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...

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!

An InLinkz Link-up

Ignorance Ahoy

In this time of pain and grief and uncertainty I'd like to say, Thanks, local paper, for perpetuating rampant stupidity:

Re: "Windham County schools helping students cope," by Howard Weiss-Tisman, 12/18/12

To the Editor,

As friends, parents of and/or persons with autism spectrum diagnoses, we would like to clarify some important and potentially damaging aspects of Weiss-Tisman's article. 

He wrote,  "...the alleged killer, had Asberger's [sic] syndrome or some other personality disorder, it was important not to draw conclusions, or make assumptions abut [sic] other children who suffer from mental illness."  (http://www.reformer.com/localnews/ci_22212875/local-educators-respond-conn-killings)

Aspergers syndrome, following the publication of DSM5a to be known as an autism spectrum disorder, is definitively neither a Personality Disorder nor a type of mental illness. 

Persons with autism are in no way more inclined to violence than the average population; in many cases and in our own experience they are among the most gentle and emotionally empathetic people we know. In fact, persons with autism are significantly more likely to be Victims of violence than to commit it.
We support The Reformer's and all efforts to increase school safety. Our thoughts are with those who were impacted by Friday's terrible events. Let us be sure not to add tragedy to tragedy by perpetuating negative stereotypes around mental illness or autism. 

We ask that you publish this letter so that people in our community will not be misled into harmful and erroneous ideas about autism.

Sincerely,

[FSM, friends, family]

A Summer Idyll, Full Spectrum Style

This little vignette shows how Full Spectrum parenting is full of teachable moments...for Mama!

We have a decent swimming hole about five minutes’ walk from our house. We went there the other day when Z was just in a mood. Mama was not in the mood for this mood. 

So it wasn’t a great combination.

As G swam happily, Z threw sticks into the muck of a small rock pool and shot copious gratuitous dirty looks my way. I jumped in and joined G for a while, trying to enjoy myself despite one-third of our party being in a snit, and then slid out and approached Z.

“If you want to go swimming, now is the time,” I remarked.

From the water, G made encouraging river otter sounds and tried to make Z laugh.

She ignored him.

I am always hoping these two Spectrum opposites can be “therapeutically” complementary to one another. Z might help teach G how to relate to someone who is socially savvy (for instance, getting him accustomed to mild, good-intentioned ribbing); or G could show Z that being generous (i.e. taking the smaller piece of pie) isn’t a sign of weakness. Sometimes it feels like quite the opposite is occurring. At the river, G was being sweet and blatantly making himself vulnerable to rejection and it wasn’t swaying Z’s tough stance one iota.

My Great Grandmother Noni, a widowed mother of a huge family and a fantastic and irreverent and loving woman, gave her children the following sage parenting advice: “Don’t see everything.”

I had seen Z’s sourpuss and her unwillingness (inability?) to respond to G’s overtures and I just couldn’t take the rudeness.

“In this family we treat each other with kindness,” I snapped. “Period!”

As Black and White and Spectrum-y as I can be, I have to wonder whether some of the moral boundaries I set for my family fit the individuals concerned.* I am always telling G, “Use your most powerful [pokemon-style] move: Ignore!” when he feels that Z is tormenting him, yet here I was denying her the right to this mighty move – and big-time incapable of it myself! Maybe the kids were learning from each other in ways that weren’t so obvious to me; maybe I should have simply accepted – “not seen” -- the interaction and, as Noni’s son-in-law (my Grampy) used to say, “Leave it lay where Jesus flang it.”

Is it true, as a dear friend recently told me, that for parents the acts of holding a moral center and loving unconditionally are irreconcilable? If so, which do I value more?  As with many in my raised-by-busy-boomers generation, I felt at times a dearth of both in my upbringing.  Am I now, in attempting through the ways I treat my children to right certain wrongs done to me in those realms, thereby inadvertently creating other wrongs?

In a word? Yes. (At least becoming a parent sometimes helps us to better understand and empathize with our own parents!)

Home we walked, Z stomping and screaming the entire way. I could not carry her, because I was walking her bike. G, though, was on his bike, and I very reluctantly let him ride away from the ruckus. Since Z’s walk-yelling slowed us down, G got home maybe four minutes before we did.

He awaited us at the very edge of the driveway. Hesitantly, looking slightly uncomfortable, G asked, “Did that woman give you my message?”

“What do you mean?”

I looked over at my filthy car: “Help, my Mama is gone” was written in the dust on the back hatch.

But Z was radioactive and I needed to get her inside. A public tantrum can be remarkably depleting for all concerned. Safely in the house, she proceeded to glower her way through dinner. She lost the privilege of dessert after refusing to respond to basic queries and jovial repartee. After several further chances she also lost the popcorn, DVD, and nightly reading of Harry Potter privileges and was banished to the bathroom to prepare for bed. Which she also refused to do. As I was lifting her onto the toilet in the hope that she would deign to use it (channeling Xiao Chuan Ayi all along: “You know what? Now I am going to have to lift your body onto the toilet,” stated very, very dispassionately), she pulled hard at my thumb and I heard, through the din, a ripping sound.

Z had torn a ligament in my thumb.

Funny how one can painstakingly remove oneself from all sorts of negative situations and then find oneself feeling violated by a small child in the home that houses you both. As Z gets older, the violence of her tantrums is increasing, along with her capacity for destruction. Still, there is hope here: she seems to be gaining more security and so is tantruming somewhat less frequently while enjoying more healthy reactions overall.

I can imagine a time when Z will have learned to calibrate and refine her social persona to the point where her behavior – at least in public -- is entirely ordinary.

As for G, I am not so sure. It turns out that while he had been waiting in the driveway for us to return from the swimming hole, he had run out into the road and flagged down a car to tell the (female) driver that his “Mama had disappeared,” and asked her to “please, try to find her, and tell her that I am looking for her.”

In subsequent conversations G admitted that his actions had not made a lots of sense, considering that he had seen me mere minutes before at the swimming hole and had known Z was having a colossal tantrum. He just could not put all the relevant information together through his anxiety. Perhaps this was a Theory of Mind** Moment.

Come to think of it, a woman had slowed way down and peered at me in a strange way as we were walking home.

And here I’d thought she had given me the look because of my beet-red, wild-haired, screamin’-like-a-banshee daughter!

Love,

Full Spectrum Mama

*  I love this quote from The Autism Revolution, by Martha Herbert, MD, PhD with Karen Weintraub: “I’d rather spend time with someone who is interested in me than someone who is trying to fix me or always telling me to do stuff that doesn’t make sense” (p. 162).

** Theory of Mind is a philosophical/psychological concept that is sometimes used by neurotypical theorists to describe some expressions of autism wherein an individual may be – or seem to be -- unable to project or attribute mental states beyond his or her own to others.  Here, one might say that G was unable to conceptualize where we were if we were not at home with him  (as we should logically and historically have been). This theory, though, can be turned around to accuse neurotypical people of not having a Theory of Mind that would fit in a more autistic-centric world…

If you do go to this link, please read to the bottom of the autism part, where you will find a more nuanced view:

http://en.wikipedia.org/wiki/Theory_of_mind