Can we meme our way out of this?

autism, COVID-19, pandemic, quarantine, special needs parenting, Uncategorized

Platitudes are like dick pics. Searching for which cliche fits best in response to someone’s expression of anguish is like searching the garbage for a used condom. Undignified, pointless, and disgusting.

It’ll get better.

Keep your chin up.

Enjoy your time together…

This too shall pass.

They grow up so fast…

We’re all in this together.

We’ve all used these words. We’ve all felt that hopeless moment of trying to cheer up someone and grasping at giving reassurance but just coming up with feeble banalities.

I’m not quoting a study or going to make a reference to a famous pious oracle or analyze the success rate of platitudes for you. I feel fairly confident in asserting that they’re as wanted as unsolicited dick pics. There’s the danger of being redundant when saying “unsolicited dick pics” but I thought I would at least specify for those of you that might feel judged by requesting them yourselves. No judgment. I am guilty of oversharing about my kids and posting pics of random foliage and food so whom am I to judge, mea culpa.

So when you, like myself, find yourself barely hanging onto your sanity while trying to survive this pandemic and being at home nonstop with your offspring you might bristle to the point of looking for a pointy object or hitting the “unfriend” option when someone says, “You’re not alone,” or, “Hang in there.” Only to be less cringe-worthy than, “It could be worse,” or, “Have you ever tried a gratitude journal?”

No, “Janice”, I haven’t. You know why?! Because it’s pretty difficult to find the bright side when you’re back to potty training your six-year-old who is regressing or getting woken every three hours by the other child who is having night terrors and screaming in her sleep. And NO I don’t let them watch the news and YES I do explain the bare facts without the grisly drama of the reality of our situation.

This same person sent me articles about accepting my children’s autism because clearly I had not done so if I was getting frustrated with my circumstances…don’t mind me while I go scream into a pillow that’s not embroidered with mottos or, frankly, clean.

Guess what, “Janice”?! I am ALONE unless you’re coming here at 3 am to help me put the kids back to bed and come up with “plans” for the day that will then be rebelled against because “we don’t wanna” is the refrain. I don’t need a self-help article I need some actual %&#@ing HELP. Like most in my situation, we don’t need the judgement of someone who has no possible way of relating to our life or experiences because receiving your opinion is about as wanted as a dick pic.

(By the way, “Karen” is the popular name to use when being derisive nowadays but I know at least two Karen’s that I love and admire, including my mother, so I go with “Janice” thanks to John Oliver so – blame him!)

Receiving a platitude in response to an attempt to reach out for connection in an act of vulnerability is like allowing someone to hold your newborn baby and that person sneezing in the baby’s face. All of us are seeking support and love from those we care about in a stressful era yet we’re all reacting and processing current events in our own way. Some, like myself, are siloed in my existence of self-quarantine out of caution, not preference. It’s painful for my kids when we see people gathering in playgrounds or parks and we’re not able to join them because we’re immunocompromised. 

Currently, it’s not safe, it’s not allowed by the local government, yet people are still doing it and it’s extending how long we have to eventually stay on lockdown because that’s where the spread of the virus is originating, “community spread”. Not only is it mentally painful for anyone to be cooped up this long (going on four months now) it is horrifically unfair of people to not grasp that their individual decision to not follow health cautions is directly impacting others’ mental and physical health. That their need for convenience and comfort by not wearing a mask or staying home is threatening the health of countless people and prolonging the suffering of others.

Much of my daily life before quarantine looks not all that unlike my life now except the difference is the effect it’s had on my kids’ mental health and the sudden lack of support from anyone. Every single support worker or therapist disappeared from our children’s lives until just recently. Video chats are the nemesis of people on the spectrum. It’s a hateful cocktail of direct eye contact, forced small talk, and being trapped in a conversation. I might as well douse them in honey and pour ants on them. It would be kinder.

Then there’s the fun of attempting to interact with the outside world. Oh joy! We wear masks and keep our distance. Our neighborhood? Not so much! We honestly played a game of “mask bingo” and I gave them a sticker every time we spotted someone wearing a mask when they passed our house. It took them three hours to fill the card. We see at least twenty people go by in an hour. Do the math, I’ll wait…

Our state is supposed to be just coming out of a lockdown despite the numbers doubling and tripling every day. Are the numbers reliable? Who knows. Google CDC, WHO, or your state health authority. There is no reliable testing, no reliable tracking in Oregon, and testing is not readily available for most people especially those that lack transportation or have obstacles to obtaining medical care. Like, say for instance, being autistic.

“Maybe if you found some “me” time…”

I appreciate a crass or snarky meme as much as the next girl but if I get one more flippant “hang in there” from a neighborly stranger passing by without a mask on or keeping their distance I might just start creating chalk art of penises with big droopy balls to enforce the six feet of distance and draw masks on them for good measure.

Many of us are struggling. Social media and memes don’t amount to a hug or a trained professional being supportive of our family’s medical or mental health needs but it is amazing what a physically distanced chat or an unexpected phone call from an old friend can make. I’m trying to remind myself to do that for others every day and remind myself that I’m giving my kids a healthy childhood and that is immeasurable given they’re living through a pandemic. There is no graceful or perfect way to survive a plague other than that, to survive. Every day that you’re healthy and you’ve kept your kids COVID free is a good day. Celebrate when you can if even just to have something to look forward to. I know I do. I woke up today because I planned cake for breakfast. Suck on that “Janice”.

“Keep it up, you’re doing great…”

“It won’t last forever…”

I really hope I’m wrong and the seriousness of this virus is being exaggerated but I’m not willing to gamble my kids’ lives over a conspiracy theory or my need for social interaction by going to a party or a bar. Just in case you need to hear this cliche:

“Wear a mask. Wash your hands. Stay home if you can.”

Support our health care workers and donate. Show first-line workers of every type dealing with the general public the decency and respect they deserve. Be cautious and tip well for &#@! sake.

A huge thank you to everyone that risked their lives protesting police injustice and systemic racism. Those of us that can’t physically be there support you and hear you.

I really hope we’re not alone in our struggles because I hope all of you are safe and survive this pandemic with your lives and sanity intact.

Home On The Range: Pandemic Parenting

COVID-19, equality, human rights, parenting, politics, PTSD, quarantine, special needs parenting, trauma

Introspection can be a friend or a foe in this era of self-quarantine. The first few weeks I hoped it would be my salvation and that it would drive me to find ways to improve myself and our lives, maybe even our house! That was just my shocked pandemic brain channeling self-improvement books and disaster prep articles. I might as well have created a sock puppet to talk to about my plans ala Tom Hanks’s volleyball “Wilson” in “Cast Away”. The realistic me, two plus months into self-quarantine, settles for finding the bottom of the chip bag and waiting for the newest update as to whether or not the summer camps or schools open. The bottom of a chip bag is far more achievable because so little else is within my control. Except for not wearing a bra or eating gluten. Those are attainable goals and they’ve been completed.

There’s a dichotomy to my days as of late. The sleep-deprived optimistic me wakes with good intentions and plans for the day to entertain my children while stealthily educating them. Then there’s me at 2 o’clock at two plus months in, handing out contraband snacks, and settling for them retreating to their respective hiding spots with their screens. One fixates over any mode of transportation and the other over history. I found myself saying the other day, “No, please, I don’t want to play Hot Wheels anymore and I don’t care who created the first flag for the abolitionists. I just want to use the bathroom.”

It was well after two o’clock, so a low moment, when I read “The Collective Trauma of COVID-19” (Portland Monthly) and found myself reiterating the thought that runs through my head as of late like an unwanted freeway billboard. I’ve never felt this alone while having so little privacy. This is the parental version of incarceration except my jailers are dressed in glorified pajamas, the interior is Ikea and yard sale castoffs, and I’m just as likely to have someone stare at me while I deficate. My every expression and action is scrutinized and recorded in the two minds of my children that are looking to me for their solace yet I’m adrift as much as them and I have to smile in response to their concern. Find a way to explain COVID-19 yet again. Reassure them that they will see their friends again someday. Hope right along with them that the unknowns that plague us will be answered at the end of this pandemic.

I looked up from reading the article on my phone, checked on the kids digging mud holes in the yard, and took in the cacophony of construction noise that surrounds our house from every direction and the flood of people biking and walking down the “pedestrian friendly” street that passes our yard. People rarely keep an appropriate distance from one another or wear a mask. Lucky for them that the city deemed certain streets to be off limits to cars but very unlucky for us that we have so many people to dodge just heading out the door. We feel like a zoo exhibit every time we’re in the front yard. My son running naked in circles reminiscent of that streaking scene from “Four Christmases” doesn’t lessen the attention either. Like the mom said in the movie, “When he gets to hurtin’ on the inside he shows it on the outside.” That’s true of my son as well.

Aurora Sherman observes in the article, “We’re living through a collective trauma event.… It’s not just stress, it’s not just anxiety,… this rises to the level of a truly traumatic event, and every person’s physical body and emotional psyche responds to trauma slightly differently.”

It echoes my thoughts about my kids and the worry over the long-term consequences to their mental health. It took years within their short lives to bolster their confidence and self-esteem so that they could navigate and tolerate the general public. But after this? My fear is that isolating people that already seek isolation, like many that are autistic, perpetuates a tendency that is going to be an uphill battle to undo. It took years to achieve the progress they’ve made at coping with others so how long might it take this time around? My heart breaks for them over the “what if’s” and I try to not jump head first down the rabbit hole of internet research hoping my fears are unfounded.

We take walks and talk to neighbors from a distance, bike rides, and Zoom chat like the rest of you that are at home. But the video chats have lost their novelty. The neighborhood is well-traveled territory and their anxiety rises closer to the surface every day as restrictions loosen and people edge ever closer to us. Bike rides have become the human version of Frogger when we are forced to jump out of the way to avoid close contact. People laugh at them for wearing a mask and making way for others. I’m proud of them for being vigilant in wearing their masks and mindful of giving enough space from others. Then again, they like keeping away from people but miss the spontaneous urge to hug people. They’re my sweet little jumbles of paradox. They are also, like myself, immuno-compromised and well aware that they are more susceptible to the virus. We don’t let them watch the news or read over our shoulders but they are intelligent and can sense our exhaustion.

I tell myself to make the best of it, try to find the fun, try to enjoy the time with them. The general self-imposed guilt that I could blame on my upbringing or societal norms yet it’s my choice as to whether or not I listen to that voice in my head. Sometimes I feed her chips and she shuts up. Because heaping piles of platitudes don’t heal the cabin fever or worries anymore than the reassurances over life returning to what it once was. I don’t want life to return to what it once was because I want us all to take this chance to embrace the discomfort and fear to make something better for each of us. I hope we discover a life improved for all of us. Whether that’s better air quality or a larger interest in holding our political representation accountable.

I try to distract each other from the “warties” (as my son likes to say) and surprise them with inexpensive activities from scouring the internet or the memories of my childhood. They ask me for stories about being poor and despair over other kids sleeping outside. My son’s astute estimation of disbelief was voiced as, “So they sleep outside like camping – but FOREVER?!”

His sister responded, “Yes (the indulgent laugh of the sage 9 year old), yes, it’s called “houselessness”.”
Brother, “I ‘dought ‘dat meant their house burn-ed up.”
A shake of the head and condescension, “No, no, it means they’re poor and no one will give them a place to live.”

As amusing and satirical as their exchange was, I listened and felt a pang of shame over my past homelessness, a pang of guilt that they didn’t quite grasp what they were discussing, relief that they have never experienced that level of poverty and wondered how they would react if I shared.

“Did you guys know that I’ve been homeless before?”
A chorus of, “WHAT?!”

So I shared some of the factual events of my life without the terrifying details and regaled them with the wildness of living unexpectedly out of a car or a trailer. I leave out the humiliation of eviction, kids shunning me once their parents knew who my father was, the teachers who whispered about me and hid their belongings thinking I would steal from them. The particularly cruel teacher who would call out the names of the kids receiving free lunches and make us line up at the back of the room and wait for the others to file out lest the paying kids had to stand next to us in line and suffer the injustice of waiting on us lowly welfare recipients.

Instead of those details I tell my kids about some of the odd things we did as children to amuse ourselves despite our poverty and they look at each other like their mother has just been replaced by an exotic animal. That we would use cardboard boxes to sled in the snow. Collect sowl bugs, scare them into rolling up into their nicknamed form of “rolly polly”, and flick them to race one another. Or the forts we constructed out of abandoned tires and milk crates from the grocery store that my mother worked at. How yard sales were our department stores and new shoes came from K-Mart or Payless Shoes. Socks were only for winter and blisters from shoddily made shoes were compared like badges of honor. And the golden era of cable television that lit up our world when I was freshly out of the first grade for the summer. My parents scored HBO for free on accident because “somehow” the neighbor’s antenna worked for our house as well. I watched “Conan the Barbarian” and “Risky Business” so many times that I could quote the stellar cinematic masterpieces by heart the following school year. Camps, babysitters, and kindergarten were a luxury not afforded to a latch-key kid like me of the ‘80s.

Part of that reminiscence was sharing with them some of the tamer shows I used to watch as a child of their age. A pattern quickly emerged from this foray. Much like the well established Disney pattern that my daughter identified as “castle logo, parent dies, challenge overcome, everyone gets married”.

We would get about ten minutes into a new-to-them old show and I would turn it off due to it being A.) “too scary”, B.) “too old” or C.) , in my own words and the theirs, “inappropriate”. One of those shows being “Little House on The Prairie”. What in the WORLD was I thinking?!

I pitied the pioneer mom as we watched the show and I shuddered. Outhouses, no running water, a lack of modern medicine (no antibiotics!), no phones, no wi-fi (deep shudder). Yet they did have liberal legal use of laudanum and the great outdoors at their disposal to entertain their children. Mine can’t manage to go on a hike without us having to run away from others and avoid those that refuse to keep their distance or wear a mask. Then I remember the legal use of laudanum again and wonder if the local government should just hand out THC gummies and masks instead of PSA’s about staying at home. Maybe if we’re all paranoid enough we’ll keep our distance because the hallucinations tell us to and we don’t want to leave lest we miss our grocery delivery.

After that brief viewing of the first episode of the Ingalls family (interrupted by the realization that the show was horrifically racist and historically inaccurate) it occurred to me how much I could relate to the mother, Caroline, and her emotional state. Obviously I wasn’t having to sleep in the outdoors and keep wolves away from my kids. Instead, I’m cut off from family and friends as she was. I have the advantage of modern communication but it doesn’t replace the embrace of friends or someone holding your hand. I’m not trying to keep wolves away but an invisible virus that could easily kill my kids just the same. Yet the lack of physical contact and proximity of any help was affecting Caroline all those years ago as much as it is all of us in our current existence.

The additional pressure she must have felt is being felt by all of us parents, like myself, to be the sole source of reassurance and support for our children’s well-being and education. No small feat back in the pioneer days or now. Yet there are homeless families having to contend with caring for their children during this pandemic with just as little, if not less, resources than the Ingalls family. There are Navajo families, a reminder of what my ancestors have experienced, having to survive this pandemic without running water or resources that were promised, by and not delivered for, hundreds of years ago by our government. I have the benefit of an education that I fought for and resources beyond their imagining in that era or still inaccessible to some families in our own times.

Yet, much like Caroline, I’m experiencing an intense form of loneliness and fear that I’ve never encountered in my life. I glimpsed it as a mother of a newborn as I struggled through postpartum. As I tried to put words to what I was experiencing and the spell of those labels didn’t fall into place until years later. Autism. Tongue-tied. Medical PTSD. Trauma.

Much like then, In my thoughts I find comfort. In my mind throughout the day, out of boredom and self-preservation of my sanity, I look for the humor even in the darkest emotions to remind myself that I can laugh and to show my kids that it’s ok to have many feelings at once. That mirth and misery can coexist.

I happen to notice my reflection and comment inwardly “pandemic pounds” and smile at myself. Weight and body image have always been the enemy of women and in comparison to the fear of this virus the insidious trivialness of them is even more apparent to me. People are starving, incapable of keeping a physical distance from each other due to poverty, and forced to work jobs that put them at further risk because those that can afford to stay home have a choice to do so when they do not. We all desire the same things and are experiencing a life we could not have anticipated, for most of us, only a few months ago. Yet we hear of arguments over toilet paper and people hoarding junk food in case their last moments are not flavored with processed foods.

I watch my kids play MineCraft and build a city together, build elaborate cities on our floor out of cardboard and train tracks, construct forts out of tents and pillows then battle over their stake in the land. It’s their escape into their own controlled world where nothing unexpected can happen because every brick is of their design and choice. They explain their building plans to me and lose themselves in their virtual world for a brief respite. Just like I watch travel shows and try to hope that I’ll see those places someday.

That all of us can resume our pursuit of dreams in the physical world and no longer have to rely on the virtual one for our support. I’m not stuck in a wagon, a tent on the street, my neck under a knee of an unjust civil servant, a jail cell, a house without plumbing or sewage, or an internment camp. Yet all of us are in our own form of lockdown until the pandemic passes and comparing levels of pain and discomfort is only a distraction from what needs to be the focus. We need to listen to the scientists and medical professionals that have been sounding the alarms for months and who are working tirelessly to save us. We owe it to ourselves and our kids to listen when others would not and to learn from our mistakes. What if we were to choose kindness and action instead of apathy and resignation? What if the next time someone wanted to troll someone online they bothered to fact check instead?

The kids were worried about the robin “Mama Bird” that we have the pleasure of watching nest outside our kitchen window. She built her shelter stealthily amongst the highest blooms of the rhododendron bush above the branches that I hadn’t had the chance to remove. My laziness is her gain. The brittle dead growth is the perfect defense against any raccoon approaching. Too heavy to be supported by the limbs they’ll fall. Any squirrel will be heard scampering since the limbs leading to her precipice will snap even under their feet as well.

She stares back at me as we observe her. We wonder aloud if she worries about us staring. Just then she turns and faces us with her tail feathers. We laugh and go back to what we separately were occupied by but my thoughts return to those, much like her living among the elements or struggling to provide for their kids, are trying to eek out an existence and make the best of what they have for their children. Let us all hope that we see an end to Twitter bickering and our energies used instead to fix our wrongs and put right what we have broken. Let us all be allowed to breathe and exist without the level of fear we are toiling under needlessly because of the callousness of those in power.

“The Collective Trauma of COVID-19”
https://www.pdxmonthly.com/coronavirus/2020/04/the-collective-trauma-of-covid-19

Welcome to Poverty: COVID era skills

autism, Complex PTSD, COVID-19, Homeschooling, PTSD, special needs parenting, Uncategorized

Some of us who are not accustomed to being this alone are now alone. 

Some of us who are used to only seeing their family for a couple hours a day are now navigating how to be present with each other by choice or not. 

Some of us who have never had to fix things for ourselves, whether it’s food or a bike, are now having to learn those skills or learn to go without. 

And some of us go bat shit crazy like we’re reenacting “Apocalypse Now” and take out our aggression on strangers.

Like the woman who pedaled her bike straight at my kids because according to her they were “going the wrong way” down a two-way street. She parted from the scene screaming, “Go home!” As she continued biking down the street. Yeah, nothing to say to that one.

Or the crazy dude who kept trying to get my kids to pet his dog while simultaneously spitting on the street and telling us that “this is nothing” compared to when he was a kid because our neighborhood was “rough” when he was growing up. Maybe he mistook “COVID” as a new street gang name? No idea. We watched as his dog crapped in our neighbor’s yard.

Not to be out down by my favorite incident, the group of ten assorted individuals (who I find it highly unlikely they all live together in quarantine) who were walking together with their children down the middle of the street, almost a group of twenty, and were upset that I was driving down the same street. How dare I! One of them came by the next day and panicked when we happened to walk out of our side door and leapt into the street to give us space. I appreciated the reaction but it puzzled me as to what happened overnight to change his perspective so quickly from the day before. Maybe all of us are stumbling our way through remembering and adapting to this new reality.

We’re all hitting our breaking point with being stir crazy. Cabin fever has been replaced by “rat in a cage” frustration. I can relate. I’ve never felt so alone while having zero privacy. It’s like I’m in solitary confinement and my jailers are extras from a macabre Nickelodeon sitcom. Everything is decorated from yard sales and Ikea, the soundtrack is tinny cartoon accordions from my nightmares, and I’m randomly woken by bright lights and demands to test my endurance of spirit and patience. I haven’t felt this addlebrained since I woke up on the wrong train in the wrong country (long story).

How many of you out there can relate? I felt isolated before the pandemic but have reached a new level of loneliness forcing me to face that realization. Advocating, teaching, and juggling the needs of two amazing autistic kids has changed me and my outlook on the world for the better. Yet I would be lying if I didn’t admit that it has worsened my PTSD and that my fears for them can overwhelm me at moments. Poverty, trauma, and extreme stress have altered me over the years yet I know that much of my strength and endurance have developed because of, and despite, those experiences.

Homeschooling is a new challenge to many of us and I understand all too well how difficult it can be to juggle teaching and parenting your children. For some of us, this is the first time you’re out of work and facing poverty. Many of us are mourning in isolation. All of us will be affected by this pandemic in a rare bonding moment of trauma we’re experiencing globally. It will shape the current generations and be a historical marker in our children’s lives.

Yet the silver lining is, we can learn and grow from this. There are life skills we can build and share with our children. I grew up poor and it made me a stronger person. At least, that’s what I believe and try to impart to my kids.

That’s right, I already have a set of skills that I never wanted but they come quite in handy during a global pandemic. I’m having flashbacks to my childhood and finding the experience refreshingly helpful if not unsettling. That fear of what the next day would bring and building resilience to meet each day knowing that I would find a way to make it through. Now, for many of our children, they are experiencing this hardship as possibly the first one in their life. For my own, this is another hardship and I’m proud of their determination to cope yet they struggle. My hope for them, and all of us, is that it brings about positive change and this illness takes as few of us as possible.

When you’re a poor kid, you’ve already experienced making do whether you want to or not.

Snow? You’re wearing bread bags over your socks to keep your feet dry.

Hole in your backpack? You’re using duct tape or trying to figure out how not to puncture your finger while stitching it back up.

No food in the house? You’re throwing together whatever produce you can find and condiments that are left in the fridge to make soup. Just ask my friend Tara about my “potato tomato” soup. It had to last me a week and it wasn’t the worst concoction I came up with.

Burn on your arm? You’re gritting your teeth while running it under cold water and then sprinkling baking soda on it to keep it from blistering. That one really left them gobsmacked. They keep wanting to check the scar on my wrist and they’re obsessed with anatomy books now and BBC’s “Operation Ouch” on YouTube.

My kids were in amazement that I could grow potatoes from the ones that we had left in the house. They were in shock that we weren’t going to be using paper products, other than toilet paper, any longer to make our money and supplies stretch. You should have seen their expressions the first time I told them we wouldn’t be buying ice cream anymore but making our own. One looked as if they would swoon and the other pulled a look like I just blew up their toys. That was until I let them help me.

They’ve jumped in with a level of zeal I hadn’t anticipated and now they want to be regaled with “when mom was poor” stories and remind my husband to listen even though “the stories are sad but they’re real funny”. My kids definitely got my sense of humor.

“Mama, tell us about the time you had to get the tick off the dog?”

“Hey, mama? Can we pretend we’re real poor like you were and sleep on the FLOOR?” 

(I love it when my son’s voice cracks and his inflection goes up at the end of his sentences. He sounds like the “Little Rascals”.)

“Papa, did you know that mama grew up so poor she had holes in her SHOES?”

The low moments happen as well. The regression of behavior. A sentence most parents of kids on the spectrum dread. There are habits and acts of defiance I haven’t witnessed in at least a few years and I will be very glad when they recede from our lives once again. For their own privacy, I won’t share all the details but let me just say mastering the skill of cleaning out heater vents is something I never wanted or anticipated would be part of my daily life. Much like knowing the tell-tale sounds of vomit from a distant room.

I manage my anxiety by preparing for eventualities and try not to overdo the mental calisthenics of doing so. This is something I fail at depending on the day because trying to help manage my family members’ autistic meltdowns is enough to give anyone anxiety. The good days are the ones where I get a chance to talk to a friend, a moment of silence away from everyone, or a rare night of getting to sleep more than five hours without being woken.

As difficult as this is for my kids, and all of us, I know that they’re benefiting from some of these unexpected lessons of tolerance for each other and patience with deprivation. Even if their version of deprivation is missing out on playgrounds and museums. Still, it builds character to have to go without because it teaches them to appreciate what they had and to learn gratitude for what might come.

We’re all on our own learning curve as we try to beat the curve. Here’s my hope and wishes to you all that you’re able to find the humor and the wisdom in those small moments when you can.

Will the pandemic make us kinder people?

adhd, ASD, autism, COVID-19, Homeschooling, neurodiversity, parenting, special needs, special needs parenting, Uncategorized

The other day it hailed and the sky opened to a startling blue. My children and I watched in silence from a window. We spotted the mother hummingbird from our yard and her new chicks as they swarmed the feeder on the porch just as steam began rising off the streets after the sudden temperature change. We talked amongst ourselves about how glad we were that the family of raccoons in the neighborhood hadn’t found the hummingbird or her new family, how the streets held the warmth of the sun in the pavement and the hail pelting it melted so quickly that it released steam, and that the lack of cars and pedestrians were because of the quarantine.

How clever it was that the mama hummingbird picked the rhododendron with its fragile branches to nest in so that any predator would fall under their own weight in the pursuit. How hummingbirds can weigh less than a penny.

You see, self-quarantining isn’t a huge stretch from being a parent of kids with special needs, especially homeschooling one of them. We’re used to the otherness of our lives and feeling lonely at times.

People physically distanced themselves from me a long time ago. It was a source of pain for a while until I realized that it was the winnowing of friendship that naturally occurs in life. Like the change from single to married, not having kids to choosing to have them, and then the discovery of neurodivergent children and husband. Pardon the pun, but that is where our paths diverged.

It feels as if the rest of the world is discovering what my life is like first-hand and I’m sympathetic to the process of accepting that particular reality along with the cyclical isolation. It will take a while but you all can do it, I’m proof that you can. I’ve accepted the overwhelming noise of children along with the absence of company that is beyond my control at times. The crushing weight of responsibility of people relying on me at a level of need akin to a newborn but perpetually. It’s natural to be conflicted with intense love and the guilt over resentment when loneliness sets in.

It occurred to me that any other time a sudden hail storm, like the one we had just seen, would have elicited exclamations of surprise and frustration at the sudden icy downpour from those outside. Instead, we only heard birds complaining and the steady sound of the wind that followed. Sounds that reminded me of growing up isolated in the woods. Sounds that are typically foreign to a congested Portland neighborhood but have become commonplace in the last few weeks. At this moment in the past, I would have heard the passing conversations of joggers, dog walkers, and college students on their way to class. Yet physical distance keeps the joggers mostly solitary now and rarely spotted, the dog walkers avoid each other and don’t congregate at the corner any longer, and the college students are gone for the year and forever from Concordia University that shuttered.

It was then that I noticed how silent it was that we could hear the wings of the hummingbirds. A new sound that I mistook as machinery. So new to my ears. The surreal realization of everyone in the world feeling very alone isn’t lost on me. I’ve felt like I’ve been living on Mars for many years now.

My daughter wondered aloud if the rain was enough to wash us clean of our plague, “the germs”, and how many people were sick. She spotted a lone person walking down the street with a mask on.

“I wonder if they’re dying.”

I looked at her in alarm. My husband and I didn’t discuss the details of the pandemic in front of her and kept any discussion “concrete and discrete” (as is our saying) like most topics that might upset them. We described what a virus was, how it worked, how it spread (this one in particular), and that we were staying home to keep others and ourselves well. That our only protection was cleanliness and staying put.

Yet our children are clever and my daughter is empathic to a fault. She sees right through you and it terrified me more than the virus to think that she might have overheard something or could sense my thoughts. My son climbed up behind me and straddled my back like a human backpack.

“My heart is sad.”

I hugged him in an awkward backward embrace and wondered if he understood, any better than the rest of us, this “social distancing” that really was “physical distancing“. He held onto my back as I rolled over and he loosened his hold to stare into my eyes intensely. Never casual eye contact with either of them. A stereotype of autism that I’ve never quite understood. It’s not a lack of eye contact as much as unusually intense and oddly timed. I’ve been informed at moments to stop whatever I’m doing so I can “share eyeballs” with my son. That unique interpretation of eye contact seems to translate well to their interpretation of physical distancing as well.

This strange new expectation we have for our children of not just avoiding strangers but anyone who comes within six feet of them is inducing further anxiety in my already anxious kids. It’s become so difficult to avoid people in our neighborhood when the weather clears that we’ve stopped taking walks and stick to our postage stamp back yard only after several incidences of the kids screaming “space” and running up on the porch to evade a passerby who refuses to keep their distance from our yard. It’s like my son channels an armed member of the Lollipop Guild as he wields his foam sword to defend his sister and himself from germs growling, “SPACE!”

They were accustomed to hail driving everyone indoors so they both assumed that we would go out to play. I was reluctant to let them gather ice pellets and was thankful when their attention turned to playing a game instead. I didn’t have the energy to chase them around the yard after four sleepless nights of comforting them through their nightmares. My new sleep schedule is staying up till around 9:00 pm to ease my daughter’s anxiety and then being woken at 3:00 am by my son wanting reassurance and then waking at 6:00 am to do it all over again.

The change in routines for my kids and husband made for a rough couple of weeks. It never can be underestimated how devastating it is to people on the spectrum when their schedule is upended without notice. My usually super energetic son who bubbles with joy has taken to rolling into a ball and crying sporadically throughout the day. My resilient daughter who is studious and contemplative has reverted to old habits of insomnia and stimming. My husband has been working from home, hidden in the basement, and has been indoctrinated into what a typical day might look like with me homeschooling, writing, advocating and simultaneously juggling therapy and interventions for the kids. I asked him what he thought now of what our average day looks like and he summed it up with, “Exhausting.”

The kids wait for their dad to come up from the basement and take his turn with parenting. They hope we’ll let them go on a bike ride or play in the yard. I just wait for a moment to myself and a break from the noise. Their noise is mostly joyful but I can relate to their sensory issues when I hit a wall and can’t take another moment of the cacophony. The irony is that the only break I have from the racket and drudgery of cooking and cleaning is when I’m in my lymphatic compression suit for an hour at a time in the a.m. and p.m. but that’s of course when they choose to thunder overhead with a spontaneous dance party or scooters across the hardwood floor.

I’ve taken to sitting in my car to return phone calls and staying up late just to hear silence. Not all that unlike the days of them being nursing newborns. Much like those days, I hope that the world will improve with their generation and become a better place for their sakes.

For instance, air pollution has dropped with so many cars off the road as of late. People are taking more of an interest in gardening out of the fear of running out of food but it lessens our carbon footprint as well without burning fuel to drive to a store to fetch produce that was delivered in a truck. I wonder how many people have taken more of an interest in cooking their food as well since restaurants are largely shuttering. Sad truth but maybe we’ll all learn to be more self-sufficient in the challenging days ahead.

Even with all the frightening facts in the news, there are reminders of our capacity for love and compassion despite our circumstances and to me, it oddly restored my faith in humanity to see this. The husband serenading his wife in quarantine through her window while she was in lockdown in her care home. Crowds cheering from balconies and windows to health care workers as they return to the hospital once again. And, my kids favorite, the baby otters on the live cam of the Oregon Aquarium.

Evidence of life continuing and all of us doing our best to care for our children and stay safe and sane the best that we can however that looks. Soak up the cuddles, lower the bar and allow more screen time, try the messy science project they’ve always wanted to try, indulge the requests for games and endless puzzles. Remember that as hard as being cooped up is for all of us, this is a chance to get to know each other better and let the world slow down so that we can live to see it another day.

Don’t agree with me? That’s ok, listen to Samuel L. Jackdon instead.

https://www.google.com/amp/s/www.aljazeera.com/amp/news/2020/03/physical-distancing-social-distancing-200330143325112.html

https://www.independent.co.uk/environment/coronavirus-us-pollution-satellite-covid-19-outbreak-a9421446.html

https://www.npr.org/sections/coronavirus-live-updates/2020/03/27/822514756/fearing-shortages-people-are-planting-more-vegetable-gardens

https://www.eater.com/pop-culture/2020/3/26/21195591/restaurant-chefs-virtual-cooking-classes-instagram-live-tiktok-coronavirus-impact-covid-19

https://www.nydailynews.com/coronavirus/ny-coronavirus-alabama-husband-nursing-home-serenades-wife-20200321-sxxc4725yjfevcg4emc2afhcje-story.html

https://time.com/5807592/europeans-sing-coronavirus-healthcare-workers/

Sea Otter Live Camera

The validity of pain.

chronic pain, EDS, Ehlers Danlos, lymphedema, POTS, PTSD, Uncategorized

“You look well, I thought you said you were sick?”
“So when will you get better? How long does this last?”
“Chin up. Don’t let it get you down.”
“Maybe if you just exercised more…”

How do you explain to others what it means to have chronic pain?

That I have back up plans for my bad days when I can’t walk. That a smile on my face doesn’t equate a lack of pain in my body. That my clothing size isn’t indicative of my longevity. That my outer appearance has no bearing on my internal health.

I find myself trying to explain to others my situation looking for understanding or acceptance yet feeling as if I’m having to justify my diagnosis to them. It feels at times that I’m marked with labels that do little to solve or console the ache that doesn’t leave yet at least confirm for me that it’s not just my imagination.

EDS, PCOS, lymphedema, POTS, PTSD. I’m an abundant alphabet of theories confirmed and devoid of solutions. Like the remnants of an oil spill lapping up on a coastline. The damage might visibly dissipate but the water is never untouched again. The toxicity only settles down to the rocks and becomes part of the body of water despite all the good intentions and valiant attempts of those to save everyone from the contamination. Yet, in this case, the source was written into my DNA and there’s no escaping it or the pain. The true damage are the biting remarks and slights not my conditions.

I can smile, I can force myself to do activities, but it’s not as if a sign lights up above my head to warn others that I’m on the brink of tears or exhaustion with the effort. So, to the casual observer, I seem fine and it’s assumed that there’s nothing “wrong” with me. That I should be able-bodied if only I put my mind to it. As if to be anything but able-bodied is a character flaw and under my control. Then again, what exactly is “able-bodied” or “able”? Don’t we all have different abilities? These are not attributes or flaws merely aspects of ourselves.

There’s a designated disability parking space for our home. I see the irony to some that I accept the resources for being disabled yet take issue with the denotation yet I’m not prideful enough to be foolish as to turn down help that I need. I was relieved to have the help but humbled at the reality that I needed the help. I would be lying if I said it didn’t scare me that I need to rely on others for help with my children and that there are days where I’m in so much pain I can’t walk. No one plans for these things yet changes in health are part of life. What I hadn’t anticipated was the anger from others.

The random neighbor walking by, stopping and staring at my car, staring up at our house, and back again at my car shaking their head. Me spotting them from my desk, crying in shame and frustration, hurt that someone I thought was a friend was secretly judging me. When I saw them a week later they joked, “Hey, nice job scoring the parking spot.” With a chuckle and a smirk. Without a hint of sympathy. Only smug indignation of feeling justified in criticizing me. “We need the spot…I need the spot. Me and the kids.”
“Oh, yeah. Your husband mentioned they’re on “the spectrum”…” with a roll of his eyes.

I’d like to say I argued with him. Railed at him for his prejudice and insensitivity but I did not. I’ve tired of having the same debate continually with others and merely wish to not battle any longer. The fight has gone out of me as of late.

It feels unreasonable to expect others to understand or want to be informed of my conditions. Instead, I answer what is asked and try to be patient with the pain within and that which I receive from the carefree obliviousness of those that can’t relate. We all will face a health crisis some day of our own, or someone we love, and I hope we all remember that and treat others like myself with compassion.

A sense of freedom.

diversity, equal rights, equality, neurodiversity, politics, Uncategorized

Every now and again there’s an article, a book, that stays with you. Like a meal that stands out in your mind and though the flavor is gone the emotions it elicited remain. Like a scent, a song, the recalling of the idea brings back the response it conjured in you. Such was the pricking of my mind when I read Masha Green’s New Yorker article, “The Unimaginable Reality of American Concentration Camps”, from June 21, 2019.

I wouldn’t be doing it justice to regurgitate the content and extole my opinion when the article stands so well on its own. We’re existing in our own cognitive dissonance these days. A buffoon is at the helm, propped up by corporations and those that profit from having him dance from their strings. We’re caging children because many of us simply fear those that we deem as “other” and dread the loss of privileges that we rarely have earned. We cast him as a joke and it helps soften the reality of his monstrous actions.

My daughter asked me about ERA the other day after reading in one of her history books about the Women’s Movement. It was sweet, painful, and a moment of many layers like most that consist of teaching hard lessons to our children. We researched the Equal Rights Amendment together and I had to prove to her that I wasn’t mistaken, it hasn’t passed. It still has not been ratified. She asked, “If it’s not “ratified” does that mean that rats won’t pass it?” Yes, my sweet child, yes.

Whether you are female, differently abled, neurodivergent, LGBTQ, minority, or an immigrant; we still do not have equal rights to those that hold the majority of positions in power. Our voices undermined as shrill or petulant yet if we allow others to silence us we lose what precious foothold we possess of freedom. For so many of my forty odd years I’ve doubted myself, second guessed my importance, and remained silent while others told me who I was and what I could be. As hard as I try, I still have moments where that is true and I fight against the signs of this that I see in my children. Their otherness doesn’t lessen who they are yet there are those that would tell them that they are not deserving of the same rights as themselves. That their neurodivergence, being autistic, makes them less in their eyes.

I see the pain it causes them. This unspoken judgement of them. It’s when others stare as they melt down in a public place. It’s when people speak about them as if they’re not right in front of them. It’s when someone thoughtlessly comments on how “normal” they seem. It’s when their access to an education is cut off because they are expected to conform to an arbitrary norm. It’s the many slights that dig away at you and add up to a weight on your heart that you carry with you. I have my own that I carry. The judgement of being a child of poverty, a child of a felon, a child of repeated abuse and defilement. It is the cage that those place you in to feel powerful. The chipping away at your freedoms to contain you and lord over you their ability to decide your fate. Where does this leave us? Us, the adults, that must find a sense of peace in the midst of a past and a present that haunts us.

As trite as it sounds, simply to continue to fight and hope for something better. To not accept the fate that others wish for us and choose the one that we want. I look back at the article by Masha Green now and again, I follow her work and others who risk voicing their opinions, and I refuse to remain silent when others wish me to be so. I remind my children that we do not have equal rights but we were meant to in a just world and that we all have to continue to work for the world to be one.

I look at this photo. A twenty-something version of myself. I had been given a new lease on life. Free of an abusive relationship, a new job, a new place to live, the support of friends that loved me more than some that should have in my past. Full of hope, lightness, and a sense that things would be better for me. My friend, Emily, took the photo and gifted me something I rarely have felt in my life until then. That someone believed in me.

Now that I’m firmly in my forties and another birthday has passed, I ask myself if I will ever see a day where my children have the rights they deserve and live in a just world and I want for something more than that hope and ache for a guarantee instead.

I hate Thanksgiving.

family, Holidays

“I hate Thanksgiving…”

I thought I had muttered but as so often is the case, especially around my daughter, I had not. My eyes flicked to the rearview mirror and I met two large eyes staring back at me that were not my own. She looked uneasy. I flashed a bright smile. Her expression didn’t change. Oh, !#@& here it comes…

“Why do you hate it?”

My mind tumbled down the rabbit hole for a moment. Do I share the truth? Do I regale her with memories of family dinners past and the constant fear of abuse and familial meltdowns that erupted? How the taste of turkey reminded me of those moments yet I still choked it down to please others when sitting at a Thanksgiving meal? Do I try and sound hopeful and share that the first turkey dinner I really enjoyed on a Thanksgiving was one with complete strangers in a restaurant in my early thirties?

No, because a kid doesn’t need to hear any of that. I stuck to the academics.

“Because it’s a holiday celebrating the destruction of our ancestors and an excuse for advertisers to push their products while guilting people into visiting relatives they don’t like or feeling bad that they can’t see them that day.”

She nodded sagely and looked out the window solemnly, “Oh! Riiiiight,…like “Columbus Day”.”

I LOVE this kid…

“Do you think our other family feels that way?”

“Which other family?”

I could barely hear her voice,

“The ones that don’t want to meet us.”

My mouth went dry. I struggled to keep my voice even. “Those people don’t deserve to meet you. They’re broken and sad. It’s not your fault that they act that way.”

I internally patted myself on the back. My eyes glanced up and she was trying to reach as far as she could in her booster to hand me a tissue.

Our troubles are so often like cooked pasta left forgotten to congeal. It isn’t going to be fixed by removing just one piece. You have to decide if you’re ok with putting the effort into salvaging the meal or throwing the lot of it out.

My troubles as of late seem more like a dangerously bad gravy; smooth on the surface but full of jarring lumps and burnt on the bottom.

Everything about the holiday pissed me off. Mostly the inaccurate misrepresentation of history and the glorification of the genocide inflicted on Native Americans but, honestly, the obligation to pretend that you’re in a happy family with complete strangers ranked pretty close behind that.

Allow me to list my favorites to dislike: (In tribute to Letterman’s “Top Ten”.)

10. A parade that’s a huge advertisement for big box stores televised with the worst announcers that were needy for the spotlight between the morning news and their B-string slot on the sports casts that have no idea most people are watching them, if at all, on mute until the giant inflatable floats go by or the lip syncing musicians come on.

9. The parade announcers.

8. Putting your arm inside the turkey.

7. The pressure to cook that specific meal that you don’t like every time you’re at the grocery store. (No, I won’t cook a turkey! It’s called “chicken”, it’s easier to cook and it tastes better. The next time someone expects a cooked turkey from me I’m going to serve up a carved ham in the form of a cooked turkey wrapped in bacon.)

6. The constant reminders everywhere you go that it’s a time for “family” yet many of us would prefer, or need, to be with the one of our choosing or have no choice but to be apart from ours on that day.

5. The guilt trips. I don’t NEED to convince you I’m “thankful”! That should occur every day and doesn’t need to be forced onto people, especially children, in the form of a rainbow hand shaped paper turkey.

4. My kids have food allergies. Have you tried making vegan gluten free rolls? Enough said. It’s like a dusty, soggy rock of a lie in your mouth.

3. Televised sports. Suck it.

2. The expectation to host people that hate you the other 364 days a year that can’t bother to care about you for even one of the rest of them.

And, number one…

(drumroll please)…

The perpetuation of the myth that the “holiday” is a benign expression of thankfulness. If that were true, then please take the pilgrim hat out of the holiday and instead send notes of thanks and gratitude to each other.

Which is what I send to everyone and anyone reading this. Let’s be thankful for those we love and those that are able to be near us that love us as well. If not on the holiday, then on every other day because what a world it could be if we did. Gobble, gobble.

Harmony at Halloween: All color of buckets are welcome at our door!

adhd, ASD, atypical, autism, equal rights, equality, inclusion, neurodiversity, parenting, politics, special needs, special needs parenting

Harmony at Halloween: All color of buckets are welcome at our door!

Ever have one of those social media moments where you cringe and want to crawl into an ethernet hole? No? Then you’re not me.

I, with all good intentions and little forethought, shared an article on a social media site and asked for people’s opinions about kids using a blue bucket for trick-or-treating to signify that they are on the spectrum. Why did I do this? I was looking for other’s opinions and genuinely wanted an open discussion about the topic. What I didn’t anticipate, and should have, was a social media clash of politics and high emotions. Some of it was directed at me for even sharing the article but I honestly enjoyed the conversations and it opened my eyes to some perceptions that I hadn’t considered.

For those undoctrinated, there are different colored Halloween jack-o-lantern buckets to indicate if a kid has food allergies, teal buckets for instance, and a growing number of families use blue buckets for kids on the spectrum.

A few angry parents remarked that we might as well use different colored buckets for everything. They probably meant that flippantly but I don’t think that’s a bad idea. If we’re hoping for an inclusive, accepting world then a rainbow of colors in our candy buckets sounds like a fun idea to me. I’m all for people over sharing rather than being silenced for fear of ridicule or shamed into masking their true identity. The only masks we should wear are fun ones. (It’s Halloween after all, not a Republican rally.)

There were a few parents concerned about their kids being stigmatized by using a blue bucket as an invasion of their privacy. I can see that point of view as well; however, the more open I am about my family being neurodivergent the easier time we have in interactions and the more accepted my kids feel. I tell them every day how much love I them and how proud I am of them. To me, they really are super heros. Costumes or not.

Being open about neurodivergence gives others a chance to feel comfortable asking questions and it prepares them for some of my kids’ behavior and it shows that we’re willing to discuss autism with them. We’ve had many moments where we’ve been approached and asked questions and it allows for the conversation that a lot of us hope for as parents. It’s not comfortable all the time but I’d rather the discomfort than make my kids feel like I’m hiding their identity from the world. Autism isn’t soley their identity but it’s a big part of who they are because it affects them physiologically. 

The logical question, on the flip side of this, is do my kids mind me being open about their neurodiversity. It’s a valid question. When it comes to my writing, the rule is that I ask the kids before I post. I review what I’m going to share with them and allow them veto power on what gets posted or published. That includes anything I quote and any photos I share. It’s a hard rule to follow, I won’t lie. There are pics that I gush over and feel a pang of disappointment when they ask me not to share, but I also understand. It’s their image, their identity, and I have to respect their wishes when it comes to sharing.

Much like the developmental stages we’re nearing, my writing has evolved based on the comfort level of what my kids allow me to share. I know the day is coming that they want me to keep everything private and I’ll honor that. Besides, I want to hear what they want to share.

My vote on the color of your bucket, wear and share what you want and celebrate however you feel comfortable. I just know I’ll have four buckets for you when you come to the door: teal for allergies, silver for chocolate, blue for toys, and orange for what I won’t share with you at all and binge eat once the kids are asleep. Happy holiday!

When your kid is more woke than you.

adhd, ASD, atypical, autism, equal rights, equality, inclusion, neurodiversity, parenting, special needs parenting

“Mama?”

“Hmm?”

“Why is it ok for boys not to wear pants?”

I put my phone down and gave her my full attention, “What?”

“Why is it ok for boys not to wear pants?”

My mama-bear-full-red-alert alarm fired off in my brain, “Who was around you without pants on?”

She gave me a funny look and said, “Owen.”

My brain fired off an “all clear” and I relaxed, “Ah, well, yeah…Owen is not fond of wearing pants,” I saw him sit up a little taller but not look my way as a smile crept up on his face, “but we’ve talked about this and HE KNOWS that he’s supposed to wear clothes around you. Right, Owen?”

He giggled, grunted, and made loud car noises as he launched his teddy bear off his cardboard tower.

I smiled and turned back to Leonora, “Is someone else not wearing pants around you?”

She thought about with an expression like someone considering a deep, philosophical question and replied very solemnly, “No, not this week.”

I pulled a face at her and bit my tongue as she continued since she clearly had prepared a narrative on the subject and was putting great effort into getting her point across.

“Girls wear pants or stuff on their bottom,” I wondered what the other “stuff” might be referring to, “but boys can run around without pants on and everyone thinks it’s funny…it’s not fair.”

She was right. Huh, why the hell IS it funny to people but if a girl of her age were to do so people would be uncomfortable or outraged yet it’s still considered funny for boys or men to walk around without pants when they’re at home… Holy $#*!, my daughter is way more woke than me!

“That’s an excellent point. It’s not fair, is it?”

“No.”

I gave her a side hug and asked, “Are you wanting to run around without pants on?”

She pulled away and her eyes widened in shock, “NO.”

“Ok, ok, just curious but you’re right. If someone is being inappropriate and making you uncomfortable it’s ok to say something or get away from them. ESPECIALLY if they don’t have pants on – “

“MA-MaAAAA!”

“Ok, ok, I’m sorry. Just worry about you.”

She hugged me (the best way to shut someone up ever) and ran away.

I watched her as she ran out of the room and wondered to myself, why IS it ok for men to not wear pants around the house?

Just then Owen walked by chanting “butt” and I shook my head and groaned. He looked up at me and smiled with his eyes squeezed shut, his version of eye contact, and I kissed the top of his head. He laughed and ran back to his cardboard fortress.

She was right. Even though the discussions around gender, identity, self governance, and equality had changed and become more open as of late it doesn’t change the reality of there being tangible differences in the smallest nuances in our daily lives. Those subtleties of social norms that our kids pick up on and call out more readily than we do ourselves because they see them for what they are, nonsense. The double standards are so far reaching that they seep into the smallest of interactions to the largest of matters in our lives. In my children’s case, their health.

We struggled to get an accurate diagnosis for our daughter for six years. She’s eight. The crazier part? We only received that because doctors started to listen to me AFTER our five year old son was diagnosed when he was two. Leonora was five at the time. I had already been asking for help to support her for three years at that point. A particular low point was when a pediatrician met with us, seemingly listened, and silently handed me a note on the way out the door with a name of a counselor. When I reviewed my daughter’s paperwork, they had noted that I was an “anxious mother” and that she clearly didn’t show signs of autism.

Autistic women are discriminated against the moment they’re born. Not just because they’re female (check) or because of their race (check) but because all assessments and diagnostic tools are created for men and not women. (I’ll give you a moment to ponder or Google that.)

The bias in the medical and mental health fields overlook girls so often that the assessment and diagnostic tools have still yet to be updated or modified to truly be inclusive of women or girls. Which leaves parents, like myself, hanging with the proverbial question of, “So?…” Yet there’s no reply and only more questions.

We’re fortunate that we found an expert Psychologist and that our daughter now receives the support she needs yet autism is still studied and treated as a mental health issue which it is not. It’s not a disease or disorder to be cured but, in my opinion, a physiological difference that requires a different approach and sensitivity in most aspects of their lives. Just like anybody, my kids want to be accepted and treated equally. Yet, unlike parents of neurotypical kids, I feel as if I’m left with questions that the experts can’t reliably answer.

Will they ever find love and maintain a relationship?

Will my kids ever be able to live independently?

Will they be able to attend college and succeed in getting a degree?

Then again, all parents worry about these things in varying ways because deep down we’re all the same and want the same things. To have friends, to be loved, to be accepted.

Autism’s sex ratio, explained

Righting the gender imbalance in autism studies

https://sparkforautism.org/discover_article/are-girls-with-autism-hiding-in-plain-sight/

https://www.autism.org.uk/about/what-is/gender.aspx

https://link.springer.com/article/10.1007/s10803-016-2872-8

A badge or a burden: the trauma we carry

adhd, ASD, atypical, autism, Complex PTSD, Homeschooling, mental health, motherhood, neurodiversity, parenting, PTSD, special education, special needs, special needs parenting, trauma

My friend phoned me to tell me what I expected. Her mother had been placed in hospice only days before but I knew. We only called each other when it was too hard to write what we needed to say or we needed to hear each other’s voices. Her mom was gone.

I sat in silence and thought about her family and my own. Trying to imagine what my friend was feeling at that moment. Thinking of how many struggles she had endured in so little time. How the length of our friendship was colored by so many of those for us both. I began summarizing in my head all of those traumas in my own life and began with the one that my family thought was amusing and I found painful still. Our move to Oregon (but that’s a story for another time) and touched upon the one that truly shaped me from that day forward.

I’ve had PTSD since I was six. It began the moment I watched our family home burn to the ground. Frozen in place, listening to the sounds of my mother screaming and keening. I would like to say things improved from there but they didn’t. So I learned to expect another crisis around every corner and that good luck was for other people. It took years to unlearn this thinking, a diagnosis of Complex PTSD
, and the acceptance that we all have our sorrows and come 1through life wearing our setbacks as a badge or a burden.

The layers of trauma changed in variety over the years. The moments compressed into me like the striation marks in the earth. Ever changing, ever present, and unbidden. Once a source of shame and now simply marks on my body like the remnants of pregnancy or aging. Something I can acknowledge and feel a sense of achievement from or something I can hide and only deepen the pain brought on by seeing them in an unkind light.

Listening to those dark, ugly voices of criticism in my low moments can dtill happen but I’ve learned to question those voices and quiet them with kindness for myself. Those same voices that lurked throughout my childhood are now gone but the memory of them haunt me like tinny piped music. I can choose to escape them or confront them but I acknowledge that the hurt from those people marked me but hasn’t marred me.

Now, as a mother, I feel as if I have a new terrain of PTSD. The terrain of trauma sustained by my children. The bullying, the attacks, the judgement.

Accepting my children’s neurodivergence wasn’t difficult. Accepting the treatment they receive from others is something I have to fight on a daily basis at times and it can feel insurmountable. From strangers to doctors, to teachers to extended family, we’ve had a litany of interactions where we’ve had to navigate the misunderstandings around autism and tolerate or battle the misconceptions people have of autistic people.

Whether you’re neurotypical or neurodivergent, misunderstandings happen constantly but the difference is that I can process this and respond whereas my kids, by in large, cannot. The lag time in processing in combination with their trauma compounds into a snarl of frustration that results in simply being overwhelmed to the point that they shut down or melt down. Many of us can relate to this feeling but not to the extreme that they experience. Their experience is our version of being tongue-tied amplified by the thousands. Take that feeling and color it with trauma and they end up blaming themselves for not being able to keep up or join in a mundane conversation.

It was during one of these interactions recently that I had an epiphany. Because autistic or otherwise, trauma colors our filter of the world for better or worse and that filter never leaves us but can unexpectedly be a strength. For instance, and I’ll freely admit I’m biased, my kids are the most thoughtful and forgiving souls I’ve ever met. They will go out of their way to be kind to others and generous to a fault. Their struggles to find and keep friends haven’t hurt them but made them more empathetic towards others. Maybe a little too intensely at times, but all and all, to their betterment.

After three long years of trying to make public general education work for both of our kids we made the hard decision last year to place our son in a self-contained classroom and opt out of school completely for our daughter and it’s been the best decision we could have made for either of them. I had many doubts seeing that I knew little about special education three years ago and never intended to homeschool and was always an advocate for public schools. Especially the strong belief of staying in your neighborhood school yet when that school doesn’t want your child to attend, and makes it clear that they are not willing to accommodate them, you’re not left with many choices.

I feared that she would be socially isolated, bored, or – worse – regress if we homeschooled. To my relief, none of that was true. Except for she admittedly became lonely until we found independent studies and activities for her to join with like-minded kids. (It’s no easy feat to find other eight year olds who want to read history books and knit. We found the first and the second request was met by her making friends with the “Chicks with Sticks” club at her grandmother’s assisted living facility.)

We allowed her to unschool for a year and then gradually added academic structure back into her life. It’s made a world of difference not only for her but our entire family. It reinstilled her confidence and renewed my hope in her being able to attain an education and a sense of fulfillment. Her trauma can be a source of learning and not an impediment to her growth.

For me, the nightmares don’t go away. I’ll never feel comfortable sitting with my back to a room full of strangers. I’ll never stop worrying that the horrors that befell me might befall my own children. Yet I know that they can not only survive but thrive, not in spite of, but possibly because of those challenges and have a deeper sense of kindness to show from their scars.

https://www.ptsd.va.gov/professional/treat/essentials/complex_ptsd.asp