Advocating for Your Chronically Ill Child Within The School Setting
Diane Ketlak, M.A.-School Psychologist, W.S. Parker Middle School, Reading MA
School is a huge part of any child’s would, a lifetime to friends, learning and the future. Children and adolescents spend an average of 35 hours each week at school. Although all students experience physical, psychological and social pressures, these pressures are significantly intensified for students with chronic illnesses such as inflammatory bowel disease (IBD). My experience as a school psychologist in a middle school setting has allowed me to support and coordinate educational services for many youngsters suffering from IBD as well as other chronic illnesses. Compared to the overwhelming medical issues surrounding a youngster’s battle with chronic illness, school may seem less important and an added burden. But successful school adjustment is an essential part of a child’s well-being, allowing them to stay connected to a normal life and bolstering their sense of independence, self-esteem and accomplishment. Although specific circumstances will differ for each child and school systems will vary somewhat in their policies and procedures, there are several ways in which you can advocate for your child at school and play a key role in establishing a successful school experience.
Start communicating with school staff right away
In a middle school or high school setting it can be difficult to communicate effectively with all of your child’s teachers so it is advisable to first contact either the school nurse, your child’s guidance counselor, school psychologist, special education coordinator or principal. They can play a significant role in coordinating information so that all staff who have contact with your child are sensitized to critical information. The school secretary, for example, plays a critical role in helping your child cope with the demands of a school day, and should be kept informed about special health needs.
Be sure to keep the school nurse updated with accurate information about medication, special health needs, necessary information releases and emergency procedures and phone numbers.
Don’t be afraid to ask for a team meeting so that you can speak directly to all of your child’s teachers and support staff. Keep in mind that the information you convey directly about your child is always more powerful than information which is delivered second hand. This also gives you an opportunity to distribute literature about your child’s illness and treatment and educate staff about the emotional and social issues affecting your child at school. A team conference is a terrific opportunity to clarify necessary classroom modifications, discuss how teachers will respond to questions from classmates, deal with absences and coordinate tutorial services if necessary. Remember that school staff will very often have prior experiences in working with chronically ill children and may offer some suggestions and advice which can be very reassuring to you. Older children and adolescents should be invited a team meeting (or a portion of the Meeting). This can be a wonderful opportunity for students to share their feelings and concerns directly and receive positive feedback and reassurance from their teachers. It is crucial to recognize that the more knowledge a school staff has about what your child is going through, the more sensitive and instrumental they can be in helping him/her to deal with the difficult obstacles he/she will face as a result of his/her chronic illness.
It may be helpful to identify someone as the main contact person at the school, this can simplify things and establish an on-going system of communication. Keep in mind, however, that the roles of school staff are flexible and if your child feels close to a particular teacher for example, that person may be in the best position to provide the guidance and coordinate support services for your child.
The issue of communication is particularly sensitive for adolescents. Many students may be reluctant to let the school know about their medical condition. Adolescents often take their cues from adults, if they know that their parents are comfortable sharing information openly, they will be more at ease themselves. It may also help to explain to students that accurate information about their illness is actually less frightening than their classmates than rumors. This is particularly important when students are making a transition to a new school. The better informed classmates are, the less likely they will be to alienate, tease or harass a chronically ill student. As chronically ill students enter adolescence, feelings of insecurity may develop because they see themselves as being different from their peers. For example, students with IBD are coping with a myriad of related conditions such as impaired growth, delayed sexual development, restricted diet, medication side effects and fatigue, to mention just a few. They need reassurance that teachers will be respectful of their need for privacy, will provide opportunities for independence whenever possible and will not draw attention to any of the modifications necessary. For example, a student with IBD will need access to a private bathroom and should be allowed to leave the classroom at any time without asking permission. When classmates notice that a student with a chronic illness is accommodated in some way, they should be encouraged to ask questions. Likewise, chronically ill students should be encouraged to share their knowledge and feelings about their medical conditions to whatever degree they are comfortable with. It is not unusual to include the study of major chronic illnesses in health and science curriculum. Professionals with knowledge of a particular illness might be invited to make a presentation to a class or the student may prefer to answer questions and to discuss their illness directly. Students need to know that their teachers are willing to take the time to understand their disease, to talk about it and to ask questions. It can be very therapeutic for a student with a chronic illness to write about their experiences. This allows them an opportunity to share what is so close and personal to them in an indirect way and generate understanding from their classmates. In all situations,, the student should be given full control as to what they are comfortable sharing.
And finally, with respect to communication, their may be times when parents need to alert school staff about their concerns in confidence. It can be very helpful to a teacher to know that a youngster is having a tough day, or is feeling particularly stressed, and subsequently can extend the deadline on a project or allow a makeup test in a natural manner without needing to draw any attention to the situation. It is so important to respect a student’s sense of pride and independence. So often students with chronic illness will work extremely hard to overcompensate for their illness and try to maintain an unusual amount of control and perfection with respect to their school accomplishments. Parents need permission to sometimes work behind the scenes in order to moderate the amount of stress that their children take on without defeating their will. Teacher and school staff are acutely aware when situations should be kept confidential and will honor such requests.
Ask teachers and school staff to help limit the negative social and emotional effects of a chronic illness by making some general school modifications.
Although schools and districts may vary in the level of available health care assistance, federal law requires public schools to provide chronically ill students with a “free and appropriate education in the least restrictive environment.” Special services, based on the type of illness and its effects, also are endured. These services may include educational support, adaptive physical education, transportation, audiology, recreation, school health serviced, psychological services, physical and occupational therapy, speech and language therapy, assistive technology, and others. Although many students with chronic illness can and should attend school without any program changed, schools should evaluate a child’s special needs and develop a plan known as an individualized educational plan (IEP) for satisfying any medical requirements. Parents of chronically ill students may rightfully expect these plans to be developed and enacted. If they believe that their child’s rights are not being protected or their child’s needs are not being met, they may appeal to the courts. Parents should feel comfortable calling a conference or team meeting whenever it seems to be needed. By communicating openly and sharing ideas about strategies to assist a student, you can maximize the chances for a rewarding school experience and a more successful adjustment to adolescence.
Normalize your child’s school experience as much as possible
It is critical that students with chronic illness become involved in school activities as much as possible. A major consideration will be to provide situations in which the student can manage his/her condition easily and without embarrassment. For example, knowing ahead of time that a class is planning a party allow a parent of a youngster with IBD to have some input into the types of food served. When dealing with adolescents, it is critical that school staff be supportive without being overly protective. Teenagers are very self-conscious and feel embarrassed and resentful if supervision is too obvious and not handled in a respectful and subtle manner. Teachers must also be careful not to lower standards for students with chronic illness which may cause resentment from classmates, defeat their feelings of accomplishment, and can result in lowered self-esteem and increased chances of dropping out of school. When students are absent for long periods of time, teachers and support staff should maintain regular communication with tutors in order to monitor their progress and promote the idea that they are still very much a part of the class.
Perhaps the most powerful factor for students with chronic illness is the fact that they do not have control over their diseases. Thus opportunities to act independently whenever possible are extremely important to their emerging sense of self. Teachers and school staff need to be positive and understanding and allow the students to have reasonable control of difficult situations as they arise. Their school experiences are intimately tied to their self-esteem and sense of well-being. The way we respond to students within a school environment and the manner in which we touch their spirits will truly influence the way they see and feel about themselves for the rest of their lives. Therefore, we must form a strong partnership to ensure a positive school experience which can last a lifetime.