Me getting our drums for an activity during an NMT teletherapy session, Tony rocking in his rocking chair. All screenshots and photos for this post were done by either Ariana or Andy.
This week is another photographed journey, but this time we’re going to be moving past the challenges experienced in providing teletherapy to discuss the goals and therapeutic interventions for Tony’s NMT. We have been working on helping Tony increase his flexibility and spontaneous communication using Neurologic Music Therapy (NMT). Facilitating therapy looks different via teletherapy. I was usually a needed assistant even in clinic because of our son’s size and the nature of his deficits and behavioral challenges, but a second therapist had been located and re-approved just before the start of the pandemic so that we could work towards Tony being able to function in a therapy setting without me.
We were planning the transition from Jessi (who was leaving the country for graduate studies) as Tony’s primary NMT therapist to Acadia as the first cases of COVID were being diagnosed in the US. Pauline, who had previously been volunteering some at NMTSA (and was pictured as a volunteer in my last post discussing his music therapy at the clinic), had completed the steps necessary to be hired as a full music therapist and we were at the same time planning for her to become the second therapist so that I could be eased out of those sessions.
Acadia talking to Tony during the greeting portion of our session. He usually doesn’t make eye contact, but he listens.
As COVID cases arrived locally, NMTSA closed its doors and provided teletherapy only during those first few months. To maximize the benefit to Tony, we did two NMT teletherapy sessions per week, one with Pauline and one with Acadia (since we could not work towards to goal of removing me from the therapy sessions). During Pauline’s last weeks with NMTSA, Emmy (who will be taking her place) began to observe the sessions so that she and Tony could both get used to one another. Jessi, who has covered some of Tony’s teletherapy sessions for holidays during the pandemic) provided advisory support for the last session with Pauline and for the first couple sessions with Emmy.
Tony saying “hi” and picking the pictures and names of who he is greeting. Below, shown saying hello to Acadia on his speech device, and thinking about whose picture to pick while greeting Jessi, Pauline, and Emmy.
Usually the NMT therapist sings a greeting song where each person gets to take turns saying “hi.” And yep, my hair gets crazy sticking out all over the place, and it only gets worse as the day goes on. I own that 🙂
The next thing we do in his teletherapy sessions is squeezes to different parts of his body progressing from his feet upwards (feet, calves, and hips shown), done to both a song accompanied by guitar and metronome. This proprioceptive input helps Tony feel calmer in his body. He will often move back and forth between his rocking chair and crash pad for these, and for the past couple months that adjustments have been being made to his ADHD medications, he’s been getting up and running a lot during squeezes.
Jessi recommended rocking chair breaks to increase the amount of vestibular input he received in between each body part squeezed to help reduce his desire to run. I rock him back and forth because I can provide a stronger rocking motion which he enjoys more in therapy sessions. After hand squeezes, we roll a yoga ball or a peanut ball over his body on the crash pad to increase the proprioceptive input.
His NMT therapist will then talk with Tony about the number of remaining therapy tasks he needs to do and then give him some choices he can pick using his AAC.
Drumming is something Tony frequently chooses. We practice drumming at different height and with different body parts, the latter is to help increase his control over his own body.Sometimes I don’t do the best job of getting the laptop adjusted so that the team can see what Tony is doing. We are drumming down low here.
We also work on Tony being able to bounce on a yoga ball to a musical beat. Shown with Acadia.
We also work on him being able to roll back and forth on his tummy with the yoga ball using his own abs and arm muscles for support and the pushing motions.
We also work on verbal sound production and following simple instructions while receiving extra vestibular input via rocking.
I usually provide a visual model of the shape as well as an auditory model with the sound, here Emmy is recommending to me that I try doing some gentle physical prompts on his face also to help stimulate production of the correct sound. That is shown below.
And, he was trying to sneak in some apps at the same time 😀 We end with a goodbye song, and Tony says goodbye using AAC to whichever therapists he is working with.Our last goodbye with Pauline. Whew, still want to cry, like everyone we’ve worked with at NMTSA she is fabulous!And now we’re saying goodbye for now to NMT teletherapy, with Acadia explaining to Tony that she would look different when she sees him in clinic next week because she’ll be wearing a mask. As per his norm, he listened but didn’t want to do much looking at her.
Logged in to zoom, waiting for Pauline to start the session. Pauline was one of Tony’s Neurologic Music Therapists from 2020 to May 2021. Photo by Ariana
This is not a post designed for artistic eloquence, but rather one where I am speaking as a mother directly from my heart to the Arizona State Division of Developmental Disabilities, Governor Ducey, and all those responsible for funding disabilities services in this state. Whatever else we choose to leave behind from the emergency phase of the pandemic, teletherapy needs to stay.
This is not something I say as a person who enjoys making sure teletherapy works as effectively as possible. My son hates teletherapy. Doing this with him isn’t easy for me, in fact it’s far more unpleasant than assisting therapists with in-person services. He doesn’t have the joint attention or generalized cooperation skills that would be required for these sessions to go more smoothly. I’ve put together some photos of just a few of the types of challenges I can encounter every session (and believe me, as many as I have here, it’s nowhere near exhaustive or all inclusive) so that you might better understand why I would say that. Most of them will be following the text of this post, and parts of the photos have been marked out a bit as our son often refuses to keep anything but his underwear on for these sessions since they are happening in home. The pictures are from music therapy sessions, as next week’s post is going to focus on what we’ve been doing for NMT in theletherapy this past year.
Jessi providing oversight during Pauline’s last session with Tony, Pauline, and Emmy as Tony is getting on his AAC device to greet them. Photo by Ariana.
In fact, none of Tony’s current therapy team would ever tell you that the best outcomes can be achieved with him doing teletherapy, which is why we are so excited to be able to head back into clinic at NMTSA with our son next month for his music therapy. But, sometimes parents of individuals with developmental disabilities can’t find therapists for services local to them. And, without teletherapy, they have to give up what little free time they have (if they even have any to begin with) to research a specialty they didn’t go school for so that they can step in and try to provide some approximation of those type of services themselves, or what is probably a pretty common outcome is that the disabled individual goes entirely without that type of therapy. This loss of therapies can lead to decreased quality of life for everybody involved, decreased overall skills, and increased costs as individuals then may ultimately require assistance for skills they might have otherwise gained some independence on with therapeutic supports.
We personally have had periods where we couldn’t find a speech therapist or a physical therapist for our son. And, even though I prefer in-person services, I would have been grateful for teletherapy support from someone who studied and is licensed in these areas.
When our son was first entering therapy, his sensory issues and anxiety of others was so bad, he screamed for entire sessions and wouldn’t let therapists even get near him. His first occupational therapist, Miss Dee, would call out instructions to me over his screaming and I would implement the therapeutic interventions either in clinic or often at home after he had calmed down. This was necessary to move him forward. Even if it might be better to have in-home or in-person services, when none are available, having the option to find a therapist who can do teletherapy services from a distance allows the parents and that individual access to necessary guidance in providing therapeutic supports.
As agencies decide what types of practices they want to abandon or continue with going forward, as a parent of a disabled individual within this community, I am asking each of you to see what is often an unmet need for our families in this community. Teletherapy needs to stay an option to meet that need.
Tony with a toy completely ignoring Acadia, his lead NMT therapist, as she is singing to him in session. I frequently have to help him reengage. The following screenshots and photos were a mix done by both Ariana and Andy for the remainder of the post. Tony refusing to say hi and telling his therapists doing teletherapy that he has to go on his AAC often happens. We have a great team who thankfully has a sense of humor about this. Emmy is a new NMT who has been doing some training with Tony and will be taking over for Pauline, who has moved out of country.
Tony runs off a lot in session, right now because his ADHD is poorly regulated by the current medication mix, he runs off a whole lot and has to be brought back to task, and the computer often has to be moved by me to follow his path around the room or house each time.
There he goes again, running and hiding in the kitchen…and below, he often runs up the stairs to try and watch his kindle or climb the linen closet shelves so he can hide away and get out of therapy and I have to go after him and return him.
Me (yesterday) telling Acadia he’s run up the stairs again and I need to go get him…Tony grabbing his iPad to try and play apps while he’s supposed to be working on a task with Acadia.Did I mention how many times I have to move or readjust the computer while trying to provide hands on support during sessions depending on the therapy type? It’s a lot!Tony running off and trying to hide where Acadia can’t see him, but still doing a little bit of what she asked on the yoga ball.Tony deciding he’s done and throwing the yoga ball across the room…Tony running to the crash pad and ignoring Acadia…Then there’s managing other behavioral challenges because Tony doesn’t like teletherapy. Seen here turning his rocking chair upside down.Tony climbing on the rocking chair because he’s frustrated and wants an activity to be done, me keeping him safe while I talk him down…Tony doing all sorts of things I’d rather not for no other reason that I told him “no,” and he’s feeling aggrieved about doing teletherapy…seen here grabbing a spare oven rack out of the kitchen and licking it.Tony taking advantage of me leaning in to get instructions from Jessi, Pauline, and Emmy to put the drums away while we were still using them. Below, me trying to sell Tony on rolling on the yoga ball as requested by Pauline, Tony angrily bouncing it away with his tummy.
Tony grabbing a snack before running to do what Acadia asked him to do by rolling on the yoga ball while she was singing…Tony wiggles around a lot and needs frequent hands on support to complete tasks, in this case, needing a reminder to keep his legs lowered so that I could roll a peanut ball over them for pressure input to help balance his proprioceptive system. Me listening to Pauline, Jessi, and Emmy about things that I can do with Tony in session. And that is the main benefit of teletherapy, giving a family access to support and expertise they otherwise wouldn’t be able to have because of a lack of local available therapists.
The wristband used to notify staff that I needed to be kept for 30 minutes observation because of my allergy history after being given my second dose of the Pfizer COVID vaccine, All photos by Ariana.
“Mama!”
I heard Hannah call out this fearful exclamation as I slipped down the last four stairs in our house, emotionally crusted over from I can’t even begin to tell you how many sleep deprived middle of the night escapades with Tony. My physical reflexes were often slightly impaired and set to spastic that early because I hadn’t reached caffeine yet and it’s pretty difficult to function on so little sleep and look normal without that.
I was clutching one of our air purifiers. I usually took one of them upstairs to run in our bedroom at night to help reduce my nasal allergy symptoms. Andy hadn’t been enthusiastic about spending the money on them last spring, but I felt like it would be beneficial in my efforts to do everything I could to preserve as much of Tony’s therapy programs as possible during the pandemic. And on the morning I fell, we had only owned them for a few short months. So, in a moment of concern over his reaction should one become broken, I made the poor choice to wrap myself around the purifier instead of letting it go and positioning myself for a safer landing.
I hit my head hard enough to cause dizziness and ringing in the ears, and I landed on my back across three of the stairs, injuring my lower back and causing two stair imprint lines of bruises to run across the upper portion of my back. I also mildly sprained my left foot (minimal swelling, barely any bruising), which only a few months later would be reaping the interest of that initial injury. Hannah very sternly told me I was in no shape to be taking Tony on a walk for at least a day, and the memory of her love and concern shined a healing light on my emotional state if nothing else.
I did restorative yoga, stretching, and gentle body weight strength training exercises to rehab my back. I was just getting to the point where my back was healed enough to start working back into strength training when I sprained my left foot in January, this time with bruising and swelling so nasty I wasn’t entirely sure if conservative treatment alone was going to be enough to heal it, though I felt that was where I would prefer to start just in case luck had favored me (and it apparently has there at least). And then came anaphylxis, a root canal, POTS, thrush while I was on prednisone…
Whew. Sometimes it feels like once I get on the injury and illness merry go round, the velocity presses into my sides, fuses me to the center, and keeps me on that ride far longer than I want to be. As a child, I always liked merry go rounds. I wanted to love them, but I was more in love with the idea of them because I would see my classmates squealing with laughter on them. I, unfortunately, suffered from motion sickness to the point where my parents were sometimes having to pull the car off to the side of the road so that I could get out and vomit.
So if I got on a merry go round, I was happy just for a short period of time, which was why I could only like them. Sometimes the spinning would go on for far too long and I would close my eyes and work at communicating internally downward a need to be calm to my stomach. As I got older, most of my motion sickness muted enough to become another relic of my past, and I haven’t needed medication for it since my childhood. Sometimes these days if I am swinging with Hannah at a park, I can only tolerate about 10-15 minutes, but car rides and amusement parks with short burst of rides are no big deal for me right now.
May 5
May 6
May 7
Sometimes I end up back on a ride I thought I got off. About 24 hours after getting the second dose, itching, swelling, and redness started at the vaccine injection site. Sometimes it seems like once my immune system gets ramped up for something it starts whacking at everything. I was on a systemic antihistamine and alternating topical cortisone and Benadryl cream. The redness continued to spread until the evening of May 7th even with all of that, redness and swelling started to go down considerably by May 8th, but mild redness in that area and itching persisted for more than a week.
When I purchased the book I recommended last week, it had just been released and I had just been told that the difference between my laying down to standing up heart rates qualified me for a diagnosis of POTS. I had no idea how long this particular condition was going to leave me on the rehabing it merry go round, and I was thinking it might help me feel less alone in the world to read the words of another person with experience living in the chronic illness playground. I knew that much of my strategy for moving forward would be in carefully managing my own mental health, and I knew that limitations to my physical activity combined with some of the changes that could be required to accommodate my new allergies would be adjustments that would come with grieving and moments where I felt downright unenthusiastic and even bummed out about all of it. Part of managing that for me is listening to the words of others who are on a journey that can possibly teach me something about how to be more graceful in the navigation of my own individual challenges.
My meat sensitivities historically had a role in leading to asthma attacks, so the first few times I added meat into my diet while we are working through all of this I checked my pulse ox afterwards.
Right now I feel a bit as if I’m feeling my way forward through the dark with some of this. My former cardiologist’s staff didn’t feel comfortable seeing me for further testing to rule out any other heart conditions because of Andy’s job. He is sometimes what we would call frontline in this country. My husband will not refuse to treat COVID patients and I am proud of him for that, he has my support and we follow all of the recommended safety guidelines for healthcare workers. I live in a large enough metro area that I feel like I can acknowledge that this is one the things I am struggling with as I try to get off of this merry go round without automatically making it obvious who I was seeing. For me, it is still very uncomfortable transferring to a different doctor because that person will almost certainly know my former cardiologist so I am waiting to see how much resolution I can get on my own, and initially I had been thinking, well, this isn’t too big of a deal for me because I’ll drop into Ornish’s diet. Unlike conventional western treatment for heart disease, Ornish’s program can actually lead to reversal.
My standing HR (67) and Pulse Ox after breakfast yesterday
The last set of testing has shown that this may not be doable for me with my newest food allergies. I tried lentils at home (since they weren’t on the test), and broke out into hives even on an antihistamine. I will be going through all of the bean types, but unless you can avoid meat and heavily limit your dairy, Ornish’s diet isn’t an option. That realization was definitely a harder thing for me, where I looked at this merry go round ride and felt that it had certainly failed to produce merriment, plus I wasn’t sure I could find it likeable even. I loved being a vegetarian, and I have had to work hard on my emotional self-care these past few weeks.
I still don’t entirely know what I want to do about all of this. My standing heart rate is slowly going back to being closer to normal for me (my current standing heart rate is also now within normal for medical standards in the US), but there are some caveats. I’ve weaned myself off of the compression tights, but I’m still adding way more salt to my diet than before and needing to avoid caffeine. My heart rate is also noticeably lower after eating fibrous vegetables.
My heart rate still goes higher than it should or than it used to for some activities, but the chest tightness and shortness of breath are improving, but sometimes they are still present. Doing short sets with 25 pounds is currently sending my heart rate above 130. Climbing to the second floor of our house via the stairs three times back to back still puts my heart rate above 130. But for the first time last week I was able to start using the arm peddles on my exercise bike again and have my heart rate stay stable in a desirable range (though still higher for me than it used to be, it is a respectable rate for a woman of my age). I can do a slow jog for 150 steps before my heart rate goes above 120, though it goes up way fast and way too high if I pick up more speed. Those last two items though are big improvements in my autonomic nervous system’s ability to regulate my heart rate with activity.
I have no idea what the rest of this POTS ride is going to look like for me or if I’ll be able to get off of it entirely. Some people can. The allergies have been a lifelong ride, though the challenges change with that from time to time. But I have recovered enough functionality to feel like I can find peace with my activity level. The food is still going to take some time to get there, especially since I can’t rehab my way off of that particular merry go round.
Emotionally caring for myself the past couple of weeks with lots of colorful makeup. My history of allergic reactions is part of why I don’t really like surprises all that much, so Andy and I agreed that I get to buy my own presents, and generally lately that’s been eyeshadow. None of it photographs as multi-dimensional as it looks in real life, but these were some of my favorite eyeshadow moments from the past couple of weeks. I hope each of you have been able to do something you love to take good care of yourselves also! <3 Ari
Perhaps you cannot truly know what a gift trusting and sticking it out past the harder parts is to the heart of a mother of a child with the kind of needs Tony has- what it means to and for him. I know my understanding of love changed entirely the day our sweet Hannah was placed in my arms, and even that definition was hammered, beaten upon, and expanded even further as Tony’s extensive needs began to reshape so many things about our family.
Perhaps nothing I say may give those feelings a just description, but they are still there and infused with deep gratitude. I really appreciate that you show up each week after those first few sessions, however we’re doing therapy, with a positive attitude about Tony’s ability to progress. Thank you for being patient with our son, for listening to my input, and for being so respectful of our protective equipment requirements for in-home providers. And thank you for trusting that our home would be as safe a place as any to work during this pandemic.
Photo by Ariana
To Dr. L & His Fabulous Staff
I have loved your office ever since your former business partner was my dentist- you guys all know that. Your team has always gone above and beyond to take care of whatever was going wrong with my mouth, but I feel an extra note of appreciation is over due at this point. I know it was not easy right now while you are short a dentist to work me in for extra appointments to check on whatever fungal nastiness was going on with my tongue after the prednisone. Thank you. Thank you for making that time. Thank you for helping me feel cared for and valued during a difficult time.
Some Reading To Consider
What Doesn’t Kill You: A Life with Chronic Illness- Lessons from a Body in Revolt, by Tessa Miller
I purchased this book three months ago, but just finished it yesterday. That is not a slight to the author. Because of my schedule and circumstances, I honestly do much better with YouTube or other things I can listen to while I am driving, washing dishes, etc. I probably should have purchased the audio book, but I didn’t, so here we are, three months later.
I think it is important for some of my readers to know that even without my particular set of circumstances, some of Ms. Miller’s autobiographical musings may be triggering and require some breaks in reading to get through. She has a background with some themes I know that I can personally be triggered by, including abuse and loved ones with addiction. She also writes a bit about a toxic and abusive romantic relationship she was in. All of this is woven in and out of her experiences as a woman diagnosed in her twenty’s with IBD, eventually confirmed to be Crohn’s more specifically.
The next thing I would like to share with each of you about this book as something to keep in mind is a quote from the second half: “Empathy is more than putting yourself in someone else’s shoes; it’s using your power to fight for changes that don’t directly benefit you. It’s more than understanding why another person feels the way they do; it’s learning about the systems (or lack of) that contribute to their emotions and behaviors, then figuring out how you can help.”
I think that the listening to or the reading of different perspectives is important. I know some of you may immediately disagree with her ideological positions and might want to exit the book the first time she criticizes certain things. But I think it is important for each of us to take the time to understand each other and why we believe the way we do, which can only happen if we listen to the fuller story. The polarizing and “othering” tribalistic trajectory of our American communities seem to be only be breaking people down instead of building anything up.
Her writings are framed around her own specific experience with chronic illness, so despite a brief section of encouraging notes towards the end from a few individuals with other conditions, readers with other chronic health challenges won’t necessarily see a story that directly mirrors their own. I think that’s ok, because again, we can not share the burdens of another if we don’t know what those are. She also has the kind of ethereal blond beauty that usually ensures improved outcomes in many areas of our society (including healthcare), something she acknowledges to a point when she notes that things were easier for her as a thin white woman.
Despite those things, I think some of the information and themes are still very useful to anyone with another condition. She has appendices that detail resources for dealing with certain types of problems that can be generalized to anyone navigating the American healthcare system. Many individuals with a chronic illness can certainly relate to what it feels like to have had a negative experience within that healthcare system, but some elements like the need to fight for authorization of certain medically necessary treatments feel almost dehumanizing when you have to go through it and I am glad that she put a spotlight on some of those things.
I think it is valuable reading to keep in mind for those who don’t have a chronic health condition yet either, because many Americans will become permanent fixtures on the chronically ill thrill ride at some point. And even if you are one of the blessed and lucky few who will spring spryly out of bed each day your entire lives without some form of chronic illness, I think it is still important to understand the life experiences of your friends, neighbors, and community members.
One Last Bit of Viewing
I woke up the other morning to find this on our kitchen counter. I had given Hannah permission to use all of my old painting supplies- I don’t really have time anymore and it gives me joy to see someone relishing them. I thought she did a lovely job, she based her painting off of a photograph of Diana Ross that was taken by Harry Langdon. She gave me permission to share it with the family on the blog, so this is what I’m closing with today.
Tony & Justine working on upper body and core strength, all photos by Ariana
Miss E, Tony’s previous physical therapist, left the clinic where Tony was receiving PT around the same time as that organization was pushing forward with some business model changes that I felt would lead to clinic conditions that would be less productive for Tony personally. I of course support their rights to move in whatever direction they feel works best for them as a business, but as a mom I have to make decisions about what will be most helpful for our son. There was an in-home physical therapy provider who initially took up his case but then needed to quit for personal reasons a couple weeks later. I continued to work with Tony on the existing goals that had been established under Miss E so that he wouldn’t loose progress.
Although our DDD support services coordinator was trying to help us find a replacement for nearly a year, we remained unsuccessful until late August of 2020. I know that every therapist has a comfort zone for what they want to work with, and the first few sessions with Tony are often the hardest, so I was nervous as always but hoping this would be a good fit for Tony and for Justine. The first day she was working with him there were a couple of more sustained self-harming breaks, lots of fleeing, hiding in the closet, no desire to interact with her, and he broke the half bathroom door because he was so emotional he wasn’t processing my words of caution as he was trying to close the door while a temporary swing set up was hanging in that space.
The lifted up door panel to the half bathroom after Tony’s first session with Justine.
I told her at the front door as she was leaving that first day that if she could just hang on through the first two/three weeks, he’d get much easier to work with once he got used to her and I hoped desperately that she’d believe me. By week three things were much less dramatic (he flashes many smiles for her now, is much more cooperative, and he’s only had one very brief episode of self-harming in all the months that followed those first two weeks) and we are so very grateful that she was willing to give our little man and our family that chance.
Most of Justine’s work with Tony has been in-person in our home. Because we are in a pandemic though, there are times where we will do a telehealth session. If another provider who works with our family had an unmasked exposure with a person who ended up being COVID positive, we go into quarantine until testing results are available. Although we are working on Tony wearing a mask in-home while working with providers, he is unable to tolerate it for full sessions yet (some of these sessions are multiple hours in length depending on the therapy type). So even though everyone else is wearing a mask during the entirety of therapy sessions, Tony is not and transmitting infections to our family is still theoretically possible through him as closely as he works with each therapist.
practicing mask wearing during an in-home session with Justine
telehealth
telehealth
Only Tony’s part of the screen is shown here from a telehealth session with her to respect the privacy of Justine’s home. Working on upper body and core strength.
The two goals we are working on actively with Tony involve improving his upper body strength (the ultimate goal with this is for him to be able to support himself on his elbows for three minutes with only his chest elevated slightly off the ground) and walking down the stairs with an alternating gate. Both goals we have needed to do some skill chaining and some modifications to help him work towards the desired end goals. For upper body he needed a bolster initially, and we did work stepping on and in between buckets initially to help him establish the correct walking pattern for the stairs. While the buckets were previously purchased by me some time ago, I did need to buy a bolster for this, and both of those modifications worked fabulously with a bit of coaching for Tony and were recommended by Justine.
We are trying to transition him back into wearing clothes in session, but at most he is willing to leave them on for a couple of minutes at this time.
The rest of the post is going to be picture galleries with brief comments on what is happening, some of the things we observe in session, and what is being done to help him reach his goals. Once he has completed one of these goals, we will be moving on to another physical therapy target. The pictures are carefully framed or edited in a way that you can see what is happening but not much else because one of the things we have seen regression on during the pandemic is Tony’s willingness to keep anything but his underwear on in-home. Our son has a history of intense tactile defensiveness (which means his skin nerves feel sensory input much more strongly than someone with a typically functioning nervous system and even gentle touches can feel painful or unpleasant), and I think this is something he felt like he needed more control over in the face of so many pandemic related changes that were completely outside of his control. With everything that is going on, I am so glad though that for Tony there is finally once again PT.
Upper Body and Core Strength Work
The bolster was used initially to help him support the weight of his body until his muscles became strong enough to do that independently. Justine slowly began reducing the use of the bolster a few weeks ago, starting this by letting him use it for all but one of the repetitions and then gradually increasing the number of attempts without the bolster. Tony often asks for snacks on his AAC while we are working.
We use Tony’s kindle as a motivator while he is working on his upper body strength. He is much more willing to cooperate and try to hold the position as long as possible if he has something fun to watch. We will move on to a different goal once he can hold this position for three minutes.
Even medicated for his ADHD, Tony moves a lot. Right now his medication combination isn’t as effective for his ADHD symptoms, and finding the right balance for both his sleep and his ADHD is something his developmental pediatrician is working on. Often when Tony’s working on the upper body exercises with Justine his legs are kicking, kicking, kicking away…
Buckets and Balance Beam Work
I purchased a small balance beam off of Etsy when we pulled Tony out of the clinic mentioned at the beginning of the post. Justine will have him walk across the beam, then back again to walk across the buckets. Individuals with Sotos Syndrome have deficits in core muscle strength, so balancing skills can be harder to learn. He is able to walk across without falling or wanting to hold someone’s hand for extra support about half of the time right now.
Heading towards the buckets. I did purchase these a long time ago from Amazon. Most of you already know I don’t personally shop there by and large at this time, but as always, each of you can shop wherever you feel like. These are definitely well made and work well for in-home therapy.
Initially, Tony wasn’t willing to go down the stairs for Justine. So she would have him practice the alternating movement by stepping on the bucket with one foot and then off with the other, keeping moving in this manner through the entire bucket chain. Now she will do these exercises with him leading up to the stairs.
Stair Work
Justine will stand in front of Tony on the stairs on the way down, and when he is needing support completing the alternating movements, she will provide gentle hand prompts to the backs of his legs.
Sometimes now Tony is able to successfully go down the stairs using an alternating movement without support. His preferred method of going down is kind of a shuffling hop where he hop/slides down and lands with both feet on each stairs.
A Few Other Kinks We Work Through
Sometimes Tony will engage in task avoidance behavior like getting in his body sock and I will need to help extract him and prompt him to do as Justine asks. Sometimes he wants to just lay down and watch his kindle on his crash pad, and Justine or I will gently lift up on the screen to prompt him to respond to our verbal instruction to return to practicing the physical therapy task that was asked of him. We are very grateful for the patience Justine has showed in working with our son!
I’m starting a bit later than usual to plunk out my thoughts this week because I had to spend some time in one of my happy places to insulate my emotional reserves some for this topic. Which of course, should serve as a warning that I may be about to type some things that some of you won’t necessarily agree with. Those of you who have been reading with me for a while may remember that popularity isn’t my strongest point these days.
(Screen shot of Annette showing off her new palette collaboration with Menagerie cosmetics from the video I was watching instead of starting my post, partial picture of me. She and I have a similar love of color and foiled shimmers, so I watch her channel more than some.)
Tony, who is nearly 9 and still needs a five point safety restraint system when driving for his own protection. Getting ready to take Hannah to school, photos by Ariana.
For those of you who have more recently begun checking in on my blog, I am sure you have probably figured out that I don’t have mainstream views for the kinds of care and support an individual with the level of disabilities our son has should have access to. The most concise way of summing up what I advocate for is that I support every effort for maximum inclusivity possible. I find that isn’t always the first thing people consider when thinking about someone like our son, though I hope in time that will change.
I hope each of you, in having been warned you may not agree with me, will at least hear my perspective with compassion and recognize the humanity of our family in all of this. That being said, I cannot go any further down my planned path without first dropping to my mental knees, bowing my thoughts, and honoring the pain and loss caused to so many with the deaths of more than 570,000 Americans from COVID.
The number is heartbreaking, and it will only continue to grow. I believe the reporting shown in this screenshot kind of sums this up: the lack of cohesion in following mitigation strategies in our collective actions have ensured that COVID will be part of our society for quite some time. New variants will continue to emerge, updated vaccines will continue to be required, far too many people will continue to die, and many survivors of even mild illness will continue to discover that their health may never be the same.
Although there is now evidence that COVID infections were occurring in the US earlier than originally thought, in my community there wasn’t really much serious discussion about what could happen long term until early March 2020. By the end of March I had already been through some experiences that made it clear to me that pandemic pressure was going to feel differently for our family than for some. From that moment on, I carried a tremendous weight from the expectations held by some that anyone working or living in our home was more likely to get COVID because of my husband’s job. For those of you new to our blog, my Andy works in healthcare.
Andy does a lot for our family outside of his job, shown here getting our new fridge into the kitchen.
Some feel this is logical and prudent. I respectfully feel that protective equipment properly worn combined with the training my husband received places him at a risk substantially lower that that experienced by many other professionals, such as those working in restaurants, grocery stores, or pharmacies. My honey also always knows the symptoms of a patient before he ever interacts with them and can don increasing levels of PPE accordingly, on top of having ample opportunity to wash his hands or clean surfaces before and after every patient. Again, that isn’t an advantage afforded to workers in many fields. My husband never caught COVID during this past year. He was tested for antibodies at one point even to make sure there wasn’t an asymptomatic infection that had been missed, and that was negative. No one in our house has been sick that way this past year (anaphylaxis and POTS don’t qualify as viral infections), and now he’s fully vaccinated. But we are still on the “too risky to interact with” boat for some people because of his job and for some people we may always be.
In giving those brief comparisons I feel that it is necessary for me to state that I don’t advocate stigmatizing anyone based on their perceived job exposure, and I have chosen to respect the comfort levels of everyone involved whatever that may be. I think we are all in this together and we should all do the best we can to be there for one another in all of this. My freshman year of college, I volunteered for an HIV awareness group, and we went around campus discussing the importance of testing and safe sex. One of the things we often pointed out is you can’t tell whether or not someone has certain STDs based on how they look. And with a pandemic where asymptomatic spread is such a driving force, we can’t succeed at limiting cases if we think that we can tell how risky someone could be based on where they work. If we want to reduce spread, I think we have to treat everyone as if they represent the same level of risk. For me, because I don’t advocate shutting down our entire society, what that means is I wear a mask around everyone I don’t live with. Period. No matter how much I love them. No matter how much I miss seeing their face. No matter how uncomfortable the mask is or how much it is ruining my makeup. And believe me, especially if I have to do community safety exercises with Tony and another therapist, wearing a mask with fabulous filtration ruins everything from the cheeks down! And the mask will remain even after I get the second vaccine dose because of the variants.
A few months into the pandemic, someone who interacts with our family on a regular basis caught COVID from someone else that they had direct daily contact with. After I had expressed my concern for this individual, I sank into the floor sobbing. The pressure of the expectation that anyone connected with us would get sick from us had done dark and ugly things to me emotionally for those first few months, and I had to do a whole lot of self-care to keep that weight from crushing me. I thought perhaps in that moment, this might illustrate to those around us who were still concerned that risk isn’t always what people think it is.
What people thought then and what people think now isn’t really in my control. I find that people still certainly can view things differently, even if they work in some area of healthcare themselves. And believe me, nothing causes pandemic pressure like finding out a provider necessary for your medical care has staff that isn’t willing to work with you because of potential exposure from your husband’s job. A year into this with a virus that likely will be around in some form or another the rest of my life, that can honestly feel pretty scary. I just try not to live in that fear while I am seeking to respect individual wishes and do the best I can to move forward someplace else.
Casandra & Tony
Emily & Tony
Justine & Tony
Some of the providers who have trusted us and made our home a place they work during this pandemic. We are grateful for everyone working with our family in whatever capacity they have chosen.
The isolation from this pandemic nearly ate me alive. But it didn’t in part because of those who trusted our family to do the best we could to protect them as they worked with us in home or who participated with us via telehealth. Sometimes the level of diligence required can emotionally be hard. I got together outside at a park (masked of course) recently with my good friend Gena and left early because Andy texted me he had a headache. I’ve only seen her a few times in this past year, and we used to get together every week. Turned out to be related to some cramped muscles, but I don’t feel like we’re in a place where I can just shrug things off without investigation because I live with this heightened awareness that some view contact with us to be riskier because of my honey’s job. Even if he’s vaccinated. Even if he’s wearing an N95 and a face shield as needed.
A few of my notes from “Echo,” the book that broke my long streak of refusing to purchase anything from Amazon. Yep, totally kept me sane that week 🙂 Still not planning on purchasing much from Amazon if I can avoid it, but that’s my personal problem and does not need to be yours 🙂
Sometimes I have to play extra little games with myself mentally to keep from going bonkers. I actually really love to visit with and talk to people on a regular basis. I kind of smother to death internally with too much isolation, but I’ve found that sometimes making random notes in a book I’m reading that would be similar to the types of comments I might make while watching a movie with a friend can keep me from totally loosing it when I need more people time. I’ve had to learn I can and should be my own friend in all of this. Because the pandemic pressure has been very real for me in a different sort of way, even if none of us here have had COVID at this point.
And I’m thankful for that. And I am thankful for each of you.
Our new fridge…this situation definitely didn’t turn out the way I expected, all photos by Ariana
So, as I’m typing this, the new fridge I ordered yesterday (because the old one is not going to be gasping out enough cold air to keep food safe for much longer) is sitting in our living room. I’ve been in non-stop (and therefore mentally out of breath) mode since yesterday… and now have unexpected complications in the form of an uninstalled new fridge and an unmoved old one with a faulty water valve. Soooo… I think I’m going to need to rush us all madly through this week’s post so that I can keep from getting crushed as my schedule builds and rolls on.
When I was in elementary school, I fell in love with the movie Labyrinth the first time I saw it. Sometimes as I think about navigating self-care in my own life, I feel like perhaps I am in a similarly shifting maze, with the ground heaving and shifting, new walls ever emerging.
Two of the welts five days after testing and with antihistamines definitely in my system to try and keep them in check…
Scratch testing last week for foods revealed a shifting set of potential allergy goblins. Some of them I know are probably more significant, because as I type this 9 days after that testing, I still have itchy welts from three of them. If I knew which ones those were, I think we could probably skip challenge testing those because they clearly represent the three things that my system has the hardest time with right now. But getting out of that maze may require some significant dietary adaptations…I may no longer be able to safely be vegetarian. One of the items that listed as a higher sensitivity is the Navy Bean, which is genetically very similar to black beans, kidney beans, and pinto beans. They didn’t test for lentils, and in checking on those I see they are a different genus and species, but I’m still in the process of trying to decide how I want to handle this. I very much like being a vegetarian, but I have to make sure my diet can sustain my health appropriately.
The nurse involved in the testing told me they go with the symptoms, and in way, it is freeing to hear that trusting my body is important. I felt so much confusion after the RAST testing, because for example, that indicated antibodies to bananas but none to watermelon. But I can tell you bananas have never made me feel badly, but watermelon gives me a runny nose. I can tolerate it, but I have felt that my body is more sensitive to it. And cinnamon came back as fine on the RAST, but I had asked for a RAST on it because I had felt like a cinnamon tea (heavy amounts of cinnamon in that) had increased swelling on my tongue back in January.
After the RAST, I thought it must have just been the heat from the tea, and since I have been eating small amounts of cinnamon since the RAST came back, I know that little bits won’t throw me into anaphylaxis…but could I still have some sort of a problem with it? Absolutely. And for that reason, even though the scratch test for Stevia didn’t come back indicating a full on allergy, since there can be some error in the testing, I will ask them to challenge test that because I popped neck hives that last time I had something with that in it. Perhaps my system was just hypersensitized at that point and whacking at a lot of things, but I feel it is better to run through that corridor as safely as possible.
A mystery in the self-care maze: Why, oh why, does this setting spray need xylitol?
Basically, I’m actually trying very hard to follow exactly what they have asked me to do to get around these new lifestyle road blocks, and sometimes I am frustrated by the unexpected places I find some of the items I now need to avoid. Xylitol in setting spray…why urban decay, why??? Andy thinks maybe they want a person’s face to taste sweet if licked? I don’t know, I can’t imagine any amount of xylitol would make my foundation taste good…
I’m also having to go over my make up collection. All of the caffeine I can’t drink right now because it raises my heart rate too much was helping me mask symptoms for fragrance sensitivities. I had to throw out several of my favorite lip products. I tend to like a pale, frosty lip with darker eye shadow looks, and Ballerina Shoes was my favorite. Until I realized I was getting gassed by the fragrance without the caffeine. Now I’m on a quest to find a new pearlized favorite with a scent I can tolerate. Some aromas I do fine with…Lunar Beauty’s gloss smells kind of like a nutty cookie…and doesn’t cause me any respiratory problems. Root Beer scented stuff, cotton candy scented stuff…fine. Floral? Nope.
All of these went in the trash for fragrances I now realize I am sensitive to…
Too pale without a lipliner to deepen it up
Kinda like this one…
I feel more like Goldilocks as I’m trying to find a new product…some are too pale, some don’t have enough pigment, some are just right.
And some old sensitivities don’t seem to be an issue right now. When I was a little girl, I had an allergic reaction to my first vaccine. All of the rest of my childhood vaccines were given in half doses. After discussing the situation with my allergist, I went this past Monday for my first dose of the Pfizer vaccine. I got a little bit of a runny nose for the first hour afterwards, but nothing more dramatic then that. I felt so much relief to have seemingly left that sensitivity in an oubliette.
State Farm Stadium Vaccine POD
They put a yellow ribbon on my window to alert staff I needed to be held in observation longer because of my allergy history.
Sleep is still a mess, but Tony’s developmental pediatrician has been working on trying to tweak his medications so that he’ll sleep through the night. For a while now he’s been struggling with rebound waking from his ADHD medication. So far, we haven’t really found the right combination (last night he still was awake at 1:09am after the latest change to .3 mg of Clonidine), but hopefully one of the other options she can try will help and perhaps someday I’ll be able to step out of this trap of sleepless dance.
Tony, bouncing off the walls during his latest NMT telehealth session, taking a break to roll on the peanut ball and eat an apple.
As I rush forward into my future, trying to find an adequate way to care for me in the hectic maze of circumstances that is, I am looking forward to a planned return to clinic based therapy at NMTSA in early June. I declined an offer to go back in clinic this past fall, but since Tony is tolerating a mask for longer stretches, I feel like the time has come to cross that bridge. I feel badly because I really haven’t had a good way to photograph those at-home sessions, and I think it’s important to document what that process looked like, so I’m still trying to puzzle my way through how to do that in a way that doesn’t increase my stress. And in keeping with that theme, I’m going to rush all of us out of my current self-care labyrinth with my best wishes that each of you find moments of meaningful joy in the week ahead.
I was somewhere between 18 months and two years of age (I suspect closer to the 18 months side because I am seventeen months older than my sister) the first time I remember being placed in a situation of overwhelming responsibility. My mother had gone somewhere or returned to work after having given birth, and my father had locked my baby sister and I into our bedroom. His parting instructions, given with enough expressive menace on his face to indicate there would be unpleasant consequences if I failed, were to make sure that she didn’t cry or make any noise.
As a mother of two, I would never think a child so young could safely provide care for an infant in any way, shape, or form…and I certainly wouldn’t expect they’d be successful in keeping a baby quiet. I remember looking at her, stunned frozen by the emotions that fluttered frantically inside of me. The need to protect her. Enormous fear and inadequacy. Hopelessness at the task. Then I firmed myself up, tried to make every emotion I had take a quiet seat in the back of my mind, and did everything I could to become a toddler mother.
Although I am sure that I had probably experienced some form of stress in my life prior to that given the other things I remember from my very earliest years, this is my first clear memory where I can access my thoughts and feelings enough to identify that condition existing in me. Since then, significant levels of stress have always been a part of my life. Not because I frequently overreact to certain situations, but just because my life has unfolded with a whole lot of events most would find highly stressful. And, I didn’t really begin to understand what high levels of stress could possibly be contributing to health challenges for me until I was in my twenties.
Pollen is definitely not my friend, but I sure do find all sorts of flowers beautiful. Photos by Ariana
All my life I have struggled with allergies, and I’ve had a fair number of hypersensitivity reactions of one kind or another (with a mix of being in the moment and a bit delayed). After I read Gabor Mate’s book, I wondered if it couldn’t be that because my psyche felt overwhelmingly under siege from such a young age, perhaps my body was striking back at a world my emotions were constantly signaling to it was dangerous. That is sheer speculation of course, because no amount of meditation, relaxation, and mindfulness has eliminated my allergies…but I can link nastier flair ups with stronger reactions to periods of higher stress in my life. So certainly there is a connection between my stress levels and some of the hypersensitivity reactions.
I was diagnosed with IBS in high school…my friends had to walk me the nurse’s office because I developed stabbing pains in my abdomen. This was during a period of pretty intense turmoil in my home life. I was sent home, taken to a doctor, testing was done, told IBS was my problem, told to take some pills (that I stopped taking because they didn’t really do anything but make me feel stoned out of my mind loopy) and that was it. Only years later did I learn that IBS was considered to be a condition caused by stress.
Ok, from the allergy perspective, some food labels are just awful. What natural flavors and which vegetables are in the juice, specifically? I have no idea if this is safe for me to eat or not…
Becoming mindful of that connection in my twenties and carefully regulating my fiber consumption has allowed me to stay flair up free most of the past two decades. Now I only have problems if I’m having one high stress event right after another for a sustained period of time…and unfortunately, even though I left abusive situations behind a long time ago, as a parent of a kiddo with some pretty intense challenges, that can still happen sometimes.
After my second ER visit in January (for the elevated heart rate and low blood pressure), I started trying to ask my body what it needed to recover and do everything I can to give it that. One of the things a moment of mindfulness made very clear to me is that right now, in this moment, I need to give myself more time to rest. I’m not really talking about sleep here, that’s still often outside of my control. Despite a recent med change our kiddo’s developmental pediatrician made to try and help with that, I need to wake up and be up often in the night to help Tony or keep him safe.
What I can do is have extra down time to just watch videos, read, or just exist quietly in the moment. Some of my favorite ways to provide extra nurturing for myself include listening to relaxing music while bathing, playing ASMR or meditating before sleeping, and doing affirmations while I’m putting on my makeup. I’m a big fan of yoga because it’s like moving meditation, and sometimes that helps me to stay in the moment more easily.
I also am honoring what my body is telling me about readiness to resume certain tasks. I’m still leaving most of Tony’s habilitation hours I am responsible for undone and replacing them with self-care, and the tasks I am doing (like community safety) I am not clocking in for because it’s easier and less stressful for me right now to do that without having to complete the paperwork required for getting paid to do them. That will probably change more in the upcoming weeks, but for now, I need to give something back to this body that has allowed me to do so much for our son over the past nearly nine years because emotionally I just need a break and there isn’t anyone but me available to make sure that happens without costing him therapy hours. If my body doesn’t get what it needs to heal adequately, the long term impact of that would be much worse for him and our entire family.
Tony yesterday, in the process of asking for a book to be read to him during speech therapy.
For anyone with a high stress lifestyle, understanding the stress-disease connection is critically important. Some stressors can’t be eliminated, and when that is the case, a self-care game plan is necessary to offset some of the possible health impacts. And as a side benefit, having so many mindfulness tricks that help me relax also helps me to identify when a problem needs further medical examination or just extra relaxation.
Paying attention has been a problem. I was putting this in my smoothies every day the two weeks or so leading up to my tongue swelling in January, and aside from the fact that it looks like it has a few of my possible new food allergy items in it based on recent testing, I know I have grass allergies and I just didn’t look and was still using it. I know…not good, and something I now am focused on paying more attention to, but sometimes when I got very overwhelmed I wasn’t paying attention the way I should…
I just finished the food scratch testing, and next month I start challenge tests for some items that were indicated as new allergies. And I am doing the best I can to adjust my diet according to the results and pay more attention to what my body is communicating about items I consume. Having xylitol turn up positive as a new allergy on the scratch testing was a real bummer, because it’s in plenty of dental products and I loved me my xylitol mints and gum. I still have some cardiac testing outstanding that would be prudent at this point, though my standing heart rate is greatly improved at this point, it still goes up higher than normal quicker than normal (normal for me that is) for anything but milder activities.
As I said last week, high stress is often how my life rolls. But I’m still so grateful to be on this ride that my life has become. I may not be able to change some of the sights along the way, but I do have things I can adjust to help me stay on it as long as possible (and probably each of you do too). And I love (and do everything I can to live) that.
To the sweetheart from my allergist’s office, Anonymous online but not in my heart
I beg that you would never think for even a second that the brevity of this note signifies anything to cheapen how much a single moment could mean. For saying to me that I deserved to be a patient at that office and that I was worth it, I honestly still want to cry because you have no idea what that meant to me then in that moment and you have no idea what it means to me now. Let’s just leave it then at this means so much more to me than I can say right now. Thank you. And a virtual hug <3
Some Reading And Viewing To Consider
When The Body Says No, Understanding The Stress-Disease Connection, (Nook Version) by Gabor Mate, M.D.
So, I think this book can pretty much be summed up by quoting the title of a post I wrote approximately three years ago: “The Stress Will Mess You Up.” Released first in 2003, the author examines all of the many ways a high-stress life will cause your health to crash and burn. And high-stress is indeed the way we roll here at the Quiet Crisis Next Door. This connection is critical to understand especially as a caregiver with limited supports, because people in this position have to put a great deal of extra mental effort into dedicating stolen bits of time to protective self-care measures, whatever that looks like on an individual level. And protective measures can certainly help provide healing and/or prevention, as the author briefly examines in the final chapter.
I feel that when health care providers look at whether or not a condition might be caused by depression, anxiety, or high-stress, if they can check off the “yes” box, they far too often can treat the patient as if they are wasting precious time and medical resources. Nothing about giving a patient the impression that if only they could only just get their mental crap together better they wouldn’t be there is healing. Nothing. And yet, the fact remains that whatever is causing a person’s individual health challenges, a medical problem does indeed exist and no amount of “pull yourself up by the bootstraps” is going to magically make that go away. In fact, I think it may have the opposite effect. And, I know for me personally, I kind of feel like if anybody were dropped into my circumstances over the past several years and had to live every last bit of it, they wouldn’t have a thing left to say to me about how I should be holding myself together better…so I just let that slide off of me these days, and if you are in similar circumstances, I hope you can find a way to do that too.
And for those of you that are not a caregiver, I am sure we all know that there are many paths to a high-stress life. So I think it is important to heed the message of this book and do what you can to take care of yourself, which is why it is recommended reading.
A few months ago I committed to putting something together for our family showing my make up process. Totally didn’t get that done, and part of the boundaries I am putting up to protect the time I need to nurture my own health right now is to admit that I really don’t have the time to do that for the time being. In recommending both of these channels, I want you to know I am not telling you to embrace individual products they use, but to pay attention to the process. Products are a matter of personal preference and in some cases what you can afford. For example, I know some people swear by Too Faced Better Than Sex Mascara (certainly it is not I think) and IT Cosmetics Superhero Mascara (should have listened to Edna and said “no” to the cape in my opinion). They are both two of my least favorite mascaras because they leave me with a wretched amount of flaky fallout. And, you can achieve sometimes very nice results from lower price point products. The green eye shadow look this paragraph is wrapped around was achieved using BH. So, for family and friends, you can privately ask me for recommendations that fit your budget if you need that, but keep in mind that often the same product will work differently on different skin types, and sometimes there is a necessary process of trial and error for what works best for you.
And, as the above mentioned sweetheart from my allergist’s office pointed out, everyone seems to have a little bit of something different they do when it comes to technique. My eye prep routine for example is not only a bit different from anything I’ve seen on YouTube, it is specifically designed to allow me to pack on the shimmer, color, and metallics and have those last all day…even if I’m chasing Tony around for a few hours a day in the heat outside. Most of you don’t need the kind of durability or all day color saturation I want.
There are a lot of beauty YouTubers I watch who create content that I really enjoy, so in recommending these two channels I am not trying to discount anybody else, I am merely saying they are good places to start for family and friends that are wanting to learn some techniques. Both have tutorials for makeup application for different age groups, and this is important because techniques will often need to be adjusted the older a person gets. Rosaura’s playlist is in Spanish, just a heads up on that. And, for my sisters-in-law specifically, when you are done with that, some of you may vibe with Glitzy Fritzy more at the end of the day, so perhaps check out her channel if you feel like you want some extra resources.
I feel like I can not send any of you into the beauty world of YouTube without first recommending each of you also watch this. I love what Mr. Hoge says at the end of his talk, and I would hope each and every one of us could find a way to write this on our hearts and really feel it. He says, “Owning is choosing. Choose to accept your face. Choose to appreciate your face…Understand all the love, and the life, and the pain that is part of your face, that is the art of your face.” Makeup is an art to me, it is not a way to say that how I look without these products is not enough, nor should it be for each of you.
Tony grabbing his suckers at Bashas’, all photos by Ariana
The cashier at Bashas’ looked at me as she pulled Tony’s bag of suckers across the scanner and said, “I haven’t seen you guys in a while.” Her eyes crinkled around the corners, so I could see that she was smiling even though her mask covered much of her face. A whole year I thought, which felt like more than a while.
“We’ve been working on some things.” And we have been, a whole lot of things.
I’m not terribly surprised she remembers us. Over the past several years, we’ve done plenty of things that would make us memorable in just about every location we’ve ever tried to work with Tony in. Him puking or having an anxiety pee that flooded his newly changed diaper in the earlier years, causing me to scrub down the cart, my kiddo, and the floor. Me carrying him on my shoulders when I really needed to get something from a store that I couldn’t get on-line because he was scared and refused to go in. (The day Catzilla died, he shrieked and ripped out a small chunk of my hair because he was so upset I used this tactic to get him into a store, and then that really got us noticed because I squealed a bit in pain). Tony self-harming or briefly screaming if something happened to upset him. Me chasing him all over the place when he tried to flee because he was scared or wanted to play chase. Him trying to lick the cart handles, or touching every single thing on the shelves and counters. Him wanting to bang on empty shelves.
Many of the behaviors he has struggled with were things people could tolerate with some level of equanimity outside of a pandemic (even if they did think we looked a bit crazy in the doing). I did everything to limit them and we had certainly been working with Tony to completely eliminate them. And many challenges had been entirely eliminated before last March, which was when our local community started seeing some businesses and schools go into lockdown. He hasn’t puked someplace public in a few years and though we often have to rush him to the restroom if he’s feeling anxious, he hasn’t had a public potty related accident since he traded in diapers for underwear.
Tony & Emily, waiting to buy a bottle of water, still using the metronome (an NMT technique) to help with his emotional regulation in public.
But in a pandemic of this nature, I knew that not only would there be safety risks for our family from the remaining behaviors I was unable to accept taking, but that these behaviors would become upsetting to other members in our community because they would now perceive in them a possible risk to their own health. Aside from the obvious need to help him tolerate wearing a mask long enough to do something safely around others, we would need him to more completely control his urges to lick and touch everything.
The potential ramifications of having to completely kill Tony’s public therapy programs were a source of deep concern for me. I knew that he wasn’t going to stop growing during the time we were trying to help him resolve these behaviors outside of a public setting (though thankfully, his growth has slowed down), which could mean we would entirely loose the opportunity to help him move past these behaviors if he got too big to safely work with. And I knew it was possible that some of the skills he practiced and mastered in settings such as our home and the neighborhood streets might not generalize to a store environment.
I acknowledged the concerns and fears within myself, because I believe denying ones feelings the respect they deserve is always counterproductive and can often be harmful. And then, I started to plan what we could do to bring about an eventual resurrection of these programs (seeking as I did the input of Emily and Casandra, who have both worked with him in these environments and have first hand knowledge of what it is actually like to work directly with our son in this capacity).
The first thing I started working on was mask tolerance. Our son has a history of pretty extreme tactile defensiveness. This results from his sensory differences, as the nerves in his skin are over-responsive and produce pain signals for things that wouldn’t bother a typically functioning nervous system. What we began with was just putting the mask on and letting him take it off. Once that was well-tolerated, I began advancing by 2 and 3 second intervals until we got to a minute of tolerance, at which point I began advancing my 5 second intervals. The mask that he has ultimately been able to tolerate for the longest periods of time so far is made by Findyourmask on Etsy. They are super soft, and my son does best with soft things.
Walking in random directions to work on flexibility in Walmart, using his kindle so the he has something he can focus on that he enjoys if he gets overwhelmed. Tony, Emily, and I.
I began talking to Tony about the germs causing this pandemic, how sick many people were becoming from them, and that many people were dying. We talked about how he wouldn’t want to make his therapy friends that come in to work with him sick, and we focused on reminding him frequently every time we walked in the community. If he touched something, I immediately applied hand sanitizer and reminded him. I would randomly compliment him and give him skittles when he kept his hands off of things like lampposts and mailboxes. Tony often isn’t willing to control or change his behavior just because he’s been told no or that people won’t like it, but he will often try harder if he knows what he does could hurt someone he has a bond with.
We began doing extra community safety runs that involved getting out of the car, walking short distances practicing with the mask, and getting back in. These were described in a previous post, and were in part designed to help transition him into the expectation of needing to wear the mask in public.
When we first began trying to resurrect our public therapy programs, we started with just going in and out, because I wasn’t sure how much regression we would have in his ability to tolerate the heightened sensory components of public environments. I also knew that some of the changes brought about by the pandemic would startle him at first, and he would need time to adjust. And I always show him a picture of where we are going so he can prepare himself mentally.
We advanced this to planning a brief run into our local gas station to buy him a bottle of water. Since that was so well-tolerated, I decided we were going to aim for a brief trip into Bashas to get Tony some of his favorite suckers. We have worked extensively in that location, so I knew our little man would be more comfortable starting out there, and that the suckers were always near the cashiers so we could be in and out pretty quickly in case it wasn’t going well.
Target, working on walking flexibility, Emily holding his hand at check out to help him remember not to touch the counter.
He did phenomenal. I rarely have to prompt him to keep his mask on for any of these trips (though initially I used a timer to help him remember how long to keep the mask on, this has been faded out), and he’s trying much harder not to touch things (though I do still have to bust out the hand sanitizer sometimes because he looses the battle with his impulse control on that one).
The mask can come off when we are outside and most of the way to our car. Tony starting to take off his mask on the way to our car.
We have now expanded to other locations. We don’t always buy something, because I am trying to limit us to fifteen minutes or so in each store. His mask is more comfortable for him, but doesn’t provide the same level of protection an N95 would, so we are focusing mostly on walking around, not touching things, and keeping the mask on. We have begun the tolerance work for a mask with better filtration, and will see if we can get him to wear it for any length of time during our upcoming public therapy outings. I feel like this is critically important, especially since Governor Ducey’s new executive order in effect strikes down other local mask orders. The variants are here, the vaccines use isn’t widespread enough, and vaccines still aren’t safety rated for a kiddo his age. Protecting him remains a top priority, so our next goal is N95 tolerance before we bump up time or further increase our public activities. At this point, I’m sure he’ll be able to get there.
