Dear COVID: From a Special Needs Mom

“Your child won’t die from being home,” began the response that triggered this post. It wasn’t a response to anything I said or did. Still, a tightness grew in my chest as I realized this person had no idea what many parents and caregivers are going through at this very moment. This “letter” is for all the people who are wondering why others are fighting for their children to receive in-person education to stop continued regression even though I still have no idea what we are going to do when the time comes.

I can respect whatever choice others are making because of my context; this is my perspective.

Dear Parent who thinks they can judge me or any other parent,

My child is not like yours. I know, no two children are the same, not even twins. They are all snowflakes, beautiful, unique, and never duplicated. I know that COVID-19 can mean life or death, and I know that the safest thing I, and you, can do is to keep our children home. But I already did that. I took my children out of school, and I kept them home. I kept them safe by keeping them away from their friends, family, and I pretend that one day soon they will see their friends again, even though I know that wasn’t likely the case for some time.

My daughter has flourished, always excelling in school. She might be the perfect age to be home since she still loves to be around us, and is happy to be able to play, read, create art, and enjoy all the things she has all day. But she misses school, and she misses her teachers, along with the chance to play with friends. She is wise beyond her years and understands that to be safe, she needs to stay home, so she rarely complains.

My son, since sheltering in place began, has made fantastic progress in one way. He naps again. That nap helps him with his energy and happiness. What he has lost is way more. He has lost valuable months of therapy. At this point, it is over 200 hours of direct services. He has missed doctors’ appointments with specialists, setting him back months. He has missed opportunities I will never know about because we are on a ticking schedule. He is delighted to be with us and he doesn’t know what is happening outside our home.

When my son was just two and a half, we met with a neurologist who tried to explain to us the seriousness of our son and his diagnosis. She was an expert, and we knew a lot of the literature before walking in the door. I asked the same question as many parents before me and many after, “will he be able to communicate; what are the chances?” She replied it’s unknown, he is still so young, but the reality is, if he wasn’t, “communicating in sentences by the time he is seven, he probably never will.” At that age, he didn’t speak a word. Today, a year and a half later, he still does not. Time is against us.

The conversation of, should we send our children to school during this pandemic, is overwhelming. My son’s issues are more than just his ability to speak. He has limitations with self-feeding, toileting, sitting still, responding to his name, walking, standing, drinking water unassisted, communicating in fundamental ways, the list goes on. The concerns were previously about the population as a whole and the taxing nature it would take on our hospitals and economy. As time has dragged, many of us are starting to wonder, at what expense for our children? I did everything, asked of me and more.

We didn’t leave our house, didn’t let anyone in, barely went to the store for basic needs. We use masks, gloves, and shelter in place for months and months. We didn’t complain. We watched as our son’s ability to walk changed from a flat foot to toes all the time. Our house rule of no screen time for our son altered to allow him access to Zoom for his classes and teachers, even though we knew the effects were not favorable and his attention limited. We canceled doctor appointments that weren’t “urgent,” but, his quality of life suffers, as does ours.

While other countries band together as a people, ours divided and did not do what was needed to end this pandemic, possibly. Instead, we fueled the fire.

When I had to tell my daughter, she wasn’t going back to school for the fall, and I had no idea when she would be, she was rightfully upset. I tried to explain in a way that made sense to a newly 7-year-old, “did you ever have one kid being noisy in the class, and the teacher would say you all had to wait until everyone was quiet?” She shook her head in agreement, telling me the details of that happening. I continued, “that is where we are right now. Most of us are wearing masks, washing our hands, being careful, but not everyone was or is, and until they are, we all have to stay home.” She understood what I meant and replied, “why doesn’t everyone just wear a mask, wash their hands and stay home like us?” All I could respond was, “I don’t know.”

The idea of sending my son to school terrifies me. I do not want him to bring this home. What if my husband and I get so ill that we can’t take care of our children, or worse, one or both of us were to die? As much as my husband makes my life so difficult at times, I don’t want to imagine doing this without him, and I hope he feels the same way for me. But when I think about how this might be “temporary,” and if this lasts three years as the Spanish Flu did in 1918, my son will be seven, and what will happen to him? Will we have missed the most significant opportunity he had to form communication? To create bonds with other people. To possibly get to a place where one day, he will be able to assist himself more because he doesn’t have the proper foundation he needed by that golden age of seven? Are we missing the opportunity for him to reach his full potential?

So, when I read a person on social media commenting on how selfish someone is to consider putting people at risk by sending their child to school, it makes me sad, frustrated, angry, and sick to my stomach. I don’t think most parents of special needs children, who are continuously fighting to help our children have the best quality of life in a way that no one could imagine until they live it, would ever take this choice lightly. This person isn’t asking to go to the arcade, an amusement park, or have a pool party with 50 guests. They want their child to access therapeutic services to assist with some of the most basic life skills.

How patient are we supposed to be?

How much is my child allowed to regress in the necessary skills others take for granted?

What sacrifices are enough?

My son is in a class with four other students. He has a 1:1 aide, and the entire class shares a teacher and two other aides. His IEP (Individualized Education Plan) allows him to see a physical, occupational, and speech therapist throughout his “typical” week. He also has contact with a bus driver to take him to and from school with one other child, and his dedicated aide is on that bus. That means he could come into contact with four other students and eight adults if those are the only people he sees. But I am not going to tell all those people they need to put their life at risk for my child, I just can’t, at the detriment to my son.

Most models on how to return to school have vulnerable populations, such as those who need the most 1:1 assistance going back the soonest. Unless, the rule is they have to wear a mask. It feels to me, people are saying, we should stay home because our children aren’t worth the sacrifice, or they say, send their children first because if it doesn’t work out, I wouldn’t want them to risk mine.

Sincerely,
A Mom

Photo by Guillermo Gallego from FreeImages