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What I Think Every Neurotypical Therapist, Teacher, Or Paraprofessional Should Know

Posted on by Ariana
photo by Ariana

As you are looking at this picture, I don’t want you to ask yourself should our son have been up there on collapsed bleachers. I don’t want you to think about whether or not he can get down safely on his own. Those are, of course, valid questions, but there’s really only one thing I want you to focus on in this picture.

The expression on his face.

Notice how glazed over his eyes are? That he appears disoriented?

I have encountered many times on this therapy journey we have been on as a family the idea that if a skill is learned and mastered in home, then it can be taken in public where it will transfer over to other environments and ensure safety and the same results for everybody involved. I can’t emphasize strongly enough that this is completely a neurotypical perspective, the perspective of someone who doesn’t know what it’s like to have more debilitating sensory differences. And unfortunately, it just won’t work that way in my opinion or experience for an individual who does have a certain degree of sensory differences.

Anyone with anything more than a minor sensory difference can tell you that behaviors and reactions in and to anything in public or the community at large can happen entirely in response to the different sensory stimuli present in that environment, and those are things that cannot be adequately replicated or prepared for in home. They require being present in each and every specific environment, because what one public place is like is not what every other one is like in terms of sensory stimuli. And it requires time to learn coping strategies and to adjust to each of the different environments and stimuli.

Tony has capabilities for tolerance of structured tasks and compliance with safety skills that hasn’t fully transferred over into the school environment yet, nor can his tolerance for those things in other environments guarantee an immediate transfer over, because there are a combination of elements he is being exposed to that are unique to the individual school setting. The Tony that all of his therapists recommended as being ready for school doesn’t always seem to be the same little boy walking into this school right now because there’s so much more going on here for him to adjust to. As he continues to get used to the sensory stimuli in the environment, only then will he be able to react as he would in home or a setting he’s already more familiar with and comfortable in.

On the day that picture was taken in PE, he was feeling overwhelmed by the sound level coming out of a speaker box playing music as light displays on its surface flashed, by the sounds being produced by the other kiddos in his class which can sometimes be overwhelming by itself because of the intensity and overlap of the sounds, and was just trying to find a way to get as far away from all that noise as possible and still follow my instructions to stay in the gym. And because he struggles more with the motor planning for climbing down, when he would climb up there initially it would take a minute or two sometimes for him to come down or to work up the confidence to overcome his fear of falling and try.

Now most days he doesn’t even try to climb those bleachers, because I have been providing reminders and tangible reinforcement for following the rules (and his response time for getting down is getting faster and faster as his muscles adjust to the movements and he gains confidence in doing that). But he still sometimes lays at their base, or against a wall, with his back to everything else, trying to minimize the amount of sensory input coming his way. And sometimes, he really struggles to do functional tasks right away when we leave PE if it’s been very loud in there.

His experience of the world around him isn’t the same as a person with a typically functioning nervous system, nor are his reactions. This is why his current team recommended building his tolerance for an entire day there at the speed he can tolerate, and in many ways his behaviors tell us exactly how well he is or isn’t tolerating the environment. When his sensory system is overloaded, his reactions come more from a flight or fight level than the conscious reasoning that would govern a more measured response that remembers and follows rules because his nervous system is feeling all that extra pressure. Each week I see him blossoming more and more in the school setting, but of course I must acknowledge he still has areas where growth is necessary.

And it will come. We know this because it has in other environments, but it won’t come because he can already do those things in other environments, otherwise his data points would look like they do in other places. Increasingly appropriate reactions will continue to come as his tolerance to the environment improves enough to move farther out of fight or flight reactions. And the time table for that is entirely determined by his neurology, which is beyond the power for anyone’s expectations or desires to dictate to.

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Seeing The Potential Versus The Problems

Posted on by Ariana
A fully clothed Tony sitting on his Aunt Randi’s lap while she watched him a couple weeks ago for my surgery, selfie by Randi, she’s cropped from the picture out of respect to her wishes.

My sweet sister-in-law, Randi, sometimes babysits our son when I have medical appointments. For a recent appointment I had with my allergist, I got him dressed and asked him to keep his clothes on for the entire time his Aunt was here. Tony has a history of pretty intense tactile defensiveness as his skin nerves are much more sensitive than a neurotypically “normal” person, so he usually wears only his underwear in house unless there is a therapy session in progress. Currently, after programming I did in habilitative therapy, he will keep his clothes on in home for the entirety of all therapy sessions (though he didn’t use to be able to tolerate that), even ones that last 5 hours for ABA or Hab, but this is the first time he’d been asked to keep them on for his Aunt.

I returned home about 3 hours later, and when I opened the door, there was my sweet, fully clothed son to greet me at the door, eyes wide to the max, expression nervous…and his shirt was on backwards. So I commented to Randi that he must have used the bathroom, because he will sometimes take his clothes off in home to do that during therapy before putting them back on so I figured that to have been the case.

Not quite.

Because I didn’t repeat the expectation for his clothes to stay on in front of Randi when she arrived, he knew she didn’t know. So he stripped completely down (even took of the undies), and ran around the house butt naked. She got him to “compromise” and put his briefs back on, but when he heard the garage door open, she told me he ran and put his clothes back on as fast as he could. And they were all on when I walked in the door, just the wolf on his shirt wasn’t in the front which is what gave him away.

Sometimes people think individuals with our son’s level of Autism don’t really emote (they definitely do), but he had a clearly recognizable “I’ve been busted” expression on his face after I heard Randi’s recounting. Clearly our little man was hoping I’d think he’d kept his clothes on the entire time like I’d asked.

Three hours and a mad dash to get dressed before I got inside…and he kept it in his head the whole time what I had asked him to do and was aware his Aunt Randi didn’t know and tried to capitalize on both in a way that brought him less clothes and all the rewards that would come from him actually having kept them on.

We can see the problems, or we can see the potential.

Impulse control is an area that’s been more impacted for our son with his combination of conditions, and he has to be given practice controlling the urge to do things he wants to do, like turn lights off when he shouldn’t, as part of his therapy programming so that his brain can develop that control. Photo by Ariana.

Should he have kept them on? Sure. But, moments like this are the ones people won’t believe until they see it for themselves, and they are part of why I have worked so hard and given up so much of my own life and time to help him on this journey. Underneath the enormous challenges that have been brought to him by his combined disabilities, is a kiddo who can remember something his new school speech therapist mentioned once at the end of a session and ask for it on his speech device the very next day at the time speech therapy would typically be happening for him in school.

I’ve said it before and I’ll say it again, he’s a lot smarter than most people realize. That doesn’t mean I think he’s going to cooperate cheerfully with learning certain things at first. As we have discussed before, he has some huge challenges that make most everything feel pretty difficult for him. I know if someone asked me to work on something I was doing way worse than everybody around me on all day every day, I’d probably not be so cheerful all the time either. And that’s a whole lot of stuff for him. In my opinion it’s much easier to feel cheerful when everything is not so difficult. Though it may not be easy for him, the potential is definitely there for him to continue to grow so I’m just going to prioritize seeing that more than any problem that arises.

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More Than A Backdrop Or A Therapy Prop

Posted on by Ariana
Getting ready for a school day, photos by Ariana

There are times when I have encountered the sentiment in others that I don’t have much of a right to express any sort of discomforts over the personal challenges I have faced or the sacrifices I have made to provide the intensive level of support required for our son. He is the one with the disabilities I am told by people who feel that way. And I have chosen to be there and do those things.

True. Of course that is all true.

The disabilities I have written about are his, however, he’s not the only person in this house to have developed additional needs because of them. What happens to him isn’t just happening to him, and sometimes all I want is for people to look at what I am going through and validate the depth of difficulty that has existed for me personally. To hear me and to hold me when the pain of certain experiences has wounded me and left me emotionally limping for a time or even curled up into a mental ball (because as positive as I prefer to be that’s definitely happened). To listen to me when I say this is what he is capable of, this is his clinical history, this is how he’s going to respond to things- especially the part about his capabilities- and to really be willing to give him adequate chances to show all of that to them.

I may understand when they choose not to see all of that the same way, but I still feel a sliver of hurt sometimes when this is the case because I just want to be seen as my own human who also gets to have needs in all of this.

And, I want people to really recognize that as his mom, I’m more than his backdrop. I am my own person, and sometimes the things we go through together profoundly impact me. Have left me feeling like my own self-care needs don’t have the same right to matter if and when they even get to. Because the sacrifices for me personally have run deep, the need I feel for the progress to keep flowing in is sometimes near ravenous.

To be sure what his neurology brought him into the world experiencing has been brutally hard for him (especially in his first three years of life) and my heart has felt a depth of pain for that only a parent can understand. I love my son and I want him to have choices in his future (and again, to be clear, I love both of my children the same, but their needs are dramatically different). I want him to be able to live in the community and find joy. I remember a time when we couldn’t get him into most places, and when we had enough therapeutic break throughs to get in the doors for even a few minutes, we couldn’t do so without me running after him every few seconds. Tonight, we were in a busy Target he’s more familiar with for 54 minutes and he stopped and came back with my verbal request every time he walked more than a few feet away from me. And, it was a school day with ABA afterwards, so he had a full day of activities (many of which were outside of the home) and still tolerated the experience so well.

A recent therapy session during another family member’s doctor’s visit, where the goal was to not rip the paper off the exam table. Mission accomplished (left it on for over an hour), and it’s the first time he’s been able to control his impulse to do that. Almost every moment with him can turn into a therapy moment.

The skills and tolerance he has now would not have happened without what has been done by everyone involved, and when I see how far he’s come, I feel like it’s been worth it to me the prices I have paid personally.

But sometimes, I still just really need a hug to help me hold it all together.

And sometimes, not even the makeup application can hide that…
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Can We See All The Sides?

Posted on by Ariana
Screenshot, group e-mail sent 12/28/2016, photos by Ariana

I thought of all the ways I could write this post, and I decided just to wrap it around a screenshot from an e-mail I sent some friends on December 28, 2016. I am going to re-type it just following this in case the images don’t show up well for those who get my posts via e-mail, though a few of my readers may remember this e-mail already because it was a group e-mail that some of you were recipients of. “But right now, I just feel on top of the world with that in some ways too, because he’s been out of diapers at home for 3 weeks now, and been going out in public without them this past week….and it’s been going so super, super good. Sometimes though, I get frustrated because it’s like people won’t give him the same level of trust with his potty training skills they would a “normal” kiddo. At his occupational therapy today, the therapist wouldn’t let him go into the ball pit because she didn’t I guess trust that he wouldn’t pee in their pit. But he hasn’t been having accidents in public, and he’s been doing so good at home, it just really was hard for me. She would have never said the same thing to a kiddo who didn’t have his disorders. But that’s the extent of my drama right now. “

I decided to also add a screenshot of the last order of diapers we ever made, which was during the time I was buying pretty much everything that wasn’t groceries at Amazon.

I know there’s multiple sides to this story. Some will sympathize with the OT because they too would feel that a diagnosis list like Tony’s merits extra scrutiny and/or caution for any type of milestone. Please note, I have never named this OT on this blog nor will I because I have taken a public position against how this was handled and I know that the details will be recognizable to not just her but every therapist working with him at that clinic in 2016. My desire here is always to share what things look like from our end and never to shame a person on-line. And in the interest of that, I would say that in being able to see the OT’s perspective, it is important for others to recognize that real damage can be done to the feelings of self-worth and esteem of the disabled individual when they go through this type of situation.

Tony, 2018, in underwear at our house. Been in them for 2 years at that point even, and I assure you I don’t want to clean my home up from frequent potty accidents anymore than I would a public location.

Parents of kiddos with certain levels of challenges may more easily see my side of this because they know what it’s like to have every accomplishment their kiddo makes, every inch of progress, doubted and to have proof required in excess of that which is required of a non-disabled kiddo. They will know what it feels like to have others refuse to see the progress. They will see the emotional toll it takes on their children (who definitely will recognize and understand when others doubt them and can have very strong emotional hurts from that). Other parents may also feel the additional pain of having many people be more sympathetic to the position of the person with the doubts than the family because it can make these circumstances feel even more isolating and under-supported. I know even if I personally can understand on some level the doubts and concerns another person has, it always still hurts me as a person and a parent and my feelings are just as worthy of validation and support and I imagine other parents may feel the same way.

What isn’t in that screenshot is how I handled the situation that day. The OT involved would not allow our son into the ball pit unless I agreed to put a diaper on him. I refused to put a diaper on him because I knew it would be like saying that I didn’t believe in him either and that I wasn’t going to stand up for him to others who doubted him.

Tony getting a drink before using a public bathroom in 2019, he always tells us in public when he needs to use the bathroom on his speech device.

The ball pit was one of the things he loved most about that clinic, so I wasn’t surprised when she told me it was the worst session she’d ever had with him. She’d made it clear through her words and actions that she didn’t believe in his ability to have progressed in that manner and that combined with being kept from the ball pit when other kiddos were not really upset him.

People still ask me if he’s potty trained and if he has accidents at night and they’re almost always surprised by the answer- and he’s been out of diapers for nearly 7 years now. Yes, he’s potty trained. No, he doesn’t have accidents at night, and no he doesn’t have accidents in public, and we got rid of the diapers once he’d demonstrated the ability to wake up and use the bathroom at night without wet diapers.

Everyone has the right to feel their own feelings and their own thoughts about this. Including me, but especially including Tony. Even if I can see the perspective, my heart still hurts some from that kind of response and I know his does even more because it’s about him. Sometimes I think it’s easy for people to get hung up on Tony and his behaviors, but it is important for everyone to know that his behaviors are often how he as a non-verbal individual chooses to communicate first (because it’s often quicker and more immediate when he’s really upset than walking to his speech device) about how he feels about a person doubting him (because he’s really pretty good about picking up on that) and or holding him to a different standard from even other kiddos he sees utilizing the same types of services.

Tony, October 2023.
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Some Halloween Gratitude

Posted on by Ariana
On our way home from trick-or-treating this past Tuesday, photos by Ariana

My friends, family, and loved ones: I have so many things I need to do still tonight and for the remainder of the week. My eloquence is toast, my desire to create artistically pleasing phrases to describe our circumstances is worn to silence by hand-wringing over the to-do list.

So briefly: I am grateful for our second truly fabulous Halloween trick-or-treating experience. We went to houses we didn’t practice getting used to the displays for, he happily stayed out 10 minutes longer than last year (which is a huge success given that he spent 2 hours and 5 minutes at school earlier in the day with a different from his usual set of school activities and routine). For Tony, the school transition is a massive change by itself in his life and to tackle both in one day is a lot for his nervous system, but he handled it well. He independently said “trick or treat” and “thank you” to a higher percentage of people we interacted with. He even has a chewelry item he recently began to tolerate wearing and he uses that when we are at school or in other public locations, and he took it with us on Halloween also.

People have asked me what I went as and I told them as myself: a tired mom. We started out with an empty bucket, and returned home with one full enough I had to carry the box of popcorn we got at one of the houses we stopped at for him. This past Tuesday was a beautiful evening and that is all I have time to share for this week.

Ariana's Posts

Hidden Costs & Some Dental Prep Strategies

Posted on by Ariana
Just finishing work with an electric blood pressure device in habilitation therapy, photos by Ariana

Sometimes on this blog I have used my October posts to delve into some of the darker aspects of what a family of a loved one with significant disability-related challenges can experience. And, I thought about it this year too. I was thinking something about playing on the words of an older LeAnn Rimes song, “Can’t Fight The…” except, just a slight word change where I replaced “moonlight” with “trauma.” I was relishing the discordant feel of the music with the modified title and lyrics and how I could fit a description or two of memories or experiences that would really twist that point home how deep the emotional impact from some of these experiences can be for the family or primary caregiver.

And then I just couldn’t. Though it may be apt, it may be real, and I may live it like I feel it sometimes, my preference is to focus on something more proactive right now because it just emotionally feels less traumatizing to my right now. So, I would like to share a brief moment that broke yet another piece of my heart off and then flesh out my therapy strategies to glue it back in place and keep it there in the future.

Perhaps it has been clear from what I have written about, but I have focused a significant amount of my therapy efforts in the past couple of years on school readiness goals. Because of the pandemic, I needed to devote a significant portion of the programming for tolerance of medical materials to N95 masks. Yes, I worked on some other medical stuff and we’ve managed to get our little man to the point where he can tolerate most portions of a primary care medical exam, there wasn’t time for me to work on everything so I focused the least on dental tools.

When our son went in for his general anesthesia dental procedure earlier this month, 4 people had to hold him down for the gas mask portion while he was put to sleep. And it was just like shards of glass to my emotions to see how scared he was, to know that was necessary.

So, I decided we were going to do something about it as his therapy hours no longer need to be focused as intensely on school readiness. I ordered two types of facial masks for distributing gases. I ordered some dental xray clips. Because I don’t have enough money for actual sensors, I decided I was going to use Laffy Taffy on the clips because they are roughly the same size and already covered in a plastic casing that might approximate the sensation of a sensor cover.

For the masks, a couple of weeks ago I started out with him sitting in a chair and just touching the mask to his face and then I would pull it right back off. Then I advanced to a few seconds when he was tolerating that well. Then I asked him to lay down in a specific area before applying the mask. Once he was tolerating it for about 15 seconds, I started rubbing lavender oil in the top portion of the mask to acclimate him to the presence of smells with these masks. For the x-ray clips, because those just arrived recently, we’re at just tolerating a couple seconds in his mouth. I’ll need to work on him not moving his head with those. And I’ve increased the frequency we do dental tool work and have added a bright light above him component. And, when we go in for his next 6 month visual check up, I am going to bring my masks from home so that we can practice in the dental exam chair because I am certainly not going to expect them to dirty their own, since it will certainly be beneficial to have him practice in the dentist’s office itself.

This is often an invisible cost of trying to help an individual with profound sensory differences adjust to common medical or dental procedures, the supplies needed to practice and increase tolerance with. Insurance doesn’t pay for it. The company who makes sure I’m compliant with DDD regulations in my habilitation therapy doesn’t pay for it. So if I want to help my son (and therefore me) be less traumatized by future dental experiences involving anesthesia and maybe some day no longer need that even, we have to find a way to pay for anything that might be necessary to do so.

And then of course there’s the time spent doing this. It’s taken years for me to get our son to the point where he can sit through an electric blood pressure reading. Years. But now he can and he’s no longer terrified by it.

So, I think it’s worth it. For every little thing that no longer brings him trauma to experience, that’s one less piece of my heart that needs to be found and glued back together. One less scary memory or experience for him. And a future of medical moments that are easier for everybody involved. So I spend the time and I spend the money because I have hope next time he won’t need to be held down if I do all of this, because I have seen what hope has done and what hope can do.

Ariana's Posts

It Takes A Team

Posted on by Ariana
Practicing walking in a line with his dad as the line leader during habilitation therapy, the ace bandage was part of a therapy tolerance of stimuli task, no injury present. Photos by Ariana.

Even though I am working with Tony on his tolerance of the school environment and the behavioral skills requisite directly during the two hours he’s currently at the school itself, I am also needing to do other things outside of school to promote the best outcomes.

As his habilitative therapist, we are practicing skills such as walking in a line and answering attendance questions. As his mom, I recognize the school budgets are limited and that if my kiddo needs a body sock in that environment to help support his sensory needs, I have to make sure one we have paid for goes in with him so that it’s available.

For a kiddo whose needs require a level of support akin to what is being given with Tony, it takes a team to support a transition into the school environment. I personally am filling three of those team roles: mom, habilitative therapist, and one-to-one instructional aide. So, that means that by default I talk the most about what I am doing. But there are other team players involved, and the successes Tony is having are built upon the actions and supports of all of them.

Tony putting a lid on the Play-do nearing 10 minutes calmly participating in art class after spending the first 24 minutes of specials in PE.

His teacher Ms. L has been phenomenally supportive, and though I am not naming her directly on this blog, I want to give a shout out to the level of support she has given. When we discussed that Tony was confused by the rotating weekly specials schedule and that he had a strong preference for PE, she offered to obtain approval for him to attend PE every week as his special. Initially, I had declined that offer because I wanted him to work on maintaining the same schedule we had introduced. But in reflecting about it, I realized I had been given a choice to choose my specials in middle school and so many choices get taken away from individuals like Tony that I felt it was best to ask him what he wanted. So after talking to Tony about it and hearing the response he gave on his speech device (PE all the way), I shared that with her and she got PE for each special approved for him, though Tony often wants to still spend a few minutes in the other specials his class is going to because he’s become accustomed to going to them.

His BCBA, Ms. K, has also given so much assistance and feedback. She was an active participant in the IEP process, and she goes to his school to observe him monthly to provide me with input on how I can provide the best support possible for any behavioral concerns that pop up. Just this week she recommended some stress squeeze toys for Tony to give his hands something else to do that competes with a stimming behavior he has been doing for years that was harmless until he developed the flexibility recently to strike with enough force to bruise his shoulders. The reduction in his attempts to do this was immediate with the introduction of the stress squish toys, and that input from her is going to be especially beneficial in the school environment, where he’s currently more likely to engage in that stim because of all of the additional sensory processing he’s having to do.

The stim, which we are not blocking because that only makes him angry and therefore want to do it more, but rather are prompting and teaching replacement behaviors for…
right now his favorite for in-home use is a banana stress squish toy we found on a therapy outing to Joann’s of all places, we stopped there before we hit the Big 5 where we were planning on purchasing squish toys.

Tony himself is part of this team, because he has to make choices to be brave and try new things, to do the tasks that are asked of him, and he gave his feedback certainly about what he wanted to do about his specials (he was so happy when Ms. L said she was going to get approval for him to do so that he gave her a side hug).

And then all of these pieces come back to me again. As his mom, I have to make sure Tony shows up to school and I talk to him about what will be happening in that environment. I have to make sure stress squish toys are purchased and available, and I support their teaching and use in all therapy environments (not just my hab sessions).

But as a team, we are doing it. Tony is doing it, and it is such a joy for me watching him grow into this environment.

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Sight Word Show & Tell

Posted on by Ariana

Some day, my son is definitely going to be able to read. He can do a little bit of spelling now using apps, some sight word memory games (where the sight words are turned over and he creates matches from memory). Lately I have been practicing his scanning with him by giving him fields of sight words varying in number (last two sessions were 12-13), putting them on the table in different orders each trial and giving his stack to sort that are arranged in different orders from what is on the table. His average accuracy is around 88% with fields that high, 100% with fields half that size. I switch the words each day, and he’s usually hitting 100% accuracy for even the larger fields by the last trial each day. Sometimes I ask him to give me a certain word when we are cleaning up the cards, and his accuracy goes down to about 70% for that. I’ll still take it, because what it tells me is that he recognizes those words and it’s more than just luck.

As I see it, Tony’s primary motivation for learning how to read is going to be so that he can be more specific in telling us about things he wants because then he’ll be able to select from larger lists of words on his speech device. For the learning part, there still needs to be time with his kindle or candy at the end of any task before he’s willing to do the tasks he needs to learn. He’s still not thrilled to be doing this sort of thing, and we have to start out slow and build up just like everything else or even then he won’t want to cooperate because it feels harder for him to focus for longer periods of time.

But, someday we won’t need that because he will see how it can benefit him more directly, and that is going to be a beautiful day. I put some video clips of recent matching sessions below for those of you who are viewing this on the web page.

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Some Gratitude & Reading

Posted on by Ariana
Us, several minutes after we arrived for Tony’s general anesthesia dental procedure, sending Andy a text that we made it safely, photo by Ariana

A Heartfelt Moment Of Gratitude

These are just very heavy times. By the very nature of some of the things a family such as ours can experience, this is not generally a light-hearted blog, the kind that a person would turn to for distractions when the headlines are detailing the stark horrors of wars and death. I promise each of you no drama this week, but rather I will start off with something I am grateful for even in a not so easy circumstance.

Once, several years ago, I wrote in one of my product reviews about the special circle in hell that can await a parent of a disabled kiddo who needs general anesthesia for their dental cleanings or fillings. This is the circle reserved for parents of kiddos with limited impulse control, heavily limited risk assessment, the ability to strategize, and the urge to self-harm when they don’t get their way, who are told they can’t eat or drink for the first 4-5 hours they are awake while they await their check in time and procedure. For Tony, who still needs that type of dental intervention, while thankfully he no longer hits his head, tantrums and attempts to create diversions or push his way to food could still be a very real possibility in that type of scenario, and his overall mood could be either hysterical or combative by the time we arrived under those conditions.

This last Thursday when I showed up to our little man’s pre-anesthesia clearance at his dentist’s, I was over the moon elated to hear that his check-in time was scheduled for 5:40am. And profoundly grateful. Deeply grateful. To our son’s dental team, a million thank you’s for giving us an absolutely heavenly check in time under the circumstances.

Some Thoughts On What I Have Been Reading

Y’all, my will to write any sort of credible and comprehensive review of anything I’ve been reading is more on fall break than I am. I personally still need to do hab therapy this week, but the reviews? Uh-uh. Mentally they are frolicking away in the contemplation of spending time watching some Netflix with my honey and some more Nailed It with Hannah.

So. As brief as I possibly can, some of what I have been enjoying lately is a more lengthy visual stroll through more of the books written by Chloe Liese. Thankfully, our local e-library has quite a few of them. What I appreciate is the way she represents neurodivergent characters as romantic leads when she writes about them. I also think by writing about the mental health needs of her leads, it creates this space that tells readers “you are worthy of being seen as a romantic lead and having those needs doesn’t make you less so.” I very much love that! Recently from her, I have finished “Only When It’s Us” and “Always Only You,” and I thought they were both good reads. Quick heads up for my more conservative loved ones, there is possibly a higher level of description as regards to intimate moments than you may be comfortable with, so just heads up, maybe skip the bedroom scenes if you have an interest in trying one of these books.

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To Dream To Find More Of Me

Posted on by Ariana
Me, today, Oct 1, 2023. P.S. No poem poaching please. Thanks!

There is so much rushing, so much. My thoughts have always whirled in a rapid-fire dance across my mental stage, but life has become busier even than that. So many appointments, so many therapy sessions, so much school transition work, so much of everything. Sometimes I feel like I am hurled forward so fast I can’t even find myself on my own schedule or in my own life. Even when it’s an appointment for myself (like the OB appointment where we discussed alternate treatment options for my uterine lesion and landed on a different treatment plan that was something less invasive than a hysterectomy).

Sometimes I wish I could find the version of myself that gets to do something fun, playful, luxuriously ignorant of a to-do list as I gluttonously squander time on a regular basis.

So yesterday I did that. Mostly. I read. But I still needed to support Emily’s therapy session in terms of being her blocker for the community safety portion (no blocking needed however, our little man was on his very best and most fabulous behavior). And I did some cleaning. I cleaned and straightened a little (maybe way too little), played a little piano. Remembered that I hadn’t come up with a title for my latest poem.

Yeah, it’s still as I’m typing this currently an “untitled by Ariana” poem.

It is the hush, the pale

the frosted heart’s cry.

And in the silence a seed

that grows to only dream

to breath, to live,

to break upon the fire.

To the loneliness self-wed

a veil of ashes hones

the desires that screaming conspire

to fit the ring to bone.

I still don’t have time to title it. There it sits, as I type this feeling the urgency of getting out to our next therapy task that is currently tapping on my mental schedule, reminding me it’s filled the next slot on that dance card. And on it goes, on and on. But I still did my make up, had to ignore some other pressing thing to be done just to take that little bit of time for me, to dream and to believe that soon I can find more of me inked into my schedule for more than just medical appointments or makeup.