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

THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:

#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,

Full Spectrum Mama