Shaping Tony’s willingness to do functional tasks in his art specials, his least favorite subject at school. Photos by Ariana
Right now as I’m starting to type this post, it’s 6:30 pm MST. Instead of planning to wind down, I’m soon to be heading out the door to walk out to do a therapy walk with Tony to help him re-acclimate to Halloween displays before the holiday itself arrives. That’s for one of my jobs, as my son’s habilitation therapist.
As I have mentioned before, I now have a second job as the one-to-one instructional aid for our son in his public school. Because I’m working two jobs, I don’t really have a lot of time, so I’m going to be more succinct than I otherwise would.
There is a staffing crisis that is only going to swell and grow in our public school system. Right now, I make $5 an hour more doing hab than I do as my son’s one-to-one aid, but I have to tell you, I’m working every bit at hard. And, neither pays enough to support myself alone much less a family. I could currently get paid more at some retail or fast food jobs than as an instructional aid in the school system.
Shown above I am using token boards for certain tasks like sitting or not touching light switches (I make and implement those myself), he needs sensory breaks and constant supervision because occasionally he gets overwhelmed and walks out of his classroom and needs someone to direct him to a bench and sit with him until he feels ready to walk back in.He needs more intensive support learning the routines, behavioral expectations, and how to do the functional tasks required of this environment.
Some parents think that’s not their problem because the law requires a free public education, but I feel like soon it’s going to be everyone’s problem. Unless we can pay the people who support and teach our children more, turnover and vacancies could continue to increase. I’m going to quote Axios Phoenix here, but I have read the same information in more than one place:
“The average nurse, first responder or teacher doesn’t make enough to afford a home in metro Phoenix…in Phoenix, you need to make $116,300 annually to afford the median home…the typical waiter or retail worker doesn’t make enough to afford any type of housing in any valley city.”
Not any. And that’s a serious problem in my opinion.
When his ABA team needs to take the day off, sometimes we do public therapy work at an ice cream store across the street right after he’s done so we can expand his sitting tolerance with a more preferred task first.
Again, I’d like to reiterate I could make more at jobs where I wouldn’t have to work nearly so hard than I can as an instructional aid. I really love what I’m doing there and I think his school really has an awesome staff. But if I had to support even myself alone I couldn’t do it in this economy, much less as a family.
And I’ve witnessed turn over that has already occurred in the first month of school alone when it comes to the other instructional aids. If we can’t pay the people who support our teachers and our children enough to live on, I think we can only expect to see fewer and fewer people willing to step into that role to the point where some day, there won’t be enough teachers or aids to get the job safely done.
And that is when it will truly be everyone’s problem.
Tony practicing grading his muscle movements while drinking from a juice box so that it doesn’t gush out while he’s lifting it during a hab session this week, photos by Ariana
On September 6th, I attended the virtual question and answer session held by the Arizona AHCCCS Administration to address additional changes they had made based on parent feedback to the CMS 1115 waiver proposal. As a parent, I personally want to express my appreciation and gratitude that our voices were heard, considered, and that modifications were made to the waiver allowing for the continuation of parents as the paid habilitative therapist.
As a parent of an individual who has definitely benefited from this program (and the skills he has gained benefit everyone who works with him both now and in the future), I was pleased to hear that parents will still be able to act as a hab therapist to their child both if one cannot be found and/or the family/disabled loved one feel that is the best solution for their circumstances regardless. I was also happy to hear that CMS has provided guidance that the current provisions can continue until the current waiver process is completed even if it passes the November 11th deadline. This prevents disruptions in services which is the most desirable outcome in my opinion for anyone needing these supports.
Part of the proposal does call for a process where parents are required to demonstrate competency in meeting the therapeutic goals. As I understood it, some policy points as regards to the implementation of this are still to be determined and there will be upcoming stakeholder meetings to solidify this process.
As a parent, my every hope is to participate in that. As I mentioned last week, a person does not have to have any experience working with the developmentally disabled or any training in basic therapeutic techniques to be a hab therapist in Arizona. We had one individual who worked briefly with our family that had never worked with the developmentally disabled, knew nothing about what to expect with the conditions, knew nothing about how to implement or work on his goals, and knew nothing about therapeutic technique.
The company she was coming from did not provide any training on these matters either as it wasn’t required of them. I did all of her training, all of the teaching about what to expect for an individual with Autism, etc. The company did not provide a field trainer to work with her. Whitney was the only hab therapist to work with us that wasn’t given training in his programming and or what to expect from his conditions by me personally. Based on this and other experiences, I personally would hope that a proposal could be implemented that would require any habilitative therapist, whether they were a parent or no relation whatsoever to the individual needing services, to demonstrate basic understanding of competencies and therapy techniques needed.
Tony during PE
I remain very busy working as both my son’s one-to-one aid as part of his school transition and as his hab therapist, so I think I will wrap my thoughts up so I can get to my next “to do” item. As I watch Tony move into this new environment, I am confident that having the flexibility for me to be his hab therapist helped our son gain the skills necessary for him to transition into the public school system. His team there has been lovely to work with, and they have had such positive feedback within the past week to give me about how they think he’s doing and that has been soul-deep joyful to watch and to experience with him.
We are now there for an hour and a half each day, with him attending both a general education home room and working on getting used to his specials rotation. I personally am thankful I can continue to provide him with this support as his habilitative therapist as long as it is necessary for me to do so and would like to officially end on a note of gratitude and appreciation to the Arizona AHCCCS Administration for hearing the voices of the parents and modifying the waiver proposal that was submitted to CMS.
Sensory room breaks are definitely some of his favorite school moments at school, next to PE. I think he may actually like that the more 😀
Shortly after I sent out my post last Saturday, I received an e-mail notifying me that The Fabulous Miss Whitney had passed away. For those of you who haven’t been reading with us long enough to know, she was his first habilitative therapist (between the ages of 3 and 6). Our son loved her. I loved her. Our family loved her. I spent an hour crying last Saturday.
Whitney was better qualified than many habilitative therapists. She had a degree in speech language pathology, worked in special education, and shortly after she moved to another state, completed her Masters in Special Education. Hab therapists in the state of Arizona aren’t required to have any sort of training or education, so truly we had extraordinary luck to work with her. Beyond that, it was an honor. She is a beautiful person.
Even though most of the years she was with us she was only able to cover 10 hours a week of his approved hab hours because of her job in the school system, our family and our son were blessed beyond measure to have someone with so much love, so much compassion, and so much knowledge and experience as regards to therapy techniques and the developmentally disabled working with us. Yes, she had a supervising BCBA because the first two years of the hab program in Arizona require use of ABA and a BCBA to do the programming for individuals with a qualifying diagnosis of Autism (past those firsts couple of years the hab therapists and family direct how the goals are to be worked on and what strategies are to be used). But some of the ideas that benefited Tony came only from her.
For example, our little man had significant trouble sucking through a straw and couldn’t seal his lips around the edges of a regular cup. She recommended a product with specialized attachments to promote lip strength and teach the ability to suck which I purchased (and if memory serves reviewed it even) from Amazon that would allow me to squeeze liquid up a tube initially to help him gain the concept. She is the first and only person to have recommended that to us, and at the point she joined our team, we had already been doing other types of therapy for a year and a half.
She also recommended trying out colored construction paper initially for scribbling because white paper at the time reflected the light too much and it hurt Tony’s eyes to look at it while trying to scribble so he wouldn’t. She truly was fabulous and our family owes her more than I could ever begin to articulate.
Because of that, I am going to finish by creating moments of typing and reading silence.
Tony sitting in his general education home room last week, photos by Ariana
So Much Gratitude
This is a complicated season in our lives, and I struggled to narrow the focus of my appreciation down to one person or one circumstance. We as a family have seen and felt the support of the special education team from our son’s public school district as we have ongoing discussions about the accommodations he needs for the best chance of success for his transition into that environment. To each and every one of you, thank you.
We have also been so grateful for the diligence and work our son’s ABA team put into getting a new authorization for him when we had an unplanned health insurance change at the start of the month. I can’t thank you guys enough for doing this in a manner that ensured no disruptions to his services.
And above all, I am grateful for my family and my son, who is working so hard to do things that feel scary or hard for him right now as he adjusts to his new school and the routines they have. This past week Tony made it to both his general education home room and his assigned specials class, which are huge steps for him. I am so thankful that he continues to try so hard, even when things feel hard for him.
A General Note
Friends, Family, and loved ones- Sometime soon I am going to need to be taking some time off for a medically necessary hysterectomy. This was not a planned detour of our current journey, and I don’t want anyone to worry (biopsy came back benign according to the lab report I accessed). However, I imagine I may not want to do any typing for a couple of weeks after that surgery, so…reading it will be instead of writing for me. Which may help with the next time I make recommendations, because this month I was so busy with appointments, therapy, and the school transition I didn’t finish too many books.
A Tiny bit Of Reading & Viewing To Consider (links on titles)
I know many of you have read my thoughts on the above, but this is a brief update stating that parent feedback was considered by the AZ AHCCCS Administration and revisions were made to the CMS waiver proposal that would, according to this article, allow parents to be the habilitative providers if no other provider could be found. There is a forum being held on September 6th regarding the new modifications, and I personally look forward to hearing more specifics about what exactly has been proposed, but I find this to be a very encouraging development.
Anybody who knows me knows I love me my makeup. I love to have fun with it, and it’s kind of like a form of art therapy for me right now when things are harder. Even though I need to look more professional when I am working with our son at school, I still really look forward to the chance to be more dramatic on the weekends. Sometimes I come up with my own looks, sometimes I decide to adapt something someone else does. I have recommended videos from this artist before, I think she’s talented and we have a similar eye shadow aesthetic. This was my favorite of her looks for the past month and I recreated it last weekend using different products (because I don’t own this palette and I am on what’s called a “no buy” right now) and making a few modifications for the differences in our eye shape and skin type (mine’s just a wee bit more crepe and drape-like given the difference in our age).
My recreation of her look….
Just a reminder that I do modify my priming process to give that much powder a cream effect since I am 47 (right now I’m using a *small* amount of Maybelline Baby Skin Primer underneath Maybelline Instant Age Rewind Concealer, setting it with a translucent powder and then putting an eyeshadow primer over that. For colors I want to appear true to tone like this I will use a white primer like Juvia’s Place I Prep, I Prime) and just pat it over the other stuff and through the magic of interactive product chemistry, it soaks up the powder products quite well for those of us with more mature skin who still want to use all of the bolder, more colorful powder products.
Today’s makeup in a lighting and angle to make it easier to see the more cream-like appearance of the powder shadows with my eye priming method.
Me using some of my last bits of Dream Urban foundation, Jan 2023, photos by Ariana
Late December of 2022 I had an unplanned for Makeup Crisis. I discovered that my preferred foundation, Maybelline Dream Urban Cover Flawless Coverage Foundation was discontinued. I may have perhaps discovered it sooner, but I had purchased several bottles the last time I was in a store and was finally nearing the end of my supply.
Why Maybelline, why???
The higher end product it was meant to dupe by IT cosmetics makes my skin break out. And, it’s way more expensive. I wear foundation every day, with my makeup habits I can’t afford expensive foundations.
Now, for someone in their 20’s with firm and supple skin, this really wouldn’t be that big of a deal. The market is inundated with products at every price point that can get the job done no problem. But if you are in your 40’s? Nope. Not just any foundation will do or you can end up looking worse with makeup on than without.
I am 47, and what I have discovered in the past several months is that at this age, I’ve become the Goldilocks of drugstore foundations. My preferred foundation is glowy, has a minimum of SPF 30, and is medium to full coverage. Yes, I already put on a separate SPF, but with skin this fair and a history of some lesions headed to the dark side, I like as much layered coverage as possible.
Because some of my loved ones are also in need of foundation that flatters maturing skin, I am giving my breakdown of the products I have been using as I have tried to find an adequate replacement for the Maybelline Dream Urban. Not one of them meets all of my personal preferences criteria- though none of them made me personally break out- but some of them definitely worked better than others for me personally.
The first one I tried was Juvia’s Place I Am Magic Natural Radiance Foundation. This was a Crypt Keeper converting disaster and if you are over the age of 30 I really don’t think you should waste your time (or your money) trying this product. A friend saw me the first day I tried it and commented on how much it aged me and did not look flattering on my skin. Couldn’t agree more. This product made my lines under my eyes seem like valleys and this product makes me look at least 15 years older than I do without makeup. Even mixing it with other products to thin it down didn’t work, this one looked so bad I couldn’t bring myself to finish the tube. The first pick below is the first day I tried the Juvia’s Place foundation, the second is two days later, same eye, no makeup.
The next product I tried was L’Oreal Age Perfect Radiant Serum Foundation, and this one isn’t bad. My main concerns about this foundation are that it’s slightly glowier than I like and that it appears to be getting harder to find in the stores, which can be a precursor to a product being discontinued. I feel like the coverage is good, it doesn’t enhance my lines, and it has all the SPF I want in my foundation and is currently my preferred replacement for those days where I want to wear a very dramatic eye look.
Just a hint too much glow, but otherwise not so bad.
I also tried Revlon Illuminance Foundation (No SPF) around the same time, and for this product, it’s definitely too glowy. It doesn’t matter how much powder I put on it, and I was caking it on to get through the bottle, it still would glow through like someone sprayed my face down with a light mist of water or oil. The color was flattering, the coverage was lighter than I preferred, and in order for it to not rub off when I put on my other face products I had to use a setting spray on it before I could powder, blush, bronze, and highlight.
I also tried the Maybelline Dream Radiant Liquid Foundation. The glow is still slightly more than I want, but my biggest gripe for this foundation is the coverage is really best for natural looks and there is no added SPF. Otherwise I think it’s pretty flattering and I am happy to use it for days where I don’t want my makeup to be so dramatic.
Covergirl + Olay Simply Ageless 3-in-1 Liquid Foundation isn’t bad, but it makes the lines on my forehead seem more pronounced. L’Oreal Infallible Pro-Glow Liquid Foundation also glows to the heavens no matter how much powder I set it with, and it can rub off in spots with powder product application.
Covergirl, lines more pronounced on forehead with this oneL’Oreal Infallible Pro-Glow, this is today right after I finished my makeup, and this glow can be seen from outer space!
And Maybelline, if you’re reading this? I would hope you were canceling that Dream Urban foundation product for lower sales and not because glowier serum foundations are the current trend. Because if there were good sales…I don’t know, maybe bring it back? Even a middle-aged Goldilocks of Drugstore Foundations wants to look her best.
Tony sitting at his desk in a special education self-contained classroom at his school, all photos by Ariana
As you read this, I want you to envision if this were your reality, how the world would feel, how you would act. Imagine even something so common as foam soap could make you gag and vomit if it touched your skin, and that most everything that touched your skin caused pain no matter how gently it landed or how soft it was. Imagine that even common sounds were so loud to you that it caused disorientation with intense pain or headaches. Imagine that everything you tried to do, everything you were asked to do was so hard you couldn’t do it without lots of practice for months or even years, that everything was so hard it was like the subject you hated most, the one you were failing, the one that made you feel really bad about yourself and your ability to do things, the one that the other kids made fun of your efforts at…and now, that’s nearly every waking moment of your day because everything is that hard for you. Imagine that people constantly talk about what you need to be better at around you as part of your therapy programs, so you can never forget that you aren’t doing as well as everybody around you. Imagine what it feels like to have people seeing far more of your struggles to do things than your successes.
How would you act? How would you feel?
Would you be calm? Would you be cooperative? Would you be happy?
Would you be scared of everything around you?
Would it become easier to refuse to try and do things than to keep looking like the person who couldn’t do anything as well as the people around you?
This is what each of you needs to understand about my son. This is what the world has felt like and to some degree still feels like to him.
And changes others might calmly tolerate, he’s only now getting to the point where he can roll with them. Today for example, we went to a park we haven’t been to in a couple of months because of the heat…and discovered they removed all of the old equipment and replaced it with something entirely different. His jaw was dropped a lot, but he did some playing on it and stayed calm. Even two years ago, this would have caused a melt down because it was different and he wasn’t warned and it wasn’t what he expected.
With a great deal of therapy, he can calmly wash his hands with the foam soap in the nurse’s bathroom at his school and still have a smile on his face while he’s doing it. Other things are still much, much harder for him. But he’s capable of them with the right supports.
Which is why his developmental pediatrician and his combined therapy team collaborated with the school in a discussion of our son’s needs. What was recommended and what was agreed to was a gradual integration into the school environment, with 20-30 minutes a day for the first couple of weeks and then slowly increasing both the time and the functional expectations for the environment. Because for Tony, for the fear to feel manageable enough for him to try, he needs exposure to start out slow. He needs expectations to start out slow. Once he’s less frightened, he’s more willing to show you his best effort, but he’s still going to refuse some things sometimes because it still feels easier for him to be the boy who says “no” than the boy who always struggles and can’t do things as well as other kiddos his age.
Because he does know, and he is aware.
Sitting outside his gen ed homeroom during hab therapy after having practiced walking there.
After his first two weeks, he’s tolerating 40 minutes on campus. He is happiest in the self-contained class he’s assigned to because it’s attached to a sensory room, and he loves that because it has the same type of crash pad we have at home. He’s walking calmly to class, self-harming still remains a thing of the past, and he’s increasing his cooperation with instructions at school. We have things we are needing to practice (like walking to his gen ed homeroom) in hab therapy after school to help support what he needs to be doing in school. Some days he sits most of the time we are there, others he struggles to do that. Some days he can trace a few letters and label some characters and do some sight word memory games, others he just wants to look through a book. He’s working on it, we’re working on it.
As his mother, I am super thankful that his local public school team was willing to give this a shot and has been doing so much to support our son and our family in these efforts. But it’s going to be slow, the journey to reaching a full school day worth of attendance. And it needs to be slow, or he’ll reject this environment and these activities with everything that is in him.
And maybe if the world felt that way to you also, you’d need slow and steady too.
Us getting ready to go down for his breakfast smoothie on a school day. Tony is really happy I have been asked to be his one-to-one aid at school as part of this transition.
And I’m thankful the makeup still gets to be “extra” on the weekends even when we are doing hab…
Tony and I doing habilitative therapy to help get him used to the environment and practice functional skills at his school placement, photos by Ariana
Yesterday afternoon, I read the public response from Raising Special Kids about AHCCCS 1115, the proposed CMS waiver that seeks to extend some provisions allowing parents to provide attendant care to their children, while discontinuing others, namely allowing parents to become the paid habilitative therapy providers. I feel it is important for me to share my thoughts, but I also do not have time to finesse my writing to the degree I might in other circumstances, as I have been and will continue to be working on tasks related to my hiring as the one-to-one aid for my son in his school district as he transitions back into that environment.
For our son, it is a necessary accommodation to provide the least restrictive environment that he have a person he already cooperates with safety instructions from working with him in the school environment until he generalizes that cooperation to staff there. We asked for and wanted his RBT to go in with him, and the school district communicated that their policy prohibits outside therapists from working with students inside the classroom.
So here I am spending time and planning on giving up more profitable financial opportunities I could have had to provide the support necessary for my son to flourish as his one-to-one for the first year until he can generalize cooperation of safety instructions to his teacher and permanent one-to-one.
So I don’t have a lot of time right now to sound polished, collected, artistic, or anything other than a mom who sometimes feels bone tired, and I will ask each of you bear patiently with that.
On the surface, the scenario I am describing might seem to support the argument that insisting hab providers be someone other than the parents promotes generalization. But the reality is he’s worked with dozens of therapists in other disciplines (ABA, NMT, PT, OT, ST, and even HAB) who were not me over the years, and it has only been a more recent development within the past year that he will generalize critical safety instructions to anyone other than me. So, I do not believe his struggles with generalization are related to lack of exposure to other people, but rather the specific symptoms of his disabilities in general.
When our son was first approved for habilitative therapy, we could only find someone to do 10 of the 40 hours he was assessed for. So I did the other 30 unpaid.
My son is potty trained because of me and that unpaid work (that took a year of work, and still required reinforcers for years to ensure cooperation up until about 8 months ago.) He no longer smears poop on the walls because of me and that unpaid work. And so, so much more that I don’t have time to write here, but feel free to stick around and read some posts from the past 5 years or so if you want a comprehensive list.
After he was out of his diapers, his physical therapist at the time looked at me and she said “we never thought we’d see the day.” All of his PT/OT/ST services were at the same location at that point, so there was a coordinated “we” behind that statement. Everyone who will ever work with our son in any environment has and will continue to benefit from work I did for free because we couldn’t find providers.
I have a kiddo with a history of hours a day of self-harming. I have a kiddo who would try to use his entire body weight to push through someone like a football player for upwards of an hour to get what he wants. A kiddo who couldn’t calmly or safely take “no” for an answer for years. A kiddo who to this day has risk assessment comparable to that of a kiddo under 18 months of age. A kiddo with challenges so severe people would say things to me like this quote as I remember it from his current developmental pediatrician (who is truly fabulous!) after the first 2 hours she spent assessing him: “When I first read your paperwork, I thought you were exaggerating- but you weren’t!” A kiddo who wouldn’t keep his clothes on when therapists were present (he now can for an entire day of therapists in home because of paid work I did in hab), who would frequently grab his genitals and start stroking regardless of who was in the room. A kiddo who at one point required 2 adults to his one to provide almost all therapy services.
That second person was me. And I wasn’t paid for that either.
We wanted hab providers other than me to fill all of his hours, but we haven’t had anybody to do most of his hours other than me for 6 of his 8 years he has been assessed as meeting medical necessity for hab.
Of course every success Tony has would be absolutely impossible without all of the therapists who have worked with him (and I am grateful to each and every one of them), but it is also true it would have been impossible without the work I did for *free* during his early years, without the work that I have been paid for the past three-but will no longer be able to afford to do for free if we can’t find a provider.
Work that will then go undone.
Practicing sitting appropriately and asking permission to get up and walk somewhere else at the school…
I understand the concern expressed by Raising Special Kids that if parents are allowed to remain providers, it may promote atrophy in the work force of habilitative providers. But for families of individuals like my son, that atrophy might not be going anywhere because the challenges can be beyond what a person paid at the level of habilitative therapy wants to deal with. And, until the rules governing habilitative workers being able to make up hours that are canceled are changed, that may continue even for other individuals. Currently, if a family cancels the therapy because of an illness or an emergency, the hab therapist cannot make up those hours and will not be able to have an opportunity to earn those wages, so if they need that money to support themselves, this job won’t provide them with the stability of income they need.
We’ve had people turn down being our son’s habilitative therapist once they learned the details of his needs and challenges. And even though he hasn’t done any self-harming in any setting in more than 12 weeks now, it still takes him so long to learn certain skills we may continue to struggle to find individuals with the patience to fill all of his hours.
So many skills our son currently has he wouldn’t if I hadn’t been working with him. He may have needed to be in a facility at a young age if he were in a family where one parent couldn’t afford to stay home and provide that support for free.
So my belief based on my personal experiences is that in order to provide the best outcomes to individuals with disabilities, especially those who have severe behavioral challenges, there needs to be at a minimum a provision allowing for the parent to become the paid provider if no other provider can be found. I feel like for individuals with challenges like my son, there is an increased risk of need for placement in a facility outside of the home without a paid option for the parent to step in when no other provider can be found.
I think having provisions in place requiring documentation that a hab provider cannot be found is appropriate to substantiate the need, but it is my hope that the AHCCCS Administration and other stake holders in this process will hear the needs of families such as mine as they are fine-tuning the draft of proposals submitted to CMS and at a minimum include a provision allowing for parents to be the habilitative provider if no other provider is willing to take the case.
Tony and I during a recent hab session, where we worked on safety skills, being aware of the personal space of others, not touching things that don’t belong to him, and so much more. All photos by Ariana
My name is Ariana T and my son, Anthony (Tony) has multiple qualifying DDD diagnoses. He has complex behavioral and therapeutic needs, but has demonstrated progress through his therapies that have allowed him to gain skills he otherwise would not have had, thus reducing the cost of providing future services to him.
For the past three years, I have been getting paid as his primary hab therapist. Before that, I spent years doing it for free because he needed those skills, which is well above the level of care that is legally expected of a parent based on my level of understanding. I was doing that because we couldn’t find therapists in our area who were both able and willing to act as his habilitative therapists. We have had therapists who interviewed with our family choose to reject his case and rather take the case of a kiddo who was considered to be higher functioning or with fewer behavioral needs once they learned about his specific needs.
In public we work on things like practicing ordering menu items from others, saying hi to others, respecting their space when waiting in line…
Of the 8 years my son has been approved for hab, I have been providing those services for more than 10 hours a week (20-30) for 6 of those years. That’s a long stretch of time where nobody else could be found. For me, as a parent, there is nothing I want more than for somebody else to be able to come and help him with these things because he does need that practice. But what he needs most is the skills, and if nobody else can be found who can do it, paying the parents to fill that role is better than the disabled individual going without. Which is what will happen for my son if this program expires.
I attended today’s forum, and though I raised my hand early in, did not unfortunately have the opportunity to speak. What I heard in this forum was that AHCCCS did not include habilitation as an area where parents can be the direct care worker because they are concerned about the ability of disabled individuals to gain opportunities to practice working with others.
How does it help a disabled individual do that if there is nobody else willing or available to do so?
My son has gained skills that he would not otherwise have because of the work I have done with him, and everyone who works with him in the future will benefit from this because I have built opportunities for him to interact with others outside of the home into his hab goals and his hab work. We do so much work around others as part of his hab goals because he needs extensive practice with and support to acquire those abilities.
Tony and I doing hab at a game attended by others in the community to practice appropriate and necessary skills for being in small crowds.
If hab services aren’t included in this waiver for parents as direct care workers, I won’t be able to continue to give him that support for free. Because in the current economy, we will now need me to work outside the home. So what that means for my son is that if the past is any indicator, he is unlikely to have anybody else working with him. And he will not gain those skills without necessary support. And that will increase the cost and difficulty level for anybody working with him in the future.
To me, it is more important that he have the skills and his therapeutic needs met regardless of who is meeting those needs.
As a mother, I want to add my voice to other parents in requesting that the AHCCCS administration include habilitative therapy as a service that parents can be the direct care providers for in their CMS waiver submission.
Thank you for your time.
Respectfully, Ariana T
P.S. With the current waiver submission recommendation as I understood it today, starting November 11th parents will no longer be allowed to provide habilitative therapy for their children, which could leave many disabled individuals in the state of Arizona without habilitation services at that time. If you would like to submit feedback yourself to the AHCCCS Administration, you can do so at waiverpublicinput@azahcccs.gov
Tony & me, waiting for music therapy to start, June 19th, 2023.
To Sadie, Tony’s Former Lead NMT Therapist
We are so very grateful for your positive attitude during your time working with our son. We appreciate your patience, your flexibility, your professionalism, and everything you contributed to his growth. Even though I personally didn’t get to witness your sessions because your team no longer needs me back there (whoo-hoo!), it is clear to me how much our son has enjoyed working with you and I know he will miss you. From everyone in our family, we wish you every success and happiness in your new home state.
To The Special Education Director In Our Son’s School District:
Thank you for hearing our son’s needs and working with our team to find solutions that would meet his needs. <3
A Brief Note:
The next couple months are going to be pretty busy for me. Our son, as we have discussed, is transitioning back into the school environment, and this next month is going to have many extra tasks necessary to prepare for this. To accommodate that and retain my bubble for stress reduction, I am going to be taking the next month off of posting.
Some Reading To Consider
Two Wrongs Make a Right, by Chloe Liese
First, I just want to be clear this is not a comprehensive review. I’ve ended up needing to take care of some unexpected tasks today, thus my writing time is very short. And, my reason for recommending this book is equally short: I felt the author did a great job representing the intimacy needs of someone who has sensory differences, and for our family, accurate representation matters. I *loved* that this was given an honest portrayal. That being said, it’s also important to note that this is just one possible version of how sensory differences can impact intimacy as individual differences and needs will vary. The heroine of this book is an Autistic artist who falls in love with a young man who struggles with anxiety. I felt like the author’s writing style is engaging, her wit is enjoyable. The conflict that caused that heartbreaking moment of “will they or won’t they resolve this” separation upset me a bit because I personally couldn’t relate to the reasoning behind it, but I can see that as being purely a matter of perspective, because someone else may find it relatable so my opinion on that should not deter you personally. However, for my religious loved ones who have treasured beliefs that involve avoiding descriptions of sexual acts, this book is not going to meet your cleanliness standards, so heads up.
I spoke very minimal Spanish when our little man was first placed with and adopted into our family. What motivated me initially to continue to learn was our son, because I had wanted him to be able to have a conversation with his birth mom should he ever choose to want to meet and talk to her. He’s had Spanish and English spoken around him his entire life for this reason.
This morning, when as I was getting ready to walk out the door with Tony on our community safety walk, I noticed a young rabbit nibbling contentedly on the mesquite pods littering the ground. I was trying not to get close as I took pictures, so I used the zoom on my phone camera, but our mesquite-loving visitor noted me pretty quickly anyway, posture changing immediately to high alert, assessing for a possible threat.
At this point, I’ve come to expect a higher level of challenges will be facing us on as the parents of a kiddo with such specialized needs, and my emotional armor is pretty substantial and more than enough most of the time to get me through just about anything. But sometimes it can feel like I am that bunny, trying to munch away at having a peaceful life, but there’s always some crisis or problem coyote wanting to hop the fence so to speak, and it’s much harder to find adequate resources to meet those challenges when you have a kiddo with more significant needs. There are times when I can shrug it off, and others where my nervous system reacts like a bunny clambering under the gate to somewhere it thinks is safer.
We’ve had a lot of stressor coyotes hopping the fence in the past year. Nobody over here’s been eaten alive thankfully, but it’s also true that my nervous system wants a break from the stressful event parade it’s been running around in and it’s just not been coming yet. I’m sure it will, because that is life and periods of calm get sprinkled here and there even at the Quiet Crisis Next Door. But until that calmer period comes, sometimes I have to give myself a break and temporarily reduce the hab hours I am working, focusing on just the current essentials in therapy time with Tony (like his safety skills or sound canceling headphone tolerance in prep for fire drills or his tolerance of ace bandages) so I can take time off to keep my emotional system from overheating from all of this. Sometimes it’s just a lot, and I’m just a human trying to do the best I can with situations that I think could eat just about anybody alive emotionally or otherwise.
There are lots of self-care things I like to do (like my makeup), but sometimes it really helps me to read or listen to something in Spanish, because I have to focus on it so much more because it’s not my primary spoken language and it’s a lot easier to give my nervous system some room to breath if my brain isn’t as capable of multi-tasking. Watching or listening to something helps me the most because understanding native spanish speakers cuando están hablando bastante rápido es un debilidad para mi. Sometimes I focus on trying to think only in Spanish too, not just because I want the fluency (I definitely don’t have the fluency of a native Spanish speaker, though I am aiming to gain that), but because again it can stop my system from going into challenge-related stress hormone overload. I actually had part of a recent dream in Spanish and I woke up feeling happy simply because I felt that more than anything showed me how much I have gained towards my goal.
For me, it’s been such a blessing to have that bit of free time during Tony’s current ABA sessions. When I’m not having to trouble shoot a problem or clean something, I can find a few moments to watch something if I want to on my phone, or hunt down a song from something I am watching that I like. Today while I ate my lunch it was “Ana de Nadie” and the opening song for the episode I am currently watching.
I don’t have perfect answers in English or Spanish for all of the challenges life can bring. Sometimes it’s just hard all the way around. And you know, I’ve had mesquite flour before, and it gives me stomach cramps. So for my inner bunny anyways, that’s not the life I’m enjoying living for. But the good parts with my family and loved ones definitely are. But sometimes I still just need to engage in something capable of requiring as much focus as possible to prevent ruminating or over-analyzing. Maybe tomorrow it will be watching an episode of “El Amor Invencible” while I wash dishes. That is, after all, what I have for my family regardless of the stress.
I was on my exercise bike trying to pedal off some stress last week when Tony came to hug me from behind…I wanted a picture of that moment, but this is the closest I got before he was running off across the room to do something else.
