Between this column, my blog, and my series of children’s books, I have been able to produce a steady stream of written material. In addition, I have taken advantage of other opportunities to showcase my writing when the chance has arisen. One such chance came to me recently when a previous religious education teacher offered me an opportunity to contribute a column on my church’s website. I accepted the offer and set to work on my submission, and, in the process of writing, found out a few things about myself.
As I sat down to write my first column for the site, I realized how very personal the subject matter of my religion was to me. Now I had to express my feelings regarding aspects of my religion to others in a way that they would understand my feelings and standpoint. I found that this was an unexpected challenge and it added a new dimension to my writing. I had to come from a different angle than I usually take to express myself and, the writing process for this column was much more strenuous to work out than my other writing projects have been. I had to do a lot of soul-searching on this one because it involved a part of my identity that I have always just accepted at face value. I am glad that I did, though, because I have written two columns for the website so far, and I am very happy with the results.
I greatly appreciate having religion in my life. As with many people who have autism, I, too, crave a very structured schedule, but I have not always been able to have it. There has been, however, one very constant fixture that I knew I could hang onto. This fixture was the religious service that my family and I participate in every week. It has satisfied my desire for uniformity because it always follows the same order of events. Certain parts might have some changes in wording to suit particular occasions or time periods and special parts might be added or omitted, but otherwise the service stays the same. I associate a strong feeling of comfort with the religious service at my church because I know what to expect. It is also something I look forward to each week to reaffirm my connection with God, my religious upbringing, and to obtain guidance for my life. Working on these pieces for the church website has helped me to expand as a writer and to understand myself a little better, a journey that I am proud of having traveled. My religion has been a part of me for all of my life, and I am thankful that it has continued to stay with me as an adult. I can count on it as an axis my world can peacefully turn on. It is now more to me than just something I accept; it is a part of my identity which I will never give up.
The first I knew that Mickey’s school was holding a student art auction was from an email from Cindy, the school principal.
When the state senator arrived, Cindy wrote, they called all the classrooms down to the lobby to cut the ceremonial ribbon. “I asked for volunteers to help and Mickey walked right up. He has a picture in our show too.” She attached a photo of the painting, titled "My Favorite Meal,” as well as an interview with the artist they’d posted beside the painting.
Q: What is your inspiration?
M: I want lunch.
Q: What tools did you use? Why?
M: Paint and paintbrush. So I can paint better.
Q: What materials did you use?
Q: What do you like best about your piece?
M: It’s perfect. It’s wonderful. I like the strawberry milkshake best.
Q: What is it?
M: McDonald's fast food.
Q: What is your favorite part of the piece?
M: All of it.
Q: What were you trying to say in the work?
M: I'd like to order these.
This was too delightful not to share. I sent out an email blast, and posted it to Facebook. The responses were immediate.
“Love you, love Mickey, love this,” my friend Beth wrote.
“The interview is SO Mickey!” my college roommate Pat said.
“Ok, I liked the art, I even guessed what it was before reading the interview,” my sister-in-law Susan said. “BUT it is the best interview ever! It reads like Woody Allen.”
“Well I hope he got lunch,” my brother Marty said. “Artists get very temperamental when they are hungry.”
My teacher Joelle, a writer and painter herself, had a different take. “I love Mickey's sensibility. I love his painting! … Mickey in his being literally tastes what he paints. An artist prays for this kind of immediacy. What we feel may be deadpan literal to him may well be sensual. ‘What materials did you use’! And his answer is ‘Color.’ I know exactly what he means. I called my last art show ‘Color as Refuge.’”
Hmm. I hadn’t even thought of it that way. I looked through a stack of Mickey’s paintings over the years. Not masterful, but so self-assured. I stopped to study a sea of sapphire blue swirling beneath magenta mountains. Such bold brush strokes. Such saturated color. Joelle was right; I could feel Mickey’s sheer exuberance.
I thought about all his fine motor challenges. His mixed reactivity to sensory input—how as a baby he couldn’t tolerate the feel of sand at the beach, or grass beneath his bare feet. Couldn’t bear to touch clay or glue. How he’d struggled to write, his pencil pressure so weak that for a long time we couldn’t even make out the marks on the page. All those years of occupational therapy.
Color as refuge.
The dictionary defines refuge as “a condition of being safe or sheltered from pursuit, danger, or trouble.” Mickey is exiting school soon; he’s anxious about what comes next. Perhaps color, as well as painting pictures of his favorite meal, provides a measure of comfort.
The current bid on the painting was $10. “We should bid,” I told my husband Marc. “It’s a donation to the school.”
“My Mick is worth $100,” Marc said.
“No,” I told him. “He’s priceless.”
Originally published October 17, 2011.Autism is tough on marriages. While autism was not the reason for the demise of my first marriage, I found myself to be a single mom of a 9-month-old, and went through the realization of “something isn’t right with my son” without a partner. Being a single mom is tough. Being a single mom of a child with disabilities is… well, even suckier. I am very fortunate in that I got the whole marriage thing right the second time around. My husband is an amazing STEP father. I have to emphasize STEP because Cameron refuses to let anyone make the mistake of referring to my husband as his father. STEP is immediately added to the definition of what kind of father my husband is. But it is definitely a step in the right direction. I’m not sure where my son would be in life, if it weren’t for the influence my husband has had over him, and over me. Way back when my husband and I started dating, Cameron’s diet consisted of two food groups: yellow and white. That would include macaroni and cheese, chicken nuggets, grilled cheese, and the like. There wasn’t much in the way of fruits and vegetables (even yellow or white ones). But thanks to the impartial influence of my husband, Cameron was exposed to more and more mealtime diversity. It didn’t always make for a pleasant dinner, but like a single raindrop starting the Grand Canyon, gradually my son became a “try anything on your plate” kind of guy. Just as I never thought I’d see the day when my son would willingly eat a salad, I never thought Cameron would ever be able to master riding a bicycle. He was uncoordinated and fearful when it came to trying. My son’s reluctance, though it was great, was no match for my husband’s patience. Back when they were going through the daily drill of learning to balance without training wheels, I was the one making that sucking sound. I felt the need to explain to my husband the ins and outs of sensory integration disorder, midline issues, and all those buzz words I picked up after years of Occupational Therapy. I was willing to give Cameron a pass on learning to ride a bike, because I was convinced he couldn’t do it, and mothers know best, after all. But guess what? Cameron quickly learned to ride on his own, and today riding a bike provides Cameron with the ability to go out and about in the community on his own. My husband has positively influenced my parenting of Cameron in countless ways. But what if I hadn’t been so lucky? Would Cameron still be eating only mac & cheese for Thanksgiving? Would he not have the freedom he enjoys today of being able to experience our nation’s capitol on his own? As I reflect back on all the positive influences my husband has made, I’m left wondering how much of our behavior as parents is shaping the behavior of our children? Are our children learning to NOT do something they’re perfectly capable of doing, simply because we as parents are inadvertently sheltering them from trying? Sometimes it’s the parents that need the support, as much as the children. Wouldn’t it be wonderful, if when we find our resolve being worn down, and we’re tempted to “give in” because it will be so much “easier” on everyone, we could tag someone in our corner to step in and hold the course? While it’s tough asking for help as a parent, it’s even tougher to accept the help we didn’t ask for. Sometimes it takes a step in an unexpected direction to find an easier path.
Yes, I do know my son is almost 27 years old and can handle many more things on his own than I give him credit for, but sometimes it is so hard to step back and let that happen. The scary unknown is rearing its ugly head again. Yet, when this opportunity presents itself it always serves to teach me a valuable lesson.
Going to Cody’s new program with him twice a week and watching him get up and down out of his chair 15 times an hour, not being able to focus on a given task and spewing random strings of echolalia out of the blue had all become old and discouraging. I really had lost all hope that this program was going to be right for Cody. But as a last ditch effort, I decided to see what would happen if I removed myself from the scene.
Cody and I walked in the door one Thursday morning and just as we were signing in, the Staff Director walked out of the classroom and greeted us. I told him I was going to change things up a bit and just see how well Cody would do without me sitting right there, but I would be just out in the lobby if there were any problems. The Director seemed quite okay with that arrangement and to my surprise—so did Cody.
I sat on the sofa by the front door while he was in class. My ears were perked, listening for any signs that suggested Cody was experiencing any sort of anxiety but there were none. Once however, he did hop up and down and giggle hysterically like he does when he’s happily excited.
I peered in the door from time to time and watched him. He was responding to instructions pretty much on cue. And to my surprise he was interacting with others in the class in a way I’ve never seen him do before.
There are two ladies there who are also clients in the program. Both ladies are much older than Cody but both took a liking to him right from the start. They took on the roles sort of “big sisters” to Cody. Both took him under their wings and gave him lots of encouragement to participate and lots of positive support and praise when he did well. And he was eating it up like candy. The more I watched the more intrigued I became. Soon I noticed this cramping sensation in my cheeks. Then I realized I was smiling so big the corners of my mouth must have been tickling my ear lobes.
Later the class went for a walk at a nearby park. One of the women took Cody’s hand and eagerly said, “Come on Cody, let’s go!” Cody made no objection but smiled and cheerfully complied. Hand-in-hand they left and 45 minutes later returned the same way.
The whole morning went very well. So Monday I sat in the lobby once again. Again there were no problems. The following Thursday they all went to a movie. I took this opportunity to do some grocery shopping then returned to pick Cody up. All went well. On Monday of this week I dropped Cody off and he stayed for the duration of the day then Bill picked him up on his way home from work. When he got home he was a little tired from all the activities but otherwise fine.
I had been so apprehensive about leaving Cody alone there. Even though there are much smaller group settings here than at the adult daycare program he attended before, I still worried about him becoming agitated due to overstimulation and then either having a meltdown or becoming aggressive towards himself or others. And all the while I thought my presence would help to increase his focus on the itinerary. Turns out, in this case I was more of a distraction to Cody instead of the encouraging force I had intended to be.
Like many parents I sometimes seek to help my child when he needs no help. This was one of those times. I realize now that I really needed to just let go and let him succeed on his own. And so far he’s doing a wonderful job of it.
I read a fascinating article this week: Jeff Howe’s CNN Money piece, “Paying for Finn: A Special-Needs Child.” Be forewarned: Reading this in-depth account of an autism family’s financial situation may be overwhelming, especially if you’re a frugality fiend like me. And as a former program director for a nonprofit that supports adults with intellectual and developmental disabilities, I found myself speaking to the family aloud, making helpful comments like: “Seriously now! Those monthly expenses have to come down! And yes, do explore special needs trusts as soon as possible!” Despite this, however, I couldn’t stop reading; the descriptions of Howe’s young autistic son Finn’s relationship with his older sister Annabel kept me hooked.
Reading the piece, I felt as though I’d found a family I could relate to, a family that would understand the dynamics and difficulties of my own. Annabel is two years older than Finn, and I’m two years older than Willie. And though Finn sometimes hurts Annabel during his frequent tantrums, her love for him is unconditional. For her—as for me—there is no question about whether the time, money, and effort her parents spend supporting her brother’s needs is, “worth it.” “If it were up to [Annabel],” Howe writes, “Our every last dollar would go to her brother, the subject of her every poem, her every drawing, the first thought she has on waking and tumbling into his room in search of a hug that is rarely reciprocated.”
Annabel, my sister in spirit, one day it may, indeed, be up to us. And on that day, I can’t help but believe that we will do everything in our power to care for Finn and Willie. We will not always know what to do. In fact, we’ll often find ourselves completely at a loss, but we’ll do the best we can for our brothers. We always have. They may not reciprocate our hugs. They may not be able to stop hurting themselves, or hurting us. But then again, they have surprised us before, and they will do so again.
When I was in the first grade, I wrote my first book. It was a pivotal moment; from then on, I knew for sure that I wanted to be a writer when I grew up. The title of that slim, oh-so-terribly-crayon-illustrated volume? “My Brother.” And now, 22 years later, I’m holding a long-awaited DVD in my hand. It’s a copy of “My Brother,” a 14-minute documentary by Edwin Mah, a graduate student and adjunct faculy member at American University. The short film is about—you guessed it—my brother and me. It’s a little piece of our story, and I’m absolutely terrified to watch it.
But then I think about why I agreed to be featured in the first place. I think about telling our family’s story, and how doing so might be, in some small way, a help for families like Annabel’s. I think about how many people don’t have a filmmaker on hand to document what it’s like to be a sibling.
I put the DVD into my computer, grip my husband’s hand tight, and press "Play."
My favorite line from Howe’s piece described a banner day for Finn, Annabel, and their parents: “One day this spring [Finn] hugged Annabel, out of the blue.”
I could imagine just what that unprecedented moment would have felt like for Annabel. I could picture her eyes opened wide, marveling in the simple delight of a spontaneous hug from her brother. I felt the same way last week, on the eve of my 28th birthday, listening to a voicemail from my parents and brother. The message featured the traditional Fischer family birthday serenade; in our family, such merriment is mandatory.
I played and replayed the simple song that my perfectly imperfect Mom, Dad, and Willie offered to me. “Happy Birthday to you, Happy Birthday to you … ” Willie played the piano, and sang along as well. And everything in me heard them—what they were really saying, what they were really singing. It’s what runs through every scene in the documentary, even the ones that hurt to watch.
Love, loud and clear.
One of the more difficult things people are facing today is looking for the right job. That was one of my big challenges when I graduated from college; I had the degree everyone wanted but not the experience. I had to find the right company that would start giving me the experience I needed to start moving up the “ladder” to a position I was happy with. A few of the things I considered while searching for a job was what education was needed, what the pay was, and if I would get benefits. But as a Supported Employment Manager for adults with autism, I learned quickly that the job search has to be taken in a totally different direction than it was for me.
Part of my job is searching for employment opportunities for the adults on my caseload, and also recommending someone on my caseload for a job that is found by someone else. When I first start searching for jobs for the individuals on my caseload, I think about whether the individual can actually do the job and also what can go wrong at the jobsite. There are many factors to consider when looking for a job for someone with autism, and different kinds of questions that have to be asked when interviewing with a manager. In the end, the final decision is not even mine to make. The job has be approved by the psychologist of the company I work for to make sure that the job is the right fit for the individual.
When going to speak with a manager about a potential jobsite, there are a few factors I look at to make sure the job is right for the individual. One of the things I look at is where the individual will be working for most of the day. Other factors include making sure the space is not too small, if there are a lot of people around, and how noisy the area is. Another key factor is what the individual will actually be doing. Finding a job with the same routine would typically be the best fit rather than a job in which the duties change every day. During the actual interview, the biggest question is how many hours will the individual be working? Our vocational program runs from 8:00 a.m. until 4:00 p.m. Monday through Friday and in order to access state funding, the individual has to work at least four hours each day. Not only do we want to meet the needs of the employer but we also have to meet the state requirements for funding for the individual. Once we have a jobsite and the hours, the next challenge is finding the right individual for the position.
At the company I work for, we have weekly meetings in which jobsite ideas are brought up. Each manager will submit a few names to see who would fit best. We do not have the final say on who gets the job; the psychologist does because ultimately we want to put someone working at the job that will not have a “problem” with the conditions and the hours. The ideal situation would be to find a job for everyone on my caseload and have them all working. As people are finding out, the job market is really hard for someone with a college degree and experience, let alone someone with autism. In the end, it is an ongoing process that does have the best reward: Seeing the smile on the face of one of my individuals working at a job that they love and having the parent thank me for everything I have done to help them find work.
Reilly has a girlfriend, apparently a serious girlfriend. At least they were pretty serious until they parted for the summer. She went back to her home in New York City and he came home to suburban Washington, D.C.
With as little violation of his privacy as I can manage, I am moved to share some of the important issues such a relationship raise, because they are probably not unique to our family. There are lots of questions for which I don't have answers, just worries.
The subject of Reilly's hypothetical future marriage always seemed to crop up at dinner. “When I get married, my wife and I will eat cake for breakfast,” he would say, when I told him he had to eat some dinner before dessert. Or when I tried to instill basic table manners, like proper use of a knife, he insisted he didn't need them. “Who will cut up your meat when I'm gone?” I asked, more than once. “My wife,” he'd say with a shrug. And I'd have a twinge of sadness. Would he get married?
Well, I learned two important things at his school's alumni/parents/students dinner dance this spring: Reilly might well get married someday. And his wife just might cut his meat for him. Reilly and his girlfriend, Ashley, were seated at different tables that night, so I didn't see if she cut his meat. But another student, Olivia, cheerfully cut the chicken parmesan for two or three other students at our table. She had tied Reilly's tie for him earlier in the evening. Nothing wrong with her fine motor skills, unlike many of her peers. If Reilly finds a girl like Olivia to marry, he might be all set!
But of course, meat cutting is a relatively minor issue. Shortly after I realized the seriousness of Reilly's relationship, I saw an ad in the New York Times Sunday Book Review for an e-book called “Asperger Love: Searching for Romance When You're Not Wired to Connect,” by Amy Harmon. I downloaded it immediately. It chronicles a budding relationship between two Aspie college students, Jack Robison (son of John Elder Robison, author of a bestselling memoir about his own Asperger diagnosis at age 39) and his girlfriend, Kristen Lindsmith. (Lindsmith has written several essays for AA16.) It's a frank, fly-on-the-wall view of the perils and pitfalls of a love match between two young people who have trouble with emotional and social cues, as well as sensory issues that complicate physical intimacy. It gave me real insight and a sense of wonder about Reilly's first foray into love/sex.
Like Jack Robison, Reilly isn't usually comfortable with hugs and touch, yet I see pictures of him on Facebook with his arms around Ashley. And the closeness required by those dormitory-style single beds? Yes, I remember college, but I have a hard time imagining Reilly is OK with that kind of closeness. And, remember the previously reported hygiene issues? I'm thrilled, yet shocked, that there's a girl that can overlook them, in such a confined space!
Reilly has had plenty of sex education in school, and as much as he would tolerate at home (which isn't a lot). So, protection? Well, let's just say the fine-motor difficulties cause me some worry. NYIT staff are pretty much on top of the relationship issues. Freshmen take a yearlong, gender-separated health course covering everything from nutrition to pornography. The school nurse has an office in the dorm, and she stocks condoms. The staff is prepared to check in with individual students on their knowledge and use of forms of contraception. Required social psychology class covers communication skills. It's a pretty safe place to experiment.
As I write this, I realize yet again, that much of this situation, and my worries, are normal. Neurotypical college students face many of the same relationship pitfalls and are also at risk for contraception failures and unintended pregnancies. And abusive relationships and the usual misunderstandings and broken hearts and other experiences that prepare us (hopefully) for adult life. But for young people on the spectrum, and their families, all of these perils are heightened.
Will Reilly be independent enough to maintain a marriage and family? I hope so, but we aren't close to knowing that yet. And, if I'm honest, I have to say I wonder about permanent solutions. Could Reilly realistically decide now that he doesn’t want children ever? Is that something we should talk to Reilly and his doctor about now? This honestly never crossed my mind until recently. I can't even get Reilly to tell me what he likes about Ashley, though he did admit to having some “communication problems” in the relationship from time to time, refusing to elaborate further. But, how are we going to have THIS way bigger conversation?
Parents of young women with ASD, I imagine, have perhaps even more to fear than I do. How do we protect our children, when they're no longer children, and they're out in the world without us?
When you're raising a child on the spectrum, you tend not to look too far into the future. You're pretty focused on getting through the day, or this week, or this school year. Thinking too far ahead can be overwhelming. Yet, Reilly continues to surprise me with his growth and progress. Who knows what his future will bring?
Let's just hope it isn't a grandchild for me, until we're both developmentally ready.
One day last week, I discovered a pile of Cameron’s school work on my coffee table. I’m used to these piles magically appearing. When there’s something from school that needs my attention, instead of handing it directly to me, Cameron leaves it somewhere where I can’t miss it. It’s almost like a mystical creature has paid me a visit. Not the Easter Bunny or Santa Claus, but perhaps it’s the Homework Elf or the School Fairy who has brought me something special. On the top of the latest pile was indeed something special. It was a certificate of completion for an intensive reading program Cameron had been working on throughout high school. I’ve noticed that the School Fairy seems to bring me things for which Cameron is very proud, and I wonder if the School Fairy brings them to save Cameron from embarrassment of mom gushing over him.
Another item of interest in this latest offering from the School Fairy was a Time Capsule. On the first day of school, Cameron completed a form indicating what he had already accomplished, what he looked forward to, and what he was worried about. Since I have been consciously hands off when it comes to Cameron completing his school work, I enjoy getting these unexpected glimpses into Cameron’s thoughts about school, and I realize how insightful he really is. In response to “One thing I have already accomplished,” he wrote, “Internship I know how to behave and work well.” Yes, I’d agree with that. I was surprised that he was most looking forward to Instrumental Music. I had expected him to hate that class, and even warned the teacher as much. His biggest worry was Anatomy and Physiology, which turned out to be a just worry, as it was the class he struggled with the most. School has always seemed like routine to Cameron, so I never really gave much thought to him worrying about anything or looking forward to something. It’s nice to know he does both.
I liked this idea of a Time Capsule, so I decided to look back at the columns I was writing at this time last year. "Miles to go Before I Weep" is about how I experience the milestones of others quite differently from the milestones on my own son. I must say, one year down the road, as Cameron and I prepare to attend the graduation ceremony of many of his classmates, and he prepares for a second senior year, much of what I wrote last year holds true. But oddly, I feel a little more at ease about what the future holds for Cameron, and his high school graduation doesn’t feel like quite as much of an abyss as it did last year. I don’t know why I feel more at ease, because I am no closer to finding a postsecondary solution for Cameron. While the options for consideration may not be changing, Cameron is. He is becoming more and more mature every day. And he has a self-awareness about him that I’ve not noticed in him before. I had heard about "developmental pops" happening beyond the school years, but never really held out hope for Cameron experiencing such a pop. You know, expect the worst, hope for the best? I was hoping, but not expecting. But I daresay, Cameron may be in the midst of a pop. This further vindicates my decision not to push for an on-time graduation. I may just get this patience thing down.
I’ve mentioned in other posts about my passion for theater and with that, my love for a great number of movies and plays. As I’ve gotten older and learned more about these movies I can say I’ve become a bit of a critic. Not an evil critic who blows the smallest things out of proportion, but a critic who appreciates a fantastic production no matter what. This has gotten my attention recently as I’ve started to watch more movies after work and on weekends.
A few weeks ago when watching “Joyful Noise” for the 10 millionth time, I was thinking about the teenage character Walter, who has Asperger's and with him growing up, I thought about what would it take to make the perfect movie to highlight autistic adults. There are already some great examples of movies involving adults with autism both as documentaries (“Wretchers & Jabbers”) and fictional works (“Story of Luke”). For me, though, the ideal movie would be a full-length documentary feature that would last about five hours.
The main thing for me would involve trying to get a group of 30 or so autistic individuals between 16 and 65 to capture different life stages. The first half of the movie would consist of a section called “My Story,” in which the individuals would describe their lives along with some of the highlights and challenges they’ve had with autism. Then the second half would be an open discussion of some best practices around topics such as transitioning into adulthood, applying for services, employment, relationships, autism reform, the future of autism, etc.
The final few minutes of the movie would go into detail regarding resources which are currently available for people to learn more about topics surrounding adults with autism. This would include books, blogs, websites, journals, magazines, etc.
A year after the movie was completed, the people involved would be filmed for a sequel in which they would discuss what happened in the year since filming the last movie along with again a discussion of some of the most related autism topics with the twist that it would be focused on how things have changed in that year ...
If making this movie was possible, it would be fantastic because the people in the first two movies could help recruit and think of creative ideas for more movies with more adults on camera.
This is how I would plan the perfect movie through my eyes. I know that doing movies like these might not appeal to the general public, but wouldn’t it be great to see an effort like this? The result would be an all-out informational exhibition on autism focusing on as many areas of the spectrum as possible. This is my thought of the perfect movie to highlight autistic adults.
A bracing sea breeze rustles the tree branches overhead, and pelicans and seagulls swoop around us. We're in a resort paradise for the weekend, thanks to my generous in-laws. My husband Jonathan and I sit back, holding hands. It's not easy to find two chairs poolside, but we have persevered. Behind my sunglasses, my eyes scan the crystal-blue water. At first, I'm just searching for our niece and nephew, splashing around with other kids their age. But once I've spotted them, I keep looking. Even though it's irrational, even though I know he's home with our parents in New Jersey, I find myself looking for my brother Willie.
It's not surprising, really, that I should associate Willie with this pool. Willie is the fish of our family; he loves the water, and will stay in for hours. Chilly conditions, fatigue, prune-y skin—these are small considerations for him. If I squint, I can pretend that he's nearby, fitting his goggles, preparing to go under.
So strongly do I sense his presence that I start actually doing the mental gymnastics that is my big-sister routine. This involves scanning the environment and trying to anticipate Willie's needs in an unfamiliar setting. It's figuring out how to include Willie in as many activities as possible, but also making space for solitary pastimes that allow him to unwind. It's striking a balance between structure and spontaneity in a place that isn't home. It's not easy.
Fast-forward to the next day, as Jonathan and I wait our turn for a sailboat ride on the bay. Sailing is one of our favorite things; when we were here four years ago, we had dolphins swimming alongside our small boat. (Dolphins!) I know better than to expect them to join us today, though; there are too many motorboats racing around. The couple who took the sailboat out before us say that the wind is really picking up, and encourage us to take care. We nod, eager to get moving. We've sailed together before; we'll be fine.
We borrowed a kayak yesterday, but it doesn't compare to this. The wind filling the sails, the speed—it's like we're flying across the water. It's the fastest I've ever gone in a sailboat, and it's exhilarating, if a bit scary. The wind takes us farther and faster than we'd expected. All of the sudden, we're barely in sight of the resort. We know we need to turn around (“go about” in sailing terms), so we coordinate several attempts. Each time, the boat whips around and then stalls; the wind from the opposite direction is too strong. If we were experts, we'd know what to do.
We're not experts. Going about quickly doesn't seem to be working, so we try a slower turn. This is a mistake; it gives the strong wind time to fill our sails, pick up our lightweight boat and tilt it off balance. In one inexorable moment, I feel us go sideways. Uh-oh.
To my right, Jonathan falls just before I do. We've capsized. I am submerged. The boat is over my head; for one frozen instant, I am terrified that I won't be able to get out from under it. But I push off, surface, breathe. I call out, with a barely-concealed fear, Jonathan?
It's the only thought in my mind. Not Glad we're wearing life jackets or What if we get in trouble for this? My thoughts are distilled to this single word.
Fortunately, he's fine; in fact, he's trying to hold on to the boat as the wind pulls it out to sea.
Presently, we're rescued, back on land. We sit poolside once more, shaken by the sudden end to our sailing experience.
I think to myself: Maybe Willie loves going underwater because it effectively turns the volume down on the world. Perhaps he just loves the sensory experience of floating. But I have a hunch that it's something more. Being underwater has a way of stripping away the excess. It's a crash-course in clarity, in what's important. Air. Breath. People. And when you come to the surface at last, the light is brighter, illuminating everything: the land, the sky, a beloved face.
Once in a blue moon, everything works out the way it’s supposed to, despite the bumps in the road we encounter along the way. Today was just such an experience for me. My rigid Aspie nature wanted to balk at any number of these bumps that I ran into between the hours of 9:00 a.m. and 3:00 p.m., but somehow, my wanting-to-avoid-conflict-at-all-costs Aspie nature won the day. Allow me to elaborate.
In my role as Head of Career Education at a private school for students with developmental disabilities, I am responsible for the oversight of the annual Employer Appreciation Luncheon. I have managed, during both years that I have been head of my department, to avoid taking on all responsibility for this undertaking, which in and of itself is a little bit of a miracle. By surrounding myself with people I trust, I have been able to relinquish just enough control to see that things can work out well even when I am not hyper-vigilant about every minute detail. So far so good. But even accomplishing that first step of allowing others to take responsibility for much of the planning was in no way a guarantee that the components I was responsible for would all run as planned. I admit, I did forget that for a time today.
It started at about 9:00 a.m., when I called staff into my office to preview the end-of-the-year slideshow that would conclude the luncheon today. This presentation is my baby, it has been for the past three school years, and every year I strive to make it a step above the year before. I was finished ahead of schedule this year, a miracle in and of itself! So I quite confidently called my staff in, sat them down, turned down the lights, and the presentation began … without sound. This was a problem, because the music that accompanies the presentation is an integral part of the presentation, and many hours were spent choosing the music and timing the presentation to fit the selections. I was perplexed, but in no way panicked. I switched to my desktop computer, restarted the show, all went well, including the music, and it was an enjoyable preview. My staff dispersed to return to their own last-minute preparations, and I set about “making sure” that the show would run on my laptop with accompanying sound.
Except that it would not.
It took less than 10 minutes for me to reach the horrifying, but undeniable, conclusion that the music had not saved as part of the presentation on my flash drive. It was imbedded in my office computer, and in my “cloud drive” which I was unable to access on my laptop because my laptop seemed to have forgotten how to link to my school’s wireless connection. Okay, time to call our trusty tech guys … who did not answer their phone. Okay, time to see if I can burn the music to a CD that I could run concurrently with the slideshow. Felt a bit late-20th century, but desperate times call for desperate measures, or some such cliché. I asked (begged?) a staff member to hunt down a blank CD for me, and I unburied the four songs in question from my computer and set them up to burn. Have I mentioned that I’ve never actually burned music to a CD before? Yeah. But how hard could it be? Upon realizing that I did not have a blank CD in my office, I officially slipped into panic mode. I could feel the anxiety coursing through my blood. That set me off to an ever greater degree, because I could feel shut-down mode looming on the horizon.
Then the CD would not take my music. It kept ejecting from the computer, with no just cause or accompanying explanation. Okay. I could say I was sick and had to leave. I could say my daughter was sick and I had to leave. I should have been preparing my remarks for the luncheon—including presenting three student awards—rather than dealing with what felt like an unsolvable problem. Rigidity swept in. I was going to totally drop the ball—probably already had. This was a disaster. How could I have been so stupid as to not check this on another computer the night before? You name it, I was thinking it. Fortunately I was not yelling out loud at myself, anyway.
Then, like a gift from the heavens above, a colleague appeared at my door. This particular colleague is the head of our technical support, and in less than 10 minutes he had all of my music embedded in the slideshow and saved on my flash drive. It took all the restraint I had not to kiss him full on the mouth. Crisis averted.
And as for the speeches? I did not get them written. I managed to wing it rather nicely at the luncheon—which I actually do better with anyway, I come across as more natural—and my assistant who had done the bulk of the luncheon planning gave the awards in my stead. More crises averted.
As for the music … there was one more moment of panic when it turned out that we didn’t have the correct sound system in place. We ended up holding the microphone up to the laptop speaker, and the music was heard. All’s well that ends well.
It really did end well. It wasn’t perfect, but it was really good, and I can take the lessons learned into next year’s planning—and know that learning to trust myself and those around me could be the greatest lesson to come out of this above all.
I was ready for the meeting, but still felt unprepared.
We were to discuss a change in programming for Madison—that part was nothing new. But it could be a program, perhaps the program that would stay with her for the rest of her life: her adult services program.
In March, my Madison turned 21, that magical age for most where they are considered an adult with some highly celebrated privileges. But for those with special needs, that age is the gateway into a world most haven't experienced since a very young age—a world without educational supports.
Madison has been in programming since she was 12 months old. She tested 25 percent delayed in a local Infants and Toddlers Program and started receiving services both in our home and in a nearby specialized school. I can't remember a time when there weren't goals and objectives for her with highly-skilled therapists and teachers trained in how to bring out the knowledge hidden behind the autism and behaviors.
But now, it was time for Madison to move from school to vocation, from an Individualized Education Plan (IEP) to an Individualized Service Plan (ISP).
We'd been planning for this day since she was 14. We knew she had limited academic potential, so early on we began identifying vocational skills that she could develop. She knows her numbers, shapes, colors, and can follow simple instructions, so sorting became a viable goal. She still has trouble with counting, though, and skips those apparently tricky numbers, 16 and 17, from time to time. She can put lids on small containers and take them off, but someone will need to double check the final count. Still doesn’t quite have the "how many" question perfected.
But she tries. And with prompting and supervision, she succeeds most of the time.
The adult services director showed me the schedule for the day. "It's very different," she began. "The pace is slower with fewer demands."
I wondered if that could be a good thing for Madison since the academic demands often brought on behavioral upsets.
She explained to me that Madison is a pioneer of sorts, the first new student to be accepted into their long-standing adult program that traditionally served more involved adults, many nonverbal with significantly lower skills than Madison.
I listened to the director speak about the program, their plans for expansion, and the other adults in the current program. I tried to envision my Madison in that classroom and its new routines.
No speech services. No occupational services. And large chunks of the day for vocational and life skills.
But it was the tone of the director's voice that spoke the most to me.
Ever the realist, she noted that Madison would be the highest functioning in this inaugural group of transitioning adults. "We will make every effort to make sure that she continues to develop as much as she can.”
"Will she still go on outings?" Madison loves "going," whether to the mall, movies, or out to Wal-Mart or Target. I wouldn't want her to lose that confidence and flexibility.
"Absolutely," she said, and then described some of the outings the group would attend. And then she paused and added, “In my opinion, education is not a place, it's an experience."
Her words hung in the air as I let the meaning seep in. She was right. Whether governed by an IEP or an ISP, education is the business of living, the experiences we have. It’s the business of continuing to learn no matter what your ability or disability.
Madison will learn from her new peers in this adult services program as I am sure they will learn from her. And with the steadfast commitment to learning through experience and seeking those opportunities, I am finally prepared to be a pioneer with my daughter.
I'm currently reading a book about helping adults with learning disabilities achieve independence. I'm not sure if I like it or not, so I'll withhold the title, for fear of inadvertently driving up readership of a book that is bunk. It may not be bunk, but I'll err on the side of caution. I've been struck by a few things in the early chapters of this book. First of all, the author goes to great pains to identify LD as a separate and completely different disability from autism or mental retardation. But as you read on, the picture of LD becomes a broad spectrum that I couldn't help feeling empathetic to as a parent of an ASD young adult. I'm still a fairly newcomer to the autism party, and vividly remember feeling almost relieved to belong to a more concrete diagnosis group. But now as I step out of the ASD circle and look back at LD, I realize we parents are all fighting the same battle. And as the author points out, we often feel very alone on the battlefield, but needlessly so.
The second thing that struck me in my early reading was not a new concept, but it triggered something new within me. The author was describing the mislabeling of LD students of being "lazy" or "not trying hard enough," and how detrimental these labels are to the students. Yes, I'm nodding my head, it's awful for someone to be told they're not trying when there is a limit to what they're capable of ... But ... Wait just a minute ... I know for a fact that there have been times Cameron could have in fact done better. Just because Cameron has LD, ASD, ADHD, or any other acronym should not absolve him from having to try! I worry that a certain diagnosis becomes a trigger for individuals to just opt out and play the disability card. Or, even worse, parents, teachers, and even society in general allows and even expects these individuals to opt out with little pushback.
I gave Cameron a large helping of pushback just the other day. (If you ask Cameron, he'd probably tell you he gets a daily dose of pushback, thank you very much.) One of Cameron's regular duties in the house is taking the garbage out. The night before trash day, he collects the garbage from all the bins in the house and rolls the recycling and garbage to the curb. I've tried to improve his productivity in this task by suggesting he take replacement bags with him from the start, as opposed to revisiting each bin twice—once to empty and once to replace bag. I think Cameron finally came around to seeing the sense of my suggestion, but it wasn't immediate. I wrote off his reluctance to change as a stereotypical autism trait. Based on that trait, I failed to address the fact that Cameron would take the plastic bag out of a bin and replace it with a new bag even if the old bag had two tissues in it and an empty toilet paper roll. The other day, my husband observed this trash collecting habit, and suggested a better approach. I was in a different part of the house, but I only needed to hear part of my husband's comments to understand what Cameron's reaction must've been. "If I'm you're manager at work, and I tell you to do something differently …"
Aha! Allowing Cameron to do things his way just because he's reluctant to change is not helping him prepare for the workplace. Why didn't I think of this before? When I then gave further instructions to Cameron about not leaving the lid to the trash bin on my bathroom countertop, he grunted and stomped his foot. In my mind I'm thinking, "You're fired!" I launched into a rather heated lecture about taking instruction. (Armed with my angry eyes, just like Mr. Potato Head in “Toy Story.”) Cameron got the message. And I reiterated the message in a much more conciliatory tone 20 minutes later. I'm sure Cameron will "try harder" next week. Because he can.
We are now in our fourth week at Cody’s new program. Each Monday and Thursday morning I have been staying with him at the facility from 9:00 to 11:00 a.m. to see how well he will do. My hope was to start gradually backing off and letting him stay at the facility by himself with the other clients and staff. But it doesn’t look like he is ready for me to start doing that.
Even with me there he has a hard time staying focused on the curriculum and the staff appears skittish about taking the lead in directing him in what to do.
There are a lot of worksheets involved, which do indeed teach good skills. Then they usually have a craft or play some sort of game which also involves developing fine motor function and problem-solving techniques. But sitting still for that long of a time is not Cody’s forte.
The program overall seems to be a very good program. And the other clients seem to enjoy it and stick to the tasks at hand very well. It seems though, that none of the other clients have the same issues with staying on track with completing the given tasks as Cody does. Perhaps it is because none of the other clients appear to be at the same place on the autism spectrum as Cody.
Cody will usually do well for about the first 45 minutes with a few prompts from me to stay in his chair and complete the worksheets. But after that he starts to become agitated and anxious. I try to take him outside for a few minutes so he can pace up and down the sidewalk and expend some of the nervous energy. Then he seems ready to go back in. But when we return to the class schedule, Cody is only able to stay focused for another 15 minutes or so. Then he is back to jumping up out of his chair to walk around.
One of the directors has put forth a good effort toward redirecting Cody when he does this. But the director has other clients to attend to as well. Cody listens to him initially, but it seems as though his attention deficit grows more prevalent as time wears on.
Cody’s case manager called last week to see how well he was doing. I explained what I had observed and she suggested he might do better without my presence. But I strongly question that. When I have to leave the room to use the restroom, I come back to find Cody wandering around the classroom and rambling on about this or that in a continuous fashion. At this point the director often attempts to converse with Cody about whatever subject he has mentioned while simultaneously assisting other clients. But if this is all Cody is going to get out of the program then it hardly seems worth our while.
So is it me? Am I jumping to conclusions too quickly? I say we are in our fourth week but the true sum of that is eight mornings, two of which we have missed due to illness and a prior engagement. However, knowing my son as I do, it usually doesn’t take me very long to be able to assess when things like this are going to work out and when they are not. And I have to say it isn’t looking terribly hopeful right now.
The case manager also suggested that it may work better for Cody if he had one day with a one-on-one aide and one day per week at the day program. I would be willing to try that, but I still don’t believe Cody will be able to make it through the entire six hours of a typical program day.
It may seem logical to perhaps cover the allotted hours in three-hour shifts by taking Cody to the program four mornings per week. But we’re talking about a 50-mile round trip each day, and this was all supposed to take place in my absence. The objective was for Cody to become acclimated to the class and work environment first. Then to increase attention span so he could focus on tasks in that he might be given in a job setting. It was also to teach daily living, safety and social skills. But if I’m going to be the one to direct Cody, teach him and keep him calm and focused on tasks, I can do that at home and save time and fuel costs. I’m starting to believe that may be the right way to go.
It’s getting late, but I pick up the phone and press Send anyway. I’d promised to check in with my Mom, and I want to keep my word. (Plus, learning what’s actually happening will help me stop coming up with worst-case scenarios.) This week, Mom is caring for Willie by herself, as Dad is on a long-awaited South American surfing trip. When he returns, they’ll switch off; Mom will fly west to spend time with her parents and help them with a forthcoming move. And when Mom picks up, I’m relieved by what I hear. She’s had one particularly challenging afternoon with Willie, but on balance, they’re both all right. Of course, I knew there was every chance that this would be the case. (But there was also every chance that Willie might have a major meltdown and hurt Mom and himself in the process.)
The afternoon in question, however, could have been much worse. On what was supposed to be a simple walk through the neighborhood, Mom had to deal with a bolting, overly-excited puppy (Chevy) and an increasingly agitated Willie. While trying to hold on to Chevy’s leash, Willie became frustrated, yelling and lashing out at Mom. To top it off, all three were being pursued by the chaos’s catalyst: a bizarrely aggressive deer that followed them for several blocks. Fortunately, neither humans nor animals were harmed in this strange scenario. In fact, Mom found inspiration in it. She’d been watching a dog trainer on TV, and the crisis gave her an opportunity to practice her newfound skills.
The TV trainer’s mantra is “be the pack leader.” In basic terms, being the pack leader means asserting a calm-yet-confident energy with animals and people. I’ve written before about the importance of my maintaining a low-stress state when Willie is upset. Now, Mom is practicing calm, decisive behavior with both Willie and Chevy. Now, when Chevy gets overly excited or stressed, Mom is teaching Willie how to respond with peaceful, decisive energy. And who knows? Perhaps learning techniques to calm and command Chevy may help my brother to de-escalate his own behavior, in time.
In turn, hearing Mom’s story gave me the encouragement I needed to practice exuding calm authority in my own life. In the past, I’ve held myself back from pursuing what I want, believing that some imaginary prison bars were real. As a “supersibling,” it’s hard for me to articulate my needs and express “unacceptable” emotions like anger. Intellectually, I know that leading my life in this way is actually a powerful act of service for others. But acting on the knowledge? That’s a whole different story.
And I’m not the only autism sibling who struggles with the concept of personal authority. In a recent Chicago Tribune piece, “Special Needs for Special Siblings,” writer Alexia Elejalde-Ruiz interviewed Margaret Dickey, 32, a social worker living in South Bend, Indiana who has two autistic brothers. Like Willie, Dickey’s brothers exhibit aggressive and self-injurious behavior. And like me, Dickey learned to hide her true feelings about their challenges. Elejalde-Ruiz writes, “Wanting to be strong for her parents, Dickey felt there was nowhere to direct her anger or sadness, so she kept it in, which sometimes felt like she was wearing a mask. In adulthood it continues to be difficult for her to set boundaries or identify and express her emotions.” Zing. Dickey and I have walked similar roads and learned specific coping mechanisms along the way. When Willie melts down, I’m tempted to shut down and numb out, and I still apologize for things that aren’t my fault. But today, I am choosing to give myself grace. Like Mom and Willie, I’m still learning to lead. And I have to smile as I picture Mom, Willie, and Chevy with a deranged deer pursuing them.
Sometimes, being “the leader of the pack” means dismantling old beliefs and self-limiting behaviors. And at other times, it means acting with common sense and doing what any animal would do. Sometimes, it’s as simple and instinctive as recognizing danger, and herding your pack homeward.
A few months ago, I wrote about my passion for learning new things. Whether for pleasure or practicality, I find that picking up new and useful information is one of my favorite things to do. I was looking forward to learning more about the craft of writing from some elective college classes I registered for this spring and summer. However, the experience thus far has not been what I had anticipated. Of the four classes I had signed up for, only one remains. To say I am disappointed by how things have turned out so far would be a massive understatement, but I have chosen to turn this into a valuable learning experience as well.
I have only taken one class so far, and even then, I only attended for two weeks. It was a creative writing class in which I, along with the rest of the class, did a series of timed writing exercises to generate new ideas which we could later develop into fuller stories. We would then read what we had written out loud to see how everyone’s approach to the same exercise differed. I felt this was a perfectly fine set-up for the first week, and I would have been happy to continue on in this manner.
Unfortunately, this was not to be. I withdrew from the class after the second week due to a disagreement I had with the instructor concerning my writing style. I felt that she was subtly pressuring me to write in a certain way, one which I felt was not appropriate for me. I felt very uncomfortable to say the least, and I tried to defend my position as best I could. There was a point she made about my work that I did not agree with, and I explained why I had made certain decisions regarding my writing style. She was insistent, though, on having me follow the style she wanted, and I felt it would be a direct conflict with my personal ethics.
I spoke to my parents about what had happened, and they agreed that the instructor should not have been trying to make me adhere to a writing style which clashed with my beliefs. They also helped me to cope with the fact that I would not be attending the rest of either of the classes that this instructor would be leading. I had trouble with this at first because I do not like to leave anything unfinished, but I realize that I will sometimes have to walk away from some things because of my principles. Any disappointment I might feel during those moments will only be temporary because I can take solace in knowing that I stood up for myself and rejected what I believe are harmful and unwanted influences. It will always be better for me to stay true to who I am rather than to be someone I do not want to be.
This experience taught me that sometimes there will be things in my life which I might not agree with, and I do not have to put up with them. If I am able to, I can just say no and, hopefully, move on to something better.
The one class which I wanted to take for fun, one focusing on superheroes (just in time for the summer movie season) was cancelled due to low attendance. I am a bit disappointed that I will not be able to take it at this time, but if it is ever offered again, I would be glad to attend.
I have one class remaining: a career strategies class. I still have hope that this class will go as planned. I think it could be very helpful to me at this point in my life. I have many projects in motion at this time, and I am excited about the possibilities that this class may offer me additional insight in moving forward with my career in multiple directions. Even though I am down to just one class now, I still plan on being very busy this summer with both my career and some fun activities. I am learning that this type of disappointment is only temporary. I also continue to learn more and more every day about life’s lessons, and I am taking this information to heart and putting it to good use in my life.
It's time to talk about money, and sex. Both very difficult topics for families of young adults on the spectrum. I'm not sure which is more difficult, but maybe it's sex. So I'll start with money, and leave sex until my next column. I can hear Reilly's sigh of relief as I write this!
As we know, it's expensive to have a child with ASD. A recent story on MSN Money cites an Autism Society estimate that the disorder costs the country $137 billion annually. A lifetime of caring for a person on the spectrum runs to the millions—$3 .2 million according to the society, with behavior and other therapies costing $40,000 to $50,000 per year. A supported residential setting for adults with autism can cost as much as $100,000 per year.
"Even if no new instances of autism occurred starting today, the number of adults who would potentially turn to the human services delivery system for services and/or supports by 2030 will be 500 percent higher than it is today," according to a statement the society provided to MSN Money.
Staggering.We don't hear much about this in the mainstream news. Congress is mired in partisan politics, still arguing the merits of Obamacare and “entitlement” programs, which may be lifesavers for many families and adults with ASD. The costs of the autism explosion have not yet come close to the top of the nation's to-do list, yet they are foremost for families with children making the transition to adulthood.
We sent Reilly to a private special ed high school that cost about $30,000 per year, for four years. We made the commute from Northern Virginia to suburban Maryland because there are no comparable schools on our side of the Potomac River. Some of the students at his school were funded by their Maryland or Washington, D.C. school districts, but our county school system doesn’t do that. We could have kept him in public high school, and it might have been OK. But we were lucky to have the choice.
Postsecondary school options are even more expensive, with tuition at or above $50,000 per year. There are no public university options for our son in Virginia. Community college is more affordable, but not geared to provide the supports that many students on the spectrum need. Financial aid, I suspect, is in short supply.
And we need to look beyond “college” into Reilly’s adult life. Last year, my husband and I started working with a woman who specializes in financial planning for families with special needs children. One of the first things she suggested was that we apply for Social Security benefits for Reilly, but we couldn’t do that if he had any funds in his name, like his 529 College Savings Plan and other money set aside in his name for education. Before we can file for SSI, all that money has to be spent. High school and Reilly’s first year at NYIT have largely taken care of that “problem.”
Supplemental Security Income, if he is eligible, will provide a modest monthly income, but more importantly, healthcare insurance through Medicaid after he turns 25. (Thanks to Obamacare we can keep him on our policy until then.) But even after we file and if he is eligible for benefits, any money that comes into his name in the future can knock him off the benefits, which means we have to look at our own estate planning. Our advisor suggested we set up a special needs trust, which leads to a whole new set of issues: Who should the trustee be? It has to be someone we trust, who will still be alive when we are gone. Certainly that suggests that anyone close to our age is not the right candidate. And what arrangements do we make for a successor trustee if the person we pick can’t do it or isn’t around to manage it? The trust, we are told, has to be set up in such a way that he has no control over it, or it will make him ineligible for SSI, which is the whole point. Who will have his best interests in mind and be willing to spend the time it will take? How can we anticipate now what Reilly might need in 30 or 40 years, after we are gone? Do we fund it now, at some cost to our own retirement, or plan to leave enough in our estate to take care of him at the risk of leaving less for his brother and sister? Do we have to worry about whether the other kids feel they have been unfairly treated? How do we fund it? Insurance? What kind? (We have learned more about “guaranteed” and “whole life” and “first to die” policies than we ever cared to know. And how morbid is discussing a “first to die” policy with your spouse?) How much does he need, and when will he need it?
We are working our way through these issues now. Our goal is for Reilly, and his brother and sister, to be independent, self-sustaining adults, and we’ll put all the resources we have into that goal. Resources that I fully understand we are lucky to have. These decisions are difficult, but how much more so for families who are not as “lucky” as ours?
Update: Since this column was written, the injured man has passed away. Our condolences go out to his family.
A horrible tragedy has occurred within Cameron’s school community. The father of a second grade student was critically injured, and his life hangs in the balance. This is a man I knew by sight but not by name. I often saw him in the afternoons when he would come to pick up his son. Prior to pick-up time, this man would regularly be seen running on the roads near the school, as he got his workout in while waiting for dismissal time. Since I would see him after these workouts, and I didn’t know him by name, I would affectionately refer to him as “Sweaty Runner Guy.” Who could we ask to help with Parents’ Association events when our usual suspects were spread too thin? “Why don’t we ask Sweaty Runner Guy?” I would suggest. The nickname was not meant in a mean-spirited way, and everyone knew who I was referring to, as he was such a regular presence at school.
Last Tuesday, this man who was the epitome of a healthy lifestyle was hit by a bus while running near the school.
I find this so tragic on many different levels. The stark reality is that life is unpredictable. I’m sure this young, uber-healthy father never in his wildest dreams imagined that being hit by a bus was in the cards for him. But the cold, hard truth is life is fragile. And as difficult as it is to face the death of a loved one, that difficulty is only magnified by the administrative nightmare that often follows the Grim Reaper’s visit. Then, factor in a surviving child with special needs, and your mind really starts to swim. No wonder so many of us put off planning for the eventuality of our own death. But isn’t taking care of these details the very least we can do for our surviving loved ones?
I’m writing this column as a lecture to myself (and my husband). For more than a decade, we’ve brought up the subject of death administration, but never gone much further than general discussions. It’s a hard subject to deal with! Who would take care of our children? We have no family members living near us. Do we subject our children to relocation to another state or country (my husband’s family lives in Europe) in addition to being subjected to the loss of their parents? And that’s just one of the issues we’re left scratching our heads over. As Liane Kupferberg Carter noted in her column, “Seeing Clearly,” most special needs parents simply feel as if they must live forever. But truthfully, the more you think you need to live forever, the more you need to plan for your death.
So where does one even begin? I remember a few months back hearing a segment on NPR about this very subject. A woman named Chanel Reynolds, who lost her husband and was left to deal with the nightmarish administration of his death, started a website to give the rest of us a place to start. The website is aptly named Get Your Shit Together!—a name that reflects the importance of getting down to the nitty gritty. As Reynolds notes on the site, “The reality of my financial situation hit me like a ton of bricks: Our income immediately went from ‘healthy’ to ‘zero,’ we did not have an emergency fund, our life insurance policy hadn’t been updated in five years, we had no disability insurance. Without short term help from friends and family and the life insurance that came later, I would have quickly lost everything, including my sanity. I was frighteningly vulnerable, it’s embarrassing, but it’s true. And it is true for many of you.” And—as far as I know—she doesn’t have a kid with special needs.
I’m sure I’m not the only parent out there that is so focused on taking care of the day-to-day drama that imagining the drama without being in the driver’s seat is unfathomable. Everyone needs to be prepared for the inevitable. Those of us with children with special needs have even more preparation to do, and very important reasons to do it. So on top of all you do, take some time and figure out who would do what you do if you were unable to do it anymore. Think of planning for your death as insurance—something you hope you will never need, but can help avert disaster if you do. Then keep working on that living forever thing.
In May of 2011—19 years after I was first diagnosed with autism at age 4—I was on my way to receive my undergraduate degree from Seton Hall University. It was a day of many tears and hugs from family members, classmates, and friends. The road to my undergraduate degree had ended and now new beginnings were about to start. For me the new beginning would be pursuing a Master's Degree from my alma mater (in a somewhat ironic twist for a kid with autism) in Strategic Communications.
Fast-forward to May 2013--two years, 11 classes and 36 credits later. Last Saturday was my hooding ceremony and I now have my Master’s degree. The program listed Kerry Magro and had a little asterisk next to my name signifying that I graduated with distinction, a high honor for me.
When I was preparing for my undergraduate graduation I wrote a poem that I shared with Autism Speaks called “This One’s For You”. In the poem I discussed how blessed I was to have overcome so many obstacles to get to where I was at that moment. It was also a poem in which I shared with the world my satisfaction that I was able to prove wrong so many of the naysayers. Those individuals who told me I couldn’t and wouldn’t achieve in this world because of my disability.
This time around I thought I would have the same type of feelings to write down but to my surprise they are completely different.
One of the incidents that could explain these feelings happened at the hooding ceremony right before we received our diplomas. We were all standing outside of our gymnasium divided into different sections based on our specific degree programs. During that time we all had champagne and were able to reminisce before being asked into our school’s gymnasium for the proceedings to begin. Almost an hour before this occurred I was with my family who were diligently trying to get this small graduation hat to stay on my ginormous head. About 15 bobby pins later, when we thought we connected the hat on well enough, I met with my friends for the event.
Then the hat started getting loose on our way into the gym. I was freaking out because no professors seemed to be there, and I was just looking around the place for an answer. Three of my classmates responded whose basic consensus was “Kerry—we got this” and helped lock that hat on so tight it wouldn’t have come off if I had decided to do cartwheels around the gym.
That moment signified a lot to me in my overall social development. When I was a kid, I didn’t have that many friends who would have helped me in a situation like that. As much as I strived for good grades, I strived to get that social interaction I desperately wanted as a kid and finally had as an adult.
It made my whole college experience start to round out for me. My undergraduate graduation made me reflect about being able to say I did something, and the graduate degree made me reflect on the friends I’ll have made for a lifetime. I truly did graduate with distinction. I have friends who would help me out, a high honor for me.
These types of successes are dreams that I’ll always cherish and fuel my fire that I hope I can use to motivate myself to go out there and help others on the spectrum make their dreams come true. Everyone deserves to have a similar feeling to the one that I have now.
“I’m just not sure what to do, or how to help her,” my friend Marie (a pseudonym) said. Her voice trembled slightly. Beneath her words I could hear what she was trying to say: I want so much to do the “right” thing for my sibling, but this situation is so messed up.
Marie was talking about her sister, a bright, talented woman who has been struggling with ongoing health issues. For years, Marie has stood by her sibling in these recurring challenges. As such, Marie wrestles with questions I know all too well: How involved should I be in the care of my adult sibling? What do I do if I see a potentially serious problem no one else in the family is willing to openly acknowledge? Where does my responsibility begin and end? And so, when her sister’s condition took a turn for the worse, Marie was—quite understandably—upset.
Marie and I spoke for over an hour, though it was a weekday morning. Even as a little voice in my head was nagging at me with discouraging comments like You should get back to work and You’re being lazy, staying on the phone so long, I knew better than to take it seriously. In fact, I reminded myself that what I was doing in those moments was the “real” work. When I come to the end of my life, I won’t regret time spent forging true connections.
And I listened, I knew without a doubt that being Willie’s sister had prepared me to empathize with my friend. Having known Marie for years, I knew that she didn’t talk about her sibling’s issues very often. In fact, I sensed that she couldn’t have talked about her sister’s struggles with just anyone. Marie has met Willie. She’s heard our stories; she’s read my posts and columns. She knows about the meltdowns and the fear and the ongoing challenges. She also knows about the bond between us, the shimmering moments that allow us to see beauty first. And knowing these things gave her the freedom to tell the truth about how much she loves her sister, and how hard it can be to keep that love alive.
Marie and I did talk about practical considerations and concrete interventions, but on the whole, she needed a friend more than she needed advice. Indeed, Marie described how her sister’s needs often dictated the family’s decisions, how she’d cast herself in the supportive-sister role for years. In turn, I was able to speak from my own experience, saying, “When you’re trying to figure out what to do, you need to consider both your sister and yourself, your own sanity. It’s easy to get swept up in the drama, but there’s some serious fallout if you stuff down your emotions, your anger and fear. You may not be in crisis, but your needs matter, too.”
She said, “At times I just long for a more ‘typical’ relationship with my sister, you know? A more even footing, maybe. But that’s not how it is with us. And sometimes, I just wish it could be easier.” I nodded. If I had a dollar for all the times I’ve wished for an “easier” relationship with Willie, I’d be a very rich woman. But after all that wishing, I’ve come face to face with a immutable truth: in our hard times, the only way out is through. And, as a corollary: The darkest times give us depth, and greater tenacity. The shadow-days make what really matters stand out in sharp relief.
As such, what I had to offer in that conversation was less my words than the substance of my life. Marie could talk to me about her family’s difficulties and her “above and beyond” sibling responsibilities, knowing that I’d understand a situation with no easy answers. “Thank you,” she said, “for writing what you write. You have no idea how much reading your stories has meant to me.”
Marie and I hung up, and how strange it was. Though nothing about our circumstances (or our siblings) had changed, an intangible something had altered. We weren’t alone in our unanswerable questions, and that made all the difference.
When I graduated from college, I found out quickly that to support myself in the “real world” I would have to work two jobs. After working two, sometimes even three, jobs for about three years I could tell it was getting the best of me. Working up to 85 hours per week to pay bills finally got the best of me and I had to quit one of the jobs. I was able to explain the situation to my night job and leave on good terms with the manager. I have found with my job now, I have to be that voice for autistic adults when work has become too much for them. Some of the individuals I work with have two, three, and sometimes four, jobs but they can’t really express when the work has become too much for them. So, I have to look for clues and indications regarding how they are feeling.
When I first started my current job as a Supported Employment Manager, I had one person on my caseload that had three different jobs in one week. He was working at a clothing store on Mondays all day, working at a warehouse store Tuesdays through Thursdays, and was working at a grocery store on Fridays. This person was very independent and loved working at all of these places, so who was I to say that he had to give up one of the jobs. When this person lost the job at the warehouse store due to downsizing, everyone else was worried about him not working all the time now because that was what his routine was. He was able to tell me that he wanted to work another job and actually knew the job he wanted to do. It was not hard to find him another job, but that is not always the case.
Another individual was working four different part-time jobs. Coming back from a vacation, I found out that he had been assigned an additional job working in a restaurant. I could tell right away that the individual was working too much because he started exhibiting behaviors that we had not seen since he started our program. In spite of pressure to keep him working all the jobs, I finally decided to pull this man from two of the jobs—a volunteer job and a paid position.
Needless to say, some people were not happy that I had pulled him from a paid position. But in light of the return to challenging behaviors, keeping five jobs didn’t seem to be the right answer. In the end it all worked out well; the individual became more relaxed and loves what he does now with three jobs. It is nice to know that a parent would trust me enough to find what is best for their child. Especially when the individual lives with the mother and she has to take care of him after work. While I don’t always know what’s right for the autistic adults I work with, I do know that sometimes they need someone to stand up for them, pay attention to what they are trying to tell us, and be a voice when work overwhelms them.
April wasn’t only Autism Awareness Month. It was National Stress Awareness Month too.
Last month I started having difficulty seeing. Initially I attributed it to my new eyeglasses. Everything seemed to be pixilating in the center of my left eye. It wasn’t just those annoying floaters. Any text I stared at seemed to fade out, as if a shimmering dark cloud was moving across the page. It felt like holes in my vision. I had a headache that waxed and waned but never quite disappeared. I, who pride myself on my proofreading skills, was suddenly missing typos. Writing became hard. Reading was exhausting. Driving was a white knuckle experience. I stopped doing the New York Times crossword puzzle because I couldn’t make out the numbers in the grid.
I Googled my symptoms. I know, I know. Bad idea. Of course I scared myself. I read about posterior vitreous detachment—strands in the vitreous gel inside the eye, common after cataract surgery, especially if you are nearsighted. Retinal detachment. Pituitary tumor. Macular holes. Ocular migraine. But with ocular migraine, I read, the symptoms resolve between headache bouts.
My ophthalmologist sent me to a retina specialist. She dilated my eyes. “I see a very small hemorrhage, but I don’t think that’s causing your symptoms,” she said. “You can get that just by bending over. I’m going to torture you a little bit. We’ll inject some contrast dye to get a look at the blood vessels behind the retina.”
For a nanosecond I pictured the eye clamp scene from “A Clockwork Orange.”
As soon as she left the room I whispered to my husband Marc, “The ‘torture’ part is just injecting the dye in my arm, right?”
“I’m sure it’s the dye,” he said reassuringly.
I signed consent forms, and a technician took more than a dozen temporarily blindingly bright flash photos. I returned to the doctor, my sight now a blurry pink haze. She clicked through the images on the computer screen. “That inverted smoke stack shape?” she said, pointing. “Classic presentation of central cirrus.” Cirrus? Like a cloud formation? I pictured wisps of water vapor drifting over the surface of my eye.
“The good news,” she said, “is that it generally resolves with time.”
“So what causes it?” I asked.
“We see this most in men in their 30s and 40s, who have ‘Type A’ personalities.”
Which I am assuredly not.
Why yes. We’re intimately acquainted.
And the last few months have been intense. My autistic son Mickey has landed in the emergency room twice: for kidney stones, and for a painful abscessed cyst requiring surgery. We’re struggling to figure out what he will do once he turns 21 this year and exits the school system. (That’s what they call it—exiting. Not graduating. But that is another column.) Last month was filled with psychological assessments for Mickey. Educational evaluations. Doctor appointments. EEGs. Seizure medication changes. A new consulting engagement out of state for Marc that requires him to live all week in a hotel.
I went home and looked up “central cirrus.” Google corrected me: central serous. It had nothing to do with wispy or funnel shaped clouds. I squinted at the screen to read: “Central serous retinopathy: An eye disease which causes visual impairment, often temporary, usually in one eye, characterized by leakage of fluid under the retina. Stress appears to play an important role. CSR can re-occur causing progressive vision loss.”
It’s not just the episodes of acute stress. It’s the chronic concerns that grind me down. Sometimes I feel like the Bill Murray character in the movie “Groundhog Day,” locked in a time loop and endlessly repeating my days. When Bill Murray’s character eventually learns the lesson he most needs to learn, the loop ends. He moves on to a next day. But does that analogy hold up? When you have a child with special needs, you’ve signed on for life. Do you ever truly move on?
I hope so. Because like the proverbial canary in the mineshaft, my eye is an early warning system. It’s telling me I need to learn something critical: how to pace my anxiety. If I don’t figure out how to modulate my reactions to the stress in my life, I’m going to be in serious—not only serous—trouble.
“I’m getting a doctor’s note for a live-in masseuse,” I tell Marc.
But beneath the joke is a darker truth: Stress kills you.
And special needs parents need to live forever.
Friday night, Cameron attended his high school prom. This wasn’t his first prom, as his school invites all high school students to attend each year, and Cameron had attended the year before last. But the last time Cameron attended, I drove him, and he asked me to pick him up early. This year, he was going with six other students, in a limo. Cameron has always been fascinated by limos, and this luxury ride was partially how I enticed him to attend the prom this year. You see, in order for Cameron to attend the prom, he would miss a night of work at the pizzeria. This was a hard decision for Cameron … until the limo became part of the deal.
I missed my deadline for submitting this column so that I could report on every last exciting detail of Cameron’s prom experience. I just knew this was going to be a break out moment for Cameron. I’m regularly caught by surprise by Cameron’s break out moments, but this one was so predictable I could practically taste it. This prom had the promise of being something special. Instead of going solo, Cameron would be with a group of “friends.” Cameron would be riding in a limo, instead of excitedly pointing it out as it passed by. He would be staying out past midnight. (I had to coach him on the fact that it would be okay to be out late. I reminded him that he’s 18 now, and staying up past 10:30 is something he can do, and should do every now and then.) He was going as part of a group, and maybe he would even ask a girl to dance. He rejected my offer to rent him a tux, but did don the same coat and tie he wore two years ago. I eagerly stayed awake until he arrived back home, anxious to see a certain glow on his face.
So maybe I got a little ahead of myself. Whenever I predict a break out moment for Cameron I should remind myself that break out moments happen when least expected. Cameron arrived home with more sleep in his eye than twinkle. Waiting until the next morning for details didn’t prove to be a more successful strategy of intel gathering than grilling him when he walked in the door. No amount of open ended questions provided any insight into the evening. In response to “What was the best part of the night?” I got silence. I’m not disappointed or even surprised by Cameron’s lack of enthusiasm towards his prom experience. I just wish … sigh … I just wish Cameron would exhibit some form of excitement about something. And when I say “excited” I mean “excited” and not “anxious.” I wish he would look forward to special events and not fret over them. I wish I had more insight into how he experiences these events. They seem to come and go without much reaction from Cameron. Does he experience them differently internally? Is his lack of noticeable expression part of his language-based learning issues? I wish I knew.
What I really wish is that what seems to make Cameron the happiest wasn’t to be left alone.
First published October 7, 2011.
Our family originally qualified for Supplementary Security Income for Cody when he was four years old. I was a single mother, not working at the time and my husband, Bill, and I were not yet married. So qualifying for this benefit with a four-year-old boy with autism was a pretty cut-and-dried process.
But then a few months later, I went back to work and Bill and I were married soon after. That’s when everything changed. Our family income had increased past the limits set forth by the Social Security Administration and Cody’s SSI benefits were terminated.
After Cody turned 18 things changed again. Since Cody was legally an adult, we were allowed to reapply for SSI benefits based solely on his personal income and any assets he owned. Thus, obtaining benefits for us was a relatively simple process.
We were fortunate in the sense that when I called the local Social Security Office, they were very straightforward about telling us exactly what we needed to bring with us in the way of documentation and that on the day we would come to apply for benefits, we would need to complete a form upon our arrival and what kinds of questions would be on the form.
After completing the forms from the Social Security Office, we needed proof of identity which we supplied in the way of Cody’s Social Security card and birth certificate. Then, we also had to supply proof of Cody’s autism. So, we provided a letter from Cody’s pediatric neurologist which stated that he had treated Cody since the age of 11 and it also gave a synopsis of his diagnosis. And lastly, in order for the Social Security Office to be able to make funds payable to me, as Cody’s mother and guardian, we had to show our certificate of legal guardianship which we had obtained through the family court system approximately a month before Cody’s eighteenth birthday.
Once we had all of our paperwork together we went to our local Social Security Office, filled out their required form and waited for our interview.
Finally, our names were called to meet with one of the agents. Upon submitting the completed form and the paperwork we had been told we needed to supply to verify that Cody met the criteria, the agent asked questions regarding when Cody had originally been diagnosed, whether he had ever received SSI before, and his personal income and assets. The process took about 30 minutes and then we waited for final approval. From start to finish the entire process took about a week’s time. We filed for Cody’s SSI in the same month as his eighteenth birthday and started receiving benefits the following month. But other parents and guardians I know have filed at a later date. Once their cases were approved by the Social Security Administration, they received retroactive funds going back to the month of the individual’s eighteenth birthday.
The funds we receive can now be used for a portion of household bills such as mortgage payments, utilities, telephone, groceries and other household items. We can also use the money for transportation, Cody’s clothing expenses, any medical bills not covered by Medicaid or other health insurance, furniture for his room or to pay for any educational/life skill materials he might need. But the funds we receive do not nearly cover all of Cody’s monthly expenses.
Every year in the month of June, we receive a reconciliation form that we must complete to account for how we used the total funds for the entire year. Given the fact that there are four people in our household, we can include 25% of our household bills, in addition to Cody’s clothing, medical, transportation and other personal items. Even with the past cost-of-living increases that have been awarded to recipients who receive monies for SSI and other Social Security programs, the total funds we receive per year have yet to exceed two-thirds of the sum total of Cody’s share of household bills and his personal expenses. Nevertheless, it has been a great blessing and I am most grateful.
At present, I’m not a parent. I don’t have a son or daughter of my own, but if ever I do, I have a very specific item at the top of my parenting to-do list. Be forewarned—it’s not practical. It’s not about cloth diapers or nursery decorating or party planning or anything like that. It’s simply this: Write that child a song. The reason I feel so strongly about this is that my mother sang “my song” for me. And I remember how it used to make me feel: protected, cherished, beloved. When I was older, I would trace the lines as I read them in my baby book. My mother’s distinctive half-print, half-cursive script read: “Caroline, Caroline/ Oh that little girl of mine/ From the start, you stole my heart/ and oh, I love you, Caroline … ”
When my younger brother Willie was born, my mother wrote a song for him too. It was simple and easy to remember, like mine. “Little Willie, my sweet Will/ Close your eyes, be sleeping still/ Mother, father, sister too/ Send their love, sweet dreams to you.” As I recall, I wasn’t jealous of the fact that my brother also had a song. On the contrary, Willie's song was immensely reassuring.
When my brother was diagnosed with autism, I was too young to fully understand what the word meant. All I knew was that something was different about Willie. I knew that he wasn't like other children I'd meet, and that our parents needed to spend extra time working with him on various therapies. I knew that he loved order and lining things up, and that he hated loud noises. As I grew older, I came to understand more about autism, and my brother's ways of thinking and being. Yet listening to my brother's song served to remind me that we shared a common core. With or without autism, we were—are—welcomed with love.
These songs might seem like small things, but they were significant. As we grew beyond childhood, our songs weren't woven into the fabric of our daily life. On the contrary, our mother was selective. She would save our songs for times when Willie and I were most in need of reassurance. When I was teased at school, when I grieved my brother’s difficulties, when Willie was too upset to fall asleep at night … these simple songs were the music I heard. As time passed, she’d sing them less and less, but whenever she did, I knew what they meant. Between the lines, they told us: You have always been loved. And nothing can change that.
As a young adult, I used to think that maybe I was weak for needing that reassurance, that the songs were too simple, childish maybe. But as an adult, I have learned the difference between childish and childlike. And I have come to see that the simple solutions are often the best ones. (Getting a dog, for example, is such an everyday decision, and yet having Chevy in the house has already helped Willie.) And when I try to “figure out” autism with my mind alone, I get overwhelmed fast. The questions I really ask, the answers I really need, are those that come from the heart.
And I have a feeling it's the same way for Willie. These are the questions he asks with his actions, his tears after a meltdown: Am I loved, even though I've done these unlovable things I wish I could take back? When I hear the songs our mother wrote, I also hear the answer: You are. And nothing can change that.
Of course, there’s more than one way to show such love. Our mother wrote us songs, but our father suggested our names. My brother is the third William in our family; he’s named for our father and grandfather, and his name means, “Protector.” It speaks to me of solidarity, of heritage, connectedness, and honor. And me? I could have been a Caitlin or a Mary Louise, but my father insisted on Caroline. The name comes from the French word for Carol: A Song of Joy.
Last Tuesday my sister Connie had to have a surgery.
Here's what really gets to us about the holiday season. It's not the way advertisers assault us, though that's troubling.
By the time you read this, I will have returned from a week’s vacation in Florida with my family.
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....
The search for a postsecondary program for a student like Cameron is not much fun. It’s actually pretty awful.
Last week I had the opportunity to head to Washington, DC to attend the “Autism Speaks to Washington” summit.
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