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

What the &$#@ were they thinking?

autism, mental health, parenting

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

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

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

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

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

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

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

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

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

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

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

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.