About solinox

I am a Wiccan priestess, a libertarian mother of triplets plus three, a wife and homeschooling mom to blind and autistic children, a fiber artist, and a Jane of All Trades, always learning and seeking to help.

Why

I was asked today what my purpose was in attending seminary, and how long I would be in school there. At first I didn’t really have an answer. I know that I sort of joined on a whim at first, following a friend because it sounded like fun.  I really had to think about it today, and the question lodged in the back of my mind until I got it sorted.

I think it’s an important question, considering how much of my time is being spent on this effort.  As of today, I am spending 5 hours a week just in class, each class with it’s own list of readings and assignments, plus another hour in volunteer meetings for the organization that produce their own workload.  I’m working along an initiatory track as well, which means additional meetings and assignments from my teacher.  To give proper attention to all of it would probably mean 5 hours of study or class every day, an unattainable goal on top of everything else already on my plate, and with a body that likes to knock me down whenever I try to do too much.

If I had to boil my purpose down to a single statement right now, my goal is to become the best priestess I can be.  All of the other things are linked to that one purpose: attaining Third Degree, acquiring a bachelor’s or even master’s degree, acquiring the skills and experience needed to start a church when we move back to Texas.  It all goes back to learning as much as I can to practice the Craft to the best of my ability.

Mastery of the Craft is something that I have wanted ever since my teens, but I have always found it difficult to pursue, feeling trapped as a solitary for decades with very little contact with others who shared my path.  When I finally connected with a church, I joined and participated 100%.  When I was offered an initiatory path in that tradition, I only waited about 30 seconds (ok, maybe a day or two) before accepting.  As soon as I found out about the seminary and determined that it was something I could do, that it fell within my budget and location requirements, I signed up, right in the middle of their academic year and ready to jump into the deep end head first.  It’s a good thing that I no longer have any nurslings or diapers to tend, that the work to get A’Kos is over with, and that most of my kids are able to pull their own weight around the house!

So far every step I’ve taken has indeed led me farther down the path that I feel is integral to my life’s work this incarnation.  With every move, I have stretched my personal boundaries and abilities, and I have increased my knowledge and confidence.  Looking back, I can see each part flowing logically into the next.  The road has had bends and hills and the occasional crevasse, but it has been a single road.

Right now, it is very busy.  But I can feel the energy of the work I am doing, I can feel the pace and rhythm of the learning and the connection with my fellow students, the way all my classes mesh together.  Sure, it’s possible that I could back off and just do one class at a time, one thing at a time.  Spend an hour a day instead of three or five.  But right now, I think I would lose a vital piece of what I am learning and experiencing.  So I’ll keep on keeping on, and just remember to make sure I pay enough attention to my family while I do.

EDS Hypermobility Type

I posted once about hypermobility syndrome after I first met with my current rheumatologist back in 2013, but I never followed up on it.  Now I’ve been living with the diagnosis and integrating it into my view of myself for almost three years, and because a couple of my friends have the same condition I feel like everybody knows what this is and what it does.  Tonight I was reminded that this is not the case, that as much as it feels like normal and common sense to me and my kids because we live with it, others still need to have it explained.  So here’s a fresh explanation, with some new insights.

I’ll say up front that my official diagnosis from the rheumatologist is systemic Joint Hypermobility Syndrome (JHS) with spinal bifida occulta and arthritis in my spine, hips, knees, and feet.  Her policy is not to use an Ehlers-Danlos Syndrome (EDS) diagnostic code unless she has a positive genetic test, which she generally doesn’t order because it’s expensive and doesn’t serve much purpose unless you have a dangerous subtype, and may just be a false negative if you have a mutation that has not yet been identified.  However, the clinical differences between JHS and EDS type 3 are minimal, and many doctors in the field believe there is no real difference.

My children do not have an “official” diagnosis at all.  My own rheumatologist cannot see my children because they are children, for liability reasons.  The nearest place we could go that would be familiar with this syndrome, especially in children, is in Ohio, and it just hasn’t been worth it to make such a huge effort and expense for a piece of paper.  There is no treatment for EDS, no cure, only awareness, the ability to better care for our bodies so they don’t wear out so fast, something to tell doctors and nurses before the anesthesia fails and the veins blow out and the belly incisions bust open.  After identifying so many of the same symptoms in my children, and especially after seeing them struggle with dislocated/subluxated joints and finding out at least one of them also has spina bifida occulta, I am feeling more strongly than before that seeking out at least the genetic testing might be worthwhile, both for genetic counseling for my children and giving them a better ability to anticipate how their bodies will react to things in the future.

All that being said, part of the point of this post was to provide an explanation for how EDS affects our bodies.  It is not limited to the joints, and it is not limited to extreme crazy contortionist tricks.  Here is a list of ways in which EDS affects my body (not necessary exhaustive, because there are so many that sometimes I forget some), and most of these symptoms I have now seen also in one or more of my children:

  • spina bifida occulta
  • frequent joint sprains and unexplained sore joints
  • random or easily produced joint dislocations and subluxations, including toes, feet, ankles, hips, shoulders, and jaws (I can dislocate my toes by getting out of the van wrong, my ankles by stretching, my shoulder by picking up a heavy bag, my jaw by yawning)
  • anesthesia that is ineffective or resolves (wears off) too quickly, because it leaks away from where it was placed
  • I love to eat salty foods, much saltier than most people like them, which is one way my body tries to keep my blood pressure from dropping too low.
  • orthostatic hypotension, or I almost pass out when I stand up because my blood pressure can’t adjust fast enough
  • I can crack my ankles just like I can crack my knuckles
  • a heartbeat that fluctuates with my breathing, with frequent episodes of palpitations and a history of unexplained murmurs
  • stretch marks on top of stretch marks, from just existing, from growing boobs, from growing into a woman, from having kids again and again and again…not one or two, but entire body parts completely covered in them
  • keratosis pilari, that bumpy skin on the back of my arms
  • severe nearsightedness
  • poor wound healing, with dehiscence in incisions when they should already be closed
  • incompetent cervix in pregnancy
  • being able to easily squat, being more comfortable sitting on the floor than in a chair
  • tendon and nerve issues like plantar fasciitis and carpal tunnel syndrome starting in my teens
  • severe recurring idiopathic headaches
  • pelvic organ prolapse
  • creaks and bumps when my joints move starting in my teens
  • poor circulation in my feet
  • Reynaud’s syndrome causing blood loss and pain in my hands and feet in the cold
  • constant back pain and tight muscles around my lower back
  • idiopathic blood issues, including thrombocytopenia (low platelets), petechiae (pinpoint spots of bleeding, especially after pressure on my skin like carrying a heavy bag), borderline anemia, easy bruising, and a tendency to bleed out in surgery
  • flat, pronating feet
  • early-onset of tissue paper skin
  • idiopathic mouth sores
  • reflux and irritable bowel syndrome
  • extreme sensitivity to stomach irritation from nSAIDs like Advil (which is why I make my own)
  • hard-to-place and blown IVs
  • permanent hair dye washes out in weeks
  • symptoms of Mast Cell Activation Disease (MCAD), especially dermatographia and other strange allergy-like reactions
  • stretchy skin with a velvety texture, especially in areas that are under constant stress or friction
  • severe, almost debilitating menorrhagia
  • translucent skin, so you can see all the veins

As you can see, this runs the gamut from weird but no big deal to things that can ruin your life (anesthesia failing during surgery can do that).  Sometimes paying attention to the little things, like that shoulder that keeps popping out during cheer practice, and taking better care can prevent total disability at a relatively young age.  Hopefully my kids can keep it going longer than I did.

Gonna Get My Groove Back

I am getting achy again as winter creeps in, and I am tired of feeling like everything takes forever around here, so I am going back to an old tactic I used as a kid that works much better with today’s tech: the timer!  I’m going to race myself against the timer and see how I do, see just how long things really take if I apply myself.

My current list of daily essentials looks like this:

  • Brush out my hair
  • Shower and dress to shoes
  • Brush my teeth
  • Clean the downstairs bathroom
  • Reboot the laundry
  • Clean the upstairs bathroom
  • Morning kitchen blessing (clear and wipe tables and counters and stove, reboot dishes, reboot recycling)
  • Clean the litterboxes

Today’s essentials took 1:10 to complete.  Exceptions include writing a quick email to somebody before I forgot, emptying the household trash cans (normally a weekly chore), the first time cleaning the upstairs bathroom in quite a while, and stopping the timer before balancing the checkbook (something I want to include in the future).  I think in the future the timed run ought to include the things I do before I eat (making coffee, walking A’Kos, handing out medicine to animals and eyedrops to Kender, feeding the animals, tending my altar) with the timer stopped while I eat.

This went really well.  Competition is good, and anything that gets the chores out of my way faster is a good thing.

Did I earn a knitting break?

One Big Happy Family

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My patriotic facebook profile picture

People die every day. They are shot, stabbed, strangled, or blown to bits. They die from natural disasters and crappy engineering and war. They die from operator error, negligence, and neglect. They die from disease, from old age, from wearing their body out a little faster than others.

I’m not sure what makes a death, or even just violence, newsworthy, not just evening news but internet news. It’s not just violence, because people are murdered every day and don’t get reported on, yet my friend’s murder made international internet news when it happened. Sometimes it’s numbers, but there doesn’t seem to be a hard threshold, with some people categorizing mass murders as anything over 4 while other outlets don’t seem interested unless the death toll is much higher. Sometimes one black person in a wealthy country makes headlines, and sometimes a hundred white people in another country are forgotten. One person dying of cancer is just another funeral, of no interest outside her family and friends, but if 10,001 people died of cancer one year and 10,000 the year before, there will be international headlines bemoaning the epidemic and telling us not to eat red dye number 5, or bacon, or anything that ever touched the wrong kind of plastic.

Wibbly wobbly standards of interest and panic.

But when death does make internet news, my Facebook feed always follows a very predictable pattern, as do I to be honest.

First, somebody vaguebooks about something. They are so sorry for a city, or praying for a family, or maybe they’re just in total shock with nothing to indicate whether it is a 7.2 earthquake in Tokyo or another UM/MSU game. It starts as one post, then gradually picks up steam, allowing me to rule out football depending on the geographical spread. Eventually, somebody will post a news story, or maybe they won’t and I’ll get all impatient and Google it myself. I don’t participate in this phase unless I learn something before seeing it on Facebook, which is pretty rare since I don’t watch or listen to news channels anymore.

Once the news stories start, they snowball quickly. Everybody has their own favorite outlets to share, and every post is topped by comments about prayer, courage, shock, pain, fear, the whose range of emotions. When this happens, I start looking for the exceptions. I want to see what is different, who is being a nutcase, what the radical ideas are. Who is sharing new pieces of information, and what are their sources? I try not to participate in this phase, either. If I am personally connected to the tragedy, I am busy coping and don’t want to risk sharing anything without permission. If I’m not connected, I don’t really trust anything I hear anyway, so I don’t want to spread it, but if I see something unusual and interesting I may boost it.

Somewhere in this area, the solidarity starts. Everybody starts to identify with the victim(s). They start saying they are that person, they are from that city or country, they believe in that cause. This is where Facebook profile pictures start to get changed, and this is also where things start to get ugly. It becomes a gang situation. You’re either with them or against them, and everybody can tell which gang you belong to by the colors you sport. Now you’re not allowed to stand aside. Everybody starts making assumptions based on your profile picture, on whether or not you’ve shared stories, or whether or not you pray.

And now the fighting starts, and my Facebook feed starts to look like the aftermath of Thanksgiving. The profile pic contingent is loudly crying and waving their flags, saying nobody understands. Somebody is telling them it’s their own fault, they could have prevented the whole thing. Two or three people are shouting from the other side of the room about how their feelings were hurt just last week, and why didn’t anybody pay attention to them? Mom and Grandma start praying for everybody and offering up conciliatory pie, while Dad and Uncle Joe discuss the statistics involved and wartime strategies for getting rid of all the culprits, presumed guilty up front of course.

And I’m just going to head into the living room and pull out my knitting, because getting involved in the argument myself isn’t going to do anything to help anybody.

I can’t fix the evil in the world. I can’t even be too sad about all of it, because life would no longer be worth living without joy.  So my task is to bring some beauty and love into the world. That’s what I can do, and that’s what I can focus on. If you want some happiness, I’m here to help. See this beautiful thing I’m working on this week?

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Sweet 16

I remember 16 years ago.

At this time, dinnertime 16 years ago, I was barely able to stand, afraid the hole that stretched across the bottom of my belly would rip open and spill my guts out if I did. I had only just returned to my hospital room after my first trip to visit my babies. I was still groggy from my two days on magnesium sulfate and a surgery that ended without anesthesia and the aftereffects of a failed spinal.

It was after sunset when I made that visit. I remember the darkness outside the windows, and the super bright bili lights over each open warmer made an island of light at each baby’s bed. I remember being wheeled in to the room, rolling from one island of lights and beeps to the next.

Their heads had little knit caps on, their eyes were covered with shields to protect them from the lights, and the tubes and connectors for the high-frequency ventilators covered their mouths, noses, and cheeks. IV lines ran into the stumps of their umbilical cords, a silver pad on their chests monitored their temperature, and a pad wrapped around their feet measured the oxygen levels in their blood. Their red skin had been covered with lotion to stop it from drying out. They had no nipples, and their ears were just flaps of skin with no cartilage. If I touched my finger to a palm, the only amount of touching I could do, their fingers would grasp, reaching barely halfway around my finger.

I could see their chins, and I remember even at that early age being able to see my grandmother in David’s chin.

It would be two more weeks before I would be allowed to hold them, the nurses carefully transferring one baby from the warmer to my waiting chest, a two man team required to move the baby and the CPAP tubes, the feeding lines, the monitor lines, a third nurse waiting with a warm blanket to cover us both. Two more weeks before I could change a diaper. Over a month before I could even try to nurse them. Three months before I would be able to bring them home, away from the beeps and the tubes and the nosey nurses and infuriating doctors. (Yes, I also know they saved my babies’ lives, but if you have never been the NICU parent, you don’t know what it feels like to have absolutely no say in the care of your newborn babies, to be reprimanded for so much as touching them without permission, to only get to talk to the doctors because they’re participating in a research study about communication, to be ordered to leave your children’s sides because the doctors are coming.)

I read something recently that explained human menstruation as a strategy that evolved to weed out our embryos, the thick lining of the uterus intended not to nourish a baby but to make it as hard as possible for each baby to connect their placenta. I have incredibly heavy periods, so my first thought was that all my children are rock stars just to make it past that first, most hostile barrier to life.

My first children also had to pass a second, even more dangerous proving ground when my uterus said, “Three?! That’s over the occupancy limit! You’re evicted!” and dumped them into the world three months early, unable to breathe, unable to eat, unable to maintain their own body temperature, without functional eyes or fully-formed skin. Each baby individually had roughly 70% chance of staying alive at all, and only a 30% chance of remaining free from disability, free from brain bleeds and retinopathy of prematurity and necrosis of the bowels.

As a group, we had only a 34% chance of bringing all three of our babies home alive, and almost no chance of bringing them home entirely free from disability.

My little superstars beat those long odds. They came home around their due date, healthy and whole.  Today, I have three 16-year-olds. They participate in cheerleading, parkour, and wrestling. They play games and draw and write and sew, and two are even learning to drive. They are smart and determined, each of them with their own unique interests and friends. They are perilously close to leaving my home, just as they left my body 16 years ago, and I know they will do well in the world.

Rock on, Brenden, Tamara, and David. You are amazing. Happy 16th birthday to you all!

A’Kos Goes to Disney, Part Two: The Road There

I just left everybody hanging on our road trip, didn’t I? Life gets in the way sometimes, but I will get the whole trip posted eventually.  Here’s part two:

We’ve made road trips by camping as a family before, but that was many years ago. We’ve camped more recently as a family using a popup camper, but not our own camper. This was our first long trip with A’Kos, our first trip with our new popup, and our first long vacation in many years. Essentially, it was a shakedown cruise rolled into the real thing.

Our first day was set to be 8 hours of driving: 6 to get to the nearest Chuy’s, plus a little less than 2 more to our campground. We got up early, packed as a team, and hit the road at 9:30.

We got to Chuy’s at 7:00pm.

This became the theme of our whole trip. We hit our first traffic jam just south of Toledo, only two hours from home. The kids enjoyed the pretty mosque we got to stare at, but it didn’t outweigh the standstill traffic.

We hit traffic in Dayton. We hit traffic in Cincinnati. We hit traffic in Lexington. We hit traffic in Chattanooga. We hit traffic in Atlanta. We drove pretty hard, keeping steps to a minimum, eating lunch in the van, constantly trying to regain ground lost to traffic jams.

This is an exhausting way to travel, but there is no way around it when you have a deadline.

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We got to Chuy’s in time for dinner. If you are from the Austin, Texas, area, you know exactly what I’m talking about. If not, it is hard to explain, but I’ll try. Chuy’s is a TexMex restaurant founded in Austin in the early 80’s. For most of the next twenty years, there were only a handful of locations, mostly in Austin. The food is very much the epitome of TexMex, food that is near and dear to the heart of any Texan: chips and queso, margaritas, burritos, handmade tortillas, soft and fluffy sopapillas, all of it just about the best of its kind to be found anywhere. This combines with a funky, eclectic atmosphere that is pure Austin weirdness: ceilings covered in hubcaps, strange artwork and pictures of dogs on the walls, shrines to Elvis Presley, cheap 50’s-style tables and chairs.

Dinner wait lines at Chuy’s have always been over an hour at peak dinner time in Austin. When I was a kid, we would drive the 30 miles into town on Sundays after church, eat lunch at Chuy’s #2, then hit Sam’s before heading back home. It was a tradition, one that I sorely missed when I moved out of state. I have been watching as Chuy’s has expanded across the country in the past five or ten years, but the closest location to our home is still six hours away. It’s been several years since I last went to Texas and got to eat some Chuy’s. This visit was everything I’ve been waiting for.

Camping and the rest of our trip? Not so much. We rolled in both nights after dark. We forgot that you have to pull up the stove and sink in order to have power inside. We forgot to buy and bring a water hose. We forgot a can opener. We lost all of the milk we tried to bring along to spoilage. We didn’t pack quite enough bedding for everyone. We forgot measuring cups. We got caught in a hurricane-strength downpour not once but twice, rain and wind strong enough to get into our main storage bin and soak all our groceries. We spent our second night in the gnat capital of the world (no kidding, there was even a sign at the front desk talking about the gnats). We would roll out in the morning with storage bins unlatched, steps still out, children still needing bathrooms. We seemed to be sharing I-75 with the entire east coast, and we had to pass one army munitions caravan three times before we finally pulled ahead of them. Our second day of driving turned from six hours into ten.

We got there, though. I had some help from my new apprentice drivers, Brenden and Tamara. Tamara earned her rush hour creds in Atlanta, and Brenden discovered just how annoying it was to be on the receiving end of seat back kicking. We rolled in through the daily Florida afternoon showers, and were greeted in our clean condo by towel swans.

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Our incentive for getting in early enough on Saturday was a visit to Disney Quest, a five-story arcade where all the games are free. This was definitely an attraction high on the must-see list for the kids, and they thoroughly enjoyed it. Kender didn’t do much, since it was overwhelmingly noisy, so he and Brian spent most of the evening hanging out with milkshakes in the food floor.  The rest of the kids had a blast, running from floor to floor.  There were bumper cars with cannons, a build-your-own roller coaster, whitewater rafting, 3-D pirate battles, and more, with tons and tons of arcade games on every floor, all coin-free.

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A great week was still to come.

Learning How to Run

I first learned how to run just a few years ago. I have never been an athletic person. I was always the musician, the geek, the bookworm. What got me started on running was seeing an old high school friend take up the challenge via the Couch to 5K (C25K) training method. She also was not somebody I remembered as being athletic, but she was able to take this program and end up running a whole race. So even though I had never run more than a few steps at a time in my entire life (even in school PE classes I managed to avoid it mostly), I took up the challenge to run a 5K.

When I started out, it was a secret. I asked to go shopping at the sporting goods store for my birthday instead of getting presents, but I didn’t even tell my husband why. I was so afraid of failing and looking stupid for trying. I told my oldest son, but only because I asked him to babysit when I went out the first time. That night, I told my mother, who was in the hospital at the time, because I wanted to share how proud I was that I had gone for a run.

I didn’t tell my husband for a few weeks, going out in the mornings after he left for work and before most of the kids were up. I struggled with the running. I felt like I was going to die after every run. I felt like I couldn’t breathe, like I was going to fall over. I even pictured myself just falling over at the side of the trail, collapsed until somebody came to save the stupid fat lady who thought she could run.

One day, I was doing my last run interval of the day while running up a hill near the exit to the cemetery I frequented. I kept going and kept going until at last I had to stop, I knew I just couldn’t finish the interval.

The announcement to stop running came less than 5 seconds after I stopped. I had almost made it!

I never quit early again. I always kept going, just a few more steps, just a few more steps, just to that tree, just to the next tree, anything to keep myself moving.

And within just a week or so of that run, I suddenly realized that I knew how to run. I had figured it out. Whatever the trick was to running, whether it was deep breathing or pacing myself or stride technique, I had figured it out. I no longer felt like I was dying. Sure, I was a slow turtle in the grand scheme of things, but I was running.

I had to quit after a couple of years because I pushed too far. I was so excited to be a runner and to realize that I could do this, and I wanted to see just how far I could go. Turns out my limit is probably 8K. And that’s okay. That’s more than I used to do, and pretty soon I’m going to get back out there and kick it again. Because now I know I can do it.

A’Kos Goes to Disney, Part One: The Planning

We’ve had a timeshare since before we had kids. I grew up in a traveling timeshare family and really liked it as a kid, so I pushed for the some experience for our own family. When we had triplets, and then three more kids, we constantly outgrew the units we owned, so we never used it as much as we had hoped. A couple of years ago, though, we were finally able to acquire a week in Orlando in a unit big enough for everybody, and the countdown began. This past Christmas, we announced to the kids that the time had come, and this year we would take them to Disney.

Everybody except Kender was excited, and more than okay with the saving we intended to do leading up to the trip. Kender never really paid much attention. He doesn’t watch TV or movies much, so the characters meant nothing. He also hasn’t done rides very often anywhere. As we got within a week or so of leaving, with planning and packing going on full time, he realized we were going on a trip, but that was about it.

One happy thing happened shortly before we left: Kender finally started saying things like his name and age, his dog’s name, even his parents’ names. This is a huge milestone we’ve been waiting for years to hear!!

Getting to Disney was the first obstacle. A place to stay in Orlando we had. How to get there? Flying is out, partly because of expense (Have you ever priced plane tickets for a family of eight??) and partly for political reasons. We needed to plan for at least three days travel time each way. We put planning this part off for way too long, until we happened upon a used popup trailer for sale that would sleep everybody. Problem solved: we’ll camp! Cheap, and we felt comfortable camping after borrowing a trailer from a friend for a couple of trips.

Planning our time at Disney was another step in preparation. I’m a big planner, especially with such a big family, so when a friend told me about http://touringplans.com I was in planner heaven. These folks have spent years collecting data on the Disney Parks, and you can use their computer and database to plan optimal trips through the parks based on what you want to see and do, how fast you walk, fastpass times, and predicted line times at different times of day and year. They even have an app you can use to reoptimize your plan during your visit.

Armed with our camper, our touring plans, and our A’Kos, we felt we were up to the challenge of taking our large family to the ultimate family destination.

You have triplets???

I can completely sympathize with the mom in this story. These days, I don’t have to tell anybody that I have triplets. If I mention it, it’s because I am at that moment prepared to discuss them, to answer questions and generally engage in conversation about them. When they were babies, though, it was never optional.

I took them everywhere, three babies all lined up in their triple stroller. You couldn’t miss them. They were obviously the same age. A neon sign could not be more obvious.

Having the triplets was not the first time I was in the presence of a neon sign like that. I am well aware that a blind person walking with a mobility cane attracts the same amount of attention, the ogling and the stares and the heads turning to follow us as we pass. Nor was it the last; Kender and A’Kos attract just as much attention.

The difference comes in how people treated us. With disabilities, people stare, but they generally don’t approach. It’s rude to talk about somebody’s blindness, their cane. People stare and then try to pretend they weren’t, and unless they are interacting with us for another reason, they leave us alone.

Not so when you have multiples. People will come up and admire them, touch them, and ask all kinds of questions. They get into personal issues that would never otherwise come up in conversation with a stranger, details about my health and sex life. They don’t ask if I want to talk about these things. My very existence in public was assumed to be permission enough.

Most of the time, I handled this okay. I broke down in tears once when a woman commented on how I must have so much help, because in reality I had none, and she actually enrolled me in her own church’s program for new mothers, bringing us food and cleaning my house for a while. (I still want to pay that forward someday!) But mostly, I smiled and answered questions.

Until one day at the mall. I was having a hard time that week, and I decided to go walk around the mall, to just do nothing and window shop for a while. A woman in a wheelchair came up to me and started asking those personal questions, when I was in no condition emotionally to interact with people, and I just snapped. I starting throwing the questions back at her: Why are you in a wheelchair? How do you manage it? Does it even bother you?

Rude as hell. And she was very offended.

What was the difference, really? And I said I was upset, and I was not in the mood to talk. What did I need to do, hang a sign on the stroller? Like the giant “Don’t pet me!” patches people put on their service dogs. She still was offended.

For some reason today I was thinking about that day in the mall, and then the story about the twin mom and her signs and the backlash she got showed up in my news feed.

I get it. I understand. I sympathize. I was there.

Meltdowns

I’ve been saving up blog posts for a bit, making note of things I want to say but not finding the time to write the posts. This one caught me at just the right time, though.

This video recently came across my feed. It shows an adult woman having a meltdown, and her service dog doing his job of disrupting and calming her.

Normally, we think of meltdowns in terms of children, especially autistic or ADHD children. We think about how they look like tantrums and how to convince bystanders that they are not just the result of bad parenting. We think about what causes them, fatigue and overstimulation and pain and diet, and we work to modify the environment as much as possible. We have our service dogs for calming and disruption, and as parents we are always on the lookout in new places for where we can safely take our child when the next meltdown hits.

How many of parents fully realize that these meltdowns might not be something their children outgrow? I know a few spectrum children personally who show no signs of leaving meltdowns behind even as they approach 21 and beyond. How many of us think about how the world is going to deal with our adult children when they meltdown in public?

How many adults like me, who skated under the radar as children, realize what is going on when they finally hit their breaking point as adults?

It’s not a pretty picture. Autistic adults have been shot, tazed, and otherwise assaulted as if they were dangerous criminals when all they needed was a temporary reprieve from the assault on their senses or emotions. People who are already self-harming in a meltdown can lash out instead of calming if they are approached aggressively, and when you’re talking 250-lb man instead of 50-lb child, things can get out of control in the blink of an eye.

I was lucky. My first adult, “public” meltdown resulted in a security escort and a lifetime ban on entering the medical building where it happened. But I didn’t get arrested, and since then I’ve learned to just shut down when people are around, to wait until I can run and hide before letting it out. I focus on my kids, which gives me something that needs doing, that keeps me from having to look at anybody else, that keeps others from talking to me.

What if that office had arrested me instead of giving me a room to let it out and then letting me leave?

What about those who can’t hold it in until they can hide, who don’t have an understanding companion or an ever-needful set of children?

I know I’ve done my share of railing against phony service dogs. But not every little dog accompanying sighted adults is a phony. Some of them are there do to exactly what this dog is doing, to help calm and protect their owner until they are in control of themselves again. And you may never ever ever see these dogs actually do their job in public. Often just the presence of the dog is enough to help the person hold it together long enough to flee.

And if, one day, that seemingly-normal adult finally reaches their breaking point in public, that dog and its presence could be the difference between an escort and a death.