Some good things are already here. All photos by Ariana.
My body was humming cheerily this morning after jogging nearly 20 minutes of our outing to practice tricycle skills. I just finished my second cup of coffee, and it makes me think about how much I have to be grateful for even when things are busy. Two long years it has taken to build up enough caffeine tolerance to jog that much and to drink coffee again (like many individuals with POTS, I lost caffeine tolerance when symptoms first emerged).
But more good things are coming, I can feel it. This is a busy time, where meetings and appointments are starting to pop up as we work with our son’s advocate to officially begin Tony’s reentry into the school setting. And there’s a whole lot of other things that need to be done outside of these meetings and the therapy hours I am responsible for providing.
So, this week’s shared happy happening is going to be short: after only working with Tony for 3 days on the motor planning aspect, our little man is able to independently access a kindle profile using a 4 digit pin.
Yes, he remembers all of the numbers on his own. He sequences all the numbers correctly every time at this point and nobody needs to tell him or prompt him for anything on it, plus he’s nailed the motor planning aspect in record time for him. For kiddos like my son who have motor planning deficits, that means their brains understand what they need to do but can’t get their muscles to do it without a fair amount of practice (sometimes a significant amount of practice), and immediate imitation is usually a struggle for an individual with motor planning delays. I was so excited my first impulse was to put a video up before the “not a great idea from the security side of things” warning nipped on the heels of that thought and laid it to rest in the “not the best idea” graveyard.
So, you’ll just have to take my word for it…though certainly other therapists have witnessed him doing it, because he’s feeling pretty proud of himself and sometimes looks downright smug as he shoots one of us a glance that says “I don’t need you to do this for me anymore so I can get into this kindle any time I want!” And as I look forward to more meetings in the weeks ahead, I can see that other good things truly are coming up on the horizon.
Meeting make up. More of that’s on the horizon too, lol! 😀
Tony & Ariana at Funbox Arrowhead before it closed, Photo by Andy
A happy moment can bloom more quickly than expected from the seeds of hope. In my gut, I felt like Arrowhead was the place we needed to do our crowd work with Tony on March 31st. I noticed as we were pulling in that the Funbox park was up and functional, and I told Andy “maybe Tony will be up to walking around the perimeter when we’re done in the mall.”
As we were leaving the work we were doing in the mall, I walked us towards the bounce park. I noticed that Tony wasn’t afraid, and a look of interest was on his face. I walked us up to the entrance, and he still didn’t look afraid. I asked him if he wanted to go in, and he said “yes” on his speech device.
He appropriately tolerated the wait to sign all of the waivers. He tolerated having to wear new to him socks that were slightly tight to be allowed on the bounce structures. He tolerated speakers blasting songs such as “Boom Clap” and “Shut Up and Dance” the entire visit without any signs of distress. He tolerated a gradually increasing crowd of noisy kids and adults, and his behavior was 100% safe.
We laughed and we climbed for about an hour- which is tolerance higher than anything I expected to see when he said he wanted to go in. We slid down bounce slides higher and steeper than slides he’s willing to use at our local neighborhood parks. His happiness lit a spark of joy in my soul, it was such a beautiful and happy moment that I hadn’t done more than hope would bloom and come to successful fruition on a “some day” when we drove up to the mall that day. But for that moment, it was the day and the joy.
Additional Therapy Strategies Being Used:
Within the mall itself:
-using the family bathrooms can help him feel more comfortable using a restroom where there are lots of people and hand dryers present.
-Trying to find a motivating activity, such as eating a very preferred food, can help him associate the environment with positive things.
-He needs to be allowed to refuse to go into anywhere in an environment with that many people to prevent him feeling like he needs to be scared enough to push.
For the Funbox Bounce Park:
-Walking around the perimeter can create a familiarity with the structure
-Bounce houses at quieter events are preferred activities for him, so sometimes preferred activities can be leveraged to increase tolerance of other stimuli that he struggles with under different circumstances.
-Sometimes entering near the opening time for a place that can become crowded helps (for a place where there are fewer people there at first) because the crowd builds around him gradually.
-Leaving while he was still happy. For a kiddo with sensory issues, leaving while they are still calm and well-regulated is the best approach because it assures that the memories of the activity and location will be happy ones. If not every moment stayed happy, trying to leave on the happiest, calmest moment possible can still keep / leave a positive final impression of a location.
Tony pedaling his trike last week, photo by Ariana
A few years ago, before the start of the pandemic, Miss Emily and I were trying to work with Tony to improve his tricycling skills during a habilitative therapy session. At that time, we were still experiencing easily a dozen or more attempts from him to run off per any type of outing. There was zero directional flexibility from him (if you asked him to go anywhere but where he wanted, he could easily at that time engage in 30 minutes or more of a sustained effort to use his full body weight to push to what he wanted), and we had zero compliance from Tony with a verbal request to stop from anybody at that time, even me.
Even with the both of us, we felt like it was too much to safely manage and help him improve his skills given the size of his tricycle (he’s needed an adult-size tricycle for several years now) and we were worried that it would roll in front of a car or something worse would happen while we were trying to keep him safe. So with a pang of sadness, I mentally pinned it on a list of goals for “some day.”
Some day is now. He’s generalizing requests to stop and directional flexibility during community walks to his new RBT quite well. Attempts to run off are dramatically reduced to the point where many outings won’t have any. Any attempt to push past me now just looks like a minimal lean into my upper body that doesn’t use his full strength or weight before he pulls back with a verbal prompt, and even those, they are on the path to total extinguishment within the community. So I decided now was the time to dust off the Dirt King, reinflate the tires, and hit the sidewalks.
Because it has been a few years, he needed help initially remembering how to place his feet, how to pedal, how to steer. In less than 2 minutes, pedaling was back. In under 15, he was doing better with steering than he was last time we tried to help him improve his skills. By day two he was able to pedal uphill with minimal assistance by me, albeit frequent breaks certainly were needed.
I have to jog now to keep up with him on flat or downhill stretches of the sidewalk.
He pedals with focused glee, giggling, whooping, and laughing as he hauls past people out for a stroll. I watched his eyes light up and he gave a verbal “yeah,” his face practically split from grinning as he passed a group of cyclists recently. Almost I could hear him thinking “I’m one of them now!”
He gets off the trike sometimes to rest, or to flap and look at cars driving by. He’s thrown one tantrum at a street corner I wouldn’t let him cross yet because of the volume of traffic, but his overall cooperation with directional instruction equals what he demonstrates on community walks (though he’s been having so much fun he usually doesn’t like being told it’s time to go home). He calmly takes denials for parks we pass that he would like to go to, literally all of the elements for him to maintain this as a leisure activity within the community are present.
Helping him improve these skills and his stamina for uphill portions is easily a one person job now, and I am thankful every day my POTS (Postural Orthostatic Tachycardia Syndrome) has improved enough that I can do that jogging to keep up with him. Kind words from people we are passing about how well he is doing have fueled the joy in my heart. Maybe some day there’s a bike in his future. But for right now, the Dirt King rides again…and we’re both having a blast with it 😀
Some additional therapeutic strategies I am using:
-always bring the skittles. Tony doesn’t care about praise, he cares about candy.
-gently pushing down on his knees at the speed he needs to go when he needs to start slowing down, paired with verbal instructions and reminders of why. He has motor planning deficits, so his muscles need help feeling the motion of the desired outcomes.
Why could this still be a useful activity for an older kiddo with developmental disabilities? (you can click on the title for a link if interested)
To the EMS Coordinator for the Buckeye Valley Fire District (who will remain unnamed here) for helping me resolve a longstanding billing concern related to our son’s ambulance ride to the ER back in 2016, THANK YOU <3. For those of you who are family or who have been reading here for a while, you already know I have nothing but loving to send the way of our local fire team as it is for everything they did that night. Members of their team even started mopping the blood off my kitchen floor while we were discussing the need for an ambulance ride after they got a bandage on Tony. In a perfect world, I would be perfectly on top of every little detail of every circumstance in our life, but stepping into the world of parenting a child with significant needs can be beautiful, but rarely perfect, and almost always overwhelming when it comes to the sheer volume of things coming at me that need to be taken care of just for him alone. You have my deepest gratitude for taking the time to hear my need and immediately do something to help me address it.
A Note On Content
I took time off from writing posts here this past month, but certainly not from therapy, and definitely not from life. We’ve been busy…really, really busy! And, there’s still a lot going on behind the scenes, and some of it is just the sort of thing that can suck all the best emotional colors out of one’s day if allowed to do so. And just for me personally, I don’t want to loose focus on the good stuff, because it’s still going on too and just quite frankly, much happier to look at. I’d just really rather soak up and dwell in the positive (may it start to flood in rather than trickle!), so posts are resuming, but they will be very short, and just mostly highlights of something happy. Because we’ve reintegrated ABA into our schedule (which is going great, BTW), I haven’t really had much reading time with everything that is going on, and in keeping with that my recommendations are going to be short and focused on nothing heavy. Much love, Ari
I was born in the 70’s (I’ll be 47 this month), I grew up in the 80’s, and many of us here know I have a longstanding love of hair metal bands just in part because that’s what I grew up listening to. And I make no apologies for any that. This article is really something I recommend for one reason though: this man’s attitude about life as expressed in the article rocks every bit as much as the music, and it’s a great example for handling chronic illness or other difficult circumstances of a lengthy duration.
I was listening to this while I was doing dishes, and very much liked the strategies she recommended for dealing with negativity, either within oneself or when it is coming from another. I have found it’s pretty easy, when one’s life is in crisis mode, to feel like the lemons and grapefruits are just coming in faster than they can be turned into a sweetened beverage for others to drink, so to speak, and to struggle to handle every stressful moment with grace. And definitely when I feel like I am living in that space, the negativity rolling off of someone else can impact me more, so I found this to be a very useful and timely episode.
*All photos for this post were by either Ariana or Andy
Friends, Family, & Loved Ones: I am going to be taking the next month off from writing here. I am stressed. I am overwhelmed. There’s a lot going on, and we’re once again needing to support a more beefed up therapy schedule as our son’s new ABA provider has begun services this week. There are some important things going on that need my full attention and I am in a self-care deficit.
So, I am taking a writing breather for the next month. But, before I go, I just want to leave you with a couple of the happier therapy moments from the past several days.
We’ve been working on expanding our little man’s tolerance for new things, and recently he was willing to try seasoned curly fries for the first time. He was also willing to try climbing on a twisting ladder that scares him. Trying new things is very hard for him, and there once was a time where it would take him months to be willing to even touch new items that were purchased for him. This was actually the first time I’ve asked him to try curly seasoned fries, though he has had Taco Bell’s seasoned fries when they carry them. Just even the shape and the different fast food chain are enough for him to reject an item for too much new-ness or being different.
We also were able to take him in to the Phoenix Zoo this past Sunday, and weekends (especially when the weather is nice) are much more crowded. I gave him almost complete directional control because of the number of people there, and he was able to stay calm and tolerate it fairly well because of that. The hardest bump for him was when we had to go into the guest services area because I had recently renewed our membership, and even though the current one hadn’t expired, their system wasn’t accepting the card because of the renewal, but even that he tolerated with only a minor outburst. He also stood in a bathroom line near their Mandrill exhibit for roughly 10 minutes (a bathroom with a hand-dryer in use) and he was calmly able to do what he needed to in there. For me, there is so much hope in what I saw in those happy moments, so much hope for even happier moments to come.
Practicing sitting calmly in a library in Goodyear, we sat for more than 20 minutes, this is only the second time we’ve done therapy work at this location. Photo by Hannah
My loved ones, I am going to keep this week’s post pretty short. I’ve been eating stress for breakfast, lunch, and dinner lately and I’d like to go regurgitate a workout and hunt through the internal wreckage for some glimmer of inner peace outside of the glittery shimmers gracing my eyelids. Even when that’s how I’m feeling on the inside, we’re still progressing through therapy goals and moving forward, and I am ever grateful for that.
As our little man has become calmer in and more tolerant of public spaces, we’ve being gradually increasing the level of functionality. Some trips he will push the shopping cart for close to an hour, we’re now starting to ask him to locate items before we’re in the aisle that contains it, we’re expecting him to carry his speech device the entire time, we’re expecting him to follow another member of the party (scanning and looking for them if they are out of sight), and we’re expecting him to practice sitting and waiting for periods of time approaching 20-30 minutes. We are continuing to work with him to enter bathrooms that have hand dryers when others are in them, and he does need someone giving him verbal prompts some of the time to maintain awareness of others near him so he doesn’t bump into them with the cart.
Some of these pictures were taken by me, but if I’m in the shot, those photos were taken by Hannah. These are a few pictures from last Friday. He’s been working very hard, and as always, it is an honor to be the mother to both of my beautiful children.
Following, looking for, and finding Hannah at a local Target.
Waiting with him and trying to talk him into going into the main bathroom because the family bathroom is closed, sometimes he needs frequent reminders and I have to stand in front of him as a physical prompt that he can’t go into certain places. It took him about 10 minutes to feel comfortable going in.
I give him skittles randomly for walking and pushing the cart safely, I walk next to him to help direct his attention to things he needs to avoid running into and so I can grab the cart if needed. Sometimes I still have to prompt him to ask for things, here he just wanted to grab a bottle of water instead of asking for it.
Tony, standing and looking at a carnival event near our home, photos by Ariana
A couple of weeks ago, there was a carnival being held on the ballpark field of the elementary school near our house. I think part of optimizing efficacy for what we are trying to help our son achieve is being aware of events occurring in our neighborhood and integrating them into his therapy work. And so, I told Tony we were going to be walking past it on our daily community safety walk. I told him we wouldn’t be going in to the event itself, and we didn’t have to stop and stay in the area if he didn’t feel comfortable, but we would be walking by.
What I was leveraging to help stretch towards and increase our son’s tolerance of the crowds, noise, and visual sensory input was his comfort with the environment itself. This is an area he has been working in for years and he has a high comfort level with it. Tony likely would not have been quite so calm had he been asked to walk so close to this in a neighborhood or commercial complex he was unfamiliar with.
As it was, he followed all safety instructions and by the time we had reached the other side of the area we were walking around, he was curious enough to initiate a couple pauses lasting some minutes each where he just looked at what was happening at the event. Anybody driving by just seeing us standing there wouldn’t realize what that moment signifies for him, for me.
Two years ago, this same event had him on edge and ready to flee just seeing it from a couple blocks away. We didn’t walk anywhere near so close to it on that occasion.
Diverse parents of individuals with Autism (or Sensory Processing Disorders) and individuals who are themselves on the spectrum don’t always agree about how situations involving aversive stimuli should be handled. One of our son’s therapists recently asked my opinion about a post she had seen where the individual expressed their views that asking someone to engage in therapeutic tasks to increase their tolerance of aversive stimuli was not appropriate. I told her that while I respect the right of this individual to determine these matters for themselves, I view the matter differently.
This is, of course, just my opinion- given both as a person with some sensory differences and as a parent of a child who presented with significantly more severe sensory differences. Our son, if we hadn’t engaged in years of sensory integration therapy, would not be able to tolerate or access any environments within the community outside of our home. Environments like that school ballpark or grocery stores, he can now interact in safely, happily, and functionally because of the work we have done. I feel like this has increased both his happiness and his confidence, and it has certainly decreased the difficulty of doing certain things as a family.
And in his earlier years, he couldn’t even handle much of the sensory stimuli in our house either- so there wasn’t any place anywhere that he could avoid feeling distress of that nature. And for some other types of sensory differences, such as his inability to tolerate Band-Aids being on his skin, in addition to the medical and safety challenges that presents, it prevented him from functioning safely in an environment such as a school where any accident could cause an injury that he wouldn’t allow to be bandaged. So, I feel like therapeutically helping navigate all of this was the best path forward to any type of sustainable happiness for him.
I personally think avoiding things strengthens the fear, and my personal take is it’s better to find a way to help an individual adapt whenever possible because many things cannot be avoided. Yes, there is on-line shopping- many of us know my history with Amazon and what was going on symptom-wise for our son that necessitated doing that much of our shopping via the internet. But I still think a richer quality of life is to be found by increasing a person’s ability to engage in as many areas of the community as possible. Grocery stores, clothing stores, pharmacies, doctor’s/dentist’s offices, schools, et cetera are all part of accessing necessary services for things he needs that can’t always be found on-line.
Now is going to a carnival strictly necessary? No, of course it isn’t. Perhaps he might have chosen a different path to walk on his own, but I did make sure he knew that if he really didn’t want to be near the event anymore, we’d walk a different direction. Crowd tolerance of this nature is a goal aimed at increasing quality of life for the rest of the family- because for an individual that will likely never live independently, that is an important goal too- so we can participate in things like this together that matter to other family members when another caregiver cannot be found for him (as frequently is the case).
This year’s goals? Walking by carnivals, carousels, gaining comfort in increasing crowd sizes.
Next year’s goal? Walking into that new Mattel Adventure park when it opens. But only if Tony feels comfortable and ready to do so.
Even when all of the scheduled therapy sessions have to be officially canceled for an illness.
Tony woke up one day this week with a cough sounding like a seal bark, and as a mom who nursed Hannah through several bouts of croup when she was little, I felt pretty confident that I recognized what was going on by the sound of his cough. But we still did two COVID tests on separate consecutive days just to rule that out for the comfort of everyone who might need to interact with us, because those are the times we live in.
Sometimes I have to look to what he does- like “is he holding onto that cookie when he’d normally be eating it immediately?” – to determine some of his symptoms. Photos by Ariana
I don’t know that any child who has croup feels great. Tony’s only had it once before, and his case was milder than any of Hannah’s. I would hold her upright wrapped gently in my arms all night in the Lazyboy we had at the time for the first couple nights with each of her infections because her breathing was so rough. But, when a kiddo struggles with wanting a rigid routine and can’t handle transitions from one activity to another well (or has sensory differences like tactile defensiveness), the types of things a parent needs to do to help them through that kind of illness can be pretty distressing for the child. And a parent of a kiddo with profound sensory differences cannot count on being able to reason with the kiddo and gain calm cooperation for what is needed, but is more likely to encounter a more intense fight or flight response no matter how gently the matter is approached. Which is part of why we do some of the tolerance of stimuli work we do in our son’s habilitation programs, so we can be ready for moments of illness like this.
With Tony, we’ve also done a lot of work with him since the start of the pandemic focused entirely on tolerating changes, with me continually emphasizing to him that change is the actual routine, that it is the only thing we can truly count on happening in life. In the past few months, the improvements in his ability to maintain emotional regulation with change has really shown through- even with all the stress inducing happenings going on over here. I know I mentioned the recent compliment a few posts back from his music therapy team that they’ve never seen him be so flexible as he has been recently, but they also let me know a couple weeks ago they were mastering out his self-regulation goal for music therapy and advancing to focus on cognitive-motor regulation (that mind/body motor planning connection).
For all of that, when he’s sick, I have to think therapeutically about how to frame a necessary change so that he’s more likely to accept it. That first morning, we needed to get him out into the cold air for his lungs, and I thought the best chance of that would be to tell him we’d be eating his morning chex out on the porch (so I combined a change in location/need for clothes with a part of his morning routine he loves without changing the time). When he wanted to keep his clothes on to earn a treat after we came in (something we’ve been doing in hab to expand his tolerance, we’re currently up to three hours) I let him keep them on as long as he wanted without setting a timer (I think it was what he wanted to do because it gave him a sense of routine). We weren’t actively clocked in and doing therapy, but I recognized he was looking for a sense of normalcy, so when he felt like he was ready to take them off, I gave him a treat because certainly it’s something he wouldn’t have normally done, to keep his clothes on after coming inside.
Sometimes the things I observe while providing care as his mom let me see how I can improve the efficacy of things I do in therapy. One of my ideas for how to help him learn tolerance for COVID testing was using a Q tip to swipe in his nose to practice, and we first started with him looking at the Q tip, than touching it, then letting me touch his nose, then 1 second in each nostril without moving, moving up to swiping it, then progressing the time, etc. One of the things I noticed while COVID testing him this time is that for some brands of at-home tests, the swab has nowhere near as much padding as a Q tip, and so it creates a pokier feeling in the nose for a kiddo with tactile defensiveness.
I was able to talk him into cooperating (really the cookies did the talking), but it occurred to me we should redo the entire desensitization sequence in therapy with Q tips that have most of the cotton pulled off to help him better acclimate to all possible real-world sensations for that. I also gave him permission to hold my hand and wrist, so he could feel like he had some control over what was happening.
He won’t always let a provider do something as seemingly simple (because from his perspective, it’s not simple, those sensations were once quite aversive for him and still can be less comfortable for him) as swabbing his nose for a COVID test or putting on a Band-Aid (as we saw when he got his second COVID vaccine dose and his arm was accidentally scratched by the needle while the nurse was pulling it out). He was willing to let me put the bandage on, but not the nurse. Despite the bleeding, he wouldn’t keep it on for more than the 15 minutes we’ve been working on for hab.
Shown above, a picture from the second COVID shot and a picture of his bandaged elbow from last night.
Unfortunately for our poor little guy, he ended up with an infected sore on his elbow towards the end of the first day of this current illness that keeping on a Band-Aid would be preferable for. We talked about why keeping on a Band-Aid as long as possible would be a good idea, I gave him skittles and praise for keeping it on as long as possible (the first couple were still removed in under an hour because that is what he wanted and it is always better to gain his cooperation if possible in this type of situation, but it is especially critical when there’s no other way to achieve what is needed). Today he’s had the current Band-Aid on since 8 am. And he slept with one on the sore willingly last night the entire night. He’s never been able to keep a Band-Aid on an actual injury or wound before.
I’m not happy he got sick. I never am for either of my kiddos, though it is a part of life. But I am really happy we’ve managed to have such a profound breakthrough on the tolerance of wearing Band-Aids when needed. There is so much diligence involved in keeping him from getting cuts, literally there’s a whole part of my brain that can never relax because it has to focus on that. Perhaps maybe now it can take some time off- from that at least.
If I’m having the most honest moment I can have right now, I’d say today is a day where my brain is struggling to marshal enough external focus to write, internally those neurons are dancing away listening to Karol G’s latest single on repeat. Even though my desire to focus is definitely on strike right now, I cannot forget that I still have much to be thankful for. One truth here must be honored above all others right now: without the help of our son’s case manager from Arizona Children’s Association, we would likely still be on the hunt for an ABA provider.
To respect the privacy of everyone involved, this person remains unnamed here. But my gratitude cannot be so. Anonymous on-line but not in my heart, for what you have done, you have my deepest and most sincere appreciation. Thank you <3
Some Reading/Viewing To Consider (links where applicable in titles):
Many of us have probably already seen at least the headlines about this story, but this was the first one I personally read about it which identified this child as having a disability with an IEP that stipulated the family was expected to be present in school to help manage the behaviors of their child, something which did not happen the day of the shooting. As a child who has struggled with behaviors that many feel should rightfully have excluded him from participation within the community, behaviors which have been greatly improved by years of consistent therapeutic effort, if I could cherry pick some quotes from it that I would want everyone to dig deeply within themselves to ponder it would be these:
-“Students-who often are students with disabilities- are put on a track of essentially exclusion.”
– “Both Knackstedt and Malhar Shah, staff attorney at the Disability Rights Education and Defense Fund, said it was highly unusual that parents would be accompanying a child to class rather than that role falling to staff members provided and trained by the school district.”
-“Few would advocate removing all disciplinary measures, but giving teachers tools other than suspension and expulsion is an important step, they say.”
Those tools can only come with adequate funding. Appropriate support staff for individuals with developmental disability can only come with adequate funding. Recent reporting from ABC 15 mentions that in Arizona, teacher shortages in special education are especially acute, and low pay levels that have not kept pace with the cost of living are, in my opinion, at the heart of all of that. But it’s not just teachers that are needed, it’s adequate support in aid and therapists for special education teachers. As always, I ask each of my readers when thinking about how to engage within these matters in the community to ask themselves how they would want their children cared for if they had any of the circumstances described in this article as theirs to navigate.
The first visit I had to the ER after developing symptoms for POTS, they kept asking me if I was sure I wasn’t just having anxiety given my circumstances (despite the fact that we could all see my heart rate was going down when laying down, nothing else changing about my circumstances). I think it’s important to spread awareness for this condition, especially amongst women who are both more likely to be diagnosed with POTS and more likely to be misdiagnosed with anxiety before getting a proper diagnosis. If the heart rate you have is 30 beats per minute or more higher when you are standing up than it is when you are laying down, I recommend making that part of the discussion you have with a cardiologist for an evaluation.
How to Think Like a Roman Emperor: The Stoic Philosophy of Marcus Aurelius, by Donald Robertson
This week alone I described my current circumstances as life flying at my like a stress-raging kegger and a dumpster fire of stress. I think that feeling can be common when you have a kiddo or a loved one with extensive care needs, especially when life brings you your own medical mazes to navigate at the same time, or your car engine is burning through the rings, et cetera, et cetera, et cetera. This book weaves together some stoic philosophy, history as it applies to how Marcus Aurelius used it to navigate stressors in his life, and some cognitive behavioral therapy practices that mirror stoic practices. I find so much of this to be of value and useful when confronting the difficulties of life.
Ok, I think the title perhaps would be better stated as a VIEW about anxiety, I do not feel I can with any confidence sell anything as the one truth about it. Nonetheless, I found his ideas to be interesting, and I loved the breathing technique he mentioned. I do think some of how we react to stress in the now can certainly be amplified by echoes from the past, and it is a powerful step in helping moments in the now feel more manageable to recognize the where and the when of that.
And, for my Spanish speaking loved ones, this is one of my favorite TED talks I have listened to this past month. I believe what he is talking about is of value to anyone, however, so perhaps maybe English captions could make this doable for anyone else who is curious. This speaker’s talk is based around the idea that as a person thinks, that is how they act, and how they are acting is how their life goes. I loved an example he used to describe how powerful, limiting, and incorrect our own thoughts can be. He speaks of how an elephant is trained when they are very small that the chain that holds them can’t be broken. But as they grow physically bigger and stronger with age, they never try because they believe what was once true in their younger life, and so that chain that could be easily broken as an adult if they try can hold them there still. So this then, is a talk about changing habitual thought patterns when needed or desired. I love also that he recommends really working at developing a new habit of thought by focusing on making those changes over a 90 day period, I think the more time a desired behavior is focused on and used, the more strength it can have as a habit.
Where’s the volume control button for life? Photos by Ariana
Tony was struggling for a while with accidentally holding down the side volume buttons on his kindle for too long, which would mute his device. His brain takes longer to get his muscles to learn how to replicate motions he sees (it is not a matter of understanding, his brain knows what it wants the muscles to do, but the connections between his brain and his muscles misfire), so it took a few weeks for him to become fully independent with the method I was teaching him of locating the sound icon on his tablet screen and using it to pull up the volume bar and manipulate it to increase his sound levels.
Once he mastered that though, he started cranking up the volume on max all the time.
On the one hand, it’s a victory to have my kiddo with the hyper sensitive hearing not only be able to tolerate that, but to crave it. On the other hand, it’s a bit too loud for me sometimes, it can bother other people when we are out in public, and it can make conversations difficult.
So I had to get him to cooperate with turning it down. I tried showing and asking him without giving him anything in return, but that wasn’t so very effective (it totally didn’t work). Since Tony fluently speaks the language and accepts the currency of skittles, the very first time I offered him skittles to lower it, that volume was independently turned down and he’s replicated compliance every time I offer skittles with the request.
We’ve been doing this less than a week now. I praise him and give random skittles for keeping it down.
And it’s been a great week for that to be happening. Life has felt like it’s been on full volume lately, with things blowing gustily through my schedule one after another, and it caused the kind of headaches that loud sounds nurture in all the wrong sorts of ways. Sometimes I just wish I could turn the volume of life down sometimes, or at least put the crisis button on mute for a while.
But I can’t.
So, I have to find a different way to make it feel like the volume is lower and more manageable. I really can’t change, for example, that my 2010 Prius needed a new engine this week, but I can focus on being thankful that when the oil started pouring out of the bottom of the engine in a few places, I was pulling into our garage. I mean, yeah, it took two hours for that tow truck to arrive…but not having to spend two hours on the side of the road with Tony, that’s some seriously reduced volume right there if I think about it.
Maybe instead of dwelling on how much it cost to repair my car I can think about how the service rep hooked me up with a loaner car from their dealership that I only had to pay a $35 deposit to use. They had my car for a week, so definitely that helped make all of this easier and I am profoundly thankful for it. They detailed my car for free too…it was so clean, I didn’t even recognize it. I pretty much don’t ever have time to wash my car, much less budget time to take it anywhere for that, and it’s not really something I feel is a necessity to budget for moneywise either. But I definitely appreciate having a clean car, so it’s something to enjoy while it lasts 😀
This is the makeup I wear when I want to reassure someone I’m not too crazy to loan a car to…
Yeah, I had an increase in allergic reactions and problems after the Xolair attempt at the end of December (all of that is calming down now, I definitely don’t want anybody to worry). But none of it was serious enough to require hospital care or my epi pen and I am beyond grateful for that, because that kept me able to still show up for and do everything else on my schedule.
I had more hives in January than I had the entire past year…those were on my chest.
Sometimes things we’re going through over here are pretty hard emotionally, and I don’t really feel like it serves my son or my family to detail all of it. And it can be hard not to let all of that blow away any chance I have to feel happy about anything. And sometimes I need to do things that aren’t hard, but I just timewise wasn’t planning on, like ABC data for the next week for our son’s new BCBA. Extra things even if they are smaller time commitments can feel stressful right now because of how maxed out I am. But, if I think about how incredibly lucky we are that he once again has ABA services that aren’t coming from me…it’s a greater gift to have that to focus on because it’s the part of this that means and matters the most to me and to our family.
And even if I don’t have time to do anything else for myself, I still spackle on my makeup for little hints of daily joy, and it helps me remember that life can be colorful and not just dark. Sometimes noticing the things that I can be grateful for can’t mute everything that’s going on, but it does make the volume seem a little less intense.
