It's time to talk about money, and sex. Both very difficult topics for families of young adults on the spectrum. I'm not sure which is more difficult, but maybe it's sex. So I'll start with money, and leave sex until my next column. I can hear Reilly's sigh of relief as I write this!
As we know, it's expensive to have a child with ASD. A recent story on MSN Money cites an Autism Society estimate that the disorder costs the country $137 billion annually. A lifetime of caring for a person on the spectrum runs to the millions—$3 .2 million according to the society, with behavior and other therapies costing $40,000 to $50,000 per year. A supported residential setting for adults with autism can cost as much as $100,000 per year.
"Even if no new instances of autism occurred starting today, the number of adults who would potentially turn to the human services delivery system for services and/or supports by 2030 will be 500 percent higher than it is today," according to a statement the society provided to MSN Money.
Staggering.We don't hear much about this in the mainstream news. Congress is mired in partisan politics, still arguing the merits of Obamacare and “entitlement” programs, which may be lifesavers for many families and adults with ASD. The costs of the autism explosion have not yet come close to the top of the nation's to-do list, yet they are foremost for families with children making the transition to adulthood.
We sent Reilly to a private special ed high school that cost about $30,000 per year, for four years. We made the commute from Northern Virginia to suburban Maryland because there are no comparable schools on our side of the Potomac River. Some of the students at his school were funded by their Maryland or Washington, D.C. school districts, but our county school system doesn’t do that. We could have kept him in public high school, and it might have been OK. But we were lucky to have the choice.
Postsecondary school options are even more expensive, with tuition at or above $50,000 per year. There are no public university options for our son in Virginia. Community college is more affordable, but not geared to provide the supports that many students on the spectrum need. Financial aid, I suspect, is in short supply.
And we need to look beyond “college” into Reilly’s adult life. Last year, my husband and I started working with a woman who specializes in financial planning for families with special needs children. One of the first things she suggested was that we apply for Social Security benefits for Reilly, but we couldn’t do that if he had any funds in his name, like his 529 College Savings Plan and other money set aside in his name for education. Before we can file for SSI, all that money has to be spent. High school and Reilly’s first year at NYIT have largely taken care of that “problem.”
Supplemental Security Income, if he is eligible, will provide a modest monthly income, but more importantly, healthcare insurance through Medicaid after he turns 25. (Thanks to Obamacare we can keep him on our policy until then.) But even after we file and if he is eligible for benefits, any money that comes into his name in the future can knock him off the benefits, which means we have to look at our own estate planning. Our advisor suggested we set up a special needs trust, which leads to a whole new set of issues: Who should the trustee be? It has to be someone we trust, who will still be alive when we are gone. Certainly that suggests that anyone close to our age is not the right candidate. And what arrangements do we make for a successor trustee if the person we pick can’t do it or isn’t around to manage it? The trust, we are told, has to be set up in such a way that he has no control over it, or it will make him ineligible for SSI, which is the whole point. Who will have his best interests in mind and be willing to spend the time it will take? How can we anticipate now what Reilly might need in 30 or 40 years, after we are gone? Do we fund it now, at some cost to our own retirement, or plan to leave enough in our estate to take care of him at the risk of leaving less for his brother and sister? Do we have to worry about whether the other kids feel they have been unfairly treated? How do we fund it? Insurance? What kind? (We have learned more about “guaranteed” and “whole life” and “first to die” policies than we ever cared to know. And how morbid is discussing a “first to die” policy with your spouse?) How much does he need, and when will he need it?
We are working our way through these issues now. Our goal is for Reilly, and his brother and sister, to be independent, self-sustaining adults, and we’ll put all the resources we have into that goal. Resources that I fully understand we are lucky to have. These decisions are difficult, but how much more so for families who are not as “lucky” as ours?
Update: Since this column was written, the injured man has passed away. Our condolences go out to his family.
A horrible tragedy has occurred within Cameron’s school community. The father of a second grade student was critically injured, and his life hangs in the balance. This is a man I knew by sight but not by name. I often saw him in the afternoons when he would come to pick up his son. Prior to pick-up time, this man would regularly be seen running on the roads near the school, as he got his workout in while waiting for dismissal time. Since I would see him after these workouts, and I didn’t know him by name, I would affectionately refer to him as “Sweaty Runner Guy.” Who could we ask to help with Parents’ Association events when our usual suspects were spread too thin? “Why don’t we ask Sweaty Runner Guy?” I would suggest. The nickname was not meant in a mean-spirited way, and everyone knew who I was referring to, as he was such a regular presence at school.
Last Tuesday, this man who was the epitome of a healthy lifestyle was hit by a bus while running near the school.
I find this so tragic on many different levels. The stark reality is that life is unpredictable. I’m sure this young, uber-healthy father never in his wildest dreams imagined that being hit by a bus was in the cards for him. But the cold, hard truth is life is fragile. And as difficult as it is to face the death of a loved one, that difficulty is only magnified by the administrative nightmare that often follows the Grim Reaper’s visit. Then, factor in a surviving child with special needs, and your mind really starts to swim. No wonder so many of us put off planning for the eventuality of our own death. But isn’t taking care of these details the very least we can do for our surviving loved ones?
I’m writing this column as a lecture to myself (and my husband). For more than a decade, we’ve brought up the subject of death administration, but never gone much further than general discussions. It’s a hard subject to deal with! Who would take care of our children? We have no family members living near us. Do we subject our children to relocation to another state or country (my husband’s family lives in Europe) in addition to being subjected to the loss of their parents? And that’s just one of the issues we’re left scratching our heads over. As Liane Kupferberg Carter noted in her column, “Seeing Clearly,” most special needs parents simply feel as if they must live forever. But truthfully, the more you think you need to live forever, the more you need to plan for your death.
So where does one even begin? I remember a few months back hearing a segment on NPR about this very subject. A woman named Chanel Reynolds, who lost her husband and was left to deal with the nightmarish administration of his death, started a website to give the rest of us a place to start. The website is aptly named Get Your Shit Together!—a name that reflects the importance of getting down to the nitty gritty. As Reynolds notes on the site, “The reality of my financial situation hit me like a ton of bricks: Our income immediately went from ‘healthy’ to ‘zero,’ we did not have an emergency fund, our life insurance policy hadn’t been updated in five years, we had no disability insurance. Without short term help from friends and family and the life insurance that came later, I would have quickly lost everything, including my sanity. I was frighteningly vulnerable, it’s embarrassing, but it’s true. And it is true for many of you.” And—as far as I know—she doesn’t have a kid with special needs.
I’m sure I’m not the only parent out there that is so focused on taking care of the day-to-day drama that imagining the drama without being in the driver’s seat is unfathomable. Everyone needs to be prepared for the inevitable. Those of us with children with special needs have even more preparation to do, and very important reasons to do it. So on top of all you do, take some time and figure out who would do what you do if you were unable to do it anymore. Think of planning for your death as insurance—something you hope you will never need, but can help avert disaster if you do. Then keep working on that living forever thing.
In May of 2011—19 years after I was first diagnosed with autism at age 4—I was on my way to receive my undergraduate degree from Seton Hall University. It was a day of many tears and hugs from family members, classmates, and friends. The road to my undergraduate degree had ended and now new beginnings were about to start. For me the new beginning would be pursuing a Master's Degree from my alma mater (in a somewhat ironic twist for a kid with autism) in Strategic Communications.
Fast-forward to May 2013--two years, 11 classes and 36 credits later. Last Saturday was my hooding ceremony and I now have my Master’s degree. The program listed Kerry Magro and had a little asterisk next to my name signifying that I graduated with distinction, a high honor for me.
When I was preparing for my undergraduate graduation I wrote a poem that I shared with Autism Speaks called “This One’s For You”. In the poem I discussed how blessed I was to have overcome so many obstacles to get to where I was at that moment. It was also a poem in which I shared with the world my satisfaction that I was able to prove wrong so many of the naysayers. Those individuals who told me I couldn’t and wouldn’t achieve in this world because of my disability.
This time around I thought I would have the same type of feelings to write down but to my surprise they are completely different.
One of the incidents that could explain these feelings happened at the hooding ceremony right before we received our diplomas. We were all standing outside of our gymnasium divided into different sections based on our specific degree programs. During that time we all had champagne and were able to reminisce before being asked into our school’s gymnasium for the proceedings to begin. Almost an hour before this occurred I was with my family who were diligently trying to get this small graduation hat to stay on my ginormous head. About 15 bobby pins later, when we thought we connected the hat on well enough, I met with my friends for the event.
Then the hat started getting loose on our way into the gym. I was freaking out because no professors seemed to be there, and I was just looking around the place for an answer. Three of my classmates responded whose basic consensus was “Kerry—we got this” and helped lock that hat on so tight it wouldn’t have come off if I had decided to do cartwheels around the gym.
That moment signified a lot to me in my overall social development. When I was a kid, I didn’t have that many friends who would have helped me in a situation like that. As much as I strived for good grades, I strived to get that social interaction I desperately wanted as a kid and finally had as an adult.
It made my whole college experience start to round out for me. My undergraduate graduation made me reflect about being able to say I did something, and the graduate degree made me reflect on the friends I’ll have made for a lifetime. I truly did graduate with distinction. I have friends who would help me out, a high honor for me.
These types of successes are dreams that I’ll always cherish and fuel my fire that I hope I can use to motivate myself to go out there and help others on the spectrum make their dreams come true. Everyone deserves to have a similar feeling to the one that I have now.
“I’m just not sure what to do, or how to help her,” my friend Marie (a pseudonym) said. Her voice trembled slightly. Beneath her words I could hear what she was trying to say: I want so much to do the “right” thing for my sibling, but this situation is so messed up.
Marie was talking about her sister, a bright, talented woman who has been struggling with ongoing health issues. For years, Marie has stood by her sibling in these recurring challenges. As such, Marie wrestles with questions I know all too well: How involved should I be in the care of my adult sibling? What do I do if I see a potentially serious problem no one else in the family is willing to openly acknowledge? Where does my responsibility begin and end? And so, when her sister’s condition took a turn for the worse, Marie was—quite understandably—upset.
Marie and I spoke for over an hour, though it was a weekday morning. Even as a little voice in my head was nagging at me with discouraging comments like You should get back to work and You’re being lazy, staying on the phone so long, I knew better than to take it seriously. In fact, I reminded myself that what I was doing in those moments was the “real” work. When I come to the end of my life, I won’t regret time spent forging true connections.
And I listened, I knew without a doubt that being Willie’s sister had prepared me to empathize with my friend. Having known Marie for years, I knew that she didn’t talk about her sibling’s issues very often. In fact, I sensed that she couldn’t have talked about her sister’s struggles with just anyone. Marie has met Willie. She’s heard our stories; she’s read my posts and columns. She knows about the meltdowns and the fear and the ongoing challenges. She also knows about the bond between us, the shimmering moments that allow us to see beauty first. And knowing these things gave her the freedom to tell the truth about how much she loves her sister, and how hard it can be to keep that love alive.
Marie and I did talk about practical considerations and concrete interventions, but on the whole, she needed a friend more than she needed advice. Indeed, Marie described how her sister’s needs often dictated the family’s decisions, how she’d cast herself in the supportive-sister role for years. In turn, I was able to speak from my own experience, saying, “When you’re trying to figure out what to do, you need to consider both your sister and yourself, your own sanity. It’s easy to get swept up in the drama, but there’s some serious fallout if you stuff down your emotions, your anger and fear. You may not be in crisis, but your needs matter, too.”
She said, “At times I just long for a more ‘typical’ relationship with my sister, you know? A more even footing, maybe. But that’s not how it is with us. And sometimes, I just wish it could be easier.” I nodded. If I had a dollar for all the times I’ve wished for an “easier” relationship with Willie, I’d be a very rich woman. But after all that wishing, I’ve come face to face with a immutable truth: in our hard times, the only way out is through. And, as a corollary: The darkest times give us depth, and greater tenacity. The shadow-days make what really matters stand out in sharp relief.
As such, what I had to offer in that conversation was less my words than the substance of my life. Marie could talk to me about her family’s difficulties and her “above and beyond” sibling responsibilities, knowing that I’d understand a situation with no easy answers. “Thank you,” she said, “for writing what you write. You have no idea how much reading your stories has meant to me.”
Marie and I hung up, and how strange it was. Though nothing about our circumstances (or our siblings) had changed, an intangible something had altered. We weren’t alone in our unanswerable questions, and that made all the difference.
When I graduated from college, I found out quickly that to support myself in the “real world” I would have to work two jobs. After working two, sometimes even three, jobs for about three years I could tell it was getting the best of me. Working up to 85 hours per week to pay bills finally got the best of me and I had to quit one of the jobs. I was able to explain the situation to my night job and leave on good terms with the manager. I have found with my job now, I have to be that voice for autistic adults when work has become too much for them. Some of the individuals I work with have two, three, and sometimes four, jobs but they can’t really express when the work has become too much for them. So, I have to look for clues and indications regarding how they are feeling.
When I first started my current job as a Supported Employment Manager, I had one person on my caseload that had three different jobs in one week. He was working at a clothing store on Mondays all day, working at a warehouse store Tuesdays through Thursdays, and was working at a grocery store on Fridays. This person was very independent and loved working at all of these places, so who was I to say that he had to give up one of the jobs. When this person lost the job at the warehouse store due to downsizing, everyone else was worried about him not working all the time now because that was what his routine was. He was able to tell me that he wanted to work another job and actually knew the job he wanted to do. It was not hard to find him another job, but that is not always the case.
Another individual was working four different part-time jobs. Coming back from a vacation, I found out that he had been assigned an additional job working in a restaurant. I could tell right away that the individual was working too much because he started exhibiting behaviors that we had not seen since he started our program. In spite of pressure to keep him working all the jobs, I finally decided to pull this man from two of the jobs—a volunteer job and a paid position.
Needless to say, some people were not happy that I had pulled him from a paid position. But in light of the return to challenging behaviors, keeping five jobs didn’t seem to be the right answer. In the end it all worked out well; the individual became more relaxed and loves what he does now with three jobs. It is nice to know that a parent would trust me enough to find what is best for their child. Especially when the individual lives with the mother and she has to take care of him after work. While I don’t always know what’s right for the autistic adults I work with, I do know that sometimes they need someone to stand up for them, pay attention to what they are trying to tell us, and be a voice when work overwhelms them.
April wasn’t only Autism Awareness Month. It was National Stress Awareness Month too.
Last month I started having difficulty seeing. Initially I attributed it to my new eyeglasses. Everything seemed to be pixilating in the center of my left eye. It wasn’t just those annoying floaters. Any text I stared at seemed to fade out, as if a shimmering dark cloud was moving across the page. It felt like holes in my vision. I had a headache that waxed and waned but never quite disappeared. I, who pride myself on my proofreading skills, was suddenly missing typos. Writing became hard. Reading was exhausting. Driving was a white knuckle experience. I stopped doing the New York Times crossword puzzle because I couldn’t make out the numbers in the grid.
I Googled my symptoms. I know, I know. Bad idea. Of course I scared myself. I read about posterior vitreous detachment—strands in the vitreous gel inside the eye, common after cataract surgery, especially if you are nearsighted. Retinal detachment. Pituitary tumor. Macular holes. Ocular migraine. But with ocular migraine, I read, the symptoms resolve between headache bouts.
My ophthalmologist sent me to a retina specialist. She dilated my eyes. “I see a very small hemorrhage, but I don’t think that’s causing your symptoms,” she said. “You can get that just by bending over. I’m going to torture you a little bit. We’ll inject some contrast dye to get a look at the blood vessels behind the retina.”
For a nanosecond I pictured the eye clamp scene from “A Clockwork Orange.”
As soon as she left the room I whispered to my husband Marc, “The ‘torture’ part is just injecting the dye in my arm, right?”
“I’m sure it’s the dye,” he said reassuringly.
I signed consent forms, and a technician took more than a dozen temporarily blindingly bright flash photos. I returned to the doctor, my sight now a blurry pink haze. She clicked through the images on the computer screen. “That inverted smoke stack shape?” she said, pointing. “Classic presentation of central cirrus.” Cirrus? Like a cloud formation? I pictured wisps of water vapor drifting over the surface of my eye.
“The good news,” she said, “is that it generally resolves with time.”
“So what causes it?” I asked.
“We see this most in men in their 30s and 40s, who have ‘Type A’ personalities.”
Which I am assuredly not.
Why yes. We’re intimately acquainted.
And the last few months have been intense. My autistic son Mickey has landed in the emergency room twice: for kidney stones, and for a painful abscessed cyst requiring surgery. We’re struggling to figure out what he will do once he turns 21 this year and exits the school system. (That’s what they call it—exiting. Not graduating. But that is another column.) Last month was filled with psychological assessments for Mickey. Educational evaluations. Doctor appointments. EEGs. Seizure medication changes. A new consulting engagement out of state for Marc that requires him to live all week in a hotel.
I went home and looked up “central cirrus.” Google corrected me: central serous. It had nothing to do with wispy or funnel shaped clouds. I squinted at the screen to read: “Central serous retinopathy: An eye disease which causes visual impairment, often temporary, usually in one eye, characterized by leakage of fluid under the retina. Stress appears to play an important role. CSR can re-occur causing progressive vision loss.”
It’s not just the episodes of acute stress. It’s the chronic concerns that grind me down. Sometimes I feel like the Bill Murray character in the movie “Groundhog Day,” locked in a time loop and endlessly repeating my days. When Bill Murray’s character eventually learns the lesson he most needs to learn, the loop ends. He moves on to a next day. But does that analogy hold up? When you have a child with special needs, you’ve signed on for life. Do you ever truly move on?
I hope so. Because like the proverbial canary in the mineshaft, my eye is an early warning system. It’s telling me I need to learn something critical: how to pace my anxiety. If I don’t figure out how to modulate my reactions to the stress in my life, I’m going to be in serious—not only serous—trouble.
“I’m getting a doctor’s note for a live-in masseuse,” I tell Marc.
But beneath the joke is a darker truth: Stress kills you.
And special needs parents need to live forever.
Friday night, Cameron attended his high school prom. This wasn’t his first prom, as his school invites all high school students to attend each year, and Cameron had attended the year before last. But the last time Cameron attended, I drove him, and he asked me to pick him up early. This year, he was going with six other students, in a limo. Cameron has always been fascinated by limos, and this luxury ride was partially how I enticed him to attend the prom this year. You see, in order for Cameron to attend the prom, he would miss a night of work at the pizzeria. This was a hard decision for Cameron … until the limo became part of the deal.
I missed my deadline for submitting this column so that I could report on every last exciting detail of Cameron’s prom experience. I just knew this was going to be a break out moment for Cameron. I’m regularly caught by surprise by Cameron’s break out moments, but this one was so predictable I could practically taste it. This prom had the promise of being something special. Instead of going solo, Cameron would be with a group of “friends.” Cameron would be riding in a limo, instead of excitedly pointing it out as it passed by. He would be staying out past midnight. (I had to coach him on the fact that it would be okay to be out late. I reminded him that he’s 18 now, and staying up past 10:30 is something he can do, and should do every now and then.) He was going as part of a group, and maybe he would even ask a girl to dance. He rejected my offer to rent him a tux, but did don the same coat and tie he wore two years ago. I eagerly stayed awake until he arrived back home, anxious to see a certain glow on his face.
So maybe I got a little ahead of myself. Whenever I predict a break out moment for Cameron I should remind myself that break out moments happen when least expected. Cameron arrived home with more sleep in his eye than twinkle. Waiting until the next morning for details didn’t prove to be a more successful strategy of intel gathering than grilling him when he walked in the door. No amount of open ended questions provided any insight into the evening. In response to “What was the best part of the night?” I got silence. I’m not disappointed or even surprised by Cameron’s lack of enthusiasm towards his prom experience. I just wish … sigh … I just wish Cameron would exhibit some form of excitement about something. And when I say “excited” I mean “excited” and not “anxious.” I wish he would look forward to special events and not fret over them. I wish I had more insight into how he experiences these events. They seem to come and go without much reaction from Cameron. Does he experience them differently internally? Is his lack of noticeable expression part of his language-based learning issues? I wish I knew.
What I really wish is that what seems to make Cameron the happiest wasn’t to be left alone.
First published October 7, 2011.
Our family originally qualified for Supplementary Security Income for Cody when he was four years old. I was a single mother, not working at the time and my husband, Bill, and I were not yet married. So qualifying for this benefit with a four-year-old boy with autism was a pretty cut-and-dried process.
But then a few months later, I went back to work and Bill and I were married soon after. That’s when everything changed. Our family income had increased past the limits set forth by the Social Security Administration and Cody’s SSI benefits were terminated.
After Cody turned 18 things changed again. Since Cody was legally an adult, we were allowed to reapply for SSI benefits based solely on his personal income and any assets he owned. Thus, obtaining benefits for us was a relatively simple process.
We were fortunate in the sense that when I called the local Social Security Office, they were very straightforward about telling us exactly what we needed to bring with us in the way of documentation and that on the day we would come to apply for benefits, we would need to complete a form upon our arrival and what kinds of questions would be on the form.
After completing the forms from the Social Security Office, we needed proof of identity which we supplied in the way of Cody’s Social Security card and birth certificate. Then, we also had to supply proof of Cody’s autism. So, we provided a letter from Cody’s pediatric neurologist which stated that he had treated Cody since the age of 11 and it also gave a synopsis of his diagnosis. And lastly, in order for the Social Security Office to be able to make funds payable to me, as Cody’s mother and guardian, we had to show our certificate of legal guardianship which we had obtained through the family court system approximately a month before Cody’s eighteenth birthday.
Once we had all of our paperwork together we went to our local Social Security Office, filled out their required form and waited for our interview.
Finally, our names were called to meet with one of the agents. Upon submitting the completed form and the paperwork we had been told we needed to supply to verify that Cody met the criteria, the agent asked questions regarding when Cody had originally been diagnosed, whether he had ever received SSI before, and his personal income and assets. The process took about 30 minutes and then we waited for final approval. From start to finish the entire process took about a week’s time. We filed for Cody’s SSI in the same month as his eighteenth birthday and started receiving benefits the following month. But other parents and guardians I know have filed at a later date. Once their cases were approved by the Social Security Administration, they received retroactive funds going back to the month of the individual’s eighteenth birthday.
The funds we receive can now be used for a portion of household bills such as mortgage payments, utilities, telephone, groceries and other household items. We can also use the money for transportation, Cody’s clothing expenses, any medical bills not covered by Medicaid or other health insurance, furniture for his room or to pay for any educational/life skill materials he might need. But the funds we receive do not nearly cover all of Cody’s monthly expenses.
Every year in the month of June, we receive a reconciliation form that we must complete to account for how we used the total funds for the entire year. Given the fact that there are four people in our household, we can include 25% of our household bills, in addition to Cody’s clothing, medical, transportation and other personal items. Even with the past cost-of-living increases that have been awarded to recipients who receive monies for SSI and other Social Security programs, the total funds we receive per year have yet to exceed two-thirds of the sum total of Cody’s share of household bills and his personal expenses. Nevertheless, it has been a great blessing and I am most grateful.
At present, I’m not a parent. I don’t have a son or daughter of my own, but if ever I do, I have a very specific item at the top of my parenting to-do list. Be forewarned—it’s not practical. It’s not about cloth diapers or nursery decorating or party planning or anything like that. It’s simply this: Write that child a song. The reason I feel so strongly about this is that my mother sang “my song” for me. And I remember how it used to make me feel: protected, cherished, beloved. When I was older, I would trace the lines as I read them in my baby book. My mother’s distinctive half-print, half-cursive script read: “Caroline, Caroline/ Oh that little girl of mine/ From the start, you stole my heart/ and oh, I love you, Caroline … ”
When my younger brother Willie was born, my mother wrote a song for him too. It was simple and easy to remember, like mine. “Little Willie, my sweet Will/ Close your eyes, be sleeping still/ Mother, father, sister too/ Send their love, sweet dreams to you.” As I recall, I wasn’t jealous of the fact that my brother also had a song. On the contrary, Willie's song was immensely reassuring.
When my brother was diagnosed with autism, I was too young to fully understand what the word meant. All I knew was that something was different about Willie. I knew that he wasn't like other children I'd meet, and that our parents needed to spend extra time working with him on various therapies. I knew that he loved order and lining things up, and that he hated loud noises. As I grew older, I came to understand more about autism, and my brother's ways of thinking and being. Yet listening to my brother's song served to remind me that we shared a common core. With or without autism, we were—are—welcomed with love.
These songs might seem like small things, but they were significant. As we grew beyond childhood, our songs weren't woven into the fabric of our daily life. On the contrary, our mother was selective. She would save our songs for times when Willie and I were most in need of reassurance. When I was teased at school, when I grieved my brother’s difficulties, when Willie was too upset to fall asleep at night … these simple songs were the music I heard. As time passed, she’d sing them less and less, but whenever she did, I knew what they meant. Between the lines, they told us: You have always been loved. And nothing can change that.
As a young adult, I used to think that maybe I was weak for needing that reassurance, that the songs were too simple, childish maybe. But as an adult, I have learned the difference between childish and childlike. And I have come to see that the simple solutions are often the best ones. (Getting a dog, for example, is such an everyday decision, and yet having Chevy in the house has already helped Willie.) And when I try to “figure out” autism with my mind alone, I get overwhelmed fast. The questions I really ask, the answers I really need, are those that come from the heart.
And I have a feeling it's the same way for Willie. These are the questions he asks with his actions, his tears after a meltdown: Am I loved, even though I've done these unlovable things I wish I could take back? When I hear the songs our mother wrote, I also hear the answer: You are. And nothing can change that.
Of course, there’s more than one way to show such love. Our mother wrote us songs, but our father suggested our names. My brother is the third William in our family; he’s named for our father and grandfather, and his name means, “Protector.” It speaks to me of solidarity, of heritage, connectedness, and honor. And me? I could have been a Caitlin or a Mary Louise, but my father insisted on Caroline. The name comes from the French word for Carol: A Song of Joy.
When I was very young, I remember using the telephone in my parents’ house to call a home shopping network in an attempt to get a pretty-looking umbrella. I say “attempted” because I did not actually finish the call. I was able to dial, connect with a customer service representative, and ask for the umbrella, but I did not have my mother’s credit card number, so I had to hand the phone over to her. When my mom realized what I was doing, she politely ended the call and we had a discussion regarding my telephone privileges. It was quickly determined that I had no business using the telephone at that time, especially to purchase items. I was four years old at the time.
Since then, I have learned proper telephone skills such as checking the caller ID to see who is calling and, if I know the caller, picking up before the answering machine engages. I have also learned to leave voice messages, call for my own doctor’s appointments and prescriptions, and how to maintain a polite conversation with someone over the phone. All of these skills were mastered on my parents’ phones, but now we have decided that I have reached a point where I need my own phone. This is partly because my parents feel I should have a phone in case of an emergency, and partly for safety reasons. They want me to be able to reach them at anytime from anywhere and vice versa. They also know that I am able to handle the responsibility of caring for my own phone. So, I recently purchased my first cell phone, and I am looking forward to putting it to good use.
We made the rounds to a few phone stores to see what might work best for me. After consulting with my parents regarding my budget and looking over the prices of the cell phones and the prepaid usage packages that are on the market, I decided that a simple track phone was all I needed. I knew that all I desired for my phone was the ability to make phone calls and a large enough keypad to accommodate my fine motor issues. I had noticed previously when I borrowed other people’s cell phones with small keypads that I kept dialing wrong numbers, so I wanted it to have big buttons. I wanted to know that I would be able to be accurate when dialing. I do not need my phone to have Internet access, the ability to play music or watch videos, or any other fancy bells and whistles. I already have a laptop computer and iPad that can do those things just fine. I will, however, have the capability to text on my new phone. This will be a new skill for me, and I am looking forward to learning how to do it.
I also purchased a cell phone holder that will secure the phone to my pants at the hip. The phone fits snugly into the holder, too, a detail I wanted to make sure of before I purchased it. I also love how the phone is light and easy to use.
This is exactly the kind of phone that will work best for my needs. I purchased the phone, the holder, and a coverage plan which I can easily afford. I am now in the process of learning how to enter phone numbers, text, and maintain my phone. I plan on keeping and using it for a long time, and I cannot wait to give my new phone number to my family members and friends so they know where they can now reach me. This is going to be big!
Reilly comes home from his first year away at postsecondary school this week. More precisely, we pick him up from the New York Institute of Technology's Vocational Independence Program.
By all accounts, it has been a great year, full of growth and achievement. As previously reported, I was looking for a residential summer program for him when he did an end run around me and got himself a summer job at our neighborhood pool. I applaud him for this on several levels. He knew what he wanted, and he found a way to make it happen. But it means he's living at home for three months. For the last two summers, he was away at NYIT's Long Island campus for seven weeks, and that gave us both a much needed break from each other.
When Reilly went away to school in the fall, it didn't take me long to embrace my empty nest, with more free time and less stress than I've experienced in, well, a long, long time. Winter break was long and Reilly regressed to an oppositional teen with limited self-care skills much of the time. I have been dreading the summer.
But I'm committed to making it productive. It's not going to be easy, and it means breaking some entrenched family patterns. But it needs to be done. His dad and I have been thinking and talking about how we're going to make this summer work for all of us. We've talked to Reilly, briefly, about the need to have new rules and responsibilities in place if he's going to live at home successfully. The three of us will need to negotiate the terms, maybe on the long drive home.
I'm hoping to take a very limited role in his work life, for example. The pool is only a little more than a mile from our house, and I'm thinking Reilly can walk or bike to work. I will expect him to keep track of his schedule and get himself to bed at a reasonable hour and get up in time to get ready and get himself to the job.
I want him to take responsibility for many of his own meals and to do his own laundry. I want him to own his personal hygiene, with no nagging on my part. I'm looking for a cooking class he can take, and hoping he will get his driving learner's permit. A household chore or two each week would be good, too.
It will take work on my part, too, to uphold my expectations. That's harder than it sounds. He was the baby in our busy household for the last 19 years. It's been easier to do things for him than to get him to do them for himself. As the youngest of four children myself, I tend to identify with and abet his baby-of-the-family behaviors, attributing too many things to his “disability.” Intellectually, I know that doesn't serve him well and that I need to encourage his ability. It's a pattern I have to break.
That's my summer manifesto. It's an ambitious agenda. And maybe I'm setting us all up for failure. But as I think about my expectations and worries, I realize that this all can apply to any college student coming home for the summer. And that gives me some comfort. I remember that the situation was not much different when Reilly's two older siblings came home from their first year away at college. The difference, I think, was that we negotiated those transitions less formally. With Reilly, more things need to be articulated, spelled out. Expectations are not as easily understood, or picked up on with minimal verbal cues.
We can do this. Stay tuned for progress reports on our summer break.
First published September 12, 2011.Imagine a video game that takes you into an enchanted forest filled with charms, potions and magic weapons enabling you to save your kingdom from the evil villain. But be careful! If you choose the wrong tool to aid your journey, a greedy leprechaun will steal your pot of gold, and you might not be able to rebuild the treasure needed to finish your quest. It may sound like fun in the virtual world but when you apply this scenario to finding treatment for a child with special needs, those leprechauns are sometimes unavoidable. There is nothing I wouldn’t do to help my son conquer his challenges, so I jumped right into the midst of the game, becoming a Hunter/Warrior version of myself, looking for the silver bullet that would magically make him “normal.”Despite being a rather skeptical consumer, something always pulls at my maternal emotions when I'm presented with an opportunity to help my son. We tried a variety of silver bullets: ADD medication (which caused shortness of breath), music therapy (to decrease noise sensitivity by stimulating the hairs in the inner ear), allergen-free diet (that was unbelievably restrictive), vision therapy (forcing him to stare at 3-D pictures until his eyes crossed), one-to-one intensive reading tutoring (with no guarantees, but gains could be as much as two academic years in eight short weeks) ... and the list goes on. If there had been a home shopping network for this stuff, I would've watched 24/7, and been bankrupt. By no means am I saying that all silver bullets are a waste of money. There was some good with all of them that we tried, and a few therapies here and there made a huge difference. But it's really difficult as a parent to separate the emotion from the marketing. If it's “all that,” shouldn't it be affordable to everyone, and/or, dare I say it, covered by insurance? My Hunter/Warrior skills can be called into action at unexpected times. I actually overheard a woman sitting behind me on a transatlantic flight say that she was an Education Diagnostician and lived in the next city from us. My Hunter/Warrior instincts took over and I popped up over the back of my seat, like a Jack-in-the-Box, and practically landed in her lap. I needed to get this woman’s contact details so that I could get referrals to OT’s and SLP’s in my area! (Yes, I’ll return my seat to its upright position and stow my tray table … but this woman knows people I need to get in touch with!) Another use for those Hunter/Warrior skills is trying to find someone or something to blame. The finger pointing that absolves my gene pool from possibly contributing to the issues my son faces. Surely it's all his dad's fault! Then I think back to beach vacations with my son when he was a toddler and how he would absolutely freak out when his feet touched sand. Truth be told, I'm rather obsessive about avoiding sand myself. Could the sensory integration issues by my fault? And what about ADD? Just today, I was heating up a can of chicken noodle soup for my daughter's lunch, and went upstairs for one thing (which I can't remember now…and couldn't then!) and ended up partially doing five other things. Of course there was no soup in the pot when I went back to the kitchen. Only something resembling wallpaper paste and smelling of burned chicken. Is distractibility hereditary? Did I make my son this way? Did I eat the wrong foods, breathe the wrong air, do something I shouldn't have or not do something I should have done when I was pregnant? At this point in time, of course there're really no answers to any of the above. That doesn’t necessarily preclude me from wagging the finger of blame. I'll admit, even after 16 years in the game, I still haven't quite hung up my hunting gear. But I feel my experience has given me better tools to assess the field. Yes, I still get a little adrenaline rush when I come across something that looks promising. I just spend a lot more time assessing those opportunities, and am less inclined to sell body parts to pay for them.
Oh relationships. Will anyone ever figure those things out? Well, about eight years ago when I was in high school I thought I had the key to it all. It was around that time I was in my first relationship. I know I make eight years sound like a century ago, but back then I’d give my girlfriend a call. For me that meant I would have to put myself out there. I remember talking to her for hours a night and I also remember the periods of time during the conversation which would be full of complete silence.
It’s interesting how a few years can change everything …
Today, I think for those of us in the autism community, relationships have improved due to technology and what I call “the texting evolution." No longer do you have to spend hours on hours talking on the phone when if you want to “talk” to someone, you can do it via text message. For someone who doesn’t naturally like to talk, it’s so much more comfortable. It also takes away the paranoia that I might have just said something I wasn’t supposed to. With texting, I can think more about what I’m saying before I’m going to send it.
As texting has come along I have seen myself advance in terms of relationships I’ve had with girls. For me, it’s been beneficial because of how busy I’ve been, but there’s also a sense of comfort that has come with it too. This point hit me a few weeks ago when I was going out to a local hangout with one of my close friends. We met some people we instantly connected with. By the end of that night, I asked my friend, “So how long do you think I should wait before I call her?” His quick response was “Don’t call, Kerry. Text, Kerry. Text.” This is the mantra for new-age relationships.
Since that night, I’ve spent some time discussing texting with individuals both off and on the autism spectrum about their thoughts on this topic. Many of the responses I received go back to just how much technology has developed, and in-person, face-to-face communication has slowly dwindled and been replaced by social networking sites.
I don’t see a clear winner as to which side is best, but I believe you have to try to navigate both face-to-face and online interactions equally. I’ve seen huge benefits to initially starting out with face-to-face interaction and as a relationship develops, to switch back and forth between the two types of communication.
Even though both methods could be hard for those with autism, I’ve seen it as the best way to commit to a successful relationship. Again, I’m not a relationship guru, but I believe these tips can help anyone be successful. If you are unsure how you want to approach a relationship just try to center yourself on the communication method that makes you most comfortable and then go from there. And maybe most importantly don’t stress! There are plenty of people out there!
When I was younger, being 25 years old seemed tremendously grown-up. My closest friends felt the same way; we didn’t talk about our lives beyond that year, because it seemed like a future so distant that it would never become the present. But now, the unimaginable is made real; I’m nearly 28, and my brother Willie is turning 26 this week. As always, he’s been counting down the days. When I think of him eagerly awaiting his birthday, I realize that, with every year of his life, Willie himself has been a gift. Here’s my “countdown,” 26 gifts and lessons he’s given me:
1. Willie’s birth gave me the privilege of being an older sister, and the realization that, contrary to what I believed at the time, I am not the center of the universe.
2. I learned early on that life can change in an instant; after all, being in a diagnostic center was my first memory.
3. My first specific memory of Willie involves me snatching the remote, and him biting my hand in return. Lesson: Actions have consequences, and little brothers bite!
4. Once upon a Christmas, Willie and I played with a new Noah’s Ark. I remember Willie marching the animal pairs up and down, and realizing that the shared experience was the best part, that the best things in life aren’t things at all.
5. Willie gave me inspiration to start writing. My first book, entitled, “My Brother,” was a big hit with my first-grade teacher.
6. Shaken by Willie’s diagnosis, our family began attending church. We connected with the community and formed lifelong friendships. Grief led us into new places of belonging.
7. When Willie and I played together, his goofy sense of humor freed up my studious self. I loved having a sibling with whom to run away laughing.
8. When I hosted my first sleepover, Willie participated with eagerness. I saw that including him in my life didn’t have to be awkward, that I could give people the benefit of the doubt.
9. As Willie’s sibling, I learned to be selective about friendships; I learned a great deal about people based on how they interacted with my brother.
10. Thanks to Willie, I was introduced to a fellow “autism sister,” and she became a close friend.
11. When I entered middle school, I longed to be “popular.” However, being Willie’s sister meant that I wouldn’t compromise my integrity to do so.
12. Skiing with Willie gave me the thrill of fear, and the knowledge that risk is part of what it means to be alive.
13. Seeing the world through Willie’s eyes showed me that everyone has a different perspective; one person’s parsley and meatballs is another person’s, “It’s still growing!”
14. Being Willie’s sister gives me compassion for wallflowers; I approach those on the sidelines.
15. When Willie entered middle school, I was proud to see him join the track team. Years later, when he was expelled from high school, he’d say, “I want to go back to [my] middle school,” stare at his track team photo, and weep. All at once, I saw how much being a part of a team mattered to him. I could never again assume that his tendency to withdraw means that he doesn’t want to join in.
16 through 22. When Willie went through years of catastrophic behavior, my family went through hell … and we were given, again and again, the gift of knowing that love endures all things.
23. Hearing Willie play the piano has been a stunning experience of redemption; in the music he plays, I hear all the control, precision, and beauty that is sometimes absent from his behavior.
24. When I bought Willie a dog book last year, I didn’t mind that the gift might be destroyed. Willie has taught me the distinction between what is and isn’t in my control.
25. Thanks to my work at Autism After 16 and elsewhere, our family’s story is featured in a new documentary, “My Brother,” by filmmaker and American University professor Edwin Mah.
26. With every passing year, I am prouder of my brother for who he is and is becoming.
Do you know an Aspie (yes, you can include yourself!) who could use a good guide for getting along well at home, with friends, on dates and in the workplace for a variety of situations?
Peter Post's “Essential Manners for Men: What to Do, When to Do It, and Why” is a great place to begin. Post knows what he's talking about, having already written multiple books on the subject, created and presented business etiquette programs and produced a weekly column on business manners. In fact, he's inherited the mantle of the great etiquette expert Emily Post—his great-grandmother. Plus, his advice is backed up by business experience (as a former advertising agency owner) and survey data. Not only does this book provide good advice for men on how to stay on women's (not to mention other men's) good sides, it also shows women what they can and should expect from men.
Post writes clearly and specifically. For example, he lists five ways to improve listening skills: “Look them in the eye,” “Nod or say 'uh huh',” “Ask a question or repeat a point,” “Avoid nervous habits,” and “Wait your turn.” Each one is followed with a short, detailed explanation.
Not only that, he also writes humbly—he makes clear he's fouled up too and needs to improve, just like any of his readers. For example, under “Avoid nervous habits” he admits that he tends to play with things while trying to listen to someone—including bending paper clips, moving tableware around and doodling. And he goes on to point out that these movements distract the other person and can give her the impression that he's also distracted.
This can inspire the reader to think, “Hey, if this courtesy guru can not only fall short but also admit it to the whole world, why shouldn't I at least be honest with myself about where I can do better?”
It’s helpful that he explains why certain behaviors are better. People in general, but perhaps especially Aspies, find it much easier to do something when we can see the reasons behind it.
That's especially important for things like etiquette. Post uses a two-pronged approach, offering not only specific rules but also three general principles: consideration, respect and honesty. In other words, it's not just a matter of which fork to use when, or what kind of tie to wear. In fact, as he explains, sometimes a principle calls for bending or even breaking a specific rule.
For example, Mr. Post says that at the dinner table, you should pass a serving dish to your right—because the person to your right is likely right-handed and thus if she takes the dish from you with her left hand she can more easily serve herself with her right hand. Right there (no pun intended) we have an implicit possible exception: a left-handed dining companion.
And he points out another exception: If you're at a table of, say, eight people and someone just two seats to your left asks for the bread, pass it to the left instead of making it go the long way around. After all, would it be considerate or even respectful of your hungry tablemate, or of the five people on your right between her and you, to send the bread all the way around the table just because it's to the right?
In other words, this book encourages us not to miss the forest for the trees: “If you are [too] focused on other people's faux pas, then you're missing the real point of good table manners and formal dinners, which is to enjoy the company you are with.” A good reminder for us all, in fact.
Finally, “Essential Manners for Men” brings home the overriding reality of business: No matter how good your technical skills, you will not succeed without good people skills! Post points out that each time he hired someone, he explained that the new employee had to follow three inviolable rules. Two of them related to productivity and the third was the “people rule.” To stay on Mr. Post's payroll, you had to be able to get along with the other people there. (Pretty much every employer has that rule but precious few spell it out.) “Essential Manners for Men” is a true success guide for the 21st century, and not just at the dinner table.
It was Tuesday. Finally, we were back on our lunch-with-Mommy schedule and were ordering our usual McDonald’s lunch, to be accented by Madison’s favorite snacks brought from home—peanut butter and graham crackers, Cheetos, and Fig Newtons.
“Hey Pat,” I said to our longtime caregiver as she waited in line. “Let’s try something new for Madison. How about the strawberry milkshake?”
“Sounds good,” she said.
“But get an extra carton of milk, too, just in case.”
And she brought the food to the table and unloaded it.
“Let’s treat the milkshake as a dessert,” I said. So we pushed it away from Madison’s nuggets and fries.
“Madison, what color?” I asked.
“Pink!” she said, lightly poking the milkshake’s clear plastic cup.
“First nuggets, then milkshake for dessert,” I told her.
After she finished her nuggets and snacks, we carefully opened the milkshake’s lid and removed some of the overflowing whipped cream. We’d given Madison a spoon, thinking the milkshake would be thick.
She dug in.
We knew the first bite would tell us if she liked it or not. She’s quite particular about her food and quick to judge, often spitting it right back out the minute it touches her tongue. She plopped a big spoonful of milkshake in her mouth and paused for a moment.
We watched her eyes.
She looked up with a surprised stare, swallowed, and then smiled, her sneaky smile—chin down, grinning to herself as if she’d discovered a hidden treasure. She dug the spoon in once more and plunged it back into her mouth.
“She likes it! Good job, Madison,” we cheered. “High fives!”
And she “fived” us and dug in again.
Then we realized that while waiting to be dessert, the thick shake had melted. The shallow spoon didn’t hold much and Madison’s exuberance to eat quickly didn’t help. Soon the liquid was dripping from the spoon all over her shirt and her lap and the table.
“Too bad she never learned to use a straw,” I said to Pat. We’d tried to teach her at home since the day she graduated from the sippy cup. It’d even been an IEP goal for years. But, Madison just couldn’t master keeping her lips tight around the straw.
“Let’s see if she’ll drink it from the cup,” I suggested. I took the spoon away and handed her back the cup. “Take a drink, Madison.”
“Nope,” she said instantly, pushing the cup away and then reaching for the spoon.
“She knows she’s supposed to eat ice cream with a spoon,” I said to Pat. “I don’t think we’re going to change her mind.”
Then I had a thought. Maybe she would drink it if it were in her milk carton. She’d just finished drinking every drop from one carton.
Madison studied me as I poured some of her milkshake into the carton. I handed it to her to drink.
“Nope,” she said flatly, and pushed it away.
This time I studied my daughter. How funny (and yet typical) that she would not make that simple adjustment.
Perhaps since she’d been told it was a dessert, she knew it should be eaten with a spoon—not slurped out of some container not worthy of its role.
How mannerly. How proper.
It reminded me of an episode of “Downton Abbey.” Carson, the butler, was giving the new footman a lesson in the proper use of spoons. A teaspoon, egg spoon, melon spoon, grapefruit spoon, jam spoon and bouillon spoon were laid out, to be identified. The poor footman missed the bouillon spoon and Carson promptly corrected him, noting it was to be used only with soup served in bouillon bowls. Carson was quite sure about that.
In fact, Carson is quite sure about most things, when it comes to being proper at Downton Abbey. His rigidness almost anchors the show, steeped in traditions and expectations that provide a strong sense of place. A sense of comfort.
We gave Madison the spoon—the ice cream spoon—and put napkins all around. She smiled as she took another soupy bite.
Rigid and right. And comfortable.
Last week I attended the monthly Parents Association meeting at Cameron’s school. As Cameron’s school serves grades Pre-K through 12, there is a wide range of stages of parenting within the community. Among the participants of last week’s meeting were a few eighth-grade parents, and there was much discussion about the transition to high school. I was attempting to assuage their fears, claiming that aside from climbing a flight of stairs, there wasn’t much difference between the middle school and the high school. In response to my claim, one of the moms said to me, “But there’s all kinds of PDA going on in the hallways up there!” (Just in case you fear that you’ve missed out on some new therapy, PDA stands for Public Display of Affection.)
At last month’s Family Fiesta Night, this concerned mom had been in charge of monitoring the courtyard where the high schoolers tend to congregate at these school-wide events. She was shocked at the amount of appropriate male/female contact she was required to enforce that evening. Another mom at the meeting was struggling with managing her eighth-grade daughter’s relationship with a ninth-grade boy.
So of course—me being the compassionate, sympathetic person that I am—my response to these fretful parents was, “So after all these years of spending energy and money on developing age-appropriate social skills, now that your children are actually exhibiting typical teenage behavior, you want them to stop?”
Now, I’m no proponent of free-range hormones in the school hallways, but this is the kind of problem I would LOVE to have. Cameron has never really bonded with any of his peer group, male or female. My attempts in setting up play dates when he was younger never really seemed to hit the mark. Cameron can go through the motions and behave appropriately, but hanging out with the guys has never really been his thing. Could I have done more in terms of his social development? Probably. But it’s such a double-edged sword when you try to forge relationships among kids with similar social challenges. Let’s just say Cameron had a clone, for instance. The two of them would never hit it off because they would drive each other crazy. And while I’m sure Cameron loves the idea of having a girlfriend, the implementation of that idea is still several stations away, I’m afraid.
I would imagine that the idea of romantic relationships strikes a chord of fear among most parents of adolescents, regardless of the adolescents’ learning profiles. There are so many “typical” worries parents have at this age that I have considered myself lucky not to have to endure. I don’t worry about Cameron coming home drunk or stoned. I’m not worried about Cameron hanging out with the wrong crowd. And I’m not concerned that Cameron is being distracted by a romantic relationship. But if any of these issues did become concerns, I might just be secretly happy about it. Anything “typical” is a bonus, as far as I’m concerned. I’ll take “typical” parental concerns any day.
One of the skills Cody has been learning is cooking. Not only does he not mind it, he actually enjoys learning and performing culinary tasks. And he’s becoming quiet adept at it.
Normally when I have Cody help me in the kitchen, I assign him jobs such as stirring, using the electric mixer, adding premeasured ingredients and putting wrappers in the garbage. But this week I decided to step up his role as “sous chef.”
Originally Cody started off making simple foods. He has mastered sandwiches and soups. With prompts he can put together the ingredients for a cake mix, though adding the eggs is still a bit tricky for him. So Monday we brought out the cookbooks to find something that would challenge him further. Today he would be taking a much larger role in preparing dinner for the whole family.
I have always enjoyed cooking and I love to explore recipes from other cultures. As a result, Cody has grown up with a wide range of tastes and also knows that real meals take time and preparation because they are made from real foods such as fresh vegetables, meats, herbs and spices unlike the processed food that comes from a box. And I’ve taught him how unhealthy those processed foods can be. In going through our cookbooks, we found a recipe for the Caribbean version of peanut chicken and decided to try it.
While even some of Cody’s neurotypical peers might have looked at the list of ingredients and wrinkled up their noses, Cody is quite accustomed to seeing these items in our pantry. I wanted the process to be plain and clear, so I started off by writing all the ingredients in big bold letters on the dry erase board which hangs on our kitchen door.
We began by hand washing and talked about why to do so is important. Then it was time to gather all the ingredients we would need. I asked Cody to read the first item on the list and then had him pull it from the pantry or refrigerator and put it on our workspace on the counter. We did this with each item on the list until we had everything we needed. He even got to cut some fresh thyme from the plant on our patio. Now it was time to really get down to business.
Next I showed Cody how to properly hold the large knife I use for chopping and how to cut the tough ends off of the cloves of garlic. This required a lot of hand-over-hand help and close supervision from me. Next he learned how to crush and peel the cloves and add them to the mixing bowl. It took several prompts to get him to whack the side of the knife hard enough to crush the clove but he got the hang of it.
Adding the thyme was next. I showed him how to strip the small leaves from the stem into the bowl. He was rather intrigued by that process so that really didn’t take long. Adding the lemon juice, salt and pepper required little instruction from me. Next we added the chicken pieces and stirred it all up, covered the bowl, and left the mixture to marinate in the fridge for a few hours.
While that was going on, Cody and I went shopping for fresh plantains to fry and serve with the meal. He always enjoys going grocery shopping, but by the time we got home I could tell he was ready for a break. So I finished the rest up by myself.
All in all I was very proud of how well Cody did at learning and completing these new tasks and successfully making the marinade with relatively little help from me. Who knows? Perhaps one day these skills will lead to an occupation in the culinary profession for him … which would be just awesome.
I wake from a nightmare in which Willie was completely out of control, filled with rage, destroying everything in his path. It was one of those dreams that seem all too real; the brother I know and love seemed utterly lost. Time had dimmed the fearful memories of Willie’s worst behaviors; the nightmare made them vivid once more. Rubbing my eyes, I get out of bed and try to shake it off. To do so, I remember that which is real: Willie is enjoying a longed-for dream come true. This past week, our parents adopted Chevy, a Labrador Retriever mix.
It’s been five years since our beloved mutt, Curley, passed away. In the intervening time, Willie has been eager for a new dog. In fact, he began inquiring about a new pet before Curley passed away. Willie would say, “When Curley dies, then can we get a Labrador Retriever?” He didn’t understand why this wasn’t an appropriate question. Even so, I couldn’t help but smile when he asked it. And now, at last, our parents have answered that long-ago query.
When we spoke on the phone this past week, I asked my brother, “Do you like having Chevy around?” I wondered if the experience of getting a new dog was living up to his expectations. Willie doesn’t usually elaborate when asked yes or no questions, but this time, his reply went above and beyond.
“I love having Chevy around!” he exclaimed. I could practically see the grin on his face. In remembering the happiness in his voice, my nightmare dissipates. Instead of dwelling on the past, I consider how far Willie has come. He’s taking on new responsibilities and enjoying the process. At present, Willie feeds Chevy each night, and does the dog’s obedience training on a daily basis. As I wrote in last year’s "Pets and Progress," “Something about the concept of [Willie] taking care of [a pet] makes me glad. I am encouraged by the thought that he's able to contribute as a caregiver. It's both an indicator of his progress and, potentially, a source of growth in and of itself.”
“Willie really has been getting better at giving commands,” Mom tells me. “Like last night, when Chevy jumped up next to us on the sofa, Willie said, ‘Chevy, down!’ right away, with authority.”
“And does Chevy obey?” I ask.
“Well ... sometimes,” she says, and we laugh.
And the relationship is a two-way street; Chevy is, apparently, doing a good job when it comes to taking care of Willie. For example, the dog had an unconventional, yet highly effective, response to a recent meltdown. One recent afternoon, Willie became agitated, banging his head and threatening to hit our mother. He had to roll up in the rug in order to have some calming pressure, and prevent him from hitting his head too hard against the floor. Chevy, having never experienced such a meltdown, interpreted these strange events in his own way. In fact, he thought Willie’s rolling up in the rug was a game.
As such, Chevy didn’t run or hide away, as Curley used to; instead, he trotted right over to Willie, eager to play. Nuzzling his head into the opening at the end of the rolled-up rug, he licked Willie in the face. The puppy’s playfulness diffused the tension, made Willie laugh and, ultimately, relax. Though I’ve never seen Chevy, I love him already; any dog who can help diffuse a meltdown is a winner in my book.
Just before we hung up the phone, my mom asked if I knew the etymology of the word, “chevy.” Since I didn’t, we looked it up online. As it turns out, “chevy” is actually a British-English term. It means, among other things, “to chase, run after, pursue.” Since Chevy the dog was abandoned by his former owners, we’ll never know how or why they chose his name. But I can’t help but see it—and him—as the right fit.
Willie doesn’t need a passive dog, one that will sit back or run away in the face of a meltdown. On the contrary, my brother needs a Chevy: a dog who chases the nightmares away.
As part of Autism Awareness Month, I recently had the pleasure of participating in two events which helped to recognize the presence of autistic people and bring awareness of the condition in and to my community. The first event was a speech I presented to the SEPTSA group that I have mentioned in several previous columns, and the other event was “Bubbles for Autism Awareness” at a local park where I met others with autism and their families.
I was surprised that the SEPTSA meeting was attended by more people than there had been at previous meetings. This distracted me for a few moments when I first walked into the meeting room. I knew that a few of my family members, former teachers, and friends would be there to hear me and two other presenters speak about our lives with autism, but there were many more people who came as well. I felt that the room was a bit packed, but when my parents found us seats off to the side so we would not be in the midst of all the people, I began to relax. The other two speakers went before me. The first speaker demonstrated how his autism affected the way he thought and acted by carrying on a conversation with his mother. The next speaker illustrated what she felt were key points in her life with what I thought was a very well done PowerPoint presentation.
Their stories were informative, interesting, and inspirational. I immediately identified with some of the challenges we all deal with in our lives such as certain sensory problems, struggling to adjust to major changes in our environments, and desiring a strong, well-defined structure in just about everything we do. Even though we were similar in many ways, we were also very different from each other. I truly believe this exemplifies the saying, “If you’ve met one autistic person, you’ve met one autistic person.” I thought each of our speeches covered many different dimensions of autism and gave the audience a broader sense of just how wide-reaching autism is.
I presented my speech last. I felt comfortable during my time at the podium, probably due to the fact that I practiced my speech until I had perfected my style of delivery. I related to the group the things that I feel have been my biggest challenges, most helpful therapies, and greatest accomplishments. I do not think my autism has held me back even with the challenges I face daily, and I feel that was reflected in my speech. The audience reacted warmly to everything I had to say, and even laughed heartily at the few jokes I had put in to add a little more levity to the proceedings. In fact, each speaker was treated just as warmly, and many in the group complimented each of us at the end of the meeting. I was pleased to hear which parts of my speech each person most related to, and presenting my speech has assuredly been one of the highlights of my year so far. I have since been invited to give it again at another autism awareness event for a different organization, and I will be glad to do so if everything works out.
Attending the “Bubbles for Autism Awareness” event was something I have never done before. There was no fundraising involved in this event; it was just a fun way to bring autism awareness to the community. My mother saw the announcement and asked if wanted to participate, and I was glad to go. Blowing bubbles was part of many happy moments in my childhood, and even though I had not done it in many years, I was sure that it would be a fun way to bring autism awareness to people at the park where the event was being held. Despite the differing levels of communication abilities among the autistic members of our group, we were all still able to have a great time together. The park became a cascade of bubbles in no time with everyone’s collective participation. It was great event, and I enjoyed meeting and getting to know new people. I also had a really great time blowing bubbles again.
Both of these events were great ways to support autism awareness in my community. I was glad to participate, and I relish all opportunities to meet and speak with people about a condition that affects me so personally. We need to continue to shatter autism myths and stereotypes. These types of events are a great way to do just that!
Over the course of this past school year, I have shared carefully-worded anecdotes about the trials and tribulations of the youngsters in my life who are struggling with their impending graduation. That date is less than one month away at this point, and those of us on educational teams teaching these young adults are focused almost exclusively on getting them out the door in one piece, so to speak. The challenges that come with being a high-functioning autistic adult only become more prevalent with age—or if they do not increase in number, then surely the same cannot be said for intensity. The stakes are as high as they’re likely to get.
Students in my little corner of the world have spent the better part of the first two decades of their lives in educational settings, and now, as the song says, the end is near. As such, perhaps some advice from one older but by no means wiser is in order! Based on the struggles I have borne witness to in the past nine months, I would venture to say that the art of listening is one that perhaps has not been adequately developed by many of my students. My fellow teachers and I have spent countless hours talking to certain young people—almost all seniors who are now weeks from graduation—and are left with the distinct sense that we would have been just as well off to find a brick wall and bang our heads against it. In the focus of my department—Career Education, teaching employability skills—we target communication, to be sure. But I don’t know that we have spent nearly enough time addressing the art of being an active listener. And now, with the second week in June coming up fast, time’s up. With 30 or so school days to go before my students don their caps and gowns, it may very well be too late to start seeing what can be done to fine-tune this vital skill before that walk down the aisle towards the diploma.
Listening, really listening, seems to involve shutting off the running commentary in the brain. I cannot help but wonder how much useful information and advice I have missed in my 20-something years of adulthood because I was so busy allowing my rigid, all-or-nothing mental focus push out any chance of letting new (or not-so-new) and probably very useful information and advice seep in through the cracks. In my humble experience, we on the “higher-functioning” end of the autism spectrum spend an awful lot of time shoring up our defenses. We can’t possibly be actively listening to advice when we are busy planning counter-arguments. For me, actively listening has truly come to mean shutting down that running commentary for as long as I possibly can, because I know now how much useful, probably in some cases life-altering, information I have walled out in the interest of protecting myself against the world. I believe that’s what is going on for some of my students this spring. The thoughts of what comes next are so completely overwhelming that they protect themselves by not allowing the reality to seep through the cracks. But the stakes are too high to keep shoring up those defenses. As adults, the need to listen and take to heart the wisdom of those who have gone before, the wisdom of those who care about us, and in some cases, love us, is paramount for success on any meaningful level. I wish I had understood that 20 years ago, just as I wish I had understood how not being able to listen when it came to conversations about my own well-being was only hurting myself.
So as I like to say when trying to get the attention of the group: Okay ladies and gentleman, boys and girls, time to be grown-ups! Like it or not, there is pomp and circumstance in your immediate future, and if you can take the time to figure out what we mean when we say “Listen” then life will be so much less-complicated—dare I actually say, easier?—than you could ever imagine.
Good luck, kiddos. Remember, as I wish I had, that your parents and teachers really, really do have your best interests at heart, we know how scared you are because we have all been there. Let us help when we can by listening to what we have to say before deciding if we really do know what we are talking about! The results may just surprise you.
I have created my own interpretation of “putting the cart before the horse.” Under my direction (coercion?), Cameron has purchased his first car. Cameron does not have a driver’s license. Cameron doesn’t even have a learner’s permit. But now, thanks to me, he has a car.
At this point, you may have the same look on your face as my husband did when I told him of my plan for Cameron to purchase this car. But in my defense, the exact make, model, price and even color of car Cameron and I had been discussing as a potential first vehicle became available through a close family friend. It was an opportunity I just couldn’t let pass by. I also thought that Cameron seeing the car in front of the house every day would be incentive for him to study hard and pass his knowledge exam so that he could begin to learn the process of driving in his own car. And another excuse up my sleeve to counteract that look on my husband’s face was my worry that Cameron’s savings account would impact his SSI application. (The application that will be filed if I ever get up the strength to go through the process of scheduling an interview at our local Social Security office.) So finding a good deal, knowing the previous owner, and moving cash into an allowable asset all seemed like perfectly fine reasons for Cameron to purchase a car before he knows how to drive. Right?
Prior to purchasing the car, Cameron had attempted the knowledge exam once before. I hadn’t really helped him study, other than reading the manual and doing a few online sample exams with him. The fact that he didn’t pass wasn’t a great surprise. But he needed a state issued ID card, so I thought while we waited in line at the DMV, he might as well give the exam a try. Since the first failed attempt, I made study notes on index cards for him. I illustrated them to appeal to his visual learning. I highlighted the manual for him. I went through practice test after practice with him. I don’t claim to be a great teacher or tutor by any stretch of the imagination, but I really felt that the studying we were doing together would help him pass the exam. So when Cameron tried the knowledge exam for the second time last weekend and failed again, I felt a very familiar pang of self-doubt. Was I in denial all over again? Was this like Cameron being in kindergarten and me still hoping to see him catching up on standardized test scores? If I feel this disappointed by his not passing, how does he feel about it? Am I setting him up for undue anxiety over driving?
Well, maybe failing twice is not a reason to despair. I know Cameron wants to drive, and Cameron has never ceased to amaze me by what he can do when he puts his mind to it. But this is the first time he’s been tested outside the comfort of his special needs, modified-curriculum school. Will he pass the test? I honestly can’t say. But I can say that reality checks aren’t just for the newly diagnosed.
I think there is a big need for adults within our autism community to come together as advocates to have our voices heard. I’ve believed this ever since I started to become an advocate six years ago.
The popular image of autism today continues to focus primarily on children. The reality is that there are already many adults with autism who will be joined by a growing and staggering number of children. This is why our voices as adults with autism are so critical. We need to define the conversation to succeed as adults. We must communicate how we feel and what we need so we can pave the way and help those around us be ready for all the children who will become adults in the next decade.
I sometimes question if we are changing the conversation for those who are in that neutral area. During my graduate work, I took a course in persuasive communication keeping those people in mind. Not people who are our supporters already but those who are completely neutral about the conversation. The more media attention I see focused on children I can’t help but believe those people in the middle also need to hear more from the adults on the spectrum. The conversation must be that we need more supports in the area of transition, training, employment, housing, insurance and medical care. Adult services need to be a national priority.
This need for this discussion came up a few weeks ago. I was giving a speech about having autism in my hometown for Autism Awareness Month. My presentation was centered on growing up on the spectrum and becoming a young adult on the spectrum. I don’t want to overanalyze this, but talking about my early intervention and getting kicked out of two preschools was of greater interest to the audience than discussing the need for adult services.
I guess the discussion has to start with me. To quote one of my favorite lines …
“Children with autism do grow up, and we need to be ready for them.”
I will now add …
“Adults with autism have grown up and we are not ready for them.”
The reality is that too many young adults age out of school and services at 21 and face lives with reduced supports, services, and little opportunities. We have been able to offer hope to the children. Now it is time to have the conversation expand and be about hope for the adults in our community.
To that end I would encourage all adults with autism to contact me to begin the dialogue on what services have worked for you and what is still lacking. If you are already having the discussion, include me in your dialog. If we are going to make this a platform for the national agenda we need to come together with our many voices and speak as one adult community.
Have you ever wished you had a time machine, so that you could intervene and change the past? That’s how I felt when I read Liane Kupferberg Carter’s recent column, “The Way You Look at Him.” As I read, I wanted a DeLorean; I longed to arrange for someone to show up in that waiting room and give Mickey a whole-hearted look of acceptance. The time-travel angle hasn’t worked out yet, but reading Carter’s moving account reminded me of my own recent experience with my brother drawing stares from strangers.
As Willie was having his “Kicking the Trees” meltdown during our family visit, I noticed a desire to hide, or “cover up,” his behavior. We were in a residential neighborhood, and I could practically feel people turning away, pretending not to see and hear what was going on. I was struck with the thought, After all these years, how can I feel embarrassed by Willie’s behavior? But, as Carter notes in her column, trying-not-to-stare glances can still cut to the heart, even after years of dealing with them. By contrast, our parents didn’t seem to give the general public a second thought as they dealt with the meltdown. This makes sense. If your son is in the middle of a meltdown, you don’t have much attention left to spare for bystanders. But if you’re the older sister, sitting on the sidelines and giving your sibling room, there’s more space for embarrassment to creep in.
Yet I also know that shame only takes over if I let it. If I keep my focus elsewhere—if I consider how far Willie has come in the last few years, and how proud I am of him—it invariably dissipates. And there’s a small silver lining to the social awkwardness factor: Seeing how others interact with Willie has proved an excellent gauge for my own friendships and relationships. Ask any autism parent or sibling, and they’ll affirm that the simple acts of kindness are treasured. When people greet Willie with respect, when they make efforts to include him in a conversation, you’d better believe that I notice.
At the same time, I empathize with those who don’t know what to say when they meet someone who doesn’t communicate in a “traditional” way. I’ve been in that position myself.
When I lived in Washington DC, I rode the Metro frequently. One day, I noticed a young man sitting on the floor of the train car. He had a sketchbook on his lap, and a pack of markers close at hand. He was drawing, and an older gentleman—his father, perhaps—was seated in the row closest to him, leaning forward in a protective way. After a few moments, I had a sense that this young man might be on the spectrum. I didn’t want to assume, but his slight hand-flapping and rocking made it seem likely. I’d never seen him before, and I wished for a way to let him and his father know that I wasn’t thinking, “weird” or “strange” or “what’s wrong with him?” On the contrary, his presence brightened my day. His intense focus reminded me of brother at the piano; it made me smile.
My stop approached, and as I made my way to the door, I took the opportunity to look down at the young man’s drawing. The subject escapes my memory, but I remember the quality of the workmanship. “That’s a great drawing,” I said sincerely. (I can barely draw a stick figure.) And as I spoke the simple words, I realized that they were sufficient.
The young man looked up with what might have been surprise; his expression seemed to say, Do you mean me? My drawing? I nodded and smiled, feeling foolish and glad all at once. Then the doors chimed, and I stepped off. As the train moved away, tears sprang to my eyes. But they weren’t about pity, and the look on my face was not what Carter calls the, “there-but-for-the-grace-of-God-go-I Tragedy Look.” Instead, it was something like, Here, by the grace of God, for just a moment, we met.
It is always an interesting conversation when someone asks me the question, “What do you do for a living?” My response is always: “I work at an Autism Center as a Supported Employment Manager,” and the looks I get are priceless. I usually have to explain that I help adults with autism find jobs in the community. Then I usually get one of two responses. Sometimes I hear, “That’s great, you have a big heart and a lot of patience,” or I hear “I know an autistic boy who works outside the grocery store I go to.” I usually laugh at either answer but the second answer makes me laugh a little more. When most people hear of someone with autism working they normally think of the guy at the grocery store collecting carts, or the greeter at Wal-Mart. The truth of the matter is that adults with autism are employed everywhere we go, just may not see them as much.
When I first started working at the Autism Center, I thought it would be a good idea to ask the individuals in my caseload, “What do you do for a living?” Looking into their eyes as they would tell me their jobs, I could see they were very happy with what they were doing. Some of the jobs would be considered a starting point for me or someone else, but for someone with autism this was their career and part of their routine. But just like me, they sometimes get burnt out and want to change jobs.
An example of this happened about a year ago. I had an individual who had been working at the same job for about 15 years in the same position. This individual was working at a library collection center that would sort books, and movies to be shipped out to libraries around the county. For some reason last year, this individual did not want to work at this library collection center anymore. I would find notes on my desk saying “I quit, I don’t want to work at the library anymore.” The worst part was I had to call this individual’s parents and tell them he wanted to quit and we could not force him to work there anymore. One of the parents said, “Do whatever you can to keep him there employed.” However, I am not going to force anyone to do a job they are not happy with. So, I pulled the adult from the job until I could find something else for him.
A few months later, after pushing this individual into job tries to learn what skills he had, I found him a new job. It was working at a Ruby Tuesday in the area, rolling silverware before the lunch shift and cleaning the tables before people came in. Now I had to make another phone call to his parents telling them this time that I found him a different job. I will never forget the words the mother said to me. “The reason I pushed for him to stay at the library was because I did not think he could work anywhere else, but I am glad you have proven me wrong and I did not think it would happen.”
That is the reason I do what I do for living. I don’t do it for the money, because working in the mental health field is not a six-figure job. The reward is being able to tell a mother or any parent that I found a job for their adult child when the parent thought their son or daughter would never be employed. That is what I do for living and that is what I will continue to do for living.
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