Search the Community
Showing results for tags 'parenting a child with dysautonomia'.
By: Chelsea Goldstein, Dysautonomia Information Network Has your child ever felt like a bad apple because they struggled to keep up in school due to their health? We know this is the case for many children with dysautonomia, and we know that appropriate education accommodations, along with empathy from their school officials, can dramatically improve their learning experiences. It may also help to know that your child is not alone - about 25% of children in the United states from ages two to eight live with chronic illness, other physical concerns, mental health issues, and/or behavioral/learning needs (1). That's a substantial minority if you ask us, and all of these children, including children with dysautonomia, deserve environments and accommodations that make learning accessible. The law agrees. Even still, we have heard many stories from parents who have struggled to navigate the accommodation processes in their children's school districts for a number of reasons, such as administrators who misunderstand the nature of dysautonomia, minimal resources, and resistance among staff. This article will provide some tips to help make that process as smooth as possible. Learning Challenges Dysautonomia and traditional education systems don't always mesh. Here are some of the challenges your child may face, and accommodations that may help: Challenge: Absenteeism Your child may miss class for doctor's appointments and symptom flares, and the unpredictability of dysautonomia makes it difficult to prepare for absences. When students miss class, they not only risk falling behind on course content, but they also lose time with peers to build social and emotional bonds at school. These challenges can certainly exacerbate anxiety (2). Accommodations: Absenteeism A pass to leave class when your child feels unwell and a designated rest space, such as a nurse's or guidance counselor's office, could help minimize full-day absences (3). Incorporating some level of direct care at school, such as the nurse administering your child's medications, can also minimize absences (6). Flexible attendance accommodations and the ability to get assignments remotely, when needed, may keep your child on track (4). You could also try talking with your child's teacher, directly, to determine the best way to communicate missed work, or even try a buddy system where another student brings your child assignments, explains what they missed, and provides some social connection. Challenge: Poor Motivation A child with a debilitating health condition probably views life very differently than their peers. Understandably, they may not be as forward-thinking as other people their age, or they may prioritize things that bring them joy over schoolwork when they feel okay (2). Accommodations: Poor Motivation A peer tutor program could help your child look forward to doing schoolwork as they connect with another student. Similarly, you could ask the teacher to sit your child near a "role model" so that they, ideally, bond with a motivated student (5). Give your child some "skin in the game." Talk with them to help them figure out what their motivation for learning might be. Once you figure it out, return to their "why" when they feel unmotivated (5). Work with your child's teacher to get creative on assignments. Are there ways to incorporate topics of interest, characters, or other favorite themes into projects (5)? As we will mention multiple times throughout this article, strong communication with your child's teacher is critical. Consider sharing some of DINET's information guides with them, and arrange a meeting for you and your child to explain life with dysautonomia. This meeting can facilitate understanding, give the teacher an opportunity to ask questions, and provide a chance to problem solve together. Challenge: Poor Concentration Brain fog, exhaustion, medication side effects, health-related anxiety, financial difficulties, family strain due to illness, and feeling lost in school, are but a few culprits responsible for poor concentration when your child has chronic illness (2). Accommodations: Poor Concentration Extended test times provide opportunity for frequent breaks to manage symptoms and refocus (3). Note taking aids, such as recording devices, modified teacher prompts, or pull outs from class for more individualized instruction can help reinforce materials and skills. Food can both aid concentration and distract from learning. Frequent, small meals and constant hydration are helpful for many of us. Growing up, however, I was never allowed to have food or drinks in my classrooms, and I remember my mornings being filled with dizziness and blurred vision until I could eat lunch. You should communicate with your child's teacher about food/drink policies, and work together on accommodations, as needed. Alternatively, if your child eats at school and has food allergies/sensitivities, does the school adequately communicate potential allergens and provide alternative options for your child, as needed (6)? Accidently consuming harmful foods, or not having adequate options at school could cause serious health consequences and, obviously, poor concentration. Challenge: Bullying Unfortunately, students with chronic illness can be victims of bullying. A recent report demonstrates that about two-thirds of students with chronic illness felt bullied when peers ignored them, questioned them excessively, or made verbally abusive comments. One-third reported they did not experience bullying (4). Bullying is often a result of ignorance, such as when another student believes your child is contagious (2). Accommodations: Bullying Students with chronic illness may not want to draw additional attention to themselves by reporting bullying. However, their mental health is just as important as their physical health, so you should ensure your child has safe spaces to discuss any bullying experiences (6). This could include open dialogue between you and your child, and even "check-in" meetings with a teacher or counselor. Some students feel that talking about their condition with classmates mitigates bullying. Work closely with your child and their teacher to determine appropriate and safe ways to do this. Your child may even want to give an informal presentation about life with dysautonomia. They could share some of the videos on DINET's YouTube Channel with their classmates to facilitate open discussion and productive questions. These are but a few of the challenges students with dysautonomia may face. However, each student's challenges and work-arounds are different, and this list of 100 accommodations may spark more ideas about how to improve your child's learning environment. Rights to Accommodations The US has laws to protect your child's right to an accessible and appropriate learning environment. However, it can be a little tricky to decipher these laws. Let us get you started: There are three federal acts that are meant to provide students with disabilities equitable access to appropriate education without discrimination: Section 504 of the 1973 Rehabilitation Act (Section 504) was the first civil rights act to protect the rights of people with disabilities in federally funded programs, including schools. The Americans with Disabilities Act of 1990 (ADA) expanded the right to accessibility without discrimination in any areas open to the public, such as commercial businesses, telecommunications, and employment practices. The ADA defines disability as someone who has physical or mental impairments that limit day-to-day activities (3). Many people with chronic illnesses fall under this definition and should be afforded ADA protections. In addition to accessibility features like ramps and elevators, the ADA requires schools to provide resources like assistive technology and extended test time, as needed. Students' rights to participate in school-related activities, such as sports and clubs, are also protected under the ADA (3). The Individuals with Disabilities Education Act of 1975 (IDEA) is specifically targeted at schools to guarantee free appropriate public education (FAPE) in the least restrictive environment for all students with disabilities (8). How do these laws operate in the daily lives of students? They have resulted in two types of education plans called 504 Plans and Individualized Education Plans (IEPs). 504 Plans, as the name suggests, arose from Section 504. They outline accommodations to students' learning environments (e.g., where they learn or how they receive instruction), but their learning goals remain unchanged. Generally, parents, teachers, and principals collaborate to develop 504 Plans (3). Similar to the ADA, the definition of "disability" used to qualify children for 504 Plans is intentionally broad and can include invisible conditions, such as dysautonomia (9). More specifically, children with impairments that interfere with learning (e.g., difficulty concentrating or sitting for extended periods) may be eligible for 504 Plans (3,5). IEPs are another form of education plan for students with disabilities but, unlike 504 Plans, they include individualized learning goals. More extensive teams, including school district representatives, are usually involved in developing the plans (3). Children must have at least one of the specific conditions listed here to qualify for IEPs. The differences between IEPs and 504 Plans are subtle. This chart provides some clarity. Accommodation Process Next, we'll discuss the general steps of the accommodation process. Please be aware that these steps may vary depending on your state, school district, and your child's needs. You should always collaborate with local officials, use your own judgement, and you may even consult a lawyer for legal support and advice. Step 1: Express Concern If you believe your child would benefit from a 504 Plan or IEP, you should begin by writing a letter to their school principal to request an evaluation (3). This document includes clear, detailed tips for such a request, as well as sample letters. In the event the school refuses your evaluation request, they must provide adequate explanation for their decision and/or provide you with your procedural rights (9). Remember that the school district is not always right (10), and you and your child understand their needs better than anyone. This article provides several steps you can take to challenge an evaluation denial, including setting up a meeting with the school, obtaining an independent evaluation, and filing a complaint. Step 2: Evaluation Again, the evaluation process may differ depending on the school and your child's needs, and IEP evaluations tend to be a bit more in-depth than 504 evaluations. In the case of IEPs, the school may require some combination of documentation review, testing, classroom observation, and interviews (11). No specific evaluation steps are required for 504 Plans, but schools must review multiple sources of information, such as student test performance, teacher recommendations, doctor's suggestions, attendance records, and adaptive behavior. Therefore, a single source of information, such as a doctor's recommendation, is not sufficient to grant 504 accommodations (9). There are ways to challenge the results of an evaluation if the evaluating team determines your child is not in need of accommodations. This article explains several options for disputing 504 evaluation results including negotiation, a hearing, and even a lawsuit. Under IDEA, parents can request a hearing to dispute IEP evaluation results in the presence of a qualified, independent officer (3,12). Step 3: Prepare the Plan As mentioned above, the major difference between IEPs and 504 Plans is that IEPs outline specialized education goals for students, whereas 504 Plans focus only on environmental accommodations that help students work toward existing learning goals and objectives. While IEPs are required to be documented in writing, 504 Plans are not. However, most school officials do write out 504 Plans for clarity (3). Your child's plan becomes an important reference point to ensure their needs are met. Parents can take active roles in developing these plans. For example, you could request a copy of a written draft to review about two weeks before your child's planning meeting. You could also prepare your own list of proposed accommodations/goals, and share written copies of important agenda items you would like to address during the planning meeting (13). Step 4: Be an Active Team Member Getting an IEP or 504 Plan for your child is a tremendous accomplishment, it is also just the beginning of the process. Education plans can be interpreted in multiple ways, so it is important that you are an active member of your child's planning team to ensure that accommodations are enacted in your child's best interest. A special education case manager is usually a strong point of contact for IEPs (3), and some schools have a 504 coordinator. Unfortunately, plans can be executed poorly due to misunderstanding and, less often, discrimination. If communicating with your child's planning team, directly, does not solve issues, there are avenues to file formal complaints. Parents can reach out to the Director of Special Education in their area, or get in touch with the school board. If issues remain unresolved, parents can also file a written complaint with their state's Department of Education. If your child has an IEP, you should cite the components of IDEA that you feel have been violated by your child's school. You could even request corrective action, such as updating IEP goals or reimbursement for relevant education expenses (3). Many State Parent Centers share examples of complaint letters, as well as connect networks of parents who are navigating the accommodation process. Step 5: Reevaluate the Plan All IEPs and 504 Plans should be reevaluated from time to time to ensure plans grow with children as their needs inherently change. IDEA specifies that IEP plans need to be reevaluated at least every three years, while 504 Plans are only required to be reevaluated "periodically." Many schools, however, do have policies to review 504 Plans at least every three years. You can request more frequent evaluations if you feel your child's condition warrants them, and you may want to consider requesting an evaluation if your child's condition significantly changes (14). Typically, IEP and 504 reevaluations will be given once a year at most (15). Once again, these are general steps of the accommodation process intended to get you started and to connect you with more in-depth resources. The process will likely vary by state, district, and even school. State Parent Centers can provide support and resources that are more specific to your specific state's processes, and this webpage from the US Department of Education provides much more detail on the IEP process. Tips for Parents The accommodation process is often difficult for parents. Try to remain focused on securing best education possible for your child. Here's a recap of some tips to get you through the process: 1. Communicate. Are you tired of hearing us say communication is key, yet? We're going to keep saying it because, well, it is key. Dysautonomia is a poorly understood condition, and communication may be the only way to encourage understanding and empathy among your child's school officials. Communication with your child's teacher is especially important since they will be the one enacting much of their IEP or 504 Plan (2). 2. Keep Records. As mentioned above, an accommodation decision must be made using multiple sources, so the more records you have documenting your child's need for accommodations the better (2). This could include records from doctors, mental health professionals, and your child's testimony of their struggles. You may even want to keep a symptom journal that also tracks your child's school performance. What are their grades like when they're in a flare versus not in a flare? How do absences affect their grades? Such documentation could help demonstrate associations between their health and school performance. Also make sure you have written notes and records of all steps in the accommodation process to ensure it goes as smoothly and quickly as possible. 3. Get Support from Your Child's Doctor. While doctor's records, alone, aren't enough to secure an accommodation plan, they will help. A doctor's support can help officials understand the legitimacy and severity of your child's dysautonomia, and they can also provide a professional voice regarding how the condition and medication side effects may impact your child's ability to engage in school activities (2). 4. Start the Process Early. The accommodation process can take longer than you expect due to multiple steps, time needed to evaluate your child and develop a plan, and discussion among the team and parents. This can feel even longer to your child who is trying to keep up with their education in an environment not suited to their needs. (2). 5. Enlist Outside Help. This can be a daunting process for anyone, especially parents and students who have never experienced it before. You may want to connect with other parents in your area who are familiar with the process. If you do not know anyone who has a child with accommodations, there are many local advocacy organizations and online groups where you can seek advice. Again, the State Parent Centers can be another good place to find resources and support. You may even want to enlist the help of a local lawyer with experience in education if you anticipate experiencing any barriers during the process (2). Resources Article Citations Managing Chronic Conditions. (2019, May 29). Centers for Disease Control and Prevention. https://www.cdc.gov/healthyschools/chronicconditions.htm Lee, S. (n.d.). Academic Support for Students with Serious Illnesses: Learning Options, Resources, & Tips To Help Students Succeed in School. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/student-serious-illness/ McCullum, K. (n.d.). Resource Guide for Parents of Students with Disabilities: Understanding ADA, Section 504, IDEA and IEP. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/parents-students-disabilities/ Jaress, J. & Winicki, E. (2013). Our Children with Chronic Illness in School: Finding and Bridging the Gap. Georgia Department of Education. https://www.gadoe.org/Curriculum-Instruction-and-Assessment/Special-Education-Services/Documents/IDEAS 2013 Handouts 3/Our Children with Chronic Illness in Schools.pdf The 504 Plan. (n.d.) Seattle Children's Center for Children with Special Needs. https://cshcn.org/childcare-schools-community/the-504-plan/#1502821656037-0ce36015-711f Research Brief: Addressing the Needs of Students with Chronic Health Conditions - Strategies for Schools. (2017). National Center for Chronic Disease Prevention and Health Promotion. https://www.cdc.gov/healthyschools/chronic_conditions/pdfs/2017_02_15-How-Schools-Can-Students-with-CHC_Final_508.pdf Section 504 of the Rehabilitation Act of 1973. (n.d.). Disability Rights Education & Defense Fund. https://dredf.org/legal-advocacy/laws/section-504-of-the-rehabilitation-act-of-1973/#:~:text=Section 504 of the 1973,the Americans with Disabilities Act About IDEA (n.d.). US Department of Education. https://sites.ed.gov/idea/about-idea/#IDEA-History Durheim, M. (2013, September 26). A Parent's Guide to Section 504 in Public Schools. Great! Schools. https://www.greatschools.org/gk/articles/section-504-2/ Kelly, K. (n.d.) Why Your Child's School May Deny Your Evaluation Request. Understood. https://www.understood.org/en/school-learning/evaluations/evaluation-basics/why-your-childs-school-can-deny-your-evaluation-request Morin, A. (n.d.) The School Evaluation Process: What to Expect. Understood. https://www.understood.org/en/school-learning/evaluations/evaluation-basics/the-evaluation-process-what-to-expect Küpper, L. (2000, July). A Guide to the Individualized Education Program. US Department of Education. https://www2.ed.gov/parents/needs/speced/iepguide/index.html Calbos, C. (n.d.). Prepare for 504 or IEP Meetings with a Lawyer's 4 Best Tips. Impact Parents. https://impactparents.com/blog/adhd/prepare-for-504-or-iep-meetings-with-a-lawyers-4-best-tips/ Protecting Students with Disabilities (2020, January 10). US Department of Education Office for Civil Rights. https://www2.ed.gov/about/offices/list/ocr/504faq.html Jones, L. (n.d.). Does My Child's 504 Plan Have to be Reviewed at the Start of Each School Year? Understood. https://www.understood.org/en/school-learning/special-services/504-plan/does-my-childs-504-plan-have-to-be-reviewed-at-the-beginning-of-each-school-year Additional Resources DINET Information Guides. https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/information-guides-r149/ DINET YouTube Channel. https://www.youtube.com/channel/UCUZMfU6I2622J6Fv50oFaiQ DREDF Steps for Requesting an Evaluation. https://dredf.org/mail se/2011/june/DREDF_DIABETES_RequestAssess.pdf 5 Options for Resolving a 504 Plan Dispute. https://www.understood.org/en/school-learning/your-childs-rights/dispute-resolution/5-options-for-resolving-a-504-plan-dispute Parent Center Information Hub. https://www.parentcenterhub.org/find-your-center/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to email@example.com Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:996e7669-b05c-4eef-8c07-c361f4e6fe8f