Back to school is a time usually dreaded by students, but for parents of a child with an AVM, it can be a time of significant worry. Will my child be safe? Will the teacher be understanding of my child’s medical issues? How will we make it through this school year? It can be overwhelming.
My 15 year old son Andrew is an AVM survivor since his rupture at age 8. At the time, he was in 2nd grade. Nearly his entire schooling has been while also fighting an AVM. We have seemingly done it all…home hospital where the teacher comes to our house once a day, part time school from 2 to 4 hours per day, school with an aide, independent study, and even some combination during the same school year! It is possible to get what your child needs for them to have a successful school experience. Here are a few tips to get started:
Know your rights
Education is a civil right and every student has the right to a free and appropriate public education. Some students may need minor adjustments and strategies and some students may need significant support. Both IEPs and 504 plans are legally binding documents intended to ensure that students with disabilities have equal access to education.
Understand the lingo
504: Named after Section 504 of the Rehabilitation Act of 1973, a federal civil rights law to stop discrimination against people with disabilities. A 504 Plan is for when the student is able to function well in a regular education environment with accommodations.
IEP: Short for Individual Education Program governed by The Individuals with Disabilities Education Act (IDEA), a federal special education law for children with disabilities. An IEP is for students with a disability that is adversely impacting education and for students who need more than just accommodations to regular education. Eligibility in Special Education opens the door to a variety of related services and supports including therapy.
Medical Plan: a plan for what happens in case of an emergency at school, usually written by the district nurse with guidance from doctor and parent
In preparation for meeting with your school, have a list of your goals, your student’s challenges, and supports that they will need to be successful. I also bring a one pager, “What is an AVM?” and other articles that can be helpful in explaining our medical experience.
Ask for what you need
Here are some of the accommodations Andrew has received in his 504 plan: Wear a hat in classroom due to lighting/headaches; extended time on tests and assignments; reduced homework and classwork; adjusted class schedules; use of assistive technology like text to type; use of modified textbooks or audio books; one-on-one tutor or aide; modified PE; desk type or location; home set of textbooks; require that student is accompanied if going to office; cafeteria help; additional time for passing period; alternate setting for test taking.
Keep notes and copies of all conversations and paperwork. I started a binder just for school so I can keep all of my pre-meeting notes, school doctor notes, medical plans, 504 plans. I do not depend on the school to ensure his teachers have a copy. I email a copy along with an introduction at the beginning of each school year.
Use your support systems already in place
No one knows your child better than you, but your doctors and therapists also see your child regularly. Ask them for help in determining what support your child might need at school. Some therapists will attend the school meetings with you.
Communication is Key
I always introduce myself and Andrew in an email to the appropriate school personnel. Be sure they know your story and will recognize your child. If you have a plan in place and something isn’t working for you, speak up! When your child is old enough and able, teach them to politely and appropriately advocate for themselves as well.
Figuring out the school situation while also handling medical issues can be overwhelming and exhausting. However, the school should be your partner in figuring out how to get your child what they need to be successful. Success doesn’t look the same for everyone, so be clear in what will and won’t work for your child. Best wishes for a wonderful school year!
Click the photo to learn more about Angela Ramirez Holmes.