First published December 6, 2011.
It wasn’t my idea.
Three weeks ago, she asked if Madison would be home before the holidays.
“I’d like to get some photos of Madison with the kids,” her step-mom had asked.
“Sure,” I replied, wondering how I could pull that off. Although our reconfigured families are more than amicable—flexible visiting arrangements, shared holidays and even an annual vacation together—Madison is always a wild card when she joins us.
The holidays are the worst.
One Christmas, I had purchased a large TV/DVD/VCR combo, the pre-flat screen 53-pound version. I had hoped to use it to transition Madison from VCR tapes to DVD’s. After she went to bed, the other kids helped me swap out her 13-inch combo for the monstrous replacement. We plugged it in and hooked up the cable. We thought she would love the bigger screen and especially all the new buttons. She had already worn the lettering off the REW button of the old set.
Christmas morning, she raced into the room to grab a video to play, her customary first activity of the day. She stopped cold, confused by the new TV. We showed her how to work it and put in a new DVD—“Barney”, of course—and returned to the tree for more presents.
“Mom,” one of the kids hollered. “Look at Madison!”
As I spun around to peek into her room, I saw Madison lifting up that humongous TV and pulling it off the counter, the cable connection the only thing stopping her.
“Madison, put down,” I instructed. “Look, new TV, new video,” I said and pointed to the VCR opening. This time we put in an old “Barney” tape.
Again, she seemed ok, until she disappeared to the basement and came back with the old TV.
She looked at us and said one of her few meaningful phrases, “I need help please.”
So we swapped back the TVs and eventually made a plan to keep both TVs and phase out the old one. But, that Christmas morning was stressful—almost dangerous. If she had dropped the TV it would have been disastrous.
Another Christmas morning, Madison began her day soiling her pajamas and then finger-painting with it. My oldest daughter, then 14, had to clean up the mess since my wheelchair prevented access to her room and our regular caregiver had the holiday off.
That was it for me. After that episode, I decided that our family needed floating holidays. We would celebrate when we wanted to celebrate and not let the calendar run—or ruin—our life.
Our best gatherings with Madison are generally food-based and short. If there are too many people or too much commotion, Madison loses it, tantrumming in anger or crying quietly with tears streaming down her face as she sings her sad song of mournful crescendos. Both break my heart because I still don’t know what causes them or how to stop them.
But we try.
Floating holidays help. We pick a time and location that works best for everyone, plan for the happy-mad-sad-Madison possibilities, and execute.
So Thanksgiving this year became a photo-shoot Saturday, with plenty of food, caregivers, photographers, and wardrobe changes for both families.
Madison was extraordinary. She let her sister dress her twice and actually looked at the camera a few times as we prompted her, “Madison, show me your shiny teeth,” and “Madison, say, ‘cheese.’”
But the best shot was her response to my prompt, “Look at Mommy,” as I waved my hands high in the air to get her attention.
True to form, she waved back—the darling.
And we all laughed, even Madison. She was so engaged, a rare treat for all of us.
And I was relieved, but mostly grateful and deeply happy that I, too, had responded to a worthy prompt.
Even though it wasn’t my idea.
While flipping radio stations in the car today, I happened across “Firework” by Katy Perry. Within seconds I started tearing up. It has been WEEKS since I saw Perry’s performance with Jodi DiPiazza on Comedy Central’s “Night of Too Many Stars.” And yet the emotional response I had that evening is still very close to the surface. Not being one for touchy-feely sentiments about autism, the tears I had running down my face that evening were immediately chalked up to some hormonal imbalance. But as I heard Perry’s song today, and relived that performance with DiPiazza, I came to understand my emotional response. I was overwhelmed by the idea that this young girl, who was not expected to speak and whose parents were cautioned to not expect much for their daughter’s future, was actually on stage with one of modern day’s hottest pop stars. This young girl was holding her own in front of a huge live audience, and performed like a pro, never missing a beat when the audience burst out into applause mid-performance, nor showing a flicker of distraction by her role in this monumental event. DiPiazza was realizing a potential that had been begrudgingly dismissed upon her diagnosis. Today, her parents have removed all limitations on what they envisioned for their daughter’s future, and with good cause.
Okay, so that’s all great for the DiPiazza family, but why am I moved to tears by the achievements of a stranger? This moment of achievement—I’ll call it a Jodi Moment—is what we all want for our children. To watch as our children accomplish a dream they’ve held dear is the dream of all parents. I’ve been fortunate enough to have experienced “mini” Jodi Moments as Cameron has mastered public transportation, found and maintained paid employment, and countless other moments that have left me both proud and pleasantly surprised. But seeing Jodi DiPiazza on stage with Katy Perry gave me a glimpse of what it might feel like when Cameron becomes a restaurant owner. Reaching a Jodi Moment, and realizing there’s a Jodi Moment out there for everyone is what keeps me going as a mom.
Now I’m sure there are cynics out there that will question what benefit DiPiazza gained by her performance. Her success in life is no more guaranteed by this event than it was the day prior to her performance. I suppose this is a fair point. But even the most cynical critics, the ones that make judgmental comments on You Tube about the mother’s reaction to receiving her daughter’s diagnosis, must concede that this was a defining moment for DiPiazza. I’ll bet there’s nothing she feels she can’t accomplish. I believe that experiencing defining moments of others makes us that more determined to seek our own defining moments. Our own Jodi Moments may not be witnessed by millions, but that doesn’t make them any less significant. If you were like me and were left reaching for the tissue box during Jodi’s Moment, here’s hoping that you’ll soon be reaching for a tissue again due to your own Jodi Moment.
It was a feeling of euphoria when Cody finally came off the waiting list for services. I felt relieved in such a profound way. But reality soon made itself known.
It’s easy to fall into a trap of thinking that everything is just going to be so much better now that you have the services you have waited for, for so long. While it is a step in the right direction, there are many things which surround this event which may set you up for disappointment and disillusionment if you do not look upon it with an objective eye.
Whether your family member receives day hab services like Cody or services from a behavioral facility, you and your family must consider exactly what you will be getting. Who will be coming to work in your home, or who will be working with you at your chosen facility?
In the world of behavioral and social services, many times the people employed are often young men and women enrolled in psychology or social services programs in colleges and universities. They come to such service providers to seek internships, practicums and employment to gain hands-on knowledge and experience in their fields of study. And often they step into a world where—although they are dealing with individuals they wish to help—cognitive and/or behavioral issues are more complicated than they expected. Many times they find themselves facing the challenges of such conditions which they have only read about in research papers and textbooks, and quickly feel in over their heads.
Such predicaments as this lead to a period of time where they must blindly find their way back to self-confidence and self-assurance. Action plans can be clearly outlined on paper and if said plans were to be implemented with neurotypical people, then all would make perfect sense. But it is not always so cut and dried with individuals who have ASD.
New behavioral health and occupational techs often find themselves taken aback by the very behaviors they are supposed to help manage. The fact is, sometimes it is quite awkward for even the most skilled caregivers to deal with being in a restaurant and having to redirect our loved ones on the spectrum when they are doing things like twirling their silverware because it gives them an escape from the noise of other patrons talking, laughing, young children crying and forks and knives striking and screeching across the surface of a plate. Or when we must accompany an adult individual with ASD to the restroom and prompt them not to drop their trousers to the floor while standing at the urinal. Perhaps they need to distract our guys and gals with autism from the triggers of a crowded store—because if they don’t, a meltdown will surely ensue. But imagine being a twenty-something college student who has never encountered these behaviors before from an adult on the spectrum. A little daunting isn’t it?
As a family, you must also face the fact that for many new technicians, this job is only a stepping stone. They’re looking to gain a foundation for a path that will lead to career advancement. So chances are, they may not be around that long. Anticipate many staff changes to come. In most cases it is just a given it will happen.
Almost every technician has had similar questions of me. “What do you want me to today to keep him engaged? How do you know when he’s getting upset or agitated? What should I do when I’m working with him on life skills and he’s totally disinterested?” You simply have to explain answers to these kinds of questions with a direct, matter-of-fact attitude. If possible, spend time helping that staff get to know you or your loved one so that he can be well equipped to handle any turbulent situation that might arise. Remember that although staff are professionals, you are the expert on your family member!
“Is it time yet?” the filmmaker asked. “Not quite,” I replied. “He should be home in about a half an hour.” The filmmaker and I were waiting for my brother Willie to get home from work, so that we could shoot me having a phone conversation with him. I'd cleared the idea with my parents; now, it was just a matter of waiting for the right time to call home. While we waited, though, the filmmaker made a strange request: Could we shoot a pretend phone call before we shot the real one?
At first, I thought: That will be quite the challenge. Imagining what the other person would say, when they'd say it, and how I would, realistically, respond? Doing all that while acting relaxed, as though the camera wasn't on me? Suddenly, I had a new appreciation for actors. But to my own surprise, I was able to act out the call. In just one take, I role-played a conversation with my mother and brother. Doing so gave me chills, because as I was timing my replies to their imagined speech, I could almost hear their voices in my mind. If I imagined them there, I could conjure their conversation. With Willie especially, it was easy to recollect our typical dialogue; we ask and answer so many of the same questions over and over each week. True, he sometimes surprises me with his replies, but for the most part, I can predict his answers to my questions.
In a sense, my brother and I do follow a script when we speak on the phone; there are only so many concrete topics I can touch on with him before he loses interest in talking to me and hands the phone back to Mom. But is keeping to a “script” such a bad thing? No, especially if it helps him to practice his social skills … and especially if it allows us to have a relationship, a point of connection even though we're far apart. And if there's one thing that being Willie's sister has taught me, it's that words aren't everything. Much as I love words, he's helped me to see that sometimes, words are secondary. Our weekly calls are really about what runs beneath every word, every sentence, every second. And when I talked to Willie “for real,” our conversation followed its usual script … and it made me unusually happy.
After filming had wrapped, I curled up and put on the latest episode of the TV show “Parenthood.” I love “Parenthood” for its depiction of Max Braverman (played by Max Burkholder), a young man with Asperger's, and his older sister Haddie (played by Sara Ramos). Though the fictional characters are different from Willie and me in many ways, their storylines often hit close to home for me. This week was no exception. In this episode, Max is running for student body president, gearing up for a speech on election day. Given that Max has refused to write down his speech, his family members are all concerned about the possibility that he might freeze up and forget what he's planned to say to the student body. Fortunately, Haddie comes to the school to support him.
As they wait together in the wings, Haddie encourages Max by listing his best qualities, including his remarkable tenacity. And she promises him that she'll be waiting in the wings to give him a thumbs up if he gets nervous during his speech. In characteristic Max fashion, he replies that he wouldn't get nervous, but lo and behold, just moments into his speech, he's glancing Haddie's way. She gives him the promised thumbs up … and suddenly, Max starts talking about his good qualities—like his tenacity—and how it's connected to his Asperger's. He tells the crowd of students that having Asperger's makes some things more difficult, but it also makes some things easier—like being tenacious and fighting for what he believes in. (And in this case, what Max believes is that every student should be able to buy food from vending machines.)
Tears filled my eyes as I realized: He's speaking from his heart … and he's following the “script” that Haddie gave him.
Right now I'm watching “Fawlty Towers,” a really funny British comedy about a “bed and breakfast” in the English countryside—and particularly its incompetent owner Basil Fawlty. (John Cleese, who played Fawlty, is a comic actor par excellence.)
In this episode, he got an American couple who ordered Waldorf salads. In fact, the husband wanted them so much he paid the hotel an extra £20 for the chef. Just one problem: The hotel didn't have all the necessary ingredients.
Eventually, Fawlty went over the top in trying to explain the situation politely. He started off by talking about how they have no problem getting all the apples they need to make his salad—of course begging the question of the other ingredients. Then, he went into hilarious detail about a delivery truck accident and just how the driver had broken his arm when he tried to unload the goods. Finally, the customer cut him off: “You don't have it, then?” Cue laughter.
Welcome to my world, buddy.
One of my pet peeves is people who try to “soften” bad news by talking around it. I've never understood it … and I don't just mean I don't see why people do it (although that's true, too).
Rather, for the longest time I literally didn't know what was going on! As an Aspie, I grew up with very little knowledge of subtleties. For example, if I had read "CDC Announces Americans Should Make Plans to Say Goodbye to Loved Ones" in The Onion years ago, I would not have understood it—after all, why would a government agency, even the Centers for Disease Control and Prevention (CDC), be in the business of telling citizens to call their loved ones? Only relatively recently have I been able to discern that this parody article meant that the CDC was basically telling us we were all about to die of some horrible unspecified disease and that's why we need to talk to our families one last time.
I shudder to think how many times as a child, teenager and young man I said things like “So what? What are you talking about? That's irrelevant!” In my mind, all I was doing was trying to resolve something that made no sense, and stating a fact in the process. In most other people's minds, I was being obtuse, possibly on purpose, since their hints were perfectly obvious. (To them, anyway—in fact, I'm not sure they even saw them as specific hints, as opposed to just getting the point across.) They also may have thought I was being horribly disrespectful since people don't like it when you call what they're saying “irrelevant.” (Many people feel it implies that what they're saying is unimportant—and thus that they're unimportant.)
Looking back on many of those past conversations, I feel like a fool. Most people knew something I didn't, and I didn't even know that. (In former Defense Secretary Donald Rumsfeld's terms, that was an “unknown unknown” for me—not only didn't I know it, I didn't even know I didn't know it. Since I didn't know about that kind of knowledge, I couldn't even know to ask about it. You know?)
I know I'm far from the only person who prefers the news straight up. Now that we know many people prefer to be indirect about negative things, if you'll make an effort to be more direct if we need it, we'll make an effort to better understand what you're talking about. Deal?
Since it has been just a shade over one year since I was blessed enough to have the opportunity to share my thoughts through the written word thanks to Autism After 16, I decided to take a moment to look back at my first column. Curiosity, it would appear, may not be fatal only for felines! One sentence in particular knocked the wind out of me, and at times like this, writing is the one thing I know I can do that will be productive on some level. Furthermore, since the sentence that blew me away relates quite directly to the fact that I am adult-and-autistic, this seems like as productive a venue as any to share my experience as it relates to that sentence over the past year.
Okay, I lied. It was two sentences, and here they are: “Had I known some two decades ago what I know now—as a parent, as an educator, as a student, as an autistic person—I can only imagine what a difference it would have made in my own life, and the lives of the people who matter to me the most: my neurotypical husband (God bless him!) and my children. What I can hope for at this point is that it is not too late for them to share in the benefits of what I now know, and what I am learning still.” Some of you who read my column regularly may have noticed that some months back, I asked my editor to add my maiden name to my signature. I have been doing this in several areas (or at least, on Facebook!) recently in preparation for what is happening in the next week or so—the finalization of my divorce and taking back my maiden name legally.
The paradox is undoubtedly evident between my new reality and the statement I made this time last year, listing my neurotypical husband (God bless him!) as the first person who matters to me the most. The reality I have come to accept is that for me, with my Aspie traits that I would not trade at this point in my life for anything, are not exactly compatible with those neurotypical traits that are just as ingrained in my husband … I can still call him that for a few more days, at least. I know of a gentleman on the spectrum whose wife is as well, and as I understand it, they maintain separate households while remaining happily married. A few months back, when it became glaringly obvious that my marriage as it was functioning was in actuality NOT functioning, I suggested such an arrangement to hubby. He was the one who had opened the conversation that our reality was not working for him, and hadn’t been for a long time. He did not warm to the idea (perhaps if he’d been an Aspie too…?). But the sense of overwhelming relief I experienced in spite of myself at the idea of living outside what I had felt for too long was the confines of our marital relationship planted the seed that finally blossomed like a fresh bloom in the spring, and I knew I had to go.
I didn’t want my husband to end up hating me, I certainly didn’t want to end up hating him, and my offers to change the AS parts of my makeup that I knew drove him to the brink were met with refusal. He did not want me to put myself through the struggle any more—to spend any more time, effort and energy attempting to fix things that I didn’t necessarily think were broken in the first place, to stop trying to jam that square peg that was me into the round hole that was a marital partnership. And for my part, I was just about done watching him be miserable and blaming myself for it day in and day out; whether or not that was the reality of the situation, that’s how I perceived it … and perception is, after all, everything. So I left, before we could end up hating each other and while I still had the chance to simply be myself on my own terms and stop trying to fit myself into my perception of what I thought I “should be” for him.
I am extremely proud of who I am today, still a work-in-progress but so much closer to being the person I think I’m actually supposed to be than I was this time last year. Having the courage to know that I could live on my own, and take care of myself, and pay my bills and manage my finances and grocery shop and … well, you get the idea. We adults blessed with AS may just, every once in a while, need all of the well-intentioned neurotypicals in our lives to give us a real chance to find out who we are, what we’re capable of, and what strengths we should never be asked to give up.
Thank you Charlie, for giving me that chance. You will never be more important to me than you were when I wrote my first column this time last year.
I am a very fortunate mom. If you’ve read any of my previous columns, you will fully understand why I say this. While Cameron faces many challenges, he has mastered some skills which will be crucial for his independence. I’d venture to guess that these skills put him ahead of many 17-year-olds, regardless of learning profile.
The text messages I now receive from Cameron are an indication of the skills I am so proud of. The week prior to the high school autumn dance, Cameron realized he had a conflict. He sees a personal trainer at the gym once a week, and Cameron realized the dance fell on training day and he would not have time to see the trainer and make it to the dance on time. Cameron sent me a text asking for permission to cancel his session. Cameron’s memory is much better than his mom’s because he actually remembered to tell the trainer about the schedule change, but made sure I hadn’t already taken care of it for him. (I’ve learned that instructing Cameron to let a person know of a schedule change and then going around him and doing it myself—as a backup—is not appreciated by Cameron.) I think in addition to realizing my memory challenges, Cameron has also figured out that I am a visual learner, as he’s now sending texts when we are running low on critical groceries. And if the visual cue doesn’t work, he’s now taken to going to the store and picking up the necessary item. (For which I reimburse him, of course.)
Cameron’s ability to think through his weekly schedule, and what might impact it, may in fact be due to his need for routine. But the way he handles changes to the schedule is impressive to me. He’s not so focused on what usually happens that he loses sight of what’s going to happen. He has learned to problem-solve. Now, I would venture a guess that he likes the fact that I’m there for him to confirm what his next steps should be, but he is getting the hang of determining those next steps. And while problem-solving skills are certainly ones I’ve always aspired for Cameron to possess, I’m not exactly sure how he learned those. Perhaps it was survival instincts coming from living with a forgetful mom. Whatever he did, I did, or we did to hone those problem-solving skills, I’m glad it happened. I can take these examples of skill attainment, and make an informed decision about what needs to come next in his transition to adulthood.
It’s important to keep Cameron’s strengths in mind as I begin to contemplate life after high school. Certainly postsecondary programs are not one-size-fits-all. Programs that are heavily focused on independent living skills probably aren’t the best fit for Cameron. But a program that provides intensive academic support in a typical college setting isn’t going to be the answer either. Regardless of how much support is offered, I don’t think Cameron will be able to access curriculum content of a mainstream college course. Given what seemingly won’t be a good fit, what are the remaining options? I have a feeling that the solution to this conundrum will be just like Cameron: entirely unique.
First published on February 13, 2012.
I attended (my first) Parent Social event this weekend. These events are scheduled simultaneously with high school dances, so that parents can hang out together for a few hours, while our kids dance themselves into a sweaty frenzy. This Parent Social had a special twist: Parents of recent graduates were going to be discussing the postsecondary experience. Hmmm ... this sounded interesting. “The Tale of Two Seniors”—It was the best of times, it was the worst of times.
The Best of Times: Our first senior of the evening attends a mainstream university in Southern Florida. There was uncertainty as to whether or not this young student would have college in the future up until middle school. During the search for postsecondary education, various options presented themselves. There was a college specifically designed for the LD/ADHD student to which the senior in question was not accepted. The student and family chose a small school offering a support program for students with learning challenges. Tutoring by degreed professionals (not peers, not grad students) is offered one-to-one and in group settings. There is a professional (not peer, not grad student) academic coach and independent living coach. There's even an optional laundry service. The family is happy with their decision and expects the student to graduate with a degree, albeit it will be a five-year plan, at best.
The Worst of Times: Our second senior planned to attend a university specializing in culinary arts. The university expressed some concerns about accommodations, but with a little back and forth, there was agreement between school and family. The student's mother was concerned about the heavy workload resulting from the schedule being divided between culinary work and academics. The practical decision was made to try on the academics in a community college setting the first year. Everything seemed to be going according to plan, in spite of some disappointing placement testing mandated by the community college. Then, halfway through the first semester, the mom was told by the student, "We need to talk." Uh oh. The student had stopped going to classes barely four weeks into the semester. All the "I'm meeting classmates to study before class" was a charade. The family is now looking into employment training services from their local vocational rehabilitation services.
Why the vast difference in these two seniors? You would think two students from the same small school would be able to achieve similar results. I didn't have a soapbox handy that evening, or I might've shared my thoughts with the packed house. First of all, this tiny little cross section of last year's graduating class just goes to prove how unique every student's needs are. Secondly, a college-like experience doesn't have to be the next stop. The eagerness of that evening's crowd was almost palpable. Everyone seemed desperate to find a straightforward solution for their children's college years. Were I on my soapbox, I would've shouted, "What happens AFTER this college experience? Is this experience worth ANY amount of money? Would that $200,000 (or more) better serve your child across his or her lifespan?"
I get the emotional attachments of the natural progression of going away to college. But studies are indicating that even for the general population, the costs of a college education are overshadowing earning options after college. If the average college-ready student is being cautioned to think long hard about the cost of education, where does that leave the ASD population of college hopefuls? The questions that need to be considered are: What are the likely outcomes of this college education? Will I be better off and more employable? And last but by no means least, is this investment worth it?
Today is a gray day in Alabama, a day with the kind of dispiriting sky that makes me want to curl up and watch reality TV all day. But I know that doing so would not make me happy. On the contrary, I need to do something of value, and so I write. I tell the truth as best as I am able. True, there are days in which I don't want to create, to contribute. Likewise, though I care deeply about autism, there are days when I feel the burdensome weight of all that we don't know about it.
My brother Willie may not realize it, but thinking of him actually helps me through days like these. Why? Because these challenges are nothing compared to what Willie struggles with every day. My brother is an incredibly smart, hilarious young man who deals with self-injury and aggression. Moreover, he faces isolation and misunderstanding, as he usually can't communicate the reasons behind his behaviors. If I think that autism is “all too much” at times, what must he feel?
When the questions get too big and the answers seem too small, I call to mind a family vacation in Hilton Head last month. On the trip, there was a gathering in which I noticed my brother sitting to the side. This is typical for Willie. He'll sit with us for supper, but afterward, he'll dash off to be alone. The family understands; no one pressures Willie to stay when he needs to retreat. However, it's difficult to tell the difference between Willie needing time to unwind and Willie going off by himself because he doesn't have the words to ask someone else to be with him. And when I saw Willie by himself during this particular gathering, I had a hunch that he didn't want to be alone. I came over and sat beside Willie on the sofa. “What are you reading?” I asked.
“The illustrated French dictionary!” he exclaimed with enthusiasm.
“Oh, nice!” I said, meaning it. French is beautiful to me; I studied the language in school for nearly seven years for love of its lyricism. This being the case, I felt comfortable reading along. My brother turned the pages, stopping when he came to a listing of numbers, zero through 100. I felt a momentary flare of dread; he was going to read out every single number, wasn't he? This would take forever. The prospect of listening to Willie read those digits seemed dreadful. (In fact, it was the same sensation I felt this morning as I looked at the colorless sky.) It was a weighty, burdensome feeling, the belief that this page of numbers held no potential.
That day in Hilton Head, Willie did begin reciting numbers. But to my surprise, the recitation wasn't tedious … it was beautiful. Willie's voice was calm and soothing, and his accent was pitch-perfect. Listening to him pronounce each number with care and precision, I felt an unexpected peace arising within. Willie was doing his best to read to me in French, and I was doing my best to listen. And at the bottom of the page, a few larger numbers appeared. One thousand. Ten thousand. One hundred thousand. One million. As Willie recited these, a smile spread across his face. His expression seemed to say, “What outrageous figures!” Sensing his mood, I grinned too—imagine one million!
Just as one million seems indescribably large to Willie, autism can seem unfathomably daunting to me. Yet I can choose how I approach the subject. Will I dread that which I don't fully understand, or will I see the wonder—even the humor—in it? And so today, I ask myself: Will I approach autism with an attitude of defeat, or will I be open to the unexpected? Will I let myself get lost in abstract, fearful imaginings, or will I simply be present to my brother when he wants to share something with me? It's a constant choosing, and it isn't easy. But thanks to Willie, I know that, if I choose to listen, I just might be surprised by the beauty I hear.
Throughout the year, I like to participate in a variety of sports and athletic activities sponsored by various organizations including challenger league baseball and Special Olympics basketball, indoor hockey, bowling, and soccer. I enjoy doing all of these sports because they all require different kinds of physical activity and I get to participate in them with some very nice people. I have been thinking a lot about the sports I love, and I have recently taken the time to give back to the organization that has given me the opportunity to participate in activities that, given my physical issues, I would otherwise not be able to enjoy.
I play all of my sports with other special needs athletes ranging from rambunctious personalities to quieter, more subdued people who nonetheless become just as rowdy as everyone else when they play. Whenever I play, I feel very excited in a way I do not usually feel, probably the result of being in constant motion and being around people I enjoy spending time with.
Sometimes my enthusiasm for playing sports can affect my performance. If I allow my excitement to get the better of me, I am likely to make a mistake such as missing a goal in soccer or not properly aiming my shot in basketball. I can handle these mistakes most of the time because I usually just have to reset myself and refocus on the basic form that I should be using so I have a more positive result. Sometimes, however, a slip-up can become costly. I remember one day when I was playing soccer, I was running too fast down the field and I tripped in one of the ruts in the ground, twisting my ankle in the process. It took me a few weeks to fully heal that ankle and even now it still feels painful to me if I move it the wrong way. Whenever I play soccer these days, and occasionally during other sports when I am running very fast, I make a point to slow down and pay attention to my surroundings so I do not hurt myself. Being careful is something I try to keep in mind during all of my sports, but I also have a lot of fun.
I also enjoy doing new things in sports or taking a different approach to certain aspects of a sport to see if I can improve. For example, I started using a heavier bat during baseball games this year. I was pleasantly surprised to see that I could handle the heavier bat and was successful when using it. Also, during the past soccer season, some of the skill practice drills changed slightly. Various small changes such as the way the soccer balls were distributed in one drill and the size of the makeshift goals in another caused me to rethink my approach to these tasks. The changes made soccer much more exciting for me, and I hope the new drills will be worked into next year’s practices.
Sports are a big part of my life, and I want to make sure that the opportunity to play them in an organized capacity and for people like me stays in my area. To this end, I decided to help out with a Special Olympics fundraiser at a local restaurant. I was part of a group of people that included others from different Special Olympics groups in the area as well as a good friend of mine. We were assisted by the restaurant’s employees and the local police department. As we asked for donations, we passed out flyers for upcoming Special Olympics events and coupons for goodies found in the restaurant. Fortunately for us, there was a steady stream of customers flowing in and out of the restaurant that donated. The fundraiser was very fun and it was great to see so many other people who care as much as I do about Special Olympics.
Playing sports has become very important to me not only for the physical exercise it gives me but also for the friendships that I have made. They have also added some much-needed variety to my life and have taught me that I can do things that I did not think I could. I know that I will participate in Special Olympics all of my life.
We were concluding our annual IEP meeting last spring when the director of special education offered us a voter registration form for our 19-year-old autistic son Mickey.
“Are you kidding?” my husband Marc said. “He doesn’t know Dick Nixon from Dick Tracy.”
Legally Mickey is entitled to vote, but without being able to weigh and consider the issues and candidates, what would his vote mean? Mickey can vote. But should he? We have the legal authority to make medical and life decisions for him; that certainly doesn’t give us the right to tell him who to vote for. But if he votes, wouldn’t he just be voting for whoever we told him to vote for?
How do you know when—or even if—it’s time to encourage your cognitively disabled adult child to vote?
There was a lawsuit in Minnesota that set off alarms this year—as well it should—about whether disabled people who cannot handle their own affairs and are under the care of a legal guardian should retain the right to vote. It grew out of a 2010 incident in which a Minnesota voter claimed he saw mentally disabled adults being coerced by their caregivers to vote for certain candidates. I understand that someone with a disability can be taken advantage of—it is one of the worries that keeps me awake nights. But do you penalize all disabled people, just because they could be victimized? How can you take away a person’s right to vote on the grounds of mental illness or intellectual disability? That violates a person’s civil rights under the Americans with Disabilities Act.
When our nation was founded, only white men could vote; after the Civil War, Jim Crow laws, literacy tests and poll taxes barred many African-Americans from voting. The right to vote was hard won for women too. But today voting is a fundamental right protected by federal law. As long as you’re a citizen and over 18, you can vote. It isn’t based on educational level. No one administers a test. We don’t ask voters if they understand the issues, or assess their knowledge of the Constitution. Can you imagine if an IQ test (controversial in itself) for nondisabled citizens were required? What would that cut off be, and who would make that decision?
“Mickey, do you know there’s an election this year?” I ask him. He doesn’t. I ask who our President is.
I explain about how next month we will be voting for who will be president for the next four years, and ask, “Would you want to vote?”
“Can I vote for George Washington?” he asks.
I turn this over and over in my mind. For the rest of his life Mickey will be relying on federal and state programs such as Medicaid and Supplemental Security Income. Mickey can literally read a ballot. He’s over 18. He’s a citizen. He’s entitled to vote. Shouldn’t he be voting on candidates and issues that will affect his own life?
But there’s a chasm between having the right to vote and the actual ability to understand the issues and voting process. Our son doesn’t understand those issues yet. We hope someday he will. I don’t think he should be voting until he realizes that Election Day means more than a day off from school.
First published on October 3, 2011.If you’ve read any of my previous columns, you’ve probably earned the right to be on a first name basis with my son. My son’s name is Cameron. And WE are transitioning. As a part of transition, Cameron’s school places its eleventh graders in workplace internships to learn and develop valuable job skills. Cameron’s dream, Cameron’s whole purpose for being according to him, is to own a pizza restaurant. He’s developed his own secret recipe, which he’ll gladly share with you, if you ask him. He also came up with a name for the restaurant, but it’s not entirely appetizing so I hope he’ll change his mind on that one. The ideal internship for Cameron would therefore be at a pizza restaurant. Where to begin? Anyone who has known Cameron for more than eight hours will soon realize that he is very motivated by food. (Not too unlike my labradoodles, but I’ll stick to the topic at hand.) If you want to start a conversation with Cameron, food is a good starting point. You will quickly learn of Cameron’s pizzeria dream and his secret recipe. My next door neighbor has known Cameron for more than eight hours, and happened to have a real estate client who leased a space to that would become a pizzeria. My neighbor (without prompting or begging from me) spoke to his client about Cameron, and passed on contact information to me. I then contacted the client who was happy to give Cameron an internship. There was a catch: the restaurant—though only a mile from home—was 15 miles from school, and the internship is to take place during the school day. Luckily, as a byproduct of summer camp, Cameron mastered public transportation, and was more than willing to spend an hour on a bus and Metro train in order to work in a pizza restaurant. The teacher responsible for organizing internships was thrilled to have Cameron in a placement that thrilled Cameron, and was more than willing to do travel training with him. All the pieces fit together, and I have never seen such enthusiasm from Cameron. On school holidays, when interns traditionally take the day off, Cameron seeks additional hours at the restaurant. The moral of this story is that this placement at Angelico Pizzeria did not just happen. People who know Cameron wanted to help. Even people who didn’t know Cameron wanted to help. It took a whole cast of characters including a neighbor, a business owner, a teacher, and a willing student to make this scenario work. I didn’t start with a Google search for “pizza internship for ASD student.” I didn’t wait for his school to develop a relationship with a pizza restaurant close to school, and have him work in the assisted living cafeteria in the meantime. Sometimes you just have to push up your sleeves and see what you can make happen. If I’ve learned anything on our transition path so far, it’s that you will need help from various villagers from time to time. The transition path isn’t clear cut, and many hands make light work. Fortunately, most of the villagers along the way are friendly and helpful in countless ways. It’s also fortunate that Cameron does not aspire to be a rock star. Finding an appropriate internship in that case might have required more than a village.
In a recent column I mentioned how Cody, like other individuals with autism, has a difficult time expressing when he is sick or in pain. But this morning that expression was very clear.
I had woken him up at 8:00 a.m. to start his morning routine of having coffee, eating breakfast, brushing his teeth and getting dressed before Stephen arrived. Everything was going as normal when Cody soon decided his breakfast was not settling right. He just couldn’t keep it down.
Cody used to have a habit of eating too fast and then soon after he would become sick. But he hasn’t done that for quite some time. He had also been rather lethargic the night before. So when he became ill his morning I was a little concerned.
Anytime I feel like a physical ailment may be present, I start out by asking him a direct question.
“Cody, do you feel sick?” That is usually followed by a series of questions. Do you have a headache? Does your ear hurt? Does your neck hurt? And I make my way through the anatomy until we ascertain what, if anything, is wrong.
I expected to do the same thing this morning. But when I asked if he was sick Cody’s immediate reply was, “Just don’t feel too good.” While I hate it when my child is sick, I was elated that he was able to express it to me with so much more ease than he has done in the past. I had to just sit and wrap my mind around what had just taken place.
Later I asked him if he would like to ride with me to the grocery store. A normal response from Cody any other time would be for him just to make a beeline for the passenger side of the car, sick or not. His response today was, "I think I'll just stay home." Again I was in awe. It was an answer I would expect to hear from most anyone else when they are ill. But this was so atypical of my son.
Evening came and when dinner and dishes were done we all settled in downstairs for some family time as usual. But Bill had had a rather hectic day at work and was tired and cranky. He headed to our bedroom to get ready for the next day and take a shower. Cody watched in silence. I could tell by his facial expression he was aware Bill was not himself tonight. Normally Cody would make no comment. But tonight was different. He said, “I just don’t know what’s the matter with Bill.” To hear him make a statement totally in context with the situation and in such a succinct way was music to my ears.
Some medical professionals have suggested that when people on the autism spectrum become ill, normal patterns of dialogue will sometimes emerge. And that has been true with Cody in the past, but it commonly happens when he has a fever and it has never been to this degree. However, he had no fever and it wasn’t just that his pattern of speech was typical, so were his actions. So what do I make of this?
First, my hopes soared as I thought of the possibilities that finally Cody was showing progress in self-expression and communication.
Then, it gave me pause to consider that perhaps this illness wasn’t just a mild stomach bug as I had originally supposed. Maybe there was more than met the eye. Maybe those learned people in the medical community were more on the mark than I first believed. Thus, I watched him closely throughout the day. He has complained of no other symptoms and none have presented themselves.
Analyzing the facts I have is all I can do. He said he didn’t feel well. He said he had a headache. He said his stomach was upset. His temperature has remained normal all day and in spite of being a bit under the weather his spirits have been bright. And this time, he was able to communicate a need; his actions backed it up. I can’t help but to trust that God has been listening to my prayers.
The night before last, I had a dream that I was driving an unfamiliar silver car, and that Willie was my passenger. We were driving toward my parents' home, and we were both relaxed and happy. And then, suddenly, the car careened out of control. It lifted off the road, flying over trees and intersections. Nothing I did with the steering wheel or breaks seemed to make a difference in its trajectory. The car was driving itself, moving with purpose toward an unknown destination.
When the car finally stopped, Willie and I found ourselves in a parking lot. The lot was in an area I knew; it wasn't that far from our destination. However, the lot itself was strangely structured. It was at the bottom of a small canyon, with no apparent exit. Worse, there was no one to help … no one, that is, save for a mechanic with grease-stained overalls, a garbled accent and a toothy grin. Yet despite his appearance, I had a sense that he was a sage. I approached him and asked for directions toward the exit. His manner was welcoming, but his reply was cryptic. He said something like, “The exit for this lot can only be found by those who already know where it is.” With a wink, he walked a few yards and then vanished.
So there I was, standing in a desolate parking lot with a possessed vehicle and a younger brother with autism depending on me. And the mechanic had quoted from the “Pirates of the Caribbean” films and then disappeared. The situation did not look good. It was such a frustrating scenario, because I could see familiar buildings and landmarks in the distance. I knew that we weren't far from home, but I had no idea how to get out of the lot. Moreover, I was terrified that Willie would melt down at this unexpected change.
We were in the lot for a very long time. Fortunately, buildings lined the lot, and we were able to do things like sip water from a fountain and eat snacks. There was even a TV that Willie could watch. Even with these amenities, however, I could tell that Willie was having a hard time, and so was I. Yet miraculously, we never seemed to struggle at the same moment. When Willie was starting to freak out, I would be calm, and vice versa. Hours passed. I despaired of ever reaching home, but I tried to be strong for Willie's sake.
But then, at twilight, I decided to go outside and take another look at the lot. It was then that I spotted a small, well-concealed exit … one that hadn't been there before. I remembered the mechanic's words, and at last I understood them. This exit had come into being because of our time together in the lot. It existed because of how Willie and I had been patient and held one another up. It wasn't something someone else could have given us; instead, it was something that we had to “create,” albeit unconsciously. So Willie and I got back into the car, and soon, we were on a road leading us homeward. The relief and exhilaration were tremendous.
This was a leaving normal dream. When Willie started having behavioral problems, it was as though our family was in a car that had lost control. And the “parking lot” is where we are now. It's close to home, but even so, we're not sure how to “get back” to a place of safety and peace. Fortunately, we have provisions in the lot, and we can be sustained until we find the exit. And I believe my dream offered valuable guidance, as it “told” me that the only way out of this difficult time is to go through it. It told me that the only way my family can arrive at a place of peace is to travel the roads we already know, roads of patience, kindness, and love. We're in the parking lot now, but we're doing our best to keep it together for one another. And, in doing so, we're already on our way home.
Moms and dads out there, how do you know when your m(p)aternity leave is over and you're back at your job?
Your boss gives you crap that you need to spend some time, energy and annoyance dealing with. If the crap wipes off, you're still at home with your baby. If the crap is metaphorical, you're back at the office.
Your boss insists on frequent changes. If you carry him literally to do them, you're still at home. If you only carry him metaphorically, and it's the boss who gets to explain what kind of change is needed, you're on the job.
Your boss gives you sleepless nights. If she is just as sleepless as you are, quite likely it's a baby. Otherwise, it's your (theoretically) adult boss at the office.
If you're trying to get your boss to sleep more, it's a baby. If you want him to wake up and smell the coffee, it's your supervisor.
You need to chauffeur your boss around. If you can do it while walking—and you can strap her in over her objections—that's your baby. If you can only do it by driving, that's your work superior.
If you have to be there when your boss has lunch (and breakfast, brunch, mid-afternoon meal, supper, late-night repast, etc. ...), it's a baby. If you want to have lunch with the boss but sometimes can't, he's full-grown.
Your boss demands results yesterday. If the “feedback” is totally inarticulate and delivered at the top of her lungs ... ummm, never mind!
Just goes to show that some experiences are universal to Aspies and NTs alike. I know multiple Aspies who have raised children. Now it's my turn.
Now I guess I have an excuse for certain things ... like my occasional OCD/paranoia about what could possibly go wrong in any given situation. (That's correlated with, but is by no means confined to, autism spectrum conditions.)
It seems such worry has a name—concerned parenthood! You may have heard that “The poor are crazy, the rich just eccentric.” Well, some childless people might be OCD or paranoid, but parents are just watching out for their kids!
“Why do all those cars drive so fast?”
“They're only going 30 mph, and that's the speed limit! What's your problem?”
“Well, what if my little one dropped her ball and ran out into the street to get it—could a car stop in time?”
“You're right—we need more stop signs (maybe one every block?), more speed bumps (ditto) and we could cut the speed limit down to 15 mph. After all, we always need to keep kids safe!”
Or at home:
“Honey, this milk is a couple of degrees too cold!”
“Look, just drink it. Milk is supposed to be cold! What difference does a few degrees make? I swear, you are so finicky sometimes.”
But after the baby is born:
“Honey, this milk is a couple of degrees too cold!”
“Oh dear! Junior can't drink that! Let's heat it up for a minute or two right away.”
One thing I've learned so far as a new parent is that when you have a baby, you're reliving one of nature's oldest stories. In many ways the experience is much the same no matter who you are.
First published on October 25, 2011.
In my career, I am fortunate enough to have the opportunity to teach in a variety of settings, both in the classroom and in the community. Most of our students involved in community-based cooperative learning appreciate the chance to have work as a part of their school day. They also tend to demonstrate varying degrees of understanding as to the long-term value of these real-life work experiences. But this level of understanding varies from student to student and does not necessarily have anything to do with the nature or severity of their disability. Some of those who are most resistant to the idea of learning the lessons we are trying to teach are the ones who—on paper, perhaps—have the greatest number of options in their post-secondary lives. Consideration of this paradox reminds me of one lesson in particular.
Last year, in one of my Career Education classes, a student put forth the question, “Why do we have to learn these things? Why does it matter?” We were having a discussion about the application of employability skills, such as following directions in the workplace even when those directions don’t make much sense. It was proving quite challenging for this particular group to wrap their collective brains around the, “Why?” And I got it. I got it on a level that they didn’t even realize. That question, and variations of it, haunted me in my PD (Pre-Diagnosis) days. So the lesson for the teacher becomes finding a way to answer the question in my own brain in a way that will enable me to provide the clarification my students are looking for. Those of us who think logically as a rule of thumb may find ourselves aggravated when a direction is given that must be followed no matter what and that direction does not make any sense. I think, maybe, the difference is that many, many Apsies need things to make sense. It is a basic need in the same way we need to be comfortable in the clothes we wear and the food we eat and the beds we sleep in. And we don’t like the answer, “Because that’s the rule.” Or, “Because that’s the way it is,” or even, “Because that’s how we do things here at ...” These answers don’t make sense much of the time, and we NEED things to make sense.
So what did I tell my student? Well, I began by telling him that he had posed a valid question. Nothing like stalling for time, right? Because I really had to think about my answer. Then I told him what I have learned to this point, which is that if “we” want to be able to get along in this world, there are going to be times where we do have to follow the rules, whether they make sense to us or not, just because.
I was no more satisfied with that answer than he was, and I have spent considerable time since that conversation working on formulating a better answer, an answer that makes sense to those of us who need things to make sense on an almost visceral level. To some of the others in the class, my hasty answer was sufficient. I know there must be a better answer, but the more I learn as I juggle my many hats—teacher, student, mother, Aspie—I find myself wondering … why? Why do we have to be the ones who always seem to have to adjust to the rules that don’t make sense? Is it possible that the answer is that we need to find a way to set about changing the rules? We see more and more each day how the principles of Universal Design are implemented with an eye towards total societal inclusion for individuals with disabilities. Changes that are made on levels big and small end up not only serving the needs of those who fought for them in the first place, but society as a whole. Everyone wins. So could the same not hold true for changes that would not come with a monetary cost? We as a society are asking today’s generation of young people with autism spectrum disorders to find their place in this world under the assumption that they are the ones who have to do all of the work to fit in. How easy would it be for “us” to consider the question posed by one student, “Why?” and consider the possibility that it might just be okay to let go of some rules that don’t actually make a whole lot of sense in the first place. If making and sustaining eye contact is uncomfortable or even painful for an individual in the workplace, should it be held against them? If certain articles of clothing pose similar challenges and a uniformity of dress code is expected, is there not perhaps a way for an acceptable substitution to be made that would be mutually agreeable? Does a hard-working, responsible, capable adult with Asperger’s who performs all job duties to specifications have to be able to engage in “chit-chat” to be considered a valued employee? I suspect that if we give careful consideration to questions such as these then the process of transition to adulthood, and survival once we get there, could be made a whole lot easier for a significant number of our children … and maybe for everyone else as well.
There is a saying that “necessity is the mother of invention.” Likewise, as any parent of a child with special needs knows, ingenuity is the necessity of all mothers!
Over the years, I have had to create opportunities for Cameron that weren’t necessarily straight forward. Sometimes it takes a little luck and a lot of creativity to come up with a working solution for whatever the issue of the day may be. Realizing I’m not the only parent required to flex my creative thinking muscles, “Transition from the Trenches” will be featuring a series of parent stories illustrating creative solutions for their adult children with ASD.
The first featured parent is Deborah Barrett, mom to Anthony Barrett whose micro-enterprise, Anthony at Your Service, was introduced my article “From Interest to Innovation: The Micro-Enterprise Model of Employment.” Deborah’s life work has been shaped by her parenting a child with autism. Thinking outside the box is her default mode of thinking. What follows is Deborah’s description of the evolution of Anthony at Your Service. Worth noting is that she always has an eye towards repeating Anthony’s successes in the autism community at large:
As a mom, I guess I see that Anthony at Your Service brings a different perspective to thinking about employment for adults with autism or other developmental disabilities.
The idea for a courier service came about after I'd spent a couple hours on a sunny summer day with Anthony in a dish pit at a local restaurant. Anthony loves dishwashers, so this opportunity was great for him as a work experience placement, and he volunteered there during the summers. But when we came out of the dish pit into the sunny day, I realized that I didn't want Anthony to spend his life hidden away, missing the daylight, and not really being seen as a participating member of the community. I began tossing ideas around with Anthony's worker, Christian Hansen (of the band Christian Hansen and the Autistics). We started to identify the other things Anthony loved, like being outdoors, riding in cars and listening to music, seeing new places and new faces, and moving on. More and more, we thought a courier job would be ideal.
The glitch was how to find a courier company that could accommodate Anthony's needs and the rate at which he could work. We struggled to think of how we could find the right employer for Anthony, who has significant autism. The idea incubated over a couple of years, during which Christian (sadly for us) moved to Toronto.
Enter Mike (Hamm). When I spoke to Mike, he started to think in terms of "deliveries" rather than courier services. "Deliveries" sounds more individual, more unique, more of something special. When we thought of it that way, we could see how this could be a service Anthony himself provided, with Mike's assistance. The name Anthony at Your Service just came to me, and Mike liked it. Then Mike realized that Anthony himself would be the way to present the opportunity to potential customers.
What I think is so important about this, is that Anthony at Your Service plays to Anthony's strengths and the things he likes to do. More than that, though, it's Anthony's business. It leaves control with Anthony, his family and Mike. Because it's our idea and our business, we can control things to make it serve Anthony as much as to make it serve the community. So often parents and family members get bogged down in trying to find an employer and trying to massage a possible job for their teen or adult with autism. In this case, and with Mike's talent for presenting Anthony so positively to the community, we were able to customize something that is geared toward giving Anthony a job that involves stuff he loves, but also challenges him to grow. At the same time, the public is aware of Anthony—not as a "weird autistic guy" or a "charity case"—but as a loveable man with autism who is a participating, contributing member of our community.
In a way, that makes Anthony safer. People who wouldn't otherwise know Anthony now do. They understand that he is both autistic AND a member of the community. People care about Anthony. I think people would be very sad if somehow Anthony could not continue doing what he is doing. Opportunities for abuse are substantially decreased when adults with developmental disabilities have more public roles. More than that, it makes community members who may not otherwise know an adult with autism more appreciative of the challenges they have as well as the gifts they offer. Anthony at Your Service presents Anthony as able to give something back. People really want to work with that and support it. It's a much different attitude than "taking pity" on an adult with autism. The more positive energy we build in the community, the more diverse and rich it becomes.
I cannot tell you the number of positive responses we have had to Anthony at Your Service. I realize now that there are so many people willing to embrace this young adult with significant disability, because they want to support his struggle to be a full, visible member of our community. I think we just had to present it in a context they could support.
What does this mean for others? Perhaps it gives some families the opportunity to think outside the box. Perhaps they will create opportunities that do not exist in the services that are currently available. Perhaps we see that we can focus on strengths and that the gifts our loved ones bring to family members can be extended to community members. Maybe, when we focus on the strengths rather than deficits and we support the strengths, we can begin to transform the role of persons with developmental disabilities in our communities. At the same time, we broaden the capacity of the community to understand, engage with, and appreciate the gifts persons with autism inherently bring to community life.
Deborah has graciously provided an update of the progress of Anthony at Your Service as the real numbers have emerged:
Anthony is making a very small profit, or a little better profit, depending upon how you look at things. Mike has devised a way to keep better track on Anthony's hours and Mike's mileage, which is our biggest expense at 50 cents/kilometer. So we should have better figures next month. Anthony is not quite making minimum wage, but we think with re-jigging our price point and keeping our service within a certain distance, Anthony should be able to make minimum wage for the time he works, and expenses will get paid as well. It can provide a model for those who qualify for funding as adults in Alberta, but wouldn't work well for those who do not qualify for funding, I'm afraid, unless they were capable of driving their own vehicles.
It's amazing how much hope families are taking from this venture, though. And a few businesses have approached us with some excellent opportunities, which we hope to take advantage of once we've established what works in terms of price point and geographic area served. One mom is even willing to drive her son, just so he can have the experience of participating in community life through this type of work.
Deborah understands, like many parents of young adults with autism, that opportunities are often created. I have often felt as though I was reinventing the wheel with every new challenge I face as Cameron’s mom. I’m sure I’m not alone in feeling that somewhere someone has traveled down a similar path, and learning from that prior experience would make my path that much easier. If you have a successful and innovative journey you’d like to share with “Transition from the Trenches,” please email me. Each month, a new creative transition solution will be featured, and hopefully we’ll all be a little better at thinking outside the box as a result.
The title of the Washington Post article grabbed my attention immediately: “Autism Can Have Large Effects, Good and Bad, on a Disabled Child's Siblings” written by Ranit Mishori, a family physician and Georgetown University School of Medicine faculty member. I was intrigued, yet after my disheartening recent experience of reading “The Normal One,” I was hesitant to dive into another piece about siblings and special needs. However, reading Mishori’s essay was a reassuring experience for me. Her younger brother, Dror, has autism, and her article displays candor, courage, and a reasonably balanced perspective on both the positive and negative effects of being a “special sibling.” For her emphasis on the fact that siblings and families are resilient, I want to say: Thank you.
As the article notes, having a sibling on the autism spectrum does pose difficulties. For example, I could relate easily to an incident Mishori described in which her younger brother bit her on the face. My first memory of interacting with Willie when we were kids is of him biting my hand during a battle over TV shows. We were fighting because each of us wanted to watch a different show, and right in the midst of our battle he bit my hand. More appalled at his behavior than physically hurt, I howled for our mother. Even at 4 years old, I remember noticing how my 2-year-old brother looked: guilty at having “crossed the line” but also a bit pleased with himself for his ingenuity. Yet while one could chalk that particular incident up to typical sibling rivalry, the story of how my brother bit my leg during one of his meltdowns cannot be categorized in the same way. That time, we were both young adults … and the bite really hurt. My physical and emotional wounds from that incident took a long time to heal.
And when Mishori details some of what siblings of children with autism are “up against,” I can call to mind memories and examples to match every item on the list. When Willie and I were younger, his having autism didn't seem like such a big deal to me—at worst, I'd be annoyed when Mom, Dad, and I would have to hunt for Willie after one of his runaway episodes. But when Willie started having meltdowns in his teens, the challenges of being his sister increased dramatically. To paraphrase Mishori’s list: I have “missed out” on typical family outings, felt afraid to invite friends over to our home, known the pain of unpredictable, aggressive episodes and felt the need to minimize any problems of my own and “step up” as the responsible one. Furthermore, I have known the frustration of having Willie's issues be the focal point of family life.
On the other hand, however, I concur with the siblings quoted in the feature who say that being a brother or sister to an individual with special needs or autism has increased their levels of compassion, sensitivity, and maturity. Thanks to being Willie's older sister, I possessed an immediate advantage at my first job at L'Arche Greater Washington, DC. When I served as a direct-care worker at L'Arche, I found myself giving thanks for all my brother had taught me: How to pay attention to seemingly-minor environmental irritations and thereby avoid potential meltdowns; how to follow a routine and also incorporate necessary deviations; how to respond with a calm presence and demeanor in the face of another person's anger. When I worked as a full-time caregiver at L'Arche, I found it natural to remember snacks and lunch bags, check the gas gauge the night before, and start my routines right on time. The list goes on and on; I knew how to offer support in difficult situations not in spite of my brother, but because of him. And I knew better than to judge based on first impressions; in fact, some of the people I found the most intimidating at first became my closest friends. Moreover, in living the lessons my brother taught me, I gained a greater acceptance of him as he is, not as I might wish he would be.
In a previous column, I mentioned that I was doing research regarding how to do job interviews. As part of this research, I recently attended a local job fair in the hopes of gathering more information and experience regarding the interview process and to hopefully find more writing work in my area. I was very successful in fulfilling at least one of these goals.
The fair attracted a fairly large number of job seekers. It was held in a local public building with about 30 booths and tables set up around the premises. My mother and I attended together and she explained how a job fair worked. She explained that I may have the opportunity for an interview at the fair so I made sure that I was dressed appropriately in office attire in case an opportunity did present itself. We pre-registered so that we did not need to register when we arrived which really helped me because I did not need to concentrate on filling out paperwork as people milled around me. We checked in and then waited with the growing group of other job seekers for the fair to begin. It did become a bit noisy, but the fair workers were very organized and everyone remained calm and orderly which kept me calm.
Each booth or table was staffed by a company, agency, or union presenting certain positions or services which could be of interest to attendees. I was surprised to see the variety of entities which had come out to the fair including some industrial manufacturers, a few local unions, and many social service and health care providers. Their displays showed what positions and services were available. I spoke to most of the representatives at these booths about what they were offering; they were all very helpful, and I enjoyed our conversations. Many of the companies were seeking people with backgrounds in math, science, engineering, manufacturing, and other fields of expertise. I, of course, was looking for writing opportunities. Unfortunately, there were no vendors in need of writers.
However, there was a table there that had an agency which helps people with disabilities. They have offered to help me free of charge with mock interviews. The agency’s representative gave me her name and phone number so I could set up an appointment for a consultation with her at a future date. She also gave me some pamphlets, booklets, and flyers with information concerning workshops and programs that the agency offers. I plan on utilizing these resources to learn the skills I need for enduring the tribulations of the workplace, using checklists for important information I need for job searches, and learning proper codes of conduct for job interviews. I am sure I will rely on them often as my employment search continues.
I was also very surprised to find some representatives from a local public library at the fair. They turned out to be especially helpful because, as I spoke with them, I found out that they also offer free services that could help me to significantly revise and develop my cover letter, resume, and reference contact sheet so that they reflect the qualities employers expect from job candidates in today’s market. Furthermore, I learned that the library’s computer system is available to me at no cost to search for additional writing opportunities in my area. I got the name and phone number of the library employee that coordinates this service. I honestly did not expect the public library to be able to help me in so many different ways relating to my career, but I am glad I found it and will certainly take them up on their offer of help soon.
I feel that my first job fair was productive and informative, and I navigated it with no problem. I learned a lot about the sheer variety of options for work available in my community and met many nice, courteous people. I also picked up a plethora of helpful materials and learned of the many services available to me in my area which I will utilize to help me as I move forward in my quest for further employment in the working world. I greatly enjoyed this experience, and I would love to visit more job fairs in the future.
It’s that time again. Time to replenish the reservoir of talented folks who help me manage life—mine and Madison’s, my 20-year-old daughter with autism.
I have the process down to a science. Over the last 25 years, I’ve hired 72 caregivers for our family. Some helped me part-time for only a few weeks. Others I’ve seen graduate from college, get married, and have their own kids. One has been with me 19 years.
Many remain Madison fans, still close to our family.
But even with such success behind me, restarting a search for good care can be daunting. The process I’ve created lessens the anxiety, but not the vigilance.
I usually start with an ad in the local college newspaper. Although the same ad is online, the applicants tell me the print ad is still the most effective. The ad needs to target both the core responsibilities and the environment, clearly stating any requirements.
After a swap of email addresses and a few phone calls, I ask each applicant to fill out a four-page questionnaire I’ve devised that captures the details I want to know.
It’s difficult, I’ve learned, to interview face-to-face and remember to ask about all the details that matter.
But first, I had to take the time to decide what did matter.
From my recruiting days at IBM back in the 1980s, I learned the importance of constructing “job-relevant” criteria.
What is the job? What are the skills needed to do it well? The more specific I can be about my needs, the better and faster I can screen the applicants.
As one colleague shared with me years ago, hiring is about three elements: Can Do, Will Do, and Fit. The selection process should be designed to pull out that information.
The “Can Do” translates into an Experience/Education section on the questionnaire. Designed to probe job-relevant specifics, it contains questions like, “Have you worked with children with special needs?” And, “What child-related education/classes have you had?”
As for “Will Do,” checklists help.
“Check if you are willing to do or assist with,” that section begins. Ten to 15 duties are listed, from running carpool, meal prep, and helping with homework to scooping out the kitty litter. (I rarely ask anyone to scoop the kitty litter, but I want to know if they are willing to do it!)
As for “Fit,” I use several open-ended questions: “What do parents like most about you?” “What do children like most about you?” Then I conclude that section with another checklist where applicants self-assess on a 10-point scale attributes such as timeliness, initiative, organizational skills, and tidiness.
Then, of course there are the references, availability, and wage questions.
But the most important question, I save for the interview:
“Have you worked with children who have difficult behaviors?”
The reaction to this question is a critical.
The answer is not as important, however, as is the way it is answered—the confidence, tone, and the manner the applicant speaks about the topic. Most often, I make my hiring decision based on this discussion.
The best caregivers have been those that possess a quiet, observant demeanor, and are quick to learn. And being tough, mentally and physically, is a big plus, too.
For on occasion, my sweet missy Madison can be a little unpredictable, challenging her caregivers.
There was the time she realized the sitter was upstairs and promptly shut the door on me in the bathroom, bolting out the back door to the local school playground. Or the time she tried to climb out the second story window when the sitter caught her half way out. Or the time she had an upset in Wal-Mart that prompted one shopper to ask my sitter, “Do you need my belt?”
Over time, the caregivers learn how to anticipate Madison’s moods and needs.
The challenge for me is to continue to accurately anticipate mine as she moves into adulthood.
First published September 26, 2011.I’m that mom. You know the type: the ones that make that sucking sound at the sight of a toddler toddling? The type whose reaction to a boo-boo causes the child more distress than the actual boo-boo? So having a 16-year-old in need of some practice with “independent” living skills has been a bit of a stretch for me. Through much knuckle biting on my part, I have learned to stand back and watch as my son scrambles up from a half-eaten breakfast to quickly brush his teeth while the school bus (thankfully) waits patiently. It only took four times of me suggesting he set his alarm 10 minutes earlier before he was actually ready when the bus arrived. This independent living stuff is a dual track learning curve. Not only does my son need to learn the skills I’m trying so hard to impart to him, but I need to learn to let him make use of these skills. My son participated in a fabulous 2-week summer camp at the Smithsonian Institution this year. It was an all access multi-media camp for high school students with a variety of disabilities. My son was the only participant that traveled to and from the museum independently. He took the Metro, which required one train change and a scooter ride to the Metro station from home. The first two days of camp, I went along with him. On the second day, I tried to let him lead, and internally made that sucking sound when he went to the wrong side of the platform. And then he headed towards the wrong station exit. I was nervous. I asked him if he wanted me to travel with him one more day. What he said to me affected me in the same way as did his first spoken word. He said, “How will you know I can do it, unless you let me try?” Wow. Every day he traveled to and from the camp without incident. He called when he was entering the metro station, and called when he arrived at his destination each way. Some days he would call to say he was going to another museum after camp let out. He never forgot to call, so I never had to worry. (I was on worry alert. I knew exactly when to start worrying if the phone didn’t ring, but it always did.) The last day of camp I got a call five minutes after he called to say he was leaving camp. His fare card was low, and he couldn’t get through the turnstile. I tried talking him through adding money to his card over the phone. It didn’t work. He was overly frustrated and I couldn’t figure out how to work a machine I couldn’t see. Finally, I told him he would have to hang up, and ask a Metro employee in the station to help him. And do you know what? Within five minutes I received a call that all was fine and he was on his way home. I’ve found that the more independence he discovers, the more he wants. And that is a very good thing indeed. As for me, I’ve gotten quite good and internalizing that sucking sound.
Yesterday was a very rough day for Cody. When he got up he seemed to be fine. But it wasn’t long before he started having behavior issues. Grumbles and groans started to emerge. Then he began hitting his head. Trying to get him to tell us what was wrong was useless. And no amount of warnings of consequences if he didn’t stop did any good whatsoever. But sometimes behavior issues are indicative of something more than a bad mood.
When Stephen arrived they began their chores as usual. Cody continued to engage in negative talk and acting out. I intervened at that point and told him a timeout was in order. He sat on the sofa for five minutes and seemed to calm down. So he and Stephen went on their outing as usual.
A couple hours later they arrived back home. Stephen promptly asked for some Tylenol. Cody had done nothing but complain the entire time they were gone and this left Stephen with a headache.
They struggled through the rest of the day, but it was less than productive. This was a very off day for Cody, and poor Stephen was at a loss as to what to do.
Stephen went home and we went about our normal routines, cooking and cleaning, taking showers and attempting to settle in for the night. Cody was still no happy camper.
When it was time to go to bed, Cody was more than happy to get there. But I could hear him getting up and down over and over again to use the restroom. That’s when it dawned on me that perhaps he had a Urinary Tract Infection (UTI).
Communication barriers like this are extremely frustrating—not only to the individual with autism, but to families and caregivers as well. It’s so easy to assume that behavior issues that arise because of them are just acting out and that redirecting or a stern talking to should rectify the problem. When typically useful behavior management techniques don’t work, everyone is left frustrated and confused. And when the parent or caregiver finally figures out there is physical discomfort at the heart of the matter, you are often left feeling about two inches tall.
But how do we overcome this kind of scenario? It’s important to those in charge of caring for a person who has difficulty communicating not to beat themselves up when they miss the mark on what the real issue was all along. Instead, use this experience to learn and think in terms of pre-emptive strikes for future events like this. Don’t automatically assume that a bad attitude is at the root of bad behavior.
Watch for signs and symptoms that may indicate an illness or unseen injury. I learned that sometimes when Cody hits his head it is because he has a headache. Sometimes his grumbles and groans are a sign of lack of sleep the night before. Once, he kept procrastinating when I told him to come upstairs. It would have been very easy to write that off to inattention or being lackadaisical. But upon closer examination I noticed him limping. A trip to the doctor and an x-ray later we learned he had fractured the metatarsal bone in his right foot. Imagine how I would have felt, had I not been paying attention then!
As always, continue to work with these individuals on proper communication. Use visuals and practice this part of communication on a frequent basis. Cody and I have a ritual we do when I see certain behaviors beginning to surface. I start at the top and work my way down. “Cody, do you have a headache?” “Cody does your neck hurt?” And I continue on from there.
One thing I haven’t often thought about asking him, however, is whether it hurts when he goes to the bathroom. We tend to think of UTIs as a problem unique to women, but men can get them too. (At the time of this writing, we haven’t found out if Cody has one.)
Being unable to verbalize pain creates a difficult situation. But looking beyond the surface of inappropriate behaviors to find hidden clues of illness or discomfort may just save everyone a lot of unnecessary grief and heartache in the long run.
“I brought a surprise for you, too!” I said as I bounced up the stairs of my family's Hilton Head vacation rental last week. As I'd expected, my parents had had a few gifts stashed away for me, and now it was time for me to share something with them. With a flourish, I unfurled an extra-large Autism After 16 T-shirt. The thick black cotton shirt says, “Autism After 16: Because Everyone Grows Up” on the front.
I'd brought an extra-large shirt with me to offer my family some flexibility; either my dad or my brother, Willie, could wear the tee if they liked. I was excited to see one of them wearing it. After all, I feel proud of the work that we do at Autism After 16, and glad that we celebrated our one-year anniversary recently. Even so, I'd also had reservations in bringing the shirt in my travel bag. Specifically, I'd thought about whether or not my parents would hesitate to have Willie wearing an autism-related shirt. I wondered: How much does Willie know about autism in general, and about his own autism in particular? Would it be somehow unfair or inconsiderate to give my brother a shirt that shares his diagnosis openly with the world? On the other hand, would it be empowering for Willie to wear it, to share autism as a part of his life?
Willie wears shirts with logos on them all the time; that night, I believe, he was sporting a forest-green tee from my days at Vassar College. The shirt is what I like to call, “Vintage VXF” (Vassar Christian Fellowship), and it's been part of Willie's wardrobe for years. But even though Willie was sporting a shirt that shared a religious belief, I had a feeling that the Autism After 16 shirt would be different, and I was right. As I held up the shirt for my mom, I could see thoughts flickering across her face. She asked who I'd intended it for, and I said, lightly, “Oh, you know. Either Dad or Willie, whoever it fits best.”
To her credit, my mom shared what was on her mind with me. I could see her considering her words with care as she said, gently, “What do you think about the idea of Willie wearing it? I mean … do you think that it would be appropriate … ?” She trailed off, but I could sense the rest. She meant: What do you think about potentially proclaiming your brother's autism to the world, when he may or may not have a firm grasp on what that means, or what it might signify to others? I was touched by how she invited me into the conversation. I could tell that the topic made her uncomfortable, but I could see that she was open to what I thought.
“I've been thinking about that,” I said. “I get that it's sensitive, and I wouldn't want Willie, or you, to feel uncomfortable. And if he were to wear it, we'd have to talk with him, try and explain what the shirt signifies. I just wanted to share it with you because I'm proud to be a writer there … and, after all, I'm part of the world of autism because of Willie! But I think it has to be his decision. For it to feel right, I think it has to be something he chooses consciously.”
My mom nodded. “Thanks, sweetie,” she said. In her face I could see years of facing unexpected questions like this one, the strain of parenting in uncharted waters. All at once, I saw the uncertainty that comes with loving someone “different,” with leaving normal not just once, but over and over again. Needless to say, I hugged her tightly when we said goodnight. I didn't know what would come of it, but I felt happy to see my dad wearing the T-shirt the next day. When he said, “Thanks for this, kiddo,” I saw the gleam in his eyes, the slight smile that told me everything I needed to know. He was proud to wear the shirt, proud of his son and daughter alike, and that felt exactly right to me.
So, I like working at home because that means I can better arrange when I have to interact with people. Especially my boss(es).
As I've also mentioned previously, we have a new baby, K.D. (Kid Deutsch). Emily and I are taking care of her full time until later this fall, when Emily will return to the office and I'll have K.D. full time.
So in a sense I work two jobs—A SPLINT and stay-at-home fatherhood.
You know how some people complain that their bosses don't understand anything that's going on, scream at them without even explaining what's the matter and just in general give them a lot of crap?
Well ...you know the rest.
K.D. can't critique anything I do in A SPLINT. She can't demand I change anything. She can't even criticize me for not doing it efficiently enough. What she can do, at a moment's notice, is bring it to a screeching—or rather, screaming—halt.
No, she can't fire me ... not even if I call her an idiot. (And I sure as heck can't quit ... not that I would ever more than hardly ever consider it.) Curiously enough, so far she's the last person on Earth I would ever consider calling an idiot. (Even if she does yell at me without asking, say, whether I need to take a few seconds to warm up her bottle before feeding her!)
On the other hand, it's not like I can ask her to stick to a schedule. Or even email me what's bothering her, for crying out loud!
Speaking of which, like many bad bosses K.D. is shockingly technologically behind. She can't even use a phone, much less listen to a voicemail or send an email. In fact, I wonder if she's even literate!
(Of course, that could change 10 or so years down the road, when she may be able to email, text and even Facebook-message me ... along with all her friends. Or maybe by then it'll be holograms or mind waves. Then I'll worry about data charges, not to mention if when she breaks/loses/gets robbed of her device!)
Sometimes all she wants is just plain companionship. You've had bosses who needed hand-holding and soothing, right? Not to mention those who like to call surprise meetings all the time?
And of course, we've all had bosses who left messes and expected us to clean them up. Who focused entirely on the here and now, and wouldn't listen to anything you tried to explain to them. Who needed us to drag them kicking and screaming all the way. Who were just plain immature.
K.D. is the most exacting, disruptive and impulsive boss I've ever had. She combines the worst features of the worst bosses I have ever had. (And I've had a few doozies—though I'll be the first to admit that at least one or two of them were likely doozies-only-for-me.)
And Emily and I love her just the way she is right now.
Somehow, we are screeching up to the end of September, and I have NO idea how that happened! I find myself questioning what back-to-school time is like for the typical household. Is there such a thing? This is the first year in about the last 15 where I was not getting two children up out of bed, fed and out the door in the morning, as one is now off to college where he is presumably getting himself up out of bed, fed, and out the door. Furthermore, it’s as likely as not that my 16-year-old will be gently checking to see if my alarm has gone off as vice versa. So the life of a mom-with-kids-in-school is definitely winding down.
I have come to recognize how extraordinarily helpful it would have been had my Asperger’s been diagnosed before I embarked upon the seemingly endless cycle of getting children up out of bed, fed, and out the door in the morning. My Asperger’s, when directed towards the positive, provides me with a source of great strength and more recently, a willingness to tap into that strength for good rather than for near-constant self-recrimination. “Normal” for me has never been normal and it is only in the last few months that I find myself seeing the ways in which I can finally consider myself a grown-up. For all of the time that I spent berating myself in the past for an inability to just do the next right thing because it was the grown-up thing to do, it’s hard not to look back with some regrets. But regrets don’t help me be a better mother, or teacher, or grown-up who happens to have an autism spectrum diagnosis. I can look back and regret that not valuing myself enough to recognize when I needed help did not make back-to-school time any easier over the course of my children’s lifetimes. It has always been about hanging on by a thread, waiting until the last second. (How many times can we hit that snooze button and not have to write a note explaining why the kids are late to school?). Back-to-school for my children was, as I’m sure is the case for most families, an enormous transition. Factor in me getting them ready for back-to-school, and the result was hyper-vigilance mixed with obsessive-compulsive school-supply-shopping trips. I timed out everything just so to ensure that as much was done that could possibly be done ahead of time, so that when I felt the inevitable shut-down mode coming on, I would have some slack. Cutting myself the slack scared me to death, however, when it meant allowing an opening for the feelings of laziness, worthlessness and self-pity to march on in … usually by about this point in the back-to-school time of year.
So, I am more than a bit relieved that the changes that have shifted my little universe over the last year or so—since my “officially official” Asperger’s diagnosis—have enabled me to truly internalize so much of what I spent years trying to impart to my children, and later my students. Strategies work when you actually use them. It’s okay to be wrong sometimes. It’s okay to be late for school sometimes! It’s okay to stay home when you’re sick—your classmates and teachers don’t want you around when you sound like your ready to lose a lung! Organization is good; it does not always have to morph into obsession. Taking care of yourself is good, and it does NOT mean you are lazy or worthless.
My favorite part of this year’s back-to-school time is the mornings. Anyone who has known me for longer than the past year who is reading this needs to stop laughing for just a moment and allow me to explain. I don’t hit the snooze button anymore—I wake up to a favorite Mozart tune on my phone, and with enough time that rushing around like the Tasmanian devil is a thing of the past. I have clothes hanging up in the closet to choose from, which is more streamlined than digging through a laundry basket or weeding through the pile on the dresser. I have a lovely little dining area where each morning—because there’s plenty of time now—my daughter and I can sit and have a peaceful meal to start our days while being entertained by our cat. No pressure, no muss, no fuss.
I could get used to this self-acceptance thing. Now, if I can finish out the month without looking back with regret over the past however-many years that I basically tortured myself at this time of year and missed out on so much peace along the way, all will be well … and I’ll have one more back-to-school time to look forward to.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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