Ariana's Posts

Just The Waves Of Life

Posted on by Ariana
Tony looking through his lunchbox at school, photo framed close to protect privacy of other students, photos/screenshots by Ariana

Every night since I developed POTS, I listen to some version of waves crashing against the shore. I find that these sounds sooth me the most, and I sleep so much better with them…but only if they crash with a certain amount of force. Not too much, not too little. My inner Goldilocks gets it.

Life in a way is like spending time on a beach. Sometimes the balance of the waves is one we like, other times it’s maybe too much, too little, too dangerous, too tame…and sometimes everything just gets flooded one way or another. I have seen the ebb and flow of such moments this past week.

A kingly and elegant hummingbird with royal purple feathers flowing down his head stopping on a pomegranate branch about 15 inches from me while I was meditating and grounding as the sun was just starting to roll into the sky where I live- and stayed on the branch until I moved. Which I didn’t for bit, because it was such a treat being so close to a hummingbird. Trouble with our garage door, mostly resolved at this point. Tony staying at school for 4 hours and making it to his first full lunch period. Somebody trying to open a credit card in my name using all my personal information…including my SSN.

Yeah. That was a wave that crashed a bit too much for sure.

Ok, so that last part is definitely the kind of wave I don’t want, but that’s life. Sometimes it comes at you in ways you don’t want. But it could have been worse. Because I get notifications from Experian for any change to my credit report through them, I was sent an alert within a few minutes of the person submitting the application…and I know based on when the credit was pulled MST that they live in a time zone that hadn’t hit midnight for them at the time they did it based on when it posted to the credit card company’s system.

There are villains in this story (boo to the person who did this – because it certainly wasn’t me, I can’t see myself needing a card with frequent flyer miles since I don’t think I could even get my kiddo calmly through the airport, their security procedures, and on to a plane in the first place right now- and the original hackers who raided one of the health care providers I have seen that this information likely was scraped from) and there are heroes (like John from AZ who works for the fraud department at that particular credit card company getting the application canceled out and marked fraudulent for me before it was approved).

There are things that are lucky. Hurray that I get notifications from Experian (who alerted me within minutes to the hard pull on my credit that is done when an application is initiated), because even though I have monitoring for 24 months from one of the doctors I used to see who got hacked, their service is through Transunion, and that’s not where the credit report was pulled from…so I wouldn’t have known in time to do anything to prevent a big, ugly mess if I had waited for Transunion to register a new account.

There are things that suck. I’ve spent more than six hours total related to getting that application marked fraudulent and freezing all of my credit reports and putting fraud alerts on through the three credit agencies. And, I’m sadly not done. This person used my SSN, DOB, all my stuff…which is why I believe it was from one of the health care hacks that has exposed my information in the past year and not one of the retail hacks. Nobody I just buy stuff from gets that up close and personal enough with me to know my SSN.

Why do we even need three credit agencies anyways? Because what it looks like to me is that unless someone is getting notifications from all three, or paying for a whole lot of different monitoring services, it’s a little too easy for something to slip through the cracks if only one agency is providing your service as regards to that. And quite frankly, that’s not benefiting anybody but identity thieves and fraudsters. Maybe the individual agencies collecting monitoring fees are benefiting, but good golly credit fraud is costly and I vote for consolidating all of the credit agencies into one!

I didn’t initially freeze my credit when I got the notice from my former cardiologist because I’ve been getting these types of notices for years, I just monitor my stuff, and I like to have the flexibility of being able to do whatever I need to do without unfreezing, unlocking, etc. Now I’m kind of wishing I’d frozen it, but then I wouldn’t have know for sure someone tried to do this with that information. But truth is, I got lucky, because this account was closed before it was ever approved.

I have heard people recommend not to give health care providers your SSN, but the reason they want that is so that there aren’t medical records mix ups between individuals with similar or even idential names. I used to work for a hospital system, and those kinds of medical records mix ups can kill people, so they prefer to have something that is a super unique identifier like the SSN for patients. But it’s definitely unfortunate when data gets hacked from a healthcare entity that has access to all of that. However, if you are concerned after reading my story, you can probably ask your provider to issue you an organization specific computer generated ID number from their system for their medical records- it just won’t transfer well to other health care systems in my opinion.

Today’s makeup…when we did public therapy at Baskin Robbins earlier today, the clerk complimented me on my eyeshadow, which was sweet…makeup is always a happy wave for me 😀

But that’s life. It’s the good and the bad. Our son’s BCBA encouraged me to do something kind for myself this past weekend, like some colorful makeup on a day off from my job at the school. Today was the earliest I could manage that (spring break) with what’s been going on, but I also got to have breakfast with my good friend Gena. So even when the waves are pounding too hard sometimes, there’s always still a gentle stretch of walking in the sand and finding some bit of quieter enjoyment.

And before I get going, one quick video share: I found this soooooo relaxing after I spent 1 hour and 39 minutes on one phone call alone over all this. You can click on the title for a link.

Rainbow Curve and Relaxing Music, YouTube video by Lew’s Sensory Therapy

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March Gratitude & Some Self-Care For The Stressed Viewing/Stuff

Posted on by Ariana
Tony & I early in the school year, photo by his fabulous teacher, Ms. L

Y’all, my schedule is so full I don’t usually even cook for myself these days. I make myself salads. Yogurt bowls. Oatmeal. Smoothies. Maybe some pasta (if it will cook in less than 10 minutes). So as much as I would like to detail all the ways I am grateful for the special education team and the staff at our son’s school, I just don’t have time to do any of it justice. Some day soon, but this week isn’t that week, so what I will leave you with is the most concise thing I can say, which is that I feel like they have seen my son and his needs and every single person has been supportive in a way that wants to wring tears from deep within my heart every time I think about it. I am grateful and touched by the way they have worked with him, with me, and with our family. You guys rock <3

Some Self-Care For Stress Viewing & Stuff

Emotional Freedom Technique (EFT) Tapping, by Ridley-Tree Cancer Center (YouTube Video)

When finding self-care feels like the quest for the Holy Grail, sometimes I want to internally shriek like a banshee when someone says I ought to make more time from myself (because there just isn’t much of any such thing that can be carved from my schedule right now). If that sounds like you, but you would be interested in trying something quick that is evidence based that might help calm the pounding from the waves of stress, maybe consider giving EFT a try. I found this video to be especially nice because the presenter is using a very soothing voice. As an additional recommendation, I add to my “even though” statements an additional piece: for me, it is not enough to stop with loving myself unconditionally, I like to add a positive leaning statement about how I’m going to find a solution, or get through something. This helps orient me to being open to the best even when I’m dealing with the worst and gets me in the best frame of mind to problem solve if need be. (Click on the title for a link if you are interested).

Dental Guard Recommendation: SmartGuard Elite Dental Guard, Front Tooth Design

So, I broke that crown grinding my teeth in my sleep…something that started with the pandemic and hasn’t let up yet. So, if the stress is causing you to do this also, read on. I know I should have a night guard, I’ve even had one made by my dentist, but they are too expensive in this economy for me to keep having done professionally (because I grind through them enough where replacement costs would be over a thousand dollars yearly at a minimum). I have literally hated pretty much every over the counter mouth guard I have ever tried, except for this one I found last week doing public therapy. I can close my mouth with it, because it only covers the front teeth it isn’t too thick in the back (but it definitely does keep all the teeth from contacting), and because it’s smaller, it’s quicker to clean in the mornings- win, win 😀

Ariana's Posts

Life Always Giving Us New Therapy Goals

Posted on by Ariana
Tony from our hab session this morning, Photos by Ariana

Things have remained pretty busy over here, so I am going to keep this post short and sweet. Yep, it was strep. He’s been on antibiotics for more than a week now. And the appointment to be tested with his primary care made it clear there’s yet another thing we need to help him learn how to tolerate: strep swabbing.

He has only ever been tested for strep once, several years ago when he was much younger, and he had to be held down then. I had to hold him down this time too because he got really scared by it, and with his throat hurting I imagine he wasn’t feeling as receptive to anybody touching back there. He tolerated every other part of the exam calmly, including looking at his ears and listening to his lungs. He let them put the blood pressure cuff on and pump it up. Aside from the sadness that gave me to see that we needed to hold him down to get this done, I recognize it won’t be sustainable as he continues to grow.

And so, another habilitative therapy desensitization goal was born. I bought some swabs of an appropriate length from Amazon, and we started working with them today. Because I have done so much work for other types of swabbing (like COVID testing, which he is now fully tolerating without reinforcement), the progression on this for today has gone pretty quickly.

I started with touching his lip, and then when he was tolerating that well for part of the session I moved to asking him to let me quickly touch the tip of his tongue with the swab. Then we progressed to touching the side of the mouth back towards his molars and then to rubbing for a couple seconds in that area. In time we will progress to moving towards touching the areas pertinent for testing with the swabs. This is something that has to be done gently and carefully so that swelling and/or irritation isn’t caused, so we won’t work on it more than once a week.

As many things as we have worked on that he’s now tolerating (recently he’s progressed to calm acceptance of an anesthesia mask on his face while laying down without his kindle for a full minute, with lavender oil in it to help with the expectation for possible odors), there’s still so many things still to be done. We also worked on sunglasses today, with the longest he will keep them on being 2 minutes right now. I know sunglasses aren’t strictly necessary, but if he should ever need glasses for his vision, this will be an important one too.

And, though it’s random, I found out more than just what else we might need to work on in therapy this past week. Tony likes the song “California Love.” Sometimes if a song comes on the radio and I see him moving his head to the music or clapping, I ask him…and this was the case here too, and he was pretty emphatic and enthusiastic about it. So on my Spotify liked list it went. These moments mean a lot to me because they give me glimpses into his own unique personality. That’s not a song I generally listen to, he definitely has his own likes and preferences outside of what he gets exposed to a lot from my listening tastes.

And now I am headed off to get ready to do more therapy. I wish you all a wonderful week ahead! <3 Ari

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“He Has Benefited From Having You Here”

Posted on by Ariana
Morning traffic on the way into school just after an in-home OT session, photos by Ariana

Yesterday afternoon I had the pleasure of meeting briefly with the current principal for Tony’s school to discuss how things were going for him and whether or not I’d be returning to assist him at the school next year. She remarked about how well he was doing, we talked about the growth he’s had in the school environment, and she said something that I think sometimes we all need to hear:

“He has benefited from having you here.”

For each and every person who works with our son in whatever capacity, he benefits from having you here too.

Even if I’m not talking about it right now as I try to decide how I want to handle discussing any of his other therapy services outside of my hab work. I have honestly been uncomfortable asking anyone to participate in posts about their therapy work after what happened with a former provider more than a year ago, which is why that hasn’t been happening lately. While I tried to handle any discussion about that situation with a delicate hand, there remains implicit criticism from our family in what little I did say, as we remain unable to support their handling of our son’s care at the time of termination or the manner of the termination of care from their organization, while recognizing and honoring the good they do for other families within the community. My desire has always been to make sure this is a safe space for everyone who works with him because I know at the end of the day that what I say can potentially impact a person professionally.

But that does mean that I have not been shining the same light of gratitude on those who help us here that I used to because I have definitely been talking less about the details of what they do as I remain unsure how I want to handle that going forward. We have been and always will be grateful for those who work with our son. I don’t want any of them to feel like they are unappreciated ever. But I do want people to feel safe continuing to work with our family, hence the public silence for the time being.

Because you are deeply appreciated. I am grateful for anyone who helps him in whatever capacity.

And so from me to you I give the same words:

Tony has benefited from having you here. And that is something that benefits everyone who works with him.

Thank you <3

And now I need to get going. Our little man has an unexplained fever without respiratory symptoms (COVID test negative, he’s doing so well with those now!), so we’re off to his doctor to get tested for strep.

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February Gratitude & Some Reading

Posted on by Ariana
Hannah and Tony from an outing to Baskin and Robbins this past week. Photos by Ariana

To My Children

Words can be spoken or written as no more than hollowed vessels that propriety and circumstances may dictate be served up and spiced at the appropriate intervals. These customs surficially demonstrate to others that we love, we care, we rejoice, we are grateful. But to render them with every depth of feeling that is in them…perhaps we can never give that to another who shares not our hearts, our souls. Whatever I may say about what my reflections on my experiences or difficulties are, never would I want anyone to doubt that my love for my children is powerful beyond the limitations of language, and an unconditional motivation for many things that I do. Only the parts where I goofed would I ever want to have done differently. I love you both with everything in me that is deeper than words convey, and I am grateful every day for you both.

Busy As A Mom/Hab Therapist/Instructional Aide

Y’all, I’ve had a busy, busy few days. And, I just had part of a dental crown crack off today, so…I’m going to be even busier. Posts are going to be short for a while so that I can take care of all of the everything that needs to be done (the pictures below are from this morning’s hab session). Much love, Ari

Some Reading To Consider

The Trouble With Witches, by Kristen Painter

When things have been very stressful, I need reading that isn’t baring any scary plot teeth. And that is definitely this book. For my more religious loved ones and friends, it’s a clean read. None of the principal characters die. The ending is happy (even if the timelines for being so are maybe less plausible). My only real nitty picky criticism other than how quickly the characters fall in love is the use of “luminos” by one of the characters to turn lights on with her magic. It hedges too close to the Harry Potter lumos for my comfort levels. (As I said, nit picky!)

Otherwise, I feel like the story is creative, the characters mostly communicate in a healthy manner (love that!), and while there are some moments of tension, all of those are resolved pretty quickly and the book always seems to give you the sense that they will be. There are a couple heavier themes in the background (the heroine’s mom is a con artist that tries to use her magic to set her daughter up to take the fall for a major theft, for example), but neither those nor the emotional trauma that could have resulted from them are really dwelt on in much detail, the characters involved seem to default to the positive and solution finding so it didn’t weigh the emotional feel of the book down much for me personally. So for all of my spread thin friends looking for a quick read that won’t fan the stress flames, this is a cute book that could be just the right amount of distraction you need.

Ariana's Posts

The Schedule’s Packed, But It Creates More Than Stress

Posted on by Ariana
Because he’s not there the full day yet, but he is getting more used to school being added to his schedule of expectations, we are starting to take home items for him to complete after his other therapies. Colored independently, I cut out, he helped with the glue stick. Photos by Ariana.

Most days are packed. Up at 4:45, giving the kids their meds, getting ready to walk around 5:30 with Tony, neti pot, yoga, rower, shower, makeup, drive into school, participate in everything that might be required there, drive home, be present for anything his ABA RBT or BCBA needs, do some chores when they don’t need me, therapy (hab hours that I am responsible for or other therapy types), maybe help Tony with something that didn’t get done at school, pick Hannah up from somewhere…and somewhere at the end of that and everything else that needs to be done, it’s nearly 7pm and time to start getting Tony ready for bed and watch some anime with Hannah afterwards.

Sometimes road conditions extend the drive time…we had fog one day this past week! Yesterday our day went straight through to nearly 7:30… that’s us at school in PE (where he did a great job tolerating a high speaker volume and noise level). After ABA we did a haircut, and the last picture is right after parking for public therapy some time after 5:30.

Our son’s RBT commented this past week he hasn’t seen me work on a puzzle or play ukulele in several months. Kinda hard to fit anything like that in anywhere on the schedule the way things are right now.

But, truth is, I wouldn’t choose to do anything different. Being in the school environment, I can see how having my level of knowledge of Tony and how he responds to things is helping contribute to successful outcomes. And the growth I have seen in him just from getting to be around other kids and see how they do things has been enormous, it’s a gift that pays more than it takes. More joy, more hope for the types of opportunities he may be able to have in the community.

What I do in the habilitation therapy hours I am able to work also cannot be cut too much, because he’s gaining skills there that will benefit him everywhere else and there’s no place else in his schedule they can be practiced. Sweeping stuff into a pile using a broom? He can do that now. Making his own smoothie? That too (including pouring it into a cup)! Plugging in his own kindle? Yes! Getting his own zippers threaded and up without assistance? Much of the time.

Tony’s developmental pediatrician asked this past week (and I am going to paraphrase here) what I was doing to make sure I was taking care of myself and who is coming in to help me. Well, with a schedule like this? Options are limited, and they look like makeup, a couple minutes of meditation, watching telenovelas while I’m eating, reading a book while pedaling on my stationary bike, or listening to a book while I wash dishes…and the truth remains that options are limited for anybody coming in to help here even for all of the growth Tony has made. My friends all have jobs and families of their own. Most of our family doesn’t live near, and the ones that do also have their hands full. So for me to get more self-care time, I would have to cut something necessary for one of my children out of my schedule. And that’s not happening.

Sometimes things happen to prevent me from doing certain self-care items, and I confess it does make me feel edgy. Tony went to give me a hug during therapy last weekend and his finger nail clipped the side of my eye because he was looking off to the side and didn’t manage to get his arms positioned exactly on either side of my head to avoid contact. I tried to swerve, but I wasn’t quite fast enough and his finger still clipped me on the side, so I felt it was best to skip the makeup for a few days to avoid getting an infection.

Those things can’t be changed. Our son’s needs and challenges can’t be changed any other way than what is being done. I think it’s pretty important for me to clarify that while I stated in my post last week that I don’t have time for therapy for my current circumstances, going through therapy for other things has given me a lot of well-ingrained habits that allow me to self-rescue when I’m emotionally struggling. None of the techniques therapy can provide will make up for limited time for self-care, and none of them will erase ongoing high stress occurrences. Which is my way of saying I don’t think it would add anything beneficial to my tool bag that I don’t already have- but that if someone doesn’t have well-developed self-rescue skills and they are walking a similar journey, it may be beneficial to find some way to make time to at least read some pertinent self-help books and find ways to apply what can be done to their own circumstances.

Some day, our little man will be well-acclimated to the staff, the sensory input, the expectations at his new school and he won’t need me there the same way. When that happens, I may take a few months just to nap and soak in some self-care IOU’s…but until then, I can definitely keep running on even the fumes of happiness it has given me to see the growth Tony has experienced there. For me, even though I never would have chosen for my children the struggles that they have had, it has been worth it even when it’s been hard to do the things that I have done, and it is important to me that each of you recognize that side of my experiences exists also.

Ariana's Posts

Maybe This Ain’t Your Mama’s Stress

Posted on by Ariana
Maybe this looks like any moment you might see for anybody this time of year, but this is the first walk Tony has ever kept a hat on his head for most of it, and he’s nearly 12. A kiddo with extreme sensory differences and tactile defensiveness may have struggles most people can’t imagine. Photos by Ariana.

Originally, I had planned this particular post to come after “Maybe She’s Going Through It.” Then everyone was sick, and I just wasn’t feeling the writing vibe. And then I got carried away in watching my son doing so well with some of his goals the first week we were back at school, and I just wasn’t sure I wanted to take my next post into more negative territory. As I thought about it though, I feel like it is a fine line to walk between toxic positivity and optimism, and I feel strongly that some truths about what the experience can feel like for individuals in a family with an individual who has severe developmental delays, a history of extreme behaviors, or high levels of needed support should be talked about more. I have a lot of hopes, true…but I also have absorbed a lot of hurts.

Recently, in response to a statement I made about how intensely stressful my life has been the past year, a nurse for one of my medical providers said basically well, that’s just life and you have to find a way to deal with it. I want to tread as delicately as I can with this. To be clear before I go any further, I would never want to see this person shamed for having said that, so what I say is more in the spirit of hoping to see my perspective understood. I chat on-line with another blogger whose view is that the toughest thing a person has been through is the toughest thing they’ve been through. And I think that is a lovely and gracious way to interact and think about the struggles of others, because some times the comparison filters between two people just don’t help.

That being said, I’m going to compare within my own life. I used to have what many people considered to be a “normal” high-stress life, more or less, except for the part about how my brother died. Pretty common stress and trauma themes that can be had in this life.

I had no idea, literally no idea how good I had it. None. Zero.

Even when I feel like the need to “go and fix [my] makeup” because other people are telling me that as I cope with my own broken heart moments “don’t matter how you feel, it only matters how you look,” the truth is sometimes like Sia “I may cry ruinin’ my makeup…and I don’t care if I don’t look pretty, big girls cry when their hearts are breaking.”

I now look back on those days with longing for how easy they were in comparison. There’s so much I’ve never written about on this blog because it’s just not in the best interest of one or more of our family members to do so. And even when some people say that they couldn’t be me and do what I do, I wonder if they realize that I feel like I’m living out a whole bunch of moments like it were a songbook of stress, singing with Chloe about how “no matter how many times I break, I put myself back together every damn time…yeah, I make it look easy, but there’s so much I’m needing” as I’m rushing towards a bag of Hershey’s truffles trying not to “loose control,” except unlike Teddy Swims, my codependency for unhealthy stress management has become dark chocolate- though we apparently do share the common ground of having tried everything but therapy (at least for me not in the past 12 years). Literally, for every person who thinks it would help manage all of what’s been going on this past year better, I’ve got this to say:

I. Don’t. Have. Time. My schedule is far too packed, I can’t even get 8 hours of sleep a night.

I’m too busy getting my hands dirty taking care of things that need to be done around the house, or doing therapy as one of Tony’s providers, or working my second job as has one-to-one aid.

And, I’ve been through therapy before for other things. Trust me on this one, even when you know the techniques that can come from therapy, there can be times when it’s just not enough to fix everything that has been going on. Therapy is not a magic wand that will dematerialize the happenings in one’s life, and for some things, I think it’s completely normal for a person to find it stressful and struggle to manage that at times. Those moments can leave me hoping and praying I don’t start feeling like Jelly Roll when he’s singing “I’m so damaged beyond repair, life has shattered my hopes and my dreams.” But like him, people tell me that at my level of stress, “I’ve spent so long living in Hell, they say my lifestyle is bad for my health.”

But I can’t do anything more than I am doing to help or change things. I do what I do because it is the best path towards the light at the end of the tunnel for me and our family.

So to anyone who has maybe felt uncomfortable listening to me mention something stressful, forgive me my leaks. But sometimes, the truth is, there’s just no such thing as emotional Depend (TM Kimberly-Clark) that can soak up my reactions to things that are happening to make sure everyone around me is always comfortable with what they are seeing or hearing. So may I gently recommend to avoid tell someone walking a similar path to mine to “run and hide [their] crazy and start actin’ like a lady.” (a la Miranda Lambert)

Because what they are going through might not be anything like your mama’s stress. Or your stress.

Maybe just give them a hug if you don’t have time to do anything else. Maybe tell them you see them, you see their struggles, and yeah they are tough and anybody would be having a hard time in their shoes. And if you don’t see them and you have time, ask them if there’s anything they’d feel comfortable sharing so that you can see them.

______________________________________________________________________________________________________________

*P.S. If you’d like a deeper dive into my thoughts and feelings as I wrote this post, and you have the time, may I recommend listening to the songs I listed or looking up their lyrics. The full list is as follows:

“Make it Look Easy,” by Chloe

“Lose Control,” by Teddy Swims from his Album I’ve Tried Everything But Therapy (Part 1)

“Save Me,” by Jelly Roll with Lainey Wilson

“Mama’s Broken Heart,” by Miranda Lambert

“Big Girls Cry,” by Sia

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The Gift Of The Christmas Germs

Posted on by Ariana
photos by Ariana

There’s no way a gift bag, fancy wrapping, ribbons, or a bow would hide that this year, I felt stretched thin enough that I simply slapped traditional veneer on the right spots heading up to the holiday. So what we were doing kinda looked outwardly like appropriate festivities, but the feeling didn’t quite reach into my own emotional epicenter. That part of me just wanted two weeks of sleeping in delivered under the tree (whether it was wrapped or not) and didn’t really care how it looked on the outside to anyone else.

Andy was the first person to get sick last week. I doubt it came from his job, because he’s having to mask up there. More probable those germs became unwelcome holiday stowaways on one of the many errands he had run that week. Tony was the second person to become ill, and by Sunday, he had a fever of 104.6. At that point I knew there wasn’t any sort of sparkly spackle I’d feel like pulling out of my system to make something that looked like a holiday dinner…so I asked everyone how they felt about ordering pizza on Christmas eve.

Tony during one of his daytime naps yesterday. Ne never naps unless he’s feeling very sick. He likes to curl up into the wall sometimes when he’s sleeping.

I was glad Andy and Hannah were cool with that when I started feeling under the weather on Monday. Tony hates pizza because of the mixed textures and wasn’t wanting to eat much anyways, so we were just focusing mostly on hydration for him. My symptoms were milder than either of theirs, but still I skipped the makeup for 2 days and my system still feels less than Joy to the World even if the skin is glowy as it battles off the rest of the crud. Wasn’t flu, wasn’t COVID, we’ll just call it the gift of the Christmas germs, viral edition…since a whole bunch of people we know are also sick right now too.

Tony’s still sleeping a few hours during the middle of the day which is nowhere near his normal. And even though the version of this I experienced is much more mild, I’d like to be napping right along with him, so…I am going to leave this post with wishing all of you a wonderful New Year and the notice that I am giving myself the post-Christmas gift of at least two weeks off of writing posts here.

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Maybe She’s Going Through It…

Posted on by Ariana
photos by Ariana

The stairway up to the balcony level at Symphony Hall is pretty wide. If I had to estimate, I would say it is four feet at least between the wall and the first set of rails, and then another four feet or so of stair width on the other side of the middle rail. Hannah was walking very quickly up one of those sides (we were heading up to the balcony for the start of the Nutcracker, everyone else using the stairs at the time we were on them was going up), and I was on the other side of the rail, getting ready to walk past a couple of people to the side of me holding on to the middle rail.

One of the women looked me straight in the eye as I was starting to pass them (I had looked over at her as I walked past to make sure I was easily clearing without contact) and she said “Well, if you’re going to be so rude and you can’t wait you might as well just pass.”

From my perspective and memory, I was a bit confused as to why she felt I had been rude to her because there was a good 12 inches at least of space between her and me. I said to her that I wasn’t trying to give any offense or trying to be rude, I was just walking past as I was trying to keep up with my daughter on the other side.

I asked Andy when we got home if there was some etiquette rule for that type of situation that I wasn’t aware of about stairs and he didn’t think so. I Googled, and didn’t come up with a different answer from his. The feedback I was given from others I discussed this with was that she went off on me unnecessarily, and one person I spoke to felt like my take was too generous.

My take was to send hopes and prayers for some positive energy from the universe to go her way. And quite frankly, I’m worried about her. And this is not virtue signaling for those of you who have been rightly taking your social media induced cynicism gummies. I feel some genuine heartfelt concern is warranted if there wasn’t an actual breach of etiquette on my part. I know when I’ve reacted in a way others might not have expected, I was going through some pretty tough stuff (you should read that as I was in some really, really hard circumstances that I barely made it through without falling apart) and struggling with the stress and weight of it all. My thought is maybe she’s going through it and whatever it is, it’s pretty damn rough for her right now.

If you’ve read every single post, you would know we’ve been through a lot on this journey. And everything you read is nowhere near all of it. Not even close. If there is one thing from the bottom of my heart that I have learned and learned well because of this journey is that sometimes when a person is struggling in the moment, there’s so much more going on behind the scenes that led to whatever it was that happened.

Part of me wishes more people could see all of that and have compassion for me when I struggle with something or do come across rude, but then part of me gets it. Most people aren’t seeing most if any of whatever is going on. They’re perhaps not experiencing anything like it themselves. They don’t know that maybe I’ve really been going through it.

This is the time of year where we love to buy people gifts, but I think the ones that mean the most may be harder to give, though they are certainly cheaper. The best gift I would want anybody to give me sometimes is a little grace and compassion when I’ve been a little rough around the edges. Because sometimes y’all, I’ve just been going through it. And yeah, maybe I goofed and did something rude at some points (usually without meaning to, it was just the stress showing through). But maybe after walking a few years in my shoes, other people might also find it would be hard to be completely polished and perfectly professional or polite all the time. Because when enough stuff hits the fan for me or anybody, I think it really can be hard to show up as one’s best self in every situation. I know I definitely sometimes fall short of everything I want to be on this journey. And that has helped me to see something different sometimes in other people’s reactions to things.

I am wishing all of you positive energy and happy days ahead this week. Much love, Ari

Ariana's Posts

Scheduling Like Tony Schedules And Then Some…

Posted on by Ariana
Tony, during a speech therapy session with Jenny 3pm yesterday doing an activity geared at improving joint attention after school and a few hours of hab, photos by Ariana unless otherwise indicated. Right now we fill in during her cancelled sessions so he can still see her and work with her because she doesn’t have scheduled openings when he’s available.

To help our son with his combination of sensory differences, functional deficits, and disability-related needs acclimate to an environment such as a public school is more complicated than just showing up and gradually increasing his time when he shows he’s ready for that. There are so many moving pieces to think about.

Screenshot of photo sent to me by Tony’s school OT, Ms. C, showing me the tasks she’d be starting him with yesterday.

How complicated is his schedule already? Very. His school days start at 5 am, when he wakes up and does his first community safety walk (which we determined to be necessary to help him succeed with the increased expectations for sitting in the school environment) and often therapy tasks depending on the day will go until 6:30 pm after he leaves school. Change too much at once in his schedule, and he’ll freak out and reject the school as the cause of it all, because he really struggles with too much change at once. Add too much more and he’ll struggle, feeling too overwhelmed to focus on all of it combined.

Are there steps that need to be added to help him grow into the school environment outside of it? Many.

He’s slowing wanting to try more things in PE, but mostly he still prefers to walk laps or play with the rings or stepping stones in PE.

Right now on days ABA isn’t able to come in to do that therapy work, I am extending his time in public spaces during habilitative therapy so that he can get used to being out of the house for longer periods of time by starting first in environments he’s already demonstrated a tolerance for doing things that involve practicing his appropriate waiting, sitting, and food ordering skills and expanding to just tolerating all of the differing sensory elements of public spaces for larger portions of his day. We continue to work on helping him adjust to the behavioral expectations of the school environment in all therapy types, and I spent more time than I envisioned last night and this morning looking at fidget toy options with switches similar to light switches on them to help give him something to control that’s not a classroom light when he’s feeling the need.

And there’s more, so much more. Learning to use glue sticks, scissors, communicating and coordinating with all of his providers as regards to what his current behavioral needs and interventions are so everybody can be consistent…honestly, it’s a lot. Plenty of normally developing people can’t schedule or wouldn’t want to schedule like Tony has to be scheduled because of the complexity of his needs.

Sometimes it’s a lot for him, and it’s a lot for me. I’m right there walking with him at 5:30 am, trying to sneak in little bits of things for me like responding to messages, inhaling a few minutes of meditation and yoga before I jump into the shower…is squeezing in 4 minutes on my rower really enough to help my cardiovascular health? Probably not, but hey, the 20 minutes of kettle bell I did while Justine was in doing PT this past week count for something beneficial there…right? Right.

Because how Tony has to schedule, as his one-to-one aid and primary habilitative therapist (and the person who shows up to most of the therapy sessions as the parental support) I have to schedule, and sneak anything that I might need to be doing for me in and around it. So, that’s as much as I’m writing this week. Because I finally finished episode 102 of La Usurpadora somewhere in all of that, I need to go find something else to watch while I wash dishes, and then it’s off to do things for our other beautiful child. Because that may not be on Tony’s schedule necessarily, but it’s surely still an essential part of mine.

Wishing all of you wonderful week! (pictures are from other parts of our day yesterday).