school days:
If a student is unable to attend regular classes, the Internet provides several useful tools to assist with keeping up with studies. Edmodo is a free website where educators can set up pages for classes where students are able to receive, view, and turn in assignments from any computer with an Internet connection. Edmodo also has options for students and teachers to communicate questions and post notes or documents from lessons. The format and feel of the Edmodo site is a lot like a Facebook page designed for classroom learning.
There are also several education sites set up to help with understanding of concepts. Khan Academy is a site that provides in-depth explanations with hundreds of hours of video in the areas or mathematics, science, humanities, computer science, and test prep. Educational and topic-related forums are also a good place to go to communicate with others about the subject at hand. These types of sites can usually be found with a quick Google search.
Managing the Stress of Chronic Disease at College
Going off to college comes with its own built-in set of stresses. You’re away from home, possibly for the first time. You have to get used to new surroundings, different people, and a lot more work than high school. On top of all these challenges, if you’re living with a chronic disease like diabetes, epilepsy, or arthritis you’ll also have to deal with the stress of managing your condition. Making doctors’ appointments, refilling prescriptions, and remembering to take your medications — all these need to be penciled into an already overfilled calendar of classes, homework, and parties.
Invisible Disabilities and Postsecondary
Education Accommodations and Universal Design
Many students on post secondary campuses have disabilities that are not easily noticed. This situation can lead to misunderstandings. As articulated by Beatrice Awoniyi, director and assistant dean for the Student Disability Resource Center at Florida State University, “You may look at a student and you say, you know, you look like every other student in the class, what do you mean you need note-taking? What do you mean you need extra time on the test? It might not be apparent to you as a faculty member that a student has a disability, but that disability may impact their participation in the class.”
This blog is written by a 21-year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Auto-inflammatory diseases. Going to college can be a scary experience for anyone, but throw a chronic illness (or multiple) into that mix and you’re bound to feel lost at some point.
U.S. Department of Education
Transition of Students With Disabilities
To Postsecondary Education: A Guide for High School Educators