I found myself taking a dose of my own medicine last week. During my stint as an Independent Living Skills Instructor, I often found myself grumbling about parents undermining my best-placed intentions. While slipping their children an extra $20 for pocket money may have seemed harmless, it undermined my ability to teach about living on a budget. A quick tidying of the apartment as they drop off their student after a weekend visit may be second nature to some parents, but to the staff member trying to assess behavior change from week to week, these innate parental actions can be a real hindrance. And yet last week, I found myself dangerously close to becoming one of those parents that interferes with a staff’s well-laid plan.
Cameron’s school has a new teacher coordinating internships this year. She has quickly been able to implement some improvements over last year’s program. For instance, instead of going to the job each school day, interns now spend Mondays and Fridays in the classroom learning valuable skills like interviewing and resume writing. Interns will be participating in mock interviews in which various faculty members interview the interns in an office setting. Interns are expected to wear appropriate attire for the interviews. In my mind, this is all really good stuff.
But when I received an email from the internship coordinator, asking that I please remind Cameron to bring long pants on the days when he works in the restaurant—and by the way, restaurant interns are asked to refrain from eating during working hours, so I should please remind Cameron of this as well—I found myself bristling a bit. Somehow Mama Bear instincts kicked in and I started mentally forming a list of counterpoints to these internship rules: 1) Cameron has worked in this restaurant in the past, and wearing shorts to work wasn’t a problem before; 2) Cameron’s main motivation for going to work is the promise of free food; 3) If Cameron is expected to decline food while on the job, how am I supposed to enforce this?... And so the list of my concerns began.
But then I stopped, and took a deep breath. Cameron will have many jobs and many bosses in the course of his lifetime. And with those many jobs and many bosses will likely go many different sets of rules. Shaking things up a bit within the confines of a familiar internship is definitely a good thing. Cameron may not like it at first, but just like eating his vegetables, he will learn to get through it and do what is expected of him. This type of pushback is good for Cameron. It is why, after all, I was so determined that he find paid employment. When someone is paying you to do a job, you are held accountable for doing your tasks. An unpaid intern is, in my mind, easier to forgive, and therefore may not be held to the same level of accountability. So in spite of my maternal instinct to make things easier for Cameron, I’m glad that I thought better of making those excuses for him. And I’m sure Cameron’s teacher is glad I thought better of it too.
I recently read about a 5-year-old autistic boy who lives very close to me in New Jersey being denied lunch at his school because his parents were late with his meal payments. The article sent me into an annoyed state that I couldn’t shake. I’m not even sure why I reacted in the way that I did, but it was something that I didn’t take lightly. When I was about this boy’s age my mother joined the Jersey City Board of Education to help with the Special Education Department so I wouldn’t have to go through similar struggles. In my case it wasn’t about lunch like this boy, but it was that I missed 76 sessions of my occupational therapy which was discontinued because the therapists in the schools decided they didn’t like going into what they perceived was a “bad neighborhood.”
The school told my mother if she cared about me she would take me to a local hospital for the services I should have gotten in school. They got about the same reaction from my mom that the parents of this boy had over not giving their son lunch. She finally reached a compromise where they offered to give me compensatory services, but she turned that down because they only offered me the services not the rest of the kids in my multi-handicapped class. A year later she won the election for school board by one vote. Over 16 years later, my mom is in her sixth term and has 680 students on the autism spectrum in her school system. If that little boy attended her schools they would have to answer to her. Her school system’s occupational therapists are among the best in the state, and they are using applied technology and iPads in their high school classes to improve the communication skills of autistic students.
One trait autistic individuals struggle with throughout our lives is the ability to understand what common sense means. We sometimes can be gullible, naïve, and not aware of the world around us. For this reason, I wish many times that adults who care for autistic individuals would use a higher sense of urgency when it comes to the safety of our community. While autistic people may struggle with common sense, it would be great if people around us who supposedly have it would use it!
I spoke to a mother recently who pleaded that cameras be put in her autistic son’s classrooms because she firmly believed that he was being abused. Because her son is nonverbal, it is hard for him to communicate exactly what has happened to him except by the bruises he displayed which could not have been self-inflicted. Whether it is unnecessary restraint or something else, autistic children who cannot speak are at a distinct disadvantage in the school systems and need our protection.
So why did the story of the boy who was denied lunch make me so angry? What buttons did this story push in me? Much of the work I do is with parents and grandparents of young children who want to know that their son or daughter will be OK. They rely on my experiences to help them be hopeful. Whatever the level of communication their loved one is capable of they want me to use my voice to tell them what growing up with autism is like.
That’s where my anger—almost my rage—comes in. How dare they add one more problem for this little boy who has so much else to endure every day in the schools? How dare someone tell my mother, who spent a tremendous amount of time dragging me to doctors, neurologists, and therapists that she didn’t care about me when, in fact, she had the courage to tell the schools to be accountable, to do their job, to protect me, to protect children like this little boy, and all the others like him? With the staggering statistics of 1 in 88, where is the accountability for providing services to our growing population? While most people in our community are committed, caring individuals, how do we deal with the uncaring, reckless and dangerous ones?
How do we protect our children so when they are 24 years old like I am, a story about a little boy missing his lunch doesn’t set off a wave of angry memories buried deep inside and a need to protect all of the young ones in our community from senseless acts of cruelty?
I spend a lot of my time spreading optimism and hope in our community but sometimes I just have to shake my head and say that the reality is we still have a long way to go.
When I saw my brother Willie fling his bicycle down onto the lawn, I knew that we were in big trouble. My husband and I had arrived in South Carolina for a family vacation the night before, and already my fear was realized: Willie was having a meltdown. When I looked at my parents, I could see the tension on their faces; it was the same strain I felt on my own. When Willie had started getting agitated, my parents sent him on a bike ride with Dad accompanying him. On the ride, Willie bit himself in the upper arm, hard enough to leave a massive bruise. Hurling his bike to the ground outside our unit was the grand finale. Willie hadn't harmed anyone but himself, and he was beginning to de-escalate by the time he re-entered our unit.
I'd been writing in my journal before Willie and Dad had returned from their ride. Though I tried to turn my mind to other topics, my hand seemed to move across the page of its own volition. I wrote, “It's scary that, in the time it takes for me to write a single sentence, the situation with Willie could change completely.” As I wrote, my parents puzzled over the trigger point from this latest “crash”; I thought about it too. And, not for the first time, I wished we could have had a professional, competent, and caring third party—say, an expert behavioral therapist—on hand to help us assess what had happened with Willie. But there was no such therapist present; there was just us. We are Willie's family and we love him, but sometimes we aren't sure how best to help him. And at times, the weight of our collective uncertainty seems unbearable.
After Willie's meltdown, uneasiness lingered in the air. Then, as though on cue, I received an unexpected message from a friend, one who'd been generous enough to take care of our kitten while we were in South Carolina. The kindly-worded text revealed that our cat had fleas—a problem that hadn't been evident before our departure—and that she'd need treatment immediately. (All I could do was apologize profusely, and give consent for the kitten to receive a bath.) Having received that message, I walked out the back door to the deck to take some deep breaths. Instead, I started crying. I felt so powerless, so unable to mitigate either of the troubling situations before me. As I sat overlooking a small lagoon, it was tempting to “end” the story there. It was tempting to pass judgment on the entire vacation based on that first rocky morning. However, as I dried the tears from my cheeks, I made the radical decision not to judge Willie for melting down, nor myself for ignorance of our cat's fleas. With considerable effort, I decided to keep my heart open.
Slowly, the tide began to turn. After that first difficult morning, we started building good memories together. When Willie calmed down, I sat with him and worked on a Disney puzzle; it helped us both to do something as simple as putting the pieces together. Later, he read to me from his French illustrated dictionary, and I marveled at his authentic-sounding accent. We went on a bike ride together, and played in the surf as well. And on the last morning of our trip, just as my husband and I were about to say goodbye and start our journey back to Alabama, I bounced over to my brother and asked if we could take an arms-length photo.
When Willie poses for pictures, my parents and I struggle to get authentic smiles from him. It's rare that we're able to get a good shot, but somehow, that morning, I knew just what to do. With one arm wrapped around Willie and one arm holding the camera, I said, “Smile!” just as I reached over and tickled him on his side. The result? My favorite picture of my younger brother … one that reminds me that there is beauty on the other side of suffering. And that, today, is my reason to smile.
In my previous column, I mentioned that I had recently bought some books about job interviews which I was going to look through to acquire some vital information on the best method for conducting myself during an interview. After reading through some of this material, though, I now realize that there is much more I need to be concerned with in terms of my preparation. I find myself completely rethinking my original approach to handling the interview process.
One of the things the authors and I agree on is that it is ultimately advantageous to the interviewee to be honest. If something appears on my resume that the interviewer wants to know more about, I need to be able to back up what has been written with related facts and details. I had assumed that honesty would play a significant role in a job interview even before I had seriously considered what I would do during an interview, and I was delighted to find that this assumption was well-founded.
The interviewee must also make great compromises in some respects, however. If certain experiences, viewpoints, skills, or habits are not appropriate for the position or do not reflect the company’s ideals, they should be left unspoken or de-emphasized in favor of aspects which are more suited to the position or company. “Little white lies” are never permissible, but I was surprised to learn that being selective with what truths one emphasizes is considered vital to an interviewee. I would be quick to add that any negative traits should be corrected or abandoned in order to become more productive and valuable to the employer, but I was surprised that this was not emphasized more strongly in my reading material.
Another trait recommended is a strong dedication to the company with which you are employed, and it is repeatedly emphasized that the answers you give during an interview should reflect interest in the company and its operations. The examples given in my reading material seem to indicate that you should display a willingness to pour your heart and soul into working for the company that has hired you. I already have a full understanding of this particular point because I feel this kind of loyalty every time I write a column for this publication. I try to write about each subject I am covering fully and coherently, and I submit each column within my deadline for publication. I know that I have a responsibility toward you, the reader, and to this publication.
An additional trait which the materials state is considered highly desirable by virtually all employers is the ability to cooperate with one’s co-workers. In addition to the obvious need for teamwork, the interviewee should demonstrate a willingness to take on extra work should another co-worker encounter illness or another complication which prevents him or her from working. I recognize the value of such skills because I experienced their usefulness firsthand during a team project in one of my college classes. Some of the team members had other obligations which occasionally prevented them from participating in the project in a timely manner. On these occasions, the other team members and I stepped up and pitched in to keep the project moving. We eventually completed the project and submitted it before it was due.
I noticed that many of the examples for good answers during an interview were of such a nature that a large amount of work experience was used to relay how a person could be of value to the new company. I do not have a lot of work-related experience to draw upon, however, so I was also glad to learn that there were a number of education-related examples I could draw from. These took the form of anecdotes about classes and other academic experiences which demonstrated key assets employers look for. As I looked over these examples, I was relieved to know that I could utilize my own college experiences to help me through the interview process.
In my research, I have come to realize that job interviews can serve as a self-evaluation of one’s character and ability to work effectively. I plan on going to a local job fair at the end of the month to learn more about job interviews and hopefully obtain some more material on effectively preparing for interviews. I want to make sure I have all of my bases covered.
As I continue my efforts researching how to prepare for any future job interviews, I hope to address problem areas and accentuate others that I have already mastered. I know I have more to learn and more steps to complete such as practice interviews and more effective communication skills. I want to be able to present myself as a potential employee an interviewer could trust and a valuable asset to any company. I think a good performance in a job interview can also reflect a well-balanced skill set in which one is prepared for anything, so I will strive to do my best.
“Something’s wrong,” the camp nurse says on the phone.
Our 20-year-old son Mickey had left for sleep-away camp eight days earlier. He’d been happy and healthy. But for the past two days, she reports, he has been lethargic. Not eating. Throwing up. Telling them his side hurts.
“We’ll meet you at the hospital,” I say. My husband Marc and I fly up the highway. “Did you bring a copy of the guardianship papers?” I ask him. I don’t want anyone challenging us about our right to make medical decisions for our adult son.
“Where they always are. In my wallet.”
Mickey must be so scared, I think. I picture raucous scenes from television medical dramas. Screeching ambulances. Crash carts. People shouting. Emergency rooms can be frightening for anyone, let alone someone with sensory and communication issues. We burst through the hospital doors, and find Mickey on a gurney. “Hey Mom. Hey Dad.” He sounds surprisingly chipper. “I was throwing up.”
The doctor on call introduces himself and motions us down the hall. “The good news is that it’s not an intestinal blockage.” He points to a round blob on the computer screen. “But that is a kidney stone.”
“Wow,” I breathe. “That’s supposed to be incredibly painful.”
“Yes,” he agrees. “I’m surprised he’s not writhing in pain. If I had a stone that size I’d be doubled over.”
The nurse appears. I like that she speaks directly to Mickey instead of us. “I need to run an IV line,” she tells him. “It won’t hurt, just one little stick and it’s done.”
Mickey balks. “No stick!”
I tense, remembering how Mickey had once slugged a doctor who’d tried to give him a shot.
“Honey, this way they only have to stick you once,” I tell him. “Then they can do a blood test and give you medicine to take the hurt away. Here, squeeze my hand. Don’t look.”
Still, he yowls, watching the needle penetrate his arm. “The faster we do this, the sooner we take you home,” Marc reminds him.
Testing shows he is dehydrated. The nurse sets up a saline drip, adding a pain killer and anti-nausea medication. Two saline bags and several hours later, the doctor says he feels comfortable discharging him. “But it’s not over,” he cautions. “You’ll need to follow up with your doctor tomorrow.”
At home that night between bouts of nausea and heaving, Mickey asks plaintively, “Am I going to die?”
The next day our pediatrician sends us to a urologist. We sit in a crowded waiting room nearly two hours as Mickey grows increasingly belligerent: “No doctor! I’m out of here!” A pretty nurse appears; Mickey perks up. “What’s your name?” he asks. She directs us into the doctor’s office; finally, a tall man strides in. Mickey lights up with excitement. “You look like my rabbi!”
The doctor smiles. “But I give shorter sermons.” He bends over a microscope. “There’s blood in his urine and he’s still dehydrated. Mickey, how are you feeling?”
“Great!” Mickey says cheerfully.
People with autism don’t always show typical pain behavior, I remind myself. I remember a summer day long ago; Mickey a sturdy 3-year-old, had been running happily down a concrete path when he’d tripped. I’d run to pick him up; his legs and arms were scraped raw. Most kids would have been shrieking. But Mickey merely brushed away the gravel embedded in his knees, and resumed running. He seemed stoic even when he had three wisdom teeth extracted. When he says something hurts, we know it must be bad.
And this is bad. Despite heating pads and medications to ease the pain and help the stone pass. All week he is rocked by waves of nausea and retching. Yet only once does he say plaintively, “Make the hurt go away.” Is there anything worse than seeing your child in pain and feeling helpless to relieve it?
“The more water you drink, the faster the kidney stone will come out,” we tell him repeatedly. One evening I hear him in the bathroom, forcing himself to burp again and again. “What are you doing?”
He puts a hand to his throat. “Getting rid of the stone.”
“It can’t come out that way,” I say. “It will come out when you pee.”
“Be on the lookout for that stone,” the urologist’s nurse reminds us. “It could be the size of a grain of sand. Or even a tiny pebble.”
Finally, two days before he is due to have a procedure to blast the stone with shock waves, we catch a fragment that looks like a flax seed in the mesh strainer they’ve given us. We bring it to the doctor. He sends us for another X-ray. The stone in the ureter is no longer visible.
“This could have been so much worse,” Marc and I reassure each other. Mickey has been a trooper through the ordeal; as always, he is resilient. It is over—for now.
Except that there is another small stone floating in his kidney that we will need to monitor.
But lurking beneath our brave fronts is the fear that never goes away. Someday he will live apart from us; who else will ever watch him as vigilantly? Recognize when he is in pain? Know how best to reassure and comfort him? Advocate for him?
Who will love him, when we are gone?
Last Friday night was Cameron’s first evening of paid employment with Angelico’s Pizzeria. On Thursday night, while Cameron was setting the table for dinner he said, “I’m really excited about tomorrow.”
Just because I can’t leave well enough alone, I had to go and (inadvertently) burst that bubble of enthusiasm by saying, “You know, now that you’re being paid to work there, they may expect you to pay for your food.” The look on his face was not unlike the time I told him that his gifts from Santa were really my doing. (For the record, Cameron was well into his high school years when I broke the news.)
Cameron’s reaction to the end of the free food made me wonder what his true motivations were for being excited about going to work. I wondered if he really got what this whole process was all about. When he came home Friday night, he reported that he did in fact have to pay for his pizza (good thing I gave him the heads up on that one, and spared his manager the “end of Santa Claus” face). He didn’t get to eat until 9:00 p.m. because the restaurant was so busy, but there was no complaining about the late dinner. In addition to his regular tasks of washing dishes and clearing tables, he got to put mushrooms in a barrel, and the gloves he wore for this task were apparently really cool. I asked if his job coach had been there, and indeed she had, but she did not need to stay for his entire shift. So despite having to pay nearly half of his evening’s wages for his dinner, I’d say it was an overall positive experience for Cameron.
The next morning, we were both in the kitchen getting breakfast, and I was muttering about pouring too much milk in my coffee mug and putting the wrong thing in the microwave. I could tell Cameron wanted to say something about my ineptitude, so I gave him free rein to say whatever he clearly was holding back. He grinned as he said, “There’s something wrong with your head.”
I responded by giving him a flick, and said, “Now there’s something wrong with your head. And yes, I’m a little forgetful so you’ll have your work cut out for you when you have to take care of me when I’m old. And you will take care of me, won’t you?”
Cameron didn’t seem to struggle with what I was asking of him when he said, “Yeah … if I have time ... I mean, yeah.”
I really like the fact that Cameron sees a future where he’ll have to work it in to his schedule to make time for his dear old mom. Sometimes it may come across as if I’m the one driving Cameron’s future. But in reality, Cameron is in the driver’s seat, and I’m just holding the map. I have no doubt now that Cameron’s excited anticipation about work was only partially due to the sausage pizza he had in mind for dinner. When Cameron first stated that his life dream was to own a pizza restaurant, I thought it not unlike a young child dreaming of being a rock star. I imagined reality would eventually hit, and he’d find another dream to pursue. But as this young man of mine begins to mature, I’m starting to see his determination, and I’m beginning to believe he may just make his own dream come true. When it comes to pizza, Cameron has a lot more on his mind that just eating it.
Over the weekend, we received some wonderful news. Stephen is back in town!
For those of you who don’t know who he is, Stephen was Cody’s first Occupational Tech with our current agency and he is awesome! He left the States for a while to do some mission work, but now he has returned and started back with Cody yesterday. We are very happy!
This might bring up the question of how this is conducive to acclimating Cody to change. That was one of our key goals—to help Cody cope with everyday surprises that arise throughout life without having a meltdown. Since Cody and Stephen know each other and get along so well, one might be persuaded to believe that this situation is more like handing Cody a security blanket than asking him to step outside his comfort zone. But it’s not and I’ll explain why.
First and foremost, I think this is a clear example of how change comes to everyone’s life. Stephen had planned on being gone for a much longer period of time. But as it worked out, he wasn’t. It wasn’t what Stephen had planned. But he had to deal with it.
Secondly, Cody had become at ease with having someone else in Stephen’s place. Now Stephen is back, so it shows Cody that even though someone may be gone from his life for a time, it doesn’t mean they will never return to his life.
Cody will need to return to Stephen’s ways of implementing his care plan. Stephen’s ways are typically more challenging than those of the other Techs that Cody has encountered. He knows Stephen and Stephen knows him. But for a time, Cody was able to avoid having to do some necessary tasks to help him learn because the others were not accustomed to standing as firm as Stephen does. Stephen pushes Cody more to try new things and to work on skills that Cody finds less pleasant—such as learning correct spellings for words in his writing, or making his bed, or the task he dreads probably most of all: cleaning his bathroom.
The upside of this change in demand, however, is that Cody is now more richly rewarded for completing those arduous chores. This is also a change from what he has been accustomed to since Stephen has been away. Since Stephen knows Cody better than other support workers, the two of them can go to the places Cody most enjoys on their outings.
I also feel more at ease about leaving plans behind, because I know I can count on Stephen to follow through. For example, Cody sometimes gets into a rut of wanting the same thing for lunch every day. Lately it has been tomato soup. So, I’m going to start incorporating simple but fun recipes for them to make for snacks and lunches. Today I’m going to have them make snack cracker sandwiches. With Stephen’s help, Cody will be responsible for following the directions and completing the recipe to make lunch for the two of them.
I can also feel more at ease that Cody will be fine with other changes I wish to incorporate into his plan. Learning where cities are on a map will be one of them. With Stephen’s help he will locate certain cities and their states. As time goes on perhaps he can learn more about what kind of life that city has to offer.
Cody has also not been interested in much physical activity since Stephen left. Now, that will no longer be the case. As I write this, Cody and Stephen are off to play basketball at the recreation center nearby. The weather outside is getting cooler so it will be nice for them to take walks out in the fresh air again. Maybe Stephen can even get Cody to work on developing his gross motor skills and hand-eye coordination by playing catch with a ball and glove or by tossing the football around.
I know these things will be an adjustment for Cody because even though he has worked with Stephen before, this is a change. But it will be fine because there is a level of trust with Stephen that allows him to feel at ease making those changes. Then maybe he will realize even change can be comfortable.
Most of us have fears surrounding family vacations. The larger the assembled group, the more potent the possibility of things going wild. Even if we love one another, even if we've looked forward to the trip, we still wonder if it might end in tears. We fear everyone won't get along, that there will be some unexpected-yet-major drama. We worry that everyone will disagree, loudly or silently, and feel uncomfortable the entire time. Families have the power to affect us deeply, for better or for worse, and so our trepidation is natural. Even if our family is loving, we know that we're all only human. And for families with special needs, there are still more issues to consider. For example, will [my son, daughter, sister, brother] be able to enjoy this break in the routine he finds so stabilizing? Will our accommodations meet her needs for quiet/accessibility/comfort? Will he have a meltdown if he gets frustrated while we're on the road?
I've been thinking about these things because my husband and I are about to drive east to Hilton Head Island, South Carolina, to spend a week at the beach with my parents, brother, aunt, uncle, and grandparents. I'm so excited about the prospect of seeing my family; I've missed them tremendously in the last few months. But as my husband was saying goodnight to me one night last week, I told him that, much as I looked forward to our trip, I was also afraid of going on this vacation. I recounted memories of other trips to Hilton Head, times in which Willie had had difficult days. Unexpectedly, I found myself weeping as I described one of my last trips to Hilton Head. I recalled Dad swerving our van over to the side of the road and feeling scared that we'd be in an accident because Willie was so out of control. I remember the bleak emptiness, the despair of thinking that maybe this was just how it was going to be from now on.
And I'm scared that it might be like that again on this trip. Though we've made progress since that last trip, Willie's behavior remains erratic. And I feel such anguish about it at times—will it ever change, for good? And why can't I do more to help? I live so far away from him now, and sometimes I feel guilty that I've chosen to be here in Alabama while he's in New Jersey. I feel bad that I “get” to do work I love while Willie shreds x-rays for low wages. Moreover, I wish, so often, that I could offer my family real, tangible, up-close support. Yet here I had the chance to do so for a week, and I found myself terrified at the prospect.
“I want us to have a good vacation,” I wailed to my listening husband. “All of us. And I'm not sure we can. I'm scared for—and sometimes of—Willie, and I hate feeling that way.” Through my tears, I told him that I was glad that we'd be staying with my parents and Willie in their condo, because if Willie had a major meltdown, my husband could contribute his physical strength and help mitigate the situation. But that feeling of relief was fleeting … because really, how sad is it that I have to think that way? That we all do?
My husband comforted me, saying, “We will have a good vacation!” The force of his words made me smile, as if he could will it to be so. And he told me that, “There's never a good reason not to do what you want to do,” which I took to mean, in the words of Clarissa Pinkola Estés in her book “Women Who Run with the Wolves,” “It is never a mistake to search for what one requires. Never.”
As I anticipate our departure, I'll prepare for the worst even as I hope for the best. Likewise, I'll carry the belief that, in choosing a life that brings me joy, I am also contributing to my family's happiness. After all, what could be better to “bring along” than that?
All I did was call my supervisor an idiot.
No, really. Here's how it happened.
One fine afternoon, for some reason management suspected me of having fouled up an account I was working on.
Did they talk to me about it first? Oh no ... that would have been too logical and efficient.
Well, that's one of my pet peeves—being judged without having my side of the story heard. I suspect everyone gets that once or twice in a while, but we Aspies get it a bit more often. Among other things we tend to cross certain unspoken lines into territory that people don't talk about. Like how you talk to a girl, for instance. Or your boss. (As a married man, I'm repeating myself!)
Anyway, we tend to tick off folks without knowing it, and unlike us, they tend to have those things known as “friends.” You know, like on Facebook but you sometimes talk to them in real life, too. And when you annoy someone who has friends, they tend to talk to those friends about you, and despite our supposedly living in a society where people are presumed innocent until proven guilty, those friends tend to decide that other person was right based only on what was told to them. Which makes for interesting encounters later on.
So let's just say that's a sore spot for me.
And speaking of which, I was on the spot when my supervisor finally discussed the issue with me. (Which by then had been resolved.) Having been surprised like that, I felt quite a bit of stress. That happens to most people; perhaps Aspies feel it a bit more.
Under stress, we tend to revert to what's most familiar. And my most familiar relevant thought was “Judging people without hearing them out is wrong.”
By then, though, I knew that you can't just criticize someone—you have to show why it's in their interest to do what you suggest.
So when he admitted that he'd assumed I'd fouled up without checking first, I pointed out: “It makes you look like an idiot.” After all, no one wants to look like an idiot, right?
Even though most of the team was in the room at the time, you could have heard a pin drop. And no, the next sound wasn't “You're fired!”
Thing is, after thinking about it just a bit I knew that would be a bad thing to say. Yes, literally all I was doing was giving the supervisor a heads-up. In reality, even I understood that I was in effect calling him an idiot. Problem is, if my mouth was a stage, my wiser self was like the keynote speaker who was still in the bathroom so the emcee had to just say something while waiting for her to get back to the microphone.
You might say I had a reverse staircase wit—if I had to react on the spot, I sometimes gave a much “wittier” response than I would have done after careful consideration.
Thing is, if you work in a company you often have to “think on your feet”—which sometimes is tough when you're also trying to “think before you speak.”
On the other hand, if you've got your own office and people contact you ordinarily by email and phone—and your phone has voicemail anyway—you can devote more of your energy to helping the other person get what they need from the conversation. Keep in mind that many Aspies (and introverts in general) have what I call a “social fuel gauge”—when your needle is pointing close to Empty, maybe after a long day of interacting with others, or you're feeling frustrated, or you haven't had much sleep—it's best to wait a few minutes or hours to “refuel” until your needle points closer to Full.
And when you're by yourself—especially when you're no one's official subordinate—that helps a great deal. You'll always be the unofficial subordinate of whoever's signing the front of your checks, but generally they just want broad results, and are not interested in looking over your shoulder every day.
One last thing: When you're a coach/consultant/trainer/speaker like me, you have much more leeway to warn people (Nicely, mind you!) that they might look like idiots. They're actually—up to a point—paying you for that kind of feedback!
Learning to be flexible is a daunting task. There are times where I would have no problem considering myself the Queen of Rigid Thought Patterns. Black is black, white is white, and grey is the color of my adored kitty. End of story. But I have had the unfortunate experience of bearing witness to the self-destruction that can be created by a lack of willingness to even attempt flexibility. It’s enough to make me tell myself that whenever I’m tempted to be less than open to considering the point of view of another—no matter how impossible it may seem in the moment—I need to try to understand the other perspective. I do not wish to make the same kind of decision a young man I know made today. It was a decision stemming from a failure to make practical use of more than one of the employability skills we aim to teach in my little Career Education world. So although I am fairly new to this young man’s story, it still leaves me aching to know what the magic word might have been that would helped him be more flexible before he made and followed through on a terrible decision.
This young adult is on the verge of leaving the world of high school behind as this school year gets underway, and has attained a level of maturity which allows for increasing opportunities for independent work experiences. He’s earned it. He’s a young man known for being on the quiet side, soft-spoken and eager for work where he can get his hands dirty. A true outdoorsman, he has been in his glory when working outdoors, in all kinds of settings and weather patterns. As I have had the pleasure of getting to know him, I have watched him emerge from his unwillingness/inability to work cooperatively with others to accepting change and the occasional disappointment, and to self-advocating with the best of them. But there are two sides to every coin, are there not? And the flip side of self-advocacy when coupled with unfailing rigidity can equal a prescription for disaster.
During the course of the school day, this student—along with many of his peers—needs to have a balance between the vital work experience opportunities and the academics that never stop being important. But there are only 30 hours in the school week, including lunch. This young man wanted to be able to continue at a work placement where he was working independent of job coach support, and had actually been specifically requested by management. Because there are only so many hours in the day, and the academics do matter, a schedule was created that allowed for this student to have a half-day at this preferred site. However, he was used to being able to work a full day during the summer program. Here is where this young man’s rigidity saw the chance to take the reins of his decision-making process and ran wild. If he could not work the full day, then he would not work at all! End of story. He would not, could not understand why further accommodations could not be considered in creating his schedule. And because he could not understand it, he does not get how other people could understand it. I pulled out every teacher-trick I could think of, as did several of my colleagues. The end result: Score one for the downside of autistic traits. My frustration at this outcome is palpable. Fortunately I have better impulse control than I used to and was able to successfully resist the compulsion to jump up and down, yell and beg “Don’t DO this!!!” That might not have gone over well, although who knows, it might have gotten his attention, gotten him out of the place in his head where because this outcome was not what he’d planned he wasn’t going to have any part of any of it. Who knows?
Perhaps this story is no more or less than my frustrated-teacher need to vent, but I hope it can serve as a reminder of the importance of flexibility—teaching it, practicing it, living it. We have to find the shades of grey, and find the way that leads our young people to that place. My student had a great future job reference from a respected member of the community that was blown to bits today. Definitely not my “perfect world” scenario … but I’ll keep trying.
As a parent, I often find myself walking the fine line between offering too much support to my children and not offering enough. I have previously confessed to the challenge I face when it comes to letting my children figure things out the hard way. If they fall down, I’m right there beside them, picking them up, and probably making a way bigger deal out of the fall than need be. That’s just the kind of mom I am, and I’ve learned to be okay with that. But now that Cameron is approaching adulthood, things are a little more complicated than just holding his hand as he learns to walk, and picking him up if he toddles over.
I’ve determined that the best way to prepare Cameron for life as an adult is through employment. He’s had an internship at Angelico’s Pizzeria for a year now, and has loved it. He had a less than fortunate run with paid employment at the Department of Disability Services this summer, but has picked himself up and is soldiering on. He is now working with an adult service provider to find long term paid employment. His last two periods of the school day are dedicated to internship, which might involve paid employment, but might not, depending on how the stars and moon align. Ideally, Cameron would be afforded an opportunity of paid employment that would take place during his internship period, with maybe a few additional hours during the weekend. Ideally, the job would be restaurant-related so that Cameron can learn some of the foundation skills he will need to fulfill his dream of owning a pizza restaurant.
The good news is that through the efforts of the adult service provider, Angelico’s has offered Cameron paid employment for four hours on Friday evenings. This would be a peak period, and Cameron would have more responsibilities than he currently has in his role as intern. Additional good news is that through the same adult service provider, Cameron has interviewed for a part-time dishwashing position at a senior living facility. I was invited to attend the interview with Cameron, and it all seemed rather promising. And even more good news is that through Cameron’s school, he will be able to start a brand new internship at a restaurant near his school. I had asked for a new internship placement since Angelico’s would now be paying him for the Friday evening shift. I thought it would be better if Cameron not mix unpaid hours with paid hours. Among other reasons, this would help Cameron stick to an employer’s schedule, as opposed to just going into work when he’s bored (or hungry).
All of this good news makes for a lot of new experiences. By new, I mean “unknown.” Cameron may well have three different employers by the end of the week. At a minimum, he’ll have two employers. And he’s a full-time student, of course. If he were to be offered the dishwasher position at the senior living facility, it would bring on transportation challenges, as the facility is not in a hub of public transportation options. Cameron will adapt to new situations rather quickly, but I am a little concerned that I’m asking too much of him. I myself am stressed over the different iterations of his possible schedule, so I can only imagine what this state of flux will do to Cameron’s state of mind. The phrase “be careful what you wish for, because you just might get it” comes to mind. But as I ruminate over how far to push Cameron’s employment options and when enough is too much, I’ve shared my concerns with people close to me. The unanimous response to my quandary has been, “Don’t assume he can’t handle all this until he tries.” So, try I will let him, and I will remain within arm’s reach to pick him up if he toddles over.
While I was writing a short story recently on the topic of autism, I came up with a list of some of the most difficult areas that individuals on the spectrum struggle with. After doing some reflection and going through some of my emails I’ve received from parents, it seems the main one that surfaces has to do with relationships. “Will my son ever get married?” “Will I ever have grandkids?” and “How can I encourage my daughter to put herself out there?” For me it’s a question that evokes a lot of different emotions.
When thinking about my experiences, relationships are probably still the area I struggle with the most. It’s not because I haven’t put myself out there, but it’s because any relationship you ever walk into is so complex. It’s not something that can be taught by following a routine or a pattern. It’s something that once embarked upon challenges you in every part of yourself. Many individuals I encounter for this reason have great difficulties with this. Add to that the communication and social interaction difficulties that many with autism have and it can feel like an impossible task.
The best advice I’ve been able to give I must admit probably sounds somewhat generic, but it’s very much about finding someone with similar interests you can relate to and also just having the ability to put yourself out there while being confident. While at the International Meeting For Autism Research this year in Toronto I was able to have a conversation with author and self-advocate John Elder Robison about this topic. His wife, Mary Robison, recently “came out” about being on the autism spectrum. The Robisons have been married for years now and seem so happy. One thing that John stresses is that any relationship can be tough but you also have to consider that some people with autism just don’t want to be in relationships at all. Temple Grandin, another self-advocate, is a perfect example of this. She has said that she has always been perfectly fine with being by herself and admits to not needing anyone for her to consider her life a success.
This goes back to the saying that seems to have been growing in the autism community that when you’ve met one individual with autism you’ve met just one person with autism. For this reason many parents should just consider their child remaining single as an option. Many individuals who don’t have autism aren’t married either and live for happy and successful lives.
In the end though, for those who are approaching relationships it’s just best to take it in stride. Don’t worry about when/if it will happen because people are settling into relationships now at so many different ages and times. I’ve personally had several fantastic and amazing relationships but regrettably to get to those moments you also have to be willing to go through some possible heartache too. It’s important when those moments happen that you don’t consider them rejections but learning experiences instead. Every opportunity you get in your life is a potential learning opportunity so it’s important to focus on those times when they come. For those on the spectrum, it’s also crucial you don’t let your disability become a factor in why someone may or may not like you. This has eaten me up sometimes because, especially when I started dating when I was 15, my confidence was low because I thought girls wouldn’t like me because of my disability. The bottom line is, there are going to be countless people who like you for you, you just have to be willing to keep your eyes open.
If you keep this in mind, no matter what happens in your life you will be doing the best you can and that's something to be proud of. So try and try again. Trust me, you won’t regret it.
When I saw the title at the library, I couldn't help but take pause. When I spotted “The Normal One: Life with a Difficult or Damaged Sibling,” the slim volume by Jeanne Safer seized my attention. Though I cringed at the word “damaged,” curiosity led me to check out the book and read. Safer's older brother was the “difficult” one in her family, and she writes with poignant pain about his isolation and the debilitating pressure she felt as “the favored child.” She shares her highly dysfunctional family situation, and the disappointment of not being able to connect with her brother as an adult. Safer's story did speak to the importance of siblings, and I agreed with her that, until recently, neurotypical siblings have had few opportunities for sibling-specific support.
However, red flags began waving immediately. The text's terminology continued to trouble me; the term, “damaged” seemed to shroud the ways in which individuals like Willie can be whole, and wholly themselves. And as someone who has “left normal,” I didn't like being put back into that category. (Throughout the book, “normalcy” is described as something to strive and sacrifice for, rather than an artificial, often-arbitrary construct.) Further, Safer's extreme pessimism was practically poisonous for me. Though I understood that the book was intended to reveal the hidden struggles associated with having a “special” sibling, it largely ignored—and even mocked—the idea of finding meaning within those challenges. For example, Safer quotes a sibling who says, “I'm trying to eradicate the “Hallmark Hall of Fame Special” myth—‘How I learned the meaning of life by having a disabled sibling.'” Safer and the sibling she quotes seem to think that finding meaning in one's most challenging relationships necessitates a naïve denial of the difficulties therein. By contrast, I believe that moving through relational grief and pain into a place of acceptance and “meaning” shows strength and emotional fortitude.
Furthermore, I know from experience that siblings can take a very different path to freedom than the one that Safer suggests is their only option. She asserts that siblings must “forge an identity in which [the] sibling is peripheral.” On the contrary, I've come to see that siblings can be central to one's identity in a healthy way. For example, by acknowledging Willie's importance in my life, I was led to serve at L'Arche, an experience I value beyond measure. There was a fatalistic tone to Safer's words that gave me chills: “No one with an abnormal sibling has a normal childhood …. Their success is always tainted by their sibling's failure, their future clouded by an untoward sense of obligation and responsibility.” She goes to say that “[for parents] … disappointment and the loss of possibility are permanent.” She notes that “A damaged brother or sister will never be a peer, a companion, or a confidant,” and that “Being [a] sibling forever defines and confines [them].” Institutionalization is mentioned as a viable option more than once. Eventually, I had to skim the passages; I couldn't bring myself to continue close reading. The book was intended to serve as nourishment to siblings like me, but I felt a recurring taste of toxicity on my tongue.
What does real sibling support look like? For me, it appears in full form in another book I read this week (one I savored as an “antidote” to “The Normal One”): The Anti-Romantic Child: A Story of Unexpected Joy by Priscilla Gilman. Gilman, a former Vassar professor, shares the story of her son Benjamin's development with courage and candor. “Benj” has hyperlexia and has “borderline Asperger’s,” but those labels do not limit his luminescent character. Gilman writes openly about the daily struggles of life with this “unexpected” boy, yet she celebrates his every achievement and ultimately arrives at a place of hard-won acceptance and gratitude. I didn't want this beautiful book to end, but as I turned the final pages I raised my arms in triumph at this line: “I will always resist mightily any orientation or approach that sees [my son] Benj as a problem or somehow “broken” rather than as simply and profoundly himself.”
The fall season has arrived, but my life has changed greatly since last autumn. At this time last year, I was starting another semester of college. Now I have graduated. I now plan to write and find other employment opportunities along with tackling more life skills which will be essential to my living an independent life, skills which I could never pick up from a college course.
It is strange to me that this will be the first autumn in a long while in which I have not had to take up a new college semester. Normally, I would be looking into new textbooks and learning what each professor required for class. Now, I have other concerns. I have mixed feelings about this change. On one hand, I am relieved to be free of the routine of preparing for and carrying out college work which did become quite hectic for me at times. On the other hand, though, I miss the pleasure I felt as I learned new information about a subject or new ways of thinking I never used before. It is hard for me to quantify everything I felt about college because I enjoyed some areas of the experience and greatly detested others. At any rate, I have many plans for my future which will allow me to learn many other things.
I recently signed up for a one-day class about voiceover work which I will be taking later this fall. Voiceover work has always fascinated me, and in the past, I have considered finding work as a voice actor doing work for commercials, TV shows, and narration for audio books. I have heard voice actors discuss how their work is very physical in nature; they put their hearts and minds into their work to produce a convincing and compelling result that can grab an audience’s attention. I have been amazed by how powerful some people’s voice work has been and the kind of sensations it caused me to feel, and I now want to see how such spectacular results are created on the other side of the microphone. I feel this class might lead to a side career for me in the field of voice work, and I would be interested in learning what kinds of employment opportunities are available for this profession.
My parents and I have had many discussions this summer regarding what I have to learn in order to be independent. With their help, I plan on working on many different areas of my life to make this happen for myself. My mother and I will be working on compiling a “how-to” book as a reference guide for the skills I need to work on.
One area relates to food. I plan on learning how to cook the foods that I eat regularly and new foods so I will be able to add more variety to my diet. I know how to prepare certain foods for breakfast and lunch, but I still largely depend on my parents to provide me with my dinner meals. I would like to be able to prepare meals for dinner and other types of foods on the stove and by using the microwave. Some other areas regarding food that my parents are going to be working with me on are cleaning out and washing the refrigerator, making sure I check expiration dates on my food, learning what to look for when food is spoiled and the proper way to dispose of it, and utilizing coupons.
I will also be learning how to do more household chores such as dusting and household maintenance and more about taking care of myself. I am proud to say that I have just learned how to shave myself using an electric razor.
I know that I need to work on my telephone skills. Sometimes when I have conversations on the telephone, I get confused and have trouble figuring out what to say to people. I can misunderstand the meaning behind what other people are saying to me, and if I interpret their meaning the wrong way, I end up saying something completely unrelated to the conversation. Thus, it takes me a bit of time to realize what they actually meant. My parents and I will be writing what my mother calls different “scripts” or “dialogues” for specific purposes such as calling the doctor’s office when I am ill which I will then practice. These dialogues will also be added to my book for me to reference when I need to make phone calls.
With my dad’s help, I will be learning new exercise routines which will increase my level of physical fitness to a more acceptable level. During my time in college, I did not have much time to exercise; I only had a couple of hours of free time in the morning and in the evening, and during those times I did not feel very motivated to exercise. Lately I have been walking daily with my father, going farther and farther each day and have managed to lose a few pounds. I have also begun a routine with exercise bands. Both of these activities have made me feel more self-confident as I have grown stronger, and I want to see what else I can do to improve my physical condition.
I have also been thinking about what I could do to look for employment opportunities and prepare for them. I recently bought some books on job interviews which I will read to learn some basic information on how to conduct myself during an interview. I also plan on looking for videos either on the internet or by purchasing them to further help me understand the interview process. Then, I will move on to doing some practice interviews.
Looking for more writing work is also a priority of mine. With my parents’ help, I plan on scouring the job search websites for employment opportunities along with looking through the newspaper classifieds. I am currently working on a short story that I hope to have published when I am finished editing it. I also have other ideas in various stages of development that I am working on that I hope to have published. So, I have to find avenues to publish my work as well.
I have many new things to practice and learn, and I am excited about expanding my capabilities. I will provide updates as to my progress in each of these areas. The good thing is that I now have a lot of time to devote to learning about these things. With help from my parents, the resources I can utilize, and a bit of determination, I know I can succeed at anything I want to in life. It will take some knowledge, skill, and a positive attitude. Nothing can stop me.
It had been three weeks. The wedding, illness, and a recurring car issue had prevented our weekly visit but finally, Pat, our longtime caregiver and family friend, and I were back on schedule to take Madison to lunch.
We loaded the van with Madison’s favorite snacks—graham crackers with peanut butter, Fig Newtons, and Cheetos—and called the school to give them our estimated arrival time. We’d learned over the years not to give too much notice in case we had a change of plans.
Madison does not do well with sudden changes of plans. Schedules keep her focused and on task. In fact, “Schedule please,” one of her few appropriately-used phrases, is her “go to” request when she is anxious or unsure about what’s next.
A good answer can prevent an upset.
Ten minutes before our arrival at school, Pat noticed a light on the dashboard.
“It’s back,” she said. “The low tire pressure light is on.”
“Again?” I said, incredulous. The van had already been in the shop twice for that issue, a faulty tire pressure sensor that prompted false readings.
“Let’s keep going. We’ll take it right back to the shop after our visit,” I said, sighing at the annoying light and its disrupting role in my life.
“What are the numbers this time?”
“Right rear is 30. Others are 42,” she said.
“Okay. Let’s press on and get Madison.”
And we did.
“Schedule please,” Madison said as soon as she got into the van.
Pat and I looked at each other, surprised at Madison’s request since it was such a routine outing. Then we realized she was confused. Usually Madison’s one-on-one comes with us for our weekly lunch. But this week, the assistant was unavailable so Pat and I were her only escorts.
“Oh no,” we both whispered at the same time. “She thinks she’s coming home for a visit.”
“Schedule please,” she said again.
“First Mommy’s van. Then lunch at McDonald’s. Then back to school,” I told her. The familiar routine seemed to calm her despite the absence of her aide.
“That tire pressure number is lower,” Pat reported as we approached McDonald’s. We decided to stop to put some air in the low tire.
This time I decided a preemptive strike was in order.
“New schedule, Madison. First Mommy’s van. Then stop for air in Mommy’s van tire. Then McDonald’s,” I told her as Pat filled the tire.
She seemed content, but just as soon as we drove across the street to the McDonald’s the tire pressure went down even lower.
“Let’s do a drive through today, Madison,” I said as we breezed through and picked up our order. When we parked to organize our food, Pat checked the tire once more.
It was flat.
“Schedule please,” Madison said as if she could sense another change coming.
“First Mommy makes phone call. Then lunch in the van. It’s a picnic, Madison!” I said and handed her a bag of fries.
Picnic—I hoped she remembered that term from her beloved Barney-the-Purple-Dinosaur escapades. Barney and Baby Bop have picnics. So does Madison when Mommy’s van has a flat tire.
She sat buckled in the back seat as we waited for help. I called the roadside repair company and they promised someone would be there within 45 minutes.
This time I didn’t like the schedule.
“Any chance they could come a bit sooner?”
“I’m afraid that’s the best we can do,” the kind but firm voice replied.
“Okay,” I said, giving in to her non-negotiable tone.
“And,” she said brightly, “I hope you have a better day.”
“Me, too,” I replied, cringing at the thought of what the next 45 minutes could hold.
“I bet she says that after every one of her phone calls,” I mumbled to myself.
I hoped she was right.
“Okay, Madison. Time for picnic.” And the wait began. First she munched on the meal and then her snack favorites. Thankfully, the repair man came within 20 minutes and in another 10 he’d changed the tire.
“You’ve got a large screw lodged in that tire,” he reported. “The spare should get you home safely if you keep the speed at 50 or less.”
Meanwhile, we had notified the school and their van arrived to take Madison back to school.
“Madison, our picnic is finished. Time for school,” I said. “Give Mommy kiss.”
She did and quickly got in the van.
“And,” I said to all as they prepared to leave, “I hope you have a better day!”
Thank goodness, we did.
It’s hard for me to believe, but Autism After 16 is celebrating its first birthday this week. As with all birthdays, it seems time has flown by and yet so much growth has taken place. What better time to reflect on milestones and accomplishments than a birthday?
I think back to when Cameron was first undergoing diagnosis—or lack thereof—and I myself was undergoing acceptance and denial of his situation. I don’t think I’m the only one who will admit that 20 years ago my only exposure to developmental disabilities came from “Rain Man” and “Forrest Gump.” In 1998, when my son was undergoing testing, autism wasn’t an everyday word. The Internet was brand new territory, and “Googling” wasn’t a verb. So forget about typing in a list of symptoms and finding thousands of Facebook friends that felt your pain and could offer advice and support. And gluten-free? Are you kidding me? If you were lucky enough to have information about the pros and cons of a gluten-free diet, you were in your kitchen making bread every day. The gluten-free aisle in your local grocery store wouldn’t appear for another decade.
So today, I would like to offer a piece of gluten-free, dairy-free, sugar-free, and artificial ingredient-free birthday cake to the Pioneers of Autism. Without you, the reports released on various research projects regarding autism wouldn’t be making national news. Autism Speaks would not have over one million likes on Facebook.
I am always so impressed when I hear from an AA16 reader that begins an email with, “I have a 6-year-old …” I mean, wow! How awesome is it that parents of 6-year-olds are checking out what’s ahead of them a decade from now? When I had a 6-year-old, I was still figuring out day-to-day supports, and how to get through the next 10 months. Heck, I was still celebrating toilet training success. Thinking about the teenage years wasn’t even on the map.
Thanks to the Pioneers of Autism though, the importance of early detection and early intervention has reached the mainstream. Parents with questions about their young child’s development don’t have to look far to find someone who knows someone who can point them in a helpful direction. Were it not for the Pioneers of Autism, it might never have occurred to me that staying in school beyond the “typical” timeframe, as opposed to racing to graduation, would be in Cameron’s best interest. I realize that the services Cameron seamlessly receives through the school system today will quickly evaporate once he has aged out of the system. As the children of the Pioneers of Autism have reached adulthood, I have hope that their struggles with finding post-secondary education programs and meaningful employment will lead to a wave of legitimate, tried and true, outcome-based opportunities for today’s 6-year-olds with ASD, and the 6-year-olds-to-be as well. The need for these types of programs is nothing new. The recurring success of these programs is something the Pioneers have set out to establish. I, for one, have my wagon packed and am ready to join the trail.
As we all know, many levels of autism wreak havoc on adherence to what are considered social norms in the neurotypical society. One of the many social norms in question is hygiene. Many parents, families and caregivers face an awkward situation when they have to explain to others that they must help their grown child or family member take a shower and shave and that they must remind them to use deodorant, or tell them brush their teeth or to wash their hands after using the restroom.
One such situation our family faces is when we are out in public and Cody must use a public restroom. If he is with me this creates somewhat of a stressful dilemma. Cody is 26 years old and therefore too old to accompany me to the ladies’ room. And I certainly cannot accompany him to the men’s room. This means before Cody enters, I stand with him outside the door to review behaviors. I make sure he is paying attention to me as I speak and give him detailed instructions such as, “When you go, go in a stall and make sure the door is locked. Don’t drop your pants all the way down unless you must sit on the toilet. If you do have to, make sure the toilet seat is clean. If it has anything on it, go to a different stall. Don’t talk to anyone in there, just do your business, make sure to wash your hands with soap and water, dry them and come back out.” So then I stand outside the door and worry till he comes back out.
When Cody is with my husband, Bill only needs to deal with the stares he gets because he’s accompanying a grown young man to the restroom. Normally, there are restrooms that have multiple stalls so he can do this in a nonchalant way. But sometimes there is only a single bathroom and then people wonder why he is entering with another man. It makes life rather uncomfortable.
I pretty well lost my anxiety about letting company know that I need to excuse myself to assist Cody with his shower a long time ago. When people see Cody for the first time, it really isn’t evident that he has any sort of cognitive disorder. So I took to getting that out in the open right off the bat. This takes the questions out of their mind and alleviates a lot of undue stress and explaining for me.
Many times, ADHD comes along as a sidekick to autism. So this can make grooming and hygiene rituals a real chore. Repetition is the only way to instill good practices with Cody. “Ok, this is how much shampoo we use. Put it on your head and scratch and scrub. Scratch with your fingernails so you get your nails clean too. Now rinse it off. Now take the soap and put it on the wash cloth and rub it till it gets really foamy. Wash your arms first, now your chest and belly, now wash under your arms, wash your legs and feet and last wash your private area and your rear. Wash very well because you don’t want to stink.”
This isn’t what everybody has to do with their grown children. However, it is not looked upon as strange when someone must be assisted with hygiene if they are in a wheelchair. Why is it should it be different for someone with autism?
This is a reality for many families and caregivers of adults with autism and other cognitive disorders. Awkward as it may seem to others, it doesn’t have to be that way. It’s part of our everyday life with these unique individuals whom we love very deeply. And what these individuals may seemingly lack in common everyday knowledge, they make up for in love, spirituality and the ability to look and see with the heart.
When Willie and I were growing up, our dog's name was Curley, and she was tenacious. She lived with our family for 17 years before she passed away. Curley was, admittedly, a funny-looking mutt, with a long body, short legs, and a stubby, “curly-Q” tail, but she had a stellar personality. We met her when we were visiting our grandparents in Arizona; she was the daughter of Daisy, our grandparents' dog. Willie and I spent our days traipsing around the desert with Curley, and by the end of the vacation, we couldn't bear to leave her. I remember pleading with our mom, asking if we could please bring Curley home. Mom relented, and we brought Curley on the journey back to New Jersey. All these years later, we still remember the sad, plaintive sounds she made as she cowered in the unfamiliar pet carrier at the back of the plane.
Willie treated Curley with respect, even deference; though he rarely approached her unless we suggested that he do so, he was sensitive to her presence. He'd laugh at her antics and enjoy trying to out-pace her, trail blazing on our family walks. He, like the rest of us, loved having a dog around. True, he'd pat her stiffly, rarely showing affection without prompting, but he'd include her in his prayers every night. In his mind, she was certainly a part of the family.
As Willie matured and started struggling with aggression and self-injurious behavior, Curley grew older too. She was slower on her feet, quieter. But when Willie would melt down, she'd sprint to the nearest corner to hide. Afterward, when Mom or Dad would tell Willie, “You scared us, and you scared Curley,” his face would show sorrow. “I'm sorry, Curley,” he'd tell her, and though she'd avoid him for some time afterward, she'd come around in the end.
This past week, both Willie and I became pet owners for the first time since we lost Curley five years ago. (It just so happened that we stepped into this new status on the same day, unbeknownst to one another.) Willie received two small turtles as an unexpected gift. He's named them Itchy and Scratchy after characters in “All Dogs Go to Heaven,” one of his favorite animated films. In turn, thanks to the generosity of a friend, my husband and I now have a kitten, Bootsie.
I've always wanted to take care of a kitten; it's been my dream since kindergarten. At the time, my parents told me that, since we already had the responsibility of a dog, it wouldn't be wise to have a kitten come into the picture. At the time, of course, I disagreed, but now I see their point. Willie and I enjoyed having Curley around, but in terms of caregiving, she was our parents' dog. Mom and Dad were the ones who made sure that she was fed and walked and safely housed when we went on vacation. True, we did help out occasionally, but for the most part, we got to enjoy the benefits of having a dog without bearing the full weight of responsibility.
Now that I'm caring for a pet as an adult, I have a new appreciation for the level of commitment involved. To be the “point person” for an animal's needs is significant in terms of time, money, and energy. And yet I'm thrilled to be caring for Bootsie; just a week of providing for her needs has changed me. Likewise, when I spoke to my mom this week, she told me that Willie has taken ownership of his new turtles; each day, he has helped her to feed them, and clean and refill their tank as well. And when she passed by his bedroom today, she saw him staring at the turtles' cage, watching the pair intently. I love the idea of my brother having his own pets; something about the concept of him taking care of his turtles makes me glad. I am encouraged by the thought that he's able to contribute as a caregiver. It's both an indicator of his progress and, potentially, a source of growth in and of itself.
What can I say? August has been one heckuva month.
When it began, I was still childless. (Meanwhile, one of my high school classmates was preparing to drop her daughter off at college!) And now, I'm a somewhat experienced daddy!
There's nothing like kissing your newborn baby on the cheek. Or feeding her. Or carrying her around.
There's also nothing like starting to worry about what the neighbors think. For better or worse, here in 21st century America, people stay alert for any signs of child abuse or neglect, and even in ambiguous situations they tend to call Child Protective Services on the principle of “better safe than sorry.”
When you put this on top of the anxiety many of us Aspies go through every day—“Am I offending or even harassing someone or making a royal fool of myself and not even knowing it?”—you get a heaping mound of extra stress and even paranoia about how you're being perceived.
Oh yes, and we have to make judgment calls in a sleep-deprived state. Babies need to be fed—and changed—every few hours around the clock. And of course they may wake up and cry at any time, for any reason or no reason. (I'm really fortunate to have Emily to help—I have much more appreciation for what single parents go through!)
You see, our little K.D. (Kid Deutsch), like many babies, spits up quite a bit sometimes. And our lactation consultant has advised us to keep K.D. upright for at least 30 minutes after each feeding. So each time, we sit K.D. up in her car seat.
One fine evening, right after feeding, K.D. soiled her diaper big time … it even showed on her onesie. And our house has lots of windows.
I made the tough choice to let K.D. sit up as usual ... while (metaphorically) biting my nails:
What if someone looks through the window and sees our baby sitting in her own filth?
Will they just think I'm a rotten parent? Will they talk about us everywhere and so whenever we go out people will glare at us?
Will they take pictures and post them on Facebook, Twitter, Instagram, Pinterest, Flickr, etc., so everyone else will figure “Hey, at least we're better parents than the Deutsches!”?
What do I say if the cops or sheriff's deputies or Child Protective Services come to the door?
Will I have to ask the lactation consultant to testify in court that that's what she advised us to do? And what if she says, “But I didn't mean to let her sit in a dirty diaper—everyone knows that!”? (If I had a dime for every time someone has said something just like that to me, I could hire a team of nannies for K.D. and not have to worry at all!)
Not to mention ...
Will the Washington Post or Washington Times, or maybe some other major paper or famous blogger, run a story: “Child Raising: Is It For Everyone? Should Autistic People Reproduce?”
On the other hand, if Emily and I do a good job with K.D., people might figure there are things Aspies can do as well as anyone else!
Epilogue: Nothing happened. I changed K.D.'s diaper and onesie about half an hour later without incident.
Many years ago, I had the good fortune to attend a local conference featuring Alan Sohn and Cathy Grayson, authors of the book “Parenting Your Asperger Child.” I highly value Grayson’s opinion and have been fortunate to have had the opportunity to work with her both in my role as parent and as individual with AS. When Grayson speaks, I tend to listen. On this particular occasion, what she was speaking about was the value of marching band as it relates to students with Asperger’s Syndrome. The focus was on working towards more meaningful inclusive experiences for adolescents on the autism spectrum, but he take-away for me that day was a line I’ve replayed in my head countless times in the last six years: If your child with AS plays an instrument, get him or her in band!
That day I went home and had a heart-to-heart with my son about the decision he had just made to not take band in junior high, but rather to focus on technology with a computer elective. This was an either/or situation. While the initial thought process had been that his long-term future was more likely to be technologically rather than musically based, I could not shake the budding conviction that the key to his social future at the high school level lay in being a part of an ensemble, doing something he was good at—playing the trumpet.
So in one of those rare situations where a teenager listens to Mom and heeds her advice, my kiddo changed his schedule and signed up for band as an elective. To this day I consider this perhaps the best decision he ever made. From a social standpoint, my boy struggled throughout high school, which was not entirely unexpected. Academically he excelled, also not entirely unexpected. But by the time he got to ninth grade and was eligible for marching band, that musical wild card became the key to a winning hand. Marching band gave him a group of friends with similar interests and talents. It enabled him to have countless opportunities to practice the art of negotiation and compromise. He learned that practice makes almost-perfect and to listen even when not being directly spoken to. He discovered camaraderie and good sportsmanship, hanging in there even when in physical pain/hungry/thirsty/cold/hot. And he learned how to be a friend. Along the way his musical skills grew, and to this day I am convinced that his Aspie talents include being a spot-on marcher, but what he’s gained in those respects are the tip of the iceberg. Watching his transformation as he grew from a boy to a man as a “band geek,” I was able to send him off to Europe for three weeks last summer to participate with an Honors band ensemble. Three weeks in Europe and six different countries with a group of fellow band geeks he’d met twice before they left. But that’s the power of the band, it may be unfathomable to the uninitiated, but it is as real as the instrument my son carries with him almost everywhere nowadays.
As I mentioned in a previous column, my son has just begun his freshman year in college. He chose his college based in large part on the possibility that there was a chance that just maybe he could perhaps make the marching band at his new school. This school’s marching band has a national reputation; when he first voiced the desire a number of years ago to try out for this band, he might as well have been talking about his desire to be an Olympic pole-vaulter. Okay, son, dreams are nice, but let’s have a back-up plan, right?
Wrong. Turns out that there was no need for Plan B. He made the band. On the school’s band website, it describes the reasons a student would want to participate in this ensemble, and one of the top reasons listed is, “Instant friends.” My years as a high-school band mom have shown me that’s true. All fears, concerns, worries and random anxiety about my Aspie son being on his own hundreds of miles from home at the place where I had a less-than-stellar experience myself evaporated the moment his father’s words sunk in, “He’s in. He made the band.”
Today is the first day of school for Cameron. It’s the first day of his first senior year. I say his “first” senior year because he’ll be having at least two senior years before he graduates. In some ways, it kind of sucks for Cam that he’s in this situation of repeating his senior year. While all the hubbub that goes along with being a senior in high school can be exciting, how exciting is it when you know from the get-go that you’re not graduating with the rest of your classmates? The fact that Cameron is considered a senior this year was so far out of my realm of thinking that when I attended the open house/meet the teachers/get your schedule event last week, I immediately went to the 11th grade table. No ... Cameron is a 12th grader now. Great.
I’ve explained to Cameron that he won’t be graduating this year, but I worry about how he’s processing this. I think he understands, and yet I’ve noticed when completing forms, like job applications, which ask for graduation date, he enters “2013”. That could well be because he knows he’s graduating “next year” so it makes sense that “next year” would be 2013. Or has he misunderstood my explanation altogether?
It might’ve been feasible that we could have rushed Cameron through his outstanding credits, and he might have been able to graduate “on time,” but it made no sense to do that. Cameron needs this extra time to develop academically and socially. He’s not ripe enough to be a high school graduate. And I’m nowhere near ready to figure out what comes next for Cameron, after high school. So we’ll take these extra years as a senior and use them to grow, develop and mature. I’ve asked Cameron’s school to structure his schedule so that he can have internship period in the afternoon, and hopefully he’ll gain meaningful skills at a “real” job. I worry about how his experience this summer might impact his readiness to embrace new employment opportunities. I worry that Cameron might find a paying job, only to have it be too much to handle in addition to his workload from school. I worry that I interfere with Cameron’s employment counselor’s and transition teacher’s plans. I worry that I’m misplacing my worrying energy and should be worrying about something else altogether.
One thing I don’t worry about is my decision to pass on the Extended School Year this summer. Having the summer break and the resulting need to fill Cameron’s schedule with worthwhile activities was good practice for post-secondary life. I’m 98.7% certain that there isn’t a post-secondary program which Cameron can easily roll into after high school graduation. While Cameron was fairly well occupied this summer, it wasn’t always easy to keep him that way. And I only had to concern myself with about five weeks over the summer. I can’t imagine how challenging it would be to face “ever after” with filling Cameron’s schedule.
So, while it may be somewhat difficult and confusing for Cameron emotionally when he doesn’t wear a cap and gown next June, I’m sure he will buck up and appreciate graduating that much more when the time comes. I know I will!
My last semester of college is finally here. In almost four month’s time, I will have my Master’s degree in Strategic Communication and Leadership and will be starting the next chapter of my life. It’s scary to even think about what will come next. For almost 21 years, from Pre-K until now, I’ve had the security blanket of knowing that I was still a student. Starting in 2013, I will be transitioning to a full-time adult and for the first time I’ve come to the realization that I’m growing up.
Uncertainty about the future is one of my biggest concerns. I have grown accustomed to the routines of college. But now, after five years of those familiar routines, I will be facing new challenges. Questions keep popping into my head:
These questions have been filling my mind. When new challenges come I tend to over-think things and this time is no exception. I worry about the future when it comes to employment and disclosing my disability. The only job I ever had accepted my disability—I work for Autism Speaks. But now, the biggest question I have is whether I should disclose my disability to my next employer. Will it help or hurt me to mention it? I’ve been able to handle any project thrown my way without accommodations. However, I still struggle when it comes to group projects and communication is such a huge part of any job environment it seems today.
What I try to keep reminding myself about the future is what one of my friends told me one night we went out. He said, “Just enjoy the ride because as long as you are happy with where you are, you can never be disappointed.” I personally thought it was a little cheesy, but honestly it hit home for me a lot. Why do I need to have all the answers right now? Growing up, I strived to make my questions into answers as soon as I could even if they were bad ones.
Growing up I had a plan. My plan was to prove to people that I could make something out of myself, regardless of my struggles. Since then, I often take the time to reflect back on where I was when I was a kid and where I am now. I must say it’s been one amazing ride and hopefully the next years will play out the same.
On my daily walk around our town in northern Alabama, I pass a house I call, “The Arizona Dreams House.” It's a bungalow tucked between Victorian mansions, and I love it because it's so unabashedly unlike all the others, so very much itself. But the best part isn't the house itself; it's the yard. Instead of a plot of grass, the owners chose a pandemonium of plants. In the middle of it all is a smiling sun, and a tribal figurine. These details make me think of Arizona, but there's also a certain scent surrounding the house that reminds me of desert summers past. As I walked past the house today, I tried to isolate it. This was difficult given the variety of plants; at first, I couldn't pinpoint the scent that made me think of the desert. And then I had it: the smell of burnt-out pine. It wasn't a garden plant at all, but the dried-up pine needles and pinecones that littered the driveway, having fallen from the tree above.
And those needles brought back my childhood summers. Each year, I'd travel with my parents and my brother Willie to visit our grandparents in Arizona. It was a long way to go from suburban New Jersey, so my parents would make the most of it; we'd stay for weeks on end. I always felt closer to Willie during these summers. We spent more time together; out there in rural Arizona, we were the only kids for miles. We didn't have other options for playmates, and so we found ways to connect. I learned a great deal about how to be a friend to my brother in those days.
We found so many things to do. Digging in the garden with Grandma, building a house and riding on dirt bikes with Dad and Grandpa. Doing laundry with Mom; she'd let us turn the old-fashioned crank to wring out the clothes after they'd come out of the washing machine. Hanging the clothes to dry on the line with parched-wood clothespins and laughing as the wind smacked damp cloth into our faces. Swimming in the deep cattle-trough, flipping over and over the bar in the center. Chasing the chickens (Willie) and collecting their eggs (me). I didn't think much about autism or the fact that my brother was “different” when we were tearing around our grandparents' five acres. Now, I can see how leaving our normal and exploring that new normal together was a gift.
On special days, we'd pile into the car and drive “to Canada.” (It wasn't really Canada, but I understood why the grownups called it that; it did seem like a foreign country.) We'd drive to Sedona, Arizona to picnic in the National Forest, and it would be strange to be surrounded by trees after having been in the desert for so many days. And that's the scent I remembered as I stood in front of the “Arizona Dreams” house in Alabama: the way the pine needles in Sedona would smell when they'd been baking in the sun. I could even call back the way they'd rustle under my feet when Willie and I would walk through the forest paths. And I remembered the day we had to leave Sedona in a hurry because of a fierce thunderstorm. Mom, Willie and I huddled in the back of Grandpa's pickup truck as it flew down the highway. We were shrieking with fear and exhilaration as the thunderclouds loomed above and lightening flashed. By the time we got close to home, we were soaked with rain and giddy with having survived.
That night, when everything was quiet, we got out lawn chairs and looked up at the stars. On clear nights, the sky was the best entertainment around. Sometimes there would be a lightning storm; sometimes we'd see shooting stars. Always, there would be constellations. But all these years later, I know that my favorite thing about it wasn't what was going on in the sky. It was how safe I felt, sitting in that line of lawn chairs with my family. I loved being gathered together in the darkness, looking up at the lights.
For the past several days, my family and I have been trying to cope with an invasion of wasps. They came into my bedroom a few nights ago and have apparently been trying to make themselves at home ever since, much to the chagrin of my parents and myself. While we have been trying to get rid of them, I have been forced to make several changes to my usual routine, some of which I have liked and some which I have not.
I first noticed the wasps when one woke me up in the middle of the night. My mother showed me how to use a fly swatter to kill the invader, and it took me a few practice swats to get the hang of it. I hit my first victim and successfully killed it, but three more wasps showed up soon afterward. Fearing that they would keep swarming into my room, my mother told me to sleep in a different room for the rest of the night. I had a bit of trouble sleeping that night; I kept imagining that I was hearing wasp buzzes in the other rooms and I worried that they would move into the room where I was sleeping. My mother stayed with me with the fly swatter at the ready, and I finally went to sleep.
In the morning, my mother called an exterminator. The exterminator sprayed all of the windows and doors on the outside of the entire house with a very smelly chemical substance. When he was done, he said the smell would be gone within a few minutes. The smell did not dissipate one iota; so much for “truth in advertising.”
The smell is still so overpowering that it has made my bedroom intolerable to be in at this time. Consequently, I have had to sleep in another bedroom for the past few nights. In order for this room to be as odorless as possible, my parents closed the windows and door in the room. This caused the humidity to increase several notches in the room, making it feel like a small sauna. I have had to adjust my sleeping habits in order to sleep comfortably in the room. I usually like to have a sheet and comforter covering me, but I have had to go without the comforter for the last few days. It is taking me longer to fall asleep, but I eventually do. My mother tried running a fan the first night, but it just added to the odor issue.
My family has also taken several car trips over the past few days in an effort to get away from the smell and let it work itself out of the house. We have made it a point to stay away from the smell as much as possible, so we have tried to make sure that these trips keep us out of the house for a very long time. Some of these trips have been part of our normal errands such as grocery shopping, but others have been for pleasure. My favorite outing was a trip we made to a horse-racing track; we made a few small bets on the horses just for fun and I greatly enjoyed the fresh air, something I did not get a lot of at home due to the closed windows. The outings made for fun excursions, but there were times when I just wanted to be at home and back to my normal routine. I have tried to take the good with the bad during this time, but it is becoming increasingly difficult for me to do this. My parents keep telling me that sometimes things like this happen, and we must make the best of it. I would like very much to make the best of things, but sometimes it is hard for me to see the silver lining when there are so many clouds in my view.
As I write this, the smell is dissipating from most of the house, but my bedroom remains sealed off due to the heavy amount of chemicals it took to kill the wasps that decided to live in my room. The bedroom I am currently sleeping in is also still closed up so that I can sleep as odor-free as possible.
I hope to be able to move back into my room in a few days once all of the wasps and odors are gone. While I enjoyed doing different things, I cannot wait to get back to my normal, wasp-free, less-smelly schedule.
As usual, I’m awash with anxiety.
We’re going to a graduation party for our neighbor’s son. What I’m feeling isn’t about having to tamp down the residual sadness I feel that my 20-year-old autistic son, Mickey, isn’t going to college too. Well, okay, maybe it is just a little. Mostly I’m worried because tonight there will be 50 or so people there, many of them teenagers who’ve never met our son.
Mickey, however, is eager to go. So keyed up he doesn’t even balk when we tell him he can’t wear a tee shirt, pulling on a pale blue polo shirt without protest. “Can I bring my Muppet album?” he asks.
“No hon, not appropriate.”
“Okay,” he says agreeably. “Next time.”
Without even waiting for us, he strides confidently across the street. He greets people happily, working the crowd. I shadow him; even as I stop to chat, I keep my eyes on him. He walks out to the deck; I’m right on his heels. He walks back into the kitchen; I stand close behind.
“Can I have some water?” he asks the caterer.
“Please,” I prompt him.
“Don’t follow me Mom,” he says, irritated. I’m startled. But really, who can blame him?
I get it. He hates my hovering. But I’m not only monitoring his behavior.
He’s excited to be here. Maybe too excited. That can trigger a seizure. I remember a dinner in this same house two years ago. Mickey beside me at the table. How his head pivoted toward me as his eyes rolled back. The room went eerily still as I cradled him. “I’ve got you, you’re safe,” I’d whispered to him over and over until the seizure subsided.
But do I really need to be this vigilant? No 20-year-old wants his mother policing him. I take a deep breath.
“Okay, Mick,” I say. “I won’t follow you.”
Mickey plunks down at a table filled with teenage boys I don’t recognize; one of them slides over to make room. Mickey has always wanted to connect. I think back to the time a behavioral therapist observed him in the elementary school cafeteria. Her report had been gut-wrenching. Each time Mickey sat down at a lunch table, all the other kids got up and moved. Mickey doesn’t have much small talk in him; he still struggles to sustain a complex conversation. But I watch as he listens intently and hangs in there. No one stares; no one points; no one moves away. Later I see him in the backyard with the other boys, somewhat awkwardly whirling a Frisbee back and forth. I feel a rush of gratitude. The other kids have absorbed him into their group without question.
I’m not kidding myself; I know there are many times he still stands out. Does this bother me just for his sake? Isn’t it also about my own abiding discomfort when it feels as if people are judging him—and by him, I mean us—so critically?
I long for him to fit in. But I also want him to be exactly who he is: his playful, endearing, unfiltered self. How do I reconcile the two? Is it even up to me any longer?
Our neighbor’s daughter Ali joins me. “I had a great conversation with Mick,” she tells me. Ali is studying to be a special education teacher.
“Was he talking about the Muppets?”
“Not at all,” she assures me. “He told me he’s been working out at Planet Fitness and asked if I wanted to go with him.”
I love that he’s mustering up appropriate conversation. Yes, he can only sustain it for brief periods. But how far he has come, since that day 18 years ago when his first speech therapist told me he might never speak at all.
My husband Marc joins me on the deck. Together we watch three handsome young men tossing a football in the twilight. Our son is one of them. He is holding his own.
“Look at him,” Marc says softly. “You know what’s remarkable? How unremarkable this looks."
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
We have previewed and commented on the "How-To" videos below. Some of these are simple; others are fairly complex. Refer to these yourself, or use them with your adult child or student to help teach and generalize skills. Please note that some videos may contain skills which require support or training. You must determine which are appropriate for you, your adult child, or your student to use safely. Also note that as these videos come from other websites, they may contain pop-up ads. Click on an icon to see category index. Click here for full index.
Search the Autism After 16 website using the form above. You may alter your search settings on the search results page.