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

DEAR PERSONS

Dear Persons,

Z has always laughed every time she hears or reads the word “persons.”

I finally sat her down and explained to her that “persons” is a word that has a deep and complicated history. That personhood was for many millennia and in many places reserved for only a certain type of people, such as men, or landowners, or white people, or people of a certain caste or religious faith or neurology...

I explained that even though it might seem silly or old-fashioned when you read or hear that word, it’s a strong word that carries a lot of goodness and respect. That she, as a female of Chinese descent, might -- in many settings over the course of history --  not have been considered a Full Person. That even now she will not necessarily earn as much as a man, or be accorded equal respect.

We are reading Malala Yousafzai’s autobiography, I AM MALALA, together, and she is learning how hard life can be for girls and women in many parts of the world. She has already experienced instances of racism at school. Knowing she’s a Full Person gives her grounding and power to stick up for herself.

This conversation inspired me to begin starting my posts with “Dear Persons,” because my readers are dear to me, and because they are all Full Persons.

Love,

Full Spectrum Mama

DETECTIVE WORK

The Full Spectrums went to see a movie a few weeks ago, which is, in itself, a rarity. We went with my Meeting Friend and her family, and chose the only movie that was playing in a matinee, Mr. Holmes.

During a sad, moving part of the movie where Sherlock is really, really old and feeble and decrepit and does something pathetic, Z suddenly laughed aloud. I cringed. Perhaps she was uncomfortable, but it just felt very awkward and inappropriate...I tried to convince myself it was a mistake, but it happened again a few minutes later during a similar part. Everyone else in the theater was quiet...real quiet.  

“Good luck getting old,” said my Meeting Friend as we left the theater. As we always do, my dear MF and I looked for the bright side: “She’s very practical and realistic!” we assured one another; “Great sense of the absurd!”

On another note, the Full Spectrum children are very into any and all Secret Agent/Detective-y stuff, and were absolutely fascinated by the way Sherlock Holmes can detect things about people just through observation. As we walked back to the car, I asked them what Sherlock Holmes could know about them just by using his powers of discernment.

Z answered immediately:”That I’m a sister, and that I was adopted.”

All G had to say was, “That I’m awesome!” [See forthcoming post, “AND MODEST, TOO.”]

I wanted to hear more from both children, though I found Z’s response quite touching, so I told them, “For me, I think Sherlock Holmes could tell that I am a mother, wife, and artist. Those are the most important things to me.”

“I’m awesome,” G repeated.

“I’m mean,” said Z. Though it’s sometimes true, I don’t think mean is who Z is. I looked at her skeptically. “Well...I can be mean,” she amended.

“Don’t you want to change that?”

“What do you mean?” One thing that IS who Z is is a master obfuscator.

“Don’t you want to not be mean?”

She paused. For a while. “...Yeah.”

“Do you think you can change? I do! You’re just a kid still!”

“I think” – very matter-of-fact – “I will always be a little bit mean.”

“Why?”

“I don’t know, but I can tell I always will.”

“Well...that is something you will always have to work on then,” I assured her. “I know you can do that.”

“Huh?”

Hmm. Guess that conversation was over. (WHO, exactly, is in control all up in here?)

When I started writing this blog, I did not know anyone “like us;” I felt alienated, alone, and, much worse, so confused about parenting my two very different – from each other, from the “norm” -- children.

I felt like a failure in the most important role I’d ever had: motherhood.

I did not know, back in the day, that Z’s seemingly cruel laughter, her obfuscation, her self-proclaimed meanness are all attachment-disordered behaviors. I would have blamed myself for not raising her to be kind...I would have blamed her for being unkind and manipulative.

A number of factors (my own kinds of detective work: reading, researching, developing an online community, meeting others through the blog, finding a good specialist in attachment disorders, having a Meeting Friend) have helped me to become someone who is able to share the fruits of my detective work  in hopes of reaching people who feel as I have felt in the past (confused, alone) and feel now in the present (confused, alone, AND inspired, connected, and – every so often – just a little wise in my old age).

As for Z, if I were to name a third fundamental aspect of her identity that Sherlock Holmes might have discerned, I would say that she has a fabulous, quite broad sense of humor. That may be her, and OUR, saving grace.

Love,

Full Spectrum Mama

WHAT IS PROGRESS?

I read a lot (a LOT) of posts – whether in adoption communities or neurodiverse ones - about how people’s children are “making progress.” Progress with sensory differences is one major theme, and uplifting, inspirational posts can be found in abundance. I find a lot of news around “progress” with a range of challenges in autism as well.  Since I tend to only follow writers who start with the basic assumption of accepting their diverse selves (and the diversity of their children) unconditionally, as they are, I typically enjoy such posts, and think they give us all hope.

I've read and learned a lotlotlot about adoption and attachment disorders, too; and I'm grateful to have done so since it felt like we were desperate and failing as a family until we gained some context and strategies for my daughter's behaviors. For Z, who was adopted and has struggled with an attachment disorder, progress means healing - gradually - enough to let go of attachment disordered feelings (distrust, panic), and the habits and actions that come with those feelings. Progress, in Z's part of the Full Spectrum, is a unilaterally good and necessary thing. 

I think a lot (a LOT LOT) about how much I do for my son, who is on the autism spectrum and has motor and executive function challenges, compounded by raging teen hormone fog (that’s a medical term). I wonder how much my “help” is actually enabling him -- in a codependent, non-helpful way -- to not learn how to do things, take responsibilities, etc. I try to remember that, but for safety concerns, it’s generally best for him to learn to take responsibility for himself and do his own stuff (dishes, cleaning, “organizing”...) even though he may actually make a much bigger mess doing so...

He’ll never learn to live even partially on his own if I keep waiting on him hand and foot – something I do basically because it’s easier for me. As G takes on more day-to-day tasks, that is PROGRESS – and it’s a good thing.

He’s also made huge strides socially, verbally, in athletics...His momentum in all these areas is a testament to his hard work and efforts.

As a neurodiverse adult, however, I sometimes question a narrow view of the necessity and function of progress. I also I see myself making so much less “progress” than my son does…

Big breath.

I wonder if, for me, it’s at this point more about acceptance, whereas for him he’s still growing so, so much.  While his presence during this period of great growth certainly benefits those around him in increased awareness and good company, it’s primarily about him. Teaching people is not his job, being his best G is his job.

My job, as his mother, is to help him become the most content, competent person he can be, while respecting his unique wonderfulness. I would also like him to “progress” in self-advocacy: both in learning what he needs to succeed socially, academically, and so forth, and in being able to express those needs in order to grow into who he wants to be. In any case, much as he has never, ever been interested in even the slightest efforts at “passing,” he wins most people over with his exuberance and huge heart and humor.

Me, I’m still growing inside to some extent, but my PROGRESS is really more about learning about neurodiversity and spreading that awareness, as well as advocacy in general -- and for my son and me.

In images, I think it might go something like so:

Figure I – Progress for G and Z

Figure II – Progress for Mama

Like so many phenomena, progress may be viewed as a Spectrum: for my daughter, it's a straightforward positive; for my son and me, it's more complicated. We need to make sure that our attempts at progress are in line with our inclusive values, rather than succumbing to the biased standards of a neurotypically-inclined mainstream. Ideally, my efforts at public advocacy, along with those of others in this blog hop and beyond, expand the possibilities for defining -- and celebrating  -- our own progress, goals, and selves.

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

MIDDLE SCHOOL PRAYERS REVISITED, REVISITED

I take it all* back. I am terrified.

Universe, please watch over and protect our bumbling, quirky, not-so-grown-up, growing up children as they head back into the fray.

Thanks and love,
Full Spectrum Mama

* http://fullspectrummama.blogspot.com/2015/08/middle-school-prayers-revisited.html

LEAN IN, SPD STYLE

Picture my physically adept daughter sitting at the dining room table. She is leaning back in her chair with her feet up on said chair. I remind her that feet are not allowed on chairs at the dinner table. She removes her feet...but somehow manages to retain the exact same lean, with an expression of utter disdain and indifference.

Now picture me sitting at a different table, working in the faculty lounge of the local community college. You will notice – but I will not, at least until my neck pain tells me something is off, several hours in – that I am sitting at an extremely awkward angle.

 

                           Figure I – Awkward and Ultimately Injurious Angle of Seatedness, Not Noticed

Those of us with sensory processing differences may find ourselves in a myriad of awkward and uncomfortable situations/positions because of our divergent vestibular and proprioceptive systems, the systems that tell us where we are in space and how our movement and body location relates to what is around us.

Whereas my daughter Z’s balance, movement, and self-awareness in space are appropriate and allow her to do things in healthy, if sometimes snotty, ways, I fear I’d be barely able to function without my many, many years of ballet and yoga.... G’s study of Tae Kwon Do has done similar remediation for his vestibular, motor, and proprioceptive functioning.

I was uncomfortable sitting there at a random angle from the table, but I am so used to feeling awkward that I didn’t even wonder why, or take steps to address my discomfort, until my neck pain began to eclipse my concentration. When the normal smells and lights and sounds of daily life hurt your brain, what’s a bit more pesky input?

Becoming aware of these goofy and discomforting phenomena is the first step in trying to devise ways in which to avoid actually harming myself. But here’s the thing: mostly, I don’t even know I am doing things “differently” until something lets me know – another person (“Hey, [FSM], why don’t you put on a sweater, since you are shivering?” “OHHHHH! Great idea!”), or actual pain...

What other things do G and I do like sitting at wide angles to tables? I don’t even know. Probably plenty! Do you know a wide-angle sitter? A curb-tripper? A walker-into-walls?

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! Want to join in on next month's Sensory Blog Hop? Click here!

An InLinkz Link-up

MIDDLE SCHOOL PRAYERS, REVISITED

As people and as parents some of us are lucky enough to have a perfectly generous level of empathy for others as well as a balanced perspective on events. Others of us learn to understand others’ feelings and have perspective on our own lives the hard way(s).

Last year saw G’s heretofore good grades plummet, but he was accepted and happy at school. It was clear that G had chosen, consciously or un- to put all his energies into that realm of his life that had for so long been an area of suffering. For a “typical” parent with an academically gifted kid this would be a disastrophe but the perspective and experience I’ve gained (kicking and screaming) about my kid show me that a decline in grades is a small price to pay for the gains he’s made in confidence and self-esteem.

By the end of last year, G’s team had begun to identify effective strategies for executive function and focus in order to improve his academics; and I am very much hoping we can bring more balance between the social and the academic this year in 8^th grade. That’s going to be a tall order, but at least I am only mildly terrified this year. (Sure last year was a social success, but there can be so much drama in middle school, for middle-schoolers of all persuasions, and peer-group rejection is so common.)

Here are two posts I wrote around this time last year, in case they are of use to any readers:

            This one is about my deep terrors for my son as he entered Middle School:

                        MIDDLESCHOOL PRAYERS 

This one is about trying to find other kids who might be extraordinarily challenged entering Middle School:

                       TEAM FRIENDLY FACE 

And here’s an inspiring thought from a VERY WISE Dad I know and love, from his facebook page (posted with permission, lightly edited for anonymity); it helps me remember that I know my child and I know what he is capable of...:

Happy birthday to my son [name]. Apologies for this post, son, but “I had to say it.” The year that he was age 3 I was on lecture tour. In Indiana he was the only black child in childcare. After my talk a teacher said, “I’m sorry to tell you, sir, but your son is slow.” The next week in New Hampshire a different childcare teacher said, “Wow! Your son is brilliant.” I’d already played a significant role helping parent my three much younger brothers and [name] is my second son. I knew he was blessed. Now he has a bachelor’s from Princeton and both a Ph.D and J.D. from the University of Virginia. At no point did I give permission to some stranger to define my child (or his 3 brothers). If you’re a parent, grandparent, teacher, friend... I suggest you follow the same route. You have to nurse greatness to find greatness.

Obviously, blessings and greatness come in all stripes and do not necessarily mean academic blessings and/or greatness, but I plan to nurse the academic aspect of my son better this year, along with his great heart -- and I plan to make sure the rest of his team does the same.

Wishing all parents and students and teachers and staff many blessings for a smooth transition into this next school year. People who are already fully-equipped for school should not be posting that on facebook and making the rest of us feel inadequate.

Remember, if we do not believe in – and nurture! -- the unique greatness of our loved ones and children, who will?

Love,

Full Spectrum Mama