Tuesday, December 13, 2022

"I Don't Remember You Being So... Autistic"

Christina-Marie, a pink-haired female-presenting person wearing hearing protection.
Image is of me, a pink-haired,
female-presenting person
wearing a black and white top
with a black and pink scarf and
pink over-ear hearing protection.
Background is lilac-colored.

Believe it or not, there are people in my world who still have a hard time accepting that I am autistic, because it doesn't fit with their memories of me in childhood or early adulthood. Some of those people have openly stated, "You never seemed autistic to me." Sometimes, I get the feeling they intend such a statement to be a compliment (it isn't). Other times, it seems to be more of a statement of doubt regarding my diagnosis.

There are others who are able to easily accept and understand that I'm autistic and always have been, but some have suggested that I've become "more autistic" over time. Is that even possible? I mean, being autistic isn't like being caffeinated. I haven't just been pouring myself an extra cup of The Autism every morning for the last few years.

Here's what I've come up with:

I'm exactly as autistic as I have been since birth. However, what those folks from my past remember as me being not-autistic or not-as-autistic is actually autistic me, in younger form, with more energy and desire to mask my neurotype and try to "pass" in an allistic (non-autistic) world. 

Whether they know it or not, what those people are saying is:

You used to put in more effort to make people like me feel more comfortable with you, despite the toll it took on your emotional, physical, and mental health.

The thing is, I never did "pass." I was always treated like an outsider by most of my peers, and the few people who did accept and value me knew exactly who and what I am. Maybe they didn't have a word for it ("autistic"), but they knew I was different than most people, and assimilation was not a requirement for their friendship. 

It took me a long time to realize two important things: First, the energy I spent attempting to appear like others was wasted... I would never be an insider to certain groups. Second, there are people out there who do not demand that energy as a condition for acceptance. 

Those two realizations were life-changing.

No one outside my home knew it, but I could barely get through the day at school when I was young. I would come home and completely melt down--often in violent, harmful ways. I didn't have the knowledge or tools to understand why it happened, and I wished so very much that I could control it, but I couldn't. 

When I went off to college, there was no "home" to melt down in. My campus was very active and involved, and cultivated a climate of connection, so there was a lot of pressure to be social at all times. By the end of the first year, I was so burned out I had to drop out. 

Entering the workforce as a young adult was much the same. I had to get through each day, engaging with coworkers and clients or customers, until I could break away and break down. My "melt down" actions took different forms, and self-destructive or risky behavior was often how I dealt with the emotional toll of feeling like I had to be "on" all the time. 

As we grow up, a lot of societally-enforced messages about socializing and interacting with others are either precisely and methodically taught, or reinforced through aversive responses. That is, we are taught to say "please" and "thank you" and to share our things directly, but we are indirectly taught things like forced eye contact ("Look at me when I'm talking to you!"), that we must refrain from oversharing about our special interests ("Give it a rest, already! No one cares that you like to read about serial killers!"), and that we must--at all costs--try to behave, dress, speak, and present like our allistic peers ("Maybe they wouldn't tease you so much if you made more of an effort to fit in.").

The result is that every interaction ("Good morning," for example) is dominated not by the external connection but by internal struggles and conflict. 

Am I making enough eye contact? Too much? Am I staring?
Am I talking too much? Not enough? 
Is it my turn to talk? 
Are they getting angry? Bored? Annoyed? 
Stop fidgeting! 
Look at them when they are talking to you! 
Don't talk about serial killers!
Act interested. It doesn't matter if you aren't.
What does "interested" look like?
Pay attention!
Don't stare!
Look at them when they are talking to you!

Add to that the pressure to make and have friends, when such relationships are confusing and confounding. Autistic kids and young adults are often taken advantage of because we are taught a lot of "rules" about making and having friends, and we assume that if we hold up our end of the deal (Be Kind. Share Your Things. Be Helpful.), other people will automatically be our friends. And when we think a person is our friend, we will often do what that person wants without questioning because we assume everyone follows the same rules about making and having friends. We may also make inappropriate overtures, such as gifting an expensive or personally precious item to someone who we think is our friend. The problem is, that person may or may not consider us a friend, and such overtures clue allistic peers in to the extent of our desperation for acceptance and make us targets for exploitation. 

The pressure to be accepted may never fully go away. I'm convinced of that. I'm 47 years old and it still hurts when I'm rejected by peers after I've followed the "rules" of making and having friends. It isn't so much that I truly need those relationships as it is that I've been conditioned to believe I need them, so the failure to cultivate them feels like personal failure. 

However, a couple years ago, I stopped trying so hard.

Despite the loss of a household member to COVID-19, the rest of the world shutting down proved to be incredibly healing for me. I no longer felt pressure to be "on" all the time, and my mental health improved.

I realized it was the culmination of an incremental process of letting go of my own expectations that I would be able to assimilate into allistic culture, as well as eradicating my tendency to capitulate to the expectations of others. I had slowly been putting less pressure on myself to hide who and what I really am, and learning to embrace my true self. 

Shockingly, I didn't fail to succeed. I honestly expected to, but I was so weary I didn't care. I'd grown up believing that if I didn't "at least try to fit in" and meet the social and communicative expectations of others, I would be not only alone, but also barred from any opportunity I might want access to. 

I went back to college during the 2020 shutdown, but I did it on my own terms.

I reached out to every professor before courses started and introduced myself. I told them I'm autistic, and what to expect from me in terms of communication and interaction. I told them my communication is sometimes considered blunt, but it is always honest. I stated eye contact is difficult for me, and lack of it should not be taken as lack of attention because I hear and learn more when I'm not forcing myself to maintain it. I told them what my needs are in terms of receiving communication and specifically, critique: Direct is best, because I won't pick up on suggestions offered gently. I told them what accommodations I qualified for through Disability Services, and accommodations I need that Disability Services can't offer me. 

I figured I'd just put it all out there, and take the pressure off myself to be or behave in any way that was inauthentic. If I was met with rejection, so be it, but I wasn't going to add the stress of having to "perform" as an allistic-passing person to the stress of being a non-traditional student who was already juggling parenting of multiple kids with newly added college commitments.

I wasn't rejected. 

Instead, I was thanked for the frank and productively critical disabled rights perspective I brought to classes. My work and talents were appreciated. Although I had a hard time relating to many of my classmates who were the ages of some of my kids, I found connection with several of my professors, and learned I am really, really good at a lot of things when I'm not distracted by forcing myself to behave or present in ways that are not natural for me.

I've even made a few authentic friends, and it's comforting to know and understand the parameters of those friendships. There are no surprise rejections because they began with me being open about who I actually am, rather than a forced, performative version of myself I will ultimately be unable to maintain, longterm. 

Living authentically and openly autistic has been personally freeing, and it has opened far more doors for me than trying to "fit in" with a culture that has overwhelmingly rejected me in the past.

It makes some people uncomfortable.

It makes some people think I've become "more autistic" over time.

It's distressing to some people that I don't do more to make them comfortable around me, as I have in the past. 

It makes some people think they are invited to critique my deliberate and conscientious decision to not cultivate in my autistic children the same lifelong pattern of self-abuse I developed. I am not interested in forcing them to mask their autistic behaviors, communication, and ways of experiencing the world. I don't teach them they need to change. Instead, I try to teach them about what I've learned about allistic people, and tips for engaging with them, when we must, without compromising or apologizing for who we are.

I received a letter from my mother-in-law last year, detailing all the reasons she thinks I am failing my children, and all the reasons why people "hate you... but would never say so." Most of the things she listed were to do with my (autistic) communication style and ways of being in the world, whether she realized it or not. Her assessment was that she thinks I need to "find Jesus." (Been there, done that... dig far enough into my blog or read my first book and you'll find it, along with some seriously misguided political beliefs that I've since disavowed.)

I've found myself, and it's enough.

I am enough.

I'm exactly as autistic as I have been since birth. That hasn't changed.

What has changed is my willingness to compromise my own well-being--and that of my children--in order to gain the acceptance of people who are never going to fully grant it, anyway.

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Monday, January 6, 2020

Prioritizing My Health Means You Won't Be My Doctor, If You're Not Trauma-Informed

[Image is white text on a dark gray background. Text reads: "I need you to stop crying. It's making my job more difficult." -- Some asshole doctors I've had to see. Watermark at bottom is for TheGonzoMama.com]
[Image is white text on a dark gray background.
Text reads: "I need you to stop crying. It's making my job
more difficult." -- Some asshole doctors I've had to see.
Watermark at bottom is for TheGonzoMama.com]
CW: This post contains discussion of gaslighting by medical practitioners, child sexual abuse, rape, and other topics that may be difficult to read, for some readers.

Today, I'm going in for my first pelvic exam in 14 or so years. During that lapse in care, I've convinced myself that I'm dying of cervical cancer on more than one occasion, but even that fear hasn't prompted me to return to the stirrups.

Not after what happened, last time, in 2006.

There I was, in a horrible gown that did nothing to preserve my dignity, on my back, with my feet at an awkward elevation. The (male) doctor forcibly pried my knees apart as I cried and apologized, trying to explain that I was sexually abused as a child, and raped on more than one occasion as I got older.

In the best way I knew how, at the time, I was begging for understanding and accommodation. I received neither, and I wasn't well enough versed in self-advocacy to stop the exam, and walk out.

Neither was my husband versed in survivor advocacy, as he sat beside me, holding my hand and trying -- unsuccessfully -- to soothe me.

When the doctor told me to stop sobbing because "it's making my job more difficult," my husband doubled his efforts to try to calm me, but they weren't working.

When the doctor said, "This is part of being a woman. Millions of women are able to get this done, every year... Why don't you suck it up, so we can get this done?" I didn't protest.

I dissociated.

I left the appointment feeling as violated as I did after being raped, and vowed never to go back.

And honestly, I wish that was the only time I experienced gaslighting by a medical provider, due to my personal trauma history, but it wasn't.

Last year, after multiple visits to my primary care provider for a string of mysterious -- but serious -- symptoms that included unbelievable fatigue, weakness, migrating piercing pain, and the inability to walk some days, I begged him for a referral to Neurology, or Rheumatology, or both.

I was pretty sure I had fibromyalgia, and I created a list of my symptoms consistent with the condition, as well as evidence I found online linking Post-Traumatic Stress Disorder (PTSD) with fibro.

"I know my body, and something isn't right," I said.

"Well, you ARE at the age (44) when things in the body start changing. There's a good chance this is hormonal," he said.

"No. You don't understand. I can't pick up my toddler. I can't stand at the mirror long enough to put on makeup. I can't lift my wok to cook dinner. This isn't normal."

"Here's what I think," he said. "I think you have a great deal of unresolved stress in your life, and it's manifesting in what we call Somatization Disorder, or Somatic Symptom Disorder. Do you know what those terms mean?"

"They mean, basically, that it's in my head, right? That my mental state is making me physically sick. That I'm literally sick in the head, and it's fucking up my body. Do I have the gist of it?"


"Listen, here's the thing. Other than my body not working, I'm on top of the goddamn world. The legislation I've been working on the last five years finally became law. I'm doing well in my business. I have friends and supportive social connections. I just want my body to work. THIS ISN'T NORMAL."

"I think you're really underestimating the effect that stress has on your body. Especially since you have a PTSD diagnosis," he said. "I'll give you a referral to a psychologist, but that's the only referral I'm going to give you. You haven't reported anything to me that warrants a referral to either neurology or rheumatology."

I started sobbing and crying, uncontrollably. I was so frustrated at not being listened to, and not being heard, I couldn't do anything else. I tried to protest through the heaving sobs, but he interrupted.

"See, this is what I'm talking about. Your emotional response is not in line with the situation. This is a VERY concerning amount of emotion, and it's overwhelming for me."

For him.

My emotional response to being talked over, gaslighted, and unheard was overwhelming for HIM.

I kept the appointment with the psychologist, who spent about ten minutes with me before essentially saying, "Oh, no, honey... This doesn't sound like somatization. You need to see a neurologist or rheumatologist." And then she put in the referral.

A few weeks later, after a ton of tests to rule out other possible causes, I received a diagnosis of fibromyalgia.

To no one's fucking surprise.

I mean, thank God the "gatekeeper" was trauma-informed, and refused to actually BE the gatekeeper my primary care provider had hoped she would be.

I'd been looking for a new therapist, anyway, since my old counselor is awesome, but I had to pay out of pocket, since he doesn't bill insurance. I asked the psychologist if she'd do therapy with me, and she agreed. I really like her, and think I'll continue seeing her for the long haul.

But last year really was a turning point for me, when it comes to what I will and will not tolerate in my health care.

And the number one requirement I have for all providers, now, is that they MUST be trauma-informed.

What does that look like?

Well, for me, it means my history of trauma won't be used "against" me, to overlook real and concerning symptoms.

It means providers won't touch me without warning or permission.

It means I won't be shamed for avoiding certain practices or providers, due to traumatic response.

It means I won't be gaslighted.

It means I won't be made to feel inferior because I struggle to endure invasive procedures that others are more easily able to cope with.

It means my provider will actually listen to me, and not dismiss my concerns, opinions, and wishes, when it comes to my care.

It means that my provider will understand and not be punitive if I have to stop a procedure, take a break, or leave and reschedule.

It means that my providers will be willing to work together for my safety and comfort -- like when my therapist made a point of contacting the midwife who will be performing my pelvic exam to discuss possible triggers, and how to accommodate for them.

It means I will receive care, on my terms, from providers who see all of me... not just my trauma history.

In my opinion, ALL providers should be trauma-informed. After all, a majority of patients they will see have Adverse Childhood Experiences (ACEs), or will have survived physical or sexual abuse or assault.

I deserve better understanding and treatment than what I've experienced in the health care industry, and so do you.

My health is too important to be put on hold out of fear. And so is yours.

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Friday, November 1, 2019

#AutisticsSpeakingDay: Growing Up Autistic Without a Diagnosis, and the Importance of Community

The author as a young child, with blonde hair and dressed in a pink jacket with a pink faux fur collar. She is looking down at a red rose.
Me as a young child, with blonde hair and dressed
in a pink jacket with a pink faux fur collar,
looking down at a red rose.
CN: mention of suicidal ideation

On Autistics Speaking Day, it seems appropriate to reflect upon the importance of community, but in doing so, I couldn't help but think about what life was like, before I found it.

I was not a child who was indistinguishable from my peers.

Instead, I was a child who stood out for various reasons:

My mom says when I was a toddler, I didn't point out things that were readily apparent to others. That is to say, when we were in the car and drove past a herd of cows, I didn't point, and say, "Cows!" because obviously, there were cows. Why point it out? Everyone can see them, so what's the purpose of exclaiming the obvious?

When I did speak at that age, people thought I was older, because I spoke like an adult. And that "tiny grown up" perception followed me throughout my childhood and youth, and a lot of times, it stood in the way of making friends, because kids my age thought I was arrogant, or weird, based on the way I spoke and tried to engage.

When I started school, I interrupted and corrected teachers and other students, and never understood why that was viewed as rude, disruptive, or inappropriate -- and certainly never understood why I was reprimanded or disciplined for it.

I had vocal and physical stims that were pointed out and mocked so many times by teachers and fellow students, I learned to try to stifle or hide them. I'll never forget my fourth grade teacher -- noticing how I scrunched my nose repeatedly during silent reading -- calling out from her desk at the front of the room, "That's not attractive, Christina-Marie." The entire class, naturally, turned to look, and laugh.

I tried to pretend to like the things my peers liked. I tried to look the way my peers looked. I tried to talk like my peers talked. I devoured "girl culture" magazines, like YM, Teen, and Seventeen, hoping to unlock the secret to being accepted by the other girls, but nothing ever "fit."

I did have a scant few friends that included me, but I always felt like an outsider, and worried so much that if I stopped trying so hard to be like them, they'd reject me. I probably imploded a lot of connections, either due to tiring of masking and pretending, or just sheer anxiety over what I imagined as inevitable... it's easier to walk away, than to be pushed away, you know?

I never figured out how to fit in with other kids, and I always preferred books to people, because books were never complicated. Books never had indecipherable expectations.

Teachers were equal parts fascinated, and frustrated, with me. If a subject interested me, I would dive into it voraciously, going far beyond the assigned coursework, but often became so fixated on a topic that it was difficult for me to "shift gears" and move on. And my struggles with executive function were hard for them to see, until they caused a "crisis."

For example, my senior year, my English teacher -- who recognized that writing poetry was my jam, and that writing reports on books I'd already read several times was not -- assigned me to an independent study for the second semester. "Go publish a book of your poetry," he said.

I spent nearly all of the semester studying publishing, design, and layout (instead of writing content) because I wanted the finished product to look great, lost a lot of my notes and original work, and ended up scrambling the last week of the semester to throw something together. It turned out really shoddy, and I could tell he was disappointed, but when I tried to explain how difficult it was for me to manage my time and materials, he didn't understand. He'd expected more from me, and I couldn't figure out how I'd failed so completely.

And there always seemed to be rules about how to be in the world that I didn't understand.

Be honest! But not too honest... don't tell someone you think their haircut isn't flattering, if they ask you what you think. Instead, say, "Wow! It's so different!" or something like that, because it's rude to say, "I liked your hair better, before."

Be yourself! Unless your "self" is the kind of "annoying" person that doesn't know how to wait for their turn to talk. Or unless your "self" is a person who speaks or acts differently than their peers. You should at least TRY to fit in! 

Express yourself! But not like that. No, don't do that. I mean, express yourself, but don't expect people to understand you, if you do it like that. There is something to be said for conformity, at some level. Conformity keeps you safe. Non-conformity makes you a target.

Follow the rules! But not all the rules need to be followed, all the time. Some rules are more important than others. And some people don't need to follow the rules, and sometimes, there are rules that you won't know, until and unless you fail to follow them.

Most of my childhood and youth was lonelier than anyone knows.

I spent equal amounts of time trying to be noticed, and trying not to be seen.

I entertained thoughts of suicide more often than I'm comfortable admitting.

"Why can't I...?" was a common mantra of self-hatred.

Why can't I make and keep friends?
Why can't I fit in?
Why can't I say the right things?
Why can't I do the right things?
Why can't I figure out why they don't like me?
Why can't I JUST be happy?
Why can't I JUST be "normal?"
Why can't I just... be accepted?

Not being diagnosed as a child created a fantastic incubator for self-loathing.

I never felt "seen" for who I was, and I could never figure out what was "wrong" with me.

Learning a few years ago that I am autistic was like a baptism, if you believe in that sort of thing. It washed away everything I thought about myself that had come before -- even if it didn't erase the scabbed-over pain of rejection and being mocked. It made me new, and whole. It gave me hope.

It also gave me community. And inspiration.

It gave me the type of friends I so longed for when I was younger -- friends who understand, respect, and celebrate who I am.

A welcome byproduct of that discovery was that it helped me to reconnect with and establish fresh relationships with people from my youth. No masks. No posturing. No more longing for friendships based on projection. Just, "Here I am. My world is quite lovely, and you're welcome to be part of it, if you'd like."

I am more comfortable with who I am, and the world around me, now that I've been able to connect with autistic peers and mentors.

That comfort and security are now so much a part of my being that I have no hesitation advocating for myself, or my children, when I or we need accommodations. I make no apologies for the way I need to access the world, and I don't encourage my children to, either.

It is so vital to me that my autistic children not only have a strong sense of identity, but also a fierce sense of community.

I never want them to struggle with trying to exist or behave in ways that are not genuine to them, and I never want them to feel like they have to hide parts of who they are, in order to be accepted, or listened to, or heard, or respected.

It is boggling to me that some parents don't want their children assessed for autism, or don't tell their children they are autistic, because they "don't want to stigmatize them."

To me, the only stigma surrounding autism is from people who don't understand it, or accept it.

To me, not knowing I was autistic was so much more harmful and painful as a child and young adult! Because I didn't understand who I was, I wasn't able to connect with the world in any sort of genuine way, and it was lonely-making.

I still struggle with things, at times. Identifying and explaining my emotions, for example. Working through and expressing those emotions, if I can identify them.

That's one of the reasons I started seeing a new therapist, recently.

She didn't have any real background on me, outside of knowing I was hoping to find a counselor who is trauma-informed, and knowing that I had experienced some significant gate-keeping by a medical provider, earlier this year.

She made notes as I went through a short list of topics I'd brought.

At the end, she said, "I'm looking over the notes I've made during this session, and I'm curious... Have you ever been assessed for autism?" I hadn't mentioned being autistic to her.

There wasn't a note of pity in her voice. There wasn't any pathologizing. It was strictly an acknowledgement of how I communicate, and of who I am, and how I relate to the world.

She sees me.

I explained how I'd found so much support in the autistic community, and she celebrated with me.

I knew I'd found a safe place. I'd found a place where the need for community is not only acknowledged, but when it is found, it is celebrated, and recognized as a strength.

The autistic community gives me strength, and so much more.

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Wednesday, September 11, 2019

Today, and Every Day... We Remember

In 2009, I signed up for a cooperative blogging project called Project 2,996.

The idea was to ask bloggers across the country to each choose a name from the list of 2,996 lives, tragically lost on September 11, 2001, and write a tribute to that person's life.

That year, I asked to be assigned a name at random.

I didn't anticipate the magnitude of the feelings that would consume me as I researched the life of the person belonging to that single name.

That particular name was inextricably linked to another name on the list -- a spouse -- who was also lost, that day.

Such is the case with tragedy, and especially one of the caliber of devastation that occurred on 9/11/01.

Some families lost several loved ones, that day.

In some cases, folks who had been best friends since childhood perished together on their way to a vacation.

Even those who did not pass with a loved one by their side are still linked, through tragedy. All those names... all those names... all those names weave a tapestry of grief and loss.

However, that tapestry is created of individual threads: each unique, each relevant, and each vibrant.

It is those individual threads which Project 2,996 seeks to recognize and pay tribute to.

Who were they, before they were a name on a list? What did they do, and who did they love, and how is the world changed by their existence -- rather than changed by their death?

And so... we remember.

We remember each soul, each life as it was lived, rather than how it was taken.

Over the years, I've learned about more lives, and added more tributes. When I visited the memorial at Ground Zero in NYC a few years ago, I sought out the memorial plaques for those whose tributes had appeared on this blog.

It was lightly raining, and the gray afternoon sky folded over me like a blanket as I touched each plate, my fingers tracing the etched names.

"I know this person," I whispered.

I'd never met any of those people, of course.

But I knew them.

I spent time learning about their lives, re-reading their tributes each year, committing to memory the details their friends and families shared.

I may never have met them, but I know them.

I hope you'll take the time to know them, too.

Here's a list of tributes which have appeared on my blog, as part of Project 2,996:

 Please take the time to read and share their stories.
And, above all, please... never forget.

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Monday, September 9, 2019

Teaching Kids About Neurodiversity and Self-Advocacy

Image is of almost-13-year old Snugglebug, a female person with dark hair and green eyes, with her mother, a female person with pink hair and green eyes. They are both smiling at the camera.
Image is of almost-13-year old Snugglebug, a female person with dark hair and green eyes, with her mother, a female person with pink hair and green eyes. They are both smiling at the camera.

Update 9/10/19:

I didn't expect for this post to be so widely-read, but I am glad that it has been, and continues to be.

I would be remiss if I didn't point out the ways folks can promote understanding and acceptance of neurodiversity in their own communities.

The first thing, obviously, is to talk to your children. Make conversations about neurodiversity part of routine discussions in your home.

Another powerful thing you can do is to support neurodiversity libraries in your area -- and beyond.

If you're so inclined, please head to Facebook to "like" my brand-new neurodiversity library, North Central Washington Library for Education on NeuroDiversity (NCW LEND), and -- if you're able -- please consider sponsoring a book from our library wishlist on Amazon. Thank you!


My Snugglebug will be 13 in a few short days.

I love this age -- this stretching of wings, testing of boundaries, questioning of All The Things. It's pretty amazing to see a once-child morphing into an almost-adult, and begin to embrace their passions.

Snugglebug is simultaneously blessed and burdened by an abundance of compassion, empathy, and understanding of social justice.

I say "blessed," because it is a notable gift to instinctively see all people as worthy of dignity and respect.

I say "burdened," because... Because sometimes, the world is a pretty overwhelming place for those who are attuned to the mistreatment of others. Once injustice is seen, it can't be unseen, and when it's everywhere... it can make a person begin to lose hope.

That being said, Snugglebug is a fierce self-advocate, and an advocate for others.

This space -- this time of life -- she's in is simultaneously beautiful, and raw.

She's full of energy, right now, and tackling ableism every time I turn around. She knocks down one challenge, and is immediately ready for the next. I have to remind her sometimes that a little bit of down time for self-care and spiritual nourishment is not only okay, but necessary.

Snugglebug is neurodivergent. That is, her neurology falls outside the societal expectation of "normal." She has an Individualized Education Program (IEP) at school, which provides reasonable accommodations for her to access and navigate her education.

We've made a point of including her in IEP meetings and discussions -- even before she felt ready to significantly contribute her own ideas. This was, and is, important to us, because:

  • We presume competence in our children.
  • We want her to see advocacy in action.
  • We want her to see her parents and others standing up for her, and that she is worth advocating for.
  • We want to model to her effective language for self-advocacy, when she's ready to use it.
  • We want her to have a voice in plans that involve her.
  • We value her input, when it comes to effective strategies and accommodations for her. She is the authority on her own lived experience.
  • We want her to hear and know what is in her plan, so she can self-advocate when it's not being followed.
You see, I am NOT my daughter's voice, nor is any other parent the voice of their child.

Our job, as parents, is to help cultivate confidence in our children, and to amplify their voices until they're ready to independently assert themselves... but never to speak FOR them.

We talk a lot about neurodiversity in our home. 

We talk about how differences among brains and development are normal within nature, and among humans. We talk about how some people are good at certain things, but might need support to do other things. We talk about how everyone -- no matter how their brain works -- is worthy of respect and support.

And, we talk about ways to stand up for ourselves and others.

As a result, here are a few actions which Snugglebug has independently taken in the last few weeks:

  • When a speech therapist was telling another child not to "squawk" during instructional time, Snugglebug was able to identify to the therapist that the child was vocally stimming, and that some people listen better when they stim. She stood up for the other child, and reminded the therapist that autistic people should never be forced to stifle or abstain from stimming.

  • When a new teacher, on the first day of school, emphasized to the class the importance of maintaining eye contact when the teacher is speaking, Snugglebug was able to write a thoughtful, respectful letter to the teacher, reminding her that eye contact is difficult or even painful for some people -- including Snugglebug -- and that her teacher's words made her feel unaccepted, misunderstood, and unworthy. The teacher was receptive, and thanked Snugglebug for broadening her understanding of the students in her care.

  • When a different teacher refused to allow Snugglebug an accommodation that is in her IEP, Snugglebug was able to correctly identify that she was, by law, allowed the supportive accommodation. She had to do so in front of her entire class, because the teacher had denied the accommodation, in front of everyone. She was made to go to the office until the vice principal confirmed to the teacher that the accommodation was in her IEP and she should be readmitted to class... but she didn't give up. She respectfully stood her ground, because she knew her rights.
(I've shared these examples with Snugglebug's permission.)

It's important to note they most likely never would have happened if we didn't talk, as a family, about neurodiversity.

She wouldn't have had the words to speak about stimming, and eye contact, if we hadn't discussed, as a family, that some people have different needs than others.

They most likely never would have happened if we had shielded our child from her diagnoses, because we "don't want to stigmatize her," or "don't want her to be defined by her diagnosis," or "don't want to label her."

She understands who she is, how her brain works, and what will best help her to be successful. She's not floundering about, in an educational system designed largely for neurotypical students, without proper supports and access.

They mostly likely never would have happened if we didn't presume competence, and allow her to be included in conversations about which supports are most effective for her. 

She knew that provision was in her IEP because she, herself, had asked for it.

"Mom, why do I have to be the one to stand up for what's right?" she asked me, the other night. "Why don't people just naturally do the right thing?"

There it is, I thought. There are the first signs of weariness. The first hints of recognition of the enormity of the fight. The first bits of realization creeping in, indicating that the fight for justice and equality is never over.

And my heart broke a little bit.

She'll be 13 in a few days.

Thirteen is far too young an age for human beings to become cynical. 

It is far too young an age to feel the weight of injustice crushing down upon those still-developing shoulders.

I have to believe there is hope. And I need my daughter to believe it, too.

"Because you get it, sweetie. You understand things that a lot of other people don't -- like that everyone deserves support, and respect, and dignity. You understand that true inclusion benefits everyone. You understand that injustice is all around, and that even though some people mean well, their actions or beliefs are often hurting others.

And, because you understand these things, you are in a position to change them, with your voice.

You are in a position to set an example for those who don't know they can stand up for themselves. 

When you stood in that classroom and said to that teacher, 'I believe I am allowed to do this, because it is in my IEP. Could you please check?' you showed other students in your class that it's okay to ask for and receive accommodations. You showed them it is okay to make sure that everyone has access to education. 

Maybe there are some students in there who have needed to self-advocate, but didn't know they could, or didn't know how.

And now, they've seen it in action. They know how it works.

And do you think that teacher will ever send another student to the office, instead of providing the accommodation the student has asked for?

You taught the students, AND the teacher.

And you taught the teacher who was insisting on eye contact. You did it in a respectful way, and helped her understand that not everyone has the same capacity or need for eye contact. She probably won't place that same emphasis on eye contact, and alienate some students, again, next year, right?

So things will be a little bit smoother for the next students who come along.

Every time you stand up for yourself, and others, there is change. It might be a little bit hard to see, and it might feel tiny, but this...

This, honey, is how we change the world.

One small, or medium, or great big act at a time.

And I want you to know that you have ZERO obligation to continue to do this work, if you don't want to, or if it gets too hard, or if you need a break, or it takes a heavy toll on you.

I will ALWAYS support you, no matter what."

She was silent for a few moments. I thought I'd overwhelmed her, or scared her, or upset her in some way.

But then...

But then, she said, "I think I'm okay. I like using my voice. I think I'm going to keep doing it. And the more people that learn, the more people there will be to help teach others, right?"

There, in that moment, I saw a glimpse of the adult she's becoming, and of the world she is daring to help create.

In that moment, I felt something that's hard to feel, some days.

I felt HOPE.

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Friday, December 14, 2018

7 Reasons Why We Don’t Do Santa at Our House

Even back then, I knew Santa was creepy AF.

(Image is of the author, as a toddler girl. She sits
on the lap of a man dressed as Santa, with a white
beard and red holiday hat. The toddler has dark
blonde hair with a white barrette in it. She wears
blue pants with a floral-patterned top featuring
a blue bow. The child looks frightened, and
is crying.)
I’ve come across an increasing number of folks who literally can’t believe that Santa never makes an appearance at my house, and that we don’t lead our children to believe that Santa is real.

Sure... they can’t believe that, but expect their kids to believe that a jolly old elf makes a trip around the world in about twelve hours, and sneaks into children’s homes.

Here’s the thing. There are a number of reasons why Santa isn’t a “thing” at my house:


Let me just get that out of the way, first. I don’t lie to my children.

I need my children to trust me. I need them to believe I’ll always tell them the truth, when they come to me with questions.

Maybe telling the truth is paramount in my house because of my children’s history (most of my children come from hard places), but there it is.

They have questions about their history, and that's expected. I want them to know that they can ask me anything -- absolutely anything -- and I will tell them the truth, at an age-appropriate level.

I also want them to know and understand that the truth is the expectation in our home. I want and need them to be honest with me, too.

Lying to children for fun, or to create a sense of “magic,” or out of a need for tradition is still lying.

We create our own magic. We create our own traditions. And that magic, those traditions, come from a place of trust.


It’s inevitable that any secret I would try to keep from my kids is going to come out, at some time.

I’d much rather have them learn the truth from me, than for them to feel like I’ve lied to them, and that they can’t trust me.

Funnily enough, we had the opposite happen, when a teacher told Curlytop that Santa was real, and that her parents were lying to her when we said he’s not.

Let me tell you, stern words were had. A lot of them.

I had to explain to the school that when adults tell children that their parents are liars, it grooms the child for abuse, because it conveys that the child can’t trust their parent.

Yes, I just mentioned abuse in a discussion about Santa. I sure did.

Because when children are told “secrets” by adults they can’t share with their parents — no matter how small, it opens the door for adults with ill intent to isolate children, and ask them to keep bigger “secrets.”


Taking things literally sort of comes with the territory in a house where autism rules supreme, but let me just say that the idea of someone seeing me when I’m sleeping is pretty firetrucking creepy.

A lot of the whole Santa sham is about covert surveillance and someone coming into your home without getting caught.

I mean, really.

As an adult, that scares the hell out of me, and I don't even care about getting presents.


“You’d better not cry; you’d better not pout.”

You can’t lay out the Santa ruse without admitting that a lot of songs and stories have already been written, chronicling how the whole Santa gig works.

And this song? This one tells kids they need to stuff their emotions, because Santa is watching.

If my kids are having big feelings, I’m much more interested in learning what is causing them than having kids stuff their feelings for the sake of the creepy old guy who is spying on them.

I mean, let them worry about Google snooping, and their tablets tracking their location, and Amazon feeding them ads based upon their browsing history. Those are REAL things to be worried about.

Am I right?


I give my children gifts because I love them. It’s not conditional upon them being “nice” instead of “naughty.”

Love isn’t conditional. I don’t only love them when they’re being “good.” I love them because they’re my children.


When kids believe that writing a letter to Santa and being “good” will score them whatever they’ve requested, it sets them up to think they just weren’t “good” enough when it doesn’t materialize.

That year when we were losing our house? That year? No amount of “goodness” would have made an Xbox materialize on Christmas morning, and it had nothing to do with behavior. It was all about finances.


How do we explain — if Santa brings toys to “all the good girls and boys” — that children who don’t get gifts from Santa are still good?

How do we explain that Jimmy, who got gum and an orange from Santa, is just as “good” and worthy as Joey, who got a new iPad from Santa?

So... there it is. Seven of the reasons why we don't do Santa at our house.

What do you do at your house? Are you about Santa, or nah? Why, or why not?

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Tuesday, September 11, 2018

Project 2,996: Remember Christopher Zarba

Image source
This tribute is respectfully reposted from 2014.

Christopher R. Zarba, Jr. was born with music in his blood. The 47-year old from Hopkinton, Massachussetts was the son of a composer/piano teacher, the nephew of a talented vocalist, and grew to be an accomplished pianist and French horn player who played with local symphonies when he was free from his work as a software engineer.

A man who never stopped learning, Christopher spoke fluent German and Italian, painted, gardened, and considered algebra and calculus books "pleasure" reading.

Image source
His wife, Sheila -- also a horn player -- and son, also named Christopher, were a source of joy for Zarba. I watched this compilation of home videos, edited by Sheila, with a smile and tears. The love Christopher shows for his family shines through. You'll see him smiling, playing with his son, and being a bit of a goofball at times. For some reason, I noticed a Band-Aid on his thumb in one of the videos, and it made him even more real to me.

Early the morning of September 11, 2001, Christopher boarded American Airlines Flight 11 for a rare business trip in California. At 8:46am EST, the plane crashed into the North Tower of the World Trade Center.

I'm honored to remember Christopher in life -- that husband, father, son, brother and friend who made silly faces in the mirror, occasionally injured a thumb, created beauty in his life through music, painting and gardening, and never stopped learning about the world around him.

Thank you, Christopher, for the life you lived, and for reminding all of us to truly LIVE.

This tribute is part of Project 2,996, a cooperative online effort to keep alive the memories of the 2,996 victims of the 9/11/01 tragedy. See other participants, and their tributes to those lost, here.

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Project 2,996: Remember Renee Newell

Image source
This tribute is respectfully reposted from 2014.
Have you ever had excellent customer service? The kind that brightens your day, and makes you grateful someone listens, and understands? That was the type of service Renee Newell was known to provide for her clients.

In our busy world, we often have little time to connect with cherished friends. For Renee Newell, 37, of Cranston, Rhode Island, a seminar in Las Vegas was the perfect opportunity to indulge in a girls' "getaway" with her friend, Carol Bouchard, of nearby Warwick, Rhode Island. A customer service agent with American Airlines, Renee booked a flight to Los Angeles, then on to Las Vegas, and secured a companion ticket for Carol. The women planned to stay over an extra day to see the sights of Las Vegas, hit the clubs, and tour the Strip.

At 8:46am EST, their plane -- American Airlines Flight 11 -- crashed into the North Tower of the World Trade Center.

Renee is described by those close to her as having "...a sense of humor; an eagerness to laugh." She was "a great person and a great mom," and "always had a smile at work."

Renee seemed to have a natural gift for brightening the lives of others, and perhaps that is why she followed a career path of service -- including helping out at her family's restaurant, bartending, and her work for American Airlines. She touched people's lives in a way that made a difference, so much so that customers came in from out of state to honor and remember her life at her wake.

A loving daughter to Lillian and Raymond Tetreault, Renee not only helped out at her family restaurant, but also helped when her father moved into a nursing home, and was a tireless and doting mother to her son, Matthew. She was the loving wife of Paul, and sister to Michelle, James, Robert and Steven, and a special family member or friend to so many more.

Image source
It is an honor to remember Renee Newell today. Her story inspires me to work hard to put a smile onto the faces of my clients, to love deeply, to live boldly, and to laugh as often as possible.

This tribute is part of Project 2,996, a cooperative online effort to keep alive the memories of the 2,996 victims of the 9/11/01 tragedy. See other participants, and their tributes to those lost, here.

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Project 2,996: Remember Christian Adams

Photo source
This tribute is respectfully reposted from 2011.

Christian Adams, 37, was a resident of Biebelsheim, Germany and a well-known authority in the wine industry. Christian served as the deputy director of the German Wine Institute and director of its export department. He was father to Lukas, 7 in 2001, and Theresa, 5 in 2001, and husband to Silke.

Colleagues described Christian as quiet and thoughtful; a man who thought no job was beneath him. He'd worked his way up in the wine industry, and he was known for doing whatever job needed to be done, without hesitation - whether it was hefting cases of wine or uncorking bottles. Carol Sullivan, friend and colleague, said, "One of the things that impressed us most was his depth of knowledge."

Indeed, Christian was revered as an authority on wine, and he'd worked hard to gain his knowledge, obtaining a degree in winemaking and grape-growing from a German university and going on to earn a degree in marketing at University of California, Davis. It was at a German Wine Society convention in Los Angeles that Sullivan, director of the German Wine Information Bureau in New York, met Christian in 1989. Wine Institute officials were so impressed with him, they asked him to help with a symposium on Riesling grapes later that year. He met the director of the Institute at that event, who hired Christian to work in the export division. Christian worked his way up to deputy director in 1995.

Dedicated to keeping fit, Christian enjoyed playing and watching volleyball and basketball and - while known for his quiet demeanor - he enjoyed a good laugh or joke with friends.

Photo source

Christian also ran a winery owned by his wife's family, and September was a busy time for winemaking. Still, the calendar of holidays allowed him to break away from his obligations to attend two wine events in the United States in 2001 - one in New York, which ended September 10, and the other in San Francisco, scheduled to begin on the 13th. It was the second event Christian was headed for when he boarded United Flight 93 on September 11, 2001.

Flight 93 was hijacked by terrorists and crashed into a field near Shanksville, Pennsylvania after an attempt by crew and passengers to reclaim control of the plane.

Today, I'm asking you join me in remembering the quiet, motivated young husband and father who was Christian Adams. Please say a prayer for his family and loved ones. Christian, you are not forgotten.

This tribute is part of Project 2,996, a cooperative online effort to keep alive the memories of the 2,996 victims of the 9/11/01 tragedy. See other participants, and their tributes to those lost, here.

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Project 2,996: Remember Christoffer Carstanjen

Image source
This tribute is respectfully reposted from 2014.

Christoffer Carstanjen boarded United Flight 175 intending to take a vacation, headed for San Diego, where he was scheduled to attend a motorcycle rally. He was 33 years old on September 11, 2001, a culinary chef and carpenter who built his own home.

A dancer from a young age, Christoffer was a member of the Country Dance and Song Society and the Marlboro Morris Men dancers, where team members nicknamed him "Mr. Wonderful." As one fellow dancer put it, "I looked forward to dancing with Chris because I knew he'd keep me laughing the whole time, and he'd swing so fast I felt like I would fly away."

Christoffer appears to have truly lived life, throwing himself into his passions, and making far-reaching goals for the future, including building a boat and learning to sail it, and establishing a live-in college for senior citizens.

A resident of Turner Falls, Massachusetts, and a computer research specialist for the University of Massachusetts Amherst, Christoffer was part of an internet motorcycle forum, where he earned the nickname "Captain Tupperware," a reference to the brightly-colored Honda motorbike he loved.

When researching Christoffer's life, I found this quote, taken from his website, which I think truly defines his outlook on life:

Best of all.....
Keep healthy, wealthy and wise. Your job is important, but don't live for just your job! Keep active and an open mind. Practice random acts of kindness. Compliment someone each day. Listen to all sides of a story before making a decision. Don't be afraid to admitting on being wrong. Learn the meaning of Life. Try, please try, to live within your means. Don't worry about saving money for your kids' college costs, it means lots more if they pay their own way. Save at least 15% of what you make for retirement. Try to meet someone new everyday. Ann Landers really means well. Plan for the future. Listen and surround yourself with positive people and speakers. Don't let the turkeys get you down. Write when you get work. :-)

Take care,

We should all be so lucky to know who we are, and what we want out of life. Ride on, Christoffer. You are remembered, today and always.

This tribute is part of Project 2,996, a cooperative online effort to keep alive the memories of the 2,996 victims of the 9/11/01 tragedy. See other participants, and their tributes to those lost, here.

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