equality

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

Shadows and votes that go bump in the dark.

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

“I can’t, mama…I just can’t.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Owen, turn it down… please.”

“Ok, ok,… th’orry.”

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

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

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

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

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

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

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

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

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

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

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

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

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

“I know you didn’t mean to hurt me.”

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

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

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

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

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

“Yeah. Mama is fine. Owen is ok too.”

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

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

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

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

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

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

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

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

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.

One mom to another.

equal rights, equality, freedom of speech, Me Too, politics, Times Up

My open letter to Ashley Kavanaugh:

Dear Ashley,

I wanted to write to you and let you know that your composure during your husband’s time in front of the cameras is admirable. You were calm, brave, and reserved. My concern, like many parents, is what happens once those cameras have moved on.

As a parent, we worry about the safety and rights of our children. As a parent of children with special needs and one a survivor of assault, I implore you to please be a voice of reason to your husband and others in giving equal rights to all of us. That’s all any of us truly hope for and should expect. The chance to have a say over our own bodies, our health, our lives, the planning of our families.

Respectfully.

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.

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.

Stop being an @sshole.

equality, March for Our Lives, parenting, politics

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s just a joke.

equality, freedom of speech, politics, Times Up

The recent revelations about high profile sex offenders are more than a wanted poster for the #MeToo or Times Up movement. They’re living examples of misogyny that have been the impetus to a discussion that at times sheds light on the casual observer more than the accused.

It says more about the people reacting to them than the people themselves. The facts of the scenarios show many of the accused to be criminal yet people like Dave Chappelle and Matt Damon want to joke about whether it’s funny, or “that bad”, instead of using their celebrity to support others who don’t have the benefit of their privilege. Rape and harassment are criminal, it’s not funny, but celebrities like them are insulated and delusional enough to want to argue over the semantics of such crimes as if it is amusing, or theoretical, as opposed to supporting those speaking out about oppression.

Dave Chappelle kicks off one of his latest stand up acts, “The Bird Revelation”, on Netflix with this line, “Sometimes, the funniest thing to say is mean…You know what I mean? It’s a tough position to be in. So I say a lot of mean things, but you guys got to remember. I’m not saying it to be mean. I’m saying it because it’s funny.”

Throughout the show they pan over the audience and make a point of zooming in on women laughing (most of whom are doing so while looking down) as if to show this is proof that they agree with him rather than politely acquiescing, as all good gas lighted women are expected to, or possibly reacting out of shock. Because if anything, our societal gas lighting has taught us as women that we need to give in and “take it”, as Chappelle says himself, because we need to be in on the joke. That true comedians know what they’re getting themselves in for since harassment and abuse are part of that world.

This is nausea inducing, this is misogyny, and this is someone rationalizing their part in enabling such behavior. Simply put, if that were true for all comedians and not just female comedians, then Dave is saying he’s ok with being raped.

“And everything is funny until it happens to you…,” If only he listened to his own advice.

“Yet, and yet, it is important that I acknowledge ladies. You are absolutely right. There you go. And we gotta all be mindful of that, guys, because…this could have happened to any of us. It could have happened to me. I can see that.”

He then proceeds to insinuate a connection between attractiveness and the likelihood of giving consent because apparently if Brad Pitt wanted to rape you it would be acceptable as opposed Harvey Weinstein. I’ll take the non-rape option, thank you. It’s easy to joke about rape if you haven’t experienced it, if you haven’t had a loved one attacked, or as he likes to say himself “everything is funny until it happens to you”.

He makes jokes implying that the victims should have known what Weinstein intended when they were asked to meet “at 3am” but then contradicts himself by saying what a “nightmare” it would be if someone “pulled their dick out at a meeting” to him. Why, yes, Dave, half of the population can imagine that since most of us females have experienced criminal behavior of some kind at work or otherwise in regards to being harassed or abused.

He goes so far as to label victims to have a “brittle spirit” if they couldn’t withstand being abused and to say that Louis C.K. losing his career was “disproportionate” to the crimes he committed. Those with similar views to Chappelle don’t call these events “crimes”, which by legal definition they are, they call them “sexual acts”. Much like Alec Baldwin coming to Woody Allen’s defense or the schmuck clapping Trump on the back (take your pick as to which one).

“This is all happening for a reason. And, ladies, I want you to win this fight. Ten years ago I might have been scared, but, you know, I got a daughter now. So if you win, she wins. So I’m rooting for you. And I agree with you. At least, ideologically, I do. I don’t know if the- I don’t know if you’re doing it right, but I mean, who am I to say? I don’t think you’re wrong. I just think that…You can’t make a lasting peace this way. You got all the bad guys scared. And that’s good, but the minute they’re not scared anymore, it will get worse than it was before.”

“Fear does not make lasting peace.” Now isn’t THAT amusing. His contradictions epitomize the no-win scenario most women face. If we speak up then we’re bitches and if we stay silent then we’re complicit with our attacker. If we strike fear into the hearts of those that oppress us then we’re causing civil unrest apparently. Here’s an idea, maybe make jokes about the attackers and stop tearing down their survivors. Maybe be a positive force in helping out other comedians to be able to perform without fear of harassment or attack from fellow comedians. I would imagine it’s pretty difficult to be amusing when someone is cornering you backstage and threatening you.

“Because men want to help, they’re just scared. Ben Affleck tried to help. “What happened to these ladies is disgusting.”” Then makes an exclamation about Affleck’s past abuse and jokes that’s why men are unsupportive and unwilling to get involved in the discussion around misogyny is out of fear. If that were true, that all “good” men didn’t want to get involved in supporting their fellow citizens out of fear of incrimination doesn’t that mean in essence that these men are not all that great? If you have nothing to fear about your past behavior then why would it be an issue to stand up and say “Times Up”?

“Yeah, man. Well, you ladies were right. Be honest with you, your lives look terrifying to me. They do. Man, I know nothing about being a woman, but I know fear.”

He goes on to equate being a woman with carrying around a backpack full of money. “Then I thought, “Holy shit, what if I had a pussy on me all the time?”

Scattered male laughter, “That’s what women are dealing with.”

No, Mr. Chappelle, we’re dealing with living in a world that is shaped by people with opinions like yourself that equate women to a commodity. Reduces our existence to a monetary value of our genitalia or the quality of our work and art by how attractive we are. The reality is that people still pay money to go to shows like yours and have their hatred perpetuated and supported by your jokes that make them feel ok about objectifying women. It is terrifying to be a woman because I know that I am not given the same rights as a man and that if I’m attacked I will most likely need to justify why I’m the victim and the attacker is unlikely to be found or convicted. The Equal Rights Amendment never passed, our rights are eroding as fast as the environment that is now largely unprotected that we live in, and I am horrified at the prospect of what this means for not only our daughters but our sons.

“Everybody gets mad because I say these jokes but you gotta understand that this is the best time to say them…you have a responsibility to speak recklessly…”

It’s probably the one redeeming part of the act I agreed with yet it just made me shake my head, not laugh. I wish I could go back to when I found Dave Chappelle funny and thought he was kidding but we all know there’s little that’s funny about the times we’re living in and that we all were kidding ourselves in the past by smiling and trying to be in on the joke.

Freedom of speech is just that, the right to speak freely; however, it is not freedom from consequences. It gives you the right to speak recklessly but it does not forgive you from the responsibility of doing so. If you shout fire in a crowded room you are responsible for the mob. If you perpetuate stereotypes, even as a joke, you have the freedom to do so but not the right to cry foul when others find fault with you. Who has the brittle spirit, those that survive or those that simply deride?