EQUALITY, UNITY, AND JUSTICE

For George Floyd, Breonna Taylor, Ahmaud Arbery, and their fellow human beings unjustly killed for being Black

I.

I’m about as white-skinned as it gets. 

But when I lost my still-alive white father to mental illness, a Black man—a former mentor and teacher—stepped up to fill that thankless role without even being asked. 

There are very few people of color in my current hometown.

But my daughter’s best friend all through grade school was one of them, and her family became my adopted family here. 

I’m a United States citizen.

But the first year and most formative times in my life were spent in the Darien jungle in Panama. There, my father and I were usually the only white people for hundreds of miles, amidst indigenous people, the descendants of escaped African slaves, (mostly) Spanish colonizers, and Chinese canal laborers, and combinations thereof.

My daughter is a U.S. citizen. 

But she was born in and adopted from China and is genetically of entirely Chinese descent.

Four rational reasons why I march, why I vote for equality, and why I always do my best to do right by all people of color.

II. 

My son and I are neurodivergent.

Just as a Black person may be in danger (or be bullied, or passed over for a job, and on and on) simply for “being in a black body,” my white-bodied son faces discrimination and danger for having an autistic mind. (I “pass” a little more easily, but have also dealt with plenty of neurodiversity-related issues over my lifetime!) 

Like most Black parents, many parents of autistic children teach their kids how to behave if they encounter the police. “Acting weird” or “different” is yet another way to “get yourself in trouble”—or worse. 

When we—whoever we are, whatever our skin color, etc.—say “Black lives matter,” we are in fact saying “All lives matter, because all people should be equal”; 

and we are also saying “We understand that, historically and in the present, people living in so-called black bodies have been, and are being, treated with extraordinary violence and injustice, as if they don’t matter, and we want everybody to know that black lives are of great and necessary value in the tapestry of humanity and we ally with Black people.”

If you’re “foreign,” gay, Autistic, brown, yellow, Black … in short, if you’re colored or shaped or oriented or identify differently—if (in the United States) you’re different from the dominant/“normal” white majority in any way, really—you know what it feels like to have your body and whole being seen in ways that categorize you, that relegate your existence and actions to a lesser status on the basis of a single trait. 

Another rational reason why I advocate and ally with ALL marginalized peoples.

III.

But rational reasons, even very convincing ones, aren’t the point. 

Dear persons, why must there be a reason behind understanding that we are all human beings?

As such, do we not all have hearts to care for our fellow beings? 

I once read about a U.S. senator discussing how he was grateful for the hundreds of thousands of dollars worth of healthcare his sick wife received through health insurance. He spoke of how that huge amount of money would have been a stretch for him without insurance, and how he now understands why people need insurance. 

Do the math, senator. For most people, hundreds of dollars, even dollars, in out-of-pocket health expenses would be a stretch. I suppose that’s a rational reason behind healthcare coverage.

But it’s also a heart-centered reason behind caring: Do those less-affluent people care any less about their wives, children, partners, parents—or their own and loved ones’ health and access to healthcare?

Why would it take a direct experience of the need for healthcare to grasp that everyone needs healthcare—and that basic human decency demands that they get it?

Likewise, why would you have to know a [fill in the blank here] person intimately to include them in your species?

Even if we don’t have the empathetic capacity to make such a heartfelt leap of understanding, doesn’t logical reasoning tell us we are all fundamentally similar in the most basic ways? 

For instance, I think we can agree that we all want and need the same things: 

• enough food to eat 
• a safe home to live in
• to be loved and to love
• enough resources to access what we need (and, we hope, a bit more “for special”)
• opportunities for meaningful employment and/or other activities
• people with whom we can connect on what we care about
• to be known as a worthwhile being and treated with respect

I might have missed one or two items (and, of course, some specifics for particular individuals), but it seems to me these needs are 

1. widely if not universally shared,
2. reasonable, and, more importantly, 
3. achievable…if we work together. 

Let’s try this handy test:

Are you human?

Do you believe that other humans are also human?

Do you believe on some level that some humans, say, women, trans people, Black people, Autistic people, and/or members of some other subgroup, are somehow less human than other humans of another group (probably your group)? 

OR do you believe that all humans in general* have equal/shared humanity and worth?

If so, whether you came to this conclusion with your heart or mind (or both), do you believe it’s worthwhile, even imperative, to help ensure that all humans have access to the above basics? 

Do you accept that some of us have certain areas of privilege (such as being white, educated, verbal, male, financially secure, and so on)?

Can we use whatever resources, privilege(s), and/or power we’ve got to advocate for equality? 

Dear readers, I get it: It may feel like there isn’t much you can do in this isolating global crisis. You may feel angry, sad, tired, hopeless. Many of us have all we can handle with work and family alone. 

But the world is desperately in need of healing right now, and ripe for CHANGE in ways we may never again see. It’s an amazing opportunity! 

Know that every small shift toward inclusion, every friendly and/or courageous exchange between mutually human beings, can have huge reverberations. That means any little steps you can take will make the world better for all of us. 

Thanks and love,

Full Spectrum Mama

* Of course, some individuals commit acts that diminish their own and others’ humanity. I’m simply arguing against classifying any subgroup of humanity as less-than based on a single trait. 

GAMING FOR PARENTS

Dear Persons,

Let's play a game, and in that game the rule is, everything I say is annoying and wrong. 

This game is called…The Teenager Game. 

Here’s a brief round from just the other morning:

FSAM* [cheerful and encouraging]: G,  if you have to stay the whole period for your test but are done,  why not use that time as a chance to bring up your grades? You know, work longer on the test after giving your brain a little break. Or ask your teacher what other work you can do! 

G [ultra-sullen/condescending]:…Do you have to talk to me? 

FSAM [caring, thoughtful, respectful]: Z, The writing program ends in April, right? How is your writing going?  

Z [side eye]: We will send it in in April. 

FSAM [confused and/or correct]: Well…doesn’t that mean it’s over?

Z: [shrug].

The Teenager Game is pretty exhausting. Like any parent with teens, I often wonder how to get through to them. Almost everything I say to them is, quite typically, met with disgust and dismissal. 

By the way, how did they get this “grownup,” anyway? 

When I was pregnant and had begun the long process of worry that is a big part of parenthood, an experienced mother of three grown boys told me something that really helped me through my first few years as a parent: “The odds are with them.” 

It was such a simple phrase, but it truly carried me through some rough moments. One kid would get croup and I’d be up at 3am holding him or her, listening to what sounded like a death rattle in a steamy bathroom and I’d be scared out of my wits. Then  I’d think, “Jill told me the odds are with them! How many babies have croup right now? Lots! S/he’s gonna live!” With each wee bit of independence or separation, too, I would start to spiral. Then I would remember: “The odds are with them!” It was such a comfort. 

But there’s a catch now. The things is, with autistic kids — my son, G, is on the spectrum — the odds aren't with them. Without getting into the precise (very daunting) statistics, people on the spectrum are significantly less likely to achieve all sorts of things that typical people mostly take for granted, like independence, employment, academic accomplishments, romantic relationships, parenthood, health. And kids with behavioral and emotional issues, like those my daughter has struggled with due to her attachment disorder, do so much better in the long term when those issues are addressed in their younger years. 

So in this “game” of teenage disaffection, the stakes feel higher in the Full Spectrum household, as they would in any household with differences and disabilities. I have to get through to my teens, since the things most people take for granted will eventually happen for their kids - independence, mental health - are not a given. I have to tread a fine line between accepting that my children are beastly teens, while remaining alert for any signs of impending disastrophes. At the same time, I have to not have a nervous breakdown?! 

So how do we improve the odds? Ideally, while not having nervous breakdowns, not breaking the kids, without the kids breaking themselves, and while presuming competence for all, we will also be able to encourage them and help them flourish as the unique, irreplaceable, precious beings they are. 

And this isn't a zero-sum game. The more our loved ones with differences are uplifted, the more they succeed, the more progress, acceptance, and awareness for all, right? After all, that’s the whole point of this here blog. 

Stay tuned/bear with me as I approach this transition phase, along with my Meeting Friend, and a few other loving yet terrified parents of teens. I will share input from parents and guardians and individuals who have been there as well. 

Love,

Full Spectrum Mama

* Full Spectrum ANNOYING Mama

P.S. FSM has received some good press and stuff lately, and readership continues to climb (at 175,000+ as I write!). I was interviewed, about, among other things, activism, advocacy, and parenting a neurodiverse child as a neurodiverse parent here, at this great site that recommends asking real live autistic people about how they feel and what they want in their lives. Also, I am so honored and excited to have been named a "Top Autism Blog for 2018" - Oooh, I just have to share: "Full Spectrum Mama writes in a refreshingly honest style with beautiful rainbow illustrations that accompany her posts. It’s one of the most unique autism blogs on our list."

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

"REAL" AGE

Dear Persons,

If you have a child or children, do you remember when your first baby was a newborn? Remember that feeling that your life had changed irrevocably and the terror of, well, anything and everything?

Then your child starts to become more mobile and you wonder, what was actually so hard about that baby who couldn’t go anywhere or reach beyond the ends of their arms???

Around this stage, you may also encounter the added bonus of “non-typical development,” which adds a whole ‘nother level to the process. 

Next, usually, your child enters the school system and a whole new batch of fears kicks in, right? (People who are reading this from the perspective of the child and not the parent — or from both positions — may even have memories of this time.) What was so, sooooo hard about the days when you could kiss every boo-boo and make it go away? When learning consisted of stacking blocks and finger painting rather than specific and regimented tasks that might or might not be suited to your child’s learning style, abilities, and/or neurology? When social interactions consisted of taking or sharing playground trucks, healthy snacks, and dress up costumes? 

And then, really suddenly, people, the end of high school looms. I actually find this next stage of transition the very most terrifying of all (I know - aren't I encouraging?). 

Over the years, as I have gotten to know my first child as a human being, my love has grown exponentially from the more-than-I-ever-could-have-imagined level I felt for him as a newborn to There Are No Words. 

And, over those same years, my son has grown — but not in the same ways as his typical peers. He was a giant baby, 110th percentile (which means only 1 in 300 were his size), but didn’t talk much until he was at least three. His apparent physical age far surpassed his actual physical age. People would think he was four or five when he was two, and wondered why he didn’t speak. When he was four and we went to China to bring his sister home, people thought he was ten. They laughed hysterically to see this ginormous child in a stroller (it was 104-degrees and walking was sensorially too much).

Now, intellectually, my son is probably quite a ways ahead of most of his peers. Hormonally, he is right on par. But socially, or common sense-wise? He’s far, far younger. 

We recently visited friends in Cambridge, and G (16) played at length with an eight year old who is also on the spectrum. The other kid’s parents also had a 15 year old, but we all agreed the younger child was a better fit because their 15 year old was “much older” than G. It was wonderful, if inevitably slightly painful,  to be having this conversation with people who very much approached the whole matter from a perspective of total equality and inclusion. 

My love for my second child, my daughter, has grown similarly; and she, too, has grown —  in most ways typically, but she has her areas of difference as well. For example, she was in diapers until she was four years old, which I found exasperating until we figured out that — because she had been in an orphanage — she “needed to be a baby a little bit longer.” When we figured this out, it really helped her to have words for her feelings - and she learned to ask for other things that helped her in this regard, such as being carried or held in her baby sling (she was still tiny well into elementary school). 

My daughter’s emotional age seems quite a bit younger than her social age, since she is the most socially-adept and -powerful person I know. Her common sense “age”? A million. 

How can we assess and address actual, “real” age in effective, accepting ways? 

I recently heard about “the two-thirds rule:” apparently, many people on the spectrum may be seen — as compared to their peers — as developmentally about 2/3 of their biological age. This notion helps in some ways, as I observe my son’s atypical development and hope that he will eventually be able to achieve independence and everything else he wants, much of which seems very far away right now. It makes sense for me, too, since because of my divergent neurology (and perhaps also because of childhood and adult trauma) I only started to integrate and understand some very basic things about life — things most people “get” much earlier — in middle age. But it also seems like a massive generalization and perhaps might also be perceived as a little patronizing. And I don’t think most developmental models incorporate areas in which my son truly excels way beyond most teens, like, among other things, kindness and compassion.  

Once again, I don’t have “the answer.” Certainly, estimating age for a bunch of different categories like those I discuss above (intellectual, social, practical/common sense, hormonal, biological, physical, emotional, developmental, compassion/kindness) and then taking an average of these to estimate someone’s “real” age won’t work. As well, every individual is different, and every stage of life is different for every individual…We might well view age as very amorphous and multiple, and even refer to individuals’ “ages” instead of a single age.

What I do know is that it’s important to take a nuanced approach to “real” age. We need to celebrate and presume competence in areas of maturity and independence, build strengths in areas that are still developing, and accept that some of us will always have differences - whether they render us more advanced or less so - in terms of our skills and capacities. 

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 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

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