Cameron’s final IEP meeting has been scheduled for the end of this month. As with all things concerning Cameron lately, the thought of this final IEP meeting is contributing to the knot of anxiety in the pit of my stomach. I’m wondering if this final IEP meeting will be conducted along the lines of, “Yep, he’s on track to graduate in June. Good luck with that.” Or, perhaps the meeting will be more focused on getting ready for life after high school. The latter is what I will insist upon, of course, but will my insistence be enough? Will a representative from our local Voc/Rehab agency actually attend the meeting in person this time? Am I going to have to assert Cameron’s rights, and will the tone of the meeting turn toward confrontational? I hate being confrontational!
Cameron has essentially had an IEP since he was 4 years old. You would think with 14 years of experience under my belt, I would have the process down pat. And yet, as I’m about to embark on Cameron’s last Multidisciplinary Team Meeting for the purpose of updating his IEP, I feel somewhat unprepared. I guess part of the problem stems from the fact that I never see the IEP in action. That’s not to say that Cameron’s teachers aren’t following his IEP … it’s just I’ve never walked in, objectives in hand, and observed a class where striving towards those objectives is apparent. In all honesty, the vast majorities of the IEP meetings I’ve participated in have been ones where I’ve simply nodded my head in agreement with the objectives proposed, and signed where I’ve been asked to sign. Two years ago, I wrote a column about an empowering IEP meeting I had prepared for in advance. Yeah … that was a one and only so far. And all those recommendations I felt so great about getting added to his IEP that year? Well … I can’t say that they weren’t implemented in the classroom, but I can say I never saw clear evidence of them achieving the measurable result.
So, is the moral to my story that it doesn’t matter whether or not I prepare for the IEP meeting? No, that would be the easy way out. The moral here is that the IEP doesn’t begin and end with the annual meeting. And I need to be especially well prepared for the meeting this year. I’m going to pay close attention to the transition portion of the plan, and do my homework beforehand. I will be spending some quality time on Wrightslaw.com, just to brush up on Cameron’s rights. And just as I do my homework beforehand, I will do my homework afterwards as well. I’m going to keep tabs on those objectives this year. As Cameron has reached the age of majority, he will be signing his own IEP this year. I’m going to see to it that he’s fully engaged in upcoming meeting and understands the objectives and agrees that they will help him in the classroom. So there’s my plan. Hopefully my plan will benefit and compliment Cameron’s plan. Might as well make this last one count.
Last Thursday, we met with Cody’s case manager, program manager and supervisor at his day program for his quarterly review. I figured everything would go as normal—there wouldn’t be much new to discuss and the meeting would last maybe 15 minutes. Little did I know what was in store.
The possibility of Cody having a one-on-one aide to accompany him during his time at his day program had once been discussed in hopes that it might help keep him focused on the assigned tasks. However we opted to wait to see if that would be needed after Cody had more time to become acclimated to the program. But we learned Cody was already pretty much receiving one-on-one assistance—not from a staff person but from another client.
Cody has formed a unique friendship with a lady whose name is Laura*, who also participates in the program. We were aware of the friendship, and that as time goes by it continues to flourish, but we were not truly cognizant of how beneficial it would be for both of them.
From the start, Laura took Cody under her wing and soon they were inseparable as best friends often are. But their alliance is one which goes far beyond just a couple of people who like to hang out together. I was thrilled Cody was finally making friends. But I was ecstatic when I learned how supportive they are with each other. And because of it Cody’s advancement in the program is developing at a much more rapid pace than Bill and I thought possible.
It turns out Laura has managed to convince Cody to try things that no one else has been able to persuade him to attempt. Cody has never been really keen on crafts. Drawing on his computer is about the only exception to the rule. I’ve tried to interest him in trying different media such as making model cars, ships, submarines and airplanes, making his own T-Shirts with iron-on transfers and much more. However in spite of my endeavors to cultivate his curiosity I couldn’t get him to take the bait. But somehow Laura can.
A few years ago, Bill and I took Cody on a day trip to a local theme park. The park had carnival rides, junk food stands and employees dressed as colorful characters from the 19th century, performing comical skits. Of all the attractions at the park there were only a select few that Cody showed any interest in at all.
Recently the group from the day program went to the same park. Imagine our surprise when we learned that Cody and Laura had a ball riding all the rides, watching the craftsmen make their goods and exchanging lively banter and laughter with the nearly 7-foot-tall man who plays the part of the old-time undertaker who follows unsuspecting customers around taking their measurements behind their back while everyone else privy to his antics is having a good, hearty laugh.
In general, Laura engages in keeping Cody on task, and the staff says Laura is benefiting as much as Cody in this partnership. She is assuming responsibilities beyond caring for herself—and handling them quite well. But what is it that Laura does that can persuade him to focus on things no one else can?
As we were wrapping up the meeting, Cody’s case worker and program managers mentioned how they saw this as an opportunity to challenge Cody to step up a bit closer to the plate. He’s been attending the program on Mondays and Thursdays each week but they felt this was a good time to add another day to his schedule. And to add a higher level of structure and consistency to the plan, they thought three days in a row would be a good thing.
On Wednesdays the group attends a ceramics class. The staff feels that with Laura there, Cody has a good probability of being able to focus at a higher level and thereby increase his fine motor skills and perhaps develop a genuine interest in the craft.
*Name changed for privacy.
It’s funny how, without even meaning to, Willie teaches me so much about life.
My husband and I are on vacation with my parents and brother, and I've been savoring the simple pleasure of doing life alongside my family. Sometimes, having no plan but to relax and enjoy one another's company can yield surprising results. Yesterday afternoon was a perfect example. At the time, Willie was watching “Sesame Street,” which featured a story entitled “Everyone Makes Mistakes.” Since I wasn't busy, I pulled up a chair and watched with him. It had been years since I'd seen the episode, but still, I knew it well.
In case this short didn't feature as prominently in your childhood as it did in mine, here's the story. One day, Big Bird and Little Bird are walking around Sesame Street. Big Bird doesn't watch where he's going, and walks into his neighbor's clothes line, scattering clean laundry on the ground. It's an honest mistake, but he's distressed. What will neighbor Mrs. Washington say? And so Big Bird begins to invent scenarios, each one wilder than the last. A circus came through Sesame Street, and the giraffes scattered the laundry! A rodeo rode by and knocked the clothes down! A fire truck sped through the sheets! A tornado hit! (“Hang on to your feathers, Little Bird!” Big Bird cries.) All the while, Little Bird keeps piping up, “Big Bird, why don't you …?” He's trying to say, “Why don't you tell the truth?” but Big Bird interrupts; he doesn't want to hear it. That is, until Mrs. Washington arrives. Big Bird starts to tell his stories, but then he recounts what really happened. Mrs. Washington accepts his apology, and Big Bird helps her re-wash the clothes. Once again, all is well on Sesame Street.
As the episode ended, Willie clicked on another video, but I sat still, pondering what we'd seen. I thought about how important that video's message is for my brother and me. We are a pair of perfectionists. We'd like to think that, if we just try hard enough, we can avoid errors altogether. And I don't think we're alone in this struggle.
In both “Sesame Street” and life, I see a pattern. We encounter a problem, a reality we'd rather not face. So we invent a thousand stories in our minds about what might have happened, what we wish would happen … anything but reality. This is perfectly reasonable; after all, reality can be brutal. In reality, mistakes are made. And we'd rather do just about anything other than admit our part in them. We'd rather tell tall tales than be vulnerable. I know, because this is how I used to operate during the dark time when Willie was having meltdowns every day. I didn't understand what was happening—no one did—so I blamed my brother. I told myself that my brother was lost, that he was intentionally hurting himself and us. Why? Because the reality—that he wasn't in control of his behavior, but he was still himself; that he did love us, but couldn't show it—seemed too painful to bear. But that's the thing about the truth. It seems so scary, but it's actually liberating in a way that lies can never be.
This morning, my family headed out for a bike ride, and I snapped a picture of them standing in the sun. The air smelled like sunscreen, and my parents and brother looked beautifully, entirely ordinary.
“Have fun on your ride! And hang on to your feathers, Little Bird!” I said to Willie, and he laughed. “Hang on to your feathers!” he echoed, with a big smile. He loves it when I quote from his favorite videos. I used to think that speaking in “video” was silly; now, I'm just thankful to see my brother smiling back at me. I used to think that the world would end if I made a mistake; now, I know that everybody makes mistakes. I used to pledge allegiance to my own explanations; now, I find that people can surprise you, that being in the here and now is better than any story I could invent.
Finding job placement for an adult with autism involves a number of steps. I’ve talked about identifying jobs in previous columns. That’s just the beginning. Once an employer has met the autistic individual, I have had a meeting with the employer about the job, and I have done everything I can to try to get someone with autism hired, we play the waiting game for the phone call. I can tell you from experience, there is no better feeling in the world then getting that phone call from the employer saying “We have decided to hire your individual.” There is also no greater reward for my job then calling up a parent or telling them in person that I got their child a job, when even the parents think the individual will never work. And it’s not about just finding someone with autism any job, but finding them the right job. The right job—one that can be maintained—can provide an autistic adult a chance to earn money and have a sense of independence.
Once we have found the job and the employer has worked out all the details, it is now time to start training. Even if the job is something the individual has done in the past, it’s a good idea to have a job trial. This way the staff or the manager can see where the individual will be working, see how the individual does with specific tasks, and everyone can make sure the environment is right for the individual to be working in. An example of this might be if the individual already knows how to clean gym equipment from past experience, I might have found them a job doing the same thing but in a different gym. We then would want to make sure that this specific environment is right for the individual and for everyone else at the jobsite as well. A job trial is also a good way to identify the areas the individual may need help in as they perform the job. The staff can plan training accordingly or the parent can help develop skills on days the individual is not working.
If the job is something the individual has never done before, then some training days will be needed. There are many different ways to teach someone with autism a new job, but no way works better than another. You may have to try different ways of teaching to find the right one to fit your individual. It is often useful to do a "task analysis." Break the job down into small steps and teach one step at a time, and then once the individual has completed all steps separately you can have them combine the steps into one task. Adding a checklist to this process can help, too. Once the individual has completed a step, have them check it off as a reward for finishing the task. This way, the staff or parent can also see which steps the individual needs the most work on and help with.
Some individuals may need a more supported approach to teaching them something new. For this we can use the “hand-over-hand” method of teaching. This is where the staff or parent actually does the task while holding the individual’s hand. Little by little, the staff or parent pulls their hand away until the individual can do the task independently. Another method to go along with hand-over-hand teaching, is “modeling.” This is where the staff or parent actually does the task, showing and explaining each step. Then the staff or parent has the individual do the task, helping them as needed along the way.
There is no one right way of teaching someone with autism how to do a job. It is just a matter of finding the teaching method that works best for the individual to do the job independently. Some individuals may always need a job coach, and some might be able to do jobs without any help at all. The reason I do what I do is to help adults with autism achieve the independence of earning their own money and joining America’s workforce. And to help demonstrate that just because someone has autism doesn’t mean they can’t have jobs in the community.
It's hard for me to let my kids struggle, particularly when the kid is Reilly.
I was in my second hour of phone calls for the political campaign I'm involved in when I stopped to Google something on my iPad and saw an SOS from Reilly in the form of a Facebook message. “Mom, I don't know what to do. I'm stuck at Old Westbury and my phone is dead.” This message was now two hours old. A quick scan of FB showed he'd been crying out for help from anybody at his New York Institute of Technology campus within eyesight of a digital screen. Of course, I immediately tried to call him, feeling stupid as I remembered the part about the dead cell phone. I pieced together what had happened, reading through his latest Facebook posts.
It was his first day of college-credit courses at NYIT's Old Westbury (Long Island) campus. Reilly's program, the Vocational Independence Program, is housed at NYIT's other location in Central Islip. Two days a week, he takes a shuttle van to the other campus for classes, along with other kids in the VIP program who are taking college-credit classes. I had been following his day on Facebook. His first class, Criminal Justice went well, but he was feeling a little adrift because he was the only VIP student in the class. He had lunch alone, but the OW campus has great pizza in their cafeteria, so there was that. He posted again during a break in his next class, Speech and Communications, again lamenting that he didn't know anyone else in the class, and complaining that class is three hours long. By the time the class let out, his phone was dead and he had missed the shuttle back to his home campus.
He did the only thing he could think of: He located a computer lab and started sending out digital cries for help. Some of his friends helpfully passed on the phone numbers for the Residence Assistance office, or the transportation office, but they did him no good, as his phone was dead. It didn't occur to him, apparently, to borrow a phone or to seek help from Campus Security or someone in authority. If he had been able to locate a pay phone, he most likely wouldn't have had change, or access to phone numbers to call. The action he took, while probably not the most efficient way to solve the problem, did eventually lead to his rescue. Someone notified the RA's office and the van was dispatched to pick him up.
I could tell from his FB posts that he was upset and frustrated, and I jumped into Mommy mode. I called the Director of Residence, Walter, a really nice guy, to find out what had happened and if Reilly had been located yet. Walter assured me they had the problem under control, and Reilly was on his way back to campus. “But he asked for help more than two hours ago!” I wailed. As Walter talked, I calmed down and realized it was a minor incident and Reilly had taken steps to resolve it himself. Yes, he immediately reached out to me, but when I was unavailable, he went about looking elsewhere for help. He didn't need me to rescue him, and it was better for him that I didn't.
Reilly needs to know he can do hard things, and solve problems on his own. Some struggling builds confidence and independence. He can be resourceful when he needs to be. His first instinct is to get help from Mom or Dad, and, as a youngest child myself, I get that. But the less available we are to run to his rescue, the quicker he learns to rely on himself. While I ache when I know he's in a sticky situation, I also know those are the times we learn what we are made of.
“I'm sorry you had a rough day,” I commented on his Facebook page that night. “Tomorrow will be better.” He texted me the next morning with the news that his advisor had moved him out of the three-hour speech class and into a Modern World history class with a professor he had last semester, and in which he will have VIP classmates. Problem solved. He still has one class completely on his own, but two might have been too much for him this semester.
By the next night he was excited about the NFL season opening game, and all was right in his world. I haven't heard much from him in the last few days, a good sign, I know.
My homework this semester is to hover less and trust more. Reilly needs to, and can, work out his troubles on own.
First published on February 6, 2012.
The delegate from the State of Confusion has the floor. Well … actually, she’s on the floor in the fetal position with her fingers in her ears, saying, “la la la la la” in an effort to block out the voices.
I attended a (too much) information session on disability services this week, and quickly became overwhelmed. This is exactly why I avoid these types of information sessions to begin with. Why, oh why, are transition services and adult benefits so complicated? On the one hand, I suppose the “disability community” should be grateful that there are so many service providers out there. But on the other hand, the multitude of resources makes me have little confidence that I’ll have any chance of getting the formula right. Even if I were to get it right, how would I know?
The fact that I became overwhelmed at the information session was in no way the fault of the presenter. The presentation was focused on a specific topic that was easy enough to digest, even for me. It was the dreaded Q&A portion of the evening that had me eyeing the space under my desk, and wondering if I would still be able to fold myself into the duck-and-cover position I so fondly remember from elementary school.
The other attendees that evening all seemed to be further along in the disability life cycle than I was. Most were parents of adult children already receiving some sort of disability benefits. The Q&A portion of the evening led to a discussion about the difference between SSI and SSDI. There was mention of Section 8 Housing Vouchers and the vast number affordable units left unoccupied in the area, but the units came from a different source than the vouchers, so you have to go to another acronym to see about units, and you could use vouchers to pay for affordable units if the moon was full and the earned income did not exceed a certain level that would lower your monthly SSDI amount … Are you under your desk yet?
I have become quite dependant on my friend Google when it comes to attempting to research all of this. I can’t say that I’ve found that to be tremendously enlightening. It’s as if there’s a conspiracy among websites: One website provides basic information, and points the user to another website for “more information.” The next website points to another, and the next back to the initial site I started with. (Incidentally, this looping conundrum is the reason Autism After 16 exists. We’re trying to break that cycle, and get down to what you really need to know. For explanations of the federal programs mentioned above, read our article on Public Finances.)
To further complicate my own confusion, living in our Nation’s Capital puts me in a border state, so to speak. Within four miles of my home, I can be in Virginia or Maryland, depending on which way I turn out of the driveway. This complicates matters because different states have different stuff to offer. The vast majority of informational emails I receive from Cameron’s school in Maryland don’t apply to residents of DC. But maybe they do. So I go to the website link in the email, which points me to another website for more information.
I must bring the column to its conclusion. I’m finding it very difficult to type with my fingers in my ears.
Over supper one night, I sat down with a book I've read many times: Roland Merullo's novel, “A Little Love Story.” I flipped through the pages, starting at an arbitrary spot, just letting myself enjoy the language and the characters once more. Sure, I knew exactly how it would all turn out. Sure, I've read the first page so many times I practically have it memorized. But even so, is there really a more beautiful, poetic, mysterious first line than this: “Five miles below I dreamt the blue Pacific, scalloped with whitecaps and looking like it had been frozen in time” … ?
Merullo's novel centers around a young woman named Janet, who is dying of cystic fibrosis, and Jake, the man who loves her. Jake, the narrator, is a portrait artist. As he walks with Janet through what they both believe to be her last days on earth, he's also attempting to complete a painting of her. In the process of working on the canvas one night, Jake remarks on how much he's learned about Janet since he first began painting: “She looked smart and pretty, when in fact she was smart and pretty and unbelievably brave.” He recounts the horrors she lives with, lives through. Cystic fibrosis means constant coughing and spitting up mucus, traumatic and invasive surgeries, and Jake stands in amazement that Janet goes about living as “normal” a life as possible in the face of all this. He cannot fathom how much effort it takes just for her to breathe, just for her to do this simple thing that most of us take for granted every moment of every day.
He says, “There was no way to measure bravery like that.” Even so, he knows that most other people don't see it that way. Though Janet had the courage of a hero, she faced the world's bias and derision on a daily basis. People who didn't know about her diagnosis would make nasty comments, ignore her, or at the very least, keep their distance. Even in the face of these misunderstandings, Jake marvels, Janet has tried to keep her head up, to stay kind, to stay human.
And it was about here that I started crying and couldn't stop. Because all at once, I saw something in the passage that—despite my many readings—I'd never seen before. I saw that, if you changed around the specific challenges and replaced “cystic fibrosis” with “autism,” you'd have a gorgeous, accurate, intense description of what life is like for people on the spectrum … for my brother Willie, some of my friends, and extended family members too. Every day, they face a world that largely doesn't accept or understand their differences. Every day, they get out of bed and do the best they can when fundamental life skills like eye contact or speech or physical touch or social interaction don't come naturally to them. Every day, they move through the world knowing that they are different, that they were handed challenges the rest of us can only imagine dealing with. And yet—at least for the people I am privileged to know—the difference doesn't make them bitter. They don't give up. They show up for their lives, their families, themselves.
And sometimes it just slays me that, much as I love them, I can't take away the times when no one has been there for them. The times when they've faced the nasty looks and judgments and isolation and misunderstanding. God, what I wouldn't give to erase every one of those experiences. But that's not in my power, and perhaps that's best. In a kind of inexplicable alchemy, all those awful things actually helped make them the strong, resilient people they are today.
Though the things they've endured can seem unbearably dark to me at times, those challenges ultimately fade into the background. So maybe I don't need to look at those difficulties so closely, because they're not what remains in the end. Maybe the light in their eyes is where I need to look instead. Because Merullo's narrator is right … there's no way to measure the bravery I see there.
In my last column, I discussed learning the art of good conversation. Part of this learning process has involved another area that my autism has greatly affected: my ability to recognize emotions, body language, and facial expressions in others. At times, I have difficulty detecting the finer details of different emotions. I do not always see the telltale signs of people’s true feelings by their actions and mannerisms. I then become confused about the meaning of what is being relayed to me, and I become lost or I misinterpret their meaning. Therefore, I recently decided to do something about this and learn more about emotions and the ways that people express them so I can better understand people around me.
One of the tools I am using to learn more about emotions is a series of flash cards with different faces that express different feelings. I use them in two ways. One way is a memory game: I match pairs of faces and copy the facial expression using my own face. This way, I not only learn what the faces look like, but I learn how I can express them as well. Next, I use the cards for a game of “Go Fish.” The questions can become indubitably bizarre at times: “Do you have any surprised faces?” “No, go fish. Do you have an angry face on you?” For extra fun, each player has to make the face they are asking for, which can be a bit hard for me if I cannot picture it in my mind.
I also recently purchased a workbook series which covers different aspects of recognizing emotions, recognizing nonverbal language (body language), making social inferences, getting along with others, interpersonal negotiations, and conversations. I have already had some interesting realizations after doing some of the exercises. One of the first exercises I worked on concerned the different ways that people might express emotions. My mother helped me by demonstrating the emotions herself. I got some on the first try, while I misread others over and over. I think the problem is that I could interpret one facial expression as several different emotional states depending on the context. My mother’s angry face could also mean disgust, disappointment, self-pity, or any one of several other feelings. There may not be enough variation between the different faces for me to know the difference. I would have to rely on other cues like what the other person said or any nonverbal (body) language they might be using to come to the right conclusion. I will have to work on putting all the pieces of people’s facial expressions and body language together to gain better footing when it comes to understanding someone’s emotional state. It is much more intricate than I had anticipated. This surprised me even though I do know that I misinterpret a lot of signals people are sending me. I am learning that one face could represent many different emotions that I had not even thought of.
Another activity was very enlightening when it came to the subject of nonverbal communication. The exercise involved me watching a half-hour television show and writing down all the instances of nonverbal language I observed the characters using and the meanings they conveyed. In only five minutes, though, I had filled up the entire page with examples. It astounded me how much the characters relied on nonverbal cues to support what they were talking about or to send implied messages. They used their hands to emphasize particular points in their conversations, they pointed to certain people as they talked about them, and they moved their hands in certain motions or directions. They also expressed disgust, frustration, and surprise through their facial expressions. In a few cases, they moved away from other people and turned their heads away when they wanted to avoid certain subjects or to be by themselves. All of this occurred in only five minutes; I am sure that if I had kept watching, I would have probably filled every nook of my worksheet with my observations of the nearly constant stream of nonverbal actions. I usually barely notice that I or other people are continuously using nonverbal language when having conversations. I now realize that I need to focus more on these details as I speak to people or they speak to me so that I will be able to fully grasp the entire message that is being conveyed.
One other tool that I am looking forward to using is a computer game featuring real human faces on animated backgrounds. The game will present numerous real-life examples of various feelings in 11 carnival-like activities. It will teach me what cues to pick up on to determine what feeling I am looking at, and it will also encourage me to try making the faces myself so I know what each emotion feels like. This tool should be especially useful, and I cannot wait to experiment with it.
Some other tools I have also acquired recently include an emotions wheel that I really like and a book that I can draw faces in which emphasize the role of the eyes, mouth, eyebrows, and forehead to convey each emotion. Both are welcome additions as they give me different perspectives to learn from.
Emotions and nonverbal communication have been a mystery to me for the longest time. For me, interpreting them was like reading Egyptian hieroglyphics and not getting the complete message. I feel the new tools I have acquired are my Rosetta Stone for finally understanding these complicated and intricate facets of communication. I have already learned many surprising things about emotions, and I look forward to having a better understanding of them.
I saw stars.
We had just finished the 30-day review meeting of Madison’s adult placement. I had scheduled it early enough on Tuesday so I could still take Madison out for our customary lunch together. I had wheeled into the lobby where I was to meet Madison, but had stopped to take a phone call from the pharmacist about a medication for her.
Madison met me as I was finishing the call. I’d just hung up when I felt a stunning blow to the top of my head. I slumped over, seeing stars, and then looked up from my wheelchair to see Madison laughing. It took me a minute to put it together.
She’d hit me. Hard. Whacked me full force across the top of my head. And was laughing hysterically.
It’d been years since she’d hit me like that, but my response came thundering back. “Madison Rae,” I said to her in a low calm voice, grabbing both hands. “Look at my eyes. There is no hitting.”
She looked at me, smiling, eyes still twinkling.
“Madison, look at me. There is no hitting. “
Her smile faded.
“Madison hurt Mommy. Say, ‘Sorry, Mom.’”
“Sorry, Mom,” she mumbled, the twinkle gone.
“There is no hitting.”
I’m not sure what provoked her; maybe she had waited too long. Maybe she didn’t like my phone call. Maybe it was another adjustment issue like the ones we’d just finished discussing in the meeting.
But now I had a decision to make. Should I take her to lunch, in spite of her behavior? Would she think it rewarding? Or would it set off an even bigger upset?
“Will anyone be able to go with us?” I asked the Day Hab staff.
The answer was no. I knew it might be. I’d been told many times that Adult Services did not include as many resources as the education’s Pre-21 program.
“No lunch today, Madison,” I said. “Kiss Mommy goodbye.”
And she did.
“And remember,” I prompted her.
“I love you,” she replied.
“Forever,” she said as they took her back to her room. I hoped our goodbye routine would ease her back into her schedule.
“I don’t want to reward that behavior,” I told her aide. “I will FaceTime her tomorrow.”
I wheeled out of the building, my vision blurring as the tears finally spilled. My head hurt. My heart hurt. Madison wasn’t the only one who had to adjust.
In FaceTime the next day she was happy.
“Was she upset after I left?” I asked.
“Not at all.”
“Whew, I’d worried about that.”
And after singing, Raffi’s “Do Your Ears Hang Low,” and Mary Kate and Ashley’s, “Brother for Sale,” Madison pushed the end call button and we hung up.
I stared at my blank iPad and wondered how long it will take her to get comfortable with the new program. Was it an isolated incident? For our future lunches, did I want to chance that kind of behavior in a public place with no staff to help me?
What was safe for Madison? What was safe for me?
Then it dawned on me—I could bring lunch to her. I could pick up lunch and we could still share a meal. That would be our transition plan.
Until we both adjusted.
It was particularly cold in the mall, as the A/C worked its way through the end of peak back to school season. My daughter and I stopped at the espresso kiosk for a hot chocolate and a latte in our efforts to warm up. Behind me I heard the echoing vocalizations bouncing off the two-story interior. It was loud, but not alarming … for those of us in the know. I glanced over my shoulder and saw a gangly young man of impressive height—I’d say over six feet tall—ambling behind a caregiver, or perhaps it was his parent. I chided myself for looking their way, but sometimes I think others sense when they’re being looked at by someone who’s been there and done that versus gawked at by someone insensitive to what life is like with a disability.
A young woman and her small daughter joined the line at the espresso bar, and though they were mid-conversation, I could tell they were discussing the young man who had just passed. The daughter, no more than 6 years old, had apparently asked her mother about the man making the strange sounds.
I heard the mother say, “… he has autism.”
“What’s that?” asked the daughter.
“It’s a sickness in your head that makes you do strange things.”
“Does it make you tall?”
This overheard conversation stuck with me throughout the afternoon. A “sickness”? And why did the mother assume the young man had autism? That’s not the first conclusion I would’ve come to upon seeing the young man, and I’m an expert armchair diagnostician. I think it’s fair that the daughter was curious about the young man, and fair that she asked her mother about him. But the mother’s response left me bristly.
This feeling was echoed by my daughter on our way home from the mall.
“Mom, did you hear that woman behind us when we were getting hot chocolate?”
“Yes I did.”
“Didn’t you think her description of autism was a little unfair?”
“Actually I felt it was wildly inappropriate.”
If my 10-year-old daughter understands that the mother’s description of autism was unfair, I suppose I wasn’t being overly sensitive after all.
This incident has led me to wonder, now that society is becoming aware of the inappropriateness of the “R word,” might “Autism” be the go-to substitute word? As I type this, I remember the stab of pain I felt when reading my (NT) teenage nephew’s Facebook comment regarding a goofy picture of himself: “I’m autistic.” I backspaced over my responding comment, “No, but your cousin is, and it’s nothing to joke about.” I chalked it up to kids being kids. For those of us inside the disability bubble, we forget what ignorance is like. We forget that there are people that still don’t understand intellectual and developmental disabilities. We’ve been up to our eyeballs in early interventions and behavior management and whatever the crisis of the day may be for so long that we forget that those around us might not be aware of what’s going on inside our bubble. We hear the growing numbers of diagnoses and think that surely there’s no one left untouched by a disability of a loved one. But then again, there seems to be frequent news reports of tragic incidents involving people with disabilities that are victims of bullying and abuse for no reason other than their disability and the ignorance of the aggressor. Maybe “Ignorance” should be the new R word.
Like many people who have ASD, Cody has a strong aversion to change. He’s very routine-oriented and very geared toward structure and organization. He’s been my little creature of habit—or at least he has been until now.
Cody has made subtle changes in his life on his own off and on. For instance, for weeks on end he may want the same breakfast every day—say a pancake and sausage sandwich. Then without warning he’ll ask for cereal and orange juice and that will be his new breakfast for the next few weeks. But that’s been about as bold as it gets. Until recently, that is.
I guess I really started noticing Cody’s interest in variety progressively growing stronger when he started day habilitation services a few years ago.
As you may have read in my previous articles, we had sort of a revolving door for staff members who came and went. Each time a staff member would leave and a new one replaced them, it would be a big adjustment for Cody until he was used to them enough to let them enter his comfort zone. But after a year or so it wasn’t such a big deal anymore. But when I heard the program coordinator was leaving Cody’s current program I thought for sure this change would be a major issue.
The program coordinator and Cody had a great rapport with each other. I thought this would obliterate the affinity that Cody has developed for the program. But to my surprise it didn’t! And Cody seemed to take pleasure in meeting the new coordinator. He greeted the guy with a warm smile, shook his hand and said, “Nice to meet you!” I couldn’t believe it.
This was a change Cody not only handled with complete grace, but it was clear that his level of self-confidence had skyrocketed from where it had been for so many years. I really saw more maturity in Cody than I had ever seen before. And here I had expected an anxiety attack that would be worthy of publication in the most esteemed psychology journals, but it didn’t happen. Oh wait, yes it did. That was me having that attack. But Cody managed the transition just fine.
Over the last six months I’ve watched my son’s level of independence soar as well. He now clears the table on his own after meals, without being asked. He is doing much better about taking on hygiene tasks on his own. His dental checkups have actually been a pleasure to go to. He’s making more effort to complete his shower with fewer prompts. His social interaction has increased. He’s making friends at his day program and he’s always smiling when I pick him up. And he’s making good decisions when picking out his clothing for the day. He picks out clothing that is both weather-appropriate and coordinated in a tasteful way.
Cody’s language skills are also improving. He’s becoming more verbal about letting us know if he doesn’t sleep well or if he doesn’t feel well. This has been a major hurdle for him. Getting this kind of information from him in the past was almost impossible.
But he’s also becoming more outspoken about things he sees as a problem or things he doesn’t like. He often barks at his nana to use her cane when he sees her without it. And the other night when Bill asked him where he got the soda from, he told Bill, “That’s none of your business!” So sometimes the attitude that comes with this new found courage has to be curtailed a bit.
Could it be that all of the situations I saw as troublesome with day programs in the past were really situations that were instrumental in boosting Cody’s skill level and self-esteem in such a profound way? I have to wonder now.
Couple those experiences with all that he’s accomplishing with the help of the staff at his latest program and it does nothing but affirm and strengthen my belief that change for the better is always possible.
Last Friday was my first day as a volunteer for a local respite group. Recently, two area churches paired up to provide this much-needed service for our area's special needs community. One Friday night each month, special needs parents drop off their children for three hours of free respite care. Each child is paired with the same one-on-one volunteer each time, so that trust can grow. At my first respite evening, I was assigned to accompany David* one of two young brothers with Fragile X syndrome. Fragile X is a genetic condition that causes intellectual disability and developmental disabilities, including autism. Given my experience working with individuals with autism and Fragile X, I understood why the organizers had paired us together. Even so, I was a little nervous as I walked over to David for the first time. Will we connect? I wondered. I tried to keep things simple, introducing myself and letting him know that I'd be there to hang out with him for the rest of the evening. He didn't respond, but I wasn't worried—I knew I had to let him take the lead. For the first half hour, that meant sitting alongside David as he pushed toy cars around a table. He liked hearing the sounds the cars made; he frequently pressed them up to his ears to listen. I stayed close, but quiet.
Soon, David started talking to me, unprompted, about a birthday cake he was making out of Play-Doh. His speech was somewhat difficult to understand, so I listened closely. And when he orchestrated a pretend surprise party, I did my part. When I popped up from under the table and said, “Surprise!” his smile was out of this world. Yet much as I enjoyed David's company, three hours was a long time for an introvert like me to spend with a rowdy group of children. And David had a few challenging habits, like grabbing food or toys away from others. Yet even in the less-than-stellar moments, I felt like I was right where I was supposed to be.
I stuck close to David, and the perseverance paid off. Later in the evening, a leader showed the kids how to do tricks with neon fabric, starting with simple prompts like, “Toss the scarf with one hand and catch it with the other.” David attempted most of them, and did fairly well. But then the leader asked the kids to blow as much air as they could into their fabric squares, then catch them before they drifted to the floor. Most of the children struggled with this task. As the instructor coached the kids, I was standing a few feet behind David. Without warning, he gently leaned into me, trusting that I would support him. As he did, he held up his scarf and said, “Help me!” I did. Together, we took deep breaths and set the scarf flying.
I can hardly describe how I felt in that moment. It reminded me of the time when Willie fell asleep on my shoulder on a boat ride. As I wrote, “For all the times when I have not had what Willie needed—be that a calm presence, a greater understanding of his mind, or a solution to his behavioral challenges—in this moment, I do have what he needs. In this specific instant, I can offer him a peaceful place to rest.” When David took those steps backward, I realized: He didn't need to do the scarf trick perfectly. (In fact, he gave up, happily, after that sole attempt.) He just needed to know that someone would be there to help him try.
As I was walking out the door that night, one of the event organizers handed me David's artwork; he'd forgotten it. Paper in hand, I jogged to catch up to David's family. When I handed David the paper, he grinned. I said goodnight, but David was too caught up in his art to reply. But just as I reached my car, I heard his voice call out, “Good night!” And I can't be sure, but I think he said my name.
Reilly's summer is rapidly coming to an end. He's visiting a friend in New England for a few days, then back for a couple more days of work, some packing, and we're on I-95 for the trip back to Long Island and NYIT. He's had a great summer, structured by him to suit his taste. I guess that's a good thing, even if our agendas didn't always match up exactly. If I asked him to grade his summer break, I think he would give it an A+. My grade would be a little lower, maybe a B-, but it has exceeded my expectations in some ways.
I look back at the manifesto I wrote in the spring, and the tasks I set for us, and I'm a little discouraged at what wasn't accomplished. On the other hand, my worst fears weren't realized and Reilly stepped up to the plate in some surprising ways.
Here is our report card:
The job: A solid A. It seems to have gone quite well. Reilly worked the front desk at our neighborhood pool, checking people in, answering the phone, making announcements. He loved it and the manager said he did a good job. Just as I was suggesting to Reilly that he have the manager write him a letter of recommendation, the manager got fired over some dispute with the board of directors. Actually, two managers were fired and a third quit over the firings. Reilly took the shake-up in stride and got along well with the temporary manager hired to finish the season. For his part, Reilly managed his schedule very responsibly, never missed a day, forgot a shift or was late to work. He got himself up and ready for work mostly on his own, though he didn't always get as much sleep as I thought he needed. He worked some extra shifts when asked. He found the lifeguards entertaining, and seemed to have a pleasant attitude on the job. I gave him a ride to work most days, but he happily walked home on the few days that I was too busy to pick him up. All good.
Hygiene/personal grooming: Always a sticking point, I give him a C-. He did shower willingly on days that he worked, often preferring to sit with his own stench on his days off. His sensory sensitivities still make him reluctant to brush his teeth or shave. And I don't know what his antipathy to deodorant is all about. Maybe his future wife will whip him into shape in the grooming area. I'm going to have to give up.
Sleep: From my point of view, a C. See job section above. When he had to work a 9 a.m. shift, he moved his bedtime back from his usual 3 a.m. to maybe 1 a.m. Some days he was eating breakfast while I was starting to think about dinner. The only thing saving him from a failing grade in this area is that he did get himself up and ready for work when he needed to. His sleep patterns, while far from ideal and personally annoying to me, didn't really cause a problem for either of us.
Citizenship: Maybe a B-. Reilly maintained a generally sunny attitude during his summer. There were a couple of meltdowns when our agendas or expectations clashed. I took exception to his wardrobe choices when he was getting ready to take the train to New Jersey to see a friend, and I enlisted Reilly's sister, Brigid, to help me convince him to change clothes. He screamed at both of us, but eventually gave in and changed. He completed his weekly chore of taking the trash out for garbage day, and toting the cans back in, without much nagging on my part. He didn't actually do his own laundry, but folded it willingly after I took it from the dryer. I got too busy with a new volunteer job to spend much time getting him to do other chores, so I share the responsibility for this grade. But he cooked his own breakfast a few times, making egg and cheese tortillas one day and French toast another day (with some help). He was generally flexible and easy-going on a family vacation, with only minor conflict with older brother, Ben. Kudos to both of them.
Physical Activity: Grading him on this one would suggest there is something to grade him on. Slim to none. Except for walking home from work a couple of times.
Social Life: A-. While he didn't seem to make any new friends this summer, he socialized a fair amount with old friends from high school and current NYIT friends. He successfully traveled on his own (the aforementioned New Jersey and New England trips), or partially on his own (the New York trip to see his girlfriend). He went to an amusement park with a high school buddy, and even rode a roller coaster! He went to the movies frequently, sometimes with buddies, sometimes alone. He was a great traveling companion to me on our family reunion trip.
Extra Credit: Reilly earned an A+ for his reaction to our loss this summer of two beloved, and very elderly, cats. They were littermates, adopted when Reilly was 4 years old. They got sick and died within three days of each other in July. Reilly posted memorial pictures of Cinnamon and Oreo on Facebook and grieved their passing entirely appropriately, better than his Dad (who had no childhood pets and takes these things exceptionally hard).
Reilly goes back to NYIT for his second year on September 3, and will help with new-student orientation. He's excited about the new year, and has been talking about the two for-credit classes he's taking: Public Speaking and Criminal Justice. I'm excited for him, and looking forward to my empty nest again.
Wish us both luck for smooth transition!
A new school year means a new internship for Cameron. One of the many advantages of Cameron delaying graduation has been that his schedule has allowed for an internship for a third year, while most students at his school only have an internship for one year. I have always felt that at this stage in Cameron’s development, experience in the workplace is of equal importance to experience in the classroom.
I received an email last week from Cameron’s Transition teacher, asking for my input on Cameron’s internship this year. I’m very grateful that the school has been so supportive with their internship program, and has allowed my involvement in finding the right placement for him. Cameron’s current paid employment at Angelico Pizzeria was initially an unpaid internship. The school supported this placement, even though it was 11 miles from school, and required a lengthy travel training session. Everyone who knows Cameron well knows of his life’s ambition to own a pizza restaurant. The school has supported this ambition by finding him a second internship at a small restaurant.
When my input was sought for this year’s internship, my first instinct was to say, “It doesn’t matter where, as long it’s in food service.” But then I started to think about it a bit further. Cameron has been washing dishes for two years now. What other skills can he expect to obtain at a restaurant during non-peak hours for his short internship period? Might there be different valuable skills Cameron would acquire if we start to think outside the restaurant box?
I had a chat with Cameron about what type of internship he would like. To my surprise, he said it didn’t really matter if it was a restaurant or not. He expressed a preference for working alone, as opposed to in a group. I tried to offer some examples like working in an office or working at a gym. He offered his own suggestion of working at a vet’s office or a pet store. It was a great suggestion, made even better because it was Cameron’s idea. It’s not often that I can engage Cameron in a conversation, much less engage him in a manner in which he responds with a meaningful contribution. There are typically a lot of “Yeahs,” “I guesses,” and “I don’t knows” when discussing Cameron’s future with him. I felt that little rush of pride when he made his internship suggestion. It was a welcome feeling, since lately I’ve felt so much dread when it comes to Cameron’s future after high school.
Cameron’s new placement is still a few weeks away, and I always get a little anxious when it comes to Cameron in a new employment setting. The first thing that pops into my mind is, “I hope the manager is sympathetic to Cameron’s idiosyncrasies.” But instead of hoping for a sympathetic employer, I should probably focus my energy on Cameron’s behaviors. While those of us who spend day in and day out with Cameron are quite accustomed to his ways of dealing with sensory overload and the tics he exhibits, the general community will find these behaviors wildly inappropriate in some settings. And Dear Ol’ Mom can’t follow Cameron into the workplace each day to prompt him for alternative behaviors when he starts down his all too familiar path of chirping, jumping, and clapping. Just as Cameron will need on-the-job training to learn his tasks for his new internship, likewise his manager and fellow employees will need on-the-job training to learn how to redirect Cameron when necessary. Hopefully, with some practice, Cameron will learn to self-manage these behaviors without prompting from others. I’m afraid if he doesn’t, finding the right job placement for him might be like finding a needle in a haystack.
Recently I signed on to help as a technical consultant for a new indie film called “Jane Wants A Boyfriend.” The film is about a young New Yorker named Jane who is in her mid 20s and is trying to find a relationship. The thing that makes this difficult though is that Jane has Asperger’s. This is one of the main reasons that I wanted to get involved with this film. In 2012 I worked on the movie “Joyful Noise” to help consult regarding one of the characters who was a teenager with Asperger’s. Now this film gave me a new opportunity to consult for a new character with Asperger’s.
While the film is not set to be released until sometime in 2014, the pre-production has already begun. I’ve been watching several movies recently featuring young adults with autism, specifically “Mozart and The Whale,” “Adam” and “The Story of Luke.” A realization I’ve been coming to while watching these films and seeing Jane’s character start her journey is that we really should credit the actors and actresses for taking on these roles. Autism is not an easy thing to portray especially when it comes to young adults in transition.
Although autism can affect many individuals differently, a consistent feature I’ve seen in these films is the sensory overload that the characters deal with. This is where consulting for these films has become very tricky. While my work on “Joyful Noise” involved trying to help develop a character who was going through puberty and getting through school, Jane’s character is trying to transition to living independently and finding love. Possibly the hardest part of giving advice because of this is what they need to portray to show the sensory overload to an audience.
Because all individuals with autism are unique, I’ve told the actors that it’s important to put your own spin on it and try to make it unique. It’s important to find a few coping techniques for the characters to engage in when these overloads begin. Things such as having a stress ball, using noise cancelling headphones and listening to soothing music can be helpful in times of sensory overload. I find such techniques helpful, and such activities might be good to incorporate into character development in these films.
So if anyone is ever looking for advice on how to play a role with autism and portray those sensory difficulties, the best advice I can give to you is to take some time to get to know autistic individuals within our community. Get to know people who are in similar situations to the characters. Today there are countless young adults on the spectrum who are self-advocates and want to help people be aware of what autism is. Including us is how you make these portrayals realistic.
This week, I've been wondering: How has having a younger brother with autism influenced my perspective on faith and spirituality? What has Willie taught me about worship, just by being himself? The list below is based in my specific experience, yet the overall lessons apply to a wide range of traditions and belief systems. Feel free to share your thoughts and reflections in the comments! (For more, be sure to check out “Autism in Communities of Worship.”)
There's beauty in order, structure, and liturgy …
My brother's prayers always follow a consistent structure, one that Willie himself developed. As years pass and I hear my brother's prayers again and again, I find new meaning and significance in Willie's words. Hearing loved ones on the spectrum repeat the same prayers or songs over and over can be monotonous at times; there is a tedium factor. Yet there's also an opportunity, a window into people's minds and hearts. When we listen to the words or sounds our loved ones choose to emphasize, we learn more about who they are and what they value. Often, if we take the time to tune in, we will be surprised and moved by what we hear.
… and order, structure, and liturgy can be flexible, too.
The familiarity of repetition and consistency can give individuals on the spectrum a sense of safety. Yet there's also a time and place to set aside a tradition in order to make room for a new expression. For example, when I lived in Washington, DC and served as a live-in direct caregiver for adults with intellectual and developmental disabilities, I appreciated the flexibility of their event planning, religious and otherwise. There was always a plan and an outline in place, but there was also a willingness to get off-track. There was an implicit acknowledgement that we might need to deviate from the plan. Be it dashing off to the restroom with one member or waiting patiently for another, flexibility was fundamental.
Silence is golden …
During my time as a caregiver, I craved silence. On most days, I was surrounded by sound and the hustle and bustle of living in a 13-person household. As an introvert, I desperately needed quiet, time to relax into solitude. I visited several different churches, but I didn't feel a deep sense of belonging … that is, until I found a tiny Taizé prayer group that met on Monday nights.
Taizé prayer services are a blend of song and silence; our group, followed a liturgy of simple songs, with periods of quiet reflection between them. For me, this service was a much-needed time of sanctuary and peace. After a very structured religious upbringing in a fundamentalist church, I was insecure about my need for silence. I wondered about my desire for such a small “church” group—was it acceptable? But then I thought of my brother—for whom quiet time and smaller groups can be sanity-savers, lifelines—and knew that I was right where I needed to be.
… and so is laughter.
As I wrote in "Run Away Laughing," playing silly games with my brother taught me, “... [to] take connection with Willie in whatever form I find it. To celebrate what works, rather than focusing on what doesn’t. To see our similarities and honor our differences. And most of all: To do whatever it takes to end up in a pile, laughing.”
Each person brings their own unique gift, and every gift is of value.
When Willie plays the piano for a special music segment in church, he offers his love for music, his talent, and his hours of practice. When he sings hymns, he offers full-throttle enthusiasm. Even on days when Willie finds himself overwhelmed (or angry at himself for skipping a verse in a song), he still has something to offer. If he needs to exit the church auditorium and take deep breaths in the hallway, he does, without judgment or guilt. In doing so, he teaches me that it really is all right—that it really is, in fact, an act of great faith—to show up and do the best I can.
One of my biggest challenges in life has been trying to start and carry on conversations with other people. My autism has greatly affected me in this area for many years, making it seem to others that I am not paying attention to them or I am not interested in our talk. With time and practice, I have gotten much better at it, but I still have to fight my inner urges in order to be successful.
The conversation issue that sticks out most in my mind is maintaining eye contact with the other person while we are talking. When I find myself in an environment filled with distractions, I find it hard to resist turning my attention toward them. My sensory system is wired in such a way that those distractions immediately stand out to me and grab at my mind for a moment and become my personal “spotlight.” If there is a colorful decoration or a flashy object in a room, I might glance at it for a few seconds and lose myself to thoughts about the decoration or object. Then, I miss what is being said or the flow of the conversation before returning my gaze to the other person. Sudden noises like a honking horn, a crying baby, or from a pet or animal are enough to take me away as well. Movement has the same effect. If I catch anything moving in my peripheral vision, it could be enough to distract me. Even the smell of perfume, cologne, or other strong scents can sway me. It is also especially difficult for me to remain focused on a conversation if the other person is taking a long time to make their point. When this happens, I cannot grasp the “idea” that they are trying to convey and it makes it hard for me to concentrate on the topic at hand and the person speaking.
In the speech classes I used to take, I worked very hard on not letting these distractions get the better of me and keeping my eyes on the person I was speaking with. I still try very hard to give the other person in a conversation my full, undivided attention. I have gotten better at this as time has gone on, but it remains natural for me to gravitate toward other sources of interest in between thoughts.
Another challenge which I still have to control is my desire to dominate the conversation with my own interests and exploits. Most of the time, I feel like I have a lot to address and clarify, so, in the past, I have been known to talk for long stretches of time without letting the other person get a word in edgewise. Even if I did let them talk, I did not listen to them and instead thought about what I wanted to say next. I think this might have caused other people to think that I only cared about myself and not others, which was totally unintentional on my part. It was not until my parents pointed out to me that I was doing this that I noticed it. From then on, I have worked very hard to let the other speakers in conversations voice their opinions and ideas. Now, I say just a little bit of what I want to say, and then I let the other person add their thoughts while I think about how what they are talking about ties in with my thoughts. Next, I build off of their ideas with my next point. I think I have more meaningful and complete conversations this way, and I learn a lot more about the world and my family, friends, and other people when I take all of what everyone says into consideration.
I had an opportunity to further my conversation skills during a recent picnic in a nearby park with my adult social group. During the picnic, I found it hard to chat with some of the people I met because I just do not know them that well. A strong feeling of uncertainty colored quite a few of my conversations because I did not know what was considered acceptable. I could feel myself becoming nervous and noticed that my eyes darted around to the other picnickers and the park’s magnificent foliage while I was speaking, and I think I might have rambled on a bit. As the afternoon wore on, though, my level of comfort improved, and I felt it got easier to carry on an engaging conversation. I learned more about my friends, and we had a great time playing some games that were there. The conversations we had while playing the games were very enjoyable, and I was glad to have them. They were my favorite part of the day. When I have a great conversation with someone, I remember it for the rest of the day and for a long time afterward. Specific details of what we talked about may fade with time, but I remember the way we connected with each other and talked about things we both liked or found interesting. The feeling of satisfaction I get after a good chat is one I find hard to describe in words, but I can say it is well worth talking about.
As soon as I heard the solemn strains of “Pomp and Circumstance” I was a puddle.
Luckily, the school principal, Cindy, had already taken the precaution of passing out boxes of tissues just before the ceremony. Amidst applause and tears, we watched as the graduates in green caps and gowns marched into the gym. Our son Mickey was graduating from the transition class he’d been attending the last year and a half.
Mickey’s teacher, Jackie, had alerted us that he’d written a graduation speech. “There is no pressure for him to read it if he decides last minute that he does not want to,” she’d said. “He’s told me he wants to wear regular clothes under his cap and gown, so it’s up to you if you want him to change. This is a stress-free event!”
Oh, but not for me.
This was the culmination of everything my husband Marc and I have worked long and fought hard for. Thousands of hours of therapy that began when Mickey was only 19 months old. Not knowing in those early years if he would ever learn to speak. Struggling for coverage with insurance companies. Fighting for services with the school district. Navigating medical crises. Years filled with fears and tears, but joy and pride too, for Mickey’s many hard won accomplishments.
Jackie had prepared personal remarks for each of her graduating students. “Mickey has been my biggest comedian in all my years of teaching,” she told the audience. “Every day he arrives into school making jokes and pretending to be various characters—if we let him I bet he would spend the entire day acting silly and making silly remarks.” She described skills mastered; friendships maintained. “I am going to miss Mickey,” she said, “but I will be happy for him, too. I know he is going to be a success at whatever he chooses to do, because he already is.”
Jackie motioned to Mickey. Beaming, he bounded up, speech in hand. He thanked everyone. “I learned much about working in the community and getting along with others,” he said. “I had fun this year!”
One last time, I wondered: should we have also asked to let him walk in the regular public high school’s graduation ceremony? A small sliver of sadness. After all, he’d spent six years there. But Mickey is 21 now; his high school contemporaries are long gone. And Mickey didn’t seem to think he was missing out on anything. Quite the contrary. I thought of something wise my older son Jonathan had recently said: Focus on what you have; stop focusing on what you don’t.
We adjourned to the conference room for lunch, and everyone posed for pictures with the graduates. I watched in awe as Mickey confidently worked the crowd, introducing family members, therapists, and teachers to each other. So at ease. So appropriate. “Look how exuberant he is,” Marc marveled.
Again I thought of Jonathan’s words. Carpe diem, I told myself. Seize this day and savor it. I hugged Mickey.
“So proud of you, hon,” I said. “Love you.”
“Love you too, Mom,” he said.
We call graduation “commencement.” A beginning. But it is also an ending, the punctuation mark that seals off 16 years of formal education. The yellow school bus won’t be stopping at our door anymore. We are crossing that bridge between childhood, and ,,, whatever comes next.
Cameron’s final year of high school begins in a week and I’m finding myself in a bit of a panic. Not because of the coming school year, but because of what comes after it. I realize this fear of the unknown is a recurring theme in my columns, but this time I mean it. I’m really starting to freak out. Cameron’s exposure to the community college classroom via his driver’s training course was not a resounding academic success. Cameron’s employment experience outside of his beloved Angelico Pizzeria was also not so successful. What I find most concerning about my panic level is that I’ve always considered Cameron ahead of the game in comparison to many of his peers. I’m not aware of any of Cameron’s classmates that have maintained paid employment and attended a course at community college prior to graduation. So if Cameron is ahead of his peers, why do I feel at such a loss as to where he’ll go from here? As Cameron is repeating his senior year in high school, many of the parents I befriended over the years now have children who are recent high school graduates. I don’t recall any of my friends having the wild-eyed look on their faces I now see in the mirror, nor do I recall them clutching their stomachs from the burning feeling of despair. How did they hold it together so well? What did they know that I don’t?
I’m back to my obsession of surfing the internet in hopes of finding some solution for postsecondary education. I’m having a hard time keeping myself grounded. I’ve written before about the allure of programs’ websites and how the reality of a program can be completely different from the emotional appeal of an expertly crafted online marketing pitch. But I’ve found a program’s website that’s really appealing. And the 40-page application with four recommendations and updated testing results are due by the 31st of October. Never mind the fact that I’ve never set foot on the campus, nor know anything about the program that’s not on the website. This is the place for Cameron, and I’ve got to get him in!
As I look through the lengthy application, I begin to strategize my parent assessment answers. I find myself wondering what answers the admissions team is looking for, and how can I make sure I present Cameron as a highly qualified candidate? Wait a minute … Did I just write that? Am I really more concerned with the answer they’re looking for as opposed to the answer that truly represents Cameron? The ideal candidate for this program may be a completely different student type than Cameron. Maybe I should take a few deep breaths. But what if there’s another ideal program out there with an October 31st deadline, and I miss the deadline? What else might I overlook? Really … deep breaths.
My postsecondary preparation To-Do list is growing, right alongside my anxiety. I need to look into revised testing, check in with Cameron’s Voc Rehab agent, acquire the necessary recommendations, and get in touch with as many folks as possible that have been here and done this. Maybe I should also peruse the self-help aisle at the book store, and flip through a few books on anxiety-reducing techniques!
Cody appears to sometimes wander aimlessly, pacing back and forth and rambling on with what seems to be an endless stream of echolalia. But his behavior is not always random and meaningless. There are distinct patterns of words and actions that are meant to achieve a clear objective. And after years of observation Bill and I have been able to discern what some of those objectives are—particularly when the goal is to interact with others in social situations.
It has been my experience that many people believe Cody has no actual desire to participate in social experiences because he often appears to be off doing his own thing, not paying any attention to anything around him. But for the last year we have noticed a monumental shift in the way Cody demonstrates the level of his awareness.
Cody used to not speak of an event until much later. Until he did we were not entirely sure how that circumstance affected him. Some believe it is because it takes him longer to mentally process an event when the real issue is a language processing deficit. And because there have been many times he could not express himself with language many people are led to believe he lacks the capacity to be social.
Over the last few years Cody’s language processing issues have begun to wane and with that his true desires for social interaction with others has become apparent. His wish to participate in conversation has dramatically increased. He listens to the conversations of others and begins to verbalize about it right away.
For the last year we have had a dead limb hanging high in a tree that we have been unable to get down. Today it came down and I told Bill I was “so thankful” it did. Immediately Cody looked Bill in the eye and told him he was “so thankful” the limb came down. He was “so thankful” his chair was fixed. And he was “so thankful” to lie on the sofa and watch TV at night with Mom.
Cody has been engaging in this kind of dialogue on a consistent basis over the last couple of months. This is his attempt to converse. It is decisive, not arbitrary. Word association processes are involved. He makes eye contact. He directs his comment to the person it’s meant for. It isn’t the repetitious chatter we’ve been used to for so long. And we’ve noticed desires for other kinds of group participation as well.
We have enjoyed a great deal of time outdoors this summer. Bill and I often spend our evenings sitting in our picnic area enjoying the mild weather, watching wildlife, talking about our day and having a cold beer. Meanwhile Cody revels in roaming around at will, having a Popsicle and giving new names to all the bugs.
Recently we noticed we had to watch where we put our beer and where Cody was in proximity to it. He became very adept at sneaking around and snatching it up to gulp it down before we knew it. While he is 27 years old and I would have no objections to his drinking responsibly, I’m unsure of what effect the combination of alcohol and his medications may have on him. And yet I hated to deny him what is considered by many to be a pleasurable and social activity. So Bill bought some non-alcoholic beer. The bottle is similar in appearance to that of the beer we drink and the taste is close enough for Cody’s liking. Cody was elated that he could now participate in this activity with us.
Many people believe that people with ASD lack the capacity to have social desires. Having spent 27 years raising my own son who is on the spectrum and four years working in behavioral health, I’m finding that statement to be untrue. Just because a person may not show they have desires to be social doesn’t necessarily mean they don’t have those desires. Sometimes it’s up to others to help them find ways to channel in to what is a hidden capacity.
Confession time: I love helping people with de-cluttering projects. In fact, I'm usually the initiator, the one who asks my parents, “What closet is causing you stress this time?” During my most recent visit, Mom asks that we de-clutter the kitchen hutch, a repository for papers and paraphernalia. I pick up a stack of cookbooks, and we dive in. We're moving through the shelves at a brisk pace until we come to a box stuffed with business cards. Out go the ancient dental appointment reminders, the outdated salon listings, an old pair of purple reading glasses a long-ago house guest left behind. And then we come to a cream-colored card.
“Oh, the Eden Institute in Princeton … I can't throw this out,” Mom says.
“Okay … why not?” I ask.
“That's where we went for Willie's diagnosis … it's the place with the waiting room you remember, the jungle gyms and the high ceilings you wrote about as your first memory. That's where we learned that Willie had autism. Or, well, what was then PDD-NOS.”
“Ohhh,” I say. I'm holding the card differently now. Until this moment, I've never known the name of the place that comprised my first memory. The Eden Institute: the place where receiving a mouthful of knowledge changed everything. It's a fitting name. And avid de-clutterer though I am, I understand why Mom wants to keep this card. It's a piece of our family's history, a tiny placeholder for a huge turning point in our life together. “I get it. Okay, this one stays.”
Near the bottom of the stack, we come upon another card I don't recognize. I read out the unfamiliar names, and ask, “Who are they?”
“Oh wow,” Mom says, “I didn't know I still had this! This is the card from the people who prayed for Willie in the Dallas airport. You were there, remember?”
“Wait, what? I don't think I know this story,” I say.
“We were flying home to New Jersey from Arizona after visiting your grandparents, and it was just the three of us, because your Dad had to go back earlier for work,” she starts out. “And we had a long layover, so I was just trying to keep you both entertained until our next flight. You were both quite young, so it couldn't have been that long after Willie's diagnosis.”
She pauses, reflecting. “I'm not sure if that was the same trip when Willie climbed onto the luggage carousel and rode it around at the baggage claim and the security guards came over to us, but regardless … it was stressful.”
“And then what happened?” I prompt, even though I'm actually starting to remember.
“Well, as we were waiting for our flight, this couple introduced themselves and told me that they felt led to pray for Willie. I felt a bit uneasy at first, wondering if they were scam artists wanting money or something. But fortunately, it wasn't like that. They genuinely wanted to pray for your brother. I remember they told me that Willie's life was going to affect many people, and that he would help others to know God. They just …”
Her voice catches. “Well, they just encouraged me. They helped me feel … hopeful.”
The memory comes back to me as she speaks. I don't remember very much, but I recall my mom's tears. And I remember—even at a young age—feeling relieved that somebody seemed to be taking care of my mom, who was working hard to take care of us.
“This card is a keeper … it makes me happy just to see it,” she concludes.
“Good enough for me,” I say. And it is.
I think to myself: When it comes to religion and concepts of God, there's so much potential for abuse and conflict. But there are also people in airports praying for parents of young children with autism, people helping moms like mine to feel hopeful and less alone. And that's a miracle to me, that mom is still being encouraged by strangers from 20-plus years ago.
There are ripple effects present in the smallest acts of love, and for that, today, I give thanks.
Once you have located a potential place for an individual with autism to work, the next step has be the most difficult one because it could mean the difference between whether or not the individual becomes employed: talking with the employer. Not only must you explain to the employer what you do and what the service provider does, but you must also sell the employer on hiring an individual with autism to work for them. Here are some things that might help you in speaking with an employer and also some things to avoid as well.
When speaking with an employer, the first thing is to make sure you are speaking with the person who can make the decision regarding hiring the individual, There is really no point in having a conversation with someone who has nothing to do with the hiring process. A good thing to do is to start from the top, and work your way “down the ladder” until you can speak with the right person. However, you do not want the “higher level” people doing your work for you. Ask for the right person’s contact information, or to leave them your information. Never ask anyone to pass along contact information because the other person may be busy or it could get lost.
Once you have made contact with the right person, make sure they have the time to speak with you in a meeting and not over the phone. Face-to-face meetings make everything more personal. Set up a meeting time that works best for the employer and you. Don’t just work around your schedule, work around both schedules to be sure everyone has enough time. Once a meeting is set up that works for all parties involved, it becomes time to work on what will be said during the meeting. The best thing to do is to start out with one or two sentences about what you do. The main thing to remember is you are not trying to sell yourself to the employer; you are trying to sell the individual. It’s a good idea to avoid sounding like a temp agency; employers are not going to hire someone if they think the person can only work two or three months at a time. I advise using the “K.I.S.S. Method” (Keep Everything Short and Simple), because if you start rambling the employer might get bored and lose interest all together.
It can be useful to encourage the employer to start talking. Ask the employer a question about what they are looking for in an employee, how you could prepare the individual to work at the jobsite, and what they would like the individual to do there. The important thing is to let the manager speak and to listen to them the entire time. Some of the common barriers to job placement for someone with autism is that the employer already works with another agency, that they have preconceived ideas about working with someone with disabilities, or that they are rushed and simply ask you to leave a card or brochure. It can be useful to ask the employer if they have had any experience with someone with a disability or even someone with autism in order to get them focused on what autistic adults have to offer as employees.
If you’ve tried your best to find a placement and it doesn’t work out, just know that there many places out there and keep trying. Don’t assume that one “no” means that the autistic adult isn’t employable. Keep trying—persistence often pays off!
So, I was talking with one of Reilly's doctors about his serious romantic relationship, and potential hazards of sexual activity among young adults with disabilities. What, I asked, can we do to keep him safe? Is vasectomy an option?
Nope, said the doc. “Well, what CAN we do,” I implored. “Tell him to go to www.bedsider.org,” he said. I immediately put it into my Google machine, and was a little surprised, and then awed, that this retirement-age physician even knew about such a site, much less recommended it to his young adult patients. It's a no-nonsense, down-to-earth, judgment-free website that gives teens and young adults the medical and practical information they need to stay safe while enjoying an active, normal sex life. No preaching, just teaching. No guilt, no shame. It's not a website geared especially for a disabled population, but it's easy to use and helpful with not only sex and contraception questions, but some thorny relationship issues, too. (According to the website, “Bedsider.org (Bedsider) is an online birth control support network for women 18-29 operated by The National Campaign to Prevent Teen and Unplanned Pregnancy, a private non-profit organization.” Although its primary audience is women, it provides information for men as well.)
I'm guessing there are a lot of parents, of neurotypical teens as well as those on the spectrum, who would be shocked and horrified that such a thing exists. One parent I talked to recently was in complete denial about her daughter's sexual activity, until it hit her in the face. She felt she had sheltered her daughter her whole life, only to have her go away to school and discover sex. She wondered if she should withdraw her daughter from school, keep her at home where she could be safe. She thought about putting her daughter on the Pill, but didn't want to “encourage” the sexual activity. I understand that sentiment, and her fear and worry. But keeping our children from experiencing the world isn't preparing them for independence. All we can do is to give them the tools they need to keep themselves safe. Then hope and pray it works. Just like with our neurotypical kids. With a lot of kids on the high-functioning end of the spectrum, we parents really have not much more control over their actions than we do our typical college-age children. Yes, our ASD kids are more vulnerable in many ways. But they have the same desires and urges that everyone else has, and, I would argue, the right to pursue as independent a life as possible.
In Virginia, where we live, a young woman with Down Syndrome recently challenged her parents' request for guardianship and prevailed. Her parents had asked the court for the right to make medical decisions for her, as well as to decide where she would live and who she could socialize with. The judge ruled that 29-year-old Jenny Hatch, who has an IQ of 50, needs some guidance with those decisions in the short term, and awarded temporary one-year guardianship to a couple who were Jenny's choice. Their guardianship apparently would be less restrictive than her parents'.
It's a reminder that, though we have a young adult child with disabilities, he's more normal than not. And we can't keep him in a bubble for the rest of his life. It's scary, but important, to encourage his independence. Somewhat surprisingly, Reilly seems to get that we don't want to control him, we only want him to be safe.
As with so many life problems, there are no easy answers. A Google search turns up lots of questions about things like vasectomy for young men with ASD, but few actual answers. Everyone feels your pain, but they're not sure there's a lot you can do to protect sons without violating their rights. The best bet seems to be very concrete, nonjudgmental sex ed. Parents, educators and therapists all need to accept and respect the innate sexuality of young people on the spectrum. Though they may seem childlike, they aren't children. It seems to be possible for many on the spectrum to enjoy fulfilling sex lives, and some are even raising families.
I don't know if any of my research into the subject has eased my anxiety. It has broadened my view somewhat, and made me start to look at Reilly not as a child with disabilities, but as a young man starting to find his place in an adult world. He's making some mistakes, and, I think, learning from them.
Now I'm going back to bedsider.org to read more about Frisky Fridays.
Last week, I wrote of my unusually optimistic nature when it comes to Cameron. This optimism was slightly foiled by a less than glowing review of his recent summer employment. Unfortunately, my declining optimism has spilled over to Cameron’s academic future.
Cameron has just completed a driver’s training course at a local community college. This course is unique in that it’s a course specifically for students with disabilities, and it’s taught by a special educator. As required in the course description, I attended the first day of class with Cameron, so that I could learn more about the requirements of being a mentor driver. This was the first time I had attended a full class with Cameron since he was in primary school. My experience that day in the classroom with Cameron altered my expectations for his postsecondary education.
I sat directly behind Cameron, whom I positioned right in front of the instructor, in the first row. I found myself tapping Cameron on the shoulder each time the instructor directed the students to retrieve a certain form from the provided folder. I found myself being one of “those parents” by filling out one of Cameron’s forms for him. (I cringed when the instructor caught me in the act of completing that form.) Even with just a view of the back of Cameron’s head, I witnessed his focus, which was meager at best, deteriorating to the epitome of distraction. And there, before my eyes, flashed the images Cameron auditing credit courses in community college, and gaining some insight from the course material without the pressure of receiving course credit. Yeah … that’s not likely to happen.
To add insult to the injury of my realization, I received a text from Cameron shortly after he had left for class one day last week. He had forgotten his course material, and asked me to bring it him on campus. And, while I was at it, could I also bring him something to write with? Really? I sighed, and contemplated the courier fee I would charge him for making the journey to campus for him ... Except, I was unable to locate the missing folder. Cameron found it in his desk when he arrived in the classroom. Organization and being prepared for class have never been areas of concern in Cameron’s academic history. Now that he’s a year away from postsecondary education, he’s all of a sudden struggling with the basics.
I really had not considered how difficult the transition from high school to postsecondary might be for Cameron. And I’m not sure what I can do to better prepare him for that transition. If he were to take courses at a community college, he’s going to be required to sit in a classroom for more than the 50 minutes of his high school courses. Most classes won’t meet every day, so there will be a different schedule depending on the day of the week. Not that I already had Cameron’s postsecondary situation nailed down, but now, after this driver’s training experience, I suddenly feel at a loss as to where to even begin. Apparently, I’m not the only one feeling the pressure. Cameron’s hyperactivity level reached new heights these past few weeks. When I asked him about it, he said it was because of the commute on public transportation and the three hours in class. Good for him for being able to identify the stressors. But … if one class is stressing him out, what does the future hold for him?
Self-advocacy can be very interesting. It’s given me the ability to advocate for a cause that is very close to me on a personal level. With the help of organizations such as the Autism Society and Autism Speaks, I have learned to build my voice in our autism community. For the last six years I’ve been focused on becoming an advocate for persons on the spectrum. Three years ago Senator Robert Menendez (D-NJ) recognized those self-advocacy skills in me.
Senator Menendez saw one of my posts while I was interning for Autism Speaks and reached out to me. A few months later I was completely stunned when his office said he wanted to see me in Washington. I literally thought it was a joke the day I got the call. I was in complete and utter shock. A few days later I was on my way to Washington D.C by Acela train. During my visit I didn’t know what to expect. When I finally got to his office, he greeted me with warmth. He showed me around his office and then took a seat and let me share my perspectives with him. After we spoke for a while, he asked about my opinion on public policy! I was amazed. The conversation led to the discussion of the Combating Autism Reauthorization Act which would provide increased federal funding to help those with autism.
Once the day was done, I thought that was probably the last time I was going to see the Senator. A year later the CARA act passed. That was when I got the next call. He wanted me to speak on the day of its announcement in my hometown of Jersey City! We’ve kept in touch ever since. Just three weeks ago, the Senator gave me another opportunity to appear with him and speak as he announced the AGE-IN Act, new autism legislation he is sponsoring to help adults like myself succeed. This legislation is focused on helping with the challenges that young adults with autism deal with when they “age out” at 21 of the public school systems supports.
Through my experiences with the Senator I’ve been blessed by his generosity. The speech that I gave most recently with him was one I will remember for the rest of my life. In my 10-minute speech I got to share how I met the Senator and how he has become an influence not only in my life but the lives of countless young individuals with autism in New Jersey and throughout the country. In my speech I also referenced the need for supports. I told the audience that the time has come to change the conversation from “children with autism” to “people with autism” when it comes to services. I would now add that we have to be ready for all of these children as they reach adulthood.
This message is something I’m grateful I’ve had a chance to tell to local and national audiences because of the support of the Senator. Moving forward in my mentoring I hope to use the opportunities I’ve been given to create other opportunities for young adults to have their voices heard too. I hope this leads to a stronger and more aware community for everyone.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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