Commentary

Every day I live with and struggle to compensate for my autism. It pulls at my brain’s strings like an invisible puppeteer, controlling every mental and physical move I make, affecting the way I communicate with others, and gives me very little information back regarding my surroundings. At 23 years old, I now recognize most of the strings, and I move more freely, but I also know that they will never completely go away.

I think it is hard for other people to understand these struggles within me and the restrictions they put on me because I do not exhibit many of the visible signs one would typically associate with a disability; I do not “look” disabled. So, I thought it might help if I describe some of the more “invisible” aspects of my life to help people better understand me and autism in general.

For instance, as I am writing this, every so often my attention is drawn away from the computer for reasons which I cannot fathom and which only make sense to me when I am in the moment. During one of these “mental breaks,” I find myself lost in thought about nonsensical, abstract ideas and it is hard for me to break away from them. Many times someone has to bring me out of my deep thoughts by speaking to me. During these “breaks,” I am truly alone in my world without knowledge of time passing or my immediate environment.

I also have other issues with losing focus. While I pride myself on being able to recognize small details others may not notice, this sometimes causes me to lose track of things I should be concentrating on. I might get stuck on one particular idea, thought, or step and temporarily forget about the rest of the task or activity I am engaged in. At these times, I either remember the other concept much later than I should and then act on it, or other people need to remind me of what I have yet to do. Either way, it puts me way behind with my main goal of completing the task at hand. 

Furthermore, my autistic mind is especially concerned with perfection and having a controlled environment. If something is out of place or in a position that I do not like, I notice it right away and become anxious over it until that detail is put back to the state I desire or until someone can convince me that the alternate state is okay to have. Outside environments drive me nearly up the wall. They are chaotic to me, and even though I can sense a natural order flowing through them at times, I do not always feel I am a part of it. The wind and insects bother me. Sometimes the mere openness of it all is too much for me, and the unpredictable nature of nature itself can make me anxious. I do not like to be surprised by things I cannot control. I much prefer a perfectly orderly environment, but I also understand that I will not always have it.

An area that severely affected me when I was younger was my hypersensitive sensory system. Most people are able to handle being bombarded with many different types of stimuli because their brains have the means to process it all. As a child, I had no such means and it could be extremely overwhelming. To me, it felt like the Energizer Bunny beating his drum directly into my ears, an MTV music video hypnotizing my eyes, and a perfume store’s contents wafting continuously into my nostrils with a fuzzy caterpillar crawling all over my body biting down on certain parts of me at the most undesirable times with the force of a ballistic missile—all at the same time and with no way to rid myself of any of these sensations on my own. With the help of many different therapies though, I have been able to compensate for many of my sensory issues, and I do not suffer from as much sensory overload as I did as a child. I can imagine that others with sensory struggles have experienced many of the same sensations as I did.

Another unseen aspect of my life is that I have issues deducing hidden meanings in other’s facial expressions and body language even though I have learned what the proper social signals are. I cannot always put the signals together with a particular facial expression, body stance, or gesture; therefore, I might not understand what someone is trying to express to me unless they specifically state what is on their mind. When I miss others’ signals, they may think that I am being rude, but this is not the case at all. I love conversing with people; it is just that the ability to unravel any unspoken or heavily implied message may fail me at any given time. I realize that, in a lot of ways, my view of the world is shaped by my own misconceptions and missed information. Viewing my environment through an autistic prism makes it harder for me to understand information that others find quite easy to infer. To me, this is the biggest manifestation of my autism as a disability; even though I have physical issues I have to deal with that are visible, the bigger issue is that autism hinders, and sometimes prevents, me from seeing the world in the same way that others see it. I can push through, but I need a great deal of information in order to fully understand what is being presented to me; especially in a social setting. 

My autism has been a significant factor in how I have led and continue to live my life. I am learning to compensate for and, in some cases, overcome the limitations my autism has caused me. I have often heard people with physical disabilities say that when they became limited in one area, it opened a means to excel in other areas. I would like to think that this is true for me as well. I can have a limited understanding of the world around me and how it works, but I can also voice my perspectives through my writing and help others to understand how my mind works. My autism is an “invisible disability,” but I am not invisible.

“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”

With a fresh coating of ice on the last three inches of snow, I pulled up in front of my computer desk and dialed the number.

No answer.

It was time for Madison’s annual review. When she turned 21, she moved from the school setting to the vocational setting, from an Individualized Education Plan (IEP) to an Individualized Service Plan (ISP).

“I’m not sure if they are there or not,” I texted again, “but I’ve decided we shouldn’t go.”

The meeting was an hour away. My van was pretty good in the snow—extra heavy because of the built-in ramp for my wheelchair—but my driveway had not been plowed nor had our neighborhood access road. I wasn’t sure it was even safe for my sitter to come in to drive me.

I dialed again and this time reached a staff member. Most of the team members had made it in so we decided to press on and arranged a conference call. We had rescheduled twice already, thanks to the ridiculous weather.

We discussed Madison’s residential program, her behavioral plan, and completed a thorough medical review noting improvements in all areas, including sleep. But the most interesting change I heard was in the vocational program.

As we reviewed her goals, I kept hearing words like, “her choice to do,” “unless she refuses,” “she can comply or not,” “if she likes.”

“Is this language different from her IEP goals? Has something changed?” I asked the team on the other end of the line. “It sounds like she doesn’t have to do the work anymore. Is it now all optional?”

“You are correct. It is different,” said one voice. “It’s not entirely optional, but yes, Madison now has the choice to refuse to do the work.”

I learned that because she is 21 and receiving adult services, the provider was required to structure her program that allows for “choice and individual preference.”

As I mulled that over, I wondered about that requirement and the message it sends. Just because Madison is an adult now, she can choose not to do the work? Hadn’t I just spent 21 years trying to keep her on task? Spent extraordinary time, money, and effort trying to figure out ways to address non-compliance? And now that she’s an adult, refusal behavior is acceptable?

Geez.

I’d been taught and taught others to “not give in” to her refusal to do what was asked of her. “Always come back to what she’d refused to do,” we’d learned. “Don’t let her get away with it.”

“Try better,” became our mantra.

After more research, I learned that even though Madison technically has the option to refuse the work per the adult program requirements, she is still encouraged, receiving positive reinforcement for the choice to do the task. She may need more breaks or be allowed extra time to complete the work, but additional rewards are built in to encourage task acceptance.

And, if she makes a choice to refuse to do a task, the consequence may be a challenge to do another.

Choice and consequence. I liked those terms used together.

I thought about my other kids, adults both living 3000 miles away from my hands-on guidance. I’m sure in their work and school life that they have refused to do the work on occasion.

But not without consequence.

And now Madison joins them in the adult world of choices and individual preferences. I can only hope the lessons of “try better” stays with them and serves them all well.

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. The program is deeming itself unique because in addition to training the hard skills needed to perform the job, social and emotional components of the employment opportunity will also be covered by training and mentoring. It sounds like a great idea. But one thing really irked me: There was no clear goal of expected outcomes upon completing the program. Clearly a lot of time and thought had gone into things like assessing, training, and mentoring the candidates. It seemed the wheels were in motion and everything was coming together … But no one could articulate what the “value add” would be for the candidate completing the program. In what ways will a candidate be better off once he or she completes the program? Parenthetically, I asked the group facilitator that question early on in the meeting. I was told “we would get to that.” We didn’t.

This lack of outcomes is a pet peeve of mine when it comes to adult services and postsecondary offerings for individuals with disabilities. Maybe it’s because I’m so deeply entrenched in charting my son Cameron’s future, but it seems the phrase “Transition Services” is catching on like wildfire. Everyone’s talking about it. It’s great that service providers are becoming aware of the aging population with autism. There seems to be much enthusiasm to “do something” for this population. But I fear in the excitement to get going, the ability to “do something meaningful” gets lost in the shuffle.

Yes, maybe doing anything is better than nothing at all. But it just seems to me that everyone’s emotions and enthusiasm are too heavily slanted towards the front end of intake and acceptance and not focused enough on the back end of what do I have to show for this experience? I’m as guilty as anyone of losing focus of the endgame. I’m so intent on finding a postsecondary program Cameron can get into that sometimes I forget to focus on what he will get out of a potential program. And isn’t that what it’s all about? It isn’t about what Cameron will be doing with himself for the next two to four years while he’s “away at college.” It’s about what that two to four-year experience will prepare him for. It is not okay to assume Cameron will come home and live in the basement upon completion of his postsecondary program. He will need to be able to be fully employed, and independent enough to live on his own. Sure, he can count on me for the typical supports parents provide any recent college graduate. But having personally worked at a postsecondary program in the past, I’m all too familiar with the fact that often there is no exit strategy. Time moves on, and at some point enough money has been spent. Then what?

I’m sure there are programs out there that have this outcomes thing down pat. And maybe this developing program will be one of them. But everyone needs to get it down pat. Whether publicly or privately funded, we can’t continue to spend money on programs that aren’t successfully meeting their goals. Or even stating their goals for that matter.

First published September 23, 2011.

Cody graduated high school in May 2004. Perhaps to most people it would have been more of a mock ceremony than a celebration. But to us, we had reached a most significant milestone.

We had the option to leave Cody in public school until age 21. But I, in particular, felt he had gone as far in progression as he was going to with the public school curriculum. Leaving him there would have been equivalent to leaving a 5-year-old child in day care when he was ultimately ready for kindergarten.

Little did we know, the fight we would have to face to get him into a program that either we could afford to pay for out of pocket, or that state funds would subsidize.

Cody needed help with social skills, daily life skills and he still needed help with basic academics that all of us use in everyday life. And my hope was that day habilitation services would be available. Day hab was equipped to address all of Cody’s needs and it would provide one-on-one attention in our own home. It was the perfect solution.

We then learned how expensive these services were going to be and it quickly became evident that it was not going to be feasible for us to pay for them based on our income. So, the next step was going to the appropriate state agency which was, to our surprise, a part of the Division of Aging. The process involved getting Cody enrolled and approved for Medicaid, then the state would assign a case worker to evaluate exactly what Cody’s needs were and find programs and services which state funding could cover.

At the initial meeting with the first of Cody’s case workers, we were filled with hope that the process of getting him enrolled in a good program would be one that would go smoothly and be accomplished in an expedient manner. That did not happen  The State of Missouri was virtually broke. Budget cuts were being passed right and left that were taking benefits and services away from people, not handing them out. After about the fifth meeting, it was clear to me Cody would not be enrolled in a good day hab program anytime soon.

Over the next seven years, Cody, my husband Bill and I met with many caseworkers. It seemed that about every six months we would receive a letter stating that whoever was Cody’s present caseworker was being reassigned to a different area, or they were leaving the agency. It began to seem as though we would continue going to meetings and continue voicing our concerns and frustrations, all to hear the same story we had heard countless times before. All of the caseworkers were both pleasant and compassionate. They all appeared to try very hard to look for ways to find funding for the services Cody needed. And time after time, the phone call came that funding had been denied because Cody did not meet the criteria of being an at-risk client. He had a stable home, and was adequately being provided for in the way of food, clothing, medical care, and all other necessities. In other words, if he was not in jeopardy of being homeless and hungry, or he was not profoundly challenged, then he had to stay on the state’s waiting list. I had begun to lose hope.

I tried researching online to see if there were programs we had yet to hear about. Occasionally, I would find something that attracted my attention. But by the end of a phone call to the establishment, it always ended with disappointment. Either the fees were too expensive or the structure was not what Cody needed.

Finally in May 2011, we saw light at the end of the tunnel. Governor Jay Nixon had vowed to get everyone who had been approved for services, but had yet to receive them, off the waiting list. Funds were released and Cody was approved for a grant of $12,000 per year. When the first of June arrived, Cody was anxiously awaiting the arrival of his first staff, in his first day of services with a local Community Rehabilitation Provider (CRP).

In the weeks ahead, I'm going on the speaking circuit, presenting and keynoting at three autism-specific events. In March and April, I'll be traveling to Bakersfield, California for the Kern Autism Society Conference, to Nashville, Tennessee for the Tennessee Adult Brothers and Sisters (TABS) Conference, and to Lisle, Illinois for The Arc of Illinois Convention. (If you're local to any of these areas, I'd love to meet you in person!) In each forum, I'll speak about my personal and professional experience with autism and special needs. I'll tell stories about what it's like to be a sibling, a caregiver, sharing the lessons that individuals with autism have taught me. 

It's an honor to present at these events, and I enjoy the entire process, from receiving the invitation to hopping off the plane and meeting people in person. (That is, except for booking plane tickets, choosing between the worst of itinerary evils.) Other than that, speaking at events is a dream come true. And yet each time I sit down to write and revise a talk, I'm daunted by the task at hand. What can I say that will be hopeful yet honest, personal yet practical? How can I walk the fine line between optimism and realism? I share from my experience as a sibling because I know it can help and encourage others, but it isn't an easy task. True, I've learned a great deal from my brother and other adults with special needs, but what I don't know remains vast as the ocean. There's still so much I don't understand about my brother's perspective, how his mind works, and how I can best support him. At such moments it helps to remember what fellow sibling Faith Jegede said in her 2012 TED talk, “Autism Through a Sibling’s Eyes,” “... How little we know about the mind, and how wonderful the unknown must be.” 

It also helps to remember that we're still living our story. I love a happy ending, but real life doesn't always fit into pretty boxes. I can share moments of beauty and illumination that I've experienced with Willie, but I can't truthfully wrap every sibling story with a bow and a flourish. When people ask whether Willie still struggles with aggression and self-injurious behavior, I can say that he's doing much better … and that he still has dark days. I can say that he's come a long way … and that he still has a long way to go. Just like you, just like me, just like any of us.  

Each time I present a talk, I take myself and the audience back to the time in which Willie's behavior was at his worst. Back then, the meltdowns seemed to consume everything in their wake. Our parents had to make a terrible choice. Keep Willie home, and stay together in darkness, or find a placement of some kind and enter a different darkness. They chose the former, and in hindsight, I'm glad they did. At the time, though, it hurt. No decision would have dispelled the darkness, but I was so fearful of what might happen if Willie stayed home. 

I love my brother, and I always will … and I went away to college, and I spent a summer living with my extended family. I stayed close enough to come home at a moment's notice, and far away enough to escape. It was the best possible solution in a very challenging time. And perhaps that's why family members approach me after talks, take me in their arms, and say, “Thank you,” through tears. Perhaps it's because they know I understand about choosing between two terrible options, knowing that both will break our hearts. Or perhaps it's because what underlies every story I tell is the fierce belief that—in those very old words: “ ... the light shines in the darkness, and the darkness has not overcome it.”  

As a special educator, I have had ample opportunity to consider the process of Transition to adulthood for individuals on the autism spectrum from a multitude of perspectives. I am amazed at the upheaval that arose over what I thought would be the simplest of discussion topics among my senior class of students—how to dress professionally. After all, it’s not even that complicated, right? Compared to understanding the economics of the current job market or how to find affordable housing, knowing how to dress appropriately for work should be a piece of cake! As it turns out, this seemingly basic employability skill seems to be a hot-button issue.

I felt the need to open this particular Pandora’s Box when the issue of appropriate workplace apparel surfaced for a student entering a new intern placement. This student was being provided with a uniform by his job site and he looked quite the gentleman in his new, well-fitting attire. I was duly impressed. I was then disheartened when he reported for his off-campus job the next day—at a long-held placement—and he was back to technically meeting expectations but looking quite slovenly. He failed to understand my concerns. After all, he was following the rules about the type of shirt and pants and shoes he was supposed to wear. He referred me to the Student Employee Handbook (which I wrote). He was meeting expectations … well, except for the part about not having a belt on … but wait, that wasn’t IN the handbook, so why did he need one? Pointing out that his pants were falling down every time he took a few steps forward was not the answer he was expecting, apparently. As it turned out, he was the tip of the iceberg. I spent several days with a critical eye turned on this student and his peers, particularly those on the verge of hearing Pomp and Circumstance. The next time the students heard from me on the topic, they were clearly less than thrilled.

So what did I tell them? What sage words of wisdom did I pass along to these youngsters? The lecture went something like this:

  • Clothes need to fit. Clothes that we wear to work HAVE to fit.
  • Clothes need to be wrinkle-free, and that means you probably should not roll up your work clothes and stuff them in a bag and carry them around for a few hours like that before changing into them.
  • Pants you wear to work should not be made of denim, unless your boss says it’s okay to wear jeans.
  • Clothes need to start out clean and stay that way, and be washed after you wear them the first time.
  • If there is a uniform you are expected to wear to work, there is no excuse to not wear that uniform. If you think there IS an excuse, then it is something you need to discuss with your boss before reporting for work, not when you report for work.
  • Your clothes need to be appropriate for weather conditions (shorts in February are NEVER a good idea).
  • When your boss expects you to be clean-shaven, it is not acceptable to point out to the boss that so-and-so doesn’t have to shave when he goes to work (at a different location) so why should you?
  • Perhaps the biggest piece of advice on how to dress for success—making sure you are meeting wardrobe expectations is YOUR job as an adult, not your mom’s and/or dad’s. They may still be ready and willing to make excuses for your attire, but it is time to stop letting them.

Suffice it to say that the more I learn, the more I need to learn, which I suppose is not an unfamiliar lesson to most of us in the adult world. I find myself at times overwhelmed with the lessons I am going to run out of time to teach, especially when I would have thought they would be the first lessons mastered and generalized. Regardless, while those caps and gowns have been ordered, they are not on-site yet, so perhaps this part of the transition to adulthood is not a lost cause just yet! 

I have been on a bit of a Roman holiday, literally. I'm lucky enough to be able to accompany my husband on a business trip to Rome. Visiting the Trevi Fountain, the Colliseum and other touristy sites, I'm reminded of the movie, starring Audrey Hepburn and Gregory Peck. Though I'm no princess running away from her royal duties, it feels a bit like an escape from reality—from cold and snow and everyday life. Like Princess Anne in the movie, I know it will end, and I'll go back to what I was doing before this brief getaway.

I felt a bit guilty, because Reilly wanted to come home on the weekend we were to be gone to see a show that is only in town for a few days. But not so guilty that I couldn't tell him it just wasn't going to work out. He took the news in stride, seeming to understand that this was an opportunity I couldn't pass up.

Of course, our contact has been limited to Facebook on this trip, which is how I learned he was sick. It seems to just be a cold, and he's already feeling better. But there's nothing quite like the helpless feeling when one of your children is sick and away from home. Being on another continent just magnifies that feeling.

Me: Go see the nurse tomorrow.

Reilly: Mom, it's a holiday (Presidents' Day). She won't be there.

Me: Then go the next day.

Reilly: I have classes at OW (NYIT's other campus) the next day.

Me: Then go to the nurse before or after your OW classes.

Reilly: (Silence.)

I fretted about how he was feeling, if he needed to see a doctor, if he needed medicine. He complained for the next couple of days, via Facebook, about not being able to sleep because of his cold. I worried about him falling asleep in class, or being too sick to go to class.

A high school friend of his went to visit the NYIT program with his parents that week, and the mom emailed, asking me if they could do anything for Reilly while they were there. "Urge him to go see the nurse, if he still feels sick," I requested. She emailed back the next day that they had dinner with Reilly and some of his friends in the cafeteria and all seemed well. I relaxed.

It's encouraging to know that he can make it through a cold without my help. He seems to have soldiered on, going to class, living his life, like an adult. I remembered middle school and early high school, when he often pretended to be sick, to avoid school. It got so bad that I had to tell him he could only stay home if he had a fever or was vomiting. There were some rough days when I had to force him to go to school, not knowing if I was doing the right thing. We've come a long way.

After a couple days of Facebook complaining, Reilly seemed to be cheerful again. He followed our trip, saying he wished he could join us. He made witty comments on a few of our posts, making us laugh. He's looking forward to seeing us at spring break.

I think he deserves a Roman holiday.

First published January 16, 2012.

Brrrriiiiinnnngggg. There goes the alarm clock. Sniff, sniff ... Yep, that's the coffee brewing. Okay parents, it's time to wake up and inhale deeply …

This column is based on some hard truths. Primarily, the need for a procedure I like to call an umbilical cord-ectomy: the severing of the lifeline between parents and their maturing child that happens after high school. This can be a very pricey procedure, but it doesn't need to be. Unlike other surgeries, this is actually one you can try at home. Many of the providers of postsecondary education options for the ASD population seem to have mistakenly assumed that the one percent of the population with ASD is the same one percent that has all our nation's wealth. (If you happen to be in the part of the Venn diagram that intersects both of these populations, you are excused from reading further.) 

Have you done internet research on the postsecondary options for an ASD student? Have you felt your heart beat a little faster and a warm glow come over as you envision a lovely setting, helpful supports, and the idea of the students gaining independence and employable skills?  Have you clicked on the fee schedule section of the websites? Did you then schedule an appointment with your bank manager and investigate the going rate for donating various body parts?

I know where you're at. I'm in the trenches with my own son as postsecondary needs loom in the not-too-distant future, and I've felt that rush of adrenaline when a program website wraps its arms around me. I've also been employed as an Independent Living Skills Instructor, and in the trenches as a foot solider in a postsecondary program. What struck me in the employee trench is how much of what I was teaching my students could've easily been covered at home, but clearly wasn't. All of my students were fully capable of doing their own laundry, cleaning a bathroom, and preparing simple meals. But the vast majority of my students came to the program having never tried these tasks. Come on parents! Stop assuming a skill isn't there. How much money are you willing to spend to avoid a little parenting pressure? Don't worry. You'll have plenty of opportunities to spend that money on your student over the coming decades. A DIY approach to umbilical cord-ectomy is the way to go.

The most important thing parents need to keep in mind when considering spending the amount of money many of these programs charge is what to expect at the conclusion of the program. Last summer, I attended an open house for a mixed/hybrid model program at a local college. I had found the website for this program months before the open house, and was thinking this would be a great experience for some students. But as I sat in a roomful of parents coming from various locales, the questions they asked surprised me: Will she be able to take art? Where will they grocery shop? How much spending money will he need each week? And then I asked: What do most of your students do upon completion of your program? The answer: Most go back home and live with their parents. And this answer seemed to be of no consequence to the other parents in the room. I'm sorry, but why would I want to spend over $200,000 to have my child come back home? Now if the answer had been: Most go on to live independently and are employed, either part-time or full-time, then Yay! Only one graduate of this program had achieved that scenario. Since I'm wearing my naysayer hat, I'll go ahead and say this: I would venture to guess that the one independent employed graduate could have achieved that status for less than $200,000.

Parents wake up and rise up! Start your own Occupy Independence movement! Pitch a tent in your son's room until that room gets clean. March around your kitchen until your daughter learns to make her own grilled cheese sandwich. You can do this. And, more importantly, your kids can too. And maybe, just maybe, programs will start to emerge with truly meaningful outcomes.

For those who have had a chance to read my columns in the past, you may know that I have a crazy obsession with basketball. I played basketball in high school and have been watching both professional and college basketball since I was a baby. My first internship was at CBS Sports, where I worked almost exclusively on the March Madness Tournament. I am hooked on basketball. Then a few weeks ago my love for basketball joined my passion for autism awareness when it was announced that an Autism Awareness Day in College Basketball event was happening! 

On Saturday, February 1, over 80 Division I College Basketball coaches wore Autism Speaks puzzle pins to help spread awareness during their games. As an Autism Speaks employee, I landed the opportunity to cover a great deal of the event. I interviewed the two coaches that came up with the idea for the day, Pat Skerry and Tom Herrion. Both of the coaches have sons on the autism spectrum and wanted to utilize their sports platform to make a difference. 

This event kicked off a monumental awareness campaign for the autism community. I was on Cloud Nine from the attention it received on television and through social media. Then two blogs were published on the Autism Speaks website that made a huge impact on me. The two blogs weren’t written by coaches, but by two young adults on the spectrum who had watched the coverage from the day’s events, Anthony Ianni and Matt Barnthouse. The blogs made me realize that the impact Autism Awareness Day in College Basketball could have towards adults with autism in college. Using sports venues for autism awareness might create more acceptance on college campuses. 

I wish we could have had this around when I was in college a few years ago. Very few of the students around me had any idea what autism meant. I’m happy that because of the dedication of two coaches, Autism Awareness Day in College Basketball may become a yearly event much like World Autism Awareness Day is in April. 

When you wake up feeling under the weather and weary on a Monday, you know it's going to be a long day. On mornings like these, when my motivation wanes, it helps to remember what is real. And what is real is what I was privileged to witness last week: an NBC Olympics video sharing the story of Alex Bilodeau, an Olympic champion skier, and his older brother Frederic Bilodeau, who has cerebral palsy. It's a simple story, really: The brothers love, support, and inspire one another. Yet it's also a complex story in that these brothers—so close at heart—are at opposite ends of the spectrum that most of us consider “success.” An Olympic champion, and a young man who cannot walk without support? Initially, the juxtaposition of the two brothers and their physical abilities is arresting. And yet, if you watch the video, you realize that their differences are effectively eclipsed by what illuminates both their faces. As I wrote on Facebook, “This is what it's all about. This is what's really important. This is love.” 

Love just shines from them, doesn't it? It's a palpable warmth. When I watched them interact, I could feel an inner cold melting away. To put it in more concrete terms: I just could not stop crying. It was painful, but in a healing sort of way, as though my soul itself was recovering from frostbite. I was fine with that, fine with freshly-applied mascara streaking down my cheeks, as long as it meant that I could stay just a little longer in the real. 

“My brother is my ground … his everyday life brings me to reality,” Alex Bilodeau says, and I know just what he means. When I start stressing out about my writing career, I remember my brother's workdays. For now, my talented-yet-volatile brother shreds x-rays and stuffs envelopes. And even on days when I don't feel well, I know that it is a privilege and a dream come true to earn a living writing. Likewise, when I start worrying that I don't do enough for my family, for my brother, I call this video to mind. Once again, I see that the most powerful thing I can do is love my brother, and let that love lead me on. 

Though our circumstances are quite different, I can relate to Alex Bilodeau. At times, my dream of writing to a wider audience seems like as much of a long shot as an Olympic gold medal. Yet ever so slowly, with faltering steps, I'm growing to be more like Alex in that I'm not dissuaded from taking chances. I'm learning to let go of perfectionism, to trust that my brother wants me to succeed. That's not to say that it's easy to follow a dream. Sometimes my writing feels like a forced march, a trudge through deep snow in which the smallest movements take concerted effort. But every now and then, I look up to see a brilliant night sky. I glimpse something beautiful, and all at once, I'm galvanized to go on. 

That's how I felt when I watched the video of the Bilodeau brothers. It was like hearing Willie sing, “Happy Birthday,” or “Beautiful Kittenfish”—it was a moment that opened windows in my mind and heart. I have not been the same since I saw that video; we are never the same again after these moments in which the real seems tangible and close. But how can I live into that each day? How can I connect with the real, and then pass it along? Because that's what I most want to do. It's the journey and the destination, all rolled into one. 

With that in mind, I take up a pen. I choose a brilliant blue note card from my stack, one that looks like Willie's eyes when he laughs, and I write a note to my brother. It's a simple thing. But after all we've been through—after every complex decision, frightening meltdown, and lesson in forgiveness--I know it's the right choice. Simple things done with love will see us through. Or, in Frederic's words: “Together, we'll get it.” 

The local Special Education Parent Teacher Student Association (SEPTSA) group that my mother and I are members of met recently and the topic of the guest speakers’ presentation was of great interest to me. It concerned the expanding field of Vision Therapy and how it may help struggling students to correct visual processing issues. I believe this could be of tremendous help to the students in my area, but I am hoping that it can also help me with my visual processing problems as well.

During my time in elementary school, I experienced some problems with my visual processing which greatly affected my academic performance. I found common school tasks such as reading the blackboard and recognizing people coming toward me in the hallway quite taxing; just walking down a hallway could be difficult for me. In addition, I had trouble with tracking objects, focusing on spots I needed to pay attention to, and recognizing people and objects if they were oriented in a way I was unfamiliar with. I was able to read a book up close and handle deskwork with few problems, but every other aspect of visual learning was a challenge for me. My parents and teachers could see that I needed help, so my parents arranged for me to have Vision Therapy. These exercises helped me to improve many of the problems I was having in and out of the classroom. I have not had Vision Therapy in many years, but I believe it could help me further because I still have some visual processing issues that I deal with as an adult. I have a hard time crossing the street on my own because many times I cannot tell if a car is coming toward or away from me or if it is moving at all. I have problems in parking lots because there is so much movement between walking people and moving cars; I cannot track it all and make my way into a building without someone’s help. I cannot drive because I cannot visually process everything that is happening around me quickly enough and actually drive a vehicle at the same time; it would not be safe for me to be on the road.

During the presentation, the speakers touched on areas of vision that can affect the way a child learns:

  • “Convergence” means getting the eyes to focus on certain spots. When convergence does not happen, double vision can occur;
  • “Directionality” means determining the positions of certain shapes so one can recognize them. If you are confounded by an inability to tell the difference between the letters “b,” “p,” “d,” and “q,” you most likely have this problem;
  • “Form perception” means recognizing matching objects or recurring patterns;
  • “Span of recognition” means being able to distinguish the form and meaning of a series of words all at once;
  • “Visualization” means being able to form pictures in one’s mind of key concepts;
  • “Tracking” means being able to keep one’s focus on a moving object or between multiple objects at once.

Children with vision issues often find themselves straining to make out small print or text printed very closely together. They may struggle to maintain focus on close-up work and may have fine motor problems. Copying text from the chalkboard onto one’s paper may be challenging, and these children may have difficulties coping with patterns from fluorescent light bulbs. Other troublesome tasks may include: utilizing “bubbles” on standardized tests; decoding a haphazard grouping of spelling words; taking timed exams; filling in crossword puzzle grids; being asked to read aloud without being alerted beforehand; and to immediately distinguish between left and right. A student may also have several different handwriting issues. This then leads to the student having visual processing problems, making it harder for them to comprehend the lesson because it is a struggle to just simply get the information to their brains.

To identify if a person will benefit from Vision Therapy, the prospective patient must first go through an assessment of their visual system to identify any potential problems. Vision Therapy consists of using special optical devices and exercises designed to help patients to retrain their eye muscles to make their visual movements more fluid, less strenuous, and more productive. The patient’s brain is then better able to handle and process the information received from the eyes. The program usually consists of office visits as well as activities to be carried out at home.

I plan on going through my own evaluation soon to determine if I require Vision Therapy. I feel this therapy could be quite useful to a number of people, and I am hoping that if I am a candidate for its implementation, I can improve my own visual processing. If the therapy is successful, I will be able to move more freely without assistance when I am in certain environments. This would then enable me to move forward with another huge step towards my independence! 

I never heard my cell phone buzz.

I’d turned off the ringer during a professional lunch. When I switched it back on, there was a voice message from the director of the program my son Mickey attends.

“Don’t worry, everything’s fine,” she said. “Mickey wasn’t really lost.”

What?

I called my husband Marc. “What’s going on?”

“It’s okay,” he reassured me. “We just had a little ‘adventure.’” (“Adventure” is code in our family for helping Mickey manage unexpected events such as power blackouts.)

Marc told me Mickey had called home and said, “Dad? I’m lost and all alone.”

He managed to ask calmly, “Where are you?”

“I don’t know.”

“Where did the van take you?”

“The mall.”

“And where is your group?”

“I don’t know.”

“What are you doing at the mall?”

“Having lunch.”

“Okay,” Marc said. “Are you near the food court?”

“Yeah.”

“Stay exactly where you are,” Marc said. “Don’t move. I’ll call them right now. The group will find you. Don’t go anywhere. I will call you back in two minutes.”

Mickey’s day habilitation program travels in the community every day. Marc reached the program coordinator in her office. Then he called Mickey’s cell phone. It rang six times, then went to voice mail. He tried two more times. Frustrated and frightened, he ran to his car. He’d only driven a few blocks when his cell buzzed.

“We’ve got him,” the counselor said. “We could see him the whole time. He just didn’t see us.”

“Why didn’t Mickey answer his phone?” I asked Marc.

“It was in his back pack. He didn’t hear it.”

“Better you got his call than I did,” I said, thinking, I might have panicked. Ok, I would definitely have panicked.

When Mickey was younger, he wandered. Or bolted. Even now, when he gets upset he’ll threaten, “I’m going to run away!” I remembered another food court. Another mall, Eighteen years ago. Mickey was 3, Jonathan 8. I sat at a table with them, and watched Marc head back to us with a tray. “Here comes Dad,” I said, turning to the boys.

Mickey was gone.

 I shrieked.

“He went that way!” someone pointed. We ran. Heart-stopping moments later we found him standing with his face pressed to a glass wall, mesmerized by the motion of moving water in the fountain below.

Life is full of landmines, and I know we can never make the world completely safe for him. Still, we do our best. Mickey has carried a flip phone since he began high school. It’s primitive. No apps. No Internet. It’s simply a safety device, an electromagnetic umbilical cord. He likes to check in most days. “Hi, Mom! What are you doing? I’m at Subway. Can I bring you anything?”

Calls never last more than 90 seconds. He just needs to ping us. We have programmed his speed dial with family and neighbors’ phone numbers. Practiced calling and answering. Signed up for the Family Locator feature, which tracks his phone via GPS. He knows his phone and address. He carries an ID card with contact numbers, health insurance information, and a list of his medications. He is as prepared as he can be.

Yet sending him out still feels like a leap of faith.

“Don’t put your phone in your backpack,” Marc said. “Keep it in your pants pocket. That way you’ll hear it ringing and feel the vibration.”

 “I was so scared,” Mickey said.

Me too, I thought. But if I wanted to bolster his confidence, I had to keep my own fears on a tight leash.

“I know you were scared,” I said. “But you stayed safe. You called us. You stayed where you were, and your group found you. You did all the right things. I’m proud of you.”

Note: In the wake of the Avonte Oquendo tragedy, in which a 14-year-old nonverbal autistic boy ran out of his New York City school and was found dead months later, the Justice Department has agreed to fund free, voluntary electronic tracking devices for people with autism and other developmental disabilities at risk of wandering. All applications must go through law enforcement agencies. In addition, anyone who qualifies for Medicaid, Supplemental Security Income and/or other federal programs is eligible to apply to Lifeline Support, a U.S. federal program that makes cell phones affordable to people with disabilities.

Cameron has had a rather interesting week. It began last weekend with a visit to see his dad in Atlanta. Always fun. Cameron was very much looking forward to the coming week upon return from his trip. He had a school dance to attend on Thursday evening. Friday was scheduled to be a half-day of school, which meant Cameron had a free afternoon, and intended to spend it at Dave and Buster’s. Saturday was the second scheduled monthly gathering of the Smithsonian’s All Access Club Cameron recently joined. And of course there was work to look forward to on Friday and Saturday nights. Cameron loves his weekends with his father, but is anxious to get back to work when he has missed a weekend due to a visit. It’s not often that Cameron expresses being excited about coming events, but he was definitely expressive about looking forward to all last week’s scheduled activities.

But all did not go according to plan. Trouble started during the wee hours of Tuesday morning when Cameron awoke with a horrible stomach bug. I cannot remember the last time Cameron was sick to his stomach. I know he must have still been a toddler, so this illness caught Cameron completely unaware. Nothing keeps Cameron down for long however, and he was raring to go back to school on Wednesday. (I was even a little glad he had this experience with a stomach bug, because now he’ll be more prepared if it happens when he’s living away from home.)

Thursday brought us a snow day. School was canceled, and thus the dance was postponed. Friday brought more snow and another snow day. The All Access Club was canceled for Saturday because of the weather. Suddenly, a highly-anticipated week turned into a boring old week at home.

But Cameron did not complain one bit. When asked to shovel a path down the driveway, he shoveled the entire driveway. It took him over 2 hours, and it’s back-breaking work. Though our driveway is short, we have a 4-foot high retaining wall running along both sides for most of its length. Cameron was heaving shovels full of wet, heavy snow up over his head to clear the wall. I watched in amazement at his stamina. While he would certainly never set any speed records for clearing snow, he never gave up. We only had to give Cameron a task, and he set about doing it.

On Sunday, I asked Cameron to clear a path on our deck and stairs so that the dogs would have an easier time getting to the backyard. I thought with the melting that had taken place over the past few days, the snow removal would be an easier job. I was wrong. The melting and subsequent refreezing had resulted in a thick layer of ice. My husband and I were both giving Cameron instructions intended to make the job easier. I noticed that Cameron had a difficult time following our instructions. Had he been left to it on his own, he would’ve gotten the job done, but he would probably still be out there, working away. I hope that Cameron’s reluctance to accept direction was more based on who was delivering the direction, as opposed to his ability to understand and adapt to direction. If I were a manager and had to spend as much time giving instruction as I did giving the deck-clearing instructions … well, let’s just say, Cameron would not be up for employee of the month.

I’m glad that Cameron exhibited flexibility when his highly-anticipated plans were altered due to illness and weather. I do wish he’d been a little more receptive to instructions, but his ability to stick to a task (regardless of if he’s doing it most efficiently) is impressive. All in all, I’d say Cameron handled the “snowbound” situation better than I did.

We just had Cody’s quarterly meeting. His caseworker told us he was not yet at his spending limit for services. She asked us if we wanted to combine the services at his day program with one-on-one services. But I must admit I was hesitant to do that given our past experience with one-on-one aides.

With previous service providers, we had staff calling us at work frequently asking us what to do even though we had care plans in place. Once, it was because the service provider didn’t share a copy of the plan with the aide. We had gone to what I feel was above and beyond the call of duty to make our own schedules of activities for Cody and his day staff, which we posted on the kitchen door. We spent money on academic supplies which would help Cody in learning math, spelling and language skills because the service provider didn’t provide any of those materials. And we also provided a special telephone setup for Cody and the staff to practice calling 911 in the case of an emergency. Only two out of six of the aides we had took the initiative to use any of the tools and verbal instructions we provided.

In addition, we often came home from work to a messy kitchen, with an aide dozing off in the recliner. One aide took Cody to the aide’s home so he could play video games during the time he was supposed to be teaching Cody life skills. This left Cody to roam around a strange house.

One aide took Cody to lunch and left the file which had all of Cody’s pertinent information, along with staff progress notes for the whole month, at the restaurant. He then refused to retrieve the file, stating that he was going out of town for the weekend. We had an aide who took Cody along to have lunch with his family—a HIPPA violation—and an aide who lied to his supervisor about our washer being broken in order to leave work early. And then there was one aide who stole a cheese slicer from us, lied about taking it, and then later said he took it home to show to his wife. Can you see why I was hesitant?

But Cody’s caseworker explained this would be different. Since part of Cody’s goals are to learn social and community skills, the mission of this one-on-one service would be to coordinate with other one-on-one staff to bring clients from his day program together for social outings. They would do the kind of fun activities friends often do together, such as going out to dinner or to the movies. Bill and I thought this would be a great idea. This would give Cody the experience of having fun with his peers without Mom and Dad hanging around. And Cody would have the opportunity to continue learning money skills in the community.

For Bill and me it would mean that no staff would be in our home unsupervised and plans would be made in advance regarding who Cody would be going out to dinner with, where they would be going and what they would be doing. And the staff is employed by the same provider where Cody attends his day program. Since we have had nothing but good things to say about the staff there over the last year, we are pretty excited about Cody having the one-on-one services this time. We are currently waiting on approval for the plan but Cody’s casework said she saw no problems with it being implemented by the first of next month.

We have been very pleased with Cody’s progress over the last year with this service provider. Participation in the program has enriched Cody’s life and we’re very excited to see what the one-on-one services they provide can do as well.

It's week two of our series on siblings and autism employment, and it's time to get practical. Last week's column, "Choosing Togetherness," focused on dreams; this week is all about reality. As I wrote in my introductory column, "A Job Worth Doing," this step necessitates, “ … [making] a list of what you think your sibling may need from a job or workplace now. What may be a necessity in the future—such as receiving a paycheck to help defer living expenses—may be optional for your sibling at this stage. Ask: Do they need a quiet space? A flexible schedule? Transportation? Consistent income? A sense of ownership in their work product? Consider what's optional, and what's truly essential.” 

Here's what I believe Willie needs most from a job at this stage: new and engaging experiences. At his current day program, he's fortunate to have paid work, but the tasks are menial, such as stuffing envelopes or shredding x-rays. At present, he doesn't need additional income; his expenses are covered by his paychecks, benefits, and our parents. Instead, Willie could use a job that asks more of him. He's highly capable, and many of his abilities aren't utilized in his present work. Furthermore, I have a hunch that a more interesting job might well improve his behavior. Next, Willie's ideal job would incorporate his interests. As noted in my previous column, Willie's diverse areas of expertise include music, movies, dogs, athletic activities, foreign languages, and jokes. Additionally, I consider physical activity an important piece of my brother's employment puzzle. Willie is strong, and expending energy helps moderate his moods. It may help to decrease the likelihood of violent meltdowns as well. 

That said, it's also important that Willie continue attending a day program, at least for the foreseeable future. His daily routine lends stability to his life, allows him to interact with peers and teachers, and gives our parents much-needed time to work for themselves. Having spent time pondering each of these factors, I made a call to our Mom to discuss the possibilities. And as it turns out, the timing of our conversation couldn't have been better. Willie has his annual planning meeting coming up in just a few weeks, and Mom had been turning over the employment question in her mind as well. 

During our conversation, I learned something new: the structure of Willie's current day program. As Mom explained, the adult training center he attends is divided into three distinct sections. (The program supports individuals with all kinds of physical and developmental disabilities, not just autism.) Participants are grouped in either the general section (which features a loud, open workroom environment that would likely prove unsustainable for Willie), an accessibility section (which is especially for those in wheelchairs with significant mobility challenges), or the “behavioral unit,” for individuals with challenging behaviors. Willie, of course, is a part of the behavioral unit. 

“Wow,” I said. “So basically, there's no space for him to get beyond the behavioral unit, right? Even if he doesn't have challenging behaviors at work, there isn't another good option for him there. And Willie's smart, so on some level, he probably knows that.” 

“True,” Mom replied. “And from what I hear, he's been doing well at work; the problem behaviors happen in the afternoons, after work. It's like he carries around stress, then explodes.” 

Our conversation turned to the possibility of having Willie transfer to a new day program; specifically, one that's tailored to young adults with autism. Since Willie's been attending his current program for several years, such a transfer would be a major change. Then again, it might also offer a much better fit, with room to grow. As it happens, such a program exists, and it's within walking distance of my family's home. This day program was, in fact, our parents' first choice for Willie when they began transition planning, but at the time, there were no slots available. However, Mom heard that they've received additional Medicaid funding since then. I couldn't help but feel hope taking flight, with questions in its wake: Would this day program be a better fit? Would Willie be happier? Will they have a spot?  Only time will tell. 

When it comes to being a Supported Employment Manager, it is just as important to listen to the individuals as the staff for problems with the jobsite. When I have a problem with something going on with my job, I can just go to my boss and express to her what is going on and we talk about how to fix it. Someone with autism may go to the staff with a problem at the jobsite and the staff may think they just don’t want to work. Sometimes it could be that they just do not feel like working; sometimes it could be a real problem and they have challenges expressing what is wrong. 

In a previous column, I wrote about an individual who had four jobs during the week and was overworked. So he would start flapping his hands and talking loudly because he was stressed and that was the only way he could express it. Every individual has their own way of expressing something; it’s important to know how to listen to them and figure how to help them with the problem. In this case, the problem was solved by taking the individual away from his one volunteer job and keeping the other three paid jobs. Since then he has been working very hard at all of his jobs and has not had any problems with being overworked. 

For an individual who is higher-functioning, it is a little easier for them to express what is going on with their work. The only problem is if the individual has a history of making up something to get out of task. It can then become difficult to figure out what’s true. One individual on my caseload has a history of making up injuries and illnesses to get out of work. So when I started getting letters from him about his back being hurt and wanting to quit his job, it started raising some red flags for me. After sitting him down and actually listening to him for a few minutes, I determined that his back was really bothering him and he needed to be removed from his job. 

I presented this problem to my boss, but she believed he was simply trying to get out of work and wanted to leave him at the worksite so he could keep making a paycheck. The individual refused to work and kept writing me letters about his back hurting and hating the job. So I made the decision to pull him out of his job before he got hurt anymore, in spite of the loss of the paycheck. Now after a little time and learning what this individual can do, I found him a new job doing something he likes. Plus it is something that does not hurt his back. Does this mean he will come back to me a few months from now and say he wants to quit this job?  Possibly. But like many people, he wants to try out jobs until he finds the one he likes and will work hard at. 

If you are working with someone with autism or if you are a manager that has someone with autism working for you and a problem comes up at the jobsite, I urge you to listen closely to determine what might actually be wrong. Autistic adults have problems with their jobs just like you and me. Like anyone else, they simply need someone to actively listen to their concerns.

I recently celebrated my birthday, with a long weekend in a warm, sunny place, accompanied by a long-time friend who shares my birthday. We were born on Groundhog Day, and we both endured the childhood jokes about whether we had seen our shadow, because, of course, the groundhog is the official prognosticator of spring's arrival. 

So it was maybe fitting that, after we watched the sun go down over the spot where the Atlantic Ocean meets the Gulf of Mexico, we decided to visit the psychic who had set up shop at a card table in the square near the pier. We opted for both the Tarot card and palm readings and took turns having our fortunes told. It was generic and largely unmemorable, but fun. 

I returned home to a colder and darker place and immediately faced my own prognosticating task, one not so fun. We are (finally) applying for Social Security Disability Benefits for Reilly, and I have to write a letter describing his disability and its impact on his future. It's a daunting and depressing job to put into words your fear that your son might not be a self-sufficient adult. At the same time you are doing everything you can to make him independent, and to make him see himself that way, you are forced to write your most dire predictions for his future. And you have to get his therapist and current and former schools to do the same. Suddenly, people who have been nothing but encouraging in the past are doing their best to convince someone that your child will not be able to make his own way in the world. 

It has to be done, I know that, particularly because eligibility will mean access to Medicaid, when he is too old to be covered on our insurance plan. But this isn't a thing I want to have to do. It feels like declaring defeat in a battle I have waged his entire life. I know it isn't, really, and that it won't change how I see him and how he sees himself, or his prospects for an independent, productive, meaningful life. But he will find out (after all, he often reads this column). I don't want him to think I don't believe in him, or that there is anything he can't do. So I probably shouldn't write about it, yet I am, because that is what I do. I try not to hide things, or gloss over the challenges. It's a fine line I walk, wanting to talk to him about autism and his future, while not making him feel different, or less than, anyone else. 

Reilly's eligibility isn't assured. He's likely a close call. But we feel that we have to make the case, just in case. And that's part of the problem. There are no easy answers, no black and white; there’s lots of uncertainty. As a relative of mine said recently, “The unknown zone is a very uncomfortable place to be.”

I think Reilly is in a pretty great place right now. He seems to be happier and easier than he was in his middle school and high school years. Living away from home, at school, earning college credit, navigating a social life—these are all things I don't think he knew he could do, and was afraid to find out he couldn't. When we dropped his older sister off at college during Reilly's sophomore year in high school, he asked, “Will I get to go to college some day?” We assured him he would, but he was skeptical. “I mean a real college,” he countered. That was harder to answer. He's not in a regular four-year college program, but he is taking some college courses, and he's learning a lot of what he needs to be independent and self-sufficient. College life is no longer an “unknown zone” for him. That has given him a huge shot of confidence. 

But while he basks in his successes, I can't help but slip back into that “unknown zone.” What comes next? I know we'll take it as it comes, and continue to look for ways to get him the supports that he needs. I know we aren't throwing in the towel with this SSI application. Maybe it's the midwinter blues that make it feel that way. 

I just really need to get that letter written. I can't seem to get past the first sentence: “Reilly Donovan's disabilities will have a lifelong impact on his ability to function independently in the world when he leaves a supported school environment.” 

And I think I need to write a second letter that starts: “Dear Reilly: You will be just fine. Don't worry. Ignore the shadows.”

Ah, weekends … A rest from a week of hard labor. A time to unwind, relax, and recharge. Who doesn’t love a weekend? Well, someone suffering from being homesick and without enough to do, perhaps?

I understand weekends can be tough for any college freshman still finding his way on campus, but especially so for those who aren’t exactly social butterflies. In my former role as an Independent Living Skills Instructor, I remember quizzing students on how they had spent their weekend. While the program I was employed by provided a structured social outing each weekend, the outings were voluntarily attended, and not always in line with everyone’s interest. This led to some students isolating themselves until the routine of Monday morning rolled around. One the biggest thrills I experienced while working there was finding out a young man had taken my advice and invited a group of fellow students to go to a museum with him. I was always pleasantly surprised when students took the initiative to make something out of their weekend. Sometimes they just needed a seed of an idea for something to do, and they were off and running. Others needed more structured positive reinforcement to encourage social behavior. Regardless of the nature of the student, everyone seemed to benefit from branching out on their own and finding something meaningful to do during the weekend.

Weekend isolation is one thing that I don’t worry about when it comes to Cameron. As I’ve mentioned before, my husband, Cameron’s stepfather, has had tremendous influence over Cameron in ways I never could have. A few years back, my husband started prodding Cameron to “go do something” on the weekends. My husband was frustrated by Cameron spending hours on end in his bedroom, only coming out for meals. Of course, being a protective mom, I felt the prods were a little unfair. How could Cameron be expected to come up with his own ideas to fill his day? Shouldn’t we be planning his day for him? Doesn’t he need more “concrete” instructions in order to have any chance of following a plan? My concerns were unnecessary. Slowly but surely, Cameron began to fill his weekends. Whether with an exploratory trip to the National Cathedral on his bike, or a lunch at his favorite restaurant, Cameron began to fill his weekends. Now, instead of “go do something,” we instead ask, “What have you planned?” Cameron no longer needs prompting to fill his time. He fulfilled his school community service hours by volunteering at pet adoption events. He tracks release dates of movies, and plans to see them accordingly. It has been Cameron’s habit for some time now to figure out what he will do over the weekend long before the weekend arrives. He’s even now taken to planning afternoon activities when he has a half-day at school.

While I’m glad to have Cameron fill his time outside the house on the weekends, I now realize what an important skill this is that my husband prodded him to develop. Hopefully, Cameron will be going away this fall and beginning a postsecondary program. I am confident that he is up for the task, and will welcome the adventure of exploring a new town. After all, going out and about is far better than sitting in his room missing me. Because he will miss me … Right?

Has anyone been listening to all this “Polar-Vortex” talk that has been happening in the United States? With snow, snow and more snow in the forecast, especially where I live in New Jersey, I wanted to talk about the issue of weather which I feel many people in our community can relate to. 

When I was a kid many of my issues were sensory-related. I hated all types of things that could give me sensory overload. At the top of the list was the weather, especially inclement weather. Things like thunder would make me jump, rain would make me shiver, and wind would make me feel extremely uneasy. Now as an adult I’ve noticed that weather has again become a major issue surrounding transitioning. 

I’ve been thinking of these transitions due to the horrible weather we’ve been getting on the East Coast. Every day recently we have a cold day with lots of wind, a cold rainy day, and/or a day filled with snow and it always take me longer to get from Point A to Point B. The main problem I’ve seen so far has been with commuting to work. My commute consists of getting a ride from one of my parents to the subway, taking the subway into New York from New Jersey and then walking about another mile to work. In this commute the problems I am experiencing are: 

  1. It takes me a few extra minutes in the mornings to get extra layers of clothes on for the day.
  2. When I eventually get out the cold messes with my joints. I have arthritis in both knees, so whenever it gets cold out I turn into a snail, which results in taking extra time to get to work.
  3. When it snows or rains I’m always trying to watch my footing. One problem I had as a child—which has only got better slightly as an adult—is with balance. I end up taking small penguin-like steps which, again, makes it a longer commute each day. Having anxiety about falling doesn’t help with the balance issue.
  4. Then there’s the problem with transportation. During the colder months we are usually more vulnerable to delays when it comes to catching the subway. This has made me more aggravated because I like having a solid routine and delays ruin my schedule. 

Overall, what I will say is that I’m a lot happier to be in the place I am now then where I was before. The time management issues of being a few minutes late to work here and there are vastly less problematic than feeling trapped inside by the weather when I was a kid. From the standpoint of being a self-advocate, I’m really curious to see how others on the spectrum feel towards different types of weather. Is it easier on the West Coast or in the South than on the East Coast? Maybe it’s easier weather internationally? 

I’d like to issue a challenge for more autism organizations to address these types of weather issues by forming best practice guidelines that can be sent to individuals on the spectrum and their families. In the meantime, my best advice is simple: Be prepared for any type of weather. Make sure to always have an extra set of clothes on hand with you and don’t leave home without an umbrella! These tips and more can make a world of difference.

When I finished writing last week's column, “A Job Worth Doing,” I had two seemingly disparate thoughts in my mind. First, I thought, I'm so glad I'm addressing the issue of adult autism employment as it pertains to siblings! I'm happy to be sharing ideas and brainstorming ways for siblings to offer support! But then I thought, Oh dear, now that I've taken the time to draw up a kind of “road map” for the process, will I actually follow through with it? Will any other siblings? In that moment, it was clear: While I certainly can't control other people's responses, I can control my own. I can make sure that the words aren't hollow; I can choose to follow through. 

That said, it's completely understandable to me that some siblings won't feel led to engage in this type of effort. Perhaps their lives and families prevent them from diving into the employment foray alongside their brothers and sisters. But I recognize that I'm at a point in my life in which I can offer help to my brother, to our family. I'm a writer. I run my own business, work from home, and enjoy a flexible schedule. To be sure, there's plenty of work to be done, but then, that's always the case. And I can only imagine how much busier and more complex my life might become if or when children come into the picture. If there's ever a time for me to step up, it's now. 

Yet it isn't really a “stepping up” … it's more like a surrender. For some time, I've felt a tugging at my heart. If I had to put it into words, it would go something like: You're following your dreams at last, and now you have the flexibility and time to work with some of your family's bigger questions. Now you might actually work alongside Willie when it comes to employment. And with that, the light dawned: I can use this space to hold me accountable, and to document the journey. This column will protect me from procrastination. (Sometimes, a weekly deadline is a beautiful thing.) 

The first step? To let myself dream on Willie's behalf. To answer my questions from last week's column: “How does [Willie] most like to spend his time? If given free reign, what does he do? List enjoyable pastimes, activities, and skill sets.” Willie loves to laugh and play pranks. He might come downstairs with his shirt on backwards, or his shoes on the wrong feet. He values having a daily routine, a structure, but he also likes to be subversive and funny within that structure. He likes to read and study books, particularly volumes that allow him to learn more about key interests, such as foreign languages and dog breeds. He knows some French, Spanish, and Italian, and he's an excellent mimic. He can imitate accents and sounds with precision. 

He enjoys watching videos and computer time. Willie memorizes the end credits from movies and types them out; he plays a particular song over and over until he can pick out the tune on his piano. He has a piano lesson once per week, and he practices faithfully. His current favorite piece? “Ave Maria.” He can operate every TV, VCR, or DVD player he encounters, usually within seconds. He can focus on one thing for an extended period of time, but physical activity is also important for his happiness and mood management. He enjoys walking the family dog, Chevy, swimming, biking, skiing, bowling, and weightlifting. He's in his element in the water, and he won't come out of the pool or ocean until long after everyone else does. He needs time alone, but he also needs to feel like a part of the group. 

How might these distinctive traits and abilities lead to a job? I'm not sure yet. But setting these things down makes me smile; the list reminds me of how special Willie is. As I often say to him, “Willie, you're my favorite brother.” To which he replies, “Caroline, you're my favorite sister!” It doesn't really matter that it's just the two of us. What matters is that we choose each other.

For the past few weeks, I have felt as if I might go “stir-crazy.” An Arctic blast moved through my hometown, causing near-whiteout conditions every time I looked out the windows and bringing temperatures down into the single and minus digits so that running errands or simply heading out anywhere became decidedly out of the question. I tried to cope with this sudden period of isolation as best I could, but there eventually came a point when I really just wanted to get back outside. Luckily, my mother had ways to keep me busy, keep my mind off the weather, and learn a few valuable life skills in the process.

Coincidentally, this stormy weather came about while my mother was dealing with a problem of her own. She had thrown her back and neck out, so she turned to me for help in taking care of more chores than I am used to around the house. I swept the kitchen floor, did the laundry, and cleaned the bathroom every day—tasks I have accomplished numerous times before. In addition to these, though, I helped my mother with some unfamiliar duties due to her inability to lift heavy items. I was feeling a bit glum after spending a few days cooped up in the house (and with a serious case of writer’s block to boot) and getting a handle on these unfamiliar chores added to my frustration, but as I carried on with them, I did feel quite better.

I worked throughout the days with my mother’s supervision on several tasks, but the chore which most aggravated me was cleaning the dishes and putting them away. Even though I love organizing things, the process of doing the dishes gets on my nerves because I have a hard time manipulating them due to my fine motor skills still being below average. With my mother coaching me, I had to figure out how to clean each kind of dish and utensil, something which becomes quite daunting to me when I am confronted with a tremendous variety of items of all shapes, sizes, weight, and materials. I had to get all of the dirt and grime off each dish with liberal amounts of soap and water in the kitchen sink. The dirt made me feel uncomfortable enough, but water was also splashing everywhere and was all over me as I tried to manipulate each item around in the sink so the water could hit the dirt at the right angles.

Some of the most difficult dishes for me to clean were the two gigantic slow cooker inserts in which my mother had cooked a lovely beef dinner. They were large, heavy, oval bowls which barely fit inside the sink. It felt like I was in a titanic struggle against these oversized pots; they stuck out at odd angles which made the water I applied splash all over the countertop (which I later had to clean up). My mother had placed water in them to soak the hardened areas, but some of the foodstuffs remaining in them stubbornly stuck to the sides. This meant that I had to vigorously scrub those spots until I felt like my arm was going to fall off. The whole procedure of cleaning these unwieldy dishes was undoubtedly the hardest thing I did that day, but somehow, they were cleaned and I felt proud at having survived the battle. 

When the weather cleared, my family and I went shopping for groceries. It was a welcome break from the monotony of staying inside the house, and I was able to do a little personal shopping. When we returned, I helped my mother stock the refrigerator, freezer, and cupboards with all the food. I have helped in this endeavor before, but because of my mother’s back and neck problems, I took on a more involved role this time. It was a challenge for me to figure out how everything would fit into each storage space; some of these items took up quite a bit of room and were big and bulky. Others had to be stored in certain spots, locations which filled up quickly making it hard for me to fit everything in the designated area. My mother taught me a lot about how to properly store it all, and even though I did become frustrated while doing it, I know that with time and practice I will eventually be able to do this task with ease.

To me, doing these chores was not at all fun, but I learned how to do some new tasks and helped my mother by contributing to the house’s general upkeep. I also got a really good glimpse at what it takes to run and maintain a household on a daily basis. I found that even though I do help around the house, it is a totally different situation altogether than doing it all, all the time. I realize that the road to true independence will take time. I will have to strike a delicate balance between chores, writing, and relaxation which I am still trying to figure out. I feel that once I am able to do these tasks quicker and with less frustration, it will be a big step in the right direction. I am, however, very proud of the work I have been putting in around the house. It makes me feel very good to be of help to my parents.

I was expecting the call, but not the topic.

“How’d it go?” I asked Pat, our family caregiver who has been with us for over 20 years.

“It was great, very orderly and no medication issues at all this time.”

The camp arrival process was sometimes lengthy given the precise nature of the medication check-in. Prescriptions, labeling, and camp forms had to match exactly, an understandable requirement for the special needs population that is served by the week-long winter holiday camp.

 “And how was Madison with waiting?”

“She was fine, no problems. She knew the schedule and was happy, in a great mood.”

“Great!” I was relieved. Madison was not a good “wait-er” and prone to upsets if she had to wait too long without knowing what was next on her schedule.

“But, Becky,” Pat said, clearing her throat before slowing down her words, “they wanted me to tell you that if Madison did not sleep well, she may be sent home.”

“What?” I shifted in my wheelchair, leaning forward on my armrests to press the phone harder into my ear. “They said what?”

“They said she is disruptive when she does not sleep. And they don’t have the enough staff to accommodate her when she gets up early.”

“Wait a minute; you said they will send her home? Because she doesn’t sleep well?”

“That’s what they said.”

I could feel the anger heating up the back of my neck, but I didn’t want to alarm Pat and put her in the middle of the tempest brewing in my mind. I swallowed hard and replied in a tight voice, “Okay. Let me get into the details.” And then I added, reminding myself of the calming nature of gratitude, “Thank you so much for taking her to camp.”

I clicked off the phone and with it went much of my grateful spirit as I faced the reality of the situation. How could they do that? That camp is over an hour away. How would she get home? I can’t just run out to get her.

Paralyzed for almost 17 years now, I’ve learned to drive—but never felt safe enough to drive Madison. She can be an exuberant passenger, raising her hands above her head and fist-pumping them in unison so rapidly that the car shakes when a favorite Barney tune or Mary Kate and Ashley video pops into her head.

In fact, I usually have two caregivers take her to camp. If she didn’t stay, I would have to find transportation and with New Year’ Eve on the horizon—the whole point of the camp—who could help me?

But beyond the logistics, the process infuriated me. Madison had been a camper there for almost 10 years. And now I learn that her sleep issues are significant enough to jeopardize her camp stay? They chose to uninvite her then, at check-in, through a caregiver?

I looked at the endearing photo of her on my desk. Bless her heart, my Madison. Like many kids with autism, she’s never slept well—beginning at birth. But whether in my home, or in her residential school, and now in her adult placement, we’ve continued to address it with sleep logs, reviews, and medication adjustments as needed.

 I shook my head, took a deep breath, and began my due diligence. I called and emailed and researched and escalated—all the things we do when we sense an injustice is hovering over one of our children.

I didn’t like the facts I uncovered. I learned that there is a sleep requirement in the fine print of the application. In previous years, it seems that Madison had not been making this minimum. Although I’d received a few verbal reports of some sleep issues (among the glowing reports of her many successes), I didn’t know about the minimum or its consequence. I thought I had addressed any concerns with additional sleep aids.   

Apparently not.

But as I listened to these caring professionals explain the rationale of the fine print, I began to understand. Madison would often wake very early and disturb the other campers. When staff would take her out of the situation, the staffers would not get the sleep they needed.

Did I want that? I’m sure these campers wanted a good camp experience, too. Did I want Madison to take that from them and from the camp counselors who cared for them?

So when the call came two days later that she was not sleeping well, I calmly activated the Plan B I’d devised with the help of the apologetic and compassionate camp staff. Within hours, Madison was picked up and returned to her group home after a quick stop at home for our late Christmas celebration.

As I looked at my daughter’s bright but sleepy eyes, I wondered if maybe I was forcing camp in into her world. Was it time to give this up?

More importantly, how will I know?

And the next day, I began to call and email and research and escalate—all the things we do when we sense a solvable problem (I hope!) is hovering over one of our children.

This week Cameron and I are making our third campus visit. Hopefully it will be our last. It’s a tedious job, finding a postsecondary program. Have I mentioned that before? As if the travel wasn’t tedious enough, there are the applications to contend with as well. So much paperwork goes into the application. There’s the parent questionnaire, the recommendations, the copies of IEPs, student questionnaire, testing results—of which it seems each program has their own unique twist on the types of tests they require. And the recommendations are such a hassle. I hate inconveniencing Cameron’s boss and teachers over and over again! But each program Cameron has applied to requires two to three recommendations, and the forms are slightly different, and of course supposed to be completed without the parents or student seeing the responses, so there’s no reusing a recommendation for multiple programs. You have to inconvenience your reference folks multiple times, there’s just no way around it. And with so many parts coming from so many sources, it’s a challenge to keep up with it all! I inevitably end up giving away my original copy of Cameron’s current IEP, and must sheepishly ask Cameron’s school for another copy.

One of the components of the application that I am always biting my nails over is the student questionnaire. I am always conflicted over just how much support to give Cameron when it comes to completing these questionnaires. Spelling is not his strong suit, and I never know if I should proofread his responses and point out his mistakes, or just let him submit the questionnaire as is, in order to accurately reflect Cameron’s capabilities. For one questionnaire he completed, I asked him to use the spell checker in Word to verify the specific words he had misspelled. The problem is that often Cameron’s phonemic unawareness is so severe, spell-checking programs have no clue what his intentions might be. Mind you, he has made great strides in spelling and reading over the past few years, but anything language-related for Cameron is still a hurdle. I feel that it’s important that any program considering Cameron understand his challenges. I therefore try to remain hands-off when it comes to him completing the student questionnaires. Having worked in a postsecondary program, I am all too aware that parents often provide the bare minimum when it comes to information about their child, and leave it to staff to figure out the missing pieces after the student has gained admission to the program. I don’t want to be one of those parents. But then I wonder if admissions committees read applications with an eye towards assuming the picture being presented has been dressed up to impress them. If I leave Cameron’s questionnaire “unretouched” might the powers that be assume that his submission is a polished one? Would they then assume that Cameron is much lower-functioning than he is?

Sigh … I’ve just decided to present as clear of a picture of Cameron as possible. And that means not dotting every “t” and crossing every “i” for him, letting the letters land where they may.

The Saturday evening before last would prove to be the start of a trial which Cody had never experienced until that night.

Several months ago my sister Connie had been diagnosed with cancer of the lung and brain and her condition was deemed terminal. Now on this night we would stand by her side as she arrived at the crossroads between the finite life of the flesh and the eternal life she would possess in Heaven.

Having been at the bedside of other loved ones as they made this journey, I knew what to expect. But Cody did not. He had never been present during someone’s passing. And since we could not leave him home alone with Bill’s mother, this would be a first for him.

I could see Cody already knew things were becoming more serious earlier in the day. My sister Pam and I had spent the previous night with Connie in her hospital room. Aside from a rare fun weekend away, my overnights away have either been at work, or dealing with a family crisis. It’s been a year since I’ve worked outside the home, so when I arrived home late Saturday morning I was met by my nervous and agitated young man.

He paced back and forth rambling on about being home without me which is his way of giving me the “And just where have you been all night?” inquisition.

Having had very little sleep the night before, I was dog-tired. Nevertheless, I tried my best to be understanding of Cody’s discontent and to do whatever I could to make up for my absence the night before.

Just as Cody had begun to calm down and we were sitting down to dinner, the phone rang and Pam told me I needed to come to the hospital. I would have been content to go alone, but Bill didn’t want me to. So, the three of us set out to endure this tribulation together.

It is a 30-mile drive to the hospital and it seemed it took an eternity to get there. On our way I prayed that Cody would find peace of mind during this sad ordeal.

When we arrived I walked in the room and exchanged silent hugs with Connie’s two sons as well as various other family members. I thought Cody and Bill were behind me but I turned to see them both out in the hallway. Bill whispered to me that he and Cody would just stay out there for a while.

Needless to say, my main focus was doing whatever I could do to see that Connie was as comfortable as possible and providing any comfort I could to her two boys. But I also took breaks to walk out and check on Cody and Bill. I was so surprised to see how well Cody was keeping it all together. He seemed quite content to quietly walk up and down the hallway. It was not at all like the nervous pacing of a caged tiger we are so used to seeing when stress levels are elevated. He was in control. He was composed and mannerly. I was so proud of him I could not help smiling even in such sorrow.

Connie’s final moments came at around 2:30 a.m. the next day. We all stood around Connie’s bed whispering goodbyes and I love yous to her. In tears, we watched the grueling process her body was undergoing. I then turned to see my son looking in from the doorway of her room. He was standing completely still with his hands in his pockets. His demeanor was very subdued but there was an inherent understanding in his eyes which struck a chord in my heart. He was so poised and dignified. I was just in awe.

As I stared at him with strange wonder, Bill quietly asked him, “Do you want to go in?” Cody answered back in a whisper that was barely audible, “Not.”

A few seconds later, Connie drew her final breath and her pain ceased forever.

All the way home, I praised my son for how he had become such a strong young man and how much he had impressed me. I had prayed for God’s grace and peace to be upon my son in this difficult situation. When all was said and done, I knew my prayers had been answered. 

One of my favorite aspects of being a writer for Autism After 16  is the opportunity to hear real, inspiring stories firsthand. (When I read a book or watch a “TED” talk about autism, I know I might find myself interviewing the writer or speaker a few weeks later. How cool is it that?!) I love speaking with individuals, family members, and business owners who do valuable work for our community. When they share their stories with me, I always come away strengthened, knowing that I'm not alone in my hopes and dreams for my brother. And I'm especially encouraged by accounts of sustainable, scalable models of adult autism employment. 

Employment is a problematic area, but it is also imbued with possibility. On one hand, a majority of adults with autism are either unemployed or under-employed. On the other hand, progress is being made. Adult autism employment opportunities are sprouting up everywhere, and I feel a sense of new energy and potential surrounding the employment sector. And after several years of listening to stories and interviewing business owners, I'm realizing that there are some very specific supports that an adult with autism needs in order to overcome the odds of finding employment. Having an unusual or exceptional skill helps facilitate success, but it isn't the only factor, not by a long shot. What I see, again and again, is that a strong community can make all the difference. When others are committed to coming alongside an individual in everything from training to transportation, big changes can happen. 

And seeing others stand in the gap—that is, the space between where we are with autism employment and where we want to be—has challenged me to do the same. I've begun thinking about how siblings like me can help support autism employment for our brothers and sisters. Even at a distance, I believe we have a great deal to offer. Of course, you'll want to connect with your sibling and family members throughout the process, but there's plenty to do on your own: 

First, let yourself dream. Family members do need to be practical, but you are also uniquely equipped to dream on behalf of your sibling. You're a peer, with firsthand knowledge of your sibling's abilities. Also, you may be a bit less protective than your parents, more willing to see your sibling take risks. Ask yourself: How does my sibling most like to spend her time? If given free reign, what does he do? List enjoyable pastimes, activities, and skill sets. This is brainstorming time, time to let your imagination roam free. 

Next, make a list of what you think your sibling may need from a job or workplace now. What may be a necessity in the future—such as receiving a paycheck to help defer living expenses—may be optional for your sibling at this stage. Ask: Do they need a quiet space? A flexible schedule? Transportation? Consistent income? A sense of ownership in their work product? Consider what's optional, and what's truly essential. 

After that, do research. Read about (or better yet, visit) successful programs or businesses. Explore coffee shops, bookstores, and tech startups; learn about why they are doing well. (The AA16 employment section is a great place to start.) Also research your sibling's particular geographic area; you can explore available programs or entrepreneurial opportunities. Do your homework, and try to spot places in which your sibling's contribution would be welcomed. As you do so, remember: Your sibling isn't you. Their tastes and preferences may be radically different from your own. Maybe you can't stand the thought of working in retail—or at a think tank!—but such an environment might be a perfect fit for your brother or sister. They might love and thrive in a field where you'd fail, and vice versa. 

Finally, consider ways in which you might offer practical support, even at a distance. Could you co-create a business plan with your sibling, design a website, or help practice for an interview? You and I have the power to make a significant contribution to our sibling's employment. Let's see what we can do.