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

When acceptance isn’t accommodated

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

As a parent, your expectations about your life change the moment you realize that you’re bringing another life into the world that will be dependent upon you. Then your child is diagnosed as special needs and that additional responsibility shifts your expectations yet again. The word “accommodate” gains a different definition with the weight of its legal ramifications and societal implications. It denotes battles with educators. It signifies the appeal you make to family and friends to accept you and your children.

I went through a grieving process with each diagnosis for my son, then husband, then daughter. Each with its own set of revelations, challenges, and eventual adjustment. At first, I struggled to explain to others our circumstances hoping for acceptance in hopes of them staying in our lives. Then I realized that I couldn’t expect them to understand what they didn’t want to acknowledge. I can’t expect them to accommodate us any more than they can expect us to be neurotypical.

After so many last minute cancellations, or change in plans, people stop inviting you. The phone calls stop because they can’t hear you over the meltdowns in the background. They don’t want to deal with your kid but they don’t have the courage to tell you. The diagnosis is a downer to them and they don’t want to hear about it. They maybe see the signs of it in themselves or their kid and don’t want to discuss the topic lest they have to face it in their own life. They don’t believe in the diagnosis of autism. We’ve heard it all and all of it delivered with equal measures of good intentions and ignorance.

“They look normal are you sure they’re autistic?”
“Have you tried…?”
“Maybe they’ll grow out of it…?”
“We’re so sorry. Well, at least they’re not sick…”

The hardest days are the ones where no one is willing to accept them including myself. When I’m not accommodating them by being unreasonable. Now I don’t try to convince others what I know to be the truth. My kids are amazing.

If atypical means intelligent, polite, opinionated, creative, sensitive, and loving then I’ll take it over neurotypical any day. I can only assume that neurotypical should have the negative connotation since most of the kids who’ve abused, bullied, or traumatized my kids are considered “normal” .

With every passing year, I find myself adapting to yet another seismic shift in my perception of my family and struggling to find my footing. Yet the most painful is the trauma my kids have had to suffer. A close second is the loss of those I’ve cared about who won’t accept them. Their lack of accommodation cuts the deepest of all.

The true acceptance I hope for is that anyone who claims to love someone who is neurodiverse will learn enough about their condition to show them that they care and that they will always accommodate them in their heart.

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.

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.”