Ariana's Posts

“Are We Pro-Life Or Pro-Birth?”

Posted on by Ariana

*Please note this is an extra post for the week, the main post which went up yesterday about Hannah will follow below this one

Sometimes the only time Andy and I will be able to spend together in a day is when he is helping me with a therapy outing, all photos by Ariana

A few weeks ago, I was sitting with my sister in a VUU sermon being given by their then interim minister, Rev. Wooden, and he clearly and concisely articulated a sentiment I have expressed before: “are you pro-life, or pro-birth?”

Today Roe v. Wade was struck down, and this is, as I have stated before, a very controversial subject. While I always respect the sanctity of life, I recognize there are some very difficult circumstances people can find themselves in. So these days, I generally don’t take any official position other than choosing to sit in non-judgment. But sometimes, I think someone still needs to ask hard questions and listen to what others might have to say about it, even if it doesn’t feel easy or pleasant in the moment.

So I ask each of you to think about Reverend Wooden’s question: “are you pro-life, or pro-birth?”

What follows is my own take on this question which asks us to dig deep within ourselves and our collective social views. As I have stated before, we never planned on being in our current position in regards to having a child with significant developmental and behavioral challenges. The reason the entire month of May, a month which sees several special occasions including our marriage anniversary, saw me posting about therapy related celebrations is because when you are the parents of a loved one with Tony’s level of challenges, unless you are able or willing to place them in a facility, your entire life becomes care and therapy and nothing can be celebrated in the manner our American culture finds normative. On my birthday, I still did a full day of therapy. On our anniversary, I still did a full day of therapy. You get the idea.

As I have stated many times, there were and continue sometimes to be challenges in finding babysitters for our son. I have even had people I never approached to babysit come up to me and say things like “don’t ever ask me to babysit. I can’t babysit him. I can come over and sit and talk to you while you fold laundry or clean, but I just can’t babysit him.” If you are reading this and you recognize this statement, please know that I love you and I understand this is hard and would never want or ask someone to step into a situation they feel like they can’t personally handle. It’s OK for you not to be able to handle this. Even though the limited amount of support we have had much of the time has not been anything I would wish on another, it’s not good for Tony or you to be put in a situation you feel incapable of handling and I absolutely honor that.

M-hmm. That’s me doing a therapy outing while I’ve got a dental abscess…in fact, we did our normal therapy schedule. I was talking to my dentist about calling in antibiotics while I was doing a community safety outing approximately 11 hours earlier.

However, what most people were seeing when they said something like that to me was usually only a fraction of the challenges. So what I would want anyone who feels like they couldn’t even handle stepping into my proverbial shoes for an hour to think about is how fair is it for us to dictate and mandate motherhood to someone who is confident they’re not up to an entire lifetime of this?

For me, I don’t want anyone to twist my position into anything it is not. If I had been pregnant with Tony, and genetic testing had been done, and I had been given the option to terminate the pregnancy because of his genetic disorders I would not have done so. But what I do has required me to give up virtually everything about my own wants and dreams- his quality of life has been entirely dependent on what I/we have been able and/or willing to sacrifice (even in the face of chronic illness) to make his therapy programs and opportunities possible. What our family has and hasn’t been able to afford.

737 pm, June 22, still have at least 20 more minutes left on this therapy outing…my first therapy outing with him was 730am that day.

So what quality of life do we as a society give an individual with significant disabilities if we force their unwilling mother to carry them forward into the world? Are we providing her and her family adequate support? Or are we saying “don’t ever ask me to help” and then looking away at what unfolds in the absence of sufficient supports? Are we providing adequate, humane, affordable housing and care options for disabled individuals whose families cannot take care of them, or is there a dramatically insufficient amount of all the above, resulting in individuals with disabilities quietly being pushed out into the streets or eventually landing in the prison systems? Are we committed to not just ensuring a person comes into the world alive, but to giving them any kind of quality of life that involves love, community, and opportunities for advancing to the best that they are capable of…or are we consistently under-funding services for the developmentally disabled (because it would require more of us in taxes) in ways that create therapist and facility shortages?

The road I walk is hard. If you don’t think that, re-read all of my posts and then let it sink in that they represent only a fraction of what has been going on. So even though I would have chosen every time to carry Tony to term and moved forward as I am even if I had been his birth mom, I will absolutely not sit in judgment on a person who looks at all of this and says to themselves “I know I can’t do that,” and painful as it might be for me to think about for myself personally, I’d want their rights to make that choice for themselves protected. Each and every one of you knows the depth of the love I have for our son, but most people I have ever known wouldn’t want to adopt a baby who was already known to have his level of challenges. We’d be collectively lying to ourselves if we suggest otherwise.

What are then the moral issues in requiring someone to be born into circumstances that only increase their risk for abuse, neglect, or worse?

So I ask again, as Rev. Wooden did: Are we actually fully pro-life… or are we just pro-birth?

Andy & Tony, who can now participate in and enjoy outings to the community pool, even when it’s packed and loud, because we’ve done extensive amounts of therapy with him. In this picture, he’s practicing sitting and waiting while I dry off.
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I love You Always

Posted on by Ariana
Hannah and her boyfriend at the 5SOS concert this past Monday, All photos by Hannah

The on-call OBGYN ran up to my hospital room door, throwing it open, with his lab coat flapping around him and swirling to a halt as he immediately stilled his forward motion and tried to sound more casual as he said, “We need to take you to the OR right now, the baby has gone into distress.” I already knew, I had been watching the monitor and the nurse’s face (who was in the room at the time) when Hannah’s heart rate had started to plummet, sending alarms off at the nursing station (where blessedly, the doctor in question happened to be already standing).

Two days already they had been trying to induce labor, having admitted me for preeclampsia and kidney failure, but I wasn’t dilating enough. That morning, they had told me my kidney numbers were in a range where she absolutely had to be delivered that day one way or another. They had broken my water less than an hour before Hannah went into distress (we had named her from the moment the gender was confirmed via ultrasound), and placed an epidural.

I was told as they hurried my gurney towards the OR how lucky I was that an epidural was already in place, because then they could just switch the meds instead of knocking me out with general anesthesia. As the anesthesiologist was administering said meds, the OB told me I was lucky because since they didn’t have to do general anesthesia, they could give me the “bikini cut.” I know he was just trying to make conversation to distract me and help me stay calm, but I was feeling slightly salty when I told him: “have you seen the rocky mountain range of stretch marks I have going on down there? This body is never seeing a bikini again!” I was packing on excess fluid so fast in the last weeks of my pregnancy, the skin had started to rip and tear in places, with some areas on my abdomen having bulged outward because there were fewer layers of skin intact over them from the rapid stretching.

Perhaps if this doctor were still alive I’d tell him something different…he died of a heart attack just a few years after delivering Hannah. I decided to wear that bikini anyways because how can I expect this beautiful daughter I love so much to take me seriously about ignoring unrealistic beauty standards if I can’t get those voices out of my own head long enough to wear something?

They did some sort of standard poke test prior to cutting the incision that morning and asked if I could feel it. I could. I heard the anesthesiologist call out for someone to come and help hold me as his own hands began firmly pushing down on my shoulders. “She has to come out now, we don’t have time to do anything else” he said. I don’t remember exactly what I said, just something like I understand and just get Hannah out safely.

I know there was some pain, but it’s not what I remember the most…I remember hearing her cry and feeling relief that was far better than any anesthetic.

I have loved Hannah since the very first pregnancy test (I took 3). I was that expectant mother who talked and read to her tummy. She was always very real to me even before her birth, but nothing prepared me for how much that love would deepen when she was placed in my arms for the first time. I love both of my children just as fiercely, though I don’t write often about Hannah out of respect to her current wishes. And I did ask her permission before writing this post.

Always, every second of her sixteen years, I have been so grateful that she and I both made it through that morning she was born. We adopted Tony because it wasn’t safe for me to try and have any more kids biologically I was told, and Hannah very much wanted a sibling. We really didn’t plan to be in the position of parenting a child who has the degree of challenges and disability Tony does. As a mom, I love both of my children equally, but for the past nearly 10 years, while I have done the best I can to be present for both of my children, I know the balance isn’t fair and I couldn’t even begin to make it so, the needs have been extensive enough to prevent any possibility of that. And there is a canyon of grief that was cut slowly through my heart because of it. Yet, every day I watch the love and kindness Hannah shows for her brother and I am just in awe of her. My own sister could tell you, sometimes I was a complete stinker as a sibling when we were growing up.

Hannah has had to sacrifice a lot, and I’m not always able to fix that. The whole reason I began our public therapy program was to try and create the ability for our whole family to get in to do things that were important to her because we weren’t having a whole lot of luck with finding babysitters when Tony was younger. But some environments (such as concerts) there’s never going to be a way to get Tony through them.

When Hannah initially asked permission to go the 5 Seconds of Summer concert, Andy had Mondays off, so he said “absolutely!” Since I developed POTS, he’s been the first choice for taking her to any activity that could run late into the night because it’s physically harder for me to loose the sleep- my body often doesn’t regulate my heart rate nearly as well if I’m getting less than 6 hours. Well, Andy has recently switched jobs…and turns out, he had to work that day.

The moment I found out, I fired off a text, a prayer, and a whole lot of mental finger crossing to my fabulous sister-in-law, Randi. Because some things are more important that loosing sleep and having a little bit of a rougher day afterwards. I owe Randi big time, because she came and sat and played with Tony and Casandra for 5 hours so that I could take Hannah to the concert instead.

To see her happy, to have the privilege of seeing her that happy for so many hours…it was everything. I just can’t even articulate it. Yeah, the therapy goes on and it sure did this week just like every other. But sometimes part of my why and a great deal of what I feel is rarely articulated on this screen. I love you always, Hannah.

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Only Fluff & Updates Today Folks…

Posted on by Ariana
Funny…and while I don’t really identify with the concept of buying happiness from a store, these polishes did make me smile. And, this business definitely has a clever packaging game. All photos by Ariana

I’ve had to fit a few extra things into my schedule this week, and I came home today from an appointment with my dermatologist and I just needed to lay down for a few minutes. Since the last item they cut off a few months ago was from dysplasia-land with atypia, the dermatologist did another full skin check and decided something else merited biopsy. And now, I need to keep a promise to Hannah and take care of some other things. And, I could either spend more time and write something slightly more relevant to my blog theme, or keep my promise. I’m going for the latter…which means y’all are getting fluff & stuff this week.

But before I go, just a few notes:

Please remember that dental abscesses of any kind can become serious. This was my latest here (which popped up late last week). Because I called in for antibiotics and saw my dentist right away, this thankfully ended up being contained to an infection in the gums.

Some of you by now are probably noticing that fabulous necklace I’m sporting. It is certainly much more fun to look at than the inside of my mouth, if you ask me. My sister made it for me (rainbow themed for pride), and I couldn’t love it more! Literally, it goes with everything, though I’ve been a bit more on the obsessed with peaches and corals side this month.

A few other things I have loved:

Some of you have wondered where some of my nail polishes have been coming from. Some of the ones that have made me smile the most have come from Polish Me Silly on Etsy. My favorite eyeshadow palette purchase for the past month was Adept Cosmetic’s House of El…literally I have used the shimmers in probably 30% of my looks, I’m that obsessed with them. I also really love the coral shade in the Viseart peche quad (which I am wearing in the picture of my gum abscess), and surprisingly I added a new eyeshadow primer to my top three: Dominique Cosmetics Everlasting Eyeshadow Base (provides great adherence and isn’t completely stark white, which makes it easier to create a quicker neutral look if I want one…which sometimes I do).

The shimmers are from House of El…

Not stark white…yipee!
Neutral….
Even more neutral
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Where I’m at on my post a-POTS-calyptic Journey

Posted on by Ariana
Did you notice? All photos by Ariana

Let’s take a look again at one of the pictures I posted last week. How many of you noticed that the hand on my hip was turning red in the fingers and knuckles? Just a road sign to anyone who knows to look for it that I’m on a post a-POTS-calyptic road. When I am standing, both my hands and my feet will redden.

Me and Tony, June 3, 744pm MST doing community safety, 5 minutes still from our house.

Right now I’m in a situation where my therapy days are lasting from around 7 am to around 8pm Monday through Friday, and then a few hours each weekend day. A year ago, I really couldn’t do as many hours as I am right now. My journey has been a gradual one, but I feel grateful for being able to move forward along this path in any manner. I still can’t be medicated to help regulate my standing and moving heart rates, so I’ve been engaged in a process of trying to gradually retrain my system to handle certain things.

Now, I’m going to be upfront that this is just what I’m doing from the vantage of taking a detour outside the guidance of a doctor. As previously discussed, my former cardiologist’s position was that they were happy to see me when my husband isn’t treating COVID patients. He’s always treating COVID patients right now, and quite frankly, it’s terrible for my mental health to support that as a customer. After everything I’ve been through in recent years, I don’t want to be mean, and I can respect their rights to do whatever in their own personal practice, but mentally I just can’t with that from anybody who works in healthcare and pay them in money that could have come from treating those COVID patients. Families such as ours shouldn’t be relegated to the rest stop of second-class patienthood.

June 1
June 9

The make up is always about my mental health…it doesn’t just bring the colors, it brings the happy.

So, this is me talking about what I am doing outside of advice from any physician. Usually, in my experience with the current medical model, if nobody can medicate you, they’re not spending time talking with you about lifestyle modifications anyways because they don’t really have that kind of time with the way current reimbursement models work and many patients aren’t interested. For the record, I’m personally always interested in staring my journey with lifestyle changes. So since that’s where I had to start from, that’s the journey I’ve continued to be on.

Wearing more shorts lately because less fabric helps my system handle the heat better right now…that’s what I’m wearing today…

The first thing I personally did was look up a bunch of studies and articles, but some of it has just been a journey of finding out how my system on POTS processes different things because there is some person to person variability with that. I can’t even do a regular cup of decaffeinated coffee or my system reacts….I have to use half the amount of grounds to prepare it, same with my Crio Brew. Not everyone’s system is so sensitive to caffeine that way when they have POTS. And for some reason, celery…holy cow, I have never really liked celery, but my post POTS system craves this stuff as a fuel because it actually really helps my system regulate my heart rate better. Possibly a combination of the fiber and some of the natural compounds that promote relaxation in it. I can totally see a difference after I eat celery to the point where I have a stalk with breakfast, lunch, and dinner.

I also do a mix of cardio related activities at different intensities meant to challenge my autonomic nervous system on multiple levels. One of the things I’m currently working on is trying to retrain my system to react and adjust better when I need to stand up quickly. Once upon a time, I used to be a person who did Burpee workouts. When a person is meandering on a post a-POTS-calyptic side road, that’s hard to reach on the map. So, what I did was borrowed and heavily modified an already modified burpee workout given by Jen Ator and designed in conjunction with BJ Gaddour in a book I purchased from the Amazon (way back in the day when I was still willing to let them regularly throttle our credit card).

Using the base of our stairs instead of an aerobic box, I started as many steps up as I needed for my heart rate at first, stepping slowly into a modified plank position. This gave me a handrail to grab in case I needed it. I started out moving slow with low reps and needing a lot more walking out between sets. Then I moved down the stairs, moved up the reps, decreased the walking between sets, that sort of thing. Then I worked up to adding jumping jacks after a set of twelve step-outs from the bottom stair. I am not putting any sort of jumping component after each step-out yet because safety is my priority. I don’t want to end up passed on the floor because the changes in position and movement were too sudden, so I want to make sure the changes I’m making are gradual for safety reasons since this involves sudden ups and downs- which are a bigger challenge to the system for someone with POTS.

Yesterday I was finally able to move to 10 step-outs per set on the floor with ten jumping jacks after. Just loosing the bottom stair made an immediate difference in my heart rate. And so it will go. Eventually as my heart rate goes down after each set, I’ll move things up to jumping back, to jumping after, to adding a push up. Probably that’s a ways away still…and maybe sometimes it’s more frustrating to have a path that’s less direct to what I want. And definitely it’s something to work through when so many things dramatically change at once in regards to what your body is doing and what you are capable of. Developing mast cell activation syndrome and POTS changed some things about my journey and there was an immediate grieving process that I needed to respect and move through. But I’m so thankful that I have been able to make lifestyle changes and physical progressions that have allowed me to be at a point nearly 18 months later where I can put in the kind of work that is needed for our family right now.

After 12 step outs + 12 jumping jacks from the bottom stair
After 10 step outs and 10 jumping jacks from the floor

Now, some of you may be noticing my title. Typically I don’t play with words in exactly that manner, but I was inspired by a poet I have been reading some from recently. She’s very creative with the word play, and I love it! I am linking one of her poems below (you can click on the title below to read it) that seems to speak to what I feel about my post a-POTS-calyptic journey right now.

Morning, by Margie

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June Gratitude & Some Reading

Posted on by Ariana
All photos by Ariana & Andy

To Jenny

From the first day you met with us on Zoom you have been a constant source of support and positivity. You heard my challenges, you listened to my feedback, and you stepped in and offered to help with things you didn’t have to, like social stories. You were understanding when Tony was struggling to adjust to the change and bond with you over teletherapy. And within weeks of transitioning Tony onto your caseload I was struggling with health challenges of my own. I can’t tell you what it meant to me to have you reach out with your own experiences, understanding, and support when I went into anaphylaxis and as I was going through the diagnosis process. I can’t even tell you what it means to me that you look past those moments when our son doesn’t want to cooperate and recognize what he can be capable of. I am so very grateful for your patience with both of us, and we are so thankful to have you as part of our little man’s therapy team.

Dr. Boesel

Y’all, my allergist doesn’t read this blog and I typically don’t name my personal providers. But I have been asked who I recommend in that capacity. If for some strange reason he were to ever find this, what I would want him to know is what I would want each of you to know about why I would recommend him, and that is that I really appreciate that he listens to me. Last visit, we were talking about a treatment he was proposing for one of my current conditions and I indicated some concerns because it wasn’t a good time in my life in case I reacted to that medication. For me, medication reactions are frequent enough that whenever anybody proposes a med, my first reaction isn’t “yippee, this will fix everything,” it’s “crap, how bad could this get?” He didn’t shame or push me, he just said we could try it when I was ready. I can’t even tell you how much I loved that, and that he took the time to look at the area on my back where a lesion was removed just to see if there was anything concerning that I should rush back in for follow up on. That’s definitely not something he needed to do as part of my visit, and I felt cared about as a person and a patient. And I love that. So that’s my recommendation for those of you who are local.

Some Reading To Consider

“Beyond awareness: The medical system needs to deeply reform it’s care of people with autism,” by Amanda Joy Calhoun

For a parent of a child with severe autism or other significant special needs, having our feedback being ignored in medical circumstances is a near constant trauma. Some of you may remember a trip to the ER with Tony when he was 4, and that the doctor there didn’t want to listen to the paramedics’ recommendations or mine for sedation…so our son was held down by five people, including myself, while he was screaming, hysterical, and fighting with all of his strength against the placement of a pressure bandage. Which, the provider made far too tight because of the difficulty/rush of the working circumstances, and it left Tony in so much pain he couldn’t sleep and I held him the entire night keeping that bandage on as he frantically tried to remove it. Next day at his PCP’s office when it was removed, we could see the damage from how tight they put it…angry blisters and tissue damage on most of his fingers. Ultimately, it is the child or the family that gets hurt the most by this type of situation, and I love that anybody is using their voice to raise awareness for this.

From pictures sent to someone via text a few days later as the damage was starting to heal, Andy was driving at the time I was texting from the passenger seat, so between that and the phone the image quality isn’t great

Malice, by Heather Walter

This book is the first in a duology where the sleeping beauty story is creatively re-imagined with a romance between the character who is pushed into the evil sorceress role and the cursed princess. As a romance, I honestly kind of hate this. I also think it could play into some pretty negative stereotypes. I’m more than halfway through the sequel, and to me, I don’t see the relationship as having any possible healthy dynamic because of what has happened in the plot- though certainly I will be interested to see how the author wraps this up. So, we’ll just start off with I’m not recommending this as a romance, LBGT+ or otherwise. What to me is most compelling about this book is that it seems to ask the question of who really is the villain. And, is a person really a villain if that’s all they are ever allowed to be and all they are told they can ever be?

One Other Recommendation

For a good long while now the scale we’ve been using with Tony for practicing doctor’s office skills during habilitation has been malfunctioning. I finally got sick of it and ordered what was a well-rated scale from Walmart. Yesterday when it arrived, it became apparent that the display only showed Kg, and if I wanted an easy pounds conversion I didn’t have to think about or have access to any of the other features (alleged body fat percentages), I would need to download the product’s app. Because the scale wasn’t registering Tony’s weight at first on the app (but it was on the scale), I stepped on it with some stuff on me I don’t normally have on my person when being weighed, and then I tried it again with Tony. When I noticed that the report on him labeled him as chubby, I went back in and looked at mine, and it had labeled me as obese. Even with the extra things I had on my person, the five extra pounds that put on me from my current weight wouldn’t put me in the obese category for my frame size.

The first picture is me yesterday at the end of a very long day of therapy…and the other two pictures are from a couple of weeks ago, when I actually weighed 2 pounds more. Yes, I know I’m not skinny and I have been hearing people’s opinions about that my entire life- and plenty of people still look at my size and see “fat,” or “chubby.” I prefer bodacious, thank you very much. But, no subjective view about what is attractive changes that there is a medical definition for obesity…and I don’t qualify as obese. For the record, I am currently 5 pounds above the upper limit of the healthy weight range for my frame size…which isn’t even that overweight.

Let’s just look past the fact for the moment that I hate, absolutely hate that this app uses shaming language like “chubby” to describe anybody’s weight. We’re talking about this because fitness and health apps are common now, but that doesn’t mean the information that is being imputed for you by the application based on how it was programmed is correct. But if you don’t realize it, what that display tells you could do a whole lot of damage to how you think about yourself and how you manage your health. If the frame of reference being used to interpret your numbers by the developers is itself flawed, inaccurate, or incomplete…what you get back likely won’t be accurate. As a large framed woman, I recognized immediately that the frame of reference they were using to compare me to was a small framed woman. And there’s a definite difference in what is considered healthy weight for a small framed woman versus a large framed.

This was a distinction that was made to me during the first of many meetings I had with a dietitian in my twenties. And that is what I recommend for anyone really concerned about accurate information about what is healthy for them, what their frame size is, or who is concerned about a more accurate measurement for body fat. Go talk with a dietitian. And perhaps delete the app…that’s what I did.

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When You Can’t Celebrate, Find Something To Smile About

Posted on by Ariana
My makeup is usually a celebration of living a life of loving color. All photos by Ariana

For all of us, whether your circumstances are like mine or quite different, there are times where we find we can’t internally celebrate- even if there’s a special occasion or two floating by. I spent my birthday doing a full day of therapy, multi-tasking as many things as possible. For example, unless Jenny or Tony needs my help during speech teletherapy, I’m off camera with a kettlebell working out. But for me, if I can find even one thing to smile about, sometimes that can help me remember what it is to still celebrate the gift of life. Here are some things I have found to smile about lately.

Smiling in finding ways to beat the heat…or at the very least, make it so we can do the things we need to. An umbrella helps me handle walks in higher temperatures with my POTS, and Tony loves getting wet before we go walking in the summer, and it helps keep him cooler.

Adding a little sparkle to my day always, always makes me smile. The photo does not do this eye shadow justice.

Smiling about being told by Pastor Susan that Tony is never a disruption. Pictures from Tony’s return to the First Church UCC campus.

Smiling about some new found impulse control and the ability to keep walking through those sprinklers and take that frozen yogurt up to the counter without trying to eat it until after we pay.

Smiles for trying new things…Tony’s never wanted to try climbing on this before.

And big smiles for a great setting spray that enables me to obsess over my makeup application only once and still walk twice a day in the summer without looking like fully melted wax. 712pm this past Monday, above 90 degrees outside and we’d been walking for 40 minutes already when I took this picture.

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Celebrate Every Little Thing Like It’s Big

Posted on by Ariana
Me chasing after Tony (mid April) because he wasn’t stopping on his way out of the pool…Photos by Andy

The stress in my life lately has been palpable and ravenous, requiring the delivery of an increasing diet of effort, guzzling sleep while leaving behind far too many regurgitated memories of middle of the night hours. Last night was the first night in several days I slept more than 6 hours. Tony was awake a couple of those nights, yes, but I think at least for one of them the noise I was making from my constant detours out of my bed was what woke him. As my thoughts have stilled and settled around what was needed, I reflected on changes I am going to be making to my writing format.

Shorter. Fewer comprehensive therapy posts. More happy moments. Definitely more happy moments. I think when I first started writing, I wanted family and friends to have a bit of a better understanding for what I was going through. I wanted other parents to have as comprehensive an idea as possible for at least one way of attempting to handle certain situations.

More than four years into writing posts here, I think I’ve definitely done both of those solidly. So for the time being, what I need is to give my stress level a little time and content consumption restriction.

Last Friday certainly was a day I was feeling that my emotional bones had been picked clean by every bit of what can go wrong sometimes, so when Andy and I headed into our community pool with Tony, I decided not to clock in and do any of his habilitation hours. I still planned on working with him on safe behavior, I just really didn’t feel like having to do any of the requisite paperwork.

At one point on our trip, he climbed out of the pool, water flying from his hands as he jumped up and down, flapping. I told him to stop (walking, not flapping…I literally do not care if he flaps as long as nobody is getting hurt), which he did. And then I noticed him look down, his face conveying a sharpened concentration. My eyes followed to a little girl sitting a few feet in front of him happily munching on her McDonald’s french fries. Tony’s favorite. Crap. I knew there was no way I was going to reach her to block before he had his hands on those fries.

As he stepped his left foot forward towards acquiring his target, I called out “Tony stop right there! Those are not your french fries, don’t touch them!” And he stopped. Literally I have had to dig his hands out of other people’s McDonald’s bags in public as I apologized profusely, and this is the first time he’s ever stopped on his own in this type of situation. I told him to come back, and he did…without me having to step out of the pool.

Tony loves going to the pool a lot, it’s a great environment to maintain and build up his tolerance for people and loud, disorderly noises because of how motivating he finds water play.

I praised him, I tickled him, we focused on having a good time. We drove home, and because Tony and I had to meet an RBT for an ABA session, I asked Andy if he could drive in to the magical land of the golden arches to procure for Tony a large helping of his favorite slices of fried heaven. I reminded our little man periodically as he was waiting, “Papa went to go buy you french fries because you stopped when I told you to and didn’t touch that little girl’s fries.”

Tony ran around jumping and flapping as he waited, his eyes glowing when he was finally handed the bag of french fries. As he ate, I continued to celebrate what he had done and tell him how proud I was. Yeah, it’s a little thing. And sure, he’s 10 so really everybody would have liked to have seen him independently cooperate with something like this sooner. But around here, if you want a little thing that’s quite important to ever happen again, I have found that you need to celebrate a big. And so we did…

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Celebrating 2 Years of Telehealth Speech Therapy Being More Successful Than The In Person Sessions :)

Posted on by Ariana
Tony getting ready to answer a question for Jenny during a speech therapy session online, all photos by Ariana unless indicated

Tony has always, always hated speech therapy. For many years this was his least favorite therapy type, as every speech therapist who has ever worked with him can attest. Our little man understands a great deal more than most people realize (in both English and Spanish), but he still usually doesn’t want to communicate unless it is guaranteed to benefit him. He will only indicate the number of something if he’s telling you how many he wants, that sort of thing.

We’ve discussed this before, but nobody on Tony’s therapy team thought he was a good candidate for telehealth two years ago. But the pandemic turned doing everything we could to make it work into a necessity, and I’m not going to lie: I dreaded most teletherapy sessions regardless of the therapy type. Adverse behaviors were up during them, and all of the hands on management of this fell to me.

We didn’t really see a whole lot of smiles in speech therapy before it became based around answering questions about videos he likes.

Except for speech, interestingly enough. Chris, his former therapist, had asked me what I thought would be most likely to hold Tony’s attention and encourage any sort of cooperation. I indicated that if he could play some of Tony’s favorite simple songs from YouTube and ask him questions about those over zoom, we might be able to get this thing to work. That’s what happened, and within a short period of time, Chris and I both were in full agreement that at least with speech therapy, Tony’s enthusiasm and cooperation dramatically improved with telehealth. In fact, speech is the only service I still want to keep on telehealth because of the extent to which this manner of delivery has improved his cooperation and behaviors during that therapy type.

Tony loved Chris, and he didn’t really take it well when we suddenly lost him as part of his therapy team. For those of you who have been reading with us for a while, you might remember the really nasty sprain I got last year right before I went into anaphylaxis…I got it by slipping on Tony’s Ipad while I was chasing him up and down the stairs because he was running up them and self-harming when his new speech therapist took over. He also did a whole lot of running up and hiding in the linen closet, trying to get out of working during these early teletherapy sessions with Jenny. I’d sit up there with him keeping him safe and text her, letting her know what was going on if I couldn’t get him safely down for several minutes- and that happened a lot during our first few weeks with her.

A screenshot of one of the social stories she created for our son. Chris and Jenny pictured.

Once he got used to working with Miss Jenny, speech went back to being one of the easier therapy types for me to assist with- either in person or telehealth. And while Tony wasn’t thrilled at first and it took him a couple of months to really warm up to working with her, so many of the harder things I was going through in the first couple of months she was working with us were eased and improved by the social stories she made for us to use with Tony. Social stories that explained the change in therapists and that explained some of the differences he might experience in what I could and could not do when I developed POTS, what could happen if I had to go back into the ER for more visits.

The basic process we are using is pretty simple. She opens each session saying “hi” to Tony, and he greets her back on his AAC. She asks him what song he wants to pick, and then for each song he requests she has either actions she wants him to imitate or questions she wants him to answer. Sometimes he’ll ask for a book during session, and Jenny will pull up a copy of someone reading it on YouTube to go along with him flipping the pages in real life. Really we are working on building the habit of and encouraging him to communicate even when he’d rather not. Which is most of the time. Sometimes he will get a mischievous or determined look on his face and pick every single item on the page except the correct answer. Even with that, you can tell he knows what he should have said, he just really doesn’t want to some times. We close with them saying goodbye to each other, but sometimes (like today) he tells her “I want goodbye” while she’s still trying to get him to answer the last few questions. All I can do is laugh about that one, really.

But, we keep plugging away at it. Jenny has an insane amount of patience with him, and I am so grateful for that. The rest of this post is just pictures of some of what’s happening in session. Most of the pictures and screenshots were taken by me, some of them were taken by Hannah and I will label those accordingly.

Saying “hi”. Sometimes he starts out with great eye contact, others not…and that’s OK.
Tony responds to her greeting, he insists on asking every person’s name even if he knows them right now because I told him he shouldn’t ask if he knows who they are. That’s one way his ODD manifests I think. But then he goes in and selects their name on his own right after he asks it.
Saying “hi” on a different day…
Jenny’s pulled up a book he requested on YouTube…Hannah’s in the background taking pictures.
We read it a couple of times that day, the first time he went through it himself and looked at her and the screen. Then we read it again with him on my lap and me reading it out loud. Jenny on the computer in the background on the last picture. Photos by Hannah
Tony looking at Jenny/the computer and thinking about which song he wants to request. He will tap the surface of his device with the backs of his fingers while he’s thinking about it. He still chews on a lot of different things during sessions. At this time, we were trying to prompt him to grab his own device to answer questions, instead of me giving it to him. First two photos of this trio by Hannah.

Jenny will freeze on a point and ask him to imitate an action, in this case he’s using his hands to make the turning around motion.

Sometimes we do a lot of waiting for him to respond or pick a song. Jenny’s demonstrating her flexibility below by showing him the body part she’d like him to touch for this song, and sometimes he struggles with touching his legs, and he’ll land on his tummy instead.
She’ll circle or use arrows to indicate what she’d like to talk about. Here we’re working on using the correct gender and describing looking.

The expression says it all in the firs pic…sometimes, there’s not always a lot of enthusiasm for describing things even in videos he loves.

Sometimes he still gets off task and runs off to do something he shouldn’t, like raiding the cereal. I direct him back to task and prompt him to ask permission.

Sometimes he has to describe what a person is eating. For this particular song, he knows it’s a chocolate chip cookie and he asks for one to eat before he answers the question about what is happening on the screen in terms of a cookie being eaten.

We work on a lot of different things: size descriptors, what animal he’s hearing, what action is happening…sometimes he looks at me, sometimes Jenny, and sometimes neither of us.
Imitating and responding and he’s not looking unhappy…I’ll take it! 🙂

Ariana's Posts

Some Private Thoughts Made Public & A Bit Of Reading

Posted on by Ariana
Ariana, sometimes the eye shadow colors are just about my mood…

Typically, I begin each new month’s postings with a gratitude note and then some form of recommended viewing, reading, listening…that sort of thing. Although certainly there are people and circumstances for which I could express gratitude this month, I am deliberately choosing to omit that because I am going to be typing my way around and through some matters of controversy. And in doing so, I feel it is important to make it very clear that the opinions expressed here are my own and strictly my own. I remain grateful for every member of our son’s team who has worked towards helping him gain functional life skills, and I respect their rights to have their own private opinions which could be dramatically different from mine. That they work with our family as therapists does not in any way imply agreement to any statements I am making in this post, nor is me stating a position any indication that I expect others to agree with me on these matters in order to do their job as professionals.

Almost as soon as the news first broke that a draft copy had been leaked to the media of an upcoming Supreme Court decision overturning Roe v. Wade, legal experts began weighing in on what this ruling could possibly mean as regards to other legal protections that had previously been affirmed and upheld by that court’s rulings. The overwhelming consensus of the opinions expressed by a variety of legal experts I have read is that the instrument of attack on overturning Roe v. Wade can certainly be applied to other laws such as those granting protections for interracial marriages, marriage equality for LGBTQ couples, and access to contraception. Those rulings were all predicated on a belief that they were covered under the umbrella of rights to privacy within the 14th amendment of the constitution. I have linked a few articles below as recommended reading that give the gist of some of this, including the original Politico article leaking the draft (which the Supreme Court has now verified as authentic), an IAPP article (an organization describing themselves as being a neutral global privacy organization), and a Vox article that consists entirely of interviews with legal experts discussing the possible implications of this ruling to other laws.

I am not in any way intending this post to delve into arguments for or against abortion. While it is certainly worth discussing that in a republic that claims to be democratic, this ruling does not reflect what has consistently been expressed via polling and surveys as the desired outcome of the majority of Americans for decades, I believe the larger implications for other laws should be something we all reflect deeply on as we consider what and who we are going to vote for going forward. Although the Justice who wrote the draft opinion demurred in regards to the possibility of this new ruling being used as a cornerstone of a legal argument striking down other laws, I believe it is important to note, as Aziz Huq (a University of Chicago Law Professor) told Vox, “Abortion, the draft says, involves ‘moral’ issues- as if forced sterilization and the punishment of private consensual conduct between adults didn’t!”

I have occasionally touched lightly on the fact that a little over three years ago, I resigned my membership to our former church. I declined to discuss my reasons here, because they are part of my private life. But, if laws that have been written to grant and protect rights related to a person’s private life are under attack, perhaps more of us may need to enter respectful discussions about these heretofore presumed to be private matters, especially if rights granted are important to us personally. My experience in my former church becomes relevant here because after 19 years as a member, I can with confidence and authority state that this group views marriage and who should be allowed to marry as a deeply moral matter. And that church is not alone in their belief. One of my private reasons for resigning membership to that church was in fact because I disagree wholeheartedly with their position in regards to this matter and do not believe it to be consistent with my own personal beliefs about sin or morality. My former church’s official position is that what they term to be “same sex” relationships are completely sinful and immoral, and they have been vocally and financially very active in opposing marriage equality.

Really it usually doesn’t matter to anyone when someone like me makes a public statement about their private sexual orientation. I’m not famous, I’m not anybody who could influence a large segment of the population. But it is private people like me, doing all they can to live the very best life they can each day, without the more extensive resources of the wealthy, that will be impacted if this new line of legal reasoning is used to reverse other legal precedents.

I am a Bi woman. While the phrase “hearts not parts” resonates with me, my attractions mainly do fall along traditionally male and female lines. If you know me and we’ve never had this conversation, well, that’s because it’s typically something I consider to be a private matter, where discussing who I could find attractive isn’t usually any more relevant to a conversation than it is to any other person who is married and in a closed relationship. I have been faithfully married to a man for 19 years this May because in our former church, that was the only accepted option if you wanted to be seen as moral and a member in good standing. I spent 19 years listening to this particular organization tell me exactly how morally wrong people like me are- I joined that church 3 years before Andy and I got married. So if you asked their leadership and a good chunk of their current active members (and really, you don’t need to ask, their positions are very public and in writing), what you would hear is that they considered who can and can’t legally get married to be a matter of grave moral urgency.

…and some times the colors I choose are deliberate messaging about who I am. Pink, purple, blue.

I have known since elementary school that I was attracted to both genders. When I was younger, I really had no idea how to frame myself and my own private sexuality as regards to morality, and it took me years of different experiences and thinking through a great many things to come to a point where I could be comfortable with exactly who and what I am, and feel confident and comfortable in saying that I personally cannot agree with religious models claiming people like me are immoral. If you look carefully at the positions of the groups I am currently willing to publicly or privately attend in regards to religion, you will note that they all support marriage equality. And that is because that is what I have privately needed to show myself love and for my own inner healing.

I love my husband, but Andy and I certainly have had this discussion…if anything ever happens to him, and I’m in a position where I want to date or feel like I even can date, I’m going to be open to dating either gender, any race or ethnicity. While it is a private matter, I imagine this will be as much in public as it is for any other consenting adult who wants to go to restaurants, movies, miniature golf, not be discriminated against at work for their relationships, or consider how thankful they are that if the relationship becomes serious enough to warrant it, they can get married. And I privately and publicly wouldn’t see anything immoral about any of that.

Because this draft ruling as it stands seems to imply that possibly so many of us don’t have a right to privacy in these matters and several others if a statistical minority of the population find them to be morally offensive to their own beliefs, I think perhaps more of us just may need to be a bit more respectfully public. Being a mom, a caregiver, a therapy support/provider, and a non-consequential disabilities blogger…those things aren’t the only things I am and they aren’t the only areas where I feel individual rights should be protected.

You can click on the titles below for links to the articles I recommended earlier in this post.

“Supreme Court has voted to overturn abortion rights, draft opinion shows,” by Josh Gerstein and Alexander Ward for Politico

“Leaked Roe v. Wade opinion sparks right-to-privacy concerns,” by Jedidiah Bracy for IAPP

“After Roe: 9 legal experts on what rights the Supreme Court might target next,” by Sean Illing for Vox

Ariana's Posts

April Gratitude & Some Reading

Posted on by Ariana
All photos by Ariana

To Those Taking The Time…

To those of you taking even teeny bits of time to chat with me on-line, thank you. Y’all know who you are: Kent, Ewa, Chris…and we all know you don’t have to. I’m going to keep this part very short, but that is not because this is a matter short on importance to me. The past few years have been very hard for me…very. I can not overstate enough how many smiles it has brought to my days just having someone respond to me from time to time. Thank you <3

A General Note:

I know it’s April Fool’s day, but this is definitely not a joke! I even considered posting last night so that nobody would even suspect that, but alas, I was running too short on time. I am going to be taking the next month of from posting. I am just super burnt out, working on restructuring some of Tony’s therapy hours, and I need some extra space in my life to take care of me and do otherwise non-essential things like assemble puzzles, read trashy novels, and binge watch Season 2 of Bridgerton or Madre Solo Hay Dos. I know I promised to head into April with a speech therapy update, but I want to feel refreshed enough to give it all of the attention and love the therapist involved deserves for her hard work and efforts on our family’s behalf…so that’s coming first part of May after I’ve had a bit of time off for myself.

Since I am not going to be posting for the next month, but we are in the height of allergy season where I live, and I know I am not the only one experiencing eye-related symptoms that can interfere with a person’s make-up routine (or even being able to see properly for that matter!), I am going to put down a quick but photo intensive run through of how I deal with some of that for me here in this post before I get into any reading recommendations.

Allergies Got Your Eyes Puffed?

So, this is how I looked March 29 after my morning routine:

But, I definitely didn’t start out that way. It started like this:

making sure you can see the swelling from enough angles to note it’s bad enough it’s messing with how much I can open the left eye…yes, my hair really looks that crazy sometimes rolling right out of bed. I had been awake all of 3 minutes when I took these pictures…

And, I had taken an Allegra and 3 Vistiril before bed. I also use an antihistamine eyedrop in the mornings. And, on the morning I took the above pictures, which was March 30 (I was running a tight schedule on the 29th, so didn’t picture the swelling that morning, but it was actually worse), I had gotten a little bit more than 7 hours of sleep, so…definitely not the culprit. Those of you who can drink copious amounts of caffeine may not have this problem to this extent (it’s a diuretic), I know I never realized exactly how many of my allergy symptoms the caffeine was masking until I developed POTS and became unable to tolerate anything but the most minimal amounts. So, this is what I did:

Yes, I know the caffeine patches are typically put on facing the other way, this just works better to maximize contact for my eye shape, and the 3rd picture is after the caffeine eye patches…swelling improved, but still not gone. Which is why I do the other steps…

First, put on some caffeine eye patches. Start the morning routine…part of which needs to include those antihistamine eye drops! But trust me, when you’re this puffy, you’ll need far more than that to save you. While I’m eating breakfast, I’m going to hold frozen bits of paper towels over the swollen areas. This will take quite a bit more of the swelling down, and then I’m going to hit it with a cooling stick before I do any of my priming or makeup routine.

Sometimes I just throw a dampened paper towel in the freezer while I’m making my breakfast…picture number two is after icing, swelling better, but still not entirely gone, so next I’ll go in with this cooling stick…

Strategically, it’s important to think about the placement of your eye shadows, because for me, everything I shared still won’t fix every last bit of swelling if it’s a bad pollen kind of day. If I am struggling with this problem, I will put a darker matte all along the base of any areas that are still swollen, because that will visually make them fall back to someone looking at my face. I will also assemble my eyeshadow in ways that are going to pull the eye in multiple directions (like the very first picture shown above), making it harder to focus on the swelling…such as darker spots on both corners of my eye lid, different colors above and below, an intense inner corner highlight and a spot that is more intensely highlighted just below the arch of my brow. This can even be done with neutrals, just carry a mid tone neutral matte all through the swollen parts.

Makeup for March 30 & 31st. Different lightings shown on the 30th so you can see what I am talking about with the highlights. Some days I’m low on time and just make sure to apply a darker color all throughout the part of the fold in the crease area…
My makeup today, using a mid-toned (for my skin tone) neutral matte…sometimes the blending isn’t perfect because I’m in a rush (this was under 30 minutes of my day today) but it doesn’t need to be to create the illusion I want…

There will be some issues that you can’t get around quickly or easily. The skin will have some extra lines from having been recently swollen and deflated. That can be seen a bit better in these pictures I took to text to Andy after a haircut I gave our son this past week: eye shadow can settle into those deflation lines, and they will be visible no matter what you do. However, using a cream based eye primer with a silicone based pore filler will help minimize this a bit. Be careful again, not to use to much of that pore primer or everything will crease. In the future, I have considered purchasing something like a Nira to see if that will help make those lines go away quicker after the worst part of my allergy season, but that’s an expense I’m not up to yet, so it’s a game right now of how to depuff the eyes and make them look as close to normal as possible.

Something to avoid: These are looks (shown below) I did last week before the swelling started. Notice the lighter colors over the part of the skin just above the crease near the inner corners…if you do that, it’s not going to do anything to mask any residual swelling…you need a darker shade to basically contour that out visually. Hope that helps, my fellow allergy sufferers <3

And, if all of the changes happening via age or allergies are affecting how you feel about yourself, I’d like to reference the sentiment in Leorah Hallel Goldberg’s review of the “Still Pretty” palette (linked here)…whatever your age (I’ll be 46 in May, so I definitely get some of what she’s saying), size (I’ve been a size 20 before, so again…her comments on that resonate), allergy symptoms (not really addressed, but every allergy sufferer knows problems related to this can dramatically alter a person’s appearance in ways others can be critical of): life changes each of us in some way, and “you are still pretty!”

Some Reading To Consider

Music May Be Just As Powerful As Exercise At Improving Mental Health, Research Says, by Arielle Weg for Prevention Magazine

I read an original summary of this article on a Spanish News App, and it reports on a study which concluded that music was has just as powerful of a positive effect on mental and physical health as exercise. Good to know in difficult times, and good to know if something has impacted one’s ability to be physically active I think!

The Ex-Hex, by Erin Sterling

I read this because it was listed by Amanda (from Makeup.Just.For.Fun, a great YouTube channel to be aware of for anyone who wants reliable and through reviews on all things Colourpop) in her February favorites. And you know, after reading it, I agree it was a cute and fun book! Definitely has some swearing and sexuality that won’t be in keeping with the standards of someone looking for a clean read. So if clean is a must for you, be aware this definitely isn’t that! The book starts out with a heart broken young witch who casts a vodka-influenced curse on her ex-boyfriend. I think part of the fun is not knowing the rest of the plot-line, so you won’t get it from me. But if you want something other than puzzles or music to distract you during stressful times, this could be a quick and fun read for you.

The current puzzle I’m working on, a Bepuzzled 1000 piece puzzle based on Serlock Holmes & The Speckled Band