A WINTER PRAYER

Hate cannot drive out hate, only love can do that. 

Martin Luther King Jr. (from Strength to Love)

Dear Persons,

It’s easy to grow bitter. Sure, if you have a child with special needs, losing faith in this world is often tempting; but in this divisive political climate being human is an indicator for general angst. So yeah, we need help. Here is my Winter Prayer to the Universe, the One Song we all share: 

Dear Universe,

As the days grow colder and shorter,  may the extra darkness offer rich soil for growth. May the falling temperatures allow us to, um, appreciate the warmth betterer? 

May there be less wintry mix precipitation and black ice and more coziness and sparkle. 

How about no black ice.

May those entrusted with our children (Betsy DeVos, I'm talking to you!!!! [Oops, did I write that out loud?]) actually have their best interests at heart. 

Likewise, may those entrusted with our only home, Mother Earth, do the same, dear Universe. 

May we - in the waking hours we can muster this season - find the strength, energy, and time to be there for each other, and to find the resources we need to advocate for and nurture our differently-abled children, selves, family, and loved ones. 

May we learn to ask for help when we need it. 

Before we judge, may we consider the possibility of unseen struggles, mental health issues, “invisible disabilities”…

May we learn not to take things personally, even as we refuse to countenance injustice. 

Can those “All Lives Matter” people make a Black friend, please? 

Might we send a contingent of willing trans persons as ambassadors of queerhumanness to all places showing evidence of small-mindedness around gender? 

Let’s get some drag queens in there, too. They could bring cupcakes from Scott Cakes! And warm coats!

Please sprinkle in some other people with differences that differ from the “norm” in these places (in whatever ways: religion, ethnicity, citizenship status, ability, sexual orientation…), bearing, perhaps, free kids’ books about diversity and inclusion, in order for peoples’ definitions of people to expand. 

Actually, can we have all of these individuals bring their families — whether of origin and/or orientation — as part of their delegations? Can we? And then partner each family with a local family, have them plan and cook a meal together,  and give them a discussion agenda that includes favorite funny movies, animal heroism stories, and, I dunno, high and low life moments? 

Thanks! Because it seems to me that when people see people as PEOPLE it becomes nigh impossible to hate. 

And, just a thought, can we get some people on the spectrum on this whole tax reform thing? Because some of us are pretty good with numbers and our “literal,” “black and white thinking” around, you know, the math aspect might be a strength for the future of U.S. civilization in this particular context. Do you want to know whether a particular change to the tax code will benefit the economically disadvantaged or the middle class? We can actually tell you. 

Come to think of it, may there be progress, however incremental, in people being fairly paid.

Also? The men in charge right now…could they be immersed in a crash course in menstruation, harassment, gender discrimination, childbirth, and motherhood? Also also, working and single motherhood? Thanks. REALLY - thanks. 

Bonus: In fighting injustice and working to empower others, may we never degrade or forget the humanity of all concerned. (That’s a hard one sometimes - healthy anger fuels change while destructive, vengeful rage destroys lives.)

See, because either we are engaging or we are withering. Bitter. And you know what? Bitter people are often cruel. I know this all too well too.

May we hold our loved ones close, knowing that life can be all too fleeting. May we make every day count, even the *&^$ ones. 

Dear Universe, we all cry the same salt tears. May we also have the mental and emotional space to see the beauty, joy, courage, and kindness that coexist with the hard stuff. 

May we retain our hope and faith. May we regain our hope and faith. 

May we find strength through love. 

Love,

Full Spectrum Mama

P.S. What are your prayers, dear reader? Feel free to share them in the comments below, or email me at jineffable@gmail.com.

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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SHOULD I HAVE SAID SOMETHING?

“Speak your mind, even if your voice shakes.”

- Maggie Kuhn

Late October. I am on a walk with my puppy, who has just been diagnosed with Lyme. I stop to chat with an elderly neighbor, and we get on to the topic of tick “prevention” meds, veterinary care in general…She knows I am a writer and editor and tells me I “should have been a vet - what with the cost of tick medicine…” She says her granddaughter wanted to be a vet but “instead works with autistic children,” and, “What a mistake! It would’ve been easier to work with animals!” As I often am in such situations, I am, briefly, paralyzed. I wonder if I should say something. And I choose not to do so. 

For one thing, my neighbor is elderly and I don’t want to seem confrontational. For another, I sometimes get tired of always having to explain things and advocate; I save that energy for where it really matters: primarily for school, family and close community, and for thinking about and researching G’s future options… 

Later I realize it seemed like it would have been an “easier” choice if she had said “women” or “Chinese people” instead of “autistic.” But it’s NOT. In some ways, there’s a big difference between a casual statement by a neighbor and bullying or discrimination…But in a very real way these are all on the same continuum. 

Dear Persons, I can think of so, so many similar instances when I have said something about injustice or discrimination or stereotyping and some where I have not . Times when I have been angry and said angry things. Times when I have been bullied for standing up for my child. Times when I have been articulate, convincing, empathy-inducing. Times when I  have been speechless, like when someone yelled a racist slur at my daughter, or just plain confused. It can be scary to speak up, and, although I usually don’t lack the courage, per se, my sensory processing differences (SPD) can mean that when I feel scared I can’t also process a coherent thought/response until after the moment has passed…

And then…the election. Even my readers abroad know which one I am talking about. 

This is a moment in history when it is important to be very clear and so I want to say something here. Here is one place I speak up, always. I cannot separate out whether my stance comes from having one child on the spectrum and one child who is a person of color (and many family members and close friends of color and/or of non-hetero orientation/identification and/or on the spectrum and/or of non-Christian religious affiliation…), but my stance and our stance as a family is very simple:

The Full Spectrum family stands with all people of color and the Black Lives Matter movement. We stand with the First Nations of the world in their struggles for recognition, sovereignty, and protection of lands. We stand with our brothers and sisters on the spectrum, our disabled brothers and sisters, our differently-abled brothers and sisters, our diffabled brothers and sisters. We stand with our immigrant brothers and sisters. We stand with our Muslim brothers and sisters. We stand with our Jewish brothers and sisters. We stand with all women, as well as with LGBTQIA communities, with all people who believe in equality and the right to choose who we love, who we want, what happens to our own bodies  - and, further, we believe in equality and the right to choose even for those who don’t agree with us. 

We stand with all oppressed peoples, as well as with all people with financial, white, or other privileges who believe in equality and use their privilege(s) for good. 

This goes beyond wearing a safety pin, attending protests, and writing postcards as part of the Local Love Brigade, to being willing to open our home and beyond. When they come for you, when you need solidarity, call us to your side.  

Would we hide you? Yes. 

This is one time our black and white thinking serves us: there’s no room for equivocation here.

We families who have significant differences from “the norm” are used to standing up for ourselves - and, often, others. We might sometimes be tired, but we are experienced advocates, sometimes to our own surprise. These skills are especially important now, as we see hate crimes and discrimination on the rise, and ignorance being celebrated.  Sure, many will not listen or truly hear us, but some people will, and that makes our efforts worthwhile.

Figure I - Not Saying Something vs. Saying Something

Should I have said something? Yes. Next time I will, even if it’s hard, even if I’m worn out, even if my voice shakes. 

I hope you will, too.

Love,

Full Spectrum Mama

P.S. Coming up in my next post: ways to say something!

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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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