First published September 26, 2011.I’m that mom. You know the type: the ones that make that sucking sound at the sight of a toddler toddling? The type whose reaction to a boo-boo causes the child more distress than the actual boo-boo? So having a 16-year-old in need of some practice with “independent” living skills has been a bit of a stretch for me. Through much knuckle biting on my part, I have learned to stand back and watch as my son scrambles up from a half-eaten breakfast to quickly brush his teeth while the school bus (thankfully) waits patiently. It only took four times of me suggesting he set his alarm 10 minutes earlier before he was actually ready when the bus arrived. This independent living stuff is a dual track learning curve. Not only does my son need to learn the skills I’m trying so hard to impart to him, but I need to learn to let him make use of these skills. My son participated in a fabulous 2-week summer camp at the Smithsonian Institution this year. It was an all access multi-media camp for high school students with a variety of disabilities. My son was the only participant that traveled to and from the museum independently. He took the Metro, which required one train change and a scooter ride to the Metro station from home. The first two days of camp, I went along with him. On the second day, I tried to let him lead, and internally made that sucking sound when he went to the wrong side of the platform. And then he headed towards the wrong station exit. I was nervous. I asked him if he wanted me to travel with him one more day. What he said to me affected me in the same way as did his first spoken word. He said, “How will you know I can do it, unless you let me try?” Wow. Every day he traveled to and from the camp without incident. He called when he was entering the metro station, and called when he arrived at his destination each way. Some days he would call to say he was going to another museum after camp let out. He never forgot to call, so I never had to worry. (I was on worry alert. I knew exactly when to start worrying if the phone didn’t ring, but it always did.) The last day of camp I got a call five minutes after he called to say he was leaving camp. His fare card was low, and he couldn’t get through the turnstile. I tried talking him through adding money to his card over the phone. It didn’t work. He was overly frustrated and I couldn’t figure out how to work a machine I couldn’t see. Finally, I told him he would have to hang up, and ask a Metro employee in the station to help him. And do you know what? Within five minutes I received a call that all was fine and he was on his way home. I’ve found that the more independence he discovers, the more he wants. And that is a very good thing indeed. As for me, I’ve gotten quite good and internalizing that sucking sound.
Yesterday was a very rough day for Cody. When he got up he seemed to be fine. But it wasn’t long before he started having behavior issues. Grumbles and groans started to emerge. Then he began hitting his head. Trying to get him to tell us what was wrong was useless. And no amount of warnings of consequences if he didn’t stop did any good whatsoever. But sometimes behavior issues are indicative of something more than a bad mood.
When Stephen arrived they began their chores as usual. Cody continued to engage in negative talk and acting out. I intervened at that point and told him a timeout was in order. He sat on the sofa for five minutes and seemed to calm down. So he and Stephen went on their outing as usual.
A couple hours later they arrived back home. Stephen promptly asked for some Tylenol. Cody had done nothing but complain the entire time they were gone and this left Stephen with a headache.
They struggled through the rest of the day, but it was less than productive. This was a very off day for Cody, and poor Stephen was at a loss as to what to do.
Stephen went home and we went about our normal routines, cooking and cleaning, taking showers and attempting to settle in for the night. Cody was still no happy camper.
When it was time to go to bed, Cody was more than happy to get there. But I could hear him getting up and down over and over again to use the restroom. That’s when it dawned on me that perhaps he had a Urinary Tract Infection (UTI).
Communication barriers like this are extremely frustrating—not only to the individual with autism, but to families and caregivers as well. It’s so easy to assume that behavior issues that arise because of them are just acting out and that redirecting or a stern talking to should rectify the problem. When typically useful behavior management techniques don’t work, everyone is left frustrated and confused. And when the parent or caregiver finally figures out there is physical discomfort at the heart of the matter, you are often left feeling about two inches tall.
But how do we overcome this kind of scenario? It’s important to those in charge of caring for a person who has difficulty communicating not to beat themselves up when they miss the mark on what the real issue was all along. Instead, use this experience to learn and think in terms of pre-emptive strikes for future events like this. Don’t automatically assume that a bad attitude is at the root of bad behavior.
Watch for signs and symptoms that may indicate an illness or unseen injury. I learned that sometimes when Cody hits his head it is because he has a headache. Sometimes his grumbles and groans are a sign of lack of sleep the night before. Once, he kept procrastinating when I told him to come upstairs. It would have been very easy to write that off to inattention or being lackadaisical. But upon closer examination I noticed him limping. A trip to the doctor and an x-ray later we learned he had fractured the metatarsal bone in his right foot. Imagine how I would have felt, had I not been paying attention then!
As always, continue to work with these individuals on proper communication. Use visuals and practice this part of communication on a frequent basis. Cody and I have a ritual we do when I see certain behaviors beginning to surface. I start at the top and work my way down. “Cody, do you have a headache?” “Cody does your neck hurt?” And I continue on from there.
One thing I haven’t often thought about asking him, however, is whether it hurts when he goes to the bathroom. We tend to think of UTIs as a problem unique to women, but men can get them too. (At the time of this writing, we haven’t found out if Cody has one.)
Being unable to verbalize pain creates a difficult situation. But looking beyond the surface of inappropriate behaviors to find hidden clues of illness or discomfort may just save everyone a lot of unnecessary grief and heartache in the long run.
“I brought a surprise for you, too!” I said as I bounced up the stairs of my family's Hilton Head vacation rental last week. As I'd expected, my parents had had a few gifts stashed away for me, and now it was time for me to share something with them. With a flourish, I unfurled an extra-large Autism After 16 T-shirt. The thick black cotton shirt says, “Autism After 16: Because Everyone Grows Up” on the front.
I'd brought an extra-large shirt with me to offer my family some flexibility; either my dad or my brother, Willie, could wear the tee if they liked. I was excited to see one of them wearing it. After all, I feel proud of the work that we do at Autism After 16, and glad that we celebrated our one-year anniversary recently. Even so, I'd also had reservations in bringing the shirt in my travel bag. Specifically, I'd thought about whether or not my parents would hesitate to have Willie wearing an autism-related shirt. I wondered: How much does Willie know about autism in general, and about his own autism in particular? Would it be somehow unfair or inconsiderate to give my brother a shirt that shares his diagnosis openly with the world? On the other hand, would it be empowering for Willie to wear it, to share autism as a part of his life?
Willie wears shirts with logos on them all the time; that night, I believe, he was sporting a forest-green tee from my days at Vassar College. The shirt is what I like to call, “Vintage VXF” (Vassar Christian Fellowship), and it's been part of Willie's wardrobe for years. But even though Willie was sporting a shirt that shared a religious belief, I had a feeling that the Autism After 16 shirt would be different, and I was right. As I held up the shirt for my mom, I could see thoughts flickering across her face. She asked who I'd intended it for, and I said, lightly, “Oh, you know. Either Dad or Willie, whoever it fits best.”
To her credit, my mom shared what was on her mind with me. I could see her considering her words with care as she said, gently, “What do you think about the idea of Willie wearing it? I mean … do you think that it would be appropriate … ?” She trailed off, but I could sense the rest. She meant: What do you think about potentially proclaiming your brother's autism to the world, when he may or may not have a firm grasp on what that means, or what it might signify to others? I was touched by how she invited me into the conversation. I could tell that the topic made her uncomfortable, but I could see that she was open to what I thought.
“I've been thinking about that,” I said. “I get that it's sensitive, and I wouldn't want Willie, or you, to feel uncomfortable. And if he were to wear it, we'd have to talk with him, try and explain what the shirt signifies. I just wanted to share it with you because I'm proud to be a writer there … and, after all, I'm part of the world of autism because of Willie! But I think it has to be his decision. For it to feel right, I think it has to be something he chooses consciously.”
My mom nodded. “Thanks, sweetie,” she said. In her face I could see years of facing unexpected questions like this one, the strain of parenting in uncharted waters. All at once, I saw the uncertainty that comes with loving someone “different,” with leaving normal not just once, but over and over again. Needless to say, I hugged her tightly when we said goodnight. I didn't know what would come of it, but I felt happy to see my dad wearing the T-shirt the next day. When he said, “Thanks for this, kiddo,” I saw the gleam in his eyes, the slight smile that told me everything I needed to know. He was proud to wear the shirt, proud of his son and daughter alike, and that felt exactly right to me.
So, I like working at home because that means I can better arrange when I have to interact with people. Especially my boss(es).
As I've also mentioned previously, we have a new baby, K.D. (Kid Deutsch). Emily and I are taking care of her full time until later this fall, when Emily will return to the office and I'll have K.D. full time.
So in a sense I work two jobs—A SPLINT and stay-at-home fatherhood.
You know how some people complain that their bosses don't understand anything that's going on, scream at them without even explaining what's the matter and just in general give them a lot of crap?
Well ...you know the rest.
K.D. can't critique anything I do in A SPLINT. She can't demand I change anything. She can't even criticize me for not doing it efficiently enough. What she can do, at a moment's notice, is bring it to a screeching—or rather, screaming—halt.
No, she can't fire me ... not even if I call her an idiot. (And I sure as heck can't quit ... not that I would ever more than hardly ever consider it.) Curiously enough, so far she's the last person on Earth I would ever consider calling an idiot. (Even if she does yell at me without asking, say, whether I need to take a few seconds to warm up her bottle before feeding her!)
On the other hand, it's not like I can ask her to stick to a schedule. Or even email me what's bothering her, for crying out loud!
Speaking of which, like many bad bosses K.D. is shockingly technologically behind. She can't even use a phone, much less listen to a voicemail or send an email. In fact, I wonder if she's even literate!
(Of course, that could change 10 or so years down the road, when she may be able to email, text and even Facebook-message me ... along with all her friends. Or maybe by then it'll be holograms or mind waves. Then I'll worry about data charges, not to mention if when she breaks/loses/gets robbed of her device!)
Sometimes all she wants is just plain companionship. You've had bosses who needed hand-holding and soothing, right? Not to mention those who like to call surprise meetings all the time?
And of course, we've all had bosses who left messes and expected us to clean them up. Who focused entirely on the here and now, and wouldn't listen to anything you tried to explain to them. Who needed us to drag them kicking and screaming all the way. Who were just plain immature.
K.D. is the most exacting, disruptive and impulsive boss I've ever had. She combines the worst features of the worst bosses I have ever had. (And I've had a few doozies—though I'll be the first to admit that at least one or two of them were likely doozies-only-for-me.)
And Emily and I love her just the way she is right now.
Somehow, we are screeching up to the end of September, and I have NO idea how that happened! I find myself questioning what back-to-school time is like for the typical household. Is there such a thing? This is the first year in about the last 15 where I was not getting two children up out of bed, fed and out the door in the morning, as one is now off to college where he is presumably getting himself up out of bed, fed, and out the door. Furthermore, it’s as likely as not that my 16-year-old will be gently checking to see if my alarm has gone off as vice versa. So the life of a mom-with-kids-in-school is definitely winding down.
I have come to recognize how extraordinarily helpful it would have been had my Asperger’s been diagnosed before I embarked upon the seemingly endless cycle of getting children up out of bed, fed, and out the door in the morning. My Asperger’s, when directed towards the positive, provides me with a source of great strength and more recently, a willingness to tap into that strength for good rather than for near-constant self-recrimination. “Normal” for me has never been normal and it is only in the last few months that I find myself seeing the ways in which I can finally consider myself a grown-up. For all of the time that I spent berating myself in the past for an inability to just do the next right thing because it was the grown-up thing to do, it’s hard not to look back with some regrets. But regrets don’t help me be a better mother, or teacher, or grown-up who happens to have an autism spectrum diagnosis. I can look back and regret that not valuing myself enough to recognize when I needed help did not make back-to-school time any easier over the course of my children’s lifetimes. It has always been about hanging on by a thread, waiting until the last second. (How many times can we hit that snooze button and not have to write a note explaining why the kids are late to school?). Back-to-school for my children was, as I’m sure is the case for most families, an enormous transition. Factor in me getting them ready for back-to-school, and the result was hyper-vigilance mixed with obsessive-compulsive school-supply-shopping trips. I timed out everything just so to ensure that as much was done that could possibly be done ahead of time, so that when I felt the inevitable shut-down mode coming on, I would have some slack. Cutting myself the slack scared me to death, however, when it meant allowing an opening for the feelings of laziness, worthlessness and self-pity to march on in … usually by about this point in the back-to-school time of year.
So, I am more than a bit relieved that the changes that have shifted my little universe over the last year or so—since my “officially official” Asperger’s diagnosis—have enabled me to truly internalize so much of what I spent years trying to impart to my children, and later my students. Strategies work when you actually use them. It’s okay to be wrong sometimes. It’s okay to be late for school sometimes! It’s okay to stay home when you’re sick—your classmates and teachers don’t want you around when you sound like your ready to lose a lung! Organization is good; it does not always have to morph into obsession. Taking care of yourself is good, and it does NOT mean you are lazy or worthless.
My favorite part of this year’s back-to-school time is the mornings. Anyone who has known me for longer than the past year who is reading this needs to stop laughing for just a moment and allow me to explain. I don’t hit the snooze button anymore—I wake up to a favorite Mozart tune on my phone, and with enough time that rushing around like the Tasmanian devil is a thing of the past. I have clothes hanging up in the closet to choose from, which is more streamlined than digging through a laundry basket or weeding through the pile on the dresser. I have a lovely little dining area where each morning—because there’s plenty of time now—my daughter and I can sit and have a peaceful meal to start our days while being entertained by our cat. No pressure, no muss, no fuss.
I could get used to this self-acceptance thing. Now, if I can finish out the month without looking back with regret over the past however-many years that I basically tortured myself at this time of year and missed out on so much peace along the way, all will be well … and I’ll have one more back-to-school time to look forward to.
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.”
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