Shadows and votes that go bump in the dark.

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

“I can’t, mama…I just can’t.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Owen, turn it down… please.”

“Ok, ok,… th’orry.”

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

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

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

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

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

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

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

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

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

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

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

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

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

“I know you didn’t mean to hurt me.”

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

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

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

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

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

“Yeah. Mama is fine. Owen is ok too.”

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

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

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

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

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

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

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

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

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Amazing Things Do Happen

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

“Am I autistic?”
“Yes, honey,” I push a lock of hair behind her ear and watch the emotions flick across her face before she smiles knowingly, “Are you autistic?”
“Nope.”
“Can you tell me what it means again?”
“Sure.”
“Can you tell the other kids at Girl Scouts?”

I was stunned, proud, and bewildered yet again by this kid. This girl that never ceases to amaze me with her kindness, sensitivity, thoughtfulness, vulnerability, and, yes, her many wounds from the mistreatment of others. She desperately wants to fit in and be accepted yet many days this world doesn’t seem to be meant for her and it goes out of its way to show her so.

We watched a video recently, Amazing Things Happen. It popped up as a recommendation in my YouTube feed and my faith in the internet was restored. What a fantastic piece of work and a way to explain autism to kids, not only about themselves, but to others that want to understand how it feels. The first time we watched it she turned to me and said, “Can we watch it again?”

After the second time, she asked, “Can we show this to the other kids?”
“Yeah, is it accurate? Is this how you feel?”
She hugged me and whispered into my body, “It’s how I feel all the time.”

I cried not because I felt pity for her or any other kid that experiences the world as she does. I cried, like so many days, because I don’t see the world as she does and I struggle to understand how or to protect from the people that would abuse her because of this. What she senses eludes me at times and I’m trying to help someone that doesn’t need help but for the world to stop judging and imposing their expectations on her. To just stop. Stop being so loud, so demanding, so imposing, so much of everything.

Many have shared with me once that they’re offended by the puzzle piece symbol. The Autism Speaks rainbow puzzle piece has become ubiquitous with awareness around autism but the symbol itself has a negative connotation of implying that a person with autism is a “puzzle” to be solved, to be cured. This negative perception is only heightened by its origin of Autism Speaks creating its use seeing that they have come under fire from the society of autism for only investing towards a cure. A contentious outlook from those that believe autism is not a disease or disorder requiring a cure.

It’s unfortunate that so many parents use the puzzle symbol with wholly good intentions to represent the struggles that their children face and I understand why they identify with its use. They want to belong to a movement of awareness and for that I don’t blame or judge them. But, for me, I prefer the rainbow infinity symbol that represents neurodiversity and the acceptance of autism. Yet the use of either symbol doesn’t offend me or change my opinion towards the subject of autism or the people I love that are diagnosed. To me, it’s undeniably a large part of who they are and a physiological difference they have from others; however, it is only one aspect of them and not their entire identity.

So how do you explain all of that in terms that a neurotypical, average kid can understand? How do you create an activity analogous to autism to illustrate how autism feels to a child?

Well, that is exactly what we’ve undertaken these past two weeks. We’ve been preparing a presentation for my daughter’s Girl Scout troop and practicing answering questions that might come up. As we were eating lunch together, I asked her if she wanted to watch the video again today. She said yes and we watched it companionably in silence. It ended and I asked, like I do every time now, “Again?”

She smiled and said, “Yes,” with a giggle.

I hesitated and asked, “Nora, what does it feel like to be autistic?”

My throat tightened and I secretly hoped that she would share with me and not be upset with my question. That her feelings weren’t hurt by me pushing and prying a little further so that she would let me in to her world. Yet again, I was astounded by her insight that always seems to come unexpectedly and at an angle I could never predict.

“It feels amazing. I’m different but so is everyone else.”

Amazing Things Happen: http://amazingthingshappen.tv/?projects=amazing-things-happen

Just trying to pass as happy.

adhd, ASD, atypical, autism, mental health, motherhood, neurodiversity, parenting, politics, special needs

“What does that say Owen?”
“It say “happy” like me. Like Owen.”
“Wow! That’s great reading, baby!”

I bit back tears of joy and hugged him, “That makes mama so happy to hear that you’re happy.”
“Mama, ok?”
“Yes, baby, sometimes people cry when they’re happy.”
He looked confused and laughed at me, “Mama, silly.”

The conversation spiralled from there when I asked him to wear clothes but despite that I teared up. It was the first time he had said he was “happy” before. It was the first time he had verbally identified his emotions to me.

How many times have we been told that he wouldn’t be the child we have today? How many moments did I despair of not hearing his voice only to wish at moments now that the echolalia would let up for the day? How many of the past predictions am I grateful are wrong and how many of them might still someday be true? There’s so many conflicting emotions in an average day that I find myself spinning and waiting at the center of it all feeling my ears rings from the din.

He’s a happy kid yet a mercurial one. His emotions are always lurking just under the surface like an alligator waiting to lunge or a dolphin surging with joy.

The further we go along the less I understand or feel confident in the research about my kids and the more sure I am of knowing them. I know that they will change the moment I feel I have a grip on the phase they’re in currently. I know that experts are all too often wrong and biased by their own experience. The child they perceive is not the one I know. I know that my kids ache. That it’s possible to be happy in the moment yet carry a deep sadness that is waiting just at the edges like an interloper photo bombing the imaginary picture of your expectations. I see it in their eyes when other kids move away from them and disclude them. I see it when they watch others play and talk themselves out of joining because it’s too loud, too crowded, or too overwhelming.

I ache for them when I see their silent struggle and I rankle when I hear other adults minimize this and their feelings.

“They just need to get out there and play…”
“My kid struggles with that too…”
“Maybe if you…”
“Wow, your kid is REALLY sensitive…”
“Yeah, kids sure can be mean…”
“Well, you know, everybody seems to have autism nowadays…”
“Kids will be kids…”
“Isn’t that just how boys are though?”
“Temper tantrums, huh? Yeah, mine have them too…”
“It must be hard to be like that…”

Yes, it is hard to be like “this”, ignorant stranger. If by “this” you mean that it’s hard to suffer people sharing their unsolicited opinions about my parenting as I try to help my kid through a full-blow sensory meltdown as they hover and ask questions causing my kid the further pain of shaming them in public by drawing attention to their discomfort. Pecking at me with comments and questions like a mosquito feasting at me with abandon. Judging me and my child simultaneously all while trying to be understanding of my plight which implies that you are superior since you have so many nuggets of wisdom to share with me while my child pummels me and screams.

Then there’s my daughter whose meltdowns are typically silent. The agony is in her eyes and stooped posture as other children stare and whisper, push past her, refuse to speak to her, skip over choosing her for games, or demand to know “what’s wrong” with her as she further shuts down. She forces herself to smile, make eye contact even when it hurts, pulls at her hands and lips to stop herself from stimming, and panics over every word and how she enunciates it only to make herself stutter and stammer more pronounced. I see it before I hear her as I go to pick her up from a three hour day camp. I watch her in the backseat as she stares out the window singing along to a musical that she’s memorized by heart.

She’s trying to pass as happy. She desperately wants to be liked and accepted. Yes, just like your child but, no, she is not like yours. Yours is neurotypical, mine is many labels but ultimately judged as atypical by others. To me, they both are as exotic as an undiscovered species stumbled upon in an unknown world and I’m fumbling through their language.

I love them exactly as they are and hope for a day that people stop pressuring them to pass as anything but themselves. Wouldn’t we all love for that? I know that’s where most of the advice and questions come from so I smile, answer candidly, and keep grasping myself at trying to pass as happy even when I am not.

When you’re a parent of a child with autism there’s the additional expectation of being their champion from others. There are moments where I don’t feel strong enough for that mantle. I just want someone to tell me it’s ok to be a mess that day. I just want someone to see me and tell me I’m not alone in feeling that it’s fucked up but that’s probably too much to expect. We’re all trying to pass as happy in our own way.

Stop being an @sshole.

equality, March for Our Lives, parenting, politics

It’s a simple yet, at times, difficult expectation we have of our children. We ask them to be kind.

We try to teach them about the balance of justice in our small acts of asking them to return a borrowed toy, to say “hello”, to say “thank you”. Where does that kindness go as adults? How do our kids make sense of a world where parents and educators ask them to be kind yet they can’t expect to be safe in their own school? How do we stop violence before it begins?

They witness violent tragedies every time they hear of another shooting and every time they have to participate in yet another drill. Every shooting brings about impassioned responses about guns, mental illness, school policy, politicians, and our children. Yet the words “every shooting” should upset us more than any of those topics.

When our own children are calling “bullshit” and saying “enough” for us then we have failed them.

We have colossally missed the simple mark of keeping them safe in one of the few places they should never doubt their safety, other than their home, their schools. Yet we see no forward movement in making any positive change in the situation other than our schools now becoming accustomed to “active shooter” drills and locking down the building as if our kids are imprisoned rather than being educated.

Where does this end? What will it take to change the habituation to violence that has reached so far that our kids are having to endure the fear of being attacked in their schools?

In the past, I’ve been guilty of stating “no guns” and being filled with dread for my kids. Now, I see why others might find this dramatic but I find the apathy of others horrifying. You’re right, it’s legal to own a gun and you can choose to do so. I don’t agree with that right but I’m willing to hear you out as to why it is so important to you. To me, that’s being open-minded. Just the simple act of listening with kindness.

I have a crazy theory that I’ll throw out there. Stop being an asshole. Stop valuing your political beliefs over the safety and lives of our children. No one is asking you to give up your rights. The reasonable request being made is to be responsible and vote with logic that no one with a criminal background or violent history should have access to a weapon.

We wouldn’t allow a pilot to fly a commercial plane unlicensed and risk the lives of hundreds of people yet we’re ok with the idea of armed teachers around our kids every day. Some states require little to no training to own a firearm and many don’t require background checks.

Personally, I don’t think anyone needs to own a firearm; on the other hand, I have no problem with an adult owning them if we had proper controls in place to keep violent criminals from owning them. If there were proper laws and if they were followed: an adult owner would be fully researched and registered, have proper training, and storage for their “boom stick”.

The gun owners that frighten me are the ones that cry foul over such protections for all of us and feel that the right to own a gun is fundamental when, clearly, they have no idea how the Constitution works or why the Second Amendment was created. You could Google it but allow me, the Second Amendment was created to protect states rights to protect themselves before the days of the National Guard.

I sincerely doubt the original intention of our forefathers was to allow someone to have a gun rack on his truck and show off his AR-15 to his buddies at a tailgate party. If a gun serves as a grown up dangerous toy then just spend money on something far more enjoyable but potentially harmful like Botox, a trip to Taco Bell, or a lap dance during happy hour. All bad decisions but perfectly legal.

Here’s something else to consider: every school shooting has been a male, typically, lone white assailant. Women get accused of being crazy far more often then men yet we’re not commmitting school shootings and mental illness is the cause according to staunch gun advocates.

So where do we begin? It starts with our parenting, with our choices, and the act of being kind. Raise your kids to be kind. Do I need to be more blunt? Stop being an asshole.

Stop arming our teachers.
Stop scaring our kids.
Stop blaming the mentally ill.
Stop the violence.

Boys will not be boys. Violence doesn’t need to be condoned. We need to focus on what has driven a child to become violent and help them before it starts.

Mental illness is not dangerous or criminal just the choices people make.

Your gun is never as important as a child’s life. This is about our kids getting an education without the fear of violence. Please, here’s your public service announcement, stop being an asshole.

https://event.marchforourlives.com/event/march-our-lives-events/search/?source=ggnp_mfl_b&utm_source=gg_mfl_b_&utm_medium=_p&utm_campaign=mfl_b

https://www.politico.com/magazine/story/2014/05/nra-guns-second-amendment-106856?o=1

https://www.army.mil/article/70758/national_guard_marks_its_375th_birthday

https://www.statista.com/statistics/476456/mass-shootings-in-the-us-by-shooter-s-race/

I don’t love autism.

adhd, ASD, autism, motherhood, neurodiversity, parenting, politics, special needs

“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?

I love my family but I hate how they are treated by others. It makes me hateful towards their autism as if it’s an invisible villain stealing our happiness.

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.

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. You’re special.”

Politely Defiant

ASD, autism, marriage, neurodiversity, parenting, politics

“No, ‘tanks. Not yet…No, thank YOU.”

I hear this statement frequently from Owen. It epitomizes his character and willful spirit. Even as he is defying you he is doing so politely. He is kind yet abrupt and I love him all the more for it and find it to be true of most people I love in my life, my two children and husband. To be autistic for them is to continue to be true to their nature despite the insensitivities and intolerance of others. To embrace their otherness is a daily act of defiance in the face of those that are unwilling to accept them.

Not that long ago I received a message from a reader who referenced an article having to do with the privacy of children and this person felt “mommy bloggers” like myself were sharing information that their children might find embarrassing some day. Let’s just ignore the misogyny and judgement and focus on the obvious flawed logic. The message implied that I was betraying their confidences and that they would resent me someday for doing so. As if it’s possible to raise a child and have them NOT be embarrassed by their parents. Yet part of me gave pause, questioned the validity of their argument, and the fact it made me question my own beliefs lead me to my decision.

Starting next month I will be moving all political and social commentary to a new site, Politely Defiant, at http://www.politelydefiant.com. All anecdotes and discussion about my kids will remain at Kelso Kids but I will be limiting access to the site to protect the privacy of my children. Not only because they’re now attending school (and can read!) but to allow them the chance to make mistakes and not fear what I share.

This will also give me the freedom to share opinions and discussion on Politely Defiant without fear of it upsetting those I love or causing conflict for them. And by “conflict” I mean them getting upset with me personally for disagreeing with their politics. I know I have lost followers in the past because of my beliefs and to that I say, farewell. Whether you are a loyal reader or a blood relative, I have not hidden my views and I won’t to please anyone.

Parenting children on the spectrum, being accepting of autism, is an act of defiance in itself.

Not that long ago, parents like myself were pressured by doctors and educators to institutionalize their children. To commit to parenting an autistic child was seen as foolish at the least and shameful at the worst. Such attitudes still influence society’s treatment of neurodiverse children and I do not deny that it hasn’t taken on a large part of my focus as a writer. For those of you that are looking for support and a safe place to share your experiences with neurodiversity then I welcome you to Politely Defiant. For those that want to find out when Owen figured out how to remove the heating grates, come see us at Kelso Kids.