An Open Letter to My Students as Hurricane Irma Looms

Dear students,

I am worried about you. Whether you know what’s going on or not, your parents and caretakers are probably just a bit on edge. They don’t mean to be, but after waiting in 500 million lines only to be told there’s no water, they are going to be a bit cranky. That was hyperbole, you’ll remember from our quiz two weeks ago.

With all the preparations underway, I begin to question what it is I’m actually teaching. Are you going to feel more secure in this storm knowing that you can now tell a proper noun from a plural noun and that a pronoun is not a noun with a job? No, not at all. Are you going to maybe write in your journals or send emails? That one you might do. Please remember your salutations, closing statements, and body paragraph structure when you do.

I know you’re probably maxing out your data plans on your cell phones. Did you get battery packs for when the power goes out and you can no longer charge your phones with an outlet? I know you’re more worried about whether Tommy or Suzy like-likes you, and I can assure you that you will still have these concerns when the storm blows over.

I hope that you’ve been enjoying your time off from school. I have decided that the single most defining moment in whether or not you’re an adult is how you view forced vacation time like hurricane days. I wish that we could go back to school whenever it is that we return, secure in having just played for a quantity of days on end without any sort of consequence. My wish is in direct contrast to what I am seeing on my weather tracker, though. File this in your memory banks that adulthood is when you realize that forced days off aren’t free. Yes, you have to know this, and yes, this will be on the quiz.

Back to the worry. Please remember that when tomorrow comes, and it’s going to, the term “be safe” will take on a whole new meaning. It is no banal platitude (you’ll remember that from the vocabulary quiz). It is a desperate plea for your well-being. Student A, your mom is not trying to get on your last nerve when she asks you to help her; she needs your help. Students B, you will be fine. In fact, your ability to be fine no matter what everyone else around you is doing is one of your greatest strengths. Student C, if you could come over and hang out with us, I would have you here in a heartbeat.

When I see you next, you will wonder if I have slept. I probably haven’t. But the joy I feel at seeing you – right before you start asking me what we’re doing in class – will take away the puffy bags under my eyes more quickly than some cosmetic could.

Be safe. Listen to your families. Come back to school so that I can see you and complain that you’re too loud. Only this time, I probably won’t. Your noise will be the best tonic in the world.

Until then,

AlwaysLiz

 

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Skin Deep

Beauty is skin deep, in the eye of the beholder, and/or a matter of perception depending on whom you ask and whether they’re talking about themselves or someone else. One of my favorite quotes that I wish I could give proper credit to is that everyone is beautiful given the proper light and perspective. Maybe it was a photographer who said that, maybe a poet, or maybe I wish I could have made it up.

One of my favorite people had a baby a bunch of months ago and was disheartened recently when her clothes didn’t fit the same way post-baby as they had pre-baby. Even though she could remind herself that her innards had shifted when she birthed a person, there was still a part of her that felt betrayed. The clothes hanging in her closet are as yet still unwearable, not because they don’t fit but because they don’t fit her the way she remembers. She literally has a closet full of clothes and nothing to wear. The clothes lurk there, silently passing judgement on her postpartum physique. It doesn’t matter that I could remind her that she is a remarkably beautiful woman, with honeyed skin and big blue eyes that show a deep level of caring for others. Nope, it’s inanimate objects she’s paying attention to.

This weekend she’s going to be the boss of her closet and take down the clothes that aren’t comfortable at present so that she can assess what she has to work with. I hope that she’ll feel a burden lifted by putting subliminal reminders of the past away rather than lament what doesn’t agree with the beautiful woman she is at the moment.

We’re ever-changing multifaceted critters, we people, and our beauty is best expressed in our current evolution, not some vestigial remnant of clothes and days gone by. I don’t advocate to anyone that they run out and buy an entire closet every season – that’s pretty silly. I do, however, know how much better people feel when they feel comfortable in what they’re wearing. It’s just another version of being comfortable in one’s own skin, which is quite a bit more than skin deep.

We Interrupt Your Regularly Scheduled Inspiration

It’s Sunday night, and because I’m supposed to be doing my homework, I’m scrolling through my social media. By now, you know my ability to task avoid could win me a gold medal if it was an Olympic Sport; on this particular Sunday I am outperforming my usual excellence in not doing what I tell myself I’m supposed to. I begin watching a sweet video about people giving advice to their younger selves; I had just begun the inspired rapid eye blinking that signifies a heartfelt “Awwwwww” is about to escape, when my husband interrupts me with the dulcet tones of, “Whatareyoudoingwhat’sfordinner?” He says this as if it’s one word, so read it that way.

We pursue our inspiration differently, my husband and I. His is more along the lines of finishing a project and finding satisfaction in a job well done. Mine comes from looking around, taking stock, celebrating the moment, and sharing that with others, usually the family. Sometimes that blends, sometimes it doesn’t. Sunday night, for example, he has taken a break from his newest project related to restoring an antique Ford pickup truck (forest green, 1963 F150 for those of you who speak Car and Truck). He’s inspired, gratified, motivated, and quiet obviously, hungry.

If I were a subservient wife, I would stop watching my video clip and hunt/gather/prepare dinner. I am not such a person. Make of this what you will. I finished watching the clip, and then called husband and son to help me with dinner. What we lack in culinary prowess, we more than make up for in ability to transform a humble meal into a social occasion. We eat in the dining room this Sunday evening, largely because my homework occupies my kitchen table. We don’t’ light the candles, but we sit and visit, laugh and tease, have a serious discussion about adulthood, and a lighter one about my unfinished sewing projects.

We clean up the table together and retreat to our own caves: Husband into the garage, though he welcomes us all to join and grab a wrench; Son to his room to listen to his newest music find (Salsa? Calypso? I can’t quite tell which); me to my homework to wrestle with the twin desires of completing work ahead of time and the equally provocative notion of finishing the book I’ve been reading.

I finish the homework, smug and self-satisfied for completing it early, and then grin when I realize what I would have contributed to the video of what I’d tell my younger self.

“Hey! Son!” I holler over the salsa/calypso/happy music playing in his room.

“What?”

“I love you, and I think you’re really great!”

He doesn’t respond because that’s not his way, but his happy chuckle is better music than the tune on the radio.

“Hey! Husband! I love you!” I call over his swearing at the truck’s reluctance to part with some mechanism or other.

His grimy, smiling face pops out from under the truck. “Love you too. Will you pass me that wrench?”

Task accomplished, I am now ready for my turn on the video. My advice to my younger self: don’t miss a chance to tell people you love them.

A Noble Quest

The idea of a quest is appealing: overcoming obstacles, fighting foes (real or imagined), emerging victorious. It’s a noble prospect, this idea of seeking that which is difficult or fraught with danger. I am, however, more Don Quixote-like than King Arthur-esque, so any form of actual questing is somewhat foreign to me. Until recently.

To fulfill a promise to my daughter, I went on a quest to obtain a prerelease order for a small action-figure doohickey. I understand that these figurines fetch an attractive sum on eBay, and I had heard that the method of releasing them was creating a buyers’ frenzy of sorts. Not to worry, I assured her, mom is on the job.

I learned from previous stories of prereleases gone sour that one should arrive well before the store opening. I thought it would be sufficient – more than sufficient, actually – if I got to the store three hours before it opened. Based on the information we had from other prereleases, this was probably optimistic, but like all good Don Quixotes, I was ever hopeful.

On questing day, I packed the car with a folding chair, charged my e-reader and phone, filled a thermos with coffee, and rode (okay, drove) out in search of windmills to fight – I mean, action figures to preorder. I expected to be alone by my big girl self when I arrived. I was wrong. A trio of early-bird enthusiasts was comfortably ensconced in their chairs, typing away on their tablets. I greeted them with a perky, “Hello!” That might not have been correct questing etiquette, but they all offered, grumbled, or otherwise muttered their return greetings. By 7:00, there were 10 of us in line. By 8:00, the line had doubled. By 9:00, the line had doubled again, and our souls had been saved by a cheerful Jehovah’s Witness who was as interested in our quest as in the potential of our eternal spirits.

At 9:30, the penultimate moment, a disgruntled member of the toy emporium came out with the preorder slips – a noticeably thin stack. She passed out her entire stack of 10, only 10, slips. I was shocked. Less than a third of the line received this most precious paper slip. I began to fret; visions of Black Friday stampedes ran through my head as I held my preorder slip tighter in my grip. Memories of fistfights in parking lots during the holiday season flashed in my mind, the time of year and the behavior of otherwise well-mannered adults standing in stark contrast to each other. Still, I held on to that preorder slip.

I watched many of my line companions trudge away. A confused grandma’s shoulders sagged as she hoisted her bag, muttering that she didn’t understand what all the fuss was about anyway. The gentlemen ahead of me in line boasted to each other about how they had the whole collection and were planning on making a mint on eBay. I decided I didn’t like them much. The girl behind me had been waiting all this time for her brother. I decided she was my questing partner.

When the doors to the store opened, I got in line to pay for my preorder. When it was my turn, the computer crashed. Quests, in case you haven’t heard, are not for the weak of heart. I wasn’t out on some fantastic imaginary battlefield swiping at windmills; I was in line getting ready to swipe my charge card. Access denied? Oh. My. After at least an eternity (or five minutes, take your pick), the red-faced clerk resuscitated the machine. I paid for the preorder, and walked quickly out of the store before some cranky computer entity could change its mind and undo my order.

I was ebullient, truly joyful. Not only had I managed to do a kindness for my daughter, I had achieved a specific goal. Passing time with a group of strangers who had a likeminded goal was, I admit, kind of fun. I was not part of the “in-group” who actually understood the value of the object, but I was part of the spirit of the moment. I could have failed in my quest, I could have become like the bucketheads in front of me and been all arrogant, but mostly I was just grateful. I texted my daughter with an update, and she responded WITH JOY AND EFFUSIVE CAPITALIZATION. I then went to work and returned Don Quixote to the land of imagination and fable.

The Awesome Power of Caregivers

Don’t worry my friends who enjoy the more frivolous commentary of my blog – I’ll return to my regularly scheduled whimsy soon. At the moment, I have picked up my puzzle-shaped coat-of-arms and joined my brothers and sisters on our quest to spread autism awareness throughout the land. We’re the Knights of the Spectrum Roundtable, and I can assure you, that table is a perfect 360 degrees; no lopsided ovoids for us.

I’ll be hopping analogies, metaphors, and all types of figurative language today, so I hope you’ve eaten your breakfast. To continue: Parenting, I have been told, is tricky. Parenting a kiddo with autism is tricky, with a capital T, fire shooting out of its mouth, spoken in a foreign language, looking at the world below from the precipice of a cliff with angry mobs prodding our backs, while other people tell us to have faith and climb on down, but we’re afraid of heights.

Fear or not, we have to make our way down that cliff. There are probably those of you who want me to provide a lovely image of making my way up a hill and standing on top of the mountain all victorious, a Rocky of Autism Mommahood. That image doesn’t work for me. I don’t mind an uphill battle; I don’t mind hard work, sweat and tears. I mind failing, I mind falling, I mind crashing, so my mental model is all about the fall.

I am not at war with autism. I refuse to capitalize it unless it’s part of a title, but that’s just my way of showing a word who’s boss. I am not tired of fighting my way through the educational system I’m proud to be a part of. A huge part of my experience as a warrior on behalf of people with special needs has been in reframing other people’s ideas and assumptions anyway.

We, the warriors, learn how to rappel down the developmental cliffs with the people we care for, providing a safe landing on firmer ground. We learn how to tell a buckethead practitioner from 20 paces away, and we can stop a patronizing discussion before it begins. We also know how to ignore the helpful commentary of strangers while our loved ones are melting down. We develop thick skins; most importantly, at some point we learn how to recognize that we didn’t tame the dragon, we harnessed our own.

Our best weapon is a combination of knowledge, endurance, and practice. Humor helps, of course, hence the faulty allusions to either Camelot or the Game of Thrones, depending on how old you are. The battles are emotionally bloody; we fight to secure a future in which our children and loved ones can be productive, happy. We have every reason to think that they should be, and I know it’s worth a cliff dive or two (metaphorically, please) to ensure that all people have access to their futures. Did I tell you anything new about autism? Nope. I hope, however, that we all understand that warrior-parents and caregivers, their teachers, therapists and service providers, are a formidable army of awesome and we need to continue wielding our power so that all people have access to early intervention, quality care, and the necessary supports to be successful.

 

Autism Awareness – a month of ruminations

April is Autism Awareness Month, a month of information and fellowship I have often viewed with a combination of dread and a fist-bump. Yep, the fist-bump of dread, that sounds about right. I am a gentle warrior advocating on behalf of those who have autism spectrum disorders, but it is important to note that the ‘gentle’ part of my warrior-ness in no way implies I’m not capable of breaking out a can of rhetorical whoop-ass if I need to.

I am told that “everyone” already understands what autism is and that I should concentrate my energy elsewhere. “Everyone” apparently lives in other communities because my own is still riddled with people who don’t speak the language of autism awareness. I am going to break down autism as I have come to understand it, with love and a sense of humor during this month. I have one goal: that “everyone”, whether you’re tired of people talking about autism, your life has been touched with autism, or you are on the spectrum yourself, will walk away thinking.

We begin: my own adventures in autism awareness are humble. I did not study autism and receive a Ph.D. in diagnosis and intervention. I am the proud mom of a person with autism, so I have 21 years of field experience. I am also a teacher with 11 years of experience working in exceptional student education. I have been hanging around with autism for a longish time. I do not, however, have autism myself, so anything I can communicate to you is not based on the essential, experiential component of living in the head of someone on the spectrum. We are social scientists, all of us, prone to classify and subdivide people based on certain characteristics, but no matter how much we read or how successful our interventions are (and many are pretty great), we don’t have a base-level understanding of living on the spectrum. That only comes from the individuals who live with autism themselves.

Thank goodness for Temple Grandin, Daniel Tammet, Nedi Safa and Matt, John Eder Robison and others who have shared their perspectives on growing up with autism. They are my heroes. Please read anything written by them for a factual, experiential understanding about autism spectrum disorders. Please also inform yourself . Go to www.cdc.gov, or www.nimh.gov, for a sense of autism’s pervasiveness, its cost (both economic and emotional), its pathology and etiology: these are the numbers and non sequitors to share when you’re discussing autism in a more philosophical, less living-it-and-doing-the-day kind of approach.

I am more of a do-the-day kind of person. In my research, case studies, and intervention work, I read a lot. A whole heckofalot. I love fiction as much as non, and one of my favorite books with a main character who has autism is Elizabeth Moon’s Speed of Dark. She explores a world in which an experimental treatment for autism exists. The main character, Lou, has autism and has been offered this experimental treatment. He has to then decide what that means for him. The book delves into a question so many of us can ignore in our daily lives: if you could take away your disability, would you?

That’s a tricky question, one that can crash into a horrifying discussion of eugenics. I keep my blogs short on purpose, so I can only recommend you read the book. To offer my answer to that question, many of us who love and/or teach people with autism work ceaselessly for greater understanding, better interventions, effective supports for people on the spectrum. That does not imply that we’re looking to get rid of a set of characteristics. As Temple Grandin and others point out, autism also has its strengths. We spend a huge amount of energy addressing the deficits and more compelling differences of autism while also devoting the needed time building skills, challenging and motivating individuals achieve their potential. That is no less important than challenging, building skills and motivating, our typically developing brothers and sisters – we just sometimes forget to put on both interventional pant legs and end up falling on our keisters.

Autism Awareness Month, then, is a great month to spend some time thinking about that which makes us human. Autism is a neurodevelopmental difference, and neurodiversity is the stuff of life. I can’t imagine a world in which we’re all the same, and I wouldn’t presume to be the one to judge the quality of someone else’s life based on a set of criteria. We all have the right to live our lives with dignity and a giggle or two, and the obligation to respect others’ right to the same. This is me, “lighting it up blue” during the month of April, with fist bumps to all.

 

It’s Spring and There’s Adventure in the Air

Spring Break. Beaches, parties that would make Bacchus jealous, youngsters celebrating the equinox of the transition between adolescence and adulthood. I’m not sure why spring break is advertised as a singularity of the young, nubile, college-aged person. When I look at my passersby on the highway, I see as many retirees tooling around in their motor coaches as I do cars full of beach-and-hotel gear. And why not? Road trips are adventures with nothing but miles of open roads and pitstops at highway drive-throughs to sustain and fortify the spirit.

If one reads the “Bucket Lists” of the YouTube genre, taking a roadtrip with friends is one of the “Must Do” items before shackling oneself down to a life of sensible shoes and Dockers. I see that, but I raise it with the family road trip. There’s nothing quite like 500 miles to the next pitstop to bring out the reality of family dynamics. We have the impatient souls, the dreamers, the drivers (both actual and backseat), the occupiers – and some combination of those qualities, all cramped up within the confines of four wheels and no bathroom.

I have two favorite road trips, both of which have happened while I’ve been a mom. The first one was when we rented a car and drove around the Arizona-Utah-Nevada triangle. We discovered that the signs posted on the side of the road recommending “only vehicles with four-wheel drive” actually meant only vehicles with four-wheel drive. After about 500 yards on the rocky, potentially breaking-the-undercarriage pathway of a road that had never been completed, we arrived back on the main stretch of highway, which was really only slightly more effectively paved. Gotta love the threat of imminent rockslide to bring out the adrenaline. Lesson learned from that experience: the kids are both comfortable with their father’s driving and don’t mind mountains. I am perpetually impressed with my husband’s driving, but I really, really mind mountainous road. I mind mountainous driving very, very much.

The second road trip of great familial significance was a multi-state trek to look at colleges and train routes. This is an unusual combination, perhaps, but it worked for us. The interesting thing that occurred was that, for people who aren’t used to resting for any stretch of time, much less for miles on end, we were happy to read, relax, sleep, and argue about whether it was worth it to drive 45 minutes out of the way for a Taco Bell (it was). We learned that veering off the predesignated path is sometimes more fun, even if it takes mom another 45 minutes to make it back to the highway.

Road trips have provided me with a zen-like appreciation of the Moment. It is difficult to recreate that presence and celebration of the now in our daily lives. Too much gets in the way. The gift of a road trip is that, yes, someone will throw up in the car, a gasket will blow off of something, you’ll have to spend the night in a place that’s … kinda weird, and you’ll have to rely on maps when the GPS goes offline. In other words, you’ll learn to rely on yourself.

For those of you who are young and glowing with youthful exuberance, get that road trip on. For those of us who have actually traveled a road or two, get that road trip on. It doesn’t matter whether it’s spring, or a vacation, or a long weekend. Go where the water bottles and the roadside attractions will take you. I suggest they’ll probably take you back to yourself. That’s a pretty great destination.

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