Ariana's Posts

“What The Heart Wants…”

Other than fabulous makeup, that is 😉 Photos by Ariana

To be the mother of a child with profound disabilities is in many cases to wobble precariously along a thin ledge comprised of a great many sacrifices while trying not to completely loose yourself, yet feeling as if some days are still spent in free fall, searching for the person you could have been or wanted to be if things had happened differently. This past November, I sat down and pondered a far ranging list of what I currently wanted for myself that I considered to be doable. I examined my heart for each item on this list and asked myself what resonated most with my desires and nature, what would most provoke regrets if left undone.

As we have seen a reduction in Tony’s more physical behavioral challenges, I added a couple of items to the list that I knew would be by far the easiest to accomplish. Sometimes I like to tackle easier items on a goal list because it primes my system for success, and this is what I did here. Very few of the people reading this post will know this, but I had my nose pierced for five years, between the ages of 18 and 23. I loved my nose ring as it resonates deeply with my own personal aesthetic, but that type of piercing is not considered acceptable in our former church, so I had to remove it when I joined.

When I resigned my membership to that church, I was able to put back in all of my ear piercings, but the hole for my nose post had healed shut. I always preferred a dainty and more minimal stud there, so I imagine such a small hole didn’t stand a chance against such a moist environment and the encouragement of so many years. At the time, I considered a re-piercing, but felt like the level of support Tony still needed would have come with an increased risk of damage to the piercing or the nose. So I waited.

As I was trawling through the desires of my heart, that item easily floated to the surface. I knew our little man had progressed to the point where it could be safely and successfully managed. One other item was written above it: get a navel piercing. This item I never had, but always wanted. When I was younger, I cowered to all of the voices that got in my head telling me I was too big of a girl for that kind of piercing. And now, I’m a middle aged woman who experienced kidney failure and 5-6 pounds a day of fluid retention at the end of my only viable pregnancy. The fluid was packing on so fast, my skin was ripping and tearing in multiple places.

The skin on my stomach couldn’t be more trashed and I have no doubts how poorly our society views it in terms of attractiveness. And I really don’t care any more to listen to that. Nor do I have any space in my heart for arguments based on someone else’s version of what constitutes piety. Those may be someone else’s beliefs, and I can respect and honor someone’s rights to choose that for themselves, but those are not my beliefs. Thus, I will not defer to them in the choices I make for myself- nor do I consider myself morally less than for believing and choosing differently. This list is not, after all, a list for what makes other people happy- it is a list for what my heart wants in collaboration with my personal beliefs on morality and the divine.

So, last Friday, Hannah and I headed off to a local body piercing shop. I wasn’t sure if the extra skin I had on my stomach would prevent me from being a good candidate for a navel piercing, so I picked a shop that has a reputation for turning away naval piercings on the basis of anatomy that wouldn’t support long-term healing. My heart is still humming and glowing! I am thrilled to have my nose ring back, and I am enraptured with the belly button ring. Truly it is the piercing of my dreams, the sparkle of those crystal beads is meant to please my gaze.

If there is one thing more my heart could get connected to these piercings, it would be an overall societal difference in perspective as regards to the changes that can happen to a woman’s body as part of birth. None of us would be here without the sacrifices and sustaining life given and nourished in the body of a woman. I am not a woman prone to exhibitionist displays of my body, but I know very well if I wore a crop top in public exactly the type of shaming I could expect someone to possibly use in an attempt to modify my behavior and personal views of my body. I think rather we should honor these changes when they happen as we would honor any injury sustained in a battle, and not settle them as matters that effectively erase a woman’s perceived attractiveness. Or better yet, let us maybe define attractiveness as a matter of character and personality. Every last scar, every last fold of excess skin, was worth it because that was part of what it took to bring Hannah safely into the world, and it will forever be worth it to me.

Some things that my heart could have wanted as I wrote out that list seemed too far out of reach because they involve the combined choices of two, which seemingly placed them beyond grasping because of my perception of what the other person wanted. This past week gave my heart something far more precious than piercings, and it is a tender and unexpected joy. My sister and I have been estranged for many years now, though I will not be resurrecting my perspective on those happenings for any sort of blogging postmortem examination. I will stand vigil on that past with my keyboard and a metaphorical shovel because what my heart wants is peace and healing, and not anybody else trying to expose those happenings to their own opinions as regards to either of us.

This past Monday, she reached out to me and sent me a message on Etsy of all places, and I honor her for doing so. Those of you close to me know I keep a low profile on the internet in terms of my full name. But I had reviewed one item I had purchased on Etsy and it linked to my full name, which is how she found me there, and she was hoping that account would be linked to my current e-mail. I was crying so hard Andy thought someone had died, but truly, it is a happiness that sheds words like crusty scabs, having become superfluous, concealing what glows with new healing below.

My sister, Eowyn. Photo by Eowyn.

Eowyn was gracious enough to send me a picture yesterday when I asked her permission to briefly introduce her to the family and friends here. She is smart and funny, and it means the world to me that we are back in contact. I have always, always loved you so much Eowyn, and a relationship with you is always something my heart wants. Thank you for giving my heart a gift that eclipses everything else on that list.

Some other things on the list I wrote will take more time to actualize. I have career goals, personal growth goals, social goals. Goals that my heart wants, and goals that my heart plans to get. I don’t believe in making New Year’s resolutions per se, I tend to make goals and evaluate them as desired, hence, this list was crafted a couple of months ago. But being able to start off the New Year by giving my heart some things it really wanted feels so amazing, I can’t wait to cross other items off as the year beats on.

Ariana's Posts

January Gratitude & Some Reading

Nicole going above and beyond by helping me get the Alani Cotton Candy fizzy waters I am obsessed with because they were above my reach. Photo by Ariana.

To Nicole

These unsettling pandemic years have changed so many things, including when we were able to meet. Nearly a year you were a case manager for our son before we were able to finally work together in person, and yet you still always called to check in with us and make sure we were doing ok. I thank you for that. You will never know how much your enthusiasm to work with us once we were able to start getting together in real life has meant to me. I am thankful for the listening ear you have given me when things were hard, for your flexibility and understanding when we needed to change things for Tony, and for your eagerness to help out in any way possible when things weren’t going as planned for our family (i.e. that fridge delivery). Pieces of our son’s progress wouldn’t exist without the time you have contributed each week to work with us on generalizing his cooperation to others in public spaces, and it isn’t something you had to do. And there aren’t adequate descriptors for that depth of gratitude. Thank you.

Some Reading To Consider

The Importance of Our Time Perspective, by Rosemary K.M. Sword and Philip Zimbardo, Ph.D. (you can click this title for a link to the article if you choose to read it).

This is a quick read, though if you find the information intriguing or potentially useful, Zimbardo does have a full book (titled The Time Paradox) that goes into much greater depth. The authors contend that a person’s perspective on time and the events that transpire plays a critical role in mental health related matters, and in fact, Zimbardo markets this approach as being useful for depression and anxiety, as well as a cure of people experiencing symptoms of PTSD. Zimbardo and Sword posit that making conscious changes in how a person is viewing time can improve their quality of life and their mental health, and I can support that. However, I would contend that a person experiencing symptoms of PTSD may require a multi-faceted, multi-disciplinary approach to find a more healed state.

Having a good memory can be a gift and a curse, blessing when joyful memories abound, and keeping a person in a more tortured state of mind when they do not. Flashbacks are their own particular kind of hell, and even other types of negative memories can bring all of that misery into the present moment, destroying the ability to enjoy what is actually happening now. There was a period of time when someone would ask me about my brother or his death, for example, and I would have a series of vivid memories flashing through my mind. I wouldn’t even need to close my eyes to smell the dried pool of blood covering almost the entirety of my grandmother’s kitchen floor when the police released custody of the house back to our family. Even now, someone asking me something about my childhood can trigger a cascade of memories that I have to work hard to quickly staunch so they don’t turn into emotional quicksand. For me, I stopped being so easily controlled in the present by those past moments when I could create a separation and say to myself, “that was then, this is now…and right now, I’m safe.” And now it becomes a game of creating positive memories and making sure my mind focuses on those, dismissing the negative ones as quickly as possible. I find this a useful explanatory and introductory read in the benefits of controlling one’s time perspective, and again if you find you want more detail, you can move on to the book 🙂

Miniature by Sarah Biffin, 19th Century Artist Born with No Arms or Legs, Exceeds Estimates at Auction, by Nora McGreevy, writing for Smithsonian Magazine (you can click this title for a link to the article if you choose to read it).

I have taken art history classes before, and this woman was never discussed in them, and yet, if you read this article, it gives one the sense that her talent, life, and career certainly could and should have a place in those kinds of discussions. This article doesn’t show many images of her works, but if you Google her paintings, they are exquisite. So I wonder, does history only whisper about her because she was a woman, because she was disabled, or perhaps both? Hers is a story of perseverance and success in difficult circumstances at a period in time that made that all the more remarkable, which is why this article is recommended reading.

A Door Into Evermoor, by Kent Wayne

This is the first book in what is planned to be a YA fantasy series, and I ended up reading it because I had read some of the draft chapters on the author’s blog and found them to be very creative. I don’t often recommend fiction here, and in general I rarely review fiction. I find so much to be subjective and a matter of preference that on those rare occasions I do reviews these days, I prefer generally to do so based on content that can be evaluated on criteria that can be more objective. Yet I have already publicly reviewed this book on Goodreads (so I’m not going to rehash all of that here) because I did love it so much.

This is a fast paced book which might perhaps not appeal to someone who wants epic levels of detail or appreciates a slower story build up, and yet, I can also appreciate the faster pace as a woman who inwardly groaned reading Madame Bovary and thought, “do we really need detail about this guy’s boots squelching into manure for goodness sake?” For me, what especially delighted me about this book was that I couldn’t predict some of the plot points. I read a whole lot of books where I can see what’s behind the turning of so many pages well before I actually get there, so it made my day to be surprised in that way.

I also really loved that he created a strong female heroine who rescued the male lead at points. I think we need more stories that celebrate the strength a woman is capable of, and don’t just cast her as an accessory. If you were to read between the lines of all of my posts, you might very well guess that my personal motto is “I can slay my own dragons, thank you very much.” And I love seeing that kind of mentality in fictional female characters.

I do have to give a couple of content warnings. Not for the book, which I would feel comfortable recommending to any of my loved ones concerned about avoiding entertainment with sexuality or too much profanity. There are only a couple instances of swearing, and the content would otherwise be considered clean…there were female writers from my former church that put more description into their books when it came to a kiss. However, if you end up liking this book, you should be aware that some of his other books and blog content does have a very adult level of profanity and sexual references if that is something you prefer to avoid. That being noted in case it matters to you, I really loved this particular book and am looking forward to reading the rest of the series as he finishes them.

Ariana's Posts

Our Pandemic Public Therapy Progress Report

Tony smiling on our last public therapy trip with Miss Emily, we put his mask on just before we enter the store. all photos by Ariana

A couple of weekends ago, on our last public therapy trip with Emily as Tony’s hab therapist, he laughed, smiled, and flapped as we walked towards the door of our local Fry’s. When we first started our public therapy programs, I never would have expected to see him looking happy in that context. The best I had been hoping for was to achieve sufficient tolerance for us to accomplish what was needed.

We had to put our son’s public therapy programs on pause for the first several months of the pandemic while we worked on building up his tolerance for wearing masks. Our little man has a history of pretty intense tactile defensiveness which we have been working to improve via therapy since before he turned 2. For the mask, we had to start with putting it on and letting him take it off in home, and then we increased by two second intervals until he could tolerate that for two days in a row with at least 80% of the attempts at wearing, and once we were over a minute I increased the number of seconds for each increase, and we just worked up from there. After about 10 months, we were able to achieve enough mask tolerance to resume short trips into public places.

Once we were back in the stores, we found that the break had allowed him to become less rigid about directional flexibility, but we have had to deliberately make sure we vary doors entered and routes walked for every location so that he doesn’t revert to directional rigidity in these environments. All work in any medical setting is limited to his own visits because of the pandemic, though we are hoping sometime in the next couple of months to be allowed to take him into the hallways of the local elementary school to practice safety skills there.

And we’re having some impulse control wins also: he’s getting better at walking by ladders in stores without trying to climb them. RBT M & Tony.

We still have many things we need to achieve when it comes to our son’s ability to function in public spaces (like not trying to grab other people’s drinks from them or avoiding micromanaging how they’ve set up their carts). But as his tolerance has grown, we’ve been able to start to fade the use of the metronome (an NMT technique to promote emotional regulation and help maintain a steady walking gate when his sensory system is overloaded). I haven’t seen fear based eloping unless we’re in a medical setting this past year, though he will sometimes run or walk off to try and start a game of chase. We’ve been able to advance his communication skills from not just talking about what he wants in the store to having him label items he sees. And more importantly, we’ve been able to increase the number of people he’s working with in these settings so that he can generalize his cooperation.

What follows is going to be as series of pictures of some of the things we’ve been working on the past few months. We do public therapy programs in both hab and ABA therapies. Most of our trips are just Tony, a therapist, and myself. One trip every month or two involves the oversight of the ABA clinical supervision team.

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Community Safety Progress Presents

Tony, sitting and resting after having asked permission on his AAC during a recent community safety walk, all photos by Ariana

Hannah and I put up the outside Christmas lights by ourselves this year, and so Tony needed to accompany us up front. Historically, any sort of outside task required multiple (you should read that as every couple of minutes at least) sprints chasing Tony down as he laughingly ran out of our yard. But when we put up the lights this year, my running shoes weren’t needed because when I asked him to stay he did. A couple weeks ago, Casandra dropped her phone somewhere along our community safety route, and we needed Tony to cooperate with a complete route and plan change so we could retrace our steps, searching. And he did. Just six months ago, he absolutely would not have. His cooperation when others ask him to “stop” during walks reached a high enough percentage to where that goal could be mastered out.

These are the types of progress presents we need, the type of skills we need him to acquire to be able to work safely in public spaces with others, and the reason why I place so much emphasis time wise on our little man’s community safety goals. Slowly but surely, with a lot of hard work from everybody involved, we are slowly starting to pile up a stack of essential skills that will bring even further future gifts to Tony and our family.

Tony looking at the pool longingly on a walk he did with just me where he asked very nicely on his AAC to walk across the street to it. Most walks I tell him no, but sometimes we go if there is a request without pushing.

We have also been able to see the degree to which Tony understands and will modify his behavior as long as the consequences remain clearly connected to those actions. Those of you who have been reading with us for a while may remember that we had to take one of Tony’s favorite walking routes off of our community safety rotation for the summer months because he was pushing too much towards the neighborhood pool, and where I was at on my POTS journey at the time, I was concerned I wouldn’t be able to keep him safe on that route. I made sure to explain the reasoning that route was no longer allowed multiple times when it was put on hold. We reintroduced that route as temperatures cooled down, and we haven’t had a single episode of pushing in regards to a boundary I have set about the pool. He understood, and worked hard to control his temper…and for the sake of any future Tony might have, there can be no greater gift than strengthening his ability to do that.

Sometimes we still have to set limits on what gets done because of my health. I got my COVID booster last Friday (I went with Moderna this time), and I’m not sure whether it was the localized allergic reaction or the small increase in my body temperature, but I had a POTS flare up. By Saturday evening, my sitting heart rate was floating between 120 and 130. Fortunately I have learned a lot about what to do to take care of myself when this happens, and as of this morning I am pretty much back to my new normal, which included 15 minutes on my rower right after waking up. But sometimes we have to cancel walks entirely or modify his routes so that we can manage both my health and his safety appropriately.

For the rest of the post, I’m just going to put up a lot of pictures of the types of things we are currently working on with his community safety programs. We are soon to be adding a goal where he turns around at the request of the therapist instead of me, and we are advancing the number of directional changes expected during each route. And next week, we have another gift…a new hab therapist who is going to come spend some time working with Tony and I. If she ends up feeling like our circumstances are a good fit for her, we could have another person to help our son generalize these skills with, and that is the most critical component needed for of all of this.

Nicole & Tony. She’s been helping generalize his cooperation skills in stores for the past few months.

Even though I continue to do his community safety walks by myself as needed, I’m kind of like a place holder. I keep us from loosing ground and I push his overall skills forward within the family context, but I cannot do a thing on my own to increase his ability to generalize working with others. We remain grateful to everyone on the therapy team who has been involved with that, and I want to also note my gratitude for Nicole, who replaced J.N. on the therapy team, and meets with us once a week to help Tony generalize practicing with others. She participated in community safety in the early fall, but she won’t show up in any of the pictures until our public therapy post next week. But she is an important part of the successes he has been having in generalizing cooperation to others, so I want to make sure she is mentioned and credited for that.

And this is what we are working towards: more smiles and happiness for everyone in public, and more functional communication replacing worrisome behaviors related to his struggles with risk assessment, emotional regulation, and cooperation.

Ariana's Posts

When The Stress Won’t Stop

One new screensaver already broken from another accident with Tony’s AAC on a community safety walk. All photos by Ariana.

I had just fled my parents’ bedroom when I heard the click, and then my mother scream– “He’s got a gun, run!”

My mother’s fourth (and current) husband, had flown into a rage, flinging and destroying items (a boombox became the first casualty) because I wouldn’t say I loved him when he asked if I did. I had hesitated a matter of milliseconds when he asked, but the tightening of his face told me my hesitation had already betrayed my answer, and so I felt that I might as well just verbally commit. I wasn’t feeling that particular emotion for a man who had physically restrained me and held knives under my legs, forcing me to exercise because he thought I was just too damn fat, telling me that if I didn’t hold the position as long as he thought I should I was going to get cut. The cruel irony of the actions of a man who would go on to tell me things like “someday, you’ll be fat, 40, unable to change a light bulb, and nobody is ever going to want you,” cannot be understood unless you could visualize him as he was then. Since you cannot, you will simply have to take my word for it when I tell you that he himself was quite overweight at the time.

I was barefoot, and only months past a surgery on my birth defect, but I hit that asphalt outside of our house running as fast as I could. I didn’t turn to look around me, but I could hear both my mother and my sister running after me as I headed across the street to a friend’s house. Pounding on the door, frantically calling the police as her mom stood looking anxiously from us to the door, realizing in a detached sort of way that I had actually run, and the doctor who performed my surgery had said I probably wouldn’t be able to after the surgery.

By the time the police came, my stepfather had driven off, knowing (because this wasn’t the first time he’d flipped out with a gun at Christmas time) that one of us had probably called the cops. And because it sadly wasn’t the first time, I had only the faintest flicker of a hope that maybe my mother would actually choose to leave. I had already seen her walk back to my siblings and I a few years earlier as we stood in the melting snow with our police escort, sent with us from the domestic violence shelter in Sierra Vista to collect our stuff, as she told us we’d be going in without the police and she’d be dropping all charges. He’d gotten on his knees and apologized she told us, and she was sure he meant it…

The responding police officers on this second occasion left quickly since he was no longer there, telling us to grab a few items as fast as we could and leave. But my mom decided that wasn’t how she wanted to proceed. After first driving us on a futile visit to my dad asking for money and support, she drove us back and directed us to pack. My sister and I rapidly threw stuff in trash bags, I probably took less than five minutes to clear the most important things out of my room. And then we waited. And waited. And waited…because my mom just was moving so painfully slow. I suspected she wanted us to be there when he got home. I can’t even say how long it was, but it was definitely too long. I rushed into my sister’s room when I heard my stepfather’s truck driving up to the house, and my mother followed me into the room, told us to stay in that room, handed me a 22, and told me if he walked through the door at any point in the night, things hadn’t gone well and to shoot him. And then, after a prolonged bout of arguing, she got into bed with him.

My sister sat next to me in her room shaking most of the night, as I stared at the door holding the gun and waiting. In the morning, I was finally able to get ahold of my brother, so as the raised voices of my mother and stepfather crashed through the house, my sister and I grabbed our trash bags, climbed out a window in the back of the house, and walked to the Walgreens across the street. I used the only bit of money I had to buy us a loaf of bread and a can of Vienna sausages, which we ate as we hid out in an alley all day waiting for my brother.

I have had allergy problems my entire life. But that year…it was definitely wow, I had never seen a flair up of reactions with anything approaching that intensity. My pediatrician seemed regularly worried, and given how sick I often was, I imagine nearly 30 years later that she probably still remembers me. One low light, my tear ducts spending the better part of a year swelling shut, was undoubtedly memorable…I know it certainly was for me!

In retrospect, I realize that the stress was just pouring rocket fuel on a system which already had many environmental and food sensitivities. And there was nothing I could do to make the stress stop. That was what my life was like, and I couldn’t avoid it.

My parents don’t have space in my life right now to represent their side of things, so in the interest of fairness I will tell you that they feel they were just parents doing the best they could (and certainly there are people who go through worse in their childhoods), that I get upset about things I shouldn’t, and that I am mentally unstable. My sister currently believes that since they are family, even if the actions were messed up, that relationship makes everything that happened OK.

I will leave each of you to decide how you want to land on those issues. I personally see myself as mentally resilient and strong, and I don’t want to make space personally to give credence to that kind of gaslighting in my life…because I’m a grown woman who values herself and quite frankly I don’t have to- and I shouldn’t have to. And I would want anybody who is in similar circumstances to know that some things should never have to be OK, I don’t care who’s doing them. I (and you) are worth so much more than that.

Everything about my life is different now. I live in a home where I am safe, loved, and treated gently. Sometimes the holidays can be hard for me, but I do everything I can to fill them with happy traditions. Going with Hannah to the Nutcracker. Building gingerbread houses (although this year we’re doing a chocolate chip cookie house). Zoolights. Putting up our Christmas tree Thanksgiving weekend. Driving around and looking at Christmas lights.

And yet, sometimes, as caregivers, the happenings may be different, but still we can’t stop the stress, because what is happening just can’t be stopped. And it makes every health matter worse. I feel confident the high levels of stress I was experiencing over the last few years helped hand me every health challenge I have been working my way through with the flair ups in my allergies and the POTS this past year. And, in some ways, I still can’t make so much of it stop.

When that is the case, I do what I can to put everything on pause I can. If I feel like it would help my stress level to make paper stars instead of folding laundry, the laundry sits unfolded. And sits. And keeps on sitting if need be. I don’t have anybody helping me make these comparatively more trivial chores happen, and I don’t care enough to add to my stress to make sure that they do when I have to pull some sort of pressure off of my system. I wear makeup that brings me joy every day, and I don’t limit the glitter when the mood strikes because it’s like sprinkling joy on my soul. And I try to take time to heal myself through my art. Poetry has always been a favorite playground for my emotions, and molding them, words can become Play-Doh, porcelain, or Picasso. I love free verse, but not every poem I write is structured the same. I like sculpting different things in my playground, so to speak. My poem “So Selfish”, for example, has rhyming couplets, with each line having the same number of syllables, because I wanted the rhythm to slam my point home. “So selfish they say/ she chose her own way…”

I am sewing a quilt from my old leggings by hand because I find the process almost meditative (Tony likes how soft my leggings are, so it’s going to be a present for him). If I feel like I need to dance instead of clocking in and doing hab hours, you know what, I’m doing that, because right now Tony needs his mom to be OK more than he needs all 30 of those hours officially accounted for on a ledger. I’m already doing the community safety off of the clock so I can block if he tries to do something dangerous, so he’s still getting the most important programs done every day.

Jinny Beyer I am not when it comes to the caliber of this project, but Tony won’t care about that…

And, as always, I pay attention to where my emotions are at. I feel things deeply, and I get emotionally invested in music, books, movies…I can take on the feelings in art so easily. So when things are harder for me with my stress level, I have learned to pick content that emotes a little more sunshine while that is needed.

And when I need to, I am learning to say “no” when it comes to taking something on.

And I think maybe other caregivers out there might need to hear someone say it’s OK to do all of that, so that is what I am saying here. Perhaps you might not be needed to make some of your loved one’s therapy programs work, but you’re still needed just as much. And sometimes, when the stress won’t stop and you can’t make any of it seem better than it is because reality will not be denied no matter how much you meditate, all you can do is take control of what you can, practice accepting the rest of it, and do what you can to improve the things that you can. And maybe the stress won’t stop, but it can slow things down just enough.

And when all else fails, find joy in a beautiful sunset…
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Navigating The Stress Of Allergies, POTS, And All Things Health & Being Needed On The Therapy Team

No matter how many therapists are along for the ride, in public we’re dead in the water with out me. BCBA2, Tony, BCBA1 & RBT M. All photos by Ariana

For nearly a year now, I have been bobbing up and down on the waves of life, trying not to get swamped or washed overboard as I navigated managing my health and maintaining the active role I must play in all of Tony’s therapy programs that transpire outside of our house. These programs are essential to what we are trying to achieve when it comes to his ability to function safely in the community, and because Tony is an individual who will still frequently try to use the force and weight of his body to get what he wants, they would crash upon circumstantial rocks and cease to exit without me. Legally, in Arizona, none of his providers can block him without special certifications, and understandably, the company that provides his ABA services doesn’t want to take on that kind of liability even if they had a therapist available who had that extra training. Which means I am always a necessary (and unpaid) member of the therapy team when it comes to any therapy activity outside of our house.

Emotionally, getting through the past three years or so was already like trying to safely pass through the edges of one maelstrom after another. I managed to get through a lot of heartache without being ripped apart, but I was already limping towards what I thought was a safe, healing harbor while just barely holding everyone on this ship together when I went into anaphylaxis this past January and then developed POTS (postural orthostatic tachycardia syndrome). The timing was scary enough without the ramifications of what it could mean for everything I hoped to see for Tony and our family. Considering that made it absolutely terrifying with the potential for heartbreak.

Even at the time, as I reflected with my current allergy team, I realized my body was trying to give me signs of new food allergies for a while. Swelling in my lymph nodes, (but as a chronic allergy sufferer, that’s often just a thing even if nothing has changed) and some new rashes with small hives. Ok, a person might think that should have been something that would have alerted me, but honestly, there are so many things that cause contact dermatitis with rashes and hives for me, it’s really hard for me to tell if something was the food or something I touched. My food allergies had gone through an unusually long period of stability, so I didn’t cast a net as far as I should in looking for answers. And there I was this past January, recognizing my own folly in not regularly visiting an allergist given my history. Now it feels like I’m there all the time comparatively speaking, but realistically, that’s what needed to happen.

Initially, my new allergist was thinking I might have mastocytosis. I felt like I won the lottery when testing ruled that out, and while being told mast cell activation syndrome was quite likely what I was dealing with felt like a substantial upgrade, dealing with the reality of reacting with hives to more things than I have in a really long time hasn’t been the greatest. The list of things I can’t touch right now because my body is reacting still keeps growing, though the pace is slowing down considerably. My allergist is currently recommending Xolair, and I will probably meet with him sometime after Christmas to talk about it.

Medications are never my first choice, because I have a history of reacting to them- sometimes quite dramatically. So it’s not something I am willing to start without a more involved conversation about the reasoning, the pros, and the cons. I did kind of compromise with him on the amount of antihistamine I’m agreeing to take (my allergist has recommended more than I’m currently taking). I realized I was probably cold all of the time this past spring and the first part of summer because my body was producing a lot of adrenaline trying to fight off everything that wasn’t making my system happy, and that stopped once I went back on the Allegra and two Vistaril. For me, that low a dose of Vistaril isn’t enough to make me sleepy, but with the Allegra it’s enough to reduce (but not entirely eliminate) my current allergy symptoms. More antihistamine makes it harder for me to mentally focus on everything I need to, so that’s about as much as I’m willing to take outside of trying to manage an episode of anaphylaxis.

I have had to replace my morning coffee with Crio Brew, because POTS has made me much more sensitive to caffeine.

Developing POTS was like looking at the prospect of shipwrecking every single day. Being physically strong enough to keep Tony safe as we work through his more challenging public behaviors isn’t just a matter of muscles. A heart rate going up too high, too fast with standing or physical activity has the potential to rip the mast off our proverbial ship and leave us floating adrift without an ability to move forward or safely carry Tony’s world on our own. The fear that initially harpooned through me when those symptoms hit was intense. I felt a lot of frustration initially in the diagnosis process because some medical providers wanted to look at what was going on in my world and say it was just anxiety…and I’d have to say, look, my heart rate is staying in the 90s even when I’m laying down sleeping right now. My fitbit tells me so, and that’s not something you see with anxiety, sorry.

While finding out POTS was part of the equation wasn’t nearly as bad as some other things could have been, when you have a history of anaphylaxis like I do, beta blockers aren’t recommended, Corlanor is horribly expensive (and I have resting heart rates that regularly dip into the fifties and occasionally even lower because I was actually pretty fit when this happened so it wouldn’t even be safe for me to take)…so that left me with lifestyle changes and no quick fixes except getting off any medications exacerbating matters with my heart rate. I’ve been doing every thing I can, but the process has been slow.

Yesterday Tony and I walked nearly two miles up the hill where we live to a grocery store, used their bathroom, and jogged part of the way back (one of the gifts of having a kiddo with extreme ADHD is he definitely has the energy to do this and so much more). The happiness I felt at being able to do that is blinding enough that any articulation I attempt could never do the sensation justice. I can jog longer before my heart rate rises too much right now if it’s down hill. I have to carefully strategize increases in my physical activity level, because I still haven’t regained full normalcy, though I am certainly able to do enough to do everything that is needed to take care of my children and manage my role in Tony’s therapy programs. Sometimes emotionally I feel the grieving and the loss for the capabilities that I want (right now, I’m only up to 13 minutes straight on my rower for example before I need to take a break because of my heart rate), but I try to spend most of my time oriented towards how thankful I am that my autonomic nervous system’s ability to regulate my standing and moving heart rate has improved enough to allow me to do everything that is needful.

Getting to meet with my good friend Gena regularly for breakfast since being vaccinated has been a true lighthouse cutting through a whole lot of darkness in my life, and I would want her every day to know what that has meant to me. But I’ve also been going out and making new friends recently, and I’ve been chatting with people on-line. To everyone that has taken the time to interact with me that way: thank you. You have helped mend my emotional boat, helped me to stay fit enough to sail through life’s other challenges. I’ve been making decisions about where I want to navigate my own ship going forward, and being recovered enough to have those options is a glorious gift.

As our son improves in his ability to generalize cooperation to others, I am hoping someday soon to sail our therapy skills ship into a dock where someone else can become a copilot, taking charge of helping Tony advance with his public safety skills. But until then, I will still be needing to do everything I can to balance out and manage the stress of navigating a trickier course through my own health and his needs as we move forward together.

Ariana's Posts

December Gratitude & Some Reading

Tony & Emily holding hands, March 20, 2021. All photos by Ariana.

To Emily, For Everything Unwritten

Oh my beautiful friend, a treasured member of the family of my heart, some might wonder what more I could possibly add to the notes I’ve already written you here. Yet you and I both know there is always so much more behind every post and every memory I’ve shared. As you prepare to finally move on after so many years of working with Tony in some capacity on our therapy team, you already know I will forever be grateful that we met all those years ago when you were interning under our little man’s first music therapist.

My debt is not just for what you have done for him. For standing by our family in a dark time, for coming back to work some of Tony’s hab hours this past year while you were committed to and working other jobs, for patiently hearing the pain in my heart, for helping to patch those wounded pieces back together again, for caring about what happened to me when I needed it most, and for everything unwritten- thank you.

To Nancy

My friend, it made my day when you asked to use some of my makeup pictures as the inspiration for the makeup look for one of the characters in the Christmas play you are directing. Thank you so much…I know as much as you love quality costuming in theater, that was a huge compliment!

Swatching duochromes on the knuckles makes it easier to capture the shifts in photos, shimmers Sigil Inspired, and those are my real sunspots and I am not editing those out!

A Brief Note:

My fabulous sisters-in-law will already know this, but sometime in the next month, I’m going to be getting an Instagram account. I really haven’t decided at this point whether or not I will link it up to the blog or not, but it is a possibility that I will just be sending out a private notification to current friends and family members. Much of the content is going revolve around my makeup, a few tips every now and then about how I am doing something and why, whatever crafts I’m working on (and currently it’s a hand sewn quilt using some of my worn out leggings), and general life moments. There are a few things everyone should be aware of when it comes to how I’m planning on running my Instagram:

1) I am not a “cool” and hip person in real life, and I’m not even going to try to be on Insta.

Exhibit A: My real life hair and clothes…trends just aren’t my thing, I like what I like.

2) While I will give you my thoughts on the brands I’m using, nobody should expect me to be trying to keep up with purchasing all of the latest releases, because that isn’t a treadmill I want to be on. I like to buy most of my makeup when it goes on sale, and Black Friday has some of the best makeup sales of the year. So, I’m not always going to be speaking to or about the latest releases. As colorful as some of my makeup looks are, that’s really how I go around the community every single day unless I am sick. I also will not be using filters, photo shop, or tagging the brands themselves. My goal is to give family and friends a window into what I’m doing, not make the brands look good…not even the ones I love. And, I think the filtering doesn’t help anyone’s mental health.

3) Some of the brands I love working with are controversial (i.e. Jeffree Star Cosmetics). I will not be keeping that off-line. I don’t believe in cancel culture…for me, it’s about the quality of the makeup and not the person or the drama behind it. If I choose to stop shopping somewhere, it’s because they’ve made a serious breach with me personally as a customer (and Jeffree’s team never has). This is something anybody should be aware of upfront in case it is incredibly important to them not to hear about brands they personally don’t find palatable.

Exhibit B: My real life makeup looks.

Some Reading To Consider:

Twilight Man: Love And Ruin In The Shadows Of Hollywood And The Clark Empire, by Liz Brown.

When this book was released this past May, one news outlet after another was highlighting through coverage of the ongoing nightmare of Britney Spears a dark and horrible truth: that sometimes, conservatorships and guardianships can be abused and unnecessary. And this book brings to life yet another real life example in the tragic circumstances of Harrison Post, who died in 1946 after an unsuccessful battle to gain back the money that had been swindled from him by his own sister when he was placed under such an arrangement.

There is little actual documentation about much of what happened, and what little there is could easily comprise a book a tenth the size of what Brown has delivered. But she has chosen to include a more sprawling history to set the stage of events, making this also in some ways a historical account in regards to both W.A. Clark, an insanely wealth copper magnate, and his son, Will (who was the source of Harrison’s wealth). Owing to the laws and mores of the time, Will was a very closeted gay man…and Harrison, who was listed for many years as being his secretary, was instead his paramour.

Perhaps if laws had been different they might have solemnized their relationship with the legitimacy of marriage, but that was not the time they lived in. The author gives certain details to support the significance of the relationship, such as Harrison’s face being used and immortalized 13 times as the visage of men depicted in a ceiling painting commissioned by Will Clark and that a trust fund with significant money was established for him. In 1934 (near the time of Will Clark’s death) Harrison suffered a stroke, and his opportunistic sister seized upon this temporary infirmity to have him declared incompetent, crack his trust fund, sell his properties, and flee with her appropriately named husband (Mr. Crooks) to Mexico.

Guardianships are sometimes necessary. Every parent of an individual with significant disabilities knows this. But the use of them can never be taken lightly. Sometimes they are used by predatory people to take advantage of a temporary condition to line their own coffers, and this book is a cautionary tale about one of the attendant dangers of wealth and fame. With disabilities, sometimes these arrangements can be overused to inappropriately deprive a person of freedoms within a community for things they are able to do themselves. I think we can see in Ms. Spears case regarding individuals with wealth that perhaps the best solution to this might be to assign an oversight committee made entirely of volunteers of that individual’s fan base or local community members who don’t have any ability to profit from the arrangement, but have some sort of appreciation for the person as an artist, philanthropist, etc. When it comes to disabilities, a panel of disabilities advocates might be best. Regardless, I think this book is an important read because it places another spotlight on the need to improve the oversight of these legal arrangements so that the people placed in them are protected from abuse and predation.

Ariana's Posts

The Gratitude of Healing: A Poem & Some Commentary

Photo by Hannah

For me, there are times when I want a certain type of punctuation mark heralding the finality of a chapter in my life, and, in the ciphers of my heart, sometimes only a poem can suffice. In choosing to share this particular poem, I make no claims that it is the best I have written, only that it gives voice to the unbridled joy in finding a moment of inner healing through placing one of those marks. As a voice, it is a hinting shadow. But it is still my voice, and as this is a poem I am choosing to place anywhere publicly accessible, I did register a copyright on it…so no poaching! Unless of course, you want to get spanked down in a court of law…in which case, proceed at your own risk 😀

Rising Free

The bereft filed in, shrouding in white so proper
veils for trampled scenes, 
mocking stolen dreams
with piety that never cried.

You mourned me there-
I mourned you where?
On the cracked parched pitch of your scene.
When you clutched deep your unknowing. 
As you snipped and clipped, just past for the trash.

Are the seats lined with miss me nots-
or forget me plots?
A eulogy of falling,
a funeral for what could not be seen.

Who wrote those invites?
That casket never held me,
dancing, singing, winging, rising-
alive and free, no burial rot to fleece.

Some Commentary

My whole life, people have been telling me what they wanted to see in my behavior and lifestyle- what they expected me to do with my one and only life. I am sure each of you can relate in some way. I have come to feel that in far too many of these external pressures, the expectations people were seeking to supplant my wishes with in a desire to validate their own views were a considerable overreach. My life. My body. My education. My relationships. My sexuality. My career. Mine…Not anybody else’s. And I gave people authority over my life and my decisions that they never should have had. And that part is on me.

Realizing that I can take that power back, that I can block out all of those pressures and say to someone “hey, that’s great if that’s what you want for you, but it’s not what I want for me,” and just move on with what I want to do for me within my own value system was one of the most healing moments I have ever experienced. And it is a moment of deep gratitude and joy to arrive at.

And I think that’s a place Tony has dwelt in since birth. I had to laugh this morning, for example, when he was saying “hi” to the newest member of our therapy team. I have been telling him for months now that he doesn’t need to ask what someone’s name is if he already knows it. I told him that the first time he used that button with someone he already knew, and he seems to have decided that my expectations he conform with this communication norm are an overreach. He throws that question in every time he greets someone ever since I first tried to clarify what I consider the appropriate use. I have even moved that option to a different page, and he will navigate through is device until he finds it, catch my eye with a faintly visible smirk as he’s asking a person’s name, and then move on to asking how they are and then greeting them by the name he already knows.

Of course, many people wouldn’t consider expecting Tony to use the accepted wording and usage of language to be an overreach. But then, nobody who seeks to influence another ever does, and distinguishing what actually is undue influence and what isn’t can be a challenge and is often defined by the social views of the community. I think about this often when I am deciding which therapy goals to focus on for Tony…how much of what I want is necessary to function as part of the community group, and how much is just an overreach where I’m telling him he should do things in a way I would personally feel more comfortable?

Because as it is for me, so it is for him: this is his one and only life. And I don’t want him to need to find the gratitude of healing as he shifts through the embers of resentment that can char a soul constantly being heated in the forge of what others want.

Ariana's Posts

Our Current In-Home ABA Programs: A Brief Overview

BCBA1 observing during an observational overlap with Casandra. All photos by Ariana

Currently, our ABA programs are focused on skills that are being both practiced inside and outside of the home. This week, I am going to give a brief overview of the in-home therapy programs. Although everything we are working on matters, the bulk of our time is spent working on skills necessary for Tony to function safely outside of the home…so those areas of his programs are going to get multiple posts in December. Many of you have heard me say this before, but it won’t matter to anybody what he can do or what he knows if he can’t acquire certain safety skills in the public domain.

One of the biggest challenges we have in any setting is the overall lack of joint attention our little man has. Joint attention is essential for learning many things, and it is necessary for a conversation that lasts longer than a request for a particular item. A little over three years ago, when our son was first diagnosed with ADHD, his developmental pediatrician and I hoped that the medications would help increase his attention span. Unfortunately, that really wasn’t a benefit that materialized for us, so we are needing to target the development of joint attention therapeutically.

Initially the task was just to get Tony to request a fun activity that he could do with the therapist and then make eye contact. We are currently working on the next step of that, which is a three point gaze in which he looks at both the therapist and then the item being used. For this therapy goal, we are starting with preferred activities because he is most willing to cooperate and practice the appropriate skills with those.

Another critical program revolves around tolerance for being told “no” and teaching Tony an acceptable tolerance response. When the anonymous BCBA and I consulted about this need, this person gave us a recommendation for a program that initially began with directing our son to say “OK” on his AAC device. The request to give that as a response was given randomly across all of his activities, with the goal of helping him to feel like it was an automatic response. Initially he had to be shown and verbally prompted every time. Now when he is asked to say “OK,” he will hit this button on his speech device independently. I worked on teaching to him what “OK” meant, because typically he prefers to use “yes” and “no.”

We have now advanced this program to giving him a “no” for 25% of his requests in-home during a therapy session. What we are looking for is for him to either say “OK” or to respond calmly without pushing towards the item desired, having a tantrum, or self-harming behaviors. As his tolerance for this grows, we will increase the percentage of “no’s” he’s getting and move to have therapists give him a “no” in the community. Right now, I’m the only one who’s got a chance of giving Tony a “no” in public and having him tolerate it calmly…but as we’ve discussed, even for me that’s iffy. But as a mom, sometimes a “no” must be given, and what we are trying to do is teach safe responses and reactions when his first impulse is to try and push his way to what he wants.

We are also, as I mentioned last week, working on helping Tony tolerate tooth brushing and learn some self-brushing skills. Because of the deficits he has in motor planning, we are having to teach one plane of one tooth quadrant at a time, and it can take a few weeks for him to master each plane. We are also working on asking him to keep his clothes (and sometimes a mask) on in-home for longer periods of time when a therapist is present.

Tony also has an ongoing program for labeling certain items. The goal is to integrate these items in ways that expand his conversational or requesting skills. So an example of how we are implementing this is to pick an item, such as a straw, that we want him to label with others independently. Once he has achieved mastery, we prompt him to ask for it as an item he needs to drink his smoothie. The straw is withheld until he asks. After the first couple of times, Tony doesn’t need the prompt any longer, and he will move automatically to independently request the missing item. We will do this for clothing items when we need to go out in public, any item that starts out being taught under tacting (labeling).

While we are running the other programs in-home, we have items we have asked him not to touch that are spread about the living room, and as mentioned in a previous post, he’s rewarded with skittles every time he refrains from touching the items for the designated time period. We also have programs for imitation and cooperating with instructions given by someone who is not me. For the cooperation, we started with tasks he felt happier about, moved on to tasks he felt neutral about, and now Casandra is focusing on asking him to cooperate with requests for things he doesn’t really want to do.

For the new ABA RBT that is working in the mornings, she is performing all of the same programs with Tony, because what he needs most is practicing generalizing tasks with others. One of the more challenging deficits for our son is the difficulty he has in generalization. He can learn a skill under the direction of one person, and be unwilling or unable to do it in a new environment or for a different person. Typically it will take him attempting the task for several different people before he will exhibit first time cooperation with something he has learned for an entirely new to him person. However, for a new therapist, we make modifications initially to have that person ask him to cooperate with requests he prefers more initially and then advance him as tolerated.

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Meetings: The Foundation of our ABA Programs

ABA meeting in progress with the anonymous BCBA on the computer, all clinical supervision meetings were held on-line for most of the pandemic thus far. Casandra and Tony pictured, All photos by Ariana.

In Arizona, once a kiddo is diagnosed with a qualifying disability, they can apply for both the Arizona Long Term Care System (ALTCS) and Division of Developmental Disabilities (DDD) services. When Tony was diagnosed with level three Autism, we immediately applied for both services because the insurance we had at the time would not cover any therapies for individuals with Autism. At that point, genetic testing hadn’t been completed yet, but he was approved a few months before his third birthday on the basis of the extent of his delays as related to the diagnosis he was given.

Once an individual is approved for DDD, they are assigned a support services coordinator (SSC). The first SSC we had gave me a list of agencies that I could contact to find habilitative and ABA services. Pretty much every agency at that time had a wait list (one of the more popular local support agencies, SARC, had a wait list time of more than a year), but we were very blessed that we were only waiting a few months with the agency I chose. The wait list time can be a huge obstacle, because at that time DDD only authorized intensive habilition and ABA until age 5. A person could get an extension for a year (which we did) if their clinical supervisor submitted documentation justifying the ongoing medical necessity. But time on the wait list doesn’t extend the time services are approved for, so any time spent on a wait list is time that the individual wasn’t going to be getting those services. After the individual has reached either an end of their eligibility for the merged hab/ABA program at age 5 or 6 (if extended), they are usually transitioned to a reduced number of authorized habilitation hours. For Tony, ABA at that time had to be applied for and transitioned to the ALTCS portion of his benefits.

Once a family gets off the wait list (typically this happens when there is an opening on a clinical supervisor’s schedule and a therapist available in the family’s area), a clinical supervisor will come to the home and assess the individual with developmental disabilities to see how many hours of services they meet medical necessity for. For Tony, the recommendation was for 40 hours per week (though for the first two years, we were only able to find a therapist to cover 10 of those hours, and I did the other 30 unpaid because I understood how essential that was going to be for our little man). From that point on, there is a rotating set of monthly meetings that are mandatory for the process.

Every three months we meet with our son’s SSC to discuss his ongoing needs and his current therapy services. Typically when a kiddo ages out of the merged hab/ABA program, their habilitative hours don’t have a BCBA as the clinical supervisor. For Tony, because he is still receiving ABA separately from his hab, his ABA clinical supervisory team has been gracious enough to join us with those meetings to discuss Tony’s ongoing medical necessity for habilitative hours.

All DDD planning meetings have been on-line since the start of the pandemic, screenshot from a recent planning meeting, Tony’s current SSC has been blocked out in this screenshot to protect her privacy. BCBA1 edited out to protect privacy.

We have one planning meeting a month that includes myself, all members of the clinical supervisory team, and any available therapists that are under their supervision. In planning meetings, we discuss Tony’s programs, the progress he has made, what our challenges are, and any new programs we want to implement. Something I always loved about how Stephanie handled these meetings when she was clinical supervisor is that she would spend time telling Tony all of the things he was doing well. BCBA1 also takes time to recognize the positives going on, and I think that is so important for him and to me.

Tony saying “hi” to everyone on AAC, the anonymous BCBA is on the computer watching. BCBA1, who was the assistant clinical supervisor at the time these pictures were taken, is shown discussing one of the therapy targets with the BCBA, and in the third picture we are getting ready for a meeting to start.

We have one meeting each month that is a parent training meeting, where a member of the clinical supervision goes with me and a therapist to observe what I am doing for my piece of the therapy programs and provide feedback to ensure that I am applying appropriate therapeutic techniques with 100% fidelity. And finally, additional overlap meetings are required for any therapist working with Tony who is a registered behavioral therapist (RBT). This level of therapist must be directly observed providing therapy by a BCBA for a certain percentage of the hours worked each month.

Parent training meeting in progress during the first pic, the second Tony is doing one of his tacting exercises under supervision, and in the third BCBA1 is observing his tooth brushing program, which has components for both tolerating others brushing and learning self-brushing skills.

Truthfully, all of this comes with a whole lot of meetings. The process can seem overwhelming and somewhat invasive for the deeply private. It wasn’t easy at first constantly having people outside of friends or family in our home. And it does make it pretty impossible for everybody living in the household to feel like home is always that sacred space to relax in. But these meetings are the foundation of the therapy process that has been helping our son move forward, and so they will continue as long as they are needed.