by Cody Hughes-Langlo
Way above planet earth
Getting cups of tea
Into quiet nights
Onto planet living
Into Rocky Mountains
Into cold air
Into see and, say
Beauty of trust
Companies of novae
Like a 9-year-old
Living like frogs
Climbing out into the snow
Like having some supper
Like coyotes and frogs and cows
And horses underneath the moon
Now into Christmas
Darkness and clouds
Bringing by the fire, books
See and say
About ducks and cats
Dogs and roosters
Bringing by campfire
To the bottom of the earth
Nice and quiet darkness
At night bringing by the fireplace
Taking, hands in the dark
Nice and quiet nights by fires
When I wear coats
See and say
Like quiet nights into darkness
Believing in planet Earth.
And reaching out
Bringing taking hands
People sometimes look at those with developmental challenges and assume they have no capabilities to even understand spiritual realms much less be in harmony with them. I often find myself in awe at how spiritually attuned Cody is. I don’t just speak strictly in terms of religion, but how connected he seems to be with the entire universe around him.
I see evidence of Cody’s spirituality in many different ways and at different times. Not only because he can say The Lord’s Prayer and The Apostle’s Creed without hesitation or flaw, and not just because of his own heartfelt prayers he says at bedtime—each night with different assertions of thanks and praise, and appeals for the needs of loved ones to be granted, which he does with amazing eloquence and grace, and yet, with so little effort. But this resilient spirituality of his seems to manifest itself in ways that has at times left me in great wonder.
I shall never forget when Cody was 12 and my sister, who had been ill for some time, passed away. Cody had been at his grandmother’s house. Upon leaving my sister’s home we went to pick him up. On our way home Bill and I had gathered the courage to tell him the unhappy news. Bill had no more than mentioned that we had just come from Aunt Becky’s house when Cody said with sad resolve, “She died.” There was no way anyone could have told him previously. No one at his grandmother’s house knew of her passing until we arrived to pick him up. And he was well out of ear shot when I had informed his grandmother and another aunt who was there at the time.
A couple of years before, we had been visiting my parents and went for a walk around their farm. Their land consisted of 40 acres, two-thirds of which was pasture land and the remaining third was wooded. We decided to walk through the woods to see if we could find any new plant life we hadn’t noticed before. There was a spot where there was a small clearing amongst the trees. Out of the blue, Cody said, “Here’s where Mommy and Bill and Cody’s new, blue house will be.” There had been no discussion of any such plan. The thought had not crossed our minds … until then. But we had to consider the feasibility of it.
Bill had been working for a contractor who was struggling financially. He was just about to be laid off from work. I thought there would be no way we could build a house at this time in our lives. And would my parents even agree?
We decided to go through with the proceedings. When it all worked out, my parents not only agreed, but the final paychecks Bill received from the contractor he worked for was from the construction loan to build our house. In the meantime he was able to secure another job. To Cody, this all seemed like a natural flow of events. To us, it was a thousand miracles that it ever happened. That was 15 years ago and we have lived here ever since.
There are times when I now question if Cody’s spiritual gifts are appearing in the guise of his imagination. He likes to write. While the sentence structure of his writing seems somewhat jumbled in some of his work, other examples of his work resemble works of prose that reflect the same kind of brilliant imagery you might read in the works of Czeslaw Milosz. I ponder how he thinks of these things. His expansion of the story of “The Ugly Duckling” is a prime example. In Cody’s version the ugly duckling turned into a swan that turned into a fish that turned into an eagle and flew away into the sky. It is almost a parallel with Native American legends and spiritual parables I have read. We have Native American heritage and so it causes me to consider the possibilities of a link between his creativity and the spiritual awareness that has come from our ancestors. Could it be?
His most recent story is about a coyote that waits for him at his Aunt Carolyn’s house. They are friends and they share many things with each other. Here again, is a picturesque likeness of the same spiritual connection that Native Americans of both past and present have with all of creation.
As I sat down to write today, I couldn't help but give voice to a cacophony of fears that siblings of adults with autism share. I share this list with you not to frighten or depress you, but to stand in solidarity with you, to tell you that you are not alone in your fears. I write to you in hopes that, by not keeping these fears secret, we can diminish some of their paralyzing power. I also share this list because next week I'll be attending a gathering with local siblings for the first time, and I want to prepare myself to be present to them, to their stories and their relationships.
Every sibling fears that there won't be a place for their brother or sister in the “adult” world. Every sibling listens to the latest news on healthcare or Medicaid funding and knows that it will have a direct impact on their loved ones. Every sibling is grateful for those who speak out at budget hearings and local advocacy groups, those who try to personalize the impersonal numbers, who communicate the needs of their families to senators and delegates. (What do Waiver slots translate to? They translate to parents and siblings being able to fall asleep at night.)
Every sibling (and every parent, for that matter) fears that, at some point, they won't be able to take care of their brother or sister, and will need to entrust that responsibility to another. But every sibling also fears that they might be the one to step up and give daily care. Every sibling takes pause at the thought of having children themselves, knowing that their brother or sister's care may one day become their full-time role.
Every sibling fears that they're not doing enough for their brother or sister. They fear that they don't live close enough to really be a part of their sibling's life … and if they do live close by, they still fear that they're not giving enough of their time and their heart. Siblings try so hard to strike the balance between giving their brother or sister a sense of relationship, of connection, while simultaneously respecting their sibling's need for time alone. Siblings are never quite sure they've got this balance right.
Every sibling fears that their brother or sister won't have the things they long for: Real friends, a school where they can learn and engage fully, a love relationship, fulfilling work, greater independence, a safe, comfortable home to call their very own … in other words, a shot at the things that so many of us take for granted each day.
Every sibling fears the sense of anger that can well up within. Anger for the times when their sibling's behavior is self-destructive, other-destructive. Anger for the instances when they can't communicate, when autism seems to divide them from their brother or sister. Anger for the small injustices of every day, and for the larger injustices that can frame their sibling's lives.
And most of all, every sibling fears that their brother or sister doesn't know how much they are loved.
These fears are real for me, and for other siblings of individuals with autism and special needs. However, I've come to believe that the last one, at least, is unfounded. As siblings, we will face the hard realities of caregiving. Time and time again, we will come up against a society that does not fully welcome and include our brothers and sisters, and all adults with autism.
But the fear of your sibling not knowing your love? Nope. Not going to happen. Real love is palpable. Real love keeps showing up for another person. Real love cuts through the difficulties of the everyday and offers solid ground in a quicksand world.
Even if your sibling can't speak to you or hear you … even if he or she may not say the words I love you … I want you to know that what you do out of love for them always counts. It always makes a difference. Today, I want you to know that they know, and keep your love alive.
For the past few years I have been thinking more and more about what type of work I want to pursue as a writer. I was still somewhat on the fence by the time I started college, but I am learning from my college courses that there are many paths I can take to utilize my writing skills and make a living for myself.
After I graduate from college, I will conduct a job search for writing positions for newspapers and magazines and apply. I am now more familiar with this process since securing my position with Autism After 16, and I feel more confident in my ability to handle the application process. I will, however, need to practice the interview process as I am sure that some interviews will be required of me. My parents will help me, and I understand that there are agencies that can help train me. I will look into this after I graduate. I hope to pick up multiple writing assignments on top of what I am already contributing to this site.
There are many types of publications I would like to work for because I have many different interests. I would like to work for newspapers and magazines because I think there is something intriguing about working in a traditional medium that has been around for ages, especially since it is actually changing all the time. Many newspapers and magazines currently have websites where they publish much of the same content that their physical forms have, and I feel that more people visit these websites than read their physical counterparts. In addition, I believe that as I gain experience with these organizations, I might receive more prestigious assignments such as writing news stories or have a regular column of my own.
I could also choose to pursue other routes as a freelance writer and take on technical and advertising projects. I might end up writing packaging instructions for manufacturers, professional biographies for notable individuals, press releases for different products and services that are being presented to the public for the first time, and other such written material. Writing these types of assignments may help supplement my income.
I am also interested in writing short stories, novels, children’s books, and other creative projects. Another genre that I have always enjoyed and have had some experience writing is poetry. I would love to see my work published one day. However, I understand that this process could take a long time to produce any lasting success or monetary results. One of my personal heroes, Theodore “Dr. Seuss” Geisel, was rejected by 27 different publishers before someone agreed to publish his first book. I know that I will need a steady income in order to live, so I if I do decide to take on larger projects like a book series or novel, I will have to do other types of writing as well.
I feel that I have a good grasp of the basics of writing, and the knowledge about different styles of writing that I have learned about in college has helped me to refine my skills. I feel that I could make a good living through writing, but I am still unsure of what twists and turns my career path will take. I believe that if I keep an open mind and attempt to do as much as I can in all the different areas of writing, I will be able to make a very good living doing what I love. I want to make the most of the opportunities that come my way, and I feel these opportunities are limitless.
Growing up, I was always the weird kid. My mother thought I was colorblind because of how I dressed. I could describe the ecosystem of the Amazon rainforest in detail by the age of three, and everyone who met me either loved me or hated me. It wasn’t until I started having real trouble in school that I was diagnosed with ADHD in Grade 6 (a diagnosis I now doubt I really fall under), because no one around me knew what autism was. If they had, I’m sure I would have been one of those kids who got dragged to a pediatrician during my toddling years, while the adults all moan and cry about what could be “wrong” with me. My mother never thought anything was wrong, so of course I was never brought to a doctor.
There are advantages and disadvantages to getting a late-in-life diagnosis (if 19 even counts as “late”). I was able to grow up “normally,” in the sense that I was never labeled, separated, or pathologized as a child. I was just me. But on the other hand, I probably would have had a far easier time of it if I had know why I was so different. And maybe all those teachers and dentists who treated me so poorly would have given me some slack.
Depending on one’s “functioning” level—though I have numerous problems with separating autistics into “high” and “low” functionality levels, but that’s a topic for another day—childhood may be manageable. I was a difficult child with pretty abnormal behaviors and needs, but I was still very child-like, and much of my behavior could be excused because of my age. Though as I got older and retained these behaviors—social blunderings, abnormal clothing, or sensory issues—I started to stand out. It’s normal for a 5-year-old to be scared by the loud sounds of a fireworks display, but it’s not normal for a 16-year-old to be scared by the loud sounds of a friend’s stereo system. Though that 5-year-old can get away with shyly running behind Mama during the traditional post-holiday, family goodbye hugs, a 16-year-old can’t really do that.
The transition to adulthood can be difficult for autistics—though I laugh as I type this because of course it is; it’s difficult for everyone. But the social role of adult is very different from the role of child, and this shift can be overwhelming to an autistic who has spent her entire life struggling to learn the complex rules that dictate how to act as a dependent minor. Everything changes. Things like body language (Is it okay to put my feet up on the bench at a restaurant?), behavior (Can I read my book at the table when I’m at a dinner party?), and other innocuous things can take on whole new meanings as an adult. There are new expectations to meet, and the world is a little less lenient when it comes to manners. Romance, for example, is extremely complex, and an area on which many autistics are left high and dry.
If these social rules are often so seemingly mandatory—even if you never have an office job, you may want to find a mate—why are there so few resources for autistic adults? So often, the discussion is of autistic children. Better special education programs, or alternatives like individualized education and early intervention therapies, are all wonderful things. But the child-centric view of autism leads to problems. The “DSM-IV” criteria that seem written for children make diagnosis sometimes difficult for adults who have learned to “adapt” over time. (This is especially the case for women, which we will explore later in a future column.) We need resources to address what happens when all these cute little children grow up. Things like getting a job, renting an apartment, and even going to the grocery store, can be unfathomably difficult for people on the spectrum. But, as with many things that don’t come naturally to us, we can learn and adapt if only we know how.
For some reason, I’ve had Cameron apply for more opportunities/programs/camps in the past year than I have in … well … his entire life. This is partially due to the fact that I’m actually processing all the emails I get about summer programs, information sessions, and what not. Because I have my Transition hat on, I’m realizing how applicable and meaningful many of these opportunities are. (It makes me wonder how many opportunities went by unnoticed or unattended to when my Transition hat was just lying in the corner.)
I recently submitted an application on Cameron’s behalf for a Youth Leadership Forum that will be held this summer. A recommendation from a teacher or employer was required as part of the application. I let Cameron decide who the recommendation should come from, and he, not surprisingly, chose his manager at his internship at Angelico Pizzeria. The recommendation came home with Cameron in an unsealed envelope. I took that as an invitation to review it myself, and it was probably the best thing I’ve ever read. Admittedly, I’ve done a little bragging in this space over the past few months about how proud I am of Cameron, but nothing I’ve written compares to what my son’s manager wrote about him. He said things like, “Some of my other employees could take an example from Cameron.” How totally awesome is that?! He also went on to use words like “polite,” “inquisitive,” and “learns new tasks easily.” I had to grab a tissue before I got to the end.
And the greatest thing of all was that the actions that Cameron was receiving accolades for were done without me being there to prompt for them. You mean he’s “polite” without me being there to ask, “What do you say, Cam?” He can learn new tasks without me breaking it down for him, or without me making an excuse for why he can’t do said task? Now I know how a momma bird feels when she sees her fledgling take flight for the first time. I can’t imagine it feeling more sensational, even if I were to sprout wings and take flight myself.
I got so excited about the application process, I wonder if I’ll be able to contain myself if Cameron is selected for the program. In addition to this one week program, Cameron is also applying for the Summer Youth Employment Program, where he has the potential to be placed in paid employment for the first time. Cameron is thrilled at the prospect of working this summer, as opposed to the dreaded Summer School. (You can dress it up with a fancy acronym like “ESY” but it still means getting on a school bus in the morning by 7:15, and that is not Cameron’s idea of how to spend a summer vacation.) Cameron understands that he has to start earning money to support his desire to learn to drive. He even appreciates the experience of the programs he applies for. As long as he sees it as a means to reach his goal of one day owning a pizza restaurant, he’s in. I wish I could take credit for all Cameron’s wonderfulness. But it feels even better knowing the credit is all his.
He had orphan eyes. For the moment, they were closed. I liked watching Sergey sleep. All the walls came down and I saw him for who he truly was—a runaway child, cold and frightened, yet too proud to ask for help.
I lay my face against the warmth of his bare chest and listened to him breathing. In love we count each other’s every breath, knowing that love and life slip away with every exhalation.
Sergey and I were not in love. Autistic people think too much and guys get horny a lot. Get it? I was, however, quite infatuated with him.
Sergey was adopted from a Russian orphanage when he was 18 years old. His accent was like perfectly chilled top-shelf vodka filling me with a warm rush. I felt flushed and dizzy whenever it tickled my eardrums.
Though technically the foreigner, Sergey had sewn more than his share of wild oats on American soil. I was hopelessly naïve. Having just begun my quest for love in the gay scene, I was in desperate need of a guiding hand … that wouldn’t try to undo my pants.
The “coming out” part was easy enough. I came home to find my father standing in the kitchen, slurping a bowl of cereal.
“Hey butthead, what you been up to this afternoon?” he asked between slurps.
“Not much really. I made out with a boy named John. Hey, are we out of milk?!”
I didn’t shed tears or give hugs. I failed to notice any weight lifted from my shoulders. I’m here! I’m queer! Where’s the milk?! Coming out was a bit underwhelming. Being out ... of milk, however, is truly cause for emotion.
OK, so I’m gay … now what? Thanks to the prancing, quick-witted fairies of “Will and Grace,” I’d come to believe that gay guys are just about the friendliest people in the world. The first item on our menu is Rude Awakening with a Side of Spirit Fingers.
I just want an intelligent, compassionate guy eager to hang on every word of my longwinded monologues, keep track of my schedule, drive me to my appointments … and model underwear for Calvin Klein on the side. C’mon, is that so much to ask for?!
Autism complicates relationships something fierce. I try to educate potential boyfriends upfront. They typically sit through my cautionary lectures in a charmed stupor, admiring my quirkiness, intelligence, and uninhibited lust for life. Every guy I see is fully convinced that they have the balls to handle autism. Several weeks later, however, my “wonderful quirks” are driving them to the verge of homicide. Some last longer than others, but they all run, hollering their goodbyes into the growing space between us, “I have balls! I can handle autism, but that’s not autism! You’re just a jerk and a freak!”
Same old song and dance. Every potential relationship is a ticking time bomb. Tick … Tick … Tick … MELTDOWN! Then I’m back where I started, confused, lonely and ashamed of my beautifully singular mind. Then I laugh. “I have balls,” I mutter to myself. C’mon now, is he really much of a loss?
Sergey was the first of my time bombs. I was so excited for our first date. Somehow, I just knew we would be together forever. We would talk for hours and form a lasting love grounded in our mutual social ostracism … and sexiness.
“So where are you taking me?” I asked eagerly, as I climbed into the passenger seat of his car.
“A drag show!” he said. “We gonna get DRUNK!” His accent was so glorious I didn’t even bother to pay attention to his words.
To Be Continued ….
I often wish I had the same memory capacity as my son. Cody can tell you how old he was if you ask him about a specific event in his life. When he was 12 his grandmother bought him a set of three cassette tapes called, “101 Children’s Songs and Rhymes.” He had them memorized from start to finish. But why can’t the rest of us do that?
There are many instances where Cody has demonstrated his abilities of recollection. He can walk down our hallway which is lined with pictures of him in different stages of his life. If I point to one and ask him how old he was in that picture he can tell me. And he’s right every time.
He was seven when we took the picture of him and Bill in front of the old white house, just before we went to our friend Erika’s wedding. He informed me that it was also the same day Bill found the big black snake beneath the mimosa tree where Cody and Bill had their picture taken.
He was three when he fell asleep at the table in front of his chicken noodle soup. He was 19 when we went to the cabin in Rhinelander, Wisconsin. We also visited Lake Superior where, in Cody’s words, the waves rolling in sounded just like the ocean at Myrtle Beach, where we went for a family reunion and stayed in a condo by the ocean. He can also tell you all the names of the family members who were there.
One time my husband, Bill, had misplaced the paperwork for a truck he was trying to sell. He needed the year he bought the pickup and he could not remember it. So, he asked Cody how old he was when we got the white truck we had affectionately named “Giddy Up Go” upon Cody’s suggestion. Cody immediately said he was 15 years old. And he was right! Later, Bill found the paperwork and the truck had indeed been purchased in the year 2002.
By the way, I had to ask him tonight what we had named the truck.
What is it about some individuals on the autism spectrum that they are often able to recall the past so much better than we who are neurotypical? There are different types of memory, and people with autism often have very detailed memories of past experiences. Cody can tell you the name of every restaurant in every state we have ever been to and what he had to eat there. At Awful Arthur’s in Roanoke, Virginia he had fish. At the Grumpy Troll in Mt. Horeb, Wisconsin he had pizza. But his favorite pizza was at Pappa’s Pizza at Tenkiller Lake in Oklahoma. Now, at Schubert’s in Mt. Horeb he had pancakes for breakfast and he liked them. But at Shoney’s in Ashville, North Carolina he had shrimp and he didn’t like his meal.
Cody remembers the name of his dentist when he was three and how he didn’t like him because he was not a good dentist and what he did hurt him. He remembers playing with a mouse on the kitchen floor when he was four, at an old house in which we once lived and how Bill became alarmed when he saw it and killed the mouse. He remembers Granddad Jackson who caught a bird in the attic when Cody was 11 and took it downstairs and set it free outside the back door. And he can tell you the sounds the “bird critter” (Cody’s words) made upon being captured.
How does Cody’s memory function? I don’t know. I only know I wish I could have half the memory he possesses!
This Valentine's Day, I'm determined to look for love in the ordinary spaces of my days. Too often, I get swept up by the idea of love, the thought of devotion—and, in doing so, I overlook the everyday manifestations of the extraordinary.
In an effort not to miss real love when I see it, I found myself holding a particular photograph in my hands and studying it intently. In the process of scanning photos for a documentary film project, I came across this 20-year-old image of my family.
The photograph's composition is a clue to the photographer: me, at elementary-school age. Looking at it now, I can see that it's off'; the house is looming large in the background, and the family is crammed into the foreground. As an adult, I can admit it's not an ideal photograph by any means. But I love it all the more for its imperfections. I love that my parents jumped into a pile of leaves with Willie and let me take their picture. You can see the rake, abandoned, near the edge of the lawn, and I love what that symbolizes: That we set aside efficiency and made room for play. I love that my parents entrusted me with their camera and gave me a chance to capture such happiness.
Of course, I run the risk of idealizing even here; though this moment is a beautiful one, I know that there were difficult moments in Willie's and my shared childhood. I know that there were times when Willie and I fought with one another, times when I thought my parents were unfair, times when Willie ran away and scared us half to death. (In fact, my first memory of my little brother is of him biting my hand during a tussle over which TV channel to watch, of me screaming in outrage.)
And, I suspect, this is true for many families. You have your gorgeous times, the times when home is a place of peace and contentment. And then you have the times when you want to throw in the towel and give up on the exasperating people that you call family. You get your birthdays, your anniversaries and Valentine's days, when you show appreciation and commitment to one another. And then you get your ordinary days, when you're lucky if you don't snap and scold or ignore one another completely.
Somehow, this photograph gives me greater insight into the paradoxical nature of family, the way we're always trying to change and stay the same, balancing the simultaneous desires to create a safe haven and fly the coop. In looking at the image, you can tell that Willie's about to wiggle out of the embrace; you can see that he's not looking at the camera or at my parents. You can see that this little boy is in a different world. But you can also see my father holding his hand, my mother cuddling him close.
My dad no longer wears aviator sunglasses, my mom no longer has a perm, and my brother is no longer a chubby-cheeked child. He has grown up, and our family dynamics have changed. Even so, there are clues to the future in the past. Though he's no longer the same impish boy, the grown-up Willie still moves out of pictures at every opportunity. Though they're no longer sporting 1980's styles, the older parents are still holding Willie, still creating a space of support for him. And ultimately, I treasure this photograph not because of all that has changed, but because of what remains.
The trees around my family may wither; time may change our bodies, our relationships, and our lives. We'll get lost and found, over and over again. Yet I also see a reason for hope, because I see a family that has left normal and gone in for something better: Love that endures through changing seasons, love amidst the dying of the leaves, still beaming bright.
A number of things have happened in the past several weeks that have me pondering the idea of what it means to “let go.” Those of us working in the field of special education are more often than not striving to impart to our students the lessons of independence, or perhaps independent interdependence! We want our young people—our children and our students—to be prepared to face the world of adulthood with as many of the tools for independent living as they can master before that magic age of 21. A system that has been all about entitlement until that age suddenly becomes about eligibility, and what was once a guarantee, at least theoretically, becomes a game of chance. I am fortunate enough to work with individuals in my special education world who commit literally countless hours above and beyond the call of duty to ensuring that these students have as many of their “ducks in a row” as possible when preparing for graduation day. Everything I do in the course of a school day is about preparing students for a successful entrance into the world of adult employment, and for most of these individuals, that employment will require supports. When I think about this, I realize that we all need support at work in one form or another, so it comes down to a matter of intensity. Many students on the autism spectrum will fall into the category of requiring very specific supports to successfully transition to the adult workplace after graduation, and those supports cost money. Surprise, surprise, right? But as the system has worked in the past, the money was there—not in vast quantities necessarily—but such that we felt that preparing our students for the adult world with support availability was a reasonable goal. They did not have to be completely independent workers; if their quest towards mastery of basic employability skills was still a work-in-progress, that was okay too. Help would be there, and after all, one of the lessons we seek to teach is how to recognize that help is needed, and how to seek out that help in an expected manner.
Reality-check, 2012. As it turns out, that help most likely will not be there. Students who have been readying themselves for a world of supported employment, a world that will not expect them to be completely independent workers just yet, are now facing a harsh new reality. Supported employment is a form of help that necessitates funding, and that funding may very well not exist in the near future. The bottom line may very well be that after years of hard work and dedication to the goal of securing as successful a future as possible for these young men and women, and countless others, it is going to be a matter of sink or swim. Too many of them are now faced with the possibility of success or failure on their own merits as they enter the world of employment following graduation without the support they had been counting on, the support that we—their parents and their teachers—have been telling them would be there. So the idea of letting go now moves into a realm not previously considered, when I realize that all that has been done may not be enough. Is there enough time left to compensate for this reality shift? In a world of entitlement where we truly appreciate the value of accentuating the positive, is there enough time to shift gears and say, “Okay kids, the party’s over—when we tell you to take these opportunities to learn from your mistakes seriously, we REALLY mean it this time!” For some it will be manageable, but many more will struggle and that reality is going to necessitate a letting go on a whole new level. As an educator, in order to be able to keep doing what I do, I will have to borrow from the “Serenity Prayer,”: Draw strength from accepting the things I cannot change, find the courage to change the things I can, and have the wisdom to know the difference. This will have to be what letting go is all about.
It has now been four months since Cody has had day rehabilitation service and finally a new provider has come to our aid! So I have been gearing up to make it work this time.
Cody’s new service tech was here for the first time on Monday. I was very encouraged that not only did he have a degree in Psychology but he also has an impressive work history in this field. Nevertheless he is young. And I could tell that he has probably not worked with many individuals who had been diagnosed with Pervasive Developmental Disorder. But I still have hope and I feel a certain responsibility to Cody and to his staff to do everything I can to make this experience enjoyable and successful for everyone involved.
So today, I took a trip to one of the local home school stores. I bought a schedule poster to give Cody and his staff a visual representation of what each Monday, Wednesday and Friday from the hours of 10:00 a m. to 2:00 p.m. will look like. This will be placed on the kitchen door to the family room which is a highly visible place. Now Cody will see it each time he walks through the living room, dining room and kitchen. Each time he looks at it he will become more familiar with his schedule. Once he grasps the concept that these are the things he will be doing each day at this time or that time, then it will be easier for him to focus on each task at hand.
He will also see when his breaks and free times are, and when he has community outings which he looks forward to very much.
I also purchased a dry erase board to place on the kitchen door as well. This gives Cody’s staff a place to leave a short note as to how Cody’s day went. When Cody sees that, he will know that his parents are working with his staff as a team and we are communicating with one another about his progress. His staff may also choose to use it as a visual aid in teaching Cody the academic skills he needs to know to have a more self-sufficient life.
I have expressed concerns in previous columns about Cody’s need to learn basic math skills. Today I bought flash cards and an addition and subtraction key board that tells you what the answer is when you press the key with the math problem which is engraved on top. I also bought a giant calculator to be used as a tool in his learning process. It’s blue … his favorite color.
Many individuals with PDD have significant communication problems. Cody is no exception. Especially when he needs to answer Where, When, What, Why and How questions. So I found a vocabulary workbook that I thought would be a good starting point for improving his communication skills.
He also has a bit of a problem with antonyms. Asking Cody, “What is the opposite of happy?” and expecting him to answer is a bit like herding cats. Here again if he does grasp the concept of the word opposite, it is not evident in his communication skills. To aid him in either understanding the meaning of opposite I found flash cards with one word on the front and the opposite on the back.
In essence, any teaching tool I could find that would give Cody a visual for these basic skills caught my attention in the store. And a great deal of it ended up in my cart as well. I also purchased needed supplies such as pencils, markers, dry erase markers of different colors and an eraser to go with them, and finally a large blue plastic bin with a cover in which to keep them organized and easy to access.
Finally, I met with Cody’s staff and showed him everything I brought home from the store to aid him in teaching my son. I asked him to tell me any other suggestions he might have. We sat for a few minutes and worked out what would be a good schedule for each day he was here. And then I made sure to allow him time at the end of each day to leave detailed notes for us as to how Cody’s day went and what they did during their time.
Then, I hung the dry erase board on the kitchen door and the finished schedule poster beneath it. Now, let the progress begin!
It's almost that time again: Time for me to venture forth to go and pick up medications for my brother. This happens approximately three times per year, and it involves a drive to the outermost reaches of the DC Metro area, in Maryland, far from New Jersey but close enough to Washington.
I've done this before, so I know how it will all play out. After arranging the pickup times with my mom, I'll travel to the doctor's house. (This doctor has a production license but lacks a shipping license for my brother's particular type of hormone therapy.) My family's pickup-and-ship method is entirely above-board and legal, but I feel a bit vulnerable each time. In fact, feel the same way I feel when I pick up medication for my husband at CVS. I've had time to consider why I feel this way, and I think it's because there's something so inherently personal about medication. There's a level of trust that needs to be there; a high level of responsibility vested in me that I want to be worthy of.
In the course of the drive, I'll turn down the various Courts and Roads of the doctor's subdivision, each one looking the same as the last. It's an hour's drive each way for me, but I remind myself that the medication's actually working. I'm happy to offer two hours of my time on a semi-regular basis toward something that helps my brother to feel and act calmer.
Once I arrive, I'll pull the car over to the side of the cul-de-sac and step out, my legs aching. Try as I may to avoid it, I usually hit traffic, and arrive later than planned. I always think that I've missed a key turn, but in reality I tend to forget how far away the house actually is, and I worry I've missed turns when I haven't gone far enough yet.
The first time I went to pick up those medications, I got an hour's worth of lost, another hour's worth of traffic, and a full heart's worth of sorrow for the guilt in my mother's voice when I called her to ask for help. I cried, and she looked for my roads on her map. They were too small, and I was too lost. I hung up, and made my way there with the help of the doctor's assistant.
Yet every other time since, my directions and my memory have sufficed, and I know that they will again. I'll ring the bell, and I'll be ushered into the house, which is cluttered but pleasant, a cool air suffusing the space. A cheery assistant will meet me, saying something like, "I talk to your mommy a lot," as though I'm about five years old. To this I will reply, "I bet." The doctor will gather the medications and hand them to me. As always, I'll check to make sure my brother's name is there. William Fischer. I will sigh with relief, because I tend to doubt this while I'm driving: That the help we need will be there, bubble-wrapped, intact.
We're done. I'll say thank you, and as the door closes behind me it will be all I can do not to keen and wail the doctor's spacious yard, beside the streaming fountain. In this instant, I know, I will miss my brother with intensity like devastation. But I will keep moving; I won't want to linger in fading light, holding vials that keep the demons of aggression (mostly) at bay.
That's why I called my mother after I'd hung up on her in frustration, on that first, disastrous trip. I will tell you now what I told her then: Mom, Mom, I love him again.
Different kinds of people do different kinds of work well. Surprise, surprise—this goes for Aspies too.
Lots of people do their best work interacting with others regularly. At the water cooler, in the hallway, in meetings. Tthat's probably why meetings are more popular—and maybe even more effective—in American corporate life than generally believed. People like day-to-day chitchat. (They may curse under their breath as dear old Arnie burns the popcorn in the breakroom again, but they'd miss him if he left permanently.)
Not all of this chitchat is, strictly speaking, productive. But it's just like when a couple leaves their kid with the babysitter and spends a night out on their own: When they come back refreshed that leaves them better able to deal with their kid some more. Likewise, “idle” chatter helps everyone get to know and like each other better so they're there for one another when they need it.
On the other hand, some people—maybe especially Aspies—do better when we can create by ourselves and then show our work when we're ready. And through trial and error (and frustration experienced by more than a few of my previous bosses and co-workers) I've found that I'm one of them.
I'll bet that pretty much every workplace in America was all abuzz earlier this week after the Super Bowl. Even folks who barely know a field goal from a home run (um, touchdown--see what I mean!) enjoy discussing the ins and outs of the great game with co-workers.
Well, I've always hard a hard time relating to the Super Bowl. (The World Series is another matter—but hey, I'm a New Yorker—used to winning baseball teams!) And while I can stand there silently while a co-worker expounds on who shouldn't have thrown what pass and whose fumbling cost their team the game, it doesn't help me work. After hearing ten reasons why the other person's talents are wasted in taking telephone surveys or helping customers find books instead of coaching football, I find it really hard to get back to my work.
And that's if I just stay in front of him and stop myself from yawning. Actually saying things like “Oh, wow! That's interesting!” “Oh, my—what happened next?” drains quite a bit more energy. So my choice is to (seem to) listen attentively to a surprise lecture, or gain a new enemy. Do the latter enough times and one thing I don't gain is another paycheck!
That's why Emily and I decided that I should create my own business, A SPLINT. Indeed, clients need pleasing—as an entrepreneur, you don't “work for yourself,” you work for whoever is willing and able to pay for your services. Sometimes quite a bit of pleasing … good performances take hours and days of work behind the scenes.
That is, self-directed work. Where somebody probably isn't going to come barging in to prove how the Toyota Prius is the car of the future, or how incompetent/brilliant/normal (hah!) the government has been. Heck, even the Jehovah's Witnesses have learned to keep their distance!
With the exception of current clients, friends and family members (isn't Caller ID great?), people contact me by leaving a voicemail or sending an email, fax or letter. I can take a minute or three to process what's going on and do any necessary research or other preparations before responding. And that makes all the difference in making people happy.
Entrepreneurship isn't for everyone. But for those of us—perhaps especially Aspies—who can better please people with a prepared personality—it can be worth a shot.
It’s that time of year again for our family—the preparation for Madison’s Individualized Educational Plan (IEP), the document that details the goals, objectives, and services she will receive through the school system for the next 12 months.
In Madison’s current placement, the meetings run with precision. Materials are sent out in advance so we can review all elements systematically, thoughtfully, and with ample time left for discussion.
I have not always been so lucky.
Although Madison’s intervention services began 15 years ago, I have been a part of IEP and other review programs for over 20 years. Madison’s older brother was medically fragile with multiple special needs. From double-digit-sized meetings for coordination of services to small hospital case management conversations, gatherings to discuss the future welfare of a child can be a land mine for the unknowing parent, I’ve learned.
“So, what does Mom think?” can be a layered, loaded question often used when new information is presented or there’s a stalemate in discussions.
First of all, although I am happy to share my opinion, I cringe at the salutation.
Yes, I am a mom.
Yes, I am, “Mom,” to my children.
But my name is Becky.
Educators and medical professionals, however, routinely address parents in this fashion. Granted, it is a quick cheat sheet of a label, reminding others of the parent’s role. Yet, we don’t share the reciprocal privilege.
Would I ever say, as I looked at these individuals, “So, what does Speech Therapist think?” or "What does Teacher think?" “What does Doctor think?”
How rude it would be to discount the person to their role.
But beyond the depersonalization—that is almost a standard and therefore, maybe not that big of a deal—the next asked question and its intent is the most revealing.
“So, what do you think, Mom? You know your child best.”
And there it is. Now my role has been linked to my responsibility. As a mom, I should know best.
As Becky the individual, however, I may not know what is best. But as Mom, my role, I should.
At least that’s the way I used to hear it, in the early days of dealing with specialists. “You know your child best” haunted me, especially when Madison’s behaviors began to escalate. And I didn’t know why she spun things. Or hand-flapped. Or lined her Fisher-Price people in straight lines. Or wouldn’t sleep. And wouldn’t stop crying.
Or wouldn’t talk.
I did not know best any more.
Perhaps another mother, a better mother, may know. But this mother, Becky Galli, did not. In fact, that is why I needed a good Individualized Educational Plan with specialists who did.
As I grew weary and frustrated with the “lets ask Mom” techniques, I decided to address the situation directly and came up a way to help others help me. Before I gave my answer, I began to ask:
How do you typically manage situations like this?
What resources did you use?
Or, more specifically:
Have you seen something like this before?
How did you respond?
What has been successful?
And then would add:
Do you think this could work for my child?
What would that look like?
Even though I felt I no longer knew best for Madison, when I used these questions I gained the information I needed to strengthen my role and make good decisions for her.
Granted, we do know our children in ways that others, professionals or not, may never know. Most often, however, we have deep experiences—not very wide ones.
By this time in their lives, our children are probably receiving specialized services. Thoughtful questioning allows professionals to show their credentials and experience.
And help us know more in the effort to know best.
Since my last column, my Grandma has passed away. She died peacefully in her sleep on Thursday, January 19. She was 87 years old. Her funeral was held a few days later, and most of the extended family and many people who were friends with her or knew her from various places came to give their condolences. It was incredible to see so many people who cared about Grandma. She was truly loved. I will miss her.
I remember the many long hours I recently spent at the hospital waiting for news about Grandma’s condition. While this was happening, I was also wondering when my computer would return from the repair shop. It had contracted a virus at precisely the worst possible time. The college semester would begin shortly, and I needed to complete the icebreaker activities in each of my classes before it began. The icebreakers are mostly ungraded activities in which I introduce myself to my other classmates and show that I understand the syllabus material for each class; they are not exactly proper schoolwork, but I feel compelled to do them anyway to show the teachers that I am indeed participating in the course. I was relieved when my laptop came back from the repair shop, as I was then able to complete the icebreakers quickly. I finished them during the days between Grandma passing away and her funeral.
After the funeral, I then had to begin doing the schoolwork in each class. For the first two days of the semester, I read through the first chapters in each of my textbooks and participated in virtual discussions. These discussions are the online equivalent of classroom discussions; all of the students answer the teacher’s questions, and then we must discuss aspects of the course material among ourselves. These portions of the class are apparently supposed to be the easy part, but I find them quite exhausting. It takes me a bit of time to complete one discussion post because all of my ideas need to make sense before I can post my thoughts, and I have to make sure that my spelling and grammar is correct. I also try to post two or three replies to people who talk to me in each discussion per day. Multiplied across five classes with one to three discussion areas each, I have found that this takes a lot of time—time I would rather use to work on essays, quizzes, exams, and other areas of my schoolwork. By the time I am done with discussions for the day, it is usually very late at night, and I feel compelled to head off to sleep.
When the discussions are out of the way, I am then able to concentrate on doing everything else that is required. These assignments bring their own challenges, but they are a welcome diversion from the continuous grind of producing discussion posts. This semester, I am finding that the quizzes are the easiest part of my coursework. They are all presented in an open-book format this year, which means that I can freely look up the answers in my textbooks It is still a bit tricky for me to find some of the correct answers, especially when under a time limit, but at least the format provides me with a bit of relief. The essays, on the other hand, are much more difficult. During my first two weeks, I have been assigned three different essays. I find essays much harder because they require more time, and I have to really put a great deal of effort into editing my own work. Once everything is sorted out, though, and the essay is complete, I feel satisfied with what I have done.
The first few weeks of this semester have actually been fairly easy, but my courses do require a lot of work to be completed in a short period of time, which always takes getting used to. However, I think I am starting to adjust and will be able to continue my schoolwork for the next few months without too many difficulties. I am looking forward to learning more useful information this semester, and I cannot wait to graduate.
Sometimes I wonder why there are some things where Cody’s abilities actually exceed that of his neurotypical peers but then there are some simple tasks that he has struggled with all of his life. Some of these answers I have learned, but others still elude me to this day.
It used to amaze me when Cody would run a fever and all of the sudden his speech became normal. It used to be something that at first, took me aback. Then every time it happened it gave me false hope. I used to think, “Oh! If he is able to communicate with others and be understood he will have a much better chance of being okay!” And then the fever would go away and his perfect communication went with it. While I was relieved his temperature was back to normal, I was broken-hearted when the communication barriers returned. But over time I learned what to expect when this seemingly strange phenomenon would manifest itself with a bout with a cold or the flu. (This is a frequently reported occurrence in children with autism, and one that researchers continue to investigate.)
Another of Cody’s characteristics that both astounds and amuses me at the same time is his sense of humor. There are times when it is very typical of most young men his age while other times it is much more child-like.
He may hear a line from a sitcom on television that would be considered adult humor and laugh until there are tears rolling down his cheeks. If I say something completely ridiculous, his typical response is to roll his eyes and say, “Mom! That’s ludicrous!” If he catches me not looking he’ll steal my soda and run into another room, laughing like a hyena all the way. But then in contrast, there are times when he may find something funny and will jump up and down while flapping his arms and hands and giggling like a mischievous six-year-old. Why is there such a huge inconsistency?
It would be logical to assume that the difference lies in the nature of the humorous event, that a different kind of humor would evoke a different response. But after years of observation I’ve come to the conclusion that the difference in responses is not based upon the difference in kinds of humor. This dissimilarity continues to be a mystery to me.
Why is it that he can sit at his computer and draw some beautiful pictures on Windows Paint or draw a peacock on an Etch-A-Sketch with ease but writing a note within the lines of ruled notebook paper is something he is still working to master? He’s been incredibly successful at the one and yet continues to struggle mightily with the other.
And it’s not just me who takes notice of these things with Cody. Other parents and families who have loved ones on the ASD spectrum report the same type of anomalies.While we have found answers to some and answers to others will be discovered in time, there are sure to be others we will never know!
While I didn't mean for my last column to foreshadow the future, it's fitting to say that Willie and I crossed a bridge this holiday season. When my husband and I went to New Jersey to visit family last month, we brought gifts for a belated Christmas celebration. Thanks to the delay, I had time to ponder a gift for Willie. I wanted something thoughtful, not mass-produced. Something unique, like him.
In the end, I decided to purchase two pieces of artwork from Justin Canha. First, I selected a “Snow White and the Seven Dwarves” illustration because it reminded me of the time when Willie unexpectedly assigned character roles to each member of our family. His casting choices were a window into his inner world; Willie was Happy (or Grumpy, depending on mood), Mom was Bashful, Dad was Doc, and me? I was Snow White, an honor I never could have anticipated.
For the second picture, I phoned Willie to ask about his favorite Disney film. With little hesitation, he replied, “’The Little Mermaid!’” That reply made my choice easy: a drawing of Ariel with Flounder and Sebastian by her side. The two pictures arrived together, and my husband and I marveled at the level of detail in each one.
When the time came to give presents, however, I felt nervous; what if Willie didn't enjoy the drawings? Would high-definition TV make the illustrations seem quaint or uninteresting?
Once we'd assembled in the family room with my parents, I called to Willie, saying, “I have a surprise for you!” His eyebrows raised; he seemed curious. With the drawings behind my back, I turned the gift-giving into a game, quizzing my brother.
“Willie,” I said, “What's the movie with Happy, Grumpy, and Doc in it?”
“’Snow White and the Seven Dwarves!’” he answered. His tone of voice implied, “That one was too easy!”
“Well, since you liked that movie, I hope you'll like this!” With that, I pulled out the framed drawing. My parents clapped, and Willie laughed. He held the picture close, examining all the details. I asked him to name the characters for me, and he did, but then he turned to go.
“Wait, Will! We have another one for you.” He paused, his stance impatient, but still attentive. “Do you remember when I asked you what your favorite Disney movie was? Do you remember what movie you said?”
He paused, brow furrowing in concentration. “That's ... that's ... “The Little Mermaid!” he said, after a moment's deliberation.
“Yes! Perfect,” I said. “And that's why I got you ... this one!” I pulled out the second drawing with a flourish.
And I'll never forget the look that moved across his face. His features shifted into an expression I couldn't remember seeing before: a crooked smile, a softening of the eyes. It was fleeting, but it was so wonderful and unexpected that I gasped to see it. “You like it!” I said. And Willie said, “Yes. I like it.” And with that, he dashed out, pictures in hand, as is his way.
I've had some time to ponder that expression since, and the closest I can come to categorizing it is to say that he was touched.
When I think about Willie's life, I sometimes forget that his growth does not happen in a vacuum, that we become ourselves in relationship. Whether we're on the spectrum or not, our capacity for change is, in some ways, dependent upon who walks beside us on our journey. What my parents and I do, what Willie's teachers and classmates do … all of it matters, in more ways than we know.
As Dr. Darold Treffert said in our recent interview: “In watching caregivers over the last few decades, I've witnessed the power of care and love and concern ... I've learned as much about that as about synapses and neurons.” He spoke with conviction, as though what he'd witnessed in families and support teams was more miraculous than all the amazing things he's discovered about the human brain. And having witnessed the mystery of the fleeting expression on Willie's face, I can't help but agree.
I have spent the better part of 40-something years trying to figure out where and how exactly I “fit in” in the grand scheme of things. Finally, obviously, miraculously, the questions were answered. Asperger’s syndrome. Of late, I have spent a significant amount of time pondering the implications of the proposed revisions to the “Diagnostics and Statistical Manual of Mental Disorders (DSM).” Because my personal life as both an Aspie and an Autism Mom intertwine so seamlessly with my professional life as a special education teacher, I find myself pondering the implications of the proposed revisions for my students—past and present—as well. I consider myself blessed to have found my niche, professionally speaking. Coming to this place in my life took nearly as long as figuring out that autism makes everything make sense. But … there are more than a handful of young adults in my life, both personally and professionally, with whom I share this label. While the portion of my brain that doesn’t have the RAM space to get too caught up in whether I would fit into the revisionist tale of the autism spectrum (I will) wants to put the whole mess on a shelf and leave it there for the foreseeable future, there’s more to it than that. There has to be, or I cannot do my job as a mom or a teacher.
My daughter and I discussed the issue not too long ago, and she quite gleefully announced, “Yay, so I’m autistic!” This was a light-hearted exchange and she repeated the proclamation to her fellow-spectrumite brother (who grumbled and walked away). Will they fit into the revised criteria? Will they need to fit into the revised criteria? I am less sure of the answer to the latter question than the former. I don’t know what their futures hold, so I can’t say for sure whether they will need services or accommodations in the workplace as adults. The same holds true for many of my students. What I am reasonably sure of is that with the labels “autism” or “Asperger’s syndrome” or “PDD-NOS” come a certain level of understanding both on a personal and societal level. We hear those words and an image forms of what issues may be in play for an individual. True, those images may be stereotypical at times. All things considered, though, I would much rather the young adults in my life get the benefit of the doubt—that in the future, others in their lives know to scratch beneath the surface. Dig just a tad deeper to get past some of the baggage that comes along with autism and get to the beauty that comes along with autism. It is worth searching for.
When I first began teaching self-advocacy skills to adolescents and young adults with autism spectrum disabilities, it was with an implied understanding that these young people were always going to be autistic. Effective self-advocacy necessitates self-awareness. Before the committee that will ultimately make the decisions as to who does and does not qualify as autistic renders its final judgments, I would hope they consider carefully the question of what do we do about those individuals who are learning now who they are, how they are “wired,” what works and what doesn’t and how they can best proceed into the wonderful world of adulthood. If we teachers and parents are doing our jobs to the best of our ability, a sizeable number of those young people may just get to the point where their autism is a source of pride, not shame. They may just get to the point where knowing that autism is what makes them tick is how they are able to keep the clock running on time. I for one have no desire to go back to a time where I am on the outside looking in.
The more time that passes, the more I truly appreciate that “suffering” is not a word I equate with autism anymore, and the only way I made it to that place in my head, and in my heart, was through an accurate and extensive diagnostic process. Ignorance is what breeds suffering. Revising the diagnostic criteria in a manner that excludes those who under optimal circumstances could be considered to be on the “high-functioning” end of things may serve to reduce our numbers, but what then becomes of those left behind? We have spent so much time, energy and love figuring out what works and what doesn’t in the world of autism. As a mom, a teacher, and an Aspie I am grateful to have had that wisdom to draw on. I can only hope that the students in my future will come to me as fully able to learn what it means to be self-aware, to be your own best advocate, as the students I am blessed with today. After all, thanks to the label that answered more questions than I ever dreamed possible, I found the path forward. I hope that those updating the “DSM” realize that the terms “Autism,” “Asperger’s” and “PDD” are more than just a diagnostic label. They are, at the very core, an answer … an identity.
I’m proud to say that with January almost in the books, so far I’ve managed to stick with my New Year’s Resolutions. I’ve signed myself up for a handful of information sessions about various acronym-named services. I’ve also submitted applications for Cameron’s participation in a summer work program and a youth leadership forum. As I busy myself with these tasks, it dawns on me that I’m doing these things for Cameron, but not with him. Just as he participates in Transition planning during IEP meetings, he should also participate in my Transition flurries that happen with regularity these days. And let me just add a resolution to the list, while I’m at it: During this year’s IEP meeting, I will not talk as though Cameron is not in the room. I will make sure he is an active participant in the meeting, and that he chimes in on the proceedings. To make amends for my recent oversight, I decided to get Cameron’s perspective on this Transition journey by interviewing him. (This gave me the opportunity to ask Cameron to help me with my homework, for a change.) The following is a “transcript” of our conversation:
Julie: Cameron, tell me what you think are the most important things to do to prepare for getting out of high school and becoming an adult. Tell me what you think you are working on that will help with your independence.
Cameron: Well, um, I think it’s like being prepared.
Julie: Okay. And how are you getting prepared?
Cameron: You know like having my clothes set out in the morning, and lunch ready, and keeping an eye out for the bus or train. Something like that.
Julie: What do you look forward to when you finish school?
Cameron: Learning about the restaurant business. You know, owning the restaurant or working as an employee to get my own restaurant.
Julie: Is there anything you’re doing now that’s helping you prepare for that?
Cameron: Well (my boss at my internship), well, he seems a little bit more busy than the employees. Sometimes he’s there and sometimes he’s not. It’s probably because he’s out getting like the drinks and the food, the supplies they need to make the food.
Julie: So you’ve been watching how he works in the restaurant?
Cameron: Yes, and sometimes he’s working just like the employees. Like he’s at the cash register.
Julie: And what you see him doing, that looks like fun to you, to be able to do that one day?
Cameron: Yes. Pretty much.
Julie: So … the summer camp and the thing we’re doing on the Tuesdays when you go down to meet with your mentor, do you find that those activities are useful in preparing you for the real world, so to speak?
Cameron: Pretty much.
Julie: And what do you find you get out of those activities?
Cameron: Advice and memorize.
Julie: Advice and memorize?
Cameron: I’m not so sure
Julie: Advice is good. But what are you memorizing?
Cameron: Well, you know, stuff I need to know. I’m not sure.
Julie: How do you think it’s going to be to live on your own? Are you looking forward to having your own apartment, or are you comfortable just hanging out in the attic?
Cameron: Well maybe living alone isn’t a bad idea, but it might be a bit hard at first.
Julie: What do you think will be hard?
Cameron: Well you know, taking care of yourself for awhile and you know, like, always getting yourself ready.
Julie: But you do that now. I don’t help you get ready.
Julie: Do you think it will be lonely living on your own?
Cameron: Yeah well, living alone sometimes.
Julie: What could you do to not be lonely when you’re living in your own apartment?
Cameron: Hang out with my friends and family. Or chat with them.
Julie: What’s difficult for you when it comes to having friendships? What’s the most difficult thing about friendships?
Cameron: I don’t know, maybe not being too annoyed. And not annoying them.
Julie: How do you like having your own bank account?
Cameron: Pretty handy. But uh, it’s not going to be easy without you because I don’t know where to get the money from or how to get the money. Besides my job.
Julie: Well that’s the big challenge, to get a job that will pay you enough money so you can pay for the things you need to pay for.
Julie: But that’s not something you really need to worry about now. You still have a while to figure that out.
Julie: What are you most looking forward to?
Cameron: In what?
Julie: Are you looking forward to getting your driver’s license? Are you looking forward to moving out? Are you looking forward to having a job? Are you looking forward to being finished with school?
Cameron: I think it’s school.
Julie: So if you had your choice … when you finish school would you like to go straight to work in a restaurant, or would you rather go to some more schooling to learn more about what you’ll need for restaurant work?
Cameron: I think maybe just a little more school, just in case. Like college or something.
I learned several things from this conversation:
A pitiful drag queen was butchering “Cabaret” across the bar—her voice was about as smooth as her upper lip. Pulsating lights burned into my retinas. A sweaty crowd of gyrating men pressed uncomfortably close to me. Hey, who the hell just grabbed my crotch? I thought. Using some powerful form of Jedi mind trickery, my date for the evening managed to talk me into dressing up. I was wearing no less than three Italian designers, but stubbornly refused to remove my thrift store stocking cap. Sweaty and panic stricken, I frantically searched for an exit. My senses were frying like strips of bacon and a meltdown was imminent. Gay bars are NOT autism friendly.
Follow your heart—what a crappy piece of advice! I followed my heart and ended up on the dance floor surrounded by leather clad strangers rhythmically humping each other’s legs to the music of Lady Gaga like a pack of terriers in heat. Love can make you do crazy things. The storybooks forget to mention that love is only a feeling ... and it’s not always the right feeling.
I never believed in romance. I came to the conclusion that love—that warm, electric rush that excites the senses and baffles the mind—was not something I was capable of feeling. After finally receiving a diagnosis of autism spectrum disorder, I thought I had found an explanation for my troubling emotional deficit. A few months later I found myself both terrified and overjoyed to discover that I can experience romantic feelings … but I like dudes.
Since this long overdue realization, I seem to be falling in and out of love on a biweekly basis. I’ve finally hit puberty … at 25 years old! Talk about an emotional rollercoaster! Relationships had always been cold and logical. Sex was just a means to an end—I was only meeting a basic biological need. Now everything honest and pure and frighteningly fragile within me is being exposed on a daily basis. I’ve never felt so vulnerable, so human. I’ve never been so damned lost!
If there is one thing I’ve learned, it’s that love makes you stupid! Cold rationality may be empty, but love is downright dangerous. Love conquers all … ability to think clearly. My autistic mind struggles to analyze and systematically understand the difference between infatuation, lust, and love. I can’t make sense of it. My ever-reliable logic has finally betrayed me.
To make matters worse, gay culture is confusing as hell! I must now learn to understand and properly respond to a whole new set of social rules. Gay men tend to be about as subtle as, well, autistic men. While I find unambiguous language refreshing, I’m nevertheless perplexed, having spent years learning the art of restraint:
Random Guy: Hey, you’re hot. Wanna have sex?
Me: Um … I’m Scotty. It’s … nice to meet you?
Random Guy: Yeah, we can skip all that.
Me: Really? Wait, what?! Who says?
Random Guy: You a top or a bottom?
Me: I’m not interested in politics.
Random Guy: You got a condom?
Me: Huh? Can’t we go get ice cream or something?!
Of course, not all gay men are so brutally frank. Some are very sweet and respectful—those are the ones to watch out for! Gay, straight, or indecisive, men are NOT like women. They like sex. They like food. They may like to watch “E: True Hollywood Story,” but that doesn’t necessarily mean they want to talk about their feelings. If you meet a nice gay guy at the bar who wants to take things slow, sign both of you up for a cooking class, and discuss dreams of adopting Nicaraguan orphans, BE VERY CAREFUL! Sure, you may have found “the one.” Anything is possible. He may truly yearn for the pitter patter of little Nicaraguan feet, but he will probably rip your heart out, casually fry it up while watching “The Food Network,” and hand feed it to those hungry orphans before he actually considers signing adoption papers.
Fresh out of the closet and I’m already a cynic. Well, I’m a fast learner. As jaded as I may seem, I’m still a hopeless romantic. People are funny—until you can learn to truly love yourself, you will always want what you can’t have and don’t need. Pride and insecurity will drive you to the ends of the earth looking for love, when all along it is right in front of your face.
So how did I end up broken-hearted in Versace on the crowded dance floor of gay bar learning one of life’s hardest lessons? Well, it all started with a gorgeous Russian guy who said that I was different. Yeah, like I didn’t already know that …
To Be Continued…
In this life of hustle, bustle and organized chaos, it is easy for Cody to become anxious and frustrated. A trip to the city means the noise of many cars and big trucks, honking horns, loud speakers, and many people talking all at once. For an individual with hypersensitive hearing, this makes for an outing filled with angst. Cody almost seems to take on the appearance on someone who has an invisible pillow being held over his face. But there is one sure thing that can alleviate Cody’s disquieted moods and that is music.
Cody’s love for music stems from the time he was an infant. Like many mothers from the beginning of time who have sung to their babies, I sang to mine. Cody was less than pleased with the standard lullabies, though. I was attempting to quiet him one day during a dreadful teething phase and was at a loss as to how to do it. A theme song to a program on television began to play. It was the song, “My Little Runaway” by Del Shannon. Grasping at straws, I began to sing along with it. Low and behold, it worked. His crying stopped and soon he was sound asleep.
Music has also played a role as a teaching tool for many people. Singer/songwriter Mel Tillis used it to overcome stuttering. Singer/songwriter Roy Clark cannot read notes on a score but plays and sings perfectly by ear. For Cody we have used it to teach him about the sinking of the Bismark through the song, “Sink the Bismark” sang by Johnny Horton.
Cody also learned that a pirogue is a small, flat-bottom boat made from a single log that was used in the swamps, from Johnny Horton’s song, “I Got a Hole in My Pirogue.” This song caused a bit of confusion one day when Cody went to school and sang the song to his sixth grade teacher. She was a bright young woman, but was not accustomed to certain terms used by people of the deep south swamplands. She called us and said a conference was needed to discuss some inappropriate language that Cody was using. Upon sitting down to confer with her about the matter she told us that Cody had been singing a song that stated, "I’ve got a hole in my pirogue and I can’t get it in." She said she didn’t know if this was some risqué music he heard on TV or what but it concerned her a great deal. I nearly bit a hole through my lip to keep from laughing. We explained what a pirogue was to her and she immediately turned every shade of pink, red and purple on the spectrum and then began to apologize profusely.
Today there is a broad range in Cody’s taste in music. Country and Western, Classic Rock and Roll, Acoustic Easy Listening, Blues and Gospel are among his favorites. When he is in an uneasy state, simply putting on some music can make the invisible pillow disappear and Cody’s appearance visibly changes to someone who becomes calm and untroubled.
In recent years, music therapy for individuals with ASD has risen to the forefront of autism news. Not only is it effective for many individuals in the de-escalation process but it raises self-awareness, focus and the level of attention, overall. I can attest to the fact that all of the above is true for my son. He becomes quiet and composed. Performing tasks becomes more manageable. He often likes to write while he listens to music. His sentences are structured and his thought processes are clear in the things he writes. And when he talks, his enunciation of words becomes sharp and his tone of voice is void of the forced speech that is often present in situations where that level of tranquility is missing.
Certain performers have more of an effect on Cody’s state of mind than others. Ray LaMontagne, Colin James, Eric Clapton and Ben Harper are among those who can bring out a thoughtful state of mind in my son. While Josh Turner, Willie Nelson, Johnny Cash and Waylon Jennings all bring out his fun-loving side. Elvis Presley, B.B. King and Mel Carter are among those who can truly make Cody’s love for music evident to all.
Gospel and Blues seem to have the same effect on Cody as it does for many of us. That is to say that Cody is extraordinarily attuned to his spirituality, in spite of the fact that there are many who might believe this to be a thing he could not possibly know how to achieve. Gospel and Blues bring that part of him to the surface. This is where it is plain to see a kind of heart-filled soulfulness come forth, that resonates from the depths of his inner being. He becomes quietly reflective at this point. A stillness sets over him. It’s like he becomes absorbed by the song and all is well with his soul.
My husband and I will be traveling home to New Jersey to visit my family soon, and along with the anticipation and excitement, I feel a sense of fear. I ask myself the same questions I always ask after a long period of time has passed since I've seen my brother: Will he still relate to me? Will it matter to him that I'm there? Will my presence help him to relax, or cause undue stress?
These fears are unfounded, because Willie is always himself when we arrive; that is, always happy to see us, but not likely to be effusive. He’s always ready to put my husband and me at a place of honor in his daily prayers, but not likely to want to converse for more than a few minutes. That's Willie.
Coming home is also an experience of living my fears. Invariably, Willie will have a hard time one day, and he'll lash out at me or my mom or dad. He'll feel awful afterward, and so will I. But somehow, against the odds, we will carry on. And when I start to feel anxious at the prospect, the phrase, “Let's cross that bridge when we come to it,” is tremendously helpful for me. It puts me back in perspective, back into the present rather than the imagined, feared future.
“Crossing the bridge when we come to it” means that I won't imagine catastrophe. It means that I'll meet my brother where he is, rather than where I think he “should” be. It means that I'll resist my own tendency to put too much trust in words as expressions of love, and choose to trust our shared times together instead. I'll accept those experiences as Willie's primary way of showing that he cares.
What will that kind of acceptance look like? Doing puzzles together, playing ping-pong in the basement, and going for long walks where he'll inevitably run ahead on his own. It will likely mean taking precautions, and making sure that Willie has time and space to cool off, be alone, and follow his own routine. Though I'll prioritize spending time together, I'll also honor his need to do things in his time, in his way.
Most of all, I'll picture the kind of bridge we might come to, if we're able to simply love and accept one another as we are. Perhaps a bridge like the one pictured here, one that I discovered on a rambling walk through rural Virginia this fall. I was following a dirt road past a series of farmhouses, and I stopped to watch a small stream run by. The stream wound its way through the field, and at one point grew wide enough to require the wooden bridge that covered it.
As I framed the shot, I remember thinking, This is such a metaphor for how I relate to Willie. Relating to someone on the autism spectrum with fairly severe behavioral challenges is akin to walking through an overgrown field, where there are no paths to speak of. It's a confusing journey, one that can feel foreign and frightening at times.
But there's a flip side, too, because though there are no paths to be found, there are wildflowers. Though there are no markers, there is sunlight glancing off the grass. Navigating this journey, this relationship, may be a difficult experience, but it is also a beautiful one.
It's only today that I notice: Given the angle at which I took the picture, you can't see the gap where the creek runs beneath the bridge. The divide is lost in green grass, in flowers, in growth. And that's my dream for my relationship with my brother—that one day, whatever divides us will seem insignificant compared to what unites us.
One bone of contention between Aspies and NTs is that Aspies most often call something by its precise name and sometimes don't even understand why it upsets some people.
To Aspies, people talk so we can exchange facts and opinions. How we feel about each other generally doesn't matter much to us when we're conversing.
We Aspies care quite a bit about how we word things … so as to be as precise as possible. For example, if someone were to say “I was feeling really nauseous … ” we might even interrupt and say “No, you were feeling really nauseated. It was your own undercooked chicken that was actually nauseous.”
(Meanwhile she's thinking to herself: And in just a moment you're going to become nauseated when I give you one right in the breadbasket! But that's another story.)
Sometimes we have difficulty seeing the forest for the trees. We're so careful about getting the dictionary definition right that we totally tick off people.
Conversations transmit feelings. And sometimes that's their most important function. So when correcting somebody—especially but not only in front of others—we need to think for a moment about just what we're correcting. Obviously, if it's something like:
“Hmmm … how long should I boil this three-minute egg? I know—four minutes!”
Then go ahead and chime in:
“Have you considered three minutes instead? That way you can start enjoying your delicious egg a minute sooner.”
This approach sounds good to many people, because (1) you ask a question instead of making a flat statement and (2) you mention how doing it the right way is in the other person's interest.
On the other hand, for something more like:
“Hmmm … I have cream, eggshell and ivory shoes I can wear on Memorial Day. I think I'll wear the ivory to show my solidarity with the elephants!”
Do they really need your input? I'm guessing not.
Meanwhile, certain issues of wording are very important because they can become self-fulfilling prophecies. Take the economy. (“Please!”) When you hear that we might go into a recession, what's the smart thing to do? If you're a consumer, buy less and save more, in case you or someone else in your family loses a job. If you're a business, hire fewer workers (maybe even lay some off) and invest less, because you don't need that much productive capacity when there's going to be less demand for what you sell.
And why is there less demand? Because consumers are buying less and saving more because they're afraid of losing their jobs. And why are they afraid of job losses? Because businesses are cutting back on workers and other forms of investment, including buying from other firms that employ people, because they're afraid of lower demand.
So if, say, a government official announces that we're heading into a recession, this can actually help cause it to happen if it hasn't taken place already. (That's an important reason why the government is slow to declare a recession, by the way.)
And the word “depression” (for the economy) is even worse, because it reminds people of the Great Depression of the 1930s. Indeed, the very fact that we've avoided using the term “depression” since then makes people ever more sensitive to hearing it now.
During the late 1970s we experienced a serious recession (and also some inflation), and economic adviser Alfred Kahn warned that we may experience a “deep depression.” President Jimmy Carter, understandably, got upset and asked him not to use the D word anymore. So instead, Kahn said we may experience “the worst banana in 45 years.” Everyone, of course, knew what he was really talking about. But the difference may have helped. (It certainly didn't hurt in this case!)
In a nutshell, feelings sometimes drive facts. So let's pay more attention to our words. It's one thing to mean good tidings, and quite another to convey them.
As of this writing, my Grandma is currently staying in a hospital. My mother received word that Grandma fell very ill, and she had been taken to the hospital for treatment. Her condition has gone up and down over the past few days, and the family believes she is on the verge of passing away. Therefore, I have been thinking about what she has meant to me over the years. I cannot imagine what life might be like without her, and I am sure that her passing will leave behind a void that can never be refilled.
Grandma was one of my favorite relatives growing up. I always enjoyed it when one of my family’s trips involved traveling to Grandma’s farm. It was a refreshing change from what I was accustomed to, even though it was only a short distance away from my house in a small village. The atmosphere of the farm harkened back to a time before I was born. In the house next to the barn, the television in the living room had only four or five clear channels, the only telephone in the house was an old rotary-dial model, and the noise on the farm was mostly at a pastoral level, broken only by the sounds of tractors and other machinery and the bleating of sheep. The television was eventually supplemented with a satellite dish which provided more channels to watch, and the sheep passed away, but other than these details, little else changed over the years.
Grandma herself is one of the kindest people I have ever known. She always greeted me warmly and made sure that my cousins and I had plenty of things to keep us busy. Grandma treated all of her grandchildren the same and loved us all equally. She let us go on hayrides around the farm and took us out in the garden with her. She also had my mother, aunts, and uncles perform a variety of chores on the farm including baling hay, growing pumpkins for sale on Halloween, and shearing the sheep for their wool. As my cousins grew older, they were charged with performing many of the same chores that their parents had done before. They have done so admirably and seem to greatly enjoy doing them. Grandma carried on my grandfather’s philosophy of hard work which produced many benefits for the family, a discipline which I have always appreciated.
In recent years, Grandma’s mind has deteriorated to a great extent. She was diagnosed with Alzheimer’s disease a few years back, and this has severely affected her quality of life. My family first noticed the effects of her altered mind long before the diagnosis. When the family learned she had Alzheimer’s, my parents and relatives took precautions to ensure that she had a safe lifestyle. They hired a person to be with my Grandma for part of her day and then one member of the family would come to be with her switching with other members in alternating shifts. She became combative to a small extent and often complained about how the family was controlling her life too much, but we all knew that it was for the sake of her health that we were doing these things..
After she became more ill, it became too much for the rest of the family to keep Grandma comfortably housed on the farm. It was then decided that she would be taken to a nursing home where she would be able to live out the remainder of her life in comfort. We visited her when possible. It was good to see her every time I was able to do so, but her mind had clearly affected her life to the point that she often did not recognize me from our previous visits, even if they were only a short time apart. She mostly kept to herself during our visits, but she always seemed happy to have people who cared about her being with her and taking her away from her normal routine for a little while.
I have loved Grandma for many years. Along with the rest of the family, I have seen her condition deteriorate. But I still love her regardless of whether or not she remembers me on a given day. I hope she will be able to overcome her current circumstances while she is in the hospital, but if the time has come for her to pass away, I hope she will be able to do so without any pain. Regardless of how she fares, I will always retain my memories of the happy times we had together.
There is a common misconception among the neurotypical population that people with ASD do not, or cannot form bonds with others. But they can and they do.
Cody has people in his life with whom he is extremely close. His great-grandmother, or “Grammy” as he likes to call her, is one of them. It began from the time he was born and since then, it has only grown in strength and intensity.
Cody and Grammy have a standing date each Tuesday. During their time together they start by having lunch at a restaurant. Usually Cody’s Grandma Jo, his Aunt Carolyn, Aunt Judy and sometimes Uncle Zenith, join them for this part of the day. It is understood by all that Cody gets to choose the restaurant. He has his list of faves that everyone knows and so one person goes down the list naming them off while Cody either replies with an unyielding, “NOT!” or he will say, “We’ll just go there!”
It is also understood that Cody’s seat at the table is the chair next to Grammy. This is a subject that is not up for debate or negotiation.
A large appetizer is ordered before lunch is served. Grammy makes sure Cody is not only consulted about this matter but that he has the final word. When the server takes the order it is usually one who knows Cody and his cohorts on a first name basis. The servers make sure they greet Cody with happy and hardy hellos and how are yous! Most of them know his favorite menu items and they ask him if he would like the fish dinner today or perhaps the quesadillas. Grammy sits quietly by and beams her proudest smile.
During lunch, Cody enjoys everyone’s talking and laughter but when lunch is over and they return to Grammy’s house then Cody believes it is time for everyone else to be on their merry way. To him, this is his time with Grammy and his, alone!
Cody has even been known to send Aunt Carolyn to her room. Fortunately, Carolyn is good-natured about it and doesn’t mind because she knows how special the bond is between Cody and his Grammy.
When they spend their time together, Cody and Grammy often talk quietly about whatever subject Cody chooses. He likes it when he can talk to her because she makes a great effort to understand what he is trying to say. Sometimes they watch TV. Game shows are a big hit with both of them. They both cheer for the contestants from their front row seats in front of the television. Cody watches the weather channel and then gives Grammy a full report of what the coming weather will be in the days ahead. She listens to him with both attention and appreciation. And he thrives on it! Those tend to be more lively conversations. But there is also a quiet understanding between Cody and his Grammy.
Sadly, several years ago Granddad Geren, Grammy’s husband, passed away. His was the first funeral Cody ever attended. When we arrived at the funeral home for the wake, Cody promptly went to Grammy’s side and sat there the entire evening. He didn’t say much; he simply sat and held her hand. The comfort that the two of them gleaned from this was visible to all. It was nearly palpable.
I saw my son transform into a very different person for that short period of time. I think if people did not already know, they would have never have guessed that autism was or ever had been a part of his life. He was very quiet, very solemn. His behavior was very mature and very loving and comforting toward his grandmother. I sat toward the back of the chapel and watched the two of them in great wonder. It was a moment so poignant I could never forget it.
Since then, Grammy has had some health issues of her own. There have been several times when she has been hospitalized and each time Cody is always extremely anxious to talk to her just to be able to hear her voice. Grammy perks up when she hears Cody is on the phone as well!
Cody and his Grammy are kindred spirits. The kind of bond between them is a phenomenon that is rarely seen or noticed in our fast-paced world today. I think it is things like this that make me believe that sometimes ASD, for my son, has actually been a blessing in disguise.
This January, for the first time in many years, I feel no need to make a New Year's Resolution. To understand the significance of this, you have to understand that I have made New Year's Resolutions ever since I can remember. Every year, I've vowed to change my life and achieve a laundry list of goals in the process. Because I'm a determined individual, I usually succeed at effecting change. I've published books, transitioned from one role to another, and traveled thousands of miles across the globe, all thanks to past New Year's Resolutions.
So why the lack of resolution this year? Why the absence of desire? In part, at least, I think it's thanks to Autism After 16. Rather than having a specific resolution this year, I'd like to have a theme, something that informs the rest of my goals. Since we’ve already introduced 2012 as The Year of the Aspie, I'd like to introduce my take on the concept: The Year of Wishful Thinking. To quote that editorial, it's the year of, “I choose to believe it can happen.” I mean this not be naïve, but to be hope-filled. I want permission to be full of wishes again. I want to pay attention to facts and realities, yes, but I also want to let myself dream bigger. It's child-like wonder that I want to recapture in my days; it's confident trust that I want to embody.
In this theme, I have no better teacher than my family members. First, I think of my brother, Willie. Willie doesn't make a secret of the things he hopes for. When asked, Willie will tell you with confidence that he wants our family to have another dog, and he might even suggest a specific breed. In the same way, Willie used to tell me that he wanted to go back to his former high school. It was a desire that broke my heart, since he wasn't able to stay at the school due to behavioral challenges. Yet even though Willie knew it wasn't likely to happen, he didn't give up hoping. He didn't give up wishing, and I think that's part of why he's able to work at a day support program now. He knows the pain of a dream deferred, and he knows not to take a school or job for granted.
In the same way, when I felt hope was lost for Willie to live at home safely, my mother and father didn't give up wishing that Willie could still be a part of our family. They spent countless hours (and countless dollars) to help him move through his challenges, and they're still doing so today. When I look at their lives, I see that real love is always like that, always hoping, always persevering.
My family members are the reasons for my year of Wishful Thinking, but there's a bit more to the story of the picture above. Last year, I attended a seminar wherein participants created collages of images that spoke to them. At the end of the day, I kept just a small corner of the larger whole, the part that was most significant for me. In this part of the collage, I pasted a background with the words “Wishful Thinking” next to two pictures: one of me a toddler, the other of me as a matron of honor in a 2010 wedding. My 25-year-old self looks like my younger self thanks to the fact that as the wedding party recessed, the guests blew bubbles. When they did, the little girl within the grownup was entranced. Lastly, there's a picture of a piece of jewelry pictured in the corner. It's a necklace by Jeanine Payer, with a gold and silver butterfly pendant. The inscription is a quote from the poet Rumi: “Dance when you're broken open / Dance when you're perfectly free.”
That lovely necklace: Over $1,200. Having a family that helps me to believe in dreams come true, in a wish come clear: Priceless.
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