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Why We Can’t Walk Around All Sensory Differences, In My Opinion

Posted on by Ariana
Tony, standing and looking at a carnival event near our home, photos by Ariana

A couple of weeks ago, there was a carnival being held on the ballpark field of the elementary school near our house. I think part of optimizing efficacy for what we are trying to help our son achieve is being aware of events occurring in our neighborhood and integrating them into his therapy work. And so, I told Tony we were going to be walking past it on our daily community safety walk. I told him we wouldn’t be going in to the event itself, and we didn’t have to stop and stay in the area if he didn’t feel comfortable, but we would be walking by.

What I was leveraging to help stretch towards and increase our son’s tolerance of the crowds, noise, and visual sensory input was his comfort with the environment itself. This is an area he has been working in for years and he has a high comfort level with it. Tony likely would not have been quite so calm had he been asked to walk so close to this in a neighborhood or commercial complex he was unfamiliar with.

As it was, he followed all safety instructions and by the time we had reached the other side of the area we were walking around, he was curious enough to initiate a couple pauses lasting some minutes each where he just looked at what was happening at the event. Anybody driving by just seeing us standing there wouldn’t realize what that moment signifies for him, for me.

Two years ago, this same event had him on edge and ready to flee just seeing it from a couple blocks away. We didn’t walk anywhere near so close to it on that occasion.

Diverse parents of individuals with Autism (or Sensory Processing Disorders) and individuals who are themselves on the spectrum don’t always agree about how situations involving aversive stimuli should be handled. One of our son’s therapists recently asked my opinion about a post she had seen where the individual expressed their views that asking someone to engage in therapeutic tasks to increase their tolerance of aversive stimuli was not appropriate. I told her that while I respect the right of this individual to determine these matters for themselves, I view the matter differently.

This is, of course, just my opinion- given both as a person with some sensory differences and as a parent of a child who presented with significantly more severe sensory differences. Our son, if we hadn’t engaged in years of sensory integration therapy, would not be able to tolerate or access any environments within the community outside of our home. Environments like that school ballpark or grocery stores, he can now interact in safely, happily, and functionally because of the work we have done. I feel like this has increased both his happiness and his confidence, and it has certainly decreased the difficulty of doing certain things as a family.

And in his earlier years, he couldn’t even handle much of the sensory stimuli in our house either- so there wasn’t any place anywhere that he could avoid feeling distress of that nature. And for some other types of sensory differences, such as his inability to tolerate Band-Aids being on his skin, in addition to the medical and safety challenges that presents, it prevented him from functioning safely in an environment such as a school where any accident could cause an injury that he wouldn’t allow to be bandaged. So, I feel like therapeutically helping navigate all of this was the best path forward to any type of sustainable happiness for him.

I personally think avoiding things strengthens the fear, and my personal take is it’s better to find a way to help an individual adapt whenever possible because many things cannot be avoided. Yes, there is on-line shopping- many of us know my history with Amazon and what was going on symptom-wise for our son that necessitated doing that much of our shopping via the internet. But I still think a richer quality of life is to be found by increasing a person’s ability to engage in as many areas of the community as possible. Grocery stores, clothing stores, pharmacies, doctor’s/dentist’s offices, schools, et cetera are all part of accessing necessary services for things he needs that can’t always be found on-line.

Now is going to a carnival strictly necessary? No, of course it isn’t. Perhaps he might have chosen a different path to walk on his own, but I did make sure he knew that if he really didn’t want to be near the event anymore, we’d walk a different direction. Crowd tolerance of this nature is a goal aimed at increasing quality of life for the rest of the family- because for an individual that will likely never live independently, that is an important goal too- so we can participate in things like this together that matter to other family members when another caregiver cannot be found for him (as frequently is the case).

This year’s goals? Walking by carnivals, carousels, gaining comfort in increasing crowd sizes.

Next year’s goal? Walking into that new Mattel Adventure park when it opens. But only if Tony feels comfortable and ready to do so.

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No Such Thing As Therapy-Free Sick Days

Posted on by Ariana

Even when all of the scheduled therapy sessions have to be officially canceled for an illness.

Tony woke up one day this week with a cough sounding like a seal bark, and as a mom who nursed Hannah through several bouts of croup when she was little, I felt pretty confident that I recognized what was going on by the sound of his cough. But we still did two COVID tests on separate consecutive days just to rule that out for the comfort of everyone who might need to interact with us, because those are the times we live in.

Sometimes I have to look to what he does- like “is he holding onto that cookie when he’d normally be eating it immediately?” – to determine some of his symptoms. Photos by Ariana

I don’t know that any child who has croup feels great. Tony’s only had it once before, and his case was milder than any of Hannah’s. I would hold her upright wrapped gently in my arms all night in the Lazyboy we had at the time for the first couple nights with each of her infections because her breathing was so rough. But, when a kiddo struggles with wanting a rigid routine and can’t handle transitions from one activity to another well (or has sensory differences like tactile defensiveness), the types of things a parent needs to do to help them through that kind of illness can be pretty distressing for the child. And a parent of a kiddo with profound sensory differences cannot count on being able to reason with the kiddo and gain calm cooperation for what is needed, but is more likely to encounter a more intense fight or flight response no matter how gently the matter is approached. Which is part of why we do some of the tolerance of stimuli work we do in our son’s habilitation programs, so we can be ready for moments of illness like this.

With Tony, we’ve also done a lot of work with him since the start of the pandemic focused entirely on tolerating changes, with me continually emphasizing to him that change is the actual routine, that it is the only thing we can truly count on happening in life. In the past few months, the improvements in his ability to maintain emotional regulation with change has really shown through- even with all the stress inducing happenings going on over here. I know I mentioned the recent compliment a few posts back from his music therapy team that they’ve never seen him be so flexible as he has been recently, but they also let me know a couple weeks ago they were mastering out his self-regulation goal for music therapy and advancing to focus on cognitive-motor regulation (that mind/body motor planning connection).

For all of that, when he’s sick, I have to think therapeutically about how to frame a necessary change so that he’s more likely to accept it. That first morning, we needed to get him out into the cold air for his lungs, and I thought the best chance of that would be to tell him we’d be eating his morning chex out on the porch (so I combined a change in location/need for clothes with a part of his morning routine he loves without changing the time). When he wanted to keep his clothes on to earn a treat after we came in (something we’ve been doing in hab to expand his tolerance, we’re currently up to three hours) I let him keep them on as long as he wanted without setting a timer (I think it was what he wanted to do because it gave him a sense of routine). We weren’t actively clocked in and doing therapy, but I recognized he was looking for a sense of normalcy, so when he felt like he was ready to take them off, I gave him a treat because certainly it’s something he wouldn’t have normally done, to keep his clothes on after coming inside.

Sometimes the things I observe while providing care as his mom let me see how I can improve the efficacy of things I do in therapy. One of my ideas for how to help him learn tolerance for COVID testing was using a Q tip to swipe in his nose to practice, and we first started with him looking at the Q tip, than touching it, then letting me touch his nose, then 1 second in each nostril without moving, moving up to swiping it, then progressing the time, etc. One of the things I noticed while COVID testing him this time is that for some brands of at-home tests, the swab has nowhere near as much padding as a Q tip, and so it creates a pokier feeling in the nose for a kiddo with tactile defensiveness.

I was able to talk him into cooperating (really the cookies did the talking), but it occurred to me we should redo the entire desensitization sequence in therapy with Q tips that have most of the cotton pulled off to help him better acclimate to all possible real-world sensations for that. I also gave him permission to hold my hand and wrist, so he could feel like he had some control over what was happening.

He won’t always let a provider do something as seemingly simple (because from his perspective, it’s not simple, those sensations were once quite aversive for him and still can be less comfortable for him) as swabbing his nose for a COVID test or putting on a Band-Aid (as we saw when he got his second COVID vaccine dose and his arm was accidentally scratched by the needle while the nurse was pulling it out). He was willing to let me put the bandage on, but not the nurse. Despite the bleeding, he wouldn’t keep it on for more than the 15 minutes we’ve been working on for hab.

Shown above, a picture from the second COVID shot and a picture of his bandaged elbow from last night.

Unfortunately for our poor little guy, he ended up with an infected sore on his elbow towards the end of the first day of this current illness that keeping on a Band-Aid would be preferable for. We talked about why keeping on a Band-Aid as long as possible would be a good idea, I gave him skittles and praise for keeping it on as long as possible (the first couple were still removed in under an hour because that is what he wanted and it is always better to gain his cooperation if possible in this type of situation, but it is especially critical when there’s no other way to achieve what is needed). Today he’s had the current Band-Aid on since 8 am. And he slept with one on the sore willingly last night the entire night. He’s never been able to keep a Band-Aid on an actual injury or wound before.

I’m not happy he got sick. I never am for either of my kiddos, though it is a part of life. But I am really happy we’ve managed to have such a profound breakthrough on the tolerance of wearing Band-Aids when needed. There is so much diligence involved in keeping him from getting cuts, literally there’s a whole part of my brain that can never relax because it has to focus on that. Perhaps maybe now it can take some time off- from that at least.

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March Gratitude & Some Reading/Viewing

Posted on by Ariana
Photo by Hannah

March Gratitude

If I’m having the most honest moment I can have right now, I’d say today is a day where my brain is struggling to marshal enough external focus to write, internally those neurons are dancing away listening to Karol G’s latest single on repeat. Even though my desire to focus is definitely on strike right now, I cannot forget that I still have much to be thankful for. One truth here must be honored above all others right now: without the help of our son’s case manager from Arizona Children’s Association, we would likely still be on the hunt for an ABA provider.

To respect the privacy of everyone involved, this person remains unnamed here. But my gratitude cannot be so. Anonymous on-line but not in my heart, for what you have done, you have my deepest and most sincere appreciation. Thank you <3

Some Reading/Viewing To Consider (links where applicable in titles):

Virginia 6-year-old who shot his teacher exposed flaws in how schools treat students with disabilities, by Jeanine Santucci for USA today.

Many of us have probably already seen at least the headlines about this story, but this was the first one I personally read about it which identified this child as having a disability with an IEP that stipulated the family was expected to be present in school to help manage the behaviors of their child, something which did not happen the day of the shooting. As a child who has struggled with behaviors that many feel should rightfully have excluded him from participation within the community, behaviors which have been greatly improved by years of consistent therapeutic effort, if I could cherry pick some quotes from it that I would want everyone to dig deeply within themselves to ponder it would be these:

-“Students-who often are students with disabilities- are put on a track of essentially exclusion.”

– “Both Knackstedt and Malhar Shah, staff attorney at the Disability Rights Education and Defense Fund, said it was highly unusual that parents would be accompanying a child to class rather than that role falling to staff members provided and trained by the school district.”

-“Few would advocate removing all disciplinary measures, but giving teachers tools other than suspension and expulsion is an important step, they say.”

Those tools can only come with adequate funding. Appropriate support staff for individuals with developmental disability can only come with adequate funding. Recent reporting from ABC 15 mentions that in Arizona, teacher shortages in special education are especially acute, and low pay levels that have not kept pace with the cost of living are, in my opinion, at the heart of all of that. But it’s not just teachers that are needed, it’s adequate support in aid and therapists for special education teachers. As always, I ask each of my readers when thinking about how to engage within these matters in the community to ask themselves how they would want their children cared for if they had any of the circumstances described in this article as theirs to navigate.

A condition called POTS rose after COVID, but patients can’t find care, by Amanda Morris for the Washington Post

The first visit I had to the ER after developing symptoms for POTS, they kept asking me if I was sure I wasn’t just having anxiety given my circumstances (despite the fact that we could all see my heart rate was going down when laying down, nothing else changing about my circumstances). I think it’s important to spread awareness for this condition, especially amongst women who are both more likely to be diagnosed with POTS and more likely to be misdiagnosed with anxiety before getting a proper diagnosis. If the heart rate you have is 30 beats per minute or more higher when you are standing up than it is when you are laying down, I recommend making that part of the discussion you have with a cardiologist for an evaluation.

How to Think Like a Roman Emperor: The Stoic Philosophy of Marcus Aurelius, by Donald Robertson

This week alone I described my current circumstances as life flying at my like a stress-raging kegger and a dumpster fire of stress. I think that feeling can be common when you have a kiddo or a loved one with extensive care needs, especially when life brings you your own medical mazes to navigate at the same time, or your car engine is burning through the rings, et cetera, et cetera, et cetera. This book weaves together some stoic philosophy, history as it applies to how Marcus Aurelius used it to navigate stressors in his life, and some cognitive behavioral therapy practices that mirror stoic practices. I find so much of this to be of value and useful when confronting the difficulties of life.

The TRUTH about ANXIETY And How To HEAL It! From The Mel Robbins Podcast, with Mel Robbins interviewing guest Dr. Russell Kennedy, MD

Ok, I think the title perhaps would be better stated as a VIEW about anxiety, I do not feel I can with any confidence sell anything as the one truth about it. Nonetheless, I found his ideas to be interesting, and I loved the breathing technique he mentioned. I do think some of how we react to stress in the now can certainly be amplified by echoes from the past, and it is a powerful step in helping moments in the now feel more manageable to recognize the where and the when of that.

Cambia este hábito y cambiarás toda tu vida, Johnny Abraham TEDx talk

And, for my Spanish speaking loved ones, this is one of my favorite TED talks I have listened to this past month. I believe what he is talking about is of value to anyone, however, so perhaps maybe English captions could make this doable for anyone else who is curious. This speaker’s talk is based around the idea that as a person thinks, that is how they act, and how they are acting is how their life goes. I loved an example he used to describe how powerful, limiting, and incorrect our own thoughts can be. He speaks of how an elephant is trained when they are very small that the chain that holds them can’t be broken. But as they grow physically bigger and stronger with age, they never try because they believe what was once true in their younger life, and so that chain that could be easily broken as an adult if they try can hold them there still. So this then, is a talk about changing habitual thought patterns when needed or desired. I love also that he recommends really working at developing a new habit of thought by focusing on making those changes over a 90 day period, I think the more time a desired behavior is focused on and used, the more strength it can have as a habit.

Ariana's Posts

Finding Ways To Turn The Volume Down

Posted on by Ariana
Where’s the volume control button for life? Photos by Ariana

Tony was struggling for a while with accidentally holding down the side volume buttons on his kindle for too long, which would mute his device. His brain takes longer to get his muscles to learn how to replicate motions he sees (it is not a matter of understanding, his brain knows what it wants the muscles to do, but the connections between his brain and his muscles misfire), so it took a few weeks for him to become fully independent with the method I was teaching him of locating the sound icon on his tablet screen and using it to pull up the volume bar and manipulate it to increase his sound levels.

Once he mastered that though, he started cranking up the volume on max all the time.

On the one hand, it’s a victory to have my kiddo with the hyper sensitive hearing not only be able to tolerate that, but to crave it. On the other hand, it’s a bit too loud for me sometimes, it can bother other people when we are out in public, and it can make conversations difficult.

So I had to get him to cooperate with turning it down. I tried showing and asking him without giving him anything in return, but that wasn’t so very effective (it totally didn’t work). Since Tony fluently speaks the language and accepts the currency of skittles, the very first time I offered him skittles to lower it, that volume was independently turned down and he’s replicated compliance every time I offer skittles with the request.

We’ve been doing this less than a week now. I praise him and give random skittles for keeping it down.

And it’s been a great week for that to be happening. Life has felt like it’s been on full volume lately, with things blowing gustily through my schedule one after another, and it caused the kind of headaches that loud sounds nurture in all the wrong sorts of ways. Sometimes I just wish I could turn the volume of life down sometimes, or at least put the crisis button on mute for a while.

But I can’t.

So, I have to find a different way to make it feel like the volume is lower and more manageable. I really can’t change, for example, that my 2010 Prius needed a new engine this week, but I can focus on being thankful that when the oil started pouring out of the bottom of the engine in a few places, I was pulling into our garage. I mean, yeah, it took two hours for that tow truck to arrive…but not having to spend two hours on the side of the road with Tony, that’s some seriously reduced volume right there if I think about it.

Maybe instead of dwelling on how much it cost to repair my car I can think about how the service rep hooked me up with a loaner car from their dealership that I only had to pay a $35 deposit to use. They had my car for a week, so definitely that helped make all of this easier and I am profoundly thankful for it. They detailed my car for free too…it was so clean, I didn’t even recognize it. I pretty much don’t ever have time to wash my car, much less budget time to take it anywhere for that, and it’s not really something I feel is a necessity to budget for moneywise either. But I definitely appreciate having a clean car, so it’s something to enjoy while it lasts 😀

This is the makeup I wear when I want to reassure someone I’m not too crazy to loan a car to…

Yeah, I had an increase in allergic reactions and problems after the Xolair attempt at the end of December (all of that is calming down now, I definitely don’t want anybody to worry). But none of it was serious enough to require hospital care or my epi pen and I am beyond grateful for that, because that kept me able to still show up for and do everything else on my schedule.

I had more hives in January than I had the entire past year…those were on my chest.

Sometimes things we’re going through over here are pretty hard emotionally, and I don’t really feel like it serves my son or my family to detail all of it. And it can be hard not to let all of that blow away any chance I have to feel happy about anything. And sometimes I need to do things that aren’t hard, but I just timewise wasn’t planning on, like ABC data for the next week for our son’s new BCBA. Extra things even if they are smaller time commitments can feel stressful right now because of how maxed out I am. But, if I think about how incredibly lucky we are that he once again has ABA services that aren’t coming from me…it’s a greater gift to have that to focus on because it’s the part of this that means and matters the most to me and to our family.

And even if I don’t have time to do anything else for myself, I still spackle on my makeup for little hints of daily joy, and it helps me remember that life can be colorful and not just dark. Sometimes noticing the things that I can be grateful for can’t mute everything that’s going on, but it does make the volume seem a little less intense.

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Dear Governor Hobbs and Arizona State Legislators: Can We (Maybe) Talk About The Budget?

Posted on by Ariana
Andy, Tony, Ariana: helping Tony practice and learn community safety skills in habilitative therapy with me. Photo by Ariana

I read about it on ABC 15. I read about it on FOX 10.

Governor Hobbs vetoed the proposed budget.

So, cool. I’m not hear to discuss any one party’s views about it. To me, what it means is that while many of our state legislators and our newly elected governor don’t agree on what all should be included in the budget, it does mean that there’s still time to include some things if they are (maybe?) needed.

Like additional funding for DDD.

Like many parents of developmentally disabled children who qualify for this service, I have been acting as my son’s habilitative therapist since federal funding given to the state “allowed” DDD to be able to pay for this to provide parents the freedom to reduce their children’s exposure to outside germs. My son was already approved for habilitative therapy before the pandemic, and we absolutely have been willing and looking for people other than me to fill those hours and provide those services ever since the first cases of COVID hit our community.

We just couldn’t find a therapist out where we live who was able to do so…and so like many other families, I have been using this program to be able to provide my son services he wouldn’t otherwise be getting anywhere but on a paper saying he was approved for them.

Hours that should have been covered and paid for regardless of who is working them. So…it leaves me to wonder.

If DDD has enough funding to pay for a habilitative therapist for every child who qualifies for that therapy, than why did they need extra funding from the federal government related to the pandemic to pay parents such as myself to do this therapy who were unable to find a therapist outside of the family?

Tony practicing functional skills, functional waiting, safety skills, and appropriate sitting while in a public space during habilitative therapy with me. Photo by Ariana

I have found myself wondering and thinking…maybe DDD isn’t getting enough funding in the budget?

Because my son needs this service. All children who qualify for it do. And he has benefited and everyone who interacts with him has benefited from the work I have been able to do with him.

Work that I will no longer be able to do once that funding runs out.

Right now, we’re super lucky that a therapist who has worked previously with our family and really enjoyed working with our family and our son is currently able to start taking over a few of his habilitative hours each week, but I’m still the acting therapist responsible for filling 20 of his approved hours weekly.

And, if we still can’t find somebody other than me to fill his remaining habilitative hours when that funding runs out? I mean…he still qualifies on paper, so I’m still confused as to why can’t we pay the parents if another therapist can’t be found and DDD is getting enough funding to meet member needs under the statutes?

As each of the stakeholders involved is considering and discussing priorities for the upcoming budget, my hope is that there will definitely be funding going forward to continue this service, which helps provide assistance to one of the most vulnerable communities in our state by allowing them the extra support needed to gain skills in self-care or other areas that they might not otherwise gain. Skills gained that benefit us all by reducing care costs going forward, and providing paths for increased participation on all aspects of community life.

Tony learning how to use a piece of playground equipment he’s previously been too scared to try. Photos by Andy, taken during a habilitative therapy session with me, I am providing balance support and using a technique called chaining to break the physical movement components for what he needs to do to successfully use this by himself into smaller parts to make it easier for him to learn.

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Maybe I Still Can’t Always…

Posted on by Ariana
Tony, at his dentist today, where he stayed in the exam chair the entire exam portion of the visit for the first time. Photo by Ariana

Maybe I can’t tell you all the reasons my schedule is bleeding losses of self-care. Maybe I still can’t always get into every medical appointment I need to for myself. I’ve actually made two annual physicals in a row…but I have two other specialists I’m past due for visiting and a mammogram that will happen…sometime? Sometime. At least the lab work came back great…but still.

And… at least not every item crowding my schedule is a crisis or therapy. Last night it was Age of Adaline with Hannah, tonight she and I watched Howl’s Moving Castle. I treasure those moments in a way that anything I say here would be as a summation a paltry injustice, and you know, I chose to slash writing time for this blog to have them, just like I slash schedule time for my own appointments to take care of medically necessary things that come up for my kiddos.

Sometimes balance seems like something I can only dream of, but really I know it is something for which I can genuinely hope. Maybe still it is not always now, but it is coming. Someday.

Hannah came with us, and we stopped together at lots of places after the dentist, where Tony practiced waiting patiently while she shopped. Last two dentist office photos by Hannah, with the last one captioned by her at his only attempt to leave the exam area. He actually seemed to want to explore this time, he wasn’t trying to leave the building. And, Hannah saw the shirt and thought it would be funny for me at one of the stops, so I got it and I will think of that moment and smile every time I wear it 😀
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February Gratitude & Some Viewing/Reading To Consider

Posted on by Ariana
Photo by Ariana

To Emily

At this point, really what more can I add? Thank you for choosing so many times to work for our family, for finding this to be such a happy place to work for you, for all the ways you have consistently shown that you can see all of the best our little man is capable of and help him bring that to life. Beyond words, Thank You.

Some Viewing & Reading To Consider (titles can be clicked on for links)

“Why dieting doesn’t usually work,” Ted talk by Susan Aamadt, Neuroscientist

This is the time of year so many of us dutifully rush to the gym and sternly tell ourselves we are going to clean up our diets…and if that is something you like to do, it is perhaps worth your time listening to this talk. I have noticed for me personally, the more stressed out I am about cutting out calories and loosing weight, the more the calorie restrictions don’t work, and according to Neurosceintist Susan Aamadt, that’s because my brain is freaking out thinking that the famine is coming and lowering my metabolic rate. She also has a book for those of you that want a more detailed accounting for what she’s saying here. I know she says there isn’t much one can do about what the brain determines the set point to be, yet I found myself thinking after I listened to this what the power and benefit would be of combining her approach of mindful eating with spending time each day intentionally thinking thoughts to the body about how there isn’t a famine, the body is going to get everything it needs, and that if excess has been stored, it’s time to clear out the stores because they are doing more harm than good. Thoughts are a powerful thing, and so is the awareness that all of the hanger that comes from dieting may not be doing any good long term.

“Social Security denies disability benefits based on list with jobs from 1977,” as reported by Lisa Rein for the Washington Post

This is something that all of us should be aware of, because we never know if or when we might need to be filing for disability. Using a list of obsolete jobs to determine eligibility is, in my opinion, a concerning practice that needs to be changed.

Two Articles About the Same Situation:

“Parents of child with autism say neighbors in Port Washington are pushing back on fence installed to keep daughter safe,” by Jennifer McLogan for CBS New York

“‘Autism child area’ signs installed after battle over fence in Port Washington,” Eyewitness News, ABC7NY

This is something I feel deeply, because as a mother of a kiddo whose had some more intense behavioral and risk-assessment related challenges, it’s something you feel in the community whether you need to build a fence or not. We show up to a park with Tony in our neighborhood, and despite the fact that he’s never hurt a single kiddo at a park (he’s generally only trying to hurt himself, even if he tries to push through a caregiver to get what he wants, he only uses his shoulder and clearly tries to do it in a way to move them not harm them) and I’m always there to ensure he’s noticing other kiddos, parents almost always clear out their own children quickly upon our arrival. The question I think every community member should ask is “what would I want if it were our family and my child with these needs?”

ACDL and RSK Postion On HB 2460, by Amanda Glass and Christopher Tiffany

This is one that I would like all of my loved ones who live here in Arizona to read and be aware of. As a kiddo with behavioral challenges related to his disabilities, I support the opposition to this bill and hope that those of you who read this and feel similarly and might have some free time could consider writing your representatives with your thoughts as well.

“More children without intellectual disabilities diagnosed with Autism,” by Dennis Thompson for Healthday News

The main thing I would want anyone choosing to read this article to focus on is the portion where it mentions that 2/3 of individuals with autism do not have intellectual disability. I want to quote something Temple Grandin said in her forward for Bernstein’s book Uniquely Normal:

“At another center, I met a non-verbal teenager who was learning to ride. He could not talk, so I decided to assume he had normal intelligence and communicated with gestures. When I pointed at the stall door and made a horizontal hand movement, he immediately closed the sliding door. My assumption was correct: he was intelligent.”

To me, there seems to be a generalized assumption within communities that all individuals with autism are automatically deficient in understanding when the evidence simply doesn’t support that. And for some individuals, like our son, the inability for social connections to provide any motivation to cooperate can mask the amount of understanding they do have. Far too many people think that Tony can’t possible understand what he’s asking for because he’s doing so using a computer (that right now is set to a mix of symbols, image icons, and words), or that it’s not as legitimate a form of expressive communication because it’s not speech. I have literally had people tell me that his use of AAC technology isn’t real communication and doesn’t show understanding of the concepts. Try telling him that if you refuse to give him the very specific items he’s asking for so he decides to go raid the cupboards for that item himself. And people don’t believe our son understands Spanish, for example, until they see it for themselves, and even then, some of them chuckle and think it’s just a coincidence he’s responding appropriately either via behaviors or AAC communication or one of the few verbal words he can produce. You can see the problems, or you can see the potential for the same situations. My hope is that the more of us who share this message, the more everyone in our communities will be able to see the potential and stop focusing entirely on the challenges that may be there.

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“So, How’s He Doing?”

Posted on by Ariana
That’s my kiddo eating a post COVID vaccine celebratory cookie while waiting in his PCP’s lobby to verify a lack of side effects. He ripped the bandaid off right after it was placed. Tank top used to allow quicker access, he was given a medication to help with anxiety prior since needles were involved. All photos by Ariana.

I get asked a lot lately, “so how is Tony doing?”

Well, it’s been a very busy couple of months. We went right from the transition out of services with his former ABA providers (and he was really heartbroken about that) into the holidays where pretty much everybody who works with us wanted to take time off for Thanksgiving, Christmas, and New Years. Which of course, I understand and support- but he doesn’t, as we all know. He got a nasty respiratory infection, an infected sore in his ear, one of his baby teeth fell out and another is hanging on for dear life while the other one grows in on top of it. Not comfortable for him sometimes, and he has let me know that on his speech device. I eliminated one of his two daily walks to start transitioning him to what will be doable for that once he’s in school. We’ve now moved his Tuesday and Thursday therapy appointments this past week to other slots to accommodate the anticipated ABA schedule. And on Tuesday, he got his first dose of the COVID vaccine.

Anybody who knows Tony knows that’s a whole lot for him. But we’ve still been pushing forward and he’s been making a lot of really great progress on some of his goals. The only thing we’ve really put any pause on is functional sitting for extended times while eating in public skills- we’re waiting until the RSV/Flu/COVID wave passes to reduce his likelihood of catching something as this is something we do with him unmasked.

The above pictures are from October, when we started working on functional public eating skills and staying seated after he was done in public locations.

His music therapy team told me a couple of weeks ago that he has been extra flexible the last couple months, and there can be no greater indicator of how far he has come to be given that bit of feedback after everything I described in the paragraphs above. There was a time that even one or two of those things happening would have caused a period of significant rigidity and stalled progress for a few weeks.

But right now, he’s moving along at a good pace on everything that doesn’t involve motor planning. For many of the things we are doing involving communication, he needs a preferred edible reinforcer. He’s given that for correct responses or appropriate behaviors only. We are working on fading use of kindle and TV and replacing them with functional play for reinforcers during in-home sessions and he can tolerate doing that for more than an hour and a half at this point. He’s cooperating with seated trials of non-preferred tasks of 6 minutes (he was at 2 min at the beginning of November). He’s showing increases in crowd tolerance. We’re at him tolerating his clothes during functional tasks for 1 hour 35 minutes during home therapy sessions, and he’ll tolerate a bandaid for as long as an hour (we were at under a minute for this early in the fall). He can keep his jacket on now for the entire hour or longer walk (when we started out at the onset of cooler temps this past fall, he was at 20 seconds). We’re starting to fade his use of the kindle as a reinforcer in preferred public locations also by replacing it with cart pushing, which he can currently do for around half an hour before he gets tired.

This was from today in Ulta, and many times in preferred locations he will come back when asked if he starts to walk off, and is improving a lot in his ability to stay in the area. Here he was walking back towards me after I called out to him because he started to wander away a bit.

Even some of his motor planning goals have seen movement. Just this past week, he’s succeeded on getting his own jacket on three times all by himself. And we’re working on generalizing different jackets to him, sometimes he and I will swap coats or he’ll borrow his dad’s. He got both of those jackets below on by himself!

Ok, yeah, I know. My kid is 10, and many of these things would happen at a much younger age for another child. But they’re still happening, and so we’re going to celebrate it because the happening part is what matters.

We do see, of course, some moments where either his memory or his difficulty in generalizing doesn’t help. A “no” he might tolerate in home will not be tolerated at the zoo or a crowded mall, nor will he have the same level of directional flexibility in those places, so in these kind of situations we have to work on location by location, increasing tolerance and using edible reinforcers that we currently don’t need in the community walks for directional flexibility or denial tolerance. And he doesn’t generalize current behaviors to all locations. Meaning, skills we’ve worked on and he’s doing amazing at in locations we’ve done a lot of work in the past two years- he’s not transferring those to locations he hasn’t been in since the start of the pandemic. He’s wanting to pull that memory file and run it as his current behaviors for those locations, so that is something we are working on location by location also.

Today, Litchfield Park Public Library, where he wanted to run all over the place, pull up the window shades, and generally do what he would have done 3 years ago. Was able to transition him to functional seated tasks, but it took skittles to persuade him.

That can work for people too. His first walk with Miss Emily when she started back up doing some of his habilitation hours a couple of weekends ago, he wanted to revert initially to how community safety walks happened when she was last working with him (and at that time we were at only three direction changes at 20 seconds, which he would then ask to retrace back so he could walk his preferred route). We didn’t see any pushing, but he got upset and leaned into me a couple of times when she started giving him the directional instructions. He verbally fussed and stomped a bit, and we talked about it. Because he wanted everything to be exactly how it used to be when he last worked with her a year ago. And then it just clicked. He walked all over our community with her in ways he’s never done before and it was a beautiful thing.

He did (and a very happy thing it was indeed for me to see) generalize all of his public store locations skills with her.

So, yeah, there’s been a lot going on…but he’s doing great. Thanks to all of you who cared enough to ask <3

Ariana's Posts

The Gift of Listening

Posted on by Ariana
Working on tolerating keeping the jacket on and wearing AAC strap at the same time, he is now tolerating keeping his jacket on for 80% or more of many walks. Today. Photos by Ariana.

I don’t automatically check on therapy programs to verify the use of best practice for Tony the way I do for medications. Therapy programs don’t come with life-threatening interactions or anaphylaxis. I do tend to read a bit about any therapy type he needs because sometimes it can be hard to find providers where we live, waiting lists can be long, and not every provider feels comfortable working with our son. Sometimes I need to be able to step in when a service isn’t available so he doesn’t miss out on what he needs, and certainly I’ve learned a lot because I’ve needed to work with most of his therapists over the years owing to the nature of his challenges and deficits.

I’ve only ever challenged one of Tony’s therapy programs. And I assure you given how difficult it can be to find ABA services where I live, I absolutely wouldn’t have done so without feeling it was absolutely necessary. And my first preference would have been for us to all work together for a different outcome than what happened.

I know someone who was going to school for their NP and related that one of the instructors explained to the class that if they have pediatric patients with rare disorders or conditions, they need to listen to the parents, because most likely they’ve studied a great deal more about the specifics of those disorders than they as providers will have. I love that philosophy. But, that isn’t always what is experienced in real-world circumstances for parents.

I try to be creative with any opportunity I have to expand his ability to handle functional tasks in new environments: here we are practicing tracing different lines and shapes while his sister is being seen by the dentist. Last week.

As a parent, I think any provider should listen to what I say about the clinical history and my current observations about where our son is at and what he’s capable of (y’all, did you know he understands some Spanish and can find our car by himself in the fully-loaded phoenix zoo parking lot? That he can remember where the bathroom is in a store he’s not been to in over 4 years, and only ever visited twice?). But beyond that, there are certain situations I feel like make listening to my input imperative:

1) If a provider needs my help to manage the physical behaviors. If someone can’t handle our son by themselves there’s no judgment for that, but if I am needed to manage physical behaviors then I am part of the active team for that type of therapy (degree or not) and my thoughts should be treated as such.

2) If a provider needs guidance on how to help Tony adjust to working with them.

3) If regressions are happening that shouldn’t be.

If a provider doesn’t need me and progress of any kind is happening, I’m not in their business.

Because I am exhausted.

Because I need a break and often can’t get one.

Because sometimes I feel ripped apart inside by all of everything that’s been going on and I just want to be able to step away for a moment. But no matter how I feel on the inside, if any of our providers have needed my support, I have been there to give and do everything they have needed or asked. Because I’m the mom, and that ball will always be in my court.

We’re currently on two wait-lists and have had multiple rejections when it comes to finding a new ABA provider. Some families in our area of town have waited 2 years before finding a provider who had a placement for them on their schedules. This week, we had an ABA provider express interest in working with our family that may be able to start in 4-5 weeks. We discussed my concerns and observations about what has been effective with him, and I was told the BCBA would be comfortable giving it a shot. And I’m grateful. I felt like they listened to me about what is going on, and when providers do that, it’s a gift to everyone involved.

Ariana's Posts

When Life Teaches You To Verify

Posted on by Ariana
From a hab session this past week, where Tony has made great strides tolerating wearing his AAC via it’s carrying strap (for upwards of an hour), and here we are practicing crowd tolerance by taking part of our route through the kiddos heading home from a local school. All photos by Ariana.

I was 14 when I was finally given a diagnosis for the birth defect on my right foot, and I have had two corrective surgeries on this foot. Many years ago, in my mid 20’s, I had just started seeing a popular, well-respected podiatrist within the healthcare system I worked for. He had started me on Celebrex for some of the pain I was experiencing in my tendon, and my pharmacy filled it without comment or question the first time.

Over the next month, I began feeling increasingly unwell and was having unexplained onsets of respiratory and other symptoms. As I recall, I went to refill the prescription, and the pharmacist on shift that day was flagged over to chat with me. He told me that he had noticed when filling it that I was listed as being allergic to Sulphas, that whoever filled this never should have let me walk out with it the first time, and that it was not recommended for people allergic to Sulphas to take Celebrex because the chemicals are similar enough they can cause reactions.

I immediately stopped taking the medication and the unexplained onset of symptoms resolved over a few days. I made an appointment with that podiatrist. You know, I have a lot of allergies…when my environmental allergens were recently tested, the nurse involved joked that I needed to start wearing a hazmat suit. So, I understand it’s hard for providers to keep all of that list straight and it’s not something I get judgy about. I wasn’t upset, I wasn’t looking for blood, I just needed a different option that was safer for me personally. And, I was genuinely thankful I didn’t have a worse reaction. Some of my medication reactions have been spectacular in a bad way.

When I explained the situation to this podiatrist, he looked at me and said, “I know your body better than you do. You keep taking that medication.” And he was dead serious, which he made clear with his reiterations to continue taking Celebrex when I told him I didn’t think it was in the best interest of my health to do so.

I never went back to him. I had an allergist around the same time he put me on some medications that I certainly didn’t know were contraindicated to be used together and it caused an interaction. This particular allergist, I had picked him because he was listed in Phoenix Mag’s annual list of top doctors, the ones other doctors recommend. And I’m sure he is a great doctor despite what happened.

The past couple of weeks we’ve expanded working on his communication goals in the community, as his safety skills have improved he is now tolerating answering up to three questions per item with reinforcement given for correct answers only, and has begun mastering out those goals at a faster rate than we’ve ever seen happen except for when he learned to ask for food and TV items he wanted (that took 45 minutes the very first day to be fully independent on AAC when he was 3).

After that, I started checking every single medication any doctor prescribes me. Often this doesn’t go over well at first with the providers involved, but I know I have found the kind of provider I want to work with long term when they are able to look past their own feelings of pride in their academic accomplishments and see me as a person, can recognize that I’ve been through a lot and I’m not doing it to be insulting or malicious.

Every single person on planet earth will make a mistake (I’ve certainly made my share) and in health care, those mistakes can kill. Possibly if you’ve had even one of these types of situations happen to you, you might start to adopt a stronger position of advocacy for your own health outcomes.

And, whenever necessary, you’ll do that for your children too in whatever capacity is called for. And it won’t be malicious then either- it will be what you have to do as a parent.