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“Behind the Mask I Wear…”

Posted on by Ariana
And no, I’m not talking about this kind of mask…Selfies by Ariana

Perhaps some of you may not have thought about it, but some of you may have given your imaginations brief rein to fill in the largely unwritten subtext of last week’s post. What does it feel like to stay awake entirely for one night and for parts of multiple nights after that holding and gently keeping a kiddo with a rare form of gigantism- a kiddo that needed five people to hold him down in the ER to get the bandage on in the first place- from ripping off said bandage before the wound can heal enough to do without it? I will tell you this much, my husband was working nights at a local hospital and going to graduate school during the day at the time, so it was by and large all me. And I have an entire catalog of these kinds of moments, but I’ll never really fill in those blanks for you…those memories are locked away, “behind the mask I wear.”

While this is the time of year so many of us focus on wearing a mask, I think perhaps, really, we are all more often holding a less noticeable one up between us and the world. There is an essay written by Elsa Sjunneson in Disability Visibility that I absolutely love titled “How to Make a Paper Crane from Rage.” I think some parents of disabled loved ones might also relate to her writings, because it often feels like we are being told by the community around us that there is only so much of the feelings about our experiences that can be palatable and thus shown. So as Elsa said, “I have learned to suppress, to fold, to disappear. When I fold down…I fold down myself. I make myself smaller, prettier, easier to consume.” And I tuck it all away, “behind the mask I wear.”

For me, there’s no escaping that even after all of that folding, I still fantasize about what life was like before the pandemic. Almost everything seems harder right now. And the demands of providing for the safest possible working environment for all of us are intense. Sometimes it’s like all I can hear in my head is Axl’s voice crooning “Don’t you cry tonight…”except I’m singing the entire song to another part of myself. Some nights I loose the battle to keep my cheeks dry, and the past seven years have been the weepiest years of my life by far. Living through these experiences, it’s hard not to feel broken sometimes, no matter what kind of mask you put on over current and past events.

The isolation. The sense of abandonment. The fears. The struggles. And there’s a whole other part of me that is equally devoted to everything for our daughter, though out of respect for her wishes I only talk about things she’s given me permission to on our blog. But I know exactly where all of that is hidden, somewhere “behind the mask I wear.”

Sometimes I have to turn away from it all and instead of, for example, shaking my fist at Vans this week for discontinuing the gluten-free chocolate chip bars that Tony has been loving and counting on as a near daily staple for years, I have to focus on something more positive. That, for example, our little man actually tried and ate the first two types of bars I got to try with him as possible replacements. (Take that, Vans!) This might seem like a given to many parents, but with a kiddo who is level 3 Autistic, or has an FASD, a complete lack of flexibility with these types of things is more often then not what parents and caregivers encounter. Avoiding a hunger strike is actually a major thing when beloved items are discontinued for our families. And as small a thing at it might seem to some, knowing how big a deal it would be for Tony to have his Vans bars disappear definitely had me in tears when I found out, but I’d rather magnify that he’s willing to try other things at this time.

Or that we had a successful return to public therapy this past week. That someone who lives near us stopped to offer us a ride home when stray dogs were circling Tony during community safety because she noticed that he was frightened- so rare an offer of that kind of help. That a brand I love accidentally sent me a second of the same eye shadow palette I ordered and told me to keep it when I contacted them about it.

I need to create as much as I need to serve. Both are integral to any ability I have to find joy and meaning in life. My time right now is so restricted that my ability to do something brief, different, and colorful every day on my face has been a lifesaver of emotional nourishment. If one must wear a mask, at least let it be one that brings them some manner of satisfaction. And, I loved being able to pass the kindness and love on by sharing my good fortune and the second palette with someone who didn’t have it.

We could say that these were Halloween looks. Sure. But, in all honesty, I’d wear this much purple and/or green any day of the year.

When I was in fourth grade, I told my mom that I wanted to start wearing makeup. I was given a rather lengthy lecture on the evils of makeup and hair spray in general. She wasn’t religious, she just thought that anything related to altering a person’s appearance was completely frivolous and she was rather disappointed that I had any interest in such things- though she did allow me to start using both makeup and hairspray when I wanted to.

You know, I didn’t care then and I don’t care now what people think about what I want to paint on my face. Life is short. Perhaps such things could be seen as shallow, but I agree with Sam Berns when he said in his TEDx talk that he tries not to focus on what he can’t do, but rather what he can. So if I must disappear “behind the mask I wear,” creating ones I love has helped me hold myself together when nothing else was.

I have included a link to Sam’s TEDx below, as well as another talk on happiness that I really enjoyed.

“My Philosophy for a happy life,” by Sam Berns

“Happiness is all in your mind,” by Gen Kelsang Nyema

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When a Small Cut Becomes a Scary Scene

Posted on by Ariana

Screenshot, Email sent to our habilitation team. Email subscribers may have to zoom in a bit to read the text, and I will also include the most pertinent bits quoted below in case that doesn’t work out well enough for everyone.

“…last night while I was trimming Tony’s fingernails, he jerked and I cut his finger…took off the tip of it, actually. We were unable to control the bleeding at home because he was fighting so bad against it, it was just me and Hannah because Andy was at work, and ended up having to call 911. Our kitchen floor looked like a crime scene, to be honest. We have to take him back for a bandage change today, and we can’t leave him unattended in any way even when he’s sleeping until this bandage comes because of the risk of him ripping it off. Because the type of wound it was, a small piece of skin and tissue removed, and they opted not to cauterize it but are going with compression bandages for now hoping it will close up on it’s own…I don’t feel comfortable cleaning while Tony sleeps, which he’s honestly not doing much of because the bandage freaks him out that bad- I spent most of last night holding him.”

November 10, 2016. The sky had already darkened. I was wearing my Chief Bogo shirt, which was a little too big for me, and a black skirt baggy enough to have the most tenuous of hip grip. I was trimming Tony’s finger nails, which had to be done one small snip at a time with generous rests in between because he found the sensation so fearful and aversive. People always would recommend to do that in his sleep, but our little man could not sleep through a whisper much less such a snip at that time, and the one attempt I made to try that piece of advise was followed by many nights of him distrustfully refusing to sleep. I personally recommend each parent know their child, what they will tolerate and what won’t violate their trust.

So my practice was to always work on finding ways to help ease Tony’s fears and improve his tolerance of certain sensory stimuli. On this night, I was using my own personal nail trimmers because I couldn’t find the baby trimmers I usually used for him. The trimming edges were bigger and louder. He jerked, and it was such a tiny cut really…a tiny cut in the wrong place.

To me, it felt like blood was everywhere. My kiddo couldn’t tolerate the feeling of bandages on his skin in any way- I tried to get coban on the cut, but he fought frantically. I recognized there was no way I would be able to get the bleeding stopped on my own, so I called 911. We are blessed to live very close to a firehouse, and our local’s finest were at our home within moments.

One of them commented on the amount of blood. A couple of them helped bandage Tony while I held him on my lap on our yoga ball, tears raining down my face as we both cried. One of their crew started mopping the blood up off of our kitchen floor, and truly, this was a kindness above and beyond what I would have expected them to do. One of the firefighters noted that if I drove Tony in to the ER, he’d have the bandage ripped off within seconds and he’d be bleeding in the backseat unchecked all the way there. He recommended an ambulance ride with me holding him.

When we arrived about 15 minutes later at the ER, the EMT asked if Tony would walk in. I told him no, I didn’t think this was a good idea as I raised our little man up onto my shoulders. This gentleman looked thoughtfully back at me as we were walking in, like he was trying to figure out if I was completely crazy or if this kiddo of ours really was going to go berserk in ways he wouldn’t have thought possible. He didn’t know how intensely our son could react to medical environments.

Screenshot of an e-mail about this incident sent to Tony’s first NMT therapist, Julie.

“…so we have to go in this morning to get the compression bandage changed. It took 5 of us to hold him down in the ER just to get the one we’ve got on him, so they’ve recommended that we take him to his Dr’s office this morning to change it.”

Once the original ER bandage was taken off at his doctor’s office, I could see why he couldn’t sleep the night before. I was one of the five helping to hold him in the ER, and at that time, I was carrying a fair bit of muscle on my frame. We needed that many people, he was resisting with that much force. The ER team had put the bandage on very tight to keep him from pulling it off…and I am sure it is very difficult to bandage a thrashing kiddo twice the side of what would be expected for his age. I personally felt like the firefighter’s recommendation for our son to be sedated was a great idea, but obviously a decision was made by the ER medical team to handle things differently.

The original compression bandage they placed was too tight, and it had done significant damage to his skin. Our doctor applied the fresh bandage much looser, but Tony was in so much pain from the damage done by the first bandage that we needed six people to hold him down for the bandage change visit. The tissue damage caused by the initial bandaging took longer to heal than the cut that led us to the ER in the first place. My heart was shattered because, in part, a slip of my hand had helped set the stage for this very scary set of scenes.

Tony in his car seat on the day these pictures were taken for a text to a friend, damage from the bandage shown, which included sizeable blisters and burn-like lesions on multiple fingers.

In the four years that have followed, our little man has only gotten bigger and stronger. The importance of why we do what we do with medical desensitization work is geared at making necessary medical interventions safer for everyone and less scary for him.

A Note About an Anytime Trick for Problems with Treats

Because October is a time where many kiddos get extra candies, for those parents with loved ones who may have similar challenges, I’m going to give you a suggestion for a trick to try for calmly managing a treat or two (such as skittles) that may have been shoved up the nose. Our little man has managed skittles up both his nostrils at the same time, and just yesterday he shoved a yellow one up the right side. This only works of course if your loved one likes showers or baths (and Tony does these days), but try putting them in the shower and letting them play for a while, making a game of splashing small amounts of water on them. The humidity will start to dissolve the skittles, which in turn starts their slimy slide out of the nose. Often this is much easier and less stressful to manage for me than a trip somewhere to have the candies extracted.

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Our Nasal Flu Vaccination Prep

Posted on by Ariana
Tony waiting in the exam room for his doctor’s medical assistant to get his nasal flu vaccine, photos by Ariana

This was another week where I wanted to rip up the rails of a planned course and ride a different topic across the drought stricken plains into an ashen, hazy sunset. After all, those of us who may be vulnerable to more serious illness in this pandemic and aren’t in the incredibly privileged position of having access to dedicated, personalized medical care with treatments unavailable to most people on the planet may struggle to keep the changes and limitations that have been adopted by necessity from “dominating” our lives.

However, I feel like the demands of this time have wagged their fingers at me and told me to reign my saltier self in and follow the path of my planned topic. Many health experts have opined and cautioned that obtaining a flu vaccine this fall is very important, as a person can catch both the flu and COVID at the same time, which may lead to a higher likelihood of a poor outcome. And, high flu cases combined with high COVID cases would stretch our community’s health care resources far too thin.

I am not going to wade into the controversial waters of vaccination and those who believe it causes Autism. I leave others to make their own decisions about this, and I will make mine. This information is given here for those who may have a kiddo with similar needs or struggles and likewise are planning on obtaining a flu vaccine for their loved one.

Tony hasn’t been any place public (other than the sidewalks of our neighborhood) since the first diagnosed cases of COVID hit our community back in March. I knew that taking him in to his doctor’s office was going to be a rougher entry to resuming any sort of outings, and that having to use a vaccine requiring syringe administration would be the most likely to traumatize him and lead to higher resistance to going anywhere.

So, I called his Primary Care Physician’s office and asked if they would be offering the nasal flu vaccine this year. The receptionist wasn’t sure, so she left a message for the nurse. My first preference was definitely to take him to an office that he would recognize and be familiar with, so I started with them rather than a pharmacy. The nurse called me back and we talked about my concerns for Tony and why I would be seeking a nasal flu vaccine, and she said she would talk to the medical providers and call me back. I received a call back a short time later stating that the providers had decided to offer some nasal flu vaccines, so I scheduled an appointment for a few weeks after that to give time for preparing Tony.

The ideas I describe here are what I came up with to help prepare Tony for the smoothest vaccination experience possible, and I offer them for those who may need them. They may or may not help for your loved one, but they could be a good place to start.

As discussed in previous posts, we worked on mask tolerance, and this was important here to get him to a time frame sufficient to allow him to walk through the lobby and back to the exam room masked. In addition to that, I began talking to him about what would happen and showing him pictures found on google of other kiddos being administered a nasal flu vaccine. The one I used most frequently was off a male kiddo with a skin tone similar to our little man’s. I paired this with gently inserting a nasal spray in each nostril.

These are the sprays I used, other brands I am sure are just fine.

For the first week, I just inserted the spray in and pulled it out very quickly while talking about the vaccine and why we were getting it for him. After the first week, I began telling him that in a couple of days we would practice doing a spray in each nostril, similar to what would happen with the vaccination. I also asked Andy to buy a separate nasal spray for me to use so that I could show him what the spray would look like on me, and so that he could see it was something I was willing to do to myself and not just something unpleasant I was asking only him to tolerate. Two separate sprayers is important to avoid spreading germs unknowingly between the kiddo and whoever is doing the therapy work.

Tony really didn’t like the sensation of having anything sprayed in his nose, so I kept it to just one practice with an actual spritz in the nostrils every other day. Sometimes he would be scared I would spray without warning him, so to help him feel more comfortable in those moments I would hand him the nasal spray and let him insert in each side of his own nose, I would next let him take my nasal spray and insert it in each side of my nose, and then I would ask to be able to hold his nasal spray and insert the nozzle into his nostrils. We practiced this until he could tolerate having the nasal spray in each nostril for five seconds.

The day of the vaccination we called the receptionist when we arrived at their office. We let them know we would be waiting in the car until they were ready for us, and they told us to look for the medical assistant at the door. Once she came out, we walked Tony to the building with his tablet and put the mask on when we were about 20 feet from the front door. I put on Tony’s mask timer and we walked back to the exam room, where Tony took off his mask. We waited for the medical assistant to go get the nasal vaccine. Emily and I each gently held one of his hands while the MA administered it because he was still scared, and then we all clapped for him and I handed him some skittles (one of his favorite candies) the moment she was done.

The MA asked Tony if he would like to wipe his nose, and he gave me the stink eye as I handed him the tissue. He wiped, and threw away the tissue while the MA complimented me on my eye shadow (many thanks for that, it totally made my day BTW). We put the mask back on Tony, walked through the halls to the lobby and out to our car. I savored a brief feeling of elation flavored by knowing that the preparation contributed to a successful vaccination trip for our son.

The nasal flu vaccine does contain a live virus, and our little man did indeed develop a fever from it. However, this was a much milder episode for him than the flu was this past January, and I feel like it was the right choice to make for him and for our family.

And, because I can’t completely keep from wandering off course, I am going to leave you with some screenshots and a link below those to a recent editorial by the New England Journal of Medicine. I hope that each of us will do what we can on a personal level to limit the risk of spreading this virus to others. More than 210,000 Americans have already died, and I don’t need a panel of experts to tell me that each and every one of those lives was precious and irreplaceable to those who loved them.

“Dying in a Leadership Vacuum,” The New England Journal of Medicine.

Ariana's Posts

Gratitude & Some Reading

Posted on by Ariana

Bits of Gratitude

When Bob passed away this past summer, I scrapped some planned posts to take a couple of weeks off, and one of those writings was going to be focused on finding gratitude for the little things even when hard things are happening. I am going to condense some of those moments here so that they don’t get left behind:

Arlene:

To the kind sister-in-law I have not yet met in person, my heart was touched that you not only cared enough to make Hannah and I water tumblers, but that you cared enough to learn about and customize them with things that we are interested in. And it was very sweet of you to send an eye shadow palette with it- both were very thoughtful touches that brought more sparkle to my days and my heart. Thank you <3

My Andy:

My love, I can’t tell you enough how much it meant to me that you remembered a story told so long ago about a trip to Mexico with my grandparents and great Aunts and Uncles, where I learned that I just plain liked Mexican produced coke in a glass bottle better. For seeing this in a store this past summer and bringing it home, for noticing ways to help me feel loved and special in the little things, you have my gratitude and so much more. <3

An Unnamed Neighbor We’ve Never Met Before:

For not just coming up to check on us when Tony was having a melt down during community safety a few months ago, but asking if the ice cream sandwiches you had in your house might help, you have my thanks. So many people stop and stare, a very few ask if we are OK, but hardly anyone asks if we need help. Thank you. <3

Exmo Lex:

*Please note, if you are a member of the church I resigned membership from last year, and would prefer not to read a note of gratitude to someone who publicly identifies as an apostate, you have my blessing to honor your own comfort level and skip this upcoming paragraph. While I love and will continue to respect each of you and your own beliefs, I feel very passionately about what I did and I am confident that it was the right choice for me personally, so it should be understandable that I would have no problem communicating with other people who also left.

Lex, when I wrote you that e-mail several months ago, I didn’t expect you to write me back. Thank you for reading my hurt about what was happening at the time and giving me a brief moment of understanding for what I was going through. I know we have not written since, and I wouldn’t expect you to, but it was a short but sufficient life-line of compassion that I have held on to as I slog through pandemic conditions that make it even harder to meet more people who are, as you put it, in a similar position. Thank you for caring enough to take the time to respond <3

Some Reading To Consider:

“Workers With Disabilities Can Earn Just $3.34 An Hour. Agency Says Law Needs Change,” by Alina Selyukh, NPR

My thoughts on this article are pretty brief. The article discusses a decades old law making it legal in the United States to pay disabled employees an amount lower than minimum wage. I think the issues being discussed in this article are complicated, because, as some of those interviewed point out, some individuals with significant impairments aren’t able to find employment in other venues. However, I feel like this is something that in far too many cases might amount to taking advantage of others, and I really think each of us should carefully examine our hearts and ask what we would want if we were in that position ourselves. A living wage does a lot to contribute to a life of meaning and dignity for everyone, and if someone is capable of contributing work that provides value to others, their disability shouldn’t be used as an excuse to devalue their efforts.

“What Makes AMZDiscover the Best Reviewer ‘Mining’ Tool for Amazon Sellers?”, by AMZDiscover

So, just a brief history lesson for those of you new to this blog. I used to shop almost exclusively at Amazon when Tony was younger because of the severity of his symptoms, and my reviews of our family’s purchases under our profile at one point landed me in their top 100 reviewers. Nearly three years ago, Amazon sent me an e-mail saying that they had found me guilty of writing reviews for compensation, and I actually was not doing that. Off topic? Sometimes yes. Oversharing? Sometimes yes. Rambling Reviews of Epic Length? Sometimes yes. Compensated? Definitely Not. Really I can’t imagine anybody paying for some of that crazy, TBH. I had strong feelings about the way the situation was handled and I stopped shopping there (they did not take away my review privileges, I had other concerns). Two weeks after my last purchase I put up one of my private e-mail addresses on our family’s profile (we never had one up there previously) so that other customers could contact me with questions if needed. This is an e-mail address that was never any place public before or since. One week later, I took it down because all I was getting were vendor requests for reviews, many of them detailing ways to get reimbursed and still show up as a “Verified Reviewer.” And, the occasional curiosity seeker who wanted to know why I wrote all of those reviews. Let’s not forget those. I’ve been getting these types of e-mails ever since, to the tune of several hundred.

This week I started getting requests citing AMZDiscover as the place my e-mail address was obtained from (two in as many days). I of course sent AMZDiscover an e-mail asking that my e-mail address be removed from their website (which has still not been responded to), but then I read this blog post from their organization and all I can say is this:

AMZDiscover, I am not you or your customers’ “gold mine.” Other families who have no choice but to heavily utilize on-line shopping are not your “gold mine.” Perhaps it is naïve, but I personally would prefer to be seen as a person of value outside of what I could spend and not a potential cash cow. While I was pretty upset about the way Team Amazon handled our particular situation, the truth is, it was an honor to help other customers there and if Amazon had handled things just a bit differently with me, I’d probably still be shopping there and I have no desire to hurt any of their employees, which is why I’ve never put anyone involved with this situation publicly on blast by name. All of that money that I spent was earned by the sweat and work of my husband and it went on a credit card…a credit card that we pay on, BTW. I was once in a class where someone called me out for my Amazon spending. A lot of what I bought were therapy supplies, and you know what? I felt then and I feel now like what I was buying was hope. A chance for our son and our family to see him have a better future than he otherwise could. I was doing most of his therapy work at the time, those supplies were for either his other therapists to use in home or for me and what I did with him.

For my readers, I know at least one other person who reads my blog that has received e-mails from people wanting reviews. Each of you should be aware companies like these are out there and potentially selling your info, seeing you as a potential golden goose of sorts. For me, this company’s blog post was just a rotten egg.

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A Little Community Safety Creativity

Posted on by Ariana
Tony & Emily, all photos by Ariana

This summer has been serving up extra helpings of heat that just seem to keep coming. My patience has long past its fill of this weather, but these extra toasty temps just keep stretching up and on far higher than I want every time I look at the forecast. I have for many months felt a sense of increasingly concerned urgency to do everything we can to mitigate the damage to Tony’s progress, but so much of what is happening with our COVID community spread and the heat is really quite outside of my ability to control- and there is only so much we can do inside our home to help him gain the skills necessary to safely function outside of it. Though, we certainly have been doing what we can in-home, the potential cumulative impact of decreased community safety in combination with a necessary pandemic related pause to public therapy to our ability to successfully help Tony practice public safety skills has at many points left me emotionally flayed by fears.

As I was voicing some of these concerns to Emily, she came up with a couple of really great ideas to allow us some additional opportunities to practice certain skills, and a few weeks ago (once the temperatures dropped from “blazing inferno” to a slightly more moderate roast) we started practicing some additional community safety creativity. The base idea I am going to be talking about today involves driving to different areas in our neighborhood, getting out of the car, walking a short distance of one or two blocks, and returning to our vehicle to head off to another street.

The hotter, the more shade we look for…

There are a couple of important considerations in picking the streets we are using. We cannot use streets that are along our typical walking routes for community safety because Tony has lost some willingness to be flexible because of the pace of ongoing pandemic related changes (emotionally he just needs some routines he can have more control of). Using roadways on our usual walking routes would increase the likelihood that he would want to finish the “normal” walk from that point on and blow up about being directed back to the car, which would be less safe to work through in the main heat of the day. The other safety element I look to satisfy is picking areas that are better shaded for as much of the walking distance as possible by trees in case our little man gets upset about something and tries to sit on the ground.

Sometimes he likes to get his video on a preferred scene before we walk…

We spent a couple of weeks talking to Tony about what we would be doing before we began so that he would be prepared. The first day we tried this, his breathing was faster and he was a bit on edge because the newness of this process was making him anxious, but he only lost the impulse control battle with avoiding eloping once (that’s what his frequent attempts to run somewhere he shouldn’t are called in therapy terms). By the second day he was much more relaxed about it, though he still refuses to get out of the car safety harness for walking such a short distance. We are allowing him to keep a tablet with one of his videos playing while we walk, and we are picking different streets or sides of streets every day to promote flexibility and prevent the development of a rigid expectation for which streets we use and in what order.

I make sure to take water and a snack for him, and these are available to him as we drive from one street to the next. Right now, because of the heat, we are only picking three streets and the walking distance is kept to the one block range. We have also begun pairing practice with mask wearing for him on these outings. Once I began using the timer, he has been able to hit his goal time on nearly every single opportunity during these outings, so I walk in front of him (with me going backwards) so that he can see the timer. I generally don’t use the timer if Tony and I are doing a full community safety walk in the early hours of the morning, because we are just focusing then on putting the mask on for the time it takes us to walk past others who are out for their morning jog, etc. However, at this time he definitely is less willing to keep the mask on for anything above a few seconds unless he can actually see a timer that indicates when he can end the mask wearing.

Sometimes he likes to hold his tablet up to drown out the noise of other things, like leaf blowers, with sounds he finds less scary.

Today we advanced to a 57 seconds expectation per trial on the mask wearing for our little man, and once we get all the way up to a minute with 100% compliance for all attempts, we will resume public therapy at non-preferred locations. That will give us just enough time to walk in and walk out. We will need to pick non-preferred locations because otherwise Tony may want to default to his typical routines for how long we stayed or which aisles we walked through, and he can’t tolerate a mask long enough yet for that to be safe. I did get a new phone case with a clip so that I could wear my phone (thus keeping the timer visible and my hands free to intervene if needed), which will help facilitate our upcoming public outings.

The pandemic has dealt us some significant therapy set-backs with what we can do for areas that are absolutely essential to helping Tony develop the necessary skills to participate in community life outside of our home, that is undoubtedly true. But with a little bit of creativity from each of us, we are doing our best to come up with workarounds that will allow us to still help our sweet son keep moving forward.

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Mask Tolerance and Tactile Defensiveness

Posted on by Ariana
Tony, waiting for Amara to arrive and practicing mask wearing, Sept 17, 2020. Photos by Ariana

We are working on so many therapy targets right now I honestly struggled a bit to decide which one to lead in with this week. I decided that what made the most inherent sense to discuss is the work we are doing towards helping Tony gain increased tolerance for wearing a mask, as our ability to return to public therapy work hinges in part on his ability to correctly wear one for any period of time.

And ideally, for safety reasons, I would love for our son to be able to wear a mask for the entirety of each and every one of his in-home therapy sessions, but we are nowhere near achieving that level of acceptance at this time. I don’t believe “down playing” health and safety risks is ever the correct choice when interacting with loved ones, much less for a person having any sort of responsibility to lead and protect. When hurricanes come, concerned leaders don’t tell citizens in the storm’s path that it will all just “blow over” and they’ll be just fine. No, typically we tell people in the storm’s path to evacuate or take whatever other steps are necessary to protect themselves. I recall a rather blunt statement being issued over a recent hurricane headed towards one of our coastal states directing anyone who chose not to evacuate to write their names on a piece of paper and put it in their pockets so that rescuers could identify their bodies.

And I never once considered telling our daughter as she headed into her teen years that experimenting with certain drugs was likely to end well for her. Nope. I told her exactly what happened to my brother on his path of addiction prior to his death, including the part about his teeth rotting out from freebasing. No, a leader of any kind who genuinely cares about the lives and safety of those that are served doesn’t sugar coat dangers or play things down.

As a parent, I am not going to downplay what I see happening with this pandemic for either of my children. My opinion very clearly is that Dr. Redfield was correct in his recent statement that a mask is likely to be a more effective protection for our citizens than any initial vaccine, which likely won’t guarantee immunity. And the companies producing the current vaccine candidates (none of which have fully established meeting safety yet via clinical trials) are pretty clear distribution for the entire public would be several months to nearly a year from now. Certain manufacturing logistics can’t be gotten around with wishful thinking or assurances meant to calm rather than accurately inform. Until all of those pieces fall into place, our communities must adopt a higher rate of wearing masks if we really want to slow down infections rates and deaths.

As I write this, nearly 200,000 Americans have already died from COVID. What we need more than political division is a national sense of mourning for those whose loved ones are lost, and to develop a unified desire to protect the lives of as many of our citizens as possible. Never for a second would I say to any person in our communities that our son’s continued progress in gaining public safety skills is more important than their lives, and so we have been at home focusing on building up as many skills as we can in other areas until he gains adequate mask tolerance.

We have, of course, explained to our little man why we are all wearing the masks and why he will need to as well when we resume work anywhere but our community sidewalks. However, a repeated explanation alone simply would never be enough to help him create the necessary acceptance or tolerance for the sensation of wearing a mask.

Our son has a history of pretty intense tactile defensiveness. What that means is that his skin nerves are overly sensitive. Gentle touches can feel much stronger and even more painful for him and he will try to avoid or push things away that are more uncomfortable. As a toddler, his reactions made it clear that he experienced certain sensations most people wouldn’t be bothered by as extremely painful. We have been doing years of sensory integration therapies with Tony to help him cope with the world around him, and what we are doing with the mask is based on desensitization that follows a painstaking and methodical process towards increasing tolerance.

The first step was just to put the mask on him and let him take it right off. We then began adding individual seconds to how long we were asking him to keep the mask on. Right now we have also added use of a timer so that he can see exactly how long he is expected to keep it on. This helps him to visualize the “end,” or in this case when he can take the mask off and still receive a reward. He usually likes to watch TV or a video on a tablet while we are working on mask tolerance because it helps distract him from whatever sensory discomforts he is experiencing. I have also done a bit of shopping so that I could find the softest 3 layer mask possible (our son does better with soft cloth textures), and the last set I purchased from an Etsy vendor seems to have pleased him the most.

We have begun pairing all of this with practice during certain outside activities in our community, and I will be discussing those more in an upcoming post. For right now, we’re at 47 seconds tolerance per trial with 100% of trial targets being successful in home. I vary the number of trials I run per session, anywhere from 3 to 10 depending on what his emotional regulation looks like on any given day. I stay aware of what his non-verbal cues are about this so that I can try to make sure we always end on a successful trial because I don’t want him to associate the ending of mask work for the day with an outburst or taking it off too soon.

Tomorrow, I will be advancing him to 50 seconds and we will continue to work from there. I understate nothing when I said this work is painstaking. Some children with sensory differences may be able to progress more quickly, some not even at this pace. But this is the basic backbone of one way to help a kiddo with tactile differences adjust to mask wearing. Masks may not be comfortable for any of us, but as I look at the people around me, I can’t imagine thinking the safety of any one of them wasn’t worth the effort.

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“Rumor Has It”

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J.N. and Emily helping Tony practice community safety skills, Dec. 6, 2019. Photos by Ariana

For several years now I have been hearing so many stories about habilitation therapy in Arizona. “Rumor has it,” some families of older kiddos who lost their habilitation (hab) therapists and couldn’t find a replacement quickly had their authorized hab hours taken away from them. Which then makes it much harder to find a replacement, because “rumor has it” that once those hab hours are gone for some families, they might not be coming back even if a therapist is found who feels comfortable taking the job.

We are in a situation where for the first time in a couple of years, all of Tony’s authorized hab hours aren’t being used by a therapist. Shortly after the start of the pandemic, the Division of Developmental Disabilities (DDD) made a temporary policy change allowing parents to become temporary paid hab providers for their own children, so that is what I chose to do to utilize the remaining hours in case all of those rumors ended up being true for our family too.

The amount of hab hours our son is currently authorized for already doesn’t meet his full medical necessity needs for this type of therapy, so another reduction of these services certainly would not be in his best interest. The work done with hab this past year alone helped contribute to a doubling of his receptive language scores on his yearly assessments, and a trippling of his domestic living skills. What we do in hab has already made providing a lifetime of care to Tony cheaper…but we have a long, long way to go still and without the practice generalizing cooperation to others, we are less likely to be able to help get him to where we hope he could be.

“Rumor has it” though, that some other states allow the parents to be the paid hab provider for their children as part of their normal policy. I think Arizona should do that also, not because I want to be a permanently paid provider- we already know I am the person Tony will cooperate with the most for therapy tasks and what he really needs is ongoing expanded practice working with others. I personally will always prefer to hand this roll over to a hab therapist, but I know that finding an incredibly patient person who feels comfortable working with Tony during our current pandemic circumstances is going to likely require an act of God if not a fair bit of time. Turn over in these positions is often high though because usually hab therapists want to move on to higher paying positions as soon as possible.

Rather, I think providing the permanent option for parents to act as the paid provider would allow parents who are otherwise unable to find providers expanded access to the support of clinical supervision (which would allow for the best possible outcomes for these individuals) and it would allow DDD the opportunity to have more oversight in whether or not anything is being done to meet all of a kiddo’s needs. And the truth is, some people might not do the therapy work for their kiddo for free if a hab therapist can’t be found…but they just might if they were getting paid for it. And certainly, the Division of Developmental Disabilities could require as a condition that attempts to find a hab therapist be ongoing, and that the hours be turned over to such a therapist as soon as they are identified.

Being put in a position to provide years worth of necessary therapy services for your kiddo because hours have been taken away in the absence of an immediate replacement certainly might cause a person to feel like they are being taken advantage of. Officially and for the record, none of my schooling was in therapy, but I have had to do a lot of reading and taken a serious crash course from life on how to supply as much as I can in therapeutic supports because we have had times where we were without a particular service in one area or another for our little man. “Rumor has it” that one hour a week therapy types are easier to get back than hab, which often requires many paid hours a week. I know we were without a physical therapist for the past year until just two weeks ago, and that hour was taken away and recently was put back.

I actually prefer it when “Rumor Has It” is only a song to be heard, which can be listened to and loved or turned off and left behind if that is what a person chooses. There’s no leaving this behind. The best I can hope for is that if we remain unable to find someone who can fill Tony’s unused hab hours when DDD pulls the authorization for parents to be the temporary direct care worker is that all of those rumors I’ve been hearing over the years won’t be true. Because certainly his medical necessity needs for this type of therapy won’t have been reduced, and I will still be here, having to do the best I can to help him gain skills- with or without these needed supports.

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September Gratitude & Some Viewing

Posted on by Ariana
Tony’s new Nova Chat, new vocab in progress, photos by Ariana

To Miss J, Who has been Tony’s fabulous DDD Support Services Coordinator since the summer of 2018.

Our very first meeting, you listened to what I told you our son needed and did your best to make it happen. I know the approval of specific services is not in your hands, but I am extremely grateful that you have efficiently done everything you could to help our son access necessary services and equipment every time they were needed over the past two years. I appreciate that you have kept me informed every time you received word about newly available therapists on our side of town that could possibly be able to work in home with our little man, and I thank you for backing me up when I stated that something wasn’t what was best for him. You have my gratitude for arranging contact-less delivery by someone else of Tony’s new AAC device as it became available while you were going to be taking time off (so that receipt for him was not even further delayed). For everything that you have done to assist our little boy, you have my most heartfelt thanks.

A Brief Note for/about J.N. and Stephanie

I would like to publicly acknowledge with my deepest appreciation both J.N. and Stephanie, who have both accepted new roles elsewhere that will prevent them from continuing to participate as part of Tony’s therapy team. While I am sure those who have accepted the titular positions and filled those vacancies for our family will also do everything professionally possible to help our little man continue to grow, I would like to express to both of you how very grateful I am for everything you did. To J.N. (who was helping our little man generalize safety skills in the community) and Stephanie (who always had something positive to say to Tony about his efforts) your contributions will be missed and I thank you both.

(J.N. with Tony on October 25, 2019. Stephanie pictured with Tony on August 22, 2018.)

A Brief Content Note

My friends, family, subscribers, and loved ones: Miss Emily recently needed to restructure her time working with our family, which has led to a reduction of hours. When it comes to habilitation therapy in AZ, you use those hours or you loose them. Because we are still in the middle of a pandemic that so many super smart sciency people don’t anticipate ending any time soon, it is very difficult to find hab providers under these circumstances, I am acting as a temporary direct care provider to fill the remaining unused hours so that they still remain available to him while we are searching. Always it has been thus that I fill in whatever is missing. For this whole past year, I was doing Tony’s physical therapy myself. I did 30 hours a week of Tony’s hab and ABA therapies for the first two years he was approved for those services because we couldn’t find anyone who was interested in filling those hours…and so it will go for anything our little man needs the rest of my life as I am able to meet those needs.

What that means in practical terms is that between this and the time consumed by needful pandemic-related infection control measures, my personal time in general is currently on life support- and my writing time is incredibly limited. Please expect that the upcoming posts will be shorter on words, pictures, anything even remotely approaching artistic wording, and otherwise rather specific to the point.

Some Viewing To Consider

An essay from one of my reading recommendations last month referenced the viewing of a show with disabled performers. Those of you who know me personally understand that I love watching dance in general, so I decided this month to highlight some videos I have enjoyed from inclusive dance companies or disabled performers. For me, as a viewer, I most enjoy performances that resonate accurately on an emotional level, and each of the segments below were powerfully evocative. I have included YouTube links for clips of these performances, which can be accessed by clicking on the individual titles.

Axis Dance Company. “Full of Words,” and “in-ter-twine.”

What I love about this dance company and the one below is that disabled performers and non-disabled performers seamlessly flow together to portray the stories. I appreciate the brief sensuality shown in “Full of Words,” (everyone is fully clothed for those who might be worried and wanting a heads up). As a society, we need to recognize the needs and desires for intimacy and connection that every one of us has.

Candoco Dance Company, “Unspoken Spoken.”

I would encourage reading the description box on this piece for a bit of the contextual messaging, should it be needed.

Lisa Bufano, “Five Open Mouths (from Heidi Latsky Dance)” and “Five Open Mouths (from WBUR video archive)”

Longer clips of this performance can be found online, however I have chosen smaller clips from the choreographer and a media outlet, as I am passing on only links from sources I feel more sure are authorized to be posting them. The dancer herself passed away several years ago and does not have, therefore, a channel of her own. She was graceful and innovative in the way she expressed her art, with some of her performances (not shown in these clips) utilizing stilts or prostheses.

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Judging the Parents Shouldn’t be a Spectator Sport

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Many years ago, I had a friend with advanced degrees and the kindest heart. This person needed significant support with activities of daily living. I know the level of support required because I was trusted enough as a friend to be asked to help provide those services more than two decades ago so that the family could go on a brief vacation. I will not be discussing further details out of respect to the family as this loved one passed away some time ago.

Shortly after the vacation mentioned above, the family decided a group home placement was necessary because they wanted a break from being full-time care givers. This was very contrary to my friends wants and wishes, and I am not going to lie, my heart was filled with a whole lot of “I would absolutely never…” judgment towards the parents.

Now, more than two decades later, life has taught me many lessons. And I will tell each of you, my much younger self had no idea what the long-term impact of providing a high level of 24/7 support can do to a person. I sure do have a taste of that now, because now we have a son with significant needs, and I myself have experienced the onslaught of judgment from so many sources- none of whom are actually directly involved in providing care or support to him on a daily basis. Except, I can’t even begin to imagine anyone I know other than my husband being comfortable enough to step into my shoes so that our family could take a vacation with the other members.

I have heard some of these judgments directly. Medical professionals, for example, who have said things like “we thought your were exaggerating when we read this form, but you’re actually not.” Nope. Or people who think I’m lying, lazy, crazy, or otherwise somehow screwing this all up. I have said it before and I will say it again, if there is someone who is dealing with very similar circumstances to ours and is doing it better, I will gladly sit at their feet and take notes. Copious notes, filled with as many details as I can cram in, because I need as much legitimate help as I can get. Uninformed judgments, not so much. But often I find that this generally unsolicited type of opinion is the only kind of offering that is not in short supply.

Until that blessed hypothetical day should occur, I’m just doing the very best I can to love and raise both of my children under extraordinary circumstances. And some of us, as parents, have to make very difficult choices. Everything I personally do is about trying to help our son obtain enough skills to where he won’t need a locked down total care environment. I will again quote Ricardo Thornton this week, who said the following of his experience in such a facility: “I witnessed abuse, especially of people with severe disabilities.”

Those of us who live locally may still recall what happened at Hacienda last year, where a young woman with intellectual disability and significant functional limitations was raped and none of the other staff allegedly noticed or documented that she was pregnant until she went into labor. Genetic testing of the baby resulted in the arrest of one of her nurses, and further medical examinations, according to NPR, led experts to conclude that not only had she been repeatedly raped, but that she was likely pregnant more than once.

This is not the future I want for our son, no matter what his challenges or limitations are, and everything I do is predicated on a hope that he will be able to continue to learn and progress enough to remain in our home as long as I am physically able to meet his needs. But that is my choice for me. This is not a choice everyone feels able to make based on their own personal circumstances, and as a community, I think we need to wrap our arms around the parents whatever their choices might be just as much as we need to wrap our arms around their children.

If my friend’s parents had known what was in my heart, I feel like I would owe them an apology. An apology of exceeding depth and sincerity that still might not provide enough balm to cover the wounds of so many years being on the receiving end of community recriminations. If I had one thing I could say to my younger self or anyone else, including someone who themselves is in the position my friend was in, it would be this: go easy on the parents.

You have no idea. You really have absolutely no idea what they are truly going through and the depths of what they are sacrificing. And so many of us are just trying to do the very best we can.

The choice to omit pictures his week was deliberate, because it reflects my feeling that usually people don’t actually see the full impact all of these experiences have had on me. Sometimes it’s like I might as well not even be here at all, because so much of everything I wanted for myself personally in life has been laid upon the alter of doing what I think is right for my family.

And sometimes, when I am speaking publicly about the effects of certain experiences on me personally, I greatly minimize out of a desire to educate rather than wound others. My husband described me to some of his co-workers once as a Spartan because I can seem like a machine and function no matter what when things need to get done in our family. But the truth is I am not a machine, and all of that pain and all of that judgment are like shards that have to be painfully pulled out of my heart one by one.

I have spent the last several years learning how little I really do know about other people’s circumstances, and trying as much as I can to stop throwing sharp splinters of judgment at my fellow parents. We all need a little grace sometimes. A lot of grace, really. And my hope is that we can all learn to give that to one another.

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What These Eyes See

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When Tony and I have gone out into public spaces, eyes are almost always upon us. The eyes of those who saw our screaming son rip an earring out of my ear when I was putting him on my shoulders outside of a local Safeway a few years ago, and mutely watched as I squatted, picked up the pieces, and reinserted the stud while my forearms held his thighs safely in place. Once I started walking, he immediately calmed down, but of course, every eye we passed in the store was following our path because I am guessing the sight of a 5’3” woman carrying a kiddo that size on her shoulders was something they don’t see a whole lot of.

The eyes of a grandmother who frantically scooped up a toddler, clutching her tightly as a fearful Tony, who was many feet from her and not moving in their direction, began to smack his own head with the open palms of his hands outside of a Spirit Halloween store two years ago. The fabulous Miss Whitney and I were trying to get him to go in, but he was scared and didn’t want to try. The eyes of an openly gaping Fry’s shopper a year later who stopped her cart a few short feet away from us to gawk as Tony briefly smacked his head. I looked her directly in the eye and told her to just keep moving. An assistant store manager of a sandwich shop who was surprised I insisted on helping clean up a puddle of vomit that had come from our son after he had a sensory system overload a little over six years ago.

So many eyes have seen so many things, and they have defined Tony only using those brief glimpses of behaviors that made them uncomfortable. And perhaps wondered many things…I have been asked, for instance, why we don’t just keep him at home- or some place else. That is because my eyes are lit by all the love of a mother who has seen so much more than just those moments. The entire picture I see isn’t the small pieces of a puzzle that all those other eyes have seen.

screenshot of a text sent by Ariana

I have seen a sweet little boy who just a couple of weeks ago was crying inconsolably because he upset his sister. I explained to him that if he said “sorry” she’d feel better, and he immediately tried to sound out the word. Hannah came over and warmly thanked him, telling him everything was ok, and our little man instantly calmed. I have watched him try much harder to stay out of other people’s yards in our community after I explained to him that they feel about their yards the way he feels about his potatoes. For the record, Tony does not want anyone else to touch or eat even a part of his mashed potatoes.

I have felt the sting of tears after hearing him say Emily’s name for the first time, as he laughed with joy because she would be coming back after a week’s absence. He still struggles most of the time to combine sounds, and it is rare he will even attempt anyone’s name verbally, but I felt in that moment how much happiness he feels from the bonds he does have. I have seen and heard the unrestrained enthusiasm in his giggles as he requested tickles and chase from someone he loved. Because he does love. People think just because he has level three Autism he can’t, but I know he loves several people quite deeply.

A picture of Tony captured right after he said Emily’s name, while he was still in the midst of reacting with joy to the news she would be back in that day. Photo by Ariana

We have worked very hard to help Tony learn different ways of handling his environment and his feelings, and I have seen the progress come in slowly- but steadily nonetheless. I emphatically agree with the testimony of Ricardo T. Thornton Sr, which was featured as an essay in Disability Visibility, when he addressed the Senate about the importance of allowing individuals who would typically be institutionalized opportunities to grow and develop in the community. Mr. Thornton himself had been in such an institution, and I loved so much of what he said, but I am only going to reference a small portion of it in this post:

“When I lived in the institution, no one would have believed that I could have the life I have today- married with a son and grandchildren, a good job for thirty-five years, a driver’s license and car, and opportunities to speak on behalf of the Special Olympics International…It’s important to have people believe in you and to expect that you’re going to succeed. People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow. People don’t grow in places like Forest Haven and in other institutions.”

And individuals with intellectual disability or certain behavioral challenges don’t grow if they’re never allowed outside their family’s house either.

Happy to be doing water play with Emily, photo by Ariana

We believe in our son. And most of the time he’s a pretty happy guy who finds things to enjoy in life, even with the things that scare him or are hard because of his sensory differences. We have no idea what the future will look like for him, except that it will be filled with love from us, and I will continue to resist the idea that the list of diagnoses he has should have led us to hide him away. Tony will continue to need opportunities to experience the world outside of our house to grow into that future, and I will continue to meet the eyes of everyone who looks our way. Whatever may be flickering behind their gazes, mine will be glowing with pride for both of my treasured children.