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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!

An InLinkz Link-up

TEACHABLE MOMENT

WE ARE NOT YOUR TEACHABLE MOMENT

We are a Colorful Family. When we are out in public, we are usually the ones people are looking at. Because we are unusually attractive. OR, perhaps, because one of the kids is usually doing something "interesting" and one of the parents (usually me - Pardner is a chef, and chefs quite a lot) is usually doing something "creative" to try to channel the "interestingness."

I’ve realized over the years, because I find myself staring when I see families with differences or public challenges, that some people—like me -- look on with identification and empathy.

Some look with scorn and judgment (those guys don’t even deserve this sentence).

But the other group consists of the ones who want to use my family to teach “tolerance” – which feels a little condescending -- or those who (much better) are aiming for respect and acceptance, whether of neurodiversity or ethnic diversity or any other inclusive impulse…

Um, may I just say that being anyone’s “Teachable Moment” can be a wee smidge annoying? But okay, I get it, people.

So here’s my Lesson Plan for this Teachable Moment:

                                           Figure I – The Full Spectrum Family Lesson Plan

Guess what. It's a spectrum. Is yellow "better than" violet? No. Red vs. green: who wins?

Nobody.

Neurotypical's not better than neurodiverse -- and vice versa.

White? Brown? Peachy keen? Melungeon? Different?...Equal.

Orange? Blue? Indigo? Sensitive? Impervious? Female? Male? Trans? “Normal?” Weird?” Can’t tell?

Equal.

Please think carefully before you approach us just because one of us is brown and might not be “mine,” or because one or two of us seems quirky…unless you do so under an equal and inclusive flag.

Whatever we are representing to you, it’s probably not our "fault." It’s not even necessarily that interesting.

There's nothing wrong with us, or at least no more than there is with any other given family. And we all need to learn to get along. Best we do so with the basic assumptions that no one is a specimen and that we are all equally valid members of this funky human rainbow.

Thanks – I needed to get that off our Spectrum.

Love,

Full Spectrum Mama

An InLinkz Link-up

DIFFERENT

I recently read a book review by a person with sensory processing differences bemoaning a new compilation of essays by people on the spectrum as basically all stuff she’d heard before. It’s true: so many blogs and books are about similar things. Still, as a teacher (of yoga as well as academics), I know full well that it can take a lot of repetition for things to get through to people.

Another point in favor of repetition: Sometimes hearing things slightly differently, or from a different source, makes all the difference. I still remember the first time I really heard a yoga teacher say, “breathe deeply,” despite the fact that I’d probably been instructed to do so a bajillion times before. A particular iteration just might be the one that - finally, truly - gets through to someone.

As well, I applaud the normalization of the conversation itself! Another post about why someone needs earplugs or a weighted blanket or a sensory break?…Sigh? Or be glad that these adaptations are being integrated into the realm of “whatever” (as opposed to “weirdo-land”)?

In that vein, I offer my take on families and friends learning about difference:

A friend posted this question on facebook:

 ·

Hey friends, I'd like to know how you talk to your kids about people with intellectual and developmental disabilities. I'm finding the "difference" language, which I generally like and feel is empowering, to be somehow problematic.

[Her son]  knows that there are lots of ways people can be different, that some people are born different and some people look or act different because of something that happens in life (like veterans who use prosthetics). If I know someone's diagnosis (like Down's Syndrome), I use that in a matter-of-fact way, explaining what it is and how it happens.

The issue is when I don't know what someone's difference is diagnosed as, but I want to talk about that person with [son], so he can be sensitive to them. I want him to know it's okay to ask me any questions he might have. I don't see how he can stand up to any bullying of kids who are different if he thinks it's something so shameful we don't talk openly about it.

Thoughts? Advice?

Here’s what I said [combined and slightly edited for clarity]:

Great question and obviously one we deal with for a variety of reasons and in a variety of ways in our family. I do agree that a matter-of fact attitude is so important in most observation of others. Anything from "Oh, so and so sometimes shouts," to “Yup, looks like that kid has only one arm…” to “Yes, some people think it is important to wear clothing with a brand name on it,” can be shared in a neutral and implicitly inclusive way. There might be some judgment or question appended – “Does that hurt your ears?” “Do you think brand names are important?” “How do you think she feels if people stare at her?” –  that is likewise implicitly inclusive in that it does not intentionally refer to the “normalcy” of the observed trait.

One major caveat when it comes specifically to “disability:” Many people one might label as disabled might disagree with that label. They might feel they are differently-abled, or even superiorly-abled, or completely normal in their own way….

Because there are two key underlying things here:

how people see themselves

and  

how they are seen by others.

Obviously you want [your son] to know that all beings are worthy of kindness and respect (I hate "tolerance" [although I know it's meant well in theory, I find it condescending in practice]) including himself (who, as a male of color, will have his work cut out for him in some arenas...). This kindness and respect model encompasses both how he sees himself and how he sees others, and naturally integrates how others themselves might want to be seen, right?

What I try to convey is that Everybody is different...and everybody is equally worthy of kindness and respect. Having an autistic kid and a kid of color that's already been kind of an inevitable issue and we have our teachable moments at home as well as on the town. Sometimes they are painful. (And, by the way, there are those rare exceptions to these ideals of neutral observation and kindness and respect for all: those sorry-as$ people who do not treat us or others with kindness and respect [because they are “hurting in their hearts”] need to be treated with kindness and respect from a very long distance…)

I guess this is a long-winded way of saying:

if Everybody is different,

then "different in the way her mind [body, etc] works" or "from a different

culture" (or whatEVER)

becomes simply one difference among an infinite realm of possibility.

It’s a pretty ordinary point for those of us accustomed to daily life with “extraordinary” differences in our midst. But the implications are grand: with everybody being different, there is no homogeneous “normal” against which we all must be judged.

Love,

Full Spectrum Mama

EIGHTY-SIXED

My daughter has an attachment disorder. When she is anything but entirely comfortable she talks constantly, animatedly and without ceasing.  My son has aspergers syndrome. He talks at high volume in an unmodulated voice.

In other words, my children are sometimes rather LOUD.

Consequently, we don’t spend a whole heck of a lot of time in restaurants.  But the other day we had a family date with another mother and her aspergian son and her peppy daughter and, sure enough, the table next to us complained.

See, we had thought we could have a peaceful night out with the kids.

We had walked into the restaurant and immediately seen a large, multigenerational family in the big center table. They’d smiled big, friendly, relieved smiles to see us. They knew we, with our four potentially rowdy elementary school aged kids, would balance they and their two little guys right out. 

But we all knew we’d all be trying to keep our children as well-behaved as possible for the comfort of other diners…

Our sons were excited to see each other. They began putting on raucous, clearly innocent and dorky (vs. aggressive or obnoxious - and why do I feel the need to point this out?) plays with their chopsticks. This friendship has been a beacon of hope for both boys, who struggle socially in their own schools.

Our gals were excited to see each other, chatty, berating their big brothers for being “annoying.”

Maybe four minutes after we sat down, a server approached our table. She was super sweet: “We don’t mind your kids at all but another table is very upset…” They informed us we were welcome to eat in the other part of the restaurant. The closed part? That is usually unused?

We knew it wasn’t her fault and agreed right away, trying to leave as little mess behind as possible, taking our glasses etc. with us, faces burning.

Someone from the other family asked what was going on. Looking straight at the offending table, I informed the nice family in a clear, LOUD voice that someone had complained about our children, despite the fact that they were being relatively well-behaved. I explained that we had to move to another room.

There’s a ferocity to motherhood that once made polite, feminist me hiss the B word at a woman who sniped about my letting my young child play under the table at a restaurant (at the time he'd been diagnosed with a sensory processing disorder and I knew he was overwhelmed by restaurant stimuli). ...A protectiveness that had me retorting “What are you whistling at? You better not be whistling at my baby!” at pregnancy catcallers.

As well as that loving ferocity and protectiveness, there is a sadness when someone judges your child on his or her appearance or on other inevitable aspects of their being. Doesn’t acceptance start in the little things? Allowing children to make a little noise? Reach for their Skittles? Be included even if they are a different color or neurology or different ^$%@%^% ANYTHING?

Don’t ALL children learn through having opportunities to broaden their experiences? By moving outside of their homes and their neighborhoods to restaurants, different streets, neighborhoods, cultures??? Don’t they deserve as many chances to grow as we are able to offer them?

Children who are held to basic standards of kindness yet allowed to make mistakes in the niceties without dreadful repercussions may grow up to be accepting, no?

Post the Zimmerman verdict, I listen to my friends with sons of color talking and writing about how they instruct their sons: “Don’t act suspicious,” “Stay quiet,” “Keep your hands visible, “Don’t make yourself a target”…

A week ago I might’ve ventured to hope that we were moving away from the necessity for such admonitions.

How far are we willing to go to keep our kids quiet? How far to keep them safe????

Acting “erratic” (G) and dining out while brown (Z) are definitely things I see in my kids’ futures. I want them to feel welcome in the world nonetheless! I thought taking them to a restaurant would be a good thing, but our good thing almost got eighty-sixed along with us.

Do you think, stern people of the next table, that we have not tried to have our children fit your behavioral standards?  Do you not think we are doing our best and maybe occasionally deserve the right to go out and eat dumplings?

See those first few sentences of this post where I define my kids as their conditions? You, next-table chumps, have just gone one worse than defining my children by their conditions. You haven’t even given them a chance.

Sure, sometimes a noise complaint is just a noise complaint. But I think we owe it to ALL OUR CHILDREN to give them the benefit of the doubt.

Children raised like that will likely do the same for others.

Anyway, the restaurant had another room and we went there – and the other family actually got up and came over to hang out with us out of solidarity. (Thank you, warmhearted, inclusive, attractive, multigenerational family!)

So things ended up ducky.

Still, the next time you are in a restaurant (or someplace), won’t you smile at someone who is maybe a tiny bit out of their comfort zone? Maybe even ask to watch the chopstick drama?

Love,

Full Spectrum Mama

The Least Popular Kid in the Class – Part Two

At the time of the Least Popular Kid in Class Incident (http://fullspectrummama.blogspot.com/2013/02/the-least-popular-kid-in-class-part-one.html), I tried to get the scuttlebutt on what – besides crying -  happened after G answered the day’s question, but continued to get “stuff” in response.

Chances are, he was genuinely unable to put his feelings into words.  We are neurologically quite similar, and it took me until, oh, last year to realize that where I stand on the spectrum, I tend to get upset before I understand exactly why I am upset (never mind putting those feelings into words!). The overwhelming quality of intense feelings precludes clarity around those feelings until the strong feelings subside. This can be true of overpowering sensory feelings (such as those experienced by sensorially-sensitive people in the average classroom), as well as emotional ones.

Still, knowing that he needed time to process was not going to directly aid G with his lack of popularity, or make him feel better about crying in front of his classmates.

Outside of suspecting it would not be really, really helpful to tell G, “But you’re my very best friend, buddy!” I was at a loss of how to help my child.

So I wrote G’s teacher along these lines:

Dear [teacher],

I love that you start morning meeting with a question. I do the same in all my philosophy classes [read: I am not about to bust your chops for asking big questions]. And I think yesterday's question was a great one. I’m just unclear on exactly what happened after [G] answered the question and then, “for some reason” (according to him), began crying.

When you get a chance could you let me know a bit about what happened yesterday so that I can best support [G] at this time? Or if you have any suggestions...

I know you have your hands full, so at your convenience.

Thanks so much,

[Full Spectrum Mama]

Responding via email, G’s teacher explained that a number of students had been being inattentive or having side conversations while G spoke. Other students had interrupted him, saying that he was wrong about being unpopular. These latter, while acting with good motives, “were not speaking in turn or being respectful to the process.” These factors contributed to G’s frustration.

He assured me that he had never seen anyone be intentionally or directly unkind to G, but admitted that G is often left out or “not paid attention to”…

He concluded with some positive thoughts: “As stressful and unpleasant as it was, I believe that the log jam's been broken and we are going in a positive direction with this very social class.  While I apologized to [G] for him having to go through this situation I also thanked him for giving us all the opportunity to examine our careless and thoughtless behavior and make positive changes.”

Whew!

It was a great gift to have a broader picture of events, and to be able to engage G in a slightly more nuanced processing of what had happened. Not that any of this is going to turn G into someone who doesn’t sometimes get flappy, or extra-loud, or reveal new heights of dorkitude. It might help him accept himself, though, and that’s more than good enough for those of us who love him.

“Free to be You and Me,” with its messages of inclusion, celebrations of difference and our family favorite song “It’s alright to cry,” has been on pretty heavy rotation in G’s room the last month or so. He seems to be feeling less lonely at school, but he’s still asking to spend recess reading in the library because, for him, navigating the playground scene is tremendously daunting.

Now, over a month out, I think everybody was right: lots of kids grew and stretched to be more inclusive and thoughtful following this incident – but G may still have good reasons to cry in school.

Sometimes, too, he may not even know why he is crying.

What he will know is that crying is healthy and totally, utterly, absolutely super alright: http://www.youtube.com/watch?v=Y52bs0aX6v8 *

Love,

Full Spectrum Mama

* Best. Video. Ever.