I am rarely at a loss for words to write or say. Our current local surge of COVID infections has left me wading through a dim bog of uncertainty. Far too many in our communities have lost loved ones, others are still battling for their health, and many people have lost their jobs…so I feel as if much of my writing needs to acknowledge the somber depths some have been brought to in this pandemic. There are some in our communities who are already returning to their typical activities and behavioral patterns, as if we weren’t still in the midst of a pandemic- but I cannot do so. I am married to someone who works in healthcare, I see what is happening with the increase in both deaths and the percentage of positive tests coming back, and I read what experts in epidemiology are saying. Below are just a few screen shots of where our state is currently at:

So I ended up deciding that I am going to tie this week’s post a bit into last week’s. When I said that we have ways of providing what our family needs without taking Tony into any stores right now, that of course leaves us with me making most of our purchases on-line. That in and of itself can be a bit of an adventure right now, and sometimes feels almost like a full-time job locating in-stock supplies from credible vendors, dealing with wrong items sent, or items that become damaged in shipping, etc.

Saying all of that could make it seem like this was an easy transition for me to make. Truthfully, it may be that nothing I say could help you realize the extent of my emotion when I realized that we would need to pull out of many months of public therapy. I have stated before that we have been engaged in a race against time trying to help Tony gain certain safety skills and tolerance for public places before he got too big to safely work with in public.

Putting public therapy on hold means that we may absolutely loose that race. That is never a decision I would make lightly or on a whim. The pain I feel for the opportunities this could cost him is not as raw as it was a couple of months ago, but I try not to dwell on it long. Some families have already lost far more than that, and focusing too much on my personal feelings inflames my sadness and stokes my fears. So I must keep focusing on the here and now- what we can still do. Safety in every arena for everyone involved must always come first.

Some of the skills we are working on in stores or clinics can be practiced to a lesser extent in community safety walks, but the heat of summer scorches away many of our opportunities to safely do that for now. And as we focus on moving forward with therapy goals I had put on hold to emphasize public safety, our little man continues to grow bigger.

I know some who read this may not agree that pulling public therapy outings for Tony right now is necessary. He does have conditions for which some businesses might exempt him from wearing masks. They don’t have to given that we are experiencing a pandemic. But, one of the main points in wearing non-respirator masks is to protect others from our germs should we be unaware that we have become infected. I respect that if our little man were to enter anywhere unmasked, some in our community might feel frightened or concerned about potential risk to them.

And unfortunately, some in our community might express that concern in ways that would be traumatizing to our sweet son, who wouldn’t really understand why they were reacting that way. While Andy was doing our grocery shopping this past weekend, he witnessed a customer engaging in behavior with other customers not wearing masks that was rude enough to require management intervention. I don’t want to expose our son to that.

Also, Tony tends to try and lick things he shouldn’t (like shopping cart handles). While we have been working on that for a while, it’s not a behavior that is near to being extinguished yet. People may have given us some interesting looks before, but I feel pretty confident many people would not find any sort of tolerance within themselves for that behavior under pandemic conditions- regardless of how much cleaning up after him I did. And, I have risk factors for more serious illness with COVID. If he licked something and became infected…well, that is something we feel is very important to avoid for him and for me.

I believe putting a pause on public therapy right now is more important for the long-term health and safety of everyone involved. I cannot begin to forecast all of the ways loosing opportunities to practice safety in medical and other public settings will impact Tony. I know my son well enough to know we could be facing set backs in those areas for years to come because of this. If he grows too much bigger by the time there is a treatment or a solid downward trend in cases, our son may need to reach a more distant point in the future where he can see a direct benefit to himself before we’re able to move him forward again in these areas. Our son has Sotos Syndrome, so that means faster than normal growth rates are part of what we have experienced and we have absolutely no control over how much he will be growing over the next several months.

But he will be alive, and hopefully because we are doing this others will remain that way too. Helping protect Tony and those around us from this virus at this time is, in my opinion, more important than certain personal liberties or opportunities for skill acquisition. But I am also still his mother. I know the possible price tag on this decision for his future, and it could be far more expensive in some ways than paying shipping fees on some of our purchases. And yet, I believe it was the right decision to make.

And having said that, I will tenderly wrap my hands around the rest of those feelings for now and hold them close. I wish each of you health and safety. <3 Ariana