Isn't it delightful when your own words come back to guide you? Since this is the final edition of “Leaving Normal” for 2013, I spent some extra time pondering what encouragement I might offer to autism families and fellow siblings. And surprisingly enough, I found the answer I needed in a prior column. This past April, I wrote a column entitled, “Awareness All Year.” In it, I assigned each month an autism awareness task … each month, that is, except for December. This month's “assignment”? “Take a break, rest, and enjoy the holiday season with your sib. Your presence is the greatest gift you can give.” I've been thinking about what that means, to give the gift of presence. Here are a few ideas I've put into practice and found helpful:
Go “hands free.” Personally, I've found this mantra a potent cure for my addiction to multitasking. The term was popularized by Rachel Macy Stafford of Hands Free Mama; in her words, the heart of a hands free practice is, “... to let go of daily distraction and place [my] focus on someone or something meaningful.” For example, I change my relationship to technology when I'm visiting my family's home. Often, I choose to silence my phone and leave it in my purse in order to be fully present. I try to enter into my brother Willie's areas of interest; this past Thanksgiving, I sat and watched "The Jungle Book" with him for half an hour. True, it can be tough to resist the temptation to do something else simultaneously (and I've certainly seen enough Disney movies in my time)! Yet I occasionally watch with Willie because spending time with him is worth it. The same principle holds when we're connecting at a distance. Though the siren song of multitasking often calls out to me, I close my browser and to-do list file so that I won't look elsewhere while we're talking on the phone or on Skype.
In turn, I've noticed that I'm more aware of my screen time when I'm staying with my family. Willie gets agitated if he watches online videos for too long, so our parents monitor his computer use. Since he can't remain on the computer for hours on end, he's gained the ability to transition to a new activity. (Alas, I can't always say the same for myself!) Watching Willie walk away from the computer after a set period has been a helpful reminder to limit my own screen time.
Use your words to connect with those you love. It sounds so simple, but it can be surprisingly difficult to share feelings and experiences with our family members. As fellow AA16 columnist Rose Donovan writes in Using Our Words, “... There's a lot that families like ours don't say to each other. We assume a lot, and often we're just too busy living our lives to check in with each other and share our perspectives and our feelings. We're in it together, yet isolated in the experience.” I can relate; when Willie first started struggling with aggression and self-injurious behavior, I felt the need to “be strong” and put on a brave face. I'd try to hide feelings of sadness and hurt, tucking myself away in a closet when I needed to cry. Now, I'm making an effort to let go of that pretend strength. Being Willie's sister has taught me that being vulnerable and honest takes the most courage.
Remember what's precious. Since Willie struggles with self-injurious behavior, our parents have created scripts to remind him not to hurt himself. If he bangs his head, they'll say, “Willie, is your head worthless?” He'll reply, “No! My head is precious,” and sometimes, that reminder helps him stop. Likewise, if you find yourself overwhelmed by responsibilities during this season, remember: Your head (and your sanity) is precious. If holiday tasks are stressing you out, try simplifying. You might send digital holiday greetings rather than printed ones, or shop online rather than braving the mall. (Better yet, shop online and support autism employment at the same time!) As 2013 draws to a close, choose to protect what's precious: your head, your heart, your presence.
My Thanksgiving vacation in Florida was very relaxing and fun. My family and I greatly enjoyed soaking in the Sunshine State’s copious amount of refreshing rays, a nice change of pace from the brutal winters we typically find ourselves in. We had a great time staying with my uncle and also enjoyed some neat experiences including walking the beach on the Gulf of Mexico, a jaunt through a luxurious garden where we saw birds that I have never seen up close before like a crane, and a tour of some unique shops including Hulk Hogan’s beach shop. I love WWE, so visiting Hogan’s shop was a highlight for me. The icing on the cake, though, was the two days we were able to spend at Disney World, where I picked up some valuable insights into my life that are still lingering in my mind.
One aspect of my time visiting Disney that left a strong impression on me was how I continue to learn to cope with large crowds. I had purchased two guidebooks on Disney World to help me plan our trip, and I had made sure to schedule our visit for days in which, according to my guidebooks, the parks would not be very crowded. Even though we did go on days when the parks should not have been at peak capacity, I was surprised and a bit put off to see such a large number of people as we entered the main gate. The Magic Kingdom in particular was densely populated, a proverbial sea of humanity.
There is a part of me that still cringes slightly when I am in the middle of a crowd. I find myself anticipating the uncomfortable feeling that always comes over me when I am surrounded by people, especially if I feel I am packed in like a sardine with little sense of direction. For me, it becomes especially pronounced when I am literally brushing up against other people’s shoulders and the noise level is high, a situation which played out seemingly everywhere we went during our first day.
When I was younger, I would lash out at people who were too close to me by either biting them or pushing them away from me. I felt closed-in upon, and I was unable to handle all the stimuli all at once. As I have gotten older and with the help of some great therapies, I have been able to handle being in crowds a great deal better. So, even though I had the same initial feeling I always get when faced with a large gathering, once I realized that the crowds would likely last all day, I decided to simply “go with the flow” and enjoy my time in the park like everyone else was doing. I had a much more positive experience as a result. I was greatly relieved, though, when, during our second and final day at Epcot, the population was much more spread out.
I have also continued to reflect on the art of proper scheduling, a subject which has been on my mind quite a bit lately. During my first day at the Magic Kingdom, I was enamored with the idea of an interactive trading card game I had read about in one of my guidebooks. Playing meant that we needed to move from one game “portal” to another in the park to complete the game. It sounded like a really cool idea to me, and I did not want to let go of the idea of carrying through with the game to the finish. Unfortunately, this meant that my family and I were just rushing from one position to another in the park as I looked for the next “portal” to continue the game. My parents had to step in and explain to me that I was missing out on the activities I had originally chosen to do because I was not taking in the rest of the park’s attractions by just doing this one activity. My parents also explained that we could play the card game the next time we head to Disney after we have experienced more of the overall attractions, which helped me to break away from it. So, we decided to get back on track and participate in the rides and shows I had initially selected. Even though a bit of time was lost, I had much more fun this way and made many lasting memories.
One last important concept I took away from my time at Disney World was a greater sense of personal responsibility toward the earth. Our second day was spent at Epcot, specifically the “Future World” section of the park dominated by Spaceship Earth (that giant golf ball you always see in the TV commercials). The attractions that impressed me the most focused on making the world a better place for all creatures. A portion of the park doubles as an experimental farm in which all manner of plants are grown, an ongoing effort to improve the world’s food supplies. Several of the attractions also carry the message that the most effective changes and most rewarding experiences come about when one uses their own imagination to the fullest to make the world better. That is a philosophy I live by already, but I was glad to see it affirmed so strongly. I plan on continuing to do my best to be responsible for myself and the world around me.
Disney World is a place of dreams, inspiration, and laughter. I found all three in abundance and I am glad I was able to share them with my family. It was beyond what I thought it would be and offered many surprises I had not expected. I had a lot of fun, I learned a lot, and I want to do it again!
Every year at Thanksgiving, there comes a moment after dinner when I need to escape.
I should say up front that Thanksgiving is my favorite holiday. I revel in it. But no matter how much fun we are having, no matter how full my heart is with good will and satisfaction and joy, I reach a point when everything becomes too much. An aural assault. I feel an overpowering urge to step outside into the November night air.
Each year I make the same excuse to myself –I just need to shake out the crumbs from the tablecloth—and step onto the front porch. The blast of cold air on my face is bracing. Reviving. Sound falls away and the world goes silent.
This year, as I took in great gulps of wintry cold air, it struck me: This is how Mickey must feel, when he reaches the tipping point of sensory overload and says, “I’ve had enough.”
When Mickey was 8 and Jonathan 13, we flew to Arizona for our niece’s bat mitzvah. Mickey fidgeted but managed to sit through the religious service, even singing along to familiar songs. At the end of the ceremony, we moved across the hall into the banquet room. We slammed up against a wall of thrumming music and flashing lights. Mickey flung himself to the floor and clutched his hands over his ears. People stared. Then they stepped over him.
Embarrassed, I tried to coax him up. He wouldn’t budge. “This isn’t going to work,” my husband Marc said. “I’ll go back to the hotel with him.”
“But your family is all here, I don’t want you to miss out,” I said. “You and Jonathan should stay. I’ll take Mickey back.”
We returned to our spacious, serene suite. I called room service and ordered Mickey’s favorite meal: a burger and fries. After dinner he played with his Game Boy. I read a novel. We were both perfectly happy. The truth? I don’t like loud parties either.
Having a child with these sensitivities opened a window into myself. I always hated crowded rooms. Strobe lights. Roller coasters. I thought it was a character flaw. I didn’t realize it was just the way I was wired.
Just the way he is wired.
“I’ve had enough.” He says it adamantly, often while the rest of us are still having fun. For years, I cajoled. Reasoned. Even bribed him. I wanted him to sit longer at religious services. Stay later at the party. Last through the movie.
Did I have my own agenda? Was it more about my desires than his? Or am I beating myself up too much? Mickey has always resisted anything unfamiliar, whether tasting a vegetable or trying an art class. I believe it’s my job as his parent to expose him to as many new experiences as I can. I want to open the richness of the world to him. When is it okay to push? How hard? When to pull back? It’s an intricate dance.
It has taken me a long time to understand that he doesn’t mean to be difficult or self-absorbed. He is simply advocating for what he needs. Just as I need my moments of respite and retreat, Mickey does too.
Which is a good thing. A marvelous thing, in fact.
Standing there Thanksgiving night, inhaling the cold, restorative air, I shook out more than tablecloth crumbs.
Cameron traveled to see his father this past weekend. Cameron has been flying independently for a number of years now, but I’m finding there are still ways I can allow him to flex his independence when it comes to travel. And there are still ways in which I can be supportive but give Cameron the opportunity to do things for himself.
In the past, I have always checked Cameron in for his flights, printed his boarding pass, and given him the details of where his seat and gate were. This time I showed him how to use Delta’s app on his phone, and instead of printing the boarding pass, I showed him the electronic boarding pass option. This boarding pass popping up on his lock screen the day of travel annoyed him immensely, but at least there wasn’t a chance of him not being able to access the pass when he needed it.
Cameron has long been responsible for packing his own bag, and has rarely missed a beat with this task. I was picking Cameron up from school, and then taking him straight to the airport, so he packed his bag the night before. When it was time for me to leave, I didn’t. I was in the middle of something so I was eating into the whopping five-minute cushion I had given myself. I went to get Cameron’s suitcase from his room, and there it sat … wide open with a huge pile of clothes wadded on top of it. I tried to close the suitcase around the wad, denying my compulsion to organize by article of clothing type, but the bag wouldn’t close. With a heavy sigh, and a mental note to point out this infraction to Cameron, I folded and stuffed, and got the case closed. I was in the car five minutes behind schedule. No problem. I like a challenge.
I got on the Beltway heading towards school, in the opposite direction of the airport. And in that direction towards the airport, traffic was at a standstill … mile after mile, as I went north, more people going south were going nowhere. This didn’t look good. My five-minute cushion times 10 would not have helped me in this situation. I arrived at school five minutes late and as Cameron got in the car, I discussed my displeasure with his idea of “packing.”
His response was, “Sor-REE.” (Most moms might have taken the bait of this typical snarky teen response. I’ll take anything typical from my not-so-typical teen I can get.)
We started our stressful journey to the airport in bumper-to-bumper traffic. I had talk radio on in the car so I could keep abreast of the traffic developments. Cameron donned his earphones. We were in silent agreement that discussing the probability of him missing his flight would not help matters. I tried to come up with a battle plan: Park and go in with him so I can be there if he needs to reschedule his flight? No, that would take too long. Drop him off and then park? I then had a “be strong” parenting talk with myself. Cameron needed to do this on his own. If he missed his flight, I would be on the other end of the phone, with advice on what to do next, but he needed to be the one to handle this.
I navigated around the worst traffic, and we were within five miles of the airport with 40 minutes to spare. I had just started to breathe a sigh of relief when traffic stalled again. I did my best at coaching Cameron on asking a TSA agent for permission to cut in line if there was a long wait at security. I realized how hard it is to give instructions when facing uncertain circumstances. How do you prepare for the worst when you aren’t aware of what the “worst” is? The best I could do was tell Cameron to go straight to the gate, no stopping at the men’s room, and text me when he got there.
Cameron made his flight, and my blood pressure is almost back to normal. Of course the lesson learned here is all mine: I need to listen to that inner voice more that tells me to let Cameron handle more on his own, without me nicely teeing everything up for him. And I’ll get back to using my stress energy for my Christmas shopping list, and leave Cameron to ask for help if and when he needs it.
Last Monday I gave a lecture at Children’s Specialized Hospital in Mountainside, NJ on “Transitioning with Autism from Pediatrics to Adulthood.” This was the longest presentation I’ve ever done in the past two years as a motivational speaker. In the presentation I provided an overview of my life growing up on the spectrum, but spent the majority of the time discussing transitional services—or lack thereof—in housing, medical insurance and employment for adults with autism. I was thrilled with the experience! It was great to be greeted with passion as I got to hear from the doctors and professionals about the children they took care of and their interaction with the parents of their patients.
Then, at the very end of my presentation, I was taken aback a bit when the question-and-answer session started. One of the questions that stumped me came from a physician who asked, “Kerry, what are some of the helpful tips your physician gave you for the children we work with?"
I kind of just stared blankly for a second while trying to find a way to respond. I really didn’t know what to say. It wasn’t that I couldn’t have discussed some of my experiences, but it was a question in many ways that just went over my head. I took a moment, took a few sips of water and asked my mom (who came with me) if she’d like to answer that question. I was lucky to have her there that day as back up for that specific question. She spent some time talking about the therapies and interventions that worked well for me.
The event ended about 20 minutes later with greetings from members of the audience and overall positive remarks regarding my lecture. As a self-advocate, many times I use my experiences growing up as my go-to answers and more recently what it is like to become a young adult with autism. I realized after this event I’d like my answers in the future to reflect more of what I have learned from interactions with my mentors, autism groups, and other related organizations to become a more knowledgeable speaker.
I need to come to understand that the more I start thinking about “we” and focusing on the entire spectrum, the more knowledgeable of a speaker I will be for audiences. This is something I could see being beneficial for other young self-advocates as well. The time has come to try to expand what we feel comfortable with and get other perspectives into autism. Autism is after all a “spectrum disorder” where no one individual is the same as the next.
After the event, I wondered for the first time about possibly getting a doctorate in Autism Studies one day. I want to share my knowledge not only with those who’ve experienced autism but with experts and professionals in the field like the people I met at Children’s Specialized Hospital. I would even be interested in getting involved with therapies I had while growing up such as speech, physical and occupational therapy. Who knows what the future has in store! But I do know I’d like to learn more and then use that knowledge to benefit others. At the end of the day, making a difference in the lives of others will always be the key to my success.
Victory is ours! I've just received a text message from my mom, alerting me to the fact that she and my dad are signing their will and Willie's special needs trust papers this morning. I'm proud of them for completing this important task; it isn't easy to set up a will, to sit at a desk and contemplate terrible loss and worst-case scenarios. In fact, this past September, my parents actually asked me to help them overcome their procrastination and aversion. They requested that I hold them accountable to making an appointment with a lawyer. (I'd taken the lead to initiate the topic months earlier, so they knew that I wanted to help facilitate the process.) Today, I'm both relieved and gratified; I've been looking forward to this moment ever since we began the conversation about special needs planning.
Hearing the news brings me a specific kind of happiness, and my hope is that, by sharing it, I'll encourage fellow siblings and family members to take similar steps. (As I mentioned in a prior column, a 2008 Easter Seals study noted that only 38% of autism parents have made wills, and just 17% have set up special needs trusts.) This happiness comes with overcoming procrastination. It's the thrill of doing what writer Gretchen Rubin calls, “tackling a nagging task,” and it's surprisingly satisfying. Beyond that, there's also a sense of freedom and expansion. Knowing that my parents have a will and trust in place is liberating, as I believe it would be for any special needs sibling who has lost sleep from stressing about the future. (Imagine suddenly assuming guardianship in the midst of intense grief … and on top of all that, having to deal with confusing and complicated paperwork to get your sibling's coverage and benefits sorted out.)
Now that these practical provisions have been made for Willie's future, I'm better equipped to focus on the present. By putting myself in the uncomfortable position of nudging my parents toward creating these documents, I've added to my own contentment. As Rubin writes in “Happier at Home,” “Happiness doesn't always make me feel happy. Often, my happiness is best served by undertakings that make me feel anxious, uneasy, frustrated, or stupid.”
In other words, happiness can be complicated … and that's what I understood when I helped our Mom clear out a drawer of “Willie” paperwork over the Thanksgiving holiday. We often take on decluttering projects together, and this one was especially appropriate, given that I could help her decide what to toss. In my former role as a program director for a caregiving organization, I led an annual process of culling individual homecare files, so I have a sense of what ought to be kept. (Hint: Keep all personalized correspondence from Medicaid and Social Security.)
At the very back of a file, I glimpsed Willie's diagnosis papers. A shiver ran through me; being in the waiting room of the diagnostic center is, after all, my first memory. We didn't read through the report, but simply spotting the cover page was illuminating. As the paper noted, Willie was diagnosed when he was 3 years old, not 2, as I'd previously thought. (That made sense; in 1990, when he was diagnosed, autism awareness was nothing like what it is today.)
By the time we'd completed the task, I felt an overwhelming sense of—what? Compassion? Fatigue? Awe? The papers in that drawer represented years of doctor's appointments, financial management, medication changes, and more. The enormity of it washed over me, and I realized anew that caring for one person means a lot of paperwork, a lot of time, a lot of love. Impersonal as the documents were, I couldn't help but be moved. And what touched me most was the sight of our Mom's face—lighter, less weighed down. In letting go of old papers, I could see that she was more empowered to care for Willie. And that's how I feel today, having heard the news about the will and trust: lighter. With this lightness comes a sense of resolution, even peace. It's a small thing, yes, but perhaps peace on earth can begin with peace of mind.
It is that time of year again, when families get together for holidays and people start Christmas shopping. It is also that time of year when a lot of stores start hiring people for seasonal work. For someone working as a Supported Employment Manager, this time of year can be both a good thing and a bad thing, just as it can for the individuals on my caseload. For many people looking for employment this time of year, it is easy to understand that seasonal work is temporary. For me, it is hard to explain to someone on my caseload that they are only working at a job for a few months and then not working again after the season is over.
Some of the other managers that work with me have individuals that do summer work at farms and golf courses, but these individuals have been doing this work for years now. They have somewhat of an understanding that their job is seasonal and after it is finished we have to find something else for them to do. For someone whose first employment is during the holidays, it is a little harder to explain to them the nature of seasonal work. One of the individuals on my caseload used to work at a well-known warehouse store, but because of budget and economy problems he had to be let go. The job developer had given this individual the opportunity to return to this store as a seasonal worker because the store loved having him there. However, this causes some complications. Although his current job is a full-time, year-round position, the individual wants to go back to the warehouse store. Fortunately, the year-round job is a contract job, so taking some time off to do seasonal work won’t jeopardize that placement.
The major dilemma is that if this seasonal position keeps coming up, it may become a problem to keep pulling the individual out of the steady job to go back to this store. But who am I to tell an individual that he cannot go to job he wants to do because it is only seasonal work? That is like someone telling me I cannot go play football in the NFL because it is only a few months out of the year, even though it has always been a dream of mine. Needless to say, the individual is currently working at that warehouse store and loving every minute of it.
But what if someone does not have another job to go back to? What if you have to explain to an individual that they are not going to work after January? Rarely do stores to hire seasonal employees as full-time workers. Sometimes it happens, but not often.
I guess we just have to try to explain in a way the individual can understand that they did not do anything wrong to lose the job and that it was a temporary placement from the start. It is my job after that to find them something else to fill that time, whether it be another part-time job or job training. And it does feel good to see the individual get a paycheck, even it is only for three months out of the year.
My daughter wrote a monologue for an acting class about growing up with a sibling on the spectrum. It made me cry. It made me realize there's a lot that families like ours don't say to each other. We assume a lot, and often we're just too busy living our lives to check in with each other and share our perspectives and our feelings. We're in it together, yet isolated in the experience.
The germ for this monologue probably started when I wrote a column about Brigid, my middle child and only daughter, and how her career choices seem to be related to her status as a sibling with a special needs brother. The things I said in the column surprised her as much as some of her choices surprised me. I hadn't ever really talked to her about her motivations. I'm not sure I ever expressly said how proud I am of her and why. I mean, I 'm pretty sure she knows I'm proud of her, but I don't think we ever had a specific conversation about how so much of her life was influenced by her brother and how she's using the experience in her budding adult life.
So, the monologue. She talks about friends laughing about a funny video on YouTube in which an adult man is having a meltdown. She recognized the characteristics of autism in the man, and wasn't as amused as her friends. She reminisces about her little brother's meltdowns, and how it felt when outsiders witnessed them. All things we never really talked about as a family, though I see now we probably should have.
When you're living the life, it's hard to step back and reflect. You're doing the best you can, but sometimes it doesn't feel like it. You're sure that if you just looked a little harder you'd find the thing that could make it all better, or at least a little better. You're so caught up in your own experience that you don't do as much as you could to help the others going through it with you. You also don't tell others how they could help. You assume that they see things the way you do, that they understand what you do.
And by "you," I mean me. Maybe all the other families do a better job of communicating. But maybe not.
In the monologue, Brigid acknowledges her brother's growth and progress. She acknowledges the hard job of parenting a child with ASD. Things she hasn't expressly said to me, probably assuming that they are things that "go without saying," as we all know them to be true.
I spent this past weekend in New York with Brigid. She has a part-time job with a special needs theater group. The kids she works with, all teenagers with developmental disabilities, were putting on the show they have been working on all semester. I went to the show, sharing the experience with the families of the actors. I don't know these families, yet I know them. I saw a little bit of Reilly in each of the children. I watched the joy the parents felt watching their kids have a great time. I saw the joy the teachers and volunteers felt interacting with the kids. In that small, black-box theater, we were a family.
Words weren't necessary then. But sometimes, I think they are. We probably should use them more, even if only to validate the shared experience and the subsequent feelings. Maybe that is my resolution for the New Year: to use my words more often.
I’ve come down with an early case of the “Bah Humbug” this year. I can’t imagine why, but I’m very short-tempered these days. In spite of my inner voice coaching me to be cheerful and merry and show my fellow citizens tidings of joy, I end up immensely irritated by something an innocent bystander has done while I wait for my latte at the barista counter. Maybe I should try decaf? No … it’s more than that. I catch myself watching other grumpy people with scowls on their faces, wondering if I look like they do. I catch myself beginning to scowl as I start to worry about scowling.
I really want to be pleasant to others, make them smile, and possibly turn someone’s day around by a random act of kindness. So what’s getting in the way?
As I started to ponder my own funk, the recent news about oxytocin caught my attention. I remember hearing a radio story on the topic, and the autism link wasn’t what piqued my interest. What I honed in on was the real need humans have for socialization and the effect that socialization has on the brain. Cognitive functioning may be impacted by how we humans socialize. So maybe the Bah Humbug is caught by spending too much time alone. Maybe I’ve been spending too much time at home behind my computer, and not enough time in the company of others.
This experience with my own socialization woes has me thinking about Cameron’s social health. I wonder if the Bah Humbug I’m experiencing is similar to what Cameron experiences on an ongoing basis. Maybe, like me, Cameron wants to be the cheerful person who brightens a stranger’s day with a kind word, but his frustration tolerance gets in his way, and he shuts down at the first sign of annoyance. Maybe Cameron tries to suppress his snappish and snippy responses to people, but he doesn’t have the ability to edit his attitude before it’s too late. Does he reflect back on his poor social interactions, and wish they had gone differently? I certainly reflected back on the interaction I had yesterday with the insurance call center in my effort to get my daughter’s same-as-always, life-long medication refilled. Maybe, in hindsight, I shouldn’t have shouted at the representative when she suggested that perhaps this time the medicine was different when I asked why the claim was being denied. Sometimes things that are meant to stay in the thought bubble accidentally get said out loud. I’m afraid that’s one of the side effects of the Bah Humbug.
So the one benefit of my struggle with the Bah Humbug is that I better understand Cameron’s social challenges. I understand now what it’s like to want to be one way, and end up acting in an entirely different manner. It’s frustrating, to say the least. But does Cameron really want to be social? Or am I projecting my own desires for him? He’ll soon be at a point in his life where it will become abundantly clear. His potential move from home to join a postsecondary program will certainly give him the opportunity to grow socially. Let’s hope the Bah Humbug isn’t contagious.
Last Tuesday my sister Connie had to have a surgery.
When they wheeled her away, I went to the waiting room with my oldest sister, my brother, Bill and various other family members. While we were there my oldest sister’s work supervisor came into the waiting room to offer moral support and see how all was going.
The supervisor is a young mother of two boys, ages 8 and 9. The 9-year-old resembled Cody so much at that age it was uncanny. And as it turns out, he also is on the autism spectrum. I couldn’t stop staring at him. He had so many of the same characteristics and behaviors that Cody exhibited all those years ago.
My sister Pam had told me a little bit about this young woman and the challenges that she and her son were experiencing. Violent outbursts—aimed at both himself and others—were a problem. His predisposition to restlessness was very obvious. I could see the agitation growing in this child and the more fidgety he grew, the more anxious Mom became.
I watched how many times she turned her attention away from conversation to make sure her son was still holding it together. As time went on her glances in his direction became more frequent. Dad was there as well. It almost appeared as if Mom and Dad were taking turns watching the boys—that look of angst on their faces—the one that just speaks so loudly and clearly to the fact that these parents were on alert for that one spark that could light the fuse that would detonate the fiery explosion they were so dreadfully anticipating.
Then Dad confirmed my suspicions:
Dad: “Well we’re going to go.”
My Sister: “You don’t have to go just yet on our account.”
Dad: “No we need to go before the meds wear off.”
Mom: “We have this visit perfectly timed.”
How well I remember those days. Oh my heart went out to them!
How I wished I could have had a chance to talk to them about the struggles they were going through and to express my compassion and understanding.
Cody had many of those same battles. And while there were no meds that helped subdue those battles, what it did take was time, dedication, patience, and repetition of loving methods of discipline.
It took many reminders that he had to be in control of his behavior. It took reminding him over and over that outbursts would not achieve any goal he wanted to achieve. It took restraint to remain calm, but firm. There were times when Cody would go into meltdown mode and I would sit him on the sofa. For hours he would yell, cry, hit, kick and scream obscenities at me because every time he attempted to get down I sat him right back up there. And for a while that fueled the fires even more, but it’s what I had to do.
I would tell him in the beginning that when he could behave appropriately, and speak to me calmly and respectfully we would talk and then he could get down. Until then I sat in front of him and would not look at his face or speak to him. I deflected his physical attempts to lash out by blocking kicks and punches with my hands and arms. The verbal ones I ignored. After what seemed like an eternity he eventually became calm and we were able to come to a peaceable resolution to whatever it was that had set his rage in motion.
Was it difficult to do that? Absolutely! Was it exhausting, frustrating and heart wrenching? Yes, yes and yes! Did I want to just break down in tears? Oh yeah! But as the years passed these episodes began to happen less often. Cody hasn’t had one in years now.
Conquering those behaviors was by no means easy. There were times it took me to my knees. But there is hope through resolving oneself to help a child or even an adult overcome those behaviors with simple techniques like these. It does require great tenacity when it comes to simply standing your ground with love and determination. But for us, the amazing results were worth every moment of trial.
Here's what really gets to us about the holiday season. It's not the way advertisers assault us, though that's troubling. It's not the way radio stations insist upon playing the most grating seasonal songs they can get their hands on, though that's annoying. It's not even the pressure put on us by others—to send Christmas cards, to show up to holiday brunches, to decorate with splendor and style—though those obligations weigh on many. Instead, here's my theory: the real problem with the holiday season is what I like to call the disconnect. First, there are the surface disconnects, such as the disconnect between our table and Martha Stewart's table. Or the disconnect between our humble decorations and the neighbor's light show spectacular. But that's not where it really hurts, not for most of us. What really hurts this time of year is the disconnect between people. Be it distance or time or hurt feelings or simply atrophy, the disconnect between us is what stings. The disconnect between our relationships as they are and as we wish they would be.
Why? Because the holidays are a time of gathering. And I'm never so lonely as when I'm about to set off on a long trip to visit faraway friends and family. Thrilled as I am to reunite with beloved people, the thought also brings pain. On most days, I can push aside how much I miss them, how much I long for a sense of home and belonging. I can focus on my work, on tasks I need to accomplish. But during the holidays, it's harder to forget the distance between us. The cozy scenes on TV, the soaring holiday carols … we want to share these things with someone else. We don't want to watch “Home Alone” or “Little Women” by ourselves. We don't want to go ice skating or candle-lighting or tree-hunting or basement-foraging-for-long-lost-decorations in solitude. We want to participate in these activities together. Not just physically together, to be sure, but together in spirit, together in heart.
With this in mind, I'm thinking about an unexpected moment of connection I shared with Willie last week. On Black Friday, I woke early in the guest room of my parents' house. After a moment of disorientation, I registered the unmistakable sounds of struggle and loud noises coming from downstairs. Given my brother's history of aggressive and self-injurious behavior, my mind filled in the blanks: Willie is having a meltdown, our parents need help … though at this volume, he's probably roused our aunt and uncle, who are sleeping on the pull-out couch in the living room. That's unfortunate, but at least it means that our parents will have help. I rose slowly, trying to steel myself for what I might find downstairs. Willie's door stood ajar; his bed empty. I descended the stairs with a solid lump of dread in my stomach.
Imagine my surprise, then, when I found the family dogs, Chevy and Chance, scuffling and play-fighting. Confusion was soon eclipsed by relief: for once, it wasn't Willie going crazy! For once, he wasn't wrapped up in a rug, trying to calm himself. There was nothing to fear. In fact, Willie was in a fine—albeit sleepy—state when I found him. He'd escaped to the finished basement, curled up next to the space heater, and put on Disney's “The Jungle Book.” I sat down next to him, and he leaned right into me, ducking his head in the way that always speaks to me of trust. To be sure, I knew that he was cold, that he wanted to be closer to me in order to get warm. I knew that, but I also knew that this unarmored, early-morning time was a gift. And so we watched the movie for about half an hour before I headed back upstairs, humming along to, “The Bare Necessities” as I went. “Look for the bare necessities, the simple bare necessities, forget about your worries and your strife ...”
And for that time, I could forget about worry and strife. I could inhabit that pocket of peace, knowing that I'd received everything I needed and more.
By the time you read this, I will have returned from a week’s vacation in Florida with my family. I will have celebrated Thanksgiving with my parents and uncle and, if the weather permits, spent some time visiting Disney World. Before getting on the road, though, I was given the responsibility to complete the tricky task of scheduling what we would do at Disney. It is not a task that I looked forward to doing, but a bit of hard work on my part before I left with my family would mean a very organized schedule for us all and more time for relaxation when we reached our destination.
My parents had already figured out the dates when we would be traveling, where we would stay while traveling, how long we would stay with my uncle, and when we would head back home. They indicated that we would have three days to spend at Disney, leaving us the rest of the week to spend with my uncle, including Thanksgiving Day. Since our excursion to Disney World was mainly for my entertainment, my parents left it up to me to determine how I wanted to spend my time there. This decision was totally mine.
To say that I found this decision-making to be intimidating would be an understatement. I would be heading further outside of my home state than I had ever been, so I had a bit of anxiety to start with. Now I was in charge of planning our activities at Disney. In addition, it played into my ongoing concern of having everything in my life be in a perfect, uncluttered state, or at least as close to that state as possible. I have stated many times that I work best when things go smoothly and are organized, which is calming to me. However, I realized that forming a plan was necessary for our vacation to go well. I wanted this vacation to be as organized as the Disney parks are clean (not a speck of dirt or trash to be seen).
To make the planning process easier, I purchased two guidebooks on Disney World which contained very helpful information about the parks and their attractions. After reading both, I determined that it would be best for us to visit the parks earlier in the week in order to avoid the crowds and long lines. I then looked through the guidebooks and chose which rides, attractions, and other features of the Disney parks I would most like to check out. After much consideration, these were my choices: the Disneyland-like Magic Kingdom, the technologically-focused Epcot, and the movie magic of Disney’s Hollywood Studios. With the schedule we had worked out, we could spend a day at each of the three parks.
Finishing the schedule took some time to complete, but I knew that it was an important step to enjoying our time in Florida. It gave me some much-needed experience in determining how to best spend valuable time, a skill which I feel is essential to my life. I knew that we could not do everything during this vacation, so I had to figure out what I wanted to see the most this time around. For a person that loves everything Disney, I can tell you that I really had to consider my feelings regarding the features of each park to determine my choices.
Even though it took some time for me to do the research and choose from the many options Disney offers, I am glad that my parents gave me this task and included me in the decision process. Not only has it helped me to learn new skills regarding time management and vacations, I also know exactly what we will be doing each day because I was part of the planning. I feel glad that I put the work into my part to make this vacation possible, and I hope it will be enriching and fun!
First published on July 3, 2012.
“Annie,” I called, cupping my hand to the phone. “We are making no progress. I am so sorry.”
It was my second call to the school. We were late, very late, and I worried how it would affect Madison and our visit. The interstate had been shut down, rerouting us to a two-lane road that doubled our hour-long drive.
“I think you should go ahead and give Madison some lunch,” I told her. “Maybe we will just have ice cream this trip.” Hunger is never a friend when Madison is “brittle,” or prone to upset. And we didn’t need any more complicating issues given our delay.
Like many children with autism, Madison does not wait well. We tell her that I am coming for lunch just before I arrive. We’ve learned that if for some reason I cannot make it that day, the change in her schedule can be disastrous. So, “Lunch with Mommy” is never in the early morning schedule; it is only added after I call to confirm.
Schedule-based living, however, can be a tricky proposition. On the one hand, a schedule orders the day, the expectations, and is comforting to Madison who has difficulty with transitions. Knowing “what’s next” is sometimes all it takes to calm her. Yet, routine schedules can also create a false sense of predictability that does not allow for exceptions. And life is just not that predictable all the time. If the schedule is too rigid, we both become trapped, unable to respond to other opportunities.
Even though Madison has an intellectual disability, uses only scripted speech, and cannot read nor write, she understands far more than she shows. In her limited speech, her number one phrase is, “Schedule, please.” And her next favorite is, “And then.”
When her schedule is given to her, she will often prompt the speaker, saying, “And then” multiple times, until she hears an activity that satisfies her. On Tuesdays, although she has no concrete understanding of the calendar or time, she seems to sense my visit, often requesting “Lunch with Mommy” before I have called.
Although poignant, I realize the “Lunch with Mommy” is also a break from work. And, hey, who doesn’t like a predictable break from work?
So, how do we keep my visits a “treat” instead of an “expectation?”
“Broaden the activity,” said Dr. Kathy Niager, owner and Executive Director of Trellis Services, Inc., Instead of, “Lunch with Mommy,” she suggested redefining the time as “Family Time,” and offer Madison other options, such as a phone call to Mommy or other family member, looking at a family photo album, or making a card to send to a family member.
Perfect! Well, probably not for Madison, but at least it keeps some structure in her day—and flexibility in mine.
On that Tuesday, “Lunch with Mommy,” finally made it to the schedule board. But it’s nice to know that “Family Time” is a new choice that will give us both more options.
The search for a postsecondary program for a student like Cameron is not much fun. It’s actually pretty awful. In my case, this search has caused much anxiety. There have been many prime sleep-time hours lost staring at the ceiling, wondering what next year will entail for Cameron. It makes my stomach hurt to think about it, and yet it’s all I can think about. But as it turns out, the search is not the worst part of finding a program. Actually the worst part of the postsecondary hunt (so far) has been finding an ideal program, and now having to wait to receive the admissions decision.
After much deliberation with Cameron, family members, friends, trusted advisors … basically anyone who would listen, I’ve decided that the last program Cameron and I visited would be a great fit for him. Sure, there will be challenges, but what would postsecondary education be without challenges? This program checks all the items off the “must have” list, and I’m convinced it will be a tremendous growth opportunity for Cameron. But did I convince the admissions committee? Did Cameron’s surliness during the interview kill his chances?
I was discussing my conviction that this program was “the one” with my mother. And my mother, like no one else can do, brought me down to earth quicker than a pin to a latex balloon. All she said was, “It reminds me of how you felt about The Lab School.” (I envisioned it as a red balloon, flailing around my living room, landing in a tumbleweed of dog hair the vacuum missed.)
Ah yes ... The Lab School. This was the school that was going to be the perfect place for Cameron. We were relocating to Washington, DC from London, and The Lab School was going to put a smile on Cameron’s face each and every day that he entered their hallowed halls. Only Cameron wasn’t deemed an appropriate fit for their program. I later learned that The Lab School was a program for a vastly different type of learner than Cameron, so of course it was the right decision on the school’s part not to offer him a coveted spot. But I was so convinced that it was the right place for him.
So now I wait. Convinced again of an ideal setting for Cameron, but reminded that my convictions aren’t always the best solution. I’ll put my trust in the professionals that are running this “most ideal” postsecondary program, and readily accept their decision. One bright side is that the decision will be made within a few short weeks. If things don’t go in Cameron’s favor, we’ll have plenty of time to formulate a Plan B. Which also gives me plenty of time to revise my “worst thing about postsecondary searching” award recipient. I suspect that I will be well-acquainted with every nook and cranny of my bedroom ceiling before this process is complete.
Last week I had the opportunity to head to Washington, DC to attend the “Autism Speaks to Washington” summit. This was one of my first times in Washington since 2011 when I went to DC to meet with New Jersey Senator Robert Menendez to discuss the Combating Autism Reauthorization Act (CARA). It was a huge moment for me when I found out that not only would I be doing social media for the summit, I would be introducing Senator Menendez before his keynote address.
I have to say that the three-day event was a life-changing experience. As a self-advocate I believe passionately in the need for a national agenda and to get over 300 participants to share a collective goal for that was amazing beyond words. I could share a million high points from the summit, but something happened on the way home that both shook me up and reminded me of how far I’ve come personally. I was leaving early from the summit to get on an Acela train to head back to New Jersey in time for a book signing. I had to go back to my hotel to pick up my belongings, and then head quickly to the train station.
This is when my nightmare began. I ended up making it back to the hotel in plenty of time, but on the way to the train station got caught in a massive traffic jam. I was devastated to find what should have been a 20-minute taxi ride take over an hour. With a heart that was beating what seemed like a thousand times per second, I swung my luggage out of the back of the cab and ran inside. When I got to the Acela stand I read the time: 3:03 p.m. I had missed my train by two minutes!
These types of situations are always a bit tough for me. In the past I’ve never gone on a long train ride by myself. So I slowed down my breathing, rubbed my hands together (which I sometimes do in stressful situations), put on my headphones and listened to some music, and decided on my next move. I went to the information desk, found the front desk for ticketing and was able to get on a 3:30 p.m. regional train instead. Fortunately that train had no delays and I showed up to my book signing only 10 minutes late.
I think I learned an amazing amount about myself. If I were thrown into a situation like this a few years ago, I would have panicked and lost my cool. One of my mantras growing up was “No problems, just solutions.” I would chant this over and over to calm myself down. Public transportation will always be hard for me due to the uncertainty of situations, but I think some self-soothing skills I’ve developed helped me out in a tough situation. I encourage everyone—not only those with autism—to try to discover such coping strategies for yourself. Stressful situations will always come about in life and it’s how you act that will decide how it will go.
Always give yourself the upper hand by preparing and knowing how to deal with any problematic situation that may occur. When a problem arises look around, consider your options, ask for help if needed and find a solution. Not only will you solve the problem, but you will take another step toward self-sufficiency.
This hasn't been a peaceful time in the autism community. What with Suzanne Wright's highly controversial post at Autism Speaks and John Elder Robison's subsequent resignation from Autism Speaks' boards, we've seen our fair share of conflict. And with good reason, too; we're talking about core issues, getting to the heart of what it means to support people with autism. The claim I've heard repeated most often is that Autism Speaks—with its motto, “It's time to listen,”—has not listened well. As such, it was all the more important for me to take time to listen closely before writing a response.
Here's the first thing I heard, when I stopped to listen: This latest turn of events is upsetting, yet it doesn't mean that Autism Speaks is “all bad.” (That's exactly the kind of black-and-white thinking that we found so upsetting in Suzanne Wright's letter.) Disturbing as that letter was, it doesn't erase the good Autism Speaks has done … and they have done a great deal for our community. Their website alone is an incredibly rich resource, a veritable treasure trove of toolkits. I have friends among their staffers, exceptional people dedicated to supporting people with autism and their families. I've contributed to Autism Speaks' blog, and volunteered for a “Light It Up Blue” campaign too. I did so because I wanted to make a contribution, however small. I wanted to help create a better world for my brother.
And like so many of us, I felt my heart sink as I read Wright's call to action. As I read, I thought, There's so little hope here. I feel a terrible sadness that this was the message sent out on the eve of Autism Speaks' national policy and action summit. That fear and despair and exhaustion and emergency were chosen to describe the lives of families like mine.
To be sure, it's important to acknowledging the realities of autism. I know what it's like to live some fear and despair and exhaustion and emergency, and I suspect that you do too. It is hard to keep your chin up when your brother has a black eye from self-injury, and might give you one at any moment. The challenges of autism are real, and they impact family members. We do get tired. We do get scared. We're only human, after all.
But here's the bigger truth, the TRUER truth, the truth that was notably absent from Suzanne Wright's letter: We are strong. Our sons and daughters, our brothers and sisters, our husbands and wives who have autism … THEY are strong. They are brave. They face difficulties every single day, it's true, but they also bring light and laughter and innovation and creativity and so many priceless gifts. And we family members are strong too. We are brave. We walk amongst ambiguities and impossible choices, and we keep going.
And you know what makes us strong, don't you? Of course you do. We are strong because we love each other. And that love is more powerful than millions of dollars. More powerful than fear. More powerful than anything.
In this week of controversy, I appreciated Laura Shumaker's respectful, heartfelt piece, “Who Does Autism Speaks Speak For?”
She wrote, “My son Matthew was a very challenging kid to raise, and at times I felt hopeless and depressed. But he is now a delightful, earnest, quirky and loving 27-year-old … He had a reputation for being aggressive and even violent, but as he has grown and matured, [he] is a sweet gentle soul. He is currently attempting to get in touch with everyone who knew ‘the old Matthew' and tell them he is sorry. I admire him so much.”
I wonder: Why wasn't a story like that chosen for Wright's letter? And I join Laura Shumaker in asking Autism Speaks to apologize for their words, for leading from a place of fear rather than a place of love. Because that's what I've learned from my brother, my friends, my family members on the spectrum: how not to give up, how not to give in to fear. It is from them that I have learned to carry on.
The "Battle of the Bulge" was one of the most infamous conflicts of World War II. It has—regrettably in my view—inspired a more informal usage of the name to describe some people’s ongoing struggles to maintain a healthy weight. I have been working on reducing my own waistline, which has taken on a particular roundness from years of sitting while completing my college education (my father has given me a creative nickname of “Buddha Belly”). The latest tool in my ongoing crusade to better my physical being is a new DVD exercise program with which I hope to get some promising results.
The program consists of a series of 10-minute workouts, each honing in on different areas of the body. A person can do from one to three of these workouts (with warm-up and cool-down periods) each day. Some of the exercises require the use of a mat and elastic bands.
Due to my current stamina level, I am concentrating on one 10-minute workout per day, but I hope to add more workouts in per day as time goes on. Each workout is made up of 10 to 20 exercises which target specific muscle groups for the area of my body that I am working on in a short span of time. I watch the exercises being carried out on a DVD and then perform them myself.
I do the best that I can, but sometimes I do not notice certain nuances of the exercises and assume a bad form. I usually start out concentrating on one important detail of the exercise while missing finer details and my form reflects that. My mother acts as my coach and spotter, helping me to maintain proper form and to properly utilize my equipment. Her help and encouragement has made these workouts much more bearable for me. If I am using bad form or missing an important component of the exercise, my mother stops me, and I watch the DVD again to see where I have to correct myself.
When first trying a new exercise, it is hard for me to concentrate on its multiple aspects. However, after watching the exercise again on the DVD and with my mother’s verbal instructions, I eventually gain an understanding of what I am supposed to do. My moves smooth out and my frustration level lessens as I see that I am moving along with the instructors. I also like this particular DVD program because there are modified moves for beginners—something I really need right now. I know that as I work with the program more everything will come to me easier and the workout will go much smoother. The workouts do place some strain on my body, which is something that I do not normally physically feel very often but notice right away when I am experiencing it. The exercises can be quite grueling for me because of my weak muscle tone, gross motor issues, and very tight hamstrings. Not being able to motor plan as well as most people my age is a disadvantage for me, and I can become very frustrated when I cannot move the way I want to, especially when I see the instructors moving well and doing the exercises perfectly. I have to remember that I am just learning and nothing is perfect in this world. My mother also reminds me that I can do the modified moves and as long as I am trying and doing the exercises as well as I can, I am benefiting.
I am still at the beginning stage of figuring out my new exercise program, but I do like it. I work up quite a sweat, and I feel that all my hard work will better my overall health. After all, this program is helping me set a new precedent for good healthy habits for the rest of my life, so I feel it is well worth pursuing.
One of the first things people ask me about my 21-year-old son Mickey is, “Is he high functioning?”
I hate that question.
Are they asking his IQ score? If he speaks? Whether he will be able to live independently? I don’t know how to answer.
How well does anyone function all the time? Isn’t it circumstantial? Mickey does well socially when he feels comfortable and safe with people he knows. He has learned to ask such appropriate questions as, “What did you do today?” or “How was your weekend?” although he has a limited amount of small talk in him. He still struggles to sustain a complex conversation. When he doesn’t feel like interacting, he’ll say, “Leave me alone, I don’t want to talk.” Not exactly polite, but still functional. But put him in a room teeming with noisy, unfamiliar people or loud music? He’ll be out the door so fast he’ll leave skid marks.
All people are high functioning in some ways, less so in others. If you ask me to write an essay, I’d say—modestly—that I am fairly high functioning in that regard. But if you depended on me to rappel down the side of a cliff or navigate a raft through white water, you’d be putting your money on the wrong gal. You’d never make it out alive.
As students, we’re all expected to do well in every subject. In reality most of us are not good at everything. As we grow, we tend to narrow our focus. We specialize. We seek out work in areas where we can excel. Autistic or not, everyone has a mix of strengths and challenges.
If you can do calculus but can’t tie your shoes, are you high or low functioning? Does high functioning mean you can live independently but low means you can’t? Mickey can’t yet safely turn on the stove to cook for himself. But he is adept at making his own sandwiches and reheating food in the microwave. He won’t starve. Where does he fall on the continuum? Just because an autistic person can speak, make great eye contact or perform academically doesn’t mean that he doesn’t also have major social and behavioral challenges. Where is the arbitrary cut-off point between high and low? Who gets to decide?
When Mickey was 19 months old he saw his first speech therapist. She said he had a “mild” delay. Several months later, a different evaluator told us the delay was “severe.” She said, “It’s possible he may never speak at all.” Mickey hadn’t changed; he was still the same loving, lovable little boy with the megawatt smile. Nor had his challenges changed. What had changed? The evaluator.
During Mickey’s first year in a self-contained high school class, teachers gave him work that was too challenging. Mickey became disruptive. He distracted other students with jokes, off-topic remarks and such questions as, “Do brown cows make chocolate milk?” My husband and I asked for a Functional Behavior Assessment.
After observing him, the consultant they’d hired noted that Mickey was anxious and frustrated because the curriculum wasn’t geared to his needs. They’d expected him to comprehend ninth-grade reading materials even though he was reading at a fifth-grade level. She developed a behavior plan for the school to follow.
Privately, she told us, “When they called me to come in, they told me I’d be observing a low functioning child. But your son is verbal and socially connected. That’s not low functioning.”
It’s human nature to want to categorize people and create hierarchies, but labels can be dangerous. They can so easily be used to dismiss people, to see them as “less than.”
How should I respond when someone asks me where Mickey “falls” on the autism spectrum? His development isn’t linear; you can’t measure it with a yardstick or clock.
Maybe the only truthful answer to the question “Is your son high or low functioning?” is simply, “Yes.”
Cameron and I embarked on our second college road trip together last week. If you’ve ever seen “Planes Trains and Automobiles” or “College Road Trip,” you will understand when I say last week’s trip was truly worthy of Hollywood. I found myself looking over my shoulder to see if there was a camera crew following us, because the comedy of errors might actually be funny … if it hadn’t happened to me.
In an effort to minimize the time spent away from school, Cameron and I were flying out in the morning, and back the same evening. It was a short, 90-minute flight, so it seemed like a perfectly rational travel plan. We left our house at 7:15 that morning, and made it to the airport an hour before our flight. (Which, for the record, is unusual for me. I’m more of a from-security-line-to-boarding-line, cutting-it-close-so-as-to-minimize-waiting-around kind of person.)
When Cameron and I arrived at the security checkpoint, I asked if it would be possible for him to keep his boots on because of his broken foot. I was told they would need to pat him down, so I didn’t think that would be a problem. We waited for a male TSA officer to pat him down, and as part of protocol, he tested for certain chemicals used in explosives. For some unknown reason, Cameron’s chemical swab came back positive, so we had to wait for a supervisor. A female supervisor showed up on the scene 15 minutes later, calibrated the equipment, and said Cameron would need to have an enhanced pat down by a male supervisor. (At this point, I’m really regretting not having Cameron just take his boots off, but it was too late for that option.) A male supervisor eventually showed up, and when all was said and done, final boarding call for our flight was being announced by the time we left security an hour after arriving at the airport. We made the flight, but it was unnecessarily stressful, and all because I wanted to save Cameron the effort of removing his shoes from his injured foot.
While in flight, I informed Cameron that we would be arriving home at 11:00 that evening. This did not sit well with Cameron. He grumbled that he probably would do terribly in the interview he was scheduled to have with the admission committee that afternoon because he was in a bad mood from knowing he wouldn’t get enough sleep for school tomorrow. This did not sit well with me. I took the opportunity to conduct a mini-lecture about being an adult and being perfectly capable of functioning even when missing his usual bedtime and the need to, basically, suck it up. Surprisingly, this “suck it up” speech did little in the way of changing Cameron’s mood, so I finally offered to drive him to school so he would be able to sleep longer. I decided this was the only way to clear his mind of the distraction. I figured there was no sense in going to the effort of visiting an out-of-state program, only to have him tank in the interview because of a grueling travel schedule.
As it turned out, Cameron’s bad mood was the least of my worries. We arrived at the airport rental car desk at 11:00. The campus was a 45-minute drive, and the Open House program began at 12:30. We should have plenty of time for lunch along the way. Our last college road trip entailed complicated travel as well, and there was no time for lunch. This is an even more serious infraction for Cameron than a late bedtime. I didn’t want to make that mistake again. Only … due to a computer system outage, we didn’t get behind the wheel of our rental car until 12:04. And it was a Prius, so it took me another five minutes to figure out how to start the car, and make it go forward. I began to swear like a sailor in my search for the seat adjustment controls and ultimately decide the fully-reclined position is fine. Okay … I called the program coordinator, and explained that we were running late. But still … we had to eat. I decided a five-minute fast food stop was a good idea ... Only it took 20 minutes. The Open House program was well underway, and we still hadn’t made it off the airport property. And the Prius didn’t go as fast as I like to drive in these situations. (Maybe that’s a good thing.) I called my mother from the car, and broke into tears. She told me not to cry and hung up without saying good-bye, because her contractor was at the door. Why did I call my mother? She’s in the middle of moving, and even more stressed out than I am. This was bad idea number 72 of the day, and the day was still young.
Cameron and I made it into the campus auditorium in time for the concluding question and answer session. We didn’t have time for the student-guided tour because he had an interview immediately following the Open House. The interview lasted about an hour, and this may come as a great shock, but Cameron was grumbly and borderline rude during the process. When we left the building, we both agreed that it had not been a shining moment for him. He said he was bored and tired. But having shared space with me all morning and my giant ball of stress and anxiety, I can understand Cameron not being himself. I know I certainly wasn’t at my best.
On the way back to the airport, someone else had an accident, which gave us an extra 30 minutes to reflect on the day. Once at the airport, our 90-minute flight delay gave us even more opportunity for reflection. Based on my emotional state that day, I’m not sure I am capable of assessing whether or not the program we visited is the best fit for Cameron. But I am certain that I want to minimize the number of these trips we make!
When Cody was younger he could become agitated at the drop of a hat. This usually led to an all-out tantrum. I tried many things to calm him. Back then, verbal communication did little because he could not communicate to me what had triggered his outburst. So if the trigger was not obvious to me I had no way of knowing what it was. Therefore, I couldn’t remove it.
Sometimes even when I knew what set his rage in motion it was too late for pre-emptive action. Loud noises were often the catalyst for a sudden occurrence of fury. But I couldn’t always prevent another driver from honking the horn, or another child from screaming, or accidentally dropping a metal pan on the floor. So damage control was essential.
If we were at home, and it was apparent what had precipitated Cody’s outburst, I could usually hold him on my lap in a bear hug and we would rock while I whispered assurances to him that all was well. It usually only took a few moments before he was ready to resume his day. But if the trigger was not apparent then I had a multi-step system, which I had developed over time by trial and error, to ascertain what the problem was and then provide a solution that would make the world right again.
Through experience I learned that self-injurious actions were most always brought on by anger and frustration with himself. Screaming and running and hiding were usually the result of something that frightened him. And lashing out at someone or something was an expression of anger with that person or object.
When it was a matter of self-anger or frustration, I found distraction to be a good tool. I would take him to another room and offer options of different activities to do. Listening to soft music was particularly effective.
A fearful situation was usually pretty easily rectified. If I saw what made him afraid then a visual demonstration of why he didn’t have to be afraid would work if his fear was unfounded. But if his fear was valid then removing the thing that caused the fear, such as a spider, would do the trick. However if it was unclear to me what caused the fear, then removing him from the area and using the rocking bear hug method would resolve the matter pretty quickly.
In the case of anger at another individual or object, separating Cody from the individual or putting the object up out of sight and sitting with him in a quiet area for a few minutes would usually work quite nicely.
These methods worked in public with a little planning ahead and some slight adaptations. For instance, if we went to the grocery store, making sure Cody was engaged in the shopping process was key to a smooth, uneventful trip. But if another child were to cause a ruckus then finding a quieter area of the store for a few minutes would work.
Cody is an adult now and he is able to express himself much easier than he could in his youth. And it’s much easier to alleviate building tensions now than in the past. But he still has times when unpleasant stimuli will cause agitation. Now, many times he takes care of the matter on his own.
Distraction is rarely a part of our comfort repertoire anymore since he’s able to at least tell me what will make him feel better even if he can’t tell me what made him feel bad right away. I don’t use the rocking bear hug method now but Cody will ask me to sit on the sofa so he can lay his head on my leg and have me lightly rub my hand over his hair. And now if he becomes angry with a person he knows to walk away, and most times he will put an object of anger up out of sight himself.
But these are just different versions of the same techniques I used when he was a child. Cody has just modified them according to his own abilities. I’m glad I was able to find these simple techniques worked back then, and very happy that they still work for Cody now.
From one sibling to another, I hope that you never have to deal with this. I hope that you never have to watch your brother or sister melt down over and over for a decade. If this does happen to you and your family, I believe that you'll make it through, but it will not be easy. It will make you question everything you thought you knew. It will take away your basic sense of stability in the world. Because if someone you love—someone you know has a good heart, a good mind—can just disappear like that? Can just vanish into a haze of rage? Then you'll start to think that maybe everything is illusory. Maybe nothing is certain. Maybe anything, and anyone, can be lost at any moment. And that's true enough. It's true that the vulnerability involved in being human is terrifying. But it's not true that we're alone in it. Everyone has to face this awful reality; no one is exempt. You just had to face it earlier than most, honey.
Maybe you're like me, and you've listened to your parents tell stories like this one: “Your brother had a hard day yesterday. We were on a walk, and he was getting agitated, getting too heavy-handed with the dog's leash. But he wouldn't let go. We were walking by the playground of your old elementary school when he hit me, and tried to tackle me. Yes, I'm fine physically, honey—it was just … traumatic, that's all. And then he kicked the backpacks—these little children's backpacks that were piled up by the side of the playground. Their parents were upset … ”
If your parents are like mine, they'll tell you these stories as quietly as possible. They'll say, “I'm just thankful it wasn't worse.” But if you're anything like me, you won't understand that. You'll be in shock. For the life of you, you won't be able to see how they're being so … calm. It will get worse after you hang up, after the emptiness passes. Feelings will arise—fear, anger, grief—and you'll wish you could go back to being numb. A wonderful line of Anne Lamott's will run through your mind: “She told me to feel the feelings. I did. They felt like shit.” And they do. But you'll know better than to think you can skip over these feelings. It would be great if you could stuff them down with food or alcohol or exercise or compulsive productivity, but you can't, not for long. The futility of it will be too clear. The feelings always win.
Friend, I'm sure you've already figured out that parts of your experience mirror that of families who deal with addiction. In some ways, it's like your sibling is in and out of rehab. They're always trying to get their life together, yet they relapse again and again. Only in your case, the truth is blurrier than that, because you don't know what drives your sibling's behavior, or how much control they actually have over their actions. It's an awful ambiguity, really. And there isn't anyone to blame. Everyone—including your sibling—is just doing the best they can.
So here's what I hope for you: I hope that, when you feel that you can't take it anymore, someone steps alongside you. I hope that when you say, aloud, “My heart is just so heavy,” you'll have someone wrap their arms around you and say, “Then I'll carry it.”
I hope you have someone to carry your heart.
The person who says those words to you may not know the eponymous ee cummings poem, but you will. You'll hear the verses in your mind, and they will quiet you:
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart (i carry it in my heart)
The biggest part of my job is knowing all the individuals on my caseload and what they are capable of doing. A lot of the time it is trial and error, frustration, and ultimately, success once we find out what skills the individuals have. The end goal for me is always to find employment for all the individuals on my caseload, and learning what they are capable of is a great starting point. Sometimes the best way to learn about a new individual is just sitting with them and seeing what they do during the day, and sometimes it is listening to other people who have been around that individual.
When I was first hired as a Supported Employment Manager, the first part of my job was to receive a lot of training on how to handle the individuals and how the company works. After training, I spent most of my time during the first few months reading behavior plans and looking at files. The behavior plans gave me insight into the past of the individuals, things they like and dislike, and ways to help them learn new job skills. I quickly learned that there was only so much I could learn from a behavior plan, so I spent some time just sitting with the individuals and talking with the staff. Most of the staff had been with the same individual for years and was my best source on learning about the individual as a person, rather than simply seeing an overview of behaviors.
I had to put a lot of trust into the staff and their knowledge of each individual when I first started out, and it did help. Over time, I got to know my individuals and also got to know some of the other individuals that are not on my caseload just by sitting with them. Every time a new individual comes into the company or comes from the school we work with, it is a chance to meet someone new and learn new ways of interacting with them. Just recently I added a new individual to my caseload from the school our company works with. In reading up on him, I came to find out that he is the grandson of our founder, which most people seemed to think put a lot of pressure on me. In my head I was thinking, “Well, I must be doing something right to get the founder’s grandson and no one else got him.” So I spent some time sitting with him at the school to learn all about him and the staff he had been working with. I came to find out that even though the individual cannot speak and uses an iPad to communicate, he is very intelligent and picks up on things right away.
Once this young man was in our program, it was easier for me to spend some time with him, and in that time he actually got to know some things about me. I got to learn that he likes jobs where he is putting things together and does not like to get dirty. He would ask me questions about football on his iPad and ask me how my day was going. It is the little things in getting to know someone with autism that sometimes matter the most to them. So for anyone in the business of working with people with autism: Take the time to just sit with an individual and talk with them. I guarantee that you will learn about that individual and maybe even something about yourself you did not know.
The positive result of Reilly's recent “break” from school was that I had a chance to have a long talk with his counselor at NYIT about how he is doing in general and what our next steps might be.
While the Vocational Independence Program has been a productive experience for Reilly, we were wondering if he is outgrowing it, and what comes next. We were concerned that he might be “spinning his wheels,” getting too comfortable and not making progress toward a life plan.
Happily, my conversation and subsequent email communication with Erin, his counselor, have given me confidence that we/they are on the right path, moving forward.
I told Erin we weren't certain if staying in the VIP program another semester would be productive and the best use of our resources. We don't know if Reilly can (or needs to) complete a four-year degree, or whether it would be worth the price tag in any event. If we got him trained for a job, we could use the money we would spend on tuition to help him with living expenses. Erin argued that academics is one of Reilly's strong points. He's taking two college-credit classes this semester, and many of his peers aren't able to do that. So maybe we shouldn't give up on college just yet.
Reilly's personal goal is to work as an equipment manager for an NFL football team. It's not as crazy as it sounds. A few years ago, his goal was to be a football player at the University of Hawaii and then get drafted into the NFL. We pointed out the unlikelihood of that happening, since he doesn't actually play football, though watching it is an obsession. He reconsidered his career goals and thought maybe he should be a team owner. If only he had a spare billion to buy a team. But he was lucky enough to spend two summers interning at the Washington Redskins Training Camp—his idea of heaven! Interns work under the team's equipment manager, doing things like folding towels and collecting practice uniforms and equipment when the team comes off the field. Reilly also got to operate a machine that snaps the ball for the kickers at practice. One day he got to drive a golf cart around the field, picking up players and returning them to the locker room.
So a sports equipment manager or assistant might be doable, right up his alley. Even if he can't work in the NFL, there are likely other sports facilities or recreation programs that might be a good fit for him. We visited a school in Connecticut that has a sports management program, which, if he could complete it, would be useful for getting a job in the field. The question is whether Reilly is ready for that, and whether he can handle a full course load. The jury is still out.
Meanwhile, Erin said the academic director at VIP had found a Principles of Management course Reilly could take next semester at NYIT. They are working on getting him an internship in the school's athletic facility, which could give him good hands-on experience. Some very positive steps.
For his part, Reilly agreed that he needed to work on some personal goals: hygiene, organizing his schoolwork better, improving his “reciprocal conversation skills.” Probably good things for most college-age boys to be working on! So now the question is whether to focus on the school in Connecticut, work on next steps at NYIT, or both. Oh, and of course getting everyone home for Thanksgiving and preparing for the holidays. Always plenty of items on the “to do” list!
But it was nice to hear that NYIT is working on a Reilly-specific plan, to help him take the next step. We're not alone. We're not wasting time and resources. Good to know.
I am constantly reminding myself that "Cameron will be okay." This phrase has become somewhat of a mantra (and I'm actually starting to believe it.) My mantra came in handy while sitting in the ER with Cameron last weekend after his accident on the way to work. The mantra rang true when Cameron rejected my suggestion that he take the following weekend off from work, so as not to have to hobble around the restaurant on his broken foot. Cameron was adamantly opposed to taking two weekends off in a row, and soldiered on, big clunky orthopedic boot and all. With his desire to work, Cameron may very well indeed be okay.
But then I think, "Will he be okay? Will he really?"
Since the beginning of the school year, Cameron has been happily participating in his third internship in as many years. This internship is part of his regular school day and is arranged for by the school's Transition Department. These internships have been great for many reasons beyond the obvious work experience he is gaining. Cameron has already built an impressive resume, with three work experience entries of 9 months or more. I'd say that's impressive for any 18-year-old, regardless of his learning profile. I don't think my own resume at that age would reflect such longevity. And let's face it: for the type of employment opportunities Cameron will likely be seeking, length of time with employer is a key consideration for hiring managers. But I always worry that not only does Cameron need the right kind of job opportunity, he also needs the right kind of manager. I worry that not all employers will be as sympathetic to Cameron's challenges, and that he's just been lucky so far.
The school recently asked Cameron's current internship manager for an evaluation of Cameron's performance. Cameron's transition teacher immediately shared the results with me via email. Cameron received the highest rating in every category, and the manager made glowing comments about Cameron's work ethic. So, yeah ... maybe Cameron actually will be okay. I mean ... yeah, Cameron will be okay. (Deep, cleansing breath.)
Many of my fears about Cameron's coming of age have already been tested. I had feared a medical emergency situation in which Cameron had the right to make his own decisions, and made the wrong ones. Last weekend in the ER, no one tried to shut me out of the decision-making process and I was still the person whose signature was sought. But even if Cameron had been left to his own devices, and I had been told that it was Cameron's signature they needed, I'm confident that Cameron would have made the right choices. And when given the opportunity to stay home from work, not only does Cameron not take the opportunity, but he avoids missing work at all costs.
So, yeah. Cameron will be okay. I am firmly convinced of It ... At the time of writing ... As I push troublesome scenarios from my head while I try to close this column on a happy note. No, really. I mean it. Cameron will be okay.
Every time it happens, I can't help but smile; there's something about the sight of a half-dozen children flinging themselves onto the playground that makes me happy. As the late October daylight fades, I watch David* and Darcy* race around the jungle gym. Keeping up with the twins at the monthly respite night is a workout.
After their burst of energy subsides, I walk over to Darcy; she's sitting by herself, meditatively picking up pieces of playground flooring. She gave me a big smile earlier, but now she's turned into herself, her usual radiance dimmed.
I'm a supersibling too, so I know how it is: We smile and help calm our siblings down and pitch in with diaper changes until we just can't anymore, until we have to take a break from it all. At such times, it helps to look at simple things, like pieces of flooring or books we've read a hundred times. It helps to be with people, but not have to say anything.
After a few moments of quiet, Darcy digs a piece of bright purple flooring out from among the dingier colors. “Isn't this one pretty? Purple is my favorite color,” she says.
“Very,” I reply. “It's my favorite too. It's the color of royalty, did you know that? Here's another one.”
We assemble all the purple pieces we can find in a companionable quiet. “You know, this is like looking for sea glass,” I tell her. “Do you know what sea glass is?”
She shakes her head no.
“It's pieces of glass—usually broken bottles—that have been tossed by the ocean until they're smooth. It's easy to find green and brown pieces, but I used to love to hunt for rare colors—aquas and blues—when I went to the beach.”
“I've never been to the beach,” she says, longing in her voice. I've forgotten how far inland our Alabama town is; having grown up in New Jersey, I take it for granted that children have been to the shore. “I have sea glass at home,” I say, “I'll be sure to bring it for you next month.”
She smiles, her usual radiance returning. Just then, David throws himself onto the climbing wall next to us, calling out, “Help me! Mom, help me!”
“I'll help you, but I know you know I'm not Mom,” I laugh. “I'm Caroline. Could you call me that instead?”
“Caroline,” he repeats, clear as a bell. With several boosts (and several shrieks which seem to combine joy and fear), he makes it to the top level of the jungle gym.
“Awesome!” Darcy and I call up.
“It's awesome!” he echoes, smiling down at us.
“Five minutes, everyone!” the respite leader shouts. Of course, this prompts half the kids to stand by the door, trying to push their way in. So I pull out my most reliable distraction strategy: “Let's race! On your mark, get set … ”
“GO!” David cries. Several kids take the bait, and together we race. (Everyone wins.)
After things have quieted down, Darcy asks me, apropos of nothing, “Who's your favorite songwriter?”
“I'm not sure,” I say. I could be wrong, but I think that what Darcy really wants is for me to pose the same question to her. So I do. “Who's yours?”
“Taylor Swift!” she grins. As soon as she says it, I know what her favorite song will be: “22.” It's my favorite Swift song too. Most of Swift's songs are about romance, but “22” is about a night out with friends. It's about being young and carefree, leaving the weight of responsibilities behind. It is, in short, everything a supersibling wants but feels she can't allow herself. Plus, it's really catchy. The first time I heard it, it was stuck in my head for a week.
“'It feels like a perfect night …'” I say, quoting the song’s opening line. And it does. Being here with Darcy, I feel less alone in the vast, unfathomable ocean that is life as an autism sibling. And it seems to me that we are like sea glass, shaped by our siblings as well as our own choices, becoming something new.
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