I am often asked what my plans are for Tony in terms of public or private schooling, especially around this time of year when school age children are typically headed off to one classroom or another. In previous years, my answer was there were important behavioral concerns we were addressing in therapy at home that were best suited to being worked on in that environment. For example, self-harming, inability to stop when asked to to so by someone other than me, and lack of directional flexibility (Tony’s ability to go a direction indicated without pushing and making every effort possible to go a different, preferred direction regardless of the reward offered for compliance) were sizable barriers to his success in a classroom. We have never been able to control his ADHD symptoms enough through medication to please a teacher (I am quite certain of that) so we are just talking about what was needed from the standpoint of safety for everybody involved

This year we are in a unique and slightly different position. Years of working at these goals has paid off in a way that would have allowed him to move into a public school classroom for part of the day until we were able to meet the 100 day requirement to file for ESA and have him moved to a private school better suited to his needs. In Arizona, special education is not funded at a level where the public school system would easily provide him the dedicated one-on-one support he actually needs to learn and grow.

When Tony was in a local public developmental preschool several years ago, his therapy team and medical team all made statements to the school that he needed a one-on-one aid. His geneticist even wrote a letter affirming those were his needs, but we were told by the school that they didn’t feel he needed it. Everyone who has ever worked with Tony knows he needs that kind of support, the school didn’t want to spend the money on that because funding resources are limited and let’s be honest, many people don’t see providing that level of support to someone like my son as benefiting society nearly as much as they believe it would to provide it to a kiddo perceived to be higher functioning. We would have had to pay for an attorney and sue, and once we spent all of that money to get a court to order his needs be met, a public school can still pull that aid to cover absences for paraprofessionals in other classes. I ended up pulling Tony out instead of lawyering up for a host of reasons we’re not getting into right now, but part of it was my intuition told me the speed at which Tony was gaining size because of Sotos was going to quickly give us challenges that would best be met at home for a while.

However, now self-harming is almost entirely extinguished. Directional flexibility in stores and other public facilities is dramatically improved, and he will sometimes respond to a directive to stop when given by another person. But home he is staying, because we are still in a pandemic, and my decision about whether or not to send him this year boiled down to vaccines and masks. Tony can’t be vaccinated right now (and his medical team will want an echo done before they will approve him for a vaccine because of the increased risk of cardiac problems that comes with Sotos).

Anyone in Arizona can tell you masks are hotly contested here and our current governor has signed a law banning mask mandates in the public school systems. Masks never should have been politicized. Never. This is a public health measure and matter. Masks are all about protecting other people in the community who could be harmed in the advent that a person is contagious and doesn’t know it yet or at all. There’s a reason surgical staff are required by hospitals to wear masks- it is to protect the patient from any possible germs from the hospital staff. I don’t hear anybody saying they want their health care providers to stop wearing masks and gloves during procedures, and rightfully so. After all, it protects the patients! If everyone is wearing masks, they are highly effective in reducing viral illnesses, and Delta is significantly more contagious than the original strain of COVID. More than 620,000 Americans have already died from COVID. More consistent mask wearing from all of us could have prevented some of those deaths.

I hear people cite freedom as a reason masks shouldn’t be required. And yet, we as a nation have long standing traditions about making laws and ordinances prohibiting things that could lead the harm of another person. I can’t go up and slap someone for saying something hurtful to Tony or I’ll face legal consequences no matter what they said that could include fines and/or jail time. We don’t allow drunk driving. We require people to get auto insurance, wear seat belts, heck, I can’t even modify the outside of my house without getting a permit from the town I live in. I see people who cheerfully pay their HOA fees each month protesting mask requirements, and with HOA’s we’re basically paying someone to limit a whole bunch of freedoms by giving us a list of things we cannot do to the outside of our property (enforceable by fines) so that everyone’s property values stay consistent. Most communities in the area I live in have mandatory HOA’s, meaning you can’t opt out of them if you want to live there and if you don’t pay the fees, they can legally come after you and take your house. Should we be caring about our property values more than the lives of the community members around us? And, if we really need to go there, most stores have rules about the amount of clothing you have to wear to be a customer entering into their building and receive services from them…I as a woman certainly can’t walk into one without a shirt and expect to avoid having the cops called. Masks are just another piece of clothing from my perspective.

Most of us who are having to live out the repercussions of the banning of masks for political reasons aren’t in the privileged position of Texas’ fully vaccinated governor, who in recently catching COVID, was able to immediately request and get a monoclonal antibody treatment not easily available to most of us. In his state, parents of children in some areas have already been told there is no hospital space left in pediatric ICUs if their kiddo gets sick enough to need that kind of help, that someone else will have to die before there will be room for their child to receive treatment. As cases rise in Arizona, without more mask wearing from everybody, we could soon be in similar circumstances.

From my perspective, when it comes to masks and sending Tony to school there are two problems. As we’ve discussed, masks have been banned in Arizona schools. Some schools are pushing back, and one group has already issued a lawsuit trying to get the law overturned. But for now, there wouldn’t be enough people wearing masks in the school to reduce Tony’s risk of infection. And, he wouldn’t be able to wear the mask long enough to do the same for others. He can wear a mask for about an hour right now, but that’s not enough for school.

Hannah is going to school wearing a mask with filtration comparable to an N95, and despite being vaccinated she originally agreed to do so to reduce the risk of bringing anything home to her brother because she loves him very much and wants to do everything she can to reduce his risks. So I felt comfortable sending her into her school vaccinated and with that kind of mask. Everyone in our house wears masks whenever we go out now to protect both ourselves and others, as new studies have indicated even vaccinated individuals can spread Delta if they catch it. And, we have learned this week that immunity provided by the vaccines begins to decrease after about six months, so more fully vaccinated people could be infected by COVID until boosters start rolling out.

But for Tony, without masks and vaccinations, public school isn’t safe enough for him to be happening…not this year.