As many in our community return to school or start a new academic year, it is important for students and their families to be well-prepared. This is especially crucial for those transitioning into elementary school, middle or junior high, high school, or college. To support a smooth and successful school year for individuals with APS Type 1, we recommend reviewing two valuable presentations from our past symposia.
In this insightful presentation from the Second International Symposium on APS Type1 at Stony Brook, NY, in 2017, APS Type 1 parent Brian Dwyer (also an educator), a special education administrator from Long Island, and I provided guidance on navigating the U.S. school system. The 55-minute discussion covered:
- Key terminology (FAPE, RTI, LRE, IDEA, CSE, 504, IEP, and more)
- Practical examples of 504 Plans and IEPs for students with APS Type 1
- Differences between accommodations and modifications, with examples of modifications related to response, setting, timing, scheduling, and organizing
- Tips on handling C.S.E. (Committee on Special Education) meetings
We emphasized the importance of:
- Understanding the law, including knowing your rights and understanding that decisions are data-driven. For instance, advocating for full-day extended school year services should be based on legal terminology like “substantial regression,” not personal circumstances.
- Connecting medical needs to academic accommodations. For example, extended time on standardized or regular tests can be justified by linking adrenal insufficiency and hypoparathyroidism’s brain fog to the stress of timed exams.
Connect with Dave via email: mistydog23@aol.com
In this two-part presentation from the First International Symposium on APS Type 1 in Toronto, Canada, in 2015, Gaby Talarico, our newest board member, discussed transitioning from high school to college. Key topics included:
- Selecting a college
- Educating school staff
- Managing dorm life
- Connecting with the school’s disability office
- Communicating with roommates and resident advisors (RAs)
- Surrounding yourself with supportive people
- Keeping your phone charged
- Finding and connecting with nearby hospitals and doctors
- Taking care of yourself
A few years later, when our own son was preparing to go off to school, Gaby’s father, Todd, recommended finding and connecting with a local endocrinologist in the area. Following Todd’s advice, we met with the endocrinology team at the hospital closest to the school and had our son’s medical records forwarded to the hospital. Not surprisingly, our son did need to use the hospital’s emergency room at the start of his freshman year. Having already connected with the endo team and having our son’s medical records available to them greatly reduced the stress of the situation and ensured a quick, efficient, and positive outcome.
Connect with Gaby via email: gabytalarico@yahoo.com
We can all learn from each other. We all have so many experiences to share. We encourage you to reach out to each other, whether via social media, phone, email, or at our next symposium. Together, we can help ease the stress and burden of living with APS Type 1.
The APS Type 1 Foundation wishes everyone a successful and healthy school year!