Ariana's Posts

September Gratitude & Some Reading

Posted on by Ariana
Tony waiting patiently last week at a different office for his pediatrician, one he’s never been in before. All photos by Ariana

Tony

I want each of you to think about what it would be like to spend 12-13 hours a day working on the subjects you were worst at- the ones you struggled to understand and filled you with dislike at best, dread at worst. And then you have to live through the feelings that come with knowing these things aren’t struggles for most people…and yes, our son absolutely does recognize that. That is what the experience of living can feel like for an individual with Tony’s level of developmental delays. I could not be more grateful and more proud of the fact that Tony has worked so hard on things he hates to do so much. Any progress we have takes more than just the therapists or my time and work…it takes Tony partnering with us. And I am thankful every day he is my son.

A Quick-ish Note

A few months ago, I tried to do a therapy restructuring that would have resulted in me having a little bit more personal time. And then almost immediately got handed in a way some circumstances that necessitated me personally taking on all 30 of our son’s weekly hab hours…which means my combined therapy schedule with him is still about 60 hours a week. My brain is just melty at this point, literally my emotions are in “The Kill” zone, rasping out “what if I wanted to fight/beg for the rest of my life…” and I just don’t have the option or the time to do so.

So, it’s possible that to give myself a bit of breathing room over the next few months while we are working our way through the holidays, there could be shorter posts with just one of my poems, a small ramble about makeup, or there could be a post about therapy work or some of my other health experiences. I used to plan out my topics so they were mostly cohesive, but right now I just can’t devote much energy to that and sometimes it just could seem a little bit random for a bit longer. Random as in “look at all the cute geckos climbing around on the side of our front porch entry way last night after our therapy walk” kind of random…because geckos are just so stinking cute 😀

Some Reading & Viewing To Consider

We may as well call this section “Margie Made Me”- although really she didn’t, I chose to experience these items because she had mentioned them and I like to be as present and informed in conversations as possible. I am very grateful she chats with me, but aside from that, I felt like they are relevant to things that I focus on or am interested in, so I am sharing them here with you guys 🙂

Flowers for Algernon, by Daniel Keyes

This book is an expansion of a fictional short story by the author, and consists of journal entries for a young man (Charlie) with intellectual disability who undergoes an experimental procedure that temporarily expands his mental acuity beyond that of those who designed the procedure itself. By using journal entries as his plot delivery device, the author allows us to more readily place ourselves in Charlie’s position. I don’t know that I personally agree with all of the conclusions- for example, it is presented that those around Charlie are rejecting him because of his arrogance when he is at what is considered his peak mental performance.

I think sometimes people often perceive the same actions or words very differently if they feel like someone is in the same circumstances as they are than if they feel like the other person is not. For example, when I was a size 20, I could repeat something I knew about health and nutrition to another overweight person and they didn’t feel judged. Once I was a size 8, that same statement to that same person left them feeling like I had criticized their weight, when in fact I had not nor was that what I was trying to imply. Otherwise, I do think this book is a thought provoking read.

An Inspector Calls, 2015 BBC version

This is a movie version of a play where the dialogue is given faithfully, but I felt like the ability to see and hear the emotions as rendered by the performers delivers an emotional richness that accentuates the full impact of this play. The plot follows a family being interviewed by an inspector after the suicide of a young woman and ultimately asks each of us to contemplate the ripples made by every word and action flowing from us.

And, before we go: “let’s talk about Tarte, baby…”

This is the part where some of you might want to just say “peace out” on the rest of this post unless you also are a purchaser of make up. Typically, for bigger brands I like to wait until something goes on sale or clearance before I get it. However, there was a recent Tarte release ( the Maneater After Dark palette) which I noticed did not make it onto their website and right now is only at Ulta. Which has me thinking it’s possibly limited edition and may not make it to being discounted. And, when I was doing public therapy in there recently with Tony…there was only 1 left. So…I ended up buying it for me (please don’t judge me, I literally know I did not need this and that I could probably benefit from a 12 step program for makeup) but we’re talking about this because I know some of you might have your interest and attention drawn to it because of the more neutral autumnal tones with a couple pops that make it seem appealing for holiday wear approaching Christmas.

So, what I like about Tarte’s formula is that for a powdered shadow, it tends to be more forgiving on an aging eye. I am 46, so that definitely is a bonus for anyone in my age range or above. That being said, I have noticed that the mattes can fade some with their shadows- even if you apply it to a wet high quality eye shadow primer. In the picture below, fading has already occurred and I don’t even have my mascara on yet. However, the bottom picture is right before I put this post up, which is a few hours later, and as you can see, the level of fading would really only be detectable to someone who put the eyeshadow on and knew what it had looked like right after application. I know some of you prefer more muted or professional looks, and for those types of looks I don’t think this level of fading will bother you. Definitely if I personally am wanting this to last multiple walks in the heat and need to care about how I am going to look come 8 pm this is not the formula I personally am reaching for. But for someone working mostly indoors…I doubt that’s going to be too much of an issue.

The next thing I want to draw your attention to is the embossing on the more foiled shimmers in this palette, which is raised far more than is typically seen in eye shadows. This is, in my opinion, a bit of a problem because if you are wanting to rub a brush, your finger, or a sponge tip applicator on these to pick up product for use, it crumbles off chunks of eye shadow. Which I definitely find to be undesirable, though I do really like the quality of the shimmers in this palette. So you would need to be very careful and just rub along the tops of the raised parts until they wear down…which is annoying to me personally, but not a deal breaker.

So…for those of you giving it the eyeball on your next trip to Ulta, those are the things I would want you to keep in mind before you picked up your wallet. If neither of those things bothers you, I say happy shopping on this one neutral lovers 😉 Much love, Ari

Ariana's Posts

Tactile Defensiveness And Water: One Approach

Posted on by Ariana
Bath coloring tablets, photo by Ariana

Even as an infant, any time I gave Tony a bath, he’d immediately fuss, quickly progress to crying, and even begin to scream sometimes as the water touched his skin. He was especially sensitive about water splashing on his face, and even a fine mist would cause him clench his body and face in startlement. This is one way tactile defensiveness can present. By the time he was starting occupational therapy as a toddler just under a year and a half old, I had certainly already begun to try and help him gain comfort with water touching his skin. By the time he was two, he was enjoying baths, and within a couple of years water play was so motivating to him that we could use the local pool as an enticement to help him develop crowd tolerance.

His occupational therapist at the time, Miss D, told me that I had good instincts with what I was doing- because what I started out doing I did on an instinct level rather than one informed by direct research on the subject. Simply put, my approach consisted of very gradual desensitization and tuning in to things that Tony found motivating. The specifics are what worked for Tony, but the approach is something that could theoretically be used to help any young child suffering with such an extreme sensitivity provided that their own individual interests and comfort levels were tolerated and respected. This is only what helped Tony develop a love of baths and water play, that does not mean the specifics would be a one size fits all approach for anyone with sensory differences that experiences this kind of sensitivity to water touching their skin.

As a baby, when we’d take him for walks in the stroller, I would take a water bottle with the finest mist setting I could find. I would periodically pray myself first (so that Tony could see we were dong the same things to ourselves as to him), then Andy, and then do a quick spray over our little man with an animated and loving expression (Tony at that time was very responsive to expressions with smiles and would smile in return- the emergence of his autism was regressive in regards to early social skills). The weather was warm when we started this, so he would have noticed that after the mist landed he felt cooler. As he tolerated brief mists from a sprayer I would increase the number of sprays and duration, adding them eventually to bath play, being careful always to make sure my delivery happened in an animated and loving- but quieter- manner.

For baths, I started out with a bath sling, keeping water contact with his body to the minimum. Then, I would just put an inch of water in the toddler tub at first. I made no increases or changes until he was completely calm with the level we were at. I noticed Tony was drawn to bright colors, so I got color changing tabs to see if this would interest him and distract him as I tried to increase the amount of time he was in the water. And it was a huge success, he loved watching the colors and grabbing after the tablets, absorbed in the mystery of how they dissolved.

In fact, we still use color tabs because he likes them so much, but I progressed to use them as motivators to gain skills such as removing and replacing screw caps, etc. He likes to pick his own colors, and currently he will pull out one yellow and one blue every night. He does this until all the yellows and blues are gone because he knows they will mix to make green in the water (green and orange are his current favorite colors).

Sometimes he still doesn’t like larger droplets on his face, but he absolutely loves pools, baths, sprinklers, showers, rain storms, and fountains from the community pool’s splash pad. I know everyone has different opinions about what to do in regard to sensory differences, but I would say that what we did increased Tony’s quality of life and turned something that is a normal part of functioning in the everyday world that he hated into something he loves and looks forward to.

Tony smiling and having fun at our community pool, photo by Andy
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I’ll Take Risk Assessment Over “Singing in the Rain” Any Day…

Posted on by Ariana
Tony. We’ve been getting a lot of rain lately…all photos by Ariana.

I have always loved being out in the rain. I remember as a little girl, riding in the back of my grandfather’s uncovered truck bed as the drops splatted into and around me, M&M’s clutched in my hand, their colors bleeding out and melting, the clouds seemingly reaching down like fingers to wrap around my heart. That memory is heavily seasoned with the feelings of calm and bliss…I remember looking at the clouds and feeling like they brought to me the happiest memory I had of that day.

Tony didn’t always like to be touched by water, and how we got to where we are now is a different topic for another day, but now he too loves to walk in the rain. Much of the time, the rains are gentle and short-lived here and we can safely walk in them. Of course, as those of you who live local know, we’ve recently had a few more intense storms that have ripped out trees, etc….so I will check the radar and the warnings before Tony and I walk to make sure there’s nothing more dramatic coming our way.

The pictures show some of the trees in our neighborhood that were downed but not removed yet from the last two storms. There are dozens of trees that were blown over during a storm on Wednesday, and I would absolutely never take him walking in a storm like that.

Typically Tony has always needed to be warned to walk slowly and carefully- every single time we approached any sort of wet surface or the rain started to fall down. Every. Single. Time. But despite all of that, he doesn’t always listen. A little over a month ago he slipped on our wet porch and fell. Two weeks later he slipped and fell while we were walking into a QT during a rain storm. Neither fall resulted in serious injuries, but he did get a couple of bruises.

And then, the very next time we were walking near wet ground after that second fall I noticed something. He slowed down without me saying anything. He was carefully looking down at the ground as he placed his feet. If he can walk around a puddle, he now will. And he has consistently done this again every single time since when rain is falling or there are puddles on the ground from sprinklers. I don’t say anything now and haven’t for the past couple of weeks, yet he’s remembering and assessing those risks himself, modifying his own behavior appropriately each time.

Walking around…
Looking down, walking slowly, and placing his feet very carefully…

Sometimes with little things, it is easy to dismiss them for their diminutive size. But I say paying attention to the little things is important in our situation, because they can give me hints about what capabilities might be buried within our son. Him slowing down and watching his footing on his own when the ground is wet is a skill related to risk assessment, something he has to this point not really shown us that he is capable of.

Really, I love the rain. I couldn’t love it more right now, though it has brought a gift and a challenge…as it sometimes does. Knowing Tony can consistently and independently employ risk assessment when he really believes something could harm him is huge…helping him develop and use it for situations that we can’t let him experience first hand (like anything that risks him getting hit by a car) is certainly not going to be easy for a kiddo who’s first response is often to immediately try and do anything he’s told not to. Where the capability exists though, a way can certainly be found to help him develop it.

Melting M&M’s really can’t taste this sweet.

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When You Can’t Dupe Self-Care

Posted on by Ariana
Me, about an hour ago…

Lately I have really enjoyed questing through my eye shadow collection to see if I can dupe looks I could produce by a newly launched palette containing a color story I like. Today I slowly moved my way through stash-shopping and creating my own variant of what is the most likely look to be produced from Huda’s latest Lovefest palette. Everything is in slow motion because my body has just been tired this week. I am on antibiotics for a urinary tract infection, and my body is telling me daily that it’s still recovering and needs a little bit more self-care. I found I could definitely dupe the vibes of that particular palette with what I already own, but not the collection fragrance (which I really like), so I got the travel size bottle.

Self-care sometimes just can’t be duped either. That can be very tricky in circumstances such as mine, where right now I am the only acting habilitation therapist working with our son…so any time off I take results in missed therapy opportunities. But sometimes that just has to be done. So I prioritize what I consider to be his most important goals and focus on those…if I am physically able. For this week, it means I have focused mostly on his community safety and public therapy goals, reducing other therapy times so that I can lie down and do that extra bit of resting.

Community safety before makeup, spending lots of time in the bathroom not just while applying makeup, and doing our second session of practicing community safety skills near the end of our day yesterday. All photos by Ariana.

This isn’t always an easy choice, because often with too many routine and schedule changes, our son’s behaviors can worsen. So a balance has to be struck between the level of change and the level of behaviors that can happen before resting isn’t even possible regardless of whether therapy is being done or not. And sometimes, like this week, life just gives us a triple whammy of things: other therapists calling out sick, Hannah’s first week back and school, and me not feeling well. Tony is not pleased with the amount of routine disruptions, but he’s showing how far he has come on his path to becoming King of the Changes that we’ve not seen a huge spike in self-harming and his cooperation in most therapy sessions has still been close to the usual level.

I will also cut things out then, if I am able, in other areas where I can. Which means, this is all I am writing for this week. I wish each of you the best of health and happiness this upcoming week. <3 Ari

Ariana's Posts

August Gratitude & Some Reading

Posted on by Ariana
Andy & Ari just a few short hours ago…photo by Ariana

Some Thoughts On Gratitude

Earlier this afternoon, my honey and I had a lunch date at Dino’s Greek & Italian Grill. At the moment, my system is swamped with a surfeit of carby goodness and the will to sustain any sort of eloquent expression of thought is nil. The food, the ambiance, the personability of the waitress (for those of you who are local) were all delightful, by the way. I’m going to try and snap my fingers at my carb engorged brain now and encourage it to some semblance of order past repeatedly mumbling “nummy num num”…but it’s not going to be easy, so bear with me.

For years now I have written personalized gratitude notes to people who have been involved with our family. I have lately been thinking that I also want to intersperse just some other events or happenings that I have been grateful for…in part because I am running out of people to thank and I’d rather not start getting completely redundant. This month seems as good as any to lead in with a circumstance rather than a person that has lately filled my world with joy.

As some of you know, recently I was retested for some of the newer food allergies that cropped up last year after I developed Mast Cell Activation Syndrome. The plan had been to avoid the items and see if my system calmed down about them over time, because sometimes that happens and a person’s system can again tolerate an item it was reacting to. When I was a little girl, that is how they handled an egg allergy I had as a toddler and I’ve been able to eat things with eggs in them for many years now.

When the results were read for the latest round of testing, I was cleared to start slowly introducing everything but avocado and mango back into my diet and see how it goes. For me, one of the hardest things about the food restrictions of the past year emotionally was loosing the ability to be vegetarian (but I kept every single one of those cookbooks because I wasn’t willing to give up hope that my system would calm down). Lentils and beans of any kind had started causing hives and respiratory symptoms consistently every time I ate them. Emotionally, on top of everything else that was going on, it was incredibly hard, almost too much for me really.

So far, lentils, pinto beans, black beans, chick peas…they’re all back in my diet and not causing any symptoms of any kind. Cinnamon, Xylitol, and oranges are also back. I am really just flooded and overcome emotionally with how happy being able to return to vegetarianism has made me, how much it has meant to me. And now, I’m not as worried about asking my PCP for a different cardiology recommendation. They typically recommend a woman of my age get some sort of baseline check up on that, but I wasn’t too keen on being told I had any type of heart disease on top of the POTS without the ability to try Ornish’s diet. One of the former cardiologists said to me about that, “Why would you want to be on Ornish’s diet?” Well, I actually like Ornish’s diet and would find it preferable to surgery or meds…so it’s a lot to be grateful for, from my perspective. And the other food items…they just improve my quality of life. Cinnamon brings the happy. So, that is something that has come into my life this past month for which I am profoundly grateful.

Some Reading To Consider

When the Emperor was Divine, by Julie Otsuka

Last month, I read a news article from NBC that had me both upset and curious. A school district in another state was not wanting to use a particular novel based on the WWII Japanese Internment Camps because, allegedly, it didn’t have “an American perspective.” You can click on this sentence for a link to that news article. I decided that the best way I could determine how I felt about the situation was to read the book myself. But, I also didn’t stop there, I went on to try and look at some of the source material the author cites, and found that getting digital copies wasn’t the easiest…so I ended up on archive.org, where a free account allowed me to view A Fence Away From Freedom: Japanese Americans and World War II, by Ellen Levine.

In doing both of these, I felt like if I were a parent in that district, I might find my justice loving self saying Otsuka’s novel didn’t go far enough in bringing to life the perspectives and experiences of those who were so wrongly incarcerated and that I just might prefer Levine’s book with first person interviews for that. When the Emperor was Divine is written from the perspective of three Americans from the same family incarcerated in one of those camps simply because they had Japanese ancestry. The writing has almost a dreamlike quality in that it describes some details of what is happening but doesn’t become too bogged down in describing the emotions of the characters, the narration simply flits around without much sentimental elaboration.

And yet, it does a great job of slamming home the point that Japanese Americans were dehumanized in this process by not giving readers the main characters names. Perhaps maybe too, that could allow a careful reader to step themselves into the circumstances and think about what it would feel like if this was done to them. The book shows the loss of status, damage to property, damage to mental and emotional health endured by the family in a way that simply invites each of us to look at what happened, leaving the reader to determine much of the moral to the story. Was it the right thing to do? Was it a humane thing to do? Individual answers might vary on that. But, was it an American thing to do? Perhaps…our modern country was built on a history of genocide (as regards to indigenous populations) and enslavement of African peoples, so in that light, from my perspective, a novel that accurately depicts an ugly chapter from our nation’s history can only be seen as thoroughly American and I could find nothing in this book that should keep it off of any school’s curriculum list. I found it a heartbreaking read, but one I can recommend nonetheless.

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“Show Me The Changes!”

Posted on by Ariana
Tony during a direction change yesterday, all photos by Ariana

The seeds of the problem were sprouted and had grown strong roots before we had received any diagnoses past Tony’s sensory processing disorder. I, as a mother just trying to cope with an overwhelming array of challenges related to our son’s health had just been diagnosed with medication-induced liver disease. Andy was in graduate school, and I had been told I needed to loose all of that weight I had packed on living off of Papa John’s while trying to survive the first year of Tony’s life, being unable to cook most of the time.

So I loaded Tony, who was around 18 months at the time, into a stroller and walked up the main street in our subdivision, which heads uphill into the base of the White Tanks, making it more useful (in my opinion) from the cardio standpoint. I couldn’t safely leave Tony next to me to do any form of exercise at home, and at this point in time, I could still be holding him as many as six hours a night to keep him from being injured while he was trying to harm himself during middle of the night meltdowns. So I would blearily trudge up this hill before taking Hannah to school or after, if the temperatures were cool enough, 5-6 days a week.

By the time Tony was stable enough in his gait to walk independently around the community, we quickly realized: there was only one route and one way he was willing to walk…up that main street hill. Which was problematic, because we had other places in the community we wanted and needed to walk, and given the number and speed of the cars, it really wasn’t my preference for an initial route to expand his safety skills.

So, the first challenge was to try and get him to accept other routes. And what we quickly found with that was the way he walked on a certain street the first time was exactly the way he wanted to walk on it every single time after. We were at this time dealing with so much eloping (with an attempt to run off frequently occurring every few seconds), I know I have written about this before, but every outing at that time into our neighborhood was like a high speed chase wrestling match with a fair amount of self-harming when he was denied access to what he wanted (like someone’s yard) and we often had spectators. By the time elopement was reducing, he had learned the value of using all of his strength and body weight to try and push to where he wanted. So, we have been working simultaneously to eliminate pushing and expand his flexibility for walking directions and changes to routes, both expected and unexpected. Sometimes sidewalks are closed for branch trimming, for example, and we need him to walk safely and calmly around things like that.

As of this past spring, we were still having ongoing challenges with the pushing, and we were only able to get Tony to calmly accept 20 seconds of directional changes. A recent change suggested by a BCBA (to increase the length of the change if he pushed) was making him angrier and we were seeing dramatic increases in pushing. I recommended that we switch to differential reinforcement (that means only giving him a reinforcer or reward if he meets certain criteria as opposed to rewarding any effort), and the current BCBA team, who were new to working with Tony) agreed to try it. Previous BCBAs were hesitant to do so because they felt there wasn’t enough evidence to support Tony understanding differential reinforcement, but I have long felt it is clear he is more than capable of doing so. And, shortly after that, all community safety walks were moved to habilitation therapy hours and have not had any ABA team involvement.

So, what follows is where we stand with just me acting as the therapist for our son on community safety outings and the person currently making decisions about what to do and how to advance things.

*Tony now tolerates random and novel changes that can last up to 70% of the walk, with the first reinforcer not being given until the 50% mark. Combined changes have totaled as much as 95% of the route for recent outings. He does not need counting or timers to continue with a change, but will follow my verbal direction for when it is completed and when he can request a change himself if he wants to. I will advance the level of difficulty once he’s meeting the current goal for 2 days at 80% or above.

*Sometimes, Tony will now initiate changes to routes himself.

*Pushing of any kind is almost entirely eliminated, with no episodes on community safety for the past month, and nothing that required physical blocking for nearly 2.

*Reinforcers are being faded (reducing his dependence on them). Started out with french fries when we began with differential reinforcement, faded to cheetos within a couple of weeks, now will often use banana pieces, apple slices, and orange wedges during the evening walk. Some walks we do multiple changes, and I will only reinforce three that are calmly done (in a random manner if more than 4 changes are being done), and we have seen some walks with as many as 8 changes where all were well tolerated and only 3 were reinforced. Soon we will go to providing only 2 reinforcers.

*He will now sometimes calmly tolerate a no for his most preferred activities within the community without protest, pushing, or eloping…and I am fading reinforcement for that also.

He will carry all of his trash until we get to a garbage can, he won’t let anyone carry it for him, and will actively look for trashcans on the route.

In addition to what was noted above, there was a gradual tightening of standards when employing differential reinforcement. For the first couple of weeks, we only asked him to not push in order to be given the reinforcer. Then we started talking to him about how within a few days, he was going to need to also not be running or walking away from the direction indicated to be getting the reinforcer. Once implemented, I adhered 100% to the communicated expectations. And now I have tightened it further and informed him that any attempt to lay his hands on me when he’s upset about a change will loose him the chance to earn a reinforcer for that change. We are still expecting him to finish the change, even if he breaks one of the expectations. If Tony communicates a desire to go a certain direction partway through the change without running, walking away, prompting, or pushing, those requests were initially entirely honored, and now we are working him up to accepting a no some of the time for that type of request.

Andy walking with us while we are practicing a very long, very novel change…

We also have added (as of this past May) a consequences component that is enforced by Andy when I am clocked in as a hab therapist working with him. If Tony pushes anyone, he looses use of his kindle for 2 minutes. He most certainly understands this type of consequence, and it is important that he does, because much of the world functions in this manner. Drive above the speed limit, you’re going to loose some money…drive drunk, you could loose your license, that sort of thing. Anyone being paid by DDD cannot implement such a consequence unless it is approved by an oversight committee (hence Andy gets to tell him that when I’m clocked in). While differential reinforcement did a lot to dramatically reduce the pushing, adding the consequence for his kindle had an immediate effect in virtually eliminating pushing in every environment, except for those moments where he’s gone into panic mode.

I was not sure how well this might transfer to our current ABA therapists if he resumes community safety with them at some point in the near future, and generalizing these abilities to others is extremely important. The principal behind everything I have been working on is gradually increasing his tolerance for not getting his way and then increasing the amount of time he can tolerate that, but he deeply loves me and is certainly at his most cooperative with me. Last night we were able to test out whether he would generalize these changes with Casandra, and he safely followed her as he has me these past weeks, with the final direction change profoundly altering the last half of the route. For weeks now, Tony has been showing me a great deal about how much he understands with his behavior through the changes he has made, and it was a high point in my week to see him be so willing to do that with someone outside of our family…and so I share it with each of you 😀

Ariana's Posts

Recovering Moments of Life Sublime

Posted on by Ariana
Driving up to Payson, by Ariana

The increases we have seen developing in Tony’s tolerance for new places and novelty in routine have coalesced with his emerging control over his desire to use his body to get to what he wants in a way that allowed us to enjoy a hike this past weekend at Woods Canyon Lake. Perhaps it is the simplest of any mundane thing to some, but to soak in the pine-laced air, to search in the folds of petals for the gasp of a smile…to me, they are moments of life sublime.

Tony certainly is not the only one in this family who had a lot to work through to make those treasured moments possible. Two hours straight we hiked, allowing me also to indulge in the bliss of gratitude. For 18 months I have been working to increase my tolerance for sustained activity with POTS. A year ago perhaps this would have been too much, but I felt I could have hiked further in had we sufficient time to remain there longer that day.

What follows are some pictures, some of them are mine, some are Hannah’s, of what I hope is only the first of many moments where we all as a family can reclaim these activities and invite them more regularly onto our schedule once again. After the pictures I have a couple of notes on adaptations we made to help Tony feel more comfortable with elements he still found challenging.

Photos By Ariana

The frog in that last picture was barely over an inch long, and much cuter in person than in my photo!

Photos By Hannah

The Adaptations We Made

*We took our little man’s kindle so he’d have something to watch in the car, making the multi-hour car drive less upsetting to him.

*Tony remains fearful of bathrooms with hand dryers. We tried to stop in the bathroom at the McDonald’s in Payson, where we bought him French Fries, but there were a steady stream of people using that bathroom (which only had hand dryers). If there is a family bathroom at a location where we encounter this type of situation, we will use that because it eases his concerns since he knows I will do everything I can not to accidentally set off the dryer. And then we will just dry his hands on his or my shirt, and follow up with hand sanitizer if necessary. In this case, there wasn’t a family restroom, so we went to the local Bashas’, figuring that the bathroom there would likely have fewer people using it…and that change helped Tony meet his needs and feel comfortable in the process.

*Our son still struggles some with not slipping while walking up/down sloping areas, so I helped steady him with my own hands as needed.

*Tony didn’t want to turn around initially when we said it was time to walk back to the car. I always carry a bag of skittles with me so I can offer him a treat in exchange for calm cooperation.

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Some Thoughts About Why

Posted on by Ariana
Tony & Ariana waiting in Ross while Hannah shops, practicing appropriate waiting and other safety skills while shopping, photo by Hannah

Generally, many of the teens who went to my high school came from families that were far better off financially than mine. At some points, I was saving money given to me at Christmas and for my birthday by my grandmother and my Aunt Cile and Uncle Lawson…and I would use it to buy thrift store clothes for me and small cheap gifts for my friends from Pic ‘N’ Save/MacFrugals.

Thrifting in the early 90’s with 20 dollars generally wouldn’t get you anything anyone trying to survive the high school social pecking order wanted to be caught dead in. But, I was very artsy…so I leaned into that. I chose the most unusual things I could, paired them with massive amounts of rings, bracelets, necklaces, hip scarves and just rocked it like it was everything I wanted to be. I felt a little more comfortable being seen as deliberately making an artistic statement than mercilessly teased and trashed for being poor. And, by senior year, I was known as the gypsy woman by students from all grades that I had never even met. I was voted best female artist by my senior class, so my cultivated persona was clearly found plausible.

Everyone just assumed the orange and purple sunglasses I wore to every class flowed from the same veins of reasoning. She’s rebellious, she’s an artist… that was just to be expected. But not really.

I hate artificial lights (like the one shown in the Ross picture above). I can do better with them if there are windows present and natural lights rays to dilute those beams, but otherwise it’s like little bits of sand burrowing into my eyes, spawning hooks once inside, and screwing up into my brain and clawing their way down into my stomach if I have to spend more than an hour or two under them. The headaches could get debilitating, and were often attended by a certain ambient level of nausea. But colored sunglasses totally filtered and changed all of that for me, making my classroom days feel more comfortable and doable.

A gentle hand to get his attention if he’s not looking up and someone’s about to cross our path…
We’re focusing on having him look around while walking so that he can avoid running into others.
We’re practicing waits more reflective of typical shopping. Photos by Hannah

There are different approaches to helping a kiddo who is believed to have significant behavioral problems adjust to public spaces. My view is and has always been that many of the reasons an individual on the spectrum might not do well in a public area has nothing to do with behavior. They are experiencing physical sensations based on the way their nervous system is processing the world around them- but everyone looking at them is just thinking it’s all about a behavior and a choice. So my opinion is that for our son, whose sensory differences are significantly more profound, helping him adjust to and tolerate as much sensory input as possible during a period of higher neuroplasticity would be the most effective strategy to getting him to tolerate and eventually embrace certain environments outside of the home.

For him, behaviors in the home definitely won’t generalize to the outside world. A concurrent approach tackling both safety in the home and in the public was what I felt would be the only way to give us a chance of helping him acclimate to both before he got too big to safely help…before his mental wiring became a little more rigid with time.

Stores like Ulta provide a heavy amount of visual stimuli for the brain to process, Tony waiting while Hannah shops, photo by Ariana

Our work has been a progression of tolerance and an acquisition of skills that is still ongoing. Four years ago, Tony could barely tolerate 2 minutes in the Ulta pictured in this post- even with French fries. Literally he’d be trying to flee and push his way to the exit sometimes within 10 seconds…if he was even willing to walk in at all (and plenty of times he wasn’t). This is a store that has intense smells and offers up an overwhelming amount of visual input. We can now go in their for 30-40 minutes with waiting for up to 10 minutes in a line without french fries or any sort of edible treat and he’s calm and comfortable with that. We all know I love me my beauty products…so it’s an improvement that has worked towards making both of our worlds feel happier.

That is my why for some of his programs…why would I put him in positions to need to block him from pushing towards something in public, why I would expose him in incrementally increasing doses to environments that he had strong sensory aversions to. Because that was the best hope I saw for being successful in helping his system learn to process certain things differently, to expand his world past our house. Only time will tell where we get to with all of this, but already it’s made a positive impact on what Tony feels comfortable with and what our family can do together. So, once again, I may have chosen to pursue something in a seemingly unconventional manner for some, but I stand by that choice as being in the best interest of our son and our family as a whole.

Ariana's Posts

How The Silence Breeds

Posted on by Ariana
Is this the face of a kiddo you’d think capable of throwing a bookshelf? Photo by Ariana, Fall 2015

She was very sorry, she told me…she had lost her temper and yelled at him. A special ed veteran of many years in a generally well-funded district (and a wonderful teacher many had assured me), his developmental preschool teacher herself wasn’t supplied in my opinion with sufficient aids to meet the level of needs present in her classroom.

The first day I dropped and picked our son off for preschool there, I found out about the desks and bookshelves they were placing across the doors to keep kiddos in the classroom. This district sorted out kiddos with developmental disabilities into what they considered to be cohorts of similar functioning and challenges…so this teacher as I understand it had all of the district’s runners.

“They’re breaking the law,” I vented to Andy. “I know,” he said, “but I’m just glad they’re doing something to try and keep him safe since they won’t put a one-to-one aide with him.” At that point, while he had been diagnosed with level 3 Autism and we knew about his FASD, we still hadn’t received the results of our little man’s genetic testing and we had no idea how long it could take for Tony to develop the risk assessment or impulse control necessary to be safe in any environment. He needed then what he still needs now: constant supervision for his own personal safety.

But at that moment, we stayed silent and didn’t report them because we still didn’t have any idea what his developmental trajectory could look like, and we hoped his safety skills would grow into that environment. I imagine some parents stay silent because they don’t know what the laws are…or maybe they do know, but both parents need to work and they have no other option and they too are just thankful something is being done to protect their kid.

And now, this much-respected teacher was apologizing to me because she lost her temper and yelled when our then four year old son lifted up one of those bookshelves, tipped it over on it’s side, partially throwing it in the process so he could get out the door that led to the teacher prep room connecting two different classrooms, and make a run for it.

From an e-mail sent to Tony’s developmental preschool teacher discussing IEP goal ideas, photo by Ariana, April 2016

At the most recent IEP meeting before that moment, I had sat there for a second time presenting statements from Tony’s therapy team and medical providers (including his geneticist) about his ongoing need for a one-to-one support – not just for learning, but for safety reasons. And they sat there and told me they got this, they would have no problem whatsoever meeting Tony’s needs without it and that no one-to-one aide would be provided or needed.

I accepted her apology for yelling, of course. I understood she was in a difficult position. But it was as clear to me then as it was on day one that they did not actually have the ability to provide my son with sufficient support to help him learn as much as he was capable of, and it was becoming clear to me that they also wouldn’t be able to keep him safe much longer.

But they still had all of his learning and safety bases covered, they assured me.

I wasn’t even a little bit reassured. Because I participated and assisted in all of his therapy types and had since his therapy programs started, I could see some potentially alarming challenges arise from a kiddo with his particular combination of challenges combined with above average growth from Sotos. So, I reached out and had a conversation with a director of a facility I thought might be able to handle his needs if he continued trying to use force to get to what he wanted.

“You don’t want your kid in here,” he assured me. At that time, this was one of the places districts paid to send kiddos they couldn’t handle in their base schools.

And if this man, who knew I could apply for ESA and use that to afford their enrollment fees was saying that, I felt the wisest course of action was to take his word for it and do everything I could to avoid that as an outcome. Which included not wasting the money on an attorney in a battle with the district for a one-to-one aide. Because that aid might not have been comfortable working with him.

Tony, December 2016, a month after we pulled him, doing public therapy. Photo by Ariana

I suspected the day would soon be coming where they weren’t going to be able to handle him in that classroom or any other in that district, especially if the aide wasn’t a good match for him. And I had an equal confidence that I would be able to help him. So I pulled Tony and brought him home, where we have been engaged in an extensive program to help him develop more appropriate safety skills while working with others in public. The pandemic gave us some set backs there, but we are very near the point where we will be calling for an IEP meeting.

And when we do, based on everything I have experienced and heard from others in this area, I am expecting them to still look at me and say they’ve got this and that he doesn’t need one-to-one support (which he still does). I won’t believe it now anymore than I believed it then…but this time, the skills we’ve worked on growing should at least allow everyone to be safer there while we engage in ongoing discussions about what we are all willing to spend in regards to helping him attain his full developmental potential.

I don’t expect those conversations to be easy. There are limited resources because nobody wants to pay more taxes to adequately fund appropriate level of supports for individuals like my son. Many people can’t afford paying higher taxes in the first place. And so the parents stay silent…the community stays silent. And the silence breeds problems far more expensive in the end than they would have been if our special education programs were adequately funded in the first place.

Tony, last Saturday at one of the community pools, where he worked very hard and followed important safety instructions, Yes, that’s me standing behind him, as always. Photo by Hannah
Ariana's Posts

July Gratitude & Some Reading To Consider

Posted on by Ariana
After the rain last week, Photo by Ariana

To Emmy

I wasn’t surprised when you told me you were taking a job with a different company. We’ve long been aware the reimbursement rates AZ DDD (Division of Developmental Disabilities) gives music therapy clinics isn’t sufficient to pay therapy providers an adequate living wage. New grads come, get experience, and leave for companies who can afford to pay more because they won’t accept DDD- that’s been the cycle we’ve become accustomed to over the past 7 years. Even though we’ve come to expect it, of course we were still sad to see you go- and very grateful for the work you have done with our son. We appreciate your patience (especially during teletherapy sessions), your suggestions for verbal shaping, and your positive attitude while working with Tony. Thank you so much for everything you contributed during the year you worked with us, and we wish you the very best at your new job.

A Personal Note

Before I go into any reading recommendations, I would like to take a moment to reflect on the recent decision of our state’s Attorney General to enforce the 1901 territorial abortion ban as the current law in Arizona. For those of you who are not aware, this law provides no exception for rape or incest- a position that is more conservative even than the one taken by our former church (this can easily be verified on that Church’s official website), which did officially recognize a woman’s right to make a choice under those circumstances without facing guaranteed church discipline.

I am, of course, sensitive that some of you may hold different views- and that is OK. Just as I will respect you when you advocate and support for your own differing positions, I am asking you to hear my position as a child who experienced sexual abuse growing up. I thankfully never had to make this heartbreaking choice, but having to carry a child from those circumstances would have absolutely done irreparable psychological damage to me. Survivors of incest and sexual assault did not ask to find themselves in their circumstances, and when you are in that situation, especially as a minor or a victim of incest, the first move is rarely to run to the authorities or find access to emergency contraception (even assuming a young victim is aware that option exists, which most probably they would not) because of the power dynamic between the abused and the abuser. I have seen cases of children as young as 11 in other countries forced to carry a baby in these circumstances to term…a situation which also then will likely do permanent damage to the lifetime expected health of that young mother. So I find that I cannot personally support a law that is so restrictive.

My sister expressed to me that a person can still be pro-life and want to see choice preserved for others in certain circumstances. I agree with that. Therefore, I have personally chosen to sign the petition to get a measure to restore abortion choice to women on the November ballot in Arizona. According to the reporting by KTAR, the next opportunity after this year to get such a measure on the ballot would be 2024. For anyone else who may feel the same way and should have interest in signing this petition, this group only has until July 7th to collect the necessary signatures and you can find locations for signing given by clicking the link below:

AZReproductiveFreedom

Some Reading To Consider (you can click on the titles below for links to the articles):

“Sabrina’s Parents Love Her. But the Meltdowns Are Too Much,” by Joseph Goldstein, reporting for the NY Times

I think it is important for everyone in our community to listen to the stories of families such as ours and such as Sabrina’s- where the available community supports/resources are inadequate or non-existent, where parenting means accepting the risk of getting concussions, chipped teeth (I’ve personally chipped teeth because I got cracked in the head trying to keep Tony from self-harming), broken bones, or other injuries just to try and care for your child.

“School District, Parent in legal battle over child’s 300K per year education,” by Dan McCarthy

How does successful schooling happen for a child with rare disorders and needs the local school districts are inadequately funded and staffed to meet? What happens if the parents can’t afford or are unable to keep the child home? What happens if they can’t afford the legal fees of having to fight the school in question to require them to provide the level of care needed for their child? What is our commitment as a community to caring for individuals with rare genetic disorders and their families?

I know from personal experience that districts do not want to give so much as a one-on-one aid to children who require it for successful learning. We were in a position when Tony was younger where I had the choice of pulling Tony out to try and meet his needs or lawyer up. Our brief experience in the public school system involved:

*Denied request for one-on-one aide despite statements from the medical and therapy team that it was required.

*The teachers/aids illegally blocking the doors with desks and bookshelves to keep children with limited impulse, risk assessment, or cooperative skills in the classroom.

*Two occasions where I returned children to the classroom who I found walking around in the hallways while I was on the way to pick up my son that had left the room after staff removed those bookshelves and desks at pickup time, and the teachers weren’t even aware those particular children were missing until I brought them back.

*Multiple occasions where our son’s speech device was removed from him because they didn’t like that he was asking for things they didn’t have in classroom.

*Failure to prevent him from consuming gluten, despite being provided with specific gluten-free items and being made aware of his sensitivity and assuring me he’d be monitored and assisted appropriately during snack times.

And I could go on. There are reasons our son has been home with me for the time being…and our family is not unique. Which is why this article is recommended reading.

And, a couple more interesting articles I saw this month that I think are good to be aware of:

“More than 30 years after ADA, cities fail to be accessible,” by Newsy as reported on ABC15.com

“Revoked: Gilbert group home at center of murder investigation loses license to operate,” by Erica Stapleton, reporting for 12 News.