An older woman at the store the other day told me to put a jacket on my child because it was cold outside (it wasn’t, and I always carry their coat with me in anticipation of comments like this when it is). I responded firmly but as kindly as I could manage because I realize this person is from a generation wherein this sort of interjection was deemed more acceptable,  “Everyone perceives temperature differently. My child is hot-natured, but thank you for your concern.”

This encounter frustrated me so much that I was able to order my thoughts to respond coherently. Usually I am so caught off-guard by these types of implications (that I am in some way a negligent parent because someone sees just one tiny moment of our lives in passing) that I can’t speak, and I end up running the situation through my head for weeks and months, a thousand times in endless scenarios where different words were exchanged and the outcome varied.

Maybe the polite social response would have been something less direct. That’s the thing, though, even after thirty-five years, I still don’t know what that response is in most situations. I know what my response is to unsolicited commentary, and it’s to tell someone when they are overstepping as gently as I possibly can.

Like many neurodivergents, how successful I am at recalling the scripts for Proper Social Interaction that I’ve managed to memorize depends on the amount of stressors I’m dealing with additionally. But the thing is, if allowed to communicate in a way that is natural for me, it turns out that my social goals for conflict resolution are different. My intention is not to placate for temporary and one-sided peace, it is to course-correct for maximum harmony within the entire social system.

None of us are special, but we all matter. In fact, I think we all matter equally regardless of age. With this perspective, I approach social situations as an exchange. Many people lead lives of extreme social imbalance where they are expected to endure the negativity of others for the sake of superficial harmony but inwardly they carry around a lot of unnecessary suffering. The negative energy is conserved from the initial interaction, causing the misunderstandings to resurface at different points, directed at different people. I view successful social interactions as equitable exchanges which should be fully resolved at point of contact, end neutrally, with no negative overspill into interactions with others. How well I do this now is mightly influenced by years of masking and bending myself into someone who internalizes more negativity than I should because our social hierarchies require this to some degree, but I’m coming back to my truth.

My inate autistic ability to harness what may be viewed to the unacquainted as a “fuck all” attitude in social encounters is a double-edged sword that can be perceived as too rough when I am trying to relay facts or find myself teetering over the edge of a meltdown, but can be very impactful in establishing boundaries when necessary. It’s a combination of not being able to find the words because verbal communication is not my “first language,” the inability to recall the proper social protocol, and the absolute refusal to abide perceived injustice. As much as I struggle with my own overtness with my very strong-willed miniature, at the end of the day, I am grateful that they are unyielding in their stubbornness because it will also serve them well outside of our home. Unless you manage to break the spirit of an autist (which is unlikely, as we are born tough as nails — there are entire “therapies” formed with the goal of breaking us), you will find yourself with a loyal and fierce companion who may not be able to sugarcoat social niceties for you but who will go down fighting in your corner.

As such: children have a right to determine their own comfort level, just like adults. Sure, we have to guide them when it’s dangerously hot or cold, but the in-between stuff should be up for debate given the particular weather conditions.

We unintentionally created a new ritual, which is not uncommon in a house full of neurodivergents, where we go to the “doughtnut store” and eat our doughnuts while we read a book aloud. As an outdoor play facilitator, I tend to always have a children’s book in my backpack, and so the first week I pulled it out and we decided to read. It’s a spacious enough place that my reading doesn’t appear to be a distraction to anyone around, particularly because there’s a doughnut assembly line going in the background which creates enough white noise that individual conversations aren’t very pronounced. We liked the time together so much that we’ve decided to make it a weekly endeavor.

Despite a stressful week of illness and grumpiness due to mismatched levels of energy each day, we’ve managed to create a bird feeder and the youngest among us has learned the basics of sewing. I didn’t intend to be a homeschool parent, nor do I intend to remain one exclusively, but learning and creating together without a rigidly enforced timeline has been my greatest joy so far.

“Education is not a race, it’s an amble. Real education only occurs when everyone is ambling along their own path.”

By my own standards, I don’t have many parenting victories to speak of. Most days are exhausting, and I often feel that I’ve done okay but never exceptionally well. Existing in a state of almost constant sensory overwhelm – coupled with a lack of true community that I can rely on to recharge – plays a large part in my feeling too tired to parent the way I always hoped that I could. However, I do have this one thing.

There’s an episode from the anime series Mushishi called The Pillow Pathway.

Nebula goes through phases of experiencing bad dreams, and recently I remembered this episode of Mushishi where the protagonist, Ginko, travels to meet someone who is afflicted by mushi of the Imeno no Awai variety (mushi of the Field of Dreams). The word “mushi” loosely translates to “bug,” and as the story goes, mushi are ethereal “bugs” which are not perceptible to everyone, but they are still very real and can wreak much havoc in the lives of those afflicted by them. Ginko is sort of a sage/healer type dude (a Mushishi) who can free people from the burden of mushi infestation.

So, Ginko comes to this guy – Jin – who is having just a real shit time sleeping because his nightmares are making pretty scary stuff happen in the physical realm – constructing a terrible reality from his intensely frightening dreams. And these mushi live in the pillow of the person having the bad dreams.

Enter my brilliant parenting strategy, my single claim to fame, my “bigantic” moment, as the little one would say:

I told Neb that one could simply switch pillows to get rid of bad dreams, because that’s where they’re stored. So now, whenever they have a nightmare, we switch pillows so I can “reset” it for them. And off to sleep they go, comforted.

so show me family
all the blood that I will bleed
I don’t know where I belong

We left all of our family photos behind. We’d decided that because we were essentially severing ties, it was okay to do away with the historical evidence.

A fresh start.

The only regret I can clearly identify from this terribly painful move is that we lost our ultrasound photos in that box, not realizing they were in there at the time of disposal. I’ve decided to cling strong to our cultural identity rather than to specific people because those persons have proven to us that they aren’t safe – and why should we be without a place to belong just because those we were assigned to at birth can’t love us in a way that isn’t deeply destructive?

And so do you.

I saw this quote recently. While I don’t know anything about Anne Lamott, I do feel deeply impacted by this statement:

 

September 22nd, 1999 early on a beautiful, sunny and very typical Seattle morning. My partner and I were slowly waking up with all the excitement and hopefulness of youth and new love…and new life! As we lay there entangled in blankets and arms, my large, round, growing belly made our small bed feel all the smaller, so we clutched tighter and all three of us cuddled for a few more minutes. My partner, myself and our excitedly kicking unborn child, all stretching out the minutes before we had to start the day, a day that would turn quickly, sharply and into great weighed darkness. For now though we had Fall sunshine, warmth, and all the hope and love a new family could wish for.

My partner (now my spouse who I will call: Sol) and I had only been together for 9 months when we found out we were going to be parents. We were young, 22 and 24 and totally unprepared for a very unexpected pregnancy. Being the smart, in-control feminist that I am, I was firmly engaged in a rock solid birth control pill regime. No unwanted pregnancy for me! Right? Sure “The Pill” has a very slight failure rate even when taken religiously, and that rate becomes even larger when taken with certain other medications, but that wasn’t going to happen to me…until it did.

The day I found I was pregnant, I was fresh off a soul searching, mind altering, desert rock climbing trip. I had a severe sunburn and sought medical attention for it once home. As they were treating my blisters and burn, they informed me that all young, sexually active females get a pregnancy test. I laughed and remember telling them “It’s your wasted money!” I hadn’t missed a pill or a period. I left before I even got the results, I was that certain. So when the doctor called me at home 20 minutes later and told me I was pregnant, I handled it by laughing, telling the doctor he was many things, but mostly wrong and hung up. He called back and I spent the rest of the day crying. Sol was out of state for work, we didn’t live together and this was before the great cell phone invasion. I had to wait to tell him until he could get to a phone at night. Spoiler alert, he took it extremely well and was instantly and fervently supportive from minute one.

We had decided as a still relatively newish couple, that a baby was not going to force us into anything that we were not ready for. I made the choice to keep the baby, and we both chose to keep our own apartments a few blocks from each other. We were in love for sure, and would parent together for sure, but moving in and getting married was not for sure, and though dedicated, we also thought it modern and pragmatic to let everything personal play out naturally.

My pregnancy was uncomplicated. I felt amazing, looked great (when I wasn’t throwing up) and all my midwife and doctor’s appointments were on time and perfect. We had a healthy mom and baby. Sol, was the picture of support and eventually both sides of our family were on board and excited for the new arrival.

Fast forward to that beautiful September morning. I was 27 weeks 4 days pregnant. My belly was expanding and my unborn child was very active, moving the most whenever Sol would play his bass guitar. We were so happy and so hopeful.

Finally I broke first from the bed and headed towards the bathroom with baby firmly on my bladder. I sat down on the toilet, peed and then screamed. My unbroken amniotic sac and my child’s foot were descending into my vaginal canal. There was no pain, no signs this was happening or going to happen, it simply happened in the blink of an eye.

Panicked I called for Sol, who helped me to bed and reassured me that I was most likely over reacting to something banal and normal with pregnancy. He took one look and called 911.

I was on the labor and delivery floor and being assessed by 3 different types of specialists within the hour. The first doctor thought nothing could be done, but to deliver and hope for the best, but the other two disagreed and I was placed upside-down, and on a plethora of medications to stop what had now turned into full blown labor. My sac was still not ruptured and my child was still alive and inside me. The plan was to see if the foot and sac would go back into the uterus and then sew my cervix shut for a few more weeks. They also started me on drugs to prepare the baby’s lungs for preterm delivery.

Ok, we had a plan and some hope! We focused exclusively on that and each other for next 14 hours. We watched the heart rate monitor and ultra sounds in awe of our little one, for hours those images and sounds were our life line.

When the fever set in, the doctors became mildly concerned and started me on a mega dose of antibiotics. 17 hours into a labor they could not stop, my fever spiked to 106 and could not be brought down. I had developed an infection from the descended sac and was extremely sick. They wanted to rupture the membrane and induce labor right away.

I declined.

They told me I was too sick and could die if I didn’t induce.

I still declined.

I was fever altered and not at all in my right mind. All I wanted was for my child to get every chance they could have for survival. I couldn’t force myself in that moment to choose what step to do next, so it was made for me. My water broke spontaneously and everything started moving at the speed of light. Doctors, nurses, Sol, other family members…all fast moving blurs in a chaotic time warp.

Then everything went black.

I had suffered a febrile seizure while pushing out a breech, pre term baby. The cord became compressed by the baby’s head as it lay lodged in my pelvis while I seized. Medications worked quickly, my seizure was controlled and our child was freed from my body on September 23rd at 2:32 am.

We learned two things immediately: we had a son and he was not alive. Though he had a weak pulse for 3 minutes, his very tiny body had been deprived of oxygen for too long, and he was brain dead. My son, who looked just like a mini version of Sol, was dead. We would not be bringing him home.

As we held our son, we exchanged grief. I wailed a sound that I am now convinced is the noise made by the ripping-soul of a parent who loses a child. It was primal, and animalistic, and all I could manage. Sol cried, while continuing to apologize to me for something that neither of us had any control over. We were broken open and everything was raw and spilling out.

The nurses dressed him, took pictures, hair clipping and printed his hands and feet. Together with his swaddle blanket these items along with his birth certificate were placed in a blue satin box and presented to us before I checked out of the hospital a few days later. Other women were being wheeled out of L&D with babies, balloons and flowers. I was being wheeled out with a small blue box, a hole in my life and a caravan of crying family members.

His funeral was a almost 3 weeks later, due to me bouncing back and forth from home to hospital. I developed further complications that ended in multiple surgeries and a near loss of life. I was weak, pale, shattered and still bandaged on both arms from all the IVs, as I stood with help and read my hello-good bye letter to my precious son. The child that would never laugh, smile, speak, love, grow, be. His life was brief, but impactful. He made me a mother on that day and changed my life forever.

Today he would be a man. 20 years old and heading in who knows what direction in a limitless life. 20 years later, I still carry him, we all do. His father and I release little viking style boats with flowers and painted rocks into a river or lake every year with his name on it. His now, 7 year old sister has her own tiny story about her brother and will join us in remembering him today.

Though the deep, all consuming grief is gone (due in large part to my lovely daughter and amazing husband) it is replaced, like all healing wounds, with a scar. A flatter, less noticed scar, but a scar all the same. Always there as a reminder that one perfect day in Fall, a little boy was born, lived, and died and in the immortal words of Dr. Seuss:

“A person is a person, no matter how small.”

~Paper Mune

I am a traveler born and raised, and while I look back at my childhood mostly with painful retrospection, this part of it has always enthralled me, and still does. I am that wild wanderer who never has a problem picking up and moving on effortlessly. I have moved my entire life and re-established myself so many times that it became an art form. My entire childhood consisted of more homes, and states than I can reliably count. It gave me the wonderful ability to make friends anywhere and quickly though. I am a Wendigo, a whirlwind, a free wheeling-metaphor mixing wild woods traveler. Right? I can always re-engage with the world and re-establish base! I have literally counted on this ability my entire life. It is my survival strategy.

So when I reached a bump in the road that seemed impassable, I kicked it into high gear and somehow made it over. When I started to hit a series of life altering bumps it became harder to use that “just keep swimming” attitude to move forward.

Now I find myself at an intersection of extremes and a not so clear plan on which way to go. I am a 43 year old mum to a young child with special needs who rocks my world and delights my heart. The culmination of years of pain turned into joy and my heart’s desire made real. To say I love her is of course an understatement. I am also a religiously exiled-queer-fat-tattooed-atheist-hard left mama with chronic disabling health issues and I guarantee the oldest member of PTA, who is smack dab at the starting line once again and about to epically, but tenaciously blunder my way through.

So, I’m going to sit here awhile and plot my course. Hopefully I find my groove, my voice, and my people along the way.

Happy Trails!

~Paper Mune

I haven’t written for so long that I really don’t know where to start. This blog comes with a certain level of expectation because of how I chose to name it, and because of that I find myself constantly paralyzed in fear when I think about writing.

I’m not bold, typically. I am the kind of person who seeks to perpetuate harmonious interactions with everyone involved in any situation, and I abhor conflict to the point of straight avoiding an aggressive person forever and always, the end. The only kind of conflict that I willingly engage in is the type that is required to keep my loved ones from being mistreated. And sometimes that mistreatment is systemic.

So let’s examine that?

Pretty well regarded opinion: mainstream schools as they exist in the United States are insufficient in meeting the needs of most kids.

My opinion: They’ve always been insufficient. This isn’t simply a matter of decreased funding over time. As for any marginalized group, we all know that the Good Old Days don’t exist; those were just the days we were forced to suffer in silence. Culturally, we have begun to recognize the human rights of children and in doing so now have cause to reexamine the institutions which guide their development.

…And they’re pretty damaged. And they’ve always been pretty damaged. So the particular journey I’ve chosen to document -relevant to this blog’s title- is that of my chipping away at what we’ve always accepted as sufficient in order to build something excellent for a cohort of neurodiverse kids (including my own) in my own community.

…is to do it. So here it goes.

I’ve been putting off starting this post for six months. That has to be some sort of record for procrastination. I’ve mostly been dealing with a feedback loop of anxiety that looks something like this:

go to the host site to write the initial post to get things rolling! > remember that the first few times I write after an extended break always feel rough and lack depth > promise myself to write a few practice entries before I submit something worthwhile > never, ever have that much time > become overwhelmed by the perceived enormity of the task > fail to act but definitely feel super guilty about it > go to the host site to write the initial post to get things rolling!

Hi! Hello! Welcome.

Myself, and two extraordinary friends have come together to write about the nitty-gritty experiences of motherhood. Not just the late nights or the throw-up, and all that shit we all deal with. This is a community for moms who are atypical. Minorities within the minority. The heretics. The mamas who want better for our kids than society is willing to give them, and won’t fucking stop pushing down barriers until we disrupt (for the better) the whole goddamned system.

Let’s do this.