KOANS FOR PARENTING TEENS I-IV

Dear Persons,

The Oxford English Dictionary defines a KOAN as “a paradoxical anecdote or riddle, used in Zen Buddhism to demonstrate the inadequacy of logical reasoning and to provoke enlightenment.” 

When I am faced with questions I can’t answer, I often reframe them as koans, in order to — yeah, basically — make myself feel better.  Also, laugh. (Also, cry.) 

Teenagers provide ample opportunities for koan construction, let me tell you — never mind parenting teens with differences…

Here are some recent koans I’ve developed: 

I.
If your neurodiverse teen stays out late for the first time and then sleeps past their usual 5:30 am. wakeup…is that Self-Regulation?

II.
If micro side-eye is smaller and quicker than regular side-eye, can it still be worse?

III.
If a peer invites your developmentally different child to do drugs or vape…is that Good? Or Bad?

IV.
Why is being weird weird, but being mean isn’t weird? 

Love,
Full Spectrum Mama

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WE ARE THE CHAMPIONS

Dear Persons,

The recent news of an autistic boy named Chase Coleman being assaulted during a cross country meet, essentially for being Black and autistic, broke my heart. G runs cross country, and although G is not Black or non-verbal I share many of the concerns this boy’s mother had, such as worrying about G getting lost during meets. G’s Sensory Processing Differences (SPD) and other challenges can make running cross country distances and trails a minefield for him, yet he keeps trying, usually with a smile. He also hasn’t digested some of the central customs of the sport, such as being at the starting line with his number pinned to his uniform (don’t ask). 

Like Chase’s mom, I attend all of G’s meets, because I am immensely proud of course - I am sure Chase’s mother believes her son is a real champ, as I do…But I also go to every meet because I want to keep an eye on things.…make sure everything goes okay.

My daughter, Z, also runs cross country in her elementary school. While I try to attend all of her meets as well, I don’t worry about her in the same ways - at all. East Asians (she is of Chinese ethnicity) are not stereotyped in the same ways that people of African descent are, so I don’t worry about her being targeted as a threat (though I do worry about her vulnerability, as most parents of daughters do…). She’s fast as heck and has a great sense of direction, so I don’t worry about her losing her way or her “performance” or confidence…

She’s celebrated on her team, where it sometimes seems my G is merely tolerated. 

You know…the Full Spectrum.

Back to Chase. I was having that feeling that some readers will find familiar where you suspect your child’s very real efforts are not being appreciated, so I decided to write G’s coach a letter (below). I’d just finished writing it when this hit the news: 

Autistic black teen got lost running a 5K — and was assaulted by a man who feared getting mugged - Washington Post

Rochester cops revisit attack on Syracuse teen runner with autism - Syracuse 

Chase was just standing there - and he was attacked! In “self-defense.” As it happens, I have many close friends and family who are people of color and/or autistic. But I like to hope that just because one isn’t related to or close friends with a certain “type” of person doesn’t mean they are “suspect.” Chase’s story reminds me that DIFFERENCE reads, to so many, as DANGER. Thus, children with differences are vulnerable, perhaps none more so than black male children. 

Does it have to be this way? Must difference lead to ASSUMPTIONS? And why are those assumptions usually negative? Let’s just be very logical here: how can a SKIN COLOR or DISABILITY be THREATENING…unless  wholly through ignorance?

And what, exactly, do we mean when we use the word DISABILITY? Believe me - I know it’s complicated. But I’d like to focus on one aspect vis-a-vis Chase Coleman, and my G: For one thing, a difference BECOMES a disability when one is seen as less than, or treated as such, or denied opportunities or inclusion or even basic assumptions around shared and equal humanity BECAUSE OF THAT DIFFERENCE.* 

I know this is a broad definition of disability, but it comes from my and my family and loved ones’ lived experiences. Differences such as SPD and autism are often called “invisible” disabilities, where being Black is (usually) not invisible….Nor is being Black known as a disability per se. But by the definition of this one aspect of disability I am discussing here it may certainly be experienced as such. 

In this context, a disability is something that prevents someone from living their best life, from being their best self, from full self-expression or activity or participation…NOT because of any quality inherent to their being (neurology, skin color, gender, body type or shape, intellectual capacity, LGBTQ status, nationality, ethnicity, age, religion…), but because of the way their environment is designed (for “normal” people) — or because of the attitudes - including ignorance - of others. 

How wrong is that? 

We, in our communities, need to find ways to celebrate difference, not squash it. We need to help one another see each other as human beings, united in this crazy, hard, wonderful, awful, confusing thing called life. Be curious about each other, rather than thinking we KNOW already who others are because of appearance or labels.

WE need to be Champions of acceptance, understanding, inclusion - for ALL the different kinds of Champs out there!

Dear Readers, if we will not be the champions, who will?

On this deeply fraught election day, where so much is at stake for immigrants, women, people of color, ALL OF US…Here’s one tiny way I have tried to explain G’s differences to so that his unique strengths and challenges will be seen: 

Dear Coach,

I wanted to thank you for working with [G] this fall, for pushing him and expecting the best of him. He has improved immeasurably (from 39 to 27 minutes - and I think he may even do better at the state meet!). He has also grown in confidence.

I wanted to fill you in on a few things about [G], in case they are unclear. You may think he is not taking things as seriously as he should or not working as hard as he can or being as responsible as he should...

As you know, [G] has asperger syndrome. Everyone with asperger syndrome is unique, but some of the aspects of it, such as social and motor challenges, are shared by many. 

[G] has something called low muscle tone. This means EVERY physical activity is harder for him because his muscles have to work much harder than they would if he had average or high tone. I'm sure you know what this means, as an athlete yourself, but you likely don't know what it actually feels like. I do - because I had low tone myself as a child. 

Everything my athletic family did (biking, running, soccer) was practically torture for me. In those days no one knew about this stuff. Anyway, I became very athletic over time and somehow overcame that disability.  I have "normal" muscles now for the most part and physical activity feels enjoyable - **completely different** from how it felt when my muscles didn't work efficiently or well. I think this will happen for [G] too, but I speak to you as an athlete who once struggled as [G] does: please understand that running is Literally harder for him than for the other kids.  He's not exaggerating or making drama.

Also, [G] has many motor skills and balance issues. It's very brave for him to get up again and again when he falls many times, sometimes quite badly, every time he runs. I know other kids get hurt from time to time, but [G] is getting hurt practically EVERY time - and he's getting up again and running again. 

It's also a mixed bag that he feels humiliated when he falls. On the one hand, it's actually social progress for him to realize there is a humiliation factor in falling. At the same time, he now has to weather that humiliation in front of his peers, for things that are out of his control (motor skills, balance). I know his teammates are supportive, but he still feels bad. So it's DOUBLE brave for him to get back out there with both physical and emotional pain.

Finally, I know sometimes [G] can seem flaky, but this is his central disability right now: a lack of executive function. I am less surprised when he misses the bus for a meet, or leaves a shoe (WITH HIS PHONE IN IT) in the port-a-potty where he changed into his uniform, than when he remembers, every single day, his water bottle, his school clothes, his phone…

I want to share with you that the [G] you are seeing mostly keep track of bus times, his stuff, transitions, etc. could never have done this even a year ago. I am happy every day that he keeps track of his stuff. I know it's a "normal" thing to do, but for him it's a huge leap - something that gives me enormous hope for his future.

So even though I know [G] is one of your slowest runners, to me he is a true champion and I am beyond proud of him. Thanks for being part of this amazing growth for him.

Sincerely,

[Full Spectrum Mama]

Thanks and Love, Dear Readers…Now please go VOTE,* if you have not done so.

Full Spectrum Mama

* For a small dose of perspective on just how good humans are at judging the worth of different kinds of people, consider that women in the United States did not have the right to vote until 1920. Yes, 1920!!!! Less than one hundred years ago...

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PLEASE DON’T SAY YOU’RE SORRY...

Dear Persons,

Please don’t say you’re sorry when I tell you my son is autistic.

It’s like telling me you are sorry that my child is Black, or female, or was adopted: just plain wrong. Sure there are things about being a woman or person of color or autistic or having been adopted that stink, but none of them are intrinsic to the person living those qualities. They’re judgments and discriminations that are inflicted externally, not – at least not originally or inevitably - embodied.

My children are veritable rainbows of their own unique glory, neither defined nor necessarily limited by any one particular trait.

Just like everybody else.

Figure I – Veritable Rainbows of their own Unique Glory (with Partial Labeling for Instructional Purposes Only)

That is all.

Thanks and love,

Full Spectrum Mama

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

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DEAR PERSONS

Dear Persons,

Z has always laughed every time she hears or reads the word “persons.”

I finally sat her down and explained to her that “persons” is a word that has a deep and complicated history. That personhood was for many millennia and in many places reserved for only a certain type of people, such as men, or landowners, or white people, or people of a certain caste or religious faith or neurology...

I explained that even though it might seem silly or old-fashioned when you read or hear that word, it’s a strong word that carries a lot of goodness and respect. That she, as a female of Chinese descent, might -- in many settings over the course of history --  not have been considered a Full Person. That even now she will not necessarily earn as much as a man, or be accorded equal respect.

We are reading Malala Yousafzai’s autobiography, I AM MALALA, together, and she is learning how hard life can be for girls and women in many parts of the world. She has already experienced instances of racism at school. Knowing she’s a Full Person gives her grounding and power to stick up for herself.

This conversation inspired me to begin starting my posts with “Dear Persons,” because my readers are dear to me, and because they are all Full Persons.

Love,

Full Spectrum Mama

ARGHERS AND ACTIVISTS

Hello, my name is Full Spectrum Mama and I’m an Argher and an Activist.

I’ve been politicized by having “different” children, but I suppose I was pre-politicized by being “different” myself. In the family I grew up in…well, let’s not get into that. Let’s just say it took me a long time to realize that speaking up when something is wrong is not “having a victim mentality!” It’s about seeking justice. Speaking up does not make you the bad guy. It makes you an Argher and an Activist.

The “Argher” label arose when my Meeting Friend and I were commiserating over an injustice and I thanked her for the pleasure of feeling like we always understand each other and she replied, “I can argh with the best of them.”

Well, I appreciate that a great deal!

People with obvious differences from the “norm” and/or the majority  – those with visible physical differences, differences of demeanor, skin color differences, some trans people… – don’t have a choice about being noticed. Sometimes that “noticing” takes the form of bias, discrimination, bullying…

People who are activists for animal rights or political justice or against other injustices may be activists for causes that are urgent, but they have a choice.

In any case, there IS injustice in the world.

Sometimes what we need when life deals injustice is someone to say “Argh!” with us. And that can be enough. Actually, we almost always need a fellow Argher -- at the very least to understand and empathize.

There are several sorts of Arghers:

            The CO-Argher, who shares your situation;

            The WITH-Argher, who just completely Gets your situation;

            The GENERAL-Argher, who is compassionate in every way…

…We will not deign to discuss the ANTI-Arghing-Argher, who wants the other Arghers to can it, pronto.

Our fellow Arghers make life bearable when something feels very wrong. But, often, we need more. The “Activist” label arose for me when stupid stuff happened & I chose to call people & institutions out on their discriminatory behavior. Activists seek to be catalysts for change, because the status quo is often unacceptable.

Arghing is private, but Activism is public and often elicits resentment. People generally want Activists to keep quiet and go away so that they don’t have to be inconvenienced by accommodating the equality of ALL.

So—rry.

Activists may be sorted into similar categories:

The CO-Activist, who shares your cause (just about everyone I know who has a “different” child has been shunted into Arghing and/or Activism. As a parent, one basically has no choice);

            The WITH-Activist, who just completely Gets your cause and supports it;

            The GENERAL-Activist, who is justice-oriented in every way;

The ANTI-Activist, who finds Activists burdensome and pesky.

Liminal people – minorities, people with differences, etc. – often have way more encounters with neurotypical, gender, economic, racial, normative or other privilege. If a given liminal individual (or their parent or partner or other loved one) is strong/brave/privileged/foolhardy enough, he or she may choose to speak up about injustice.

For many reasons, however, we don’t always say something, whether through public Activism or private Arghing. Some of us are non-verbal, some of us are shy, some of us are scared, some of us are tired, some of us are cynical, some are resigned…

We DO always feel it, though; of that you may be sure.

What happens, then, is that those of us who by virtue of our own and/or our children’s and/or our loved one’s differences see more injustice and choose to address it sometimes find ourselves in these positions:

“rebellious” people of color,

“uppity” women,

“whiney” people in poverty,

“annoying” disabled people,

“shrill” queers…

A.k.a., Arghers and, perhaps, Activists!

The funny thing, vis-à-vis the people who resent Activism, is that the kinds of Arghing and Activising that I am talking about are long-term beneficial to ALL. Sure, it might take some stretching on the parts of certain individuals and institutions. The “privileges” of inequality from which some benefit (and others suffer) may be hard to relinquish, but I cannot hope but believe the rewards would be more than commensurate. Truly, what do we ultimately have to lose by being more inclusive as individuals and communities??

Ideally, as painful as they are, these experiences of talking about and struggling with and negotiating over and even experiencing injustice make us more fully human, more empathetic to others.  Once we have experienced injustice, we don’t want ANYONE to suffer.

Take, for example, Hedy Epstein, the 90-year-oldholocaust survivor arrested for protesting against institutionalized racism and violence in Ferguson, Missouri last month. My instant take on hearing about her was: OF COURSE: She has experienced and recognizes injustice…She cannot stay silent, having once escaped being permanently silenced.

She, too, is an Argher and an Activist.

We can be proud to share her proclivities!

Love,

Full Spectrum Mama, A. & A.

For V-Day: Daughter of Power, Daughter of my Heart

Today we celebrate V-Day, a day to come together and give voice to the global movement to end violence against women and girls. Today, I, as a mother, celebrate my strong daughter, in the hope that she will never suffer violence to her body or spirit. 

Z, a.k.a. Shorty Tai Tai,* can be pushy. She’s always first in line, getting what she wants, being where she wants to be. She doesn’t value self-effacement, and she doesn’t mind shoving to get to her desired destination. We have a lot of interactions where we probably aren’t quite seeing eye-to-eye on some basic issues around taking turns, or giving instead of taking. It’s hard to tell how much of Z’s powerful behavior is attachment-disordered (controlling, hoarding) behavior and how much is personality-driven.

Anyway, she is a child of power.

Over time, though, I have come to love that my tiny daughter (she has stretched into the 15^th percentile in recent years, up from off-the-chart itty-bitty) has such authority and strength. She’ll need it in this world, where racism and sexism still prowl.

Here are some recent incidents of Z-power:

Walking home from school:

“Mama, I did something kind today.”

“You did? Great! What was it?”

“When it was somebody’s turn in line ahead of me, I let them go!”

At the dinner table:

I asked Z if she would support us when she is very rich and powerful someday, just joshing around of course, and she said, “Ask me another time.”

Waking up in the morning:

“I woke up and I just thought, ‘I am going to choose to be good the whole day at school today!’”

“Wow…The WHOLE day?”

“Yes!”

“Doesn’t your teacher have something to do with that?”

“No.”
 

“So…it’s just up to you?”

“Yep.”

            At lunch at school:

Two boys were teasing Z, saying that she was “weird” because she had hummus in her lunch.

She stood up and told them, hands on hips, “Don’t yuck on my yummy!” Having asserted herself and resolved the situation to her satisfaction, she marched over to the teacher to give a full report. But only to let her know what was up, not because she needed anything!

Safe to say those fellas are no longer “yucking” on anybody’s “yummy.”

Although I cannot applaud Z’s corny turn of phrase, I was reassured that in the rare instance that anyone dares to give her a hard time, she’ll be ready for it! Z came home pretty upset that day, but not because she had been put down. She’d already embodied the advice I had in my motherly tool kit: that she should never let anyone treat her with disrespect. She recognized unfair treatment and stood up for herself. In our home, in her school, and in every way I can, everywhere I can, I mean to make sure she continues to do so.

I used to wish that as Z healed, she wouldn’t need to exert her power so constantly. Now, especially on this V-Day (http://www.vday.org/home), I hope for her healing AND for her continued power.

Go Shorty.

Love,

Full Spectrum Mama

* Tai Tai: literally: “great great” – the Mandarin term for Madame or Mrs.