For the past few weeks, I have felt as if I might go “stir-crazy.” An Arctic blast moved through my hometown, causing near-whiteout conditions every time I looked out the windows and bringing temperatures down into the single and minus digits so that running errands or simply heading out anywhere became decidedly out of the question. I tried to cope with this sudden period of isolation as best I could, but there eventually came a point when I really just wanted to get back outside. Luckily, my mother had ways to keep me busy, keep my mind off the weather, and learn a few valuable life skills in the process.
Coincidentally, this stormy weather came about while my mother was dealing with a problem of her own. She had thrown her back and neck out, so she turned to me for help in taking care of more chores than I am used to around the house. I swept the kitchen floor, did the laundry, and cleaned the bathroom every day—tasks I have accomplished numerous times before. In addition to these, though, I helped my mother with some unfamiliar duties due to her inability to lift heavy items. I was feeling a bit glum after spending a few days cooped up in the house (and with a serious case of writer’s block to boot) and getting a handle on these unfamiliar chores added to my frustration, but as I carried on with them, I did feel quite better.
I worked throughout the days with my mother’s supervision on several tasks, but the chore which most aggravated me was cleaning the dishes and putting them away. Even though I love organizing things, the process of doing the dishes gets on my nerves because I have a hard time manipulating them due to my fine motor skills still being below average. With my mother coaching me, I had to figure out how to clean each kind of dish and utensil, something which becomes quite daunting to me when I am confronted with a tremendous variety of items of all shapes, sizes, weight, and materials. I had to get all of the dirt and grime off each dish with liberal amounts of soap and water in the kitchen sink. The dirt made me feel uncomfortable enough, but water was also splashing everywhere and was all over me as I tried to manipulate each item around in the sink so the water could hit the dirt at the right angles.
Some of the most difficult dishes for me to clean were the two gigantic slow cooker inserts in which my mother had cooked a lovely beef dinner. They were large, heavy, oval bowls which barely fit inside the sink. It felt like I was in a titanic struggle against these oversized pots; they stuck out at odd angles which made the water I applied splash all over the countertop (which I later had to clean up). My mother had placed water in them to soak the hardened areas, but some of the foodstuffs remaining in them stubbornly stuck to the sides. This meant that I had to vigorously scrub those spots until I felt like my arm was going to fall off. The whole procedure of cleaning these unwieldy dishes was undoubtedly the hardest thing I did that day, but somehow, they were cleaned and I felt proud at having survived the battle.
When the weather cleared, my family and I went shopping for groceries. It was a welcome break from the monotony of staying inside the house, and I was able to do a little personal shopping. When we returned, I helped my mother stock the refrigerator, freezer, and cupboards with all the food. I have helped in this endeavor before, but because of my mother’s back and neck problems, I took on a more involved role this time. It was a challenge for me to figure out how everything would fit into each storage space; some of these items took up quite a bit of room and were big and bulky. Others had to be stored in certain spots, locations which filled up quickly making it hard for me to fit everything in the designated area. My mother taught me a lot about how to properly store it all, and even though I did become frustrated while doing it, I know that with time and practice I will eventually be able to do this task with ease.
To me, doing these chores was not at all fun, but I learned how to do some new tasks and helped my mother by contributing to the house’s general upkeep. I also got a really good glimpse at what it takes to run and maintain a household on a daily basis. I found that even though I do help around the house, it is a totally different situation altogether than doing it all, all the time. I realize that the road to true independence will take time. I will have to strike a delicate balance between chores, writing, and relaxation which I am still trying to figure out. I feel that once I am able to do these tasks quicker and with less frustration, it will be a big step in the right direction. I am, however, very proud of the work I have been putting in around the house. It makes me feel very good to be of help to my parents.
I was expecting the call, but not the topic.
“How’d it go?” I asked Pat, our family caregiver who has been with us for over 20 years.
“It was great, very orderly and no medication issues at all this time.”
The camp arrival process was sometimes lengthy given the precise nature of the medication check-in. Prescriptions, labeling, and camp forms had to match exactly, an understandable requirement for the special needs population that is served by the week-long winter holiday camp.
“And how was Madison with waiting?”
“She was fine, no problems. She knew the schedule and was happy, in a great mood.”
“Great!” I was relieved. Madison was not a good “wait-er” and prone to upsets if she had to wait too long without knowing what was next on her schedule.
“But, Becky,” Pat said, clearing her throat before slowing down her words, “they wanted me to tell you that if Madison did not sleep well, she may be sent home.”
“What?” I shifted in my wheelchair, leaning forward on my armrests to press the phone harder into my ear. “They said what?”
“They said she is disruptive when she does not sleep. And they don’t have the enough staff to accommodate her when she gets up early.”
“Wait a minute; you said they will send her home? Because she doesn’t sleep well?”
“That’s what they said.”
I could feel the anger heating up the back of my neck, but I didn’t want to alarm Pat and put her in the middle of the tempest brewing in my mind. I swallowed hard and replied in a tight voice, “Okay. Let me get into the details.” And then I added, reminding myself of the calming nature of gratitude, “Thank you so much for taking her to camp.”
I clicked off the phone and with it went much of my grateful spirit as I faced the reality of the situation. How could they do that? That camp is over an hour away. How would she get home? I can’t just run out to get her.
Paralyzed for almost 17 years now, I’ve learned to drive—but never felt safe enough to drive Madison. She can be an exuberant passenger, raising her hands above her head and fist-pumping them in unison so rapidly that the car shakes when a favorite Barney tune or Mary Kate and Ashley video pops into her head.
In fact, I usually have two caregivers take her to camp. If she didn’t stay, I would have to find transportation and with New Year’ Eve on the horizon—the whole point of the camp—who could help me?
But beyond the logistics, the process infuriated me. Madison had been a camper there for almost 10 years. And now I learn that her sleep issues are significant enough to jeopardize her camp stay? They chose to uninvite her then, at check-in, through a caregiver?
I looked at the endearing photo of her on my desk. Bless her heart, my Madison. Like many kids with autism, she’s never slept well—beginning at birth. But whether in my home, or in her residential school, and now in her adult placement, we’ve continued to address it with sleep logs, reviews, and medication adjustments as needed.
I shook my head, took a deep breath, and began my due diligence. I called and emailed and researched and escalated—all the things we do when we sense an injustice is hovering over one of our children.
I didn’t like the facts I uncovered. I learned that there is a sleep requirement in the fine print of the application. In previous years, it seems that Madison had not been making this minimum. Although I’d received a few verbal reports of some sleep issues (among the glowing reports of her many successes), I didn’t know about the minimum or its consequence. I thought I had addressed any concerns with additional sleep aids.
But as I listened to these caring professionals explain the rationale of the fine print, I began to understand. Madison would often wake very early and disturb the other campers. When staff would take her out of the situation, the staffers would not get the sleep they needed.
Did I want that? I’m sure these campers wanted a good camp experience, too. Did I want Madison to take that from them and from the camp counselors who cared for them?
So when the call came two days later that she was not sleeping well, I calmly activated the Plan B I’d devised with the help of the apologetic and compassionate camp staff. Within hours, Madison was picked up and returned to her group home after a quick stop at home for our late Christmas celebration.
As I looked at my daughter’s bright but sleepy eyes, I wondered if maybe I was forcing camp in into her world. Was it time to give this up?
More importantly, how will I know?
And the next day, I began to call and email and research and escalate—all the things we do when we sense a solvable problem (I hope!) is hovering over one of our children.
This week Cameron and I are making our third campus visit. Hopefully it will be our last. It’s a tedious job, finding a postsecondary program. Have I mentioned that before? As if the travel wasn’t tedious enough, there are the applications to contend with as well. So much paperwork goes into the application. There’s the parent questionnaire, the recommendations, the copies of IEPs, student questionnaire, testing results—of which it seems each program has their own unique twist on the types of tests they require. And the recommendations are such a hassle. I hate inconveniencing Cameron’s boss and teachers over and over again! But each program Cameron has applied to requires two to three recommendations, and the forms are slightly different, and of course supposed to be completed without the parents or student seeing the responses, so there’s no reusing a recommendation for multiple programs. You have to inconvenience your reference folks multiple times, there’s just no way around it. And with so many parts coming from so many sources, it’s a challenge to keep up with it all! I inevitably end up giving away my original copy of Cameron’s current IEP, and must sheepishly ask Cameron’s school for another copy.
One of the components of the application that I am always biting my nails over is the student questionnaire. I am always conflicted over just how much support to give Cameron when it comes to completing these questionnaires. Spelling is not his strong suit, and I never know if I should proofread his responses and point out his mistakes, or just let him submit the questionnaire as is, in order to accurately reflect Cameron’s capabilities. For one questionnaire he completed, I asked him to use the spell checker in Word to verify the specific words he had misspelled. The problem is that often Cameron’s phonemic unawareness is so severe, spell-checking programs have no clue what his intentions might be. Mind you, he has made great strides in spelling and reading over the past few years, but anything language-related for Cameron is still a hurdle. I feel that it’s important that any program considering Cameron understand his challenges. I therefore try to remain hands-off when it comes to him completing the student questionnaires. Having worked in a postsecondary program, I am all too aware that parents often provide the bare minimum when it comes to information about their child, and leave it to staff to figure out the missing pieces after the student has gained admission to the program. I don’t want to be one of those parents. But then I wonder if admissions committees read applications with an eye towards assuming the picture being presented has been dressed up to impress them. If I leave Cameron’s questionnaire “unretouched” might the powers that be assume that his submission is a polished one? Would they then assume that Cameron is much lower-functioning than he is?
Sigh … I’ve just decided to present as clear of a picture of Cameron as possible. And that means not dotting every “t” and crossing every “i” for him, letting the letters land where they may.
The Saturday evening before last would prove to be the start of a trial which Cody had never experienced until that night.
Several months ago my sister Connie had been diagnosed with cancer of the lung and brain and her condition was deemed terminal. Now on this night we would stand by her side as she arrived at the crossroads between the finite life of the flesh and the eternal life she would possess in Heaven.
Having been at the bedside of other loved ones as they made this journey, I knew what to expect. But Cody did not. He had never been present during someone’s passing. And since we could not leave him home alone with Bill’s mother, this would be a first for him.
I could see Cody already knew things were becoming more serious earlier in the day. My sister Pam and I had spent the previous night with Connie in her hospital room. Aside from a rare fun weekend away, my overnights away have either been at work, or dealing with a family crisis. It’s been a year since I’ve worked outside the home, so when I arrived home late Saturday morning I was met by my nervous and agitated young man.
He paced back and forth rambling on about being home without me which is his way of giving me the “And just where have you been all night?” inquisition.
Having had very little sleep the night before, I was dog-tired. Nevertheless, I tried my best to be understanding of Cody’s discontent and to do whatever I could to make up for my absence the night before.
Just as Cody had begun to calm down and we were sitting down to dinner, the phone rang and Pam told me I needed to come to the hospital. I would have been content to go alone, but Bill didn’t want me to. So, the three of us set out to endure this tribulation together.
It is a 30-mile drive to the hospital and it seemed it took an eternity to get there. On our way I prayed that Cody would find peace of mind during this sad ordeal.
When we arrived I walked in the room and exchanged silent hugs with Connie’s two sons as well as various other family members. I thought Cody and Bill were behind me but I turned to see them both out in the hallway. Bill whispered to me that he and Cody would just stay out there for a while.
Needless to say, my main focus was doing whatever I could do to see that Connie was as comfortable as possible and providing any comfort I could to her two boys. But I also took breaks to walk out and check on Cody and Bill. I was so surprised to see how well Cody was keeping it all together. He seemed quite content to quietly walk up and down the hallway. It was not at all like the nervous pacing of a caged tiger we are so used to seeing when stress levels are elevated. He was in control. He was composed and mannerly. I was so proud of him I could not help smiling even in such sorrow.
Connie’s final moments came at around 2:30 a.m. the next day. We all stood around Connie’s bed whispering goodbyes and I love yous to her. In tears, we watched the grueling process her body was undergoing. I then turned to see my son looking in from the doorway of her room. He was standing completely still with his hands in his pockets. His demeanor was very subdued but there was an inherent understanding in his eyes which struck a chord in my heart. He was so poised and dignified. I was just in awe.
As I stared at him with strange wonder, Bill quietly asked him, “Do you want to go in?” Cody answered back in a whisper that was barely audible, “Not.”
A few seconds later, Connie drew her final breath and her pain ceased forever.
All the way home, I praised my son for how he had become such a strong young man and how much he had impressed me. I had prayed for God’s grace and peace to be upon my son in this difficult situation. When all was said and done, I knew my prayers had been answered.
One of my favorite aspects of being a writer for Autism After 16 is the opportunity to hear real, inspiring stories firsthand. (When I read a book or watch a “TED” talk about autism, I know I might find myself interviewing the writer or speaker a few weeks later. How cool is it that?!) I love speaking with individuals, family members, and business owners who do valuable work for our community. When they share their stories with me, I always come away strengthened, knowing that I'm not alone in my hopes and dreams for my brother. And I'm especially encouraged by accounts of sustainable, scalable models of adult autism employment.
Employment is a problematic area, but it is also imbued with possibility. On one hand, a majority of adults with autism are either unemployed or under-employed. On the other hand, progress is being made. Adult autism employment opportunities are sprouting up everywhere, and I feel a sense of new energy and potential surrounding the employment sector. And after several years of listening to stories and interviewing business owners, I'm realizing that there are some very specific supports that an adult with autism needs in order to overcome the odds of finding employment. Having an unusual or exceptional skill helps facilitate success, but it isn't the only factor, not by a long shot. What I see, again and again, is that a strong community can make all the difference. When others are committed to coming alongside an individual in everything from training to transportation, big changes can happen.
And seeing others stand in the gap—that is, the space between where we are with autism employment and where we want to be—has challenged me to do the same. I've begun thinking about how siblings like me can help support autism employment for our brothers and sisters. Even at a distance, I believe we have a great deal to offer. Of course, you'll want to connect with your sibling and family members throughout the process, but there's plenty to do on your own:
First, let yourself dream. Family members do need to be practical, but you are also uniquely equipped to dream on behalf of your sibling. You're a peer, with firsthand knowledge of your sibling's abilities. Also, you may be a bit less protective than your parents, more willing to see your sibling take risks. Ask yourself: How does my sibling most like to spend her time? If given free reign, what does he do? List enjoyable pastimes, activities, and skill sets. This is brainstorming time, time to let your imagination roam free.
Next, make a list of what you think your sibling may need from a job or workplace now. What may be a necessity in the future—such as receiving a paycheck to help defer living expenses—may be optional for your sibling at this stage. Ask: Do they need a quiet space? A flexible schedule? Transportation? Consistent income? A sense of ownership in their work product? Consider what's optional, and what's truly essential.
After that, do research. Read about (or better yet, visit) successful programs or businesses. Explore coffee shops, bookstores, and tech startups; learn about why they are doing well. (The AA16 employment section is a great place to start.) Also research your sibling's particular geographic area; you can explore available programs or entrepreneurial opportunities. Do your homework, and try to spot places in which your sibling's contribution would be welcomed. As you do so, remember: Your sibling isn't you. Their tastes and preferences may be radically different from your own. Maybe you can't stand the thought of working in retail—or at a think tank!—but such an environment might be a perfect fit for your brother or sister. They might love and thrive in a field where you'd fail, and vice versa.
Finally, consider ways in which you might offer practical support, even at a distance. Could you co-create a business plan with your sibling, design a website, or help practice for an interview? You and I have the power to make a significant contribution to our sibling's employment. Let's see what we can do.
I'm a devoted fan of the TV show "Parenthood," about an extended family living in Berkley, CA. I started watching in the first season because the family includes a now-teenaged boy, Max, who is on the autism spectrum. It is a somewhat realistic portrayal of the family's struggles with ASD. (Though it almost lost me when, soon after Max's diagnosis, the family found a perfect therapist, who came to the house and performed seeming miracles with Max. Practically a live-in therapist. Riiiiiiight. It's that easy.)
But eventually the pretty young therapist slept with Max's ne'er-do-well Uncle Crosby, causing a big family stink that made her quit the job with the Braverman family. Now they seem to make do like the rest of us, without a nearly live-in therapist. There's a lot of other family drama to keep me interested, like the recent marital troubles of Max's Aunt Julia and Uncle Joel. But it's still Max's immediate family that interests me most.
Anyway, while Reilly was home for winter break, he started watching with me, and decided he likes the show. He watched the episode in which Max's deepening social isolation at school becomes apparent to his parents. And in which an adult character, Hank, who used to date Aunt Sarah, realizes he, too, has Asperger's. Hank has a photography studio, and Max is obsessed with photography and has begun to hang out at Hank's.
I was curious about how Reilly related to the show, and decided to interview him for this column. I knew he probably wouldn't share his feelings about the show if I just asked casually. I thought he would cooperate more fully if I put it in the context of writing about the show. It didn't work out as well as I'd hoped, partly because Reilly's Dad interrupted, feeling left out of the conversation over dinner, since he doesn't watch the show. Or maybe the whole discussion made him uncomfortable, or he sensed Reilly's discomfort. At any rate, I gave up fairly quickly.
I didn't get much. But it was still sort of instructive. I asked Reilly if he knew that Max has Asperger's. He said he did, and I asked if he knew what that meant. "It's like autism. People who have trouble with social cues."
What did he think of Max? "Max is kind of awkward. His only friend is a 35-year-old guy."
"You're aware that you have been diagnosed with autism, like Max?" I asked. "Yeah," he replied. "And how does autism affect your life?" I wondered. His somewhat surprising reply: "It doesn't. I feel just like a normal person. I have a lot of friends."
Indeed, he does. This conversation made me glad that we had made the decision to take Reilly out of public school and send him to a Special Ed high school beginning with his freshman year. I remembered middle school, where we were starting to see the isolation that I thought would be worse in a big public high school. Instead, Reilly went to school with a lot of kids like himself, where he was "popular."
He's in a postsecondary program with students like himself, and he is happy. But, this can't last forever. He might transfer to a bigger school where he will have to find his own community. And he will have to live in the real world eventually, where he will need to find a community. These are worries that keep me awake at night.
Meanwhile, on "Parenthood," Max's parents are thinking of starting their own school for kids like Max. Maybe I should start writing for the show. Or maybe "Parenthood" writers could start scripting our life.
I hate diagnostic testing. The first time I submitted Cameron to a battery of diagnostic testing, he was 4 years old. I remember looking at the vast differences between the “average” scores of an “average” child and the very “below average” results Cameron scored. With every round of subsequent testing, I would desperately look for signs of Cameron gaining on the “average” child. Those gains on the average were seldom found. I remember feeling like Cameron’s test results were a reflection of my parenting skills. If Cameron wasn’t making gains towards becoming average, surely it must be the result of something I didn’t do. There must be some intervention I didn’t insist upon. Maybe I didn’t pay close enough attention to the implementation of those teaching recommendations at the back of the report.
Somewhere along the way, I lost interest in the testing reports all together. The school system did the necessary testing at the required intervals to verify eligibility for services. As long as the school system had what they needed, and Cameron received the services he needed, I was happy. In 2010, the testing report was particularly bracing. This was the first report in which the word “autism” was used in the diagnosis section of the report. Also bracing was the fact that Cameron’s full scale IQ was reported as being 68. This was a new low compared to all previous testing. But I knew that Cameron was capable of more than his standardized scores might suggest. I also knew that the report wasn’t of the highest quality. Let’s just say, the language of the report led me to believe that the diagnostician was not terribly experienced.
Now that Cameron is applying to postsecondary programs, getting updated testing was required. And finally, finally, I am seeing the gains I had given up hopes of seeing years ago. In the testing Cameron completed this past December, his full scale IQ was reported to be 100. That’s within “average” range! But what’s even more uplifting is that the narrative of the report seemed to accurately reflect Cameron’s nature. I’ve never read a report that seemed to be about my son. All the previous reports I read with a certain level of detachment because they just didn’t seem to reflect the little person that shared my life. It took the better part of two decades for me to see my son in a report about him. While it felt good to read a professional narrative that reflected what I already knew about my son, it didn’t change a thing about Cameron. And yet, when I received the 15-page report, I found myself hungrily flipping the pages to get to the test results, so I could see how Cameron compared to average. (I also wanted to see if the dismal results from 2010 were an accurate reflection of Cameron’s capabilities.) I still hate diagnostic testing. But I must admit, it does feel good to finally like what I read.
Last year, I wrote a post on my personal blog called "My Autism My Voice" about the benefits of having an autism Super Bowl commercial. In the piece I discuss how it would have a critical impact on our community in terms of spreading awareness. Then I wondered: If we did have a 30-second commercial, what would that look like? In my blog I mentioned having the entire spectrum represented, having facts and figures on autism prevalence thrown in and having a celebrity with autism—such as Temple Grandin—close the piece.
A year has passed and I still feel the same way about this idea. However, the message has been altered a bit. Now more than ever (and maybe with a little bias!) I’d love to see a Super Bowl commercial that emphasizes adults on the spectrum.
If I were creating such a commercial, I would include:
The Super Bowl is the most-watched TV show nationally year after year; the commercials that air during the game share that audience. Admittedly, comnmercial space during the Super Bowl is prohibitively expensive for autism organixations! Regardless, this commercial would be my wish. As much as I love football and the Super Bowl, I keep thinking about the impact those 30 seconds could make in our society.
That’s why the first bullet I wrote about mentioning the most recent statistics is so important. When I was growing up the estimated number of children with autism was 1 in 10,000. The impact that autism has on our society is why the national attention is key now. We need not only a commercial but also a national agenda.
My dream of an autism Super Bowl commercial might be unrealistic, but it sure would be nice wouldn’t it?
Once upon a time I went to a yoga class feeling, well … awful. I was cranky and tense for no apparent reason. Maybe this is what Willie feels like before a meltdown, I thought. I would have taken a page from my brother's book and rolled myself up in a rug, burrito-style, if only we'd had one in the house. An elusive something was wrong, and I was desperate to fix it. When I confessed this to my teacher before the start of class, she said, “Well, you know, it's okay not to be okay.” Spontaneously, I hugged her; her words gave me a sense of relief and surrender. Even so, my mind rebelled: No! I don't want to be all Zen, I want to feel better!
Class began, and I was still a conflicted mess—at least on the inside. My mind was not cooperating, but my body was in great shape. My body did every pose, moving calmly and freely. So I decided to appreciate what was working, rather than worry about what wasn't. Moving my body helped release the negative feelings. That's part of why our family is so big on physical activity: Willie's harmful behavior decreases when he walks Chevy, swims, and gets enough exercise.
Yet somewhere in the middle of the class, I felt it catching up to me. You know what it is: it's the truth you don't want to face. That's a major part of why so many people are so busy, why we make our lives unnecessarily difficult. That's why we wish for a day off, a day to sleep in, but then say yes to a bunch of people who ask us for rides on a weekend morning. That's why we long for the weekend, but once it finally arrives, we find ourselves itching to go back to work, back to being productive. We'll just check our email. We'll just clean the bathroom. Translation: “I'll do anything to stay busy and avoid the vulnerability!”
We've all been there. And If we took a moment to breathe, a day to rest, we'd run the risk of encountering some pretty strong feelings. I am, of course, included in this “we.” At the time of that yoga class, I'd been breaking down in tears every weekend for several weeks. It was hard and uncomfortable and messy. And it had a lot to do with the fact that I'd started taking actual weekends off for the first time in a long time. On those weekends, grief, anger, and loneliness caught up to me. At the time, Willie was going through an unexpected period of aggression, and I felt powerless to help him or our parents. When I had the least to do, I felt most afraid. This made sense, because I was actually feeling the distance between myself and my family. I was actually experiencing the grief and anger that arose whenever I heard that Willie had hurt himself or our parents again. How frightening it is to know, on a visceral level, that you have little to no power to intervene when a beloved brother struggles.
But here's what I've learned, what I want to share with you, fellow siblings and family members. It's simple, but it may help to hear someone else affirm it: You are stronger than your feelings. They're not out to get you. They're just messengers alerting you to the truth about your life. And when you admit them to your awareness, they don't last forever; they ebb and flow like the tide. The feelings you're afraid of will wash over you, yes, but you—the essential you, the core you—won't get swept away. You can bear them. Moreover, you must … that is, if you want to keep recognizing the person in the mirror.
That day in yoga, I lowered myself onto the mat for final relaxation and gave up the fight. After moving my body and feeling those waves of emotion, the only thing left to do was rest. My only sane option was the same thing I wished for my brother: the ability to surrender to a hard-won peace.
I recently had the opportunity to see an icon of autism advocacy live and in person, and it was memorable. My mother learned that Temple Grandin was coming to our area to speak, so we went to hear her presentation along with a good friend—my one-time one-on-one TA. To be quite honest, I was not sure what to expect from Grandin. I was familiar with her mostly through what my mother has told me about her and the HBO movie about her life. I knew she invented a “squeeze machine” to cope with her sensory processing disorder and how she worked hard to overcome her fear of public speaking to become an outspoken autism advocate, but I had never heard her speak before. I felt hearing her perspective on matters of autism could be enlightening, so I looked forward to the presentation.
I feel the main topic of her talk was how different kinds of minds make different valuable contributions to society, and I fully agree with this sentiment. She also had many other amazing things to say on a variety of subjects.
Grandin’s presentation impressed me immediately because of the way she delivered it. She held herself well, and with a strong voice, she spoke her mind. She had certain strongly-worded convictions that she voiced throughout her talk, but she delivered them quickly and concisely, emphasizing her most important points in ways that made them stick in my mind. She also had a lively sense of humor; she often punctuated her speech with little jokes or references to current events that kept me focused. She knows how to keep an audience’s attention.
In addition, Grandin repeatedly used examples from her own life and her work in the cattle industry to illustrate many of her observations concerning the state of autism research and strategies for raising autistic children. She discussed which strategies worked well with her and have had positive results with others on the spectrum. She showed scans of her brain compared to scans of a typical brain which indicate she has a larger visual processing section than most people—an abnormality which has greatly influenced the way she thinks and perceives images. Studies of autistic brains indicate that our brains work differently from ‘neurotypical brains,” and this might impact our behaviors and influence our strengths and weaknesses.
Grandin spoke about how she struggled with algebra but had an easier time with art classes which she directly related to her own brain composition. I could relate to this because of my own struggles with algebra. My strengths lie with the written word. My mother has told me that I have always known how to read and that I started demonstrating this ability independently at a very early age. I also have the ability to understand the proper use of grammar, sentence structure, and punctuation with little instruction, and I have always spelled very well.
Many of Grandin’s experiences resonated with me because they were very similar to various aspects of the way my mother and father have raised me. Throughout the presentation, my mother and our friend exchanged glances because they recognized a lot of points she was making as strategies that had worked with me. Grandin related that much of her success is the direct result of the tactics her mother used with her as she was growing up. Some of her suggestions for people who have autism include: getting children and teenagers out of their rooms and away from all the electronic entertainment that consumes their attention and having them interact more with people and places in the real world; utilizing exercise as part of their routines; giving them “jobs” or chores to promote responsibility and independence; focusing and channeling the person’s strengths into constructive employment and giving people opportunities to contribute in a meaningful way to the well-being and enrichment of their communities. Grandin urged school officials to strongly consider keeping a wide variety of classes and extracurricular activities available to children so they may benefit from numerous fields of knowledge. She also stressed that by allowing multiple methods of teaching to be utilized, children who learn in different ways will have the same opportunities to learn as other children.
Grandin came across to me as someone who is very smart, witty, and resourceful. She and her family faced some of the same struggles and battles that my family and other families now face. I feel her ideas are worthwhile ones and a lot of good could come from their implementation. She was simply a joy to listen to and quite inspiring to me. I would like to continue to provide inspiration to the autism community and to the world the way Grandin does through my writing as well as public speaking platforms, and I hope others are inspired to do the same. With more positive voices out there, I feel that many people could be spurred on to do great things in the autism field.
My friend Dee called one morning in tears. Her doctor had recently put her on 50 milligrams of Topamax for her migraines. “I don’t know how Mickey can function on this drug,” she sobbed. “I can’t think. I can’t remember words. I feel horrible.”
At the time, Mickey was taking 550 milligrams a day.
Topamax is one of three anti-epileptic drugs he takes. The side effects are notorious. Google its nickname “Dopamax” and you’ll get more than 16,000 hits. As if brain fog weren’t enough, it can also cause kidney stones—a misery Mickey experienced firsthand.
Mickey has taken multiple medications to control his seizures for nearly 10 years. All of them have side effects. Some have been intolerable. Scary. One drug made him agitated and angry. Another made him spacey and tired. Hardest of all has been the cognitive hit. In middle school he was able to multiply and divide fractions. By high school he struggled with basic addition. Had the seizures caused the loss of these skills—or the drugs?
For years Mickey’s eyes haven’t sparkled the way they once did. Often he looks sedated. As soon as he gets home every afternoon, he announces, “No talking, I’m tired.” He climbs into bed and sleeps for hours. He wakes in a stupor.
I hate what the meds do to him, but I know he needs them. Seizures can be life-threatening. Sometimes, though, I’ve wondered if he is overmedicated.
During puberty the seizures were fast and furious. He’s 21 now. The seizures are less frequent. After a long stretch of Mickey being seizure-free last spring, the neurologist suggested we try to taper the Topamax. All summer and fall, we lowered it in 50 milligram increments. Mickey still took 300 milligrams, a hefty dose, but my husband Marc and I began to notice subtle changes. Was Mickey scripting less? Speaking more spontaneously? Several people remarked that he seemed “more conversational.”
“It’s like clearing the static,” Marc said.
We were in the car with Mickey one afternoon recently when I mentioned to Marc that a friend had just dyed her hair.
“WHO DIED?” Mickey was wearing headphones and listening to music. I was startled. How had he even heard me?
“No one died,” I reassured him. “I was talking about hair dye.”
“Die?” Mickey said. “Like passed away? Old or sick?”
“No, like dyeing your hair a different color. It’s spelled differently. D-Y-E. Remember how you painted your hair blue for April Fool’s Day?”
“Oh!” Mickey said. “They’re homonyms.”
“Did you hear that?” I asked. Marc was grinning.
“I sure did.”
Where had he dredged up that word? Okay, technically it wasn’t a homonym, it was a homophone. But still. I dimly remembered an elementary school teacher sending home a work sheet on synonyms and antonyms. That was more than 10 years ago. Had almost halving the dose on just one anti-epileptic drug made this huge a change?
Homonyms. I was stunned. Thrilled.
But the what-ifs and the if-onlys still pinch my heart. Who might he have been without those drugs?
This past week was not about Cameron. It wasn’t even about autism. I finally had a break from my daily compulsion of spending hours behind my computer, in hopes of discovering the perfect program which will pave Cameron’s path for the future. An entire week without a single visit to Think College! How did I manage such a clean break without relapse? Why, I got sick of course.
Cameron’s sister, Chloe, spent last weekend feeling unwell, and by Sunday afternoon I was feeling icky myself. Monday morning, Chloe woke up with a nosebleed which ended up requiring an overnight stay at the hospital. Yes … an overnight stay in the hospital from a nosebleed. Chloe has a bleeding disorder called von Willebrand Disease which prevents her blood from clotting normally, and when a nosebleed happens medical intervention is often required. This episode was a humdinger, so I didn’t waste much time with our usual home triage methods before heading for the ER.
Time always slows down when you’re in an ER. While Chloe was seen to quickly, the order to administer her medication to stop the bleeding seemed to be slow in coming. My flu symptoms were beginning to rear their head, and before long, I was sharing Chloe’s gurney because I just couldn’t sit up anymore. But I needed to advocate for my daughter’s well-being. I needed to convey to the staff that I know my daughter’s condition, and that treatment needed to get underway. My head was pounding, I had broken out in a cold sweat, and I was beginning to feel sick to my stomach. And Chloe wasn’t doing so hot herself. The medicine was administered, the bleeding stopped, but her blood work showed her white count was low. The doctor ordered a chest X-ray to rule out pneumonia. The doctors ended up admitting Chloe at the end of the afternoon. Luckily, my husband was not traveling last week, and was quick to come to my rescue. He took care of Chloe, and I went home and collapsed in bed.
Chloe was released around lunchtime the next day, and we had a follow-up appointment with her hematologist on Thursday. The hematology department is part of Pediatric Oncology. It seems so wrong that there should be such a thing as Pediatric Oncology. Chloe, her dad, and I were waiting in the Pediatric Oncology reception area, and a staff member from another part of the hospital walked in. She looked at the three of us on the bench together and gave us “that look.” It was a look of such heartfelt pity and sympathy … and it made me bristle. Of course, when you’re in the Pediatric Oncology department, everyone assumes your kid has cancer. And of course, kids having cancer is just wrong. But even if my child did have cancer, I wouldn’t want to be pitied. Just like I don’t want to be pitied because I have a child with Autism Spectrum Disorder. We’ve all heard the well-meant encouragement, “God only gives special children to special parents.” Well, all children are special. Parents? Maybe not so much. But all children are special and come with their fair share of problems. All we can do as parents is manage those problems to the best of our ability until they’re ready to manage the problems for themselves.
So even though I took the week off from autism, I didn’t take the week off from stress. But even a lousy vacation can provide a new perspective. I certainly have a fresh perspective on what’s important and what deserves my energy. I’m feeling better in more ways than one.
I will never forget that moment when my son stood looking at a snapshot of himself standing on the beach, wearing only a pair of swim trunks. He weighed almost 300 pounds then and for the first time I could see he did not like what he was looking at. The expression on his face was very sober at first. Then I noticed the tears welling in his eyes. His expression turned to one mixed with both sadness and growing rage and then in a gruff, angry and tearful voice he said, “Put it up!” Then he slapped the picture face-down on the highest shelf he could reach in Bill’s office and ran into the other room crying.
My heart breaks every time I think about that day. We had tried everything we knew to help him lose weight. We tried walking every day, going to the gym, and workout videos. We tried diets that were low-calorie, low-fat, low-carb, wheat-free, gluten-free, dairy-free and taste-free. Nothing worked. But then something happened which we found remarkable.
We noticed Cody was suddenly paying attention to anything which highlighted facts and statistics regarding diabetes, obesity and heart disease. If a news segment on one of these topics came on, we couldn’t get him to move until it was over. Any commercial advertising products for people with these illnesses had to be watched without interruption. Walking by those products in the store often triggered a five-minute discussion. Cody would basically repeat a commercial script verbatim and then ask, “Do I need this yet?” as he stood nose-to-nose with me, holding the package and tapping it with his index finger with great vigor.
Thankfully, Cody never got to the point where he became diabetic or suffered any other kind of severe health complication due to the excess weight he was carrying. Then, all of a sudden, the pounds started coming off. The change came from a diet of Cody’s own invention. It’s a very simple plan where Cody eats and then says, “I’m done!” The difference is that now there might be food left on the plate—and no more seconds and third helpings—portion control at its finest. And since Cody has always seen any beverage left unsupervised as being up for grabs, I started placing glasses of water on the table. As expected the glasses would mysteriously be empty before long.
A year passed and Cody dropped 50 pounds. Bill and I had promised him we would have a pizza party once he had reached that point. And we did it, but with anxious reservation. Pizza is one of Cody’s favorite foods and we had hoped that he would enjoy his party in moderation. Sure enough he did. He ate only a couple of slices and then came the words he seemed to have adopted as his new mantra. “I’m done!”
This was a striking contrast to the times when he used to inhale almost an entire pizza by himself. We were both elated and extremely relieved.
The next year another 40 pounds vanished. The scale that once read 298 now read 217. He was now just above what would be considered a healthy weight for his height, age and bone structure. I was so proud of him!
That was about two years ago and not only has Cody kept those extra pounds off, he’s lost another eight. At 209 he looks awesome. He no longer has puffiness in his face, dark circles beneath his eyes, nor a spare tire around his mid-section. His whole being beams with energy and vitality. And the biggest reward was when Bill took down the photograph that had remained face down on that upper shelf for nearly four years.
He showed it to Cody as they both stood in front of the bedroom mirror. I saw my son’s eyes sparkle with pride as he looked back and forth from the picture to the mirror. The grin on his face was priceless. He even began to tease Bill as he exclaimed, “My belly’s flatter than yours!”
Visible evidence of high self-esteem in Cody has been small and fleeting in the past. But there was no denying its presence at this moment. And oh what an amazing moment it was!
It's time to tell the truth, time to stop hiding behind strong cups of coffee and the rush of deadlines. Here it is: I've been addicted to stress, and it's time to break the cycle. So, as of January 3, I'm in a gradual process of caffeine withdrawal. Let me tell you, there is a reason that caffeine withdrawal is classified as a mental disorder in the "DSM-5" … quitting is not easy.
Yet as I work to lower my stress levels, I find that—to my surprise and delight—I'm taking lessons from my younger brother. Here are just a few of the techniques I've learned from Willie, as well as the scientifically supported reasons to try them yourself:
When your stress starts to mount, take 10 deep breaths.
When Willie starts becoming agitated, he takes 10 deep breaths, counting aloud. In the article, “6 Breathing Exercises to Relax in 10 Minutes or Less,” Jordan Shakeshaft writes, “Controlled breathing not only keeps the mind and body functioning at their best, it can also lower blood pressure, promote feelings of calm and relaxation, and help us de-stress.”
When you're desperate for relief, stop, drop, and roll.
For Willie, this looks like rolling himself into a rug, burrito-style. For me, it looks like using a foam roller to massage the knots in my back and shoulders. In any case, stop, drop, and roll means recognizing escalating stress and taking action to mitigate it. As Ange DiBenedetto writes in, “Stop, Drop and Roll is Good Advice,” “Stress … is like fire: it moves fast, devours resources and causes lasting damage …. This simple mantra is the ideal emergency response.”
When you crave consistency and structure, create a routine that works for you.
Each day, Willie writes out a list of tasks on his regular routine, and enjoys making check marks next to each completed item. As Amy Griswold, family life educator, writes in "Reduce Stress with Family Routines and Rituals," “Whatever the cause of stress … predictable routines and meaningful rituals are related to healthier outcomes.”
When everything gets to be too much, it's okay to escape into a fantasy world for a little while.
I used to feel guilty about unwinding with a TV show (or two!) at the end of a workday. After all, shouldn't I be relaxing in a “healthier” way? Maybe not. As Martha Beck writes in "Martha Beck's 5 Best Pieces of Advice," “I think TV is like a vitamin: toxic if taken in large quantities, but also essential for social and personal well-being.” Temporarily entering a fictional world can better equip you to deal with difficulties in the real world. And if you can find a show that makes you laugh, that's even better. Willie sings (and laughs) along with Youtube videos; “Beautiful Kittenfish” is a favorite. Now, I recognize this as a health-promoting activity.
Spend time with your favorite animal.
Part of Willie's daily routine includes walking, feeding, and practicing obedience skills with Chevy, the family dog. Willie loves dogs, and caring for Chevy has had benefits beyond stress reduction. Connecting with pets can help individuals with autism with socialization, encouraging them to make connections. Lisa Fields quotes researcher Alan Beck in “6 Ways Pets Can Improve Your Health”: “‘Animals change the classroom environment and help integrate those [with autism] …. Once the children get involved with animals, they view each other more positively and work together better.'”
Find someone you love and trust, then lean in.
I've written about my brother's habit of ducking his head and leaning on my shoulder—his version of a hug—and I've been touched to hear from readers that their loved one with autism does likewise. As Michael Ravensthorpe writes in, “Hugging loved ones can reduce stress and lower blood pressure,” “According to a new study by scientists at the University of Vienna … hugs also have a positive effect on our long-term health.” The article goes on to note that hugging someone you don't know well to be “polite” can be detrimental to your health. I love that science has discovered something that my (hug-selective) brother seems to have known all along.
There are many different scenarios in working as a Supported Employment Manager with adults with autism. The best-case scenario is for everyone on my caseload to be employed with jobs working full time, or even two different part-time jobs working a full day. The worst-case scenario is that no one on my caseload is employed, or to have to pull individuals out of a jobsites that they liked. With my job, both scenarios are something I have to deal with and think about every day.
One situation happened when I was first hired. There were two individuals who had been working at a grocery store for a few years when they were assigned to me. The store loved both of the individuals and the staff that was working with them. One of the individuals stocked the dairy products and the other individual worked outside collecting carts. When a new store opened across the street, the store we partnered with started slowly cutting back the individuals’ hours to give other people more hours. The individuals went from working two days per week for six hours to only working four hours for two days, to only working one day per week.
Needless to say, once the new store opened, it hurt our partner’s business in a big way. Now the individuals worked on a “call-as-needed” basis, and typically worked only one day per month. These were two individuals used to working all the time. Even though they each held another part-time job, they found themselves with nothing to during half of the work week. We needed to train them for new jobs, while searching for new employment opportunities for them. So I went to the other part-time employer to see if more hours were available. Fortunately, this employer was a well-known gym chain and had new gyms opening up in the area.
Having to pull individuals out of jobs that they enjoyed was very hard. However, if they are only working one day per month, it is often not worth it for them to keep those positions. And it never hurts to ask for more time with a part-time employer because they may need the individuals and not even realize it until the idea is mentioned. The key part of my job is to avoid getting upset when these scenarios come about, because they are going to happen. I just need to “roll with it,” and work around it the best I can.
A year ago I started writing this column, observing (complaining?) that Reilly's winter break was too long. It's still too long. But I guess we've all adjusted to the college schedule now that he's in his second year at the NYIT VIP program. He still spends too much time sleeping during the day and staying awake to the wee hours of the morning for my taste. A year later, though, browsing through my columns, I can see growth and development.
Reilly has three college-credit courses under his belt, and is taking two more next semester. One, Speech and Communications, is the one he transferred out of last semester for scheduling reasons. He wants to take it, even though it promises to be pretty challenging for him. Communication is not his strong suit, and he has some vocal tics that can make speaking fluently somewhat difficult. I'm proud that he's giving the class another try, even as I'm worried that it will be hard.
His almost year-old relationship with his girlfriend, Ashley, seems to be going strong—a development I would not have foreseen a year ago. I can't help worrying that he doesn't know how to be a good boyfriend, but he's not welcoming of my advice. Ashley's birthday fell while she and Reilly were apart for winter break, and I asked him if he had called her. “No, I said Happy Birthday on Facebook,” he replied impatiently. “But Reilly, you probably should call her on her birthday. It's what boyfriends do,” I argued. “Mom, leave me alone.” End of conversation. He could use some relationship coaching, in my opinion, but I'm definitely not the one to do it. I guess he's on his own.
He might be making some progress on the hygiene front, though it's hard to tell. Right now he has a scruffy beard—he hasn't learned to like shaving. It takes less nagging to get him into the shower, though, and the dental hygienist says he's brushing a little better. (Though there is a lot of room for improvement on that front!)
For the most part, Reilly has been agreeable and easy on this break, even doing some chores with little complaint and coaxing. He got on well with his siblings and enjoyed the company and chaos of visiting relatives over the holidays. No major meltdowns (yet), but we still have a week of vacation left. Fingers crossed!
Reilly is happy at NYIT, has good friendships and is well-liked by students and faculty. He doesn't seem to be struggling with anything, at least not that he will acknowledge. He's hopeful about the future, and willing to transfer to another school for a major he's interested in, even if it means leaving behind the familiar, and his friends and girlfriend. He has written a decent essay for the application process, with very little nagging on my part. All good.
His counselor at school emailed me before the break with news of progress as well. She said Reilly was clearly stepping out of his comfort zone to initiate conversation and had taken a quiet freshman under his wing at the student coffee house one evening. He made an effort to talk to the student and they worked on a puzzle together. It spoke to an emerging awareness and empathy, I thought, though he claimed not to know what she was talking about when I mentioned it to him.
I have no shortage of worries about his future, among them how well he understands his disabilities and limitations and his willingness and ability to work at coping skills. Maybe that's the topic of another column. But as I look back at the past year, and contemplate the one ahead, I realize we're doing OK. Maybe better than OK.
Even though the boxes of decorations are back in the attic and the cookies have long been eaten, my thoughts still turn to Christmas. The holidays are always a reminder of how fast the year flies by, but this year I was also amazed by how much Cameron has grown emotionally.
The weekend before Christmas, Cameron was given his first opportunity to stay home alone. My husband made a spur-of-the-moment suggestion to go to New York City and immerse ourselves in the holiday spirit Big-Apple-style. Cameron was invited to come along, but we pointed out that he would miss work, and that staying home would be a good step for him. He very willingly chose the weekend of solitude, and he flourished. He surprised me at dinner one night prior to our departure by asking a safety-related question: “Isn’t there supposed to be a hose on the end of the fire extinguisher?” I had been meaning to quiz him on the fire extinguisher location before we left, and he beat me to the punch. Clearly, he was processing the importance of being the only one at home. And he did great. No problems to report, other than an issue with iTunes, which he managed to resolve on his own.
While we were away, Cameron wrapped gifts that he was giving family members. Aside from an unsolicited suggestion from me regarding a gift for his sister, Cameron independently went about acquiring gifts for the family. Cameron is taking art at school this year, and created a beautiful array of ceramics, which he used as gifts. These items were in the school’s art show, and Cameron refused offers from would-be buyers visiting the show, because he had planned these as gifts all along. He also had the opportunity to obtain gifts at the school’s annual gift market, where students are allowed to shop from donated items, and pay for their items using positive reinforcement points given throughout the year. It was clear that Cameron had taken his gift giving very seriously, and put thought and heart into every gift he gave. All recipients were quite touched by his efforts. Cameron pretty much stole the show with his gifts this year.
Cameron was also very gracious in receiving gifts, which has not always been the case. (Imagine a stiff, forced smile and “thanks” uttered through clenched teeth as he tosses the gift aside.) This year, Cameron was very appreciative of receiving a gift, and appropriately responded to the giver without fail. His exchange with Mimi, my mother, was particularly touching. Mimi has been adding to Cameron’s ceramic dog collection for many years, and this year was no exception. Cameron opened this year’s dog, and was clearly awestruck.
He asked, “Is this a copy, or is this the original?”
I didn’t recognize the dog he was holding, and was curious about Cameron’s reaction. Mimi clarified that it was the original, and I then realized it was a dog that had sat on her bookshelf for years.
Cameron said, “Wow! Thanks Mimi. I’ll treasure this. This is really special.”
Mimi had to wipe her eyes, and she doesn’t have to do that very often. I think everyone in the room was blinking back a tear or two.
Admittedly, I often have a hard time embracing the spirit of the holidays. But never in a million years would I have predicted that my son, with all of his social and communication challenges, would be the one that epitomized the meaning of the season. Cameron’s holiday spirit this year was truly the best gift I could have ever hoped for.
One of the best years of my life so far was 2013. Among some of the high points were: finishing my first book, continuing my writing at Autism After 16, graduating with a Master’s degree, getting my first full-time job at Autism Speaks, joining a panel for the Autism Society of America and starting a nonprofit organization. This was also a year that provided a lot of opportunities to celebrate good times with my friends and family. Something that stood out was the number of my friends who tied the knot! I saw Facebook status after Facebook status announcing another friend getting engaged.
I’m pretty excited about how well 2013 went for everyone. One New Year’s resolution I want to keep, however, is to not be pressured into getting married too soon. I also want to finish a short documentary on growing up on the autism spectrum, finish my second book, and continue to work on the rest of my ongoing jobs and projects.
As regards my first resolution, my initial thought for this was that just because my friends are getting married doesn’t mean I have to as well. One thing I’ve noticed from a lot of younger self-advocates is the pressure they feel to follow the trends of their peers, especially when it comes to relationships. With social media and the age of technology it seems like that pressure gets escalated at times because everything is more out there in the public eye.
Personally, I’ve had some great relationships and some bad relationships. What I’ve learned from putting myself out there though is that a relationship is a commitment. Before I can consider any of this I need to be able to commit. With my current schedule and workload I feel as though that would be almost impossible to do right now. It came to me a few weeks ago, while I was getting ready for a Halloween party, that I will be ready for it someday. That has made me feel really good about the thought of marriage.
Ever since I was a kid I knew I wanted to get married one day. Thinking about all the progress I made convinces me that anything is possible. As I get more comfortable with my work and more comfortable with transporting myself from place to place, I’ll be able to explore the possibility of a relationship. Then hopefully one day I can get married to someone I love deeply. This is something I know I want.
A final note to the young self-advocates out there: I encourage you to do what feels right for you. If you want to try to have a committed relationship, then you should do that. At the same time, if you don’t then that’s ok too. Temple Grandin has been an amazing role model for our community and has never wanted to get into a relationship. She is comfortable being just who she is. Doing what feels right for you is a great resolution! Set resolutions every year that will help you improve, make you feel comfortable in your own skin and maybe most importantly, that make you happy.
It happens every year at the holidays. Every time the new year approaches, I want to revisit the books I loved in childhood. Instead of being productive, I want to read the complete works of Laura Ingalls Wilder and Louisa May Alcott. In the midst of everything new, I want something old. And whenever I read these books, I'm struck by how the world has changed. I'm amazed at the amount of work that was required simply to stay alive back in their day. I relish all the sowing, reaping, churning … all those old-fashioned verbs. I come away from these books with gratitude for all I have, and a resolve not to take opportunities for granted.
And as I read about days gone by, I can't help but think of rural Arizona, where my grandparents used to live. There, the nearest post office is a 20-minute trip, mostly on dirt roads. My grandparents had lived on five acres there since before I was born. But this year, they've made a big move: relocating to southern New Jersey. Most of me is happy for them, but part of me is sad. Their unique cordwood house up for sale, and the summers Willie and I spent there seem farther away.
To be sure, we only spent about three weeks in Arizona each summer, but three weeks of summer is an eternity when you're young. And it was a world so different from that of suburban New Jersey. Instead of paved roads, dirt prevailed. Instead of neat laws, barbed wire and iron gates were the order of the day. When Grandma did laundry, she used an old-fashioned washer with a crank turn. I remember her telling me never to put my fingers near the crank, never to let my hands get too close.
Willie and I would watch her do laundry, awed by both the contraption and her capable hands. Instead of a dryer, Grandma had clotheslines strung from the barns to a broken-down old truck that rested in the center of the yard. (Mom tells me that, when it was time to move the vehicle off the property, they turned the key in the ignition and it still ran. I couldn't believe it.) The truck's white paint was peeling, and there was a plastic owl perched atop the rod that held the clotheslines steady. I remember the sound that fake owl made, creaking faintly as it turned around and around when the dry wind blew.
While Mom and Grandma washed the clothes, Willie and I would hang them out on the line to dry. We'd hold the rough, weather-worn wooden clothespins in our hands, and cling to the sheets. When the wind blew, it was hard to keep a good grip. But if we let go, dirt would swallow an item immediately, and it would have to be washed again. In such a place, the world described in “Little House on the Prairie” didn't seem so distant. I spent at least one summer wearing a sunbonnet.
Willie and I would collect the eggs and feed the chickens in the morning; we loved to do that chore together. I'd close the door to the roosting house and check the simple latch, and Willie would race about, giving the chickens a fright. He loved to chase them around the coop, to watch their feathers ruffle as they squawked in protest. As I once wrote, “Allowing my brother to [chase chickens and roam around] was an essential part of my parents’ responsible caregiving … because it gave Willie a chance to be himself, to embrace the dignity of personal risk.”
The summers of childhood are no more. And in most respects, my current home—a small town in Alabama—is nothing like the cordwood house in Arizona. Yet as I step into the house my husband and I are renovating—a 113-year-old space—I can't help but feel close to my brother, and to those long-ago summers. And I can't help but believe in the magic of those old books I love. That's what brings me back every year: the subtle magic of family, the assurance that we'll carry on together.
I would first like to say that my family and I had a very nice Christmas. It was great to enjoy this special time and see my extended family and friends again, and I was able to do a lot of fun and exciting things. However, as the calendar year was turning from 2013 to 2014, our family got a nasty surprise which somewhat dampened our spirits for the coming of the New Year. On New Year’s Eve, when we were out shopping for New Year’s Day treats for a party we were to attend, one or several individuals broke into our house and burglarized us. We discovered we were missing certain items from our home on the morning of January 1, and it certainly came as a shock.
This meant, of course, that people we did not know had gone through our home picking and choosing what they wanted to take from us. This included going into my bedroom, rummaging through my possessions, and then stealing them.
As anyone can imagine, this event was quite alarming to all of us, and we called the police to report the theft. Whoever they were, they worked quickly and were careful to keep their presence a secret by taking only certain items, as evidenced by the fact that we only discovered what they had done well after they had left.
My parents immediately started to devise a plan of action to ensure this never happens again, and will be implementing some new safety features for the house. We also warned our neighbors to be on their guard.
My parents have always taught me that I must be aware of what is going on around me at all times and to use caution when I am in parking lots and stores and to pay attention to who is near me and what they are doing. This has not been an easy task for me to do because of my sensory issues and having everything come at me at the same time when I am out and about. I also struggle with reading people’s body language and facial expressions, so it is not always easy for me understand their intentions. My parents have also taught me to be cautious about how much personal information I give to people I do not know, such as giving out vital information about our recent vacation like when we would be going and how long we would be gone. So, I know I must be diligent as I continue to work on these skills so I can take action if I need to.
The biggest lesson, however, that I have taken away from this incident is that events like this can come from anywhere and strike at anytime no matter how cautious you are or how many precautions you take to keep yourself and your family safe. It is not a good feeling to know that even though my parents and I are very careful, things like this can happen and did happen.
This incident has reinforced my understanding that I must remain cautious when circumstances call for it. My family and I are going to make the changes we think are necessary to make our home more secure and move on into the New Year with a feeling of optimism that things can only get better. To be sure, I would like the rest of the year to be filled with less alarming moments, but 2014 certainly got off to a surprising and jarring start!
I wasn’t prepared for the question.
The group of women had settled into the warm chatter of holiday updates. Tales of travel schedules, meal preparations, and family traditions punctuated the restaurant’s welcoming ambiance.
“So you have two kids on the west coast now?” one mom asked me. “Are they coming in?”
My oldest had just moved to Seattle two weeks before and I hadn’t seen my youngest in 105 days since in college he now trains through Thanksgiving with the wrestling team.
“Yes, they are coming in, as is my sister and her family from Georgia. I’m so excited to see everyone,” I babbled on. For 12 days, I would host from two to 13 people in my home. I’d been preparing for weeks. I’d shopped, cooked, frozen, meal-and-activity planned to the hour. I’d even created a loose-leaf notebook with daily agendas and menus to help order the anticipated chaos.
“And when does Madison arrive?” another mom asked.
I stopped short, with that deer-in-the-headlights feeling as I could sense the energy draining from my voice. I paused to gather the best answer, the answer another mother of a child with autism would understand. I shifted in my wheelchair and laced my hands that had started to sweat.
“Well, she doesn’t come in with the rest of the family. It’s just too much activity for her,” I said, looking down at my lap and fumbling with the napkin. “We have what I call a ‘floating holiday,’” I said, raising both hands to make imaginary quote marks in the air, “and, well, we celebrate after Christmas.”
I flashed a quick smile and cleared my throat as I continued, “She adores going to her Winter Camp so our tradition is to have Madison’s Christmas either on the way to Camp or home from Camp.” I smiled again and hoped my rationale made sense. “You know Madison has very little language, but she will say, “I want camp please.” I smiled again. “She’s been going for years.”
The mom sipped her water and nodded sympathetically as I heard the other moms at the table swap details of their hectic holiday plans and the extraordinary ways they were including their children with autism.
“We tried several times to have Madison come in from her residential placement and stay over Christmas Eve,” I said, twisting the damp napkin. “She was confused and acted out. One year she decided to use her bedroom floor as a toilet. The other kids had to clean it up before we could open presents Christmas morning. It was a mess. So was Madison,” I said, staring at my lap again. “It was difficult.”
I welcomed the waiter’s interruption of my far-too-detailed explanation. After all these years of thinking and rethinking what’s best for Madison, what’s best for my family, and what’s best for me, you’d think I’d be confident of my answer to a simple inquiry.
But I wasn’t.
Are we ever 100 percent confident we are doing the best thing for our child, that we’ve made the right decision? Perhaps we feel like we are doing the best we can. But is that answer ever good enough?
“You may make the right decision, Becky,” said a wise friend who’d witnessed my struggle first- hand with Madison’s placement. “But it may not be perfect.”
She’s 21. She’s transitioned well into her adult residential and day program. She is surrounded by people who give her good care and continue to show their steadfast love for her.
I see her regularly, often weekly, and cherish each visit she makes home, no matter how brief. Just like her siblings.
And for me, for now, that is good enough.
As I was finishing up this column, I decided to Google “perfect” and “confidence.” Here’s the quote that made me smile—and think:
Once you accept the fact that you’re not perfect, then you develop some confidence. ~Rosalynn Carter
I wish you all a Happy, confident, New Year!
Happy New Year!
While in the past I’ve listed my goals for the coming year, my only resolution for 2014 is to find an appropriate post-secondary placement for my son.
Cameron was not accepted into the program we both had high hopes of his attending this fall. I knew it was a long shot, but my hopes were still high. And in my true parenting-by-emotion style, I was not very delicate when I gave Cameron the news. I found out quite by accident myself, through reading Cameron’s email. I have a perfectly legitimate reason for reading Cameron’s email: It was the week before Christmas, and I was trying to make my Christmas morning easier by setting up the Kindle Fire we were giving Cameron so that it would be ready to go out of the box. This entailed setting up an Amazon account in Cameron’s name. I went into his email to delete the “Welcome to Amazon” emails in order to keep the Kindle a surprise. When I opened the Inbox, in addition to the email from Amazon, I noticed two emails from “Admissions.” They were both opened. The one received most recently contained the bad news that he was not considered a good fit for the program. Reasons stated were “motivation” and “problem solving.” These reasons surprised me until I saw the second email from Admissions which had come a week earlier. This email asked Cameron to respond if he was still interested in the program. I mentioned both of the emails had been opened, right? And neither had been brought to my attention, nor had Cameron taken the initiative to respond himself.
Now in fairness to Cameron, his lack of response to the “are you still interested” email was not the reason he wasn’t admitted. Coincidentally, I had called the Program Director the day after Cameron had received the email—not knowing about the email inquiring as to his thoughts on attending—and expressed our continued interest. But that didn’t make me any less furious at Cameron for flat-out ignoring the emails. He clearly didn’t understand what the emails were, and instead of asking, he just chose to ignore them. So all sorts of thoughts start going through my head. Is he really ready for the type of program I think he needs? Have I overestimated his abilities? Will he be okay with the level of independence required to succeed in such programs?
I’m sure Cameron sensed something was wrong as soon as the school bus pulled onto our street that day. I really tried to consider the disappointment that Cameron would feel upon learning the news, really I did, but frustration trumps compassion, and I couldn’t contain myself. My “dissatisfaction” was obvious before Cameron had a chance to set down his book bag. Cameron was clearly disappointed by the news … Or was he disappointed by the way the news was delivered? Cameron seems to learn a lesson quickly when I borrow Mrs. Potato Head’s angry eyes, and I think this lesson hit home in record time.
After I’d had my opportunity to air my disappointment, I took a deep breath and tried to figure out what was going on in Cameron’s mind. In a calmer moment, I asked him how he felt about the news. His response was, “Well, I’m actually not too surprised. I didn’t do my best in the interview.”
Lessons learned: Cameron will try to do better in upcoming interviews. Cameron will attend to his emails, and ask about ones he doesn’t fully understand. I will take a deep breath before reacting, and begin the search anew. (Maybe I won’t put his email address on future applications. No … Where’s the sport in that?)
While holiday stress is a common phenomenon among many people, the closest we typically get to that around our house is the anticipation of Christmas Eve. It is a night we all look forward to each year. But the suspense we feel is honestly a building of sentiment and fondness brought on by memories of many of Christmases past. However, this year has been very different due to a round of rather somber events.
Cody’s great-grandmother—who he calls Grammy—is now in her early 90s and her health is deteriorating quite quickly. Due to hospitalizations, doctor appointments and her fragile state, Cody hasn’t been able to visit her for quite some time. We thought it was important to take him see her at the first opportunity. When we did it was written all over his face that he knew something was very wrong. Attempts by everyone to put up a good front were useless. Cody knew Grammy was not well. All the way home his demeanor was quiet and solemn. Then as he sat in the back seat staring out the window, in what amounted to little more than a whisper he said, “I’m running out of time with Grammy.” I had to look away so he would not see the tears rolling down my cheeks.
I also recently wrote about the possibility that my sister Connie may have cancer. After eight weeks of tests, biopsies and brain surgery, we were painfully made aware that the possibility is now a reality. Doctors removed one tumor from her brain but she has at least four more lesions and a large mass on her lung. Sadly, her prognosis is grim. The doctors predict that she has less than a year to live. It has left me with a sense of urgency to make the best of my time left with her and an strong desire to develop a closer relationship with my remaining sister and my brother.
Cody has been through the loss of many loved ones throughout the years. When Cody was 10, we had to tell him his Grandma Jackson—my mother—went to heaven. She was followed by my sister, Becky, who died from bone cancer a year and half later. Not long thereafter, my father suffered a massive heart attack and died instantly. Then Cody’s great-grandfather (Grammy’s husband) passed after battling a long illness. A few years later we suffered the loss of my brother’s oldest son. His passing was especially difficult because, first and foremost, he had a heart of gold, but also because he was so young. And now, unless God performs a miracle, Connie will be my second sibling cancer will have claimed. To add to it all Cody’s Nana—Bill’s mother—who lives with us is in frail health as well.
While Cody’s resilient nature has brought him through loss of loved ones in the past, I worry how he will handle so much all at once at what is supposed to be the most joyful time of the year. While Bill and I have tried to keep our emotions in check, Cody still senses our unrest. When he realizes something isn’t right with one or both of us he becomes nervous, which leads to pacing back and forth, rounds of rapid-fire echolalia, throwing up and hitting his head with his fist. Then it all ends with a total meltdown.
With all that is happening right now the last thing I want is to see my child go through that kind of turmoil because he is internalizing our emotions along with his own. And the only way I know to avert a tragic breakdown for Cody amid such sadness is to set aside my own distress and to focus on the meaning of Christmas for our family and the traditions we keep.
To start our celebration on Christmas Eve, we make a smorgasbord of goodies for everyone to graze on throughout the day. In the evening we light lots of candles in our family room and sit in front of the fire having a cup of hot chocolate while I read from Scriptures which tell of the birth of Jesus. Cody listens with undivided attention. We all love the story and the warm feelings of love, peace and joy which fill our spirits. It is on this night when the lights that adorn our trees and the Christmas decorations throughout the house seem to be even more beautiful than on any other night of the season.
We then attend midnight mass. Pastor never fails to render a most poignant sermon which seems to reveal new and more thought-provoking aspects of the birth of Christ each year. At the end of the service everyone in the congregation is given a candle. The lights overhead are dimmed to low and the pianist plays a soft introduction to “Silent Night.” and everyone begins to sing. Interestingly, I never seem to notice anyone singing off-key. It’s just so perfectly lovely.
An usher lights a candle and the light is passed from one congregation member to the next. Finally the entire sanctuary is filled with candlelight. It is like a sweet contentment just permeates the very air we breathe and sometimes I swear I can see sparkling beams of light which radiate from the cross which hangs high above the alter, out across the parish touching and soothing each precious soul. Just thinking about it brings warmth to my heart and a smile to my face.
When we finally get home Cody is all giggles and anxious to get to bed so Christmas morning will come. Bill and I set to work on putting the presents under the tree and filling the stockings. We might enjoy a glass of wine and some time together, but before long dreamland beckons us.
When we wake the next morning I love to sit and watch the smiles on the faces of my family as they open their gifts. That’s followed by a wonderful dinner, togetherness and a sense of satisfaction that defies description.
It is my prayer that God will help me make this tradition more special than ever this year for all of us, but for Cody in particular. Sometimes it is in the face of loss that we are most able to embrace the real gifts we’ve been given.
Isn't it delightful when your own words come back to guide you? Since this is the final edition of “Leaving Normal” for 2013, I spent some extra time pondering what encouragement I might offer to autism families and fellow siblings. And surprisingly enough, I found the answer I needed in a prior column. This past April, I wrote a column entitled, “Awareness All Year.” In it, I assigned each month an autism awareness task … each month, that is, except for December. This month's “assignment”? “Take a break, rest, and enjoy the holiday season with your sib. Your presence is the greatest gift you can give.” I've been thinking about what that means, to give the gift of presence. Here are a few ideas I've put into practice and found helpful:
Go “hands free.” Personally, I've found this mantra a potent cure for my addiction to multitasking. The term was popularized by Rachel Macy Stafford of Hands Free Mama; in her words, the heart of a hands free practice is, “... to let go of daily distraction and place [my] focus on someone or something meaningful.” For example, I change my relationship to technology when I'm visiting my family's home. Often, I choose to silence my phone and leave it in my purse in order to be fully present. I try to enter into my brother Willie's areas of interest; this past Thanksgiving, I sat and watched "The Jungle Book" with him for half an hour. True, it can be tough to resist the temptation to do something else simultaneously (and I've certainly seen enough Disney movies in my time)! Yet I occasionally watch with Willie because spending time with him is worth it. The same principle holds when we're connecting at a distance. Though the siren song of multitasking often calls out to me, I close my browser and to-do list file so that I won't look elsewhere while we're talking on the phone or on Skype.
In turn, I've noticed that I'm more aware of my screen time when I'm staying with my family. Willie gets agitated if he watches online videos for too long, so our parents monitor his computer use. Since he can't remain on the computer for hours on end, he's gained the ability to transition to a new activity. (Alas, I can't always say the same for myself!) Watching Willie walk away from the computer after a set period has been a helpful reminder to limit my own screen time.
Use your words to connect with those you love. It sounds so simple, but it can be surprisingly difficult to share feelings and experiences with our family members. As fellow AA16 columnist Rose Donovan writes in Using Our Words, “... There's a lot that families like ours don't say to each other. We assume a lot, and often we're just too busy living our lives to check in with each other and share our perspectives and our feelings. We're in it together, yet isolated in the experience.” I can relate; when Willie first started struggling with aggression and self-injurious behavior, I felt the need to “be strong” and put on a brave face. I'd try to hide feelings of sadness and hurt, tucking myself away in a closet when I needed to cry. Now, I'm making an effort to let go of that pretend strength. Being Willie's sister has taught me that being vulnerable and honest takes the most courage.
Remember what's precious. Since Willie struggles with self-injurious behavior, our parents have created scripts to remind him not to hurt himself. If he bangs his head, they'll say, “Willie, is your head worthless?” He'll reply, “No! My head is precious,” and sometimes, that reminder helps him stop. Likewise, if you find yourself overwhelmed by responsibilities during this season, remember: Your head (and your sanity) is precious. If holiday tasks are stressing you out, try simplifying. You might send digital holiday greetings rather than printed ones, or shop online rather than braving the mall. (Better yet, shop online and support autism employment at the same time!) As 2013 draws to a close, choose to protect what's precious: your head, your heart, your presence.
My Thanksgiving vacation in Florida was very relaxing and fun. My family and I greatly enjoyed soaking in the Sunshine State’s copious amount of refreshing rays, a nice change of pace from the brutal winters we typically find ourselves in. We had a great time staying with my uncle and also enjoyed some neat experiences including walking the beach on the Gulf of Mexico, a jaunt through a luxurious garden where we saw birds that I have never seen up close before like a crane, and a tour of some unique shops including Hulk Hogan’s beach shop. I love WWE, so visiting Hogan’s shop was a highlight for me. The icing on the cake, though, was the two days we were able to spend at Disney World, where I picked up some valuable insights into my life that are still lingering in my mind.
One aspect of my time visiting Disney that left a strong impression on me was how I continue to learn to cope with large crowds. I had purchased two guidebooks on Disney World to help me plan our trip, and I had made sure to schedule our visit for days in which, according to my guidebooks, the parks would not be very crowded. Even though we did go on days when the parks should not have been at peak capacity, I was surprised and a bit put off to see such a large number of people as we entered the main gate. The Magic Kingdom in particular was densely populated, a proverbial sea of humanity.
There is a part of me that still cringes slightly when I am in the middle of a crowd. I find myself anticipating the uncomfortable feeling that always comes over me when I am surrounded by people, especially if I feel I am packed in like a sardine with little sense of direction. For me, it becomes especially pronounced when I am literally brushing up against other people’s shoulders and the noise level is high, a situation which played out seemingly everywhere we went during our first day.
When I was younger, I would lash out at people who were too close to me by either biting them or pushing them away from me. I felt closed-in upon, and I was unable to handle all the stimuli all at once. As I have gotten older and with the help of some great therapies, I have been able to handle being in crowds a great deal better. So, even though I had the same initial feeling I always get when faced with a large gathering, once I realized that the crowds would likely last all day, I decided to simply “go with the flow” and enjoy my time in the park like everyone else was doing. I had a much more positive experience as a result. I was greatly relieved, though, when, during our second and final day at Epcot, the population was much more spread out.
I have also continued to reflect on the art of proper scheduling, a subject which has been on my mind quite a bit lately. During my first day at the Magic Kingdom, I was enamored with the idea of an interactive trading card game I had read about in one of my guidebooks. Playing meant that we needed to move from one game “portal” to another in the park to complete the game. It sounded like a really cool idea to me, and I did not want to let go of the idea of carrying through with the game to the finish. Unfortunately, this meant that my family and I were just rushing from one position to another in the park as I looked for the next “portal” to continue the game. My parents had to step in and explain to me that I was missing out on the activities I had originally chosen to do because I was not taking in the rest of the park’s attractions by just doing this one activity. My parents also explained that we could play the card game the next time we head to Disney after we have experienced more of the overall attractions, which helped me to break away from it. So, we decided to get back on track and participate in the rides and shows I had initially selected. Even though a bit of time was lost, I had much more fun this way and made many lasting memories.
One last important concept I took away from my time at Disney World was a greater sense of personal responsibility toward the earth. Our second day was spent at Epcot, specifically the “Future World” section of the park dominated by Spaceship Earth (that giant golf ball you always see in the TV commercials). The attractions that impressed me the most focused on making the world a better place for all creatures. A portion of the park doubles as an experimental farm in which all manner of plants are grown, an ongoing effort to improve the world’s food supplies. Several of the attractions also carry the message that the most effective changes and most rewarding experiences come about when one uses their own imagination to the fullest to make the world better. That is a philosophy I live by already, but I was glad to see it affirmed so strongly. I plan on continuing to do my best to be responsible for myself and the world around me.
Disney World is a place of dreams, inspiration, and laughter. I found all three in abundance and I am glad I was able to share them with my family. It was beyond what I thought it would be and offered many surprises I had not expected. I had a lot of fun, I learned a lot, and I want to do it again!
As we get older, one of the major decisions that we have to make is when to retire. For some people, their employer makes that decision for them with a “forced retirement.”
The future creeps up on you when you’re busy doing other things. Deadlines and decisions come jumping at you just when you start to relax.
Last week, Cameron had an interview with the director of a postsecondary program we are considering. The interview was done via Skype.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
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