I bought myself a new face covering:

Having severe asthma, anxiety and claustrophobia, it’s not easy for me to wear normal masks for too long before my fight-or-flight is triggered.

Can you relate?

Even as an adult, it’s still hard for me to self-regulate when I’m triggered. My ability to self-regulate has come to the forefront of my conscious mind ever since Apollo was little; and it’s something that I continuously work on. After all, how can I encourage my children to self-regulate when I myself struggle with it on a near daily basis.

The Struggle is Very Real…

Since his birth, Apollo has displayed sensitivities to anything on or near his face. When I say that it has taken us nearly 5 years (or since his birth) for him to “sometimes” tolerate the wiping off his face during baths or after meals – that is without exaggeration. If I’m being brutally honest, it’s still a near daily struggle.

I’ve tried many different washcloth textures. Tried encouraging him to wipe his own face. Tried SO many different strategies to no avail. He hates having his face wiped so much that he tries his BEST not to get anything on his face, to avoid having to clean it.

Why This Matters

Apollo put this face covering on, and by chance I was able to capture a picture. Said face covering lasted a total of 30 seconds (if I’m being generous) before he took it off, threw it on the ground in disgust, and exclaimed “I no like that. Yuck!”

Many lives have changed since COVID-19, and not for the positive – our family included. While I understand and respect that people are scared of COVID-19, and are demanding for anyone and everyone to wear masks at all times outside their home, I can’t help but ask what we parents are expected to do when a child has a legitimate medical condition that makes mask wearing a traumatic event?

Our Governor, here in Colorado FINALLY specified that children under 10 years of age and those with disability or medical conditions that prevent the individual from wearing a mask are exempt – but it is my understanding that businesses can still require everyone to wear masks to enter into their establishments.

Calling for Isolation

Prior to COVID-19, we already did our best to avoid taking Apollo and Athena to stores, for multiple reasons, mostly surrounding the change in environment, and the possibility of causing a sensory overload. But now, when we have to take our children to the store (mostly to pick up their specialty order medications that are only carried at one pharmacy near us that doesn’t have a drive through option), we have to worry about those mask wearers that can’t help but project their disapproval and disgust onto others. They might not know that an individual has a disability or an exemption to masks or they don’t care – all they want is compliance.

I get it, but it doesn’t make said situations easy for me as a parent of two children with special needs to deal with when I’m simply trying to pickup my child’s medication.

I’ve been called lazy, a bad parent, an individual that cares about nothing about the health or safety of others, a Trump lover, etc. I’ve also been encouraged to isolate my children and never let them out of the house again until COVID-19 “goes away” – all in front of my two children. The problem is, I don’t believe that this virus will entirely go away… but that’s a topic for another day.

Our “New” Normal

Anyone else cringe when you hear the words “our NEW normal”. I have found it very difficult to imagine face masks being a new mandated accessory for the foreseeable future.

What will this “NEW” normal look like moving forward?

Every time I ask this question, I find myself in an uncomfortably long moment of silence, followed by “we really don’t know KayLa”.

We really don’t know…

For someone that has spent the better part of 5 years prompting Apollo for what will happen next — this unprecedented time has made my anxiety soar to an all time high. I find myself asking so many questions like,

How can I prepare my son for what happens next when nobody can give me a clear cut answer? When there are no clear cut answers?

I can’t.

Mandatory Masks?

Up until this past week, our school district wasn’t sure if children could be exempt from a mask – even with a letter from a psychiatrist, pediatrician and therapist specifying the reasons why wearing a mask could hinder a child’s ability to learn. Additionally, we aren’t too sure if classes will even be taught in-person come this fall. Right now, there is a plan to resume in-person learning, but how realistic is that if a child has a runny nose or any sickness and has to quarantine for 10 school days? There might be days or weeks where the school doesn’t have enough students in attendance to be open.

Anyone else have kids that are sick a lot during the winter? In my experience, kids get sick a lot when they are younger, because they are still building up their immune systems.

Right now, there isn’t a mandatory mask ruling for Apollo and Athena’s age group, but there is mandatory mask wearing for older age groups. We also know that these rules can change at any given time. I’m a bit worried about this potential change, because I believe that if forced to wear a mask, Apollo will not only be in a fight-or-flight mode the entire time, but he will likely regress significantly. I do not believe that any person in a fight-or-flight mode can learn, grow and achieve their potential – but correct me if I’m wrong.

I fail to see how this is fair to him, or individuals like him.

What upsets me about this whole mask wearing requirement is individuals can choose not to vaccinate their children, but kids might not be able to attend public school without a mask on – even with a legitimate medical reason.

Speaking Up

When I expressed my concerns to school officials, I was encouraged to force masks on Apollo, make a “reward chart” for his mask wearing and essentially torture him until he reaches their desired state of compliance. I say “torture”, because anyone that has experienced or witnessed sensory overload, knows that forcing sensory overload on someone until they comply is nothing short of TORTURE. It would be like forcing a person deathly afraid of snakes to lay in a snake pit until they got used to it.

I REFUSE to put my son through that.

When I expressed that forcing a mask on him would not happen, and explained how I’ve tried to encourage mask wearing, used every possible strategy I’ve learned from our healthcare team and tools I’ve developed through parenting classes to no avail – I was met with, “Apollo not wearing a mask might make other parents feel uncomfortable”.

So basically, Apollo’s educational support and his “fate” in the public school system is coming down to whether or not other “people” might be uncomfortable. Really?

In the next breath I found myself listening to a speech about homeschooling. I believe that I was being encouraged to homeschool Apollo through the school’s personal online module. I found myself being encouraged to avoid the Colorado K12 module, and use local module — so that the local school district would still get funding for my child as if he was present in a classroom, but would actually be at home.

So basically, I was encouraged to consider the local school module, so that the school would still get the same funding (as if Apollo was in the classroom), but I would be isolating him at home, without supports, and do all the educating myself — so that other “people” wouldn’t be uncomfortable by him or his medical restrictions.

I found myself wondering…

Wouldn’t that be cost effective and convenient for the district if ALL children with special needs were pushed into online homeschooling? Think about how much money it costs to have in-classroom supports for every child on an IEP, every child with special needs, and then think about how much money they would save if they didn’t have to provide those supports, but still got the same funding as if they did.

I was livid, and still am livid. I found myself in a state of disblief that the discussion was even taking place…

My son falling on the spectrum already makes “people” feel uncomfortable in our small community. This was talked about, in length, in a previous post Autism is not an excuse.

Where do we draw the line?

At what point does a child with special needs (or adults for that matter) deserve the same opportunities that their neurotypical counterparts do? Where are the reasonable accommodations for these people?

So many questions and concerns have weighed heavy on my mind for some time. I hate to say this, but from what I’ve seen, heard and experienced, I believe as though this virus has forced our society into its own flight-or-flight mode — lead by fear. Fear that now dictates what is now acceptable and unacceptable — even if what’s unacceptable is to the the detriment of others.

While I’m frustrated and saddened by this road block, it’s just another road block in our journey. A roadblock that I must power through to advocate for my son and for my children.

Do you have a child or children with special needs? How do they handle wearing masks? I’m open to any tips and tricks!

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