Navigating This Pandemic ‘New Normal’ When Your Child Has a Rare Disease

The other night I participated in a (virtual) meeting where I realized that my daughter is considered a “low-incidence student.” It is funny because I so easily forget that my experiences navigating life while raising my daughter with the rare disease DDX3X syndrome aren’t so typical.

When my husband and I were preparing for a move closer to his work about four years ago, our specific choice of location was totally based on the needs of our daughter. She had no diagnosis at the time, but many challenges that required therapy and medical visits. I researched therapy clinics, schools, and physicians in the area. I checked routes to her specialists in Chicago to ensure we were making the most practical decision based on what our life revolved around — getting her the services, care and education she needed.

Yesterday I quickly counted how many adults work with my daughter on an average week. Off the top of my head, I counted 17. Many weeks there are probably even more. Each one of these people is a critical part of her life, filling essential roles with their unique expertise.

When our lives were upended by the coronavirus pandemic, I, along with many other parents of children with disabilities panicked. What will this look like when up until now, our lives have revolved around the community of support we’ve built for our daughter?

How will I take on the role of all the experts who work with her? How will she adjust to a routine change? How will I even get her to focus on anything I try to teach her? Not to mention how will I care for my other child, clean the house, do my own homework while doing all this? This is not a trivial concern because one of the biggest fears of many parents of children with disabilities is this terrible R-word: Regression. Our children fight so hard to make gains that are not guaranteed, and the thought of going backward is scary.

These sentiments were echoed in the school-centered meeting I participated in the other night. A parent expressed concerns regarding how students with complex needs are being served during this shift to e-learning.  An administrator replied to the group by listing all of the arrangements, protocols, services, and plans that have been made on behalf of the “low-incidence students” in the district. I actually picked up my phone and Googled this term because I wanted to be sure of what he meant. Turns out, they were talking about my child.

It’s times like this when it hits me in the face that our experiences are an exception, not the standard. But here is my opinion on how our school district has been serving my child, a low-incidence student. It is not actually a complicated, multi-step or intricate plan. It is quite simple. Are you ready for this? They are meeting her where she is at.

So simple, yet so meaningful and honestly, I have to say that by personally adopting this mantra I am finding that I am managing this enormous change in our lives way more smoothly. I am thankful for all of the thoughtful planning that has been done by the district, teachers and service providers these past few weeks. It is important and it is needed. However, no intricate plan will suffice if my child is having a sensory meltdown on the kitchen floor while her teacher is doing a math lesson with all the extra services “intact” through the computer. This is why I am so thankful that they are meeting her exactly where she is at. We are all learning together and trying to help her be the best learner she can be while doing it from home. It is a work in progress, but shifting expectations has taken a lot of the pressure away.

I wake up every morning and try to meet each person in my house where they are at. We are in uncharted territory and I cannot assume that someone is handling it in the same manner or at the same time as me. Even more so, I have to try and be patient with my children who are unable to verbalize how this change is impacting them.

So whether it is on the kitchen floor, in her play tent, or not face-to-face at all that day, her teachers and therapists are meeting her where she’s at. And I am meeting myself where I am at. It is not even reasonable to think I am going to fill every shoe, but I will do my best to do what I can.

And although many of our experiences may not be standard, we still have plenty of totally typical moments, too.  For instance, about 30 minutes into the second day of e-learning while sitting at our dining room table, my daughter looked up at me and earnestly said, “Time go home yet, mom?”

Stay home, stay safe, and don’t forget to stay laughing!