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”

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.

Sea Otter Live Camera

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.

Shadows and the sweet

autism, chronic pain, death, Ehlers Danlos, motherhood, parenting, special needs, special needs parenting, Uncategorized

I was numb. The fear of what was possible and unknown was twisting inside of me and clamping down on me.

It was humid, raining, and I felt like jumping out of my skin and flying over all of the cars ahead of me and fast enough to leave everything I had heard behind me. Traffic crawled along but I simply just stared at the tail lights ahead of me with resignation and accelerated with the mass of vehicles and decelerated without much notice. I had just gotten off the phone with my husband and the doctor appointment was behind me but so much lay ahead of me.

For the last few years I suspected that I had Ehlers Danlos (I’ll wait while you Google that) but getting a diagnosis is a struggle not all that unlike the process we went through for our children being diagnosed with autism. I didn’t worry as much as wonder since I had so many other concerns that absorbed my attention (see “children”). Yet as the stress of life built up over these past two years and then sped up to a frenzy in the last few months something shifted. I was in pain. Not just with certain activities or phases. It was there when I tried to sleep. It was waiting for me when I woke.

Nothing was comfortable anymore. Sitting, laying down, nothing gave me relief from aching. I didn’t want to take pills to stave it off and be living in a fog. A dangerous proposition if you’re meant to be running after children but I found I couldn’t keep up. Not just from exhaustion but physically my body wasn’t responding when I needed it to.

I stared at the Hyundai in front of me. The man was gesturing like an enraged mime at the chaos around him. As if silent reasoning was possible with this quagmire of metal boxes. The car across from him held up their middle finger. It was an elderly lady with a multitude of bumper stickers. It shook me out of my haze for a moment and I laughed. It was that last defense that fell away across the surface of my bubble and it burst. My laughter turned to tears and I wept in the privacy of my car as I helplessly sat in traffic.

Because this was my life now. Helpless to the current of traffic as much as I was to the outcome of further testing. It had been written in my DNA and nothing I’d done or could do would change the facts. I simply had to face the pragmatic logistics of booking the appointments for further testing and wait. Waiting was more of a feeling than an action in my opinion and I found it most infuriating when it was to be done in unpleasant conditions (see “adolescence”).

I didn’t want to share my news with the kids until I knew everything with certainty yet they both had a knack for eavesdropping and were keenly sneaky when there was something behind withheld from them. As careful as I thought I was being, making phone calls when they weren’t around me. They noticed that I was in pain, they were confused as to why our walks together had become more rare, and they wanted to know why they couldn’t bounce on my lap.

It was a few days later, early in the evening but I struggled to keep my eyes open so I waited until I had the kids to bed and then went to bed myself. Not long after I heard the soft step of Leonora coming down the hall. She looked fearful and concerned. I pulled the covers back for her and held her. Her face was upturned to the ceiling as she laid her head on my chest but I could tell she was crying.

“I can’t stop thinking about death.”

She sighed and exhaled so deeply I could tell that it was a huge relief for her to speak the words. I squeezed her tight and stroked her hair. These are the moments that parents dread. It’s like seeing your child falling in slow motion yet this is our emotional well-being that is in free fall and you must catch them or risk permanent injury.

“There’s nothing to fear. Death is part of life and we can’t change that… It’s a surprise awaiting all of us, the last great adventure, and to fear it is natural but it’s pointless to worry. Every time we cut a flower we’re watching birth, life, and death all in one vase. Life is beautiful but everything ends, the good and the bad.”

She breathed slowly and calmed. I could feel her becoming heavier as she relaxed and thought about my words. I wondered how she was interpreting them. It occurred to me that she loves my stories and that maybe I could explain it with one.

“Did I ever tell you about Brandon?” She shook her head and I continued, “He was a classmate of mine. We were on school break and during the holiday he had an accident and died suddenly.”

I let my words sink in for a moment before resuming. I left out that it was from riding his bike into the street. Or that his mother and brother had to witness the event. All of those details were too painful to recount and would only heighten her anxiety.

All of us in his class and in the school were in shock when we heard the news and then had to go back to school the next day and behave normally. It was surreally horrific. The bus ride to school that day was silent. We filed into class and sat at our seats robotically, waiting for someone to tell us how to behave, waiting for an adult to make all of this feel ok again.

Mr. West, Richard West (“Dick” for short and he had no shame in informing people) was my fifth grade teacher and the first truly kind man I had ever met. He showed me that men could be trusted and were redeemable. I was his favorite student. Me?! The forgotten, bullied, silent girl who the teachers pushed aside or ridiculed right along with the bullies in my clothes that were 20 years out of date and my hairdo that belonged in the journals of emotional torture all the world over. Mr. West was one of the shining lights in my childhood.

“I had a teacher, Mr. West, he was the kindest man I’ve ever met. He got up in front of the class that next day, with tears in his eyes, and told us this: “Brandon will be missed. He was a good boy and all of us are in shock at what happened and grieving. Death is part of life. Brandon will always be with us as long as you remember him. That’s where we go when we pass on. We always live on in people’s memories of us. To be truly loved is to be remembered.”

And I agree with him, when we die we don’t disappear we simply continue on in the memories of those we’ve loved and those who have loved us. Like Mary Poppins said, “Nothing’s gone forever, Only out of place.” And I believe that too. I’ll always love you, I’ll always be with you, and I’ll always be in your memories.”

Then I told her the lie that all parents tell their children. It might be a different translation but the sentiment is the same, “But that’s nothing for you to worry about because I intend to be around for a long time.”

She hugged me and we laid there for awhile simply thinking our own thoughts. Hers unspoken and mine ruminating over the uncertainties of life and the retrospective judgment of our actions, particularly parents. Whether it’s us raking ourselves over the coals or the hurt expression we fear seeing on our child’s face and knowing we inspired its appearance.

Eventually I offered to help her back to her bed and laid down next to her, singing and stroking her hair, until she fell asleep. As I left the room, I looked over at Owen’s sleeping form and saw his feet ajar from the blanket and his head dramatically craned towards his stuffed owl. I smiled, tucked him back in, and choked on a laugh as he harrumphed in his sleep and folded his bottom into the air.

I can only hope that things turn out right and that if they don’t, my children find me where the lost things go.

What the &$#@ were they thinking?

autism, mental health, parenting

Out of all the mysteries in life there are four that never cease to fascinate me:  the human brain, what happens after death, the purpose of life, and all the people that I wonder, “What the &$#@ were they thinking?”

It’s a whole list of people that extend from childhood friends I regret losing touch with, exes that I still don’t understand, politicians and celebrities that detonated their lives, people that don’t know how to navigate a busy sidewalk, and the creeps that take up two parking spaces.

These last few years have been tumultuous. This is unequivocally an understatement. Many moments this little world of mine has shifted on the axis and I can’t help but imagine a large hand tipping our globe off its stand and letting us roll under the couch. I’ve had hard times in life where I wasn’t sure how I was going to get through yet I did. Not without help, or humbling myself to be vulnerable, but I managed.

That’s what we all are supposed to do, right? Manage, keep going, hope it gets better. What does better look like though? Is that a way to live? What example am I setting for my kids if I’m perpetually in a state of hoping the next day will be better and simultaneously acknowledging that the present is unpleasant?

Here’s what I’m hoping better looks like. A school that my kids can safely attend. One that is accepting of them and cares about them that doesn’t cost $40,000 per child a year. Finding other families with kids on the spectrum that get it and get us. A house that isn’t falling apart. (I love you house but, c’mon, what the &$#@?)

Mostly, I wish I didn’t go to bed at night worrying about what might happen to my kids if something happens to me. I have no extended family that can support them. Friends that might but I hesitate to impose upon them such a promise. Any guardian would have to take on full time advocacy and coordination of care. I guess what I hope for, what I wish “better” looked like, was a world where I felt my children would be safe without me. It makes me wonder as I look at myself, “What the &$#@ was I thinking?”

Having kids is a cry of hope that the world will continually try to be better and do better. Let’s all hope that this is true despite our current circumstances in my little world and all of ours.

Then a moment came recently that reminded me again of how poignant an event can be with clashing emotions juxtaposed with bursts of clarity that leave you feeling like a small blade of grass weathering a storm, a rainbow, and the sun all at once. One of my dearest, most intimate friends, lost her spouse to suicide. I’ve never seen strength like hers. She weathered so much in such a small amount of time but it took my breath away to watch her take each of her children up to say goodbye to her deceased husband.

We manage and we keep going because there’s always more to discover, more mysteries to ponder, and more beauty to be found. She embodies this despite her doubts. She doesn’t see how strong she is but I see it every time she rallies against her grief yet still notices that her child needs their shoe tied, a nose wiped, a cuddle. Even as the darkest moments befell her and those sweet children they continued on, they found reasons to laugh, they cried, and they keep going. Storms pass, not everything can be understood, and you will always have people in your life that make you wonder, “What the &$#@ were they thinking?”

I don’t know where strength like that comes from. I don’t know why such awful things happen to such wondrous people or why mental health is still not considered part of our overall health. There are mysteries that bring us to tears and those that leave us in awe and there is beauty in both.

Learning the kaleidoscope.

adhd, ASD, atypical, autism, neurodiversity, parenting, special needs, special needs parenting

Remember when you were little and you first looked through the kaleidoscope? You might have wondered if you were doing it right. Maybe you didn’t see the appeal right off the bat and played with it for a moment only to discard it and realize later that you had the source of endless magical awe and delight within that rinky-dink cardboard tube of plastic colored chips and a mirror.

I still have moments of realizing I’m looking at things the wrong way round. That I’ve been missing out on joyous whimsy just by looking through the proverbial kaleidoscope in my grasp. The view of the world my children happen to possess. So often it can be maddening and seem impossible to slow down enough to see things from their perspective yet when I force myself to do so I rarely regret the decision.

It was one of those moments that I realized that staring at traffic isn’t half bad.

It was one of the last times we ever attempted to do a family outing together as a group. We’ve since realized that splitting up into separate groups is not only easier but seems to accommodate everyone so that the outing is enjoyable as opposed to surviving an undertaking. In truth, there’s only so many simultaneous meltdowns I can handle at once and I’m outnumbered. We all have to take turns being crazy around here and it’s never my turn.

It was at such a family outing that Owen had melted down and I offered to leave the museum exhibit so that my respective nerds could continue to play with the robots. We sat in silence next to each other on the bench. I offered what I could to help calm Owen down but he kept shifting down the bench away from me and I was afraid he would bolt into the busy crowd just down the stairs. Always a fear with someone on the spectrum who has a tendency to wander off. (And by wander I mean sprint headlong with no plan as to where he’s going and refuses to respond to his name or warnings of his imminent danger, see “elopement”.)

He scooted once more as a woman stepped sideways as she read the display plaques for an exhibit mounted across the walkway from us. The board was mostly translucent with images sporadically mounted but the view behind the display only partially interrupted. Owen had no interest in the logging history of Oregon or the earthquakes that have come and gone but the traffic of I-5 and the bridges we could see from our bench were as compelling as that exhibit was to the woman. Every step she took obscured his view. He was silently jockeying for position to view his traffic like a Mr. Bean episode.

I leaned down, pulled his headphones away, and quietly explained to him he could sit on my lap to see better or we could walk over to the window. He thrashed in confusion and frustration for a moment. I took his hand and walked him over and let him rest his head against the cool glass wall. He sighed. His shoulders relaxed. I played bodyguard and prevented people from pushing through or against him. He held my hand and started shouting out the trucks and sights that caught his eye. It’s his way of including me and I joined in to show I appreciated it but something wondrous happened. I started pointing ones out to him.

He spotted the colors and types of vehicles and I would point out the funny dog sticking its head out of the back of the car. The RV with the mismatched doors. The funny sign on the beer truck. The flow of the traffic was soothing. It became not all that unlike staring at waves.

He leaned against my leg and I stroked his hair. I knelt down next to him and he hugged me. In a small, weary voice, “I want to go home.”

We waited a few more minutes for his father and sister, loaded up, and headed out. It was the last time I took him to OMSI. I was looking through the wrong end of the kaleidoscope. He doesn’t want the loud, new, crowded exhibits or the cool play structures if it means dealing with crowds. He wants space, quiet, and room to explore on his own.

It’s difficult to find things for our family to do as a group so I’ve stopped trying, for now. I’m human though, it’s disappointing and frustrating. There’s moments where I think of something I’ve been wanting and waiting to do with them, show them, experience with them only to remember yet again that it’ll be too painful or overwhelming for them with their sensory issues. I guess it’s no different than a neurotypical parent disagreeing with their NT child over an interest. You like what you like.

I’ve learned to do outings with my kids one-on-one. If I let them come up with the ideas we all have a better time and the view can be surprisingly magical. So for my daughter it’s train rides, theatres, museums, parks when they’re not crowded, and quiet grown up restaurants. For Owen? It’s anything fast and sparsely populated whether he’s riding it or watching it from afar. I’m grateful they both like riding the train, amusement rides, but mostly that they share with me what they see.


adhd, ASD, atypical, autism, neurodiversity, parenting, special needs, special needs parenting

Oh Portland, you silly worrywart of a city. Two inches of snow of unexpected snow, at best, and the whole world shuts down. I don’t mind. I love the snow and become as giddy as the kids as I await them to fling back the curtains and cry, “SNOW!”

We drag our one sled down to the neighborhood park for the “big hill”. This is a big deal for many reasons. Namely, it means taking on the complicated social skills of other children in the frenetic manic of snow. Not an easy fete for kids on the spectrum at any moment much less in the face of the delirium brought on by rare and wondrous precipitation. In my head, I call it snowgasming.

The first of many is the “sticking together” and “not running off” rule. This equated to them chasing each other down the hill as they took turns pushing each other on the sled.

I loved watching Owen run down the hill at the end of one of the rough descents to rescue “‘sista!”, ala-Parenthood (the movie), from the neighborhood bullies.

She didn’t need it though. She simply stood up and stared at them innocently. They looked up at me and I gave them “the look”. Ckenched snowballs were dropped and they walked away in a huff.

Owen held up a snowball and I hollered, “Rule #3!”

He yelled back, “I being kind!!!”

He scowled, dropped it, and growled at them. When they laughed in response he looked at me with wounded pride.

I tried to reassure him but it wasn’t enough. The boys’ parents were busy talking to each other and refused to make eye contact. I wasn’t going to let this ruin our day.

The bullies approached us again moments later, the parents didn’t intervene, and I calmly walked towards them to block their approach towards my kids and said in a low voice, “Get away from us.”

They muttered to each other and dropped the snowballs.

I looked over at Owen and he was staring at the ground smiling.

Leonora asked on the way home, “Why are some kids mean to me?”

I was honest, “It’s not you. Some people choose to be unkind because they don’t know any better, because they want to, or because they’re unhappy and want others to feel as badly.”

She smiled and asked, “Can you tell me a funny story?”

Her shorthand for changing the subject and asking me to make her laugh. It’s her way of coping when something upsets her. We bond over funny stories. Humor saves us all. That and remembering how magical snow can be for us all.

Shadows and votes that go bump in the dark.

adhd, ASD, autism, equal rights, equality, human rights, politics, special needs, special needs parenting, voting rights

“I can’t, mama…I just can’t.”

It was the fourth night in a row that she was having nightmares. She couldn’t bring herself to discuss what they were about but my patience was wearing thin between waking with her brother at 1 a.m. and then her at 3 a.m. then him at 3:15 a.m…. You get the idea.

“Please, sweetheart. You can tell me. You can tell me anything. I’m not going to laugh or get mad. I just want to help.”

She curled her body tightly like a shell and burrowed her head into me. I marveled at how flexible she is and remembered that I once was that pliable. Nothing about me feels the same anymore. The child I was is such a distant memory yet so vivid. It was as if I was merely visiting the body of that child and she was my host. I wasn’t allowed to be a child for very long. With both children, I try to make sure that they don’t feel rushed to be older or attain milestones until they’re ready. Much to my own downfall at times now that we’re returning to co sleeping yet again.

“Maybe in the daytime. When the light is out…” I desisted in pushing for an explanation and realized that it was pointless. We both were exhausted and, whether she knew the cause of her nightmare or not, we were not going to find a solution while struggling to stay awake.

“Ok,” I kissed her head and combed her hair with my fingers trying to detangle the worst of her sleep steamed curls as best I could, “In the daylight. You’re right.”

She probably was having the same nightmares again. Reliving the past. Reliving the monstrous episodes I couldn’t save her from. The hidden dangers that every parent doesn’t want to face. From the small indignities my kids face when people stare at them in the midst of a meltdown to the offensive remarks from educators about them and to them. Then I think of the larger fears and my chest tightens. The abuse she lived through at the hands of others under the guise of “typical” kid behavior. I think about the kids living through such atrocities yet magnified with the brutality of our government inflicting it on them daily as they cage them.

I thought once again of the many families ripped from their children at the border. Of those seeking asylum only to face greater dangers than those they escaped. It makes me sick that we’re expected to continue living our lives in acquiescence to a dictator that risks our safety and liberty with every passing day. What world are we leaving for our children? Who am I to think that my voice or vote matters? Yet I keep trying.

I woke to a knee in the middle of my shoulder blades and resisted the urge to shove whoever was doing so from my body. The sheets were pinned in around me as I pulled loose and rolled out of my bed as silently as possible. It felt like a special martial arts move but I’m sure it looked more like an SNL skit.

My phone flashed red then purple so I knew I had texts and emails from known contacts waiting for me. It wasn’t reassuring. I knew what they most likely were regarding and that no matter how well I explained my point of view I wasn’t going to change their opinion. Normally I would walk away from a futile debate such as this but when it’s regarding your kids you don’t have a choice. More importantly, it’s a fight you can’t turn from. A reminder pinged for me to vote. I nodded to myself and hit “snooze” so it would remind me after breakfast.

There’s some salient truths to me that have become more evident because of my circumstances as a parent but also with the political quagmire we’re living through.

Everyone needs to vote. Each vote needs to count. Everyone deserves equal rights. There is no compromise over these three beliefs.

I mused to myself what might be if the ballots in Oregon didn’t go our way. For the millionth time I worried over our kids losing their services. Their rights being limited yet again. Our insurance premium going sky high, yet again, with no explanation and the discrimination obvious with every denial of service or therapy.

The old floorboards creaked as I tried to sneak to the bathroom and back. The morning temp had suddenly taken on the chill of winter. I welcomed it and yet my body felt so much older this year. I rolled my neck and listened to the internal sound of a cheap tourist rain stick I once was gifted as a kid. It sounded like my vertebrae were tumbling down inside me.

From the dark I heard a giggle and the motion sensor light went off above and behind my head in the hallway as the distinctive pounding footsteps of Owen rang out. He sped past me and threw himself headlong into the bed alongside his sister. I now had a ten inch span of space to try and lay down in if I wanted to attempt to sleep once again. It was almost four in the morning. I sighed, climbed in with my back to them, and pushed back slowly until their little bodies accommodated me. They giggled like it was a game.

Owen popped up like a prairie dog, “OOO! I be right back!”

Our bodies were jarred in every direction as he exploded from the bed and ran into the front room. He returned just as quickly with his thundering little feet. Suddenly the room was lit with the light of his iPad and filled with the sounds of “Big Block Singsong”.

Leonora rolled over and groaned in a whimper. I shifted my body to lay on the opposite side of her so she could sleep. Owen snuggled closer to me and happily held the tablet to share with me.

“Owen, turn it down… please.”

“Ok, ok,… th’orry.”

“It’s ok, baby…. Kindness with each other. Sister hasn’t slept well. Let’s be really quiet.”

“Ooooo…okay…okay….LOOK!! I found favorite!”

He excitedly, and with good intentions, thoughtfully shoved the iPad into my face with one of my few favorite episodes from the show playing. He meant it to be kind but managed to bloody my lip instead.

So many interactions are like this at times. How do I explain? Should I explain? Lately I don’t try to explain anymore unless I have to. A bit of the fight has gone out of me. There’s too many battles in any given day that are physically near me and emotionally around me. Battling schools, battling bullies, battling attitudes. It’s too much sometimes.

I dabbed my lip with some coconut oil as I made their breakfast. The scab would last for a bit. It meant another week of dodging people. It’s too hard to explain my injuries at times. They’re not as frequent as they used to be. How do you explain that your kid hurts you? If you try, the unsolicited advice is overwhelming, hurtful for the most part, and the worst reaction is the incredulity. The disbelief that this toddler is physically abusing you. It’s one of those topics about autism most parents are reluctant to admit or discuss. It’s as if you’re admitting that you’re a failure as a parent.

Owen climbed on my lap later and touched my lip, “OOO, you got an owie!”

“I know. Do you remember how this happened?”

He didn’t respond. I waited for him to look at me. He didn’t, “No.”

“You hit me with the iPad. It was an accident though, I know. Do you remember?”

He leaned against me and grunted with frustration, “YES!”
He pushed away from me in a huff and ran into the other room.
I gave him a minute and followed after him. As I approached his sister’s closet, I could see his bare feet sticking out from underneath her dresses. I smiled and pushed the dresses apart gently, “Hi, buddy.”

His little face smiled up at me and then quickly scrunched up as he covered his face, “No.”

“I’m here when you went to talk, ok? I’ll sit right over here and wait.”

I touched his cheek and sat on the end of the bed.
He scooted towards me without opening his eyes and crawled up on the bed next to me. I began to rub his back and he relaxed against me.

“I know you didn’t mean to hurt me.”

He rolled over and hugged me around my head in his octopus style. I began to cry and he laughed, “No do, mama!”

We both laughed and I wiped my tears away, “I’m just so happy when you hug me.”

He laughed and agreed that I was fortunate in his magnanimous way, “Yeah.”

Leonora looked concerned as I came back into the room, “It’s ok, honey.”

She hugged me tightly, in a whisper, “You ok, mama?”

“Yeah. Mama is fine. Owen is ok too.”

She kept hugging me as we swayed slightly, “Did he mess with my clothes?”

I laughed and with a hint of mischief theatrically mocked, “NO, no way, just the ones he wiped his face on.”

Her eyes were wide as I smiled into them. She growled like a cat and went running in to check her dresses. Laughing, knowing that I was kidding, but checking nonetheless.

I checked my phone and saw that our Governor had won the race and we once again had Kate Brown. I sighed in relief and read over the ballot results once again. I made a silent wish that the rest of the country fair as well and hoped against hope that our country will begin to behave with decency towards each other once again. An article popped up about the children being held in detention centers. History repeating itself.

It wasn’t intended to be aloud but I found myself announcing, “How could anyone deny kids their freedom? How could anyone treat people this way?”

My husband looked at me with sadness, “They don’t think kids deserve any rights.”

I scoffed and shook my head, “No, they don’t think ANY of us deserve equal rights.”

I made the mistake of opening social media only to discover old friends and extended family battling each other over semantics. I’m just happy that they voted and said a wish for all of us that we see a better world for ourselves and our kids.