parenting

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

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

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

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.

Snowgasm

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.

The right to be safe.

ASD, autism, equal rights, equality, freedom of speech, mental health, motherhood, neurodiversity, parenting, special needs, special needs parenting, Times Up

The article below was written over a year ago. I would like to say things have improved in the world but the most I can say is that things have improved in my daughter’s world.

She spoke up to us, not for the first time, about being bullied and attacked at school so we’re keeping her at home. Sometimes what’s best for our kids isn’t the easiest option but doing what’s right rarely is the smoothest route in life. I hope my kids see monumental changes in their lifetime of better mental healthcare, equal rights created and protected, and an end to sexual violence.

———————————————–

“Mama, why am I so different?”

For some reason I wasn’t expecting this question, not yet, not from my six year old. How can I explain to her and convince her of what I see and believe about her when everyone around her finds fault with her for those same reasons? She speaks softly and melodically. They tell her to speak up. She is achingly vulnerable without any guile and it terrifies me every day that she’ll be hurt by someone. They think it’s wonderful that she’s compliant to authority.

You see, she’s every teacher’s dream. A quiet kid who listens to directions and does everything she can to please them and doesn’t question authority. Yet she’s also the kid that gets forgotten, mistreated, fears speaking out, bullied, misunderstood, and is bewildered by the malice of others.

She “can’t find the words” and hits herself, “I’m a bad girl. I can’t get it right.”

She cries easily. Her feelings are often hurt. She feels so intensely the emotions of others around her that her stomach pains her with anxiety. This is autism in girls. This is what PTSD looks like in kids who have been sexually abused.

I love my daughter and accept everything about her but that doesn’t mean I love her autism, or my son’s, or my husband’s. Watching someone you love struggle to navigate the world is never a pleasant experience when it ends in tears or explosive tantrums. There are days where I feel like an incompetent ringmaster running from lions. Please hold my hat.

My least favorite moment recently was when a therapist asked, in front of my very verbal daughter with sensitive hearing, “How did you explain to her she was autistic?”

Sometimes I wish I could pause the world for my children so I could ream someone without them hearing my obscenities. I managed to bite on the inside of my cheek and ask, “Good question, she can hear you so why don’t you ask her?”

Nora smiled good-naturedly, waiting patiently, as the woman blanched in embarrassment. We continued the appointment and I suffered through yet another barrage of convince-us-your-daughter-is-autistic. It’s a great game, it only costs hundreds of dollars an hour, no one wins, and it always ends with, “Oh, yeah, she is…”

Diagnosis isn’t a one shot deal. It’s a process where you try to convince people of what you’ve observed and they test your ability to stay calm as you struggle to understand what the !$#% is going on with your kid. We’re at the tail end now and facing more therapy as we try to grasp at what we can do to make her life easier.

Accepting your children’s autism has little to do with yourself and more to do with what choices you make for them. Constantly debating when to get out of their way and when to push, when to go mama bear on their behalf, and when to let them struggle. I’ve made mistakes. I’ll make more mistakes. I can only hope my kids know how much I love them. Even if I’m the mom that says !$#% a lot.

“Mama, why am I so different?”

I bit back tears, hugged her, and looked her in the eye, “Because you’re wonderful.”

I took a deep breath for the next part, “You know how Owen and Papa think differently than others?”

She nodded and looked down at her lap. I made a mental note to myself as I noticed she was picking at her hands again and the skin on her lips. I would need to tell the doctor. I took her chin gently and kissed her cheek.

“You think differently too and that’s a good thing.”

——————-

It’s been a year since that moment. We’ve since found a Psychologist and clinic that specialize in helping girls on the spectrum and supporting them with processing trauma. Our neighborhood school refused to acknowledge any of the medical diagnoses or recommendations so now we’re on a new adventure of finding what works for our kids. The road is bumpy but the journey is never boring.