Tony & Ariana, sitting at a picnic bench outside of the school across from out house at sunset, practicing sitting for 4 minutes while labeling. All photos by Ariana
The last habilitation therapist to work in our home was a lovely young woman. I really liked her. She had never worked with the developmentally disabled. Had no educational training, no knowledge of the therapy types or techniques. I trained her myself on Tony’s programs…personally I care more about someone’s ability to be patient and their willingness to truly listen to what the needs of my son are than what kind of experience they have. She ended up deciding after a couple of months that hab wasn’t her journey and quit all of her clients. Sometimes you just don’t know if something is for you until you try it, and I respect that. Often turnover his high in general for hab therapists.
In the state of Arizona, all a person needs to do habilitation therapy is to be above 18, have a CPR/First Aid card, pass an Article 9 class (which loosely goes over what DDD paid therapists are and aren’t allowed to do), and have a level 1 fingerprint clearance card. Only children in the early intensive intervention stage of hab have a BCBA as a clinical supervisor. This stage generally ends at age 5 in Arizona unless an extension is granted- Tony was granted an extension until he was 6, at which point he entered into regular hab therapy and we needed to use the ABA coverage under his behavioral health benefits, which became a separate service then and required an RBT being supervised by the BCBA for that. There isn’t a BCBA / clinical supervisor overseeing habilitation therapy for children of Tony’s age, and there isn’t additional therapy training of any kind that is required for the therapists working with kiddos in his age group either.
Tony works really hard to overcome his fears…he walked right up to that carousel and touched it last time we went through Tanger…He’s scared of carousels and lost some tolerance for them because we haven’t been around them much since the start of the pandemic.
Some of you may be remembering at this point that we recently had a formal statement given to the AHCCCS administration by our former ABA team that because of the success I have had in moving Tony’s progress forward in his community goals as his acting hab therapist that only hab therapy is necessary to meet his needs going forward.
Because we had transferred work of Tony’s community safety goals a couple of years ago into his ABA therapies, to promote consistency I followed their recommendations up until they chose to work on different goals during ABA this past April and I started using different programming for community safety in hab starting in May. If you have been reading with us for a while or you know a bit more about what my day to day life has been like, you doubtless understand that our family has desperately needed the results we have since obtained. I have worked hard. Tony has worked hard. I have been grateful for what we have accomplished.
I so rarely get to escape the confines of the therapy schedule that I really resonated with this sculpture while I was waiting for my sister outside of the Phoenix Art Museum today. Sometimes I feel like the fierce mother trying everything she can to power through the challenges in our circumstances , and sometimes I feel like the caged creature, looking out at others who get to come and go as they please in a much more expanded manner….
But, as we’ve mentioned previously, I’ve been getting a hands on education in a lot of different therapy types for the past 9 years now…because that’s how long we’ve been doing therapy with our son. And, I’ve read a whole lot of stuff on different therapy types and techniques. And, I have been using strictly ABA with Tony as if I were a BCBA writing and overseeing the programs the way I would want to see them be run since May.
I’m not a BCBA, I’m a mom trying to do the best I can in a situation that often feels more like drowning than living.
Tony from our walk before lunch, where he was just told we were going for a short walk without any sort of landmark being chosen. He’s tolerating all of that and will make any directional change I ask him to without reinforcers right now.
In my opinion, no matter how much I like someone, there is literally no way a person who has no experience with the developmentally disabled nor any training in therapy methods can come in and work with Tony without some rather extensive guidance and produce the kind of outcome I did from May to now.
As his mom, it is my job to always advocate for what is in his best interest. Because he still meets medical necessity for ABA, we’re doing what we can to find a new team for that, but wait lists for that type of service are generally long on our end of town…so he’ll likely be without that type of service for a while. Lucky for our son and lucky for everyone paying for my work in hab then that I’ve been paying attention and learning from every therapist around me all of these years.
And so, I want to thank each and every therapist we’ve ever worked with for sharing those bits and pieces of what they know and do with me. I couldn’t be doing this without what I have learned from each and every one of you.
We believe in serving up something honest too, so we love that about you, Culvers! From a therapy outing this past Wednesday, all photos by Ariana
Our son has what is considered to be severe Autism. Some people think that means he can’t love people, or that he doesn’t pick up on things they do and certainly that he doesn’t grasp any of the implications.
He has always loved, always bonded with others. And I have never seen him bond with someone he felt like was faking their acceptance of or comfort with him. He’s doesn’t historically respond well to fake, though right now he’s just more likely to ignore a person he’s decided is being that way. Because our son’s Autism was regressive, I got to experience smile after smile from Tony as a baby, with him constantly beaming up at me, eyes aglow. Every social worker and person connected with his case documented the obvious nature of his close bond and attachment to me. Even as a baby, he looked at me and he could recognize what I gave him: love, acceptance- unconditional.
Just a reminder, even though my son might not always test so well, Dr. Hunt’s assessment was that he likely only has mild intellectual disability based on his observations. An impression which may have been formed in part because he was able to observe Tony for years outside of a testing environment…though we were never in the same social circle, we did used to go to the same church. And if you want to know what my son is truly capable of, you need to pay attention to what he’s doing when he thinks you’re not paying attention to him or expecting anything from him.
On the other hand, he won’t bond with everybody. I have also seen him change his feelings about other people after certain things were done. And for people he does feel an affection for, he doesn’t feel equally about them…some people he clearly loves much more strongly about than others.
Tony & I practicing sitting and waiting in the community today, threw this one in here because the universe needs a picture of me with lipstick on one of my teeth and showing how my sensitivity to light can make me squint enough to show every line on my face….plus the swelling that happened on my eyelids about 15 minutes after lunch, gotta love Mast Cell Activation Syndrome 😀
I have seen him work with some therapists for a year or more and not have any sort of reaction to their absence in his life- no negative behaviors, no changes in cooperation with others, nothing. But, when he looses a therapist he loves, that once upon a time was a very different story.
When Whitney moved out of state, he struggled with reduced cooperation with everybody in his life (including me) and dramatically increased self-harming for a month. When the organization that was supervising two of his favorite therapists wanted them to work with other clients at the start of the pandemic because, as per a conversation with a representative of that company at the time, our husband’s job was in healthcare and they considered us to be a greater risk to their staff than their other clients, we were told this without any time to prepare him before the therapists involved stopped coming in. He didn’t increase self-harming, but he was so emotional about it that he had several full on bathroom related accidents the first few days.
We were so grateful those therapists themselves wanted to continue working with our family and that the organization was willing to work with us and them to get them back to doing therapy with our little man after a period of time. By the time Emily came and went the next two times, he didn’t have any bathroom accidents, self-harming was barely increased, but we did see some decreases in cooperation with all of his therapists. Over the past three years, our little man has truly been working hard to become the King of the Changes I promised him he could learn to be.
Practicing wearing his jacket today for skittles, he doesn’t like jackets and doesn’t feel cold the same way many people do.
One of the behavioral technicians that was part of the now former ABA team I am quite certain he loved her more than he loved his grandmother. I know that might be hard for some in our family to hear, but for him he doesn’t decide how much he loves someone based on a family relationship. When it was explained to him this transition was going to happen, he clutched his father’s shoulders and sobbed for several minutes. We have seen the mildest of upticks in self-harming, to the tune of maybe 5-10 seconds worth a few times a week since that day… thankfully, it’s been nothing dramatic and that has been consistent with what we’ve seen when he experiences an emotional loss over the past couple of years. But certainly, understanding his feelings as much as I can based on what he has been willing and able to communicate via his speech device about this matter, I have had to make some adaptations to how I run his therapy programs to support him as we continue rolling the progress onward and upward.
If I’m going to go any place with a small crowd, I might do what I did today and choose OrangeLeaf, a place he’s familiar with and which offers him something he finds personally rewarding to get there. Both tables behind us were filled to the max with noisy, giggling kiddos- we had to sit at the bar today. I will plan walking routes so that we are within easy distance of a bathroom. When he’s struggling with joint attention, and he has been struggling more since we entered this transition period, I will hand him items I am asking him to communicate or having him touch them and look at them (sometimes I’m going to need to point the item out to him multiple times before he will focus and answer right now). If he asks for something back that we are working on relinquishing, such as his kindle at a place we’re eating and practicing sitting at, I’m giving it to him.
Here, he is shown just after giving his dad the smallest french fry in the stack and laughing about it when his father asked if he could have one on Wednesday. He was given the kindle back because he asked for it on AAC, and typically right now we’re fading its use while he’s eating at restaurants.
In the past, we had to pull back on tasks he found more upsetting. We don’t have to do that anymore. We’re still giving denials and he’s tolerating them from me. Directional flexibility is soon to be mastered out on neighborhood walks, as he is now calmly tolerating walks with me without using any landmark pictures and responding to all directional instructions without reinforcement. For communication tasks, I am giving him skittles for every correct answer to maintain a desire to respond. And I am continuing to actively advance all of his goals. But, we might skip something like the zoo for a couple of weeks that really pushes the boundaries of what he feels comfortable with.
What’s love got to do with it? Sometimes everything…and thankfully sometimes, nothing at all.
Tony reaching down to feel the water from sprinklers on our walk earlier this afternoon…we are working on things like having him determine and answer if cars are driving on streets we need to cross, etc as his directional flexibility and safety skills cooperation has improved.
Ariana & Tony, Nov 5, practicing sitting and waiting for 3 minutes in an area of the community his never been willing to walk into before, photos by Ariana
I’m going to start this off by asking that my loved ones who recognize the situation below make no comment. I will not be giving any identifying information because my aim is to educate and nothing more, and I will definitely strike down any public comment that doesn’t honor the spirit of that.
Once upon a time- when doesn’t matter here- I objected to a therapy program being used with our son. We were seeing behavioral regressions that in my opinion were directly related to the programming being used. Please be aware that opinions on either side are not facts nor am I presenting them as such. The official position from the provider involved is that they cannot say what was causing the regressions but they believe wholeheartedly in the programming. I can truly say that I do believe them to be very sincere in their belief in the ability of this programming to benefit our son when they recommended trying it. And I will also add that I don’t personally challenge programming without a sincere belief that a change needs to be made to ensure our son’s progress.
When I challenged the programming after behavioral regressions of a very concerning nature started to appear, my recollection from a meeting to discuss the matter was that initially I was told there would be no modifications and that if I wanted something different I could go somewhere else. I brought in outside agencies because it was our son’s desire at that time to continue working with the provider, and the provider involved was willing to negotiate some changes at that point, but then added the following condition:
Any provider who has ever worked with our son knows that more than 5 days in a row of stalled progress are common before he will pick back up and resume an upward trend. Not only is motor planning an issue for him, sometimes if he’s very upset about something he’ll just stop cooperating with therapy tasks for a period of time. In the opinion of our family (and again, opinions are not facts), it was a condition which seemed designed to force him out of services with that provider.
What does a condition like that do to any trust the family might have? How would the individuals involved feel if they were on the receiving end, and more importantly, would they have wanted to see the same thing happening for them or their child?
The truth of the matter is I have darker things than this I could put up screenshots for. And certainly I have had providers who we sought to receive care from look at Tony’s level of functioning or his behavioral challenges and decline the case. How all of that emotionally feels is, honestly, it’s pretty rough sometimes. But as I have been listening to the beautiful sentiments of Laura Pausini lately in her song “En Cambio No,” what I would prefer to focus on is just how thankful I am for the providers who have stood by us and with us, who have looked at my son and seen that he has good things to offer the people around him. In my opinion when somebody does something like that, they are not going to see me, my perspective, or my needs anyway no matter how many screenshots I put up before the world, and in my opinion they aren’t showing that they care about the true needs of our son or our family.
Some of our Halloween night prep, which was directed towards giving him practice handling elements that might be more visually overwhelming at times with fewer people, such as waiting outside of those houses during walks, and times with more people such as trips into Spirit Halloween. We didn’t practice the communication components beforehand because when something is guaranteed to get Tony something he wants, he typically only needs to be shown the communication sequence one time before he will start using it independently.
Everybody is a person here. Any provider can refuse to be involved and I respect that. And if you are a parent just starting on this journey with an individual deemed lower functioning, it’s probably the last thing you want to hear because you might be feeling desperate for help. I get it because I have felt that way too. But still you need to understand this could be what your journey looks like, because you may have no choice but to do what I have done and spend a lot of time educating yourself about different therapy techniques so that you can step in to fill any gaps and help your child reach towards the potential within them.
I can’t give you easy answers for some of the emotional things you might be feeling on this journey, but I can maybe give you some guidance to cover up some of the physical stuff that might be going on. This was from yesterday, when our son was running into the bathroom during PT and he closed the door forcefully while running into the bathroom and I didn’t get out of the way quick enough. So for covering a bruise that is forming and as it develops, the important thing to remember is opposites on the color wheel. In this case, the line from the door was mostly red yesterday with small amounts of purple. So, pic number one is before makeup, pic two is after I have dabbed on some light green and yellow toned green powders over my foundation primer, three is the finished makeup in full sun so you can see the end result. After the primer picture, I did one more application of the powder mixed in with some foundation, covered it with straight foundation, and then set with powder. If you are using a cream product or mixing your own as I dd, you want to set with a translucent powder before applying your final foundation product. Please note, I did not color correct for my veins in my temple, I like to have a foundation look that doesn’t look like as much coverage as it actually is.
Tony and Ariana out Trick or Treating, October 31, 2022. Photos by Ariana
A Few Bits of Gratitude
I started off this week feeling so grateful that Tony recovered enough from a recent viral illness to go Trick or Treating this Halloween. He hasn’t been since he was six and hasn’t really expressed any interest in ever going again. Generally, he doesn’t like costumes, and for candies, really only skittles and dum dums hold any appeal for him. However, I decided I would like to use this as an opportunity to help him build tolerance of crowds (especially groups of other children) since our neighborhood is an area of the community he already has a high degree of comfort in. Since he doesn’t really feel motivated by most of what is handed out, I had to sell it to him that it would make his sister really happy if he gave her all of the candies he didn’t want.
I am grateful he liked that idea, which became his motivation with putting up with everything else that went with it: the people, the noises, the decorations, the communication expectations. And I am so grateful that he has a loving sister, who on her own, without being asked, looked for skittles while she was out Trick or Treating with her boyfriend so that she could give them to her brother…so they did a swap and both of them ended up with more of what they wanted than they otherwise would have had.
I wasn’t sure what we were going to encounter from our neighbors because he is usually the only kiddo we see out and about in our community using a speech device, but nobody said or did anything to him that would have caused Tony to think they thought anything unusual about it, and I was extremely thankful for that. He’d only been shown the new Trick or Treat button on his AAC device shortly before we left and given one opportunity to practice it with me, but he used it appropriately on his own at most houses we stopped out. I remain filled with joy about how well things went- I know some of you already got texts and heard all about it, but he did amazing.
Before I close out my thoughts on what I have been grateful for lately, I would like to express a note of the deepest appreciation to the fabulous Miss Whitney, who many years ago, when I started painting Tony’s Halloween shirts (he can’t tolerate the costumes for sensory reasons), recommended that we at some point use the Mike Wazowski eye. Took us a while to get there, and I totally gave up painting them myself a long time ago and just bought the shirt he wore this year from Redbubble, but I have always loved the idea and am grateful to her for sharing it with us <3
This is an article I think is important for each of us to read and consider the ramifications for what it is like to be on all sides of this discussion (you can click on the title above for a link). Further, I would also add that these kinds of experiences are not limited to doctor’s offices, but that families of disabled loved ones can experience the same types of things from therapy providers. I know I have. Each of us are human beings, and for the vast majority of us, that means that, even if we were not born requiring any sort of support or assistance above the usual, at some point we all face an increasing likelihood the older we get of experiencing a more permanent condition that might require extensive medical or therapeutic support. Accidents, strokes, cancer, etc…life often happens in all sorts of altering ways.
What would we want to have happen to us personally? And perhaps you are not currently a parent, but what if one of your future children ends up having deficits and needs similar to my sons or if a beloved child of another family member does? What would you want for them to experience? If you are a provider, is the experience you would personally want the one that you are giving your clients and patients? And, what kinds of changes or supports should we as a society be advocating for so that it was easier for medical providers to feel comfortable treating individuals with disability? Because some day, if it’s not already now, it is likely to be you, it is likely to be me, it is likely to be someone we know and love deeply…and while certainly I would hope this wouldn’t be the case, we too may come to find when it’s our turn, that we sometimes or even often struggle to find the support our condition requires.
A Matter of Temptation, by Stacy Reid
So, I have to start this off by giving a cleanliness disclaimer. For my loved ones who have more conservative religious views, the level of detail that is given to describing acts of intimacy in this book is such that out of respect to your own personal views on those matters, I cannot recommend this book for you, personally. However, I do have a reason for discussing this book here and I welcome you to at least consider my ramblings on that.
So, in a nutshell, this is a romance between a gloriously gorgeous young woman (Mina) with an incredibly damaged reputation and a handsome as hell, ridiculously rich, and socially admired Earl (Simon). Who, while the author never flat out states as such, clearly is meant to be somewhere on the spectrum based on her descriptions. I present just a couple quotes to substantiate this:
“There was a part of him that had felt removed from the world and its idiosyncrasies even apart from emotion.”
“She jolted, her eyes widening, and it sunk into his bones then that he had never used such words with her before. Not in all the years she had tried to cuddle him close as a lad, or even as a youth when she spoke words of affections to him. He had always shied away for he was not an emotional boy, and he had never returned her grandmotherly sentiments. ‘Before I met Miss Crawford, love was simply a word. Now I understand what the word conveys…’ ”
There’s more of this type of narrating sprinkled throughout the book. So these are stereotypes that I think many of us can recognize at this point. This is a grown man saying he’s never felt love before, and perhaps that may be the experience for someone, somewhere out there on the spectrum. While I do certainly think it’s pretty awesome to have someone who is seemingly Autistic cast as a romantic lead, I will tell you honestly that I don’t know a single Autistic individual who doesn’t love, doesn’t feel emotions- and I only know one personally who I would say might struggle to develop bonds of that nature. Multiple generations have demonstrated that Autism is an inheritable trait on my mother’s side of the family tree, so if you are reading this and you don’t know me personally, that informs my opinion on this. So, I personally would have preferred a more nuanced approach to that within the narrative for starters.
Now, I prefer to keep my blog mostly G, so I’m not going into details about this next topic. But according to a study linked here, “Over 96% of children with ASD report hyper and hypo-sensitivities in multiple domains.” And those children grow into adults who still have some sensory differences. As that is such a strong finding, while I know romance authors are here to sell the fantasy, I would have hoped that at least some of that reality would make it in there also. Perhaps Simon wouldn’t have wanted to be kissed right over his ear because he would find the sound painful, something like that. There’s lots of different ways sensory differences could impact intimacy.
Overall, this was a cute book. I enjoyed the overall writing, I felt she didn’t rely on a commonly used conflict trope (Jane Eyre has a somewhat related obstacle, but there are some definite differences in what this author does to frame that barrier to a relationship of respectability) and I loved that the author didn’t insist on officially diagnosing him within the narrative. I really do think we all should just be looking at one another as fellow humans, each with certain strengths, each with certain weaknesses, each with certain needs. However, since she relied so heavily on a recognizable stereotype, she may as well have formally narrated a diagnosis. And ultimately that’s why I would recommend reading this. Words and stories have power. Sometime it’s good to romanticize something, but perhaps it’s even better to normalize things as they really are.
Trust me, I know. When I talk about makeup, it’s off topic. Most people who visit my blog don’t come here to read about my makeup, what I do, how I do it, or why I do it. But sometimes we still talk about it anyways.
Because sometimes, the more constructive words that I would want to spill out of me about everything that is going on here (especially for the very nonconstructive happenings that are so much harder to frame that way in any manner) are cumbered with darker emotions, feelings of pain, betrayal, abandonment, and a whole bunch of other very human, very natural under the circumstances feelings. So I talk about random things until I can keep things strictly about the facts and not about my feelings. Today friends, I am not going to lie. I’m not feeling constructive.
So, we’re going to talk about makeup. Because even when I feel like a black hole wants to form on the inside, I try to bring some light and balance into my world by doing things I normally enjoy, like playing piano or doing my makeup. Really the depth of what I have felt this past month has blocked the light of even vibrant colors and glitters from reaching my soul, but I know someday all of this will if I keep at it, so I still grab my brushes and palettes each day and go through the motions. Some days it’s simple, some days it’s not. Some days it’s well blended, some days it’s not. But it’s me and part of how I cope, and this is some of what I’ve been doing in even the moments that have felt darker this past month.
Tony listening to someone using the hand dryers while sitting on a bench across the lobby from the bathroom at the White Tank library, photo by Hannah
When considering what will be the most successful way to increase Tony’s ability to tolerate or be successful in certain environments whether it be with crowds or for structured activities, I have to focus on multiple elements that need to be addressed at the same time. One of the things I have noticed in the past months is that our little man has regressed in his tolerance for the noise of hand dryers in bathrooms, as he overall has had a reduced exposure to a variety of places with them over the course of the pandemic. He cannot, if you are new here, tolerate the feel of sound cancelling headphones on his head. So the first thing I have needed to plan for on all outings is how we are going to help him regain those skills and provide workarounds that respect his comfort level in the meantime. Again, these represent my chosen strategies, the outgoing ABA team has not been participating in discussions for or doing the work arounds for these challenges.
When we first started trying to get Tony to use public toilets after he was successful in transitioning out of diapers in the home setting, we used french fries to reinforce and earn his cooperation for entering into bathrooms he was afraid of. Reinforcement was eliminated as soon as he was comfortable entering in and using those bathrooms on his own. I noticed when we took a hiking trip up north a couple of months ago while we were in the McDonalds there that french fries were not sufficient at this time in helping motivate him to enter a bathroom with hand dryers in a crowded area, so new strategies would need to be developed.
The first and most obvious one is to take him somewhere less crowded. As we have started to reintroduce therapy goals aimed at recouping his tolerance of crowds, one of the things I have been choosing to do is stop at a bathroom I know he will be more comfortable with closer to the location we will be working in. Next, I identify what bathrooms if any he could be more comfortable using within an environment.
Doesn’t look crowded in this picture, but there were still far more people at the zoo last week than Tony is comfortable with when it comes to entering a bathroom. But going to parts of the zoo with fewer people present helps him be successful using the bathroom in that environment. Photo by Ariana
I already know that when we work in the zoo, for example, that the bathrooms by the entrance often have far too many people for his preference in that area and he won’t approach or enter them at this time. But the bathroom at the very back as one is approaching the camels often has very few people near it, so the strategy I settle on for zoo trips for the time being is stopping at a QT near the zoo, then working our way to the back as quickly as possible. Even on days that are less crowded by the standards of others, it is still enough people to make him anxious right now.
For outings to Tanger, during crowded times we had to start out taking him off premises when he needed to use the bathroom, such as the local Carl’s Junior. Andy and I located a family bathroom in one of the restroom corridors at Tanger and offered him a cookie to enter in during a visit with fewer people. A picture was taken to show him when he gets scared by more people being present, so that he can be reminded that there will be a bathroom in the hall where he can go without the hand dryer being on. And he is offered some form of reinforcement for going into any restroom he is initially hesitant to, and given the item if he is successful. For Arrowhead, generally the department store bathrooms are less crowded so that is where his comfort level and willingness to enter one for reinforcement align.
Family bathroom, Tanger, picture to be used if he needs a reminder when scared. Photo by Ariana
In places where there are loud hand dryers and no other options, a member of the group will go in and verify whether or not there are people in the bathroom. Once the bathroom is empty, Tony and I will run in, he’ll be allowed to verify that nobody is in there, and given reinforcement for using the bathroom. Because he’s that scared of the hand dryers right now, he’ll often choose to want to leave immediately when finished if someone else enters, rather than staying and washing his hands, so we respect that and give him some hand sanitizer outside the door.
We will wait outside of bathrooms with hand dryers going off as he is comfortable to help him adjust to the sounds, but nothing here is forced. If another member of the group needs to use the bathroom, and he’s too scared to enter, we will find a bench nearby where he feels safe and either Andy or I will wait with him, offering him variable reinforcement for staying in the area. As he regains comfort with the noises and the crowds, we will still need reinforcers for a while to get him to enter into crowded bathrooms with hand dryers, but we will work to fade reinforcement as quickly as his comfort level allows so that he doesn’t come to consider them an essential part of his routine.
Tony waiting on a bench watching his kindle while his father uses the bathroom, I’m standing off to the side waiting to provide support if needed, Photo by Hannah
As we go forward, we have learned this past week that our very good friend, the fabulous Miss Emily, will be returning soon for a time to do some hab work with us on the weekends, which will help maintain Tony’s ability to generalize to others. I’m super excited and grateful about this because she and I have always worked well together, she listens to my feedback and I certainly listen to hers, and her background with Tony (as both a music and hab therapist), and as a teacher in the public school system, will certainly benefit our ability to be successful with what we are trying to do. Any strategies that come from her as we are discussing anything we are working on together will be designated as such, anything that comes from me likewise.
Tony, laughing and enjoying swinging at a new landmark we’ve incorporated into our community walks, all photos by Ariana
This past May, I started creating my own programming for Tony’s community safety and public therapy goals as his habilitative therapist. This was necessary as his ABA team had recommended working on a completely home-based program and public outings with their therapists were limited at their request. Yet, our ongoing need as a family for progress in that area was still considerable. At that point in time, we had very limited directional flexibility with him on the streets of our community, where he would only tolerate walking for 20 seconds in a direction that was asked for by someone else before insisting he get to walk back and go exactly where he wanted. Denials were met with behaviors that could include tantrums, extensive pushing, and attempts to harm himself.
I was still using ABA with what I did, but I switched to differential reinforcement (where he was only given a reward or reinforcer for appropriate behavior), his father went along until pushing in this setting was extinguished to provide a parental imposed consequence of loosing kindle privileges for 2 minutes once we got home when he pushed, and I advanced his goals as soon as he had reached 80% mastery for two days in a row on each targeted area. Advancing his goals that quickly prevented him from becoming rigid about any particular expectation, and I discussed any upcoming changes with Tony in advance so he would have time to adjust to them. Understanding that he still requires tangible in the moment reinforcement is important to gaining his cooperation…he understands what the expectations are, but right now unless someone can offer him something he wants more than saying “no” to what they want from him, he’s not going to produce the desired behaviors.
Tony asking for more time at a different park, then giving me a “You’re totally saying yes, right?” look….
Now, he’ll walk calmly anywhere I ask him to in this neighborhood with me and he’ll do the same for others. We’re down to reinforcing only one directional change per walk, sometimes the entire route is changed. He’s tolerating denials for high value items. Truly these have been wonderful changes to experience for our family. Because the safety portion is so improved, I’ve begun targeting functional living skills, scanning, and conversational communication goals outside of him requesting what he wants within the community and in preferred public locations.
Pushing and steering carts….unloading at the checkouts….
Truly, there can be no greater compliment than having a therapy provider recommend to an insurance company that since the parent has produced such significant progress as the hab therapist, further therapy supports in a particular area may no longer be needed. I have been in a somewhat unique position where my assistance has been required by his therapists for years because of safety concerns around working with our son…so it’s been a great hands on educational experience for more than 8 years now, learning enough to be given a degree without actually earning one. That coupled with the reading I have done allows me to be effective in this capacity. Yet, the therapy system was not designed for parents to be their own therapy providers, and I have only been filling this role because we are unable to find a habilitative therapist in our area to work with our little man.
What we currently see on the community safety routes will not translate to other environments because that is not how things work for our little man, who does not generalize a skill learned in one setting with only one individual to another of either. And for an individual with profound sensory differences in general I would say that is also to be expected, that responses in the home could be radically different to reactions within the community. Environments where greater levels of structure are required, environments with crowds, that sort of thing are still areas where we are going to have to help him build flexibility and cooperation with safety skills while maintaining appropriate behavior.
Tony at the Phoenix Zoo yesterday, his first time back since the start of the pandemic, where we observed decreased tolerance for crowds, especially fear of larger groups of noisy children.
As both a parent and a person currently acting as one of his therapists, I talked with his father about what sort of goals we can work on next to help Tony succeed in other environments. Certainly I know all of his therapy history, how he responds to things, and what his needs are, but it is always wise to get another perspective and honor the limits of the person who has to do the physical managing of behaviors if necessary in environments he still struggles with when I am clocked in.
We discussed and agreed that our next steps include seeking an in-clinic ABA provider as an important bridge to help our son complete school readiness. Andy recommended increasing his tolerance of sitting first through preferred activities like eating in fast-food restaurants (I suggested that we start fading use of kindle in that environment also since the activity is so preferred and has lower functional demands). I felt that we definitely need to start rebuilding his tolerance of crowds (much of that was lost during the pandemic), and that we need to start transitioning him to doing seated functional tasks in environments like libraries, that more closely resemble schools.
Sitting longer periods with Kindle……kindle being faded 🙂
This is going to be an emotional time of transition for our son, but work on some of the above items has already begun and I’ll be discussing more of the process and progress for those goals in upcoming weeks. We remain grateful for the positive things so many people have contributed to the journey he and we are on. At the end of each and every day, his well-being, the well-being of those who continue to work with us, and the well-being of our family remain my top priorities.
We’re also stopping to practice sitting watching events in the community. Here he made it about 2 minutes of a little league game, I love this picture because he was making the “Whooo” sound that we both love from Lizzo’s “About Damn Time!”
Me, a few minutes ago…yeah, I know that foundation is breaking apart between my eyebrows, but we did a walk a few hours ago in 80+ degree temps, so…really, it’s not as bad as it could be. Photo by Ariana
Happy Friday everybody! 😀 So, right now, we’ve got some things going on in our lives that require a heavier amount of direct support from me. And, I can either write my posts or do my makeup. You can see above what my choice was for today. I will be taking the next month off from posting to provide my family with the support that they need, and I will hopefully catch up with each of you soon. Much love <3 Ari
Tony and RBT M’s elbow this morning on our community safety walk, all photos by Ariana
For a few months now most of Tony’s community safety walks have been handled entirely by me acting as his habilitative therapist. Using differential reinforcement and a parental enforced consequence for pushing (the non clocked in parent would tell Tony that any pushing would result in him loosing kindle privileges for 2 minutes when we got home) pushing has been entirely eliminated for walks with me over the past two months. Some walks we are changing up to 100% of the route with a combination of changes. We are also making novel route combinations where we splice together multiple routes, and we are starting to give denials for higher value items to Tony. As his more concerning behaviors have continued to decrease on these walks and his tolerance for changes has increased, I have also dramatically faded reinforcement for directional changes to where only two reinforcers are being given for this randomly per walk.
Today was our first opportunity in nearly 4 months to do a community safety walk overlap with RBT M (where I am accompanying as the parental support and not being paid as a therapist), one of Tony’s ABA RBT’s. We have done three overlapping walks with Casandra in the last couple of weeks, and while Tony has generalized cooperation with the level of changes he will make for me and the same level of behavior reduction with her, I wasn’t sure if he would do the same for RBT M, with whom he has worked for slightly less than a year.
By and large he did.
We changed 95% of the route. He was given two denials, one of medium value (where he was told we couldn’t continue walking after he asked to do so) and one of high value. He tried to push through me on the medium value denial, but calmly accepted when RBT M told him he couldn’t walk around a certain park he likes to walk around twice on both directions for this route. Six months ago, a denial for that would have resulted in multiple minutes of sustained pushing and screaming. No pushing, no fuss- literally my heart sings. He tried to run off on the first change RBT M asked him to do after the first denial he was given where he was told we had to turn around and walk home…but other than that he cooperated with her fully and only two changes were randomly reinforced.
Me trying to get a picture of him and I both…he kept trying to move out of the frame, and gave a verbal yeah that he was trying to do that, but then he decided he’d just go for sticking out his tongue. Truly it is a joy to have more of these light hearted moments with him on these walks.
Because for the last two months when I walk with him there hasn’t been any pushing, sometimes I will put an earbud into one ear only so that I can listen to music on our walks. This has become a way I help nurture myself along this journey. Some of my music choices might not be yours…I like a lot of things. But, these are some of my favorite albums or songs that I have been listening to on these walks the last few months:
Ghost’s Impera…while I like the whole album, “Darkness at the heart of My Love” is my favorite song from the album. A note to my religious friends, this band will upset you…but I find their message resonates with me, as a person who has a less comfortable relationship with organized religion.
Doja Cat’s Planet Her…I love this album, but I literally can’t sing some of these songs out loud because of a certain word usage.
Motionless in White, Scoring the End of the World…but “Masterpiece” is my favorite song off of this one.
Sometimes I just pick a band (like Def Leppard, Pale Waves, 5 Seconds of Summer, Thirty Seconds to Mars, etc) or a song I really like and let Spotify’s algorithm just run with it and surprise me. I was listening to Spotify’s auto generated Def Leppard mix the other night, and it threw in Billy Squire’s “The Stroke” and it just made my night, because I haven’t thought of that song in a while but I totally love it! Some songs lately I’ve been liking to start off with are Latto’s “Big Energy” (the Mariah re-mix because definitely her inclusion in that makes it even better), Stela Cole’s “I Shot Cupid” or “No Man’s Land,” Selena Gomez’s “Wolves,” Sia’s “Unstoppable,” Pitbull’s “Give Me Everything” (don’t judge!), and Eminem and Rihanna’s “Love the Way You Lie.” … and I could go on but I need to wrap this up.
I do know. I’m musically all over the place when it comes to my tastes, but I like what I like and sometimes while my heart may be singing about the progress, it helps my soul to take a few deep breaths that I can listen to someone else sing for a bit on some of these walks now.
Tony and I waiting in line at Ulta to purchase things for his sister a couple hours ago, picture taken just two minutes before he started self-harming in front of the cashier because he was overwhelmed by the number of people there. All photos by Ariana
Because of the nature of what we do when we are working therapeutically with Tony in public, more attention grabbing behaviors from him can and will happen still…even if we are currently on an upward slope of considerable improvement. We are sometimes really pushing the boundaries of what he can tolerate. In stores right now, we’re rarely seeing self-harming, but if a location is more crowded than usual – and it’s already one of his less preferred stores for sensory reasons- we can still see that happen.
I often talk about the stores we work with Tony in because they have handled our presence with grace. They have seen our little man sometimes at his worst and most dramatic, and they have not once barred the doors. Even as things are often so much better that we aren’t really gaining much (if any) attention, because we still could, I always make sure I plan to visit stores where I will purchase things I would want or will use. Businesses that show us some loving deserve to keep us as customers and so they do. Sometimes we shop more for another member of the family (today’s Ulta visit was to replenish Hannah’s makeup kit) and sometimes I just splurge on something that I hope to enjoy (that’s how I ended up purchasing and reading Malice, it was on the 50% off table at Barnes & Noble a few months ago, but ended up loving the writing so much I paid full price for the sequel). The picture with this paragraph is of some of the books I got myself between last week and this week when we made our way through that location.
Some of the products I purchased for our home and my own self-care today…
Sometimes it still takes a lot from me physically, the work we do in public. Today was the first time in approximately 3 years that we’ve stepped into a Bath and Body Works with Tony. The fragrance fumes are a lot for him, and visually this is a very overwhelming store. The line was intense…fifteen minutes worth of waiting. And to keep him calm and happy, I would lift his 126 pound cute self up and squeeze him tight. He would giggle, and immediately ask for more. I’m already feeling it…as I said, we were in that line for 15 minutes and I was lifting him enough so that his head went several inches above mine. So, now I’m going to go make myself some pumpkin and chia seed cream of wheat and spend a few minutes reading one of these books so that I can feel just a bit replenished before we head out and do a community safety overlap with Casandra.
