Editor's note: The following is a statement to the Board of Education, intended to be read at its August 26 meeting. It was sent to the Journal for publication by the authors.
We’re here as parents of two elementary school children and we’re going to do something different tonight and tell you a story. This story couldn't possibly be real because there's no way something this tragic would happen in a town of people who have so much pride in their students, especially students with disabilities, who overcome a lot every year.
A young boy enters elementary school in fall 2020, wearing a gaiter because he is unable to tolerate wearing a surgical or cotton mask because of the sensation that the strings feel like on his ears. He states that he feels like his glasses will fall off, he won't be able to see, he feels like he is going to die and then instantly he starts to panic.
The irony in this is that no one could possibly know he is panicking because his face is completely covered and he is so afraid to take down the face covering because he fears that he will die from a pandemic if he does.
Most people, when they hear this story, will say, "Well, that's the parent’s job to teach the child to speak up for himself and ask for help." Well, in this story, this child (as many other children in this fictional town do) has a developmental disability, which can prevent him from being aware and able to speak and be his own advocate at just eight years old.
This boy goes through five months of school, tolerating the gaiter as best as he can despite the sensory challenges. The boy gets made fun of for not wearing a "regular" mask and is told he will die of Covid if he doesn't wear the same type of mask as everyone else. Many other dialogues ensue… yet still, this boy perseveres.
January rolls around and this young child stops eating, won't play, won't talk to his friends, loses interest in anything and everything, and refuses to go to school.
The parents go to every specialist possible to determine how to help their child. They are heartbroken, feel defeated because they too are feeling anxious about the world in which they are currently raising their children. One of the parents has a compromised immune system and immediately gets vaccinated. The other parent does the same.
They do what they are told to by the government because they thought this vaccine would provide an end in sight.
The school is actively involved, interventions are put into place, and the boy begins to feel hope with the help of medication and reassurance from all the adults around him that the pandemic will be over soon.
As spring fills the air, this boy begins to burst with energy, is more talkative, social and even talks about the future and all the things that he would like to do as a family, as a baseball player and a Cub Scout.
In July of 2021, the parents learn about the Mask Leniency Program that their son now qualifies for because he has medical documentation stating that he cannot tolerate a mask in school because of his anxiety.
The boy attends a program where he gets to socialize and learn about reading and math for an entire month. The boy said this was the BEST month of the entire year.
The boy read 78 books in 46 days and was feeling really good. The boy spoke often of being happy, he doesn't have to feel like he's choking anymore.
See, the first tragedy in this story is that many of the adults believed the government when they said that when a vaccine became available, life would start to go back to normal. But the biggest tragedy was what happened to this impressionable young boy who was accepted into a program based on documentation provided by his doctor.
We’re not here to preach about whether or not masks work, or whether or not we believe in vaccinating children. Everyone has their opinions and we believe when it comes to our children's bodies, WE the parents should be the ones to make those decisions, NOT the government.
We are living in a world where fear has taken over and it feels like our rights are being taken away. Most importantly, we believe in protecting our most vulnerable population, like the boy mentioned in the story. Masking children is not a one-size-fits-all approach. Some children are really not able to tolerate wearing them.
Let’s listen to the little boy in the story and realize that the challenges are different when it comes to children with anxiety and developmental disabilities. It is isolating being a parent of a child with special needs, especially during times like these is when we need each other the most.
From the authors, Paul and Nicole, after the BOE meeting: Our purpose in sharing this story is in the hopes it will help even one family who would have been eligible for mask exemption, should their doctor require it as our child's doctors did. We hope clear guidelines are created by the BOE so that children with disabilities can be protected in the same manner children without disabilities are.
It is very isolating being parents of a child with special needs, and it’s especially during times like these that we need each other the most. As parents we hope that the administration, with now three sitting BOE members who have specific experience with special education, can come to a resolution for this child in the story and any other child in this town who cannot tolerate a mask. This story was never about politics, personal beliefs, or causing any problems for school administration. This story was about advocating for what's right in this individual case and for bringing to light the reasons why we have a divided community. The lies have to stop or else we will never recover from this. People are watching and are realizing that rhetoric and language mean nothing when followed with inaction.