Almost three years ago, my family made a major change in our blind child’s schooling. I prepared to leave full-time employment, and we prepared to switch from a brick-and-mortar school to an online charter school—with an IEP (individualized education program) for a blind, dyslexic student with speech and other needs.
In the past few weeks, millions, perhaps tens of millions, of families have been forced into the position I chose. Additionally, more than 100,000 schools have been forced to move instruction from brick-and-mortar buildings to online environments.
I remember how challenging and overwhelming this move was for my family—and we chose it. I remember how Anna’s new school struggled for several months to provide free appropriate public education for her—and this school had been providing exclusively-online instruction for more than a dozen years.
My heart aches for children, parents, and educators forced into this brave new world. My family’s experience, though stressful, was positive in many ways. I fear that the current conditions and the natural stress caused by any change—especially an unwanted change resulting from a pandemic—is simply too overwhelming for children, families, and educators to find any benefits in the short-term.
My Mistakes (at least the big ones)
Did I make mistakes? Oh my, yes, I did! So many, many mistakes, and I had chosen the path I was on. Here is a short list of my early mistakes:
Feeling like a failure when there wasn’t a great learning experience within the first month or so of the change from brick-and-mortar to online instruction.
Change is hard. As parents, we must allow ourselves time to adjust. If we push ourselves too hard, we will burn out—and getting to the good place will take even longer. When parents are stressed, children pick up on that stress. They often blame themselves for the stress, too, “If it weren’t for me, Mom/Dad would be happy.” These feelings of responsibility for parents’ stress, combined with their own stress, can create or exacerbate anxiety, depression, and other conditions that make success in schoolwork even harder to achieve.
Expecting the online school to meet my child’s learning needs within the first month or so of school.
Before school started, the online school provided my child some of the technology needed. This proactive response led me to believe everything would be smooth sailing. My unrealistic expectations increased stress on all involved.
While my child’s educators had experience with online instruction, they had zero experience with accessibility for blind students. Curricular materials were inaccessible, and the school didn’t know how to make them accessible. Instruction continued for everyone, and my child was expected to complete all assignments, but my child was the only one in the class without access to the needed curricular materials.
Fear of irreparable damage
I was so frustrated that my child was getting behind despite spending plenty of time working on academics. I was particularly concerned about Advanced Placement Calculus—where everyone in the country takes a credit-determining exam on the same day in May. Week after week of inaccessibility meant that my child was losing weeks of preparation for that exam in comparison to non-disabled peers (who had perfectly accessible curriculum from day one).
I was so worried that Calculus simply wouldn’t happen because of inaccessibility. Calculus was a pre-requisite for other classes my child needed, and I feared that nothing could fix damage from the delays. My anxiety grew every day, and my child definitely picked up on it.
Letting the perfect get in the way of the good.
As my frustration grew, so did my demands on the school. My list of complaints grew by the day. I thought I was prioritizing my concerns, but I believe that school officials just heard a blob of complaints and demands that everything be fixed now. For a time, I believe they started to tune me out; after all, they didn’t know what to do.
In retrospect, I believe that a more nuanced approach would have been more successful. While every single concern I had was valid, school officials felt that they couldn’t do anything right. Over time, things improved, and more and more curricular materials became available, and the school began to provide my child’s IEP services (including accessible technology instruction, Braille support, speech therapy, and reading instruction). Looking back two and one-half years later, the delay seems a lot less important than it did at the time.
Failing to focus on my family
In order to provide the accessibility that was lacking, I worked fifty to sixty hours per week just to make my child’s materials accessible. I became very frustrated that I had quit working full-time for a salary only to move to working full-time for no salary. The “extra” time I would have with my child evaporated.
I blamed the school; the school was partially to blame, but so was I. In my zeal to make “everything right” with my child’s academics, I neglected everything else. We had planned to go to museums; there was no time for that. We had season passes to Hershey Park, but we only went once after school started. I chose to spend my time making her academic material accessible; it’s a choice I very much regret.
My Advice
Breathe.
Take a deep breath. Hold it. Keeping holding it. Hold it until you cannot hold it anymore. Do NOT breath out quickly. Very slowly, let that now-painful to hold breath go. Repeat.
This exercise can be calming, but it also provides guidance on how to handle extreme stress. If you breath out very quickly, you will want to breath in very quickly—to fill the void. When we are in stressful times, we get used to living with the stress. It’s easy to fear calm. After all, we tend to think that maybe we should be stressed; if we’re not stressed, we must be doing something wrong!
It can be difficult to avoid this cycle of stress, quick release, stress, repeat, but this cycle leaves no room for reflection, enjoyment, or peace. Instead, try to release the pressure slowly. When you do so, you have more control. You have time to think. You have the time to love. You have the time to live and enjoy what really can be.
Do what you can with what you have
When I taught in the public schools, I prioritized having materials and equipment with each student at all times, and my supervisors supported my efforts. Unfortunately, this is not universal. I have heard from many families that their children never had at-home access to materials and tools they needed, such as Braillers and braille paper, Braille books and worksheets and flashcards, accessible computers, or augmentative and alternative communication (AAC) tools like switches and buttons to allow non-verbal students to communicate. School closed quickly, and many of these tools remain inside locked buildings just gathering dust while students need them.
Is this frustrating? Of course it is! However, frustration does not move us forward. The fact is: many cannot access the tools and materials our children need. Given this reality, we must find ways to move forward, but on a different path.
- In some cases, we can produce our own versions of needed materials—like using copy paper folded vertically then unfolded to allow Braille learners to practice tactile tracking or by making empty egg cartons into Braille cells and using small balls to learn dot patterns.
- There are also many sources for free instruction and technology. Some are only available for a short time, and some are not available during the current shutdown, but you can find out more at the following links:
- In other cases, we might take another path entirely. Let academics fall to the side for a while. Make crafts. Make snacks. Pick some flowers (here is a video on how to pick daffodils non-visually). Not only will you be spending quality time together and making good memories, your child will be learning important skills that will last a lifetime.
All is not lost; There is always a solution
When I reflect on how stressed I was about “losing so much time” when AP Calculus and other courses were inaccessible, I could kick myself. Once I took some time to breathe and reflect, I came up with a solution (actually taking the college class instead of worrying about the AP exam), and her online school paid the bill. In other words, we worked together and stopped blaming one another.
Back then, my child was the only one at her school being left behind. Making certain that she was ready for adult adjustment to blindness training and then college was the focus. During a global pandemic, timing changes. Everyone is “behind” what we expected because we never expected this.
Please know that I am not saying that education does not matter. I firmly believe that schools must be held accountable for the services students with disabilities need. What I am saying is document the problems, but focus on your child. Encourage school officials to work toward full accessibility, but don’t allow that pursuit to take over your life.
There are solutions, and there will be time (and an infusion of federal money) to implement them. This crisis has alerted many school officials of the need to prepare for the unexpected. Hearts and minds have changed, and post-pandemic priorities will undoubtedly change as well.
Prepare for the future, but live in the now. You won’t regret it.