Ariana's Posts

A Case For The Indie Makeup Brands

Posted on by Ariana
My Christmas day look…reds and greens, Ace Beaute, all photos by Ariana

As I start this post, I would like to remind everyone that I am not a person who supports cancellation of a brand for past mistakes. I really admire the approach of blues musician Daryl Davis to painful and contentious differences…I know I have linked one of his TED talks on my blog before, but you can click his name for a link to an article about him if you are not familiar with his history of seeking out and making friends with members of the KKK. I feel that if we never allow others to move from a position of being punished and shunned for their mistakes that we leave no incentive for anyone to evolve their positions. So if I use a brand you personally won’t support, that is absolutely fine for you to make that decision for yourself, I will just ask that you respect that I am going to make shopping decisions based on how I feel about the quality of the product and not the mistakes of the brand owners.

This is a topic that could easily get out of control and become a novella. While the pandemic and difficult economic conditions in certain areas of the market are starting to thin the number of indie makeup brands, still there is a heavy field of brands outside of those found at Ulta or Sephora contending for your makeup money. I am sticking to discussing the eye shadows in this post because you can get decent drug store lip glosses easily, but the same isn’t necessarily true for the shadows. And, often if you want a dramatic, colorful eye look that will last all day, sometimes your money is better spent shopping from some of those indie brands. If you walk into an Ulta for example, you’re going to see colorful offerings from Colourpop, Makeup Revolution and their many brand offshoots, BH cosmetics, Juvia’s Place, LA GIRL, Milani, elf, NYX, and Morphe.

BH & Colourpop used

My personal experience is that Colourpop is usually a great choice for neutrals…but bright colors are hit or miss. Makeup Revolution and their many offspring brands- I hate working with their formula and won’t buy it anymore based on the experiences I’ve had. And now that they’ve bought out BH, I’m not even sure I’m going to be comfortable recommending that brand going forward. BH started out with some OK’ish formulas, and moved on to produce some great palettes that compete with high end brands for quality…but all bets could be off there going forward. Juvia’s Place, I generally like the quality of their eye shadows with the exception of their purple mattes…which get patchy, don’t blend as well, and are fussier to work with. LA GIRL, the shimmers are chunkier than I’d like but surprisingly good for a drug store brand…but their non-neutral matte colors don’t build, blend, or layer well. Milani, oh hell no, I hated the colored mattes formula so bad I washed it off and redid my makeup with a different brand, so I don’t even have a picture to show on that one. Elf and NYX can be weakly pigmented, fade or don’t layer well, they’re just not a great experience for me personally to work with compared to some of the indie brands. Now that could be great if all you want is a gentle and subdued wash of color, but that isn’t the direction my makeup usually goes. Morphe, some of their palettes with vivid colors perform great (the Jaclyn Hill Vol 2 colab, Cherry Cola Colab) but others are really crummy and the colors won’t blend well or will fade even with a good primer.

I Heart Revolution (A Makeup Revolution Offshoot brand) Tasty Avocado Palette…after my first three attempts to make it work, I never used it again…and one of the mattes grew something nasty! I have never had that happen even in palettes older than this one…this is one of the looks I made from the palette alone, before I decided the blend I was able to achieve was so bad I needed to go up stairs and put some graphic gold glitter lines through everything to salvage it.

LA Girl, notice that some of those lines don’t look too blended, because I couldn’t get those shadows to blend out easily and I only have so much time for doing all of this.
Looks with Juvia’s Place where I loved the quality of the products…

Again Juvia’s Place…this purple was patchy and harder to blend. If you get a patchy shadow, sometimes packing on and layering can help.

The indie brands I love the most might be different from another person equally passionate about their makeup products because I have my own aesthetic preferences, and certain products that I prefer based on how they work with my primers. I will give you a quick run down of who I think rocks my preferences, but then I’m going to finish up by giving you a couple of recommendations for determining whether or not you wanted to try purchasing something from an indie brand without an extensive and established track record. And pretty please don’t judge me on how much eye shadow you think I might have. First, I purchase a huge chunk of it on-sale. And that is what I get for pretty much every gift or special occasion…and for those of you keeping track, the VIV leggings I last reviewed back when I was still shopping at Amazon all of those years ago? Still wearing the ones that haven’t developed holes. I don’t spend money on myself in most other areas. Moving on…

Devinah shimmers…mattes are pulled from different brands, Huda, Jeffree Star, an Milan Rowe.

BPerfect and Jeffree Star mattes, Notoriously Morbid Multi-Chrome, Give Me Glow Shimmer, BH shimmer
Kraken
Melt and Menagerie

Often when I am creating a look, I pull from multiple brands and palettes, which makes it more difficult to give a specific picture for each brand’s products, so that’s not necessarily represented here. For mattes, Jeffree Star cosmetics is consistently a great performer, even for difficult to formulate colors like purples or greens. His shimmers perform well, but generally I have brands that I love to wear more when it comes to shimmers because they are more foiled or have color shifts. Give Me Glow Cosmetics is great for mattes and shimmers, and I love (love!) their purples…literally one of their purple mattes is probably in 70% of my looks with purple. I feel the same about Menagerie Cosmetics. Sydney Grace easily out performs many Ulta and Sephora luxury brands in colors and neutrals. I have never had a bad experience with Shroud cosmetics, even their pastels perform great and are opaque with one layer, which I love. Devinah produces some of my favorite shimmers and multi-chromes. Sigil Inspired has great quality mattes and shimmers, but this is a Russian indie brand that has already been hit hard as a business by what is going on, so I don’t know how easy it’s going to be to get products from this brand right now even if you are interested. Terra Moon, Notoriously Morbid, and JD Glow have fabulous shimmers. Lunar Beauty generally has good quality products. There’s a whole lot of indie brands I just have one palette from that I love how it performed, but I feel like one palette isn’t really enough experience for me to put them up in my list of favorites that way.

Sigil Inspired…the packaging, the theming, the quality of the shadows…high marks in my book!

Glamlight
Jeffree Star, BH
Notoriously Morbid, Jeffree Star

If you’ve seen a review of an indie product and you are trying to decide if you want to risk it for yourself, my first piece of advise would be to watch carefully how the shadow applies. Is the reviewer having an easy time getting it blended out? Was there a pause and a video edit skipping parts of the process while blending out a shade? If so, that could indicate that the shade is hard to work with and the reviewer doesn’t want to antagonize the brand and show that. How many layers did it take to get the shade to appear with the depth the reviewer or you would like it to? Some products only need one layer…some, you’ll be going back in the pan several times to deepen it up, if the color is even that buildable.

The first two pictures are from Fantasy Cosmetica… an indie risk I took that I ended up loving, the last one is from Eunique Beauty, and this look was ok, but the colors aren’t as pigmented or blendable in my palette as I like, and they take longer for me to work with.

While crummy eye shadows can come from anywhere, sometimes items mass produced in China can have more quality control issues than those produced in Italy or the US in my experience, so I would watch multiple reviews for a brand that is selling items bulk produced from China because that might give you a better idea of whether or not the formula is consistent. Also, be aware that many reviewers aren’t mentioning how the shadow held up throughout the day, just how it applied in the moments they were filming. So trying to find reviewers that mention wear time before fading or creasing is also advisable. I personally prefer products that will survive everything a good 12 hours of my day will throw at me, which is a big ask when it comes to cosmetics.

Also, pay attention to how other people feel about the customer service of the brand. The quality could be great, but if you get an item that arrives broken and nobody from the brand will respond to you, how the shadow would have performed undamaged won’t help you deal with that. Which is also why I recommend using PayPal whenever you can with indie brands…in case things go bad and you need an easier way to get your money back. I’ve never had to do that, but I like to be prepared for the possibilities.

Life can flash and blink away…for me, it is too short a time to spend it wearing eye shadows that don’t do the things I want them to. My wants might be different from yours, and that’s OK. For anyone who is a friend or a family member, you can always set up a time to come over and play with me and my eye shadow collection to test out something for yourself to see if it works the way you personally would want it to before you spend your money on it. Much love and hope this helps a little <3 Ari

Sometimes I pull together brands in a way that perhaps the creators involved wouldn’t appreciate in real life, but I think from a makeup standpoint the colors work great together. The first picture uses Kaleidos X Angelica Nyqvist and the Jeffree Star Morphe Collab. The second is Lunar Beauty and Jeffree Star Cosmetics.

Ariana's Posts

The Autism Awareness Puzzle Piece Symbol Controversy: My Thoughts

Posted on by Ariana
Beautiful things can be found sometimes by looking for the flowers hiding amongst weeds and thorns. All photos by Ariana.

We’re going to be taking a detour from what I originally mentioned discussing this week…but, I’ll be getting back to that, probably next week. Because I am still in burnout mode. Not just from the emotions of everything going on globally, within our local community, and within my own personal life- but because self-care is a buzz word that defies adequate placement in my schedule.

Let me introduce myself for those of you new here or just stumbling across this post because of the topic. My name is Ariana, and sometimes I say really unpopular things. This is what I look like today (makeup took a little over 20 minutes, which I was feeling really good about because I rushed through this to get to a 740am therapy appointment on time- until I realized 2 hours later while in a separate session that I forgot the mascara).

Given that I sometimes say unpopular things, it might help you to visualize me better with this makeup instead. I don’t think saying unpopular things makes me a bad person. But sometimes my makeup is an external editorial comment on how I feel like others are perceiving me based on what I sometimes say or do.

I mostly talk about makeup as an interest right now, because it’s kind of the only thing I have time for…and, if you look at today, I am often moving so fast it doesn’t feel relaxing or like self-care, and aspects of the planned process are still being forgotten or left undone. But I do it every day, because it helps me feel like I haven’t been completely (physically at least) erased by the needs around me.

Sometimes I don’t look so put together by the end of the day. Me after finishing a day of therapy this past Tuesday, a physically demanding day. The line on the side of my eye is because some strands of hair got drug through sweaty eyeshadow and whipped across my face.

I used to have a whole lot of other ways of describing myself based on my interests, hobbies, the ability to hold a job, the ability to have time off and relax. But now, I am a full-time caregiver who participates in all of my Autistic son’s therapy. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. Sunday. Monday. Tuesday…you get the point. More than 40 hours a week 7 days a week of therapy alone. That is a statement, not a complaint. My participation is mandatory because he has behaviors that often necessitate a second therapist, which insurance doesn’t pay for. And, some of his programs require doing things like physically blocking access to public roads while he’s trying to pushing towards them with all his weight and strength, something many therapists don’t feel comfortable doing. He’s nearly as tall as I am and weighs about 130 pounds.

Certainly I would not have wished for him to have these challenges just for the sake of the quality of his own life. But you see, this isn’t just about things that have been happening to him and impacting only him. I have been the one to stand in drying vomit on my clothes from a sensory related issue with one kiddo waiting to pick up the other from dance class (after of course I scrubbed down the studio’s floor while trying to comfort and calm our son). I have been the one to scrub down the bathroom walls in Cabela’s and the local library because our son was enraged and smearing his feces. I have been the one to hold him for up to 6 hours a night in the middle of the night to ensure he wasn’t hurting himself while trying to self-harm. And, before you even question whether or not that was necessary (because some Autistics recommend just letting an Autistic individual self-harm), please know that he uses enough force when he’s upset that he’s capable of putting himself in the hospital if unchecked. So yes, that was necessary. All of this is certainly not the first choice I would have made for how to spend so much of my life. But because I have done so, we have seen things like his symptoms related to sensory differences and self-harming dramatically improve. And I have written about how we’ve moved through these circumstances not to embarrass him, but because other parents sometimes need and are looking for input on how others have handled these types of situations.

And there’s more, so, so much more. You can read over 4 years worth of previous posts here to see that for yourself if you’d like. It would be so easy for someone to look at his diagnosis list and say that it’s the combination of conditions, but I am aware of individuals for whom level 3 Autism is their only diagnosis with struggles every bit as or more profound than our son’s. There have been moments where things have been so hard, and I’ve had so little support, that everything in me thought I was going to break…and the only thing that kept me from doing so is the thought of what would happen to my children if I did.

Even though I risk offending someone with what I have to say today, I want you to know I am willing to listen to and honor the perspectives of others on this, and validate feelings that have been savaged and still pulsingly ache. And I ask the same in return.

Recently, one of our son’s RBT mentioned to me that the agency she works for is planning on changing their logo because of the controversy surrounding the use of puzzle pieces to represent Autism or Autism Awareness. Look, I don’t even really have time for social media (which is part of why I still don’t have any of those types of accounts), and I haven’t seen this referenced in any of the headlines for news articles I’ve read while using the bathroom or eating (yes, I have to multi-task to that degree, drank my breakfast smoothie while doing my makeup this morning even).

So, I had to Google the controversy mentioned. You can do the same, because I am only going to be addressing a couple of things here, and I am sure there are a wide array of perspectives on this.

Some object on the grounds they view puzzles as children’s toys (not my perspective, many puzzles are marketed directly to the adults who love doing them). Some object to painful associations with organizations using the puzzle pieces in their logos. Truly it would be a horrible thing to have a parent say in front of one that things became so desperate they imagined killing their child and themselves. Even harder to have it used as part of an international campaign. Some Autistics associate the puzzle piece logos with an Autism Speaks campaign where that specifically was done. You will never find me quibbling with the idea that this would be an awful and damaging thing to hear. No matter how hard things have been for me personally, I have never for one second imagining myself harming our son that way and it’s definitely not the sort of thought that should be voiced to an Autistic loved one.

I really love our little T-Bubs, and we try to have fun when we can.

However, I feel like there needs to be a recognition on the other side that for many families, having a loved one diagnosed with Autism has irrevocably altered the parents’ lives in ways that often feel painful, negative, or downright desperation inducing. I love both of my children fiercely- it is why I do what I do- but what I do is beyond difficult and it’s not what I dreamed of for myself. “I can’t…, I can’t…, I can’t…” could become the theme for this post if I let it, because there’s a long list of things other people take for granted that aren’t even options for me at present because of what is required to provide our son with the necessary level of care and support. And it is undeniable that the demands of what I do have taken a toll on my personal health. Years of going with minimal sleep to help him in the middle of the night has definitely done some damage.

Although higher functioning Autistics often refer to their neurological differences as a “superpower,” my son is almost 10 and still has the risk assessment of a kiddo under the age of 1. Some Autistics really feel unhappy about the idea that many in society have of them that they need to be “fixed.” I think that is a luxury one can have when one’s differences don’t rule out independence. I tend to think of what we are working on with Tony as skills necessary for survival within our community. Unless something dramatically changes he will be incapable of independent living. Neurological differences can lead to great strengths, or great deficits. Perhaps it’s just because I don’t have time to do a comprehensive search, but I don’t really see Autistic activists holding up Autistics with my son’s past/current behaviors or level of functioning as an example of what communities should be embracing when it comes to Autism.

Therapy has helped improve his safety skills a lot. Here Tony is stopping and waiting as requested so I could take some flower pictures on a walk…
…and sometimes I still have to chase him down because he keeps going. Harmless when flowers are involved, not so much when it’s cars.

Yet, I personally would love to see more level 3 Autistics getting community support. When we go out in public, we never run into other level 3 Autistics. I’m just that sort of sunflower that I push ahead with what I think needs to be done regardless of how popular I think it will be within the community, but most families don’t feel like they can embrace that mentality. And even I know and respect that there are places/settings I can’t take him into because it would be considered disrespectful enough to garner significant backlash.

I absolutely feel like we need to honor and recognize that many things in our community are not supportive for Autistic individuals. Sure, groups can respect and remove logo symbols that some deem to be a painful reminder of that. But let us also honor and recognize the difficulties that are to be had by everyone involved. No, it might not feel good to hear that a parent makes significant sacrifices to help a loved one incapable of independence and that it is incredibly hard to do at times. Sometimes the truth is hard or even painful to hear, but neither side should have to pretend like their needs and feelings don’t exist or matter. And let us also remember that many people wearing that as a symbol may not even be aware this controversy exists, and they are just trying to show love and support in their own way.

And, because I would never want to leave you with a picture that is just focused on the challenges my son has since this might be the only thing of mine you ever read, here are some pictures from recent walks and outings of ours. Everybody involved has done a lot of hard work, and he’s able to enjoy a lot more in the community than he could just six years ago. Recently he’s been developing the ability to go down ladders at parks. He wants to do it a little bit differently than what his physical therapist and I have been trying to teach him, but if he can get the job safely done, that’s all that matters.

Ariana's Posts

Makeup Therapy On The Quick

Posted on by Ariana
Today’s makeup, eyeshadows pulled from 4 different palettes. 4 different brands (Juvia’s Place, Hip Dot, Natasha Denona, Nabla). 30 minutes from no make up to finished. All photos by Ariana.

Makeup has really become my own personal therapy over the past few years, a time during each day where I can focus a bit on doing something just for myself. Andy was showing one of his former coworkers some of my makeup looks a couple months ago (it’s a sweet spot in any day to know my honey loves and supports what I do enough to show it off to others), and she asked how long it takes me. So he e-mailed me that question, and I responded back 20 to 60 minutes, with the average being 40. 60 minutes is a great day where I’ve got him to help out with Tony. 20 minutes is a chaotic day where I’m running behind. Today’s makeup was somewhere in between (but closer to the running behind side), and it took me 30 minutes. And that included brushing my teeth, applying my eye cream, and minimal eyebrow filling.

Even if the end result doesn’t look complicated, I still think about it beforehand so I am prepared to move quick. Headed down the stairs…

The person he shared this with indicated that she thought that was a short period of time given some of what I do. I can’t speak to what is normal for anyone else, but I can share a few of the things that I do to keep my process flowing quicker. None of this is going to be delivered as prosaic greatness, it’s just a quickly typed set of explanations. First, I think about what I’m going to do for my eye makeup either the night before or when I am taking my shower. So, having a vision in my mind helps me to move quicker, because once I decide what I want to do I already know what products, brushes, and supplies I’m going to need.

Next, if I know I want a sharp line (and I often do because makeup is about illusions, and this one combats some mild age-related eye skin droop) I am going to take some scotch tape and line it up from the bottom of my eyelid up diagonally towards the end of my eyebrow. I will apply my shadows up top, remove the tape, and then reapply any primer as needed to the bottom lids. I often use that line formed by the tape as a guide for how to angle any lining I do on my upper lids. I often use a dark eye shadow for this.

If I am not using tape, sometimes it might take me longer because I have to be more careful about my lines, but I tend to go for a softer look when I do. I also do my eyes first because when there is fallout, and their often is, it will ruin the base makeup on your upper cheeks if you can’t “bake,” (and no woman over 40 should), requiring extra time to fix. I will often clean up any left over eye primer and fallout from the eye shadow just by smudging it off and around as I am applying my foundation primer.

Many people use a wipe or micellar water to do this, I just feel like that’s not really an extra step that’s necessary unless there’s a lot of foiled shimmer fallout or glitter (because most mattes are going to blend into the primer and be visually undetectable at that point, but for sure any small amount of residual color smeared in the primer would be covered by the time the foundation is on). So it saves me time to do that. And I will use the sweeping motion of my finger as I am applying the primer under my eyes to clean up any lines I want to on my eye shadow.

no tape
fall out and left over eye primer on under eye area
Swiping and smearing it away with the foundation primer
All cleaned up and ready for foundation…
…but shh! Don’t tell Wayne Goss I do it this way 😉
Pouncing it out with a sponge.

The next thing I do is definitely not Wayne Goss approved (he has recommended buffing in small amounts of foundation and layering it), but this works for me and it’s fast. The foundation I use is Maybelline Dream Urban (I like the performance of the IT CC foundation it is a dupe for better, but that product makes me break out). You need to get all of the coverage you want on with this foundation in one quick shot before it starts to dry because it’s going to not look so pretty if you try to layer it.

So, I tend to mix a shade based on how much sun I’m getting, so I keep 4 different foundation colors on hand. One of the quicker ways of doing this for me is to lay down the darker shades in areas of my foundation I want to be darker. Some people do something similar by applying contouring under their foundation, but I don’t really want that intense of a process or dramatic of a change in the lines on my face, so I do this. I will quickly blend it all out using a brush, and then pounce a makeup sponge over it so that any excess is absorbed and it appears a bit more cohesive with my skin texture.

The last point I want to touch on is products. Sometimes your products can do the work for you which can save time, but often you’ll pay a much higher price for that. And sometimes, you can find quality products at lower price points. Sometimes it takes experience with brands to know which formulas you like to work with and which you don’t. And often, I use multiple brands in one eye look because I have something specific in mind color-wise that isn’t going to be found in an individual palette. I tend to prefer using eyeshadows I know are going to blend well without too much fuss because I don’t have the time to mess with minimizing patchiness.

Each of these three similar looks is created with different products at different price points. Can you tell enough of a difference from the pictures to say which one was high end eyeshadow? Which eyeshadow cost the least? Which ones were easiest to work with? Read on for a break down.

Picture 1: Colourpop by the rosé palette, cheapest, $14. Super easy to work with, the lid shimmer is my favorite of the three different brands used for this particular look. Not all colourpop palettes perform as well as this one, so buyer beware! Just because you love working with one palette from a brand doesn’t mean you’ll love the way all of their products work.

Picture 2: Blended Girl Cosmetics, $27. This palette isn’t currently available. I didn’t really have a problem with the way the mattes blended, I really liked the color story for a warm neutral palette, and I liked all but one of the shimmers (which was hard pressed and more difficult to build up and I ended up needing to pull in a highlighter from a different brand to get the effect I wanted).

Picture 3: Charlotte Tilbury, 2 different palettes used, over $200 worth of product at regular price- I bought mine on sale. Blends on like the kind of dream that makes you warm and happy when it comes to the mattes. This formula is definitely friendly to someone who doesn’t have a lot of experience blending out eye shadows, and might only want one “go to” palette. But to get the depth and shades I wanted, I needed more than one palette. And at the end of the day, the colourpop one is close in terms of performance quality.

So…it’s all about what you are willing to pay for if you want this kind of look, but you don’t need to pay a lot to get a neutral look with brands that blend well. And products that you find easy to work with are critical to moving through your makeup quickly. But If you want bright, dramatic colors, not every brand does those well and most drug store brands won’t deliver there. Which is why next week we’re going to take a dive into why I tend to prefer the indie brands for eyeshadow.

Ariana's Posts

March Gratitude & Some Reading/Viewing

Posted on by Ariana
All photos by Ariana

Gena

I know how important a certain level of on-line privacy is to you, so my respect for you and for that is the reason I am keeping the details here scant. You and I both know what was done, and while I might not share those particulars publicly, I certainly believe they are worthy of a more detailed lauding. A life spent typing “thank you’s” can’t even capture the feeling. For taking so much time you didn’t really have while looking after something dear to our hearts, for going out of your way to help fix something I was struggling with…thank you just is not enough. But it will have to be for these pages. You have stood by me and valued me no matter what my personal beliefs are. You have listened to me grieve. Those alone leave me in your debt. This…yeah, I can’t really repay this any more than I can those other invaluables, but my dear friend, I will do everything I can to be there for you as you have been there for me. Much appreciation and love <3

A Couple General Thoughts

Y’all, things are just a heartbreaking mess all over the place right now. I can’t even begin to address adequately how horrifying I find war to be. Regardless of whatever stressors I have going on, I am at least typing this from a safe place- which is a luxury far too many people don’t have right now. I am grieved beyond the point of even knowing what to say that we as a species are continually engaging in such atrocities.

And I am personally maxed out on focusing on hard things. I owe a lengthy set of posts to Tony’s speech therapy programs and the fabulous Miss Jenny (his current speech therapist, pictures are taken and everything), but good golly I can’t spend too much time writing about anything more serious right now. I am going to briefly touch on something important after this note, but…if I flat out don’t take a break writing for the next month, I’m probably just going to focus on putting together a few posts with more insight I think might be helpful to family and loved ones as regards to how I do my make up and why. And then, probably come the first weeks of April, I’m going to be headed in to some speech updates.

That being said, I am reading escapist stuff right now that makes me happy. But it might not align with the values and views of some of my loved ones reading this blog. Which leaves me in a delicate place for making recommendations, and I’m still trying to navigate this space where I know some of us don’t agree about what is morally acceptable in writing while showing respect for a variety of positions. At some point, it’s always possible my recommendations might not satisfy everybody’s personal preferences, but as always, you are free to ignore any recommendation I make that you feel doesn’t work for you personally.

Some Reading & Viewing To Consider

Be on the look out for these things: asymmetrical, blurred borders, uneven pigmentation
Changes in skin texture developing
Take pictures with a ruler! These are all pictures of the same lesion on my back.

I really don’t want to get bogged down on this, but I feel it’s important to remind everyone to pay close attention to their skin. I had something cut out today and on it’s way to being tested, and if it ends up being something less than desirable, what will make all of the difference is that I was paying attention to my skin and it only showed up 6 days ago. I am putting up some links for websites with brief overviews on what to look for as you check your own skin down below this paragraph, the pictures I am showing here are from what was removed on my back. I recommend checking your skin often, taking pictures when changes are noticed, with a ruler. After only a few days on this one, texture (started out smooth, went scaly by day 5), color, pigmentation, size (7mm as of last night) were changing on mine rapidly. If you see those types of things, of course it could always just be something strange looking but benign. However, it’s better to be safe than sorry, and you should head yourself in to have someone look at it.

Web MD Skin Cancer Explanations

Melanoma Warning Signs from the Skin Cancer Foundation

American Cancer Society Skin Cancer Image Gallery

A Few of my Favorite ASMR Videos

There was a study done recently that indicated that people who experience and benefit from ASMR are suffering from anxiety or are neurotic. I really think people with chronic high stress also should have been included in this. Let’s be real, you don’t tell someone with a stalker that their feelings of tension and fear are unwarranted, but it’s going to do the same damage to their nervous system. So, for those of us who benefit from ASMR when life gets ugly, these are a few of my favorite videos (although I am giving just the name of the creators, I did pick specific videos I loved for each link):

Nefertiti ASMR

Latte ASMR

Jocie B ASMR

ASMR Zeitgeist

Trinity J ASMR

ASMR Bakery

StacyAster

Annura’s ASMR

Tabuhan ASMR

And, One Quick Escapist Recommendation For Loved Ones Needing That

Beauty and the Werewolf, by Mercedes Lackey

This particular book will meet the content standards of my most conservative loved ones, but not every book in this series will. This book, like the others in the series, is a creative mash up of multiple fairy tales. I did find that I could figure out who the main bad guy was pretty early on, but that’s often a problem I have when reading. I felt like this was a creative and imaginative spin on the fairy tales involved, and I found it to be a quick but satisfying escapist read.

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“No Pressure”

Posted on by Ariana
Tony cuddling into me while I was trying to take a picture of us. All photos by Ariana

Andy and I watched Encanto for the first time this past Sunday, broken into sessions wrapped around the chunk of hours I needed to work with a new habilitation provider. As I listened to Luisa sing “Surface Pressure,” I felt how aptly and concisely it seemed to capture the way I feel so much of the time lately. “I don’t ask how hard the work is…I take what I’m handed…under the surface I feel berserk as a tightrope…pressure like a drip, drip, drip…tip, tip, tip…grip, grip, grip…tick, tick, tick…watch as she buckles and bends but never breaks…never wonder if the same pressure would’ve pulled you under…no cracks, no breaks, no mistakes, no pressure!”

So many obstacles that need a work around in my world cannot be so condensed in real life, though perhaps the summation thereof could be. Not always my strong point, that. But, perhaps if I practice…

Much of our therapy work is focused on helping him to habituate safe behaviors when confronted with things he doesn’t like.

There’s not much point in public speculation about why the current administration at the school across the street from us (Tony’s home school) doesn’t want him using their front public office bathroom anymore. The only thing I can say is that it wasn’t related to behaviors of his in the lobby. Because before he was turned away, the fact that we were often the only two people in there wearing masks was one of the more conspicuous things about us. Of course, he did flap sometimes, and he does use AAC speech technology, which would be also be noticeable, but he had his first meltdown ever in there when we were turned away a few weeks ago.

He’s been using that bathroom a few times a month for the past 6 years. He’s known about the existence of that bathroom since his sister was a student there, and he prefers it to the bathroom at the public pool nearby (he’s scared of how loud the hand dryers are). So, this created some extra therapeutic and community pressures, the first being how to explain this in a way that would keep Tony from escalating his behaviors every time we passed the school.

He’s a big guy! Currently taller than our friend Miss Emily, and on his way to passing my height also…

There are three possible explanations I could have given him, and I chose the one I felt I had the best chance of him believing but would cause the least amount of anger in him. I believe the truth as you understand it is always best to be used with a kiddo on the spectrum, but sometimes for Tony it’s more useful to only give him the parts of the truth he can calmly process. Given that we are two years into this pandemic, we were almost always the only ones in there wearing masks, we’re just now getting turned away, there are no restriction signs, plexi partitions, or other signs of pandemic related infection control measures…I chose to stick with emphasizing that it was because he isn’t a student there. I was counting on him not understanding that the UPS driver who’s sometimes used that bathroom before us couldn’t possibly be a student there either. A parent with a kiddo who could have latched onto that and understood the significance would have needed to use explanation number three in my opinion.

Tony looking back at the school office while we talk about the new restrictions. He understands more than most people realize, and he definitely has strong feelings about all of this.

I made sure for the next week we walked by the school after hours of operation, reminding him multiple times each walk that we are not able to go into the office anymore. We talk bout the why, and that the current administration absolutely has the right to say who can and can’t use their bathroom, just like he can say who he will and won’t share his popcorn with. This kind of explanation is most effective when he’s calm. If he’s emotional about a “no” he wasn’t expecting, reason lacks efficacy. I gave him limits for where he can go, and explained to him what behaviors are off-limits for when we pass that school office (any pushing or screaming). After a week, when he was calmly following my directions, we resumed passing the school during the day.

He likes standing at the gate next to the office and looking in at the kids, which we will allow as long as he is behaving calmly.
Walking past the school…
passing the fencing around the school’s ball park space and on our way home.

I also paired this with a renewed effort to help him tolerate the pool bathrooms. I talked to him about how I understood he was afraid of the noise, and that I would let him hold my hands while we were in that bathroom so that he could be sure I’d go nowhere near the hand dryer and accidentally trigger it. By respecting his fears and not dismissing them, I was able to get him to agree to start using that toilet and now he is requesting it when we pass on his speech device.

This is the face of a kiddo who was just told he couldn’t go to a park he really wanted to play at but still managed to stay calm and not do any pushing towards it…and in case you are asking yourself why the heck the extra skin on my neck is visible in some pictures and not others, it’s mostly visible if I’m leaning.

We continue to advance our therapy programs for helping Tony tolerate “no” in the moment, but generally unless we have no other choice, we’re focusing right now on telling him “no” for items that have a lower emotional value to him. The goal is to progress up until he can tolerate a “no” for highly desired items in the moment and behave appropriately. He will definitely get there, but until he does, a “no” for an item that he’s grown to count on as part of his routine for so many years has to be carefully worked around in a way that gains his cooperation while showing respect for what others in the community want.

As our family’s schedule has changed with Andy’s new job, Tony’s routine has been shape shifting, which has made him temporarily more combustible- and all of that puts “pressure” on me. As I have considered how I feel internally about all of this, I decided there were some weights I didn’t want to pick up right now.

Instagram, for one. Honestly, in what little spare time I have I’d rather binge read Julia Quinn’s Bridgerton novels while listening to Barlow & Bear belt out “Burn for You” than spend time defending my brand choices in the comments section. I’m not interested in being an influencer, and I’m not interested in supporting community-driven cancel culture, so I’m not stopping using Jeffree Star cosmetics, Ofra, or Juvia’s Place. I know about the controversies surrounding those brands, and while I don’t approve of the specific actions, I just think if we take away people’s livelihoods because they’ve made a mistake or done something offensive, and the only place we leave them to go is the sewer, nobody has an incentive to grow or be better. So, I’m going to hold off on setting that up for a time when it won’t drain me so much to navigate that kind of on-line negativity.

I’m just a woman who loves her makeup and I loves using good quality makeup. And I would like to be able to share some of what I know with my family in friends here. I am more also than just the machine who powers through day after day of therapy, so I am going to make some shifts in my content on the blog. I will continue to have at least one post a month about our therapy work or a perspective piece, or something from what we’ve done in the past to get us where we currently are. But I’d like to share more of the happier parts of my life, so I’m going to put in one make up related post a month. And I may decide to put more of my poetry up. If I do, I think I shall cite the influence of what Ken Hallett did on his blog. So many of my older poems are darker though, so it is something I will think about a bit more about how I want to proceed with that. These times are dark enough as they are.

And so I can blow off some of the pressure related to the contents of this post, I’m going to tie things off with a few comments on some of the makeup I’ve worn and shown this month.

If you could see my leggings, it would all make sense:

I tend to decide the colors I am going to use in my eyeshadow based on the colors in my leggings. For this I used the P. Louise Watch The Queen Conquer palette (LOVE IT!), JD Glow’s Peachy Keen on the lids (Obsessed with it: this shade is a peach with a lime green duochrome that doesn’t photograph well but is stunning in real life, not even changes in lighting show the sift well), and Give Me Glow’s Electric Unicorn (LOVE IT!) on my inner corner and right underneath my eyebrow. My lippie is Notoriously Morbid’s Real Hot Girl Shift (love it), and I have blended two blushes, Natasha Denona Mini Bloom (like it a whole lot) and Milani Luminoso (Love it!). Highlighter is Alamar Cosmetics Flex Alert (Adore it!).

Finding lightning that shows the colors accurately is tough and sometimes not possible.

Sometimes a different type of lighting helps show the colors more accurately (first picture, eyeshadow shown is all from the Jeffree Star Blood Lust Palette (one of my all time favorite palettes), and sometimes nothing helps (second picture eyeshadow entirely from the Sugar Drizzle Butterfly palette (love the shimmers, the mattes are meh). All of the pictures I took of this Sugar Drizzle look died in comparison to how it looked in real life.

And it’s not just the eyeshadow that can seem entirely different with lighting. Here I am wearing Oden’s Eye Hela palette (new to me, love the color story, just got it for Valentines day, so far seems good but no official opinion on the quality yet) and Notoriously Morbid’s Things Hidden highlighter (love it, but it does have chunks of glitter that aren’t for the faint of heart). Notice how you can’t even pick up on the highlighter in my usual picture place (I take most of my pictures on my way down the stairs to start our therapy day). Both the eyeshadows and the highlighter seem washed out by the sunlight coming in from the window at the top of the stairway hall. Lipstick is Lancome trendy mauve (like it).

When a friend gives you a gift you love:

My good friend Gena gave me a gift card for Christmas, and I used it to buy myself the Huda Beauty Rose Quartz palette. All of my softer looks from this month came from that palette…I think it’s my favorite palette from that brand. The only thing I don’t like about it is the glossy shade love stone…I really dislike that particular shade’s formulation and it doesn’t have any place in the way I use and wear my make up. I only wear glasses for distance, so most of my pictures don’t have them unless I am walking in the community or getting ready to drive, and that makes it easier to show what I did with my eyeshadow anyways. Lip product in picture 1 Maybelline’s Super Stay 24 liquid lipstick in So Pearly Pink (it’s pretty good), picture 2 is Natasha Denona Amorosa (like the color a whole lot, but the bullet broke, which always makes me grumpy when I pay that much for a lipstick), and picture 3 is KimChi Beauty Marshmallow Butter Lippie 04- Nineteen (it’s ok, the color is not my favorite and that is my issue rather than the quality, but the color works well for some looks).

Trouble Shooting Something:

Ok, this was something I got myself because I thought it was a fun concept and might be a useful “one and done” palette for any future girls only vacations Hannah and I get to take (since it has blush, highlighter, and eyeshadows in one palette). I knew after I swatched it that the hardest shade to work with would be the blue, because it has a translucent base. If you want this or any other shimmer with a translucent base to show as or more vividly than it does in the pan, you have a couple of choices. I put the darkest matte underneath it in this photo so that I could see how workable it would be with palette only options for a vacation. You could do that, but a stronger option would be to use a black liner or a black eyeshadow as a base underneath, which would pump the color up. The other shadows I think are surprisingly nice, but the shimmers in the ears and the arms are harder to get out and I recommend a sponge tip applicator.

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Valentine’s In Pieces

Posted on by Ariana
The roses Andy bought me for Valentine’s day. All photos by Ariana

With most every other post I have ever done about how things feel from my side, I add some sort of statement within that post acknowledging that I completely understand and do not judge people for feeling that the challenges our son has are outside their comfort levels when it comes to personally helping out or being involved with his care. That’s exactly why in his early years, I wasn’t directly approaching anyone for help, and I wasn’t surprised when most people who initially offered help backed out once they were given more detailed information about what specifically was going on with him. Truly I have always supported that, because it’s better for everyone involved if Tony’s not left in the care of someone who doesn’t feel comfortable providing the support he might need.

I didn’t provide that kind of statement last week. I still do and always will feel that way, but I also think it’s important for people to realize that when someone is facing the kinds of things we have been, and doesn’t really have a lot of support for certain things, they still need the people around them to validate how dark and isolating that can feel. How desperate things can feel. Being understanding of other people who chose not to help didn’t decrease how brutal any of this was on me or what I was going through as we were helping our son through all of this. I have been pushed far past the point of anything I possibly ever thought I could endure over the past several years…and still I am here doing the best I can every day. For me it was enough to say that at many points it felt like I was going through my own private hell.

Me and Tony on a community safety walk. As the person who ensures Tony’s safety and blocks when required, I have to be present for and participating in all therapy programs outside of the house.

When the parents of a loved one with intensive behavioral challenges looks towards how they are going to coordinate the celebration of a couples only holiday, the first questions are about scheduling and resources. For us, Andy works in healthcare, and the new job he started this past month has him working well into the evening hours. He was already scheduled to work for Valentine’s day, but even if he weren’t we knew that his sweetheart of a sister Randi (who is very comfortable watching Tony) would understandably be doing things with her own spouse. We didn’t want to ask her for coverage the day before out of respect to her religious beliefs, and the rest of the days of the week had therapies scheduled until 630 or 7pm every single night. I never want to tell therapists to take a night off for a non-holiday night, because that penalizes them and shorts them pay for us not being able to celebrate the same day as everyone else.

The question some of you might have is “what about Respite?” For those of you who don’t know, respite is where the Division of Developmental Disabilities comes in and pays someone minimum wage to babysit an individual with developmental disabilities. We do have respite benefits…on paper anyways.

Emily was the only person who was ever willing to pick up any of our respite hours, but that was very short lived (a few months only, and ended a couple of years ago) because she needed to use those hours for higher paying opportunities. What we have found is probably not all that uncommon for families of an individual that is considered lower functioning: if someone getting paid minimum wage has the choice between babysitting our kid or babysitting a much higher functioning child, they are going with the higher functioning child every single time. Every. Single. Time. Tony has had ALTCS and DDD for more than six years now, and no other respite provider has ever been identified who would take on any of those hours.

Tony is working really hard. He’s starting to take no for an answer sometime without self-harming or trying to push his way towards what he wants. In fact, his incidence of self-harming is usually pretty low in general these days, and anyone who is watching him is instructed to give him any food or TV items he requests because this eliminates most reasons he reacts that way. But he’s not always cooperative when he’s asked to do something, and he usually doesn’t want to keep anything on but his underwear in home…and those last two items are more than enough for many people to loose interest in being his respite provider.

Tony refusing to get dressed for a walk he wanted to go on because he was upset Casandra had been out sick the week before…
He’s gaining a lot of cool skills, but he still likes to try and take control of every situation he can. Pushing the cart today so he can pick all of the directions…

So, we had to look at the therapy meeting schedule next, because we saw that our next best opportunity because of Andy’s work schedule fell on the 15th, but that a clinical supervision overlap meeting was scheduled. While I discussed us being able to step away for the last hour with the team (my participation was actively needed for the community safety portion), I also know plenty of things could disrupt that.

From a text I sent my sister…Andy dipped those strawberries himself, which made them allergy safe…and meant more to me because of the time spent in doing so. Andy’s wearing a mask because we had a therapist in home until 530pm…yes, even on Sundays we are doing therapy!

What we ended up doing was Valentine’s in pieces. For me, there is some sentimental value for Valentine’s day because Andy officially proposed to me on a Valentine’s day. But, if a couple only celebrates each another one day a year…are they really celebrating one another? Although the job Andy just left behind made it pretty hard for us to spend time together as a couple or a family, he and I still tried to do little things on a regular basis to show the other person that they are valued. So, I never really need a big production on Valentine’s day, but I do want us to be able to have some time together alone.

Small things can be enough for me, but even those had to be pieced out. We found some of that alone time on Saturday evening after Tony was tucked in, half an hour of it on the balcony eating chocolate dipped strawberries and dancing on Sunday evening that we paid Hannah to cover for (she’s approaching 16, she’s very comfortable assisting her brother as long as we are in-home to help her out if anything happens), and then our half an hour together during the last part of Tuesday’s therapy session (the time community safety took that day decreased the amount of available time).

That set up isn’t considered traditional for this holiday. Families such as ours often can’t be. For me, being able to find happiness in that came down to letting go of my expectations for what Valentine’s day (or any holiday for that matter) should look like. And that’s what I recommend to other families who haven’t already arrived at that place: realigning or eliminating your expectations altogether will help more than anything else. Other supports may not be available. We personally may not ever be able to leave the house for a restaurant or to go dancing on that holiday ever again. So we find different ways to help each other feel appreciated and loved, and we do what we can quietly at home. Valentine’s day might be broken into pieces, but it still felt heavenly for us to have those little bits of time together.

Saturday
Sunday
Tuesday
I wasn’t feeling traditional with my valentine’s makeup this year either for our special moments…the closest I came was on Tuesday.

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Revisiting Moments of “Grief and Rage”

Posted on by Ariana
Sometimes I want people to know what our world looks like through my eyes. These are my eyes from this morning, all photos by Ariana

Nearly 3 years ago, I shared with those of you reading our blog at that time some words of the hilarious guitar goddess Mrs. Smith to describe some of my feelings about some of the things people say to us about the circumstances we are in. At that time, I shied away from saying that I personally could use the word “rage” to describe what I was feeling. While in general I do strive not to dwell in such an intensely negative emotion, I am now in a position where I can reflect that I really didn’t even feel permission to use that word to describe my feelings.

I knew it would definitely be considered socially unacceptable for a woman in our former church to even hint she could feel that way, but as Elsa Sjunneson noted in her essay “How to Make a Paper Crane from Rage,” society in general seems to have an unwritten subtext that as the mother of a profoundly disabled child, (and here I will substitute the word I would use to say exactly how limited I believe the scope in my feelings should be as viewed by others, because Elsa definitely used the word rage), “my [anger] is supposed to be small. Manageable. Pretty. I am supposed to fold it down, make it something to consume…” Something that others will find eases their comfort level. Because in having a child with disability I have already pushed at the limits of many levels of comfort and am often seemingly expected not to express feelings about the harder aspects of this that could discomfit others, including what it’s like to experience a lack of adequate supports.

So I certainly did paint some circumstances with a heavily impressionistic style three years ago, holding them at such a distance as to be blurred and obscured, leaving indistinguishable the depth of my wounds. But things that are said and done to families such as ours (even if unintentionally so) can leave them like Mrs. Smith, feeling trapped in a dark place, disoriented, abandoned, and smearing their makeup as they try to wipe away the tears- but certainly not in the farcical manner Mrs. Smith has portrayed those types of moments.

The things that have been said to me range from the unintentionally hurtful (which can still drape a heart in grief) to the deliberately discriminatory. I’m not really going to bother to address the latter type here. Though it is the most likely to provoke a feeling akin to rage, as anyone who has ever discriminated and everyone who has ever been discriminated against knows, people doing this type of thing often have ways to mask what they are doing that can pass a legal inspection.

I am going to chip off a tiny piece of that three years old word painting, and show the preliminary sketch of what lay behind the stories I did relate three years ago. And it involves more moments than I would have liked with someone who had approached me to let me know I was to never ask them to help with Tony (and I hadn’t ever asked these individuals before I was told this from them) coming up to me on later dates and saying, “So what did you do for [fill in the blank here with a holiday or special occasion]? That must have been so great for you to have a day off from everything you have to do and get to relax and enjoy yourself. You know you really deserve that!” And then they’d wait smiling for me to answer.

Crickets chirping. That’s what I wanted to answer.

But then I often found myself biting my tongue so that I didn’t say, “you personally don’t feel comfortable helping out with our son…so exactly how many people do you envision that we can find who do that could have made any of that possible?” I would settle for taking a deep breath, and letting them know that I stayed home and taken care of my kid. And then I would walk off.

By and large, special occasions are long dead in my world, y’all. At least as they used to exist, and how they still exist for many people in this country.

Many people who ask that type of question have never made a declarative “don’t ask me” statement, they just aren’t really aware of exactly how challenging it can be depending on what is going on with a kiddo- perhaps extreme sensory differences, nonexistent risk assessment, additional size for the age, the capability to plan diversions to get something, other more intense behavioral challenges, or all of the above- to find anyone who is not celebrating themselves and feels comfortable to babysit.

People often innocently ask about Tony’s friends in the same manner, and I have to tell them he doesn’t have any really. Generally other parents don’t feel like Tony would make great friend material for their kiddos…and certainly, they have to make decisions based on what they think is best for their own child.

But, this isn’t so much a post about my thoughts regarding these types of moments, it’s a post about my feelings and what other families in our circumstances might be feeling…and ways I think each of us can be optimally supportive. I find that right now it feels most comfortable to me to use the words of others to paint a picture of what my feelings have been. And in homage to Mrs. Smith, I am going to borrow a few lyrics from some fabulous heavy metal songs. And I warn you, this mash up could feel as dark for you to hear as can the musical style these lyrics come from. But I think it is something real that is felt in the heart of many parents and caregivers of profoundly disabled loved ones, and it deserves to be heard.

The view from Tony’s eyes is just as important as mine, but I still have to do a lot of guessing about that because he still prefers to communicate directly with us only about things he wants. Me & Tony last week.

Our journey started out with what Tony might have been feeling as judged based on his actions, seemingly in a similar place to Mrs. Smith’s rock journey as she was belting out Metallica’s “One.” “Darkness imprisoning me, all that I see, absolute horror…trapped in myself, body my holding cell.” Children with extreme sensory differences walk in their own nightmare, and hopefully someday Tony will feel more inclined to tell us exactly how he was feeling, but based on his actions, we know much of it was intensely negative during his first few years.

Then we move along to a group singalong next, where Tony’s singing “tell your children not to hold my hand, tell your children not to understand,” as adults around him sang “not about to see your light.” And I whispered “But if you wanna find hell with me, I can show you what it’s like.” (Danzig, “Mother”) To this, many might growl back to me a chorus of “hush little baby, don’t say a word!” (Metallica, “Enter Sandman”).

And then perhaps I might sing a jumbled medley along these lines: “someone take these dreams away that point me to another day,” (Nine Inch Nails, “Dead Souls”) “anxiety’s attacking me, and my air is getting thin, I’m in trouble for the things I haven’t got to yet,” (Megadeath, “Sweating Bullets”), but “I will remember the love our souls had sworn to make, now I watch the falling rain,” (Pantera, “Cemetery Gates”).

But at the end of the day, I don’t want to be forever weeping or internally screaming “angry again, angry AGAIN, ANGRY-OW!” (Megadeth, “Angry Again,” italics and caps emphasis mine). I have personally come to prefer the view of the Stoics on matters such as these, which involves focusing on what I can control rather than what I can’t, while doing what I can to embrace the most positive emotions possible. Not everyone is ready or feeling able to seek a more tranquil place about any of this.

Something I would like to share with those of you who are new here is how I would recommend those types of questions be framed, and that involves being mindful that the parents of an individual with certain disabilities might not be having any kind of special occasion. Because even though so many of Tony’s intense behaviors are either dramatically improved or extinguished, our Valentine’s day celebration this year still is going to be only a short and quiet dinner (that could easily get interrupted or ended) on the balcony during the last hour of a clinical supervision overlap on Feb. 15th.

So perhaps maybe ask, “Do you have anything you’re looking forward to coming up?” Or maybe, “What was the happiest moment you’ve had recently?” And when it comes to friends, unless you’re a therapist who needs to know, maybe just go with “what does your kiddo like to do?” Because they might not have friends. And the happiest moment anyone in that family is having might not be a holiday, it might not be a birthday…and it could possibly lead to a parent or caregiver of a disabled loved one feeling grief or rage to assume differently.

This may be how some of this looks from my eyes…but it’s always a great idea to find out the specifics of what being supportive looks like to them directly from a loved one or community member you know in similar circumstances.
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February Gratitude & Some Reading

Posted on by Ariana
All photos by Ariana.

To Eowyn

The razor thin edges on so many words, the shattered shards of a strong divide, coated thickly with the dust of nearly a decade replaying only echoes of it all… a formidable array of obstacles that would have dissuaded many from trying to bridge such a potentially jagged and emotionally fraught gap. Thank you for having the courage to do it. I am completely overwrought with words that hail meaning down, smashing the previous layer into a useless slush and I don’t even know how to wring intelligible prose out of such a turbulent onslaught of gratitude in this moment. To have us now in communication every day, and to find that the years have changed us both in such astonishingly similar ways, has been an unexpected gift that nothing I say here can adequately value. I honestly have never dithered so badly as to the crafting of one of these notes, and it is a testament to exactly how overpoweringly much this has meant to me. I love you, sis <3 and thank you.

Some Reading To Consider

This month’s recommended readings are a bit of a rabbit hole I went down. I first read the article, then noticed that the author had written some books, and then after reading one of them, I ended up listening to his interview on the Front Row Dad’s podcast so that I could understand a bit more about his own journey as a parent of an Autistic boy. We’ll be starting first with the article:

What Is a Life Lived Entirely for Another? By Erik Raschke

I really feel like this is an essential read for anyone who knows someone with a significantly disabled loved one. In this article, Raschke interviews Johanne Powell, who spent many decades of her life as the caregiver of her daughter, born with a rare condition that required a lifetime of total care. I wish everyone in our community could internalize her words when she says, “people would tell me, ‘God gave you a child like Siobhan because you can handle it.’ I always tell them where to stick it up their arse. I’m not designed to handle this. I don’t want it. I didn’t ask for it. I do it because there is no other choice. Caring for Siobhan was left up to me, and that is not what I am good at doing…at all.”

Nobody wants that level of disability for their child. But beyond that, a child with significant challenges often forever alters the lives of the parents, leaving them to deal with situations that are incredibly difficult and isolating. The first part of my day today was a rush of therapy that had me out the door around 740 am (ten minutes later than I should have been because our little man was melting down) to meet Nicole for one session, and by 1130 I’m in another therapy session, dealing with Tony melting down in the front office of the elementary school across the street from our house because the woman at the front desk told us he could no longer use the bathroom there. He’s been using it for about 6 years now, so he definitely didn’t understand why this change was occurring, and he kept trying to push his way to it, screaming and stomping, and after roughly ten minutes of this when I finally managed to get him to agree to leave the lobby because he’s far too big to carry out these days, he started trying to smash his head on the brick wall outside the office door. After another five minutes, I finally got him to calm down enough to walk safely home.

740, going down the stairs on our way to get in the car…
1155, after Tony calmed down enough to walk home. Already feeling like I have taken a beating from this day!

And that is my day not even half done. I cherish my son fiercely (as I do our daughter), but I now swim in a seemingly endless sea of moments like this or worse, and I somehow have to navigate it each day with my sanity and family intact while helping Tony progress and being present as a parent to our other child. Most of this has left me feeling like someone told me that in gaining parenthood, I needed to personally rip up every other dream I had for myself and strike a lit match and hold it to the fragments so that I could watch the remains torch. Like the mom interviewed in this article, I do what I do in all of this so that I “can feel good about” myself, because I agree with Johanne that “a clear conscience is the best coping mechanism.” I will probably have a few more specific things I want to add about this topic next week, but what I would hope is that anyone reading this post who is not already a caregiver would take the time to place themselves in Johanne’s shoes, in my shoes, in the shoes of any other parent in a similar position, and to spend some time thinking compassionately about exactly what decades spent in this manner could do to a person. You can click on the article title for a link.

To The Mountain, by Erik Raschke

I learned about this book by reading the brief bio about the author of the article mentioned above. Being curious, I bought a copy of the e-book from Google. This is a novella length story about an autistic boy who has been taken away from his father, but goes missing after the van being driven by one of his attendants crashes in a snow storm. Much of the action focuses on the efforts of the father to find his son and the son’s efforts to survive. According to the author, some of the story line for the book was inspired by a real-life story that he heard about an autistic boy who was taken away from his single father, and that the personality and traits of the autistic boy in this book are largely based on the author’s own son.

I found this to be a well written and compelling read. I actually cried at a couple of points while reading it. I don’t want to give spoilers on the ending, but I will say that it leaves many plot elements untied, and I think that is fitting. There often doesn’t seem to be a neatly tied “happily ever after” that is even possible for parents struggling to care for a loved one with significant behavioral challenges. I have found that I have to focus on thinking about one day at a time and what I need to do to progress our family for that one specific day, because if I think about what could happen to Tony when I am gone…honestly, the scenarios are too painful for me to dwell on a visualization of them. Part of what makes this book such an interesting read is how well the perspectives of both the autistic son and his father are used to weave together the story. As such, readers can see a bit about the struggles for both individuals, and for those reasons I am recommending it to each of you.

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A Quick Spotlight For Hannah’s Drawings

Posted on by Ariana
Hannah, currently 15, selfie and all drawings by Hannah.

I am a woman richly blessed with two beautiful children, though much of my writing here focuses on the needs and circumstances that have arisen from only one of them. Hannah’s participation here has always been at her discretion- she can contribute what she would like or not, as she feels inclined. Regardless of what she chooses to contribute, she is deeply loved and will never have to do or be anything specific for me to be incredibly proud of her.

She loves to draw, as some of you know. She has taken three pictures of her recent drawings (one only partially finished) for me to share with the family and friends here. And so I am going to leave this post here as it is and finish with the drawings she would like to share, a brief spotlight on our beautiful girl, whose birth forever changed and expanded my personal definition of love.

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Key Moments From Our Latest COVID Quarantine

Posted on by Ariana
I was watching a Theresa is Dead video when I screenshotted the PCR results, all photos by Ariana.

Andy actually wasn’t the first person in our family to develop symptoms, nor was he the source of our exposure- though he was the only one to be PCR tested because of his job. Two days after I got my new piercings, our sweet Hannah had brief unmasked contact with her boyfriend…who developed symptoms the very next day. Testing confirmed he had COVID, and then Hannah’s symptoms started two days after that. Though, this person also wasn’t our family’s only possible exposure source that week. One of Tony’s therapists notified me the same day Hannah’s boyfriend developed symptoms that she herself had just received a positive test result and had started having symptoms the day after she last worked with our son.

I wish I didn’t have to stop right here and interject the following statement, but given how disparate the views on COVID infection are in our communities, I feel that it is necessary to emphatically state: There is absolutely no shame any possible exposure source to our family should feel. None. Zero. Zilch. Nada. There will be no blame from me nor any other member of our immediate family, and absolutely no condemnation.

COVID is everywhere in our community right now. Everywhere. For two years our family has avoided getting sick with this, but anybody who is attempting to have any sort of normal life is going to have a hard time avoiding this. Anybody. We are two years into this, three members of our family are vaccinated, both adults are boosted, and I am not going to deny Hannah the opportunity to live her life in an emotionally healthy way. She had and has my blessing for what she is doing. She masks up for most everything, and so do we. I have yet to see a credible expert on COVID state that we are ever getting rid of this virus, so I fail to see any advantage in hyper-restricting contacts with others at this point. Even for Tony who as yet cannot be vaccinated, emotionally his quality of life would be terrible if we shut down his therapy programs, which is why from day one my approach was mask up, practice what infection control we could, and keep everything running the best we could under the circumstances.

I had spent a half an hour unmasked in close contact with Hannah every night before we knew about the exposure, so I was the next person to feel the touch of symptoms, but I will say I felt it only lightly. Some days of being tired and having swollen lymph nodes was really the worst of it for me. I’m already back to doing light workouts. I literally got no other symptoms, and I credit being recently boostered up for that. I even felt well enough to wear makeup every single day the past week and a half we’ve been dealing with all of this, though I have held off on created my Instagram account as our family works through this.

  • Today

Hannah was completely recovered within three days (she’s young and vaccinated). Andy began developing symptoms a day after I started feeling like my body was fighting off something, but his symptoms were more pronounced than anyone’s in the family, though still mild for COVID. He got the PCR test because the at home test came back negative, and given our exposure source, we doubted the results. And unfortunately, probably his symptoms will persist longer because he is still being required to work given his lack of fever and the number of days since his symptoms developed. The severity of this wave as regards to staffing in healthcare has caused many local organizations to require this of their healthcare providers. He also received his booster a couple weeks before I did.

Thus far we’ve been able to keep Tony from getting this by having everyone wearing KF94s as much as possible during the period of time where contagiousness was suspected, keeping the air purifiers on, and ventilating the house with open windows. A kindly, but doubtless long suffering, customer service rep from the place I order my KF94’s from who called a couple of days ago got to hear exactly how healthy Tony is feeling. He was squealing, jumping, and running up the stairs, delighted to have me distracted on the phone while attempting to give him his evening meds.

Tony’s kindle in a bag of rice…doubtful that will be enough, but it’s worth a try 😀

I have been awash with gratitude for how little I personally have been affected. I am super thankful to have been both vaccinated and boosted. I was able to care for Hannah, I have been able to continue all necessary areas of Tony’s care also, though I did fail to notice that he drug his kindle into the bathtub one of those days. Andy jokingly blamed it on COVID brain, but it became a good opportunity for our son to learn some cause and effect when it comes to his electronics and large amounts of water. Not that I wasn’t tempted to feel frustrated with myself, but I believe in giving myself some grace under these types of circumstances.

And I have had the gift of seeing how much our son’s ability to handle extensive changes to his schedule and routines has improved. We haven’t seen any meltdowns…not even with the absence of the kindle. He’s not regressed in using the potty (and he briefly did at the beginning of the pandemic two years ago because he was severely traumatized by all of his therapists being pulled out of home literally in one day). And he’s continuing to show me during this quarantine exactly how much more he pays attention to things that other people are doing, and it is a great deal more than most people realize.

We’ve never taught him how to use a key. This is a skill that seems counterproductive right now to me for a kiddo with heavily impaired risk assessment. We have a lock on one of our food closets, and I asked him to wait for something he asked for yesterday. He grabbed the key off the box I keep it on, stuck it in the knob, and the only thing that kept him from opening the door was he wasn’t turning the key the right direction. He took it out and reinserted it several times in his efforts to obtain the desired item. And I thought, what a gift to see yet another piece of evidence for why I have made the choices and sacrifices I have to support his therapy programs and growth.

For today, I’m still kicking back mostly, doing things like watching Beauty And The Frizz breakdown the latest Notoriously Morbid release (surely given my makeup aesthetic nobody can be surprised I shop that brand from time to time) and reading Thich Nhat Hanh. Continuing to try out a Qigong bedtime routine each night that was recommended to me by my sister. We text everyday, and that is the best medicine my heart could ask for at this time. But soon we’ll be returning to our therapy schedule. And I want to make sure each of you who have worked with our family throughout this pandemic know how incredibly grateful I am for each of you and the contributions you have made to our son’s growth.