Happy New Year! It's time for resolutions. I'm going to attempt to branch out from my usual eat and drink less/exercise more standing resolutions. This year I'm going to put together a special set of Transition resolutions.
I resolve to start attending those seminars and workshops I get constant emails about. You know the ones: those seminars about SSI, Transition roadmaps, and the like. It's high time I find out what's out there, apply for services where applicable, and make sure Cameron and I pursue every opportunity available. It's so much easier to just kick back and think that there's plenty of time ahead of us before any of that nasty administrative stuff will be necessary. I'm not kicking back in 2012. I'm getting my Transition on, along with my running shoes.
I resolve to keep Cameron on his toes. He has developed some less than desirable coping skills of late, which have essentially been shortcuts to completing a task. He is not doing himself any favors by choosing the path of least resistance, and I am doing him no favors by allowing him that path. One problem with addressing this situation is that Cameron has gotten quite adept at masking his effort, or lack thereof. As an example of this cop out coping skill, Cameron was asked to walk the dogs and give them water during a holiday road trip gas stop. My husband realized he had forgotten to pack the dogs' water bottle, and we decided to see what Cameron's solution would be. Sadly, Cameron's solution was to lie and tell us he had given the dogs water. When confronted, he apologized and said he had become frustrated when looking for the bottle. But had we not known that the water bottle was not in the car, Cameron would have just lied his way through the task, instead of asking for help in finding another solution. When I think of this type of scenario playing itself out in the classroom, I wonder how many classes is Cameron faking his way through? How many times does he say he gets it just for the sake of ending the pressure of the conversation? I resolve to cut down on those instances, and not overlook them, just because that's MY path of least resistance.
I resolve to keep the short term in sight, as well as the long term. As I begin to project, and maybe obsess a little, about Cameron's future, I need to remember the here and now. I need to keep in mind that as anxious as I may be to chart his future, I shouldn’t create anxiety for Cameron. Cameron's father asked him what he wanted for Christmas, and Cameron responded that he didn't want anything. He said he would be moving out soon, and he would be selling all his stuff. Um … Okay, maybe I need to dial it down a notch or two. All my prompting for becoming more independent doesn't need to be interpreted as "Pack your bags buddy, you're outta here."
It looks like 2012 will be quite a year. Cameron will be turning 17, and another year closer to adulthood. I'm going to get our Transition ducks in a row, keep him on his toes, and keep my own toes on the ground. Watch this space to see our progress. Happy New Year, and good luck with your own resolutions.
If there is one thing I have learned from having a child on the autism spectrum it is that he perceives the world around him as well as you and me and anyone else, if not better.
What is it that programs society to automatically believe that because a person’s speech is inhibited or seen as different from the norm, that all cognitive function of that person is inhibited as well? I have seen this response time after time when others interact with my son. Now, I’m not expecting that total strangers who have never encountered anyone on the autism spectrum before will automatically know from Cody’s speech exactly what he is talking about all the time. Sometimes Cody’s speech patterns are puzzling even for me. But I strive to put my mind where his is and I can usually figure out what he means. And oh the excitement and the joy that shows in his expression when I do! Sometimes it is almost a look of relief! Like, “Oh Thank God! She did understand me!”
It has been a learning process though. It’s an ongoing one too. But I have found that patience and persistence is the key.
This involves asking many questions. For instance, Cody might say something like, “What are we going to do with them of a night?” This is one of his most common questions. One might think he might mean there are other unnamed people involved in his inquiry. But with a little investigation you will find out that “we” in this instance is actually Bill and me. “Them” is Cody himself. So he is actually asking what Bill and I going to do with him, tonight.
Thought processes for speech and language do not always mean the same thing to people with ASD as they do to neurotypical individuals. It is almost as if they have their own language. In the same way that phrases in foreign languages cannot be translated word for word and still makes sense in the English language, language patterns from many with ASD cannot be translated word for word and make sense to neurotypical people.
For example “Come sei bella” is an Italian phrase that means, “You are beautiful.” But literally translated it says, “How are you beautiful” or “What are you like beautiful.” The word “sei” is also the number six. So it is important that we know that ASD speech process sometimes work the same way. We may have to think of what the phrase really means in “our” language instead of looking at the literal translation which may make absolutely no sense to us.
For some people with autism it is very frustrating because others don’t automatically know what they mean. But for Cody, we find it works much better if you ask questions to decipher the phrase. When Cody talks about seeing a “cobra” he knows this is a species of snake. But it is also a helicopter to him. So I might say, “Where did you see the cobra?” If his reply is “up in the sky” then I know he is talking about a helicopter. He knows from going with Bill to the local museum where artifacts from the Vietnam War are on display, that there is actually a helicopter called a “Cobra.” I then might ask him, when he saw the Cobra. If he says, at the hospital then I know he is talking about the LifeFlite or the AirCare helicopter. Then I can go on to ask more questions about the subject and engage in an actual conversation about the subject matter he has initiated.
I would explain to him in that instance that not all helicopters are Cobras. There are different kinds, and they have different names. If it were only for purposes of Bill and me understanding him, I may not do that. But since he likes for everyone to understand him then I explain these things to him to help him to relate to other people. I may say, “Some helicopters are called, Grasshoppers. Some are called, Jolly Green Giants. They have different names like you and I do. Your name is Cody and mine is Michele. Both are names, but they are different names to say who we are.”
While Cody doesn’t get frustrated with being asked questions in regards to things he says, he does get very frustrated with people who reply with the all too typical, “Yeah … uh huh … ok …” He knows those people are not really paying attention and not showing they care to hear what he has to say. It does indeed take a bit of effort to ascertain what Cody means in some of his statements or questions. But it is an effort well worth putting forth to make him know that he is worth being understood.
Christmas Day has come and gone, and I am in good spirits. I received many wonderful gifts from my parents, friends, and members of my extended family. I gave some gifts to them as well before Christmas with some help from my parents. To me, it feels good to give to others around this time, but I have some trouble finding appropriate gifts for them by myself. I usually require help in this area.
The trouble with picking gifts for others is that I am more inclined to think of what I might want rather than what others would like. I write out a list of items including books, DVDs, videogames, and other things that I would like for Christmas every year. It is easy for me to compose this list because I know what my personal interests are. However, since I tend to focus on myself quite a bit, I rarely concern myself with what others might like or want, and I find it difficult to choose gifts for other people because I do not usually remember what their interests are. In this regard, my parents help me each year with finding appropriate gifts for other people in my life.
Besides myself the only other person whose interests I can remember each year is one of my previous speech teachers. I know she likes penguins, so I try to find a penguin-themed gift for her each year. It is fairly easy to find penguin-themed items, but finding one to give to her that is original and distinctive becomes harder to do with each passing year.
Even though my parents and I speak about gift ideas for others, when I actually go out to shop, I still find it difficult to remember their interests and pick out appropriate items. Again, my parents guide me as to the person’s interests. When I give the gifts, I often cannot remember what I picked out for my friends because, again, I am more focused on my own desires than others. When the gifts are opened, however, I then remember the trips where my parents and I worked together to find them. I am always disappointed that I am unable to remember what gifts I got for each person until I actually give them the gifts, and it is not that I do not want to give them a gift or think of them during the holiday season or other occasions, but it is just hard for me to focus in this regard.
Fortunately, there was one gift I gave this year in which I did not run into any of these problems. My father and I got my mother a high-definition television. Due to the circumstances of her life, my mother currently spends a lot of her time watching television. Therefore, my father and I decided to get her an HD TV as well as a special internet streaming player which allows her to access thousands of television shows and movies, much more than we currently have access to through our cable provider. My father picked out the television and streaming player, but I suggested that we get the player at a store other than the one where we first looked for it, and it turned out that my hunch was right because we found the same player for a lower price at the other store. My mother is really enjoying our gift so I am quite pleased that I was able to help purchase this for her.
My mother has made the suggestion that I start keeping a list of people’s interests so that I can shop more independently. I think I will do this. I always do better at carrying though with tasks when information is written down and organized.
Even though I have trouble finding gifts for other people on my own and often need help to do so, I enjoy the experience. It gives me a chance to do a bit of creative thinking as I think about what other people might like and then find items which I think they will like. I hope to become better at this as my life goes on. I want to get to the point that I can choose gifts for holidays, birthdays, anniversaries, and other special occasions, without having to rely too much on other people’s help. With a list, I hope shopping for others will go smoother. I will be able to think of appropriate gifts on my own, thus giving me greater independence.
This Christmas eve, I found myself in clearing-out mode, going through my closet and letting go of the extraneous. In retrospect, this seems a fitting task for the night before Christmas: Clearing out the unnecessary to make space for the new. I wasn't consciously thinking about it that way, but that's what I was doing.
In the course of my cleaning, I found a small book I'd made when I was six years old, under the tutelage of my first grade teacher, Mrs. Sanosi. I remember her with fondness because she encouraged me in my dreams of writing and authorship. Even at six years old, I knew that I wanted to write.
Fast forward to twenty-one years later, and I've written and published two digital books, and completed two additional manuscripts, one of prose, one of poetry. Most significantly, I am living my childhood dream, working as a full-time, freelance writer as of this November. And this dream began all those years ago, with a little book about Willie. This first book is called “My Brother,” and it is fully illustrated with the best crayon drawings I could manage at the time. The text of the book is as follows:
“My brother's name is Willie. We do things together like jump on the bed and wake up at 6 o'clock and wake mom and dad up.
My brother does things alone like read books and play dinosaurs. He loves to play outside. He likes to be alone most of the time. He hates to do his speech lesson with my mom and dad. He hates to be yelled at. I love to play with him sometimes.
My parents spend most of their time teaching him. I go to my freinds' [sic] house while this is going on. He is used to being alone. He loves to line things up outside.
His favorite book is “The Jungle Book.” His birthday is May 10th. He is 5 years old. He has brown hair and blue eyes. He loves to play his Talking Animal keyboard. His favorite room is his room. He also loves his toy stuffed animals.
I love my brother so much I could run through the wall! My brother is one of the best people I know. My next-door-neighbors have a club house. My brother loves it. My mom and dad love my brother just as much as I do.”
On the final pages, there are a few lines that read, in various states of scrawl, “Willie. Willie. Willie” in orange crayon. Beneath them, my mom wrote, “Willie's Printing.”
Reading this book now, these thoughts arise: first, I admire how my childhood self had a distinctive ability to state the facts (as she perceived them) bluntly, in a free-associative way. Second, I can't help but think: My parents are my heroes. (We woke them at 6 am? For fun?) In light of all I know now, I wish I could re-write the final sentence to read: “My parents love my brother and me more than I will ever know.”
Finally, I notice that I wrote about my brother's likes and dislikes, his preferences and personality, without once referring to autism. Though I'm fairly certain I knew the term, I'm glad that I wrote about Willie as a person, not a diagnosis.
Reading this book reminds me of what has always been true: That I have always wanted to know my brother, and that I've struggled with sibling rivalry since day one (who hasn't?). Yet despite my struggles, at the end of the book, what rings out is love.
The final page of the book is written in Mrs. Sanosi's hand. It says, “This book is dedicated to my family, especially my brother, my friends, and my teacher, because I love them.” And this Christmas eve, with candles in the window and tears in my eyes. I can't say it better than that.
As we're reading all those nice holiday cards and opening our gifts (I got a neato torpedo Kindle), can we think of a gift we can give ourselves?
Let's take stock of 2011—give ourselves a “Year in Review,” as it were:
Sometimes, you can find lots of goodies lying just outside your comfort zone. The Droid that now graces my hip packs more power than my first few desktops combined. I can check my email and keep in touch no matter where I am, find the nearest Five Guys (my all-time favorite burger place, bar none), figure out which stuff at the supermarket is actually good for me, scan certain announcements and instantly put the events they contain into my personal address book and calendar and much more.
How does it do all that? By synchronizing with others the world over. Not to mention by updating regularly.
If a humble little palmtop device can do it, what can we accomplish that way?
Here's something we can all get in on—whether you’re on the autism spectrum or not. Take a few minutes and remember what you hoped to accomplish in 2011. Look and see what actually happened—what you wanted and what you didn't, what you were looking forward to and what seemed to strike you blindsided.
Now, where do you want to go from here in 2012? How do you want to be a better friend, a more successful professional, a part of a happy (happier) relationship? Focus on one or two SMART (Specific, Measurable, Attainable, Relevant and Time-bound) goals. Then visualize them. When you have an image of yourself, say, smoothly chatting with others, or changing plans more flexibly or going out on a date, you can work toward them—and achieve them—much more easily.
“I just don’t want to go to work.” I have heard this phrase countless times in my life, and have uttered the words on more than one occasion myself. Growing up, I always imagined myself in a career, rather than a job. When my adult life headed in a direction that was not leading me down a “career path,” but rather a “job-after-job-after-job” path, I grew increasingly dissatisfied with how I was spending a large portion of my time. For those of us with Asperger’s, feeling unsatisfied in how we are spending a large portion of our time can have disastrous consequences.
My own experiences in the working world for the two decades or so of gainful employment has led me to reach the conclusion that meaningful employment can make or break us Aspies, at any age. This makes the importance of my career now—teaching employability skills to teenagers with disabilities—all the more significant. One of the skills we work on teaching in Career Education is knowing when to ask for help when help is needed. Every time I have a student say to me, “I just don’t want to go to work,” I see this as an attempt on the student’s part to do just that—reach out for help. The reasoning behind the request may end up being mundane, such as being tired on that particular day. Or the reason may be that the student is bored with the job that has been assigned. I suspect most of us, Aspie or not, can look back on our first ventures into the working world and recall that these were not exactly stimulating experiences on any number of levels. I know my days as a supermarket cashier left much to be desired, but there was enough motivation in the job, which suited my comfort level, to keep me going back shift after shift for the better part of three years. The point is, though, that if an individual who struggles in the area of self-regulation by nature is faced with having to perform in a job where there is no motivation to be found, this is a recipe for disaster. My gut tells me this is true, and my experiences back it up.
I spent most of my adult life working in jobs where the only motivation was a paycheck. While this in and of itself certainly is a reason to show up every day, there came a point where the part of me that needed a career finally won out over the part of me that was convinced that I would never be able to do what was required of me to attain that goal. So in addition to making sure that my students know how to ask for help when it is needed, I need to make sure they also learn to recognize those situations where help IS actually needed. If, “I don’t want to go to work,” really means, “I’m feeling very (bored, out-of-place, stuck, undervalued) at work,” then our young people with AS need to learn to be able to identify and express that feeling. Back in the day when I was an adult with undiagnosed Asperger’s and working in a job that was just a job and not a career, I grew increasingly dissatisfied day after day, week after week, month after month. I did nothing to change my situation because I didn’t recognize that I needed help, and therefore didn’t know to ask for it. I would inevitably end up leaving the job under circumstances that were typically of my choosing but not in the best interests of building my resume. The one time when I did recognize that help was needed, my attempts to ask for it in an expected manner were disastrous. So despite the fact that this was actually one of my first jobs in the career that I love and was meant to be doing, this one failed attempt led to a worst-case scenario. Getting my diagnosis—and along with it a much better understanding of how my mind worked and what I needed in order to be successful—led me to the understanding that asking for help is not actually a sign of weakness, but of strength. It led me to the understanding that knowing when to ask for help is not actually a sign of inferiority, but of intelligence on a level I never understood. So in the interest of keeping with the tradition of New Year’s resolutions, I would like to resolve here and now that in 2012, I will do my best as an educator to impress upon my students the importance of recognizing when help is needed, and asking for that help—and while I’m at it, I resolve to apply that lesson to my own life as often as need be.
My husband asked me when I was going to write a column about what it was like to not get a hug from your son. My immediate response was a bit on the defensive side. I told him that Cameron lets me hug him from time to time, and that allowance is more than most moms get in the autism universe. But then I started to think a bit about the well-intended writing prompt. I’m sure my husband notices that I never miss an opportunity to grab our daughter and smother her with kisses. It stands to reason that he would think I’m aching for that type of interaction with Cameron. While it’s quite true that Cameron isn’t very demonstrative, he does show his love in countless other ways that feel just as good as a spontaneous warm hug. How does he love me? Let me count the ways:
Cameron strives to live up to the expectations we have of him. He does his chores without prompting. You don’t know how good it feels to open the dishwasher, expecting to have to unload it, only to discover that Cameron has been there first. Everything is put away where it should be, and anything left in sink purgatory has been moved to the dishwasher. That feeling of pride and love overwhelms me when I realize that Cameron has done exactly what he’s supposed to do.
Cameron respects me and understands that we have different priorities. Cameron has a pattern of dressing, in that he wears a certain type of shirt on certain days of the week. When one of his button down shirts had to go out of the rotation due to a missing button, he dropped casual hints about the needed repair. He understands my challenge with a needle and thread, and only sporadically asked how the shirt was coming along. I knew how important that shirt was to his routine, and the fact that he didn’t nag me about it for the month and a half it took me to finally get around to fixing it made me proud. He knows I’m busy and never considers his needs more important than mine, even if they are.
Cameron wants to be more independent and he appreciates every little nugget I teach him that gains him more independence. Whether it be cooking an omelet or tracking his bank account, Cameron really wants to learn. And when he expresses his gratitude for this education, whether in words or actions, I feel as though my heart may burst with love.
Cameron is certainly no Momma’s Boy, that’s for sure. But it’s clear to me that I’m one of his favorite people on this planet. I remember when he was 4 years old and I was going through a particularly rough time. We were drawing with chalk on the sidewalk, and he said, “Draw Mommy.” I drew a stick figure with great hair. He said, “Draw Mommy sad.” I drew tear drops on the face of the stick figure with great hair. Cameron patted the sidewalk and said, “Oh. Poor Mommy.” I didn’t need him hugging my neck at that moment to know how much he loved me.
It has been a long time since that night when Cody was four years old and we were looking for a seat in the bleachers at a local horse show, when all of the sudden he bolted up the stairs and planted himself next to a little blonde girl who was about the same age. The look on their faces as they gazed at each other and grinned was priceless. That was the first time we saw evidence that our son had a true interest in the opposite sex. It was all so innocent back then but now Cody’s interest in young ladies has matured. He notices much more about them now than just pretty hair and a sweet smile. While not many questions or comments have risen as of yet, I can see the day is approaching when they will.
So how do parents explain the subject of the birds and the bees to an adult child with autism? This is a question I have been pondering a lot over the last couple of years as I have watched my son’s curiosity about women growing stronger a little more each day.
Little by little we have been engaging in conversation about the matter with the greatest finesse we can muster. One of the first things that we talked about was the subject of the respect that two people who love each other should have. This requires a great deal of breaking the term respect down into definitions that make sense to Cody.
I like using analogy and visualization. For instance, “Cody if you wanted to spend an evening with a young lady you really liked, by doing something you both like to do, that might be called a date. But if you choose something you like to do, but she does not, do you think she would want to go out with you again? So would it be better to choose something you both like to do?”
Now with Cody I know his favorite activities, so I use specific examples. Being specific as I can be in the theoretical example I give him provides the vision. I ask him lots of questions such as, “Do you think a girl would like you better if you used good table manners or if you talked with your mouth full?” Or, “You like people to talk to you in a soft voice, so do you think it would be a good idea to use a soft voice with a girl who you want to like you?”
We also have instilled in him what is appropriate with some people in his life is not appropriate with everyone. For instance, while it is perfectly fine for him to bear hug me, but others who do not know him as well may become a bit anxious about that. Therefore it might be better to treat those who do not know him as well in a more gentle way.
We also do role modeling with Cody. If we all go to a restaurant, Bill instructs Cody about what it means for a man to open a door for a lady while he opens the door for me. Then when we are leaving Bill passes the torch to Cody by saying, “Now it’s your turn to open the door for the lady.” Then Cody will open the door.
These techniques are used by parents of neurotypical children every day for the purposes of teaching all kinds of different skills and beliefs. But for those of us with adult children on the autism spectrum it is important to continue those techniques into adolescence and adulthood. Repetition and routine are very important for Cody to progress in all areas of life, including how to develop a rapport with the opposite sex.
These are the fundamentals we have chosen to start with. Once Cody has a grasp on the concept of respect between a man and a woman, then we can begin to talk about the feelings he experiences when he is with a young woman to whom he is attracted. Discussing these types of sensitive subjects with Cody requires using very plain language and skipping the scientific terms. While explaining this adult matter to neurotypical children in a more detailed and abstract manner may be beneficial to them, explaining the same adult subject to Cody requires us to use explanations that can be understood by a concrete thinker.
My brother Willie and I are alike in our desire for order; he likes to have things just so, and so do I. We like lists and plans and knowing what to expect. Unexpected changes to our usual routines do not sit well with us. And though this can pose difficulties at times, it also presents us with moments of beauty, shared experiences of continuity and tradition. In the midst of this holiday season, I think of the traditions that my brother has begun, the small ways in which he shows his love for our family through his acts of service. For example, Willie likes to run to the mailbox and pick up our family's mail each day. He enjoys taking empty plastic, metal, and glass containers out to the garage for recycling, and helping my dad unload the groceries from Costco. He takes pride in his ability to contribute, and becomes frustrated if he cannot complete his usual tasks. For Willie, as for all of us, service to others and a sense of personal success are inextricably linked.
At times I lose sight of this; at times, I cannot see past Willie's support needs, and how much my parents do to care for him. Yet it is important for me to remember that Willie cares for them as well. He gives as he is able. Though at times I forget this truth, the holidays help me to remember. In this season, I am reminded that, in fact, we all need each other's small acts of love more than we know.
In a way, seeing how Willie values his acts of service prepared me for life in the L'Arche community (a faith-based non-profit with group homes across the world, where I lived for two years). In working with the core members there, I learned about the humility and dailiness inherent in real love. I learned that sometimes, the most heroic actions are the small, consistent ones, the ones that no one will applaud or herald. And nowhere was this more apparent to me than at L'Arche's nightly prayer-times. Most often, prayer-times are very simple: Community members pass a candle around the table and share something that they're thankful for, or their favorite part of the day. But at one L'Arche supper I attended, the person leading prayer asked us to share an insight about the nature of the person to our left. Specifically, we were asked to share “what filled them”. Cassandra, who was seated to my right, shifted to face me when it was her turn to speak. With a smile on her face, she said, “I believe that you are full of love.” That unexpected statement has sustained me through many dark times. When I doubt myself, I have held on to Cassandra's words, knowing them to be both an affirmation and a challenge.
People like Cassandra and Willie have taught me that small acts of love are what light our way in dark times, literally and figuratively. Case in point: When my husband and I visit my family for the holidays, I know what we'll see as we drive up the dead-end street at night. As we approach, we'll see a house full of light, a home with candles in every window to welcome us. Turning on the electric candles has become Willie's responsibility, something he does with clockwork regularity each night of the holiday season. I always thank him for doing it, though I'm not sure he understands why I value it as I do. And, in truth, I do not fully understand it myself. All I know is that, when I see those lights in every window, I feel connected to my brother. Whenever I see those small lights illuminating the darkness, I remember all that Willie has to offer, and I give thanks.
As Aspies, we tend to have a tough row to hoe.
If you're an Aspie, you've likely grown up being yelled at, bullied and generally made to feel like a failure. And having little idea why.
Not knowing from day to day if someone is going to scream at you, complain about you to the teacher or the boss or even maybe call the cops on you for doing or not doing something that no one ever told you about tends to put a damper on your confidence.
And when you say something like “Well, if she'd only told me such-and-such I'd have been glad to ...” and the response is like “BUT SHE DIDN'T WANT TO HURT YOUR FEELINGS, YOU STUPID JERK!” you might wonder if you'll ever understand people.
If we had a more visible disability, it would be one thing. People would not be on our case quite so much for doing things that annoy others.
But when we regale everyone, especially our elders and betters, with something like the history of horsemeat, then stare at someone for minutes on end and when confronted about it plead that we had no idea there was a problem, it doesn't go over quite as well. People respond “Don't play stupid—we know you've got brains!”
Understandably, it can feel like we don't know anything and everyone hates us and we shouldn't even bother trying. That goes beyond discouragement to something approaching learned helplessness.
And with other kinds of helplessness, we need to start by discovering the power we already have. And as the saying goes—if it were easy, we'd have already done it.
Thing is, we hold a great deal of power over our lives—we just need to learn to harness it and use it wisely.
If we don't notice all the unwritten rules and expectations that guide society, we can go through life assuming that most people are stupid, oversensitive, irrational overbearing jerks. If the only dimensions of life we can see are technical and intellectual, we figure all we need to do is read enough books and get through school with flying colors and we'll know everything. We can keep telling ourselves that every time we lose a friend, job, volunteer opportunity, date, etc.
Paradoxically, we need to discover our power—beginning by understanding all the things we don't know and all the ways we've been ticking off everyone else.
In other words, we need to buck ourselves up by putting ourselves down a little bit. Not with a blanket, hateful dismissal like all too many people do, but with a point by point road map of the ways in which other people actually tick—and of the ways in which we've been ticking them off. As the saying goes, knowledge is power!
For the first time in eight years, I’m beginning to see signs of … what should I call it? Sibling stress? Resentment? Attention envy? My daughter, Chloe, is eight years younger than Cameron. My passion for all things Autism After 16 is getting on her nerves, frankly. How do I know this? Well, I’m afraid I cannot divulge that, as it would require that I admit to having read Chloe’s journal. And what self-respecting mother would ever do that … much less admit doing it? Suffice is to say that after being read aloud a recent “Transition From The Trenches” column, Chloe was clearly of the “enough already” mindset.
I have two very unique, very different, and very wonderful children. Because of their age difference, I often tell people I have two only children. Despite their differences though, they are very much brother and sister in every sense. I have never seen Cameron as happy as when he found out he was going to be a big brother. For years, he would comment out of the blue, “You know, I still remember the day we got Chloe.” We “got” her, as in we “got” a gift, which is exactly how he thought of her. And Chloe loves being Cameron’s little sister. She likes to pester him, but she also supports him. She’s sensitive to Cameron’s challenges and tries not to be the “smarty pants” he claims her to be. In Chloe’s homemade Thanksgiving card to Cameron, she wrote, “I’m thankful you are my brother because you give GREAT hugs and you are SUPER intelligent.” (Did I just hear “Awwww”?)
So now with all my pride in Cameron’s accomplishments and my ramblings about AA16, I’m afraid Chloe finds herself in the shadows from time to time. She’s struggling with the role reversal, but her way of dealing with this struggle is not rebellion or pouting. She is confiding in her “For Chloe’s Eyes Only—Keep Out” journal. Ahem … so I assume. Though Chloe is not an attention seeker, it naturally gravitates towards her. She’s bright and talented, and her father and I are constantly in awe of her. We are also in awe of Cameron’s ability to work hard and take on the responsibility of moving towards independence. I hope that neither of my children begrudges the other the awe received. It’s a difficult balancing act, and it’s even more difficult to know if you’ve got the balance right. There is an implied understanding expected of them both. They each must know when it’s time to let the other shine, and not take it personally. That’s a pretty big expectation.
Admittedly, as Cameron has entered the age of transition, and as I have embarked on this endeavor with AA16, my focus has shifted over the last year. The good news from Chloe's perspective is that I now work from home, and my schedule allows for much more field trip chaperoning. The bad news is that this whole process of growing Cameron up is clearly lighting a fire within me. Why is that bad news? It's not really. Unless you're the child that is recognizing for the first time in her life, she is not the source of that fire. But as she is the source of so many other fires, I'm sure she won't be filling up those journals too quickly. Not that I would know if she did!
As of this writing, I am officially finished with my latest college semester. I have spent the past three days completing one last assignment, a pair of essays similar to the pair I had to complete for midterm. I feel incredibly relieved now that both of them have been submitted and graded. I have a sense of closure with the events of the previous semester, but I also know that I have one more semester to go, and I am already preparing myself mentally for it.
I felt a copious amount of stress as I began writing the last two essays for my remaining class. I had completed all of my assignments in all of my other courses, so I had plenty of time to finish the essays, but the pressure was still on because both essays would require some time to research and write. I had gotten my reference books at a couple of different libraries about a week ahead of actually writing the essays, but I didn’t have a lot of time to look through them because I had to complete all of my other work first. Therefore, as I wrote each essay, I looked up material in the books at the same time. Fortunately, most of the books contained indexes arranged by topic so I could easily find which pages might contain the type of information I needed. Using the indexes, composing the essays took far less time than I thought they would.
I put the finishing touches on the essays and submitted them yesterday, thankful that both of them and my obligations for my other classes were complete. I have spent today waiting for my final grades to come in and relaxing, something I have not been able to do for quite some time. It feels so good to be able to have about a month off between semesters, and I am also now able to turn my attention to celebrating the holidays with my family. I still have chores around the house to complete, but fortunately, I find it much more relaxing now that I do not have to worry about deadlines and grades for a little while.
I am also anticipating my final semester coming up in about a month. Prior to beginning my finals, I visited my course administrator at the college campus to choose my classes for the upcoming semester. I am looking forward to next semester because I feel I picked out a good mix of classes which will help me immensely in the future. I am especially excited to start the three writing classes I picked up. I have done a lot of writing for my previous courses, but I have not worked in a class devoted specifically to writing just yet. I think I will enjoy these classes more than most of the ones I have had in the past because they will help me to learn many different writing techniques, techniques I hope to use to make my living as my life goes on. My other classes are mostly extensions of classes I have enjoyed in the past, but I feel they may provide me with insight into some interesting subjects to write about in the future. In a few weeks, I will head to the college bookstore to pick up the materials I need for my new classes, and I will be checking the syllabi so that I will be able to plan out my work schedule. This process has always been a bit chaotic for me in the past, but once everything is organized, I will be able to settle down and begin my work in earnest. Now that I know that everything smoothes out as I go, I feel I have been able to handle the process better and better as each semester comes and goes.
Of course, my preparations for the upcoming semester will not fully occur for another few weeks, but I feel like I am in a period of transition. I have finished climbing one mountain, and I am looking forward to beginning my climb up to another peak. I also take comfort in knowing that my next semester will also be the last one I have to do before I graduate. If my past semesters are any indication, I am sure that this one will have its fair share of challenges, but also some truly enjoyable moments. As usual, I look forward to learning new things.
Perhaps it is the spirit of days gone by, when life was much less complicated, that brings Cody to a place where he is of a peaceful heart toward everyone and everything around him.
Antiquing is one of Cody’s favorite past times. From the moment we walk into an antique store, all distractions from the outside world seem to disappear. I see my son transform into this young man who finds a quiet and contented place inside himself where he feels free to be curious and inquisitive about all the things from generations past he sees before him.
He wanders from booth to booth inspecting all the things of old he sees. Unlike other times and other places where he has more of a boisterous demeanor, in an antique store he takes great care and thoughtfulness when handling and examining items on display that capture his attention.
He ponders over them surveying each detail. Occasionally, he asks, “What is this?” “What does it do?” “What is this for?” When we give him answers to his questions, he listens with mindful focus.
Some of Cody’s favorite articles to look at are antique lamps. Many of them have the Tiffany-style shades with the stained glass designs of a multitude of colors. Some are hurricane lamps, which sometimes still have oil reservoirs and work by lighted wick. Others have been revamped to work by electricity. Cody enjoys the ones he can actually turn on and off in the store, which he may do a couple of times before moving on to the next object he notices.
Other things Cody likes are old lunch pails. For instance there was one that was covered in leather and had an image of young children playing etched on the face of it. He also likes the different types and colors of old bottles such as the brown vanilla bottles or the cobalt blue ones that may have been used for medicines.
Then there are the different types of blankets, quilts or bedspreads. Chenille is one of Cody’s particular favorites to touch and feel. While some people with autism are tactilely defensive, Cody is the opposite. He is tactilely sensitive. This means instead of having an aversion to how things feel to him, he has a deep fascination with how things feel to him.
I have often wondered what it is about this environment that makes such a difference in Cody’s overall behavior from the time we step from the car to the time we enter the building. There is almost an instant metamorphosis in his conduct, his personality, really his whole state of being. He even seems to take on a different appearance. The rather hyper animation and expression we are used to seeing in Cody seems to stay in the car to be replaced by a mood of repose and tranquility.
One of the things that I have noticed is that most antique shops have music playing overhead. Generally, it is very soft and soothing. Sometimes the genre is classical but I have also heard acoustic, indie and different types of ballads.
Typically the stores most always have a cozy kind of atmosphere. The booths are neatly arranged, some even to the point they may look like a bedroom from the 19th century.
Occasionally, we do more than window shop. We have been known to buy. Over the years we have built up quite the collection of different pieces of antique furniture and accessories. Cody’s bedroom now looks somewhat like the captain’s quarters of a ship. Our family room resembles our vision of what the living quarters of an old lighthouse might look like. These are two of Cody’s favorite rooms in the house. Neither room has a radio or television. In the family room he often enjoys sitting in the quiet by the fireplace and walking around what he calls his “Antique Road Show Room.”
Even though Cody is now 25 years old¸ we still must engage in positive support for appropriate behavior, actions and decisions. And one of the best rewards we can offer him is a day out to the antique stores, even if it is only to look.
As I shared the news of my recently-launched digital book with a sibling support network on Facebook, I remembered the first form of sibling support I ever experienced, which took the form of a friendship with a fellow sibling named Holly. Our mothers introduced us because they thought we could both use a friend. (They were right.) Yet Holly and I connected not only because both of our younger brothers had autism spectrum diagnoses, but because we were both shy, creative, and extremely introverted girls. Meeting Holly was something of a strange relief; for once, here was someone that I could help come out of her shell. Yet beneath Holly's shyness, I could distinguish the outlines of a vivacious, smart, witty, one-of-a-kind personality, and I couldn't help but want to get to know her.
We were fast friends, spending untold hours together. When we weren't actually visiting at each other's houses, we were talking on the phone. The fact that we could understand one another's unique siblings was a significant part of the foundation on which our friendship flourished. Whenever my brother ran away or lost his temper, I knew that I could count on Holly for support. This support sometimes took the form of in-depth conversations about the nature of autism, but more often than not, it simply took the form of companionship. With Holly, I felt freer to try new things, and we would include our brothers in our adventures, from skateboarding to trampoline bouncing to picking up litter. This last effort was a part of our Kids Can Do Anything! Club, the mission of which was simple: Save the world by picking up litter, one piece at a time. But regardless of what we were doing, being with Holly and her brother helped me to feel accepted in a time when I wasn't quite ready to 'leave normal' on my own.
Self-publishing my digital book also reminds me of Holly, because we developed and published a small neighborhood newspaper, The Whippany News. We typed the paper on her family's computer, begged her dad to print out copies at work each month, and sold it door-to-door for 25 cents a copy. (Special anniversary editions were 50 cents.) I would write articles, and Holly would do layout, provide graphics, and illustrate our signature comic strip. We were so proud of our paper, and rightly so; it was a challenge to put together every month, and an even more daunting task to overcome our shared reticence and sell it door-to-door. But we believed in our work, and we believed in each other.
Sadly, Holly passed away in 2006. Yet I can't help but feel that she would have been proud of me for self-publishing, and that she would have applauded my book's title, "Love’s Subversive Stance." She loved anything contrarian and subversive, and she would have cheered me on in telling the stories of the people with intellectual and developmental disabilities that have changed my life.
When I think of her, I know that the success of this book is not about monies earned or number of copies sold. Instead, its success is about whether or not the work speaks to people, whether or not the stories ring true. It's about whether or not I could write stories to encourage other siblings and caregivers, whether or not I tapped into that same spirit of adventure and courage that helped two very shy girls to go door-to-door with their neighborhood newspaper so many years ago. I only need to think of my brother, playing the piano, or of Holly, drawing comics, to remember what success really means. When I think of them, I remember that true success is about love. Which, as it just so happens, was Holly's middle name.
Friday night, near a downtown ATM:
Hmmm...that's a very interesting ATM screen pattern. I wonder how it reflects on the bank?
As the saying goes, one picture is worth a thousand words. Isn't it cool that my Droid takes pictures and sends them in a flash?
I call up the appropriate application, stand back a bit and aim my Droid at the screen.
Say cheese, Mr. ATM!
I step back and touch the photo on my screen.
Hmmm … a bit blurry and doesn't cover enough. Maybe another pic, with just one click, will do the trick!
An older lady approaches the ATM, presumably to do business.
What do you mean, uh-oh? Don't I have a right to take a picture in a public place?
You mean to let people know the truth? Sure. Let's start by making sure the woman right there knows the truth—about what I'm actually doing. Right now, here's what she's seeing:
You mean to tell me she's a freelance security expert and is going over all these possibilities in her mind over these last few seconds?
No--she's a human whose ancestors fought their way to the top of the food chain on the backs of many more physically powerful creatures and even some of their fellow humans. And thus we've evolved a suspicion of anything out of place—especially around something as sensitive as a money machine.
She's probably read or heard a few news stories about crime around ATMs. She doesn't recall much of the details, but she knows criminals do nasty things there. Besides, the important thing is knowing what to be suspicious about, not the exact minutiae of crimes. People are always thinking up new schemes, and in any case most people can't instantly recall complex stories in a couple of seconds.
Bottom line: She's not going to say to herself “Is this exactly like the crime scheme I read about last week, or maybe three weeks ago, in “Time,” or was it on the TV news? No—it’s a smartphone camera instead of an infrared camera, so everything's OK.” More like “Hmmm...I don't know what's wrong—but I know something isn't right. Maybe snap a picture of this guy, duck into a nearby store and call 911?”
“Good evening, Ma'am.”
“This is an intriguing screen display, which I was just snapping a picture of. Here, take a look and see what I mean ...”
I step back, and wait for the display to come up again. Then I point: “There it is!”
“Wow—that is interesting!”
I nod. “Funny, eh?” And then step back several paces to the side and face away so she doesn't worry that I'm trying to observe her type in her PIN or even planning to mug her.
After she leaves, I go back and snap a good picture. Then I leave.
I would like to take time this week to tell the story of a very dear friend on the autism spectrum, whose experiences may serve as a cautionary tale. This friend, who did not find out about her autism until well into adulthood, spent a lifetime believing that the path to true happiness must lie in her ability to make sure those around her were happy. In childhood, she spent countless hours working to achieve an unattainable level of perfection, and failed on any number of levels, because, of course, perfection is unattainable. Faced with this inability to please everyone all of the time, and to never make waves, she buried herself in a never-ending series of secret, potentially self-destructive patterns of behavior. Even when she felt as though she had attained normalcy, there was that pesky voice in her head that would tell her she was wrong, she wasn’t like everybody else, she was crazy, she would never really be able to function the way everyone else did. Still she plowed on, doing almost all of the normal things that normal people were supposed to do, all the while making sure that everyone around her was happy, or so she thought. Getting married, having children, joining the PTA, these were all normal experiences that normal people had and surely if she could handle these then she would be normal. As she tells the story, though, it turns out she could not handle these. The efforts to please everyone—her spouse, children, extended family and friends, and even virtual strangers—took their toll both physically and emotionally. Through it all, she was convinced that she was happy, because her spouse, children, extended family and friends, and even the virtual strangers were happy.
Lo and behold, the spouse wasn’t that happy, after all. And as time went on, on any number of levels, it grew increasingly apparent that the children weren’t that happy, either. The others may have been—it was hard to tell—but the bottom line was her efforts to please everyone had failed miserably. My friend had never had a real understanding of what true happiness was because she was, after all, crazy, lazy, and certainly not normal … or so she thought. She had never had any reason to believe otherwise.
One day at a conference geared towards parents and educators of children with autism, my friend decided that for all of the times she had compared her own patterns of behavior with those of her children with autism, it might be worth looking into whether or not the diagnosis fit her too … and lo and behold. There was an answer, after all. As it turned out, she was not crazy. She was not lazy. And while she may not have fit the societal definition of “normal,” she had spent enough time on behalf of her own children learning what strategies could help individuals with autism feel at least home in their own skin that perhaps there was a chance that these strategies would work for her, too. And over time, they did, and still do. My best friend now knows she is not crazy and more importantly, she knows that the clearest path towards bringing happiness to others is to find happiness for oneself.
Why I am telling this story? After all, ‘tis the season, and perhaps a more holiday-themed reflection would be better suited to this time of the year. But I am reminded these days, for whatever reason, of all of the children I have encountered over the years in my career who have not been told about their diagnosis. These children and teens know they are different. They know where they have strengths and weaknesses. They may know that one day they will have to fend for themselves as adults. They know that they are expected to be able to do this, but if they are living in a cloud of uncertainty the odds that they will be able to do this are slim. Autism can be a scary word, but it doesn’t have to be. Approached with love, and understanding, and most of all, acceptance, autism can be part of a conversation with that young person who is struggling with self-acceptance. It does not have to be a scary conversation. Our children need the truth in order to be their own best advocates … their own best friends. For adults such as my friend, there was no high-functioning autism, or Asperger’s Syndrome, or PDD-NOS—autism wasn’t thought about as a spectrum. But today, we have the knowledge available to us as parents and teachers to give our children the tools they need to face the world. If you are reading this and you are a parent who fears what hearing the word “autism” will do to your child, please fear not. Full disclosure gives your child the best chance at figuring out who they are, where they fit in, and how to be their own best friend.
In an earlier column, I mentioned that Cameron was participating in a mentoring program with the Gallup organization, coordinated by Special Olympics. As part of this program, participants are asked to take a self-assessment called the Clifton Youth StrengthsExplorer. The StrengthsExplorer is designed to help children ages 10-14 identify their talents and build on those talents to achieve success. Cameron and his peers in the program are all over the age of 14, but based on their learning disabilities, this assessment is the proper tool for them to use.
I helped Cameron take the assessment by reading the questions to him. The questions are the type where you are given a statement, and you rate how much the statement applies to yourself: “Almost never, Sometimes, Almost always,” and the like. There was also an option to respond “I don’t understand this question.”
I actually had to take care when reading the questions to Cameron, because a few of them caused a significant lump in my throat. These were the questions pertaining to having friends and enjoying helping others. What mother doesn’t want their child to have plenty of friends and want to help those in need? But when Cameron responded to these types of questions, he inevitably chose “Almost never.” I so badly want Cameron to have friends that I have dreams about it! I recently dreamt that Cameron had been drinking beer with his friends. The conflict became whether to punish him for underage drinking, or give him a high five for having a group of friends! I woke up laughing at myself for creating this conflict in my subconscious. At the same time, I also felt a little sense of relief that I don’t have to face typical teen drama … just yet, anyway.
But back to the StrengthsExplorer assessment. As Cameron answered the questions I read to him, I was struck by how well he knew himself. He answered “I don’t understand the question” two or three times, but for the most part there was no hesitation to his responses. The results of the assessment are what really blew me away. I couldn’t believe how 10 minutes of basic questions had yielded such an insightful report on my son. Here is a summary of the results:
TOP THREE THEMES FOR: Cameron
ACHIEVING: You have more energy and more goals than other people. You love a sense of accomplishment. You are in a hurry to get started and make things happen because you almost always have a list in your mind of the things you want to get done. It is fun to achieve small goals and even more exciting to achieve big goals that challenge you. The more you get done, the more you feel like a successful person. And the more successes you have, the more you want to have. Finishing a project feels good to you because you love a sense of accomplishment. An award, a good grade, or praise can mean a lot to you because it feels good when your effort and ability are noticed. Because you are a hard worker, you always feel that you could and should be doing more.
DEPENDABILITY: Trust is important to you, and you care about being seen as responsible and trustworthy. People count on you to do what you say you will do. When you make a promise, you mean to keep it. You like being chosen to be in charge of getting something done because you know it means others see you as dependable and trustworthy. Sometimes, being asked to do more is like getting a reward because it means people believe in you. Maybe you have special chores or responsibilities at home or at school. Whatever job you are given, you want to get it done. Some people might say you act older than other kids your age because you are so responsible. You can be a good example to other people. Earning the praise of teachers and parents for getting things done and doing what is right feels good to you. People count on you to do what you say you will do.
ORGANIZER: Scheduling, planning, and organizing your world makes life better. People count on you to get the details right and pull a plan together. You like to create order in your world. Schedules help you feel in control of your life. Planning makes you comfortable and calm about what you are going to do. It is fun to think ahead, organize, and include all that you want to do in your plan so you don’t leave anything out. You like to think about both the big ideas and the details. It feels good to make something absolutely perfect, whether it is as simple as your hair or as complicated as a big project for school. It is important to you to be on time or even early so you are ready to start whatever you are about to do. Not only do you like order and rules for yourself, you like them for other people too. You help yourself and others by pulling all the pieces together.
There’s that lump in my throat again. But this time it’s because I’m bursting with pride!
Question: How many Aspies does it take to screw in a light bulb?
Answer: Did you know that in 1880, Charles F. Brush formed the Brush Electric Company, and installed the first complete electric arc-lighting system in Wabash, Indiana. Wabash was the first American city to be lit entirely by electricity. Wait, what was the question again?
Asperger Syndrome has recently captured public imagination. We are portrayed in popular media as lovable, stiff, and humorously awkward caricatures. This does us a great disservice. While often gifted, we are, in fact, a difficult breed. We tend to upset people, and are typically regarded as selfish, eccentric, and arrogant. Did you see that movie "The Social Network?"
In 1944, Hans Asperger described a group of children sharing similar characteristics, including “a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest, and clumsy movements." These characteristics may offer intellectual advantages, but they tend to piss people off.
We do not choose to appear insensitive to the feelings of others; we have difficulty understanding and relating to them. Our lack of affective expression may bother you. Trust me, we are just as bothered by your all-consuming, unfathomable emotions.
Are you confused, bored, and annoyed by our lengthy, one-sided discussions of our special interests? Do you believe that we flaunt our intellectual abilities in a deliberate attempt to make you feel inferior? Are you incapable of keeping up with our restricted passions and wealth of factual knowledge? Well, that is precisely how we feel about your emotional expectations. Your ever-shifting feelings, which demand our constant attention and understanding, are baffling, bothersome, and boring. They make us feel uncomfortable and inferior.
We know we are not always easy to get along with. Neither are you. Don't limit us by reducing us to stereotypes. We are individuals. Autism is a bit like the Kennedy assassination—the closer you look the less you know. If you're hip, you will learn to dismiss labels and stereotypes and expect the unexpected. If you're square, you will keep chasing an elusive solution to a problem you can't quite define. Einstein said, "If you cannot explain something simply, you do not understand it well enough." Can you explain autism simply, without resorting to Rain Man comparisons? I didn't think so. Don't try to understand autism, try to understand us.
Autism may be accompanied by wonderful gifts, but we can't all be lovably eccentric savants. We do not mean to appear uncaring or arrogant, any more than you mean to appear flighty and irrational. Please, do not judge our nature. Accept us as we are. We are not malicious sociopaths, incapable of love. We are not hysterical mental infants. We’re just wired differently.
We are autistic. We are not occasionally autistic, we are always autistic. When we seem to be particularly levelheaded, caring, understanding, and socially poised, it is only because we are trying very, very hard. Social adaptation is not exclusively our responsibility. All of us must work together to better understand one another.
In reality, there is no standard autistic or neurotypical mind. There are as many minds as there are individuals. No two human beings are exactly alike—that is the beauty of the human race. We are like snowflakes. People have a natural tendency to classify and categorize, but every snowball is nothing more or less than countless beautifully unique snowflakes, clumsily lumped together for strength and durability. When the snowball fight is over, the warmth of the sun returns all of us to our wonderful, original state of fluid diversity.
Accept our differences ... and we will accept yours.
With deepest, yet oddly and infrequently expressed affection,
John Scott Holman
I’ve had several people ask me in the past how Cody handled traveling, particularly on long trips. I’m here to tell you I don’t think I know anyone who enjoys traveling more than my son.
We have taken several long road trips as a family. Northern Wisconsin and Myrtle Beach, South Carolina are two of our favorite destinations; both are roughly 18 to 20 hours from our home.
One of the things that we have always done is to make sure that Cody knows about the trip well in advance. We spend a lot of time in the prior months and weeks, talking about what we’re going to do and where we’re going to stay. We discuss the smallest details like when we need to start packing, if we will have an overnight somewhere in between, and what kind of snacks we need to take to have along the way. If it is a fishing trip and we will be staying in a cabin and cooking many of our own meals, then we discuss with Cody what he would like to eat while we are there. This includes all three meals and snacks in between. We talk about what kind of weather is going on in the area we will be traveling to and what kind of clothing we will need to take and any shopping we need to do. Cody is involved in that too.
Providing Cody with details and making him involved in planning serves two purposes:
Everyone takes their showers the night before so we can leave very early in the morning, usually around 3:00 a.m. When we go to wake Cody, we usually find him already wide awake and ready to jump out of bed at our request. He wastes no time getting his teeth brushed and getting himself dressed. And before we know it he is planted in his usual place in the back seat of the car and waiting for us to join him.
At this hour, many kids and adults who are back seat passengers would opt for passing the time by catching a snooze. We have always taken our own pillows along and told Cody that if he wanted to go back to sleep he was free to do so. Not even as a child has he ever taken that opportunity. He is much too interested in taking in and processing everything he sees along the way, from the very beginning to the very end, no matter how long the drive.
Cody is excited by the smallest of things such as stopping at McDonald’s in another town. He is well versed in our routine for stopping at a gas station to refuel. He knows that he and Bill fill the car while I go in to use the restroom and when I come back out, they are done fueling the car and then they go to the men’s room while I stay with the car.
Stopping at a hotel for an overnight stay along the way represents a milestone that has been reached. Cody knows that the following day we will arrive at our destination. He is not only compliant about taking his shower and sleeping in a bed that is not his own, but he does it with enthusiasm. Because we always get a double room, he feels safe in the new surroundings because our bed is right next to his. We always make sure he is involved in locking the doors at night before we go to sleep. We take along something that is from his room at home, such as Oscar, his favorite stuffed fish, as a measure to make him feel extra secure. Without fail, Cody always sleeps very soundly that night. And in the morning he is up and ready to go without hesitation.
Another few hours of travel time and we will be at our vacation spot and begin enjoying everything Cody has been looking forward to for so long!
By the end of our stay, we are all ready to head for home. At this point, Cody is now eager to sleep in his own bed, but still feels a sense of accomplishment, because of all the plans we made as a family, and his part in making them become a very happy reality.
My brother is spending this December weekend at respite, and as his older sister, I can't help but worry. Will he be all right? Will he hurt himself, or someone else? Will my fears become reality? Will he enjoy the time spent away, or will he feel lonely?
Even though, deep down, I know that Willie is ready to spend respite weekends away from home, the thought of him doing so still makes me nervous. It makes me feel like calling and checking in … at a reasonable frequency, of course. (Just every hour or so.) No matter that Willie is an adult, nearly 25 years old. He's still my younger brother, and I still feel protective. I suspect that I always will.
Willie's been to respite weekends before; in fact, he even spent a week at respite when my parents went on an anniversary cruise. During that week, I talked with Willie every day. It was a sweet, strange time. I felt apprehensive, and simultaneously, so proud of him.
Here's the thing about Willie's respite weekends: They show me my own weakness. They show me my own fear, and they give me a taste of what it means to let go and let my brother live his own life. To give Willie the dignity of risk, to let him try his wings away from home for a little while. Most often, he does beautifully. It's me (and, at times, my parents) who need help. Ironically enough, when Willie goes away, we are the ones who need help.
These days, respite weekends are analogous to my experience of going for a walk or bike ride with Willie; they are akin to that moment when he manages to get so far ahead of me that I can't see him anymore. I know he's there, just around the next corner, but that span of time when he’s out of sight is always slightly terrifying.
This respite weekend also calls to mind a small moment from our childhood, one that I remember with a smile. When Willie was eight years old, Disney released the animated film “Pocahontas.” My brother and I, like so many other children, were entranced. We showed our admiration in our own ways: I practiced singing, “Colors of the Wind” with my cousin, and Willie watched the movie repeatedly, memorizing the dialogue.
One day, though, Willie went a step further. He woke up early, ran downstairs and gathered all of the magnetic alphabet letters from our family refrigerator. After that, he laid the letters out on the living room rug to spell out the names of three of the film's characters: John Smith, Governor Ratcliffe, and Percy. (Percy is Governor Ratcliffe's dog.) For a final flourish, Willie positioned his toy figurines of each character beside their names. He didn't tell anyone what he had done, but left the display on the living room rug for us to find.
My mother was so proud that she captured Willie's work in a photograph, which still sits in an album on our coffee table today. It's become a family favorite. And when I look at that photograph today, I can see not only that it was a great accomplishment for Willie at the time, but that the individuals he chose to focus on were all explorers … even Percy, the dog. All three left their homeland to discover something new.
This holiday, I'd like to give Willie the gift of attention, and also, the gift of freedom. The freedom to bike on ahead. The freedom to spend weekends away. The freedom to grow up, and become the creative, courageous explorer he was always meant to be.
Friday night, open recreation area easily accessible to and visible from street corner.
I sit down with a free newspaper on a concrete ledge near the corner. A mixed group of young people gathered around nearby.
Good thing I'm reading something. People think a lot better of someone sitting by himself if he's reading. Some people figure if you sit around alone not doing anything, you're spying on them.
Also, be careful. With both sexes here, who knows if some guy is going to jump to conclusions and get jealous or protective? Good thing I always wear my wedding band.
Two guys stand next to each other, touching. One of them, wearing a dress shirt and tie, holds out a digital camera, facing them, as far away as his arm will reach, and snaps a picture of them both.
A nearby girl mentions Facebook.
So they're technically with it. Well, no duh—these days pretty much anybody old enough to be out at night and young enough not to be in a nursing home knows about digital cameras, Facebook, and for that matter probably iPads and Google+ too.
Dress Shirt & Tie Guy makes a gesture with his hand in front of his hips ... and that's as far as I'll describe it for a family site.
Stay classy, DS&T Guy.
Another guy looks directly at me. I make eye contact with him and nod briefly, a form of casual greeting without inviting conversation: Hey, I'm OK, You're OK, enjoy the rest of your evening. He looks away and then goes on to something else.
There's a few new crusts of what looks like bread on the sidewalk, probably from sandwiches they just got. A girl in a black leather jacket tells another girl to eat one. Not yelling at her, but not lighthearted like it's a joke. The second girl picks up a crust and eats part of it.
DS&T Guy starts up a remote-controlled toy car and sends it after a few people at the corner waiting for the light to change. They have to watch to make sure they don't trip on his car.
Isn't he just the charmer?
Toy car goes toward a group including Crust-Eating Girl. She bends down to pick it up. Black Leather Jacket Girl tells her to stop—which she does.
Looks like BLJ Girl is dominant—at least with respect (if that is the term) to C-E Girl.
Toy car now goes toward a vendor. He turns around to face toy car, brings up one leg behind him—then puts it back down and grins slightly at DS&T Guy.
Obviously he was kidding about kicking the toy car, and wants DS&T Guy to know it. Maybe he was subtly politely warning DS&T Guy to keep it away from his cart?
Toy car does not go near cart again.
Look Guy is looking at me again. Again, I look and nod at him. When he doesn't look away right away I do so—horizontally.
Don't get into a staring contest—who knows how he might interpret it? Also, when looking away, do so horizontally—level to where his eyes were. Don't look down, because that could be taken as submissive. Don't look up, because that could be taken as snobbish. The whole idea is not to challenge him, but let him know I consider him an equal.
Also, do it normally, not suddenly, so he won't think I'm afraid or have something to hide.
It works. Look Guy goes on to something else.
Odds are he's not challenging me, just making sure I'm not up to no good.
After a few minutes, I read a bit more out of the newspaper. When I look up again, the group is gone. I finish reading, then fold it up, walk away and put it back into bin for someone else to read.
No. Just two little letters. So easy to spell, but so hard to say. At least for me anyway. Yesterday I received a call from the executive director at Cameron's school, asking if I would consider being this year's auction chair. Of course I said yes. But now I'm wondering if it's going to cost me months of psychotherapy. Am I crazy to take this on? I have no idea how to chair a school auction! Aren't auctions a bit like the Olympic Games, as in they're supposed to be "the best ever"? I assume the chairperson is expected to top the previous year's fundraising, make sure everyone has more fun than at any prior school event, and build a sense of community for those newcomers in the midst. I know how to throw a party, but when it comes to meeting the above expectations I get a little nervous.
All this pressure has me thinking: How would Cameron feel if he were in my shoes? Would he be nervous? If you don't abide by societal norms, does that mean you don't feel the pressure to live up to expectations society has of us? I don't desire the freedom to belch and scratch in public, but I'm finding myself daydreaming about what it would be like to not care what others think of my actions. I'd love the freedom to just do what I want, without regard to how others feel towards me. Just for a day.
What is it like to be Cameron in society? I would really like to know. Is he making an effort just because he thinks that's what I want him to do, or does he have an internal desire to fit in? I can't answer that question with any degree of certainty. I can't even tell you whether or not Cameron realizes he's different from most people. I've told him he's different, but did that hurt his feelings? Does he care?
My gut tells me that Cameron wants to fit in. While at a restaurant recently, I asked the waiter for his recommendation between two starters I was considering. When it came time for dessert, Cameron asked the waiter which sounded better to him: a selection of ice cream and sorbets or chocolate soufflé? When the waiter left, Cameron told me he had seen me ask the waiter for help, so he decided to do it too. I was thrilled he asked the waiter, and didn't ask me to chime in. Of course, I had my answer ready for him, but was pleasantly surprised I didn't need to offer it. (The soufflé was delicious, by the way.)
So maybe when it comes to dealing with my anxiety about the school auction, I should borrow a page from Cameron's guide. I should find someone that sets a good example of how to be successful, and emulate that person. Whether or not Cameron emulates because he innately wants to fit in, or because he's been conditioned to do so by years of prompting doesn't really matter much to me. The fact he makes the effort is what matters.
The end of the semester is drawing near, and I am relieved that my current work schedule will soon be coming to an end, and I will soon be able to relax for a few weeks before my last semester of college begins.
However, I am dreading the due dates for my various final assignments and the sudden spike in difficulty they have taken. If my college experience as of right now were a baseball game, it would be the bottom of the ninth inning with bases loaded, and I would have to hit a home run to bring everyone in and win.
Up through the Thanksgiving weekend, I did not have too much difficulty with my courses. The only assignment that had required a lot more work than usual was a midterm with two essays. I had to work into the night for several nights in a row in order to get that assignment done, and during this period, my spirits sank lower and lower. I like to get finished with my work earlier in the evening so I can have a little time to unwind, but in order to get the midterm done, I had to stay up past 1:00 a.m. to refine my thoughts and ideas. My misery subsided as soon as I handed the assignment in, but I knew it was only a matter of time before the final exam would be due.
My troubles began once again as Thanksgiving approached. I had a bibliographic essay for a course which was due just before Thanksgiving, and it required considerable work. It had been quite a while since I had done the midterm, so I was caught slightly off guard when I had to work into the late night for two straight nights to complete this assignment. Fortunately, I diligently completed the work and was able to celebrate Thanksgiving with my family, watch the parade on television, and have an entire day without having to worry about college work. It was a great feeling of freedom and relaxation. My family and I made quite the day of it. We visited with both sides of our family and had a great time.
My fun continued over the rest of the Thanksgiving weekend. I still had to do some college work, but the majority of my time was dedicated to doing some fun activities with the rest of my extended family. I went over to my uncle’s house to visit, and I played video games with some of my cousins. I was the lead singer for our “Guitar Hero” band. On Sunday, my family and some of my aunts and uncles headed to a nearby antique show. We stayed for a few hours, and I was able to buy some items which suited my interests, and which I probably would never have known about had I not gone that day. All of these activities were fun diversions for me, and I feel that they were the calm I needed before the new storm of work came.
In the past few days, most of my mirth has faded away because of two different final assignments for two of my courses which have predominated over my regular work. One of them is a final exam, again with two essays due, which requires a lot of work to complete. I had to head out to the college library and a public library near my home a few days ago to collect books which will provide research material for the essays. With the help of the librarian, finding them proved to be a fairly simple endeavor, but I am hoping and praying fervently that I will not have to search through them relentlessly for information only to find that they do not have what I am looking for. When I did the last exam, I ran into this exact same situation and I did not have a lot of time to remedy it. Luckily, I was able to find some different pieces of information in the books which proved to be useful and completed the essays with only hours to spare. I hope that I will have more time to complete the current essays and that the research for them will go more smoothly. It was nerve-racking.
The other assignment is a combination of two different activities. First, I have to write abstracts of two research articles I found on the college library’s database, again, with the help of the librarian. This was particularly interesting because I also learned a new skill since I had never had to use research articles before and had never had to find them. The librarian showed me step-by-step how to access them.
After I write the abstracts, I then have to write a one-page essay on whether I agree or disagree with what one of the articles says. As this is all new to me, I am finding it a bit stressful, but I am pushing forward.
I will spend the last couple of weeks of the semester completing these final exams and assignments. I cannot wait until it will all be done and over with for another semester. I am looking forward to Christmas and relaxing on the college break. For now, I will do the best I can to get through my tough workload and hopefully make it out to the other side with good grades and more knowledge.
First, I see the change in mood. What was once a lighthearted and peaceful expression on Cody’s face is now a solemn one, the one we might get in the beginning of a brewing storm. Then the edge begins to appear on the nerves. Pacing up and down the hallway, stimming by twirling his drumstick, a pencil, pen or any other long, thin object he can find and the repetitive use of negative phrases are all Cody’s classic signs of building anxiety. Anxiety gives way to frustration which manifests itself in the form of stomping, escalating verbalization of negativity, and perhaps banging his drumsticks on the walls or furniture. And then the storm erupts. To witness my son pounding himself in the head and face with his fists, yelling and screaming as if he was in the most excruciating of all pain, and attempting to do things such as charge full force through a plate glass window has been both terrifying and heartbreaking in a deeply profound way.
Cody was always rambunctious as a child. Like many children with autism, he had a difficult time with knowing where his body was in space. His gross motor skills took much longer to develop then that of neurotypical children. His ankles were weak and so sprains and bruises were common. While his elementary teacher at school was attuned to how easily he would fall and how often a scrape or bruise would appear, it became a different situation when he entered middle school and his gross motor skills began to finally function properly more often. So because he was becoming more coordinated, falls were not always seen at school as they had been in the past. When he fell and bruised his arm at his grandmother’s house and went to school the next day, his middle school teacher thought it necessary to report it to Child Protective Services and we suddenly found ourselves under investigation for child abuse, even though there was a mountain of documentation of falls, accidents, bruises and other minor injuries that had happened at school. I was both mortified and petrified of what the outcome of the investigation would be.
We met with the investigator once and explained what had happened and also informed her of evidence of many of the same types of incidents that had been documented during his elementary years in school. The interview with her ended after an hour or so; the investigation was quickly dropped and we were absolved of any wrong doing. But while it was worrisome enough when bruises and scrapes were due to accidents, there were also those times when they were self-inflicted. For any mother who loves her child, this situation is a complete, living nightmare.
Cody’s years of puberty were the worst. While we had noticed in the past there were definite triggers to Cody’s tantrums and bouts of self-injury, we began to see them manifest without warning and with no apparent cause. One moment he would seem perfectly happy and the next he was screaming and banging his head on the floor. Fortunately, I have more upper body strength than many women. And I knew how to perform a bear hug restraint without causing injury to Cody or myself. Doing a restraint like this requires the knowledge to do so without impeding respiratory and circulatory function, so extreme caution must be exercised. We often sat on the floor, Cody on my lap with his back against my chest and my arms around his chest and arms, while I clasped my left wrist in a death grip with my right hand until his rage subsided.
We desperately sought any suggestions from Cody’s doctors. Their only answer was a higher dosage of medications or, “Let’s try a different one.” Many of the drugs we tried had little or no effect, and others exacerbated the problem tremendously. There were times when he would fly into a blind rage and not only attempt to hurt himself, but others as well. I was not excluded from being subjected to flying fists, biting and one attempt at choking.
Thank God these outbursts became less and less frequent, and much less volatile as Cody got older and now when we do see frustration building, it’s much easier to redirect his attention in a positive direction. Sometimes, we give him a warning of consequences such as having to stay home in lieu of an outing, or we may have him do something constructive such as practicing his typing on his computer. While he may be reluctant to comply with our directives at first, it is usually not very long before sound reasoning takes over, he employs better judgment, and the meltdown is averted.
Amidst the hustle and bustle of this holiday season, it may help to remember that one of the most precious gifts we can give to one another is, in fact, an intangible: our honest, undivided attention. Real attention can be transformative. Another person's focused attention can call forth stories and music we didn't know we had in us. It can allay doubt and discouragement, helping us to be honest and brave. In turn, paying attention to another person can offer us insight into their minds and hearts, and a feeling of true, substantive connection.
I say this because I remember a significant moment last winter in which the power of attention was made manifest for me. My husband Jonathan and I had traveled to New Jersey to visit my family for the week. One day, my aunt, uncle and cousins came to visit us as well. The house was full, and so, predictably, my brother Willie retreated into the basement after greeting our guests. He emerged before supper, and led us in prayer before we ate. He was in good spirits, and so it seemed there would be no destruction of person or property that day. But the real surprise of the evening came after the meal, when he walked over to his keyboard and started playing songs for us.
Instinctively, we rose from the table and gathered around the piano. We stood in small clusters, forming a loose half-circle behind Willie as he played. He ran through his repertoire for us, pausing briefly between each piece for our words of praise and (soft) applause.
For the grand finale, he began to play, “The Sound of Music.” As he played the sweet notes, the song's lyrics ran through my mind. Suddenly, the song became personal: My heart will be blessed with the sound of music.
It wasn't simply the clear tones of my brother's playing that astonished me that night. It was the manner in which he played: purposeful, strong, and confident. After years of witnessing his struggles, seeing him in his element was more than I could have imagined or hoped for. In fact, it made me want to weep with gratitude, and I could tell I wasn't the only one. The group of us, usually so merry together, fell silent before Willie's simple songs. As we stood there in quiet thanksgiving, I had the sense that this specific music was born not only from my brother's special talent, but from our collective witness. We stopped to listen to all he had to offer, and that offering was stunning in its beauty.
Since that experience, I've made an effort to stop multi-tasking when I'm spending time with beloved people. It's a challenge; in fact, it's a counter-cultural thing to do. I don't know about you, but I've experienced plenty of people checking cell phones during conversations and updating their status during meals. And while all these things by themselves may seem innocuous, what they add up to is distraction. Lack of attention. The moment, missed. But when we do pay attention? It can translate to sharing the sacred.
As Willie ended his playing that night, the original song lyrics stopped running through my mind, and these verses took their place:
You play, “The Sound of Music” for us.
We listen with pride in every right note.
My musical brother is giving us a concert.
These hands that bring us music punch walls.
These feet, pushing pedals, kick and thrash.
The man in control is, at times, out-of-control.
How could this happen? I ask. And how can I not
believe, seeing it? Sometimes miracles look like:
someone playing piano, everyone paying attention.
Last Tuesday my sister Connie had to have a surgery.
Here's what really gets to us about the holiday season. It's not the way advertisers assault us, though that's troubling.
By the time you read this, I will have returned from a week’s vacation in Florida with my family.
Schedule-based living, however, can be a tricky proposition. On the one hand, a schedule orders the day, the expectations, and is comforting to Madison who has difficulty with transitions....
The search for a postsecondary program for a student like Cameron is not much fun. It’s actually pretty awful.
Last week I had the opportunity to head to Washington, DC to attend the “Autism Speaks to Washington” summit.
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