Uncategorized

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.

Welcome to Poverty: COVID era skills

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

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

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

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

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

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

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

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

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 Cabin fever has been replaced by “rat in a cage” frustration.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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Will the pandemic make us kinder people?

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

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

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

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

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

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

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

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

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

“I wonder if they’re dying.”

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

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

“My heart is sad.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sea Otter Live Camera

The validity of pain.

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

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

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

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

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

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

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

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

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

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

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

A sense of freedom.

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

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

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

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

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

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

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

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

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

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.

A label saved us.

ASD, autism, equality, motherhood, neurodiversity, parenting, special needs, Uncategorized

After a lifetime of fighting labels I’ve come full circle and now accept them daily without any hesitation because doing so means giving my kids access to services they wouldn’t have otherwise. I’ve fought hard for the few resources we receive despite the stereotype that kids with special needs get “lots of freebies”. (No, actually they don’t, Janice. Screw you and your spin class too.)

It also means being labeled myself in the process. “Mother of a child with special needs”, doesn’t really roll of the tongue but is far less hurtful than hearing others whisper as you pass, “She’s that mom with that kid in special ed.”

A friend of mine who is a mom to a kid with special needs (see how wordy that is?), said to me, “I feel like not having a diagnosis is one of the worst feelings.”

Yes, I knew immediately what she meant. That awareness that there are issues but not being able to name them. Knowing that your child needs help but not being able to ask for it because you’re not even sure what support they need to be able to get along with other kids because you’re not even sure what your kid is experiencing. You’re shut out when they’re nonverbal and left out in the cold once they can speak and have emotional meltdowns where they can’t explain to you what their world is like. It’s that feeling of struggling to speak to someone in another language. You’re trying to communicate what you need and relieved when they finally understand. Even if they can’t, or won’t, help you. That’s what it’s like being a parent of a kid with special needs. Alone and marginalized.

These past seven years have been many moments of feeling like a tourist struggling to understand a map in a foreign language. Of knowing the reality of what I saw my children experiencing yet not being believed. Minimized, dismissed, marginalized, ridiculed for speaking out. Told by professionals that I need counseling while my child ripped the doctor’s office apart and crumpled into tears, stimming, inconsolable only until they calmed themselves by rubbing their fingers together rhythmically. The doctor left the room and a nurse returned asking us to reschedule. They wouldn’t look at us or speak to us on the way out. The waiting room full of people stared and Owen grasped on to me to avoid their eyes. Nora calls it “the mean faces moment”. It’s the same moment we experience at school performances, restaurants, buses,…we’ve gotten used to consoling them and rushing them out to head off the impending meltdown all while shielding them from the prying eye contact of strangers. It’s as if our kid is allergic to direct stares and we’re rushing him out of the glare from others.

This month, after five years of being told I was imagining things, and even being told so after my son and husband were diagnosed, came the moment where someone listened. A doctor finally diagnosed our daughter. This doctor, she gave me the gift of clarity, my daughter the chance to be understood, our family the resources we need to move forward in supporting her, and me a light amidst the darkness – literally.

The day I met our daughter’s new doctor I was a jumble of nerves. I was prepared with my stack of folders, with all of my notes and lists to fully explain my daughter to her and defend my observations. I did all of this because I’ve learned the hard way. Every teacher, therapist, pediatrician, counselor, doctor of any type, and so-called experts have tried to talk me out of believing in what I knew to be true. My daughter was struggling. That morning I drove sweaty palmed and jittering in my seat high on too much caffeine to make up for a sleepless night of rehearsing questions in my head like I was preparing for a job interview.

The drive was plugged into my GPS even though I was pretty certain as to where the office was. Even with traffic, I arrived fifteen minutes early and patted myself on the back while I searched for a restroom. As luck would have it again, there was one just outside the entrance to the doctor’s office within the building and I dashed in. As the exterior door closed, I happened to catch out of the corner of my eye that they had a motion light much like the one we have at home in our basement. I passed through another door into where the stalls were located and went about my business. As my cheeks hit the paper liner a not-so-funny thing happened. The lights went out. Someone must have just left right before I came in and the light didn’t trigger for me but instead, went out.

My first thought was that someone was playing a joke but then I really panicked and my PTSD kicked in.

What if someone was attacking me?

What if the electricity was out in this windowless building? What if I can’t get out?

How long am I going to be sitting here waiting for someone to come in to use this bathroom out of this huge office park?

My hands began to shake and I quickly tried to find my phone in my purse. My phone fell out of my hands and went rolling across the floor. I began to cry. I was trapped in a bathroom coffin just waiting for someone to open the door to trigger the light or rescue me. At least my pants were up.

Then I noticed the stack of folders I had brought. One of them was a notebook I had bought when Nora was back-to-school shopping. It had a glow-in-the-dark cover and it was peaking its corner out from the bottom of the pile. I scrambled for it and managed to find my phone not far from the stack of paper and turned the flashlight feature on. The door was five feet away but it might as well have been fifty feet. I tried to pull myself together and managed to get into the doctor’s waiting room with acceptable decorum. A well meaning doctor walked in and made eye contact and I fell apart. She offered me water and patted my arm.

We went into her office and I did as I usually do when I’m embarrassed, I cracked jokes. We both were laughing within seconds of me being seated and she made one herself, “Well, I better be able to give you a correct diagnosis. It’s the least I can do after trapping you in my bathroom.” She took my stack of notes and we discussed Nora’s history. I cried some more. She listened. We agreed to meet again and that I would bring Nora with me next time. She promised me that we would sort out everything and help my daughter. I sat in my car afterwards and cried until I could see clearly enough to drive.

I returned with Nora two days later. The doctor greeted us and shocked me when I thought I could no longer be shocked. She didn’t need to do further testing. Most of it had been done previously based on the notes we requested and I hadn’t been informed of those tests or the results. The school knew all along. They had labeled her with autism themselves but didn’t want to acknowledge it because they would have to help her if they did.

The doctor reviewed Nora’s artwork, books she had constructed, and listened to her stories. She looked at me levelly and announced, “Your daughter is amazing.” I swallowed back tears and welcomed the hug as Nora sensed my emotion before I felt it and came to embrace me, “It’s ok, mama.” I set the stack of paperwork aside with the doctor’s summary and pulled her onto my lap.

“You’re right, baby. Everything is going to be ok now.”

Acceptance is a far off destination.

adhd, ASD, autism, equality, motherhood, neurodiversity, parenting, special needs, Uncategorized

Cathexis. Definition, the concentration of mental energy on one particular person, idea, or object (especially to an unhealthy degree).

I’d never heard of this word until yesterday. It’s an accurate label for this phase of my life and for the many parents, like myself, that have kids with special needs.

It takes a dedication and level of commitment that no one can prepare you for. Much like the all encompassing weight of stress and worry over their well-being and future if you’re not there to care for them some day. The fear that they’ll never be independent. That your life will end too soon and fall short of the length that they need you. Is there a greater fear than your child dying? For me, yes, the fear that I’ll leave them alone in the world unprepared, or incapable, to care for themselves.

Parenting kids with special needs becomes a vocation that seems only achievable if you throw yourself fully into researching on their behalf and supporting your kid as much as possible. I’m reminded by well meaning, unintentionally insensitive folks, that I really need to focus on “self care” and “get out more”. As if care workers are sprouting on the vine and all of them are willing to watch my kids overnight. Strange, but most sitters don’t want to stay over to watch two kids on the spectrum. One of which has ADHD and likes to wake up throughout the night to sing and scream demands while he rattles his baby gate. Quite often dragging his baby bottle against the bars like an inmate with a tin cup begging for water. Funny that.

Here’s another truth, it’s lonely. Even if you find other parents to kids with special needs that commonality makes it difficult to congregate. It’s difficult enough with small kids to have a conversation but with our kids we might not even make it to the door or we’re occupied with keeping them from running off, melting down, or some combination so maintaining a conversation beyond exchanging names is an accomplishment.

Autism Awareness month, for most of us, is bullshit.

What we need is acceptance. What is required to make that possible is equality.

Acceptance for our kids within families; because, yes, extended families are known for shunning you once your child is diagnosed. I’ve experienced this first hand and have had many arguments to explain that certain stereotypes are untrue and, no, us accommodating your preference of food is not the same as us asking you to make an “accommodation” of putting up baby gates before we visit so our son isn’t injured or elope out the door.

Acceptance in our communities. I can’t count how many times we’ve had to bodily remove our kids from an event or a public space because of others being rude or insensitive and triggering a meltdown that we then couldn’t avoid because of their presence. Insult to injury, those same people want to argue about our parenting while we’re trying to calm our child or, worse, continue to stare and trigger our child as if they’re baiting them into acting out. The mumbled agressions as we leave as the cowards then feel brave enough to comment to our retreating backs.

“If I had a kid like that I wouldn’t take them out of the house.”

“Why don’t you tell that kid to shut up?”

“Some people really need to learn how to parent.”

“That kid just doesn’t belong her.”

“If that was my kid I would spank him.”

We’re limited as to where we can take our children. We know that most places won’t accommodate us and not to expect it even if they have in the past. Many times we’ve had to leave places with our kids in tears because we couldn’t stay. The line was too long and no one would help us, the sound was too high and they wouldn’t turn it down, the restaurant was too busy and we couldn’t get a table in a quiet spot,… We’ve become accustomed to being discriminated against. Our kids have internalized their otherness and anything we say to bolster them up against it is futile to heal the wound of being rejected. We try our best and keep asking for accommodations but every day feels more and more like a gerbil wheel of failure. I’m chasing cheese that I can see and smell but never reach.

Accommodations are a form of acceptance in action. Awareness simply means you know about a condition or topic. Awareness means that you know when discrimination is occurring but acceptance is doing something about it and creating equity for others.

Equality is allowing my child to attend his neighborhood school so he can make friends in his community and be accepted as a member of that community, yet we’ve been turned away not once but twice. I have two separate drop offs and pick ups for my kids every day.

Equality is a place at the table, equity is having a functional chair.

For instance, my daughter’s school has ADA accessible entrances but half of the door buttons are malfunctioned so if you’re wheelchair bound you have to wait for someone to open the door. The school by law is up to code for ADA standards yet they chose to house the children with special needs on the second floor so they have to use an elevator to access their classroom when there’s ample space on the first floor for their class. Yet that would be mean them being visible to other students and part of the daily community. A community that they entered into after most likely a long battle on their parents part because I’ve yet to win that battle for my son who is not allowed to attend the same school as his sister.

Even if I was to get my son into the neighborhood school, they like many others, make it very clear that they do not accept children with special needs. They are aware, they will accommodate them begrudgingly by law, but they do not accept them as equal to all other students. It’s not as if a sign is posted telling them to “go home” but it’s unmistakable when every area of a school is geared towards able students and kids with special needs are excluded.

So often children with special needs are shoved off into inadequate classrooms and corners. Given “sensory corners” to sit in and calm down when they are overwhelmed. The clear message being that it’s their problem, their fault, for being over stimulated not that the class needs to be reminded to keep their volume down or that the space needs to be reconfigured. The child with sensory issues is told to put on headphones and sit in a corner. It sets them apart and reminds them that they are different and unaccepted.

School assemblies and celebrations, a flood of students all talking at once in a high ceiling gym without a single student with special needs or disability in sight. Every week or month appointed for awareness around Developmental Disabilities, Autism, or a physical condition goes unrecognized as children make decorations for other events for more important to the rest of the school to acknowledge like Presidents Day or a “Fun Run”.

The cathexis of my existence is my children. That might seem unhealthy or unwarranted to some. To that I say, do you feel accepted? Do your children fear being excluded at every moment of their life? Do they feel unwanted in their own classroom? Can you leave the house and experience moments as a family, together, without fear of being discriminated against and turned away?

I’ll continue on with my cathexis until all the chairs at the table are functional and every person has a place.