When Cody is sick it is sometimes difficult to tell. If he isn’t coughing, sniffling, throwing up, running a fever or passing out we may not know if he is ill. He just doesn’t show it. He can maintain normal behavior and function through an illness and never give us a clue that anything is wrong. But if someone else in the household is ill then everything goes haywire. Cody begins pacing like a caged animal, rambling like a mad man and spewing every negative thought that races through his tortured mind. His fear of the worst is unmistakably clear.
So imagine what it’s like for Cody when everyone in the house is sick except for him. That’s what happened last week and it was my turn to fear the worst. I was sure we would see the meltdown of all meltdowns.
It all started a Saturday night when Bill began to have body aches and chills. He then spent most of Sunday in bed, which is completely uncharacteristic of him. By Monday he was in the emergency room with a high fever and it was all downhill from there.
On Tuesday, Bill’s mother had to be taken to the emergency room for chest pain that radiated down her arm. Then on Wednesday, I was in the doctor’s office suffering from acute bronchitis. Thursday brought a follow-up for Bill with his doctor and on Friday I was called back in for diagnostic testing after suspicious findings were seen on films from a recent mammogram.
We got a break on Saturday and Sunday, but on Monday of our second week of illness, Bill’s mother had to be taken back to the ER for low oxygen levels and elevated blood pressure. I spent over a week sweating bullets and begging God to keep Cody from a total meltdown. But to my pleasant surprise, Cody was a complete angel throughout the entire duration of this horrendous ordeal.
I was amazed one night when, somewhere in the middle of our nightmare, I was attempting to take care of all of the chores while Bill and his mother were out of commission. I was cleaning up after dinner when Cody took the initiative to clear the table for me. No prompts were needed. And then he took it upon himself to put the placemats away. I just stood there speechless!
After that he helped me by taking glasses of water to Bill so he could take his medication and taking Bill’s mother her cane when she would put it down and forget about it. I had to bite my lip to keep from laughing when he scolded her for not using it like she should. I didn’t reprimand him for it because, quite honestly, she had it coming. He also took care of his hygiene, cleaned his room and brought his laundry downstairs without me asking.
Bill is now back to good health and I am well on my way. The diagnostic films I had done showed no malignancy or any other signs of danger and Bill’s mother will probably come home soon. So slowly but surely things are returning to normal. And Cody has been a trooper through it all. I could not be more proud of him—or more grateful!
This trial has served to enlighten me as to how resilient my son can be. I now see how much he has learned about what it means to endure and overcome. He has demonstrated how strong and brave he truly is. And if he’s not wandering around waiting for the sky to fall, then perhaps I shouldn’t be doing that either.
If I want to have a good relationship with my brother, I'm going to have to be the one to reach out. I accepted that a long time ago. As soon as I moved away for college, it was clear to me: Willie wouldn't pick up the phone or the pen unless I did so first. For years, I assumed that was the only way it would ever be. I know my brother loves me, but I thought I had to take the lead when it came to keeping in touch. And when I left my role as a caregiver for adults with intellectual and developmental disabilities, the pattern continued. If I wanted a long-distance relationship with my friends, I needed to remember birthdays, and send cards, and pick up the phone. Now, however, the times are changing. I've received a delightfully unexpected letter from one of my former housemates, and my brother is sending epistles every week. True, Willie's being prompted by the goal on his IEP, by the support workers at his program … but he's also taking initiative. According to our Mom, he's keeping in touch more often than dictated by the goal.
I'm on the receiving end of letters from home, and it has allowed me to see the belief that I always had to initiate contact for what it was: an incorrect assumption. Perhaps it was true in the past, when Willie's behavior was out of control. But now he's fully capable of maintaining a long-distance friendship with his sister. And is it so surprising that letter-writing works well for us? With letters, there's time to think and measure one's response. There's a greater sense of control than in an in-person conversation. According to Lord Byron, “Letter writing is the only device for combining solitude with good company.” This sounds perfect for an introverted writer and a young man on the autism spectrum. Willie and I exchange letters, and it suits us both. His latest letter read:
I had a good day at [my day program]. I did x-rays, math, word search, word scrambler, and I ate lunch with JP and Todd.
P.S. Thank you for the photo album [a birthday present]. I like it!! Thank you my favorite sister. (My only sister.) Ha!
He's answered a question I asked in my last letter (“What are the names of the friends with whom you eat lunch?”) and I can't help but feel proud of him for it.
“He's been writing to you a lot,” Mom says during a recent phone call. “Granted, it's pretty much always the same thing, but hey, that's OK—he's writing.”
I smile and say, “Yes, he sure is.” I know she's been helping him out a bit with the wording—the “Ha!” in the postscript is definitely Mom's syntax, not Willie's—but I don't mind.
Mom and I chat on the phone for a bit longer; then, she says, “Oh, I wanted to tell you … I was able to visit the new day support program I told you about!”
“You did?!” I exclaim. “How was it?”
“It was wonderful,” she says, vividly describing the rooms, the program founder, the student artwork. And then: “Willie's going to attend for a two-hour trial period later this week … I'm nervous,” she admits.
“Oh, me too … but wow, Mom!” I say. “This is really exciting!”
I try not to get my hopes up … but it's too late. I'm already buoyant. Even if this program doesn't work out, it's still a sign of progress. And the fact that Willie is going to visit tells me that he has options, that he's moving forward.
After Mom and I hang up, I go to my desk. It's time to reply to Willie's letter, and I know just the stationary to use. After I gave a keynote presentation at a sibling conference, I received cards decorated by artists from a disability support program. The colors are brilliant, swirling together. I scan the surrealistic scene, spotting a tree, two suns, and stars. And I think to myself: Willie might do something like this soon. What a wonderful world.
Theory of Mind (ToM) has been described as "...being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action.” In other words, people on the autism spectrum often do not understand that other people don’t necessarily perceive the world the way they do. This “mind blindness” can often interfere with successful interpersonal interactions. Case in point: Recently, it came to my attention that there was a young gentleman with significant ToM deficits who created quite a bit of drama when faced with in-the-moment uncertainty. There are many facets to this story, but suffice it to say that in the multiple problem-solving discussions that followed the initial incident, it was ToM that kept rising to the surface as the most insurmountable of obstacles.
It all started with a stomachache. The young man in question was at his Career Education work placement, and he had a stomachache. He was also feeling dizzy, lightheaded and like he was going to faint in some retellings of the story, but the stomachache was the one consistently reported symptom. This student—let’s call him Brian—was given an assignment at work about which he had some confusion, and proceeded to get himself pretty worked up with anxiety over this confusion and the stomachache. He separated himself from the group he was assigned to, reported back to his job coach at a predetermined location, and was given an alternate assignment in the interest of time. All the while, he knew he had the stomachache. HE knew he was feeling very anxious and dizzy and even a bit overwhelmed. If this individual had typically developing ToM abilities, the next logical step would be to tell his job coach so the job coach would also know and then be able to respond appropriately. In this situation, “appropriately” would have meant notifying the job coach’s supervisor (me) and bringing the student back to school for medical attention via the school nurse. This procedure is so much an ingrained part of the routine that we don’t even have to think about “what-to-do-if …” Thankfully, that is the reality, because Brian did not tell his job coach, or anyone else, that he had a stomachache or was feeling ill in any way.
Brian came to school the next day, and in the context of discussing an unrelated incident with school personnel, made a report that he had been sick at work. He explained, in what was described as a highly-charged emotional state, that he had been sick and his job coach had not done anything. This would be grounds for big trouble in my little corner of the world. If the reality was that his job coach, who is under my management, had failed to report that this or any student was ill on the job, then we would have disciplinary issues to consider. When our students are working in the community, everything we do needs to be above reproach.
Thankfully, my own ToM deficits (and there are some, most assuredly!) do not extend to the point of my making an assumption that my staff knows the procedures as well as I do. Brian’s assumption that his job coach knew and ignored an illness could have negatively impacted the program and the reputation of my staff member. Brian was convinced that his job coach knew that Brian was sick, even though he acknowledged that he did not tell his job coach about the symptoms he’d been experiencing. Others present at the job site concurred that no one knew of the illness. Yet Brian believed that his job coach—as well as his classmates, other teachers, and then family members—were aware of the situation.
When my son was younger, and we ran a home-based ABA/DTT program which progressed to the point of perspective-taking, we taught Theory of Mind with the idea that this was a critical piece of the developmental puzzle we were trying to put together. Even then, though, I don’t think I could have done an adequate job of seeing how far-reaching the consequences could be for deficient ToM skills. When I look back on the series of rather unfortunate events chronicled here, I see clearly how this could have had a disastrous end. I suppose the “moral of the story,” if there needs to be one, is that all of us—on the spectrum or not—need to recognize the importance of thinking before we speak, and recognizing that not everyone knows what we know, even if we think that what we know is obvious.
We finally have the answer to what Reilly will be doing in the fall. It isn’t exactly what we hoped for, but it’s pretty close, and probably for the best.
We had applied to Mitchell College, a small, four-year school in Connecticut that has a sports management major and a great learning disabilities support program. Mitchell’s admissions committee wasn’t completely convinced that Reilly was ready for a full course load, so they have accepted him into a one-year bridge program that should prepare him better for the rigors of college. If he does well, they might accept him into the college for spring semester. Or he might stay in the Thames Academy program for the entire year and hope to get into the college the following year.
He’s happy, we’re happy, and we’re hoping that this next year will tell us more about whether a bachelor’s degree is in reach for Reilly.
The NYIT Vocational Independence Program has served Reilly pretty well for the last two years. But pursuing academics meant traveling to the school’s other campus for college-credit classes. And the communication between the college professors and Reilly’s academic advisor at VIP seemed to be lacking. He did not do well in the business management class he took this last semester, at least partly because he didn’t get (nor did he seek, apparently) the academic supports he needed. He did well in his other credit class, so we’re still hopeful that college is possible.
Thames Academy is located on the edge of the Mitchell campus, in a big, old Victorian house. Dorm rooms are on the upper floors, with classrooms on the main floor. The program is for students who need more help to become college-ready. The students take a variety of classes, including college-credit Sociology and Humanities courses designed to improve writing skills, a college Math class and non-credit classes “to redefine who they are and where they see themselves,” along with improving executive function, according to the Thames website.
Meals and extracurriculars are on the Mitchell campus. And Reilly will have a roommate for the first time. I started to worry about that, but then I reminded myself that living with a roommate is a skill he needs to learn.
Reilly seems to be ready for the new challenge. In a Facebook post, he said he would miss his girlfriend, Ashley, and all his friends at NYIT. He promised to visit them and concluded with “Time to start a new journey in life.” They all wished him well. Ashley is sad, but supportive. Reilly hasn’t been very forthcoming about their discussions, but says they plan to have a long-distance relationship. He’s asked if Ashley can come to our house for a visit this summer. We’ll try to work that out.
It’s an exciting time of transition for our family. Reilly’s sister, Brigid, graduated from college last week, and begins her “new journey in life” as well. Reilly’s brother, Ben, is planning a cross-country move to pursue a music career. For this week, we are all together, celebrating these milestones with a family beach vacation. How many more of these will we get, as our children scatter to where life takes them?
So, today, we toast the next phase of everyone’s journey. Godspeed!
Cameron is about to graduate from high school. I have to let that sink in for just a bit … In a few short weeks, Cameron will receive a high school diploma. Hip Hip Hooray … right? Why don’t I feel like celebrating? I know I need to get a party invitation ready to email to the masses, but for some reason, I’m not quite excited enough about the event to start the planning process. I was on a photo-sharing website the other day, and saw ads for graduation announcement photo cards. Crap. That would’ve been a good idea to send out. I guess it’s not too late. Why didn’t I think about this before now? Why am I so reluctant to embrace this milestone event? Cameron has been accepted into his first choice of postsecondary programs, he will be living away from home come September, and he is well on his way towards the next phase in life. Yet, it’s not the melancholy of sending my firstborn off to “college” that has me reluctant to celebrate his high school commencement. I guess I feel that Cameron’s graduation isn’t really a true representation of achievement.
Don’t get me wrong. It’s not that I’m not proud of Cameron. He is an amazing young man with great determination to do what it takes to achieve his dream of owning a pizza restaurant one day. But has his education, which earned him a diploma, been sufficient? I recently had dinner with a group of moms from Cameron’s school and the topic of grades came up. It was generally agreed that the grading system at the school was meaningless. Most students receive A’s across the board, and therefore grades can’t possibly be representative of ability. But if your kid comes home with straight A’s, is it something to complain about? Deep down, I realize that it is a complaint-worthy offense, but I never raised the issue. But now, because I never raised the issue, I’m left with nothing but standardized test scores as the representation of Cameron’s strengths and deficits. No matter how thorough and extensive, testing can never be a true representation of a student’s abilities in a classroom. So now what do I do?
As Cameron begins his postsecondary programing this fall, I vow to stay on my toes and look for measurable improvements in areas that need improvement. Regardless of what the program reports happens in the classroom, if I don’t see improvement at home, it’s not an improvement. It will have to be a vigilant effort on my part, because when someone tells me my kid is doing well, I tend to readily agree with them. However, there are certain things about Cameron that will get in the way of his employability. He needs help formulating strategies to overcome these hurdles, aside from mom’s constant nagging. When I see these types of improvements happening with Cameron, I’m sure then I’ll feel like celebrating. As for the upcoming graduation celebration, I suppose I can look at it as celebrating the things to come.
One of the more talked-about topics we have in our autism community today is that of wandering. This escalated last fall because of the wandering case of Avonte Oquendo, a 14-year-old boy with autism from Queens who eloped from his Long Island City school. After months of searching, Avonte’s body was found in the East River. I attended a press conference held by Senator Schumer (D, NY) later that month with Avonte’s mother. It was one of the saddest events I had ever attended. So my heart dropped when last weekend we had another 14-year-old boy with autism, Eliceo Cortez from Brooklyn, New York, go missing. After a friend of mine saw the story on Fox 5 NY Facebook Page this weekend he asked me a question that changed the way I’ve looked at wandering. He asked, “Do you think because the boy looks like an adult he’ll receive the same attention as Avonte did?”
It was a question that I didn’t really have a strong opinion on up to that point. Two boys, both from the New York area, both 14, looked nothing alike to me although they were the same age. Avonte, who was 5’3 and 118 pounds, looked like a boy to me while Eliceo was 6’1 and 135 pounds and to me looked like he could very well be 18 years of age and a young adult. Fortunately, Eliceo was found in three days. But I began to consider whether we pay enough attention to adults who elope.
We need to make sure we don’t see wandering as a problem only in children. There was an opinion piece on Philly.com entitled “The Death No One Cares About” in which the author discusses a 37-year-old woman with autism from West Philadelphia named Christina Sankey who wandered away. Christina had wandered inside a Macy’s department store in her area and the following day her body was found a few miles away. The author suggests that Sankey’s story didn’t receive much public attention because of her age and socioeconomic status.
It is important for us to remember that wandering among people with autism happens across lifespan. Even though Sankey was 37, her intellectual functioning was that of someone much younger. Adults on the spectrum who elope are at risk—whether they have intellectual disability or not—due to challenges in self-awareness and in recognizing dangerous situations.
I’m passionate about this issue because I hope that one day our community doesn’t have to keep talking about the need for attention to be paid to autistic individuals who wander. Autism is a spectrum disorder where everyone has different ranges of ability. If someone with autism is missing, no matter the age, attention must be paid.
A study by the Interactive Autism Network reported that 49% of children with autism wander from a safe environment. Some will outgrow this tendency, but many will not. We need to work with law enforcement agencies on expanding the alert systems nationwide and examine how to best use available technology to help us track lost individuals.
As a society, it is our obligation to help keep individuals with special needs safe. Addressing the issue of wandering in people with autism may help make needless deaths like Avonte’s a thing of the past.
Last week, I received this poignant letter from a fellow sibling:
I am now a week away from starting a job as a classroom paraprofessional [teaching special education] …. I am grateful and super nervous. It has made me very happy to connect with students and build them up when they learn something new. As you may remember, my younger sibling has autism …. I am nervous that I am not as understanding a sister as I should have always been. I am anxious of being unhelpful or even impatient with students.
But actually … that [has] never happened. When situations became difficult with a student, I was pleasantly surprised to see how naturally my good problem-solving skills kicked in. When I started to notice this, for the first time I felt confident about this professional space. It felt "off" to see I could be more patient with students than with my sibling. Did you have [similarly] conflicted feelings … ?
I also question whether [my] individual-based mindset is the right one for figuring out if I can become a teacher. It concerns me that I will not be objective, realistic, or in tune with how I am really doing my job … whether I am fitting into the space as a classroom leader. I am nervous about MISSING important signs …. Do you have suggestions about how to strike a balance?”
Oh, yes … I can definitely relate to your description of work relationships being easier to manage than family relationships. Fellow siblings I've met have shared similar stories, so know this: We are not alone.
As you know, living with other adults with disabilities did significantly improve my relationship with Willie. It gave me a different perspective, and that is priceless. For years I struggled with taking my brother's behaviors personally. But in caring for friends with special needs, I learned to look for the reasons behind certain behaviors, to be more objective. I also learned that everyone is doing the best they can. And with those lessons in mind, I could see Willie in a new light. I couldn't believe how capable he was. He could feed himself! Dress himself! Bathe himself! Since I spent my days caring for people who needed more help than he did, I could appreciate his independence anew.
Yes, I did feel guilty about not figuring all this out earlier. But then I realized that our family relationships are pretty much always harder than professional ones, because the roots go so much deeper. It's like Anne Lamott writes in “Traveling Mercies,” "I tell you, families are definitely the training ground for forgiveness …. It’s like learning to drive on an old car with a tricky transmission: if you can master shifting gears on that, you can learn to drive anything.” (I learned to drive stick on an old truck this past year, so that description seems spot-on.)
I know what you mean about the fear of missing important signs, too. I know the debilitating fear of not knowing whether the next step is the “right” one. I have been there; in fact, I'm there every day. All you can do, though, is make the best choice you can given what's in front of you now. You can't know what life will look like 10 steps down the line.
That said, you can ask for input and seek feedback from trusted colleagues … but I'd guess that the real question isn't whether or not you're capable. It seems like the real question is, What if I choose “wrong”? Well, then you'll adjust and choose something different. Perfectionists like us struggle with that, but it really is okay to change your mind. That said, if you love to teach, then the odds are that you've made a good choice.
In fact, I'd feel anxious if you weren't a little nervous about your new job. it is a big responsibility to teach. But the fact that you're asking questions indicates that you're the kind of person who puts the welfare of her students first … the kind of person who could make a great teacher. Good luck!
It is graduation season, and I would like to offer you my congratulations on graduating from whatever educational institution you have been a part of. Your path to this important milestone may have been different from and possibly more difficult to navigate than others, but I am sure you are proud to have made it. Your cap and gown and the diploma you receive signify this accomplishment, and I hope you take some time to enjoy it just as I did when I graduated.
However, I believe the learning process does not stop at graduation. It has been my own experience as a person on the spectrum that I have to work harder and for longer periods of time to accomplish my goals. Thus, I have found it to be a constant need to learn new things, even everyday tasks. Like me, you will more than likely find new roles to fill, challenges to face, boons to delight in, and missteps to correct and soothe. You may even find, as I have, that you are still very curious about the world and may wish to discover new things that add greater meaning to your everyday life.
It has been two years since my own college graduation, and even though I am a working writer, I still have the desire to learn all I can about a variety of subjects. I continue to practice and take on new daily life skills and remain active with many sports and social activities, but beyond that, I also want to pursue a variety of intellectual journeys similar to those I encountered while in college. Many of my college courses were very rewarding and held my interest in ways nothing else had ever done before.
So, in an effort to continue to satisfy this need, I have begun taking home lecture courses. They are similar to my old college courses in a few respects: They consist primarily of lectures and each comes with a guidebook filled with supplemental information on the subject matter covered. One crucial difference, though, is that these courses do not come with homework or lingering deadlines; I really enjoy learning and mental stimulation, but I can do without the pressure of ticking clocks!
Thus far, I have worked my way through courses relating to literature, language composition, philosophical history, and astronomy. All have brought to my attention fascinating information and facts I was not aware of before or now see in a new light. In fact, the course regarding the art of constructing sentences has, I feel, helped me to become a better writer. I have implemented some of the techniques I learned from this course in my recent written works, and I believe I have been able to convey deeper and more precise reflections of my thoughts.
I hope that as you move on to the next phases of your life, you will find rewarding opportunities, a broader understanding of your place in the world, and good friends with which to share all these new adventures. Go ahead, keep working hard, keep trying, and find out what the world has to offer you. Graduation is just the first step.
It’s 51 degrees out. Which means my 21-year-old son Mickey is wearing shorts and sandals.
“It’s too cold!” I protest.
“But it’s May.”
I get it. He hates socks. Loathes sneakers. Long sleeves drive him crazy. If we let him, he’d leave the house wearing shorts and sandals in January, and probably without a coat. Winter weather doesn’t deter him. Which has turned me into the kind of mother who says, “I’m cold so you have to wear a sweater.”
I remember battling my own mother, who forced me to wear skirts with scratchy crinolines (yes, I’m that old.) Is that what it’s like for Mickey when we ask him to wear clothes that itch or cling or rub, or bother him in ways we don’t even know, because he can’t parse the particulars of his discomfort? “Because I hate it,” he says.
I know how miserable I feel wearing Spanx. Is that how he feels about dress pants with a belt? Loafers? A blazer? Worst of all—a dreaded tie? “I want regular clothes,” he says.
I respect his sensory issues. I want to honor his right to choose what he wears. Unfortunately, there are just some circumstances where you can’t wear what you want, and it’s not only due to weather. Sometimes respecting his right to choose smacks up against the need to dress appropriately, whether it’s a volunteer job, visiting a house of worship, going on an interview, or hiking with his day hab group. It’s dangerous to climb a mountain in sandals, and disrespectful to go to synagogue in a t-shirt and shorts.
“Just for today,” he pleads. “I’ll be careful.”
Why am I making a big deal about shorts and sandals? Am I worried someone will say, “How can you let him go out that way?” and judge me as a bad parent? Yes, it’s chilly, but he’s not going to die of exposure if he goes out underdressed for this weather. Maybe if he does realize it’s cold or wet and he’s not as comfortable as he thought he’d be, he will learn from it, and next time wear something more suitable.
I try not to intervene with his choices unless health or safety is at stake. I may say, “What do you think your friends will be wearing today?” or “I don’t think those colors match,” but I won’t stop him if he’s really set on the combination. It’s a fine line between encouraging self-expression, and letting him leave the house wearing clothes that may make him an object of teasing or ridicule.
Haven’t I made similarly inappropriate choices? Worn high heels out of vanity, when I should have opted for more comfortable or practical footwear? Shivered in a thin summer dress I wanted to show off, instead of wearing something more sensible?
Mickey is a young adult now. He is chafing against our restraints. His struggle to pull away from us is developmentally appropriate. The business of adolescence and young adulthood is to separate from your parents, to find your own way in the world. Part of growing up for anyone is learning to make—and live with—one’s own choices.
He starts out the door in shorts and sandals, then goes back to his room. When he emerges, I see he has added a baseball cap and sunglasses. “I’m going to sunbathe today,” he says.
“Pack a sweatshirt,” I say. He doesn’t.
“I look handsome,” he says.
“Very cool,” I agree. And resolve to say nothing more.
Because it’s his choice to make. This isn’t about autism.
It’s about autonomy.
First published October 24, 2011.I just finished reading the phenomenal debut novel by Tom Rachman entitled The Imperfectionists. I found myself particularly drawn to the following quote by character Oliver Ott: “I mean, we all know I don’t understand this sort of thing. The rest of the family does. But I seem to be missing it somehow. Missing the chromosome for it. The cleverness gene. I’m faulty. So here’s my question, Schop: can I be blamed for my defects? I mean, are my faults my fault?” While Oliver is never identified by any diagnosis, he clearly struggles with social anxiety. His only friend is his basset hound, Schopenhauer, and Oliver doesn’t understanding why he struggles as he does, nor can he convey his anxiety when the situation demands it. While experiencing his character development in the novel, I was reminded of the new IEP goal I requested for Cameron recently. I strongly believe that in order for Cameron to have any chance at independence, he needs to understand and verbalize the challenges he faces because of his disabilities. When you think about it, knowing one’s strengths and weaknesses is crucial to anyone’s success. It therefore surprised me that my request seemed to be perceived as a unique goal to include in an IEP. I also asked Cameron’s psychologist to help Cameron formulate a way to communicate his challenges. The psychologist was going to ask for input from colleagues on a good approach. Why is it such an extraordinary request that Cameron understand himself? Someone going to Weight Watchers gets bombarded with information on the causes of obesity and how it’s combated. An alcoholic joining Alcoholics Anonymous quickly learns character traits he has that contribute to alcoholism. So why aren’t people with learning disabilities automatically taught the same sort of self-awareness? Perhaps, and don’t hate me for saying this, but perhaps in our efforts to be inclusive with this population, we have overlooked the need for the population to understand what makes them different. Perhaps we’ve tried so hard to make them just like everyone else; we’ve forgotten to bring their attention to their unavoidable differences. Or maybe we’re essentially saying, “You have autism, so there’s no way you can understand what it means to have autism.” I hope that Cameron will learn to understand that his brain works differently than most people’s. And as he becomes aware of his differences, I want to assure him his faults are not his fault, as Oliver pondered. Let me be clear that I see self-awareness as a means of Cameron asking for support, but it is not a crutch. In other words, Cameron can’t let “I have autism” become an excuse for not learning nor for avoiding self-management. But, maybe if he reaches that IEP goal, Cameron will someday be able to say, “I’m sorry but I have language issues. Would you please speak more slowly?” At the very least, I hope Cameron will learn to ask for help and not be embarrassed by needing it.
Cody continues to do well in his day program. Staff members are able to keep him engaged in activities throughout the entire day, which is commendable as no other provider has ever achieved that. And now they have ramped up his community involvement. Cody is now volunteering his time by helping the staff members deliver meals to homebound residents in the area. And he loves it.
Cody started by riding with a staff member and one or two other clients who were interested in helping with this kind of work. Cody loves car rides so this was right up his alley. Their route is pre-planned and they go to the same houses each time. Even though he didn’t get out of the car at first, it still gave him a chance to become familiar with the names of the streets and which house was on each street. And little by little his enthusiasm began to blossom. After several weeks he began going with the staff to the residents’ doors.
At first he wouldn’t say much to the residents, but then he began to greet them. Short greetings then turned into short conversations. Soon he was actually carrying the tote and helping staff take the meals out to give to the residents.
Staff members have been thrilled about the progress Cody has been making. He is learning the value of giving to the community and he beams with pride because he knows he has had a part in helping someone else.
There have been a few hurdles to overcome however.
I previously mentioned that Cody doesn’t really like small dogs that bark a lot. In spite of their small size they tend to be very loud. The noise is just too overwhelming for Cody and has often sends him into panic mode. As it happens, one of the residents to whom he delivers meals happens to have just such a dog.
As Cody and a staff member approached the door on a recent visit, the resident was there waiting for them and so was her dog. It was yipping and yapping up a storm. This caused Cody to bear hug the staff member and then he began turning her in circles while he shouted, “Oh no, no, no, no, no, no!”
The staff member was caught off guard by Cody’s response to the animal for a few seconds but then began reassuring him that things were OK. The resident was a bit shocked as well at seeing a full grown young man become so unnerved by her pint-sized pooch. But finally she picked the dog up and took it to another room and Cody was able to reclaim his composure.
On another occasion a staff member decided to take Cody and two of the other clients who happen to be very chatty young ladies. One of the girls likes to ask questions about everything and the other likes to talk non-stop. After listening to them for 15 minutes or so it was just too much for Cody and he began to have a meltdown.
Cody started banging his head on the passenger side window of the car. The staff member who was driving pulled the car to the side of the street and quickly but calmly redirected all three clients by letting them know they were having unsafe behaviors. They were told that if they could not be safe then they all would have to return to the facility and other clients would be allowed to make the deliveries. That was pretty much all it took to get the situation under control.
Yes, there are some glitches to be worked out but I’m still excited that Cody is taking part in this activity. It gives him lots of practice in appropriate interaction with people with whom he will need to have a cordial, yet professional attitude. It is helping him develop skills that perhaps one day he will be able to use in gainful employment. But most of all it is teaching him what it is to be charitable. I like to tell him how proud I am of him for his charitable work. Because it means he is giving back to the same community that has given so much to him.
When my husband hands me the envelope, I smile as soon as I see it. My brother Willie's printing is distinctive; I know it at a glance, and I'm not surprised. Willie's latest IEP includes a goal to write letters to faraway family members, and as such, my envelope includes two notes. The letters are much the same, with few variations. The composite text reads as follows:
I had a good day at [my day program]. I did x-rays, math word search, and word scrambler. I ate lunch with all of my friends.
PS—Caroline, it's time to go to California next week, in San Diego for my birthday and [two family friends'] wedding.
On the surface, his letters are simple and straightforward. Yet I'm sure that my fellow family members and siblings know exactly which line brings sudden tears to my eyes: I ate lunch with all my friends.
It's hard to explain exactly why this sentence moves me to tears, but it had something to do with the profound ordinariness of the words. I ate lunch with all my friends is a typical statement for most young adults, one that many families hear and take for granted. But for those of us with “leaving normal” lives, it strikes straight to the heart.
Willie has friends with whom to eat lunch. To me, that constitutes a miracle. After more than a decade of behavioral struggles, Willie has found some degree of stability and equilibrium. He participates in his day program on weekdays, and on nights and weekends he has a busier social calendar than I do, complete with bowling, weightlifting, piano lessons, and Special Olympics. Yes, he still has meltdowns. No, we don't know exactly what the future holds. Even so, reading my brother's matter-of-fact words is deeply reassuring. I ate lunch with all my friends. I've never heard that from my brother before.
Willie's friendships may not look the same as mine, but that doesn't mean that they're less real or less valuable. My brother has his own way of making connections; that is, by engaging in activities side-by-side. If I want to connect with my brother, I won't start by asking him a dozen questions. Instead, I'll sit down and watch a video with him, ski down a mountain by his side, or accompany him on a walk with the family dog, Chevy. Conversations with Willie don't last long—he'll run off to play piano or watch videos once you've gone beyond a few sentences—and that's tough for someone who relies on verbal language as much as I do. So while I enjoy spending quality time with Willie, it can be difficult for me to “translate” that into a sense of connectedness. So when I opened his letters, I couldn't help but feel amazed; my brother was speaking to me in “my language” at last.
What can I say? I'm a writer. The quickest way to my heart is through words. In fact, my favorite dreams are what I call “reading dreams.” In these dreams, I am reading an entire book, one that doesn't exist in the waking world. The process is almost indescribably joyful; I never want to stop, and as my eyes scan the pages, I keep thinking: This is amazing! This book is so great! Reading a dream-book is like reading all of my real-life favorites at once. Upon waking, however, I can't remember a thing about the content, only how the book made me feel: blessed beyond measure.
On one hand, Willie's letters are nothing like the dream-books I adore. They aren't detailed or complex; they aren't literary masterpieces. Yet on the other hand, Willie's words leave me feeling just like I feel in those dreams: full to overflowing, reluctant to wake.
With that in mind, I pick up a pen to write my brother back. I choose a greeting card with a bevy of starfish on the front. It's perfect for Willie, who's probably exploring Sea World with our parents as I scribble. My sentences are simple; my syntax is basic. Nevertheless, it feels like the most important work I could possibly do.
With any job, you have your good days and your bad days. For me as a manager, a bad day is when a lot of staff has to have off and the day becomes very stressful. Rather than just sit back and let things fall apart, however, as a manager you have to step back into the role of a counselor to not only help yourself, but to help the individuals maintain their daily lives and work habits. In doing this, it reminds me why I love my job and why I have been working with adults with autism for a few years now.
Just the other day, I had to be the counselor for the day with one of my individuals because no one else was available to work with him. It just happens that this individual is the grandson of the company’s founder. His job is to refill the bus schedules at various subway stops in the area and to clean the racks that hold the schedules. Before he goes and refills the schedules, this young man has to count out 30 schedules for each bus route to be placed in the racks. Instead of having him sit at my desk with nothing to do, I tried to find ways to make the job more of challenge for him. For example, I would only count out 20 schedules, hand them to him and ask him if we need more or less schedules for the day.
The schedules have to be in numerical order on the racks, so sometimes I would hand the individual a schedule out of sequence to see where he would place it. It would just amaze me that no matter how I tried to make the job a challenge, the individual would not miss a beat and would place everything where it needed to be. He would even greet people as they came up to the rack to get a schedule. The station managers came over to say hi to the individual and note what a great job he was doing, and how much his work is making their jobs easier. Upon returning to the Vocational building, the individual wanted to get ready for the next day rather than getting ready to go home.
As a manager, sometimes I get lost in paperwork or become stressed over policies with the staff. Sometimes it is good to not be the manager for a day and actually go to work with the individuals to remind myself why I choose to be in this business and why I work with this population. I think every manager in any job should take a day, step back, and work in the shoes of their staff members. It might just give those managers a better understanding of why they work where they work and why they love what they do for a living.
I was going to write about a disturbing case here in the Washington, D.C. suburbs, involving the arrest of three teenage girls for tormenting and assaulting a high school boy with autism. But then I saw Reilly post this on Facebook:
“It will be a long afternoon. Making a peanut butter pie during Banking and Budgeting for my food class final, then getting ready for the 4:00 p.m. Romeo and Juliet production. At 8:00 p.m. I will be watching the NFL draft. It will be interesting to see where Ha Ha goes. : )”
So much to work with there! First, I’m not sure why he was making pie for his food class final during his Banking and Budgeting class. Probably best not to ask. Hope it all worked out. But “Romeo and Juliet” I had to ask about.
Reilly’s literature class staged the production, and Reilly was Romeo; his girlfriend, Ashley, was Juliet, of course. It might not be a high honor—apparently none of the boys in the class wanted the part, so Reilly volunteered.
The night before the play, he posted at 11:15 pm: “Damn, this play just needs to be over. LOL”
“Break a leg, buddy!” I commented. He said, “We are all hoping it gets over fast. As it turns out, we don’t work well together in our nighttime basement lounge practices as the show gets closer.”
To which his sister, Brigid, the theater education major, replied: “Welcome to all acting, ever, Reilly. I think two people cried at our last senior rehearsal this week … It stresses everybody out, but the show comes together in the end.”
Apparently it did. We didn’t get to see the show, but Reilly reported it went well, and the literature teacher said they were the first group of students to memorize all their lines so well they didn’t need the script for the performance. Someone shot video, so hopefully we will get to see the recording.
Reilly’s excitement over the play was soon eclipsed by his excitement over … the NFL draft. That’s where Ha Ha comes in. According to Reilly’s stream of Facebook posts about the draft, Ha Ha is a college player, a safety, named Ha’Sean Clinton-Dix, who Reilly had hoped would still be available when the Redskins finally got a pick. But then, Reilly posted: “No more Ha Ha.” He had gone to another team.
Reilly had to miss the second night of the draft, when the Redskins got to pick, because he was at a film festival for his Media Applications class. But he managed to stay on top of the draft anyway, posting updates periodically. Because of Reilly, I now know that the Redskins picked up an OLB, an OT and a G in the second round, though I have no idea what positions those are. I assume they are positions. Reilly seemed pleased with the picks.
So, while I felt awful about the boy in suburban Maryland, who was tormented for months by three girls he thought were his friends, culminating in the arrest of the girls for assault, Reilly’s good news and happiness over the NFL draft (like Christmas to him), brought me back to how much I have to be grateful for. Yes, it can be a cruel world at times for young people on the spectrum, and there will surely be disappointments and rough patches in Reilly’s future. But for now, things are pretty darn good. He’s happy and hopeful about his future.
We pick him up this week, at the end of his second year away at school. This year has gone quite well (OK, he might not pass his business management class, but it could be worse). While we still don’t know what the next school year will bring, we’re pretty sure we’ve prepared him as best we can for what comes next.
Romeo sums up my feelings thusly:
My bounty is as boundless as the sea,
My love as deep; the more I give to thee,
The more I have, for both are infinite.
Trying to figure out the value of a postsecondary program is one of the toughest things I’ve ever done. Before I invest in a program, I want to know its track record. I want outcomes, documented in neat and tidy columns. But of course no one will guarantee outcomes, will they? After all, every student is unique, so it may be asking too much to expect unified outcomes for all. When I consider the outcomes I want for Cameron, I find myself wondering how those outcomes might be measured at the conclusion of programming. How do you measure the value of learning to live outside the protective cover of a mother bird’s wing? Will the experience enable Cameron to earn more income as he finds permanent employment? Is there a way to measure projected earning potential before completing a program versus after completion? Even if there are “employment” statistics on a program, what is the definition of “employment”? Would Cameron’s eight hours per week of earning minimum wage earn him a check in the “employed” box?
I have resigned myself to the fact that I’m going to have to rely on mother’s instinct when it comes to assessing the value of a program. My instincts tell me that Cameron will be a success story wherever he winds up this fall. When Cameron exits the postsecondary phase of his education, I’d say it’s a safe bet that the program will view Cameron as an asset in their “look what our students are doing now” marketing data. But will the feeling be mutual? Will it be worth it in the end? If Cameron is better prepared to live on his own—even if he can’t financially swing it—I’d call it a success. If Cameron can find full-time employment and quickly earn more than minimum wage, I’d call it a success. If I were to look for a program that had data supporting that level of outcome for the majority of their students, I don’t think I’d be successful in my search. Outcomes don’t really matter except when they are the outcomes for Cameron. Unfortunately, outcomes can’t be measured until the “end,” and Santa has not delivered that crystal ball I keep asking for year after year. So we’re back to mother’s instinct being the best judge of value.
It feels odd to suddenly relinquish my grip on the “Show me the outcomes!” banner I’ve been waving for so many years. I’m not giving up on outcomes all together. I just realize that expectations will change for each individual. Even if there were verifiable outcomes available for every program out there, there’s no guarantee that the outcome will be success for everyone. It would be nice if that were the case, but it would also be nice if Santa would finally leave me that crystal ball. I guess a mother’s instinct coupled with a program run by qualified, caring individuals is the next best thing.
Last week I attended the National Speaker Associations (NSA) Mega Publishing Lab Conference in Queens, New York. About four years ago I got involved with NSA after they awarded me the Earl Nightingale Scholarship, which providing financial aid in pursuing my Master’s degree from Seton Hall University. Ever since I’ve stayed involved as a student member and am now a full-time member.
This conference was a real eye-opener to me. There were so many highlights. On the first day I was introduced to many established authors who have had their books sell millions of copies worldwide. On the second day I got to pitch my next book to a publishing group and on the third day I got to learn how to market my book.
On the second day of the conference, I had an interesting experience during a small group event. Most of the people in my group were discussing publishing books focused on the topics of real estate and business. When it was my turn to introduce myself and the topic of my book, I mentioned writing a book on autism and everyone seemed intrigued.
I continued discussing my story and what I was doing in speaking and everyone seemed so receptive to it. After my introduction, many people across the table told me that I had great potential for the future. They told me I shouldn’t only focus on writing books but I should become a world-renowned speaker for Special Education schools and programs throughout the country.
I was dumbfounded by this feedback. I didn’t expect people with so much experience to give me these words of encouragement. I was a newcomer but while listening to the comments, I was reminded of how far I’ve come and how much further I have the chance to go to in the future.
This made me think about so many other adults with autism and gave me the biggest smile on my face. There are so many gifted individuals out there that I know can have similar outcomes.
I almost thought it was fate for all this to be happening when after the conference was over on Saturday I went to Autismspeaks.org that night and saw a news item entitled, “US Employment Outlook Appears Brighter.” I read the article and realized that the unemployment rate in the United States had fallen to 6.3%, the lowest level since September 2008 according to the US Department of Labor.
This has made me optimistic for our community moving forward. I hope that those individuals in our community who have talents are given these positive reinforcements so they can achieve their dreams, especially when it comes to employment. There is still a majority of adults with autism out there who are unemployed and I hope we can change that in the very near future.
I'm looking out the window, admiring the glories of spring. In the stillness, a convicting inner voice comes through: Honey, you haven't been paying attention. All this beauty surrounds you, and lately, you aren't pausing long enough to take it in. The voice is right. I've been moving through my days on autopilot, focused on efficiency rather than relationship. I haven't been stopping to smell the roses, literally or metaphorically.
Willie's 27th birthday is coming up this week, and my 29th is around the corner. But wasn't Willie's 26th birthday just moments ago? Time isn't going to slow its relentless pace; I'm the one who needs to change. It's time to start living life rather than just “getting through” it. Thankfully, I've had some wonderful teachers in the art of being present. In my role as a direct-care assistant for adults with intellectual and developmental disabilities at L'Arche, I learned a great deal about slowing down. While on routine, I was always tempted to check off tasks quickly. I had to set limits on that desire for efficiency, because it didn't promote independence and growth for my housemates.
For example, my friend Theresa* moves at her own pace. She peels her hard-boiled eggs with precise, deliberate movements. On harried mornings, you can peel the egg for her and shorten your routine. But you don't want to do that unless it's necessary. Why not? Because it matters to Theresa that she peels her own egg. It takes more time, yes, but it's important to her. It doesn't matter if I can do it faster or “better” … because it isn't mine to do. At L'Arche, I learned to respect what didn't belong to me. Recalling this, I wonder: What if I offered myself the same respect I offered my friends? What if I could honor my own processes, the time it takes me to take a shower or eat a meal without rushing?
Working with Theresa also taught me that, while I couldn't always speed up our tasks, I could make them more fun. When I started helping Theresa with her twice-daily mouthwash, the 30 seconds she was meant to spend swishing felt like an eternity. Each day, I dreaded the countdown. (Several folks at L'Arche use mouthwash twice per day, so assistants count to 30 a lot.) Then one day, when I was in a buoyant mood, I sang the numbers. Theresa started swaying her hips; she loves to dance. In a flash, I saw a way to break up the monotony of mouth washing. I thought, We'll always have to spend 30 seconds doing this, so why not make it fun?
That day, the “mouthwash dance” was born. From then on, whenever I was on routine, I'd say, “And now, it's time for … the mouthwash dance!” I'd wave my arms and stomp my feet, and Theresa would grin. For 30 seconds, we'd both go wild. That dance break became a treasured point of connection. (And to think I used to dread those 30 seconds!) This spontaneous innovation has had staying power; years later, assistants still teach “the mouthwash dance” as part of orientation. It may not last forever, and that's perfectly fine. The idea wasn't to start a tradition; instead, the point was to bring delight into an existing requirement. Willie knows this lesson well. I smile as I remember him coming downstairs with his shoes on the wrong feet, his shirt on backwards. Willie loves to play pranks; he reminds me of the simple joys of being silly.
In that light, I consider my current routine, wondering: What part of my day do I dread, and how could I make it fun? Washing dishes comes to mind; it only takes a minute, but I don't enjoy it. So what if I sang as I scrubbed? Today, I know what song I'd choose: Ray LaMontagne's “You Are The Best Thing.” Theresa loves that song. I picture her dancing, and a group of L'Arche assistants--myself included—joining in. We're letting loose, staying in the moment, singing words that are simple and true: ou are the best thing/That ever happened to me.
In a recent column, I mentioned a presentation concerning Vision Therapy which was conducted at a meeting of my local Special Education Parent Teacher Student Association (SEPTSA) group. I thought the procedures and techniques that were outlined were quite remarkable and could be of assistance in correcting my own visual processing problems. Since the presentation, I have been assessed for and have started Vision Therapy, and I believe it could lead to some very promising results for me.
As I stated in my previous column, I was already aware of some of my visual processing issues. I have tracking and depth perception problems, but there is a detail that came to light during my assessment that was, quite frankly, surprising. It was found through the testing that my brain has been suppressing my right eye when it becomes overwhelmed with too much visual information and is unable to process it.
I did not actually perceive this shutdown until I began doing some of the exercises and activities my optometrist implemented as part of my therapy. During one exercise using a string with beads attached, I can actually detect when my right eye is fading in and out. When I look at the bead, I should see two lines emanating from the bead. When I only see one line, I know that my right eye is being suppressed. If I see two lines, then I know my brain is properly processing all of the visual information my eye is sending it. By focusing on the beads and moving them up and down the string, my brain is forced to keep both eyes working together. At this time, this exercise places considerable strain on my eyes, and I can only maintain my concentration for a few minutes at a time. I hope this will improve as my therapy continues.
Another exercise that focuses on the suppression of my right eye involves using a unique pair of glasses with red and green colored lenses along with corresponding worksheets. The worksheets have exercises printed in red and green. If my brain is not cooperating with my right eye, I will not be able to see the red print and complete the worksheet. At this time, I have been highly successful with this exercise. I hope my success continues as the worksheets become more complicated.
To further challenge my brain’s ability to make sense of incoming visual data using the colored lenses, my therapist recently introduced a new drill that employs a revolving peg board with red and green shapes on it. I am tasked with placing pegs onto certain red shapes on the board as it rotates. Again, if my brain does not accept my right eye’s signals, then I will not be able to see the red shapes. I have been very successful with this drill as well. The fact that these activities have resulted in consistent success is a sure sign to me that the therapy is working as intended. Other exercises in my therapy plan consist of gross motor, tracking, depth perception, and chalkboard work.
I am now in the midst of my weekly therapy sessions, with more to complete, and have follow-up exercises that I practice at home. The exercises are constantly changing and becoming progressively more challenging. I am, however, very excited to report that I have already begun to notice subtle improvements in my field of vision. As I continue working toward living more independently, I need to be able to clearly understand all that I see, and making sure my visual processing is able to provide me with the proper clarity will be an essential step toward this ultimate goal.
“I regret to inform you,” the email began. I closed my eyes and released a deep sign, my shoulders slumping. It was not the message I had wanted to get that Saturday morning. It wasn’t unexpected; yet, I was still surprised—or was I just terribly disappointed.
“Madison had another sleepless night last night,” the email continued, “getting about 2 ½ hours of sleep.”
I knew what was coming next before I read it. She wouldn’t be invited back again. This was it. After 10 years of attending her precious camp, she would no longer be able to go.
Although I was sad, I understood. It wasn’t good for the other campers, the staff, or really for Madison. She loved it though. In her limited vocabulary, she was able to voice one of her few phrases, “I want camp please.”
It broke my heart to think I would no longer be able to provide that for her.
It’s hard to know when to give up. To put an experience in the past tense category. To let it go.
Was it time? Did I have a choice?
So I investigated. The new medications were working in her residence. “We think she gets excited about camp,” I heard more than once from staff there.
Maybe it was time to move camp to the “wonderful experience” category, close that chapter, and be grateful instead of persistent. Maybe it was time for a change.
“Does she have to go to camp?” one of my girlfriends asked me.
I admitted that she didn’t. Madison’s adult residential placement is a full-time year-round program. In fact, camp attendance was quite a bit of work to orchestrate. But I wanted it for her, especially since she regularly asked for it. And I didn’t want her to lose that capacity to be away from the residence and experience something new.
The next week I had lunch with a fellow Board Member of Pathfinders for Autism who wanted to introduce me to a respite care organization, Maggie’s Light, and its founder. Although he and I had served on the Board together for a few years, we had never talked in depth about our children’s activities or their place on the spectrum. But when I mentioned Madison’s camp experience he laughed—in a kind way. He’d had a similar experience.
“Yes, we had to pick him up,” he said, smiling. “We’d already gone to the beach for the weekend so I had to drive back to get him,” he laughed. “I’d never spent so much time in the car,” he paused to grin once more. “But I understood. Just not a good fit.”
I marveled at the story, but marveled more at the way he told it. Animated. Matter-of-fact. War story style and yet with a light touch.
“But we found another camp. It’s great,” he kept talking. Then I started taking notes. But mostly I kept absorbing his energy and attitude.
I forget how much we can learn from each other.
I forget how much we know about that angst of not knowing what to do—whether to push or give up.
I forget how comforting it can be to be around other parents who struggle, too.
I forget how refreshing laughter can be with we try and fail.
I forget how encouraging it can be to know you are not alone in that quest to find opportunities for our kids.
And I’m grateful. For the lunch. For the laughter. For the chance to learn. And for the small but potent dose of inspiration I received from my fellow Board Member.
Another camp. Another opportunity. Another chapter awaits.
It seems as though the past month has been nothing but worry for me when it comes to Cameron’s future. I feel I’m no closer to resolving what happens to Cameron after graduation next month than I was when I began contemplating this conundrum more than two years ago. I have to resist the urge to punch something when I hear, “Everything will be alright.” (Oh yeah? Right … everything will be alright. But unfortunately, I don’t have the luxury of just sitting around and waiting for that “alright” scenario to drop in my lap!) Thankfully, I’m managing to keep the thought bubbles in their bubbles and my aggression fantasies haven’t manifested themselves in assault and battery charges … yet.
Just when I feared having to remove myself from the weekly column rotation for lack of anything nice to say—after all, “woe is me” does not a column make—I finally have some good news to report: Cameron has been offered a paid internship at the Smithsonian this summer! But wait! There’s more! Cameron asked a date to the prom! Both of these opportunities happened on the same day, and my Facebook status on the subject has been, by far, my most liked status to date.
The internship details are still to be determined. What we know so far is that he will be working with the staff of the All Access Digital Arts Camp, which is the same camp Cameron attended as a participant in 2011. Cameron will be working with a team putting together this summer’s program. I’m thrilled for this opportunity. Cameron promises he’ll be thrilled too, once he finds out the hours he’ll be working. (I have a sneaking suspicion that the start time might have some bearing on his enthusiasm.)
I am equally thrilled about Cameron’s date for the prom. It took some not-so-subtle planting of the idea in his head and some not-so-subtle encouragement, but the not-so-subtle plan worked! It was a tag team effort between my husband and me … hubby with the conversation about dating on the way to pick up Chinese food, me with the follow up a few days later about having a date for his last prom, Cameron with the protest, “I’m just not ready for a relationship.” It took some explaining to make sure Cameron understood the concept of a date. (You don’t have to kiss a girl when you’re on a date.) With some encouragement, he finally committed to asking the girl. The “prom proposal” wasn’t exactly You Tube worthy. (He asked via text message. Is that so bad?) But it all worked out in the end. She said yes.
A few rays of good news can certainly change your perspective. Suddenly “Everything will be alright” doesn’t seem like such a platitude anymore. I’ve noticed a spike in my creativity when thinking about options for Cameron. The good news is there are still options out there. I don’t throw my head on my keyboard in despair (that much) anymore. I’m feeling pretty alright at the moment.
Cody has a new found determination to extend his vocabulary. And over the last couple of months he’s provided us with many teachable moments on which we have been able to capitalize.
When he discovers a new word we supply him with a definition and for the next several days he practices using that word in different ways. For the most part Cody is using appropriate and correctly structured sentences, and his command of the English language is flourishing.
For example, we were driving along one day and I saw a toilet sitting in someone’s front yard. I said, “Why do people do that? It’s so tacky!” Cody repeated the word "tacky" and I explained that it meant that something was said or done in poor taste. For the next couple of days he used “tacky” on numerous occasions and with a few corrections here and there, he gained a sound grasp on what the word meant and how it should be used.
One night Bill came out of the bedroom with his shirt hiked up over his stomach and Cody said, “Just put that shirt down! That looks tacky!” We knew then his perception of the word was fitting. But there have been a few occasions when these moments have brought some intense embarrassment.
One day Cody heard a couple of young men having a triple-X conversation. Cody proceeded to repeat a string of vulgarity that would cause the most hardened of longshoremen to blush.
On our way home I explained to Cody that not only had these men engaged in profanity, but it is also not appropriate to talk about our private body parts or the private body parts of others in a public place. And if we do that in a private setting with another person. it needs to be done in a respectful manner. What those two young men were talking about was downright mean and hurtful to the young lady to whom they were referring and disgusting to the rest of us who heard it.
It’s very evident when Cody is taking something in. He becomes very quiet, locks eyes with the person speaking and sits with his index finger against his temple, contemplating all that has been said to him. And that’s what he did on our drive home.
After a long while of gazing out the window in silence he looked at me and said, “Those guys were mean to that girl!” I affirmed his statement and although Cody has encountered others who have engaged in similar conversation since, he hasn’t repeated it, and in fact makes his dismay known.
We’ve seen this pattern emerging with Cody for quite some time but as of late it seems that his understanding of language has become more complex. Most recently we’ve talked about words such as “explicit,” “thermostatic,” and “absurd.” In our discussion concerning the word “absurd” we explained that it meant something was ridiculous or silly. Again we noticed Cody reflecting upon the definition and then using the word in a sentence of his own. A few days later Bill told Cody that we were going to have roasted porcupine belly for dinner and Cody said to him, “That’s ridiculous! That’s silly! That’s absurd!” While his reply might have been somewhat redundant, it substantiated our belief that his comprehension of the definition was concrete and he had succeeded in utilizing what he had learned as a means of building upon his vocabulary skills.
Neurotypical people who are not around individuals with ASD on a daily basis are sometimes quick to assume that because the expressive language of a person with autism may be garbled in certain circumstances, that they lack receptive language skills. Cody is living proof that this assumption is painfully misguided. Hopefully, with the increase of media attention toward ASD awareness we can eradicate this “absurd” assumption from society and the human race as a whole will find itself newly endowed with understanding and compassion. Then perhaps individuals on the spectrum will finally experience real acceptance.
The sky is ominous and gray; a thunderstorm is coming. The wind takes what it will, tossing leaves and debris into the air. My insides feel topsy-turvy too; for the last week, my daily routine has been disrupted. On a typical workday, I begin with journaling and creative writing. After I've taken time to tell stories, I dive into the realm of email and client-based work. Putting creativity first is grounding; it reminds me of what I value most, what I was made to do. Creative writing is simultaneously the hardest and best part of my day, and it gives me energy to blast through other tasks on my list.
But this past week wasn't a typical one. Instead of writing at my desk at home, I traveled to Lisle, Illinois for a keynote talk, book signing, and breakout session at the Arc of Illinois annual conference. I particularly enjoyed the sibling-focused breakout session, because it gave me the opportunity to both talk and listen. A small group of articulate, insightful siblings attended, including Nancy Webster, President of the Arc of the United States. We discussed future planning, family relationships, inclusion, and I left the room feeling encouraged. I sensed that the session had been helpful for siblings, myself included. Every time I lead a session, I learn something new, and I meet remarkable people along the way. Speaking itself is exciting, but it's the people I encounter who make such trips worthwhile.
Even so, it hasn't been easy to trade my usual routine for three major, long-distance speaking engagements in six weeks. I'm like my brother Willie in that way; our routines comfort and sustain us. I suspect that having a set routine gives Willie a sense of stability in an oft-unstable world. And as a writer, having a work routine in place affords me a feeling of safety as I take creative risks.
The importance of daily life routines came clear to me during my years at L'Arche. (L'Arche is a non-profit organization that creates homes wherein people with and without intellectual disabilities share life together.) Routines form the backbone of L'Arche life; daily responsibility remains constant. The work is never done, but then, that's not the point. The point is relationship. When you're on routine with a housemate, week in and week out, you have a unique opportunity to connect with them. You help them tend to their teeth, their clothes, and their bank accounts. You move with them through their days; you dance to the same rhythm. The relationships are built piece by piece, day by day. You become enmeshed in the process; you almost forget about the idea of results. But after a while, you chance to look up, and you can't believe what's before your eyes. Somehow—through all those weeks of faithfully showing up—you've built a friendship, a real, substantive connection. You've learned to dance together.
It's a powerful process, to be sure, but it's not perfect. After all, human beings are involved. Even after you've mastered the relational steps, you may feel uncomfortable, bored, and exhausted. You may not want to dance with everyone. But sometimes, people surprise you. Often, the partners you're most reluctant to say yes to are the ones that give you the best turn about the floor.
Likewise, routine forms the foundation for my relationship with Willie. I'm thankful for the discipline of a weekly column, for the practice of regular phone calls, because these things help me do my part to stay in relationship with my brother. This doesn't mean ignoring the hard things, or pretending that it's always easy to be Willie's sister. Instead, it means making choices based on love. It means forgiving myself, trying again, and reconnecting when we inevitably lose touch. It means speaking to fellow siblings and listening to their stories. It means choosing to dance with Willie at our cousin's wedding, choosing my only brother in all his perfect imperfection. It means writing our stories, the beautiful and terrible ones that call out to be told.
I look up from my desk; the storm is coming in. The green leaves seem brighter against the darkness of the sky.
We are almost to the end of the school year, and that means we are fast approaching the end of our teachable moments for the class of 2014. In the ramp-up to this year’s Commencement, we have students on the autism spectrum hitting maximum density. One more stressor and things are going to get ugly. Time off is desperately needed, and almost nowhere to be found. So, when a very abbreviated Spring Break arrived mid-month, more than a few students took the opportunity to take back what they felt was rightfully theirs: days added on to make up for snow days this past winter.
For several of my students, this meant missing work shifts in their Career Education program. This program is all about the development of employability skills, with one of those skills being the very grey issue of when and how to request time off. We strive to create as real-life an environment as possible, and as such have expectations that the students will give notice when they need to miss scheduled work.
My teachable moment arrived with a young woman with Asperger’s who was most assuredly feeling the pressure of too much going on and not enough “down time” to regroup and recharge. She is also a senior, which means all of that real-world stuff I keep prattling on about is here. She has postsecondary plans which could include a program in the medical field, and a Career Education program which has her working at a local hospital. When faced with increasing—albeit self-induced—pressure surrounding the week that had been slated as vacation time, this young adult made the decision to stay home from school on the last day before our break. This meant taking time off from the hospital placement. In a testament of sorts to the fact that some of what I teach sinks in, she did let us know that she would miss her work shift. She needed the day to herself to decompress, recharge and prepare for the social demands that Spring Break would present. She needed her “alone” time, and I could not only completely sympathize with her in that respect, I found myself a tad envious that there was no way I could do the same thing, given my own AS-hypersensitivities were on overdrive! BUT … missing that particular day meant missing a hospital work shift to which she had made a specific commitment.
Furthermore, and even worse, when the much-anticipated and abbreviated break arrived, so did an unwelcome form of spring fever in the form of a sinus infection. The illness ran through the break and well into the following week, which meant—you guessed it—more absence time from the hospital shift, and way more stress and anxiety when then faced with needing to miss work. This young lady could not, despite what I believe was a sincere effort, understand why I was concerned about her taking the “sick” day off in the first place. She had, after all, followed protocol for taking time off. To make matters worse, she really could not understand why this decision had any possible negative ramifications when she then needed to miss more work for a legitimate reason. My words of wisdom for her were simple enough: In the “real world” we need to consider all sorts of “what-if” scenarios, especially when it comes to work. The fear behind these words, which I do not think left their mark, is that jobs are going to be hard enough to come by in the world we live in for the class of 2014, and too many of our young people on the spectrum are entering the job market without a clear understanding of what awaits them. Hopefully when my student and the countless others like her hit the world of work, they will be met with the kind of open-mindedness and understanding that they will need to navigate the adult world. On the bright side, I know it’s there … because if I found it, so can they!
As one school year winds down for Reilly, we remain uncertain what the next one holds.
We pick him up from his second year at NYIT’s Vocational Independence Program in mid-May, not knowing whether he’ll be back for the final year of the program, or if he will be transferring to a four-year college to begin a degree program in the fall. The “unknown zone,” again. The decision from Mitchell College in Connecticut is on hold, awaiting parts of the application that aren’t under our control. As I write this, Mitchell has not received Reilly’s high school transcript (the school assured me they sent it a month ago—they are re-sending) nor the recommendation from his current academic advisor at NYIT (hopefully written and sent soon!).
The VIP faculty and staff really want Reilly to stay for the final year, as was evident in a conference call with his entire team last week. He has grown and matured immensely in the last two years, and the VIP program has served him well. While we agree with the staff that another year would be beneficial, we think he’s ready to take on a bigger challenge; in fact he needs to be challenged to continue growing.
Reilly is popular with students and staff alike at VIP. His counselor notes with amazement the change from the boy who sat alone on a rock in his first summer in the program, to a confident leader with good friends today. His literature class is reading and performing “Romeo and Juliet,” and Reilly is … Romeo! He’s done well in his other VIP classes, and in his credit classes at the school’s other campus, with one major exception. He’s doing well in a college-credit speech and communications course this semester, but is struggling in a business management class.
He texted me: “Mom, MJ (his advisor) talked to me a few minutes ago and she told me she got my mid-semester evaluation from my business management teacher and it wasn’t good.”
I immediately panicked, thinking we were wasting our time applying to college if he can’t handle the academics. But I took a breath and texted back: “Oh dear. What’s the problem?”
He failed the midterm, which he took the day after returning from spring break; he simply wasn’t prepared. He didn’t do well on a group project, which isn’t surprising when you think about it. He lives on a campus 40 minutes away from the main campus where he takes the college-credit classes. And he has autism. A group project with kids he doesn’t know is going to be a problem. He’s not a great self-advocate yet, and is likely to take the path of least resistance in an uncomfortable situation. And frankly, he ought to have been getting more help from his academic advisor with this class. It seems clear he wasn’t asking for help, and his advisor wasn’t on top of the situation.
In the conference call last week, MJ said if Reilly comes back next year, he can take more college credits and they will work with him more on his executive function and self-advocating skills. But, I couldn’t help wondering, why did his problems with the management class this semester go unnoticed? In MJ’s defense, Reilly is good at smiling and pretending everything is OK, when it might not be. He has vowed to study hard for the final, and to ask for accommodations and help.
In the third year of VIP, most of the students get paid internships. The vocational teacher said Reilly has already done a clerical class, and she would look for a clerical internship for him next year. But Reilly has said he wants to intern at the main campus athletic facility—his interest is in sports management. After some discussion on this point (frustration clearly evident in my voice), it was suggested that he might be able to get a clerical internship in the athletic director’s office, if he comes back next year.
My husband and I left the conference call still united in our hope that Reilly gets accepted to Mitchell for the fall. We think he can handle the classwork with the supports provided by the school’s learning disabilities center. All of his classes will be on one small campus, and the LD office promises strong communication between the LD support team and individual class instructors. We don’t think Reilly will fall between the cracks. At least we hope not.
For his part, Reilly is looking forward to coming home for the summer. He got his job back at the community pool and is excited about a trip to Iowa for our family reunion. Beyond that remains to be seen. Stay tuned and send good thoughts our way for college acceptance!
I think my aversion to dealing with government entities developed when I became an expat. The amount of bureaucracy surrounding an international move is astounding. Obtaining certified copies of government-issued documents, turning the certified copies into apostille certification (if you don’t know what apostille certification is, consider yourself lucky), waiting in line with a crumpled number in hand at each step of the way, and inevitably not having a crucial document and being forced to come back for another number another day … It’s no wonder I was avoiding the task of applying Cameron for Secure Supplemental Income (SSI) Benefits through the Social Security Administration. Just the hold time on the phone to schedule an appointment was enough to drive up my stress level. Last July, we had a phone appointment scheduled for the application, only something went wrong and the agent was expecting us in the office, so Cameron was deemed a no-show and the application was never made. My “Government Aversion Disorder” caused me to wait six months before I had the nerve to start the process anew.
Since Cameron has been working for two years, I wasn’t sure if he would qualify for SSI or SSDI, which is Social Security Disability Insurance. The application for SSDI can be done online, while the application for SSI cannot. I gave the SSDI application a shot but I kept receiving confusing form letters from Social Security as a result of my online application attempt. Finally, it came down to me having to bite the bullet and schedule an appointment at our local Social Security office. (They offered a phone appointment, but I didn’t fall for that one again.)
Our appointment was for 9:00 a.m., and we arrived 10 minutes early to a lengthy line outside the building. I felt my anxiety level begin to rise. Did I have everything I needed? I had sent all the documentation requested through the online application form letters. They had returned the documentation to me, so I knew they had what they had asked for. Cameron’s birth certificate had not been returned yet, but I was sure they were just holding it until the face-to-face meeting.
Once the office doors opened at 9:00, things went pretty quickly. There were two lines, one for those with appointments, and one for those without. Cameron’s name was called within a few minutes, and we were seated at a desk with our Social Security representative. Who, by the way, was quite friendly and seemed very competent. (I know … I should let go of my prejudices when it comes to government employees, but I like to prepare for the worst.) The process was painless, and we were on our way home within an hour.
You would think, with as much time and effort as I’m putting into preparing Cameron for adulthood, I would’ve had a better understanding of Social Security benefits. I am a bit humbled by how much I have learned through the process of applying for benefits for Cameron. Here are just a few of the things I know now, but should’ve known sooner:
SSI benefits are the qualifying trigger for many other benefit programs, at both the federal and state levels. For instance, our local Vocational Rehabilitation agency bases economic need on whether or not the consumer is receiving SSI. Since Cameron is not currently receiving SSI, funding for postsecondary education or vocational support will be based on financial need, using my husband’s and my tax return as the determining factor.
Social Security must determine a person has a qualifying disability before the age of 22 in order for a disabled child of a retired person to draw SSDI. In Cameron’s case, if he is deemed disabled as a result of the SSI application, he will be eligible to draw SSDI when I, his father, or his stepfather begins to draw Social Security in retirement. The money Cameron would receive would not impact the money received by the retired parent.
Upon qualification for SSI, wages must be self-reported. I just assumed that because each paycheck has money going to Social Security that Social Security knew how much money you made. Come to find out, the tax money goes to the Treasury Department, and Social Security has no link to that data.
Anytime you send documents to a government agency, use Return Receipt Request. My Government Aversion Disorder applies to the post office as well. When I sent in Cameron’s birth certificate, I assumed that the preprinted envelope would be sufficient in getting the document to the right place. Not so much. My hope that the certificate would be returned to us at the meeting was a pipe dream. Now I get to deal with another government agency to request a new birth certificate to replace the lost one.
Start early. We were told the decision process takes four to six months. This makes a big difference for us financially. Had SSI been in place sooner, the amount of funding for programs Cameron would receive from Voc/Rehab would be greater. Money out of our pockets now is money that’s not available to Cameron later in life, when public funding sources might dry up.
All of the above nuggets of wisdom were out there all along, just waiting for me. I just chose not to attend to them, and am now kicking myself a little bit. Lesson learned.
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