Ariana's Posts

What Comes Next? Cleaning For Sure…

Posted on by Ariana
Community Safety by ourselves, March 25, 2020. Photo by Ariana

Well, Hannah and I have just finished watching another episode of Father Brown. We both like mysteries, though I am pretty certain after the first three episodes that Lady Felicia must have PTSD hiding behind her upper-crust gentility with as many murders as she happens upon. And, no, that is not all I’ve been doing the past week. But, perhaps I wish it was.

I start this post unsure what I plan on writing each week for the next month or two. Do I take the next couple of months off to focus on providing support to my family? I have many, many hours of direct therapy I will be providing to Tony by myself that I need to plan. Hannah and Andy also need my love and support. And, I have my own health I need to be taking care of in all of this.

Still working on moving forward. Community Safety, March 26, 2020. Photo by Ariana

Do I switch to content that focuses on something more light-hearted? We have been slightly short on those experiences the last few years…but I suppose I could dredge some things up. They might just be incredibly off topic. Heaven knows though, nobody needs to read about a reality any gloomier for me or anybody else then it already has been. The world doesn’t need me to add fragments of internal darkness to the discourse right now. Though, someday, I certainly may choose to go there when it comes to this period of time in our life. Do I talk strictly about what I am doing to help work with Tony under our current therapeutic conditions? I just don’t know. I don’t have an answer for you yet.

So, maybe next week you’ll show up here and read something…and maybe you will not. I am deciding some things day by day right now.

That being said, my heart is with the families of everyone impacted by the ongoing COVID 19 pandemic, and with everyone who is grieving a loss. So much has made it into the news about the importance of sheltering at home for those who are more vulnerable to serious illness with this virus. And because I have loved ones that could be considered at risk, I want to make sure each of you are clear that no amount of staying at home will be sufficient unless you have a solid infection control plan.

Washing your hands often is a good place to start, but it’s not enough. Have you scrubbed down the faucet handles with disinfectant? The light switches? The door handles? Are you spraying boxes delivered to you with disinfectant? Are you wiping down the things you purchase, or that comes in those boxes? Anybody who packs your things or delivers them can give you an invisible present right now since this virus can live up to 3 days on some surfaces.

In our home, I have a fairly aggressive infection control strategy in motion that includes a great many more steps than that, but as we have already stated, my husband works in healthcare and that’s how we roll. His work shoes don’t come in the house until they’ve sat in disinfectant. Bedding is getting washed daily. Bath towels are single use. Counters cleansed, surfaces disinfected…the amount of laundry and cleaning alone may write my blog for me next month.

The truth is, that stuff is warpaint! Selfie, March 25, 2020

And after all is said and done with this, do what you can not to touch your face. I have been consistently wearing make up pretty much every day since the beginning of January. Not because I’m especially vain, though I can be sometimes, I suppose. But because at nearly 44, I wear a dewy foundation for more “mature” skin. You don’t want to touch this stuff or it gets a bit messy…and so I don’t. I’ve made sure to give myself plenty of time to internalize this habit. This is what helps me, you are welcome to find something that helps you.

And with that, I am going to spend a little less time writing or doing therapy this week (though I have been supporting a few sessions via tele-health with Chris and Amara while we shelter in home for the next two weeks, both of whom I am grateful to say are remaining on our therapy team). I find that to care for my own well-being right now I am needing a little more from the company of books that are just for fun. And a bit more time with Hannah…and Father Brown, of course. Be safe and take care of your own wellness– each and every one of you.

Speech therapy with Chris on-line for the next couple of weeks. We will still do a post at some point about what we have been working on in home. Photo by Ariana
Finding a little joy even in the thorns. Tony stepped on a thorn and cut his foot, Andy carried him home and he loved the ride. March 23, 2020.
Ariana's Posts

Waking Up To The New Norm

Posted on by Ariana
Photo by Andy

This is a post where I feel almost as if a leaf-blower is swooshing through the folds of my brain, whisking away words like decaying leaves and leaving me uncertain how to best proceed. Originally, I planned for a different topic. However, I do think local events of the past week need to be addressed. I think the amount of public energy being spent overall on chronicling or speculating about future happenings with the current COVID 19 pandemic is fueling an unproductive sense of panic and hoarding within our local communities. And these very behaviors are ultimately going to end up hurting the exact same vulnerable groups within our community that “social distancing” and isolation measures are designed to protect.

Photo by Andy

Individuals with immune compromised conditions (such as those receiving radiation therapy or with auto-immune disorders) who have a greater need for cleaning supplies at this time are unable to find them. Individuals experiencing homelessness are being denied access to facilities they depend on, and food banks are unable to purchase food even with monetary donations because shelves are barren. Elderly individuals may have to go from store to store to store, exposing them to many more points of public contact with potentially contagious individuals, before they find what they need if they do at all. I know I will touch on other ways this can impact the developmentally disabled a bit below, but for the sake of everyone mentioned above I hope our communities can take a deep breath and return to purchasing only what each family directly needs for the short-term.

I have chosen to discuss some of what is going on because I feel like very few of the stories I have read have mentioned the impact COVID 19 measures will have on the developmentally disabled community here within the US. And I’m not just talking about it having pushed media coverage or possible remediation of the AAC (speech) device policy concerns off public health agendas. But imagine briefly though, if you will, how horrible it would feel being unable to communicate to those around you during these times of fear, and having that ability further delayed by all of this. Because it almost certainly will be. But there will certainly be other challenges within this community that will dramatically alter care, outcomes, and even possibly whether or not a therapist has a job to go to for a while.

So I will share a few things that are going on in the special needs community as I am witnessing them, and then I’m going to leave this topic for several weeks worth of posting at the very least to focus on other topics. Because Tony is sick again (his third time in the past two months), I may also need to postpone my comprehensive speech therapy update post to allow for sufficient therapy sessions for pictorial documentation.

I will start with the stores then, since we have already gone there. A week ago, I asked Andy if he could pick up some more of Tony’s oranges on the way home. Our little man cannot swallow pills, so we give him any medications that only come in tablet form by wedging the pills in orange slices. Right now, he has three tablet doses per day. This is the picture Andy sent me of our local produce section:

Photo by Andy

Sometimes, individuals with developmental disabilities have specialized dietary needs, and the hoarding and panic has drained shelves of items other than personal cleaning supplies that may be needed. We were also having to ration gluten-free bread early in the week for Tony because none could be found in any of the stores we visited. I luckily had also ordered some of our basic household needs on-line at that start of his second illness a couple of weeks ago before our on-line vendors ran out because I wasn’t sure how long it would take for him to recover.

Fortunately, we have been able to find oranges since the above picture was taken and I was able to find some less popular on-line vendors that carried some of his gluten-free snack bars. However, because all of the panic-driven crowds, lines, and empty shelves freak Tony out, we don’t have the flexibility to go store-to-store once he recovers from his current illness. After our first two attempts to pull him through his most preferred stores under these conditions before he became sick on Wednesday, we realized we could not continue to take him into public spaces until this type of shopping behavior calms down. Without the help of Casandra and Emily, we never would have been able to successfully complete those outings.

Some families within the developmentally disabled communities have already lost their habilitation or ABA therapists. When the schools closed their doors, some therapists were unable to find child support and are having to stay home with their kiddos. Therapists get paid only if they provide services.

Many organizations have enacted strict protocols for when therapists can go into a home, and we have heard warnings from some therapists that DDD and/or their own specific organizations are considering pulling therapists from the homes altogether for a period of time. For individuals with Autism in particular, they really do best when schedules, routines, and therapists are kept stable. Some companies want to go to Telehealth, but that won’t work well at all for some individuals, including our son.

Some organizations do not want therapists to go into a home of anyone who could have been exposed to COVID in an effort to reduce spread. What this means, potentially, is that any family working in certain areas of healthcare (including ours) may loose access to therapists for months- even if nobody in their home becomes infected. Some providers already don’t want to see a patient if any member of the family has had a runny nose even. Y’all, I get seasonal allergies between February and May that are somewhat brutal, with the local Olive trees seemingly trying to kill me by the time April hits. A runny nose and an occasional cough is a given for me without COVID during these months, and for some providers that means we may not be receiving services from them as they seek to ensure safety for their other clients.

I was trying to get some extra yoga into my morning to help me emotionally cope with all of this, but Bandit had other ideas…Photo by Andy

I want to be clear I am not judging, I want everyone to have what they feel like they need to be safe. But emotionally, as a mom whose kid is going to be dramatically impacted by all of this, I am reeling from the emotions caused by contemplating what the fallout from all of this will do to Tony. I have already been doing physical therapy exercises with him myself for months now because that therapy position remains unfilled, but I wonder how much it will setback his long term progress to loose access to all of those other supports and specialists as well.

Currently, epidemiologists are saying that we can expect waves of infection and outbreak for the next 18 months until a safe vaccine is available. What I have been seeing is a general consensus that unless we all “shelter in-home” until that vaccine is available, which I don’t see as being sustainable, we won’t really be able to contain the spread of this virus. What is currently being asked by our public officials is meant to slow the spread down to keep health care facilities from being overwhelmed by a bunch of cases occurring at the same time. These measures are also being done in an attempt to protect the lives of our society’s most vulnerable individuals- for most individuals, this probably isn’t going to feel different from many other respiratory infections.

I think there is a lot of fear right now, and fear makes a lot of the best parts of society fall apart. And some of society’s most vulnerable individuals usually get hit the hardest by these types of events. In our house, we mourn for the families who will loose loved ones. We mourn for those who have already lost their jobs. We mourn for those who are going to loose their jobs. We mourn for those who will face discrimination because of the prevailing atmosphere of fear. And we mourn for those who may loose access to therapy services and supports as we wake up every day to this ever changing new norm.

And, one final screenshot for this post of something to be aware of for those families who already have assistive speech technology during the current school cancellations…
Ariana's Posts

Give It Some Time

Posted on by Ariana

This is a picture of Tony’s current AAC device that was taken right after he requested to watch one of his favorite Tinker Bell movies early Thursday afternoon. And as a picture, it communicates even less than our little man did in the asking. You don’t know how long it took him to make these requests, if he had any assistance, that sort of thing.

Even a series of pictures won’t give you that information. In this set of pictures taken the same day during a request sequence, our little man is telling me that he needs to go potty and that he would like a certain type of Popsicle as his reward. Tony is very willing to use the bathroom…if he gets something in return for it, and he always follows up any at-home notification of bathroom needs with a treat request. You can clearly see what he was touching, but the timing, etc. is still not conveyed.

I can put up video of a similar request (and I did so below) but maybe even this might not tell you everything you would need to know to help independent communication grow in an individual with deficits similar to Tony’s.

Our son was in his underwear at that point, so I needed to crop most of him out. Still, he’s moving pretty quickly. But, I think an important piece is still missing. We don’t know how long he had been thinking about making that request before he initiated it so fluidly. Take for example the video below:

Sometimes it is easy to think that because it appears Tony is asking for what he wants so smoothly that he doesn’t understand what we are asking him if he takes longer to respond to something else. In this video, he seems to give a fluidly flowing request for TV. What isn’t seen is that I asked him two minutes prior, he didn’t make a response, so I told him. “Alright Tony, I am going to watch something for me on Netflix since you don’t want to watch anything.” That is the point he grabbed his device and asked for what he would rather watch instead- a Veggie Tales movie that we have on DVD.

I imagine it is a bit like the process I muddle through sometimes when I am trying to think of how to say something in Spanish that I am less practiced in verbalizing. I take several moments to try out possible wordings before I even open my mouth. But, to the person hearing me, they might not know the length of my formulation process if I am initiating the conversation. If I’m answering someone, they might get more of a sense of how much better I am at reading Spanish than speaking it. There is the delay while I process what they said, and then perhaps another few moments of pause while I try to switch the language I am thinking in. Perhaps they might think I was slow of understanding, or that I couldn’t communicate adequately…and sometimes they might be right depending on the subject 😉

To help strengthen the skills for independent communication in a non-verbal loved one, sometimes you have to wait them out and let them finish on their own- even if the wait feels a little too long because of your own speed in processing for that language. Below is a video of Tony making a request that takes longer. I tried to add one with TV to keep it comparable, but that video for the request from start to finish was more than two minutes, including breaks for stimming and flapping, and I got an error message stating it was too big for this blog. So, we’re going with a different video requesting food:

In this case, you can see he grabs what he wants first, then gets distracted at multiple points to run off and flap. He was in his undies, so again, I focused the camera on the device. Our kiddo definitely is highly distractible. Allowing that process to play itself out allows for communication that overall gets quicker over time.

Here’s a few videos of requests/responses that played out much quicker:

Sometimes we have to allow even more time for Tony to respond if there is a lot going on in an environment. High amounts of other sensory input can add to difficulty in filtering out our requests and responding to them. However, when we can allow him the extra time he needs, we get more of the growth we want. So if you are new on the journey of teaching a non-verbal loved one an alternative form of communication, give some extra time for processing, and fade out or eliminate the prompting as much and as soon as you can without discouraging the amount of communication he or she is willing to do. This will more rapidly lead to the communication independence your loved one is needing.

Ariana's Posts

Speech Device Battle Coverage Update & Notice to Cure

Posted on by Ariana
Tony & Chris during speech therapy, working on describing what is seen using his AAC device. Photo by Ariana

This is an impromptu post for the week, and my originally planned post with a few videos will still be running on Friday. I will do my very best to keep that one much shorter.

More than a month ago, someone forwarded to me the original media alert sent out by the Autism Society of Greater Phoenix, along with a complete copy of the joint demand letter sent to DES and the AHCCCS Administration by the ACDL and the Arizona Center for Law in the Public Interest. These documents were given to me more than two weeks after they were sent out. Because I hadn’t read anything about it on the website of my favorite local news station, I searched Google. I couldn’t find any reporting on it.

I know I am a wordy girl, sometimes a bit too much. But in that moment, every word I had was smashed by feelings complex, intermingled, and distinctly shaded with tones of grief. Hundreds of Arizona children in need of medically necessary assistive speech technology have been waiting and their families have been fighting for months. What I have been writing about for Tony isn’t just our struggle. The state agency many of us rely upon for services for our disabled or differently-abled loved one covertly adopted a policy that appears to break both state and federal law. And nobody was reporting on it.

And one thought crystallized for me: “Why isn’t there more reporting about this? Do our kiddos not matter to media audiences as much because they are non-verbal?” Today, I opened my latest e-mail from Raising Special Kids and saw that finally someone local had reported on this after the AHCCCS Administration Friday afternoon sent a notice to cure to DDD. The notice of cure directs DDD, among other things, to remove all AAC policy conditions that violate federal and state law, and in the meantime our families continue to wait for appropriate action to follow these directives.

I do know there are so many worries calling for our attention, a whirlwind of celebrity doings, deaths, political happenings, and corona virus. Maybe this story doesn’t impact you right now personally. But think for a moment what it would be like to be struck by a crippling medical surprise, such as a stroke or an accident causing traumatic brain injury. To have your ability to speak, to write, to communicate in any way you are familiar with taken away from you…but to retain your understanding. To still know what you want, what you need, what you like, and what you don’t like…and to be unable to tell anyone. How would you feel? How would you act? And, what kinds of supports would you want from health care, agencies, and loved ones? How would you feel to know that there are technologies available that could help you, but you might spend nearly a year fighting for them and end up needing to get an attorney to successfully make it through the process? Can you even afford an attorney for that kind of battle?

The ability to communicate seems to be taken for granted. And often people think individuals with certain conditions can’t really know what they want. When our little man was in a public developmental preschool, they used to take away his speech device because he kept asking for ice cream. The teacher of the class actually asked me once, “Does he even know what ice cream is?” I assured her he most certainly does, had in fact requested ice cream for breakfast just that morning, and when I told him no, climbed into the freezer, grabbed out the tub, and slammed it on the counter. Our little man, for all his lengthy list of conditions, is still a kiddo who definitely loves sweets. When it comes to things he wants, our son understands exactly what he’s asking for and will correct you on his current malfunctioning AAC device if you bring him the wrong thing.

Tony understands a lot more than most people realize. And maybe he doesn’t want to describe things or talk socially, but it definitely matters to him that he can tell us exactly what he wants and needs. And it matters to every one of these families also, many of who don’t even have as much as a currently malfunctioning AAC device to work with.

I spent the first part of last week filing grievances with the AHCCCS Administration, another grievance with DDD, and writing over six pages worth of an appeal that never should have had to be written. As I prepare for a potentially ongoing battle that may still require a lawsuit, I am asking each of you to close your eyes for a minute and imagine what it would be like to wake up a prisoner in your own body. Awake, alert, aware, understanding…and unable to ask for a single thing you need.

Some day, it could be any one of us who needs these services. These kids need each of us to care about what happens to them. If we don’t, who will care about us should their needs become ours?

You can read more about what has been going on and see some of the documents (including the notice to cure) listed in the reporting done by KJZZ this past Saturday by clicking here.

Ariana's Posts

Gratitude & Some Reading

Posted on by Ariana

Chris

Tony & Chris during speech therapy, photo by Ariana

Chris, you have been a pillar of patience on our therapy team for more than a year now. I can imagine the types of things you could have been thinking when your boss told you that I was asking to meet with you and observe how you interacted with our son before I would commit to transferring him to your schedule. Thank you for not being scared off by that alone.

I am sure by now, of course, you understand why I felt it was necessary to make such a request. We are the proud parents of a very special little boy with many conditions and a complicated array of strengths and deficits. Speech is his least favorite therapy type, thus enormous amounts of patience and empathy are needed for anybody working to help increase his communication skills… and you definitely have those. I am so grateful for your calm and compassionate understanding as you work with our little man. I am beyond thankful for your willingness to be flexible in your daily approach to adapt to whatever is happening in Tony’s world that might make him more combustible to work with on any given day. I really appreciate that you listen to my feedback when I think we need to try or work on something different. Your flexibility with both of us means a great deal.

Chris & Tony in his body sock, Photo by Ariana

And, I cannot thank you enough for your involvement and continued support of Tony’s needs as we have sought to navigate the process of applying for and obtaining for our son a fully functioning medically necessary augmented communication device. Ten months in and we’re now entering a phase where we may need more the help of others to finish this quest. But for everything you have done, and everything you will do as Tony’s speech therapy provider, thank you. We appreciate you, we value your feedback, and we are grateful for all you do to help our little man move forward.

A Brief Content Note

For those who are directly subscribed through my blog itself to receive the posts via e-mail, please note that I am planning for next week’s post to contain multiple brief videos of Tony using his speech device, as those will best demonstrate my intended topic. I usually don’t embed videos in the post, but the last time I used one I noticed that it didn’t carry over into the e-mail that was sent out. So, if you want to view any of the videos that will be in the post, you may need to go directly to the blog on-line. There may be a way of course to fix that, but I am not especially tech-savvy, and I am also a not-for-profit blogger who spends a great deal of time helping out with Tony’s therapy programs and raising both my kiddos. I can only apologize and say that unfortunately really can’t be my top priority, so I thank you for your patience and understanding.

A Brief Note to Other Parents Currently Applying for AAC Devices in AZ

A close up of ICD codes on page 1 of the AAC evaluation that was submitted in Dec. 2019 for Tony.

You are your child’s first advocate, but navigating the process can be stressful, especially with everything else you are already doing. If you have read the denial letter we were sent that I posted this past Saturday, I think that speaks for itself when compared to the documentation that was sent in the evaluations themselves and what is already on file with the Division. Sometimes answers you may get from your loved one’s insurance may not accurately reflect the reality of what you sent in or they have on-file. Learn what’s in your loved ones reports and where it can be found, and what types of information should be in a given type of record. Learn what the legal protections are for your loved ones, and reach out to Raising Special Kids or another advocacy group if you have questions about what your next steps need to be if you believe your loved one should not have been denied coverage or benefits.

Also, you can refer to guides on the ACDL website to help you. I have provided a link here.

Some Reading to Consider

Imbeciles, The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck, by Adam Cohen

When I was growing up, I can’t remember attending a single public school history class in which we discussed how Hitler’s regime based their own eugenics programs on American eugenics laws and practices. And yet, the Nazi documentation on this is clear- their own ideas and programs originated in American law and practice. Adam Cohen has written a compelling book chronically the extent of what American eugenicists were willing to do to secure their agenda, focusing specifically around a the case of Carrie Buck. Ms. Buck was a foster child, taken in and removed from school early so that she could act as the servant to a local family. Raped and impregnated by the foster family’s nephew, fraudulently labeled as having intellectual disability during the family’s efforts to have her permanently removed from the community in an effort to protect the rapist, she became the test subject of a case to legalize eugenic sterilization of those deemed to be a drain on society.

Ms. Buck would find justice nowhere. Told only she was going to be having an appendectomy, with an attorney supposedly representing her that was hired and maintained close relationships with the very organization trying to sterilize her, her case was intentionally loaded with fabrications and designed to rise to the level of the Supreme Court in securing legal precedent for state-ordered sterilization. The Supreme Court’s verdict, written by a judge considered a legal luminary with a clear history of believing that “might equals right,” allowed for legal government ordered sterilizations and is still law. Thousands of individuals have been sterilized using this precedent, some every bit as devoid of actual medical conditions as Ms. Buck.

In reading this book, there were many aspects that I found horrific to the sensibilities. The number of religious organizations supporting eugenics at that time defies my ability to comprehend. If a group takes a moral and spiritual stand that every life deserves to be born, then I feel this should go hand-in-hand with the idea that every life should be compassionately supported and aided in finding the best quality of life possible. Anything less, to me, seems to mock the very Creator being appealed to in establishing a right to be born. Ms. Buck’s case clearly demonstrates one of the biggest concerns for this type of law: the risk for abuse of power. Eugenics supporters of her era believed that being in poverty alone was evidence of inferiority and mental deficiency. Racial, ethnic, religious, and gender discrimination also played into the ways eugenics supporters wanted to see these types of law applied. And, sometimes those themes can still be seen today. To quote the author, in 2011, “the first vice chairman of the Arizona Republican Party, a former state senator, was forced to resign after he publicly called for the sterilization of women on public assistance.”

There are delicate moral and ethical issues involved in these matters, but I think Mr. Cohen aptly addresses this in the closing words of his book. “In an era when so much of America was caught up in social Darwinism, and channeling ideas about survival of the fittest into a cruel biological ideology, few paused to contemplate what Charles Darwin himself had said on the subject. In The Descent of Man, he conceded there might well be practical advantages to abandoning ‘the weak and helpless,’ But doing so, he insisted, also brought with it ‘an overwhelming present evil.’ We must allow the weak to ‘survive…’ Darwin insisted. Doing anything less, he said, would mean abandoning not only the weak and helpless but the ‘noblest part of our nature.’”

Screen shot taken from Imbeciles, by Adam Cohen
Ariana's Posts

Speech Device Update: Denial Received & Initial Response

Posted on by Ariana

Today, Andy and I took turns waiting at home to sign for a letter from the department of the Arizona Division of Developmental Disabilities that handles applications for speech devices regarding their ultimate decision on the recommendations of the AAC (Augmentative and Alternative Communication) evaluator. For those of you new to this blog, I will post links to the history of the ongoing series of denials, appeals, etc. for this current device at the end of this post. For now, be aware our son is considered non-verbal by speech therapy standards, currently being unable to make several consonant sounds, struggling to connect two sounds together, and having less than ten recognizable word approximations. He has already been functionally using an AAC device since 2015 (the list of witnesses for this outside of our own word that we have within the community and on our son’s therapy team is more than sufficient at this point), but his current device has been malfunctioning for approximately a year now.

This is what we received:

I am going to keep my comments at this time to the realm of verifiable fact, because this is a matter that may be resolved in the courts at this point. Our son’s medical conditions, level of functioning (verbally and otherwise), are heavily documented. We adopted our son from Foster Care here in the great state of Arizona when he was 9 months old, so every aspect of his developmental and medical path has been highly documented. While the truth matters to me a great deal, I don’t expect those of you who don’t know me to believe that without seeing some things that are verifiable. I will only be putting up portions of the documents that both DDD and I have copies of in regards to this matter. I certainly have the full reports (some of these pictures have appeared in previous posts already, but are reposted here for the benefit of those new to our blog) and DDD does also, having been provided them via e-mail by either myself or the provider who completed the assessment. Please note last names have been redacted wherever necessary to protect privacy.

From Dr. D, who is a sharp as a tack developmental pediatrician working in the metro area:

From Dr. Shane Hunt, who completed comprehensive educational and evaluative testing (including IQ) that was requested by representatives of the Division in violation of their own policies during our son’s 6 year re-determination for eligibility (please note again, DDD was given the full report and findings):

From Tony’s Geneticist, who is quite frankly, awesome:

From the Speech Evaluation done and submitted with the current speech device application:

A small portion of the evaluation submitted by the AAC evaluator:

I’m not even sure I need to say more.

As those of you who are either a close personal friend or a member of our therapy team already know, we have been in communication with the ACDL about our son’s situation. I reached out to them after seeing the January notices that were sent by the ACDL and the Arizona Center for Law and the Public Interest to Interim Director Christ of the Department of Economic Security (which oversees DDD).

Coincidentally, I received this from the ACDL a couple of days ago, and I believe it is important information to know for others who may be engaged in a similar effort to obtain medically necessary assistive speech technology for a disabled loved one in the state of Arizona:

Certainly, the ACLPI will be hearing from me. And, they probably won’t be the only ones.

For those of you who are new to our blog, you can read a little bit more about our current ongoing AAC device path here and here.

Ariana's Posts

Checking In With OT

Posted on by Ariana
Amara encouraging and waiting for Tony to engage in a different way of sorting the therapy tube balls, all photos for this post by Ariana

Over a year has passed since our last occupational therapy (OT) update. Shortly after our last post about what we were working on with her, Amara went on maternity leave and another therapist was covering as our little man’s OT provider for a few short months. We are grateful Amara was able to resume working with our family, but as any provider who has worked with Tony knows, if you take an extended period of time off for any reason, he usually needs a period of readjustment. Especially if he likes a person, he may be both grateful for the return and simultaneously less cooperative. I think sometimes it’s his way of providing a consequence for behavior/circumstances he doesn’t approve of. Usually we can be assured he’s gotten over his hard feelings about these types of absences by the time he’s either returned to giving hugs or asking for tickles and/or chase.

Most of this post will be dedicated to pictures and descriptions of what we are currently doing and accurately reflect our real world circumstances. I cannot be the full-time clutter police right now, I have a very lengthy list of things to accomplish and nowhere enough time in which to do it. A few of the pictures used are for things we are working on to support occupational therapy goals in our own time, because there are enough activities rotated through in OT we weren’t able to picture all of them with Amara.

Amara arrives at the end of Emily’s Thursday shift, and he often has to be prompted to say “hi.” Social niceties really aren’t something he sees the need for, though he is getting better at initiating salutations. Sometimes, because he’s such a middle of the night party animal, he may start to fall asleep while we are waiting for her. If that happens, I open up one of his preferred educational apps, because those will usually perk him up enough to participate when she arrives.

Tony continues to have a lot of sensory problems related to tactile defensiveness with his clothes, but we are continuing to work on having him wear his clothes for therapists or guests. Sometimes he will decide this means we need to go somewhere, and he will get his car safety harness and start making requests. If Tony is already dysregulated, I may choose to allow him to stay in his underwear, and often he still takes off his shirt and pants/shorts before the end of a session. One of the biggest improvements we are seeing in all of his therapy types though, is an ability to remain calm without self-harming when told that we will be staying home and doing therapy instead of going wherever he requested.

Usually when Amara arrives, Tony isn’t enthusiastic about engaging in any of the activities she wants to do. She will then invite him to participate in a task he’s usually more willing to do, like color sorting. This toy is designed for duplicating patterns, but Tony has a strong preference for color sorting and pattern repetition is still a work in progress.

  • Emily & Tony

We’re working on fine motor skills for tripod grasp and we’re working on Tony imitating a drawing both vertical and horizontal lines on a white board. Sometimes he stops with the line, sometimes he does more of a scribbling motion in the appropriate direction. We also continue to have him trace a variety of lines and shapes on his iPad mini.

Yes, I still purchase a whole lot of toys to help support our goals. This one I got because I thought he’d be more more motivated by the color sorting aspect to maintain a sustained tripod grasp while moving in multiple directions, which will help build up those hand muscles to improve his fine motor skills.

Here, we’re working on the Lite-Brite to improve fine motor skills. He’s not interested in making pictures, we’re just putting in the pegs.

  • Ariana telling Tony to spit the pegs
  • Amara & Tony

Often he gets frustrated, and tries to chew on things he shouldn’t (such as the Lite-Brite pegs) or needs comforting. He sometimes requests a couple minutes of a TV break independently, other times we will need to remind him that he can do that if he needs a few minutes away from a task to calm himself.

We’re working on a lot of functional play. The train puzzle assembles more like a jigsaw puzzle, but has pegs to hold. I bought these as part of a strategy to help build him up to working jigsaw puzzles with more than a few pieces. We also assemble different toys for hand strength.

We are working on four piece jigsaw puzzles.

We’re also working on some eight piece jigsaw puzzles I purchased from Discount School Supply that we also use for labeling emotions. For jigsaw puzzles more than four pieces, he can struggle with how to start the assembly and I may need to place one piece to start him off. He may also need guidance for at least two other pieces as to where they might go, and then he is able to independently finish the rest of it.

This toy I purchased a long time ago because I thought the tongs would be great for building tripod grasp, but the included tongs are still too big for him to hold comfortably. This is a design flaw that I still feel the manufacturer needs to address given the age of the target user (preschoolers and kindergartners who are much smaller than my nearly 4′ 6″ kiddo), but we have been using it for functional play by allowing him to sort it with his hands alone. Amara has been working with him to use small kitchen tongs, and he usually needs some hand-over-hand support. He is able to get a few beads in on his own, and he often tries to find creative ways to simplify the task. Here for example, he is picking up the bead and trying to put it by hand into the tips of the tongs, so Amara will redirect him to put the ball down and retry.

We’re also working on self-care skills (activities of daily living) such as hand washing, hand drying, and brushing hair. Up until recently, he couldn’t get his hands behind his head well, we are seeing an improvement in his range of motion there, but he still often doesn’t have the patience to brush his full head of hair himself.

When we talk about some of the sleep difficulties Tony has been having with his ADHD medication, I want to make it clear that there is another side to this situation. What we are able to accomplish in some of his other therapies is more than it was before. The interactions between Tony’s different diagnoses are complex. We, as his parents, with his medical providers continually have to weight the pros and cons to things, and when it comes to his joint attention, there have been some huge pros. The current medication has certainly led to improvements in his participation during occupational therapy, and we will continue to work with his developmental pediatrician to try and find ways to address his sleeping needs, because that also is important to everyone involved.

Amara has noted and seen the improvements, both in joint attention from the Guanfacine, and from Tony’s own efforts to react safely when he’s upset. A few months have passed since Tony last tried any self-harming in OT. We are grateful to both Amara and Tony for all of the work they do as he continues to move forward.

Ariana's Posts

Vacation for Two

Posted on by Ariana
Hannah & me in our hotel room, photo texted to Andy letting him know we were ready to Skype. Selfie by Ariana

Our last family vacation happened over two years ago. The extent of the work required to pull off that trip successfully left me feeling far more strained and stressed than if we’d stayed at home. Frankly I can’t recall a time when I was so pleased to return home. For Hannah though, we had still been able to deliver a quality experience.

Several things have changed since that trip. Tony is now way too big to fit in a regular stroller. Special needs strollers for an individual of his size are quite expensive- far too much so to justify the cost for something that we wouldn’t really use for any other occasion given how mobile our little man is. We had to pull back on most of our crowd work this past year because of Emily’s foot surgery and recovery period. Every time we’d start back up again after she got back, another major aversive event like a therapist leaving would occur. Given Tony’s size, working safely through his fear of crowds requires him to be in a calmer place emotionally where everything else is concerned.

Emily & Tony, public therapy at Bashas right before Hannah and I left, photo by Ariana

My idea for doing staycations to practice his hotel skills was a good one I think, but untested. We felt we were unable to even attempt it because his middle of the night waking since starting the Guanfacine can come as early as 11pm, and usually brings with it intense hyperactivity and vocalizations. On our November 2017 trip into Disneyland, the couple below us called security on us just for him being up and running back and forth across the floor several times around 3:30am. No vocalizations, maybe as much as a single jump. Nothing like the middle of the night bursts of energy and noise we are currently seeing. Those, I think, cross the line of what we could reasonably expect others to be patient with even if we were removing him as quickly as possible to our home. We really need his sleep to be more stabilized during the main hours of the night before we will feel comfortable trying that type of work.

So, the above factors make most vacation locations out of reach for a combined family vacation at this time. If you don’t think Hannah needs a regular vacation at this point, then you are either new to this blog (in which case, welcome!) or you may not have had the time to read every single post. This past fall, Andy and I began discussing what we could do to get her some sort of trip away. When asked where she wanted to go, our girl was adamant. Disneyland. Neither of us thought it would be a good idea to try this with Tony at this time. The crowds at Disneyland overall continue to rise, and given their ongoing effort to manipulate pricing tiers to regulate park attendance throughout the year, I honestly am not sure we will ever see a time again where we can be assured that park census would be low enough that Tony will feel comfortable walking through that park on his own two legs.

LOL! We were freezing our backsides off, but still happy to be spending so much time together, photo by Ariana

After a fair bit of discussion, we decided I would be the one to go with Hannah. I have never been away from Tony more than several hours, and usually he struggles emotionally and initiates more attempts at self-harming on those occasions where I have been gone the longest. As you may recall, on the first overnight trip away from home Andy and Hannah took, our little man stopped eating, stopped communicating, and increased his attempts at self-harming.

We have done a lot of work with him since that trip, but we knew more would be required to pull off an even longer trip where I would be gone. Andy requested off a week of vacation from his job so that he could stay home with Tony. We put together Pictello stories to explain to him what would be happening, and how long we would be gone. I created the story about our trip, and was very specific about when we’d be leaving, how long we’d be gone, why Tony was staying home with Papa, who would still be coming in to work with him during those times, etc. We made sure to frame the reasons for Tony staying in the light of helping him to keep his routine and avoid things he finds scary, unpleasant, and overwhelming to deal with. This story was read to him once or twice a day for the first month. Honestly, he was pretty unhappy the first time we read the page about Hannah and I being gone for three nights. Emily created the story about what Tony would do while he was waiting for us to return.

Photos of Pictello stories by Ariana, shown Disney attraction picture taken by Emily from one of her own trips, used with permission.

Tony & Andy doing public therapy at Culver’s while we are gone, photo by Andy

We practiced Skyping, and tried to arrange a few times where I was away from home for several hours in the month leading up to the trip to help Tony get more used to me being gone. All of this was a bit complicated by our son’s illness in January, and I honestly wasn’t sure how our little man would react to all of this once we were gone. I told his therapy team to expect that we could see a significant spike in self-harming. Emily agreed to place some of her make up hours from Tony’s illness on the days of our trip so that our little man would have extra support if needed, and we discussed a public therapy schedule that would only include locations that were highly preferred.

Tony & Andy on one of his most preferred community safety routes shortly after we left, photo by Andy

The morning Hannah and I left, Emily and I took Tony for a quick public therapy outing. We reminded him we’d be Skyping twice a day. Hannah promised him that we would return. Then, she and I loaded up into my car and started the drive to California.

I have Hannah’s permission to talk about our trip, and where we went. I think the pictures do a lot of talking for me- from my perspective this was a trip about focusing on her, not creating content- but I will still add a few more details. This has been a year of much healing in our family, and for both of us, this trip was an extra bit of needed balm to our spirits. I let her give the deciding votes on where we would eat. She got to pick most of the rides. For me, there was a lot of joy in being able to give her so much of my time.

  • photos by Ariana

For me personally, it has been years since I could walk through anywhere for this amount of time in such a carefree manner. I had nearly forgotten what it felt like to relax without the constant awareness needed to protect a kiddo with heavily impaired risk assessment. I texted Andy frequent pictures and updates of what we were doing. He likewise texted me some pictures of his time with Tony.

  • photos by Ariana
Tony waiting calmly for NMT on our trip, photo by Andy

Part of why I was able to enjoy everything so much was that with every Skype back home, Andy assured me our little man was remaining calm. Honestly, our success in preparing him for this trip as measured in Tony’s behavioral reactions exceeded my hopes and expectations. We have learned a lot through this about what Tony understands and how much transitional preparation he needs to calmly weather events he finds aversive (about a month). I can proudly say I was dead wrong in warning his therapists that most likely they would see an increase in self-harming. Instead, they saw none! Woo-hoo!!!

Honestly, the best moment in all of this, for me, was hearing Hannah say how much fun it was to be with me. She and I both loved our trip, though she mentioned that the Kingdom of the Mouse is starting to seem like a bit of “a money-grab,” as she puts it. She says maybe next time, she’ll want to try Six Flags. I texted home pictures of packing up, and had Hannah text a picture of me driving on the roadway headed towards home to show Tony. We walked in just before Amara arrived to start occupational therapy to a scrubbed down kitchen and a vase of roses.

  • by Ariana
  • by Ariana
  • photo by Hannah

Andy, thank you.

Emily, thank you.

Hannah, thank you. You are a lot of fun to be with too, my sweet daughter <3

  • We broke down here…
  • Here too…
  • Still had fun!
Ariana's Posts

Hannah’s Gift & Gallery

Posted on by Ariana
Photo by Hannah

As I am typing this, it is 1247 AM MST. Tony has been awake since 1123 PM. So I’m writing this on three hours of sleep. The last two nights before this one, he woke up at 206 AM and 156 AM…and didn’t go back to sleep. We talked a fair bit about this last month because we can’t really separate me out from these circumstances. Sometimes so much of my identity has been stripped away by our experiences that I want to give voice to some of the impact to my personhood and mental health in all of this. Yes, the primary disabilities and symptoms are Tony’s. But it is important for everyone involved to understand the impact all of this can have on the immediate loved ones and caregivers.

Photo by Hannah

But what about Hannah in all of this? Hannah is and always will be incredibly important to us and to me. She is more deeply loved than I can say, and has been from the moment I found out I was pregnant with her. People told me I should temper my hope and joy, reminding me I could miscarry. Certainly I understood what the possibilities were with that, but I knew in my heart and felt it in a way beyond being reasoned with that not only would this sweet child be born, but she would also be a girl. I am still filled with gratitude for modern healthcare in all of this. Our girl was placed in my arms for the first time after having been delivered safely via an unplanned emergency c-section.

Photo by Hannah

I have been blessed to be her mom each and every day for more than 13 years now. I think Hannah’s experience and voice in all of this are incredibly important to be heard and acknowledged. However, in writing so little about her for the past several months I honor her wishes to “speak” publicly – or not at all- in a manner of her choosing about her own views and experiences. Having made some of the same choices as I have this past year, she and I have had some similar experiences. Neither of us would change a thing about certain choices, but I know for me personally, I have definitely gone through more pleasant things on the interpersonal level. I am proud of her courage, her grace, and her commitment to doing what she believes to be right- and I am choosing to respect her choices to walk through all of these circumstances in the way that works best for her with my unconditional love and support.

Much of what we do together right now, therefore, remains curtained off behind the scenes at her request. You are welcome, of course, to imagine yourselves in her circumstances, but I caution you that the hints of what you think she might feel may or may not accurately reflect her own perceptions about these experiences. All that being said, I have been given Hannah’s permission to share a little bit during the next couple of posts.

Photo by Hannah

With so little sleep and a social circle that has been functionally decimated, I owe something of my emotional well-being to a gift that came from Hannah sharing her world with me. For many years now, any makeup routine I had was utterly basic and simplified. This past year she opened my eyes to how much more artistic I could get with my eye shadow in just a few minutes a day, which has become an emotional self-care lifeline for me. I am a person who processes a lot of life’s challenges through creating art, and my current schedule really has stomped out the life and time of most anything else I used to do. So I do something different and colorful with my eye shadow nearly every day and it has given me just enough connection to my creative side to emotionally weather some tough things. I have also made sure to directly express my appreciation to Hannah for her role in all of this. She inspires me in so many ways to work harder at being better, and I am so grateful for her.

Hannah is her own unique person, yet she also has enjoyed artistic hobbies since she was very young. Several years ago, she came down the stairs, informed me she was starting a shop, and spread out across the counter a collection of drawings she had made. I was informed the price per piece and asked if I wanted to buy any of them. She looked up at me, quietly waiting for my answer. I will forever treasure the memory of her glowing eyes when I said that her drawings were worth at least double what she was asking for and bought them all with this newly revised price.

Sometimes, when we are doing therapy with Tony either at a clinic or at home, Hannah takes pictures that are expressions of her creative vision rather than documentation of what we are trying to accomplish. I currently pay our sweet daughter for any picture of hers that she is comfortable with me using on this blog, and recently I asked her if I could do a small in-post gallery with some of her more recent non-therapy related photos.

Photos by Hannah

She produces enough artwork these days that certainly I cannot afford to purchase every piece. The pictures used for this post are the ones I purchased to share with each of you, plus a couple photos I took of some of her recent drawings (shown below). All have been posted with Hannah’s permission, and any of them could be removed at her request should she want that at any point in the future. The outdoors shots were taken during a music therapy session, and she was wanting to frame them in such a way that the surrounding city wasn’t as evident. She positioned the shots of some of Tony’s therapy toys in a way that was designed “to convey strong emotional messages.” (as per Hannah herself)

What isn’t pictured is how much Hannah means to me. Every artistic medium available is lacking in sufficient depth to portray that. And now, it is 151 AM. Tony is still awake, but I am going to end my writing for this post so that I can help him use the bathroom again. I hope each of you has a week where you can find something- big or small- to help you feel like your spirit has been nurtured.

Drawings by Hannah

Ariana's Posts

February Gratitude & Reading

Posted on by Ariana
Amara & Tony working on fine motor, Photo by Ariana

To Amara

For roughly a year and a half now, you have patiently come into our home once each week to provide Tony’s occupational therapy. Since that very first visit I have been grateful for your positive attitude and your willingness to meet Tony where he is at. You have a wonderful way of listening to and applying feedback about our son’s needs. You have put up with all of my crazy, listening kindly when I have described some of the personal happenings that have been going on as they impacted Tony’s emotions.

Thank you– for being so good to him and so understanding with me. I feel like this note is long overdue, and I am so sorry for that. I am very grateful that you returned to working with our family after your maternity leave. I deeply appreciate your willingness to work with scheduling changes we have needed for Hannah’s schooling. I see your passion for helping others every session, and anybody who works this well with Tony is truly a special type of therapist…the kind the family of any developmentally disabled kiddo would be lucky to work with. For all you have done, and everything you will continue to do, we are profoundly grateful.

*Please note that an OT update will be coming later in the month. Between Tony’s recent illness and Ariana being out of town for a few days this past week, we are still working on getting pictures for all the different targets we are working on

Reading To Consider

The Element, by Sir Ken Robinson, PhD

This book, written by educational consultant Ken Robinson and published in 2009, weaves together multiple themes related to learning and individual talents that I think need a wider discussion in our community. The general underlying theme is that our educational system favors mainly one type of thinker, and is geared towards delivering a “fast-food” approach at educating future workers. And, as the author points out, generally the food at many fast-food restaurants is not of the same caliber as establishments enabled to use more creative culinary processes. More than 10 years have passed since this book was written, and much remains unchanged about the approaches used in many of our schools.

The author highlights the stories of many highly successful individuals that were seen as either problematic to deal with in the school system, or deficient learners. He starts by citing the case of Gillian Lynne, whose teacher felt she had significant problems that needed diagnosis and treatment because she could not stop moving in class. After observing the girl twirl around the room, the psychologist informed her concerned mother that “Gillian isn’t sick. She’s a dancer. Take her to dance school.” She went on to become a world famous dancer and choreographer, but as the author noted, in our modern school system she would have been prescribed a medication to inhibit her movements and sent back to her original classroom.

Some of the medications used to treat behavioral differences such as hyperactivity are often used to allow for the maximum number of students to be taught by a single adult. However, they don’t always address this concern enough to achieve even that and they frequently ignore individual differences of talent and learning. For our son, his current ADHD medication has reduced the intensity of his hyperactivity a fair bit, but certainly not enough for any teacher under our current system to view him as instructable or manageable without a one-on-one aid. We still spend a huge amount of our day running, and he still can’t sit for longer periods of time. If Tony could run at least five miles a day, he would honestly be a lot calmer, and it might even have a similar overall effect to the medication he’s currently taking. (If you’re wondering why we haven’t tried that, I have a history of Achilles tendon ruptures on my right ankle and that’s a bit more running than I should be doing).

This leads into another theme of this book, which is that different individuals have different ways of thinking and processing the world. As the author points out, our current educational model favors mainly one way of thinking, and many of the standardized tests used to evaluate a person’s intellectual abilities are skewed towards that end. These tests also have roots in the eugenics movements, which has had a very dark history in America that is frequently glossed over- especially for the developmentally disabled. My recommended reading choices for next month will expand a bit more on that subject.

The author goes on to cite some examples of redesigned teaching approaches that have been used to successfully deliver improved outcomes in some communities and schools. One of the main themes I saw in each of these approaches was that they were often more personalized to the students. One solution discussed in this book was a school that paired its early readers with volunteers at a local nursing home. The students ended up with reading scores well above grade levels. I think the magic ingredient there was that this program allowed them to have more extensive time with one-on-one guidance tailored to their specific learning needs.

He wraps all of this around a message about how each of us has a dominant gift or skill that brings us joy. He states that oftentimes tapping into what this is can allow higher levels of individual happiness and success. To a certain extent I feel like the book toggled back and forth between this message and his thoughts on ways to improve learning in a manner that made it difficult to determine exactly which one was his central message.

While I think this is interesting reading for anyone involved in educating a child, I believe some of his recommendations are invaluable when it comes to teaching a child with developmental disabilities. There is no “one size fits all” approach that can produce quality outcomes within this community, and I believe that achieving the highest quality outcomes for these individuals truly involves understanding their interests and looking for their own unique gifts and skills.