This is just a quick note for my e-mail subscribers: there was a video and caption that lead into that post that was in the post that shows up on the website, but didn’t go out in the email version for some reason. It shows Tony typing “two,” you can go to the website itself if you want to see the video. Thanks for your patience 😀 Everyone else can continue on to this week’s actual post below…
Two And Beyond
You may be thinking that title doesn’t make much sense. Some things in life just don’t make sense, not to me, not to you. Or maybe something that seems sensible to you won’t seem that way to me or vice versa.
Our republican state legislators this week proposed future DDD funding measures in HB 2945 that limit the amount of hours a parent caregiver works to half of the current number, so basically 1 in 2. Well, the two is what is needed. This program doesn’t just cover parents like myself who are doing habilitative therapy, and certainly our kiddos won’t have half the needs. This program is also used for attendant care. These services are needed for disabled kiddos and adults who need constant 24/7 one to one supervision or care. Their loved ones can’t be left alone, not ever, and have the types of needs that used to be addressed with a placement into a facility, where abuse and neglect often occurred. Some decades ago that model was abandoned to promote more humane care standards and lower costs. So for parents who are providing this service to their loved ones, attendants couldn’t be found outside of them, so they are getting paid to do it, likely making less than they would if they were able to enter the workforce to pursue their own career interests.
It doesn’t make sense to me that somehow this proposed reduction in hours a parent can be paid to provide therapy or attendant care support is supposed to save our state money. Someone will still have to be paid to provide care in a facility (so the money that would be going to the parent attendant care giver would now go to a provider in a facility, facilities who can’t provide only half the hours legally). Facilities and utilities will have to be paid for (creating extra costs), and if there aren’t enough facilities to cover a surge in need, the creation of those facilities will certainly cost even more money…if we don’t see what other states are currently seeing, which is parents who can no longer afford things like behavioral healthcare turning their kiddos over to the state. Which certainly costs more than an individual living with their family even with the parent as an attendant where both parents are working, paying for food, paying for housing/utilities/transportation costs that the state currently isn’t paying for. Because even if they move those salaries into a facility, that facility also has to still buy food. Still pay for utilities. Still pay for supplies, things that get broken…things that currently right now are only coming out of those parent’s salaries. Are you following my math?
Generally, when parents provide the attendant care, costs are lower and outcomes are better. The disabled individual has a better quality of life. There is less neglect. Families get a chance to have a closer connection with their disabled love one.
So it’s cheaper, and better for the individual.
I’m not seeing the math add up for this proposed reduction. We can’t wish away the needs of disabled individuals in an effort to balance budgets, nor can we engage in magical thinking that those costs can and will be absorbed and covered by the disabled individual’s family in this economy. Many families are already financially stretched to the breaking point. All this reduction will do is create harm and ultimately increase costs for caring for individuals who need these services.
And it might deny them the opportunity to grow the skills necessary to function in our communities. I’ve had therapists along our journey tell me they thought my son would need a facility before now. And in our now, he’s going to school and learning how to read and type with one finger, in a huge part thanks to the parent as paid caregiver program, which has allowed him to receive services he otherwise wouldn’t have been able to as another provider couldn’t be found.
Raising Special Kids is recommending that community members impacted by these changes register for or leave comments via Request to Speak, as this will become part of the legislative record. This can be found at https://apps.azleg.gov/Account/SignOn
April Gratitude & Some Reading And Viewing
To Tony
My sweet Tony, I know impulse control is something you have to fight to improve every day. For you to remember without mistakes the kind of things you couldn’t do around me when I was recovering was a feat that many might not recognize, but I do. I know you don’t speak often of love, nor do you need to. Your actions show me how deeply you feel it. I am so grateful that from the moment it was explained to you that I had severe spinal cord compression, you were so careful with my neck. Not once during my recovery process did you wrap your arm around my neck to pull me into a hug as you used to do when we were sitting next to each other before all of this started. I am so grateful for your gentleness and that you worked so hard to accept as calmly as you could all of the changes this health challenge of mine brought to your routine and what we could do together. I love you always, Mama.
Tony playing catch with another kiddo at his school last week
Some Viewing and Reading to Consider:
I myself would say that I am more than “disheartened,” I am fearful of what this lack of listening could mean for the future services that are critical to the survival and well-being of individuals like our son. I was reminded recently of verses from Matthew 25 by my husband:
“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you? The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’”
We should listen to each other, and we should in my opinion be willing to help those in our communities who are so vulnerable. We as a community need to listen to what disabled community members and their caregivers say is needed without politicization, and we need to speak up peacefully but with whatever volume is necessary to be heard. I am asking each of you consider reaching out to your state reps to encourage them to protect these critical services for the developmentally disabled.
“Is The US Headed Towards Another Civil War?” Ted talk by Barbara F. Walters
Ms. Walters was hired by the CIA in 2017 to help determine which countries were more likely to experience violent political upheavals and she discusses her findings in this video. I think this is very interesting information, and something that anyone who wishes to avoid repeating history should pay attention to. She also has a more involved book on the subject for those of you who are interested, I have recently begun reading it myself.
“What Are Tariffs And How Do They Work?” by Mind Math Money on YouTube
I found this to be a neutral and balanced discussion of tariffs, and I think it is important for anyone in this country to understand, as this is not a tax paid by foreign countries. We will be paying it every time we purchase something, and most of what people in my income bracket and below can afford comes from places like China because it’s still cheaper to manufacture it there and likely will remain that way based on what a living wage is in America. Add the length of time it would take to build factories to bring any manufacturing jobs back to this country, and any way you look at it, what we pay for pretty much everything will go up (even for US cars which are assembled in other countries and cross borders and now have a tariff, even for food, because we import so much and some things we consume can’t really be grown here), what we purchase will likely have to be much less.
With that in mind, as every penny and how it is spent will matter even more to many, may I recommend the following: goodsuniteus.com. This organization keeps track of the political parties each company donates to, so that you can vote with your shrinking pile of discretionary spending dollars if you like and make sure you are spending money with companies whose affiliations you are more comfortable with.
Arizona Legislators: Are You Pro-Life?
Many legislators in our state proudly tout their pro-life support. This week, as letters were being read about the lives of disabled community members during a legislative session, some of our legislators walked out without listening, ultimately blocking a bill from being passed that would have resolved budget shortfalls to disability services in this state. Those legislators didn’t seem to be interested in hearing about those lives or hearing impacted disabled community members pleading to maintain necessary disability services so that they can keep some quality of life. A quality of life that is still below what non-disabled community members experience. And if we can’t listen, can’t show we care about the lives of all community members, I wonder as others have: Are we pro-life, or just pro-birth?
If you are pro-life, in my opinion you should care about those lives, should want to see their needs met. Every time a legislator says they want to target the parents as paid therapists program, what I am hearing is that they are OK with my son’s needs not being met. He meets the statutory requirements for those services, yet as I have written extensively here about, most of the time he’s been eligible for habilitation therapy, a provider other than me couldn’t be found.
So when budgets were passed during those years and not exceeded, it’s not that he didn’t have a need for that therapy type, it’s that there weren’t enough therapists. Budgets were being met then because services were being utilized below the actual level of need because there was no avenue for family members to step in and fill the therapist shortages. This isn’t mismanagement, it’s the legislators cutting costs by cutting services to those who qualify but can’t get them provided any other way. To Representatives Michael Carbone and David Livingston, as the mother of an individual with significant disability, I want your legislative caucus to truly vote pro-life, not just pro-birth. I urge you to support the needs that disabled community members like my son will have simply to be alive.
And for parents, perhaps we should consider swapping hab services so we can show them how little mismanagement there is? They cut parents as paid therapists, and maybe we line up schedules and swap? We’re already part of someone’s habilitation staff to provide these services to our children. If we did that, the budget for disabilities spending would still need to be increased, because there is actually legitimate need there. And maybe then our legislators could take off their partisan colored glasses and see those needs for what they really are: pro-life.
To read more about what happened, please see the reporting linked in this sentence by ABC15: Republicans block bill to cover budget shortfall threatening Arizona’s disability services, by Manuelita Beck
“Put Out?” No.
Just a change in app functionality can show a different picture. What my son’s letter tracing looks like for words without the app correcting the lines for him as he seeks to improve his motor planning and fine motor skills. Photos by Ariana
Our son has now been without PT or OT services for two months. Yesterday I had a conversation with a representative from UMR in our ongoing discussions about this matter, which has been escalated to their OSM. This rep said he knew I had been “put out” by the situation.
No, I wouldn’t describe myself as having been “put out.”
I wonder, did the insurance company expect me to step in and provide these services to him myself for free? Maybe once upon a time that would have happened, but not in this economy. Not with me already working a full time job with him in the school as I recover from spinal surgery. What has happened is that Tony has been going without medically necessary therapy supports as we’ve spent weeks working through discussions on the different reasons they have offered in the past two months for denying coverage for those services- and in addition to the lost time practicing skills with a trained therapy provider, we’ve seen behavioral regressions as he’s struggled to regulate his emotions after loosing two therapists he’s been working with for so many years at the same time.
Before the parents as paid caregiver program was started for habilitation therapy by DDD, I had two choices: I could do the 30 hours of habilitation therapy we were unable to find a provider for myself with him without getting paid or he could go without. He still needed those services, and having the foresight to recognize he would need an inpatient facility without them, I did them for free.
I am currently working with Tony to teach him how to use an electric shaver in habilitation (he’s already getting facial hair at just 12 years old). He’s recently finally mastered putting on jackets with snaps and getting all of the snaps fastened, and we’re continuing to work on sunglasses tolerance so that if he needs glasses, he’ll be able to tolerate wearing them and do so safely.
He still qualified for the habilitation therapy services we were unable to use before the parents as paid caregiver program was launched in Arizona. If a therapist could have been found, he would have been utilizing those resources and DDD would have been paying someone to provide them…therefore, money should have been allocated for those needs that just wasn’t being used because there wasn’t an available therapist in the work force, right? Other states have been allowing the parents to be paid to do this therapy type before our state decided to offer it in the pandemic, I am assuming for these types of reasons, as a means to make sure the needs of disabled individuals are fully met. Then why is it controversial in our state legislature that parents be paid to be providers for their children when a provider can’t be found because there aren’t enough working to meet the need?
Could it be that legislators are expecting parents to once again to step in and do this for free?
That won’t be happening this time around, not in this economy. I don’t know anybody who has one spouse making enough money that they can afford to have the other parent stay home and do that for free right now. We certainly can’t in this family anymore. And so are legislators prepared to ask the tax payers to pay for inpatient facilities and these therapies which will still be mandated by law and easier to staff in a facility?
Working to teach Tony how to turn clothes inside out using chaining and hand over hand techniques in habilitation therapy. This process could take many months before he fully learns and can independently do this skill for himself. He has to be able to feel what the motion will be like and have hand-over-hand support gradually faded to learn physical motions. Tasks are broken down into smaller pieces that are gradually added upon as he learns first one piece and then the next of the skill. I have also used chaining with fading of hand-over-hand support for teaching shaving after first having had to build sensory tolerance to the shaver being on and rubbing across his face.
This is far more than being put out. It’s a full time job worth of additional needs that an average family wouldn’t be facing. I’m already working one full time job with him in the school system, and I already haven’t been able to fill most of his therapy hours for habilitation on top of that for the past several months because of my own medical needs at this time.
I’m not an OT. I’m not a PT. I can pretend to be, but in reality I’m definitely not either one of those things, which can easily be verified by checking what degree I do have versus which ones I don’t. Hab therapy doesn’t legally require nearly the level of specialization or training (though it can be argued that would benefit disabled individuals more, I see it as being unlikely as it would also increase the amount hab therapists needed to be paid to provide this service), so I can see a clear avenue for parents to continue in that role. But trying to fill in for therapists that have a masters degree? A doctorate? That’s not putting anybody out, it’s putting disabled individuals at risk of falling further behind developmentally. Of not gaining necessary support learning activities of daily living.
So no, I’m not put out. I’m heartbroken that this is a snapshot of healthcare for the developmentally disabled in our country.
Mismanagement Probably Not: A Second Open Letter Regarding Arizona DDD/ALTCS Funding Shortages
To our Arizona State Legislature and Governor Hobbs:
I have read that some in our legislature have blamed the governor for mismanagement of DDD funds. And to Representative David Livingston and all of the other esteemed members of our state’s appropriations committee, I would like to propose considering that another explanation is quite possible to exist. During our most recent DDD planning meeting for Tony, his support services coordinator mentioned that she is hearing from more and more families she works with that their commercial insurance is no longer being accepted for those services, services that they had previously been accepted for.
I myself recently received a denial letter for medically necessary speech therapy services given to Tony (speech therapy for an individual using a speech device consists of teaching creating expanded phrases via AAC) after the new insurance plan through my husband’s employer took effect, services that used to be covered. I was told that ours were denied in error (after of course listening to an automated message that says anything verbally told to us over the phone would not be binding, but rather the terms of the contract would determine coverage/payment). I received messages that his medically necessary PT was also denied (for sessions that were done before the provider realized our insurance had changed to UMR, services have remained suspended since they became aware of that information pending receipt of an actual payment or denial that can lead to services being billed to DDD in the entirety), and they were told the plan excluded these services.
Both the business and myself in follow up conversations with UMR were told that our particular plan doesn’t exclude those services, but that their system was set up to erroneously deny claims for all these services under this employer’s plan and it would require a minimum of 30 days to fix. I am not sure what to expect, because honestly, I have documented a different answer from them as to what is going on and will happen each and every time I call them. I was told by their rep Pam, however, that many UMR plans do not at this time cover pediatric therapy services for diagnoses such as Autism. I was also told by our son’s provider that until they have a paid claim through UMR or a denial that can be billed to DDD, his services will remain suspended.
But for those plans that will actually no longer cover these services that perhaps used to? The full bill is going to DDD whereas before only part of it did. That would indeed cause spending to be above what was previously considered necessary without any mismanagement being involved. That’s the nature of insurance in a capitalistic society where companies can determine what they will or won’t pay for any longer, and if something is too expensive? If there is another possible alternate payor?
It is my hope that we will not politicize this issue, but will look at the actual needs of our community members serviced by DDD and ask ourselves what we would want if we were the disabled individual, if it was our child, our grandchild. “There but for the grace of God go I” is an apt statement in these times for many. DDD and ALTCS are the safety nets that allows many individuals in this community a chance to have the sort of lives we ourselves personally might be less likely to object to having if these challenges were indeed ours.
*For those of you who read this before Wednesday’s post, there is another post further down the page on this subject, so kindly keep on scrolling through to read it 😀
And, because anybody going through this will need a stress relieving activity, these were from some of mine for the past week…digital puzzle apps are great if you could have to spend time on hold, etc.
Regarding Proposed Cuts To Services for the Developmentally Disabled in Arizona
An Open Letter to Governor Hobbs, the Arizona State Legislature, and each of you:
In this house, my kiddo has now been without PT and OT for more than a month as the situation I wrote about in my last post remains an active and unresolved matter. So in what would have been an OT session, I am writing a post. While I’ve improved in my surgery recovery to the point where I can play piano an hour at a time, crochet during my entire session with my own therapist, and help my son through school, with each passing day I look at the local and national headlines regarding DDD funding and cuts to Medicaid services with growing concern.
For those of you who do not know, Arizona DDD / ALTCS is set to run out of money in the next couple months as the number of disabled individuals in Arizona has continued to rise, and members of the legislature appropriations committee here are recommending deep cuts for the future despite budget surpluses in other areas. I have posted links at the bottom of this post from media outlets and Raising Special Kids. For me, as a mother who values the sanctity of life, I remain firmly committed to the idea that if we as a community support the right of all life being born, we should be equally willing to provide medically necessary supports for each and every one of those lives to thrive within the community. I am going to post an updated version of thoughts I sent some members of our state legislature recently:
I am the mother of a child with multiple significant disabilities that we adopted from the Arizona foster care system. Our son has been approved for ALTCS and DDD since he was 2 years old owing to the severity of his deficits and care needs. Without the services, we never could have afforded to pay for his care. Our primary insurance through my husband’s employment would not have covered most of his services and he likely would have needed to be placed in an inpatient care facility a long time ago. Tony had one therapist when he was four and a DDD support services coordinator around the time he turned six both state to me that an inpatient care facility were necessary and appropriate for him. He is now nearly 13 and been able to stay successfully at home with us in part due to the services and support he has received.
And as of now, he’s still able to live in our home entirely because of the benefits and services he has received from DDD/ALTCS. Placing him in a facility would have increased the burden to taxpayers for his care, so I would like to start off with a concern that cutting services in any way to these programs will actually ultimately either increase the cost to taxpayers or increase homelessness for the developmentally disabled. ALTCS pays for inpatient facilities used by the developmentally disabled. It would also have a chilling impact on adoptions of individuals with disabilities or specialized needs from the foster care system. Without a support to pay for necessary services, most families wouldn’t be able to afford to make space in their home for these special individuals. A likely decrease would also be seen in the number of families willing to foster disabled children, as they would be unable to absorb those extra costs of care.
It has been discussed recently to target the parents as paid caregivers program, but it is important to understand that these programs benefit disabled individuals that require a therapist or an in home attendant, but non-familial providers for these services could not be found for them. This is a complex issue resulting in part because the pay rate for services such as habilitation isn’t competitive enough to have a sufficient work pool to provide these services to all who meet medical necessity. If the parents or family members cannot provide these services, this will also increase placement in facilities.
In part because of the work I have done with Tony as his habilitative therapist over the past 5 years, he is now in a public school and able to integrate into many areas of the community in a way he otherwise wouldn’t have been able to. My son is one of many for whom a provider was not able to be found and necessary services were provided by me. With the current economic circumstances, very few families could afford to do this for free which again would increase the burden on the taxpayers ultimately as more families would seek to place their loved ones in facilities.
In my opinion there are other programs that can be reduced, including providing vouchers to help cover the costs for private schooling for developmentally normal children who could still thrive in their public schools. These are children who are going to be able to do well and succeed without these kinds of monetary supports. Children like my son won’t be able to.
This is a very complex issue and there is so much more I could say. I am very grateful for the time you took in reading this and wish you a wonderful day…
And this I wish to each of you as well, but with an added request. If you are a family member, friend, or loved one, please consider reaching out to your state legislators if you feel comfortable supporting the ongoing funding for these services.
Click on the phrases below for links to the following articles:
“Action Alert!” by Raising Special Kids
“Medicaid Matters: Tucker’s Story of Strength and Inclusion,” Raising Special Kids
Just Like That UMR Happened…
Bear with me, that title is going to make sense in a few paragraphs.
On December 16th, 2024, I met with an orthopedic spine surgeon to discuss my MRI findings and a proposed surgery. He felt that waiting any longer than necessary to do the surgery increased my risk of permanent deficits, specifically he mentioned needing a cane or a walker if we waited more than a few weeks. An EMG just two days later showed some damage to my motor planning nerves. That same day, surgery was scheduled for December 24th, and when my surgeon spoke with me the morning of the procedure, he told me that there was a possibility I wouldn’t see any improvement for my current symptoms, but that what they were planning was that this surgery could keep things from getting any worse.
Me, from a screenshot of an I love you video I sent my kiddos after the surgery, and with an allergic reaction to the adhesive on the waterproof dressing they were used as shown on Dec. 26th from a picture sent to the surgeon.
For a few days now I’ve been walking ten thousand steps a day or more. Yesterday I was over 13K. I might have been there sooner, but I ended up with COVID less than a week after my surgery, which pushed my sitting heart rates into the 150s initially, down to 125 laying down in the ED. The ER doctor put me on Paxlovid, and thankfully I didn’t have any sort of allergic reaction and it helped bring my heart rate down quite a bit (I wasn’t so lucky as regards to the sennosides they used in the hospital after my surgery, but it was just hives and redness for that so not so bad either). While my sitting heart rate is thankfully much lower now, it’s still not quite what it was because COVID can’t seem to touch my life without igniting a POTS flare up.
Overall, I am recovering well and each and every day gets better. Most of my previous neurological symptoms are gone, and the remaining have been improving bit by bit. I’m playing piano with fewer mistakes than I was in the last few months before the surgery, my handwriting has gotten better again, and it’s no longer so difficult for me to type. So, you’d think that would be cause for celebration and it is. But every now and then it seems like there must be a fly in every ointment, and so here it is:
A new year, a new insurance plan through my husband’s employer.
UMR.
In case you’re not familiar with that name, it’s a United Healthcare company. I have no doubt at this point because of the news you’re vaguely familiar with who they are even if you’ve never had the insurance yourself.
They’ve already denied coverage for the bone growth simulator ordered by my surgeon. I had a cervical corpectomy with the vertebrae portion they removed being cut up and put in a titanium cage they used to stabilize the area that had to be cut out to remove the disk pressing on my spinal cord, so he wants to prevent non-union or lack of fusion for those pieces. Definitely a medically reasonable request under the circumstances.
And this morning it was confirmed to me that Tony’s OT and PT services would be put on hold until further notice because the agency who has been providing those services for years (Amara has been working with us for I think close to 7 years now, and we were with that company for different therapists before her) won’t accept patients who have that insurance any longer unless it can be proven that UMR will pay the claim. What I was told is that they’ve been stuck in a cycle where they call UMR to see if prior auth is required, they get told it’s not, then they submit a claim, and the claim gets denied for lack of authorization…but not in a timely manner. UMR isn’t returning those denials within the time frame required by DDD to get reimbursement if the claim is denied.
So they had to eat those costs. And they need to be able to pay their therapists. Also a very reasonable expectation. I called the prior auth line for our insurance today because it’s handled by a different company for PT/OT (and that company does have reps working today). I was told no prior auth was required by the person I spoke with, Ms. S. The therapy provider called UMR last week and was told that they showed that authorization will be required for our plan (something the prior auth company denies). The prior auth team said that they can’t do anything about that and to take it up with UMR. I called UMR, and sat on hold for more than 30 minutes before an auto recorded message finally came on saying they “are currently closed to observe the holiday, please call back…”
And just like that, UMR happened to more than one of my days in the past week. UMR happened to my son’s life in a way that is harmful to him. If UMR pays or processes one of his January claims in a timely manner, this therapy provider may resume his services. If it is handled by UMR the way other cases were handled for clients of this provider, they are going to terminate his services immediately through their company, and this is one of the bigger in-home therapy providers in the area. Depending on how long UMR takes to go through this process, Tony may even loose his current therapists and have to wait for new ones to be assigned even if they do pay, and that’s been very upsetting for him. I have heard from this provider that taking more than one month was common for the denial process to play out for claims for other clients with UMR in recent years.
Indeed.
It’s a good think I’m recovering so well from this surgery. While I’m hoping for good things to come out of this, I recognize we may need the strength of my current recovery for more than just the return to me doing therapy work (Tony and I already did hab today) or my return to working in the school with Tony tomorrow. I wish each of you wonderful week ahead. Much love, Ari
Two Autistics Walked In…
This is a lower resolution screenshot taken from a brief summary video I was able to download from my MRI in October. What is shown here, according to the surgeon who is treating me, is one of my disks which has slipped behind a vertebrae. And what you are seeing is a picture of what the spinal cord compression looked like then.
As I have considered so many times over the past few weeks what I would like to write next, I think that so many of the words that could have spilled across these pages were happy to sacrifice themselves to the efforts I have been making to pull pressure off of my nervous system wherever available. Maintaining this space here is one of the least necessary things in my world.
I have focused most of efforts on meditation, yoga, showing up as Tony’s aid at school, making time for my own therapy sessions (currently we’re working on medical trauma), and otherwise supporting the immediate needs of my family. You would think perhaps in all of this I would have considered what I would prefer to say about my own recent Autism diagnosis. And I have. Many times. I have turned it over and over in my mind, and it goes something like this:
Two Autistics walked into a bar…and couldn’t agree on much of anything. Not whether puzzles or puzzle pieces are insulting to individuals with Autism (I personally love them and spend time on a puzzle app daily, yet others find it degrading to see puzzles used as symbol for Autism) nor whether every Autistic needs PT/OT/ST/ABA/DRI/PRT (not everyone on the spectrum does but many will). Certainly not on whether or not every Autistic should get a diagnosis.
I am a person who sometimes says uncomfortable truths, having either missed or overlooked the desire for others that they should remain unsaid. So what I will say here is consistent with that personal theme and is simply this: only if a person needs a diagnosis to obtain services and/or only if they want it. The truth is that there is still so much stigma, so much discrimination, so much ableism that a person has to consider carefully for themselves if they want to actually walk that road if they don’t have to. As myself and any other Autistic who makes it to adulthood without services demonstrates, therapies aren’t necessary for everyone.
I have a degree. I had jobs with titles and non-entry level responsibilities (though they are currently super irrelevant given the current needs for our family). I know I experienced some things these last several years before I was diagnosed just from therapists who clocked me as possibly Autistic after working in our home that gave me considerable pause as to whether or not I would ever want to actually have that as an official diagnosis, so I will never think poorly of a person who decides that isn’t the battle they want to fight for the rest of their lives. For perspective taking, neurotypical witnesses corroborated those differences I observed and validated my perspective to me and others, which was a gift. Gaslighting in these types of situations can be a thing far too readily experienced for Autistics or other individuals deemed to have any sort of disability.
Not everyone will have that luxury of choosing whether or not they can or even need that type of diagnosis. Those decisions will be made for them, either because they have to be because services are necessary or because they had a very aware parent or someone within the community who pushed for it when they were too young to have legal standing to decide for themselves.
Hiding or masking doesn’t change what a person is, who they are, or what is going on with them. In the having of this particular diagnosis, even actual medical problems can be written off as more likely being just “in your head” or just a problem with your sensory processing until otherwise incontrovertibly proven. Every capability even sometimes has to be proven, and often then some will still be discounted or disbelieved. Those challenges won’t just vanish though in the absence of a diagnosis if a person can still be clocked as possibly Autistic for any reason.
I maintain what I always have: we are way too focused on labels, way too focused on determining who has value to our society and who doesn’t by them. I am a person who believes in love and compassion, in finding safe spaces for everyone within the community. I think we should just see one another in the context of what we can and can’t do (with minds fully open to seeing what actually is possible there), what our needs are or aren’t…and just leave the stigma as a relic of the past. Maybe find it in our hearts to support what is or isn’t without judging it.
As a young woman in my 20’s, nobody thought of me as Autistic. I was thought to be a bit reserved, a bit of a rebel at times, somewhat eccentric, smart but a bit too blunt on occasion. I functioned in the workspace in a manner that my competence was never questioned. To me I have always found it an oddity of our society that a single diagnosis, or even a single impression that led to the wrong conclusion, can lead to such drastic revisions in how a person is seen or treated within the community for a considerable time or even the rest of their lives. Sadly, I think a diagnosis can sometimes reach an erroneous editorial hand into a person’s past as well in ways that can be detrimental to the well-being of the individuals involved.
As I get ready to head into a more involved surgical procedure, I am going to need to take some time off from typing. Perhaps then when I am more recovered I shall type up some more loose ends here. Until then, I am wishing each of you a fabulous holiday season, whatever it is you celebrate or even if you don’t. Much love, Ari.
November Gratitude & Some Reading/Viewing
Miss Emily
Somehow even when I know the way time can slip through the fingers and the mind, I still struggle to math that there have been enough days to add up to nearly 9 years now that we’ve known each other. From Tony’s second music therapist to one of my closest friends, you will always be part of the family of my heart. Thank you for dropping everything you were doing that day back in July to come to my house when I called so that someone could be with Tony until another family member could get here while I was taken to the ER. I don’t like to go anywhere like that at this point unless I know I need it, and my right sided weakness was bad enough the ER doctor thought I might be having a stroke. I thankfully wasn’t, but you rushed over as if I could have been when I told you my symptoms and like every second counted. You are a wonderful, kind, caring, and giving woman. Thank you again <3
Our School Family & IEP Team
Anonymous here but not in my heart, thank you for expeditiously approving an IEP addendum arranging for Tony to ride the school bus with my assistance. As always, we are grateful for your support of his needs and his growth. (Shown below is some of his school work from this past week, where he’s showing improvements in tracing things on programs that allow for errors).
Some Reading and Viewing To Consider
Delilah Green Doesn’t Care, by Ashley Herring Blake
I picked this book up in paperback format quite some time ago during a public therapy outing, but didn’t read it until this past month, when I decided the lack of blue screen light made it ideal for pre-bedtime reading. The titular Delilah has a complicated, pain filled relationship with both her stepmother and stepsister Astrid, to the point that only a very hefty paycheck can persuade her to return to her hometown as Astrid’s wedding photographer. While in town, she falls in love with Claire, one of her stepsister’s closest friends.
The past few months have had difficult moments for me, and while there are multiple things about this book I liked, my primary reason for recommending it was a certain cayenne pepper filled scene that started on 271. I hadn’t laughed so hard in weeks, it was great for elevating my spirits. I felt like the author did a good job bringing nuance to the reasons Delilah and Astrid’s relationship had deteriorated, and I appreciated that it ended on a hopeful note for a true family relationship developing between the two.
El Secreto Del Rio, Netflix
I loved, loved, loved this. I watched it in Spanish, but I believe it does have English audio as an option. The story starts with a young child (Manuel) who goes to stay with a grandmother because the mother is secretly receiving cancer treatments. While there, the drunk uncle of a new friend (Erick) tries to abuse Manuel, and while Erick is trying to help free Manuel, the uncle falls into the river, hitting his head and dying. For me, Erick finding a way to overcome the prejudices instilled by his father to find an enduring love for Manuel (who transitioned to Sicarú as an adult) as the plot evolved was the gem of this story. I think learning to listen to the stories of others, to see their value and humanity even when we don’t understand their differences, is a beautiful thing. I also greatly appreciate that the 8 episode series ended on happier notes for most of the characters.
(Latest puzzle completed, and from our visit to PCH to see genetics this past week…)