She did it. She wore the cap and gown.
I knew she would “graduate.” We have been checking off therapy and educational goals since she was 13 months old. From the doctor’s examination when she was 9 months old that morphed into regular developmental testing, to the Infants and Toddler’s program with its speech and language goals, to at least 15 years’ worth of IEPs, Madison’s completion of her high school certificate program at age 21 was well-documented and assured.
But the question for me was, would she be able to process with her fellow students? Would she be able to wear the cap and gown, march down the aisle, stand in front of parents, peers, faculty, and guests, and have “still hands” and a “quiet voice,” two prompts so hard for Madison to follow, much less sustain, for the entire length of a ceremony?
I could hear her before I saw her.
The room was filled. A slide show entertained us, showing the grads in all phases of their school work and life. Lots of smiles, hugs, and love beamed from that screen. My eyes already began to water.
“EEEE,” I heard from the entrance door.
“That’s our Madison,” Pat, our longtime family caregiver, whispered.
“Oh please, Missy, hold it together, sweetie,” I whispered more to myself than to Pat as I planted my nose into my camera. I just had to get one good shot of her wearing that cap and gown. We’d worked so hard for this day to come. I pinched my eyes together to focus as the first tear slipped out.
And the next thing I knew, there she was. Dressed in her purple gown, hat perched on her head with the tassel swinging, she moved in line with her class.
“EEEE,” she said again, flapping her hands to her face. Her aide took one hand and whispered something. Madison looked my direction and said, “Mommy,” in her low deep voice, and then continued with the group as they passed by us to their seats.
Madison stood tall during the Pledge of Allegiance, her hand over her heart on the silky graduation gown. She sang “The Star Spangled Banner,” head swinging her tassel to its beat.
Then the ceremony began. Each child was recognized by their primary teacher. Madison was praised for her color-coordinated wardrobe, her vigilance and polite persistence in requesting “schedule please,” and her musical abilities in both song and dance, noting her preference for Mary Kate and Ashley.
Then it was time to get the diploma. Her name was announced. She moved to the speaker to get her certificate.
Madison shook hands, turned to the audience, and gave a slight obviously well-rehearsed fist pump and then shouted I her best Barney-the-Purple-Dinosaur voice, “Hip, hip, hurray!”
The audience roared as I madly tried to capture the moment, snapping photos with the fully released tears now blinding my view.
Then she “EEEE-ed” again, and flashed her sneaky, “proud-of-herself” grin and sat back down and waited while the others took their turn. Her foot tapped her hard-bottomed satin shoes to the rhythm of each teacher’s words. I thought she would stim on the swinging tassel or try to take off the hat, but she resisted. She did hand-flap and “EEEE” a few more times, but in general she was patient and compliant until it was time to recess.
As she stood, she looked around and bellowed, “Hip, hip, hurray” once more as the group left the building.
“She’s got that right,” I said to Pat as we watched our little Madison file into the reception.
Hip, hip, hurray, indeed. She rocked that cap and gown.
Ah, summer vacation. A time of family togetherness … like it or not.
For the past three summers, I’ve gone through the same Extended School Year (ESY) dilemma with Cameron. I’ve historically opted out of sending him to summer school, but then left myself with the challenge of filling his days. This year, I never really considered sending Cameron to ESY. After all, this is the last summer before he graduates from high school. If I can’t plan his summer, what am I going to do when he graduates? The short term-ness of the summer should be a breeze compared to the great unknown that looms ahead of us this time next year.
And because I can’t be satisfied with the challenge of filling Cameron’s days, I’ve added an additional challenge to the mix. Since my husband is either traveling or working from home, and Cameron’s job at the pizzeria is over until the college students return to town, I thought it would be a great idea to spend four weeks at my mother’s seaside home. Yay for us! But … Cameron doesn’t like the beach, or the heat, or being out in the sun. So what’s a boy to do for 28 days? Get a job, right? Well, that was my plan, anyway. Now all that’s left to do is implement that plan.
It all seemed so perfectly clear when I devised this plan. “What’s Cameron going to do this summer at the beach?” family members would ask. “Why, he’ll get a job!” I would say. But now that I’m about to embark on the execution of that plan, I’m stammering over how to introduce Cameron to potential employers. Do I immediately play the autism card, or do I let the hiring manager figure it out on her own? I’m sure most 18-year-olds don’t have their moms with them when they ask for a job application. And I’m even more sure most 18-year-olds don’t have their moms fill out the applications on their behalves. I feel a bit like I did in the days of early diagnosis and temper tantrums in the grocery store. I feel like I need a sandwich board around my next that explains why Cameron is the way he is, and why that’s (mostly) okay. Maybe I’m being optimistic thinking a sandwich board would suffice. Maybe I’m being over-the-top optimistic thinking that in this job market, a job opportunity will be available for Cameron.
By the end of the day, I’ll have a better understanding of just how crazy an idea this was. I’m pounding the pavement with Cameron, and we’ll see what the day brings. I’m crazy enough to think this is going to work, but I’m realistic enough to know it might not. If the latter is the case, I’ll be taking suggestions for how to fill a person’s day at the beach who doesn’t like being outside. I guess he could spend his time researching recipes for all the crow I’ll be eating.
Going to the Social Security office for anything can seem like a battle, but more so when you are trying to establish benefits for someone for the first time.
My husband, Bill, will be 62 in August and is taking early retirement. So last week we embarked on a mission to the Social Security office to get things in order. Little did we know how it would affect Cody.
After we were met by security at the door and made our way through the maze of ropes we went through the metal detector.
We were then told to select an option on a computer that explains why we were there. We did and then we waited.
Finally, they called Bill’s name and we were directed to a booth where we were met by the woman who would be processing his application. She asked many of the logical questions such as his date of birth, on what date did he plan to retire and was he aware that he would receive a lesser amount each month since he was not waiting until his full retirement age. For Bill that would be 66 years of age.
Then she sat and entered the information into her computer and punched numbers on her calculator.
After a few moments she asked Bill if he was supporting any disabled children.
“Yes, but he’s my stepson,” Bill replied.
“How old is he?” she asked.
“He’ll be 27 this month.”
“And he lives with you?”
“How long have you supported him?”
“Does he receive SSI?”
“How much per month?”
Bill answered and all became quiet once again.
I thought perhaps we were nearing the finish line on this visit but wondered why there were so many questions about Cody.
“Okay well his SSI will stop and if he receives Medicaid that will probably stop too,” she said quite matter-of-factly.
I was stunned and confused. I didn’t think Cody’s SSI should have anything to do with Bill’s income whether it was Social Security retirement or income from employment. Cody is well over 18 years of age and considered by the Social Security Administration to be financially separate from any income Bill and I receive. We asked what Bill’s retirement benefits have to do with Cody’s SSI.
The woman stated that Cody would be entitled under the Family Benefits provision to receive a larger sum of money from the Social Security Administration as a dependent disabled child than he would from SSI on his own. And sometimes depending on how much that income increases a person may no longer qualify for Medicaid.
When we left, I was still confused. Cody’s income would only be increasing by about $130 per month. He would still be well in what be considered the poverty level.
When we arrived home I called the Missouri Family Support Division and asked for information regarding what would happen with Cody’s Medicaid status when he no longer received SSI but received Family Benefits from Bill’s retirement instead. We were informed the only change that may happen is Cody might have to go on the Medicaid Spend-Down program.
Under the Missouri program the base income must be no more than $814 per month. If a recipient makes more than that they can still qualify for Medicaid coverage by either providing to their Family Support Division an equivalent amount of medical receipts for out-of-pocket expenses, or by writing a check to the Missouri HealthNet Division for the difference between the set limit for maximum income and the actual income they receive.
Learning this information was a huge relief given the fact he will no longer have Bill’s group health coverage and we will be on a fixed income. In Cody’s case our out-of-pocket expense will be very minimal.
All in all it was a good day. Bill’s retirement benefits are now established and the small added expense for Cody each month will be more than offset by the increase in his check from the family benefit he will receive under Bill’s retirement. In the end we considered it a battle won.
Editor's Note: Please check with your state's Medicaid office for specific information regarding benefit programs in your area.
For further information on public funding such as Social Security and Medicaid, click here.
I was holding my breath when the doorbell sounded. “They’re here!” I cried. My third-grade self was hosting her very first sleepover, and boy oh boy, was she nervous.
True, I’d been to slumber parties before, but until that evening, I had never played hostess. But this was my eighth birthday, and what I wanted more than anything else was to have a sleepover. I invited my closest friends: two next-door neighbors, and two girls from school. I’d planned the dessert menu (cake with vanilla frosting and chocolate-rainbow nonpareils) and slumber-party itinerary (movies, games, and gossip) well in advance. And I’d also spent time talking with my parents about Willie’s involvement in the party.
Though I didn’t know much about autism at the time, I did know that a giggling group of girls might be overwhelming for my little brother. (This was before Willie started struggling with aggression and self-injurious behavior, but even so, he could cause a ruckus if he wanted to.) And even if he remained calm, my friends would get a healthy dose of Willie’s idiosyncrasies. If he spent time with us, he’d invariably sing Disney songs and quote movies ad nauseum. He’d run in and out of rooms, making proclamations that didn’t make sense unless one had memorized the script for “The Little Mermaid.”
In short, I was afraid that he’d be himself, and that my friends wouldn’t know how to deal with that. My third-grade self was concerned about making a good impression, about having a “cool” party. I was self-conscious about my own appearance, too, since I had a cast on my left arm. A fall on the front lawn a few weeks prior had resulted in a simple fracture, and wearing a cast was challenging. The girl who just wanted to blend in was forced to stand out. And I write with my left hand, so having a broken left arm hampered me in my quest for perfect penmanship. (In the third grade, having an elegant cursive script was definitely on my priority list.)
With all these factors combined, there was a lot at stake at this sleepover. I was a bundle of nerves, but fortunately, my parents had had some valuable preparatory conversations with both my brother and me. As the big night approached, we went over each aspect of the evening together: who would sit where at the supper table, how long Willie would stay downstairs in the living room with me and the girls, when Mom and Dad would say goodnight and move Willie through his evening routine in the upstairs bathroom. In short, we had a game plan.
Every step of the way, we knew how Willie was going to be included in the festivities. We had contingency plans in case he started to seem agitated. And most importantly, I had a sense of solidarity. I felt like our parents were with me in my desire to make this special evening go well. They didn’t criticize me for feeling nervous; instead, they understood that inviting a group of people over to our home was a step of faith, a real social risk. Looking back, I am struck by how they met me where I was—afraid, uncertain, excited, a bundle of contradictions. Wanting to both include my brother and have him go away. Wanting to make a good impression on my friends, and wanting to trust that they’d accept me and my family as we were.
All the planning paid off, and the evening flew by. After the first few nerve-wracking minutes, I relaxed and started having a good time. Willie was at his best—relaxed, kind, and totally into the festivities. In looking at photos from that evening, I am struck by the tongue-sticking-out fun in his expression, and the sidelong look of relief in mine.
Even at that age, I remember thinking that that night was exceptional. As a special needs sibling, I knew better than to take “smooth sailing” for granted. I knew that life did not often go according to plan. And when things did go well, gratitude was the right response. Now, twenty years later, I hold these pictures in my hands, giving thanks once more.
There has been a lot of wonderful, poignant writing on AA16 about how autism affects siblings, much of it by Caroline McGraw, sister to Willie. Recent events have me focusing on Reilly's future and his siblings' part in it. Re-reading some of Caroline's columns, I catch glimpses of Reilly's sister, Brigid, and am moved to write about her.
Brigid is my middle child, sandwiched between two fairly high-maintenance brothers. Her older brother, Ben, is brilliant, funny, talented and at least moderately ADHD. He was medicated as a child, but by high school rejected the medication. He finished college at 24 with a degree in political science, but is pursuing a music career, not the most stable of professions.
Brigid's younger brother, of course, is Reilly, who has been in Special Education since preschool. Naturally, his needs seemed to dominate much of our family life. I don't know if I would say that Brigid got lost in the mix—she's always been vocal and dramatic, hard to ignore. But it's possible she felt guilty about needing anything. And she seems to have that middle-child peace-maker trait, at least to some extent. She's a little more sensitive to family unrest than her older brother, and has a higher tolerance for some of Reilly's quirks than Ben does, sometimes trying to mediate their squabbles.
Brigid seemed to breeze through elementary school, in a Gifted and Talented program. But her first year in middle-school was a near disaster. Like most kids that age, she was struggling to form an identity and she seemed buffeted by the crazy winds of puberty. We made a difficult decision to send her to a small boarding school about an hour away from home starting in 8th grade, and held our breath, buying tuition insurance, just in case. It worked better than we could ever have hoped, and she thrived. I think it gave her a chance to focus entirely on herself and her needs. She graduated from that lovely little school with honors and is entering her senior year at NYU this fall, majoring in educational theater.
Over lunch recently, I asked a now-21-year-old Brigid if she thought that part of her success was because we took her out of the family dynamic when we sent her away to school. Tears sprang to her eyes and she answered a resounding “yes.” She didn't elaborate—I'm not sure she has the words. But it's easy for me now to see how our family situation formed who she is and who she will be.
I tried not to make the older two kids feel responsible for Reilly. Yet I can see the effects of an autistic sibling on Brigid's career choices. I'm not sure how to feel about that. I was surprised when, while still in high school, Brigid volunteered as a counselor at a residential summer camp for developmentally disabled teens and young adults. She came home with a new empathy for her brother, and she wrote an entertaining college admissions essay about the experience. This past semester, she volunteered with a theater program for special needs teenagers in New York, called Daytime Moon Creations. Now she says she wants to pursue a Master's degree in Special Education, and hopes to use her theater training in the classroom. I'm proud of her ambitions, but I didn't intend for her life choices to be so related to her status as a sibling of a special needs child. I wonder if it is a “girl thing” or a middle-child thing, or if it's my fault that she feels called in this way. Her older brother doesn't seem to be as defined by the experience as Brigid does, but maybe he just expresses it in a different way.
And I worry that whatever help Reilly needs in the future, when his Dad and I are out of the picture, will fall to Brigid. We made her the trustee of the special needs trust we set up for Reilly, reasoning that she's much better with money, and details, than is her brother Ben. We think she's more likely to have a stable career (despite her ties to the theater) than her vagabond musician older brother. She readily agreed to the arrangement. But now I worry that it won't just be about the money and Brigid may have to shoulder more responsibility for Reilly than we intended. That seems to be the lot of the sibling, whether we like or not. And it's part of what families do. It's reassuring to know she'll be there, and my fervent hope is that Ben will step up, as well, if it's necessary. Meanwhile, we'll do what we can to insure that Reilly is prepared to live as independent a life as possible.
I got a little peek of what the future might hold one recent evening when all three kids were home. My husband was working late, and after the kids and I had dinner, I went immediately to my home office to make phone calls for my volunteer job on a political campaign. I put my three adult children in charge of cleaning up the kitchen. Normally, I would have given them each a separate job to do, but I was in a hurry, so I left it to them to divide the work. I sat in my office and listened to the ensuing squabble. I could picture what was going on downstairs. Ben, the funnyman, was busy snapping a dish towel at his brother and sister. Reilly was trying to avoid doing any work, and Brigid was indignant that they weren't helping. I resisted the urge to step in. “They'll need to learn to work together,” I told myself. I closed my door and immersed myself in the phone calls, eventually noticing that the commotion in the kitchen had stopped. When I came downstairs later, I complimented them on the great clean-up job. Brigid wasn't thrilled with the boys' performance, but seemed to get enough work out of them that she was prepared to let it go.
There is a special place in heaven for sisters like Caroline McGraw, and Brigid Donovan.
As I wrote in April, Cameron has purchased his first car and has been trying to obtain his Learner’s Permit. At the time of that column, Cameron had taken the knowledge exam twice. He has since taken it twice more. This exam became an indication of Cameron’s future for me. I needed to know he could pass this test. I needed to know that this test, developed for the general population, was within Cameron’s capabilities. Too often I find myself looking at Cameron’s report cards full of A's and B's wondering what good grades from a special needs school with its modified curriculum and specialized teachers really reflect. Are Cameron’s grades a true indication of his abilities? Or are they like those end- of-the-year Certificates of Achievement that no one goes home without? Are good grades the only kind of grades given in this setting, because who could possibly fail a student with learning disabilities? After all, that would be like kicking someone when they’re down. So because I have a hard time assessing what Cameron is really achieving in school, this knowledge exam at the DMV became the standardized test that meant the most to me.
Cameron’s fourth attempt at the knowledge exam came last week. I tried to maintain positive energy, thinking I could influence his result through good vibes. But as I sat in the waiting room with Cameron—who was clutching ticket number 1035 and the index cards I had made as study aides—I felt growing anxiety as each number was called over the loudspeaker. Waiting at the DMV is anxiety-inducing for anyone. How could I expect my son, who exhibits a fair amount of anxiety in ANY situation, to wait through all the number calling, and then take a multiple choice test which hasn’t been carefully crafted to his learning style? Cameron was pacing, and so I stepped into the ladies’ room to let a few numbers go by without my heart racing with each announcement. It was then that I decided I needed to rethink things. Perhaps having his car in front of the house was too much pressure for Cameron. It was wrong for me to pin Cameron’s future to passing this one stupid test. I then decided that when we got home I would discuss selling his car to take the pressure off.
After about an hour of waiting, Cameron’s number was called. And then there was more waiting, and finally he took this test. While I waited, I tried to figure out how to manage our disappointment. Just then, Cameron came around the corner with a tight look on his face, and he was eyeing a place to sit down … in the line among the people who had passed the test. What happened next was a made-for-Hollywood moment:
“Did you pass?”
He ran over to me (as I was hooting and clapping) and wrapped me up in a bear hug while he planted multiple kisses on my cheek. Never have I experienced such an outpouring of emotion from him. Later, when we were at his celebratory dinner, I asked him why he was so excited to have finally passed. Without hesitation, he answered, “Well, partially because I’m excited to learn to drive, but mainly because it proves I can do it.”
I’d have to say this has been one of my top five parenting moments. (I had originally typed “10” but backspaced and decided five is more appropriate.) As it turns out, passing the knowledge exam was just as important to Cameron as it was to me. And Cameron wanted to prove he could do it, as much as I wanted him to prove he could do it. I guess it’s true what they say. Great minds think alike.
Today a first of its kind event called “Autism Pride Week” is concluding in North Carolina. When I first heard about it I was curious about its overall impact. We all know about Autistic Pride Day that started a few years back and I wondered if this was an outgrowth. Autism Pride Week as I watched from a short video via WLOS TV station is a week focused on being proud of being autistic. It highlights “Autism Pride” in ways that may be familiar, but extending it over an entire week allows it to be much more comprehensive.
What made for icing on the cake for me is that this event has the complete support of the community where it is being hosted. This support could not be more apparent. The Mayor of Asheville, Terry Bellamy, proclaimed the week of June 16th as “Autism Pride Week”. This is a great step to the possible reccurrence of an event like this in the future. As someone who plans and implements events it makes a huge difference to have the support of the local government.
This is absolutely a step in the right direction. This is a topic that is going to be contagious, as “our society” grows older and more educated. We have a wide spectrum out there and as much as we see the problems associated with autism highlighted we also have to look at the happiness that many autistic people enjoy each and every day. As an autistic adult my overall sense of pride and acceptance of myself has changed dramatically as I’ve grown up. I’m happier with myself than I’ve been in years and that’s why I can support something like this so openly. Events like this should be welcomed with open arms. Currently Autism Acceptance Month is April.
The question, which I think is worth being raised, is simple. If the numbers of those with autism continue to grow dramatically, then why shouldn’t events concerning or highlighting and celebrating us increase as well?
I commend the fantastic efforts done here and wish this week will be adopted in many of our communities in years to come.
As mentioned in last week’s column, my family’s story has been featured in a short documentary entitled, “My Brother,” by filmmaker Edwin Mah. Since the film will be submitted to festivals, it’s not available for public viewing at present. But I can share how I felt, and what I experienced in watching it.
Viewing the documentary was, in a word, wild. Even though I’d actively participated each step of the way—digging up home videos, scanning old photos, doing myriad interviews—I was still shocked to see the material on-screen. There was a definite sense of self-consciousness and vulnerability. (People are going to see me at that long-ago dance recital in a bright orange hula skirt!) But I reminded myself that that was the point of the whole project—to share the story of my relationship with Willie, in hopes that other siblings and family members might feel a sense of solidarity and understanding. To be sure, each family’s experience of autism is unique and complex, but certain themes in our story are universal.
One common challenge, for example, is that of parental attention, and how it’s shared between autistic and non-autistic children. There’s a poignant part of the documentary that touches on this topic. The scene in question is actually a home video, featuring me in a figure skating competition. At the time, skating was my life. I dreamed of going to the Olympics and being the next Michelle Kwan, and I willingly sprang (well, stumbled) out of bed at 5:00 a.m. in order to be on the ice by 6:00.
In the home video, I’m wearing a royal blue skating dress. It’s secondhand outfit—skating dresses are expensive—but it fits perfectly, and the sequins make it sparkle like new. My mother has helped with makeup, and fixed my hair in an elegant braid. My father has shuttled me to early-morning practices, and he and my mom have worked to pay for ice time and private lessons. This, therefore, isn’t just my moment. It’s our moment.
Then, in the middle of my program, there’s a cry, which sounds close to the camera. It calls to mind a baby fussing. In the documentary, this subtitle flashes: [Willie crying.]
“That’s not Willie crying … that sounds like a baby,” I say to my husband as we stare at the screen together. I’m wrong, though. That pitiful sound is coming from a younger Willie, as evinced by the dialogue that follows.
Dad (encouraging tone): It’s nothing!
Dad: That’s right. That’s right, Willie. No crying.
Willie: Get away from me. (This is a line from a movie, one that Willie repeats when he’s upset.)
Dad: Willie, as soon as Caroline’s finished skating, then you can use the camera.
No, it’s Daddy’s turn.
Willie: It makes me … (The subtitle says, “unintelligible,” but I’m pretty sure the word that follows is “angry.”)
It’s surreal, watching this scene. So much is swirling within … frustration, incredulity, and, mostly, awe. Awe of my parents, who navigated moments like this every single day. Awe of Willie, that he kept it together even though he was upset that the focus was on me. And even awe of my past self, skating her heart out, with no thought to a scene in the stands.
Later in the film, I’m calling home, calling to talk to Willie. As the scene progresses, I gasp; I didn’t know that the filmmaker managed to pick up the audio from our phone conversation.
Our dialogue goes like this:
Willie [enthusiastically]: Hi Caroline!
Me [warmly]: Hi Willie! How are you?
Willie: I’m doing good.
Me: Did you have a good day at work today?
Willie: I had a good day at work.
Me: Are you happy I’m coming to visit?
The subtitles mark Willie’s next line as “unintelligible,” but it wasn’t, not to me. The sound was muffled, but I heard him.
“I’m happy,” I repeat to my husband. “That’s what he just said.”
The words stuck in my throat. After everything we’ve been through, after everything I’d seen on film … I’m happy. It seemed at once the simplest of statements, and the most profound.
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?
As my journey through adulthood continues, I am constantly becoming aware of new and unfamiliar responsibilities as they present themselves.
On a trip to Arizona three years ago, my son Mickey asked to visit the airport gift shop. He rummaged through a display of stuffed animals.
Since I wrote of Cameron’s postsecondary funding dilemma last week, not much progress has been made.
Over the last year or so I’ve talked to parents who have children that have been newly diagnosed with ASD.
Whenever I share stories of my family's experience with Willie's aggressive and self-injurious behavior, I'm always concerned that the accounts will seem over the top to some ...
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