HEY, YOU!

For Ozzie

Hey, you - you, who just got a label after years of searching for answers about yourself.

Hey, you - whose child or loved one just got a diagnosis.

Hey, you - who just gave birth to a child with a difference and/or disability.

Hey, you - who suddenly feel like it’s all too much, who don’t have it in you to cheerfully be different today. 

Are you spiraling? Of course you are. Do you feel like your life is being eclipsed? I’ll bet you do. 

Can you breathe? Just stop, take a moment - one moment! - and breathe. Between you and me and the fencepost, let’s face it: even one moment can be a lot to find what with all this diagnosis/labeling/disability/difference navigation business! But I am here to tell you that it is possible…Just the one. Try just that one moment of pausing to breathe.

(I was a Yoga teacher for a long time and one thing I learned was to teach only what you yourself practice. All that self-care stuff sounds great to me but…really? Who has the time and/or money? I know, though, that if I can find one moment to breathe you can too!)

Here’s the thing: there’s nothing wrong with you/your child/your loved one. It’s no one’s “fault.” Yes, the world wasn’t really designed for some of us - and there IS something wrong with people who discriminate, IMHO. But you (your child/loved one)? Perfectly imperfect just as you/he/she/they are. 

Sure, in time you/your child/loved one may benefit from certain interventions - whether medical (surgery, medication…), therapeutic (physical, psychiatric…), educational (IEP, tutoring…), etc. - but so much of that is designed to help us “fit in” to the world as it is, not necessarily as we are. No judgment!  Every individual and family must make their own choices! However, please never feel that these things “fix” you/your child/loved one; instead, they help us to function better in a certain, particular type of context. 

Here’s an example: students with ADHD can thrive without any medication or behavioral finagling in a variety of learning environments, many nature-based, but typically not including a standard classroom environment. Yet the standard classroom environment is what they usually encounter, which may lead to any number of challenges, including issues with self-esteem…

One of my best college friends and I were a tiny bit tipsy-ish one night and thought it would be really funny to call out to passersby with the hilarious words, “Hey, you with the internal organs!”  (Good come on, right?) 

This particular friend has had her challenges in her parenting journey, I can assure you, but her humor and accepting attitude have served her well.

Because hey, by the way, even if you DON’T have internal organs, those of us who have suffered for our differences and/or those of our loved ones tend to know and live true inclusion and thus we respect, accept, and honor you with no judgment regarding your internal organ status.

See, we’re all in this together - something I think those of us who’ve had to fight for our own inclusion or that of our loved ones realize early on. The fact that not all people see things this way is sad both for us and for those who don’t see this truth. 

So hey, you, you reading this post - either with your eyes or another organ, through being read to, or an assistive device - you are stronger than you know. And you are not alone. Wait till you meet some of these characters who get it, who’ve been there. 

Deep breath in, deep breath out...Welcome!

Love,

Full Spectrum Mama

P.S. The Bloggers in this Blog Hop might be a good place to start: 

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

IS IT TOUCHING?

Dear persons,

I just finished reading Little Women to G and Z. That book is way longer than I remembered - and – seriously?! - emotionally grueling. As had happened throughout Little Women, but on an even more snot-filled, ugly-crying level, I began to lose it as I tried to read those last pages aloud. The closing bit, where Marmee says, even after all the poverty and hardship, and even though her daughter Beth died (sorry if I am giving anything away here), “Oh, my girls, however long you may live, I can never wish you a greater happiness than this!” And she says this simply because they are all together...I can’t even type it without sobbing.

As I read to her, as she often does, Z observed my emotional reaction and asked, “Mom, is it touching?”

Honey, to me, just about EVERYTHING is touching.

You can just look at my red, blotchy, slimy face – or your brother’s: Yes. It’s touching. When a bird lets another bird go ahead of it at the birdfeeder? Touching. Something on the radio about helping people? We will probably at a minimum get misty-eyed. When there’s a video of a baby seal? Touching. Human interest piece in People magazine at the dentist? All those interspecies friendship books? Elderly people holding hands? Yes. Anything to do with animals, life, death, romance, family, and so forth is fair game for being touching.

At the same time, on my own, I’ve been dipping into The Highly Sensitive Person, in which I was *stunned* to read that 42% of people describe themselves as “not sensitive at all.” And here I’d always thought everybody was just better at managing their feelings and reactions than I was – because there was something wrong with me. Something weak, or ignorant, or lame; a lack in me which rendered me less adept than the majority of people...People who didn’t seem to cry or laugh quite as readily, people for whom interacting with others, for example, seemed to be much more clear cut, less laden with strong, overwhelming feelings, and MUCH less daunting...

I’d assumed everybody was “like me” and that it was my “fault” for being unable to “master” my feelings and reactions. Now I see another healing, liberating spectrum! I wouldn’t quite put my Z in the “not sensitive at all” category, but on a sensitivity spectrum we clearly occupy different spaces. And this holds true for her sensory processing as well: she’s impervious to hunger, noise, lack of sleep, etc. in a way that’s inconceivable to the SPD-ers* in the family.

In Figure I, I’ve charted approximations of our family sensitivity levels relative to one another (P=Pardner, Z=my daughter, G=my son, F=me). This is obviously simplifying and generalizing, but it also clearly indicates a Full Spectrum of sensitivities just within one family.

Figure I – Touching Chart: From Squishing-Touching to Not Touching

Knowing that others have different sorts and levels of sensitivity, doesn’t mean we ourselves necessarily should attempt to change our own feelings and reactions – even if we are able (?). But that knowledge opens our eyes to possibilities of different perspectives - and perspective, as I tell my philosophy students, is the key to a lot. It’s marvelous to see how we all shine in different ways. It’s intriguing for me to imagine the experience of not sobbing at the drop of a hat; for Z, learning about things that are “touching” is inspiring her to find her own tender spots.

Guess the Full Spectrums will keep learning from each other.

We just started By the Shores of Silver Lake. You know, the Laura Ingalls Wilder where Mary goes blind and Jack, their loyal, loving dog dies? It’s going to be you-know-what.

Love,

Full Spectrum Mama

* SPD-ers: people with sensory processing differences

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

ACTIVISM AND ADVOCACY FOR ALL

Dear Persons,

In honor of GraceLee Boggs.

Stop. If you only have three minutes, please read the above profile of an astounding and inspiring woman instead. Otherwise, read about her and then come back. Please and thank you.

I’d been writing this post on advocacy and activism (topics dear to the Full Spectrum heart) when I heard that Grace Lee Boggs had passed. A fellow Mawrtyr (graduate of Bryn Mawr College: Ms. Boggs was a Bryn Mawr Ph.D.), she was known for a lifelong commitment to justice and equality for ALL. In a time in which all of the following combinations were practically unimaginable, she was a *Chinese-American *female *scholar married to a *Black man. She was a lifelong feminist, worked hard for labor and the environment and her community, and advocated powerfully and effectively for universal civil rights –HUMAN RIGHTS.

My original post explored how we come to activism: how I’ve watched people with cancer (or loved ones with cancer) become cancer activists, people with sensory processing differences become SPD activists, autistic people and their families and loved ones become autism activists...

But my main point was and is that I believe and hope that people whose hearts and minds are opened up by the particular, personal injustices of the world are inclined to open those hearts and minds further to include the desire for justice, fairness, equality, and inclusion for ALL. Grace Lee Boggs represented this beautiful tendency.

She had the vision to see the humanity and worth in all people. Knowing what I know of that vision, I know implicitly that she would have embraced the concept that autistic and neurodiverse people are inherently worthy of equal rights and respect, and that families of mixed ethnicity are simply, and fully, families, and that people with sensory processing differences experience the world in completely valid ways, and...and...

Perhaps it’s this little word, “and,” that’s key. We choose “and” instead of “or:” because there are enough rights to go around. We don’t have to choose whether it’s race OR ability OR sexuality OR identity OR whatever particular “type” that “gets” to have rights.

We ALL do. 

Those with big, generous hearts remind us of the world's potential, sometimes-hidden bigness and generosity, even when it is hard for others to see. Those of us with growing hearts can look to people like Grace Lee Boggs and take hope. 

Figure I – When We Become Rainbows of Inclusion in a Sometimes Limited-Vision World

I’ve wondered why some people come to activism on their own, through a strong sense of more generalized compassion, or whether most come only through experiences of difference, discrimination, challenge...

I’ve also considered how – let’s face it – TIRING it can be to see injustice everywhere, never mind to combat it with all you’ve got. Grace Lee Boggs (okay, she didn’t have children; however she did care a great deal about them!) managed to truly live her commitment to justice for 100 years!

What is your cause? Particular, universal, or both...? And even when you don’t have the time or energy or opportunity to advocate, activate, etc., do you have a broader vision of who should be considered fully equal and human and why? I dare to hope so.

Love,

Full Spectrum Mama

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

AUTISM, EMPATHY, JUSTICE & LOGIC – A NEURO-MOMENT

My gal A and I love to have Spectrum Fests at a nearby lake where we talk feminism and injustice (our shared special interests) and our boys try to work out how to play together when their special interests don’t match. These are special times for us because once the school year hits the fan we both get pretty buried. A is a single Mom with a son on the spectrum. She used to be a student of mine at the Community College and is now about to graduate from a Seven Sisters college via its 100% full-scholarship program for non-traditional students. Go, A!

Last summer, A told me about a study she’d read claiming that logical people actually have more interest in justice, and tend to act more from the impetus of justice than do less-logical people. This made sense to US, as logical, spectrum-y, eggheaded, highly empathetic people. But it flies in the face of a lot of allistic ideas around autism.

The article, “Concern for justice linked with reason, not emotion,” contends that those of us who are “cognitively driven” tend to make the sorts of  “sophisticated analysis and mental calculation” that lead us to act based on logic rather than desire.

In other words, we don’t do kind things because we feel we should because it would be “good,” but because we know we should because it is right. That type of motivation has been shown to be significantly more compelling than emotional incentives. It leads naturally and inevitably to increased justice-orientation – and, thereby, to an increase in just actions.

Reason – a.k.a. logic – is the enemy of moral relativism as it is often used: as a tool for justifying asocial desires and actions. By asocial, I refer (perhaps somewhat polemically) to desires and actions that increase inequality and injustice. I contend that my logical nature, and that of most of the other spectrum-y people I know, precludes judging such actions as acceptable.

One of the many, many benefits of being a Professor of Ethics is learning to distinguish empathy from moral relativism. I’ve always felt that the gross disparities in peoples’ lives were unfair – and resented the attempts of people I saw as privileged to equate their problems with those of others who clearly – to me – had harder lives. Empathy means having compassion – literally, with-feeling – for someone; it means understanding them as best you can and, to a reasonable extent, acknowledging their concerns. It does not mean acting as if all struggles and challenges are equivalent – or accepting cockamamie, hypocritical excuses for what basically amounts to doing whatever the heck one wants. As Albert Einstein (a beloved Aspie role-model and ethicist, among other things) said, ““It is abhorrent to me when a fine intelligence is paired with an unsavory character.” Logic precludes using intelligence to justify selfishness, or to equate the inimitable.

Mundane example: I recently mentioned to someone that there’ve been times when I’ve gotten upset in the grocery store because of money issues. They were sympathetic but then added, “Then, once you have enough money, you might start to feel guilty about having more than others, or have a hard time choosing what to buy!”

Um…no? Not. Equivalent.

It seems...logical to assume that if one has more than one needs one should do something about that rather than "feeling guilty;" and that the luxury of choice is a gift, not a burden (and, if the latter [?], not one that should be publicly bemoaned).

When A and I sit around discussing --  and, okay, sometimes bemoaning --  our situations, I know she, as a single mother, has it harder than me. We both know if we were Black or transgendered or more differently-abled than we are (or any of the other ridiculous things that can label one around here and make one, therefore, to some, “less-than” or “weird” or “automatically criminal and/or stupid and/or degenerate and/or inferior and/or, at the very least, suspect” in ways that limit opportunities and inclusion) it would be harder. That’s just logical! I think I have said this before: the only people who ever say stuff like “it’s all relative” are those privileged enough to have that belief and clueless enough to express it.  Most of us know better – and we’ve learned the hard way.

I make this point not to punish all the annoying people who think they have it sooo hard and don’t. What I want to do is draw a link to the sorts of persistent economic and social injustices that are fundamentally grounded in these types of self-rationalization – and that are typically unavailable to deeply logical people, including many on the autism spectrum.

Logical people just can’t get around numbers. If Person A has a salary of $200,000 and their “lifestyle” demands a new car every year and Person A is not logical, Person A can say to herself, “I need this new $30,000 car,” with no qualms whatsoever about those in need, such as, say, Person B, who makes $10,000 a year and is struggling to feed her family and has a car that barely functions. Person A can tell Person B, “It’s all relative.” But Person B, if she is logical, logically knows this is not true: A working car is a working car. $1=$1. $30,000 can feed four families for a year.

…Logic.

I like to believe that a logical Person B, if she somehow secured a job making $200,000 a year, and was in the same situation as Person A, above, would use that $30,000 to help those in need rather than to buy a new car because it is reasonably the right thing to do. A and I sure would. We don't just bemoan. We also plan for the day when we will be better able to help others. Those are our Special Fantasies. 

…Logic,logic, logic.

Truly logical people cannot ignore the fact that torture is torture:

When Dick Cheney calls torture ‘enhanced interrogation,’ it doesn’t make us understand torture in a different way; it’s just a means for those who know they’re doing something wrong to find a phrase that doesn’t immediately acknowledge the wrongdoing…

Whatever name Cheney’s men gave torture, they knew what it was. A grotesque euphemism is offensive exactly because we recognize perfectly the mismatch between the word and its referent. It’s an instrument of evasion, like a speeding getaway car, not an instrument of unconsciousness, like a blackjack.

“Word Magic,” by Adam Gopnik in The New Yorker 

Ostensibly, the more logical you are, the more you recognize this sort of internal, mutual and/or institutional subterfuge; ideally – and in fact – logic thus makes one less prone to evasion, rationalization, justification….

Truly logical people know, logically, that there is plenty for ALL on this planet, if we omit greed on the micro (personal wealth hoarded and/or spent on thing after thing) and macro (nationalism, imperialism, huge corporations oriented primarily toward profit) levels. I am aware that’s not going to happen right this very minute – tho A and I wish it would! – but what if, bit by bit, people and institutions became more logical, and thereby more justice-oriented? What if empathy was linked primarily to real-life actions and choices that actually promote justice (rather than to a nice-seeming attitude)?

  

It makes me bonkers when allistic people assume that autistic people lack empathy. Here’s just ONE reason why:  for many of us, logic is linked to empathy as a value that must be enacted, rather than as a feeling that may be ignored – or rationalized away. Some people on the spectrum may seem self-centered, focused on their Special Interests and/or socially inept, but their literality and logical-tendencies typically make them among the most fair, just, unselfish, empathetic people around.

Love,

Full Spectrum Mama

P.S. This is the Second NEURO-MOMENT. Read the first here. 

ARGHERS AND ACTIVISTS

Hello, my name is Full Spectrum Mama and I’m an Argher and an Activist.

I’ve been politicized by having “different” children, but I suppose I was pre-politicized by being “different” myself. In the family I grew up in…well, let’s not get into that. Let’s just say it took me a long time to realize that speaking up when something is wrong is not “having a victim mentality!” It’s about seeking justice. Speaking up does not make you the bad guy. It makes you an Argher and an Activist.

The “Argher” label arose when my Meeting Friend and I were commiserating over an injustice and I thanked her for the pleasure of feeling like we always understand each other and she replied, “I can argh with the best of them.”

Well, I appreciate that a great deal!

People with obvious differences from the “norm” and/or the majority  – those with visible physical differences, differences of demeanor, skin color differences, some trans people… – don’t have a choice about being noticed. Sometimes that “noticing” takes the form of bias, discrimination, bullying…

People who are activists for animal rights or political justice or against other injustices may be activists for causes that are urgent, but they have a choice.

In any case, there IS injustice in the world.

Sometimes what we need when life deals injustice is someone to say “Argh!” with us. And that can be enough. Actually, we almost always need a fellow Argher -- at the very least to understand and empathize.

There are several sorts of Arghers:

            The CO-Argher, who shares your situation;

            The WITH-Argher, who just completely Gets your situation;

            The GENERAL-Argher, who is compassionate in every way…

…We will not deign to discuss the ANTI-Arghing-Argher, who wants the other Arghers to can it, pronto.

Our fellow Arghers make life bearable when something feels very wrong. But, often, we need more. The “Activist” label arose for me when stupid stuff happened & I chose to call people & institutions out on their discriminatory behavior. Activists seek to be catalysts for change, because the status quo is often unacceptable.

Arghing is private, but Activism is public and often elicits resentment. People generally want Activists to keep quiet and go away so that they don’t have to be inconvenienced by accommodating the equality of ALL.

So—rry.

Activists may be sorted into similar categories:

The CO-Activist, who shares your cause (just about everyone I know who has a “different” child has been shunted into Arghing and/or Activism. As a parent, one basically has no choice);

            The WITH-Activist, who just completely Gets your cause and supports it;

            The GENERAL-Activist, who is justice-oriented in every way;

The ANTI-Activist, who finds Activists burdensome and pesky.

Liminal people – minorities, people with differences, etc. – often have way more encounters with neurotypical, gender, economic, racial, normative or other privilege. If a given liminal individual (or their parent or partner or other loved one) is strong/brave/privileged/foolhardy enough, he or she may choose to speak up about injustice.

For many reasons, however, we don’t always say something, whether through public Activism or private Arghing. Some of us are non-verbal, some of us are shy, some of us are scared, some of us are tired, some of us are cynical, some are resigned…

We DO always feel it, though; of that you may be sure.

What happens, then, is that those of us who by virtue of our own and/or our children’s and/or our loved one’s differences see more injustice and choose to address it sometimes find ourselves in these positions:

“rebellious” people of color,

“uppity” women,

“whiney” people in poverty,

“annoying” disabled people,

“shrill” queers…

A.k.a., Arghers and, perhaps, Activists!

The funny thing, vis-à-vis the people who resent Activism, is that the kinds of Arghing and Activising that I am talking about are long-term beneficial to ALL. Sure, it might take some stretching on the parts of certain individuals and institutions. The “privileges” of inequality from which some benefit (and others suffer) may be hard to relinquish, but I cannot hope but believe the rewards would be more than commensurate. Truly, what do we ultimately have to lose by being more inclusive as individuals and communities??

Ideally, as painful as they are, these experiences of talking about and struggling with and negotiating over and even experiencing injustice make us more fully human, more empathetic to others.  Once we have experienced injustice, we don’t want ANYONE to suffer.

Take, for example, Hedy Epstein, the 90-year-oldholocaust survivor arrested for protesting against institutionalized racism and violence in Ferguson, Missouri last month. My instant take on hearing about her was: OF COURSE: She has experienced and recognizes injustice…She cannot stay silent, having once escaped being permanently silenced.

She, too, is an Argher and an Activist.

We can be proud to share her proclivities!

Love,

Full Spectrum Mama, A. & A.

Suite: Shorty Hedgehog Eyes

I. A List of Who Can Stand in Front of Me, and When

Z was holding a scrap of paper at pickup the other day. From a quick glance, I saw there was a dividing line drawn down the center of the paper, with ten or so names on either side. Underneath this was another line with two names below that one, and some numbers. 

“Whatcha got?” I asked, curious.

“A list of who can stand in front of me, and when.”

“Oh.”

II. The Sad Fairy and the Broken Fairy

We have an iron garden fairy with downcast eyes and a sad expression. She was a gift from a dear friend and has lived, with her friend Hunk of Rose Quartz, on a nice stump in our yard for some time.

We are preparing to move and I brought up the fate of the sad fairy with Z: “This fairy is so sad, maybe we should leave her here for the next people and then she will get happy.” Part of me thought maybe we’d be leaving some of our travails behind with the sad fairy.

Z looked at me with horror. “No, Mama! She wants to come with us! I will take very good care of her and find her a home in our new home so she will feel better.”

Although I’d considered abandoning her as well, I also packed up the painted resin garden fairy with the broken wing.

III. Hedgehog Eyes

“That seagull is a girl,” G announced.

“How can you tell?”

“It has the eyes of a mother.”

“How can you tell?”

“Well,” G explained, “it just has a certain expression. There is a look of love in its eyes. That’s ‘the eyes of a mother.’”

This, from someone who has a hard time telling similar-looking people apart – and who generally cannot read facial or body language, we-e-ell, verymuchatall. Traits which, basically, did not fall far from the proverbial mama tree.

The first night of being Z’s mother, I looked deeply into her eyes as I tucked her in. I have never been big on direct eye contact with adults but children, especially babies, seem to look through their eyes in non-threatening/-confusing/-overwhelming ways. Z’s eyes were unfamiliar, alien, so round and black that the first thought that popped into my mind was “hedgehog.” My second thought was, those are – beyond the shadow of a doubt -- the eyes of my daughter. They were bright and a little fierce/scared like those of a wild animal that might, with care, be loved into feelings of trust and safety.

IV. Team Good

On Election Night, G was goofing around at the dinner table, cracking himself (and Pardner and me) up with talk of “Demo-Craps” and “Re-Butt-licans,”(the finer implications of which I hope escaped him). Sometimes, though, G gets “stuck,” and he would not stop saying these words despite my telling him he was not using language suitable for a seven-year-old.

Z covered her ears and, with her clear, dark, never tame but perhaps increasingly civilized eyes, looked right into mine.

“That is not appropriate, G,” she announced, holding my gaze, “and I am not listening!”

Since I am Z’s primary caregiver, she focuses a great deal of oppositional energy on me. It was such an incredibly nice feeling to have a moment where I felt she and I were so clearly on the same “team,” a brief respite where she felt safe enough to let down her defiant defenses and join with me in an effort to give her shelter – even if that shelter was merely from a grody eleven-year-old.

I think she felt it too. Later, she wrote me a letter, “thak you for that diner” [thank you for that dinner] and signed it “love form shorde” [love from Shorty]. 

V. The Hope of a Mother

When glimmers of empathy and Do-Right shine through the daily power struggles they are a balm for the Full Spectrum soul.

Z showed me we have plenty of love and caring to share with every member of this forever family, even those of us who might be referred to as imperfect…or inanimate.

She’s showed me that although it may take a little longer than we’d like, a frightened creature can learn to trust – and that with that trust comes the possibility of walls coming down.

I’ve begun to hope that, in the fullness of time, Z will use her substantial magnetism and undeniable, very tall and large will for the sake of goodness and justice.

I leave you with this Emily Dickinson poem about hope. It often pops into my mind both when I feel hopeless, and, like now, when I feel the power of hope.

254

"Hope" is the thing with feathers—

That perches in the soul—

And sings the tune without the words—

And never stops—at all—

And sweetest—in the Gale—is heard—

And sore must be the storm—

That could abash the little Bird

That kept so many warm—

I've heard it in the chillest land—

And on the strangest Sea—

Yet, never, in Extremity,

It asked a crumb—of Me.

Emily Dickinson

Love,

Full Spectrum Mama