My brother, kissing me on the cheek when I was a baby.
So many of our communities are boiling and burning right now. For days, I have struggled to know what to say about this, but felt that I would indeed want to share some form of comment with my loved ones. While I have certainly not known what it was like to be targeted by police for the color of my skin, when my brother was killed by a police officer serving a warrant more than 18 years ago, I became part of a group I would have never imagined belonging to.
As a surviving family member of a loved one who died in those kinds of circumstances, I know many levels of pain and anger. My heart, therefore, completely and thoroughly goes out to any family walking down a similar, or an even more difficult, pathway to this kind of loss. My brother, who was a drug addict, was awoken by police forcing their way into our grandmother’s house to serve a narcotics warrant. He was asleep, stood up from his bed, the officer in question said he thought my brother had a gun and shot him three times in the chest. My brother was then handcuffed while he finished bleeding to death so that the officers could search his bedroom for a gun- and based on my remembrance of the DPS investigation into the shooting, no gun was to be found in that room of the house. No officers were fired, no charges were given, and DPS ruled it a “justifiable homicide.”
And sometimes, to this day, reports about the shooting by that county state that my brother actually had a gun and refused to put it down- which was not the case as I understand it. My grandmother also remembered seeing nothing in my brother’s hands as she was being drug out of the house during the shooting. So I have felt the anger and pain of loosing a loved one to what I consider to have been unnecessary police force- and in doing so, having experienced more cover-up than justice.
Me and my brother in my grandmother’s front yard many years ago…
My brother was not a perfectly saintly man, and I will never claim that he was. But… I did love him and the way he died was devastating and, in my opinion, completely unnecessary. What I wanted, what my grandmother wanted, was for my brother to get help and turn his life in a direction away from addiction. So many people looked at him and felt like he had earned what happened to him because of his addictions. I can never repay my grandmother’s neighbors for the different stories they shared after his death, acts of kindness he performed for them such as coming over in the middle of the night when pipes had burst and helping to clean and make repairs.
Some of you know me well enough to know that there’s a great deal more I could say about our family’s experiences during that time, but what is happening in our communities right now is not really about me or my brother.
I think it is important for each of us to recognize that minority communities in our country find this type of event to be a much more common experience. That is definitelynot OK. And yet, I think there is more than racism that needs to be addressed. I think our communities deserve to have their local police departments stop sheltering officers from legal consequences in these types of situations. Police officers should be held to the same standard of the law as other citizens.
I also think it is important to say there are some amazing police officers out there who are making sacrifices every day to protect our community, and doing so without using excessive force or discriminatory practices. I think we also need to recognize that policing is a very difficult job. We are asking these officers to constantly put themselves in situations where their lives are in danger to help keep peace and order in our communities.
My brother, me, and my grandmother a few years before his death.
I understand the desire and need for protests, but I cannot support members of any group taking advantage of those protests to destroy property or hurt others. And while I personally have some very strong feelings about how some of the reporting was done during my brother’s death, I also cannot agree with the attacks against members of the media trying to cover these protests. The media has served an important role in educating the public about abuses of power, and stifling their ability to do so will only take us down a path away from democracy. And when it comes to the reporting on my brother, the elements that impacted me most negatively were inaccuracies given to the media by the police department involved, so I don’t actually view the media as having been the source of those particular pieces of misinformation.
I think we all need to really, truly look at one another and see our shared humanity. I think we need to listen to one another, we need to speak to one another with respect, and I think some things definitely need to change so that our communities can move towards healing.
This is one of those weeks where I was initially planning on writing about an entirely different subject. I am going to move that previously planned post to a different week because I feel current events require a change in plans.
Today, Tony’s original speech device died (this is the device he’s been using since he was three, and our son recently just turned 8). This is the device we applied to have replaced one year and 14 days ago. Specifically, the screen keeps shutting off and showing a dead battery screen when plugged in- even with a full charge. The handle was already being held together by duct tape, multiple features have been malfunctioning for over a year, and a couple of years ago I had to replace the original strap clips with clamps from the local hardware store.
I am going to contact our son’s support services coordinator to find out what would be considered a proper “burial” for a device that was paid for by the Division of Developmental Disabilities, even as we face renewed uncertainty about what is currently going on with the ongoing application and order of his replacement device.
I received the above letter not too long ago, after the order was placed. The company with whom the order was placed was, as I understand it, engaged in verifying that payment would occur before the device was sent out.
I have, of course, contacted more than one person about what the review process behind this letter could mean for our son, and as of today, I remain uncertain. For those of you new to our blog, we’ve already gone through two appeals, multiple filed grievances, and multiple reviews along the way after finally having received prior authorization a couple of months ago for Tony’s new device. And now, we also have the above letter and a non-functioning speech device.
However, one thing I do feel pretty confident about.
Our initial application was filed one year and 14 days ago.
That amount of time (and the length of the wait as we continue to go through this process is still ticking onward and growing longer as I write this) was certainly not in Tony’s best interest. This is currently the only form of communication our son can successfully use to express his needs and wants. If any teacher or organization did anything to restrict the speech of a verbal child it would be considered abuse.
And I wonder… what does this situation say about how access to communication is viewed for differently-abled non-verbal Arizonans?
Tony trying out his new body sock. The old one had to be replaced last month because he outgrew it. The new one is the same brand and color, but a different size. Our little man refused to try it on for several days because it was new. All photos by Ariana for this post.
I was talking to our son’s geneticist today (who is sadly, accepting a new job elsewhere this summer- sob!!!), and we were discussing how hard changes can be for Tony. She commented that the kinds of changes we have all been experiencing in our communities can be hard for anybody.
When a kiddo has as many diagnoses with overlapping symptoms as our little man does, sometimes it can be difficult to definitively say which condition is the root cause. His love of routine and fixation on particular products could be strongly associated with either his FASD or his Autism. For those of you new to this blog, I love Tony as if he were born to me, so I only ever feel the need to mention he was adopted when discussing his FASD diagnosis. I have experienced the sharp sting of judgment that comes my way when someone thinks I was the one who did the drinking that caused this for him- and I was not. So for that reason alone I bring it up briefly here. He is my son, and being declared so by a judge has not ever mattered to my heart.
I noticed our little man’s rigidity quite early in his toddler years. When we were trying to wean him off the bottle, he refused to drink milk any other way. To this day, he still won’t drink milk because it isn’t given to him in a baby bottle. For over 7 years now it has been so.
For the parent of a kiddo with highly specific brand, style, texture, and routine expectations and preferences, the amount of upheaval we have been experiencing secondary to the pandemic can be a nightmare to navigate. Individuals with level 3 Autism can and have refused to drink if they didn’t have a specific cup or eat replacement brands if a product was discontinued. The determination displayed in these kinds of situations has ended in hospitalization for some.
In what I say, I want to pause a moment and say these are the challenges of living, and there are those who are mourning a loved one lost right now. We are very blessed to have these struggles at all because it means that we are still all here, together as a family.
When COVID cases were officially recognized in our community, within a matter of days Tony’s schedule exploded. Virtually nothing was the same, and many of his product-specific snacks could not be found because of panic shopping behaviors. Some of them still can’t be found on-line or in our local stores.
For nearly a month, our little man lost all therapy time with both Emily and Casandra. Initially, we weren’t sure what to communicate with him about when they would be back and to what extent, because one of the possible scenarios included the permanent loss of one or both of those therapists. NMTSA closed their clinic doors before the governor announced stay-at-home orders to protect their immune compromised music therapy clients, and NMT, ST, and OT were moved to telehealth. I was terrified that this much change was going to lead to a massive regression in the reduction of self-harming behaviors. I did everything I could to pull back on pushing him to do his most aversive therapy tasks myself, and braced for a self-harming storm.
A storm that never came. Oh, he definitely wasn’t happy about any of those changes, but mostly it has led to a reduction in cooperation. Sometimes he will try to push more to get to something he wants, and he will meltdown and engage in other behaviors during telehealth sessions, but with everything that has changed and transpired, we are actually experiencing only one or two incredibly brief self-harming episodes a week. That is better than I could have ever hoped for based on our past experience with even one change occurring for him.
And, a couple rare bursts of adaptability have burst through these behavioral clouds. His preferred Cheetos (Baked), have been hard to come by. So, I got a couple of replacement options. They were not identical in texture or appearance, but they were the best I could find. The displeasure was evident when he first put one in his mouth during one of our early morning community safety walks, and he refused to eat the rest of the bag for several hours. Tentatively he tried a couple more later in the day, and within a couple of hours, he was asking for bowl after bowl of them. I was floored- and grateful.
The first picture was taken shortly after Tony ate his first one of this new-to-him style of Cheetos. Really it was a triumph he even tried it. The expression really says it all- he was not happy and he did not initially like or accept the differences. The second picture was taken a few days ago, after our little man had requested a bowl of the new style.
Another success was our replacement attempt for his Van’s gluten free peanut butter and jelly bars. I found some Bob’s Better Bars with a similar flavor profile and texture, though they are a different size, packaging, and lack the jelly filling. Usually a packaging change alone (even with no other changes to the product) is enough for him to reject an item. He gave me a dubious look the first time I handed him pieces of the new bar type. He tentatively licked it, mulled it over for a few moments, popped it in his mouth…and mercifully ate the rest of the bar. Now that we have some Van’s back in the house though, he’s back to rejecting the Bob’s.
The Bob’s & the Van’s bars. They don’t look alike, and normally that would be enough to predict the Bob’s wouldn’t even be tried.
Most of the time we aren’t that lucky. I still can’t find a similar product for Enviorkidz Chocolate Crispy Rice bars that he’s willing to eat. He won’t even touch bars with a slight color variance, and hates the texture of every other brand we’ve tried. None of those ill-fated attempts even made it to his lips- they were pushed away while he gave me the stink eye.
What Dr. L said was true…changes can be hard for anybody. I personally wanted to cry when I found out she was moving on to a fabulous new career opportunity. We have been blessed to work with her, and wish her every success imaginable. But for Tony, often just one change is accompanied at the best by a temporary stall to progress- at worst, behavioral regressions. His reactions to the current flood of changes tells us the true depth of success he is having in overcoming his urge to hit his head on things when upset. For everything else that has come to us this spring, this alone has been progress far greater than I truly expected. And I remain thankful- every day. I am thankful to Tony for working so hard with us (even when this much change makes it so difficult for him), and for each therapist and doctor who has worked with our family to help him/us move forward along the way.
I hope each of you are hanging in there with whatever changes have come your way. Take good care of yourselves. <3 Ariana
Screen shot of a text I sent yesterday to a close friend. We had been talking about an upcoming makeup collection reveal for one of my favorite brands when my latest disinfectant order arrived. All photos by Ariana
My, how the world has changed. So, let’s just start with me admitting I am not one of those individuals that enjoys cleaning. Nope. Not even a little bit. Next, let’s just add that because of my own allergy and asthma related symptoms (combined with Tony’s desire to lick many surfaces best left unmouthed), I typically used to clean most everything but the toilet with a vinegar-water solution. Unless, of course, biohazards or infection are involved, and then I go with whatever is called for to minimize disease spread. Current conditions in our community necessitates disinfectant for every cleaning.
Nobody in our home has had COVID-19… that we are aware of. While my husband works in healthcare, he always uses the training, protective equipment, and standard precautions called for with any patient interaction. He has never brought anything home to us. I am honestly more worried about possible exposure on Andy’s trips into the grocery store (where symptoms of others around him are unknown) than I am about his potential exposure at work. That being said, I have risk factors that increase the possibility for more severe illness should this virus come to our house, so I aim to prevent infection and provide the safest possible work environment for therapists who have chosen to work in our home at this time.
Best practice for an environment where you are worried about picking up germs is to not wear any rings because they can prevent some germs from being washed away. Also, keep your nails short. And yes, that’s my hand with soap on it 🙂
What I am about to outline as our current process has pieces that fall under the “extreme caution” heading. They may not all be strictly required to prevent infection with this virus, but they do provide peace of mind to some. I think an important part of providing a safe work environment is to understand what measures those you are working with want to see taken to feel more comfortable. My personal opinion regardless is that when it comes to an emerging virus like COVID, often the gaps in known data as we are all making discoveries together warrants a heavier hand with infection control.
In our house, everyone is seen as a possible asymptomatic carrier. That means what is done to one is done to all. No plan that only screens out certain individuals for contact can hope to succeed with a highly contagious pathogen that comes with asymptomatic illness and spread in some individuals. And, effective infection control applies to both what happens in the home and how public encounters are handled.
I have to purchase enough hand sanitizer so that all therapists working here have access. This purchase ended up being an unexpected bright spot in my day because of the glitter in it.
Most trips into public are handled by Andy because of my risk factors, but I did have to take an unplanned trip into the dentist last week to repair an older filling that broke off. I wore in one of my own masks. I brought my own pen, making sure not to handle their papers or clipboards. I stood while waiting in the lobby. I brought hand sanitizer and something to clean their toilet seat and handle before and after I used it. I turned off the faucet with a clean paper towel so I didn’t directly touch the knobs with my newly cleaned hands. I used a clean paper towel to open the door knob and shut off the light switch and discarded this in a trash can on the way to the exam room.
When I returned home, I dumped the clothes I was wearing immediately in the laundry, showered, cleaned off necessary touched surfaces, and bleached down the shower. Towels were put in the dirty laundry and replaced out with fresh ones for my honey’s post-work shower. If hand washing is done well, cleaning off the light switches and knobs in such a case shouldn’t be necessary, but it is one of those comfort measures that becomes a symbol to everyone around you that you are doing everything you can to reduce risks.
Leaving surfaces wet with the disinfectant for the required time given on the label is important if you want to sufficiently eliminate germs. I also clean a surface, then the item, and then leave the cleaned item on the cleaned surface to air dry when possible. These are laminated pictures that are currently wiped down between therapists.
Every morning, I clean and disinfect all of the common surfaces and touch points within the home, especially those that are used by therapists coming into our house. This includes things that might not be commonly considered, such as the lids on packages of cleaning wipes. All toys are disinfected after each therapist. Good infection control, in my opinion, requires being mindful of the details, and it requires cleaning before and after each person. For shifts that overlap, I have the soon-to-be-leaving therapist wait in the opposite end of the downstairs area than the incoming therapist will be walking into while I clean those items and surfaces. I clean the area the outgoing therapist was in after she has left for the day.
For small pieces with lots of crevices, you can use a UV sanitation case. Those aren’t exactly cheap, so you could also rotate out those items, using smaller numbers and then bagging and dating them for a few days in between use.
All of our temperatures are taken daily, and I take the temperature of every therapist showing up on our doorstep. The thermometer is cleansed before and after each therapist. Please note, some COVID positive individuals don’t ever get fevers, so this also is not a guarantee, but rather a symbol that you are doing everything you can to think of the safety of those you interact with.
I give each therapist a squirt of hand sanitizer after I take their temperature, at any point on the shift they feel it is necessary, and at the end of each shift. Tri-fold disposable paper towels are provided for them to wash their hands as much as they want to, which limits the risk of them being recontaminated by a cloth hand towel that sees multiple users. I also frequently use spray hand sanitizer on Tony’s hands. Please note, individual agencies aren’t providing those items, we have had to locate and make those resources available at our own expense.
Gloves are available should they feel most comfortable using them during any therapy task, but I only require them for modules (such as tooth brushing) that could involve direct contact with Tony’s bodily fluids. Masks are required for everyone to wear, though everyone knows Tony still won’t tolerate one for more than a few seconds. Currently, I am making masks myself for everyone who works here if they do not have access to their own masks. Everyone is instructed not to do any paper documentation of data, but to rather use their own devices. If desired, we set up therapists with a ROKU app so they don’t have to touch our remote, as TV is often used as a motivator for Tony.
Please note a couple of other things we are doing as seen in these pictures: We keep all downstairs windows open as much as possible to increase ventilation, though we do reduce the size of the opening during the hottest part of the day. We also have two Dyson air purifiers in the working area. Tablets and other electronics are also cleaned between contacts with different users. Emily, Casandra, & Tony are pictured.
I do all of this and more (like daily changing out bed linens/blankets as needed), but nothing I or anybody else can do will fully guarantee protection from infection to anyone. Most people have numerous points of interactions and contact, and it is exceedingly difficult to be perfect with infection control 100% of the time. Mindfulness and precision are perpetually required under pandemic conditions, which can create a certain degree of mental fatigue. But solid infection control does lower risk of infection. One of the best things you can do is keep abreast of credible scientific research and the guidance of experienced physicians and researchers.
Tony & me. Everyone but Tony in our house is wearing a mask any time we interact with anybody else or go into public, and Tony is only interacting with masked therapists in home at this time.
I realize opinions and practices will vary, but in our home, we don’t have the luxury of doing anything else but taking this seriously. And, I know that for some of the therapists who work with our family, the reason they feel so comfortable coming into our home is the level of precautions we are taking.
I am going to end on the words of Florida resident Brian Hitchens, as they were presented by HuffPost. Mr. Hitchens, by his own account, wasn’t taking the risk of infection all of that seriously- until both he and his wife ended up in their local ICU. She’s still on a ventilator. “‘I thought it was maybe the government trying something…I’d get up in the morning and pray and trust in God for his protection, and I’d just leave it at that. There were all these masks and gloves. I thought it looks like a hysteria,’ he added. ‘Please listen to the authorities and heed the advice of the experts,’ he implored people in his Facebook post. ‘Looking back I should have wore a mask in the beginning but I didn’t and perhaps I am paying the price for that now….If you have to go out please use wisdom and don’t be foolish like I was so the same thing won’t happen to you like it happened to me and my wife.’”
Most people who get this virus will be ok, but some will face life-altering illness or death. I hope each of us can remember that what we do isn’t just about us. Some things, like masks and infection control, are also about protecting others if we are infected and contagious but asymptomatic.
This is one of those weeks where many unexpected things have dropped roots and sprouted up all across my schedule, and the rest of my unspoken for time has been dedicated to infection control aimed at providing the safest environment possible for those who work and live in our home. So this week, I am going to keep my post and my comments brief. And next week, we can all plan on spending slightly more reading time as I describe the infection control process in our current therapy environment and how it impacts the way we run our programs.
The past month or so, I have put up seemingly random pictures of bunnies or flowers, most of which were taken during community safety walks or drives that Tony requested. Like many things that could appear unconnected about what I do, there is a reason for those pictures. Hannah loves animals and cactus flowers. The bunny came to munch on mesquite pods while she was still sleeping, and I wanted her to be able to share that moment. The cactus bloom shots were taken on walks where she was doing school work or something else. Knowing how fleeting those bursts of crepe-like blossoms can be, I tried to capture some images for her.
Often those pictures are taken on the quick, and they don’t represent my best work. I have to move fast because Tony has limited patience to wait, or he wants to touch the cacti (which is definitely not advisable). Sometimes if we are on a drive, I am working fast because I am pulled off the road with my hazard lights on and I don’t want to become a distraction or disruption to the flow of traffic.
One of the shots from a drive was on max zoom for my phone because I didn’t want to seem like a stalker or raise up the specter of worry that I was filing a possible HOA complaint. I have never actually contacted an HOA to complain and I don’t plan on starting now, but that does happen and we all certainly have enough to worry about right now without that particular homeowner thinking I could be so inclined, thus I kept my distance on that shot…and the pictures only vaguely hinted at the shimmering nature of those glorious puffs of magenta.
I am so grateful for both of my children. Every single day I can feel the joy of being their mother, though I know I am not perfect at it. I try to do whatever I can, however small it may seem, to show them that they are always in my heart.
Jessi & Tony, with Pauline holding the drums, photo by Ariana
To Jessi
As you head off to start your doctoral program so very far away, my feelings will waft after you and linger long here and in my heart. Like everyone who has worked so many months with my son, I can never repay your patience with him. I am so very grateful for how joyfully you interacted with Tony every single week, and how kindly you accepted my suggestions for how to handle any challenges we were having during sessions. I thank you for your willingness to try new things, and your help in working towards improving his tolerance for working in sessions without me.
I deeply appreciate your desire to see Tony through your own experiences and not those of others, and for seeing in him the capabilities and strengths others often leave obscured by his list of diagnoses. You are a gifted therapist, but I understand the world also needs gifted researchers. We wish you every success, and that you remember to carry with you always an invitation to visit us in therapy any time.
A Quick Update for Families Applying for AAC Devices in AZ:
A couple of weeks ago, I received word that the order for the speech device approved in our latest appeal resolution had still not been placed. In following up with our DDD support services coordinator, I was told that the DDD department that handles AAC requests was not placing the order until they received another copy of all of Tony’s diagnosis documentations and quarterly progress reports. I, as a courtesy, had already provided them yet another copy of all relevant documentation and diagnosis proofs as part of the appeal filings. If you or your loved one are experiencing continued delays or requests for additional copies of documentation that seems to contradict your understanding of the notice to cure directions by the AHCCCS administration, please do not hesitate to do what I did, which was to contact the Arizona Center for Law in the Public Interest with your situation and concerns. We have been advised that as of yesterday Tony’s device has finally been ordered. Much success and love to you <3 Ariana
Some Listening & Reading to Consider
Dark Thoughts, by Jessi Teich
For the most part, I leave last names off of this blog. However, anybody Googling NMTSA, which I have listed many times as the clinic Tony receives Neurologic Music Therapy at, could have seen Jessi’s full name. Further Googling (like the kind I did when she was assigned as his therapist), would tell you she has publicly recorded and released quite a few songs, and Dark Thoughts is my personal favorite of them and I purchased a copy for myself many months ago. This is not a recommendation or a mention made at her request. I can tell you the soulful quality of her singing is definitely not produced by studio equipment. She has a lovely voice, and because her work has dropped notes of kindness in our son’s life, I am hoping each of you will honor her work with our family by checking her out on Spotify or wherever it is you personally use for streaming music.
Emily actually recommended these to me as something worth listening to, and I agree. I think Dr. Snowden’s point that the societal stigma which comes with diagnosis often increases the spread during epidemics because individuals with milder cases of illness often resist diagnosis, isolating, etc. to avoid those social negatives. Re-framing how we treat individuals who contract illness in situations such as these could be one of the more important advances towards protecting more vulnerable individuals that our communities could make. Because many of those vulnerable individuals are members of our vibrant disabilities community, I find both of these episodes to be recommended listening, and you can click on the titles above for links.
Dr. Walensky’s insights in her episode touch on many aspects of containment, but I think something important she discusses is the idea that social distancing and staying at home are really options that come with privilege. Many individuals are unable to do those things and provide the necessities of life for themselves or their loved ones. As our communities continue to grapple with the heartbreak pouring in from so many directions with this pandemic, my hope is that we will each take some time out to listen to the medical and scientific experts, and in doing so let their thoughts and wisdom guide our actions.
This is an article published April 8th, 2020 by the American Medical Association. I feel like some of the information contained in here is beneficial to therapists and other providers continuing to work with the public, uncertain of whether or not those they interact with could be asymptomatic but contagious. The AMA does not recommend isolating care givers or healthcare providers from their loved ones or the community, even if they are actively providing care to COVID positive patients. They recommend wearing the appropriate protective gear at work when contacting individuals with known or possible infections, hand washing as necessary, and avoiding contact with your face. Providing care for infected COVID patients with hand washing and using appropriate protective gear is to be considered “pretty safe,” according to the AMA. Changing clothes in the absence of gown coverings at work is necessary only if you are treating patients with a known or possible active COVID infection (that doesn’t apply to therapists who would be staying home when clients were sick but you can certainly change your clothes any time you return home as an extra precaution anytime you are returning home from situations with public contact or interactions), and solid infection control measures are advisable for anyone with reason to be concerned about getting sick who is going out into less regulated public spaces at this time.
While it is not recommended in this article, providers or concerned therapists can maintain additional precautions such as disinfecting work shoes and keeping them in the garage, having a family member follow behind and disinfect any light switches and door knobs touched on the way to the shower, and bleaching down the shower when finished. Please note, these are steps of extreme caution not recommended as necessary when appropriate protective equipment such as masks are being worn and hand washing is being carefully done. But, they may provide you and your loved ones with some additional peace of mind, and that is invaluable and worth some extra effort sometimes. Also, health care providers and workers receive special training on how to properly implement infection control, how to effectively wash their hands to reduce the spread of germs, and how to wear protective equipment correctly. If you are a therapist who has never had exposure to those practices, please contact your management team for recommendations on appropriate training videos for those procedures. You can click on the title above for a link if you are interested in reading Ms. Berg’s article.
The beauty of nature is always a kindness. Cactus blooms on a community safety walk, all photos by Ariana
I know this is a stressful and painful time for many families right now, and my heart and prayers are with those who are suffering. As I write during this time period, I want to handle our own current events with a more impressionist hand, and hopefully leave a picture that casts more light in certain areas, while neglecting the deepest shadows for now. While I have been ministering to a myriad of emotions for myself and concerns for our family, I have found that throughout this past month, I have been blessed with a great deal of kindness and I want to honor those involved.
There can be no kindness greater than that shown to us by Emily and Casandra, who have both affirmed to the agency overseeing their therapy programs that our home is where they still want to work. I realize there may be differing perspectives on allowing therapists (who have been deemed essential workers in Arizona) to come into a home if one of the members has risk factors. However, for myself, as the person with the risk factors, I can honestly say my breathing is in a much better place when my kiddos are happy and have their needs being met. To both of you, as you return to your regular hours this upcoming week, I can never thank you enough for everything you do to help our little man progress and grow.
While I was working on making masks and trying to find supplies to provide the safest possible environment for those who choose to work with our son, I received an unexpected text from a company that had provided Tony physical therapy services for three sessions only many months ago. The CEO was offering gloves to anyone whose therapists needed them. I had texted back, letting this individual know that we hadn’t been clients of theirs for many months, and that while we appreciated the kind offer, we expected this company to reserve those for clients that were actually current. I was told that they are an organization that cares, and if I needed them, they would be shipped right away, and they came two days later. I have blocked out the name of the agency and the CEO for this public post, but this was a greatly appreciated kindness indeed and certainly no small thing to me or our therapists.
We have since obtained additional gloves on our own because we don’t want to be a drain on the supply for their current clients. Emily pictured working with Tony.
A matter that is smaller, and perhaps off-topic for this blog, is a matter touching mostly me alone. Many months ago, I had purchased some CBD oil from a company called Lazarus Naturals. The CliffsNotes on that is that I am very allergic to their ingestible CBD tinctures. Some day we may try CBD tinctures with Tony for his anxiety, but this is a matter we need to coordinate with his medical team, and I hadn’t purchased anything from them for several months. I do however, still get e-mails from them. The day after I received some information about what therapy supports in our home would look like for a period of time as everyone worked to move into our new reality as cautiously as possible, I got an e-mail from Lazarus stating that anybody going through a hard time during these stressful times could contact their support team for a listening ear.
As I sometimes do, I fired off an e-mail letting them know how cool that was, sharing a very tiny bit about the weights on my heart, and that all I would ask of them was to reach out to their local healthcare workers with some TLC. A member of their team and I had several exchanges, and I thought the matter over with…until I received a package from them with a personalized note from the rep I had been chatting with on-line. To the best of my knowledge, they have no idea I write this humble little blog…the rep in question was just being kind to me.
Picture of part of the packing label in the box.
And it was a kindness I very much appreciated. I certainly could not be considered a good or even a loyal customer by the numbers, and many businesses would not have felt like my past purchase history with Lazarus warranted any sort of gesture but a return e-mail…if that. For those of you that don’t remember what happened when Amazon accused me of writing reviews for compensation (those of you who have been reading with us for quite some time already know this, but it is a very easy matter for me to prove that I most certainly was not): I had spent what felt like a blood curdling amount of our money at their business and was still told that if I contacted them again about the matter they may not respond to me.
I love it when a business shows they have heart, and while that is the sort of gesture that would earn loyalty if I were on ongoing customer of Lazarus, mainly I was just touched because team Lazarus had no data on their end to even remotely suggest they’d get any return on investment from me for their care package. I cannot say right now what it meant to me in that moment to have someone somewhere do something kind for me that they absolutely didn’t have to do. Each of you may shop where you like, and buy what you will. This, as I said, was a personal matter for me that lifted me up when I was in a darker place.
The very next week, I got a call about Casandra coming back and then the offer for gloves. The week after, approval for Emily to resume full hours. With so much going on, I know that I have been blessed still with a great deal of kindness, both great and small.
We definitely do in this household. Emily, Tony, & I saw this sign on a community safety walk this week…much love to the person who put it up. All photos by Ariana for this post.
After I ended last week’s post by talking a tiny bit about some of my personal health history, I figured if I didn’t put up something quick each week some of you might worry I was sick or dead. While neither of those conditions currently apply, I am going to keep this shorter and perhaps less artistically nimble for today so that I can make sure I am able to take enough time for myself and my family right now.
My very good friend Gena – hello 🙂 -commented on a picture I posted with the mask I made for Emily a couple of weeks ago, saying that she thought my sewing looked “great” to her. My much treasured friend, you are always very generous and kind with me. I replied to her the truth, which was it was the best of what I had produced up to that point. Since many of you might not have seen that exchange on-line, I figure this week I need to give the Universe its due.
There’s two things I directly attribute as an inheritance from my grandmother: her love for helping others and her sewing skills. Many of the masks I have made up to this point have had some sort of technical problem, but let’s just start out with the first ones I made for myself.
The first one I made for myself. I had to use thicker hair elastics to hold this on my ears, and good golly the ruffles weren’t intentional. The seal is decent, but yeah. I don’t really like ruffles…photo taken during community safety. Let’s get a closer look at just how bad those ruffles are and the uneven sewing line across the top, shall we?Second mask for me, I like to wear this one while I’m spraying virus-killing chemicals around the house because it keeps more of it off of my face. Note all of the threads I didn’t realize I forgot to clip, and again, the uneven sewing lines. I managed to figure out a better way to work around the bulky hair elastic for this one…This one is probably my favorite in terms of fit and protection. The fabric doesn’t fray, but notice that I still had some issues with uneven cutting that I didn’t notice until after I looked at this picture. I produce these in a rush because I have a lot of things on my plate right now, so I don’t aim for perfection… I aim for them to work and that’s it. I know I gave some of you this style of mask and I thank you for honoring my efforts by asking for one despite the imperfections <3
Believe me, I have more examples where those came from, but I don’t want to take up your whole day looking at more examples of a similar nature. The point with all of these masks isn’t to be perfect, it is to protect everyone and slow the spread down enough to keep our healthcare system from becoming overwhelmed. I think one of the most considerate things you can do for the people around you right now is to wear one- even if it doesn’t look perfect. Even if you had to ask me to make one for you (and some of you have)…I am happy to share my sub-par sewing skills with anyone who needs them right now 🙂
You may have noticed Tony isn’t wearing one in the pictures above. As a kiddo with a history of significant sensory issues, Tony really won’t tolerate one, but we are trying desensitization work with one that I purchased from smartknit.com. We’re working on five seconds right now, and only making it to that about half the time. At this time, all public therapy is on hold, so this doesn’t really pose a risk to anybody around us. I am happy to wear one when we are out walking in the community because it increases the desire of others to “socially distance” me as we are walking by… and I’m good with that right now under the circumstances 😉
Tony pulling off the smartknit mask during our therapy work today. The look in his eyes says everything about how he feels about this right now…
My honest opinion on the smartknit mask, incidentally in case you need to know for someone you love, is that there are mild fit issues because it’s loose enough not to pull on the ears, and the fabric might not be soft enough to really please our particular kiddo. Because our son has Sotos Syndrome, which comes with a larger noggin generally, his head is definitely adult size at this point, so that isn’t a factor in the fit. There is a filter pocket, so you can add a filter of your own if you would like, but generally the knit fabric that mask is made of isn’t the best choice for a covering of this nature in terms of protection, so I consider this to be something we are using to see if we can help transition him to a mask that provides better protection and filtration over time.
Whatever you wear, I wish you health and safety. Much Love, Ariana
A flash of joy found during a community safety walk April 4th with Tony. A member of our community painted and left this sweet bird to cheer the trail for all who passed. I took a picture and left it for the next person to find. All photos in this post by Ariana.
During my early elementary school years, we moved around quite a bit. A year here, six months there, two or three years in the same place if we were very lucky. During one of these longer stretches, I had a couple of girls that I had become pretty close friends with. Jody, with her jet black silky smooth hair that was always braided beautifully in even plaits I envied by her mother, and Margarita, who had gifted me a necklace of turquoise colored beads that would be a favorite of mine for many years. I loved them both equally.
Near the end of my stay at that school, there was a sudden shift in our group. Margarita had become an accepted regular in the most popular group of girls at our school. She asked them if Jody and I could join their group, and the answer was that I was cool enough but Jody was not. We were both told this by Margarita, who decided the social status membership in that clique afforded was important enough to sever ties with anyone outside of it. I was also told that if I wanted to be part of that group, I would need to stop talking with Jody.
I would love to tell you this is a story about what an awesome friend I was, but it isn’t. My family was very poor, and there were a lot of other issues. I was frequently teased for my dramatically out-of-date and patched up clothing during my first few elementary school years. And though I was past wearing things with patches, and all of us at that particular school were on a pretty similar economic footing, I also felt like being a member of that group would remove enough unpleasantness from my school days to make it worth my while. So I summarily told Jody that would be my decision, and the image of that hurt settling deep into her eyes is a picture I could paint until this day.
So I clustered for a nearly a week with these girls, as my internal misery increased daily. These girls were deliberately mean to other people, and that is something I generally preferred not to do unless I was defending myself from the verbal attacks of another. By day five I had enough, and during the lunch recess I heatedly told them how horrible I thought they were to other people and that I wanted nothing to do that. I am not sure if I actually defiantly flipped my blonde hair (because it was much lighter at the time) or if I just mentally added that in because it’s how I felt, but I stormed off to find Jody and apologize.
Apologize I did, and she graciously accepted that with a shy smile, but there was still always a shadow of hurt crouching in the back of her eyes. I learned many things that week, but one of the most important is that popularity isn’t my thing. Being able to live with the choices I make is. That doesn’t mean I’ve never hurt another person since. I regret to inform you I am quite imperfect and very human, and while I do the best I can, sometimes I do unintentionally mess things up. Much of the time though, when I act on something, it is because I am trying to do what I think is the right thing.
A tiny bunny finding a safe meal in our yard, April 10, 2020.
Now, if you have correctly guessed that this ramble foreshadows that I am about to say something that I suspect could be unpopular, kudos! I sincerely applaud you for reading the undertones of my prose. But I ask you to bear with me anyways and remember that these are difficult times for many people, and each of us handles life’s challenges and crises a bit differently.
I have heard worries from some who work in fields considered essential by their local governments that they will be viewed as selfish by some for doing their jobs. And that those who benefit from receiving their services will likewise be viewed as selfish for allowing them to work. You know, I don’t think there’s anything selfish about trying to put food on your plate or maintain a roof over your head as carefully as you can if you are able to do so in a safe manner right now. I think these are scary times for many people, and we will need to be patient with each other first and foremost, even if our other needs and wants may differ.
This virus isn’t going anywhere any time soon. We all have to be as careful as we can be right now to slow the spread down enough to prevent hospitals here in AZ from being overwhelmed so that our healthcare heroes can provide the best care possible, but I don’t think that means we should each completely turn our backs on those around us for the next year and a half or so until a vaccine is available.
I see many things in the news that make me sad. Neighbors sawing down trees and blocking off driveways because their new neighbor has an out-of-state license plate and they are sure those newbies must have COVID. Individuals luring instacart shoppers with high tips just to zero them out once the delivery is made. Sometimes, unfortunately, the “survival of the fittest” mentality doesn’t bring out the very best that our species has to offer.
As a person with mild asthma and a history of liver disease, I understand the need to be cautious. And for therapists who have felt comfortable returning to our home this past week, you know exactly how intense I am with all our infection control and precautions. But I also understand nothing I can do, including shutting my doors to everyone outside of my family and only accepting deliveries, will completely guarantee my safety.
I read Dr. Cara Christ’s publicly available letter to Governor Ducey when she recommended “enhanced physical distancing” here in Arizona. I loved something she said, and I think it is important for all of us to remember. She said, “I have significant concerns about the public health impacts a prolonged social distancing strategy could have on the mental health of Arizonans.”
And she is right. We have to balance out the holistic well-being of fragile populations within our communities as well. Declining mental health also can have a negative impact on the immune systems of the very individuals we are trying to protect right now. I think we need to ensure that while we are being cautious, we are also being compassionate. Humane. And that we are not permanently stigmatizing certain groups because of where they work, or who they work with/for. I don’t think surviving this will mean nearly as much to me if I cannot stand the person I became to live and “tell the tale.”
I have read the comments of healthcare experts who state we should be acting as if anybody could have this virus because we know that asymptomatic cases of infected individuals has happened and will continue to happen- that means, somebody’s trusted loved ones tested positive but never developed symptoms. You cannot avoid a person working in a certain field and expect that to protect you from infection. You must be careful about hand washing, mask wearing, disinfecting, and standing a sufficient distance away from everyone if you truly want to decrease your risk.
I know the fear when it comes to this virus, and when COVID came to our community, I had decisions to make about whether or not I would lean into the fear or lean into the compassion. I am sure I will do none of it perfectly, but I want to lean into the compassion- this day, and every day for the rest of my life. Sometimes I will fall short of everything I want to be, but I will give myself some grace and pick myself up to try again. Because as Hannah reminded me when I messed up the sewing on a mask two days ago, “mistakes are just a learning experience.” And learning experiences shouldn’t cause us to give up- on ourselves or one another.
My rose bush from this week, which somehow manages to bloom and not give up despite nearly 8 years of incredible neglect. No fertilizer, inadequate pruning…you name it.
Appeal Decision Received April 2, 2020, Photo by Ariana
To B.L., Mr. T.J., and Ms. S.J.
Heaven knows this has been a long and stressful week, and all my artsy prose has failed me. I am left with whispy words of gratitude, but I give them to each of you none-the-less. THANK YOU, a thousand times over, each and every one of you for the support you have given in helping us through the long application, denial, and appeal process for a fully functioning AAC device for our little man. We are profoundly grateful to each of you for your professionalism, your time, and your support. And to T.J., an additional note of thanks for sending a picture a couple of days in advance to your evaluation so that we could talk to Tony about your visit and help him understand who to expect. Such a simple thing helps him to feel less scared, and I thank you for taking the time to care enough to help put our little boy a bit more at ease. Thank you, each of you, for helping us win access to approval for this medically necessary equipment for our son.
To A.S.
Doorstep Angel, thank you for spreading some cheer. When other people we knew much better at one point let Christmas with us pass unacknowledged, you warmed our hearts and our doorsteps with tasty treats. And our family was deeply touched by the thoughtfulness of the recent bundle of toilet paper, hand sanitizer, and cookies that you left. Thank you for taking time to write me every now and then to see if we are ok. You are a sweet and thoughtful person, and we deeply appreciate your kindness to our family.
Some Doing to Consider
The mask I made for Emily, which uses fusible interface, an additional layer of non-woven material on the inside, and has a pocket for a HEPA filter cut out to be inserted on the back side. Emily will be allowed to return to work in our home for limited hours starting on Monday. Photo by Ariana
Family, friends, loved ones, and anybody taking the time to read this: life can be fragile and these are scary times for a lot of people. I want each of you who are able to go be a doorstep angel for somebody else. Perhaps someone you know needs help shopping. Maybe some of my fabulous sisters-in-law, who truthfully put my crummy sewing to shame, could consider sewing masks for those unable to do so themselves. You could reach out and call or send a kind note to someone you know working in healthcare. Especially if they are on the front lines providing hospital care to those who are ill with COVID, they could probably use all of the love and support you can give right now. And with that, I am going to sign off for this week. I have been sewing masks for our family and therapy team members, sanitizing, and generally kept crazy busy…and I must get back to it by putting away some laundry.
