Ariana's Posts

On Ability, Access, and Representation

Posted on by Ariana
Tony, Oct 3, 2015, trying to cover the flash on my phone because the light was too painful for his eyes. I currently keep the flash off at all times. Photo by Ariana.

Sometimes talking to anyone can be a tricky thing. I feel like an apology just as readily needs to grace my lips as anything else I could possibly say, because often when I have personally given offense, it was most certainly not intentional. What one person in a group finds offensive another does not, and that is never more true than when you are dealing with a group so diverse in needs and experiences as the disabilities community.

I am going to refer once again to an essay written by the Harriet Tubman Collective, as it is found in Disability Visibility, edited by Alice Wong. The essay authors were criticizing the use of the term “differently abled” because it “…is considered offensive within the disabilities communities.” They went on to explain that “the phrase ‘differently abled’ suggests that we are the locus of our disability when we are, in fact, disabled by social and institutional barriers.”

I find this to be an interesting point of discussion on a couple of levels. One, I have used that term myself on this blog, and some of our little man’s therapists have used it also. Certainly none of us wanted to give offense to any body. I can, of course, only speak for myself here when I say anyone who was bothered by that has my most heart-felt assurances that no offense or minimizing was meant.

As I see it, sometimes the important thing becomes finding out how each individual feels and what terms they want used about themselves and their own personal circumstances. Listening to each other as individuals about what we feel that we need to be supported- and honoring those expressed sentiments- is one of the best things I think we can do.

Because the other side of that coin is that sometimes, especially when there are sensory differences involved (as there are for our son), a person does have a different ability. For example, Tony’s hearing is a great deal more sensitive than most people’s. He hears sounds other people miss. Nothing has been taken away from his hearing. There was no “less than” as others would see it in what he is physically able to do because of that, but rather a “more than.” This, in the literal sense as I see it, could be considered a different ability. Of course, this enhanced hearing does lead to life feeling different for him and for us. There are situations we have to avoid because they feel physically very painful to him because his perception is that they are far too loud, and this often excludes us from participating in activities considered to be “normal” cultural or social events within our community.

This hints a bit then, at something that could be a societal barrier as referenced above. I believe a couple of excerpts from Andrew Solomon’s Far From the Tree also illustrate this concept a bit, and I am providing screen shots below:

When reading interviews in From the Periphery, I noticed a reoccurring experiential theme in the words of individuals who suffered a change in mobility from an accident, illness, or other trauma. Mara Bristo, for example, talked about the first time she tried to go to a store after returning home as a wheelchair user. She said, “So the first day, I went to push to the grocery store, I pushed and realized the curb. So I went all the way around the block, which at that time was hard for me to do physically. And then I realized there was a curb on the other side.”

Our communities are structured in a way that some can’t readily access necessary buildings or businesses. Personally, in my lifetime, I have not heard many conversations revolving around the importance of modifying our communities so that they embraced the needs of everyone living within them. The ADA has certainly improved some things, but not others. How we think about the needs of disabled community members often shows even more cracks with what isn’t being done during emergency conditions such as our current pandemic. I read the following, for example, in an article written by Erin Donnelly:

Sky Cubacub, writing in Disability Visability, talked about how clothing designed for individuals with disability who cannot wear what is typically produced for the mass market often is centered “mainly on function, with almost no concern for aesthetics,” with “most clothing made for disabled people cater[ing] to senior citizens.” Few manufacturers produce products that acknowledge that a person’s desire to enjoy attractive clothing will generally remain despite other changes in physical circumstances.

And, when was the last time any of us clearly remembers seeing a leading man or woman in a wheelchair? How about an amputee, or someone with a feeding tube? A non-verbal person maybe? Was Christopher Reeve still cast as a heartthrob after his accident?

If I woke up altered by an injury, illness, or stroke I would still have the same desires for intimacy and connection. I would still want to be seen as worthy of love and my marriage. I would still adore all things glittery and I would prefer to wear fabulously loud clothing. Would I see a recognition of my right to feel and find those needs being met represented in our community?

I saw media coverage in the New York Times and other prominent media outlets when Gigi Gorgeous, looking stunning as per the cultural norm for weddings, as a trans woman, got married. I watched a super sweet commercial from WalMart last year featuring a gay couple on a first date. Such a glimmering emergence of representation for many within the disabilities community is nowhere to be found, and if it is, only for those individuals considered “higher functioning” or more closely approaching what we consider to be “normal.”

As the mom of a kiddo with a diagnosis for every year of his life and behavioral challenges most people aren’t used to seeing within the community, I realize that our family and our son may see and experience things from a perspective that others don’t. I also know that others in this community are certainly seeing and experiencing things that we are not. Only when we hear everyone’s pain, their words, their stories, and their needs can we begin to create community spaces that truly embrace us all.

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August Gratitude & Some Reading

Posted on by Ariana
My mother-in-law, and her husband for the past 20 years, Bob, as taken when Andy & I married in 2003.

Bob

The person to whom this note is dedicated can no longer read it with mortal eyes, but he was given these words in person from me privately some time ago. I share them with you now as a brief commemoration for how a moment of thoughtfulness from him touched my life personally.

I have been to many wedding receptions, and the edges of these memories can seemingly melt together and loose their own distinct hues, with my thoughts on the events themselves blurring and realigning around shared themes. But one reception remains unduplicated anywhere in my experiences. Many receptions have some form of father-daughter dance, which starts with the bride and sometimes gets extended to include all of the fathers and daughters in the room. I have always sat those out, steeped in my own life experiences, soaking in wistfulness of sorts. Simply put, I was never at a wedding reception for such a dance with any sort of father-figure to me.

That much was generally a constant, except for the reception in question. I was standing off by myself, as I tried to redirect my thoughts to something other than the awkwardness of never being able to participate in that type of dance. I looked up just as Bob was nearing me. He held out his hand and asked if I would dance with him. This meant much more to me than he could have realized at that moment, though I did certainly thank him as generously as I could during the dance itself. A few years later we talked about it, and I once again shared with him how much that moment of kindness had meant to me. He said he thought that it might be a bit hard for me, knowing some about my personal story, that he was family to me, and glad he could be there to dance that dance with me.

So for Bob, who passed away last month, and was always very kind to me personally, I share with each of you this memory and my ongoing gratitude for it.

Some Reading to Consider

“From the Periphery, Real-Life Stories of Disability,” by Pia Justesen and “Disability Visibility, First Person Stories From the Twenty-First Century,” edited by Alice Wong.

Both of these books seek to do something similar, I think, in that they present narratives from the lives and experiences of disabled individuals, and as Ms. Justesen puts it, “to end the invisibility of disability.” However, I actually recommend that you read them both, starting with Ms. Justesen’s book. Doing so allowed me, personally, to notice something important.

I don’t mean to paint either book as bad, though I recognize that what I am about to say could be seen as a criticism of sorts- though if it is, I think it should only be seen as a criticism of our society, which puts more value on those individuals considered typically functioning in mind and body. Ms. Justesen, as a non-disabled individual, is giving us interview transcripts. She is assisting disabled individuals to bring their words into the public eye. Ms. Wong, as an activist and research consultant, and as a woman with disability herself who is only acting as an editor, brings us the thoughts of contributors writing for themselves. Thus, they have brought their own words to anyone interested in reading them.

The difference to me, was palpable. The eloquence of Ms. Wong’s contributors, and nimbleness of the prose, honestly were a delight to read. While I believe everyone should hear the words of everyone involved in both books, for me personally, the second book was the one I enjoyed reading the most. That being said, I do have a few additional comments on these books, and why I believe the words therein should be widely read.

I think it is important to note something said in the essay contributed to Ms. Wong’s book by the Harriet Tubman Collective regarding the Black Lives Matter Movement. “Specifically, many were confounded as to how a movement whose primary focus is ending police brutality, could outright ignore the violence experienced by Black Disabled and Deaf people when statistics prove that at least 60 to 80 percent of the people murdered by police are, in fact, Disabled and/or Deaf people.” I personally think this speaks to a bigger issue, one that I have spoken on privately to close friends. Disabled individuals are the most underrepresented, marginalized, and disenfranchised members of our society in pretty much every area you can think of. And it becomes even harder still for them if they are in a racial or ethnic minority.

And, even with both of these books, there seems to be a hierarchy of what is an acceptable disability to speak to mainstream society about when it comes to disabilities justice. I didn’t see anyone like my beautiful son represented in anyone’s words or interviews in either book. Individuals whose disabilities are accompanied by certain behavioral challenges or more significant intellectual disability don’t seem to get their stories shared as often. And that, I think, speaks to another area for which we, as a society, may be failing some of our members. When we talk about stories of disability as a whole, our culture tends to celebrate those that “rise above” what was expected of them. Perhaps then, it is our own expectations (if that is the case) that should be challenged.

Now, Ms. Wong’s book does come with content warnings at the beginning of some of the essays in case the reader might find them triggering, and for the sake of my readers I am going to be a bit more specific about one of them because I do know that a couple of my readers would prefer to avoid a more detailed description of masturbation. No judgment from me for either the author or those who would prefer not to read that, I simply seek to create a safe place where everyone’s wishes can be honored. For those of you that would wish to avoid such a detailed description, much of Ms. Scott’s essay is not for you, though you can read the last seven paragraphs and still get something important out of her message without reading anything that you personally would find uncomfortable.

I think those of us who have been so blessed as to live the privilege of a completely normal or mostly normal functioning body/mind need to hear about the experiences and feelings of those who have not. Age, illness, or accident could alter any of us at any time, but my hope is that by becoming aware of others who have walked these paths, none of us will have futures filled with socially acceptable invisibility.

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A Brief Note to My Subscribers

Posted on by Ariana

This past week, there was a non-COVID related death in our extended family. I will be taking the next two weeks off from posting and writing to provide extra support to my children as they process this loss, and to avoid vying for the time/attention of those in our family who will also be providing extra support to a treasured loved one that is grieving deeply at this time. At this point, I plan on resuming posts around August 7th, I thank you for your patience, and wish each of you health and safety. <3 Ariana

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Me, Myself, And My Mental Health

Posted on by Ariana
Me and my glittery shoes visiting the dentist for repairs in May, all photos by Ariana.

Historically, I dread my own personal dental visits. I am Novocaine resistant, and I have had far too many dentists that never managed to get me numbed down enough to stave off a miserable experience for anything that needed to be taken care of. My most recent dentist (who sadly just moved to another state), had great technique all around and honestly I found myself thinking at more than one visit to repair something over the past couple of years that it was the most relaxing moment of my day. Of course there was still the poke of a needle, and brief moments of discomfort- that is unavoidable when a repair needs to be made. But the me of 10 years ago would never have imagined any scenario where a dentist visit could become the most stress-free part of my day.

The me of today would waste a great deal of time enumerating in one post why dental appointments seem almost meditative now. And that was before COVID. Trying to navigate and survive a pandemic can be a significant mental health challenge for anyone. For families of loved ones who need significant medical, therapeutic, or behavioral healthcare supports, this additional strain on already difficult circumstances can create a sustained internal crisis. Everyone’s needs and experiences matter in our family and in each of the families walking a similar path, but today I am only authorized to be speaking on mine.

A good friend of mine who lives out of state says that I sometimes seem like I am trying to be superwoman. I’m not superwoman. Not on any given day. I am only ever trying to be the best parent I can be in our circumstances to both of our beautiful children, and sometimes I have to completely tamp down on my emotions to effectively deal with an immediate crisis until it’s a safer time for me to process all of those feelings. What we’re all going through right now isn’t really going to be short term from everything I can see, and that does not allow me to rely on putting things to the side until a better time.

I’m not really going into specifics at this time for the things that have preyed upon my own ability to regulate my emotions and fears. I think many of us can all fill in our own blanks from things that we might be going through right now and that is all the picture of that I care to create for now. I will, however, talk some about how I have personally been trying to manage the impact to myself in our current circumstances.

I have some old standby coping mechanisms that help me pick myself up as often as I can, but sometimes those fail me. Typically, I enjoy a bit of escapism through reading. Generally, I really love science fiction and fantasy. Back in March when I was trying to give myself some mental time away from everything that was happening, I checked out a couple of books that I hadn’t read from authors whose works I generally have liked in the past (R.A. Salvatore and Anne McCaffrey). The moment Corbin got shot in the head, I had to put the first book down. I didn’t make it past page 9 of the second book because I emotionally couldn’t handle the discussion between the two parents about to be overtaken in their ship by a hostile alien race as they discussed whether or not to give a “bitter” suicide solution to their young toddler to protect her from the anticipated cruelty of capture. I tried a Sylvia Noble book that I purchased back in December when the authoress was visiting our local Barnes & Noble. I have never read any of her books before, but I thought “what the heck, she’s from Arizona and it could be awesome.” I hit page 231, and Kendall was planning on searching somebody’s office while they were gone. Nope, I couldn’t handle the tension from the possible outcomes and had to put it aside for a while.

March 22, 2020. Trying to put on a happy face for a good friend, but not fully succeeding.

Sometimes you can tell how delicate my emotional state is by how much romance I’m reading, because there’s a fairly typical plot formula that almost always involves a happy ending with those books, and when things get harder for me emotionally, I find more challenging dramatic elements that are normally well tolerated by me to be quite triggering. If things are too emotional and stressful in my personal life, I need a break from the imagery of the harder moments of real life with my reading. If I can’t even read romance, my internal state is stretched quite tight.

Towards the end of March, I couldn’t read anything and my mental state stayed frayed that way for nearly two months. I tried, I did. When that happens, I have to focus on something artistic or musical. Those types of activities can ground my mind in the present but absorb enough of my concentration that I am pulled away from ruminating upon my heaviest concerns. A lot of what I do with my eye shadow these days is what my limited schedule can accommodate to nurture my artistic side. I find playing a bit with color to be soothing. I decided to learn the ukulele because that instrument to me has always sounded more bright and cheerful than others, and usually my mind is only able to stay fully in the present if I am having to learn new things about what I am doing.

All of the infection control cleaning has made it hard to do some things that are important pieces of self-care for me. My strength training and yoga have taken hits here, because I can’t fit all the pieces of what is good for me into what is necessary right now. I get some strength training in 2-3 days a week, and yoga about three. Meditating has also been sprinkled in randomly here and there. I spent extra time when I could watching fun things with Hannah.

None of what I was able to do was enough to completely carry me through the end of March. I feel like if those weeks had a theme song, it would be “Fear of the Dark,” by Iron Maiden… but it was my own thoughts and worries that were stalking me and clawing at my ability to sleep, making me fearful of dusky solitude. My mental and emotional state is never good when I can’t get at least 4 hours of sleep a day, so I started taking Melatonin. Without it I was worked up too much and unable to fall asleep.

I consider myself to be more of a spiritual person than religious at this point, and I’m not here to say anything to convince anyone to do anything differently on the matter than what they feel in their own hearts. For me personally, I still find prayer and meditation to be joyful. Some days these are more helpful to me than others.

A couple of weeks ago, with a smile that looked and felt a little less fragile.

A lot of what I do when I can’t provide sufficient levels of self-care is playing some mental games with myself. The “I’m so lucky” game is most helpful to me. Shifting my focus to what I feel lucky to have helps me to actually see more of the good things for what they are. I know some of you might read about some of our challenges and think luck isn’t to be had here. But it is. And I am not just lucky that Emily wants to still work with our family. We are so very lucky that Casandra also has chosen to work here, because what both she and Emily do cannot really be done with Tony successfully via teletherapy. We are lucky to still have Amara and Chris on our therapy team. We are lucky for the patience of Acadia and Pauline, who have taken the helm of Tony’s NMT programs via telehealth. We are lucky for the guidance Stephanie and Cecy still provide.

I also play the “at least” game. I have heard of multiple people who also do this. The gist is, when something happens that hits me hard, I try to find the “at least” moments…those little things that kept it from seeming worse than it was. “At least” I know enough sewing skills to make masks. “At least” I had material to make masks with right away because I had several quilts I couldn’t find enough time to finish a few years back. “At least” I can find time to exercise at all, even if it’s not as much as I want for my own personal goals.

My answers don’t need to be your answers in this or anything else. But each of us will have to find some things that help us personally stay afloat when life starts flooding us with negative events and emotions.

Ariana's Posts

So Lucky

Posted on by Ariana
We have worked to expand Tony’s tolerance for others doing hair cuts with electric trimmers and scissors with Emily during habilittion. All Photos by Ariana

This week, I really wanted to pull up the keys of my laptop and wrap them around my thoughts to skip out on writing a post altogether. Situational burnout has settled in like rusted dust, like a slowly tightening choker pulling me into an emotional exhaustion thicker than quicksand. Sometimes it feels like I am stuck in an endless knot of cascading dominoes, with one event falling into another and constantly trying to knock me about.

As I stared down my internal apathy, I thought about this: I really am so lucky. Tony and our family are very, very lucky.

We have someone fantastic who wants to provide (and feels comfortable doing) habilitation therapy for our son. During any time period that makes us lucky. But right now, during an escalating pandemic? Profoundly lucky.

Emily still needs to spread out the cutting over smaller sessions over several days so that Tony doesn’t become overwhelmed and melt down from the sensory input he finds aversive.

Many families have lost therapists that they might not get back. Therapists who might want to work but no longer have childcare. Therapists who have risk factors and are concerned for their own health and need to look after their own safety right now. And of course, some families are concerned about the possibility of a therapist bringing COVID into their homes and have themselves paused services.

Enough families are in need of therapists that the Division of Developmental Disabilities (DDD) is providing emergency approval for parents to become the paid habilitative provider for their own kiddos if need be. I am so lucky that I don’t need to do that. Sponging away additional time out of my schedule to fill out reports on top of already providing the services/supports (as I have done and always will do without being paid for it when therapists are on vacation, etc.) would feel suffocatingly stressful right now. And I am profoundly grateful that I don’t have to do that.

Although, if our family had lost income during this pandemic, I know that I would be grateful for the opportunity DDD is providing to be reimbursed for what I have always lovingly done very much for free. We are so very lucky that my husband has not lost his job as so many have right now.

The most recent hair cut saw him sitting for the longest period of time that I witnessed while she worked on his hair. He played with toys and listened to several songs on YouTube, but seeing this amount of sitting from him for something that is harder for his sound sensitivity, tactile defensiveness, and ADHD was pretty cool.

I am so lucky. I woke up this morning healthy. Andy woke up healthy. Our beautiful children woke up healthy. And next week, we are so very lucky that Emily is coming back from her summer vacation to resume habilitation work with our little man. So, so Lucky.

Before you go, please remember that luck isn’t guaranteed to anyone. I am going to ask you to read through a couple screen shots from the news I read today:

Our local Arizona front-line healthcare heroes are stretched to the breaking point. When Lauren, one of our state’s very own ICU nurses, said “You know, it hurts. It hurts to feel forgotten by your own state…” later on in that CNN interview, she wasn’t asking for kind words. She is hoping you and I and every other Arizonan will listen to what healthcare providers and top scientists are recommending when it comes to staying home as much as possible and wearing masks everywhere we possibly can. Because if we don’t, we might not stay so lucky, and the swelling wave of COVID patients flowing into and flooding hospitals hoping for help certainly won’t be either. Because there will far too many patients to be able to help all of them or safely provide care for. Sometimes it takes more than luck to have things go well.

And now, I am going to let my emotions sink into that quicksand and sign off so I can do some cleaning and everything else I can so that luck isn’t the only thing I can hope to rely on.

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July Gratitude & Some Doing

Posted on by Ariana
Tony & Emily walking during community safety last week, photo by Ariana

Emily

I know that there are plenty of people I still owe a gratitude note, and some of you may remember that Emily has already received one a little over two years ago. But that was way back when she was Tony’s music therapist, with a very different role and significantly less time and involvement with his care and therapy programs. The truth is, most of the breathing room I currently have to do anything for myself I directly owe to Emily having taken on the role as Tony’s habilitative therapist a year and a half ago, and the extent of that debt can never hope to be settled even by a second gratitude note.

Emily, thank you for choosing to work with our family. We know you had many offers and other choices you could have made. Some of you may not be aware, but given where we live and the complexity of our little man’s circumstances, it is unlikely we could have found anybody else to take on that role for quite some time (if at all) had Emily chosen to do something different. For this alone we are profoundly appreciative. We know again, Emily, with recent circumstances that there are other choices you could have made, and I feel indescribably blessed that you have chosen to continue working with our family in these turbulent times.

Emily, your willingness to work with Tony by yourself so I can take naps on those days where sleep was more limited has saved my sanity on more than one occasion. You are cheerfully willing to try any therapy technique or target that I recommend. You patiently work with Tony while I assault your ears with my ukulele practices, write my posts, or clean things around the house. I wouldn’t have made any of my dental appointments over the past year if it weren’t for you. Thank you for seeing so much good in our little man and keeping him safe during those appointments. Thank you for being willing to cut his hair sometimes so we can help get him used to other people doing so. You have helped me keep our little man’s community and public therapy programs running as smoothly as possible, and we couldn’t have accomplished nearly so much without you.

And, you have listened to me with kindness and compassion when my heart has been ripping apart and breaking from other circumstances. I am ever grateful for every way you have supported Tony and our family. A note is not sufficient, I know it is not. I could chase after you with an infinitive number of “thank you’s” and I wouldn’t feel like the job of expressing the depths of my appreciation would be adequately done. But Emily, I will leave you with a couple still because it is, again, the best I can do on these pages: thank you. A trillion times over, thank you.

Some Doing To Consider

Screenshot of one of today’s local stories…

I had some reading that I thought I might discuss this month, but I decided to postpone it until August. The reason is that I feel like right now is a time where “doing” is more important in our communities, and for those of you who are able to spend money anywhere right now, I honestly would encourage you to do so in different ways than books if you can afford to do so.

These are unprecedented times within our communities. Many have lost their jobs, or have had their earning capacity limited in some way. Families have lost loved ones to COVID whose ability to work was providing the basic necessities of life for them. Food banks and other service organizations that help members of our community that have been impacted by these events need additional support right now from those of us who have been comparatively blessed during these difficult times. If you, in reading this, find that you and your family are in a luckier position, maybe take the money you might have spent on my reading recommendations and donate it rather to such an organization.

In Arizona, our numbers are dramatically on the rise. This rise cannot be attributed to more testing, as the percentage of positive cases has also been precipitously rising (currently 24% of tests are coming back positive in Arizona according to NPR). At this point studies have demonstrated mask wearing is an effective way of reducing and preventing spread with this virus, and I think it is fabulous that our state leaders are beginning to encourage mask wearing in public spaces- but I believe that alone is not enough.

If you scan the headlines, so many of the events where large numbers of people ended up getting infected originated from things like smaller surprise birthday parties, where one asymptomatic infected attendee infected other family members, who returned to those they lived, and the virus continued to spread that way to those individuals also. I have seen incidents detailed with anywhere from 18-80 infected individuals confirmed arose from one special family gathering. Some of those infected individuals have already died.

I know that many people will survive this, but the death rate is higher than the flu for almost every demographic, and dramatically higher for certain age groups or individuals with chronic conditions. I am going to borrow an analogy from Emily here: even if you had only a 5% chance of dying from this, comparatively speaking if someone told you 5% of the skittles were poisoned in a bag, would you still keep sticking your hand in and taking a chance you wouldn’t eat one of the poisoned ones?

Another screenshot from today’s headlines.

My personal opinion, even if it is hard to hear for some, is that if we really want to preserve lives in a nation where nearly 130,000 have already died from COVID, we are going to need to wear masks when visiting friends or loved ones that don’t live with us. In Arizona, we’ve implemented our crisis care plan. That means as hospitals become overwhelmed, they will start deciding who they provide treatment to based on a number of factors, including how likely they are to survive 1-5 years post infection. Many of our younger citizens who are going out and becoming infected would probably fair pretty well under those special triage criteria…but their elderly loved ones that they are bringing this virus home to probably would not.

That means individuals who score poorly under crisis care triaging won’t get access to a ventilator even if it was their only hope of survival, and might not even get a room. So even if you can’t donate to help others right now, you can still do something amazing for your loved ones, the community, and our local healthcare providers. Mask up- wherever you are going, whatever you are doing. Mask up.

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Some Things Are More Important

Posted on by Ariana
I don’t live in Tolleson, but Mayor Tovar: for putting the health and safety of your community first and removing a possible barrier for those without access to masks right now, you rock!

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.

Tony being carried by Andy early this April during a community safety walk, photo by Ariana

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.

Tony this morning. At 8 years old, he’s less than 4 inches away from being as tall as Emily. All photos by Ariana

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.

Tony, doing community safety late March 2020. Photo by Ariana.

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

Ariana's Posts

Not A Privilege

Posted on by Ariana

I am going to start off by posting some screen shots that I am going to ask each of you to bear patiently with me and read. They provide some context for my remarks this week.

For me, this is something I believe should transcend politics. I am sure it is already evident to anybody reading our family’s blog over the past three months, but we support the wearing of masks to limit the risk of transmitting COVID. I think that in addition to requiring them in public spaces, all therapists or professionals working with others in their home should be wearing them also. This is one of the best things any of us can do to protect those we work with right now (plus staying home if you develop any symptom of illness).

Viruses do not discriminate. They do not care who you are, they do not care who you love or trust, they do not care who loves or trusts you. Avoiding certain people based on where they work or play won’t protect you, and assuming others are safe because they look healthy won’t either. Viruses truly are “equal opportunity” pathogens, though we know with this particular virus not everyone will get seriously sick. And perhaps that is why some do not worry as much, and local cases are very much on the rise. Perhaps an individual personally may not get very sick, but someone they know, love, or work with may not survive an infection from this virus.

And yet, that really isn’t my only point. I am touching further on this because now that many communities in our state will be mandating masks, I fear that in these Arizona communities we will start to see more people trying to claim disabilities to dodge this requirement. This has been a topic in some spaces on-line before, and perhaps some of you have seen this type of advice too when it began to circulate.

I am going to cite an article written by an attorney, Michael Wong, writing for JD Supra:

“With regard to masks, generally the ADA prohibits places of public accommodation having restrictions that would limit access to an individual with a disability. However, the ADA does allow restrictions when an individual would pose a direct threat to the health or safety of others.

As of March 2020, the EEOC has declared that the COVID-19 pandemic meets the direct threat standard, based on guidance from the CDC and public health authorities regarding the risk of community spread and institution of restrictions. IMPORTANT– This standard may change and so businesses must stay up-to-date.

Since the COVID-19 pandemic is currently considered a direct threat by the EEOC, a business would likely be on solid ground to require customers to wear face masks or covering when entering into their premises.”

So, anybody trying to do this doesn’t really have the law behind them based on the provisions of the ADA. But above that, I haven’t encountered anybody who looks at my son and wishes they too could experience his challenges and limitations. In fact, many people in our society look down on individuals like Tony whose disabilities come with more extensive behavioral challenges and functional limitations. Some people even see him and those like him as being “less than” in every way.

And now, people who most likely would never want to have any of the conditions they are claiming exempt them from mask wearing are trying to get out of these mandated health measures aimed at protecting more vulnerable people from their germs- should they be contagious and not symptomatic. Which, according to the CDC, is the case for at least 35% of infected individuals.

We traditionally, as Americans, have enacted laws to protect others from things other individuals might desire to do that would cause harm. I see the mask requirements as being no different.

Except, perhaps, that claiming a disability isn’t a privilege someone can put on and discard like a shield from something found to be unpleasant. Having these conditions and valiantly striving to find a place within a society that often relegates disabled individuals to a dramatically lower status deserves a badge of honor, but has sadly earned mainly some legal protections for those who qualify through actually having these diagnoses.

I wouldn’t dream of trying to take Tony any place requiring a mask right now and use the ADA as an excuse to get him in without one. Being Tony probably has been far harder than even I could imagine, and as his mom, I have had a front row seat to every single one of his challenges. A front row seat though, isn’t the same as actually being the one to experience everything on the inside. Because of his tactile defensiveness and the severity of his sensory differences, he’s not capable of wearing a mask for more than 30 seconds right now. But I respect his safety, I respect the safety of everyone around us, and I can find ways to meet or family’s needs without taking him anywhere public right now. And other differently-abled individuals and their loved ones probably can also.

As each of you go out in our community in the following weeks, I would ask that you be my voice and with kindness and gentleness educate others about these matters who may be trying to avoid mask wearing by claiming protection with the ADA for a nonexistent condition.

Ariana's Posts

Troubleshooting Telehealth Therapy

Posted on by Ariana
We start telehealth practice sessions with Casandra saying “hi.” All photos & screenshots by Ariana.

I had the pleasure of catching up a bit with Gena on the phone yesterday while Emily did some therapy work with Tony. I enjoy our conversations so much I barely registered that we had been talking for nearly 45 minutes before I had to end the call to participate in an OT telehealth session. She asked what those were like, and the truth is that they are often not easy.

Our son has significant problems with motor planning and it takes him a long time to learn how to imitate certain movements, and hands-on support is often required over a period of time for each new learning task we are undertaking. He also recognizes that a therapist who is on the computer is not anywhere near him, and is therefore unable to assist in (or enforce the need for compliance on) any requested attempts themselves. For some of our son’s therapies, my assistance has long been required in addition to the support of a physically present therapist.

Tony said “hi” back, and he’s starting to push the “I have been better” button in this picture.

Some telehealth sessions have consisted mostly of melt downs and frequent attempts to prematurely close the computer session. I could elaborate more, but I will just wrap this up by tying a neat little bow with the following statement: telehealth sessions usually require much higher levels of parental support, and are often more difficult and less productive than in-person sessions for Tony. I want to make sure I am very clear in saying with this that I am still incredibly lucky, because we are all healthy and together as a family.

Right now, we have more than 113,000 deaths in our country from COVID, and I don’t see a guaranteed end in sight to that any time soon. My heart continues to mourn with those who have lost so much through all of this. Locally, unfortunately, our numbers continue to rise…and in fact, Arizona has been in the national news for this, with the Chief Clinical Officer for the largest hospital network in the valley recently having warned the public that their network is nearing maximum capacity with filled ICU beds. Some telehealth sessions may be necessary for many months (if not longer) because of the ongoing pandemic, so we have introduced a new program during Tony’s ABA hours with Casandra to try and help improve his tolerance and cooperation with these types of sessions.

What we are doing is brief, taking maybe five minutes of each session. Casandra will go and sit on the stairs, just out of sight. Tony and I will sit in the living room logged into a video conferencing app with her. We practice saying hi, and doing three different tasks, such as labeling characters or physical imitation. If Tony doesn’t follow through with the task Casandra has requested, she comes down the stairs and prompts or assists him face-to-face.

Above, Tony is labeling characters on his AAC device. In the second picture, he is using a backup copy of his speech program that is on the iPad mini we purchased for his educational apps (photo taken after his original AAC device died). For communication purposes, it is recommended that Tony have a separate AAC device so that he can talk about what is happening in his educational apps during use, so this isn’t optimal, but it’s allowing him to communicate while we are still waiting on the ordered device. In the above picture, he still insisted on having the dead speech device out with him for a few days because he was so used to having it around.

In these pictures, Casandra is asking him to imitate a physical motion. What we have noticed is that his cooperation is much higher if he knows we’ll be able to go for a walk afterwards. Some nights it’s too hot for us to safely walk, and on those evenings he’s often less inclined to do what is asked of him in these practice sessions. Once we noticed this, we varied when we were doing the telehealth practice sessions so that they didn’t always immediately fall in front of a walk so that we would more naturally simulate typical existing motivations (or lack thereof) during telehealth therapy.

He also will sometimes run up to the stairs to look at her, or start labeling items he sees in her hands as she’s walking up the stairs so that he can try to get part of the tasks over with before the video aspect begins. To prevent this from happening, Casandra has started taking her personal phone with her and pulling up pictures of characters to show him once the practice session has begun.

You will notice that we are all still wearing masks over here. That really isn’t going to change until there is a vaccine or an effective treatment option for COVID. Recent studies and at least one well-publicized case of COVID exposure to 140 individuals within the US have demonstrated that masks work to prevent and reduce transmission. Nobody here loves them, but everyone but Tony will continue to wear one while we are all together in the same space. This is an important part of how we are all able to work together while reducing risks for transmission should someone be asymptomatic and contagious. And, at least in Maricopa County, plans are in the works for a public campaign encouraging mask use.

Even for therapists who feel comfortable working inside our home, there may continue to be periods of time where support will need to be provided via telehealth sessions as we all try to protect one another during periods of possible illness over the course of this pandemic. During yesterday’s OT telehealth session, I still needed to prompt all of the compliance and provide all of the physical support.

But, I can see that Tony is slowly becoming more tolerant of this method of delivery for therapy supports. Perhaps as we go along with Casandra’s practice sessions, we may expand them to add an extra five minutes and more variety to the types of tasks attempted. Her ability to be present and prompt the follow through is key to helping him generalize cooperation to someone other than me during these sessions. And without building the generalization for a need to cooperate under these conditions, telehealth will never be quite as effective as in-person sessions for Tony or any other kiddo who struggles with this method of therapeutic delivery.

Ariana's Posts

Gratitude & Some Reading

Posted on by Ariana
Casandra patiently waiting for Tony to be ready to describe things, May 8, 2020. Photo by Ariana

Casandra

Casandra, when you first came to meet our family more than a year ago, I was scared to hope that this was a job you would be interested in taking. I laced up emotional armor to shield my heart from disappointment, and instead found blessings and more reasons than I could ever list to be grateful. Thank you for choosing time and again to work with Tony. He soaked in the depths of your patience and it is clear to me that our son loves you for that. I am so grateful that you always cheer him on, and genuinely believe in his ability to do more and continue to grow.

Tony and I are both grateful for your positive attitude and willingness to help out even when he wants to still do community safety in the pouring rain. I will never forget how everything was completely soaked but my spirits because of how cheerfully you handled that situation. And on a personal note, I really appreciate that you help me practice my Spanish speaking skills with you while we are discussing some of Tony’s therapy programs without judgment when I get something wrong.

Thank you, Casandra. For everything you have done to continue to help our little man build a better future for himself, there will never be words with enough grace to capture everything that is in my heart. Tony and I both thank you.

Some Reading & Viewing To Consider

For the past couple of months I personally have been spread very thin and my stress level has been very high. I have not completed the reading of larger works of any kind, so I am just presenting a couple brief “food for thought” items this month. You can click on the titles for links.

“Are clear masks the way to clearer communication? The deaf community isn’t so sure,” by Abby Haglage

I think this article has many important points for anyone considered “typically functioning” to internalize. I think there is validity to the concerns presented therein about how the needs of those believed to be disabled usually aren’t considered in pandemic planning, and indeed some standard healthcare practices in general.

“The Surprising Science of Happiness,” Ted Talk by Dan Gilbert

This is something Andy shared with me, and having watched it with him, I think it is worth passing on and sharing with each of you given everything that is going on in our communities right now. I think the data he presents may be surprising to some, and I believe his point about our ability to synthesize happiness is worth considering. But right now, I am going to cut this short and end here so that I can go practice creating some happiness for myself on the ukulele, and I hope each of you are able to take some moments to invest in your own mental and physical well-being… in whatever way feels restorative and meaningful to you.