In the latest nightmare, I need to teach a college-level course in Geography at a moment's notice. (Isn't that every perfectionist's desperate fear, getting thrown into a situation with no preparation whatsoever?) I stand in front of the class, feeling the sweat on my palms and thinking, Soon, they are going to figure out that I have no idea what I'm doing. Quickly, I invent a feeble icebreaker, inviting the students to share their favorite place on earth. I feel sure that they will start mocking me and demanding a “real” teacher. But then, Willie makes another unexpected appearance on my dream stage, and he saves the day. He raises his hand and begins speaking eloquently about … what? I can't listen; I am too astonished. When he meets my gaze, I can barely contain my elation: Willie is in a college course, blowing everyone away! But more wonderful than his articulate speech is his kind, supportive expression. He looks at me as though he knows I need rescuing, as though he's drawing upon untapped inner reserves to help me. I hate to wake up.
In real life, here's the latest: Willie fell and skinned his knee while out on a walk with Chevy, the family dog.
“Willie, what happened on the walk today?” I ask over the phone, having been briefed by our mom.
“I fell down!” he exclaims. It's as surprising to him as it is to me; both of us have always had good balance. I used to figure skate competitively, and Willie can ski like nobody's business. I search my memory, but I can't remember a single instance of Willie falling on the slopes.
“Oh, I'm sorry to hear that! How did it happen?”
“I … I tripped!”
“Oh, I see … was it just you who fell down, or Chevy too?”
“It was … just me,” he says.
“Are you feeling okay, Will?” I ask, concerned. I'm glad our parents give him the responsibility and independence of taking Chevy out for daily walks, but when he comes home bleeding, I can't help but get a bit concerned.
“Yes! I'm oh-kaayy,” he answers. His voice starts out strong, but then he trails off into a little melancholy syllable. I know that “oh-kaayy” well; it's the sound of my brother in need of comfort. In this situation, we fit into our usual roles: Willie needs help, and I try my best to offer it. I wish I was close enough to hug him. If I could, I'd offer my shoulder, so that he could lean on me.
In real life, our mom tells me that Willie gets frustrated when his shirt rips under the arm. He has to change clothes before his bus arrives. He gets upset at the unexpected event, rolling himself up in the living room rug to de-escalate. He has a rare outburst at work, too. (Given what I know of his workday routine—hours of sitting down and shredding x-rays—I'm surprised he doesn't melt down more often.)
In real life, Willie's annual IHP meeting rolls around. In it, his team discusses ways to help him grow within his present work situation. For example, he can play “Happy Birthday” on his portable keyboard during participants' birthday parties, and he can write one letter to a distant family member per week. These are small, practical, manageable changes. My head understands the desire to maximize potential within this placement, but my heart trips and falls. I can't help but feel like it isn't enough for him. I can't help but wish that we could develop a plan for Willie to transition out of the “behavioral unit” at work, which seems like a self-fulfilling prophecy if ever there was one.
Our parents plan to investigate another possible work placement, but they want to learn more before proposing a shift. It makes sense to be prudent, to do research before setting such a potentially major change in motion. Yet in my mind's eye I remember the Willie from my dream, the one who did more than I'd ever imagined he could. And I believe that he deserves a chance to come to life.
As we get older, one of the major decisions that we have to make is when to retire. For some people, their employer makes that decision for them with a “forced retirement.” Other people make the decision to retire once they have enough money saved up, all their bills are paid off, or they are just tired of working. Individuals with autism in the workforce are not usually thinking about retirement when they get older; all they want to do is work because that is their schedule. As a Supported Employment Manager, I keep asking myself “When do I tell someone that they need to retire from their job?” Another question to ask is “Does someone with autism even know what it means to retire from work?” I am currently facing this situation with one of the individuals on my caseload.
This gentleman is in his mid-70s and has been working in the same job for many years—since long before I started with the service provider. His job consists of working at a Library Collection Center and is physically demanding. There is a lot of walking, moving bins full of books around a loading dock, and organizing the books to go to the correct library. I had to work with this individual one day and the job was even physically demanding for me. So I can only imagine how this individual feels after working every day! Reports from the staff are coming in saying that the individual is taking longer bathroom breaks, taking longer lunch breaks, and needs to sit down more during work. This is slowing down the work for others and is backing everything up at the Collection Center.
When I asked the individual if he wanted to leave his current job, the individual said “No, I want to keep working at the Library.” In his Individual Planning meeting though, he did state that he wants to “Stay at the library, but have a job where [he is] sitting down most of the time.” The only problem with that is the library worksite does not have any jobs that allow our individuals to sit down at a desk all the time. After speaking with my director, the question now is do I force the individual to retire from this work because of his age? The job is a contract job, but the contract is coming to an end and the library has the right not to renew it with our company. Non-renewal would put six individuals out of a job, and I would have to try to find new placements for them.
I know it is not my place to tell someone when to retire or stop working, but in this extreme case I may have to tell one person to retire to save the jobs of six others. While the family also has input into the decision, I need to decide how to best proceed. Forced retirement happens to many people, but for someone with autism, post-retirement opportunities are limited. Do I have to tell this individual he has to retire to save the jobs of the others? I guess that is the big question for me to decide.
The future creeps up on you when you’re busy doing other things. Deadlines and decisions come jumping at you just when you start to relax. Reilly comes home this weekend to start his spring break. That means summer is right around the corner!
Ack! What are we doing this summer? What is Reilly doing this summer? Suddenly, it seems the time is now to figure that out. He texted me a few days ago saying he got an email from the pool where he worked last summer about applications for this coming summer. “Should I apply?” he asked. “Sure. Couldn’t hurt,” I replied.
Should he work at the pool again this summer? Or should we look for something else that helps him build a new skill set? I immediately googled summer school options. A college he’s interested in has an interesting sports management summer class that sounds good, and right up his alley. Another school has an “intensive workshop for success in college,” designed to “help you feel better prepared as you begin or return to college this fall.” That school also has other summer programs for visiting college students, but the course selection is not yet available.
I look at the dates and notice a conflict with my family reunion in Iowa this summer. Reilly turns 21 in June, and, according to a recent Facebook post, “I will finally be able to get a drink with my cousins at my family reunion!!! Even though I hate alcohol, I’ll just buy one and give it to my cousin. June 16 must come quicker!” Uh oh. Can I deprive him of that experience for an intensive summer college workshop? Family, and family reunions give him such joy.
And what about next fall? Should he stay at NYIT another year? When he’s home on spring break, we should visit a couple of other programs he’s interested in. But I made doctor appointments for his spring break, which is not going to make him very happy, but it can’t be helped.
It’s encouraging to know that Reilly is thinking about the future as well. In another recent text, he said he’s thinking of staying at NYIT another year, then transferring to the school’s other campus to enroll in a four-year degree program, possibly in business management. I encouraged him to talk with his academic advisor about the possibilities. Is that the best idea? How do we know?
His Dad and I think a conference call with his academic advisor to discuss the options is in order, this week, before school closes for spring break.
How did the time get away from us? It seems like we just dropped him off to begin his second year, and now it’s time to figure out what’s next, for the summer and beyond.
But, Reilly also needs some time to relax and chill out. He deserves that. Maybe I should just take a deep breath and trust that the future, both near and far, will sort itself out, eventually. It usually does, in time.
Last week, Cameron had an interview with the director of a postsecondary program we are considering. The interview was done via Skype. I was a little nervous about how this would go. Cameron tends to surprise me in the interview process, and usually I’m pleasantly surprised, but not always. Adding Skype to the interview mix made me even more apprehensive. How can you make good eye contact with a computer screen? If you look at the person’s eyes you’re Skyping with, you definitely won’t be looking directly into the web cam. It turns out, my apprehension was unnecessary, as the interview seemed to go pretty well.
The interview was to be one-on-one with the director, but of course I sat within earshot. Cameron didn’t know I was close by, and he was flying solo. We had practiced using Skype and interviewing, and I was happy to hear some of the same questions I had prepped him for were actually asked by the director. There was one question I had forgotten to ask in our prep work: “What is the nature of your disability?”
When Cameron was asked about his disability, there was a pregnant pause. The director offered a clarification of the question. “Many of our students come to us with diagnosis such as dyslexia, AD/HD, Asperger Syndrome …”
“Nope, I don’t have any of those. I’m fit as a fiddle.”
How can you help but smile at Cameron’s response? But at the same time … really?! I thought I had been doing such a good job at coaching Cameron about what to say regarding his challenges! I’ve given him speeches to use when he asks for priority boarding at the airport. When he was seeing a psychotherapist, I asked the therapist to work on a script Cameron can use to explain himself if he gets in a situation where he needs help but doesn’t understand the person offering assistance. I even asked for self-identification to be added to his Transition goals in his IEP. But Cameron still seems to be missing some (or most) of the language around who he is and how that’s different from a lot of folks. Or was this just a question out of context as far as Cameron was concerned? After all, he wasn’t boarding an airplane, or asking someone for assistance, so perhaps he just hasn’t generalized those “scripts” as a statement about his permanent state of being.
I’ve asked Cameron in the past if he recognizes the fact that he’s different. He says that he does, but does he really? Cameron’s differences become more apparent to him when he sees things like his younger cousin getting his driver’s license. It seems to bother Cameron when he starts to put an age with certain accomplishments, and then realizes he’s behind the curve. Oddly enough, spending an extra year in high school hasn’t seemed to bother him. (I’m sure it would though, if that younger cousin were to graduate before Cameron.)
I’m glad Cameron sees himself as being “fit as a fiddle.” And I’m glad that the programs we’re considering have “self-advocacy” built into their curriculums. There is a lot Cameron needs to learn about himself. I’ve been his safety net for his entire life. But it’s now time for Cameron to learn about self-reliance, and as a result, perhaps he will learn more about himself than even I know. Nothing would make me happier.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there. One of those perks is getting asked to be featured in magazines and on websites for different articles. Sometimes I’ve been contacted to get a quote for a news piece and sometimes for an article on my life on the autism spectrum. This is how I started having experience with phone interviews.
When I first started participating in phone interviews I realized something very comforting about the experience. Most of the time I would do these interviews in the comfort of my own home or at my office. I got my first internship, with CBS Sports in New York, on the first try based on a on a phone interview. Later I would land my first full-time job at Autism Speaks through another phone interview process.
I recently had the opportunity to do a phone interview with the Interactive Autism Network (IAN) last week. IAN staff had asked to talk to me because they were writing an article on transitioning to a postsecondary program with autism. I recall how smoothly the conversation was and how I seemed to be connecting right away with the interviewer. When hanging up twenty minutes later, I had the biggest grin on my face!
Since then I’ve had time to reflect on why phone interviews have become second nature to me; most of it had to do with my experience with mock interviews in college. For some reason I never have been as comfortable with in-person interviews as with those by phone. Between my difficulty with making and keeping eye contact and having to focus on and worry about projecting a certain appearance it just never has felt right to me. While in high school I gained the ability—through specific training—to participate in face-to-face communication better, but if I had the choice phone interviews would always be my favorite.
Why I’m anxious to discuss this today is because I’m a bit shocked this hasn’t come up in more employment-related discussions that I’ve had, especially when it comes to hiring young adults with autism. What is usually debated is the value of office interviews versus job shadowing as a means of employability assessment. As more business environments look to employ adults with autism I’d like to see phone interviews considered more often. In an ideal world, after the phone interview if the employer wants to learn more about the interviewee, they could bring them in for an informal get together at their office. That way the potential employee could learn more about their work environment while the employer can get to know who they may be working with and whether they are worth hiring.
We already have some information about how to help adults with autism in the workplace. Things such as STEM jobs (Science, Technology, Engineering, and Math) are seen as strength in our community. Many of these jobs focus on individual projects. If someone isn’t required to work much in groups, an in-person interview may be less important. In the traditional hiring process, an individual with autism may face greatly heightened anxiety, which can be minimized by not having the face-to-face interview.
So as more institutions like the federal government sets goals for hiring individuals with autism, let’s hope they also offer recruiters the skills and techniques to deal with those with autism and strongly consider phone interviews for those who prefer them.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family. The triggering details elude me; I just remember my mom holding up a sign and telling me to be quiet. In any case, I know that my reaction wasn't pretty. My dream-self was entirely uninhibited by her feelings. She stomped her feet, slammed doors, and shouted until her voice was hoarse.
The anger made me into an unstoppable force; I felt as though I could rage forever. My parents and grandparents stared at me as if I'd lost my mind. At one point, someone laughed—as if to trivialize the tornado I'd become—and that caused me to feel angrier still. It was a classic child's temper-tantrum, but my dream-self was grown up. Why was I so upset? What was the reason behind the overwhelming rage and helpless anger? I've been wondering ever since I woke up, tired and “hungover” from the dream.
Yet there was one silver lining moment, one small thing that made the nightmarish experience seem worthwhile. Right in the middle of my dream meltdown, I saw Willie appear before me. The expression on his face was so kind, so gentle. He looked at me as though he understood exactly what I was feeling, exactly what I was going through. No words were spoken between us, but even so, I had the sense that we'd communicated a great deal in that short silence. Slowly, he reached out a hand and touched the side of my face. All at once, I relaxed. That's when the dream ended. I woke up and murmured, “I think that we just had a ‘Freaky Friday’ in the dream. And on a Monday morning, no less.”
What goes on in the dream world is a mystery, but I woke with the distinct feeling that Willie and I had somehow switched places. It felt so real. I'd become the wild, destructive family member, and he'd become the calm, mature, patient one. It was a stunning opportunity to walk in his shoes. Yet perhaps the strangest and loveliest part of the dream was seeing myself through Willie's eyes. (It was akin to the time when he cast me as Snow White in the Disney movie in his mind.) When he approached me, he radiated calm, peaceful energy … the kind I've worked to cultivate during our family's most challenging times.
As I read in “Asperger's Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns” by Brenda Smith Myles and Jack Southwick, “[During the rage cycle], it is essential that the teacher or parent remain calm …. The fewer words … the better, and the fewer gestures … the better.” (Willie's specific childhood diagnosis was PDD-NOS, not Asperger's, but I've certainly found the book helpful when it comes to understanding the rage cycle.) And thanks to my dream, I was able to “experience” the wisdom of that counsel firsthand. When our parents tried to reason with me, I couldn't hear them; my defenses were too high. But when Willie reached out his hand in that simple, kind gesture, I felt safe. I had a sense that he would not judge me for freaking out, that he could still see the good in me.
Furthermore, the dream gave me insight into a possible “fuel” for my brother's meltdowns. My rage was a response to an experience of being controlled. The cause was ambiguous, but the effect was not; it was pure rebellion. I wonder, Is this part of what triggers Willie's meltdowns? “Asperger's Syndrome and Difficult Moments” notes, “The concept of countercontrol is important to understand when working with [students] who experience tantrums, rage, and meltdowns. Many … youth with AS do not cope well when faced with control by adults, so they may try to countercontrol.” So much of Willie's life is determined by other people—people who have his best interests at heart—and I wonder how that affects him. I wonder how parents and educators balance providing support and encouraging autonomy. And I wonder if that dream was a window into Willie's waking life.
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.
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?
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:
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.
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:
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.”
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?”
“And where is your group?”
“I don’t know.”
“What are you doing at the mall?”
“Okay,” Marc said. “Are you near the food court?”
“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.
“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:
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.
As my journey through adulthood continues, I am constantly becoming aware of new and unfamiliar responsibilities as they present themselves.
On a trip to Arizona three years ago, my son Mickey asked to visit the airport gift shop. He rummaged through a display of stuffed animals.
Since I wrote of Cameron’s postsecondary funding dilemma last week, not much progress has been made.
Over the last year or so I’ve talked to parents who have children that have been newly diagnosed with ASD.
Whenever I share stories of my family's experience with Willie's aggressive and self-injurious behavior, I'm always concerned that the accounts will seem over the top to some ...
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