This is a post where I feel almost as if a leaf-blower is swooshing through the folds of my brain, whisking away words like decaying leaves and leaving me uncertain how to best proceed. Originally, I planned for a different topic. However, I do think local events of the past week need to be addressed. I think the amount of public energy being spent overall on chronicling or speculating about future happenings with the current COVID 19 pandemic is fueling an unproductive sense of panic and hoarding within our local communities. And these very behaviors are ultimately going to end up hurting the exact same vulnerable groups within our community that “social distancing” and isolation measures are designed to protect.

Individuals with immune compromised conditions (such as those receiving radiation therapy or with auto-immune disorders) who have a greater need for cleaning supplies at this time are unable to find them. Individuals experiencing homelessness are being denied access to facilities they depend on, and food banks are unable to purchase food even with monetary donations because shelves are barren. Elderly individuals may have to go from store to store to store, exposing them to many more points of public contact with potentially contagious individuals, before they find what they need if they do at all. I know I will touch on other ways this can impact the developmentally disabled a bit below, but for the sake of everyone mentioned above I hope our communities can take a deep breath and return to purchasing only what each family directly needs for the short-term.

I have chosen to discuss some of what is going on because I feel like very few of the stories I have read have mentioned the impact COVID 19 measures will have on the developmentally disabled community here within the US. And I’m not just talking about it having pushed media coverage or possible remediation of the AAC (speech) device policy concerns off public health agendas. But imagine briefly though, if you will, how horrible it would feel being unable to communicate to those around you during these times of fear, and having that ability further delayed by all of this. Because it almost certainly will be. But there will certainly be other challenges within this community that will dramatically alter care, outcomes, and even possibly whether or not a therapist has a job to go to for a while.

So I will share a few things that are going on in the special needs community as I am witnessing them, and then I’m going to leave this topic for several weeks worth of posting at the very least to focus on other topics. Because Tony is sick again (his third time in the past two months), I may also need to postpone my comprehensive speech therapy update post to allow for sufficient therapy sessions for pictorial documentation.

I will start with the stores then, since we have already gone there. A week ago, I asked Andy if he could pick up some more of Tony’s oranges on the way home. Our little man cannot swallow pills, so we give him any medications that only come in tablet form by wedging the pills in orange slices. Right now, he has three tablet doses per day. This is the picture Andy sent me of our local produce section:

Sometimes, individuals with developmental disabilities have specialized dietary needs, and the hoarding and panic has drained shelves of items other than personal cleaning supplies that may be needed. We were also having to ration gluten-free bread early in the week for Tony because none could be found in any of the stores we visited. I luckily had also ordered some of our basic household needs on-line at that start of his second illness a couple of weeks ago before our on-line vendors ran out because I wasn’t sure how long it would take for him to recover.

Fortunately, we have been able to find oranges since the above picture was taken and I was able to find some less popular on-line vendors that carried some of his gluten-free snack bars. However, because all of the panic-driven crowds, lines, and empty shelves freak Tony out, we don’t have the flexibility to go store-to-store once he recovers from his current illness. After our first two attempts to pull him through his most preferred stores under these conditions before he became sick on Wednesday, we realized we could not continue to take him into public spaces until this type of shopping behavior calms down. Without the help of Casandra and Emily, we never would have been able to successfully complete those outings.

Some families within the developmentally disabled communities have already lost their habilitation or ABA therapists. When the schools closed their doors, some therapists were unable to find child support and are having to stay home with their kiddos. Therapists get paid only if they provide services.

Many organizations have enacted strict protocols for when therapists can go into a home, and we have heard warnings from some therapists that DDD and/or their own specific organizations are considering pulling therapists from the homes altogether for a period of time. For individuals with Autism in particular, they really do best when schedules, routines, and therapists are kept stable. Some companies want to go to Telehealth, but that won’t work well at all for some individuals, including our son.

Some organizations do not want therapists to go into a home of anyone who could have been exposed to COVID in an effort to reduce spread. What this means, potentially, is that any family working in certain areas of healthcare (including ours) may loose access to therapists for months- even if nobody in their home becomes infected. Some providers already don’t want to see a patient if any member of the family has had a runny nose even. Y’all, I get seasonal allergies between February and May that are somewhat brutal, with the local Olive trees seemingly trying to kill me by the time April hits. A runny nose and an occasional cough is a given for me without COVID during these months, and for some providers that means we may not be receiving services from them as they seek to ensure safety for their other clients.

I want to be clear I am not judging, I want everyone to have what they feel like they need to be safe. But emotionally, as a mom whose kid is going to be dramatically impacted by all of this, I am reeling from the emotions caused by contemplating what the fallout from all of this will do to Tony. I have already been doing physical therapy exercises with him myself for months now because that therapy position remains unfilled, but I wonder how much it will setback his long term progress to loose access to all of those other supports and specialists as well.

Currently, epidemiologists are saying that we can expect waves of infection and outbreak for the next 18 months until a safe vaccine is available. What I have been seeing is a general consensus that unless we all “shelter in-home” until that vaccine is available, which I don’t see as being sustainable, we won’t really be able to contain the spread of this virus. What is currently being asked by our public officials is meant to slow the spread down to keep health care facilities from being overwhelmed by a bunch of cases occurring at the same time. These measures are also being done in an attempt to protect the lives of our society’s most vulnerable individuals- for most individuals, this probably isn’t going to feel different from many other respiratory infections.

I think there is a lot of fear right now, and fear makes a lot of the best parts of society fall apart. And some of society’s most vulnerable individuals usually get hit the hardest by these types of events. In our house, we mourn for the families who will loose loved ones. We mourn for those who have already lost their jobs. We mourn for those who are going to loose their jobs. We mourn for those who will face discrimination because of the prevailing atmosphere of fear. And we mourn for those who may loose access to therapy services and supports as we wake up every day to this ever changing new norm.