Tuesday, November 8, 2016

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: 



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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