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“Slow and Steady…”

Posted on by Ariana
Tony sitting at his desk in a special education self-contained classroom at his school, all photos by Ariana

As you read this, I want you to envision if this were your reality, how the world would feel, how you would act. Imagine even something so common as foam soap could make you gag and vomit if it touched your skin, and that most everything that touched your skin caused pain no matter how gently it landed or how soft it was. Imagine that even common sounds were so loud to you that it caused disorientation with intense pain or headaches. Imagine that everything you tried to do, everything you were asked to do was so hard you couldn’t do it without lots of practice for months or even years, that everything was so hard it was like the subject you hated most, the one you were failing, the one that made you feel really bad about yourself and your ability to do things, the one that the other kids made fun of your efforts at…and now, that’s nearly every waking moment of your day because everything is that hard for you. Imagine that people constantly talk about what you need to be better at around you as part of your therapy programs, so you can never forget that you aren’t doing as well as everybody around you. Imagine what it feels like to have people seeing far more of your struggles to do things than your successes.

How would you act? How would you feel?

Would you be calm? Would you be cooperative? Would you be happy?

Would you be scared of everything around you?

Would it become easier to refuse to try and do things than to keep looking like the person who couldn’t do anything as well as the people around you?

This is what each of you needs to understand about my son. This is what the world has felt like and to some degree still feels like to him.

And changes others might calmly tolerate, he’s only now getting to the point where he can roll with them. Today for example, we went to a park we haven’t been to in a couple of months because of the heat…and discovered they removed all of the old equipment and replaced it with something entirely different. His jaw was dropped a lot, but he did some playing on it and stayed calm. Even two years ago, this would have caused a melt down because it was different and he wasn’t warned and it wasn’t what he expected.

With a great deal of therapy, he can calmly wash his hands with the foam soap in the nurse’s bathroom at his school and still have a smile on his face while he’s doing it. Other things are still much, much harder for him. But he’s capable of them with the right supports.

Which is why his developmental pediatrician and his combined therapy team collaborated with the school in a discussion of our son’s needs. What was recommended and what was agreed to was a gradual integration into the school environment, with 20-30 minutes a day for the first couple of weeks and then slowly increasing both the time and the functional expectations for the environment. Because for Tony, for the fear to feel manageable enough for him to try, he needs exposure to start out slow. He needs expectations to start out slow. Once he’s less frightened, he’s more willing to show you his best effort, but he’s still going to refuse some things sometimes because it still feels easier for him to be the boy who says “no” than the boy who always struggles and can’t do things as well as other kiddos his age.

Because he does know, and he is aware.

Sitting outside his gen ed homeroom during hab therapy after having practiced walking there.

After his first two weeks, he’s tolerating 40 minutes on campus. He is happiest in the self-contained class he’s assigned to because it’s attached to a sensory room, and he loves that because it has the same type of crash pad we have at home. He’s walking calmly to class, self-harming still remains a thing of the past, and he’s increasing his cooperation with instructions at school. We have things we are needing to practice (like walking to his gen ed homeroom) in hab therapy after school to help support what he needs to be doing in school. Some days he sits most of the time we are there, others he struggles to do that. Some days he can trace a few letters and label some characters and do some sight word memory games, others he just wants to look through a book. He’s working on it, we’re working on it.

As his mother, I am super thankful that his local public school team was willing to give this a shot and has been doing so much to support our son and our family in these efforts. But it’s going to be slow, the journey to reaching a full school day worth of attendance. And it needs to be slow, or he’ll reject this environment and these activities with everything that is in him.

And maybe if the world felt that way to you also, you’d need slow and steady too.

Us getting ready to go down for his breakfast smoothie on a school day. Tony is really happy I have been asked to be his one-to-one aid at school as part of this transition.
And I’m thankful the makeup still gets to be “extra” on the weekends even when we are doing hab…
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A Response To Raising Special Kids’ Position on Waiver Proposal 1115: An Open Letter to RSK And The Arizona AHCCCS Administration

Posted on by Ariana
Tony and I doing habilitative therapy to help get him used to the environment and practice functional skills at his school placement, photos by Ariana

Yesterday afternoon, I read the public response from Raising Special Kids about AHCCCS 1115, the proposed CMS waiver that seeks to extend some provisions allowing parents to provide attendant care to their children, while discontinuing others, namely allowing parents to become the paid habilitative therapy providers. I feel it is important for me to share my thoughts, but I also do not have time to finesse my writing to the degree I might in other circumstances, as I have been and will continue to be working on tasks related to my hiring as the one-to-one aid for my son in his school district as he transitions back into that environment.

For our son, it is a necessary accommodation to provide the least restrictive environment that he have a person he already cooperates with safety instructions from working with him in the school environment until he generalizes that cooperation to staff there. We asked for and wanted his RBT to go in with him, and the school district communicated that their policy prohibits outside therapists from working with students inside the classroom.

So here I am spending time and planning on giving up more profitable financial opportunities I could have had to provide the support necessary for my son to flourish as his one-to-one for the first year until he can generalize cooperation of safety instructions to his teacher and permanent one-to-one.

So I don’t have a lot of time right now to sound polished, collected, artistic, or anything other than a mom who sometimes feels bone tired, and I will ask each of you bear patiently with that.

On the surface, the scenario I am describing might seem to support the argument that insisting hab providers be someone other than the parents promotes generalization. But the reality is he’s worked with dozens of therapists in other disciplines (ABA, NMT, PT, OT, ST, and even HAB) who were not me over the years, and it has only been a more recent development within the past year that he will generalize critical safety instructions to anyone other than me. So, I do not believe his struggles with generalization are related to lack of exposure to other people, but rather the specific symptoms of his disabilities in general.

When our son was first approved for habilitative therapy, we could only find someone to do 10 of the 40 hours he was assessed for. So I did the other 30 unpaid.

My son is potty trained because of me and that unpaid work (that took a year of work, and still required reinforcers for years to ensure cooperation up until about 8 months ago.) He no longer smears poop on the walls because of me and that unpaid work. And so, so much more that I don’t have time to write here, but feel free to stick around and read some posts from the past 5 years or so if you want a comprehensive list.

After he was out of his diapers, his physical therapist at the time looked at me and she said “we never thought we’d see the day.” All of his PT/OT/ST services were at the same location at that point, so there was a coordinated “we” behind that statement. Everyone who will ever work with our son in any environment has and will continue to benefit from work I did for free because we couldn’t find providers.

I have a kiddo with a history of hours a day of self-harming. I have a kiddo who would try to use his entire body weight to push through someone like a football player for upwards of an hour to get what he wants. A kiddo who couldn’t calmly or safely take “no” for an answer for years. A kiddo who to this day has risk assessment comparable to that of a kiddo under 18 months of age. A kiddo with challenges so severe people would say things to me like this quote as I remember it from his current developmental pediatrician (who is truly fabulous!) after the first 2 hours she spent assessing him: “When I first read your paperwork, I thought you were exaggerating- but you weren’t!” A kiddo who wouldn’t keep his clothes on when therapists were present (he now can for an entire day of therapists in home because of paid work I did in hab), who would frequently grab his genitals and start stroking regardless of who was in the room. A kiddo who at one point required 2 adults to his one to provide almost all therapy services.

That second person was me. And I wasn’t paid for that either.

We wanted hab providers other than me to fill all of his hours, but we haven’t had anybody to do most of his hours other than me for 6 of his 8 years he has been assessed as meeting medical necessity for hab.

Of course every success Tony has would be absolutely impossible without all of the therapists who have worked with him (and I am grateful to each and every one of them), but it is also true it would have been impossible without the work I did for *free* during his early years, without the work that I have been paid for the past three-but will no longer be able to afford to do for free if we can’t find a provider.

Work that will then go undone.

Practicing sitting appropriately and asking permission to get up and walk somewhere else at the school…

I understand the concern expressed by Raising Special Kids that if parents are allowed to remain providers, it may promote atrophy in the work force of habilitative providers. But for families of individuals like my son, that atrophy might not be going anywhere because the challenges can be beyond what a person paid at the level of habilitative therapy wants to deal with. And, until the rules governing habilitative workers being able to make up hours that are canceled are changed, that may continue even for other individuals. Currently, if a family cancels the therapy because of an illness or an emergency, the hab therapist cannot make up those hours and will not be able to have an opportunity to earn those wages, so if they need that money to support themselves, this job won’t provide them with the stability of income they need.

We’ve had people turn down being our son’s habilitative therapist once they learned the details of his needs and challenges. And even though he hasn’t done any self-harming in any setting in more than 12 weeks now, it still takes him so long to learn certain skills we may continue to struggle to find individuals with the patience to fill all of his hours.

So many skills our son currently has he wouldn’t if I hadn’t been working with him. He may have needed to be in a facility at a young age if he were in a family where one parent couldn’t afford to stay home and provide that support for free.

So my belief based on my personal experiences is that in order to provide the best outcomes to individuals with disabilities, especially those who have severe behavioral challenges, there needs to be at a minimum a provision allowing for the parent to become the paid provider if no other provider can be found. I feel like for individuals with challenges like my son, there is an increased risk of need for placement in a facility outside of the home without a paid option for the parent to step in when no other provider can be found.

I think having provisions in place requiring documentation that a hab provider cannot be found is appropriate to substantiate the need, but it is my hope that the AHCCCS Administration and other stake holders in this process will hear the needs of families such as mine as they are fine-tuning the draft of proposals submitted to CMS and at a minimum include a provision allowing for parents to be the habilitative provider if no other provider is willing to take the case.

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Habilitation Needs To Be In Waiver To Meet Member Needs: An Open Letter To Arizona AHCCCS Administration

Posted on by Ariana
Tony and I during a recent hab session, where we worked on safety skills, being aware of the personal space of others, not touching things that don’t belong to him, and so much more. All photos by Ariana

My name is Ariana T and my son, Anthony (Tony) has multiple qualifying DDD diagnoses. He has complex behavioral and therapeutic needs, but has demonstrated progress through his therapies that have allowed him to gain skills he otherwise would not have had, thus reducing the cost of providing future services to him. 

For the past three years, I have been getting paid as his primary hab therapist. Before that, I spent years doing it for free because he needed those skills, which is well above the level of care that is legally expected of a parent based on my level of understanding. I was doing that because we couldn’t find therapists in our area who were both able and willing to act as his habilitative therapists. We have had therapists who interviewed with our family choose to reject his case and rather take the case of a kiddo who was considered to be higher functioning or with fewer behavioral needs once they learned about his specific needs.

In public we work on things like practicing ordering menu items from others, saying hi to others, respecting their space when waiting in line…

Of the 8 years my son has been approved for hab, I have been providing those services for more than 10 hours a week (20-30) for 6 of those years. That’s a long stretch of time where nobody else could be found. For me, as a parent, there is nothing I want more than for somebody else to be able to come and help him with these things because he does need that practice. But what he needs most is the skills, and if nobody else can be found who can do it, paying the parents to fill that role is better than the disabled individual going without. Which is what will happen for my son if this program expires.

I attended today’s forum, and though I raised my hand early in, did not unfortunately have the opportunity to speak. What I heard in this forum was that AHCCCS did not include habilitation as an area where parents can be the direct care worker because they are concerned about the ability of disabled individuals to gain opportunities to practice working with others.

How does it help a disabled individual do that if there is nobody else willing or available to do so?  

My son has gained skills that he would not otherwise have because of the work I have done with him, and everyone who works with him in the future will benefit from this because I have built opportunities for him to interact with others outside of the home into his hab goals and his hab work. We do so much work around others as part of his hab goals because he needs extensive practice with and support to acquire those abilities.

Tony and I doing hab at a game attended by others in the community to practice appropriate and necessary skills for being in small crowds.

If hab services aren’t included in this waiver for parents as direct care workers, I won’t be able to continue to give him that support for free. Because in the current economy, we will now need me to work outside the home. So what that means for my son is that if the past is any indicator, he is unlikely to have anybody else working with him. And he will not gain those skills without necessary support. And that will increase the cost and difficulty level for anybody working with him in the future.

To me, it is more important that he have the skills and his therapeutic needs met regardless of who is meeting those needs.

As a mother, I want to add my voice to other parents in requesting that the AHCCCS administration include habilitative therapy as a service that parents can be the direct care providers for in their CMS waiver submission. 

Thank you for your time.

Respectfully, Ariana T

P.S. With the current waiver submission recommendation as I understood it today, starting November 11th parents will no longer be allowed to provide habilitative therapy for their children, which could leave many disabled individuals in the state of Arizona without habilitation services at that time. If you would like to submit feedback yourself to the AHCCCS Administration, you can do so at waiverpublicinput@azahcccs.gov

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July Gratitude & Some Reading

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Some Brief Notes of Gratitude

Tony & me, waiting for music therapy to start, June 19th, 2023.

To Sadie, Tony’s Former Lead NMT Therapist

We are so very grateful for your positive attitude during your time working with our son. We appreciate your patience, your flexibility, your professionalism, and everything you contributed to his growth. Even though I personally didn’t get to witness your sessions because your team no longer needs me back there (whoo-hoo!), it is clear to me how much our son has enjoyed working with you and I know he will miss you. From everyone in our family, we wish you every success and happiness in your new home state.

To The Special Education Director In Our Son’s School District:

Thank you for hearing our son’s needs and working with our team to find solutions that would meet his needs. <3

A Brief Note:

The next couple months are going to be pretty busy for me. Our son, as we have discussed, is transitioning back into the school environment, and this next month is going to have many extra tasks necessary to prepare for this. To accommodate that and retain my bubble for stress reduction, I am going to be taking the next month off of posting.

Some Reading To Consider

Two Wrongs Make a Right, by Chloe Liese

First, I just want to be clear this is not a comprehensive review. I’ve ended up needing to take care of some unexpected tasks today, thus my writing time is very short. And, my reason for recommending this book is equally short: I felt the author did a great job representing the intimacy needs of someone who has sensory differences, and for our family, accurate representation matters. I *loved* that this was given an honest portrayal. That being said, it’s also important to note that this is just one possible version of how sensory differences can impact intimacy as individual differences and needs will vary. The heroine of this book is an Autistic artist who falls in love with a young man who struggles with anxiety. I felt like the author’s writing style is engaging, her wit is enjoyable. The conflict that caused that heartbreaking moment of “will they or won’t they resolve this” separation upset me a bit because I personally couldn’t relate to the reasoning behind it, but I can see that as being purely a matter of perspective, because someone else may find it relatable so my opinion on that should not deter you personally. However, for my religious loved ones who have treasured beliefs that involve avoiding descriptions of sexual acts, this book is not going to meet your cleanliness standards, so heads up.

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Cuando El Estrés Me Molesta Mucho…

Posted on by Ariana
Me, today. All photos by Ariana.

I spoke very minimal Spanish when our little man was first placed with and adopted into our family. What motivated me initially to continue to learn was our son, because I had wanted him to be able to have a conversation with his birth mom should he ever choose to want to meet and talk to her. He’s had Spanish and English spoken around him his entire life for this reason.

This morning, when as I was getting ready to walk out the door with Tony on our community safety walk, I noticed a young rabbit nibbling contentedly on the mesquite pods littering the ground. I was trying not to get close as I took pictures, so I used the zoom on my phone camera, but our mesquite-loving visitor noted me pretty quickly anyway, posture changing immediately to high alert, assessing for a possible threat.

At this point, I’ve come to expect a higher level of challenges will be facing us on as the parents of a kiddo with such specialized needs, and my emotional armor is pretty substantial and more than enough most of the time to get me through just about anything. But sometimes it can feel like I am that bunny, trying to munch away at having a peaceful life, but there’s always some crisis or problem coyote wanting to hop the fence so to speak, and it’s much harder to find adequate resources to meet those challenges when you have a kiddo with more significant needs. There are times when I can shrug it off, and others where my nervous system reacts like a bunny clambering under the gate to somewhere it thinks is safer.

We’ve had a lot of stressor coyotes hopping the fence in the past year. Nobody over here’s been eaten alive thankfully, but it’s also true that my nervous system wants a break from the stressful event parade it’s been running around in and it’s just not been coming yet. I’m sure it will, because that is life and periods of calm get sprinkled here and there even at the Quiet Crisis Next Door. But until that calmer period comes, sometimes I have to give myself a break and temporarily reduce the hab hours I am working, focusing on just the current essentials in therapy time with Tony (like his safety skills or sound canceling headphone tolerance in prep for fire drills or his tolerance of ace bandages) so I can take time off to keep my emotional system from overheating from all of this. Sometimes it’s just a lot, and I’m just a human trying to do the best I can with situations that I think could eat just about anybody alive emotionally or otherwise.

There are lots of self-care things I like to do (like my makeup), but sometimes it really helps me to read or listen to something in Spanish, because I have to focus on it so much more because it’s not my primary spoken language and it’s a lot easier to give my nervous system some room to breath if my brain isn’t as capable of multi-tasking. Watching or listening to something helps me the most because understanding native spanish speakers cuando están hablando bastante rápido es un debilidad para mi. Sometimes I focus on trying to think only in Spanish too, not just because I want the fluency (I definitely don’t have the fluency of a native Spanish speaker, though I am aiming to gain that), but because again it can stop my system from going into challenge-related stress hormone overload. I actually had part of a recent dream in Spanish and I woke up feeling happy simply because I felt that more than anything showed me how much I have gained towards my goal.

For me, it’s been such a blessing to have that bit of free time during Tony’s current ABA sessions. When I’m not having to trouble shoot a problem or clean something, I can find a few moments to watch something if I want to on my phone, or hunt down a song from something I am watching that I like. Today while I ate my lunch it was “Ana de Nadie” and the opening song for the episode I am currently watching.

I don’t have perfect answers in English or Spanish for all of the challenges life can bring. Sometimes it’s just hard all the way around. And you know, I’ve had mesquite flour before, and it gives me stomach cramps. So for my inner bunny anyways, that’s not the life I’m enjoying living for. But the good parts with my family and loved ones definitely are. But sometimes I still just need to engage in something capable of requiring as much focus as possible to prevent ruminating or over-analyzing. Maybe tomorrow it will be watching an episode of “El Amor Invencible” while I wash dishes. That is, after all, what I have for my family regardless of the stress.

I was on my exercise bike trying to pedal off some stress last week when Tony came to hug me from behind…I wanted a picture of that moment, but this is the closest I got before he was running off across the room to do something else.
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Any Moment Can Become Therapy

Posted on by Ariana
Tony’s foot, a few minutes after injury, before ice…

I had stepped out of the house during the last few minutes of physical therapy earlier this week to take out the trash. When I came back in, I noticed Tony was limping as he walked over to his speech device and asked me to help him. Apparently he had used his foot to move one of the kitchen benches out of the way while putting away some toys, and he unfortunately injured his foot in the process.

In asking for help, that didn’t mean he liked the help I had to offer.

Ice?

Didn’t want to keep it on, with or without a cloth underneath it.

Ace bandage? Couldn’t even get it wrapped before he was ripping it off and saying “uh-uh.”

Because there was swelling involved and he didn’t want to walk on it anyway, the first thing we worked on was icing. I started out with just a count of 10 seconds, giving him an MnM for each period. Since the intervals were brief, I didn’t bother putting a cloth underneath it. He was eventually able to work up to several minutes while scrolling through pictures on my phone, a preferred activity.

I like using frozen peas that have been banged against the counter to break up larger chunks because I feel like it conforms better to whatever needs to be iced…

For the bandage, I just started with having him tolerate it draped across the foot without being wrapped…so, just contacting his skin. I was able to get him to tolerate a few minutes with it loosely wrapped around his foot- again while scrolling through pictures- but this remains an item that will need more targeted practice going forward so that he can tolerate the use for the amount of time required for an injury. Because he’s still not going to keep it on for more than a few minutes regardless of the reinforcer used. We’ve not really done any work towards tolerating this type of bandage before because he’s not needed one, and we had more pressing matters to address first, but from here on out this is going to be added to his hab therapy schedule.

This is a screenshot of a still that was in the camera via the app carousel when Tony was scrolling through it to locate my photos so he could look through them while wearing the ace bandage…

For the most part we’ve needed to rely on Ibuprofen and reducing his physical activities and therapy schedule as it heals. His swelling is mostly gone, his limp is improving, and he’s trying to do some running and jumping despite my attempts to discourage him in that.

So many times I find something comes up when we’re not in or expecting to be in a regular therapy session, but it still requires a therapeutic approach to work through. The most important thing is to follow his cues in terms of how long he’s comfortable tolerating something and what he considers to be a desirable item to receive in exchange for doing so.

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Where Stress & Caregiving Collide

Posted on by Ariana
Me, waiting for results of the diagnostic imaging last Friday, wondering why we’re all sitting here in tops that have a huge gap between the ties in the middle of the chest in a room with nearly floor to ceiling windows and no blinds, all photos by Ariana

I had a series of revelations recently about what some of my more significant stressors are and how they are impacting my health. The contrast was made by comparing some blood pressure readings, interestingly enough.

A couple of months ago I needed to take Tony in to a follow up I had with my allergist because nobody was available to babysit him. He’d never been to that office before, and medical settings still aren’t his favorite even when he knows he’s not the one being seen. And for me, the parts that were most stressful were the parts where they were trying to take my blood pressure and I was worried he was going to run out the door while I was strapped to something that would get ripped out of the wall if I had to chase after him. 140 was the top number, which is insanely high for me. Overall, our little man did at least stay in the room with prompting, though he jumped up and down all over the exam table while I was talking to the doc, ripped paper off of the exam table, and generally was living his very best ADHD bouncing around all over the place kind of life. He did at least shake hands with Dr. B, and I wasn’t sure if he would since he’s never met him before.

When I got home, my blood pressure top number was 112. Contrast both of those with an appointment I had with an optometrist a couple of weeks ago, where Tony was at home with his dad, and the top number was 109.

Typically, even when I’m anxious or only moderately stressed I’m well below the upper limits of normal. But there are a couple of things that will max stress me out, the first of which was a scenario that occurred at the allergist’s office, where I wasn’t sure if I’d be able to keep Tony safe and get my own exam done at the same time.

Me, the day before I got one of my acidic eye products in my left eye last week…

The second is medical situations that arise where I could or will definitely need to get in to see a specialist ASAP, because often there still isn’t anybody available on that type of short notice who can provide coverage unless Andy happens to have a day off that coincides with whatever problem cropped up. He works at an urgent care, and so that’s entirely a matter of luck. That wasn’t a factor with scheduling the diagnostic mammogram, that really was a matter of limited availability for appointments, but it is often why certain concerns that crop up I/we take care of at home.

I am luckier than some, because I am married to someone who works in healthcare. For example, my husband closed up a laceration on my scalp a few years ago using a technique he was taught that involved knotting together strands of hair because he was at work when it happened and I didn’t have any babysitting options, so I put pressure on it until the bleeding slowed, dumped clotting powder on it, and then he closed it up when he got home. He checked a recent eye injury to make sure there wasn’t an ulceration (the rest of everything I needed to know for how to care for that I’ve learned from previous eye injuries). Anything I am unsure if I will need a doctor for or not he can tell me more specific feedback about whether he thinks I will or not.

skipping makeup for several days is a must in this type of situation…
Today, returning to makeup 😀

But that doesn’t mean I can find someone to babysit Tony in the time frame that is needed if I do.

And sometimes, it really sucks how that feels.

After the blood pressure revelation, I started trying to increase my meditation, piano practice, puzzle assembly, and anything else that I could squeeze in self-care wise. And for a while, life just took that adjustment and just met it with even more stress. Sometimes that is how life is. Part of why I am trying to focus more on positive things with my posts is because as much as anybody I need reminders that the good parts are still there sometimes.

Because they are.

Even when it’s hard.

Even when it’s stressful.

And those are the parts I want to live every second of my life for.

A great thing that happened this week: Tony succeeding for the first time in making it all the way to the top of this climbing apparatus.
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My Experience With A Breast Dimple And A Little Too Much Google

Posted on by Ariana
The dimple/dent line on my breast, May 19th, 2023. Photo by Ari

If you are not already a subscriber to this blog or on my e-mail list, I know exactly why you are here.

You read a news article several years ago with the story of a woman who wanted to raise awareness that a dent or dimple in the breast can cause cancer. I definitely think that woman rocks for raising awareness of this, because certainly it can be a sign of cancer… or something else. And, you just found one of these dents or dimples on your breast, and after looking at Google, maybe freaking out some, and then calling your doctor, you googled to try and find any first person accounts of that type of thing being caused by something benign.

And, you didn’t find much. And so now, you’re maybe freaking out just a little bit more.

Which, is how you as a person who doesn’t have one of our son’s rare genetic disorders and works in a field that doesn’t encounter them found me…

So, I am 47 and that picture above is a carefully edited picture of my boob so that it cannot be easily identified as such (I’m actually not really squeamish about showing more of the picture, but therapists and other professionals do read this blog so cropped it is), and I have marked the dimple/indent line that I observed three weeks ago. And, I did exactly what you did if google has led you here…and I found one first person anecdotal account of something like this being benign during the time I was searching before I finally decided google was freaking me out and closed the tabs because pretty much every other first person account I read was talking about how theirs’ ended up being caused by cancer.

And it was like pouring gasoline on my stress level and flipping a blow torch on it, if I’m being perfectly honest, and it took a lot of work for me to find my positivity and hang on tight. All I could think about were the people who needed me, who will continue to need me. And that may be something you are feeling the weight of also.

Today I was officially told that there was no cause for concern for me, and just driving home feeling that joy isn’t enough for me to fully punctuate this experience. I want to give you just one more positive story to hold onto to maybe keep the flames of stress at bay. Because I do know how much that helps to have a little bit of hope when you have to wait such a long time to get testing done. And if I hadn’t been willing to drive to a facility an hour from my house, I would have been waiting more than double three weeks, it would have been into July for any diagnostic appointments on my side of this metropolis.

I want to put my arms around you if you’re the hugging kind and hold you tight if that is the kind of wait you’re in for, because I know it doesn’t help. Since I can’t do that, I’m giving you my experience instead.

Yes, make that appointment and definitely get it checked out. Maybe it will be something that needs treatment, so it is so much better to be safe than sorry, and the quicker you catch something the better the outcome.

But, it definitely could also be nothing you need to worry about negatively impacting your health. So, virtual hugs from me! Hang in there, and maybe put the google down- on this subject at least- after you finish reading this.

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June Gratitude & Some Reading

Posted on by Ariana
Tony, sitting and waiting while we registered him for school, photo by Ariana.

To Tony’s Entire Therapy Team:

Thank You…

Each and every one of you took time out of your busy schedules in some way to either show up at meetings or write documentation to help our son’s educational advocate better understand his needs or to speak to those needs directly to school district representatives. This has been such a long journey for our family to get to this point, and each of you have had a role in the successes that have brought us here. None of this would be possible without the work you do, the expertise, and the time you contribute. I am beyond grateful to each of your for sharing even more of your time as we work to provide the smoothest transition possible back into the school system. Thank you.

A General Content Note:

We are going to remain busy for a while as we support extra meetings and assessments heading into Tony’s August reintroduction into our public school district. I am thankful that as my POTS improves, I have more and more energy every day…but part of the journey I need most right now is to find more of a balance where I recoup some personal time. When Tony’s new RBT comes in, and I’m not needed, I’m taking time to work on my ukulele skills or just something that has nothing to do with therapy and everything to do with self-nurturance. So, I’m still gonna be keeping the posts a little bit shorter for the next month or two at least. And, because I just know I have a limited desire to think about things that are too serious right now, and I know some of my loved ones have more serious things going on in their lives, my reading recommendation is going to be strictly for the fun of it.

Some Reading To Consider

Weapons of Old, Kent Wayne

Some time ago, I recommended the first book in this series because I really loved it. This is the second book in his young adult series, and I loved it enough to give it one of my currently-oh-so-rare-public-reviews. So, naturally, I am recommending it here also.

That being said, we need to get the disclaimers out of the way. First, for my religious loved ones who have certain criteria for what is appropriate content for media consumption, this book absolutely meets your cleanliness standards. That being said, just a reminder, many of his blog posts feature significantly more mature content as regards to sexuality. So, this book and the first one are definitely safe reading for your standards, the blog posts are best not to stick your toes into if you want to avoid descriptive sexual content. Second, the author and I have chatted regularly on-line since the release of his first book. Now, he’s under no obligation to continue to chat with me, and he has never, ever asked me to even finish reading any of his books much less review them (thank you for that, BTW). As limited as my current ability is to go out and interact with people who are not my son’s therapists, I really have been super grateful for those conversations and that interaction. So I naturally have biases because of that, but I’ve worked really hard to keep them out of my opinion of this book.

So, because I did review it on Goodreads, I’m not going to be super thorough here. Kent demonstrates enormous creativity in his world building in this book, and because I have read some of his other stuff, I can see his evolution as a writer and I think this book showed considerable skill in that regards. And I really cannot say enough good things about the creativity portion. I turned 47 recently, and I’ve been reading fantasy since elementary school, and so many ideas are just rewarmed up from book to book, but literally I’ve never encountered some of the types of things he describes in his world building for this book, and I loved that. And some of the scenes just really cracked me up. When I said I was exhausted a couple months back, it was the emotional kind because of all the things that have been going on. I was struggling to find my enthusiasm for reading when I started this book, and it was just something I was doing because it’s a rescue habit for me to be doing the kinds of things that help me feel better when life is hard (I just trust that if I follow through, the feeling will eventually find me), but the humor in the earlier parts of the book sparked a reawakening of my ability to feel that love of the moment in reading, and by about half-way through, I was anxious if I had to stop reading it because I wanted to see what happened next. So for those reasons, I am happy to recommend this book to any fellow fantasy lovers.

Ariana's Posts

Gonna Pin The Positive…

Posted on by Ariana
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! 😀