As you might have noticed, I kind of don't like keeping up with the crowd.
The laptop on which I'm typing this is the only laptop I've ever owned. I bought it in 2010. For the previous 22 years, I'd used exclusively desktops.
As Emily is fond of reminding me, I got my first cell phone in 2005. Until then, phones for me were all landlines.
Heck, I was still adjusting to Microsoft Word, which I only adopted in 2004. Until then, I'd been using WordPerfect since high school—that is, for quite a number of years.
Getting back to cell phones, once I got one I stuck with the basic kind—now known as “feature phones” or “flip phones”—until last year when we finally got smartphones.
We Aspies tend not to like change. Much more commonly than average, we like to stay in our comfort zones.
But now, I'm toting around a Droid Pro, snapping pictures, making video clips and emailing and uploading them like there's no tomorrow. For example, just a few days ago I snapped a pic of a car in front of us with very interesting bumper stickers. And emailed it to myself on the spot ... maybe a bit redundant, as I also have automatic Camera Upload with Dropbox so pretty much the moment I clicked the “shutter” that photo was out in my own protected corner of cyberspace. (Emily, who was driving us, didn't want a copy.)
“Is there an app for that?” I've got two smartphone office suite applications, one paid and one free; the jury's still out on which is better. I've got an app for finding the nearest Five Guys. Just a few hours before writing this, I got an app for converting pictures I take with my Pro into PDFs—great for things like receipts, signed contracts and other things you want to preserve on the fly.
I've got Google Maps, which is great for getting directions if you get lost. I've got an app that tells me in real time how busy the processor is and how much (or little) RAM the phone has available, and how much data it's receiving or sending.
And oh yes, I have one to (try to) control my battery hemophilia!
So now I'm looking ahead to the holidays, close enough to the end of our two-year contract so we can upgrade our smartphones at a subsidized cost. I'm almost drooling over the Droid Razr Maxx myself, though I might get the Razr HD instead.
All this staying current isn't easy—especially for someone who struggles with change—but these days it's a must. Especially if I'm having a kid soon who's going to live and breathe mobile tech in a few years—not to mention the kid's friends' parents, most of whom will likely be significantly younger than I am. To paraphrase the old song, keeping up is hard to do. But if it's something you're interested in enough, it can be fun!
Two days before our 19-year-old son Mickey leaves for sleep away camp, he asks to get a haircut.
No big deal, right? But 15 years ago this would have been unthinkable.
Back then, the barbershop was the scene of some of our worst parenting moments. By 8:00 in the morning of the Dreaded Haircut Day, my husband Marc would already be muttering, “I need a scotch before I can do this”—and he doesn’t even drink scotch. Bracing himself in the barber chair, Marc would clench Mickey in a bear hug and scissor-lock him with his legs. Mickey would flail frantically, headbutting his father and screaming like someone undergoing surgery without anesthesia. Customers gawked. One old man snarled, “Rotten spoiled brat.” Marc sweated through his shirt. When the barber declared he was done, I’d take Mickey into my arms. Sobbing and spent, he’d collapse against my shoulder; smearing us both with snot and hair. We tipped big. Very big.
Unable to face a repeat performance, we’d let long months go between haircuts. Mickey’s great-uncle Jack liked to tease him. “You look like a girl, buddy!” he’d say. Some days when we’d walk by that barbershop on our way to the deli, I could swear that as soon as the barbers saw us passing, they’d quickly pull down the white shade in the window that said “Closed for Lunch.”
But today when we enter the barbershop Mickey sings out a cheery “Hi Dom!” as he plops into the chair. Dom drapes him in a maroon cape, and picks up a shaver. A screen splits in my head: I can still picture that terrified little boy, even as I watch my son, nearly a man, sitting solemnly watching his reflection in the mirror.
I wait quietly, soaking in the sounds of barbershop banter, the sports talk, the sharing of summer plans. It is all so completely ordinary. A radio is tuned to a Lite FM station; the song playing is Journey’s “Don’t Stop Believin'.” I reflect how anyone who’d seen my son all those years ago would never have believed that Mickey would one day request—insist—we take him for a haircut. Yet here we are.
“How’s this?” Dom asks. I stand beside Mickey and glance down; the cape is feathered in a field of light brown hairs, as covered as a forest floor.
“Let’s take it down a bit more,” I suggest. “Is that ok with you, Mick?”
“Yeah, Mom,” he says.
I remember how we used to sneak into his bedroom at night with a pair of shears to give him a trim as he slept. I think of the time he was 5 and we took him to a local performance by the Paperbag Players; we hadn’t known that they were going to perform a new skit called the "The Horrible, Horrendous, Hideous Haircut." “NO!” Mickey shrieked, and every head in the audience swiveled our way.
Nowadays, Autism Speaks Family Services division offers a haircutting training guide for families and stylists on how to make the experience more positive, but back then there was nothing. Fortunately, one of our behavioral therapists offered to tackle the challenge. Mickey was 7 years old. She took him to the next town over—too many negative associations with our local barber—where they simply practiced strolling by a barber shop. The following week, they stood in the doorway. Eventually they progressed to sitting in the waiting area, watching other people get haircuts; then having Mickey sit in the barber chair. Eventually they introduced the cape; the shaver; the scissors. It took months, but by the time Kathy was done, Mickey was able to—miracle of miracles!—tolerate a haircut.
“This feels better,” Mickey tells me. His hair is crew cut short; I can see scalp. I think he’s more handsome with a little more hair. But Mickey is happy with how he looks, and that’s all that matters.
“Thanks Dom,’ Mickey says softly. Dom dusts a brush with talcum powder, sweeps it across the back of Mickey‘s neck. Mickey stands, turns to me and asks, “Can I have a dollar?”
I give him a $20 bill. He hands it to Dom. “Keep the change,” he says breezily. A man of the world.
“Is Dom proud of me?” Mickey asks.
“Very proud,” I say. “You know what? We’re all very proud of you.”
This whole visit to the barbershop has lasted 15 minutes. But it took us years to get here.
What makes a vacation a vacation? For me it's all about doing nothing. It's about soaking up as much sun as SPF 30 and my umbrella will allow. It's about being on the beach and spending the entire day absorbed in a good book. And most importantly, it's about being with family without the day-to-day stresses of work and school and appointments and getting to various places on time. I love it when my only logistical requirement for the day is arriving on time for my dinner reservation. I have very vivid memories of going on vacation as a child, and being just as excited the night before we departed as I was on Christmas Eve. I LOVE vacation in that way today, and never look forward to returning to the routine of being at home.
I can't imagine anyone not feeling the same way as I do about vacation. Much less, that my own offspring don't feel the same way. I find it ironic that my children are saying the same things to me that my parents used to say to me: "Turn down that music," or "It's time to go back inside, we've been out here long enough." And my response to my children is the same as it was to my parents: the sigh and the rolling of the eyes as I turn down the radio, or "Just five more minutes" in response to the pleas to go inside.
Despite the fact that the love of the beach has apparently skipped a generation in my household, I really want my children to enjoy and appreciate their time away from the routine of home. I take heart in the fact that Cameron genuinely looks forward to being with his extended family. He's always asking about who will be at the beach when we are there. He checks to make sure that my sister and her family will be there, and asks how many days they will be with us. By far, the most important aspect of any trip to the beach for Cameron is spending time with his “PePop.” My father has the good fortune of living at the beach year round, and Cameron loves to spend time with him. With PePop, Cameron can escape the demands of being Cameron. There's no requirement to reciprocate conversation. There’s no monitoring of his diet. No little sister around, whose sole intent seems to be to annoy him. So, I guess for Cameron, being at PePop's house is like being on the beach for me. No worries, no hurries, just a sense of calm and freedom.
As we see this year's summer vacation draw to a close, I feel we are all very satisfied in that it was a vacation well spent. We've all survived the nine-hour car ride that really takes 11 hours in traffic, and are actually excited to be home again. I have spent enough time beachside, and Cameron has spent enough time with his grandfather, and everyone's batteries are fully recharged. It seems even though we have very different ideas on how to spend a perfect vacation, we've both spent a perfectly wonderful time together and gotten exactly what we needed from the break.
“You are growing up so fast Kerry!”
The first time anyone ever told me that was when I was in third grade. It was one of the aides in my class. Between now and then I’ve probably heard this ad nauseum. You see, I always was afraid of growing up. Being an adult now is such a scary thought but probably what’s scarier than that is losing my identity.
You see autism has become a part of my identity. I am no longer the “kid with autism” but “autistic” instead. (From time to time, though, I tend to flip-flop between the wording in my writing without even realizing.) This is an interesting topic that has been spreading through the autism community. The more I seem to engage people about my self-advocacy the more I hear strangers say things such as “I would have never know you had autism!” or “Kerry, it’s so great how far you came from where you were before.” The whole topic of “Outgrowing Autism” and “Coming of Age with Autism” is something many adults will face within the next decade.
A big concern is that if more people believe that autism can be “outgrown,” then autistic adults could lose self-advocacy opportunities. Most of my autistic tendencies are things that a random person off the street wouldn’t see. I’ve had people come up to me in the past who have asked if I was misdiagnosed or asked how I could help consult when I didn’t show any “obvious characteristics.”
These types of individuals haven’t seen my struggles growing up, though. Being nonverbal till I was 2 ½, being unable to pronounce different letters, having dysgraphia, fine and gross motor skill difficulties, sensory integration dysfunction—you name it that was me. There are many individuals on the other end that see me now and say that I give them “hope” though and ask me questions based on my experiences from there to now. This is where we need to steer our future because the fact is that the popular image in the autism community right now is with kids in their early childhood. It’s that simple and this is part of the reason.
Don’t get me wrong though, early intervention is key. But we also can’t forget what happens when our kids grow up. We can’t assume some will outgrow autism because, as I mentioned above, autism is a part of who you are. We must be prepared to help each and every adult if need be to avoid the possibility of someone slipping through the cracks.
The main focus of what we hear about in the autism community today is on early intervention and services for children and families. With the staggering rise in the rates for children with autism I challenge us to look ahead 20 years and start to develop services and supports for them. An equally important group are the adults with autism who need services now. That is why my perspective as a young adult with autism is critical to the discussion. I can be the voice of the young adult with autism and by speaking out help define the issue. There can be no solution until we acknowledge there is a problem right now for autistic adults in areas of employment, insurance, housing, and supports.
So I may be an adult now but please understand that my name is Kerry and my identity continues to be molded and shaped by the steps I take as an individual.
Every year in early July, my thoughts turn to a friend lost too soon. My childhood friend Holly passed away in July 2006. Whenever I hear about how important it is for special needs siblings to forge connections with other siblings, her face comes to my memory. Yet I don't imagine her face as it was in the last months of her life: covered by makeup, frequently elusive. I remember that face as it was when we first met: freckled and painfully shy, yet often alight with interest.
Despite our shared experience of being older sisters to special needs younger brothers and our natural affinity for each other's company, Holly and I grew apart. After years of close friendship, we chose different paths. Perhaps, however, it's more accurate to stay that we selected different disguises. As we made the transition from middle school to high school, I chose to play the role of “the quiet girl,” the one who overachieved scholastically to overcompensate for feelings of insecurity. I strove to be the best while, simultaneously, trying to stay invisible. Case in point: As a young teenager, I kept a calendar outlining the outfits I wore to school each day (because heaven forbid that I should repeat a clothing ensemble more than once every three to four weeks). It seems silly now, but the fact is that I was terrified of being noticed. Being noticed was risky. Being noticed meant stepping out from behind the wall of invisibility I'd cultivated so carefully. The closest I came to rebellion was the night that I tiptoed into my closet at 4:00 a.m. … to finish up some homework that I'd claimed to have completed the night before. (And yes, I felt terrible—and was punished appropriately for telling a lie.) Sneaking around for the purpose of doing homework, that was me as a teenager.
Holly did the opposite; she showcased her subversive, contrarian side. Though she had a brilliant and creative mind, she was unmotivated by school work, and generally unconcerned with scholastic achievement. She was more interested in taking risks and getting noticed. Though I'd see occasional flashes of the shy, reticent pre-teen I'd originally befriended, Holly's usual teenage demeanor evolved into one of audacity and wildness. While I dressed to fit in with my peers, Holly dressed to stand out from the crowd. She wore gigantic heels, eclectic, Goth-style clothes, and bold makeup on a daily basis. To this day, whenever I see Lady Gaga in one of her famously wild getups, I think to myself, “I bet Holly would have worn that. In fact, I bet she did.” In high school, we maintained a friendly connection and talked sporadically, but the differences in our public personas both indicated and increased our sense of separation from one another. When we'd exchange Christmas cards and gifts, I'd feel the loss of our former friendship; it was a faint foreboding of a much greater loss to come. Holly chose to take dangerous risks, and ultimately, the cost of that choice was her life.
From the perspective of years, I can see the ways in which our distinct disguises were shaped by our experience of being sisters to young men with special needs. I elected invisibility and perfectionism in part because, as Willie's sister, I was excellent at apologizing and deflecting attention away from “strange” behavior. Holly elected edginess in part, I believe, as a response to her brother's needs. More than once, I heard her use her bold defiance to defend him against bully's taunts.
When Willie began struggling with self-injurious behavior and aggression, I'd bury myself in homework and sports, squelching my anxiety in activity. Perhaps I failed Holly with my striving; perhaps she let me down by disappearing into drugs when I needed her most. But the last time I saw her, I felt nothing of failure, only a sense of compassionate connection. Despite our differences, we seemed to stand in solidarity with one another. And that feeling remains with me now—a specific grace that I hold to whenever grief draws near.
During the July 4th holiday, I visited the county fair with my mom, a few of my aunts and uncles, and my cousin. I did not go on any rides (I am too big for most of them now), but I did visit many of the barns and stables which house local farm animals—one of the fair’s most unique attractions. As I walked through the fair, a flood of memories of prior visits came rushing back to me. I had not been back to the fair in a long time; I never realized how much I missed it.
When I was much younger, I used to go to the county fair with my family every single year. It offered me a chance to see a lot of things I did not normally get to see. The fair was mainly divided into two parts. One section consisted of traditional carnival rides and games while the other section featured various farm animals and exhibits of products made in the county. Each part was expansive and seemed to get bigger every year I went. There always seemed to be something new that would grab my attention. Because I had a limited frame of reference as to what the rest of the world was like at the time, I felt like I was stepping into a completely different world. This feeling has not disappeared.
My favorite part of the fair this year was an exhibit of John Deere tractors from the past 70 years. Many of my family members with whom I went to the fair grew up on a farm where they regularly used a tractor. I found it interesting to note that the model of the main tractor line did not change much from year to year, but that models from a larger span of years apart looked very different from one another. Despite their vastly altered appearances, they could all still be recognized as John Deere tractors. The relative sameness of a symbol like this over such a long time greatly appealed to my desire for consistency in all areas of my life. It was also the only portion of my visit to the fair which seemed to follow a definite structure, as the rest of the trip was much more freeform.
The farm animals were also quite interesting. I saw cows, pigs, chickens, roosters, sheep, horses, rabbits, and many other creatures which I do not normally get to see in my area (apart from the horses and cows which are fairly common). The animals have always been a prominent part of the fair for my family. My mother’s family that lived on the farm took care of many of the same types of animals that were at the fair. From the way my aunts and uncles were nearly gushing with awe toward every single animal, I assume they became very nostalgic as they went through each barn. I remembered when I used to pet most of the fair’s animals. It was often an unusual experience for me because I was slightly afraid the animals might bite me or get saliva all over my hand—a thought that I was not at all comfortable with. I did not pet the animals this time either because I did not want to get fur all over my clothes, and because I still retained my primordial fears of the creatures’ unknown behaviors after all these years, but I enjoyed seeing the animals again nonetheless.
I could see a lot of rides that I used to frequent as I walked by. There was a grouping of carousels in which younger children could ride on horses, in airplanes, and in cars. I had been on all of these carousels before and they were among my favorite rides because they did not involve a lot of jerking motions. In another corner of the fair was a roller coaster shaped like an alligator. It was mostly designed for younger people because it featured only two fairly small hills. It was never a particular favorite of mine because I liked to be closer to the ground. I met a friend of mine at the fair who enjoyed sliding down the giant slide; I used to like this one, but I always feared that I would somehow end up veering off the slide altogether and onto the ground.
I left the fair with my mother after a few hours had passed. I did not stay for the fireworks display the fair had that night as they make too much noise for me to tolerate. In years past, my parents did take me many times to see fireworks, and I did enjoy seeing the multicolored swirls and flowers that appeared in the sky. However, I would stay in the car with the windows up so that it would be less noisy for me.
Nonetheless, from my home at dusk, I could hear fireworks going off all throughout our neighborhood and even from further away. Each sudden explosion took my mind off of what I was doing and caused me to look out the nearest window to see where the noise was coming from. Even though they are loud, I think next year I will try to go to see a fireworks display and see if I can tolerate the noise. The enjoyment of seeing the display in the sky may be worth putting up with the noise they make.
Going to the fair was a very fun experience for me. It gave me an opportunity to learn more about my home county, take in some unique sights, and generally have a lot of fun with my family. I wonder what new sights will be waiting for me at next year’s fair. Maybe the fireworks!!
For many of us on the autism spectrum, obsessive/compulsive characteristic permeate our daily existence. As children, these traits have the power to set us apart even with the best of interventions in place. As I examined my own history during the course of my formal diagnostic evaluation, I was quite simply blown away by the sheer magnitude of OCD facets of my personality. And despite the knowledge that was gleaned from that process on the impact that my various obsessions and compulsions had on my development as a child and on my life as an adult, it took reaching a point where my life had become unmanageable on a fundamental level to realize once and for all that I was the only one that had the ability to make the decision to convince my brain that it was time let go.
You see, the obsessions can be comforting. The compulsive behaviors are familiar—ingrained, even—and they provide stability and structure in times of chaos. Some people may thrive on chaos, but I am not one of them! I crave stability, structure, predictability, which I believe stems from fear of the unknown and of my inability to handle change. So for all of the years that my obsessions and compulsions thrived, and as much as I was able to recognize the potentially destructive nature of more than a few of them, I was powerless to stop. I needed the obsessive thoughts, the controlling compulsions, and engaging in these allowed me to exert control over an existence that threatened to overwhelm me at any given moment. Through what could be considered a most unfortunate series of events, I have been learning to let go of some of these familiar, but ultimately self-destructive, ways of thinking and behaving. But it took a life-altering moment in time to get me to that point where I could finally recognize what some closest to me had been urging me to acknowledge for years: No good could come from my unwillingness to let go. Honestly, to this day I don’t think that any of these well-intentioned people—some of whom love me—had the first clue as to how impossible what they were asking of me really was. “Just Do It” may work as a fitness-shoe logo, but to individuals mired in self-loathing who are engaging in self-destructive patterns of behavior … not so much. I had to be dragged kicking and screaming to the point of surrender. But once I was able to reach that point, I was amazed to discover that letting go of some of that which goes to the heart of my autistic characteristics actually made me even more ready and willing to embrace the beauty that is to be found in my quirky little autistic heart and soul.
So the moral of this story? As happens on a fairly regular basis in my life, I can’t help but examine my own experiences from a critical, third-person eye and look to find the lesson to learn. Much of my teacher-training in various forms centered on behavior modification. I absolutely see the value in the principles of Applied Behavior Analysis, and they have served me well as a mother and a teacher. In my own journey to the realm of sanity, I have used them on myself. But a lesson I have learned that I would like to pass on is this: Not one of us is going to be able to make the meaningful, perhaps life-altering changes you desire for us until we are good and ready to do so, regardless of what kinds of well-meaning incentives or external motivations you might provide. What you can do is to provide us with a safe, nurturing, and completely accepting we-love-you-no-matter-WHAT place. Give us that space in which we can recognize for ourselves the value that can come from the surrender of that which we may believe has kept us sane for as long as we can remember. Then and only then will we have a clear shot at breaking free.
Shout out to the AirTran and TSA agents at Jacksonville International Airport. You guys rock!
We are on vacation and Cameron was leaving our vacation spot to visit his father for a long weekend. His flight was out of JAX, which is a little over an hour's drive for us. Thirty minutes into the journey to the airport I asked Cameron if he had his wallet with him. Now mind you, 30 minutes into the journey was the wrong time to ask this question, but I thought it was a routine question that really didn't need to be asked. So imagine my reaction when the answer was not an automatic "Yes," but something more along the lines of "Maybe" which directly translates to "No." Cameron clearly didn't understand why my hair stood on end and I became a slightly distracted driver when he informed me he had not brought his wallet. "Cameron, how are you going to get through security without an ID???" Suddenly he got it, and panic ensued for both us.
Luckily I had a friend in the car with me, who calmly called AirTran to inquire about ID requirements. For passengers under 18, no ID is required. I knew this, but worried that it would still be a problem since Cameron was traveling alone. I had actually thought of this trip as a test for Cameron. He would be traveling out of an unfamiliar airport and would need to find his way to the gate without having ever set foot in that airport before. I felt he was up to the challenge, but prepared myself for sitting on pins and needles, waiting for my phone to ring as he made it to the gate, and again when he boarded the plane, and finally when he landed at his destination. Now knowing he had no ID on him, I worried about him being held up at security, and possibly being denied entry into the gate area.
Upon arriving at the terminal, we went to the check-in kiosk to print Cameron's boarding pass. I was showing Cameron where his confirmation number could be found, and the AirTran agent came to ask if we needed any help. I explained that Cameron had no ID, but that he was 17, and asked if it would be a problem going through security. (No mention of ASD, or attention issues, or any of my other canned excuses when I'm seeking assistance.) The agent said that it shouldn't be a problem, but she would be happy to give the two of us (my poor friend was still waiting for my head to explode) a gate pass to accompany Cameron to the gate. I was so relieved! And so we headed to security. Cameron handed his boarding pass to the TSA agent, and the agent didn't even ask for an ID. I was ready to jump in and explain that the ID had been forgotten, but my presence was unneeded. (I did have to remind Cameron to remove his liquids from his carry on, but I have to remind my husband of that too.)
My friend and I stayed back as Cameron walked straight to his gate. He sat right by the agent, as we again stayed back to await the boarding call. The pre-board announcement was made for those passengers needing extra time. I was about to go over to Cameron and suggest he ask to pre-board, but he had already gotten up to join the line. I started to give Cameron one of those canned excuses to explain his need to board first, but the gate agent didn't question Cameron when he handed him his boarding pass.
Cameron and I learned some important lessons on this trip. Cameron learned to take his wallet with him when he travels. And I learned that he doesn't need to take his mom with him when he travels.
Monday was the last day of work for Stephen, Cody’s Occupational Tech. A substitute will be here on Thursday to continue Cody’s care plan through the end of July. Then Josh, Cody’s new Occupational Tech, will start in August. But one of the things Stephen did before he left—for which I am most grateful—was to introduce lots of changes into Cody’s life. This has helped Cody grow and progress tremendously!
There was a time when Cody had a specific criterion for everything. He had specific restaurants he would only go to with Grammy, and specific restaurants he would only go to with us. When Stephen came along, he made sure to give lots of choices but if they went to a particular restaurant on one outing then he did not name that restaurant in the list of choices on the next outing. This way Cody could adapt to change but still have a say in choosing.
At first, Stephen planned the day according to a written schedule that was on the kitchen door for Cody to see. But as time went on he began to make changes in small steps. They might switch the time they did laundry or instead of making the bed right away they might work on math skills. Instead of doing vocabulary, they might work on computer skills.
As Cody became accustomed to these changes in his routines, he began to enjoy it more and more. Soon Cody was expressing his desire for change.
One day when Stephen had suggested they go play basketball, Cody said, “Oh let’s just do something different.” Stephen happily named off some other choices and Cody chose going to the bookstore. This made me very happy!
Before long, their activities were no longer limited to walks in the park and basketball. Soon they were going to movies. Stephen has always done very well at picking the movies Cody likes. He knows Cody doesn’t like kid movies. So they always went to see movies that two young men their age would go see.
They also went bowling. Cody had fun there as well, even though more balls probably went into the gutter than down the lane.
Miniature golf was a new experience for Cody. I can’t guess how many golf balls they might have had to chase down, but who cares? I was perfectly delighted to see the grin on my son’s face when they returned home.
Cody and Stephen visited the batting cages from time to time. Neither of them seemed bothered by the missed balls or the foul balls. And all the other patrons kept their windshields intact, so they didn’t mind Cody’s lack of baseball finesse either.
Cody enjoyed visits to the Nature Center very much. He is very intrigued by the jungle-like areas with paved pathways.
I think it helped Cody tremendously that Stephen was never shy around him. From the very start, the two of them almost acted like brothers.
Sometimes Cody would come out of his room from getting dressed and he would have his shirt half tucked in and half out. Stephen would squirrel up his face at him and say, “FIX YOUR SHIRT!” in a comical voice. Cody would laugh at him then pull his shirt free from his trousers.
There was lots of joking and horseplay between the two of them. If Cody began to get agitated for some reason, Stephen would growl at him like an attacking dog and that would make Cody laugh and he would soon forget what he what had made him grumpy.
Monday afternoon, Stephen’s supervisors from Cody’s service provider came and introduced us to Josh, who will be taking Stephen’s place in August. He seems to be a pleasant young man who takes great interest in his work. We talked for quite some time and we were impressed. But more than anything I was very delighted to see my son walking around and giggling with a huge smile on his face. This was a remarkable difference from his behavior in situations like this in the past. There was no nervousness, not hitting his head, no lamentation and no rubbing his ears. I was amazed!
I am sad that Stephen is leaving us. We will all miss him very much. However, I am happy that he is going on to a fulfilling job where he will be helping many people. But I’m thankful for all he has done to help my son and because of him Cody is handling this transition extremely well.
I leaned forward to listen as my best friend Tam described her son. “He pays such attention to detail. He remembers exactly where things are,” she said. “When he goes to summer school and faces a big crowd of kids, he gets overwhelmed. He's sensitive to loud noises, to busy scenes, to wearing socks and hats. When he's part of a play group, he'll usually hang back before joining the other kids. He's paying close attention, analyzing everything before he makes a move. And learning these things about my son helps me to understand some things about myself that I always took for granted … for example, the fact that I can't wear turtleneck sweaters or bracelets on my wrists, or why I hate wearing socks … it's because of the way they feel against my skin. I'm sensitive to touch, and I believe my son is, too.”
I understood, and moreover, I could empathize. Tam had come to these realizations by reading “The Highly Sensitive Child” by Elaine Aron (and I'd just finished reading “Quiet: The Power of Introverts in a World that Can't Stop Talking” by Susan Cain, a work with significant thematic overlap). Thanks to my relationship with my brother, Willie, I knew firsthand that many people with autism are also highly sensitive.
As Tam described her experience, a series of pictures flashed across my mind. Willie, wearing headphones at movies, so that the sound wouldn't overwhelm his senses. Me, pressing my hands to my ears as ambulances screamed past. Willie, unraveling his socks if he felt a single stray thread. Me, not wanting to wear my hair down (despite my friends' prompting) because I wasn't used to the physical sensation of hair resting against my neck. And—perhaps most significantly—the feeling I get before Willie has a meltdown, and the relationship between my (or my parents') level of calm and his ability to calm himself. I feel myself tense before he explodes, and I've noticed a correlation between the ability of the people around Willie to remain calm during a meltdown and his capacity to self-regulate his behavior. Offering him a calm, supportive, low-stimulation atmosphere cannot prevent a meltdown, but it can affect the severity and duration of one.
Indeed, there's something of a relief in knowing that these scenes are linked. There's something validating about the realization that I am a highly sensitive person, and so is my brother. And, moreover, knowing this helps me to better navigate my own life, and better support Willie in his.
And I wondered: What's the connection between high sensitivity and autism? What can people with autism teach us about the experience of being highly sensitive? To answer these questions, I turned first to Elaine Aron's 2009 article on the topic. Aron writes, “In brief, you can best sort out sensitivity from ASDs [Autism Spectrum Disorders] by keeping in mind two differences. First, social perception—HSPs [Highly Sensitive Persons] are generally more skilled at observing what's going on in a social situation, even when they are not joining in. Second, HSPs have intense imaginations and varied interests rather than narrow preoccupations.” Aron notes that many individuals with an ASD have a lower-than-normal sensory threshold, and may require higher-than-normal levels of stimulation.
With that in mind, my second question found a resolution, too. People with autism—be they more or less sensitive to physical stimuli—teach us that there is no one “right” way to experience the world. Every individual has a unique threshold for sensory input, and those thresholds are to be respected, even in the times when they're being stretched. Individuals with autism have paved the way to greater understanding of how sensory thresholds influence one's chances of success in specific endeavors. I think of Scott James' final experience in X-Factor (being required to stand in a small tunnel “filled with shouting, crying, rehearsing people”) and can't help but hope that someday, society may begin to honor and respect differing sensory thresholds, and, in doing so, empower people like Scott (and Willie) to share their gifts and succeed.
My son has completed his first week of paid employment! I have found Cameron’s employment to be an interesting exercise for both of us. I have had to consciously decide on how much parenting is appropriate in this endeavor of his. I think as the days go by, I’m getting the hang of things.
On Day One, I set my alarm and made his lunch—just this one time. He wasn’t sure if he would have access to a microwave, and I know best, after all, how to fit a full lunch into his thermos. Cameron took care of his breakfast and dressed in the dreaded work attire. He was to report to his office by 8:30, and was ready to leave the house by 7:30. The commute would take no longer than 45 minutes, tops. I drove him to the Metro station, leaving the house at 7:45. He called to let me know he had arrived, at 8:08. When he called me again at 3:00 to say he was on the way home, I felt like a child on Christmas morning. I couldn’t wait to see him and hear how the first day had been. Of course, I didn’t get an enormous amount of details, but that didn’t squelch my excitement. When he arrived home, I told Cameron to make sure his supervisor was aware that he would be out the following week. I was thinking he would take care of this when he arrived the following day. Instead, Cameron went to his backpack and took out a piece of paper with contact information on it. He called his supervisor that very instant, and made sure all was taken care of. I remember thinking how much easier my life would be if I handled things instantaneously like that, instead of putting things off until it’s more convenient.
On Day Two, I was a little more relaxed. We left for the Metro station 10 minutes later, and I was on pins and needles when I hadn’t received the “I’m here” call by 8:31. My phone rang two minutes later, and I fretted that Cameron was late on his second day of work. He finished early that day, and when he called to say he had arrived at the Metro station, he asked if it would be okay if he went to Angelico’s to wash dishes for a bit. When he arrived home, I started grilling him about his arrival time that morning, and whether or not he considered his arrival on time or late. He informed me that he wasn’t expected to start until 9:00. “Are you sure, Cameron?” To which I received, “I’ve been there yesterday and today, and they said I start at 9:00.” Instead of emailing his supervisor to verify this information, I decided to let Cameron put me in my place, and let this be his job.
On Day Three, Cameron decided to ride his bike to the Metro station. He arrived at his office at 8:48, as he did for the remainder of the week. He has been more conversant this week than I can ever remember. He is clearly proud of having a job, and even answered “yes” when someone asked him if had made any friends. So, all in all, it has been an exceptionally good first week on the job. And he did it all without any meddling on my part! Admittedly, I did have to reel myself in a bit, but thankfully Cameron is showing great patience with me as I learn on the job.
When I was 14 years old I had my first kiss. It was during a slow dance to the song “Back at One” by Brian Mcknight. It was a kiss full of emotion and a slight bit of shock that it was actually happening. Looking back now, though, the reason I remember that moment so well wasn’t because it was my first but because of how I remembered that song playing in the background.
If autism has given me any one gift I think it’s the ability to retain information in unique ways that most other people can’t. I can remember Howie Day’s song, “Collide," playing in the background at our school gymnasium when I fell in love for the first time. I remember when I was 10 and was listening to “I Want It That Way” from The Backstreet Boys. (Yes, I wanted to be the sixth member of their boy band way back when!) The morning of the first day I switched schools to a private school for students with learning disabilities. Even while I’m writing this article I’m listening to a playlist of R&B Slow Jams that I listened to while studying for my first test that I got an “A” on in high school. For me, a long list of moments in my life can be broken down one way or another into a song.
I think this type of focus has contributed to my overall development and it serves as a constant reminder of why we must continue to play to our strengths while at the same time working on our weaknesses. I think too often people in our lives focus on “deficit-based learning” where we look at how to address our weaknesses without focusing on our individual strengths as well. I see this as a huge problem especially for autistic adults.
Regardless of my weaknesses, I’ve always stressed that my abilities (like retaining moments in my past through music) have been basically like superpowers to me. Sure I may never be able to fly, walk through walls, or turn into a green rage monster whenever I want, but having those powers would take away one of the greatest gifts I think anyone is ever given and that’s individuality. If we could start considering everyone as superpower-based on his or her own strengths we would be so much better off.
Think about it. A collection of “Avengers” that consists of everyday heroes of all different abilities. A lot of people look up to these comic book characters as role models when, in reality, every time someone looks in a mirror they are looking at a potential hero full of endless possibilities.
So regardless of what your strengths are, just remember to play to them as much and as well as possible. Even if you don’t know your main strengths, focus on pushing yourself to understand what they are. Get out there, ask questions, and remember to look towards your loved ones for guidance if all else fails. One thing about being an adult is having the confidence in yourself to advocate for your specific needs. This can be tough but one thing I’ve noticed through being an autistic adult is that the only way you can fail in this is if you don’t try. Hockey player Wayne Gretzky once said, “You miss 100 percent of the shots you don’t take.” Please remember to take your shot because it can truly lead your way to greatness.
Few things have the power to drive a person as crazy as a move … and a long-distance move has the kind of crazy-making power that most other life events can only dream of possessing. As a friend reminded me this week, in the list of major life stressors, moving makes the top three; it's right up there with death of a loved one and divorce. It's no wonder, then, that every little thing seems to elicit more stress than usual for me this week. As I type, my husband and I are preparing to begin a three-day move to a small town in Alabama. Starting tomorrow, we'll be driving away from five years in the same Washington, DC neighborhood and starting a new chapter in our story. We're moving into a home we own in Alabama. We've never lived there together, however, since we met and fell in love at L'Arche DC (a faith-based non-profit that creates homes where people with and without intellectual and developmental disabilities share life together).
Why the decision to move? Both of us have started our own businesses this year; mine is in writing and web copywriting, and my husband's is in web hosting and remote technical support. As such, we've decided to relocate from the big city to a small town in order to live more simply and enjoy more time together. (Ironically, it takes a big, complicated process to arrive at that simpler life!) As I wrote in a recent A Wish Come Clear post, “Everything [is] in transit, everything [is] in flux. For a couple who likes their daily routines, this is a destabilizing prospect.”
Destabilizing indeed … and that word makes me think of my brother Willie, and how important his daily life routines are to him. As my husband and I go into moving mode, I realize that even small changes to Willie's regular routine may make him feel the way I am feeling now: disoriented, displaced, and generally distressed. My husband's family moved many times in the course of his childhood; my family, by contrast, moved just once, when I was less than a year old. My brother has lived in the same house for his entire life, and at this moment, I cannot help but wonder if that is no coincidence. I wonder if, perhaps, my parents wanted to spare him—and me—the generalized chaos that's caused by a move.
I also find myself struggling with feelings of over-reactivity this week; the slightest unexpected change in my schedule sends me reeling. Even though I know better than to give into it, there's still an irrational sense of panic dogging my heels. I wonder, Is this what Willie feels like before he has a major meltdown? As moving day draws near, I coach myself with the self-soothing techniques that work for my brother. I'm taking deep breaths, and reminding myself that, in the long run, small mistakes and miscalculations are, “No big deal.” (In short order, I think I'll need a rug to roll up in; the sense of calming pressure that comes from Willie's technique sounds pretty good to me right about now.)
Rationally, I realize that everything will get done and that, as minimalists, my husband and I are actually more prepared for this big move than most. And there's also a fierce excitement running through my veins, the kind that makes it hard to fall asleep at night. There's a feeling of imminent adventure, a freedom found in letting go and starting over.
And that's the beautiful gift within the stress of our move: the ability to understand what it might be like to experience life as Willie does. To gain empathy for his need for structure and admiration for his courage when he faces change. We learn by going, after all, and this move is teaching me compassion, for myself and for my brother. I remember the words I wrote in a recent feature on Extreme Sports Camp: “I wonder if, despite the fact that Willie loves routine, such an experience of exploration might be just what he needs.” I wonder if it might not be the same for me.
In the past few years, I have attempted to play a lot of sports, from baseball to soccer and even floor hockey. My favorite sport out of the whole bunch, however, is golf. Whereas most of the other sports I play are primarily focused on many people working together as a team, golf is a sport in which an individual player’s skills are most important. I am still learning to develop these skills for myself as well as the discipline needed to play well as a golfer. I am currently participating in a clinic which has helped me immensely in learning this discipline.
I am taking the clinic with a large group of other people with special needs; I know some of them from various other sports and activities I participate in, but I am also making new friends at the same time. Our teacher helps us to understand the nuances of the game. He has been very friendly and helpful, and he takes time to help us all out individually with a few small pieces of advice which have helped each of us to greatly improve.
On our first day, we learned golfing terminology and some famous golfers and tournaments. I was familiar with most of the terms he taught us from playing golf-based video games at home and watching golf tournaments on television, but it was interesting to learn about where they came from. For instance, I knew that the portion beside the fairway was called the rough, but I never knew that the rough has such a name because the terrain in these areas is rough and gives golfers a hard time trying to hit their ball back out onto the fairway. I was surprised that such reasoning had never occurred to me before.
After these first lessons, the group practiced long shots on a driving range. Driving is one of my favorite parts of golf and it was a major focus of another golf program I have taken in the past. I did learn a lot of new things about driving through this clinic which have helped me to greatly improve my swing. The next day, the group practiced chipping and putting. Once chipping practice was over, it was time for my second favorite part of golf: putting. Several groups of pins had been placed onto the putting green to serve as small practice “holes.” Using a putter with a flat part designed to hit the ball in a straight line, I attempted to put my ball through each pair of pins. This was somewhat similar to the putting I had practiced with my other golf program, but unlike the green I had been on then, this green had a lot more curves, hills and valleys, making it harder to line up a good shot. I tended to miss my intended target more often than I got the ball cleanly through the pins, but I did get a better sense of what it must be like for professional golfers who often have to wage battle against the course itself in order to get the lowest number of strokes possible.
As I write this, I have yet to participate in the last day’s events which will include a “captain and crew” game on the golf course. From what I understand, we will be divided into various groups and practice all that we have learned on the actual golf course. I have never practiced on a real golf course before, so I look forward to the experience and to see if I can play well under more authentic conditions.
I feel that I have greatly improved through this golf clinic. I have been having a lot of fun and I have gotten a lot of great exercise. I enjoy trying new things like golf because it allows me to experience certain parts of life I have never encountered before. I usually feel nervous about doing them at first and I may perform poorly in the beginning, but as I receive guidance and encouragement, I find that my skills improve as time goes on.
Also, being able to step out of my comfort zone and do new things helps me to learn about new concepts and ideas in other areas of my life. I have discovered that perseverance and practice are key elements to learning this game just as they are key elements with anything else I have had to learn in my life and will continue to learn as time goes on. Also, I am not just staying in one place. I am getting out and taking on new challenges. I feel that this is an important part of one's life because there are many opportunities to learn new things if you know where to look. You might surprise yourself and excel in areas you never thought you could along with finding out that you actually enjoy the new experiences.
For the typical teacher—and no, I’m not 100 percent sure what that is—the last day of school brings with it a myriad of emotions not unlike those experienced by the 18-and-under set. Contrary to what many young people would like to believe, we are working just as hard, perhaps, some would say, even harder, than the students themselves. Yes, we’re getting paid to be in school, but the enormous weight of the importance of our jobs to our students’ future cannot be measured in dollars and cents. So summer break arrives at a point in time where most, if not all, teachers have been counting the days right along with the students in their care. We’ve been dreaming of this break at levels at least equivalent of those we teach, if not more.
As a special-education teacher, my summer vacation is not quite on par with that of my general-education counterparts. I have three weeks “off,” then school for six weeks, and then two weeks off again at the end of the summer. Having been in circumstances over the past few summers where I was not working from June through August, I have come to the conclusion that this summer’s routine is going to be just as beneficial for me as it is for the students who qualify for Extended School Year (ESY). The intent behind ESY is to allow for students with IEPs to avoid that big gap in programming that would most likely result in significant regression in skills.
While I cannot speak for every teacher who happens to have an autism spectrum or related diagnosis, I know that for my own sake, I am much better off when I have just enough time off to rest and recharge, but not so much time that I find myself slipping headlong into a somewhat numbing, isolating routine. That’s what happens to me when I get too much of a good thing, such as vacation. I spent last week—our first week off here in my corner of Pennsylvania—talking myself out of going into school to get things ready for ESY. The compulsive nature of my wiring drives me, and when I am “on a roll” such as I have been for most of this school year, I am afraid to stop for more than a day or perhaps two. Any more than that and fear creeps in that I will fall into the trap of procrastination shared by so many of my ASD fellows. I will go from being driven to accomplish all that I am responsible for and then some (so many ideas just waiting for me to have time to start implementing them!) to a shut-down mode that keeps me sedentary and effectively useless for days or weeks on end.
This summer will be different than summers past, because my future is as secure as I could hope for, and I love what I do for a living. That love will motivate me this summer during my vacation to keep my head out of the dark recesses of my autism. There’s so much positive I can focus on that I am more optimistic than ever that I will have little difficulty using my Aspie powers for good instead of evil in the coming weeks. I can only hope that my students who will be joining us this summer will see – if not now, than one day, perhaps! – that the more practice we have in finding that balance, the better. I did not go into school last week, and I somehow managed to not feel completely crazed by taking my first full week vacation since 2011. As for the next two weeks, let’s just say I’m planning on taking it one day at a time!
By the time you read this, my son will have arrived at his first day of work for his first paying job. I am thrilled beyond words. I had hoped this day would come when I made the crosstown trek in rush hour, to wait in line with hundreds of youths in a school gym, as we provided evidence of our residency in the District of Columbia. That was early spring, and I was filled with anticipation, in hopes that Cameron would be able to find a meaningful job placement to take the place of ESY, or summer school. It seemed like such a great plan: Enroll in the Summer Youth Employment Program (SYEP), find a placement at a pizza restaurant, and Cameron would have a legitimate work experience earning real money. Only, when the job database opened for participants to apply for openings, nothing seemed like a suitable match for Cameron. At all. SYEP isn’t a program for youths with disabilities, so what was I really expecting? I chalked it up to another ride on the roller coaster of parenting a child with ASD: The thrill of a plan shaping up followed by the defeat of things not going according to the plan.
I tried reaching out to the program coordinators for assistance in finding an appropriate placement for Cameron, but my emails went unanswered. I went about planning the family vacation and Cameron's visit with his dad in Atlanta, assuming that paid employment would be awhile coming, and from another source all together. Then one day last week, Cameron showed me an email from the SYEP office. It was a reminder that he needed to attend an orientation session in order to get a job. I decided to make another crosstown trek in rush hour to get Cameron to the orientation, and hopefully find someone to talk to about job possibilities. I did speak with a very helpful program employee, who took my information and promised an email to follow up. Still nothing. But what was becoming clear through this process was that I had misunderstood how the program worked. Participants were encouraged to apply for preferred jobs, but an assignment would be made regardless of whether or not any applications were submitted by the participant. Hmmm … what type of placement would Cameron be assigned? He had not been able to attend the job fair to meet potential employers, and the orientation session he went to was a last chance event, as he had missed a prior session he was scheduled for. And since I had made those vacation plans, how would his employer react to Cameron asking for two weeks off from a six-week program? Really, what was the best I could hope for? Pooper Scooper at the dog park maybe?
When Cameron's job assignment came, it was clear that someone had been listening. Cameron is working in the mailroom at the Department of Disability Services. His supervisor of record is a Transition Specialist with the Rehabilitative Services Administration. Mind you, it's no pizza restaurant. But I think this will be as compassionate a work environment for Cameron as one could hope for. Cameron's only issues with his assignment are the 8:30 a.m. start time and the "business" attire. I pointed out that if he were in summer school, the bus would be arriving at 6:29 a.m. and quickly put an end to his "early" start time grumbling. I'm sure he'll adjust to having a collar on his shirt soon enough as well. I cannot wait to see how this experience goes for Cameron. I'm so glad I made the decision to skip ESY this year, as the job skills he learns will truly have an impact on his future employability. And just so he doesn't stray too far from his dream, Cameron wants to put in an hour a day washing dishes at Angelico Pizzeria after he finishes his five hours at DDS.
As of right now, Cody doesn’t stay at home by himself. But that day will come and we have to make sure he is prepared.
Part of what Cody’s Occupational Tech, Stephen, does when he comes here will help. Making sure Cody knows a routine is imperative to his success and safety when he is home alone.
Simple things like knowing how to get his morning coffee. We have a brew station that automatically comes on and shuts off. All he needs to do is know how much creamer to put in first. So we put a small measuring cup with a clear black fill line drawn on it so it will be easy for him to know when enough is enough. Then he can simply put his mug up to the spout and press the dispenser lever, and voila! He has coffee.
We have simply-made, breakfast foods that can be microwaved in a pinch. Our microwave has express buttons to push for anything that can be heated in one to five minutes. Having lots of instructions—with tasks broken down into small increments—posted around that house will be key in helping Cody be more self-sufficient when the need arises. For example:
Cody has a morning routine down pretty well. He gets up and has his coffee; then it’s time for breakfast. When breakfast is done, he brushes his teeth and gets dressed. But it will be important for him to have a routine for the rest of the day as well. Making posters with reminders of what to do next is a good way to ensure he’s not just wandering around the house with nothing to do. Having nothing to do leads to boredom and boredom can lead to trouble. Cody can get frustrated in a very short time, which can lead to a heartbreaking meltdown.
Planning ahead will be crucial. Making sure there are small cartons of milk and juice available will make life easier, too. And what about a simple, inexpensive cell phone? That way, Bill and I can call to check on him and not have to worry about him answering the home phone and giving away information to people who would take advantage of him.
That leads to the question of emergencies. Stephen has been working with Cody on making sure he knows his address and telephone number to give to 911 if a dangerous situation arose. We also need to make sure he knows to exit the house quickly in case of a fire and to call 911 to let them know, then to call one of us so we can make a bee-line for the house and call nearby relatives to get there and make sure Cody stays out of harm’s way.
Buying a cell phone ahead of time and having him practice using it is going to be on our list of things to do soon. Cody has a birthday coming up. Perhaps this would be a great gift for him. He actually loves it when he gets calls. Missouri recently activated the no-call list for cell phones. Cody’s number will be added to that right away.
If he has a cell phone, then something as simple as making sure he has shorts and jeans with front pockets or even t-shirts with pockets will be important. This way his cell phone can be on his person at all times.
There are a million things one has to think of when planning for an individual on the autism spectrum to be able to be self-sufficient while parents and guardians are at work. There will come a day when day-hab services may not be available anymore. And for us the list of people we can trust to stay with him for those hours is dwindling. So there will be lots of preparations for operation HOME ALONE in the months ahead.
Last week, I read a blog post entitled, “What's Right Now” by well-known “clutter buster” Brooks Palmer. Brooks has a gift for getting to the heart of clutter issues, and I read his insightful posts for the psychological insights and human drama. In reading this post, I found myself remembering a particular day of decluttering I'd done with my mom, and what we uncovered during that time.
It must be said that my mom is an incredibly patient and supportive parent. She doesn't love decluttering in the same way that I do, but she does enjoy creating order, and she loves spending time with me (even if it's clutter-busting time). On the day in question, our chosen project was my brother Willie's closet. It's a tight space, but that day, it was filled to capacity with old projects, outgrown clothes, art supplies, and various odds and ends. We filled trash bags with discards and donations, moving along at a good clip. Of course, the stuff became overwhelming at times; more than once we both stood in awe of the objects that had managed to make their way into Willie's closet.
There were difficult decisions to be made; Mom knew that we couldn't keep every piece of art Willie had created, and it was tough to choose between them. At my suggestion, we kept a few of the best creations, hanging them up in the closet and the bedroom so that they'd be on display. The hardest things for my mom to part with, though, were the ones that represented Willie's learning process. We unearthed a phonics-based program they'd used when Willie was younger (complete with floppy disks), old math worksheets (many filled in, but a few stacks still blank), and hundreds of tiny plastic figurines that had helped Willie to learn personal pronouns and storytelling skills. These things had been part of Willie's early intervention program, part of the reason why he can do so much today.
Even though these things hadn't been used in years, Mom was reluctant to let them go. To me, it seemed obvious. The materials were out-of-date and out-of-use, clearly recycling material. But then I looked into my mother's face, and I saw what they signified for her. These weren't just outdated educational materials. These things represented hours upon hours of time that she had shared with her son. They represented her dedication to helping Willie learn and grow. They were proofs of proactivity, proofs of dedication.
The downcast-yet-determined expression on her face seemed to say so much. If I read it correctly, it said, “Willie, we did all of these good things together, and yet sometimes, when I think of your life now, I wonder if they helped at all. You're stuck in a cycle of self-injury, hurting yourself and others, and so many of the gifts you have go hidden because of it. And yet these things remind me that I didn't give up on you and your potential back then, and I'm not going to give up now.”
All at once, I remembered an earlier decluttering session Mom and I had done together, this one focused on the basement toy closet. When we'd come to an old baseball and mitt, I couldn't understand why she didn't want to part with them. When I asked her, she burst out: “I thought that maybe someday Willie would play.” And as I reached out to hug her, I understood. It can be very, very hard to let go of past dreams, to let go of what might have been and never was. It can be very, very difficult to face “what's right now” … and yet facing what's real in the present is, I believe, a powerful prerequisite for acceptance, and, ultimately, freedom. I enjoy decluttering despite its difficulties because it's a liberating process.
Ultimately, Mom and I decided to give away both the baseball equipment and the educational materials. Yet even so, there's a part of me that's glad my mother kept them so long, so that I could be with her in the letting go … and so that I could see what love looks like.
For many Aspies, that's loneliness.
In a MAD Magazine satire, a character says “I don't need anything ... or anybody!” The guy next to him asks him something like, “So how do you feel?” The first guy replies, “So lonely I could die!”
Well, for many years that was just the literal truth for yours truly—right down to that last part.
Even to this day (which I do realize I'm lucky to have lived to see) I ask myself, more often than I'd like, “Why can't I have more friends, like everyone else?” (Note to self: Try not to OD on people's group Facebook photos. Or their Wall posts and comments describing their fun times together.)
When I read about top high schools actually asking seniors—and their teachers and counselors—not to publicize which colleges have accepted them, to avoid hurting the delicate feelings of those who didn't get into Harvard or Yale or Brown (all of which rejected me, by the way) or wherever, I have to laugh and shake my head. Never mind that we're talking about places including Horace Mann and Bronx Science—if you go to school there, you already beat the odds (not to mention many competitors).
I'm living proof that even if everyone else enjoys acceptance and personal affirmation beyond your grasp, and parades it every day like it's nothing—which it is to them of course—you might even find a way to survive.
Memo to some of the top high school kids in New York: Grow up, gird thy loins like the men and women you like to think you've become, and get some perspective! You are spoiled brats who know less about suffering and rejection than my dog does. And I haven't got a dog.
Meanwhile, yes I know that no friendship is always smooth sailing, and sometimes friendship entails sacrifice, conflict and even breakup.
Depending on how I'm feeling, sometimes that sounds to me like telling a kid with leukemia that everyone else gets a sore throat and runny nose once in a while, and some people even get the flu.
Then a little voice pipes up: No, Jeff, in your case it's not leukemia, you self-pitying disgrace. More like lung cancer after decades of smoking four packs a day.
Counterpoint: Either way, leukemia or lung cancer with good friends and most people liking you may be better than what we've got now!
If all this sounds like an echo from years and decades ago, to some extent it is. Way down deep inside this happily married man, multiple-time Toastmasters officer and father-to-be is still the desperately and inconsolably lonely, sad and frustrated child, adolescent and young man.
Because my previous columns have so far been about more abstract concepts, I thought I would share some practical advice on an area in which many autistics struggle: interpreting body language and facial expressions. Obviously this is a topic that could take up an entire book, or an entire library. This will be but a brief introduction to interpreting the musculature dances neurotypicals use to communicate.
The first, and in my opinion the most important, type of nonverbal communication is facial expression. Something that helped me personally in this area as a teenager was the fact that I loved to draw, and drawing is all about learning how to see. In fact, online tutorials made with the intention of teaching artists to draw accurate facial expressions are some of the easiest and most accessible tools for learning to interpret said expressions. One of the best for this purpose is the tutorial by “tracyjb” on the website DeviantART and I recommend it for artists and non-artists alike.
Being a student of physiology and anatomical sciences gives me a benefit when it comes to reading body language and facial expression, simply because it is easier to understand why people make the motor movements they do in response to certain stimuli. Reading body language doesn’t have to mean learning to read the code that neurotypicals naturally speak, it just means learning to interpret the signals the body gives off. Dilated pupils can be an indication of fear, anger, or sexual arousal, for example, because all these things require letting more light into the retina to see better. But cultural elements are very important; an eye-roll isn’t quite a natural process, it’s a learned social response likely developed from the fact that looking away indicates disinterest. Learning both innate physical responses (like flared nostrils, rising color, and smiles that don’t flex the eyes) and learned cultural responses (like eye-rolls, shrugs, and that special eyes-wide-forced-smile at the third person in the group to indicate that the first person is a total weirdo) is essential to building a full picture of facial expression. With time and understanding, I would argue that an autistic can become indeed more proficient than a neurotypical at reading people. Critical analysis beats innate I-don’t-know-why-I-just-know understanding every time.
Body language is easier in some ways and harder in others. Body language is usually more consistent from person to person (within a specific culture) but body language isn’t always as black-and-white and straightforward as its more complicated yet more telling cousin, facial expression. For example, an indication of romantic interest is self-grooming (running fingers through the hair for short hair, twirling or playing with the hair for long hair, etc.) yet self-grooming can also be an indication of nervousness and anxiety. Context is very important with body language. None of these signals are displayed on their own. If a man is running his hand through his hair over and over while breathing heavily with dilated pupils, maybe he’s not being so flirtatious as much as nervous. But if he runs his hand through his hair in a slower, more relaxed way, breathing deeply with dilated pupils, he might just be flirting after all. Crossing the arms or hands in front of the body is typically a defensive, anti-social gesture (little did I know this is why people found me stand-offish) but again, not always. A girl who is crossing her arms in front of herself with her head down while wringing her hands is probably nervous or upset, but a girl who is crossing her arms in front of her while smiling and giggling might be shy and flirtatious.
When one first starts on this nonverbal journey, body language may seem daunting. It can feel like it’s just too complicated, there’s too much to learn, you’ll never be able to master it all. But remember, verbal language is just as complicated. “I once knew a woman with a large white hat with depression,” doesn’t mean that her hat was the one who was depressed. We know these things because of context, the same way we must interpret body language. The human brain has a practically unlimited capacity for learning and understanding. Like anything else, interpreting nonverbal cues takes effort and practice. Cold readers do this for a living, be it as psychics or interrogators. The art of reading people is a skill. Remember, just because this stuff doesn’t come naturally to us doesn’t mean that autistics can’t learn.
This is the time of year when a student’s milestones are often celebrated. I’ve found myself becoming unexpectedly emotional about the milestones reached by those around me. The brother of my daughter’s best friend walked past me the other day in a T-shirt his 5th-grade classmates had autographed. I started tearing up at the thought of the 5th-graders moving on to middle school, no longer seeing the friends they’ve been with on a daily basis for half their young lives as they enroll in an array of different schools. Then while on Facebook, I saw pictures of my best friend’s niece, decked out in cap and gown for her high school graduation. A lump in my throat formed while I thought of her moving out of state later this summer, attending her parents’ alma mater. It seems everywhere I turn, I’m wiping my eyes as children around me reach major milestones.
But then I started to think about how Cameron had reached similar milestones, and I’ve never become emotional over his accomplishments. He’s participated in a ceremony signifying the end of middle school, received various certificates of achievement over the years, and has even gotten a medal for attendance. Call me cynical, but I’m somewhat jaded by award ceremonies where everyone gets an award for something. Perhaps this stems from my own experience as a softball player in 7th grade. The rule was that everyone received a game ball during the season. I received my game ball during the final game. The same game I missed because I was at a Rick Springfield concert. Needless to say, the game ball was not something I cherished. (Which was not the case with my Rick Springfield T-shirt!)
So I’m left wondering why I am experiencing the accomplishments of others with such emotion, and my own son’s accomplishments leave me dry-eyed. I’m a bit ashamed to admit this, but I haven’t even purchased Cameron’s school portrait for the last two years. Perhaps the reason the milestones go by without me tearing up is because deep down I realize how long the road before him stretches. When I think of my best friend’s niece graduating from high school, and all that entails, and then compare that to Cameron earning a high school diploma, I realize that aside from the funny hat and robe, there is very little similarity between the two. While for most seniors, graduation is a giant step forward into adulthood, for a student with ASD, graduation can mean a leap into the abyss. After the party’s over, and the cake crumbs have been vacuumed up, what next? Again, call me cynical, but I’m not finding a wealth of postsecondary educational opportunities out there for a student with a sub-70 IQ. And the programs that are out there focus on things that Cameron has already mastered. Perhaps the reason my emotions have been in check is because those emotions are so mixed. While my heart swells with pride with every accomplishment Cameron makes, I also realize how much further he has to go before his work is done. And if I think about the unknown that lies ahead, I may find myself crying for a different reason entirely.
The first time I ever came out about being autistic publically was when I was a college freshman at Seton Hall University. I remember it like it was yesterday. It was during my Oral Communication class when our professor told us to do a presentation on something we had a passion for. In high school I went to a school for students with learning disabilities (LD). During this time I had become an advocate for disability awareness but never really mentioned to anyone what my disability was because everyone had something so we all knew we were on the same playing field.
In college it was different. While 100 percent of the students in my high school had a learning disability (160 out of 160), in college it was less than one percent (350 out of 5,500). Many of my peers had no idea what autism was. This gave me the opportunity to educate them. It was one of the bigger challenges of my life. That day my presentation was focused on educating about autism, with the concluding statement being about the fact that I was indeed autistic. It led to a standing ovation by my peers and then the beginning of a disability movement at my school.
After taking some time to reflect on those events almost five years ago, I came to realize that not only was this about spreading awareness but also finally realizing and becoming comfortable with who I was as an individual. In high school I couldn’t help but feel that many of the students were weighing themselves down with negativity because of the fact that they were learning disabled. That a learning disability was the deciding factor in whether someone would succeed or fail in life. This is never a concept I wanted to imagine. Instead, I encouraged myself to see my disability as an ability and to focus on my strengths while working on my weaknesses.
This attitude I believe was the reason why I became accepting of myself as an autistic individual in college. The positivity I had about my abilities made any negativity or ignorance that came my way obsolete. It was really that simple and because it was that simple I came to realizations about ways to adapt this into other aspects of my life. From taking up new hobbies, to asking girls out on dates, to doing things I never thought I would see myself do, as long as I saw a positive light shine through nothing could stop me. I was a flashlight of never-ending opportunities and confidence.
Today, being positive and accepting of who I am has even led me to freelance writing. I’ve never seen myself as a great writer before, but when Autism After 16 showed up on my Google news feed one day I knew this could be an opportunity to again educate and spread awareness for disabilities. My goal through this column is to encourage and give tips on how to live your best life possible—autistic or not—based on my experience. The more community-based we make this the better, so feel free to send me your comments and questions as the column goes on.
On the evening of my 27th birthday, I came home to several voicemail messages, but one stood out above the rest. It was from my family, and as I hit play, I felt a wave of loneliness, despite the day I'd had. On my birthday, I'd spent time with wonderful friends and been blessed by their presence and generosity, yet there's something about hearing the voices of your family members that makes you feel (and grieve) the distance that separates you.
The voicemail began with no introduction, save for the soft sound of my mother's voice counting in the background, “And one, two, three!” I knew what was coming next; it's a tradition in our family to call and sing happy birthday to one another. But I didn't expect such a swell of voices; it sounded like my parents had a whole choir and an orchestra backing them up as they sang. And then it hit me: My grandparents were there, singing along with my parents, and my brother Willie was singing and playing the piano to accompany them as well.
They sang "Happy Birthday” together—sometimes on-pitch, sometimes not, but even the off-key moments were beautiful to me—and then each person spoke into the phone individually, saying, “Happy Birthday, Caroline!” in their own specific, heart-wrenching way. It was overwhelming, hearing their voices wish me well one by one, and yet, I never wanted it to end. I felt, paradoxically, like I was both farther away and closer to them than I'd ever been.
And even though I couldn't see Willie playing the piano, I could picture him perfectly, and a swell of pride rose within me. I love that he can use his musical gifts to lead our family in song. I love that, in moments like these, he can be at the center of a celebration and play a vital role.
Yet when I called my parents to say thank you the next day, I heard from our dad that Willie had had a difficult time that afternoon. He'd banged his head and lashed out with aggression at our mom when she was alone with him, before our dad had arrived home from work. My stomach drops when I hear accounts like that; even though Mom came through all right that time, there's always the fear that next time, she might not. Moreover, the trigger for Willie's rage that afternoon was, in fact, his piano; apparently, he'd been practicing a piece and grown increasingly frustrated that he couldn't get it right. We're two peas in a pod, my perfectionist brother and me, but how I wish he could give himself more grace, more room to make mistakes.
So here is how things stand: My brother played me a beautiful serenade for my birthday … and he also hurt himself and tried to hurt our mom the next day. It's a difficult thing, to hold these two truths side-by-side, to accept both as the reality of where Willie is now.
There's a part of me that feels guilty whenever I write about Willie's gifts, because doing so can feel like turning a blind eye to his difficulties. I don't want to negate or deny that Willie has significant behavioral challenges, which my parents have to manage and endure on a regular basis. And yet the capacity for celebrating Willie is essential to me; without it, I'm not sure I'd be able to bear the harder realities. My parents have told me that my stories help them, too. As such, I have to believe that I can—and must—do both: acknowledge Willie's struggles and rejoice in his victories.
In a few short weeks, my husband and I will be moving from Washington, DC to a small town in Alabama, and we're looking forward to this new adventure. Even so, the knowledge that I'll be farther from my New Jersey-based family than ever before is another hard reality. Yet when I listen to my birthday voicemail, I cannot escape a deeper truth: That my family's song sings within me wherever I go … and Willie's the one carrying the tune.
I have been thinking lately about what kinds of writing I want to do in the future. I do enjoy writing these columns, but I also want to further expand my horizons and see what other forms of writing I might be good at and enjoy working in. Thus, I have taken some steps to explore my options while sharpening my writing skills.
I have recently begun writing for my own pleasure for a few hours daily. I generally write down ideas for characters, settings, and other details I may want to include in fictional works such as a novel or short story one day. One of the writing classes I had in college recommended writing daily in this way to keep one’s writing skills fresh, and I do believe that doing this has helped me to compose better ideas and improve as a writer. I can write down whatever comes to my mind during that daily period of time, and later, I can go back and refine my ideas in order that they will work better for the form of writing I choose. It also feels good to get my thoughts down in a written form when they have been buzzing about in my head for long periods of time. In some cases, the ideas continue to form in my head even after I have written them down, evolving into forms which I had not initially anticipated. I enjoy going through the process of refining my ideas into engaging stories and poems, and I hope I will be able to find a way to get them published soon.
I also recently bought and read through a special issue of a magazine about the art of writing and the process of getting published. I thought it had an interesting mix of information and encouragement. I was particularly awed by a featured article which contained snippets of writing advice from various professional writers who had written for the magazine over many decades. A lot of the advice they offered was repeated in other articles elsewhere in the issue. I was amazed that these tips, some of which had been written way back in the 1920s, could still be of great use to me so many years later. I will be taking this information to heart and putting it to good use in my future writing habits. The magazine also contained great information about getting published and finding an agent which I feel will help me to navigate the publishing business in the future.
While I have been working on improving my writing skills, I have also been researching various publications both locally and elsewhere and what they are looking for in terms of writing. I have ruled out some options already because they were very focused on politics or other areas which I have not developed a concrete knowledge or viewpoint of, but I have found that there are still many publications for which I would be interested in writing. In addition, I have learned of a person in my area that is planning on starting an online publication of their own and may be looking for writers. I will be contacting him to see if he would be interested in using me in some capacity. I would like to find some local work so I could become better known within my area, and I also hope that in the future some national publications will become interested in my work as well.
I have also learned that there are some local writing groups in my area that I feel could greatly benefit me in my writing career. I am investigating them at the moment because I have never been to any of their meetings before. From what I understand, they are made up of local writers who are looking to grow their skills. At their meetings, they share examples of their work for other members to critique and offer advice to each other as well. I feel that joining these groups could be very helpful to me because I could get a second opinion of my work apart from myself or my family. I think I might also find some new friends in these groups who share my interest in writing.
I am excited about delving deeper into the world of writing. I enjoy developing my writing skills and looking for further opportunities to write professionally. Each piece of writing I create brings its own challenges and helps me to grow as a writer, and I am keen on seeing what will develop as I continue to write.
As the school year draws to a close for our young people, reflection on things past comes to mind. I had the good fortune to attend three different awards ceremonies for high school students in recent weeks—two at the school where I teach, and one at the school from which my son will be graduating this week. In years past, attendance at ceremonies such as these has been known to leave my son feeling again and again as though he was never going to “find his place.” It was perpetually difficult for him to acknowledge how far he had come when it seemed to him (and yes, sometimes to me too) that he was always not-quite good enough to reach that pinnacle of success we have probably all aspired to at one point or another. Factor in the black-and-white, dualistic thinking that I think is par for the course with the autism spectrum, and we have a perfect storm for self-loathing in the making. Coupled with the anxiety that comes from end-of-school year transition for my guy and others in similar circumstances, awards ceremonies threaten to derail a year’s worth of self-esteem building in one fell swoop.
So I am thrilled to report that each of the three awards ceremonies I attended in the last few weeks ended with smiles, not tears … well, I cried, but that doesn’t count! My little boy received, among other amazing recognitions, a citation from one of our newly-elected state representatives. He was one of two students in his class of over 600 to earn this. And the smile on his face as he jogged up on stage and had that moment in the spotlight made up for so many years of disappointments, of feeling not-quite-good enough. I know all too well how easily the autism spectrum can work against a young person, having been that young person myself a certain number of years ago. It does not take too much of a leap to go from feeling invisible to feeling like a failure. When I look then at the students we honored recently at my school, I can’t help but think of all of the years many, if not most, of them spent in situations where they were either feeling invisible or wishing they were invisible. That place of wanting to be accepted as a part of the world in which we’re living, and then not understanding why something that seems so simple for those around us is so painfully impossible to attain. It becomes easier to withdraw, to stop caring, to stop looking for the approval and acceptance that others appear to have acquired with ease. And that withdrawal looks to be our choice, not unexpected for individuals with autism, right? It’s a vicious circle. This is one of the things that I find most amazing about the environment where I am building my career now. The fact that these young people have the chance to find success in a safe environment, then use those achievements both big and small as a scaffolding to greater achievements and bolstered self-esteem, is why I look forward to going to work every morning. I have to admit, I was downright scared walking into my son’s senior awards assembly. I knew he was receiving some recognition, and he knew that as well. God help me, I was scared that he was going to be getting recognized for extracurricular activities, which are valuable experiences but which I knew would leave him with that same empty feeling with which he’s walked away from more than his share of assemblies. I prepared myself for what I would say to him if he received accolades for something that a hundred other students were getting too (and that has happened). With my anxiety as high as it was, I could only imagine where his was at as the awards got underway. But with the honors he received my joy and relief was palpable. For that moment in time, he had the opportunity to see the gifts which come with AS, rather than the struggles that live barely beneath the surface, waiting to pounce without warning. He had found his place.
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