Harmony at Halloween: All color of buckets are welcome at our door!

adhd, ASD, atypical, autism, equal rights, equality, inclusion, neurodiversity, parenting, politics, special needs, special needs parenting

Harmony at Halloween: All color of buckets are welcome at our door!

Ever have one of those social media moments where you cringe and want to crawl into an ethernet hole? No? Then you’re not me.

I, with all good intentions and little forethought, shared an article on a social media site and asked for people’s opinions about kids using a blue bucket for trick-or-treating to signify that they are on the spectrum. Why did I do this? I was looking for other’s opinions and genuinely wanted an open discussion about the topic. What I didn’t anticipate, and should have, was a social media clash of politics and high emotions. Some of it was directed at me for even sharing the article but I honestly enjoyed the conversations and it opened my eyes to some perceptions that I hadn’t considered.

For those undoctrinated, there are different colored Halloween jack-o-lantern buckets to indicate if a kid has food allergies, teal buckets for instance, and a growing number of families use blue buckets for kids on the spectrum.

A few angry parents remarked that we might as well use different colored buckets for everything. They probably meant that flippantly but I don’t think that’s a bad idea. If we’re hoping for an inclusive, accepting world then a rainbow of colors in our candy buckets sounds like a fun idea to me. I’m all for people over sharing rather than being silenced for fear of ridicule or shamed into masking their true identity. The only masks we should wear are fun ones. (It’s Halloween after all, not a Republican rally.)

There were a few parents concerned about their kids being stigmatized by using a blue bucket as an invasion of their privacy. I can see that point of view as well; however, the more open I am about my family being neurodivergent the easier time we have in interactions and the more accepted my kids feel. I tell them every day how much love I them and how proud I am of them. To me, they really are super heros. Costumes or not.

Being open about neurodivergence gives others a chance to feel comfortable asking questions and it prepares them for some of my kids’ behavior and it shows that we’re willing to discuss autism with them. We’ve had many moments where we’ve been approached and asked questions and it allows for the conversation that a lot of us hope for as parents. It’s not comfortable all the time but I’d rather the discomfort than make my kids feel like I’m hiding their identity from the world. Autism isn’t soley their identity but it’s a big part of who they are because it affects them physiologically. 

The logical question, on the flip side of this, is do my kids mind me being open about their neurodiversity. It’s a valid question. When it comes to my writing, the rule is that I ask the kids before I post. I review what I’m going to share with them and allow them veto power on what gets posted or published. That includes anything I quote and any photos I share. It’s a hard rule to follow, I won’t lie. There are pics that I gush over and feel a pang of disappointment when they ask me not to share, but I also understand. It’s their image, their identity, and I have to respect their wishes when it comes to sharing.

Much like the developmental stages we’re nearing, my writing has evolved based on the comfort level of what my kids allow me to share. I know the day is coming that they want me to keep everything private and I’ll honor that. Besides, I want to hear what they want to share.

My vote on the color of your bucket, wear and share what you want and celebrate however you feel comfortable. I just know I’ll have four buckets for you when you come to the door: teal for allergies, silver for chocolate, blue for toys, and orange for what I won’t share with you at all and binge eat once the kids are asleep. Happy holiday!

When your kid is more woke than you.

adhd, ASD, atypical, autism, equal rights, equality, inclusion, neurodiversity, parenting, special needs parenting

“Mama?”

“Hmm?”

“Why is it ok for boys not to wear pants?”

I put my phone down and gave her my full attention, “What?”

“Why is it ok for boys not to wear pants?”

My mama-bear-full-red-alert alarm fired off in my brain, “Who was around you without pants on?”

She gave me a funny look and said, “Owen.”

My brain fired off an “all clear” and I relaxed, “Ah, well, yeah…Owen is not fond of wearing pants,” I saw him sit up a little taller but not look my way as a smile crept up on his face, “but we’ve talked about this and HE KNOWS that he’s supposed to wear clothes around you. Right, Owen?”

He giggled, grunted, and made loud car noises as he launched his teddy bear off his cardboard tower.

I smiled and turned back to Leonora, “Is someone else not wearing pants around you?”

She thought about with an expression like someone considering a deep, philosophical question and replied very solemnly, “No, not this week.”

I pulled a face at her and bit my tongue as she continued since she clearly had prepared a narrative on the subject and was putting great effort into getting her point across.

“Girls wear pants or stuff on their bottom,” I wondered what the other “stuff” might be referring to, “but boys can run around without pants on and everyone thinks it’s funny…it’s not fair.”

She was right. Huh, why the hell IS it funny to people but if a girl of her age were to do so people would be uncomfortable or outraged yet it’s still considered funny for boys or men to walk around without pants when they’re at home… Holy $#*!, my daughter is way more woke than me!

“That’s an excellent point. It’s not fair, is it?”

“No.”

I gave her a side hug and asked, “Are you wanting to run around without pants on?”

She pulled away and her eyes widened in shock, “NO.”

“Ok, ok, just curious but you’re right. If someone is being inappropriate and making you uncomfortable it’s ok to say something or get away from them. ESPECIALLY if they don’t have pants on – “

“MA-MaAAAA!”

“Ok, ok, I’m sorry. Just worry about you.”

She hugged me (the best way to shut someone up ever) and ran away.

I watched her as she ran out of the room and wondered to myself, why IS it ok for men to not wear pants around the house?

Just then Owen walked by chanting “butt” and I shook my head and groaned. He looked up at me and smiled with his eyes squeezed shut, his version of eye contact, and I kissed the top of his head. He laughed and ran back to his cardboard fortress.

She was right. Even though the discussions around gender, identity, self governance, and equality had changed and become more open as of late it doesn’t change the reality of there being tangible differences in the smallest nuances in our daily lives. Those subtleties of social norms that our kids pick up on and call out more readily than we do ourselves because they see them for what they are, nonsense. The double standards are so far reaching that they seep into the smallest of interactions to the largest of matters in our lives. In my children’s case, their health.

We struggled to get an accurate diagnosis for our daughter for six years. She’s eight. The crazier part? We only received that because doctors started to listen to me AFTER our five year old son was diagnosed when he was two. Leonora was five at the time. I had already been asking for help to support her for three years at that point. A particular low point was when a pediatrician met with us, seemingly listened, and silently handed me a note on the way out the door with a name of a counselor. When I reviewed my daughter’s paperwork, they had noted that I was an “anxious mother” and that she clearly didn’t show signs of autism.

Autistic women are discriminated against the moment they’re born. Not just because they’re female (check) or because of their race (check) but because all assessments and diagnostic tools are created for men and not women. (I’ll give you a moment to ponder or Google that.)

The bias in the medical and mental health fields overlook girls so often that the assessment and diagnostic tools have still yet to be updated or modified to truly be inclusive of women or girls. Which leaves parents, like myself, hanging with the proverbial question of, “So?…” Yet there’s no reply and only more questions.

We’re fortunate that we found an expert Psychologist and that our daughter now receives the support she needs yet autism is still studied and treated as a mental health issue which it is not. It’s not a disease or disorder to be cured but, in my opinion, a physiological difference that requires a different approach and sensitivity in most aspects of their lives. Just like anybody, my kids want to be accepted and treated equally. Yet, unlike parents of neurotypical kids, I feel as if I’m left with questions that the experts can’t reliably answer.

Will they ever find love and maintain a relationship?

Will my kids ever be able to live independently?

Will they be able to attend college and succeed in getting a degree?

Then again, all parents worry about these things in varying ways because deep down we’re all the same and want the same things. To have friends, to be loved, to be accepted.

Autism’s sex ratio, explained

Righting the gender imbalance in autism studies

https://sparkforautism.org/discover_article/are-girls-with-autism-hiding-in-plain-sight/

https://www.autism.org.uk/about/what-is/gender.aspx

https://link.springer.com/article/10.1007/s10803-016-2872-8

A badge or a burden: the trauma we carry

adhd, ASD, atypical, autism, Complex PTSD, Homeschooling, mental health, motherhood, neurodiversity, parenting, PTSD, special education, special needs, special needs parenting, trauma

My friend phoned me to tell me what I expected. Her mother had been placed in hospice only days before but I knew. We only called each other when it was too hard to write what we needed to say or we needed to hear each other’s voices. Her mom was gone.

I sat in silence and thought about her family and my own. Trying to imagine what my friend was feeling at that moment. Thinking of how many struggles she had endured in so little time. How the length of our friendship was colored by so many of those for us both. I began summarizing in my head all of those traumas in my own life and began with the one that my family thought was amusing and I found painful still. Our move to Oregon (but that’s a story for another time) and touched upon the one that truly shaped me from that day forward.

I’ve had PTSD since I was six. It began the moment I watched our family home burn to the ground. Frozen in place, listening to the sounds of my mother screaming and keening. I would like to say things improved from there but they didn’t. So I learned to expect another crisis around every corner and that good luck was for other people. It took years to unlearn this thinking, a diagnosis of Complex PTSD
, and the acceptance that we all have our sorrows and come 1through life wearing our setbacks as a badge or a burden.

The layers of trauma changed in variety over the years. The moments compressed into me like the striation marks in the earth. Ever changing, ever present, and unbidden. Once a source of shame and now simply marks on my body like the remnants of pregnancy or aging. Something I can acknowledge and feel a sense of achievement from or something I can hide and only deepen the pain brought on by seeing them in an unkind light.

Listening to those dark, ugly voices of criticism in my low moments can dtill happen but I’ve learned to question those voices and quiet them with kindness for myself. Those same voices that lurked throughout my childhood are now gone but the memory of them haunt me like tinny piped music. I can choose to escape them or confront them but I acknowledge that the hurt from those people marked me but hasn’t marred me.

Now, as a mother, I feel as if I have a new terrain of PTSD. The terrain of trauma sustained by my children. The bullying, the attacks, the judgement.

Accepting my children’s neurodivergence wasn’t difficult. Accepting the treatment they receive from others is something I have to fight on a daily basis at times and it can feel insurmountable. From strangers to doctors, to teachers to extended family, we’ve had a litany of interactions where we’ve had to navigate the misunderstandings around autism and tolerate or battle the misconceptions people have of autistic people.

Whether you’re neurotypical or neurodivergent, misunderstandings happen constantly but the difference is that I can process this and respond whereas my kids, by in large, cannot. The lag time in processing in combination with their trauma compounds into a snarl of frustration that results in simply being overwhelmed to the point that they shut down or melt down. Many of us can relate to this feeling but not to the extreme that they experience. Their experience is our version of being tongue-tied amplified by the thousands. Take that feeling and color it with trauma and they end up blaming themselves for not being able to keep up or join in a mundane conversation.

It was during one of these interactions recently that I had an epiphany. Because autistic or otherwise, trauma colors our filter of the world for better or worse and that filter never leaves us but can unexpectedly be a strength. For instance, and I’ll freely admit I’m biased, my kids are the most thoughtful and forgiving souls I’ve ever met. They will go out of their way to be kind to others and generous to a fault. Their struggles to find and keep friends haven’t hurt them but made them more empathetic towards others. Maybe a little too intensely at times, but all and all, to their betterment.

After three long years of trying to make public general education work for both of our kids we made the hard decision last year to place our son in a self-contained classroom and opt out of school completely for our daughter and it’s been the best decision we could have made for either of them. I had many doubts seeing that I knew little about special education three years ago and never intended to homeschool and was always an advocate for public schools. Especially the strong belief of staying in your neighborhood school yet when that school doesn’t want your child to attend, and makes it clear that they are not willing to accommodate them, you’re not left with many choices.

I feared that she would be socially isolated, bored, or – worse – regress if we homeschooled. To my relief, none of that was true. Except for she admittedly became lonely until we found independent studies and activities for her to join with like-minded kids. (It’s no easy feat to find other eight year olds who want to read history books and knit. We found the first and the second request was met by her making friends with the “Chicks with Sticks” club at her grandmother’s assisted living facility.)

We allowed her to unschool for a year and then gradually added academic structure back into her life. It’s made a world of difference not only for her but our entire family. It reinstilled her confidence and renewed my hope in her being able to attain an education and a sense of fulfillment. Her trauma can be a source of learning and not an impediment to her growth.

For me, the nightmares don’t go away. I’ll never feel comfortable sitting with my back to a room full of strangers. I’ll never stop worrying that the horrors that befell me might befall my own children. Yet I know that they can not only survive but thrive, not in spite of, but possibly because of those challenges and have a deeper sense of kindness to show from their scars.

https://www.ptsd.va.gov/professional/treat/essentials/complex_ptsd.asp

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.”