Wednesday, September 8, 2021

HOUSEKEEPING (Big news and a SURVEY!!!!)

Dear Persons,

I hope this post finds you well.

 

And it may not have found you as it usually would, as the app that sent out my posts to subscribers stopped working with Blogger. If you’re here and would like to be notified of future posts, try the new subscribe button at upper right. I don’t know how these functions work, but I didn’t understand the old one either. I’m just hoping it will work for you! With almost 300K readers, FSM has been a success beyond my wildest dreams, at least in the connection department (still waiting for the enormous financial windfall so typical of personal blogs about family and differences…). 

 

Lots of other news in Full Spectrum Land. I do hope to have some new substantive posts in the coming months but for now:

 

1.     My first book about neurodiversity is coming out on 2/21/2022. Written in collaboration with Jenna Gensic of the Learn From Autistics blogThe #ActuallyAutistic Guide to Advocacy: Step-by-step advice on how to ally and speak up with Autistic individuals and the autism community integrates more than a hundred interviews with Autistic people to offer guidance to anyone looking to thoughtfully, respectfully, effectively self-advocate, or advocate/ally with Autistic people. 

 

Both Temple Grandin and John Elder Robison have already endorsed the book!!!! I’m over the moon. I’ll get a link up here when it’s available for advance purchase. You’ll also be able to contact the publishers for review copies. WOOT.

 

 

2.     We’ve begun work in earnest on BOOK TWO!!!! This book will cover many of the same advocacy themes but from a teen and young adult perspective, with a special focus on BIPOC, LGBTQIA+, and other intersectional perspectives. 

 

To that end, we are looking for Autistic teens and young adults to fill out our survey, so that we can include the broadest range of voices possible. By the way, we consider self-diagnosis completely valid. If you or anyone you know fits the demographic (that is, ANY Autistic teen or young adult), please click ****here****. 


Feel free to forward this survey link to anyone who might be interested. Please also note that the survey is long. Take your time, use the save/cut-and-paste options if helpful, and absolutely feel free to skip questions that don’t interest or relate to you. The ONLY required question is contact info.

 

Our survey was designed and is being disseminated with the brilliant and powerful young folks at Detester Magazine

 

Here are some links to find out more about it:

 

·      Instagram survey post 

 

·      Instagram podcast post 

 

·      Facebook survey post

 

·      Facebook podcast post 

 

Thanks and love,

Full Spectrum Mama

Tuesday, March 23, 2021

APOCALYPSE TEAM


Dedicated to TC and RS—hearts of gold. Thank you.  And for EBB and XBB, always. 


Dear Persons,

I don’t know why you’re here. Maybe you’re Autistic, or have a neurodivergent child, loved one, family member, student, client, partner…


I do know almost all of us—whatever our neurology—are barely keeping things together in the mental health department, however close we might be to a “jab.”


I know my family is on edge. My partner is older and I have autoimmune diseases. My children have seen me laid low for months by a random virus. I know my kids and I carry this information inside as we watch the COVID numbers and hear about how certain health- and age-related factors increase risk, especially as news of variants calls immunization into question. 


And all kids think their parents are old, anyway, right? And even if not, they’re worried about their grandparents dying. Or afraid their parents may lose their jobs. Or anxious about never being able to be a carefree kid again.  


The other day one of my most solidly NT friends texted me about how obsessed she is with getting vaccinated. 


“You’re so picky,” I told her.  “All neurotic, like, ‘not wanting to die.’ And so spoiled with your wanting to ‘go places’ and ‘have a life.’” 


The thing is, while we are all struggling, many adults are at least able to articulate how challenging this year-plus has been. 


For children, teens, and young adults, the experience is both unprecedented and confusing. However much we try to get things out in the open in our families, it takes more wisdom and self-knowledge than most young people have to process this mess. 


I personally believe simply staying alive this year to be a major accomplishment for anyone. Congratulations, dear reader!


Add in an element of neurodivergence and things can get pretty durn complicated. 


Many of us deal with prosopagnosia or challenges with social cues. If neurotypical people are having a hard time doing so, how on earth do we recognize people or read social cues when people are wearing masks? 


How do we continue to make progress in our social fluency with little or no opportunity to do so? 


How do we avoid falling into a digital-only world? What if that feels safer and easier than the “real” world, especially now?? 


And what if we never fully re-emerge/merge with F2F reality? 


Sound familiar? In my family and my friends’ families, Autistic and other neurodivergent young people are spending almost all of their time online, terrifying their parents and abdicating their school responsibilities while soothing themselves. 


And I know this is not only happening to kids with differences. In fact, I personally know of three neurotypical young people (some of whom were even able to initially do well with remote learning) who have basically given up on school this year. Two of these kids are seniors who were able to rally for two pandemic semesters and just couldn’t do it for a third. 


How common is this? One of these kids has the same name as my son, so I’m thinking…ya. 


Will the colleges they were accepted into last fall agree to ignore their school refusal?


And these kids are arguably the lucky ones, however much their “failures” may reflect underlying stressors. What about the ones overtly living in despair? Heavy depression? Crippling anxiety? 


I’m actually not sure whether my son’s school refusal arises from pandemic-related depression or anxiety, because, like me, he has a hard time knowing exactly how he feels, especially when overwhelmed. Many people with neurological and other differences experience varying degrees of alexithymia, a condition defined by issues with identifying, expressing, describing, and/or connecting with our emotions or those of others. 


This is such a pervasive part of my life that it was only by watching how my neurotypical daughter came to apprehend the world that I even realized it was possible to be so immediately savvy about internal states as they relate to ourselves, the external environment, and other people. Unless I’m in a very, very simple situation, I need a loooooong time and lots of processing (writing, thinking) to know the why and what of my emotions and body states. 


That’s not to say we don’t have feelings! It’s more like some of us (me, my son) are not, in the moment, quite sure why we have (lately, often huge) feelings in our bodies and minds, or what those sensations mean. Finding ways to deal with this can be hard, even for adults. 


My main coping mechanism for this facet of my brain is to keep a ridiculous amount of lists, on paper and in my head. Regular lists, such as to-do lists, but also lists of what is going on that’s hard, or things to look forward to, to counter the challenges. 


It’s a little harder, though, to keep comprehensive, reliable lists with all of the instability and uncertainty wrought by the last year’s political maelstrom and global pandemic chaos.


I was recently zoom-talking with someone about her application to graduate school for a part-time counseling program that will take about five years to complete. 


“That’s great because people are still going to be figuring out how they feel about this year even by the time you get through grad school,” I said. 


Silence…“You think?”


Well, yes, I do. 


I certainly don’t know how I feel about it now. We are all trying to figure this out together, and it’s so intense. So overwhelming. How do we even begin to make sense of stuff we never could have imagined just over a year ago?


A few months ago, I wrote my son’s professors at the wonderful university where he’s had what might very conservatively be referred to as a “challenging” first year to explain some of what he seems to be going through. 


I told them how when he first got home for winter break, I asked my son whether he and other students were experiencing anxiety and other issues because of the pandemic and politics this year. A classic "under-exaggerator," he admitted that students were in general quite worried. He said he'd even assembled his own "apocalypse team." I asked if he was joking and he said, "Kinda." 


I shared that, as a former professor, I have many friends who are in secondary education and they’ve told me that the anxiety level of students is almost unbearable. Like the school my son attends, these schools have taken steps to assuage and address students' concerns during this unprecedented time. Some have even suspended grades in the face of severe mental health challenges in the student body linked to the pandemic et al.


Many, many students’ academic and social situations have deteriorated over this period, not to mention the growing financial and family stressors many of them must be facing.  


On a purely academic level, how well are our students learning? How much of a toll are zoom classes taking on their neurology, their energy, going on three semesters now? Students who need hands-on instruction, who learn through their bodies and senses, who need to see things side by side or interact face to face, are just a few subgroups suffering and losing out. 


I know for a fact if my son could have had in-person help with certain things, not to mention consistently, casually connected and engaged with his teachers and others—and thereby gotten invested in tactile and personal learning, developed some real-world accountability—it would have made a world of difference. 


Of course schools and educators are doing their very best in this context, and it’s taxing to their systems too. But children and young people are being expected to learn in new and untested ways while coping with an underlying dread on a level we’ve rarely if ever seen before. 


When will we be able to truly fathom the full impact of this year-plus? 


The day I sent that email to my son’s teachers, our nation's capitol was under siege from armed lunatics. We were in the car en route to a family hike up a local mountain when we first heard the news.


During said hike, my son would not take his mask off, even when there was no one around. I asked him why. 


"Mom, if I ever am in danger and can't breathe, this will help train me for that," he said. Apocalypse preparation again? Check. 


I'd never heard my laid-back son say anything in this vein. 


A few minutes later, I asked my very sensible, ultra-neurotypical daughter if that sounded like the way her peers think right now. She said, "Trump was elected right when my friends and I were beginning to think about politics. Being scared and everything being crazy is just normal for us." 


Even early on in this pandemic, it struck me very deeply that while many students are building resilience and so on, many, many are facing setbacks with grave, lifelong consequences. 


Now, a few months into the new year, my son’s school has already experienced a major surge, enacted a 10-day lockdown (which, while inevitable and the right thing to do, did not contribute to academic success and/or mental wellness for some, to say the least), moved many classes to remote, and considered closing down. 


Over this period, my son went from enthusiastic and invested in making the second pandemic semester of his freshman year better than the difficult first one to…completely disengaged. He’s found his own way to take care of himself in the melee, and it doesn’t involve a lot of homework. Compared to the devastated states some young people are in, I’m calling that at least a partial pandemic win. 


It’s hard to gain traction when immersed in uncertainty. Some kids, teens, and young adults, typically neurotypical ones, have the skills to adapt or thrive no matter what. But plenty of others don’t. 


Well into our third semester of this pandemic, even many of the young people who were able to rally for the first and second semesters are losing steam.


In fact, the damage this unstable and frankly dangerous situation has done to my son in his first year of college is immeasurable and will be reverberating throughout his life. I hope with all my heart he can recover and find his way again as the world settles.


I hope the same for the millions of other youth who’ve fallen behind academically, felt isolated, become depressed, faced increasing anxiety, and more over this terrible stretch of time.


The wisdom, compassion, and support of adults, especially parents and educators, have never been more crucial for our youth. WE have to rise to this occasion to be their Apocalypse Teams. 


As for the rest, honestly, my theory is that this pandemic year should just be a write off.


Let’s not hold anyone back a year if they want to move forward or kick them out if they haven’t performed up to snuff. Alternatively, let them start the same year over if that’s what they want. 


Let’s put healing and emotional wellness before academic judgment and “success.” I’m saying this as a lifelong teacher, and as a friend of many educators and mental health professionals. As a parent. 


Let’s get kids the help they need without penalizing them for not being able to adeptly navigate a year in which grown as$ adults couldn’t figure out a dang thing.


Love,

Full Spectrum Mama


P.S. VERY EXCITING NEWS: In the next year or so, my co-author Jenna Gensic and I will have a book coming out from Jessica Kingsley Publishers. Our tentative title is The #ActuallyAutistic Guide to Advocacy: Step-by-step advice on how to ally and speak up with Autistic individuals and the autism community.


P.P.S. You know it’s been a rough road when even compiling the LABELS for a post is traumatic. Yikes. 



Monday, December 21, 2020

A WINTER PRAYER 2020



Dear Persons, Dear Universe,

Please take 2020 away.

No, really.

Yeah, we who are reading/writing/praying/complaining are glad to still be alive, yep. Thank you for that. THANK YOU! 

Sooooooo glad...Butno. 

True, we've gained "resilience" and "cozy time at home," but we have also gained "weight," and "climbing the walls," and "possibly not doing so well with remote learning/work."

We feel heartbroken, battered, exhausted, paralyzed. Many of us, perhaps especially those who live with extraordinary challenges (whether medically fragile, living in poverty, disabled, Black in the United States, and/or...), have been stretched almost beyond our capacities this year; some haven't made it. 

And so we ask with all our hearts, with much love and many thanks, simply for a New New Year.

Full Spectrum Mama

P.S. Please consider, beloved Universe, all prior Winter Prayers (2018 and 2017) to be still in pray. 





Tuesday, June 16, 2020

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. 

Saturday, May 23, 2020

PROM NIGHT II—LONELINESS IN A PANDEMIC

Years of meditation practice have allowed me to sometimes approximate a sane person.

The other day, I awoke inundated by cortisol and genuine worries, both pandemic-related and other. I didn’t know how I would get out of bed, much less make it through a very full day. 

Sitting up halfway, trying to muster my gumption to get a move on, a question popped into the tiny bit of spaciousness my meditation practice has created in my head: 

Is there some way I can see this differently?

I didn’t have an answer, actually. But it made a little room in my heart to not feel quite so despondent. Times like these, that's a precious gift. 

Subsequently, I’ve been finding plenty of applications for a “see-this-differently” approach! 

One area that's ripe for a bigger vision? My son's senior year. 

For the class of 2020, there’s no senior prom. No big, festive graduation. I hear that some kids (well, young adults, at this point) are defying social-distancing rules and hanging out without protections. But mine aren’t. Most others aren’t, either. 

And these kids are lonely. All of them. Not just the marginalized kids. Not just the students who don’t “fit in,” or are “different.”

In a way, it’s kind of an amazing moment for the latter groups, I suspect. 

Popular people just can’t be popular in the same ways while sheltering in place. And perhaps people who are often lonely can’t judge themselves (and others) in the usual ways. This is simply how it is—for everybody.

Is it possible that pandemic-induced social isolation actually mitigates the social isolation that so many feel in their usual day-to-day lives? 

I think of my mother-in-law, who—despite having seven living children—rarely sees anyone besides a caregiver who comes for a few hours every day and the one daughter who lives in the same city. 

Now, she must feel less disappointed—because nobody’s seeing anybody. I hope so, anyway. 

I think of my son, who as a junior so assiduously tried to get a date for the prom—with no success. At that time, I began to pre-worry about this year's prom. 

These days, I’ve been asking myself if the lack of prom is actually a great way for those who might not have found a date to avoid a lifetime of that bad memory? 

That said, is social-distancing in some ways a blessing in disguise for students who struggle socially? Especially those who connect better digitally? 

Has this terrible pandemic created online social spaces that are more accepting? 

If everybody is lonely, are some lonelier than others? Or are our children (and elders, and selves) being equally lonely, together but apart? Maybe even experiencing loneliness in ways that might make them (us) more compassionate and inclusive for the long term? 

In other words, is this challenging period in some ways a powerful equalizer? Aside from all the myriad challenges and tragedies, are we finally learning to create a world in which there’s more acceptance and our real gifts shine and we can be free to be ourselves? (I know a lot of wild animals certainly feel that way right now.) 

Also, I'm wondering what will continue to resonate most after we’ve moved through the pandemic—the terrible loneliness and fear, or the unprecedented shared experience of an extraordinary time?

I certainly see how this global crisis exacerbates inequalities around access and economics, and I genuinely fear many of us, and many of our towns and cities, may not be able to recover—for a very long time.I mourn for the hundreds of thousands dead, and for their living loved ones who couldn't be with them at the end.I'm deeply grateful for the many brave essential workers who have risked their lives to keep civilization functioning worldwide. 

Here in my own small, relatively safe universe, I nevertheless experience waves of such sadness, fear, plain-old grumpiness...So I’m trying to see things slightly differently, in the interest of family and community morale, in general, and personal sanity, in particular.

May we in our mutual loneliness find ways to uplift ourselves and each other. Some days, that’s going to be really hard. On those days, may we remember that it's possible to see our lives from another perspective.  

Stay well, dear persons.

You are not alone in your fears or your loneliness or your joys, and you are loved,
Full Spectrum Mama