A Profile on Tula

 Four-year-olds have the biggest personalities.

Maybe it is because they are starting to come into their own a bit--they are aware more, more confident in their surroundings and in who they are as a person. They are gaining some independence, doing things on their own. Whatever the cause, age four is such a fun time to witness. Tula is a prime example of this. 

Tula has so much personality, she can’t stop at just one. She has different personas that she adopts to suit her mood, depending on the situation. When Mom or Dad has told Tula “no” (a less rare occurrence than one might assume), Tula will flee the room and “Talking Baby” will return. Talking Baby is a very stern character who verbalizes very well Tula’s feelings on not getting her way. She will say “I am Talking Baby. Tula didn’t like it when you told her no. It made her angry.” 

It is difficult not to laugh when Talking Baby is lecturing you. 

Yesterday, we put out a bounty for Gabriel’s missing tablet, the reward being a soda with lunch. Tula found it, and after a quite triumphant round of high-fives insisted her name reflect her success. 

Me: Thank you for finding the tablet, Tula! 

Tula: You mean…Super Tula?

Her superhero persona is called Stripes, who has no discernible superpowers but speaks in a deeper voice. She told me that Stripes is a hunter that provides for her family by hunting wolves and cows. 

Where she gets this imagination is not hard to guess--we read at least four different books a day every day together. She picks one and I pick one before nap and bedtime. She will usually pick “one we already read” (her words) while I pick a new one. Her favorites are about dogs (like “Hallo-weiner” and “Dog Breath” by Dav Pilkey), the Elephant and Piggie books by Mo Willems, and Little Critter by Mercer Meyer, but she reads a big variety. Anytime you ask her if she wants to read a book, she grabs a whole stack and sets up camp, waiting to see how many you’ll be willing to read because she won’t get tired of it. There are some words she reads on her own, the shorter ones like “no” and “go”, and she recognizes all the letters, knows the letter sounds. She can spell her own name, and Mom and Dad, but cannot write yet.

It is a miracle that she actually even knows her name, because she rarely ever hears it. When I was pregnant with her, I expected we would call her Tula or TJ. As nicknames go, you don’t always have that much control--more often than not, she is called Toots, a moniker I am sure she does not want following her into grade school. But she is just as likely to be called Tu or Tutu or Tula Rue or T-Rex, Toodles, T-Bone, Teeter-Totter, or any other T word that occurs to me at the given moment. When she was a baby, she had the curliest little blonde hair so I called her Noodle, a nickname that stuck when she got taller but not any wider. This basis of confusion led to this conversation over Christmas.

Tula: My name is spelled T-U-L-A. 

Pawpaw: Yeah! What is your last name?

Tua, thinking: ….Oodles of Noodles! 

(As a note, none of my children have escaped the nickname thing, which is why I call Emerald “Strawbebby”, Benjamin “Banjo”, and Gabriel “Google Docs”.) 

Tula has a complicated relationship with food, but what four year old isn’t a picky eater? Her favorite meal, the one she asks for every single time we need to eat, is “chips and sandwich!” She will eat avocado every chance you give her, and likes sour cream but not ketchup. 

If you want to know all her favorite foods, take her to the zoo--she has named all the animals after her favorites, from Popcorn the albino Burmese python and Lunchable the Hognose something or other. Her very most favorite animal at the zoo though is the porcupine she renamed Burger. (The two she saw at the Little Rock Zoo she declared were Chicken and French Fries.)

When you give her food she really likes, you can tell because she has this happy little food dance she unconsciously does while eating. This is something she has inherited from her very favorite person, Aunt Amber, who Tula reminds me of for one reason or another nearly every day. 

Tula is so sweet and so funny. She’s so frustrating because she screams when she doesn’t get her way and it is the most piercing sound. She is a grade five clinger, and would be happiest if I just velcroed her to my body and walked around like that all day long. Her happiest places are swimming or in bubbly baths, jumping in puddles after it rains, and the fantasy destination of going to the beach someday. A water bottle goes with her everywhere she goes. She is a bright spot in the world, this joyous, disastrous, wondrous little girl. 

Four years ago today, we almost lost her. 

Today, diabetes doesn’t bother her. She has literally never known a time when she didn’t get finger pokes and shots. Her sister having to go through it too has made it a bit easier, too. There are some physical signs that she struggles with it. For example, her toes where she gets her blood glucose checked are a little scruffy, and she’s got some knots in her arms where she has had too many insulin injections. Even though she has gotten taller, she hasn’t really gained weight since she was about two so she’s just long and skinny. 

It is kind of interesting, I get asked a lot how I knew that Tula had diabetes. Frankly, we didn’t know until she was already in DKA. But I always tell them: the weight loss. You can get up in your head and start fretting about how much water they are drinking or how much they are urinating, but without significant weight loss I usually don’t jump to diabetes. (I never mind people asking; I like being able to help. The other two things I say are watch for signs of dehydration even if they’re drinking that much, and if you are still worried, glucometers are cheap over-the-counter at all major pharmacies; buy one and check.) But that is why we don’t worry too much about Tula not really gaining weight; it kinda goes with the condition. 

Tula can’t remember that time, thank goodness. But I have come to dread this time of year because those beautiful, awful pictures of her…it takes me back, makes me relive it. At the time, I was calmed and focused. You do what you gotta do to take care of the kid. After the shock had worn off, after the dust had settled, that’s when I started to fall apart. I had intense panic attacks and had to seek treatment for PTSD. Little things would set me off--a certain shade of purple, an accumulation of ice, the smell of Pantene shampoo. 

It was one of the worst days of my life.

Which feels hideous and self-centered of me to say. I mean, it wasn’t happening to me. It wasn’t about me--it never was. It was about this brave, beautiful, perfect little girl that loves to read books and dances when she eats guacamole and could sit by Burger the Porcupine’s enclosure all day. I am so very blessed and thankful to know Tula, little less to be her mom because she is amazing. 

That’s why I wanted to write today. I saw a video of Tula in my memories on Facebook, her eyes puffy from crying, her face so pale even with her chapped cheeks, idly scratching at the IV cast she had on her arm. We had gotten one of the two IVs removed, so she was a bit more mobile, and I could give her a bath. They had given me tubes of Eucerin to rub on her dry cheeks, and she was wearing a black Cooks Childrens t-shirt and a diaper. The video captured her first smile in days. Emerald had decorated her crib with streamers for New Year’s Eve. 

With that smile blossomed hope. That our she was going to be okay, which meant we might be, too. 

Happy New Years, everyone. May your day be filled with joy and laughter and all your very most favorite things. 

Love, 

The Weardens

Overdue Update

 I haven’t written in a while. 

Over the past year and however long, since we have retreated back into our cave waiting for something to change and it be a bit safer to venture back out, my words have left me. Even my head is a quieter place as I have grown increasingly desocialized, like a semi-feral housecat returned to the wild. Don’t get me wrong, it has been kind of nice. My brain feels less full and I talk less in general, because I genuinely have less to say. (Now when I am around my sister all bets are off.) But otherwise, having normal chats with people feels like a skill I have let atrophy and I fumble through it inexpertly. With fewer things to say, I tend to write less as an outlet. Thus, fewer blog posts.

It has been too long, however, and I assume people are wanting updates on how all of us are doing and what we have been up to. 

Michael left his job with Abilene Christian as an audiovisual tech last November when he accepted a job with Honeywell in cybersecurity. He took the job with the understanding that he would be working remotely during the pandemic and that we would need to relocate to Arizona by the following summer. This job was a great career move for Michael, but we were hesitant to uproot--while we had friends that would cushion the landing in Arizona that we were very much looking forward to being near, the practicalities of transferring all of the kids’ needs were daunting. We would have to find new specialists, therapists, and programs that could accommodate them. We would be leaving behind family, friends, and our church community. Since 2014, we had been working toward putting down roots here and ripping them out was proving tricky. 

In April, Michael and I flew out there for a long weekend to look at houses. The reality of the housing situation further told us now was not the right time to move. Houses were selling so quickly that there was little hope for us to get one, little less the “right” one for our family. At the airport, the guy at the car rental place asked us what brought us to Phoenix. We told him, and he said “good luck--I have been trying to buy a house for over a year”. As first time home buyers with no experience, barely enough credit, and not a substantial down payment, we were a longshot at best. 

Michael expressed these concerns to his superior, who urged him to put in for an exemption and continue to work remotely but stop looking to move until we heard back. A few weeks ago, we got notice that our exemption was granted--he could keep working from home and they would fly him out for important meetings and things. This was such a blessing, and we were quite relieved to have the pressure to move taken off. 

As for how Michael’s job is going, he just went through his mid-year review with his supervisor, who had a very positive and glowing report to give him. He loves his job and the people he works with, and we are happy for him. 

Emerald and Benjamin are still doing school remotely. I have sent in their application to do K-12, but there are so many people enrolling that the admission process has been slowed down significantly. Until then, I am continuing to homeschool them. This was a discussion we sat down and had as a family. Emerald wanted to keep doing school at home; Benjamin wanted to go back. We discussed how Emerald and Gabriel (and Michael and I) are all vaccinated, but Benjamin and Tula would not be until later. No one wanted to risk bringing Covid home to Tula, specifically. As we figure, she is most at risk being both diabetic and unvaccinated. 

Gabriel is going to school however. He is in his self-contained classroom and sees very little of the general population. His teacher is someone we trust to keep his classroom safe and healthy. He is most in need of the routine and supports. I have still been worried about it, but so far it has been good. Gabriel loves being back at school and gets nearly perfect reports every day. He is interested and engaged with the materials they have in his classroom, he attends to tasks long enough to surprise even staff that know him, and he more or less behaves himself. The other day, we got a note that said he sat and attended speech therapy for nearly the entire half hour, using his talker to tell the SLP what color the animal was unassisted. All of this reinforces that going back in person was the right choice for him. 

As for the other three and I, we still try and do fun things safely during the day when we can. We went to the state park yesterday. With the family zoo pass, we get to go there as often as we want. Tula likes to walk around naming all the animals. Her favorites are the big yellow snake she named “popcorn” and the porcupine she alternates between naming “fries” and “burger”. I will write a suggestion to the zoo that they get one more porcupine so that she doesn’t have to choose. Emerald and Benjamin work on learning the Spanish names of the animals and how to sign it, but mostly we wander around talking and enjoying being out. Abilene is very family friendly--we have tons of parks we can go to, frisbee golfing, the library, splash pads, or the Grace museum (which we also have a membership to). So we stay busy. 

As for extracurriculars, Ben is doing Cub Scouts; he is a Webalo. Mom takes him and tries to keep him as safe and social distanced as possible. He has gotten to go camping and tubing down the river and in general just enjoying the experience. Both he and Emerald are interested in joining 4H as well--Ben in gun safety and raising rabbits; Emerald in Legos/robotics and cooking. They got to hear about it at the expo, but we will hear more after the first meeting. 

Benjamin is reading “Treasure Island” right now as part of his school work. He likes to read it aloud to the cats, who seem appreciative. On Emerald’s reading list is “My Antonia” by Willa Cather, one of my favorite books. I actually rescued it from the dumpster when we lived over by ACU and all the college students; it became one of my favorite books. Tula...on a typical day, we read at least four books--two before nap and two before bed. She is partial to Little Critter books by Mercer Meyer, anything by Dav Pilkney, and of course, Pete the Cat. The rule is, she picks one book and then I pick one so that we don’t read the same thing over and over again exclusively. My favorite store in town is called “Book Therapy”; it is a used book store that Amber and I like to wander around. They have inexpensive picture books that I bring home to share with Tula. It has been nice.

As for me, I guess the biggest reason I have been so quiet is because I went back to school. 

Amber decided she was going to start taking online courses last year to get her bachelors in some IT field. She did some research and decided on Western Governors University, an online program based out of Utah. There were a lot of benefits, such as being able to test out of courses and work at your own pace to complete your degree as quickly as you wanted to. The price point was reasonable, a flat fee for a six-month semester with unlimited courses per semester. 

So I got curious and decided to check it out for myself.

I saw that they had a program for initial licensure for teachers, and I thought...I could do that. If nothing else, I am gaining knowledge and experience to better homeschool these kids, and getting some college credits in the meantime. I picked Bachelors of Arts, Special Education and Elementary Education dual licensure (BASPEE) because I figured if I was going to teach anything, special education has always been my field. There is a lot of need for it, and there are always jobs available. So why not try. 

The Pell Grant nearly covered everything, but I didn’t want to go into more student loan debt if I could avoid it, so I applied for every scholarship that was available to me. I was granted a teaching scholarship that not only covered the remainder of the balance, it was also enough to offset the out-of-pocket costs of things like certification tests (core skills, content exams, etc). It kind of reinforced the idea that going back to school was the right choice for me, because now I was getting to do it for free. 

I work pretty hard at it. As a general rule, I am a good student and make good grades. I enjoy learning. My semester started on May 1 of this year; so far I have completed 12 courses and am working on my 13, as well as passing my basic skills tests (I got a perfect score on my reading and nearly perfect on my writing). 

Maybe the teaching thing won’t work out. There are a lot of considerations, I know. Burnout among teachers is high, and there is great cause for it. Maybe I won’t even be any good. I am in the process of becoming a substitute teacher for AISD, though. It should give me a better idea of what it would be like to be in a classroom, and how I might manage. But I am glad I am trying. My next step I think would be to get my master’s to be a visual impairment specialist, because that would be something I would encounter frequently as a special education professional. One step at a time, though. At the rate that I am going, I should be ready to do student teaching in about a year. I’ll let you know how it is going. 

Outside of that, everyone is healthy. We have had remarkably few unscheduled doctor’s visits over the past year (the scheduled ones are still as frequent as ever). Gabriel is on a medicine dose that seems to be more or less working for him, and he is making communicative progress with his LAMP for Life device. The last time we got the girls’ A1C’s done at the beginning of August, they had showed marked improvement--8.3 (Emerald) and 8.4 (Tula). Just a little more push and we will be in that 7 range that we have been working so hard for. Sometimes it seems like Tula is mellowing out and getting less sensitive to blood sugar changes; other days, it feels as unpredictable and volatile as ever. 

But that is basically the all of it. I could tell you about the cats, but they are pretty much the same as they have ever been. I could tell you about the dog, but she is an old woman and is also the same as she’s ever been. Everyone is still muddling through to the next day the best we can. 

We hope all of you are doing well--we love and miss you all. Feel free to reach out to us any time. I may not be so good at the talking anymore, but I would love to listen to what has been going on with you. 

--Andie

The Right Decision. Or maybe not, we'll find out.

It was just over six years ago that we made the decision to uproot our family and relocate to Abilene, Texas in pursuit of a better life for all of us. 

There have been plenty of ups and downs in that time, but we've always regarded it as the 'right' decision.  We found a place here, a home. We made friends, found a Church home that we love, even found a rental house eventually that was just a perfect fit for our little niche.  Tula was born here.  Nine months later we nearly lost her here.  We've had birthdays and funerals, broken bones and broken hearts.  We've met some of the kindest people we've ever had the pleasure to know, and said goodbye to ones we wish were still around.

And now, its time for a new decision. And I pray to God above that its the right one.

I've been offered a new position, doing network security for Honeywell.  It represents a large pay increase and as anyone close to us can tell you, that is very badly needed right now. 

It's also in Phoenix, Arizona.  Turns out there is one after all.

We have until next summer to relocate, but I’ll begin working remotely in just over a week.  The company is paying for the relocation in full, including packers, movers, vehicles, etc. So thats one less thing to worry about.  But this does mean that once again I’ll be uprooting our family and venturing into unknown territory where we have very few friends or family as contacts. 

I wasn't sad when we left Lubbock.  It was an adventure.  A new opportunity. I’ll be sad when we leave Abilene. It did not take long for this to start feeling like Home.  A large part of that has been our Church Home, University Church of Christ, who have been the most perfect church home to us that we ever could have asked for and we are heartbroken to be leaving.  I'm hoping to have a chat with some of our friends in the Church and see if they have any contacts or church family recommendations in the Phoenix/Tempe area. 

And of course, we are leaving behind many friends and family here, so don't expect that you Abilene locals have seen the last of us. 

I'm not sure what more to say about it really.  We are all frightened.  We aren't totally sure what we are getting ourselves into.  But we've discussed it at length and we are hoping and praying that this is the right decision for the family.  Ultimately my only motivator is providing for this unique little family, and right now a larger salary is the only thing that can do that.

We love you guys.  We love it here, and there will be no shortage of tears.  But we have some time to ease that transition.  

Please feel free to reach out to me or Andie if you have any questions. Or just say hi.  Its a scary time in this country and we all need a little support from our friends now and again.

Also, there are some big scorpions in Arizona so its entirely possible I'll chicken out.

~Michael

Guest Writer: Michael - ABLE

I've been struggling with the best way to approach this, and I've come to the solution that honesty and simplicity is probably the best approach.

Its no secret that taking care of these kids and their needs takes a financial toll.  And we are fortunate and blessed enough to have family and friends that occasionally (or some more regularly) help us with that toll.

Gabe receives a small SSI payment every month to help cover costs. If our assets reach a certain level, he loses that.  Its never been a concern, really as every dollar we earn goes right back into providing and taking care of the family.

However it brings us to a position where we qualify for an ABLE account for Gabriel. Any funds that go into this account do not count against his benefits.  What's more, it is an account that can accept donations online.  It is also the only way we can save for future emergencies or for Gabe's future at all without risking risking SSI or insurance.

I've found myself in the position over the years where I was too proud to accept outside assistance. I've grown past this and simply become grateful for my loving friends and family who wish to help out.

I am not asking anyone to make a donation, I simply want to put this information out into the world. If you want to chip in to help with bills or groceries or rent, or to help secure the future for Gabe, this is a very easy and convenient way to do so.

Many of you have been following our family for years. We appreciate each and every one of you.

~Michael

https://www.able-now.com/give-a-gift/

Account Number:

701012017928

Owner's Last Name:

Wearden

Onlies

I am so tired. 

Who isn’t? 

Who isn’t tired of the current state of things? It is exhausting. Anyone that is making it through unscathed is...I don’t know. Lying to themselves perhaps. We are tired of the ugliness, the hatefulness, the divisiveness. I am so damn sick of COVID. If I never hear of it again, it would still be too soon. 

But we will. While the disease itself is going to go away one way or another, its legacy is one that will endure--we have ensured that. Too much has happened. 

I could sit here and debate national and global response, the merits of protective guidelines and facial coverings or whether that encroaches on personal freedoms, should we do more or have we gone too far in response to this virus...but that would violate my personal beliefs. The ones that say: if you are not an expert in the matter then the only thing you have to offer to the conversation are opinions and therefore utterly worthless. 

In an unprecedented time of available platforms for expressing one’s viewpoint, there are so many that feel entitled to share their two cents on every. Single. Topic. All this serves is to drown out anyone who has something worthwhile to hear, muddies the water until it feels as though there is conflict or uncertainty where none exist. A google search confined to first page results (don’t kid yourself--nobody goes to the second page) and ten minutes of perusing blurbs does not a specialist make. 

And yet. 

I can speak precisely to my experiences and my perceptions, so it is what I will do. This is for entertainment purposes only--there is certainly no expertise I could claim. 

As I sit in my bunker for what feels like the tenth year of exile, I keep seeing and hearing the same dismissive things:

“It really only kills those that have health problems anyways.”

Only. 

As a mother of two onlies, the daughter of a former only (may he rest in peace), as a person that has taught and held and befriended and loved those onlies, may I say: 

Please don’t. 

While it is true that this virus is, like most things in life, more difficult for those with chronic health conditions, the idea that it makes it...what? Okay? Less worthy of consideration? Oh, I know:

It makes it not worth the price to pay for your inconvenience. 

There are times in this that I am going to sound angry. That is because I am. All the time. I am so angry about so many things and for so many reasons. I could try and stuff that in a sugar-and-lace tone more palatable for all audiences so hackles remain safely down, but...why? Anger is an appropriate response to hurt, and it is something we have to work through like any emotion.  

I do not and never have asked for anyone’s help in keeping my daughters safe. It is my burden, Michael’s burden, to keep them healthy and alive because frankly at this point we know more than anyone on the topic. What can I say, I have a vested interest. As such, I have made the choices during this nightmare of a reality to the best of my ability, with full and intimate knowledge of what the consequences would be for us as a family, as individuals. 

If you are looking up stats and seeing the news articles, you would have surely noticed that a particularly at-risk population is those with diabetes. Not an insubstantial portion of the population. There is not a lot of research on whether it is exclusively those with Type-2 diabetes because there is a high rate of comorbidity with other mitigating factors, but I can tell you with certainty: contracting coronavirus will not be “the sniffles” or “just like the flu” for my girls. 

My onlies.

Every one of Gabriel’s classrooms since he started in the preschool program for children with disabilities at the age of three has been populated with medically fragile peers. While he himself would likely (we pray) recover if he got sick, he would unwittingly expose a classmate that would not fare as well as he. Children I have met and worked with through my time at Sugar'n'Spice, Woodson Early Childhood, and REACH were populated with some of the most beautiful, funny, vivacious, wonderful onlies you could imagine, and for every second I had them I loved them as I would my own. 

Maybe it’s a perspective issue—people don’t realize that there are so many stuffed into this box of “onlies”. In this country alone there are millions, millions of those with chronic health conditions that have been acutely aware of the precariousness of their situation and are going to considerable lengths to ensure their safety. Most are doing the best they can under the circumstances because some garbage about the economy and we gotta work to live. But they are there with their loved ones, living in more fear and doing the best they can despite the fact that all around them it is being made abundantly clear: 

They have been voluntold that they are the acceptable cannon fodder for this new threat because others can’t be bothered. 

For the most part, I shoot a bitchy look and let it roll right off of me because I got more important things to worry about, but I gotta be honest: when my rare shopping trip is sullied by a grown adult screaming and throwing a tantrum at the grocery store entrance because someone who is definitely NOT making enough to put up with your crap was told they had to enforce corporate orders for facial covering and you think that somehow infringes on your “rights”....I want to leap over there and strangle you with my freshly sanitized hands from a safe six-feet away.

That might seem harsh. Some of you may even be getting your hackles raised, arguing “Well, you don’t know, Andie. They might have a reason that they don’t want to wear a mask. Maybe they have asthma. Can’t breathe while wearing it. Maybe they have trauma that prevents it, or or hey! What if they have sensory issues? Huh? AUTISM, perhaps?!” 

In which I reply: you honestly don’t buy that, do you?

Masks are made for people to breathe through—that’s why surgeons (and surgical staff!) aren’t single use items. And a respiratory condition would only be further exacerbated by having a respiratory illness, I would imagine. But if one were truly invested, they would be able to find a mask that worked with their condition. Or heck, they could (as much as possible) limit their time in the mask and with people because they are aware of their own inability in this realm. 

As for sensory issues, autism? Honey, you can get straight outta my face with that one. You are preaching to the wrong person. Since his birth, I have had to deal with Gabriel’s sensory seeking/sensory defensive cycles, which have been disheartening and extreme. He has gotten completely buck-nakkie in the buggy at Walmart on more than one occasion whilst I had my back turned. But here’s the rub guys: we don’t let sensory issues dictate behavior. I don’t smile warmly at other grocery store patrons that are staring aghast at my son’s exposed everything and brightly explain, “oh, it’s okay—he has AUTISM!” When there is an issue with expected or appropriate behavior, we give them the tools to cope. 

For Gabe’s nudity in the store, I started with having him focus on me. I felt like a great big ol' fool but I would belt out songs at the top of my lungs because for him, it was like I was casting a magic protective spell over him. And it worked! Sure, there were people that shot me weird looks (and more than one that would join in or offer song suggestions) , but I wasn’t doing it for them. I was doing it because I knew long-term Gabe needed the tools to get through this. 

Fast forward to today, where he would rather wear a mask into the store than pants, if given the choice. But I still make him wear both. And if it came down to a “pick your battle” sort of scenario (because BEEN THERE)? I don’t take him out. 

Guys, I can’t begin to tell you how much this doo-doo storm has negatively impacted my life. Starting with the fact that I have been more or less trapped in this house with these kids since friggin' March.

Tula is missing out on critical exploration time, as well as her time with Mommy’s undivided attention. Small potatoes; she’ll be fine, but it still sucks. She is loud, screaming for attention in a house where her voice is just one of many. Emotionally it has been difficult for her. 

Emerald is scared out of her mind of getting coronavirus, to the point that she is afraid to leave the house or be around other people. Because she knows. She asked me why people weren’t taking this more seriously. I told her that a lot of people lack the imagination to know what it is like to be really, really sick or in the hospital if it hasn’t happened to them. Her perfect little face blanched so hard I thought she might pass out and she whispered, “it’s not fun”. 

Benjamin, my sweet almost-normal, healthy child is suffering, too. He is simultaneously incredibly social and very bad at human interactions. He is getting the one-two punch of isolation with a big sister that finds him annoying and a little sister he finds annoying (Gabriel is just a source of constant aggravation to him) but no friends to play with, which deprives him of the benefits of socialization. He is showing signs of stress, but he doesn’t want to go back to school because he is afraid he might accidentally make one of his siblings ill. 

For the last few months, he has been losing weight, complaining of stomach pain that leads to vomiting and eating less, and looking weak and wane. He had to start omeprazole and have a sonogram, fecal smear, and lab work done that revealed he has IBS brought on by stress. He lives in constant fear that he or his family members are going to get sick and die, and he is trying to mentally prepare himself.

And Gabriel? Oh, my Gabriel. The amount of regression—loss of progress and skill—that we have experienced in my boy is...more than I can face at the moment, to be honest. Since he was 17 months old, we have applied firm and steady pressure to help him gain skills. He’s been enrolled in multiple therapies weekly since that age, had a case manager to help direct his services, met with specialists regularly (no less than every three months), and aggressive behavioral treatment plans. Since he was three, he has been in school year-round with teams of special education specialists, building toward as much independence and self-reliance as can feasibly be attained. We have dealt with every problem behavior that has arose from fecal smearing to aggression to extreme prolonged sleeplessness to dumping (upending organizational units that hold multiple items like bookshelves, toy buckets, or jars full of pickles from the fridge so that it scatters on the floor) and triumphed over them while pushing for him to gain new skills: eating with a spoon (attained at age 7), dressing himself (pulls on clothes with stretchy waists and no fasteners, age 10), sitting and attending tasks (ongoing process, but we were up to 15 minutes regularly). He was cultivating friendships and interests and social skills, secure in a predictable routine. 

With that constant force, the indomitable will I am infamous for, we were able to achieve around three months of developmental progress per year. 

Over the last six months of this, the worst of all time lines, I have had a front row seat to the majority of that progress evaporating into thin air.

He started out after spring break begging to go back to school. He would get dressed, force his feet into whatever single shoe he located (whether it belonged to him or not), and put on his backpack to wait at the door for the bus. Heartbroken, Michael and I would try and get him distracted, get him engaged in something else. But he would just sit beside the door watching for the bus, fat tears rolling down his face.

That army we had amassed to fight for him slowly trickled away. Insurance, at least in this state, looks for any reason to deny coverage of therapies. It demanded that the sweet occupational therapist do one hour of therapy per session instead of the former half-hour, because children (especially those with autism!) are known for their long attention spans. This happened about a year or so ago, so when stuff went all sideways in this catastrophe clown car of a year, the OT was now expected to get Gabriel to attend to therapy for a full hour. Over Zoom. After a few months of struggling with this, we had to do a re-evaluation without the specialist there to administer the test—I was given a questionnaire to fill out, which was the best we could manage given the situation. They were unable to prove through the re-eval that there was progress made, and we were denied coverage. Same deal with Speech. These people we had been seeing in our homes for years that were just as crushed as us had to sign Gabe off their caseloads, with the hope that when things got back to normal we would resume services. 

We expected regression. It is inevitable, with all kids but more so with children on the spectrum. But I wasn’t prepared, emotionally or otherwise, to handle a Benjamin Button scenario play out before my eyes. 

I won’t fully recap it here because I am already in tears, but some of the highlights were: human poop intentionally decorating my walls and furniture, painted afresh every day. Aggression so unexpected and out of control that I had to wear long sleeves and pants in Texas summer because I was covered in cuts and bruises, but putting myself between them was the only thing I could do to keep him from hurting his siblings and deal with his outbursts. Literal weeks of less than two hours of sleep a night...again. Weeks worth of food dumped out on couches, carpets, blankets, floors. Butt-ass naked boy body in our vision every time we turn around. 

Despite our desperate attempts, Michael and I have sat witness to literal years worth of progress erased. Don’t get me wrong: we have faced down each of these problem behaviors and we triumphed over them once again because we are legitimate Bosses. Each time one of those special ops from his team spoke, we were right there taking notes so we would know for the future. Every single issue that arises, we will smack down like the many hands of Durga, slap slap slap slap slap. 

But it will take us actual factual years to get us back to where we started. Not to make new progress, but to re-emerge close to the state he was in at the beginning of this year. And perfect timing, too, since Gabe is creeping steadily toward puberty, a notoriously easy time for everyone involved. And it friggin sucks.

This. This is what I have sacrificed to keep my children and those around us safe. I made the right choice, hard as it was, and I would make it again. Because when we are living in the worst of times, the only thing we have is our humanity—not willfully endangering the lives of those around us feels pretty baseline. 

So shut up about the mask, would you? 

—Andie