As a research analyst at the Center on Reinventing Public Education, I've researched school/district response to the pandemic. I've interviewed many parents who have children with disabilities over the last six months about their experiences, and most recently, I've been tracking school reopening plans.
What I have noticed, sadly, is a lack of detail on special education in reopening plans. I was hoping that I saw just a lack of publicly available detail on special education. I hoped that private conversations were happening between families and the Individualized Education Program (IEP) teams. I am thankful that Dalton's IEP team reached out to meet before the school year started, even though it wasn't time for his annual IEP meeting. I think our experience is not typical, unfortunately.
Still, this first month of school has been more challenging than I ever imagined. I'm sure many parents can relate to my feelings. I have similar feelings to those I felt in early spring, but fall is more challenging in many ways. In spring, we all thought schools would reopen in a few weeks - that this was a short term situation. When we learned that reopening was impossible, many parents focused on "just getting to the end of the year." This academic year, things seem even more uncertain. It's unclear if and how schools will reopen. Additional accountability measures have been put into place, presumably to ensure that we do not have a repeat of spring.
Dalton's IEP team met before the year started, and we developed a robust plan to start the year, based upon Dalton sharing about his experiences in the spring. On the first day of school, Dalton was excited. Spring had gone well for him, and he was expecting more of the same. I felt confident because we had the support he needed, and I also thought spring went pretty well. I thought I knew how to support him.
One the first day of school this fall, it became clear how different fall is from spring. I knew that schools were trying to improve on spring's plan - clarifying expectations for grading, attendance, engagement, and instruction. This fall started as a disaster for Dalton - it was nothing like spring. Dalton's IEP team had planned for a repeat of spring and not for this new fall reality. He was in a meltdown, and I struggled even to get him to log in to class.
Fast forward a month, and we have a new individualized plan in place that seems to be working. It has taken strong student and parent advocacy to get to this point. Since school started, we've met twice as an IEP team. I've done extensive research on my own. I've brainstormed with the special education director, principal, special education teachers, general education teachers, and related service providers (Teacher of the Visually Impaired and the Teacher of the Deaf).
I'm happy to report that this week has been good - not perfect by any means - but better. Things continue to shift and continuously change as schools adjust to meet students' needs, which is good but presents challenges. One thing that I've been thankful for is our teachers and our team. Everyone has remained flexible, and the teachers have been willing and open to trying new things that work for Dalton. I know that teachers have a lot on their plates right now, so I'm thankful for the personal time they are taking to make sure Dalton is getting the support he needs. The other day I heard his history teacher check in with him. She told him, "Dalton, today you are caught up. Your goal for this class is to take a break, step away from your computer completely." I was almost in tears hearing this caring teacher give these words of encouragement and support.
Deafblindness is a low incidence disability, and educational teams often misunderstand it. That is nothing new for us. With all the uncertainty and change this year, existing problems have been exacerbated. The flexibility and problem solving that served us well in the past is vital today.
Here's a summary of the challenges Dalton has been experiencing and our proposed solutions. I'm sharing these in case it helps others that are having similar difficulties.
Problem: Recreating the school day with synchronous (live) instruction for the full school day led to extreme listening and visual fatigue, stress, and meltdowns.
1. Reduce the required amount of synchronous (live) instruction. Dalton's teachers now record each lesson so he and I can view them independently. The teachers are adding more asynchronous options in the future, so Dalton can choose which option works for him each day.
2. Instead of Dalton going into breakout rooms with peers right after the lecture, he can hang up to work independently and take listening/visual breaks.
3. He is self-pacing in math this year, allowing him some additional time "off-screen".
4. Dalton does not need to have his camera on during class.
Problem: Parts of the online lessons were not accessible.
1. We are working on getting captioning in place.
2. The vision specialist and I receive copies of the tests and assignments in advance to ensure that everything is clear and accessible. For example, the graphs in math lessons are blurry, and math instruction is hard to see on the virtual whiteboard.
3. Teachers are wearing microphones - the school purchased them for all his teachers, and teachers minimize visual clutter in their virtual backgrounds.
Problem: Dalton was having a hard time knowing what he needed to do each day.
1. Teachers are doing one-on-one check-ins with him and me at least once a day.
2. The online platform is updated each morning with straightforward, step by step, easy to follow instructions.
Dalton has many other remote learning-specific accommodations since we have decide that he will not be going back in person this academic year. But our biggest challenge continues to be how hard virtual instruction is for Dalton because of his deafblindness. I wish there were a better solution, but for now, he and I are trying to make the best of it, and, as things change, we'll continue to adjust and advocate.
To all the teachers out there, thank you for all you are doing. To my fellow parents, hang in there, and if I can help in any way, please reach out. To Dalton, you are amazing, and I'm so proud of your resilience and self-advocacy. You're rocking this year.
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.