This week our family’s beloved matriarch, my mother-in-law, has entered into hospice. For those of you from other countries or areas that may not be familiar with what that is, it is end of life care. As Hannah reminded me, her grandmother always tells people to bring her flowers while she’s still alive because she won’t be around to appreciate them when she is dead. Out of deference to those wishes, and owing to the unknown nature of things, I am changing this week’s usual post and running a gratitude note for her tonight (which will go out in a separate post a few minutes from now).
I am not going to be giving any reading or viewing recommendations because I know in our family at least, everyone will be far too busy coming together to be with family. I will also be changing a bit the planned order of topics and the length of posts for the time being so as not to put any unnecessary burdens of reading on other members of our family, and there will come a time as part of this process where I will take two or three weeks off of writing to focus on the needs of our family at this time. I thank each of you who have been continuing to read with us each week for your understanding about this and that you patiently slog your way through my meandering posts each and every week. Much love, Ariana
I have lived somewhere in this metropolis for 29 of the past 31 years, split into two periods of time. I don’t ever recall a time where the rain poured with such steady thickness for so many hours as it did last Sunday, but I had chosen to ignore to the flash flood warning messages coming to my phone one after another that cautioned against any unnecessary travel. The only music in my ears was the pounding down against the windshield from the heavens as I carefully locked my gaze at the highway ahead of me, the memory of Hannah telling me to drive safely so that I could be sure and return to our family compelling my full attention on the dimly visible sections of the road.
I wasn’t traveling to First Church UCC because I feel particularly religious these days- I don’t. I am not sure I will ever feel comfortable or trusting enough to officially join another church again (these are statements about where I am at, not about what any of you should be thinking or doing), but if I did it would probably be a Unitarian congregation because that is more in-line with where I am spiritually at. But some of their members have been very kind to us, so show up I will from time to time, and I am a big fan of the outreach they do for certain groups. The COVID waves and variants keep coming, but life must continue to flow on for each of us, for them, and the community groups they serve.
I gazed a smile at Pastor Susan she couldn’t see through my mask as I walked in late and sat in a back pew. I listened quietly and lit a prayer candle for a loved one. I complimented her on her sermon as I was leaving (she spoke on the need for increasing compassion and love of others regardless of their circumstances, also something I can always be happy to support) and then jogged through the rain to my car to repeat the tense drive back. After so many long months going only to doctor’s offices or other essential places, emerging to meet Gena for breakfast or visit other places I want to go has been healing. I have read the latest data on breakthrough infections with the Delta variant and it’s not pretty, but at this point, as I see it hiding out forever lacks sustainability…so I think for my mental health self-care and that of my family we are going to continue to go places and mask up.
Regardless of whatever else is raining down in my life, I know I can always count on being warmed by the love of our small family. Hannah told me she would love to do my make up this past Monday, and I can say despite the weekend rain that the only flash flood I experienced this past week was the feeling of being flooded by how much she loves me (and she, of course, is so loved in return). She has a preference for very natural make up, which is just fine! As all of you have seen, my own personal style tends to be a bit more colorful. Sometimes the makeup I do for myself is art, sometimes it’s just makeup for a special occasion, and sometimes it’s messaging in its own way.
Hannah & me after she did my makeup
Me being my bright purple self
Other parts of my self-care forecast are also hard to predict. The allergy Gods give and they have taken. The hive size for certain items from the scratch testing determined what was recommended to challenge test in the office. Garlic ended up being cleared as something I can safely eat after challenge testing, and I can’t tell you how happy about that I am. I have still been trying to find a bean type I can currently tolerate and it hasn’t exactly been going well. But those I am testing out at home because there are a ton of different bean types. Kidney beans are causing hives, so those are out for now. I know my allergist would prefer I stop trying to test bean types at home…he’s a super sharp guy and I respect what he says, but I also know that the best diets for cardio vascular health based on current studies are either low meat or no meat, and my allergic reactions to the bean types I have been reacting to are mild at this time and easily managed at home. And while I realize POTS is a problem with the autonomic nervous system, I would really like to eat a diet that would be more protective against developing other types of heart problems.
What I have found is that my POTs is heavily influenced by the amount of sleep I get. Heavily. If I get 7 hours or more, right now my ability to tolerate movement and heat is good enough to allow me to do everything I need to for our family. Anything less than 6 hours, and my body is going to struggle a lot more to keep my heart rate stable with movement. For me, this realization has been incredibly stressful because Tony’s middle of the night wakings can have a big impact on what happens to my sleep and therefore my ability to function. Before I could just drink something caffeinated and soldier through my day no matter how little sleep I got. Now with POTS, I can’t tolerate caffeine at this point and nothing masks what the lack of sleep is doing to my heart rate.
Picture after mild swelling started in my eyelid crease
Swelling down, Stevia challenge test
This has caused me to feel pretty tense and worried about Tony’s middle of the night wakings. I was super stressed out about how poorly that and the medication tweaks we were trying to do were going when I did the last in-office allergy challenge test we did for Stevia, and it took me a few days to think through why the swelling in my eyelids from the Stevia went down so quickly in office before the antihistamines were even in my system. I was producing a ton of adrenaline because of how stressed out I was (we’d been up since 130am that day), and adrenaline is one of the ways a body can also fight swelling and allergic reactions. The most recent medication change is holding out better for Tony and that is helping with his sleep, but further adjustments may be needed at some point to help him continue to sleep adequately most of the time because our family needs me also to sleep so that I can do all of things that are needed of me.
Walking in to Fry’s
Tony & I sitting on a bench
The public therapy show continues to go on, and next month we’ll be talking a bit more about that and the ABA team processes involved.
My role in some of the therapy work we do with Tony can occasionally still be pretty demanding physically. Yesterday we had to make a significant unplanned change to his most preferred walking route that was necessitated by landscaping work being done during a larger section of our community’s main road, and he was incredibly displeased. I had to chase him down multiple times and block him three times from running into heavier traffic, traffic that is legally able to go about 40 mph on that street. Tony weighs 124 pounds right now. 15 minutes of that in 93 degree temps had my heart rate at 132, which isn’t great based on what my pre-POTS heart rate was, but it was within a safe limit for me and allowed me to do everything that was needed to keep us both safe.
Picture of me dripping sweat that I sent Hannah after Tony was calmed down and sitting in the shade drinking water
And this is why the makeup is going on after the morning walks this time of year! Me yesterday after the morning walk…
I was able to get seven hours of sleep the past three nights, otherwise my heart rate would have been much higher trying to do all of that. Even with those more stressful moments storming down, I took time to soak up an awareness that my day still blessed me with two rainbows at the end of it all, one from Tony lining up his color sorting bears after our first walk, and one in the sky as Casandra and I were walking back with him many hours later at the end of our evening community safety walk.
I really like softer blankets, so I got a weighted blanket that had a velvet-like fabric because that is what feels happiest for me personally 🙂
I am still needing to take hydroxyzine to help me sleep right now, but I am continuing to work on weaning down the amount. My internal stress levels are as well-managed as my POTS as long as I’m getting seven hours of sleep, so for now my PCP and I are leaving it at that. I did buy myself a weighted blanket when Macy’s had them on sale earlier in the month (it was an insanely good sale, I felt super lucky about the timing of that). I noticed during the early morning hours a few weeks ago as I was curled up on Tony’s floor taking deep, calming breaths while he was bouncing wildly up and down on his trampoline that his weighted blanket had a very soothing effect on me, so I have added that to my sleep routine and it’s fabulous!
And the rain. I have always been soothed by the rain. Usually there’s not so much of that here where I live, so it’s a good thing longer tracks can be found on YouTube and Spotify that I can play softly in the night as I am trying to charm sleep as well as the other self-care elements to rain down into my life right now.
Parents and their kiddos with ODD often want to move in different directions. Andy and Tony, all photos by Ariana
Anyone working with our son quickly finds out that he wants everything to go exactly the way he wants it to go 100% of the time…and that he is very determined about trying to arrange things to get exactly that. There are many reasons of course why that cannot be encouraged, ranging from the fact that some of the things he wants to do could get him killed going all the way over to the fact that other people want their personal property to be regarded and respected a certain way, and many other reasons in between.
Token systems and other reward based systems will only go so far with Tony because there are times where what he wants is just so much more important to him than anything else he can be offered. And yet after years of working with him on his ODD associated behaviors, what we have found is that we are most successful in helping him create new habits in this area over time if we use ABA related approaches.
What I am going to outline today is what we have been doing using ABA to address his insistence on touching items he’s been told he shouldn’t touch for safety or other reasons. The base portion of this idea was mine (creating items to work with that looked like cleaning chemicals or medicines that could be left out that would actually be safe for him to consume if he moved quick enough to avoid blocking efforts and got them in his mouth), with Casandra offering recommendations for using timed intervals to track success and offer reinforcements, and with adjustments for how we were going to view task mastery being made by the current clinical supervision team.
The nozzle on this “cleaner” bottle is broken because Tony got angry during a session, grabbed it and bit into it before either Casandra or I could reach him.
This is a task I started first in habilitation hours working with me, and we moved into Casandra’s shifts for generalization with another person. What I did was save bottles from actual products that had been used up, cleaned them out, and then filled with vinegar water and the appropriate food coloring combination to make the items look the same as the actual products. I added the vinegar so that if he did get a mouthful it wouldn’t taste good. I felt like this was important to discourage him from thinking that cleaning chemicals and other items taste like water.
Whoever is working with Tony will point out the items to him, tell him we don’t want him touching the items, and that he will get a few skittles every time the timer goes off and he has avoided touching them. For the ABA programs in particular, because we are trying to emphasize that he shouldn’t ever be touching cleaning chemicals unsupervised at this point or ever try to put them in his mouth, there has to be a 100% success rate for a period of several days before a particular time interval is mastered out and moved up to a longer interval. Currently during Casandra’s shift, he is progressed up to where they are working on 6 minute intervals.
While the timer is on, Casandra is working on other tasks with Tony. What we find is that if he is angry or upset about something, he doesn’t care what kind of treat we’re offering, he’s still going for those items and trying to shove them in his mouth. But most days we have far greater cooperation with him on this using timed intervals and reward reinforcers than we would for any other method or technique we could use.
Casandra taking data
getting skittles for not touching
Tony and Casandra yesterday playing tickles while working on one of his therapy programs designed to expand joint attention at the same time as he is being asked not to touch the designated items- this helps ensure a more natural setting for this task. Casandra is one of the tallest members of the therapy team.
He doesn’t always want to pay attention when being told what not to touch, and Casandra sometimes has to reposition herself to get in front of him because he often won’t look at the items at first when she asks him to so that she can deliver the safety instructions.
Last Friday, I spoke with my sweet Andy and let him know I would need his support for a couple of days to expand this program to bathroom and bedroom items while Tony was getting his bath and I was doing my makeup. I chose to start the time intervals at 1 minute because there are so many more items up there we are asking him not to touch, and when the temptations are higher, the reinforcers initially need to be coming more frequently because he’s working much harder to overcome his impulses. Andy provided support helping Tony establish this as our routine, giving skittles and verbal instructions to our son while I put on my makeup. The first day, our little man earned skittles on all but 4 intervals. This was a massive, massive improvement on what was happening previously. The second day he earned skittles for all but two intervals.
Andy giving Tony skittles for staying in the bath and not grabbing things he was told not to.
The types of things Tony shouldn’t be touching, the palettes and brushes I was planning on using the first day we ran this program with Andy in the bathroom.
I increased the time on the third day, because for the items I have out upstairs available to him that he has been grabbing they are generally less toxic, so I am focusing on moving up the time at around 80% mastery. I have added 30 seconds every two days because he’s consistently hitting that mark, and right now we are at 2 minutes.
Tony pretending to sleep (the only type of pretending he will currently do, he uses fake snores and everything) headed in to take the bath, and he’s being very good here about not going into my closet and grabbing clean blankets (though he did pull up my sheets, which he knows I don’t like, and I let that go, because we’re focusing on not touching for right now).
I think it is important to note that every individual is different, and that at least when it comes to Tony, it is important to realize that a person can’t work on controlling or changing every single one of his dangerous or less desirable behaviors at once. If too many increased expectations are placed on him at the same time, he defaults into a position of refusing to cooperate with anything regardless of the rewards offered. And he also needs time to control other things in our world. For example, the first day I did skittle reinforcement for not touching certain bathroom items with him by myself, after we came down from the bath he was expressing a bit of discontent and he wanted all the lights to be either on or off exactly as he wished. I let that go, because the best way to increasing his overall cooperation is to give him control over something when I can that is safe or not important to whoever else may need to be using that space also.
For our son, explanations of why he shouldn’t touch something don’t work. Asking him to think about what he would want if he were the person owning the stuff he was grabbing rarely works either. I am not big into punishment, but negative consequences such as restricting access to items only works if they are judiciously used, otherwise he gets angry and we loose all cooperation- so I use this type of technique only with situations that the resulting outcomes for him doing what he wants could be the most serious over time.
Success with the type of ABA program we are using to help increase Tony’s cooperation with requests not to touch certain items entirely boils down to consistency. Some days he’ll choose to try to grab more items, and some days he’ll not want to cooperate at all, but when consistently applied, these types of ABA techniques have over time helped shape a higher level of cooperation than we would otherwise have.
The week in makeup achieved while adding this program to our morning routine. Honestly, at points it was a bit hectic trying to do both by myself with the frequency of the reinforcement, but by the time we hit two minutes today, it was feeling a whole lot smoother…
July 16, 2021, me looking like calm instead of created in chaos. Photos by Ariana
Truth is, I planned on writing about a different topic this week. But at this point, I’ve tried to drown my frazzled in about half a cup of Cherry Garcia and not quite managed to fully find, rescue, or resuscitate my tranquil…so I figured this was as good a week as any.
Even when I put up an entire picture, that’s just part of a moment on display, never even the full scene and certainly not the entire story. Roughly half of the year, I get up early enough to put on my make up before heading out with Tony to do his first community safety walk of the day. But this time of year, when the sun is set to boil and the concrete quickly sears, we head out quickly to start our walk during that short window of the early morning hours where the temperature is still in the 80’s, returning home often in the low 90’s.
Once we are home, I make him a protein and spinach smoothie and then we head up to my bedroom so that I can do my makeup while giving him his morning bath. The story that follows here is nothing new, though it may be new to you…many moments like this have been what is behind the reality of every success and every scene each of you has read about on these pages.
After Tony tells me on his AAC device that he needs help taking a bath, we wait at my door for him to ask to open it. Usually he picks the more blunt “move please,” and I have to prompt him to ask more politely. I might get a “no,” “I don’t like it,” or another “move please!” After I refuse to open the door until he asks in a manner generally deemed to be more respectful, eventually we get down to a more polite “Can we go this way?” or “I need help opening the door.” I have to keep it locked because otherwise he’d try to push past me and open it himself to skip the communication component.
Once in my room, he proceeds to run to our closet and pull out every clean blanket. Their fibers are gummed up like felt with the memory of every “stop,” “no,” “don’t do that,” and “leave those in the closet” that has ever spun out of my lips. Today, I couldn’t even get them folded between the attempts, and I made at least four trips back into my closet. Some mornings it is more.
This was the bathroom floor today *after* I soaked up as much water as I could with a bath towel…
As he walks towards the bathtub, he tries to grab a comb he shouldn’t have. I take it from his hands. He grabs a bottle of shampoo and puts it in his mouth. I pull it from his hands. He grabs another comb. I pull it from his mouth. He grabs Andy’s dandruff shampoo and puts the top of the bottle in his mouth. I take it from his mouth and hands. He grabs a water bottle, dumps the water in the tub, and puts it in his mouth. I take this, and he grabs a tooth brush…each of these actions is punctuated and separated by varied forms of unrequited “do not’s.”
This continues once the bath is underway, with him getting out of the tub to repeatedly grab items he’s been told he shouldn’t have. He gets back in the tub and I rub a primer on my skin. He gets out and grabs my phone. I pull it out of his hands. He gets back in the tub and I prep my eyes. He gets out of the tub and grabs one of my eye shadow palettes and puts it in his mouth. I pull it out of his mouth. He gets back in the tub and I get a transition shade on one crease. “No” has become our soundtrack, long forgotten are the more care-free moments of the early morning hours where I danced to “levitating” while brushing my teeth.
Instead I have made up with chaos and I am once again trying not to slip on the tile as we dance our way through an attempt to sparkle up my day and clean the sweat of the morning walk off of our son. Because usually the floor is pretty flooded by the time Tony’s done because he never tries to dry off before he jumps out of the bathtub to try and grab something he’s been told is off limits.
Forged in the midst of chaos
Definitely waded through chaos to get here
Some days the full picture shows the lingering emotional after effects better.
This is just 40 minutes in the day of a family with a loved one who has Oppositional Defiant Disorder (ODD). For our little man, this is how he has been ever since he was about two. ODD is common in kiddos with ADHD, Autism, and Sotos Syndrome.
I have had more than one therapist ask over the years why I hadn’t had Tony officially diagnosed with that. “Doesn’t he have enough diagnoses?” I would say. Besides, the only accepted treatment for ODD is ABA, and he’s already getting that. And, then he will have people who will look at him and just automatically refuse to give him any sort of chance to see good in him. And people will look at me and automatically say he’s got to be this way because of something we as his parents did. Hopkins medicine still lists parenting techniques as a possible cause of ODD…and I find that particular theory so offensive and not rooted in the reality of what is going on with individuals with neurodevelopmental disabilities that we’re just going to have to leave it there for now.
Honestly sometimes the only thing I can do about any of this is try and have a sense of humor about it…
Recently we asked Tony’s developmental pediatrician to make sure his medical records were documented in regards to the ODD symptoms for the sake of ensuring adequate documentation for ongoing medical necessity for ABA when it comes to his insurance benefits. Tony of necessity has been receiving therapy services since he was 15 months old, and he will undoubtedly need years more of that kind of support.
Making sure this was documented last month didn’t re-write what has already been, because this was there all along and everyone who has worked with our son has experienced these types of behaviors. If anything, I would hope it gives each of you a more complete picture of how hard everyone involved with our son has had to work for him to be where he currently is in terms of his skills. And perhaps it might give you the story behind why even my most enjoyed pursuits can’t ever be moments that are completely relaxed.
Working on bringing my world back into balance. Photo by Ariana
My world feels tilted off balance sometimes. I feel like I am constantly having tough things thrown in my direction and sometimes all of that dodging and swaying back and forth to manage all of it and stay standing can leave me feeling emotionally dizzy. Sometimes, that is just life, but it’s definitely life when living in high-stressville. Nobody really gets promised an easy ride in that town.
A couple of weeks ago I had a few days where I tried Lexapro to see if that could help me stand a little bit better right now. For me, as I discussed last week, it certainly didn’t work out that way, but I honestly am really grateful that I had the experience to feel some of the possible side effects of that medication first-hand. Sometimes personal experience is much more valuable for teaching empathy and awareness when it comes to what loved ones around me might be experiencing if they are on these medications.
Sometimes these medications may help with one problem a person is having but cause another one that can be just as damaging to their quality of life and mental health. I’ve had insomnia before in my life, so for that particular side-effect to be so intense was a lesson manual I have already been through, and it’s a suckfest that’s for sure! Being unable to sleep is a little more worrisome for me now though because for me in particular it seems that getting a certain number of hours of sleep each night means the difference between my POTS being well-regulated or not so much, but this side-effect can have an incredibly negative impact on anybody.
The wave of intense chemical induced anxiety that came with the Lexapro, however, gave me a fresh perspective on what it would feel like to have a brain submerging a person in that on a daily basis. And, it was quite frankly awful adding that on top of my already adrenaline heavy state at that time. I do already have a lot of situations going on in my world that can put a person in fight-or-flight mode. Typically I can do mindfulness and breathing exercises to mitigate that and when I’m feeling worried or scared about something, the most my heart rate will go up is 5-10 BPM. If my mindfulness game is really on point, it won’t go up at all. While I was on the Lexapro, the elevated heart rate was what it was and no amount of mindfulness or burning off excess adrenaline with physical activity was bringing it back down. And because it was aggravating my POTS, I couldn’t do as much physical activity.
And, I have to say that experiencing on that medication the side effects of reduced libido and inability to orgasm was also as unwelcome as it was edifying. I think there is perhaps too much societal stigma for people maybe to openly discuss that, but after my brief stint on that medication I feel like it’s something more people should talk about and be aware of because perhaps a partner or spouse is on that and it’s important to know that this is what they could be experiencing in their quest to improve other symptoms but might be too uncomfortable talking about it to say so. I think this knowledge could prevent a lot of misunderstandings and allow partners to better support one another if that is the experience that is being had. Which is why I decided to share that with each of you, so that you can be aware too in case you were not.
Right now, I’m focusing on trying to break each day into smaller pieces. To burn off the adrenaline when I can. To sleep when I can. To focus on taking time to write about everything I have to be thankful for even in high-stressville when I can. To take care of me as best I can, because being able to do that means being able to take care of the ones I love. Sometimes none of this is easy, and none of it falls as neatly into place as a group of typed words. Lexapro certainly didn’t make things easier, but I definitely learned some lessons from it that will help me bring a better version of me to loved ones around me who are on this medication. And that is something to be thankful for even in the midst of something that could otherwise appear to be a failure.
Long ago you first observed our son during your internship, but when you became the lead NMT therapist on his case it was under pandemic conditions using telehealth that I honestly never expected to be successful. You’ve been in those sessions. You remember what the first few weeks were like (thank you for not giving up after that, BTW), and I think we both can agree it ultimately ended up being much more productive than it could have been. Thank you for being so patient with our son and with me during this process. I am grateful for your positive attitude, and really appreciate that you always find something to praise Tony for. Thank you for working with us to help prepare him for a transition back to clinic, I can see each week how much care and consideration you have put into planning for both that and transitioning me out of his NMT sessions. I am touched that you care about his comfort when it comes to masks. We are so very grateful for you and the work you have been doing with our son and our family.
Fabulous Team Member at our Local WalMart Pharmacy
Thank you. When we came in this past Thursday and one of our scripts wasn’t filled as previously promised, I really appreciate what you did in expediting that and for being so understanding of our needs as we were working with Tony on that trip. He was already angsty because he saw someone with french fries at the McDonald’s up front and, having tried to raid their bag, felt like that should have been the whole purpose for our trip. I know you’ve seen us before so you may remember a little bit about how interesting things can get when he’s not feeling happy with an unexpected wait. We were just trying to get what we needed before his denied desire for crispy fried treats caused him to loose all interest in cooperating, so again, thank you. And thank you for not commenting when he kept trying to stick his head under the plexiglass partition 🙂
I am not recommending any longer pieces this month because I really believe it is important for those of us who might not be aware to read these articles and reflect upon how we can apply them to the way we think and discuss disabilities matters within the community. As a mother, I often tend to use the language others are most comfortable with when I am trying to talk to them about my son. Both the terms ‘special needs’ and ‘differently abled’ were first used in my presence by either special education professionals or therapists working with my son. I know I personally will use these terms sometimes when I am talking to people in the community because I have noticed that they tend to view them as being a more polite way of talking about my kiddo and I often just don’t have the energy or the time while I am trying to help him navigate a public space to do anything but go with the peace-keeping flow.
So in pondering this, I feel like the best place each of us can start is with how many disabled individuals themselves perceive the term “special needs.” I think it is also fair to say, and I mentioned this last year when I was discussing the term “differently abled,” for someone like my son who has some differing abilities that are not considered less-than, and who has some more specialized needs that typically are not seen within the community, I personally am not offended by the use when I encounter it in others. Logically I look at these terms and I see in them things that apply to our son, but I also recognize that it is incredibly important for us to be aware of language we are using that can leave others feeling diminished or patronized. You can click on the titles above for links to the articles. The first one is written by a reporter, the second is written by a disabled activist and little person, and I am including a link HERE to an op-ed piece she did for CNN a few years back that I feel adds some important insights into the ways the systemic perceptions around terms such as “special needs” and “differently abled” can contribute to a culture of ableism.
When my PCP prescribed Lexapro last week, I looked up the side effects and was concerned about an initial mention that individuals with certain heart conditions shouldn’t be using that medication. A quick look on the National Institutes of Health website turned up this article, which mentions a possible therapeutic benefit for patients with POTS, which is a condition I have. I am not expecting any of you who do not have this condition to read this article. What I am asking is that you remember this and share it with anyone you may know who has POTS. I know this was never mentioned to me, and it may not be the first thing somebody else’s medical team is thinking of to try either.
That being said, I also think I need to make it clear that I had to stop taking this medication four days in, and I think it is important for you to share what I say here also if you are sharing this article with someone you know who has this condition. What I noticed was the first day an immediate improvement in my heart’s ability to maintain a steady heart rate without rising over time as I exercised that was similar to what life was like for me before I developed symptoms for POTS. But it left me far more wired than my adrenaline was, I litteraly couldn’t get to sleep, and had to take the max dose of hydroxyzine Hcl for me as given by my allergist to overpower that enough to get 4 hours of sleep. By comparison, it only took four the day before I started the Lexapro to power through my adrenaline burst and sleep for 7.5 hours.
By day two I was super irritable, and by day three my heart rate was rising across the board and was going up to 103 in bed at night. By day 4 a massive fog of anxiety descended that was like caffeine on steroids and my heart rate continued to rise (highest spikes happening 3 hours after I had taken the Lexapro) and my heart rate was rising during movement in ways it hasn’t for a few months now after my intensive focus on lifestyle changes. Now, it is important for me to note that typically when I am feeling anxious, there is pretty much always a reason, and most people would agree it’s something to worry about. Having a sense of anxiety this unrelenting and intense unrelated to anything I was thinking or feeling in and of itself would have been rough, but the raises in heart rate and decrease in movement tolerance were deal breakers, especially when coupled with the inability to sleep.
Once I stopped the Lexapro, my heart rate immediately returned to normal. I suspect my body probably has a happy place for that medication when it comes to my POTS that is a significantly smaller dosage than the 10mg I was prescribed. My body can be very sensitive to medications. Some things, like Fluconazole that are well known for their side effects go over in my system like a massive yawn…no fuss, no side effects, no problems. Other things it gets dramatic pretty quickly. So my point here is everybody’s system is a bit different. This may be helpful, it may be helpful only with dosage tweaking, and it may not be helpful. Each person with POTS seems to respond to things a little differently. But I think it’s important to share, because it is so much cheaper than the medication (Corlanor) that was originally suggested for me. I don’t know many people that can afford that medication (we certainly couldn’t), to be honest, and you probably don’t either. So I share this so that you can too if need be.
I believe in keeping things as real as possible here, bearing in mind of course that I am committed to respecting the privacy levels requested for everyone who is in or interacts with our family. When I put pictures up showing some of my makeup, while my shots are not filtered or Photoshopped, I do often pick images using lighting and head angles I prefer. That is what is real about how I present myself. The above image was taken in lighting that shows every line typically on my face plus my facial hair. Sometimes when my hormones are out-of-whack that gets even longer, and if a person really wants to encounter my snarky/grumpy side, they claim to be a vendor e-mailing me an offer for a free facial hair remover in exchange for a review (not now, not ever do I participate in that kind of system BTW) and tell me that I was only offered that because I needed it. Yes, that has actually happened. The lighting in this photo does emphasize my facial hair, but normally it is not so obvious in person or on film.
I try to write as accurate a picture as possible of what we are going through for those things that do appear on these pages. Sometimes things happen off scene that don’t just rock my boat, they flip it over entirely and leave me trying to find a way to get to shore. I run the best mental health game I can, but life has been rapidly launching an assault of high-stress cannon balls at our circumstances for years now. I can’t seem to get passed one high-impact event before I’m getting swamped by another.
May 23, 2021. My eyes are very sensitive to light, so sunlight causes me to squint heavily, which increases the appearance of lines around my eyes. And the squinting always makes me look grumpier than I feel, so I prefer not to use pictures taken in that lighting.
Earlier this week I had a bit of a tipping point for my boat. Something happened that will certainly be remaining off stage here, and it was like something just broke inside of me. My body was producing so much adrenaline I couldn’t sleep, not even after taking a cocktail of Benadryl and melatonin. I felt like I had been drinking 10 cups of coffee every hour for days- and I haven’t drunk coffee since my standing heart rate initially went up in January (the current status of my POTS is that it can be managed with lifestyle choices, but part of that is that I can’t really tolerate caffeine).
Yesterday morning I called and asked for an appointment with my primary care doctor, and they got me in for a telehealth appointment just an hour after that. As I told K.L. when we were talking about this, none of my usual yoga/meditation/deep breathing/mindfulness/CBT hacks were even touching this. I felt like I was trying to put out an engine fire on my boat with a Q-tip. I think my body just hit “SOS- Way Too Much Stress Going On Here!!!” overload.
So I talked to her about what the best non-addictive options would be for providing me some support over the next few months. Typically I might have waited a couple of weeks to see if all of those self-care pieces could help calm my system down eventually, but I noticed after night three of sleep being suppressed by all those stress hormones that my POTS was getting a little grumpy and my standing heart rate was starting to go up higher than I would like in comparison to my sitting or laying down heart rate. So I decided being as proactive as possible would be the best thing to prevent exacerbating my POTS or any other element of my health while I am working through this. So after explaining my circumstances, my health concerns, and my desire for this being only a short-term support, K.L. recommended we try Lexapro for the time being.
Today, June 25. I typically don’t have my head turned showing my right side fully because I have a few moles on my right cheek. I spent years feeling less pretty because of them, and while I don’t think much about them anymore, it’s just become an ingrained posing habit. In this picture, one of them is visible but less obvious because I am wearing medium coverage foundation.
I do not believe you can medicate away life. Some things are just hard and they are going to be hard for anybody. And some times things can just be hard for long enough anybody can find themselves in a position of needing a rescue ship. And that is OK. I like to think of myself as a survivor, and part of that is a recognition that it is important for me to be honest at any given moment about what I need, not just for myself but for my family. If there is a tool that’s going to help me keep my ship afloat, the best path to survival is reaching for it right away. In January I knew what was happening wasn’t directly related to anxiety. But this week I knew that if I didn’t quickly respond to the maelstrom of stress hormones that was sucking me in despite my best efforts to navigate away from it, my overall health boat could end up getting sucked under and broken apart on the rocks of life.
When it comes to things that I share about what is going on in our world, I know sometimes other caregivers visit these pages. So I want to make sure I am always as real as I can be with them and with each of you about the impact all of this can have on a person’s mental health at any given moment. Sometimes the pressures can be handled with lifestyle hacks, and sometimes they can’t. Either way, the best thing for anybody in this position to do to keep their boat from being swamped on the sea of life is to respond as quickly as possible with whatever level of support is required to keep themselves afloat.
Tony, who fell asleep after a long day while playing apps on his tablet at 9:24pm, May 2, 2021. Photo by Ariana
More than three years ago, we walked out of our son’s developmental pediatrician’s office, where his “…extreme hyperactivity and impulsivity…” (Dr. D’s diagnostic report, page 5) led to a diagnosis of combined type ADHD. Medication was recommended, because his symptoms were “…causing significant functional impairments in all aspects…” (page 5) of his life.
Since then, we’ve been playing medication pinball. Pull the plunger of a certain medication, engage the flipper of a certain dose, and try to keep Tony’s hyperactivity or sleep from going down the drain. The past few months we’ve been swapping out plungers and flippers one after another in an effort to increase the sleep score while managing his symptoms, because the Guanfacine he’s been on for more than 3 years now has been causing rebound waking that will keep both of us up for hours in the middle of every night. There’s no way to get either of us a winning score at anything with years of that.
Me, this past Tuesday (June 15, 2021), already tired and only six hours into my day at this point, Tony having woken up two hours earlier than expected/hoped.
So Dr. D began swapping out pieces of our medication pinball, replacing a 1 mg plunger of Guanfacine with .1 mg of Clonidine because that should help him sleep through the night. A month later after bouncing off tons of bumpers because the Clonidine wasn’t controlling his hyperactivity as well, missing most of the increased sleep targets, and spending lots of time awake in the drain we conferred with the fabulous Dr. D and who changed out the Clonidine flipper with a .2mg dose and instructions to call her in a couple of days if it wasn’t working. Two days later she increased the dose to .3 mg. I thought surely that must be enough to tranquilize an elephant, and perhaps it could have been…but it wasn’t enough to keep Tony’s sleep ball rolling long enough to keep us out of the drain for half of the night.
So a little more than a month ago she switched out the Clonidine plunger entirely for 25mg of Trazodone. Helping individuals with ADHD sleep through the night is an off-label use for this particular medication, which is more commonly used to treat depression. About two thirds of the nights we managed to get a sleep score high enough for Tony to reach eight hours before that ball landed in the drain, but the hyperactivity still had us playing a fast-paced response game during the day.
Dr. D’s goal is to get our little man sleeping through roughly 80-90% of his nights and control the ADHD. So, she changed out the Trazodone flipper for 50 mg on June 7, and added another .5mg Guanfacine flipper this week. Right now we’re still playing the game daily, tracking our scores, to see if this combination of plungers and flippers will get us the sleep and hyperactivity scores we want. Right now, the hyperactivity is better managed, but we have had four night’s sleep that ended two hours earlier than desired.
Our days are long. Even with all of that medication, Tony can still be bouncing around filled with all the energy I wish I had, jumping on his trampoline, or playing apps on his tablet until well after 9pm every night. Monday through Friday, our therapy days go until 7pm.
Screenshot of me helping Tony get into his mask from video taken by Casandra for our BCBA, heading into a local Target for public therapy at 6:18pm on June 15th.
I turned 45 last month, and I can honestly say that getting shorted that much every night for sleep becomes harder with every passing year. There isn’t anyone wanting to find the winning combination for how to work the flippers and win this game more than me. So often I hear people ask “isn’t there a medication that can fix that?”
Sure, there are medications, but fixing anything with them isn’t a given. It’s more like a game where we play one shot after another hoping to get a score that’s only just good enough. Medication pinball each and every night, trying to find a way to keep us mostly out of the drain.
This week’s post is going to be super short. As a mom, both of my children hold equal pieces of my heart. Because I respect Hannah’s wishes for what she wants shared on-line, she isn’t as often on the pages of our blog right now. But I am just as honored to be her mom. She is loved and every bit as treasured. And, I enjoy looking at her drawings. She was showing me some of her latest work recently, and I asked permission to share a few of her drawings here. She picked the drawings, and they are shown below. She has asked these photos of her drawings be run without further comment or elaboration.
Drawing by Hannah, based on a photo by Yousuf Karsh of Audrey HepburnDrawing by Hannah of one of our pensDrawing by Hannah of her calculatorDrawing by Hannah of one of our paintbrushes
When you first started working with our son, we were trying to expand his flexibility in working with providers without me present. The last year didn’t end up being the therapy experience we were planning for Tony. I know there were points where the teletherapy programs weren’t easy to implement for anybody. I can’t thank you enough for your patience with him and with me. I appreciate all of the ways you believed in and encouraged him, and I am immensely grateful that you showed up with a positive attitude every week. For all of this and so much more, thank you. Thank you for being an important part of Tony’s growth and journey over the past year and a half.
Linda, TPS, & Kent
Perhaps it may have seemed like a small thing, maybe even something that could have been seen by some as simply good on-line etiquette. But by engaging with me so sincerely back and forth on-line you brought sunshine into a soul just shaking of a period off protective hibernation- enough light to bring out even a few blooms pronged by circumstantial cacti spikes. To Linda and TPS: thank you ladies, I really appreciate you for your kindness <3 . And to Kent, thank you for bringing a bit of a smile to my day with some with your more light-hearted responses.
Some Reading To Consider
Good Kings Bad Kings, by Susan Nussbaum
Of all the things I have “read” over the past year, this is without a doubt one of my favorites. The author of this book was interviewed for one of the books I mentioned last year, “From the Periphery,” by Pia Justesen. I say “read” in quotation marks because I actually listened to the audio book, and I also recommend that you do the same. This book has multiple narrators telling the story, and the version of the audio book I purchased on Google used different character actors for each narrator, which increased my ability to feel the differences in perspective more authentically.
There are a couple of content warnings I need to give for my more religious readers (occasional swearing, brief sexuality in spots), but I am still recommending each of you read this just the same. The reason is that this book gives voice to what it is like being a disabled or mentally ill person in a group or nursing home environment, and there is power in hearing about some of the types of events that can happen to someone in these facilities not just as a clinically delivered breakdown in the news.
One of the characters is raped (graphic detail is not given, just enough to understand the fear and pain of the character), another is beaten, and another character dies as a result of neglectful actions from an employee at the nursing home. These are heartbreaking experiences had by real-life inhabitants of this type of facility (as a scan of past Arizona headlines alone can confirm). Even though we might know these types of things happen, there is power in hearing it in a way that places us in the narrator’s perspective. That allows us to imagine and ponder about whether or not someday it could be us in the same position, and to consider what we would want if we were in similar circumstances.
I think this book broaches some tough topics, but I think one of the most important happens near the end. One of the characters is a wheelchair bound teenager who runs away from the nursing home for a day so that she can have sex with someone she met on-line. This encounter is the most descriptive of any of the mentioned sex acts in this book (though the amount of detail is not significant in my opinion), but I think there are some important messages here also.
Nobody clearly has talked to this girl about safe sex, and I think that is because often there is this view in our society that being disabled renders a person both undesirable and asexual. So she does something that is super risky because nobody has taken the time to talk to her and educate her about these things, assuming possibly that she wouldn’t be able to and that nobody else would want to do that with her. And I think it is important that her perspective is given. We all have the same desires for both physical intimacy and love, and we shouldn’t assume that someone lacks those because of a disability.
Tony, first day back at the new NMTSA location, June 2021, photo by Ariana
Some of you don’t live in Arizona, but perhaps this type of law exists in your state. And perhaps you can contact someone if you have the time to do something about it if you should feel so inspired. When I first read this article, I immediately saw a future version of myself in Ziba, who is taking care of her disabled son. One of our local representatives is now working to try and make changes to this law according to more recent reporting by ABC 15, but it won’t be enough to save Ziba’s home. My hope is that each of us can use our voices to support laws that prevent this type of thing from happening wherever we live. You can click on the article title above for a link.
