Living in Missouri presents a number of predicaments for all who reside within its boundaries. While weather during the summer is hot and dry, fall is usually very mild and pretty, and winter is damp but not terribly cold. The spring however, is fraught with tumultuous thunderstorms and tornadoes. Cody doesn’t like either one.
The mere sound of gusty winds is enough to set my son on edge. Lightning and thunder will send him down the stairs to the basement in a hurry. Then we see the anxious pacing, and until the storm has passed, we hear the talk of power outages before they happen, falling trees and a sundry of other predictions of gloom and doom.
When inclement weather happens during day it is bad enough. But many storms seem to wait until the dark of night just after everyone is tucked in their beds and just about to drift into peaceful slumber. And then a single clap of thunder can begin an all-night cycle of Cody being up and down out of bed. Reassuring him that everything is fine is useless. Upon climbing back in my own bed I hear the creak of the floor and footsteps up and down the hallway. This makes for a sleepless night for everyone. Add to it the fact that sometimes the storms last for several days in a row and you have a brutal 72 hours of sleep deprivation and irritable moods.
Cody is no more at ease with storms now at the age of 25 than he was as a 5-year-old child. It was about five years ago when Bill and I finally conceded that he may never be able to sleep through the night when winds and rain were audible or when flashes of lightning would illuminate his room. We had to do something for his sake and ours. So I decided to try having Cody sleep in our room.
Our bedroom is large enough to accommodate another bed. But instead of putting in a stationary bed, I went shopping for an airbed. I found one that was queen-size and would rise 21 inches from bottom to top. I made it up with a mattress pad, sheets, a blanket, and quilts so it would seem like his regular bed. I changed the pillow cases so they would match the sheets on the airbed just the way he likes them. And then I prayed it would work.
I knew storms were due to roll through our area throughout the night. The winds were predicted to gust up to 40 miles per hour and we were supposed to have heavy rains. Thunder and lightning were bound to occur. Now, my last step would be to prepare Cody for the new plan of action.
After the bed was all ready to go, I brought Cody downstairs to see it and asked, “How would you like to camp out downstairs tonight with Bill and me?” Upon first sight of it, he really didn’t know what to think. He walked all around it, investigating every angle. I asked him, “Why don’t you lie down on it and try it out.” He was very unsure about it at first, but then reluctantly he decided to try it. He eased himself down and lay on his back. He was statue-still for about two minutes. His face was void of expression during this time. But then a grin began to emerge. And then, he flopped over on his stomach and the sound of his muffled giggles set my heart at peace. Now if we all could only get a good night’s rest.
Nighttime came and so did the storms. What started out as a light rain pelting the windows soon turned into a torrential downpour. Thunder crashed and lightning flashed and the raindrops soon turned into hail. The clatter on the roof was enough to make me tense. But I wasn’t about to show it. I calmly got up from my chair and told Cody it was time for bed. To my surprise, there was no hesitation, no balking or anything of the like. He got up and went straight to his new airbed, climbed in it and pulled the covers up around him. He squirmed around for a bit then said his prayers as usual. When I went to my own bed, he seemed content to stay put. I climbed under my blankets and turned out the light. I waited and listened for a few moments. Then I heard the sound of a faint snore coming from the direction where Cody lay. I fell asleep that night to the sound of rain falling and my son snoring. It was music to my ears. My plan had worked and now we could all get a good night’s rest.
It's always a strange feeling when someone asks you to lead a group you've never been a part of before. It's an honor and a challenge, both. I'm nervous at the prospect, but even expressing this fear in writing helps me to dissipate it, and to prepare.
What's going on? This weekend, I'm planning to attend a Family Support Day hosted by the Lollipop Kids Foundation, a non-profit based in the DC Metro area, which “exists to combat social stigmas, ease the financial burden placed on [families], offer emotional support, and provide brief respite so that every child with a disability has access to a hope and a future.” At this particular Family Support Day, I've agreed to meet with and lead a group of fellow siblings in discussion and reflection. We'll share stories and (hopefully) build bonds with one another.
I don't have a precise plan in place for our time, but I envision creating a space safe for sibling reflection and connection. We'll speak, be silent, draw, and write letters to our sibs—which, I suspect, will become love letters. I'll plan to share relevant stories from my book, and also listen closely to the treasure-troves that others have within them.
Though I've certainly experienced the power of sibling support in my own life, there's a part of me that always hesitates before meeting fellow siblings (and especially so when I'll be the one leading this particular group). I wonder: Will we be able to translate our specific experiences into something the rest of the group will understand? Will we be able to empathize with one another, and offer encouragement and hope? I have to believe that we will.
Personal as our family relationships are, I believe that we can find common ground if we're looking for it. As special-needs siblings, we've all had crash-courses in paying attention, listening, and connecting with someone with a highly individualized communication style. Siblings face unique challenges, yes, but we also receive amazing gifts, if we so choose. Siblings know the pain of feeling excluded from “normal” … and we know the joy of being included in something better.
For my part, I've found that fellow special-needs siblings tend to be a remarkably open group. The reason is no secret: Our siblings teach us not to make assumptions, to be open to possibility. Furthermore, our siblings are our best instructors in the art of flexibility and patience. As someone who has struggled with perfectionism, I appreciate how my brother Willie has taught me about the power of play and the significance of happiness.
And even though I have a highly verbal, hilarious, and capable brother, I've also experienced the intense difficulty of behavioral struggles, self-injury, and violence. This being the case, I can relate to siblings whose brother or sister may simply seem “different” from others, as well as to siblings whose brother or sister needs intense levels of support and behavioral intervention.
In short, being Willie's sister has helped me to appreciate the good stuff and let the rest go. And that is what I'll take with me into this event. Whether our group is a “success” or not, what matters is our willingness to show up, to acknowledge that we have something to offer one another.
In a sense, we special-needs siblings are brothers and sisters to one another as well. We're a part of an ever-growing family, standing in friendship and solidarity, empowered to see past appearances. And when we're willing to make an honest attempt to be present to one another's lives and stories, the possibilities are boundless.
Autism spectrum disorders (ASDs) involve what Bill Goodyear, who has taught and coached Aspies and autists for over 30 years, has called the Triad of Impairments—difficulty with communication, with social relationships and with flexible thinking.
As William Stillman, an Aspie speaker, has pointed out, a high percentage of Aspies are unemployed or underemployed. Sherry Moyer, Executive and Research Director of the University of Toledo Center for Excellence in Autism, tells of Aspies just 25 or 30 years old who have already held 20 or 30 different jobs. Many, if not a majority of, Aspies have literally no friends. We also have a very hard time finding and keeping romantic partners.
The impairments we have cause these problems for us. Some people feel that we shouldn't have to change; the rest of the world simply needs to accept our differences and accommodate us by, for example, not taking offense at our staring, stimming or standing too close. People should accommodate our inability to change plans on short notice, and should let us do things one at a time, etc. While we do need some accommodations in order to contribute to society, we need to remember that acceptance and accommodation need to go both ways. Imagine, for instance, substituting another disability for autism. We might end up with something like this modest proposal:
Glaucoma patients...ummm, people with glaucoma...errr, people on the vision-challenged spectrum (PVCS), unite!
Why do people keep trying to find a cure for glaucoma? That's eliminating PVCS—a form of genocide!
Why can't people accept us as we are? Why do they keep trying to change us—“for our own good,” no less?
Society is ableist! It's currently built around people who can see wide angles. They miss our unique strengths ... after all, when your vision is limited to a small circle, you don't get distracted easily, right? We PVCS can focus our vision much better.
Also, our sense of hearing can get stronger than average to compensate—another unique strength!
Why does society discriminate against us? For example, why do we need any kind of peripheral vision to drive a car? Isn't it all too easy to be distracted—say, by a pretty young woman walking on the sidewalk, or a billboard, or a bumper sticker?
Instead, we should have cars with telescopic windshields. Maybe also roads with only one lane each way, so that we don't accidentally get hit by some car we can't see changing lanes. (And can't people hear other cars, anyway?) Society can accommodate us if it really wants to!
Meanwhile, if you have to directly face someone to see and talk to them that makes eye contact much easier. So glaucoma actually improves social interaction.
Not to mention so-called “tunnel vision” means we don't need really big flat-screen TVs or monitors or other expensive stuff ... any old screen will do.
And it helps us hunt—in fact, it's just like Thom Hartmann points out when he uses the model of "a hunter in a farmer's world" in talking about ADHD! We can focus on the prize, just like (other) predators with their eyes in front of their heads instead of off to the side like prey.
We need to focus on the beauty of glaucoma—being able to shut out more and more of life's visual annoyances, better exercise for your neck as you turn to look at everything—even being less likely to accidentally look at a solar eclipse!
Maybe it's not “normal” to look out at the world as if through a tube. So what? Normal is a city in Illinois. Normal is a dryer setting. Normal is not for people! Visual diversity is the way to go.
So I found myself on Dictionary.com the other day, and drawn to the definition of the word, “independent.” According to this source, independent can mean a number of things, and I would like to take this opportunity to explore these meanings a bit as I reflect on how much focus is being placed on fostering independence in the lives of the young people I teach (not to mention the ones I live with). And not coincidentally, I have given more than a passing thought to what independent means in my own little world. So here it is:
Independent is defined as:
Not influenced or controlled by others in matters of opinion, conduct, etc.; thinking or acting for oneself. Not subject to another's authority or jurisdiction; autonomous; free; not influenced by the thought or action of others; not dependent; not depending or contingent upon something else for existence, operation, etc. Not relying on another or others for aid or support.
Hmmm. Here’s the part where I get confused. I have taught individuals with autism spectrum diagnoses young enough to still legitimately be in diapers and old enough to be able to consume alcohol legally in all 50 states. The one common denominator—regardless of whether the particular lesson being imparted has to do with simple greetings, multi-step tasks, or taking care of one’s personal hygiene needs—has been that we want the individual to be able to demonstrate that they can perform the skill or task independent of prompts or assistance. There is nothing we are asking our young people to do that we want them to need to rely on others for… just like the definition says, right? Well of course. And in my own little universe, the idea of asking for help, of admitting help may be needed, of knowing when and how and where to ask for help (all, by the way, areas we focus specifically on in my Career Education part of the universe) has only recently reached the point where I can recognize that admitting that I need help is not the same thing as admitting helplessness.
So we want to teach our students how to be independent in everything. At least, that’s what all of my data collection over the years would lead me to conclude! But back to my confusion … at the same time I am teaching students how to independently do this, that or the other thing, I also want them to recognize, understand and most of all value the idea of interdependence. I want them to be able to listen to what their supervisor on the job tells them to do and just DO IT BECAUSE THE BOSS SAID SO while at the same time not being subject to another’s authority or jurisdiction. Then, I want them to know when to ask a coworker to lend them a hand on a certain job while at the same time not relying on another or others for aid or support. Then, just to top it off, I would like very much, personally, to be able to listen to the input of my colleagues, supervisors and subordinates and integrate the valuable pieces they bring to a discussion while at the same time not being influenced or controlled in matters of opinion or conduct. Okay. Remind me again, exactly what should the end result be? Because as one might deduce, I seem to perhaps still be just a little confused. So I went back and looked up interdependence, and found that definition pretty clear-cut: “Depending on each other.” So maybe, in the midst of all this quest for independence, we should keep in mind that accessing help is not the same as being helpless. On the contrary.
It’s all about employability. Maybe not all about employability, but it’s a lot about employability. I don’t see Cameron as someone who will be a degree-seeking candidate in a postsecondary setting. If, however, that were to become a consideration, the decisions to pursue a degree would be made by carefully weighing the options. What will best further his employment opportunities, and how to best develop job skills? It may well be that those decisions are three to five years ahead of us, but developing employable skills starts now. Or sooner.
So what will the most difficult obstacles be when Cameron is looking to join the workforce? Will it be his academic challenges, his verbal inefficiencies, or his social awkwardness? Or, as I suspect, a combination of all of the above? Or maybe it’s something else I haven’t even thought of yet.
So as I said above, it’s (pretty much) all about employability, and it starts now. I am the domestic boss, and here’s how it’s going to go: No more whining, arguing, or grumbling about assigned tasks. Cameron has his chores around the house and in exchange for doing these chores he gets a certain monthly allowance (income). It sucks for Cameron that a mild winter has brought on grass mowing sooner than usual, but a reminder that the grass isn’t getting any shorter should not be met with “Fine!” I’m the boss, remember? I deserve a little respect. Maybe not to the point of snapping his heels together and answering, “Sir! Yes Sir!”, but a degree of respect and appreciation for my authority would be well received. (And hey, put a smile on that face, and come review time, I might consider a raise.)
I really think there’s an opportunity here for Cameron to practice the behavior he should be exhibiting at the workplace. I may be in the habit of ignoring Cameron’s grumbling and terse replies, but I don’t think an employer will be as understanding as dear ol’ Mom. If I can get Cameron to respond in an appropriate manner to his domestic bosses, it’s likely going to result in a most splendid relationship with his managers in the workplace. Hey! I may be on to something … I should let his academic bosses in on what I’m after here. Arguing, excuse making, and feigned helplessness are not in Cameron’s best interest. If he has a legitimate problem or concern, he needs to utilize those self-advocacy skills he’s developing per his IEP to appropriately address the issue.
Here’s a call to bosses everywhere, whether domestic, academic, or otherwise: Rise up against bad attitudes. Exert your authority and let it be known that a happy employee makes a happy boss. And everyone wants a happy boss, because everyone wants to be a happy employee. With all this contagious happiness, the world will be a much brighter place. Namaste, kumbaya, and peace out.
Go home sailor...
The waters have all dried up.
The ocean has fled and your ship sags uselessly on the rocks.
Behold the rotting fish!
The cruel heat has reduced them to simmering, gelatinous pools.
Yes, it is a strange graveyard sailor, and you'd best go home.
Go home to your poor mother. She is old and she is dying,
Yet she waits up for you at night and leaves the porch light lit.
Restless sailor, what is it you seek?
I have seen you wandering in the gray October mist,
Trudging wearily past tombstones that jut from the earth like the crooked teeth of some lunatic hillbilly.
What has happened to the world? There is nothing left but dust and dreamers.
So what do you dream of sailor, and what is this strange yearning that stalks you? It is a melancholy figure and it walks beside you in a dead man's clothes. It speaks and the voice puts the fear in you, making your flesh feel like a field of wilting flowers.
I beg you to go home.... You belong there always. Remember? Remember?
In that other time you played kick the can in the sweet heat of a summer night. For hours you played. One by one the others yawned and disappeared into the chilling suburban darkness... but you stayed on.
And still you stay, searching for that purple, twilight, childhood something. The neighborhood is dark save one light. Your mother leaves it lit. It is a sad little lighthouse, ever summoning you to the shore.
Go home sailor, please go home...
We just had Cody’s first quarterly meeting with the staffing supervisor of Cody’s new service provider, Mike, and Cody’s case worker, Jacquie. And it went well!
It was refreshing for once to be able to say that we were pleased with Cody’s tech, Stephen, and the kind of initiative he puts forth into helping Cody work his program. Stephen is able to be stern with Cody without using a harsh tone of voice or intimidating demeanor. By the same token, Stephen is also not intimidated by Cody—something with which staff from his previous service provider seemed to struggle.
Patience and determination are among Stephen’s greatest qualities, and perhaps the qualities we look for the most in any staff member who would be here to help Cody in learning his daily life skills. Cody requires multiple prompts and directives at times to stay focused on a task. Having observed Stephen and Cody from behind the glass, so to speak, I know that Stephen is conscientious and will follow through with these requirements until Cody has achieved the given goal. In short, we were able to tell Mike and Jacquie that the objectives in Cody’s plan were being carried out as stated thanks to Stephen’s enthusiasm and assertiveness.
Mike and Jacquie were also pleased to see the daily schedule Stephen and I posted on the door to the family room. They liked the fact that we were truly involved in Cody’s program through communicating with Stephen, and putting forth our own efforts to make the plan a success. They expressed their appreciation that we as Cody’s parents were on board to work with them as a team, and not to simply state our desires and then sit quietly on the sidelines expecting the agency to take full responsibility for Cody’s progress.
We then exchanged ideas for ramping up expectations for Cody a bit. Now that Cody and Stephen have been working together for a month, and Cody knows he is expected to participate and cooperate with Stephen, we decided to set up a reward system. We are going to implement a sort of grading scale. This will be 10 point scale, with one being the lowest number. The grading scale will be used by Stephen to give Cody a visual of how well he completed a given task, but also be used by Cody to rate how he felt about that task. So for instance, if Cody and Stephen are working on math, when math time is over, Stephen will draw two scales on the dry erase board with the label “Math” written above it. Stephen will use one scale to rate how well Cody completed the task and Cody will use the other to rate how he feels about the task and his performance. The scales will be used for each time block and task throughout the four hour period of each day Stephen comes to work with Cody.
Rewards will come in different forms. Cody will have an opportunity to earn a small reward each day. Daily rewards might range from a candy bar and a soda, to a trip to McDonalds for an ice cream cone or maybe a trip to the Dollar General to buy a dollar item of Cody’s choosing. But there will be weekly rewards as well.
Weekly rewards will be given on a basis of Cody’s overall score for the week. So for example if his average score for all the tasks during the week is an 8 or above, then he could earn a special outing. This could be a trip to see a movie or lunch at one of his favorite places to eat followed by a stop for his favorite milkshake.
I believe the reward system will give Cody more incentive to work harder and put more focus on achieving each task on the schedule. The scale will give a concrete visual to help Cody understand how well he did on each task and how well his day went at the end. It reinforces the concept of, “You did awesome!” or, “We need to work on this.” I have tremendous faith in Stephen’s abilities to help Cody be successful. I’m very excited to see the progress that Cody and Stephen have made in only a month, and extremely appreciative of the attention and care Cody’s service provider puts into seeing their clients achieve their given goals. Given what I have seen thus far, I’m rating this program a great, big 10!
I no longer have the best letter I ever received. I let it go earlier this year, because I knew that, even if I threw away the paper itself, I'd never forget the contents.
When it came time for me to choose a college, my choice was simple. Though I visited more than a dozen campuses, the second school I visited was exactly where I wanted to go: Vassar College. I was in love with the library, the lawns, the list of English courses. It also didn't hurt that the school was exactly an hour-and-a-half-long drive from my family in New Jersey. It was just far enough for me to feel like I was truly “away,” and just close enough for me to come home at a moment's notice ... or to flee back to school, as I did one afternoon.
It started out as a routine visit home. As always, I offered to stay with Willie for a time while my parents went out; as usual, they hesitated, but said yes eventually. I assured them that I would be careful, and that I would call them immediately if Willie was having a particularly hard time. Unfortunately, neither of these things prevented what happened next.
I don't remember many details of that afternoon; my memory has blocked them. Or perhaps, having received grace to forgive them, I have also been given grace to forget. In any case, I know that Willie was edgy and upset. I know that I helped him to roll up in the rug, applied calming pressure, and prompted him to take deep breaths. Yet I also know that, as it became clear that he wasn't calming down, I got angry. And scared.
Nowadays, I'm better at keeping calm when Willie is upset—In part thanks to years of practice, and in part because I know that maintaining a peaceful energy is one of the best things I can do to help. But that afternoon, I wasn't prepared.
Willie was rolled up in the rug, and then suddenly, he wasn't. Almost before I knew what was happening, he bit me. He sunk his teeth into my right leg, and I screamed at him. Furious and hurt, I ran upstairs and locked a door behind me. I called my parents to come home, and they did, right away. As soon as I heard the garage door open, I picked up my bags and put them in my car. Though I knew it would upset my parents, I drove—flew—back to Vassar.
Several days later, I received a card in the campus mail. I remember opening it in the busy mailroom area, and then closing it quickly, knowing that if I stopped to read it I would end up crying. I took the card back to my room. Inside, my parents had sent their love, sorrow, and comfort to me … and they had included a letter from Willie as well.
Dear Caroline, the letter said in my brother's best printing, I'm very sorry I bit you. Please forgive me. Love, Willie.
When I saw his handwriting—those distinctive letters, the spots where he'd used White-Out to make everything perfect—I knew I would forgive him. Before I even read his words, I felt the tears pool in my eyes. He had hurt me, but he was still my brother. Somewhere underneath the aggressive behavior, he was still Willie, and I still loved him.
The bruise from the bite took months to heal. Every time I looked at it, I wanted to weep—for all the similar cuts and bruises my parents had incurred, for all the anger and frustration inside Willie that made him strike out. For all the beauty that was hidden behind his terrible behavior.
Nowadays, Willie's doing much better. Each time I see him, I am amazed at how far he's come. And even though my skin tends to scar easily, that fateful bite didn't leave a mark. The letter, however, did.
In a few months, I will be graduating from college. This signifies that I have learned a lot about different subjects, some of which I will need in order to continue working, and some of which I will probably never have to use to any great extent. However, there are some things which none of my college studies have taught me, things I will need to learn in order to live more independently.
I am going to have to learn how to shave by myself. Currently, my father and mother help me shave. I do not have the hand-eye coordination necessary to safely shave with a razor, so I depend on my parents to perform this duty. We are all intent on buying an electric shaver which I will be able to use effectively on my own. My parents have purchased several that have not worked out for me. I need to obtain one which is easy to use and which I can safely manipulate without accidentally cutting myself. If we can find one that works for me, it will be another step toward independence in my life.
I will also need to learn how to do my own taxes and pay my own bills. I do not worry too much about financial matters because my parents currently advise me and help me understand any financial transactions that I make. I learned about taxes in the money management course I took, but I have not yet put what I learned into practice for myself. After I graduate and have more time to devote to these issues, I want to learn all that I can so that I am able to manage my own finances. My parents have assured me that they will continue to help me in this area.
I will need to learn how to maintain my own apartment or house. I have lived with my parents for my entire life, and they have helped me to learn how to do many chores around the house. I can do the laundry, wash the dishes, clean the bathroom, take out the trash, make some of my own food, maintain my bedroom, and do some light cleaning. I go grocery shopping with my parents, but I will also need to learn to do this on my own. My parents are continually teaching me more and more tasks, and I know that in order for me to live independently, I will need to know how to do everything that is entailed in maintaining an apartment or house.
If I do not learn to drive, I will have to learn how to navigate the public transportation that is available in my area or come up with a plan that will enable me to get around on my own. I am sure that with my parents’ help I will be able to come up with a plan of action and carry it out. I have no interest in driving yet, but there may be a time when I feel comfortable giving it a try.
These are just a few issues that I have thought about and know I will have to work on in the coming days. I am sure there will be many new things that I will have to learn along the way and there will be challenges that I must overcome. With the help from my parents and a little bit of time, I know I will be able to make any adjustments that will be needed and make everything work for me. I have to remember that circumstances in my life will always be changing and I need to be willing to adjust and change with them.
Summer’s coming! We may have dodged the extreme snowfall of recent years, but not the planning required to make sure our kids with autism have summer activities—and we have peace of mind.
This year, I am ready. Madison’s camp confirmation first arrived in an email over a month ago, and then in my mailbox. The thick mailing included a summary of the essential paperwork:
Our plans are set—but it has not always been so easy.
For 14 years, I had sent my other children to summer camps where I was surprised to learn that activity is a major adjustment for both child and parent. For a long time, I simply could not imagine it for my Madison.
How would she adjust? Could they take care of her? And that darn, “What if” thinking delayed my actions.
I did make attempts to learn about camp programs. In those pre-Internet days, I followed up on the occasional camp flyers sent home from school. And, I did attend the locally sponsored Special Needs Camp Fair to meet with regional representatives. But, I stopped going after the first year, since most of the camps required the child to be potty trained, a feat Madison didn’t accomplish until she was almost 10. At least she wasn’t a “runner”—very few camps accepted kids who regularly tried to leave the premises.
Finally, after more research, parent networking, and good old-fashioned relentless pursuit, I found a five-day sleepover camp that was highly recommended by another parent. Madison attended and came home unharmed and happy.
I thought all had gone well.
But a few weeks later, with no real explanation, she was kindly asked not to return the next year.
Devastated, I began the search again. I found a couple of local day camps. One, however, was discontinued after its first session. The other was terribly understaffed, even with the addition of a one-on-one I hired to attend with Madison. The program was not structured enough, so Madison’s behaviors escalated—as did my concern.
Finally, I learned about a well-established camp in Catoctin Mountains near Camp David. And the rigorous application process to Camp Greentop began.
The first step was to attend a Visitor’s Day during camp where I met the staff and saw kids at camp in action. I could envision Madison at the lunch table, in the cabin, and in her number one favorite activity—the swimming pool! I met with the director, talked with a mother of a successful camper, and then decided to apply.
The application process revealed even more attention to the details of daily living. After an interview with a program specialist, the application arrived. A skills checklist of activities from dawn to dusk offered a rating of "Independent," "Needs verbal prompts" or "Needs physical assistance." They were speaking my language!
I hoped they would speak Madison’s.
Talking was difficult for Madison. Only after intensive ABA (Applied Behavior Analysis) therapy, did she finally find her words. Even now, at age 19, we teach every word she knows. So her language is highly scripted and sometimes difficult to understand.
To help the staff, I created a "cheat sheet" and called it, "Madison-eze" or "What is she saying?"
"I want skejul, please," means she wants her schedule for the next activities.
"I want dideo, please," means she wants to watch a video.
"I want mummy, please," means she wants to be wrapped tightly in a blanket like a mummy.
And to help staff know how to communicate with Madison, I had sent in another set of tips, “Communicating with Madison,” garnished with a family photo.
Although we were waitlisted the first year, we finally applied early enough and she was accepted. She has been a Camp Greentop camper for the last seven years and now has a new phrase to add to the list, “I want camp, please.”
As always, Madison’s success results in a straight-up learning curve for me. Here are five tips for others in search of a good camp program:
And then, most importantly, put “what if” thinking in its place. Don’t let it rule your life and deprive your child of a wonderful summer experience.
Consider this a warning: There is a certain "ick" factor to this column. As the thought of this column began to blossom within me, I myself was overcome by a certain degree of "ick." How can I possibly write this? If Cameron ever reads this, will he ever recover from the embarrassment? Well, I apologize in advance, to readers and Cameron alike. But for the sake of cutting edge journalism, I will trudge on.
So, Cameron's bedroom is in the finished attic, which puts his bed directly above the master bedroom. (Are you starting to see where I'm going with this?) Occasionally, as I am trying to drift off to sleep, I hear ... certain sounds. Certain creaking sounds. Ewww, right? But the last time I heard this sound, I was like, wait a minute ... Wasn't it last Thursday when I heard that sound? And the Thursday before that? Does Cameron actually have this on his schedule?
Cameron schedules things that most people wouldn't consider schedule worthy. He wears collared shirts on Tuesdays and Fridays. He keeps inventory of his shirts by brand. If he has two shirts of one brand, he rotates wearing each, so that they get equal wear. If one of them must drop out of the rotation, it's a cause for worry. Cameron eats certain things on certain days. During his bus commute to school, he listens to music on his iPod on particular days, and watches videos on the others. I'm sure there's a particular order in which he listens to playlists, but I haven't dared to delve that deeply into his routine. Without fail, whenever I discover one of Cameron's rituals and ask him about it, I'm met with that "Well, duh, of course I do that!" look of his. It all makes perfect sense to him. Doesn't everyone do it his way?
As I start to ponder Cameron's routines, I've started to think about them in terms of skills. (This does not apply to the sounds in the night routine, by the way.) But really, some of these little idiosyncrasies could be conveyed to employable skills. For instance, Cameron is the most punctual person I know. If you tell him to be somewhere at a certain time, he will be there precisely at that time. Employers appreciate that trait, right? And his tendency to create patterns in everything from how he eats to how he dresses means he may thrive in a workplace where what may be considered mundane tasks by some would be completely fulfilling to Cameron. I think (and hope) that some of what makes Cameron unique will benefit him in the workplace one day. I think (and hope) that he will be gainfully employed one day, and be self-sufficient. I think (and hope) more and more employers will start to recognize and value the traits of the ASD population in general, and maybe, just maybe, this group will find employment beyond the end of the check-out lane at the grocery store.
Leave it to a mom to find the bright side of the nighttime activities of her adolescent son.
With the advances in research being made in finding what causes autism, more and more evidence is being discovered that points to genetics as a key factor.
Through the years of witnessing Cody engage in some peculiar behaviors, I used to find it disturbing that I myself have exhibited some of those same behaviors—some in the past, but also some in the present. Did my son’s condition come from me?
Although I think I always knew I suffered from OCD, I wasn’t officially diagnosed with it until I was in my early 40s. I could not go to bed without checking the doors at least five times to make sure they were locked. It was a compulsion to check the burners on the stove at least three times before I left the kitchen when cleaning up after the evening meal. If things are out of place in my house, the anxiety that sets in used to be unbearable. If I came home and the house was in disarray and I was too tired to clean it up, I would spiral into a dark depression. When at work, if I was three cents off on the bank reconciliation I could not stop looking for it until I found it. When looking for my error my mood swung from extreme panic to tearful distress in the beat of a heart.
My doctor prescribed medication that eased my symptoms tremendously. I was finally able to focus and to feel stress-free most of the time. It was during this time that I started noticing how similar some of Cody’s behaviors were to my own.
If he doesn’t have his one special coffee cup in the morning he is troubled until he finds it. If there is someone in our house with whom he is unfamiliar, he is overwhelmed with nervous energy until they are gone. If he is drawing on his computer and something isn’t just right, he will erase it over and over until it looks the way he wants it to look. If he cannot make it right, he becomes frustrated and angry for the next several hours.
Cody and I also exhibit several commonalities in how we cope with stress. Rocking is a form of vestibular stimulation for both of us. It evokes a calm and peaceful feeling for me and it seems as though it does for Cody also. My son and I are both pacers. I notice myself doing it a lot when I’m on the phone. Cody does it when he’s bored. Neither of us stands still very well. In church I often notice we sway from side to side—not enough to be terribly noticeable to others, but yet there is subtle movement, and oh Heaven’s yes, it must be in unison!
It is pretty common for individuals with PDD not to be highly verbal. Cody is no exception to that rule. But is this the nature of the disorder or is it by choice? Though I feel my vocabulary skills are quite adequate, I’m not a big talker. I don’t really do idle chit-chat. Social situations for me are terribly uncomfortable. And when I do talk, I much prefer one on one conversation than a group discussion. And wouldn’t you know it … Cody’s pretty much the same way!
As I said earlier, it used to bother me that I saw the same peculiar traits in my son that I saw in myself. But now it is something I embrace. Who is to really say that just because one possesses a particular behavior that is different from the neurotypical population that it meets the criteria as a negative behavior? Is it so terrible that my son has a favorite coffee cup or that I am most at peace with myself if my house is clean? Neither my son nor I are what society would classify as social butterflies. So should we be stereotyped as strange because we both prefer the more intimate interaction of one on one conversing rather than large gatherings where conversation takes place in increments instead of whole dialogue? If so, who is it that made the rule that everyone must maintain the status of what society deems as socially normal? I would like to encourage them to consider the possibility that it may be high time the rules were changed.
If you've seen the movie “Good Will Hunting,” then you know about the farting scene. It's the scene in which Robin Williams’ character is telling Matt Damon's character about his late, beloved wife. He doesn’t talk about her accomplishments; instead, he remembers her quirks. She farted in her sleep, he says, and once she farted so loudly that she woke herself up. The two men can't stop laughing at the thought.
I had that scene playing in my mind as I sat down to write this morning. For some reason, I wasn't thinking about my brother Willie's accomplishments (though I celebrate them) or his gift for music (though I'm so proud of his talent). Instead, I was thinking about the strange, funny moments that only our family knows about. I was thinking about Willie's wonderful, individual quirks.
I was thinking about how Willie used to ski, before he mastered the art of turning. When we were younger, our parents would take us skiing each winter. Willie would ride on the chairlift, disembark, and then he would fly. Pointing his skis parallel, he'd simply accelerate, zooming down the trail until he came (or tumbled) to a stop at the entrance to the ski lodge. He was surprisingly good at this unconventional method. Unlike me, he wasn't terrified of picking up so much speed. Sometimes I'd try to ski alongside him, both of us shooting like bullets down the mountain. I only made it the whole way a few times, but Willie made it every time.
I was thinking about how, on those same ski trips, we'd take our sore, tired bodies out to restaurants for supper. Even though Willie always ordered familiar dishes—spaghetti, fries, hamburgers—the food's presentation would be different from what he knew and recognized.
Once, when Willie's order of chicken fingers arrived at our table, he didn't eat, but simply stared down at them. Willie loved having chicken nuggets at home, yet we all noticed he wasn't eating his food. Puzzled, my parents encouraged him to explain why. His face furrowed in concentration; I could see the mental wheels turning. How to explain this sudden aversion to his supper? Finally, he spoke up. In a plaintive tone, he said, “I'm sorry, bananas!”
We burst out laughing, as the problem became clear in an instant. The chicken fingers were longer and thinner than the chicken nuggets Willie was used to, and as such, he just didn't know how to place them in his mind. To him, the chicken fingers looked like … well, breaded and fried bananas.
Another time, Willie ordered spaghetti and meatballs, a perennial favorite. But when his plate came, he once again stared down at it without eating. When prompted to explain, he said, with a tinge of horror in his voice, “It's still growing!” That's right: The unfamiliar sight of parsley sprinkled over the meatballs made it look like they'd sprung up from the earth, and Willie was dismayed at the prospect of ingesting them!
When I miss my brother, these are the small stories that make me smile. I miss his sense of humor, because it helps me to have a greater openness, a sense that life isn't always what it seems. True, learning to look at the world through Willie's lens of perception can be a challenge, but it can also be a delight. I haven't always appreciated that as much as I do now. I used to long for a “normal” family. Yet even then, there was a deep-down part of me that knew: Normal wouldn't have been nearly as much fun. And it's the lessons learned in laughter that stay with me now.
Thus, when Robin Williams' character says:
“... that's [what] I remember: wonderful stuff, you know? Little things like that. Those are the things I miss the most. The little idiosyncrasies that only I know about. ... People call these things imperfections, but they’re not. Ah, that's the good stuff.”
I can't help but agree wholeheartedly. That's the good stuff. And, lucky for me it's still growing.
In order to prevent welfare-reducing effluvia, we ask you to please reduce externalities (bathe) during exams.”
I walked into my graduate school classroom one fine evening to find that on the blackboard.
Oh no—not again!
Back then, I wasn't showering—or doing laundry—on a regular basis. In fact, I hadn't been since before I can remember. I knew that I had a “B.O. Problem.” I also knew that it was driving people away from me. And yes, I knew it was inconsiderate of me to expose others to that kind of smell.
All in the same sense that pretty much everybody knows that smoking, scarfing down double cheeseburgers and chocolate doughnuts and never exercising are all Bad Ideas. If you know a healthy person, you know someone who doesn't stop with knowing the right things. Doing them kind of helps.
You might be wondering: “Jeff, couldn't you smell yourself?” Unless I'd been dirty for a really long time—as in weeks—no. Like many Aspies, I have a very weak sense of smell. (For example, when I was a child, for a short time the local grocery store unknowingly sold spoiled cottage cheese. Unlike many other people, I didn't know it in time—and for years afterward I had a habit of carefully sniffing everything before I ate it.)
And if you were one of those people who had the bad luck to be downwind of me, you probably wanted to ask “Jeff, <cough> couldn't you <cough> <cough> get around to jumping in the shower—or didn't you care?” Well, no I didn't care … not so much because I hated society or anything like that but rather because I was clinically depressed. And that meant it took a lot out of me some days just to get up and get on with my day. Making a daily or even semi-weekly appointment with Mr. Shower and Ms. Soap was beyond me sometimes.
Depression, as you might have heard, is a common co-morbidity of AS. You see, when you go through life wondering when, not if, you will tick somebody off enough so they scream at you or worse, losing job after job, having no friends and certainly no dates, depression is a common result. (Not to mention a common cause of same—especially when it entails an “H2O allergy.”)
Last but not least, not having any friends meant not having anyone close to me to notice I smelled like high heaven and call me out on it before it became a public scandal.
So, in a nutshell, it just didn't occur to me that often that I needed to shower and wash.
Of course, all of the above may be reasons—but still no excuses. Barring some kind of extreme medical condition, if you're not a hermit personal hygiene is not optional. It's a matter of basic consideration for others. (Conversely, it would also have been considerate—and much more productive—if under those circumstances someone had approached me privately instead of making passive-aggressive public announcements.)
Many aspects of AS are like this. Being an Aspie often means doing certain things that really annoy others. And being a human means that once you know what the problem is, you do everything you reasonably can to reduce these annoyances. That's not just a matter of being nice—it also really helps you make friends, find good jobs and even get dates.
PS: I've now been regularly showering for nearly 20 years!
In the past couple of weeks, I have spent more than what could be considered a normal amount of time focused on appearances. Beauty comes from the inside out, or so I’ve been told, right? And yet we all seem to gravitate in one form or another towards what we look like on the outside, and that gravitational pull takes many forms. For example, there seems to be a consensus of sorts that people with ASD have a general lack of concern about how they appear to others. From my own experience, I don’t quite know if I would characterize this as a lack of concern so much as a lack of prioritizing. I know that I get positive feedback on my appearance when I am wearing makeup. I enjoy positive feedback. But more often than not, I don’t wear makeup. It is not a priority for me in the mornings to take the time that could be spent in other productive pursuits—yes, sleep counts—to go through the whole production of putting on makeup. I care about how my appearance affects others’ perceptions of me. That said, I do not quite care enough to concern myself with keeping track of whether or not the mascara in the bathroom is too old for me to use when I dig it out for special occasions. This gravitational pull towards a more natural look does not appear to have hampered me in the workplace setting, and as such I feel comfortable assuming that I am correct when I tell myself that "less is more."
Conversely, there are individuals who will go to great lengths to create an outward appearance that on the surface seems to be for no other reason than to provoke a decidedly negative reaction. This presents problems for the educator in me, not to mention the Aspie in me, on numerous levels. The teacher cannot allow students to present themselves in the workplace in a manner which is likely to prompt an unfavorable reaction. In addition, I am working with young adults who, let’s face it, probably have the deck stacked against them in the first place with or without a disability simply by nature of the economic times in which they are coming of age. Certainly it is in their best interests to present themselves in such a way that those who will undoubtedly make judgments based on outward appearances will have reason to make those judgments favorable ones. But … here’s where the Aspie part gives me pause. What do I want more for my students? For them to “fit in” based on outward appearances if nothing else? Or for them to feel at home in their own skin and be secure enough in their perceptions of themselves to not worry or even care what other people think of the way they look? After all, beauty comes from the inside out, so why should it matter how many earrings someone chooses to wear, or what color or style their hair is? I find it more than a bit challenging to argue the point that the rules are the rules (written or unwritten) and we have to follow them.
Beyond hairstyles and whether or not wearing a particularly garish eye shadow is the best life choice, I would feel remiss at this point if I did not tie all of this together with a mention of the potential consequences of overemphasizing the imporance of physical appearance to our young people with AS: This is National Eating Disorders Awareness Week, In 2007, Asperger’s syndrome expert Tony Attwood reported that between 18 and 23 percent of teenage anorexics meet some or all of the diagnostic criteria for Asperger’s syndrome. That is a staggeringly high statistic, and one more reason we need to be teaching—dare I say, embedding—in our young people the idea that beauty truly comes from the inside out.
If you are concerned that your child or student is struggling with an eating disorder, do not be afraid to act. Eating disorders have the highest mortality rate of any psychological illness. In an individual on the autism spectrum, it may be hard to distinguish food selectivity and rituals that stem from the autistic characteristics from those of an ED. Some of the indicators that your child/student (most ED suffers are female, but the disease is NOT exclusive to girls) may have and eating disorder include:
There may not be a noticeable change in body weight. Just as there is no “typical” autistic person, there is no typical anorexic, bulimic or compulsive eater, and many individuals with eating disorders demonstrate a variety of symptoms that encompass all of these classifications. If your suspicions are correct, please remember that eating disorders are NOT a choice, but a mental illness that can have dire physical complications if left untreated. Please do not be afraid of alienating your child or student by acting on your concerns, as you could very well be helping to save her life.
I'm sitting in an airport with my husband, but no children. We're jetting off to the Bahamas for a "work" function, thanks to my husband's employer. It's always bittersweet when my husband and I take the rare trip without the children. For some reason, my thoughts always tend to go towards "What would happen to the children if this plane goes down?" Call me morbid, but it seems I'm the one with separation anxiety, and not the children. Call me a control freak, but I can't imagine what Cameron's future would look like without me there to help him along. Cameron is no mama's boy, and he is certainly showing signs of being able to take care of himself, but who better to make sure he's on the right track than me?
Cameron will be 17 years old in a month's time. (Yikes!) One of the Transition issues I need to start paying attention to is guardianship. How do I make the assessment of whether or not guardianship is in Cameron's best interest? What if I retain guardianship and something happens to me? How do I even begin to impart my intentions for Cameron to a subsequent guardian if I were to meet an untimely death when I don't even know my intentions? I'm sure if I'm alive and kicking I will make the right decisions as they come along because I'm his mother, and Mother knows best. How do I convey those on-the-fly decisions if the unthinkable happens? Should I stipulate in my will that a Ouija Board be consulted for all Cameron's life decisions, and I will reach out from the afterlife? Hmmm ... maybe I should consult a Ouija Board for some of these answers now.
It seems the more I try and get a handle on Cameron's future, the more slippery the handle becomes. And the more I try to learn from other people's experiences, the more vast the differences appear to be between Cameron and everyone else. Even as I read my colleagues' columns here, I see vast differences in experience. While Cameron will never write an eloquent piece on what it's like to be him, he has also never had issues stemming from aggression, elopement, or being nonverbal. There is, however, a common set of hurdles that we all must navigate. Honestly, I don't know that the issue of guardianship would have entered my mind were it not triggered by my association with Autism After 16. Even though I may not have all the answers, it is a step in the right direction to know the questions.
I'm no closer to deciding what to do about guardianship for Cameron in my lifetime and beyond, but I have arrived safely in the Bahamas since beginning this column. Two more days, and two short flights home, and I will have survived another trip without my children. Guardianship research is on the top of my to-do list when I get home. It will be so nice to travel on our next trip without this hanging over my head.
At Age 16
At Age 17
One Year Before High School Graduation
At Age 21
All Along the Way
Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.—Ralph Waldo Emerson
A child-like man is not a man whose development has been arrested; on the contrary, he is a man who has given himself a chance of continuing to develop long after most adults have muffled themselves in the cocoon of middle-aged habit and convention.—Aldous Huxley
Seemingly overnight, Ritalin gained a permanent place in the classroom, becoming as common as book bags and sack lunches. My pediatrician informed my parents that I had “the worst case of ADHD he had ever seen.” In a time when Asperger’s syndrome was not yet widely recognized, I was truly a puzzling little terror. However, without a proper label, my eccentricities remained natural and unspoiled, unique personal characteristics rather than symptoms. As ADHD diagnosis rates rose at an alarming pace, that particular label began to lose credibility among teachers and parents. There were no special services available for “another kid with ADHD,” even if I was a shockingly severe case.
I struggled socially and academically. Though undeniably precocious, I couldn’t seem to manage even my elementary school workload. I was universally regarded as a defiant troublemaker, a class clown with the bright, anarchic energy of Groucho Marx. Matters were not improved by the fact that I was typically smarter than my own teachers. A hyperactive, pint-sized encyclopedia constantly disrupting the classroom, correcting adults, and failing to turn in homework, I was not a welcome sight filing into school on Monday morning.
This pattern continued well into my adolescence. However, my teenage years proved especially difficult, as I was suddenly faced with pressures and expectations that far surpassed any previous challenges. Peer interaction received a hormone injection. It was time to learn to drive. I was expected to balance multiple classes and teachers, keep track of my schedule, books, and due dates, and avoid the scorn taunting of my peers whenever possible. My natural surplus of energy, constant anxiety, impulsiveness, and obsessive focus combined with these more typical teenage issues to make life virtually unbearable. I have never considered myself to be disabled, but I will say without the slightest hesitation that I am certainly developmentally delayed.
Lacking the Asperger’s diagnosis, I frequently used a creative, if medically shaky excuse for my eccentricity and developmental failure: “Sorry, I have a life-threatening case of ADHD…”
Now that I’ve been diagnosed with Autism Spectrum Disorder, I often struggle to separate the ADHD from the autism. I find the genetic and diagnostic overlap to be both confusing and intriguing. My mother, father, and sister have all been diagnosed with ADHD. We share many symptoms, though the untrained eye would likely fail to find similarities. My sister struggles with anxiety, inattentiveness, and mild sensory issues. Before psychotropic medication, my mother had as many fidgety little stims as I do, shaking her leg so forcefully whenever seated that strangers nearby suspected a low-intensity earthquake. My father shares my longwinded single-mindedness. When these “ADHD traits” combine within me, I am told that they are symptoms of autism. But where do we draw the line?
According to Andy Shih, Vice-President of Scientific Affairs at Autism Speaks, “… genetic changes seen in children with ADHD often involve the same genes that are associated with autism. This finding helps explain why children with autism often have ADHD symptoms. In other words, if these disorders share a genetic risk factor, it’s logical that they often occur in the same individuals. Genetic insights, in turn, can help scientists understand underlying causes and, so, may improve how we diagnose and treat these issues.”
I’ve learned that labels are only useful if they facilitate access to special services. Regardless of the label applied to the wonderful, neurological freeway pileup that is my brain, it is the symptoms which must be treated. When I finally learned to target my symptoms and apply the correct pharmaceutical and behavioral interventions, I suddenly found myself enjoying tremendous success. Rarely is any neurological condition entirely positive or negative. The idea is to identify both the beneficial and detrimental elements, and emphasize the positive while reducing the negative.
Whether I have autism, Asperger’s, ADHD or mad cow disease, I’m still me. I’ve been misjudged and misunderstood—that’s okay, because now I know myself. I embrace my strengths, and unashamedly admit my weaknesses. Closed mouths don’t get fed. I may struggle greatly to perform many seemingly simple tasks, but with minimal effort, I can also accomplish things others would never dream of. I can’t drive or remember my own address, yet despite being chronically forgetful, I’m somehow capable of memorizing enormous quantities of facts and statistics without breaking a mental sweat. Detailed trivia pours out of my mouth whenever it is open … yet I often get lost in the grocery store.
I take daily doses of stimulants (mixed amphetamine salts, dextroamphetamine, or methamphetamine) and while I’m reluctant to credit all my success to drugs, I do know that my life has been utterly transformed since the addition of these medications. I’ve found the motivation, confidence, and executive functioning necessary to fulfill my potential. I still struggle, but my efforts are finally rewarded with personal and professional growth. Working tirelessly only to disappoint yourself and all those around you is no way to live.
ADHD once threatened my life. Now I’m not even certain that I have ADHD. Furthermore, I don’t care. I am who I am. A rose by any other name … would be just as brilliant, bizarre, and hyperactive!
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!
I’ve come down with an early case of the “Bah Humbugs” this year.
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By the time you read this, I will have returned from a week’s vacation in Florida with my family.
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