Does anyone see the problem in this picture? And no, it’s not the beverage. I don’t drink – been living the sober life for decades. Photos by Ariana
Some of you might, but if the statistics are accurate, more than 70% of you didn’t. And, I didn’t either. So let’s take a closer look again:
Note the lilies…
And here’s what I found out after watching sweet, innocent Bandit rub his nose into the stamens of the lilies in the bouquet Andy brought me and deciding it might be a good idea to ask Google if they’re safe for kitties: they’re not. In fact, they can be very, very bad. This is the first time Andy’s ever brought me home anything with lilies in it, and all I had were the vaguest of memories about something Gena said once a long time ago that I couldn’t fully recall about lilies and pets running through my head to prompt me about checking.
Each of you has to understand that my silence on most things related to Hannah for the past while is at her request. Privacy is what she craves right now, and there remains no accurate way to shrink the love I feel for her into such tiny words as this blog can offer. She gets what she needs if I can in any way give it, and helping Bandit recover is super high on that list, and therefore has been the quest for me of a few days now. I can’t even begin to express how horrible I feel that I didn’t check before that sweet kitty got a chance to press is nose into the flowers and take a few sniffs, but I am thankful immediate treatment and hospitalization protected him from kidney failure.
I am so proud of Tony, he kept his mask on for the entire wait in the lobby and he let the dentist look in his mouth!
And the very day after Bandit was admitted to an emergency animal hospital, I found a piece of one of Tony’s back teeth was missing. I know this is a recent development, because two weeks ago I got a good visualization of that area while we were doing habilitation work with dental tools. Needless to say, we obviously had to head into the dentist as quickly as we could. The verdict was that this was caused by a cavity, I personally think he probably bit down on something hard like an unpopped popcorn kernel and broke the weakened area out, because I do know it was visually there a couple of weeks ago, as mentioned.
And now, we have an upcoming anesthesia-based procedure to prepare for because this is a tooth that is scheduled to fall out within the next year anyways, so they’re planning an extraction.
So much has been whirling around my mind for so long, and it’s hard to even know what to say about everything that is going on. To know how to write content that is relevant for other parents who may need it when so many people are dying, loosing their livelihoods, and really, really hurting right now. I like to keep it real, but as you know here at the quiet crisis next door, we’re kind of in Taylor’s boat that we “don’t love the drama,” but it sure as heck seems to love us. And real descriptions of what that looks like is not always easy reading for other people in crisis. And as a country, we might like to pretend otherwise because that feels easiest sometimes, but many of us have certainly been in crisis here for months.
My problems seem so small compared to what some are experiencing right now, and yet sometimes my heart still hurts because it thankfully has continued to beat on through it all. I wonder some how to bring meaningful therapy updates on services only getting telehealth right now when Tony refuses to wear anything but underwear in our home at this time because of how stressful the pandemic changes have been for him? I wonder how to speak to some of the deepest emotional wounds I have had to try and heal in way that won’t leave others feeling mauled in return?
Bandit resting moments after getting back home from the hospital.
Perhaps maybe soon I will be able to answer those questions. But for now, I’m not really even celebrating the holiday today. Bandit’s home from the hospital, but he and Hannah need as much support as I can give right now. Tony is dealing with tooth pain and will be for nearly a month until his scheduled procedure, and needing support with procedure preparation. For anyone able to tolerate typical dental procedures, this would have been fixed the same day, but that’s not how it works if your loved one needs sedation or anesthesia.
I do, however, celebrate each of the ones I love in my heart. I celebrate that you are, with me, able to read the words on this page…and my hope is for each of you to be able to find some moments of rest or joy in your days ahead in the midst of what could be a month of deepening darkness for our nation.
When I was a little girl, I used to eagerly look forward to Christmas. Holidays where gifts were given were one of the few times I got toys or anything new that felt special or exciting. And even then, because my parents were pretty darn poor, my grandparents and great aunts and uncles often still gave me more mundane (albeit useful/necessary) items such as socks and sweaters.
I am now at my 44th Christmas, and the gifts that bring light to my heart now are the warm and loving relationships in my life. The tender kindness of a friend who sought to leave cheer on my doorstep in the early evening hours. The thoughtfulness of my sweetheart of many happy years now bringing me home a bundle of flowers because he knows I love them- but never so much as I love him. A friend who loved me enough to call, and then showed she loved me even more by letting me get back to a rare Christmas Eve nap.
You know, we all have different things that help us feel loved during the holidays, and that can certainly change over time (Hannah for instance, wanted spending money to shop for herself this year and that’s perfectly ok!). However we handle those sorts of things, many of us still do have a common bond of gift giving and accepting at Christmas time. But not all of us want that.
I am often asked what Tony would like for Christmas, or what we are getting him. And the truth is, Tony doesn’t really want gifts. Sometimes I feel like I’m giving him things just because it’s a tradition that everyone expects. For all of the ways we ask Tony to accept changes and things he doesn’t want, sometimes I think acceptance from us needs to be a gift we give in return.
The minions and the blanket are part of Tony’s gifts, and I’m not wrapping them because he’d prefer that.
Acceptance that he doesn’t really want all of this stuff. If he had his wish, almost all of his toys (therapy or otherwise) would vanish into a donation box and never come back. Acceptance that he doesn’t like removing wrapping paper and he doesn’t see the point in using gift bags. Acceptance that he really feels overwhelmed by lots of gifts at the holidays. Acceptance that he knows if he really wants something, we’ll get it for him anyways and he only has to ask.
But of course, I am going to hang on to each therapy toy for as long as they are needed because I have a long term view of the ways those could certainly benefit him. But I ask for each of you this year in Tony’s extended family to give him and any other individual on the Autism spectrum who may be feeling the same way he does the gift of acceptance. Accepting that sometimes, we don’t need to ask Tony to change his personal feelings or wants about and during the holidays to fit in with anybody’s personal traditions, to help him feel like we accept that it’s ok for him to not personally enjoy the same things.
Acceptance that some day, he may express a wish to not even personally celebrate Christmas at all for himself. He does really like to look at the lights, but that may be the only thing he ever really develops an affection for when it comes to this or any other holiday that comes with such displays.
And, just a brief note before I officially wrap this post up, to keep my holiday schedule more flexible, next week’s post will also go up on a Thursday (though a bit earlier in the day), and then I’ll be returning to Friday posts the week after.
I wish each and every one of you a happy day tomorrow…whatever that means or looks like to you personally.
Some changes aren’t welcome even with lots of explanations and warnings in advance- like wearing coats when it’s colder- so we tend to like sweatshirts quite a lot because a plan B for when prep work doesn’t help is always a good idea. Photos by Ariana
Miss Dee (Tony’s first occupational therapist) and I had been talking several years ago during one of his initial appointments, both about things that I had observed and things that she observed with our son. She looked at me and said something to the effect of, “So he really struggles with transitions.” I agreed but I honestly I didn’t have a background that involved any education or training in therapeutic techniques for this type of challenge.
She recommended that I make several photo albums for places we went frequently or of people we saw on a regular basis. For places like their clinic, she recommended pictures of as many steps as possible. She advised me to talk him through the book before we left and once again in the parking lot. We had the clinic’s picture in it, Miss Dee, the receptionist, the play table, the lobby, and one of the back therapy rooms. I still actually have that book buried in a box somewhere, but for the simplicity of my schedule and to allow a bit of time for more important things, I opted not to hunt it down to illustrate this post.
This became the model for how I approach any sort of transition, although some transitions (like a therapist taking a different job elsewhere) can’t really be photographed that way in advance and have to be verbally talked about frequently. I usually begin prepping him for that kind of change as soon as I know it is going to occur, because often he needs a good two to three weeks to process something he feels very emotional about without resorting to brief but dramatic escalations in self-harming to help him cope.
This pandemic has brought so many challenges with it, but for Tony one of the harder aspects has been that things are constantly changing, often without much notice. Clinics closing, some therapies only occurring via telehealth, huge chunks of his routine constantly mutating and undergoing massive reconstructions. And, on top of all of that we’ve been on quarantine multiple times, and every time this upends his world for a couple of weeks with close to zero chance to help him transition.
I have handled helping him prepare for everything I could by building as much of a framework as I could for him to frequently visualize what would be happening as far in advance as I could. But still we have seen far more change over the past nine months than any other period in his life, and that has been very hard for him emotionally. The stability of his routine helps him feel emotionally safe, and this much volatility is hard for him to navigate. For some things, like Emily leaving as his habilitative therapist, I also made sure that as soon as I knew she was applying for other jobs, I structured my therapy time with him to the schedule I would be able to maintain after she was gone so that he wasn’t having to adjust to another schedule change and fully process an emotional loss at the exact same time.
Sometimes a good distraction helps make unpleasant things easier, such as a preferred activity….
As I was thinking about all of these changes, I realized I may need to add a new approach to augment our efforts to help him transition through changes and activities. I started telling him about two months ago that really in life the only real routine was change. Change is the one thing each of us can count on that is always going to be there, and that even though it was hard, he was going to become King of the Changes. Because he would just always have to know that change was going to happen often and he wasn’t going to let it get the best of him. Even if he doesn’t like changes, he can accept them by expecting that they are the only real routine.
…But not always. Sometimes he’s still just going to feel unhappy about it and that has to be respected (even if I had to pull out the mom card and tell him the jacket stays on if he wants to walk outside) because he has a right to his feelings about what he’s going through.
I was telling him that again last night and he was saying to me “Oh, yeah. Yeah. Yeah.” Although our son is considered non-verbal, he still does make verbal affirmations and negations (with an occasional head shake or nod for emphasis). I am certain he understands what I am saying, though I am sure at many points he really wishes that wasn’t the way it was- and he definitely hasn’t hit the point where he likes it.
And sometimes, it has to be remembered even by our little man that not every change is bad. Two weeks into our transition for loosing Miss Emily as a hab therapist, she offered to cover a few hours with a different agency in her spare time. Even Tony could agree that change was pretty sweet. We still need someone to fill most of his hab hours, but he loves Emily and thinks of her as part of the family. I in turn, aside from having the honor of being one of Emily’s friends, am aware of what a blessing it is to have someone working with us for any amount of time who genuinely loves our son and cares deeply about helping him gain important safety skills.
And, this particular change also demonstrated that even for Tony some transitions are easier to accept than others. He laughed with joy when I was talking about the arrangements with Emily on the phone, though he did indicate to me on his AAC device that he wanted all of the original hours back. I told him that couldn’t happen, but he was till happier.
We had a speaker phone meeting with his DDD support services coordinator (Miss J), during which we discussed getting the authorization for those hours in place with the other agency for Emily. Later in the night Tony woke up to use the restroom. I went back to to my room after helping him and heard him say on his AAC device via our safety monitor, “Thank you, Miss J.” And then he went back to sleep.
Perhaps that seems random, but our son pretty much never thanks anybody independently (he also never talks about Miss J unless he’s greeting her for a meeting) and he processes his thoughts about things at his own pace and in his own way. For him this was a change that made him happy and that’s a big deal. Many changes are still hard, but our some day King of the Changes is grateful for some of them, and I am too.
Tony using an AAC app with his vocab transferred to the iPad mini I had purchased for his educational apps after his AAC device of nearly five years died before his new one arrived this summer. Dead AAC device in the background because he wanted it on the table still. Photo by Ariana
Earlier this week I submitted comments to the Division of Developmental Disabilities as part of a legally mandated public comment period for proposed changes to the policy that governs prior authorization for assistive speech device technology, or AAC. For a while now my posting schedule has been every Friday, however I felt like for those of you who are local and who could be considered a potentially concerned party when it comes to these changes, I felt like a reminder may be beneficial that the deadline for closing comment submissions on these proposed changes is two days away. And you also have my commitment to not write anything else this Friday to compensate for this extra chunk of reading, but instead to return with my next post the Friday after.
I also believe it is important for me to share with each of you my impression that some of the changes proposed could potentially increase costs to tax payers as well as increasing the number of barriers in addition to the amount of time needed for developmentally disabled individuals to navigate the prior authorization process and obtain a speech device. I also personally have additional concerns that some of the language and proposed changes could be considered discriminatory.
The proposed policy changes can be found here under the “policies open for public comment” tab, and there is also a comments submission tab for those who are interested.
Below I have shared the thoughts and comments I submitted. The Division has stated that they prefer comments be submitted directly to them, and while I have done so, I am also choosing to make them more public because I believe it is important for each of you to know about this process and what is going on with it. I encourage any concerned party to read the proposed policy and present your own thoughts to the Division, which of course may be entirely different from mine.
My name is Ariana and I am the mom of a beautiful non-verbal boy that we adopted from foster care who presents with multiple developmental disabilities and has used AAC technology as his primary form of communication since he was 3. His current list of conditions includes FASD, Sotos Syndrome, Trisomy 5Q, Level 3 Autism, ADHD, Mixed Receptive-Expressive Language Disorder, Sensory Modulation Disorder, and Intellectual Disability. I am commenting on suggested changes to the AAC prior authorization process and proposed changes to who administers these benefits.
Before I make my comments I would like you to imagine for a moment that you are a prisoner to deficits in the ability to control your own muscles that prevent you from talking. You know what you want, you understand what you want, but you can’t write it. You can’t say it. You don’t have enough control over your muscles to use sign language. And because of this, everyone treats you like you don’t understand anything. But you do.
How would you feel? How would you act? I imagine you might act like our son, who spent most of every day prior to the introduction of the use of PECS screaming, throwing tantrums, and trying to self-harm. Just the ability to show us a picture of what he wanted changed our son’s behavior overnight, and the introduction of the AAC device expanded his ability to communicate with us and others has done so even more.
My primary concern- regardless of who is overseeing the authorization process- is the length of time it can take to navigate this process. When our son’s first AAC device began to malfunction after nearly four years of use, we submitted an application for prior authorization for a new AAC evaluation. This was done on May 16, 2019. We finally received the device on June 26, 2020 after an unnecessarily arduous process that included filing multiple appeals, grievances, and the ultimate involvement of both the Arizona Center for Disability Law and the Arizona Center for Law in the Public Interest. Please note, our family’s primary insurance actually paid for most of the cost of this new device (4/5’s of the cost), with DDD paying the remaining 1/5. All of that was capped off by receiving a letter from DDD after the device was ordered (but before it was shipped) stating that they were going to take an extra couple of weeks to review whether or not they were going to pay, and that this review was in our son’s best interest. Unfortunately I must emphatically disagree- very little of what we experienced in that process was in his best interest.
I am going to review my additional concerns line by line, but I am going to preface those remarks by stating that I feel certain pieces of the proposed policy will create additional delays in providing access to AAC technology to those who need it most, which delays would result in reduced abilities to communicate and decreased progress, and that some of the requirements may have a disproportionately negative impact on individuals with more severe forms of Autism or whose disabilities come with more severe sensory symptoms.
I note that starting in line 155 the policy begins discussing medical records and document submission requirements for AAC authorization packets. During our application process, I made multiple re-submissions of documents that the Division had already been provided previously at the request of the Division as part of the application process. I believe that years of progress notes and other documents already on file with the Division and ALTCS should not be required from the family as part of the application process.
In some of the denial verbiage we received, we were told that sufficient documentation for medical necessity didn’t exist for our son. I am intimately aware of all of the documentation that exists for our son, and I assure you that it is painfully copious and sufficiently specific to stand up in court. Families of loved ones with disabilities should be able to expect that Division employees or other utilization review specialists who are reviewing these documents have sufficient understanding of what meets the legal standard for medical necessity when they are reviewing these documents, but I myself unfortunately am not sure based on my own experience that these documents are always being reviewed by an individual with the appropriate level of training and understanding.
When timeliness standards are discussed starting at line 169, I believe that an application and approval process that stretches more than a year should not be considered timely. I believe that three to four months from the application filing to the device being ordered for a new device application process is better suited to meeting the needs of individuals dependent on AAC technology for their communication needs.
In line 223 when discussing medical necessity, I feel that this definition needs to make clear that the medicaid standard for providing these services recognizes the benefit in doing so for improving the functional limitations of a disability. AAC may not be considered “necessary to treat” on a subjective level to some for anyone non-verbal as it is stated in this proposed policy revision. However, the improved quality of life, improved functional outcomes, improved ability to communicate, improved behavior, and improved independence definitely should be considered “reasonable,” beneficial, and efficacious in improving the outcomes for those with medically confirmed deficits of spoken or written communication that can be improved with the use of AAC.
For the equipment that can be covered as part of an AAC authorization starting at line 231, I note that protective cases are not listed. Protective cases are relatively cheap (compared to a repair or replacement) but can dramatically extend the life of a device by protecting them during unplanned falls or other such accidents. I believe it is imperative to add this as a benefit as it is cheaper to the Division and ALTCS than frequent repairs to an uncased and unprotected AAC device. I also note that many devices automatically update using Wi-Fi, and that approval of Wi-Fi enabled devices is necessary as it is the standard in that field currently because it is the standard for current technologies.
I believe that requiring an additional comprehensive speech evaluation is a waste of Division, ALTCS, and tax payer money as proposed starting in line 270. For our son, he had a comprehensive evaluation less than a year before his most recent AAC application was submitted. As part of the initial denial, the Division requested yet another comprehensive evaluation before considering approval. When an initial evaluation has been done, in combination with ongoing progress notes submitted by the acting speech therapist, additional evaluations simply add unnecessary costs and delays to this process.
In regards to demonstrating the viability of using AAC technology with a three month trial of over three devices, which is referenced starting at line 289 and then again at multiple points throughout the proposed policy change, I believe that this recommendation is redundant, costly, and imposes unnecessary delays in providing permanent access to communication for individuals that benefit from AAC technology. Part of the current AAC evaluation and recommendation process is that the AAC evaluator brings out multiple devices and software options to try with the individual at the time of evaluation. The observations and recommendations of that evaluator should be sufficient. I also note that when a data-driven AAC device system is stated as being required in this proposed policy, there is no corresponding explanation of who is supposed to be taking the data or what type of data is required or considered acceptable.
I must note that throughout our son’s life, and throughout the recent application process, I have been asked by many people outside of his therapy team based strictly on the list of conditions our son has if he actually functionally uses his device. In fact, I had started taking videos of him doing just that in preparation for meeting the Division in a court of law over the most recent AAC application process. I was almost disappointed I didn’t have the opportunity to play those in front of a judge by the time we actually received our son’s device, to be quite honest, because it is that gratifying to watch people react to what he can actually do in comparison to what their assumptions are. The determination of viability for AAC should be entrusted to the speech providers who have actually been working with the individuals and not utilization review specialists who may not be reading all of the necessary progress notes but may be making snap judgment about what they think is viable based on a diagnosis or a whole list of them.
I also note that the cost of maintaining loner devices in a quantity sufficient to meet the needs for running trials for all individuals in a timely manner who may be applying for AAC within the state would be unnecessary and prohibitive for the Division. And, the process of getting them, using them, and documenting them could take several months, which adds a further unnecessary delay in the receipt of these services. I also note that for many individuals with communication disorders significant enough to require AAC, learning multiple systems in such a relatively short period of time, which would be required for this kind of thirty day multiple device trial, is contraindicated by my understanding of what best practice is currently for speech therapy for these individuals. I also believe it would be unnecessarily confusing for these developmentally disabled individuals, which could ultimately result in reduced communication or communication rejection for a period of time.
I also note that I think it is imperative to allow for the submission of an AAC evaluation based on the evaluators observing competence using PECS communication. When our son was first evaluated at age three, he was so scared of the evaluators that he screamed and hid any time they approached him. He also was afraid to touch new things. They ended up watching him use his PECS book that I had made for him while he and I were sitting in the kitchen and they were observing over the counter where he couldn’t see them. Based on this, they picked some TouchChat vocabularies to try with him and gave me the device to work with him in a like manner while they observed unseen by him.
When we got that first AAC device at age 3, my son learned how to ask for all of his favorite foods independently after one day instruction from me. One. But he never would have had the chance if he was required to interact directly with AAC evaluators he was terrified of because they were strangers to him and demonstrate proficiency on a new device he was scared of touching for nearly two hours.
I would also like to note that I object to the phrasing of “unaided forms (natural modes) of communication” as it appears in lines 268-269. For items that our son wants to communicate about on his AAC, such as his requests for items he wants, that isn’t “aided” in a manner that renders his communication less valid or spontaneous. Yes, our son uses a device to express those wants, but it’s kind of like me saying when I communicate using speech I’m aided by my mouth and vocal cords or I’m aided by my hands if I use ASL. Technically, all forms of communication are aided by something, many of us are just blessed to have a fully functioning body that does so. But if something happens to my vocal chords, I wouldn’t be able to speak but I could still produce spontaneous thought and therefore spontaneous communications via other means.
As relates to lines 368-371, often a family and their practitioners/providers may be unable to anticipate projected changes to a member’s communication abilities that are three years in advance. Nobody has found a crystal ball of that kind that works, and if they did, we wouldn’t have had to get two rounds of genetic testing for our son, who was diagnosed with five of his current diagnoses after his initial AAC evaluation. For many of the developmentally disabled, they and their families are on an ongoing journey of discovery and this requirement is not really possible for anyone to guarantee a projection on- especially if something unforeseen happens like a brain tumor or onset of seizures.
I find the verbiage in lines 435-440 to be concerning as regards to the statement that the AAC must “improve or maintain the member’s health in the best condition possible, compensate for a health problem, prevent it from worsening, or prevent the development of additional health problems…” Please be advised that my son currently is healthy in the sense that his physical body doesn’t have a condition we would associate with chronic or acute illness in the medical community, and AAC technology isn’t specifically designated as a treatment for that kind of health-related concern outside of allowing an individual to tell someone when they have an earache, etc. AAC improves the functional limits of many developmental disabilities and communication-related disorders by allowing them to communicate more and more accurately, and as such may provide mental health benefits (which are often hard to measure outside of observed behaviors) and may certainly result in an improved quality of life for disabled individuals and their family members. However, the inclusion of the proposed language is a red-flag to me as a parent that this policy could be used to create a standard for authorization that is not consistent with Federal Medicaid laws governing the approval and use of AAC technology.
In regards to prior-authorization for AAC repairs, with line 457, why is justification of medical necessity required here when it was already required to receive the original AAC device in the first place? This creates unnecessary steps for documentation and is an area of potential delays in care and receipt of services. And for lines 471-472, I am not sure why it is necessary to detail what measures are being taken to prevent recurrences of device damage. Accidents that damage a device are by nature unforeseen. Even the most cautious of parents and providers can not prevent all possible events that could damage an AAC device. I think such verbiage could be a requirement if more than one repair per year were needed, but otherwise this seems like an unnecessary step for everyone involved.
I note that starting in lines 480, the amount of hours being proposed for AAC device training is going to be reduced from 12 to 4. I feel like this reduction is not in the best interest of most families and the developmentally disabled end users of these devices, who may continue to benefit from the original (and current) policy provision of 12 hours of training and device customization assistance.
In regards to lines 499-501, why is it necessary here for the device trainer or SLP to document that the member can use the device safely, etc when that is already required to be established during an AAC evaluation itself as part of the application process? Further, if the proposed device trial is implemented as proposed (and I again state that we feel this proposed multiple device trial is problematic on multiple levels) this step is again unnecessary and redundant.
I am also concerned about the use of the phrase “might justify the need for an AAC system” in lines 543-546. If a member has demonstrated the existence of medical conditions and diagnoses that present with limited verbal communication, please note that federal law currently asserts and supports that AAC technology is beneficial and therefore justified for these individuals as it increases their ability to communicate with others.
In regards to lines 595-597, I would like to note that for most individuals, sticking to a PECS only book limits their access to communication by limiting the amount of words they can effectively use. The size of a book that could contain the amount of vocab equivalent to AAC software would be prohibitive to use and maintain, and extremely cumbersome to use. Imagine that you had to hunt for a picture for every word in the dictionary, and that you had to have a book that could contain a picture for all of those words. That’s not very practical for most people, even non-verbal individuals. I know some people look at my son and think his communication needs are simple because he only wants to talk right now about what he wants. But let me assure you, he wants a whole lot of things and he’s quite specific about them. I am also concerned about the vagueness in regards to what kind of documentation is acceptable. At the time of our recent application, we were told that there wasn’t sufficient documentation that other methods of communication had been tried for Tony, and yet years of progress notes existed, many of which detailed that he doesn’t have the motor planning for sign language and that PECS had already been tried and his communication needs had surpassed that system.
I wonder what is exactly meant by “a description of the member’s cognitive readiness” in line 603? Many people think our son shouldn’t be ready to do anything cognitively, and yet he can do a whole lot more than people assume based on looking at his list of diagnoses. I feel like his is a requirement that is based on a subjective set of opinions and could be used to arbitrarily discriminate.
I strongly object to the proposed provisions in lines 611-612 regarding behaviors and aggression. Plenty of verbal adults and children are aggressive, and nobody denies them access to communication because of that. I feel like this is discriminatory language, and as a parent of a kiddo who actually isn’t aggressive I’m outraged that this was even included. Our son has plenty of behaviors such as self-harming and throwing things away from others when he’s angry, but please note I watch him carefully with his devices because of that and his first AAC device lasted nearly five years before it died. Our typically functioning daughter at a similar age fried her kindle by dropping it into a bathtub after having it only a few months. Behaviors and disabilities don’t mean that device destruction is eminent, and I don’t think they should be used to exclude certain groups within the developmentally disabled community. Our son actually has fewer behaviors because he has an AAC device to communicate with because it allows him to communicate quicker and easier than PECS.
I fail to see why the communication partners is a relevant matter as listed in lines 633-636. Our son has always communicated more when strangers or people he was less familiar with weren’t around. Which is why I started taking videos for a possible lawsuit. For many Autistic individuals this is always going to be the case. Once he has known a therapist for several months, he will talk more with them and around them, but that relationship takes longer to establish than an AAC evaluation can provide.
And, again, in regards to lines 637-640, most families start with PECS before their speech therapist recommends AAC. If an individual can intentionally communicate using PECS, they can intentionally communicate using AAC, though it may take a bit of a learning curve to master use of the new device. I feel like this step is unnecessary in light of the fact that current AAC evaluations are supposed to assess for the ability to use the device intentionally and an individual who has demonstrated the ability to functionally use PECS can also learn to functionally use AAC. I feel like this requirement may impose an unnecessary barrier to children who struggle to learn new systems effectively in either a two hour AAC evaluation or the proposed 30 day trial period (and again I do not support that trial period), but who may still none-the-less be able to learn them over a slightly longer period of time and then use AAC successfully over the course of a lifetime.
And I think that’s actually everything. I know my thoughts on this policy were nearly as long as the proposed policy and I thank you for taking the time to sift through them. I wish you health, safety, and a fabulous day!
You and I both cried the last day our son worked with you. Over the months you worked with our family, you were a kind and encouraging presence as we began our journey of finding out what could be causing his symptoms and emerging developmental delays. To this day I remain grateful for your indefatigable patience with him as he screamed, tried to self-harm, and refused to interact with you for most of our sessions. And after several months, near the end of our time with you as one of his therapists, such a beautiful break through when you became the first person outside of our family that our son let touch him with any degree of calm.
When he was diagnosed with Sensory Modulation Disorder, you were the one who directed me to some initial resources to help me understand and better provide support to him at home. You never flinched away from his more dramatic symptoms, and I will never forget your kindness and refusal to judge when Tony was experiencing a sensory overload and vomited all over the carpet in your lobby. I am incredibly thankful that you worked with our private insurance to continue paying for his sessions after we exhausted his annual benefits over the months we were waiting to get his therapies approved and covered by DDD and AZEIP, funding sources your organization didn’t accept. And you went above and beyond by listening to me patiently as I detailed the medical dramas I was going through at the time. Years have being flipping past us, but I have certainly not forgotten you or everything you did, and I will always deeply appreciate every last bit of it.
Some Reading To Consider
No Time Like The Future: An Optimist Considers Mortality, by Michael J. Fox
I am going to be honest and admit that I was originally going to recommend a bit of a darker read this month, but as I look at the COVID infection and death numbers continuing to rise I find that I don’t have it in me to ask anyone to step out of any sort of light right now, even if the illusion of that light exists because the experiences of another remain unknown. So this week, I am going to recommend the writings of a self-professed optimist, whose health challenges over the last few years have caused him to embrace a degree of realism that led to a need to ultimately reconcile the two positions by experiencing an awareness of gratitude.
Having read this book, what is most striking to me is the difference between Michael J. Fox’s experience as a disabled person and what might be the experiences of someone without that degree of fame and income. Acting jobs were written with his challenges in mind. He had immediate access to the best doctors and therapists. He needs to use a wheelchair for a period of time and the building he inhabits installs a ramp without him having to fight for it being placed there. I really don’t wish to belabor the point because that is what I would want for everybody and I don’t begrudge him or anyone else that. But as I read it, I am still aware that this is not the universal experience for many individuals with disability and I see a vision of what our society could look like if we valued the person more than the function in each of us. And I see a hoped for vision that some day disability might not mean an unnecessarily diminished life experience.
A couple elements that I particularly appreciated in his writing were his description of what happened when his sense of proprioception was temporarily impaired after a spinal surgery. I think this is something that I wish everyone could read and understand as it relates to the difficulties individuals with sensory processing disorder or Autism, who often have proprioceptive dysfunction of some kind, and experience this as an ongoing state of being. And I really loved the quote he shared from his father-in-law that “with gratitude, optimism becomes sustainable,” and that Mr. Fox emphasizes that he can appreciate the good things he has because the bad things have put them in “sharp relief.” I love that he focuses on thinking about the past “for wisdom and experience, not for regret or shame.” Sometimes it is really hard in any circumstances in life to find that kind of equilibrium, and in reading this I found myself hoping to learn how to better internalize and balance those two elements in my own life…and I recommend this as a possible read to each of you for all of that and more.
One More Brief Note:
I know there are differing perspectives within our communities for how to live life within a pandemic. I personally am not going anywhere unnecessary and that is the philosophy I am living by, but for those who have a different comfort level for risk right now, I am going to note that Ballet Arizona this year is hosting a sensory-friendly version of the Nutcracker. These performances will have limited seating to respect mitigation measures for reducing the spread of COVID. I am going to be assuming masks will be mandatory, and indeed I note that the CDC today recommended universal mask wearing at this time for all citizens in its weekly updates about the pandemic.
For me, I have mixed feelings about putting up notice of these shows because of the pandemic. On the one hand, I am concerned about any unnecessary gathering right now leading to spread that could increase strain on our already heavily burdened health care facilities, but I also know how important these traditions can be for younger individuals in particular. Ultimately I decided I also thought it was worth celebrating that this organization has started producing shows for individuals with sensory differences and I hope this continues on a grander scale after the pandemic ends. That part definitely has me mentally skipping through a meadow of purple wildflowers! I wish each of you a safe and healthy week <3 Ari
Screenshots from a Ballet AZ e-mail and the CDC respectively.
We have been working on helping Tony develop hand strength to open the front door for a few years now, and finally, all of that painstaking work is paying off. Photos by Ariana
A couple of years ago, I was driving Tony to one of his many therapy appointments. As I pulled to a corner of an exit ramp, I lowered my window and held out some cash to a gentleman standing at the corner with a sign. He quickly met my eyes and then looked down, back at Tony, and then briefly at me again as he said, “I can’t take this. Not from you. Keep it for him.”
When I was in high school, there was a girl in one of my classes who came from a much wealthier family than mine. She and I got into a spirited (ok, slightly heated) debate one period in particular after she made several statements about how lazy homeless people are, and that if they just tried to clean themselves up in a bathroom or something like that and tried to get a job she was sure they wouldn’t be in the position they were in.
This is I think a narrative many people tell themselves, an explanation that makes it easier to look away. And unfortunately, it is a tale that ignores some hard realities: our homeless population is a varied group that includes in it’s ranks military veterans suffering from PTSD or other untreated conditions, women fleeing domestic violence, LGBTQIA youth kicked out of their homes, individuals with mental illness, and the developmentally disabled.
You see, I had seen that gentleman around before. I had noted him in particular one afternoon at a gas station I was stopped at while I was waiting to pull up to a pump, and I had seen in him some of the same things he probably recognized in my son, who is often rocking or flapping in our backseat: signs of a neurodevelopmental disorder- though his impairments clearly were not as severe as Tony’s. He had fallen through somebody’s cracks, and when I looked at him, I honestly unfortunately saw one possible future path for our son in the absence of fearless and seemingly near constant advocation. And I think this gentleman obviously did too.
As I see it, the “safety net” in our communities is not big enough to meet the needs of everyone who actually qualifies for that kind of help or support and keep them off the streets. And part of the fault for that lies with us, as the voters and residents of our communities. We have prioritized other things, and we have looked away- and in so doing some of us have told ourselves whatever myths we needed to sooth our consciences and make the experience more palatable.
I shared some of my thoughts last year about the need for increased funding in Arizona for the developmentally disabled. Those needs remain unchanged, in fact, they continue to grow as health care costs continue to rise. To me, it seems that it is not enough to say that we value the right for every life to be born for those of us that do. I think that if we say that, we need to honor an effort to give everyone born some basic quality of life once they get here.
While I would wish for every person born an equal opportunity for growth, learning, love, and adequate sustenance, at the very least I would hope that in a country overall as wealthy as the USA we could provide for a humane way to keep our most vulnerable populations off the streets.
Sometimes he needs both hands and we had to work a bit at helping him learn how to do that also, because the thumb latch often sticks, and more strength is required to open the door when it does.
The current delivery system to the developmentally disabled in Arizona pays certain providers less than they can get at clinics that accept traditional private insurances only. And generally, these therapies increase capabilities enough to bring a long-term return on investment in lowering costs of future care even if they don’t result in complete independence.
And last year at the DDD rate forums, I listened to multiple group home administrators state that the amounts they were getting reimbursed wasn’t enough to cover the cost of services they were providing and some of them mentioned that they were beginning to shift their client based away from state-reimbursed care of the developmentally disabled. What will happen if those homes one-by-one end up having to do just that because they can’t financially survive and continue providing care to the individuals they serve? Where will those individuals go, and…will we look away?
My hope is that we will not- that even those of us who aren’t the parents of a developmentally disabled individual will recognize and vocally support the need for increased funding to these services here in the great state of Arizona or wherever else we may live.
Practicing mask wearing when we approach others during community safety, just me and Tony, so not clocked in and covering official hab hours. All photos by Ariana
Much of my time feels like it’s not really my own right now- paid or unpaid- so I’m going to keep my words and explanations here as stripped down as possible.. A question could be posed after reading last week’s post: why would being a temporary direct care worker covering our son’s habilitation hours increase the amount of therapy work I personally need to do with him?
The quickest answer is Article 9, which is a law in Arizona that governs what kinds of therapeutic techniques can be used with individuals with developmental disabilities and under what circumstances. Under Article 9 for example, when a habilitative therapist being paid by DDD is working with our son and he tries to run in front of a car, they are allowed to say “stop” or offer him a reward to change his action, but they cannot physically block him. Eloping is a common behavior with conditions that come with impaired impulse control, such as our son’s Autism, ADHD, Sotos Syndrome, and FASD. Our kiddo also has heavily impaired risk assessment that is very slowly improving, but is still well below what you would expect to see for a child a quarter of his age.
I am sure everybody here agrees that somebody needs to physically block or stop Tony from running in front of a car if that’s what he’s trying to do. And up until very recently, he wouldn’t respond to a verbal “stop” in any eloping situation for anybody asking him to, whether it would have resulted in physical harm to him or not. Obviously we can’t stick with just a “stop” under the circumstances when a moving car is involved.
Practicing hand holding on streets with more traffic
We also are working on teaching him to request permission before sitting on the sidewalk, important in the summer
Now, there is a process of getting that kind of physical blocking approved through a review committee at DDD that involves continued, ongoing reviews that this type of technique is necessary and obtaining a therapist extra certifications and training to provide that level of support…which I am sure also requires said therapist to be paid more. I was personally never approached by either DDD or Tony’s clinical supervision team about going through this process for him, I was simply just told some years back that clinical supervision would not approve for anybody to work in public with Tony without me until he could respond with 100% compliance to a verbal “stop” from anybody.
And I will tell you, I have absolutely always agreed with that decision regardless of what kind of training a therapist has. I would not ever want to make anyone else responsible for that. So I have been the designated blocker for all activities that require that level of support. But, because of Article 9, even though I am Tony’s mom, if I am clocked in as the temporary habilitative provider, I can’t block…so Andy has to come along, or I have to not be clocked in and doing these therapies by myself.
Andy ready to block street side if needed
Tony often wants to run towards sprinklers or broken drip heads that spray out more water
So unpaid by DDD and doing community safety by myself is what I end up doing most of the week right now. Consistent community safety practice is crucial to helping our little man gain skills to function safely anywhere, and right now with the temperatures lowering, we’re doing about four hours a day of this therapy program. I have long said this privately, but the bald truth here is that it won’t matter what Tony knows how to do if he can’t function safely enough in public for people to give him the opportunity to do it.
And while much of this practice would have been done with Emily during hab, I, in covering those hours most days, can’t clock in and use the hab hours because Andy isn’t available to provide blocking support. I also can’t give Tony his prescribed medications when clocked in, so I have to clock out in the afternoon when he needs his ADHD medication.
Just Tony and I passing a sprinkler, and he did what I asked when I told him to stay out of their yard! 🙂
What we have been seeing is a slow emergence of willingness to stop during eloping for me when I call out a verbal request, that on good days can be as high as 75% of requests complied with. Obviously, we can’t test this out with an attempted run into the street right now, but are working on it when he tries to run towards less potentially dangerous areas. And, sometimes we have to block when he’s trying to go into someone’s yard also, because people can get pretty grumpy if an impulse control challenged kiddo messes with their stuff (and rightfully so).
We have been told that soon DDD will be ending the temporary direct care worker program, that extra federal funding allowed them to offer this option during the pandemic only and that this extra funding expires soon. I personally give the opinion that I think this is an excuse…because if an individual meets medical necessity for habilitation and looses their therapist under any circumstances, that need and the ability to pay a parent to fill in while another therapist can be found should be there regardless…right?
Unless of course, the state legislature isn’t budgeting enough money annually to pay a competitive wage for DDD funded therapists or to meet the actual therapy needs of all the developmentally disabled individuals they serve.
So, although I and many other parents recently recommended a continuation of this program due to ongoing struggles in finding hab therapists for our loved ones, based on what we have heard soon I may be doing all of this therapy work for free. We still don’t have a therapist who can take over any of those hab hours, but I guess that would at least make my schedule simpler.
November started with me plucking crayons like petals from a Ziploc bag, handing only one at a time to Tony, who colored an image of marigolds in short bursts while I talked to him about Dia de los Muertos. Coloring marigolds seemed more suited to our son’s current fine motor abilities than sugar skulls, which often display more intricate and tightly lined designs.
He watched me as I put pictures and treats for loved ones- some long gone- on our ofrenda. A small smile lifts his lips as his eyes, in a moment that is much more rare, connect to mine. He knows, because we have told him, that this is a newer tradition for us- one we celebrate since he joined our family because we would never try to erase (or prevent him access to) his rich cultural heritage.
The very next day I had to begin the painful process of helping Tony to understand why his beloved Miss Emily was applying for jobs elsewhere. Generally, turnover rate in habilitative therapy is quite high in Arizona because the pay can be shockingly low. We’ve been blessed to have her this long, and I am thankful to her for every second she has given us. And so woven into the daily schedule of therapy and infection control cleaning have been so many moments of shared mourning as I try and help him accept what is shortly coming to pass.
Tony
I tell our little man that he will be the King of the Changes, because the only routine he really can predict in life is that things will keep changing. Accepting change must be his new routine, as a continuing onslaught of pandemic related changes has unrelentingly continued to rip petals from our emotional stems and fling them into the raging wind of current events, where they continue fluttering away from us, only seen now in our memories.
I found small sheltered spaces in the joy of Hannah looking in the mirror, turning to me with a hug, and emphatically proclaiming “I love it!” after I cut her hair. In seeing the happy exuberance of playful moments between Tony and Andy while we were doing community safety together. My honey has needed to help me with some of the therapy targets on his days off because there are limitations to what I am allowed to do by myself when I am acting as a temporary direct care worker being funded by DDD. The necessity of abiding by these constraints has nearly doubled the amount of actual therapy work I have to do for Tony (which has definitely been hard on me) as I seek to protect his authorized hab hours for as long as I can in the hopes a replacement therapist can be found. Our son though has enjoyed having his papa along with us for these outings.
Having so many activities upended by our community’s high level of COVID spread brought an unexpected bright spot to me this past week, as Andy and I were able to cuddle up and watch Ballet Arizona’s latest offering digitally. I love being able to see performances in person when I can, but usually Andy has to stay home with our son, so it was a delicious thing to be able to view something current with him. And even better for me was that my honey actually enjoyed the performances. Usually ballet is something he puts up with because he loves me, and only because he loves me, and I am very grateful for that. <3
Pictures from November 7th, community safety (Tony getting tickles from his papa!) and my watching the ballet from home makeup.
The very next day I had to break yet even more difficult news to Tony: Miss Emily was given a job offer that payed so much more, and she had accepted it. Our little man said “uh-uh,” a wilder and pained look entering into his eyes. I have focused as many moments as I can on reminding him that Emily is still our friend, and we will still be seeing her in the future, even though working with us will no longer be her job. Some moments that comforts him, others I’m pretty sure he’d like to find a way to get her adopted into the family also. He agreed with a smile earlier this week that he was delaying returning home from community safety with us in the hopes that it would keep her from having to leave. But leave she must, and now we are only one week away from her last day.
Life is full of poignant moments, pulling subtle tones of contentment and peace, or vibrant hues of grief and joy from the fibers of our hearts, layering and sowing them into the current events ground around us where they bloom as they are. Sometimes the hardest task is in finding a way to be thankful even when the sadness wants to overwhelm the picture we are looking at. I have certainly spent plenty of moments watering those current events with tears this past week. But as I look at all of the moments surrounding me, I can still see a richness of happy moments and much to be thankful for.
Tony, 2015, the year Julie became his NMT therapist. Photo by Ariana
Julie, Tony’s First NMT Therapist
So many years have passed since we worked together, and though you ended up needing to take a different job elsewhere to meet the needs of your own growing family, our family will never forget what you contributed to Tony’s progress during that first year of music therapy. For your patience and kindness with him and with me, you have my ongoing gratitude. Our family was forever touched by your positive, encouraging attitude, and our son was forever touched by your belief in him and his ability to grow and move forward. Many Thanks!
To Heidi and Randi
The two of you will never know what your texts meant to me this past week. I, my sweet sisters-in-law, have been an emotional mess this week and to have the two of you contact me with such lavish praise for my makeup skills really helped me to pick myself up emotionally on a day where my heart was weighted down with grief and so much more. No, I’m not starting a YouTube channel for makeup, though I am flattered Randi thinks I could pull that off. And I am honored, Heidi, that you trust my advice enough to have asked me some thoughts on brands I use. Thank you, both, for asking me to teach you how I do what I do, and I thank you in advance for your patience as I pull something more private together to do that.
Andy and I with his sisters on the day we married in 2003, Ruth, Randi, Heidi, and Kathy
A General Note:
My dearest friends, family, loved ones, subscribers, and readers just checking in: Right now we are in a transition period where at some point in the near future I will be taking over even more of Tony’s habilitation therapy hours. What this means in at least the short-term and possibly the long-term is that I am going to be busier than I already am/was. Posts will remain shorter and with fewer pictures for a while as I will be devoting a bit of extra time to helping our family move through this transition period. I thank each of you for your patience and understanding with me as a writer and a mom at this time.
Some Reading and Viewing To Consider:
I am going to lump the first set of recommendations together as they share a similar theme:
Ten Arguments For Deleting Your Social Media Accounts Right Now, by Jaron Lanier
The central message for each of these recommendations is that you, as a user and consumer of social media, are not the actual customer for these platforms. The real customers, who are paying for advertisements or other content, are actually paying the social media platforms to not only engage you and your time, but to do so in a manner that is addictive and alters the way you think and act in a way that benefits the actual paying customers of the social media platforms. Which again, is not you.
Each of these works has pros and cons when it comes to presentation. Mr. Lanier is smart, the kind of smart that puts him in a stratosphere where he doesn’t have to engage with or care about what I personally think. And since I like that he mentions in his book that each of us should think critically about what he said, I encourage each of you to do the same, as I personally must note that there were some of his statements that I disagreed with. For example, he posits to a group of teenagers who ask him why they are here if AI is going to take away all of their jobs, leaving them with a “future [that] doesn’t need us…” that they “…must find meaning and optimism” and that “it is a duty not just to yourselves but to everyone.” I feel like his statements to them ignore everything that we know about learned helplessness. Because I am shorter on time right now, and I don’t feel it’s necessary for me to dissect every element where his views differ from mine for me to respect that this is still a worthy read to recommend, especially with our current events, I am going to leave my differences in opinion with that and move on.
What is incredibly important for you to note are his statements about the negative impacts social media can have on societies and civility as a whole, and that many in silicon valley will not allow their children to use social media. I think the same brilliant people who came up with the current model don’t need us to quit to fix the problems associated with it, they just simply wouldn’t have a financial motivation to do so otherwise. Unless, of course, more laws like Proposition 24 from California get passed which increases government regulation of how these platforms can use data they gather from their users…that might force change without people quitting or reducing their consumption of course. But his main point that each of us should be mindful of how we engage with social media is I think an important one to consider. Anyone seeking a condensed version of his thoughts may do best watching the NYT opinion video, clicking on the title above will give you a link to that.
The Social Dilemma is I think an important adjunct to this message, because Netflix brings in several of the architects of social media as we know it…and much of what they say overlaps and provides some additional context for Mr. Lanier’s views as expressed in his book. The downside is that there are short dramatized scenes interspersed with the interviews. I know in our household, those turned off some viewers. I personally felt like the interview segments presented sufficiently important information and perspectives for consideration to outweigh the cheesiness of the dramatizations.
We can choose how we engage with the world. We can choose to listen to what others need and what others are feeling and not let those differences threaten us. We can choose to react calmly and kindly when someone has different needs or beliefs. We can choose to prioritize truths over unfounded or unsubstantiated statements. Many of the contributors to my recommended reading on social media point to the ways in which engagement with these platforms has decreased the civility of our interactions and our receptiveness to differing points of view, but this article gives another vision, one in which we choose to listen to each other with empathy and improve the way we act with one another accordingly.
Me, the day these events happened. Photo by Ariana
I’m not going to say who left the cup of water by my laptop, or who knocked it over. Neither actions were done by me, but I don’t consider either of those actions to represent the biggest misfire in this chain of events. I will admit to swearing when I saw what happened, and for the record, I don’t consider that brief verbal reaction to be the biggest misfire here either.
The screen on my laptop immediately went black and then flashed up an error message stating that the solid state drive could not be found. Those of you who personally know me are aware that tech just isn’t really my thing, but even with my deficiencies in technological understanding I knew this had the potential to be pretty bad.
I ran upstairs and asked Andy for his help. He opened up the bottom of my laptop, saw where the water was, and began trying to dry it out. He looked up some stuff, reassembled the device, and still the same message. He told me a can of compressed air would be helpful, and though we haven’t used one in years, I knew where I had last seen it so I scrambled to bring it back.
He looked over his right shoulder at me as he was blowing out the area of the laptop with the solid state drive and he said, “One of the sources I read said that when this type of thing happens, most likely your files are gone and you should probably pray to whatever deity you look to.”
I assured him I already had been. While he was kneeling over the exposed backside of my computer, I was saying a few fervent and frantic prayers. Now, I am not about to preach anything religious to anybody. Your decisions about what you believe or whether or not you meditate or pray are entirely up to you. But for me, I definitely pray and in this case I felt like I had some good reason to. You see, I my friends, had not backed up the files on my laptop in a very long time.
I know.
Certainly it is embarrassing for me to have to even type that out. No judgment from me if you also fall into the camp of forgetting to regularly do that, but it is an important thing to do if you want to protect yourself from any number of unpleasant computer happenings. For me it was immediately clear that this was the biggest reason for concern in the entire chain of events. Yes, the cost of replacing the computer wouldn’t be thrilling if the whole thing had to be scrapped. If all we had to do was swap out the hard drive it probably wouldn’t even be that expensive to do. But some of the potentially wiped out files were irreplaceable and therefore the biggest source of my anxiety.
We plugged in an external hard drive before trying once again to power up my laptop, and the login screen appeared. We got a little bit over 90% of the files transferred before the screen once again blackened and flashed up the now familiar message about the solid state drive. I was relieved though, because all of the most important files had been recovered.
The next morning, we sat down for another attempt at transferring files with my then fully dried laptop. As Andy and I talked, I told him that really I considered the biggest mistake in all of this to have been mine. I mentioned that I was going to put in a weekly alarm on my phone to back up my files. I added that I know I am profoundly overwhelmed and there really isn’t any way for any one person to handle everything sitting on our to-do lists right now, but I didn’t want to make excuses for what happened or avoid trying to be better. And I felt like this was something significant I missed.
He said, “Because you want to take ‘extreme ownership,’ like Jocko.”
Exactly. Andy and I had watched that TEDx talk together a few weeks before this incident and I absolutely loved it. I have long felt something similar, that a problem I can’t acknowledge is within my scope of influence is a problem that will happen repeatedly and can end up be incredibly damaging to everyone I hold dear. To quote Jocko, “When a team takes ownership of its problems, the problems get solved.”
You see, as much as I love to pray every day I really don’t think prayer alone will or did solve this problem for me. My computer did indeed come up again that following morning and has stayed miraculously functioning ever since. Maybe it was prayer, maybe it was getting the water out of the inside as quickly as possible with the compressed air. Maybe, to quote Professor McGonagall’s character from one of the Harry Potter movies, it was “sheer dumb luck.” Whatever was responsible, no amount of prayer will protect me from this kind of mistake in the future if I don’t take the necessary effort to fix and change what I can for myself.
Sometimes I mess things up. I’m tired, I’m overwhelmed, and I’m very busy doing therapeutic things that many people think are foolish or a waste of time to try and help our son. For me it has always been a simple matter. Where I love, I give. And I love both of my children, they have never needed to have a certain level of functioning to earn that love from me. So I’m not here to debate the intelligence or merits of what we are attempting here therapy-wise with anybody who thinks differently, I’m here for other parents who may need some of the information I share. And who may need to see that I am also really struggling to hold everything together sometimes, and sometimes even making mistakes that have the potential to really, really suck for me.
I made a plan not to leave this particular important task unattended to again. I haven’t been shutting off that weekly “backup your files” alarm on my phone without acting. Yes, it’s one more thing for me to do, but if I’m honest I have a couple fluffy things I have been doing that I could do a little less of to find five minutes a week to fix this. I personally made the most harmful mistake in all of this, and I own that. I owned it to every one else whose actions contributed to the chain of events that left my laptop soggy. And I own it to you.
And, if you’re at all interested in watching that TEDx talk, I’m leaving a link below.
