NOT A DISEASE

Dear Persons,

As a family of vegetarians, we’re always on the lookout for veg-friendly places to eat when we go on the road. We recently ended up at a gluten-free establishment in the Midwest. Pretty good food! But I won’t mention the name because I did a bit of stealth activism there and I don’t want to make any assumptions about the owner or staff or clientele… 

You could get your own water and bus your dishes etc. toward the back of the restaurant, as well as use the bathroom. And there was also a help-yourself bookshelf full of stuff to read back there. I am always down for a good read, so I took a look. 

Well, the books consisted almost entirely of books about autism. But not just any books. 

“Cure Autism With This,”  “Cure Autism With That,” “Get Rid of Autism With The ___ Diet”—you get the idea.   

I felt ambushed—and horrified. I’ve spent all my parenting years trying to get my kids to love themselves as they are. Sure, I’ve read my share of books about the various nuances of our lives, such as adoption, autism, racism, neurodiversity, learning differences, behavioral differences, trauma, etc. 

And hey, yay healing! We all have stuff to heal. 

Heal away! If, in fact, it’s something that needs to be and can be healed. 

But I’ve always operated in a context of acceptance and diverse perspectives. This felt like a full-on, unilateral assault on being autistic—however well-meaning. 

I quietly went back to my table, took out my mini travel notebook and began to write. Then I went back to those shelves and placed a note in each book: “Autism is a neurology not a disease.” 

And on the long drive home from our trip, I thought about the ways our culture pathologizes so many things that might better be treated as normal and healthy aspects of the human condition. 

Being shy? A serious condition. Same-sex love and desire: a psychological disease? Until shockingly recently, the majority of people, including some scientists and doctors, thought so. Cellulite: abnormal but “curable” (hah!).  Are you little bit weird? That’s weird. Maybe kind of…spectrum-y? Better treat it. 

We even treat getting older like a disease. In fact, I’m embarrassed to admit (even to myself) how much of my internal dialog consists of self-criticism over my age spots or crepey skin. How ashamed I feel on a very gut level about aging, despite being a feminist and never, ever ageist with others. 

Um…HUH? What’s the alternative? 

When will we wake up to the full range of beauty?

Thanks and love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy 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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THE LINGO

Dear Persons,

A good friend texted me the other day to say her son had called someone a “midget” and that didn’t seem right to her. Did I know a better word? I didn’t, actually. I wrote back:

Oh dear. With these things I think the Most important thing is what the person him or her or their self wants to be called…Person-first language was/is a trend (person with autism, person with dwarfism...), but that hasn't entirely worked out either. I've heard "small person," but - ? Complicated. Pretty sure “midget” not good tho...

Have you read Americanah by Chimamanda Ngozi Adichie?

The startling revelation in this book, for most people, is that being black is a thing in the United States in a way that it is not in Nigeria…We grapple with race in this country in ways that some other countries don’t, because of our terrible history of slavery, because of demographics, because of ongoing racism…In other places, other characteristics separate or unite people! Sometimes communities even form over shared differences - neighborhoods or meetings where people share certain qualities that may alienate them in the mainstream of a  given context. 

Being different is an issue only because, while we all live in somewhat diverse environments,  there are in every environment traits that most people share or that are considered “the norm,” such as heterosexuality, “typical” neurology, “white” skin, “black” skin, cys-gender identity, biological-family formation, “typical”family structure, “typical” ability, shared nationality, and so on…

This is changing. 

I see people noticing how random and inherently unimportant such aspects of people are; I see people celebrating diversity; and I see people trying to approach differences with more sensitivity. 

Parents of children with differences or people with differences are sometimes seen as “experts” on difference, but mostly we are just used to being thoughtful about such things in ways that can be new to some.  

So here’s my main suggestion: ask. 

Ask people what they want to be called. 

If you can’t ask, do the research to figure out the most respectful way to say what needs to be said.

Mostly, just try to see people as whole people, rather than reflections of a particular aspect of their being. 

Thanks and love,

Full Spectrum Mama

P.S. Even “Voices of Special Needs” might be taken as offensive by some: who is speaking for whom, and why are these needs “special?” As a neurodiverse person and a member of a family formed by adoption, I speak out about these topics as someone who is fundamentally enmeshed in such identities and speaking from personal experience only; I share our experiences in the interest of spreading understanding and awareness and inclusion. 

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!

An InLinkz Link-up

HOPE

Dear Persons,

On this shortest day of the year, the Full Spectrum family wishes you hope.

Over the last five years, this blog has grown from a solitary voice in the dark looking for community and shared stories to a force for advocacy and awareness over 100,000 readers strong.

On this solstice, I am grateful for you, dear readers. Together, we are shedding light on the worth of all people. We are exploring the ways in which our challenges can be met with justice and grace, and ensuring that the unique gifts of every individual can be nurtured and celebrated.

Much love,
Full Spectrum Mama

TEAM FRIENDLY FACE AT HIGH SCHOOL ORIENTATION

Dear Persons,

Team Friendly Face (links: http://fullspectrummama.blogspot.com/2014/05/team-friendly-face.html and http://fullspectrummama.blogspot.com/2014/06/team-friendly-face-update.html), convened at the beginning of Middle School, was represented the other night by a few friendly faces as I walked apprehensively into the orientation for parents of incoming ninth graders.

The auditorium was significantly less full than I would have expected, given the size of the incoming class of first year high school students. To this casual observer, it emerged that there were basically two types of parents who chose to attend this event. Both sets looked keyed-up, nervous. But one set looked excited, too, whereas the others, my Friendly Face peeps, looked TERRIFIED. We know how hard transitions can be for our kids, both for individual reasons, such as anxiety around new things, executive function challenges, and so on, and for larger-scale reasons, such as the inevitable jostling and alienation that come with new social situations and groups. (Guess who’s usually targeted in high stress situations? People who are different? Yup.)

The future  AP parents, the ones who indeed legitimately signed the Honors English agreement that was in the million-page high school transition packet – the Honors English permission form that I’d signed because, why not? Hey, my kid is GIFTED, and...um...honorable – kept asking questions about things like “prerequisites for calculus.” The rest of us cringed, kept quiet. Sure, the school administration and teachers seemed welcoming and nice, but we all knew our kids might need a slightly different – probably more extensive - set of guidelines.

After the presentation, I felt shellshocked. Team Friendly Face member J came over to me, crying. I felt a migraine descending. We tried to prop each other up. Team Friendly Face members K and C reminded themselves and us that our future ninth graders have such a gift for finding the good in every situation. That our fears don’t always manifest – and often go blissfully unshared by our children...

Then my shy, sometimes uncertain, Team Friendly Face friend J walked up to the Special Education representative and, before my eyes, turned into an articulate, assertive Warrior. While I stood mutely by, gazing through narrowed eyes, trying not to sway or vomit (migraines are fun like that), she introduced herself (and me), asked some really smart, important questions, and just basically advocated her butt off for her son. I was so proud of her! And a bit ashamed that I’d just written a whole post on advocacy...But then sometimes we need to lean on others when it gets too much. I was super grateful for those Friendly Faces at this event! I know I will be getting plenty of chances to advocate in the next few months and, thanks to J, some of my questions have already been answered.

   

It was also a comfort to know I could jot down some reflections on this ordeal in my 300-page and growing Full Spectrum Mama draft file. I publish only a fraction of my writing, but somehow the luxury of writing things down, along with the opportunity to process this writing provides, and then – when appropriate, when I have the time to polish the writing, etc. -  I am grateful to be able to have a part in the wonderful blogosphere phenomenon of letting others know they are not alone.

That being said, I’ve always seen THE COMPLAINT DEPARTMENT as a place where ANYONE can share their experiences. I will be publishing a plethora of COMPLAINTS in the upcoming yearly post. Please email me your tisk-tisks, your triumphs, trials, tribulations, tales of woe and so forth at jineffable@gmail.com. 

Love,

Full Spectrum Mama

WINTER LIGHT: ALL IS CALM, ALL IS BRIGHT

As the days lengthen, though many of us are in the deepest part of winter, may we all seek to spread a Full Spectrum of acceptance.

May we celebrate and embrace our differences, advocate for ourselves and others, and live our lives as superheroes - vanquishing intolerance, ignorance, oppression...any force or person or group who tries to keep their fellow beings down or hinders their shine!

May we glow with engaged, empathetic love.

May we wisely understand that in light, ALL colors are contained – just as all shapes, sizes, abilities, neurologies, sexualities, ethnicities...make up the whole of our world.  

Oh, and may we each and every one be blessed with a heaping dose of perspective.

Wishing you warmth and health in the New Year, with much love,

Full Spectrum Mama

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

BLACKINESE

Pardner grew up in predominantly African-American neighborhoods. I was born in Panama and grew up spending time in Panama City and the Darien jungle town of La Palma (and in the interior, in smaller indigenous villages), usually being the only white person around besides my father. My godfather was an Emberá Cacique (the Emberá are the indigenous people of that region; Cacique means chief). The population in La Palma consists largely of Darienistas – descendants of escaped African slaves.

So Z’s New England-based family is a lot less super-White-rooted than most two-White-parented families around these parts….But that still doesn’t quite explain why she thinks she’s Black.

Z was adopted from China and is of – so far as I know and can tell – entirely Chinese ethnicity. When she was a baby I often thought she looked as if she could have been Emberá, but this resemblance has diminished as she has grown older.  In any case, I’ve always made sure to have positive representations (books, music, art) of people of all shapes, sizes, abilities, neurologies, and skin tones around the house. I try to celebrate a variety of cultures and perspectives. My goal has been not so much to make Z aware of being special (because she is Chinese, or was adopted, or…) but to teach –sometimes without explicitly doing so – that all people are inherently valuable.

For example, here are her favorite dolls:

                            

   

Figure I – Z’s Full Spectrum of Dolls

“Cinderelly,” far right, is a little hard to explain. Something involving Grandparents and a very headstrong young lady. Otherwise, as you can see, we have a very inclusive and diverse doll family. “Donna Poodle Itchy,” center, who is of Chinese descent, is Z’s favorite doll baby, but she loves them all. And, I suppose, feels ethnically connected with them all as well: she knows she is from China, her parents are White, and she is, apparently, Black-identified.

 I’ve heard her telling people several times, “There were only two Black kids at [her old school]. Me and [Black person].”

And check out this Thank-You card she – who has warm beige-toned skin - made for her best friend, who is from West Africa and has very dark brown skin:

                             Figure II – Thank You Card (Self-Portrait by Z, with her Best Friend)

Many, many moons ago, I worked at a fabulous organization called New Jersey S.E.E.D.S.  with the man I (along with his four sons, and I bet a few others like me whose lives he’s touched deeply) am now privileged to call “Dad.”* There was a student in our program who was half Black and half Chinese and called herself “Blackinese.” I’ve never forgotten the pride this student had in her voice when she explained her heritage, nor the excellent word she used to encapsulate that heritage.

I’ve been reluctant to too-strongly correct Z on her identification with other people of color of (speaking generally) a different color because it does seem to be a very positive thing for her. She is privileged to live among many terrific role models of all sorts, and in a progressive, inclusive community where being a person of color is a plus (ideally, in my humble opinion, it should be a neutral, butanyway…).

So I guess she’s just Blackinese.

Love,

Full Spectrum Mama

* Here’s what this wonderful man said when I asked him how he identifies himself ethnically as I began this post:

Hi [FSM],

Jesse Washington once asked me to describe my race in six words. I answered, “Race is a fiction; I’m black.”  

I do not say African-American because all of us come from Africa, some simply left the Motherland later than my ancestors did.  If we are simply African apes my ethnicity is special because I identify most with blacks worldwide.

Love,

[“Dad”]

HEAVEN

Robin Williams - who anecdotally was on the autism spectrum  - was someone I've long seen as an Aspergian role model: someone I could point to for G as a person who was successful on his own terms, perhaps even because of his differences.

I was surprised by how sad and shocking I found his suicide.

I was one of many. A friend posted a recent-ish (2010) interview in the Guardian in which Williams' struggles to connect and succeed socially were striking. The interviewer stopped short of making fun of his accents, obsessions and tangents...but the undertone was perceptible.

Tonight at dinner, G began reading aloud in an exaggerated robot voice. I know people have told him he sounds like a robot. At that moment it hit me: perhaps Williams was using his multiplicity of voices as my son was using his robot voice -- essentially as an alternate or cover-up for his own quirky cadence.

I wish Robin Williams felt accepted and heard just as he was. I hope if he's in heaven it's a wildly, happily neurodiverse (and wildly, happily diverse diverse) place; I hope - if what happens is that we come back - that he comes back in a context that **unconditionally** accepts and celebrates him; I hope if this life was all there was for him that we learn from his pain.

I hope younger generations feel that  their own quirky, heavenly voices are valid, worthwhile, beautiful. Because they are.

Love,
Full Spectrum Mama

THE WEDDING

We are at a family wedding in Maine. My sweet, hunky cousin, Whitey McWhiteperson is marrying one of the most beautiful women I have ever seen in my life,* who happens to be from Kenya, although she grew up mostly in the United States.

* Also, she’s a great person and a Nurse. Grr. I mean…yay!

We are surrounded by close to a hundred people from Africa – most are from Kenya but a few are from Liberia, Ghana and Zimbabwe; most are immigrants to the U.S., but some are here from abroad. My family, consisting primarily of real live White people, makes up only a fraction of the wedding guests.

Many guests from The Bride’s side are in traditional dress, especially the women, who are in amazing, architectural headpieces and dresses of bright, stunning fabrics.

The Bridal Procession begins. The Bride is preceded by a whole bunch of middle-aged women singing exquisite and/or rowdy songs in Swahili. Other women are jubilantly ululating. As The Bride proceeds, she is accompanied by a rainbow of younger women in a variety of matching outfits by group (future sisters-in-law in lavender taffeta, friends from the U.S. in blue silk, friends/family from abroad in mixed colors…).

The singing, ululating elder women are using large, intricately patterned cloths as rugs to cover the ground in front of The Bride. Each cloth is removed as soon as she has passed, and quickly carried forward to lengthen the stretch of cloths in her path so that she need never touch the ground until reaching the altar.

G and Z and I are watching the scene with delight and wonder. G has settled down a bit from his initial flailing and neediness (from feeling overwhelmed by all the people and a new environment). I see stars in my daughter’s eyes and am happy to know she is experiencing such a harmonious, extraordinary, multicultural and flat-out-super-enjoyable event.

I’ll look forward to the color-blind (gender-blind, sexual-orientation-blind...sigh) day when such heterogeneity is a commonplace, but for now I’m feeling truly grateful that my daughter gets to experience this diversity in relatively-homogenous northern New England.

Figure I – Z (right) with New Friends at the Wedding

A hush falls on the guests as The Bride and her attendants near the altar, which is located on a breathtaking spit of land overlooking the ocean. The singing gets quieter, but no less moving.

Suddenly, through the reverent silence of the audience, a large voice rings out from my rather small daughter: “That dress must have been relley expensive!”

Um…Whoa.

All around us, people are laughing, with a slight undercurrent of chagrin. My entire parenting career passes before my eyes: what about “our” values (non-materialism, valuing what’s INSIDE instead of appearances…)? Why bother raising kids without tv and consumer culture if this is what happens in the end? How is it that, surrounded by marvels of all sorts, the price of the dress is what Z chose to focus on??? Where did this comment of hers come from???? Is there some genetic component to character????????? As well, whence the Valley Girl accent?

Big questions.

So, you know, next thing I know I am drinking a teensy bit more than I might be under other circumstances. Right? Right? Doesn’t everybody feel a smidge uncomfortable around family?

Oh, wait, no. WELLANYWAY.

Lucky for me, after a few hours on the dance floor, what remained with me was laughter and the pleasure of losing myself in the festivities (with a little help from my old friend Vino).

This was partly because Z and I were the last ones dancing from my cousin’s family, shaking our patooties long after the rest of that side had left the dance floor. Thereby proving beyond a shadow of a doubt that (as alienated as some in my biological family may be) my daughter and I are totally related.

And it was partly because, as a fabulous someone said, “At least she didn’t say it looks cheap!”

Love,

Full Spectrum Mama

“Do you attend this scholarly institution?” or, “Do I know you?” or, Shifting Gears IV*

One minute I’m making good-natured fun of my son; the next I am realizing we share a ridiculous amount of stuff I didn’t even know about prior to becoming his mother. Obviously, learning about ourselves is NOT the main point of parenting (!), but it sure is a side effect!

Take face blindness (prosopagnosia). I always thought I was “bad with names” or “not really great at recognizing people I don’t know well.” I assumed that everybody was pretty much the same in this regard, that it would take anyone months or, more likely, years to even begin to distinguish, for example, between the fifteen or so medium-sized, slightly sporty/preppy mothers at school with shoulder-length dirty blonde hair. Hey, if not for my flashy/freaky clothing I could be one of them and I still can’t tell them apart.

But I guess everyone else...can?

Face blindness is common in people on the autism spectrum and presents in a range of degrees, in this as well as in the general population. G’s is somewhat more severe than mine, but I know he will develop coping mechanisms. In any case, if G sees someone dressed like me with hair like mine and pinky-beige skin, he will think it is me. His mother. He might figure out pretty quickly, from other cues like voice or not being recognized, if he’s got the wrong Mom, but there are moments like that, and many similar…

Age is a tough one for him, especially because he doesn’t really care about it; Gender he usually gets (though that can be fluid, which he is totally comfortable with…). But once gender is clear, other aspects are fuzzy. The boys in his old fifth grade class, all of Caucasian descent, to me were basically either stringy or pudgy at this age, and I could not tell them apart aside from that. With a few exceptions, G seemed to feel the same.

Both G and I saw the diversity at his new school as potentially a big boost in this area, especially as compared to his profoundly homogenous prior school.

Or take another commonality: vocabulary and formality of speech. Watching G interact with his peers has taught me that most people of all ages speak much more casually than we do. By the time I realized how this might impact G, we were already far too deep into a lifetime of reading old-fashioned books to backtrack.

Here’s a little vignette that illustrates both qualities, face blindness and unintentionally hifalutin speech:

We went to check out the kids’ new school a few days ago. There were two upper elementary school age looking boys riding bikes around the playground in the company of a young man in his upper teens or early twenties.

G approached the man. “Do you attend this school?” he asked.

“No, but my friends here do,” the man replied.

G got right up in one of their faces (which one? Not sure. They looked the same to me!) and asked, “What can you tell me about this school of yours?”

“I dunno, regular stuff,” the kid said, in regular kid fashion. “We eat pizza, play on the playground…have lunch…”

“Thank you very much,” said my son. “I appreciate your input.”

The next day, Noodle and I were talking about a college friend of hers who “got religion.’

“Did you anticipate this propensity throughout prior interactions?” I queried.

Now, Noodle being Noodle, she didn’t blink an eye. But I burst out laughing. I mean, who am I to worry about my son making friends on the playground?

Soanyway, amidst this huge shifting of gears -- today being the first day of school -- I am happy to report that the very first two kids G met in his new class BOTH had “differences” from the white, able-bodied, neurotypical norm in which we were previously immersed. This will make them easier for G to recognize and, perhaps more importantly, will also render G himself less “different” in the scheme of things.

Double yay!

Love,

Full Spectrum Mama

 * Shifting Gears I (http://fullspectrummama.blogspot.com/2013/06/shifting-gears-part-i.html) was the most polarizing post I ever wrote. In Shifting Gears II (unpublished), I couldn’t help but perpetuate that polarization. Then, in Shifting Gears III (unpublished), I began to try to break it down and make it a spectrum rather than a bifurcation. But I had to…ahem…shift gears for the new school year!!!