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.

Advertisements

What the &$#@ were they thinking?

autism, mental health, parenting

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

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

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

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

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

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

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

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

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

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

Learning the kaleidoscope.

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

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

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

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

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

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

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

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

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

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

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

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

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

Snowgasm

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

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

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

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

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

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

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

He yelled back, “I being kind!!!”

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

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

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

They muttered to each other and dropped the snowballs.

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

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

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

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

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

The right to be safe.

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

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

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

———————————————–

“Mama, why am I so different?”

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

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

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

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

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

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

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

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

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

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

“Mama, why am I so different?”

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

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

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

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

——————-

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

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.”

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.