So, I was talking with one of Reilly's doctors about his serious romantic relationship, and potential hazards of sexual activity among young adults with disabilities. What, I asked, can we do to keep him safe? Is vasectomy an option?
Nope, said the doc. “Well, what CAN we do,” I implored. “Tell him to go to www.bedsider.org,” he said. I immediately put it into my Google machine, and was a little surprised, and then awed, that this retirement-age physician even knew about such a site, much less recommended it to his young adult patients. It's a no-nonsense, down-to-earth, judgment-free website that gives teens and young adults the medical and practical information they need to stay safe while enjoying an active, normal sex life. No preaching, just teaching. No guilt, no shame. It's not a website geared especially for a disabled population, but it's easy to use and helpful with not only sex and contraception questions, but some thorny relationship issues, too. (According to the website, “Bedsider.org (Bedsider) is an online birth control support network for women 18-29 operated by The National Campaign to Prevent Teen and Unplanned Pregnancy, a private non-profit organization.” Although its primary audience is women, it provides information for men as well.)
I'm guessing there are a lot of parents, of neurotypical teens as well as those on the spectrum, who would be shocked and horrified that such a thing exists. One parent I talked to recently was in complete denial about her daughter's sexual activity, until it hit her in the face. She felt she had sheltered her daughter her whole life, only to have her go away to school and discover sex. She wondered if she should withdraw her daughter from school, keep her at home where she could be safe. She thought about putting her daughter on the Pill, but didn't want to “encourage” the sexual activity. I understand that sentiment, and her fear and worry. But keeping our children from experiencing the world isn't preparing them for independence. All we can do is to give them the tools they need to keep themselves safe. Then hope and pray it works. Just like with our neurotypical kids. With a lot of kids on the high-functioning end of the spectrum, we parents really have not much more control over their actions than we do our typical college-age children. Yes, our ASD kids are more vulnerable in many ways. But they have the same desires and urges that everyone else has, and, I would argue, the right to pursue as independent a life as possible.
In Virginia, where we live, a young woman with Down Syndrome recently challenged her parents' request for guardianship and prevailed. Her parents had asked the court for the right to make medical decisions for her, as well as to decide where she would live and who she could socialize with. The judge ruled that 29-year-old Jenny Hatch, who has an IQ of 50, needs some guidance with those decisions in the short term, and awarded temporary one-year guardianship to a couple who were Jenny's choice. Their guardianship apparently would be less restrictive than her parents'.
It's a reminder that, though we have a young adult child with disabilities, he's more normal than not. And we can't keep him in a bubble for the rest of his life. It's scary, but important, to encourage his independence. Somewhat surprisingly, Reilly seems to get that we don't want to control him, we only want him to be safe.
As with so many life problems, there are no easy answers. A Google search turns up lots of questions about things like vasectomy for young men with ASD, but few actual answers. Everyone feels your pain, but they're not sure there's a lot you can do to protect sons without violating their rights. The best bet seems to be very concrete, nonjudgmental sex ed. Parents, educators and therapists all need to accept and respect the innate sexuality of young people on the spectrum. Though they may seem childlike, they aren't children. It seems to be possible for many on the spectrum to enjoy fulfilling sex lives, and some are even raising families.
I don't know if any of my research into the subject has eased my anxiety. It has broadened my view somewhat, and made me start to look at Reilly not as a child with disabilities, but as a young man starting to find his place in an adult world. He's making some mistakes, and, I think, learning from them.
Now I'm going back to bedsider.org to read more about Frisky Fridays.
Last week, I wrote of my unusually optimistic nature when it comes to Cameron. This optimism was slightly foiled by a less than glowing review of his recent summer employment. Unfortunately, my declining optimism has spilled over to Cameron’s academic future.
Cameron has just completed a driver’s training course at a local community college. This course is unique in that it’s a course specifically for students with disabilities, and it’s taught by a special educator. As required in the course description, I attended the first day of class with Cameron, so that I could learn more about the requirements of being a mentor driver. This was the first time I had attended a full class with Cameron since he was in primary school. My experience that day in the classroom with Cameron altered my expectations for his postsecondary education.
I sat directly behind Cameron, whom I positioned right in front of the instructor, in the first row. I found myself tapping Cameron on the shoulder each time the instructor directed the students to retrieve a certain form from the provided folder. I found myself being one of “those parents” by filling out one of Cameron’s forms for him. (I cringed when the instructor caught me in the act of completing that form.) Even with just a view of the back of Cameron’s head, I witnessed his focus, which was meager at best, deteriorating to the epitome of distraction. And there, before my eyes, flashed the images Cameron auditing credit courses in community college, and gaining some insight from the course material without the pressure of receiving course credit. Yeah … that’s not likely to happen.
To add insult to the injury of my realization, I received a text from Cameron shortly after he had left for class one day last week. He had forgotten his course material, and asked me to bring it him on campus. And, while I was at it, could I also bring him something to write with? Really? I sighed, and contemplated the courier fee I would charge him for making the journey to campus for him ... Except, I was unable to locate the missing folder. Cameron found it in his desk when he arrived in the classroom. Organization and being prepared for class have never been areas of concern in Cameron’s academic history. Now that he’s a year away from postsecondary education, he’s all of a sudden struggling with the basics.
I really had not considered how difficult the transition from high school to postsecondary might be for Cameron. And I’m not sure what I can do to better prepare him for that transition. If he were to take courses at a community college, he’s going to be required to sit in a classroom for more than the 50 minutes of his high school courses. Most classes won’t meet every day, so there will be a different schedule depending on the day of the week. Not that I already had Cameron’s postsecondary situation nailed down, but now, after this driver’s training experience, I suddenly feel at a loss as to where to even begin. Apparently, I’m not the only one feeling the pressure. Cameron’s hyperactivity level reached new heights these past few weeks. When I asked him about it, he said it was because of the commute on public transportation and the three hours in class. Good for him for being able to identify the stressors. But … if one class is stressing him out, what does the future hold for him?
Self-advocacy can be very interesting. It’s given me the ability to advocate for a cause that is very close to me on a personal level. With the help of organizations such as the Autism Society and Autism Speaks, I have learned to build my voice in our autism community. For the last six years I’ve been focused on becoming an advocate for persons on the spectrum. Three years ago Senator Robert Menendez (D-NJ) recognized those self-advocacy skills in me.
Senator Menendez saw one of my posts while I was interning for Autism Speaks and reached out to me. A few months later I was completely stunned when his office said he wanted to see me in Washington. I literally thought it was a joke the day I got the call. I was in complete and utter shock. A few days later I was on my way to Washington D.C by Acela train. During my visit I didn’t know what to expect. When I finally got to his office, he greeted me with warmth. He showed me around his office and then took a seat and let me share my perspectives with him. After we spoke for a while, he asked about my opinion on public policy! I was amazed. The conversation led to the discussion of the Combating Autism Reauthorization Act which would provide increased federal funding to help those with autism.
Once the day was done, I thought that was probably the last time I was going to see the Senator. A year later the CARA act passed. That was when I got the next call. He wanted me to speak on the day of its announcement in my hometown of Jersey City! We’ve kept in touch ever since. Just three weeks ago, the Senator gave me another opportunity to appear with him and speak as he announced the AGE-IN Act, new autism legislation he is sponsoring to help adults like myself succeed. This legislation is focused on helping with the challenges that young adults with autism deal with when they “age out” at 21 of the public school systems supports.
Through my experiences with the Senator I’ve been blessed by his generosity. The speech that I gave most recently with him was one I will remember for the rest of my life. In my 10-minute speech I got to share how I met the Senator and how he has become an influence not only in my life but the lives of countless young individuals with autism in New Jersey and throughout the country. In my speech I also referenced the need for supports. I told the audience that the time has come to change the conversation from “children with autism” to “people with autism” when it comes to services. I would now add that we have to be ready for all of these children as they reach adulthood.
This message is something I’m grateful I’ve had a chance to tell to local and national audiences because of the support of the Senator. Moving forward in my mentoring I hope to use the opportunities I’ve been given to create other opportunities for young adults to have their voices heard too. I hope this leads to a stronger and more aware community for everyone.
The time I spent with Willie during my recent visit to New Jersey was remarkably uneventful … on the surface, that is. There were no major meltdowns. He did wake up agitated in the middle of the night a few times, but he regained calm quickly. It was—and I hesitate to say this, for fear that I might somehow retroactively jinx it—peaceful. Willie and I played Uno, watched movies, and took Chevy the dog for walks. And when we helped our grandparents move into their new home (they've relocated from Arizona to southern New Jersey), Willie was the undisputed star of the day. He broke down boxes, peeled off ugly pastel-pink window blind coverings, and took care of Chevy too. Our extended family commented on Willie's composure, and indeed, he seemed to manage the stressful day better than anyone else. (In the end, I'm pretty sure he the only one who didn't get into a single argument.)
For so long, I've wished and hoped and prayed for Willie to lead a more peaceful life. And now that he's calm, I'm the one struggling with feelings of explosive, unexpected anger. (Talk about a role reversal.) In the past few weeks, I've been facing the fallout from a lifetime of people-pleasing. I'm uncovering deep-seated reasons why I deal with shame and false guilt and perfectionism, why I constantly apologize for things that aren't my fault, why I connect so deeply with stories of people breaking free from legalistic, exclusive, and spiritually abusive religious groups. (Spoiler alert: I've been there.) Given this inner turmoil, I desperately needed the peace I felt just “hanging out” with Willie. Even if my brother is preoccupied with, say, typing film credits, I enjoy just being in his presence. And I've come to believe that this is probably the best way for me to love Willie: to approach him without agenda, receptive and willing to be surprised.
With that in mind, I sat down next to Willie one evening. I didn't want to talk; in fact, I just wanted to be with someone who wasn't expecting anything of me. It was the same day we'd helped our grandparents move, and I was exhausted and edgy after dealing with the conflicts that had arisen during the day. Willie, however, was calm, happily playing a Disney video repeatedly. I recognized the song (as many siblings can boast, I am an expert in all things animated). Willie was listening to “God Help the Outcasts” from Disney's “The Hunchback of Notre Dame.” He started singing softly, with great tenderness. He was doing an excellent imitation of the gypsy-character vocalist, yet I also had the sense that he was putting his own feelings into the song.
These were the words that Willie was singing: “I ask for nothing / I can get by / But I know so many / Less lucky than I / Please help my people, the poor and downtrod / I thought we all were the children of God.”
There was something profound shimmering in those words. I listened closely, and beneath the surface, this is what I heard him say to me:
I know I'm different in some ways. I know I don't think or act like others. But I don't need pity. I already have everything I need. What I want is for others to have what they need. That's why I pray for you and Jonathan and Christian and Raoul [two children our family sponsored in Ecuador] every night. And haven't you noticed? Every time I pray, I put others first. No one taught me to do that. I pray for all of you, and then I say, “And please help Willie be calm.” Every single time.
Why did Willie choose that song? I'll never know. Maybe it was random, but it didn't feel that way. Instead, it felt like manna falling from the sky, like receiving the thing I needed most before I'd even thought to ask. And as I struggle with how the concept of God has been misused in my life, that moment has become a touchstone. Leave it to Willie to remind me what's worth believing in.
It seems to me that for all of my life, for as much as I appreciate it, I have been at odds with the natural world. My parents have always encouraged me to be outside and take in the scenic beauty of our world, but I still get a bit of the jitters whenever I am doing something in an outdoor setting. I think this might be due to how my sensory system affects me when it comes to preferring a controlled environment such as indoor settings; the outdoors is not as organized as being in a room setting, so my brain cannot process it as effectively. Sudden gusts of wind, getting my hands dirty, and being around bugs and unpredictable animals remain my biggest pet peeves with the outdoors, but once I get past them, I like communing with nature. All three of these troublemakers were out in full force with two activities I did with my mother this past week: attempting to fish for the first time in a very long time and picking blueberries.
The last time I remember fishing was at a pond in the back of my aunt’s house when I was very young. I did not have a lot of patience and gave up after a few minutes. I did not touch another fishing pole for many years after that. Recently, in a move to get me to try more new things, my mother bought a pair of new fishing poles for us to use together. After getting a supply of fresh worms for bait, we headed down to a nearby park and tried our hand at fishing once again. My feelings toward this fishing experience are a mixed bag. On one hand, the weather was absolutely perfect for being outdoors with the sun shining down between the trees. It was also warm and very comfortable with a gentle breeze that was a welcome respite from the strong winds of the day before. In addition, we shared the riverside with a family and their children who were also learning to fish. I admired the children’s persistence in their attempts to catch a finny friend and the shouts of joy I could hear from their direction when they apparently succeeded.
On the other hand, my own attempts at catching a fish were less successful than I would have liked. I did not want to touch the worms; they were slimy and kept in dirt, so my mother handled them and put them on our hooks. Also, operating the pole was a bit more involved than I had imagined it would be. Just getting used to holding the pole proved a challenge for me. Another issue I had was casting the line forward. As I did this motion with the pole, I had to press a button on the reel to let the line out. This combination of maneuvers was a bit difficult for me to accomplish, and my cast would often fall short into the reeds on the side of the river bank. My mother helped me to make better casts by standing behind me and employing hand-over-hand instruction so I could better understand how to stand and pull my arm back to cast. By doing this, I was able to cast my line out into more open water. The bugs were another annoyance. I really cannot stand them buzzing around my head and body. When they are present, I cannot concentrate on what I am doing at all, and I just want to leave and go back inside. Neither of us got a fish that day, but I did stay and try. My mother was very proud of me for trying and we plan on going again very soon.
Our other outdoor activity came a few days after my less than spectacular day of fishing. Since I have now started to eat blueberries, my mother wanted to stock up on a few quarts for making some of my favorite dishes this winter. So, we drove to a blueberry farm to pick some of the juicy fruits. We roamed among the large grove of blueberry bushes plucking the largest, ripest berries. We had a pail full when we were through.
I had a much better time berry picking than I did fishing. It was sunny with a slight breeze; just the way I like it, and I had no problems picking the right berries. The only issues I had were that the ground was a bit tough to walk on with all of the roots and vines in the way making it harder for me to keep my balance, and I got a few bug bites. I was not happy about this. I was, however, glad that my hands did not get very dirty; I had no blueberry stains.
Being able to go fishing and pick berries felt fresh and new. My outdoor problems are very familiar to me at this point of my life, but I will not let them hamper experiencing new activities. I also am very happy that my parents continue to encourage me to be outside as I truly do enjoy all that nature has to offer. I just have to keep pushing through the hurdles that my sensory system puts in front of me to enjoy it all.
Maybe I came to visit too soon.
“Can I see the mark?” I asked near the end of our FaceTime session.
“Sure,” the assistant said.
I moved my iPad so Madison could see more of my face.
“Hey Missy,” I said using my pet name for her, “I just want to see your boo-boo, Sweetie. Let me see under your pretty bangs.”
“Madison, look at Mommy,” the assistant said, lifting up Madison’s hair so I could see.
“Wow, it’s practically gone,” I said, squinting into the display. “I can’t see it at all.”
“Yes, it healed very quickly.”
“Thank goodness.” I watched Madison tease me with her impish smile. “And remember,” I prompted.
“I love you,” she replied.
“Always and,” I prompted again.
“Forever,” she answered, smiling her goofy grin.
“See you soon, Missy! Bye-Bye.”
And I let her hang up first, part of the learning process of our “Family Time” session.
Although I try to visit most Tuesdays, sometimes I can’t make it. So, we’ve tried to generalize “Lunch with Mommy,” on the schedule to “Family Time,” teaching her how to use the iPad for conversation.
I rested my chin in my hands after Madison ended the session. Ah, my Madison, my many-mooded Madison. I had thought about her boo-boo all week.
She had just started her new adult services program. Although housed in the same building as the school, there were still significant changes in her daily routine. When we came for our Tuesday lunch outing, I could tell she was unsettled. She was louder than normal and kept giving herself pressure, pressing both hands to her chin, a signal she was trying to calm herself.
We made it back to school with no incident. Ten minutes after I arrived back home, however, I got the call. When Madison returned, she threw herself on the floor and bloodied her head. She was fine, no stitches required.
“I’m so sorry,” I said to the assistant. “I knew she was fragile. Is she ok?”
“Yes, we cleaned her up and she’s back on track. She’s happy now.”
I exhaled and hung up the phone.
Maybe I had visited too soon.
It was the first week of her new day program. New classmates. New teacher. New schedule. Maybe I should have given her more time to adjust.
It felt like the same “no man’s land” I’d experienced when I launched my other kids to college. Do I call or not? Text or not? Will it be supportive if they hear from me or will it remind them of home and make the transition more difficult?
Same questions. Different setting.
With my college kids, structure helped. We set aside time for phone calls for my oldest and Skype with my youngest. And I did give them time to settle in their new routines.
I’d hope our outing would be part of the stability in Madison’s transition, but maybe it was upsetting—a reminder of what used to be.
The fix? As usual—time and effort.
I decided to give her a couple more weeks to settle in. The upcoming 30-day review will be a good snapshot of her transition progress.
And just like the process with her college siblings, I’ll adapt and adjust—and figure out how to be part of my child’s new world.
For the record, I am a glass-half-empty kind of person. I inevitably get in the wrong line at the grocery store, and if there’s a chance of rain, it will rain … as soon as I go outside. Over the years, I’ve worked hard to have a more positive outlook, but the reality is that I’m a pessimist at heart. However, there is one category where I have surprisingly found myself to be an optimist, and that is all things concerning Cameron. Here’s what I’ve learned about optimism versus pessimism: When you’re pessimistic and wrong, it’s a good thing. You assume the worst, and when it doesn’t happen, it’s a pleasant surprise. When you’re optimistic and wrong, not so much.
I have always felt there can be nothing bad about Cameron working. Any work experience is good experience, as far as I’m concerned. Cameron has always had such a good attitude when it comes to work. The thought of him not being successful on a job had never entered my mind … until I had a chat with the restaurant owner that was kind enough to give Cameron a temporary internship this summer. Cameron was taking chips and drinks to customers and bussing tables. On the last day Cameron was scheduled to work, he called me right after I dropped him off, and said the manager wanted to speak with me. (Uh oh.) She told me that business had been slow, and there was nothing for Cameron to do, and he gets anxious without something to do, so please come pick him up. I’m thinking that the time Cameron had worked previously, they had been so busy and he didn’t have time to eat. (Which did not make Cameron a happy employee.) I was wondering how at 11:00 a.m. on a Saturday, the manager already knew it would be a slow day?
When I picked Cameron up, the manager explained that she really couldn’t have Cameron in the kitchen, because it was too small, and she couldn’t have him pacing around in the dining room. Fair point. But then came the zinger: The manager told me that customers had complained about Cameron because he was putting his finger in his nose, and scratching his backside. (Ewww! I would complain too.) I think the manager was politely firing Cameron. She did give him a nice check for the work he had done, and told him to buy some clothes. (Was she also unhappy with his attire?)
I really appreciate the kindness and generosity that the manager showed Cameron. I realize that in the types of jobs Cameron will be in, he may not always be as lucky with his bosses as he was in this case. I spoke frankly with Cameron about what was said of him. (Even though he had been standing right next to me when it was said, it had not occurred to him to pay attention to the conversation.) He seemed to shrink a little in his seat when I spoke, so I hope that he processed what I was saying and learned from it. I know I learned a lesson from this experience. Just because Cameron enjoys working, he does not magically become the perfect employee.
Given Cody’s tactile nature, he has a strong inclination to touch and feel any plant, tree or animal if we don’t specifically explain the dangers or consequences that could be involved. But it isn’t enough to say to Cody, “Don’t touch that, it’s dangerous.”
I’m a huge wildlife enthusiast and I want to pass that on to my son. I want to share my appreciation and respect for all living things—and in some cases, healthy fear. But it is imperative that I do so in a way that he understands without question. For Cody that means going that extra step and appealing to his highly sensitive sensory network.
Snakes are very prevalent in our area. And although Missouri is home to only three species of venomous snakes, we see our share of those. Since May of this year we have had at least 10 different encounters with snakes on our 18 acres. Among them have been black snakes, garter snakes, a blue racer and a rat snake—none of which I have any issues with when they cross my path. But four out of those 10 snakes were copperheads and they are venomous.
When Cody sees a snake he’s fascinated with the color patterns and how shiny it’s skin is and how smooth it must feel, and the lure of it all outweighs the risk of a bite in his mind.
So I asked Cody to think back to when he was four years old and had to go to the hospital s due to a serious flu virus. Suddenly I had his undivided attention.
I reminded him of how the nurses put the IV needle in his tiny hand and how much it hurt back then. “Now imagine if you had to have two needles at the same time!”
I asked him if he remembered how the high fever made his body ache all over and how he shivered from the chills. “Oh yes!” he said, his eyes locked on mine.
“And do you remember when you broke your foot how it got all swollen?” I asked knowing Cody’s memory is nearly unfailing. “Yes!” he said in a whisper. “Now imagine if all those things happened to you all at once! That’s what a snake bite is like,” I said to him in conclusion. That hit home with him.
There is also a large population of coyotes in our area. One took up with a couple of stray dogs and terrorized the neighborhood for a while. One night there was a terrible ruckus on our front deck. The coyote had chased our cat up on our deck, even though our porch light was on. The cat escaped to the roof, but that’s how bold coyotes can be on occasion.
While that incident didn’t faze Cody, he was deterred from the desire to interact with coyotes on a personal level when I took him out on the deck one night and let him listen to their yips and howls in the distance. He was very put off by that sound. He said they sounded like a chihuahua that belonged to my cousin. Cody was not at all fond of her bark.
Skunks were easy. Our dog got too curious once and was sprayed. And like most of us Cody didn’t like the aroma.
Telling Cody that poison ivy will give you a rash and make you itchy wouldn’t suffice. I had to remind him of how he felt when he was 7 years old and had chicken pox. He got the picture then and now avoids all plants with three leaves.
That kind of association is what it takes to make Cody understand certain things are to be enjoyed from a safe distance. Other individuals that I know with ASD are the same way. And while there are those in society who may be led to believe that people on the spectrum don’t have the ability to learn about such things, that’s a long way from the truth. Sometimes we need to learn to teach them in different ways.
Continued from previous column.
The long-awaited day has come; the moment I've been waiting for is at hand. I'm presenting at the 44th Annual Autism Society of America Convention, leading a seminar entitled “The Challenges and Joys of Being a Sibling (And How You Can Help).” In preparation for the talk, I asked myself, What are the toughest challenges faced by siblings of individuals on the autism spectrum? In response, I'd created an outline of five top sibling challenges, along with relevant personal stories to correspond to each point. Before I begin speaking about the gifts my brother has given me, I know I have to be honest about the hard things. As a sibling, I've experienced firsthand the sense of discomfort that arises when someone starts going on and on about the gifts of autism without first being honest about the challenges.
Painting a true picture of our family's life means talking about the stories I'm most inclined to hide. The time I smashed my brother's antique guitar in anger, or the time Willie bit me on the leg during an out-of-control meltdown. Those weren't exactly our finest moments, yet I know they can't be left out of this presentation. Sharing these stories makes me feel vulnerable, yet that vulnerability is an open door to connection. With each account, I can see participants nodding; some are wiping away tears. I can sense them thinking: It's not just me. I'm not the only one who loses control of my temper, even though I love my sibling so much. I'm not the only one who's scared of an uncertain future, of what may (or may not) happen tomorrow. And I'm not the only one who struggles to be patient and kind today.
The sense of empathy flowing between us is astonishing. But what I don't expect—the true curveball of the talk—is the way the audience members jump in and participate. Before I've finished the first point in my outline, a hand goes up. And then another. I'd allotted time for questions at the end of the session, but when the second hand goes up, I let go of that plan.These questions are heartfelt, and I don't want to defer them. Grandparents ask about how to cultivate strong relationships with each grandchild. Parents ask about how to talk with their children about the future, about the possibility of one sibling providing care for another. Fellow siblings confess their fears and worries.
One sibling tells the group that, while she's looking forward to her first day of college in the fall, she's also anxious about the fact that her whole family (including a brother on the spectrum) plans to be present on move-in day. She loves her brother and wants to include him in this new chapter of her life, but she's concerned about navigating her own experience of moving in to college as well as trying to support her brother. My heart goes out to her, and I offer a few words of solidarity and support. Then other parents and family members jump in with suggestions and insights. They ask helpful questions, such as: Could you discuss a specific game-plan with your parents beforehand? Could your brother visit the campus on a different, less chaotic day? Alternately, could you see ways in which his presence on moving day might be beneficial? I stand in awe, and I know that I'll look back on this unexpected dialogue as my favorite part of the presentation. “The most revolutionary thing one can do is introduce people to each other,” writes Glennon Melton, and in this moment, I couldn't agree more.
The 75 minutes fly by; I've skipped whole blocks of text in my outline, but I couldn't be happier. In closing, I display a photograph of my brother playing the piano, and I tell the group about Willie's gift for music. Suddenly, there's a lump in my throat. When I open my mouth, the words flow out, unscripted and true: “When Willie plays the piano, he plays from the heart. I wish you could hear it. It's the most beautiful sound.”
Reilly and I just returned from a family reunion weekend in the Midwest. We almost never travel alone, just the two of us without any other members of our immediate family. It went surprisingly well. And gave me even more reason to cherish my extended family.
My family reunion is an annual event that we all look forward to all year. My husband and children have come to love it as much as I do. It's a good sized family—I’m one of 17 first cousins, and among us we have 24 children. So there's someone for everyone. But this year's turnout was unusually low, for several reasons. My husband and two oldest children weren't able to go. So Reilly and I set off on Thursday alone.
We flew to Chicago, and took the train from O'Hare into the city, proud of ourselves for having navigated an unfamiliar big-city transit system. Reilly was patient and helpful, a mode he stayed in for most of the rest of the trip. I can be a cranky traveler, as my entire family will attest. But Reilly and I had as smooth and stress-free a trip as any I can remember. Well, I did lose my credit card somewhere in Ft. Wayne, Indiana, and we had a little trouble with navigational devices en route from Chicago to Ft. Wayne, but for the most part we both remained calm and collected.
Reilly is a guy who loves connecting with cousins, old and young. He figures he has only missed two family reunions his entire life. Last summer, he insisted on taking a break during the summer program at the New York Institute of Technology to fly to Portland, Ore., for the reunion. One of the reasons he wanted to stay home for the summer this year was so he could be sure he wouldn't miss it. He checked in with various family members on Facebook in the weeks leading up to the reunion to find out who was coming. He told one and all that he couldn't wait to see them. He filled me in on who wasn't coming and why.
And this is where I brag about the family I was born into. They are unfailingly kind and accepting of Reilly, as happy to see him as he is to see them. The reunion is a time when I can completely relax and not worry about judgment or criticism. In fact, I usually don't see much of Reilly during the weekend—he's always going off someplace with cousins he hasn't seen in a year. And I know he's in good company. They have my back. They listen patiently to his often long stories, ignoring vocal tics that can make the telling grueling. They all seem genuinely interested in what he has to say, and then they tell me how great they think he's doing, how much he's progressed since they saw him last year. He feels completely at ease among them.
Reilly and I shared a hotel room relatively peacefully. He got up in the morning without much prodding and showered without much complaining. He was flexible and game for whatever came next. We spent an extra day in Chicago before flying back home, sightseeing amicably, keeping our composure even when we were lost and hot. A cool taxi ride refreshed us and we went to the Navy Pier to ride the giant Ferris wheel, enjoying the skyline views.
On the train ride back to O'Hare, Reilly was already reminiscing. When we got home, he connected with cousins again on Facebook, telling them he hopes to see them again next summer, and nagging the ones who weren't able to make it this year.
While I was giving him a ride to work the next day, he said he looks forward to the time when he and his brother and sister can bring their children to the reunion. To which I can only say, Amen.
Kids say the darndest things. Last summer, we were at a family dinner at my father’s house when Cameron announced to our hosts that I don’t like coming over there because their house is too small. You can just imagine the look on everyone’s face! The reason Cameron had made the comment was, of course, my own fault. On the way home from a get together earlier that week, I had said what a shame it was that we couldn’t all be together in the same room. Our hosts spent most of the evening in the kitchen away from the party while some of us reveled around the patio table, and some of us watched golf in the living room. Cameron filed my comment to my husband away for future use, and flung them out over dessert. (Great! He finally pays attention to a conversation without prompting, and this is what I get.)
So why am I bringing up this story a year after the fact? Because Cameron brought the incident up again last week himself. I was commenting on something Cameron had said that I found to be witty, and for some reason he responded to me with a confession about last year’s dinner at my dad’s house.
Cameron said, “You remember last year when I said you thought Pepop’s house was too small?”
“Well, I said that on purpose because you told me to stop bugging Pepop about spending the day together.”
What I thought was another awkward social moment innocently caused by Cameron, was in fact a premeditated dig at his mother intended to embarrass me. It was a strange realization, that my precious son with language processing disorders out the whazoo had formulated and executed a plan to retaliate against me using words as his weapon. Oddly enough, it was kind of cool to learn that Cameron had the capacity for such retaliation. (Even at the expense of dinner invitations!)
Don’t get me wrong. I’m not proud of Cameron’s conniving behavior. But I am a little relieved that he has the capacity for such behavior… just as I would be relieved by his capacity to make friends, even if he were hanging out with the wrong crowd. However, this incident, and his desire to come clean a full year later makes me wonder about past behavior. Were those temper tantrums in the grocery store 15 years ago uncontrollable outbursts, or were they a targeted retaliation for something? How can I help Cameron further tap into this capacity of his and harness it for good instead of evil? I guess Cameron will forever be full of surprises. Clearly I need to be very careful about what I say around him, and maybe Cameron can work on letting me know when I’ve done something to irritate him before a year has gone by. And then maybe we’ll both be fit for family dinner again.
Last week I had the opportunity to attend the 44th Annual Autism Society Conference in Pittsburgh. The three-day conference had many amazing highlights. One came from fellow Autism After 16 columnist Caroline McGraw, who did a breakout session called “Challenges and Joys of Being a Sibling." Caroline—whom I had never met before the conference—was very powerful in presenting what it is like being the sister of an adult on the autism spectrum. Caroline did an amazing job on her speech and presentation.
Another highlight, which blew my mind, involved the keynote address focusing on adults with autism. This address called “Legislative Efforts and the Autism Community” was given by Congressmen Mike Doyle and Chris Smith. These two individuals played pivotal roles in the passing of the Combating Autism Reauthorization Act of 2011 by the House of Representatives. This bill provided $693 million in federal funding to help those affected by autism. These two congressmen have had a dramatic impact for the autism community in the past. They announced that now they are focusing their agenda on adults with autism.
Even though the congressmen only spoke for about 10 minutes apiece, they each made a lasting impression on me. One quote that stuck in the back of my head was when Smith said we must change the conversation from helping “children with autism” to “people with autism." This hit home for me because for over a year I have been advocating for just that. I’ve said over and over that the popular image of autism has been of children and the conversation should now focus more on adults with autism. To have someone stand up at a national conference and support this meant a great deal to me.
Their overall message is something I think can move mountains for us! The facts are clear. The numbers keep rising for autism. Kids with autism are growing up, and we better be prepared for them. The other take-away for me was the passion behind what they were saying. Both congressmen know that the future is going to be difficult because of the current spending cuts, but they refuse to use that as an excuse.
Finally, a personal highlight for me at the conference was the friendships I made with other young adults on the spectrum. As someone who has a full-time job along with several part-time jobs, it’s difficult to fit in a social life. These three days helped me by being with others my own age along with gaining some great perspectives into autism.
It was also the start of one of my new positions as a member of Autism Society’s Panel of People on the Spectrum of Autism Advisors (PSA). As one of the youngest members on the panel, the social opportunities here along with the opportunities to be mentored were plentiful.
Overall, this was my fourth year at the conference and as in prior years, those three days have done wonderful things for me and for that I’m grateful.
I could say I have butterflies in my stomach, but that would be putting it mildly. The flock fluttering through my abdomen is more like … condors. Given the circumstances, though, I can't fault myself for feeling them. In this moment, I'm reading out our directions as Mom weaves the family minivan through downtown Pittsburgh traffic. We're navigating an unfamiliar city on a tight time frame, and I'm mentally rehearsing my presentation while praying that someone, anyone, decides to attend.
All too soon, I see the glass facade of the massive David L. Lawrence Convention Center is looming above us. It's taken a great deal to get here—two flights from Alabama to New Jersey and a six-hour drive from New Jersey to Pittsburgh. Now, we've arrived at the 44th Annual Autism Society of America Convention, and I'm about to lead a seminar entitled, “The Challenges and Joys of Being a Sibling (And How You Can Help).” I've been planning and preparing for this day for the last six months, but I have no idea whether or not anyone but my mother will be in the audience. I just know that I have made it this far, to Pittsburgh, to the registration table, to Room 307.
I know a few more things, too. That the technician who helps me set up my PowerPoint presentation is kind and encouraging. That holding the wireless remote presentation clicker in my hand makes me feel very mature and professional. That I just met Kerry Magro (fellow columnist for Autism After 16 and personal hero) for the first time. That my mother is sitting next to me with anticipation and excitement shining in her eyes. These are the things I know, so I cling to them. And as the clock ticks closer to 1:30 p.m., I remind myself of the most important thing: That there are actual parents and siblings entering the room and finding their seats. That it's a tremendous honor to be here, and that every person who walks through the door makes our long journey worthwhile. That I am going to share from my heart my life's story. That I am going to show up and give this everything I've got.
In the session, I plan to cover issues such as sibling responsibility, rivalry, and rage. In sharing my family's stories, I hope to help the audience take an honest look at the stresses their families face. Yet at the same time, I want to emphasize experiences of joy and connection. How will I balance the two? I'm not sure, but I'm ready to try. That's good, because a woman named Wendy is introducing me, and there's no more waiting now. It's time. Though my hands tremble, I step up to the podium with a smile on my face. To begin, I give the group a brief overview of life with my brother, Willie. I tell them about his gifts and challenges. I introduce our mother, and I can tell the audience knows why. From the first, I see that they sense what I don't say in words: That my parents are my heroes.
With the presentation clicker in my hand, I share photographs of Willie, of our family. I tell them the Snow White story, about what it means to discover windows into my brother's mind and heart. Those windows may be few and far between, but what I can see through them is unbelievable. But before we talk about the beauty of being a sibling, we have to be honest about the difficulties. We have to talk about …
To be continued ...
When I was a young boy, I participated in a hippotherapy program. (HIppotherapy is therapy through horseback riding.) I worked on many of my challenges such as hand-eye coordination, balance, crossing the mid-line, gross motor strength, and many other issues while riding a horse. I greatly enjoyed my time with in this program and it helped me to improve physically. Recently, I had a chance to revisit hippotherapy, and I found that I still enjoy being around horses, riding, and doing the exercises that I remember from my childhood.
There were a few bumps in the road, though. I had difficulty climbing onto the horse because I am taller and weigh more than I used to. It took more than a few minutes to accomplish this task with the help of my therapist. She had to show me how to swing my leg over and pull myself up so that I could get the movements down. Once in the saddle, I had some issues with my sensitivity to people touching my feet. It has been a life-long sensitivity, and, even though my therapist asked permission and I gave it, it was difficult for me to control myself when each foot was being fitted to the stirrups. I did manage to tolerate it, however—a fact that I am proud of. It helped to look away while they were touching my feet.
The new program is structured in a similar way to my old program, with one key difference: whereas the old program played out in an indoor environment, the new one takes place in an outdoor arena, a fenced-in area. A few cones were placed around the arena to mark off a walking route. Being in an outside arena is very different than riding in an inside arena. An inside arena is quieter, flat, has a well-defined walking area, and has sawdust as its base. An outside arena has all the noises of the outside including the wind. The ground is not flat; there were dips, slopes, and angles in the walk area that I had to work around. This arena has only cones to mark out the walking route, and has grass as its base. I had to adjust to these differences as well as reacquaint myself to riding again.
My therapy horse’s name is Sonny, and he is a calm, friendly steed. My therapist walked in front of me and Sonny and there were two side-walkers that held onto each of my legs as well as someone behind Sonny to monitor the way I sat in the saddle. I was glad they were there because I did not want to fall off the horse my first time back. Thankfully, that did not happen.
I spent a large portion of my session getting used to being on a horse again, operating the reins, squeezing my legs to make Sonny move, and doing a few exercises. It turned out to be more physically strenuous than I thought it would be, but I enjoyed it very much.
The rest of my time was spent speaking with my therapist about what I wanted to do during future therapy sessions. We worked out a rough program that will include many exercises and, eventually, have me taking the reins by myself to guide Sonny around the arena on my own. I am really looking forward to riding independently.
After the session was over, I helped to take Sonny in for a cool-down and brushing. Sonny, just like me, was hot and sticky from getting so much exercise in the humid weather. I brushed his coat with a small brush and spoke softly to him and thanked him for the nice ride and for being so well-behaved. Bonding with my therapy horse this way was always one of my favorite parts during my sessions as a boy, and I was happy to find out that I still enjoy it just as much now.
Overall, I would say that this first hippotherapy session went smoothly. My memories of the old program helped immensely in acclimating to the new one, but I also learned many new things about riding on and controlling the horse. The outdoor environment is also a refreshing change of scenery. I hope future rides will be just as rewarding and eye-opening to me as this one. I love riding horses, and I am so glad that I can saddle up again.
“I have a girlfriend,” Mickey announced.
“You do?” I said. “Tell me about her.”
“She doesn’t talk much,” he said. “She’s shy.”
I’d heard about her a few weeks earlier, when his teacher Jackie had emailed me about the friendship that was blossoming between Mickey and the girl in the classroom next door.
Caroline goes on a daily walk on the bike path and I have been letting Mickey go with her to offer encouragement—he quite enjoys this … I have to tell you that his mental demeanor is so improved when he gets that physical exercise—and it boosts his self esteem, too, because he thinks he is helping Caroline.
Soon after, Jackie emailed me this news:
Just letting you know that Mickey asked his friend Caroline to the prom today … We will find out what color her dress is in case Mickey wants to get her a corsage.
“Oh my. I think I need a tissue,” I told my friend Beth.
“Are you kidding? I’d need a whole box,” she said. “This is a monumental milestone moment.”
I phoned the florist. The afternoon before the prom, I took Mickey to the shop. With a big smile, the florist produced a small white box. Carefully the man peeled back layers of tissue paper to reveal a wrist corsage of rosebuds and ribbons nestled within. Mickey peered at it silently.
“She’ll love it,” the florist assured him.
Mickey nodded. All business, he pulled out his wallet. “How much does it cost?”
Mickey placed two 20 dollar bills on the counter. He remembered to wait for his change. Then, as we walked back to the car, he confided, “I hugged Caroline today.”
“You did? What did she say?”
“She said, ‘I love you.’”
“Really,” I said, feigning nonchalance. “And what did you say?”
“I said,’ I love you too.’”
The prom took place in the school’s gym. Students were decked out in their party best. Parents were invited too. “But we shouldn’t hover,” I reminded my husband Marc. (A reminder to me as well.)
We watched from the sidelines as Mickey and Caroline clasped hands. Together they jumped up and down, with looks of sheer joy on both their faces. Each time he took her by one hand and twirled her around, teachers and staff applauded. Marc and I kvelled—a Yiddish word that means to burst with pride and pleasure for one’s child. It’s related to the German word quellen: “to well up.”
Which I confess I was also doing. A lot.
Because here’s the thing: I never expected him to go to a prom. Prom was one of so many things in the litany of what we were told he would never be able to do. He would never be social. Never have empathy. Would always prefer solitude.
Why do professionals persist in telling these things to parents? Especially when it was clear—even from the earliest days—that our son liked—in fact, craved—connection?
Yet here he was, at a prom. With a date. Maybe “prom” didn’t look the way I thought prom would look, but this wasn’t about me. It was time for me to let go of any lingering regret for what wasn’t—and to accept what was right in front of us. This was still a prom. His prom.
And Mickey was incandescent.
Mickey and Caroline jumped and twirled for 45 minutes before Mickey finally joined us to announce: “I’ve had enough.”
“You need to tell Caroline,” I told him. I watched him return to her side. He hugged her gently. Started back towards us. Stopped. Turned. Hugged her tenderly once more.
Then he asked his Dad, “Was that appropriate?”
A lump-in-the-throat moment. That he felt he had to ask … well of course. Because for most of his life he’s had teachers and therapists and parents guiding him on what is appropriate and inappropriate behavior.
Was it ever.
It gives me great pleasure to announce that Cameron has had success in finding a summer employment opportunity. In my previous column, Cameron had been given one interview out of the four applications I filed on his behalf. That interview did not result in a job. I guess my follow-up with the manager wasn’t as reassuring as I had hoped. Or, maybe the temporary nature of Cameron’s availability was less than desirable. Regardless of the reason, Cameron has found another opportunity. And I had absolutely nothing to do with it.
Cameron’s grandfather is the hero in this case. I had informed my dad of my intentions to find work for Cameron for the four weeks we would be on my father’s home turf, and he laid the ground work prior to our arrival. He took Cameron’s resume around to a few local restaurants, knowing full well the type of environment that would be ideal. My dad knows the ins and outs of Cameron as well as I do, as they always spend special one-on-one time together whenever we visit. Dad says his relationship with Cameron is successful because he has no expectations of Cameron. Cameron can just be himself, and as long as there is putt-putt, bowling, and pizza in the mix, Cameron is happy.
After my futile day of online application completions, my dad stepped in and offered to take Cameron around. They left the house, and hadn’t been gone 20 minutes when I received a call. Cameron had a job as a busboy and would start working the next day from 11:00 a.m. to 2:00 p.m. That was the extent of the details given. No one was sure if the position was an internship or paid employment, but as I’ve said before, it’s all about the experience right now. Wages are not the primary concern.
Cameron asked me to take him to work on the first day, so that I could help determine the details of his employment with the restaurant owner. The owner wasn’t there when we arrived, and when I picked him up, she was on the phone. She did tell him to come back the day after next, and he was quick to ask if employees were allowed to eat at the restaurant. To Cameron’s relief, she said he could eat for free. (Any position in which Cameron is allowed free food, should not be considered unpaid.)
Cameron is not washing dishes in his new position. He’s had two days on the job so far, and each day he has come home discussing the new tasks he has been given. It’s a Mexican restaurant, so he’s responsible for taking chips and salsa to the tables, along with beverages and refills for both. Therefore, he has much more customer interaction than he’s previously had. He was excited to tell me on the second day that he had “sweeped” the floors and filled little containers with salsa for the to-go orders. It’s impossible to ignore the pride he feels in being helpful. Cameron fully understands the importance of work experience, and he’s picked up the understanding with little influence from me. It has been intuitive to him.
It took Cameron and his grandfather 20 minutes (including travel time) to succeed in finding a solution to “What’s Cameron going to do this summer?” If only all of life’s solutions came to Cameron this easily. But, I must say, in this case, it was nice to have a solution present itself without my constant attention.
Cody used to have a habit of eating too fast and not chewing his food properly. When he engaged in this behavior his food would not digest well which resulted in him becoming sick.
It was a tough habit for him for him to break but he finally did. Over the last six months he has eaten without becoming ill afterward.
Cody is also very susceptible to becoming dehydrated during the summer. I have been able to catch the early warning signs and that’s when I begin to push the water, Popsicles and Gatorade and it isn’t long before he’s a happy camper once again.
But three weeks ago a frightening episode happened. Cody had been getting ready to go to his day program. I walked past his bathroom and noticed him standing in the doorway looking out with a blank stare. He was pale and began to stumble. I ran and put my arms around him. Cody leaned hard on me with his chin resting on my shoulder.
I tried to get him to move toward his bedroom but he couldn’t. He was unable to verbally respond to me. Then without warning his knees buckled and we both sank to the floor.
Last year Cody had experienced a similar spell. But then he had a urinary tract infection and a nasty stomach virus which we all came down with a couple of days later. So I thought sure this was another viral infection.
Once I helped him dress, we went to the emergency room where they administered IV fluids, did a full blood panel, CAT Scan, EKG and a urinalysis. Dehydration was the only diagnosis the attending physician could give us. And after receiving the IV fluids he was back to his normal, perky self again.
For the next three days we watched Cody closely. There were no signs of illness. The following Monday I took him to his day program. But a couple hours passed and I received a call from the staff stating Cody had thrown up and said he was not feeling well.
I picked him up and thought perhaps all the activities were a bit too much too soon. I kept him home the following Thursday as well to give his body more time to fully recover.
That week I saw no signs of illness. So the following Monday morning we headed for Cody’s day program once again. I dropped him off and had not made it two blocks before there was another phone call stating Cody had thrown up. I couldn’t believe it.
I went back to the facility. Upon arrival Cody seemed fine. I asked him if he wanted to stay. He said yes. I discussed it with staff and it was agreed I would take him to get clean clothes then bring him back.
All seemed well for about an hour and then another phone call came. Cody had thrown up again. This time I went to get him and take him home. While there, the staff supervisor and I discussed getting a release from Cody’s doctor before he returned to the program.
Cody had an appointment Tuesday as a follow up for his visit to the ER so I gave his doctor the rundown on what has taken place over the last few of weeks.
I told him about the fact that these bouts of illness have all taken place at his day program or on days when he was supposed to go. Is there something there that is making him sick? But if that’s the case he’s not telling us. On the contrary he says he likes it there. Or perhaps it is just over excitement from it all.
Cody’s doctor did the standard vitals and did not see anything out of the norm. He didn’t feel more blood work was necessary given the fact that he was able to view the results from the tests that were done in the ER. He said instead that he would rather Cody waited for a couple of weeks to return to his day program just to be sure. Then if Cody has no other symptoms he would issue a release and he could return then. I hope and pray the next two weeks go without any more episodes of sickness and he can return to life as normal.
The sweet-smelling smoke from the firecrackers drifts over to where the group of adults is sitting on the lake house porch. “Kids!” my husband's cousin exclaims. “Move it down by the dock, all right? We're getting smoke up here.” The children scurry; they'll do whatever they're asked this afternoon, as long as they can keep setting off their stock of explosives. They've been a part of the whole preparatory process: going to the store, selecting their stash, and dividing up the spoils so each person has a pile of brightly-colored firecrackers. When evening comes, the adults will help them set off bigger fireworks at the edge of the dock. For now, they stick to the small packages. Since it's been raining all day, they're happy to be outside, to be setting anything off. Their sense of relief and celebration is contagious, so much so that I don't mind the smoke.
As if reading my mind, one of the uncles says, “I bet celebrating the Fourth of July in New Jersey wasn't anything like this.”
“You're right,” I say, “Growing up where I did, it was different. Setting off fireworks was illegal, so it's wild for me to watch kids setting them off.”
When I was younger, my family's July Fourth celebration involved piling into the Volvo and driving to a field to watch the town fireworks show. If there were too many mosquitoes, we'd watch the sky from the car. Either way, I would cover my ears during the loudest blasts, and Willie would wear his noise-canceling headphones the whole time. Afterward, we'd drive to Carvel or Cliff's to get ice cream—vanilla with rainbow sprinkles for me and chocolate for Willie (fruit sorbet after we found out he was allergic to dairy). Ours were simple celebrations, but they had a sweetness all their own.
Today, my young niece and nephew relish setting off firecrackers, and the power that comes with knowing: What illuminates the sky is something I, myself, have chosen. Even so, I wouldn't trade my childhood Fourths. I wouldn't trade the feeling of melding into the crowd on those fields, looking out for familiar faces. I wouldn't trade sitting on the blanket with my family, all anticipation as we waited for the show to start. I wouldn't trade sitting with Willie, looking up into the dark sky. I'm sure there must have been a squabble or two, but the moments I remember are pure, peaceful.
When I remember our family's Thanksgivings and Christmases and birthdays—occasions that received the most attention—I can call to mind some difficult times, long car trips, and meltdown moments. We've had many joyful holidays, to be sure, yet I've always felt the pressure that comes with “significant” days. On holidays, I can't help but wonder: Can Willie keep it together? Will he be able to handle having this many people gathered together, this break in his routine? It's hard to relax into celebrations when you're conscious of a sibling's discomfort. It's hard to be present to relatives when you feel your brother start spinning out of control. And behavioral challenges aside, I've heard from other autism families who feel conflicted about these “special” days. We want to have traditions, to connect and celebrate, but we struggle to do so in a way that honors each family member's needs.
There's no one-size-fits-all, of course, but looking back on those Fourths, I believe my parents were on to something. They kept the celebration very simple, and very flexible. We had built-in contingency plans, like moving from the field to the car, or leaving the show early for ice cream if Willie was restless. These allowed us to maintain tradition even as we responded to the reality before us. And Independence Day was ideal for this because—in our area at least—it wasn't weighty with cultural expectations like Thanksgiving or Christmas. The Fourth could become whatever we needed it to be. Even if we just stayed home and watched the fireworks from the back porch, I still felt like nothing was missing, nothing was lost. It was a holiday distilled: We were together, and willing to look up.
Job development can be a challenge for anyone, but even more of a challenge for someone with autism. While most people work to pay their bills, there are many other reasons for seeking employment. While we haven’t historically thought about autistic adults as employable, many people with autism want to work for the same reasons that you and I do—for money, friends, housing, and to give them something to do. One question I always remember from all the job interviews I have been on was “Why would I want to hire you over anyone else?” In my current position, I do not have to sell myself to the employer but I have to sell an employer on hiring someone with autism over someone who is not autistic.
Recently, I went to a conference on just this subject and found it very useful for someone in my position. It was called “Employment Supports for Adults with Autism Spectrum Disorder” and the speaker was Dan Baker, an Associate Professor of Pediatrics at the Rutgers Robert Wood Johnson Medical School. Baker gave me a different way of looking at employment for someone with autism, and I learned a lot from his presentation. In the beginning, one of the things that he pointed out was that employment is not “all or nothing.” People can work part-time and have other day activities. The way many supported employment providers measure their success is by having all the individuals employed full-time. But success can also be measured by how many individuals with autism are employed at all, whether full-time or part-time. If someone with autism can work part-time and get paid for it, that is better then having no employment at all.
There are a lot of factors that go into job development, including the local job market and the employers’ needs. If the local job market is seeing a decline in employment, then it might be harder to find employment for anyone. Another factor is the match between the worker and the job. We do not want to employ someone with autism who does not like crowds in a place like a gym where there are a lot of people, just to have that person employed. Likewise, if the employer requests an employee able to roll 100 pieces of silverware during a shift, we should not employ someone that does not have the skills to reach that goal just to have them employed.
Baker pointed out something that I have actually shared with my co-workers: Job developers should not limit their thinking. Look at ALL types of business for employment opportunities. Just because a few stores of a certain company employ some of our individuals doesn’t mean all the individuals should be working for that company. We should look at every business around the community and see what they need. Even if a particular business doesn’t have current openings, they may know someone that does and can spread the word around that we have potential employees. One good job development strategy that anyone can do is just to start driving around looking for “Help Wanted” signs. Plant the seed somewhere. An employer may not think an autistic adult is the right person for a current opening, but they might be able to come up with some other way the individual may be able to help out their business. We need to start thinking outside the box if the goal is to have someone with autism employed.
Autism stalks me. Or at least it felt that way on a recent weekend getaway.
My husband was out of the country on business and Reilly wanted to go visit his girlfriend, Ashley, in suburban New York. It meant taking Amtrak to Penn Station, then a taxi to Grand Central and a short trip on the Metro North Hudson Line. He probably could have managed it all on his own, but I was at loose ends so I decided to accompany him as far as Grand Central. I called my dear friend, Vicki, who lives in Manhattan, hoping to spend the weekend catching up with her. No such luck; Vicki was invited to a weekend getaway in Connecticut with a group of acquaintances for tennis and sailing. “You should come with me,” she said. “I don't know that many people there.”
Seemed crazy and logistically difficult until I realized I would be at Grand Central anyway. After putting Reilly on a train to Tarrytown, I could hop on the New Haven line and join Vicki and her friends. This was all decided the day before my impromptu adventure. I don't usually do things like that. I don't play tennis or sail, and though I've known Vicki since college, I didn't realize she did, either. She assured me I could just sit and relax, which sounded great to me. And I thought it would be good to have people to talk to, after two weeks at home with only Reilly for company. I love the boy, but hanging out and conversing with his Mom is not high on his to-do list. It was a long two weeks.
Reilly and I bought our tickets and went our separate ways at Grand Central, both secretly glad to be rid of each other for a couple of days. I arrived in Westport, CT, in time to watch the group of avid tennis players in a sort of pick-up game of baseball.
Next was a group dinner at Paul Newman's restaurant in Westport, The Dressing Room. Of the 12 or so people at the dinner, I knew only Vicki. A nice-looking 20-something boy named Evan sat down next to me and started talking. His conversation style was eerily familiar. He had a hard time listening to my answers to his questions and never seemed to look at me. I asked him what he does, and he said he loves tennis and teaches it when he can get the work. He does some landscape work, too. When he told me he's 29, I asked him where he had gone to college. He said he'd gone to Mitchell College in New London, CT, and Beacon College in Florida. He told me school had been hard for him because he learns differently.
Mitchell is a school we are looking at for Reilly because it's good for kids with special needs, and has a major Reilly is interested in. One of Reilly's high school friends goes to Beacon. I told Evan about Reilly and that he has ASD, and was not surprised when Evan excitedly told me he does, too.
He was off and running, telling me all about his life. He went to a boarding school for special needs kids. He was majoring in sports management at Mitchell (the degree Reilly wants), but the math and business skills were too hard, so he switched to liberal arts. He lives at home with his Mom and wants his own apartment, but it's too expensive. He gets Social Security benefits, but loses the supplemental income when he makes too much money. He has a job coach provided by the state, but it's hard to get more than menial work. He drives now, but it was really hard to learn, and he's not sure he's a very good driver still.
None of the other people in the group, who knew Evan through various tennis clubs, seemed to know any of the things he told me. They just thought he was a bit odd. For his part, Evan seemed grateful for a sympathetic ear. Listening to him gave me a peek at Reilly in 10 years.
Evan showed up for the tennis the next day. I spent the day relaxing in the park on the Long Island Island Sound, until Rick turned up.
Rick arrived a little late for the tennis, but was going to be part of the sailing on the schedule after tennis. We shared a picnic table near the tennis courts and chatted while the games were going on. I soon learned that he's a neuroscientist engaged in autism research at Columbia University. His team studies how and why the brains of people with ASD operate differently from those of “typicals.” He explained a lot about neurons and “tuning,” and theories that might explain some autistic behaviors and learning differences. I was fascinated, listening to him clinically describe Reilly's life. I wanted to take notes, but I had accidentally left my iPad at home the day before. What he said was—and I know I won't get this exactly right—ASD brains are tuned very narrowly, making them better at detail work, but difficult to make generalizations and inferences. Stuff we really know if we live with someone on the spectrum, but Rick's looking at the science of it, in hopes of finding better therapies.
Vicki and I opted to go find some lunch while the group went off for sailing. But Rick was driving back to the city later that afternoon and offered Vicki and me a ride. She crawled into the back seat and napped, worn out from an unusual weekend of sports. Rick and I talked all the way back to Manhattan. Then he joined Vicki and me for dinner at a restaurant near her apartment. I'm sure we bored poor Vic. Rick gave me his card and said I should come up to Columbia when I have a chance and he'll show me what they're doing. I hope to take him up on the offer soon.
I met Reilly at Grand Central the next afternoon, and we took a cab to Penn Station and got on an Amtrak train for home. Reilly slept and I started writing this column in my head.
Autism stalks me. It's everywhere, even on weekend getaways to Connecticut.
As promised, I took Cameron job hunting last week. My, how things have changed! I naively thought that applying for work at fast food restaurants was much the same as it was for me when I was in high school. Back then, applicants filled out applications and were often given an interview and a job offer on the spot. Thus, I took Cameron door to door and prompted him to request an application. Each request was countered with a website address. I was left slapping my forehead. Of course everything is online! Why didn’t I think of that? I realized one could apply online, but I didn’t realize it was the only way to apply. Instead of filling out applications, Cameron left copies of his resume, and the search moved to cyberspace.
Even the information gathered via the application process is different than in my day. In addition to the typical job and education history, there is a personality assessment test that must be completed. Cameron was applying at four locations, so the process was done four times. The first application we completed together. The assessment test consisted of approximately 80 questions, many of which were very similar. For this application, I read the questions to Cameron and marked his responses as he made them. He quickly became frustrated, as many of the questions are very similar. I made a few suggestions when I felt the answer didn’t reflect Cameron’s personality, but for the most part, I stuck with Cameron’s initial answers. The first application took almost an hour to complete. And there were three more to go! For each application, there was a website registration process, the personal history data entry, and the assessment test. It was tedious, to say the least.
As I went through the next three applications, I stopped asking for Cameron’s involvement. It was all I could do to get him to sit through the first application. Now mind you, I really, really try to get Cameron to do things himself and would’ve loved to have had him complete the applications on his own. I felt somewhat guilty and a bit like an overprotective mother hen to be the one answering the questions on Cameron’s behalf. But had Cameron been left to his own devices to complete the process, I doubt he would’ve been able to complete one application, much less four.
This process has further opened my eyes to difficulties workers with disabilities face when seeking employment. For someone with learning disabilities, completing a personality assessment may end in results that are no reflection of the individual whatsoever. Among the many skills needed to complete an application one needs reading skills, comprehension skills, concentration, and stamina to just make it to the end of the personality assessment. And the job the individual is applying for may require none of the above! I became totally frustrated by this online application process. I felt that somewhere, in some cyber cloud, some data analytic software would automatically weed Cameron and others like him out of the candidate pool. On the other hand, if the hiring manager were to meet Cameron in person, he or she would be able to assess Cameron’s enthusiastic approach to work and get a sense for him in a way that no computer program could replicate.
Cameron’s four applications have resulted in one interview so far. Cameron went to the interview on his own, and came out pleased with himself. I phoned the manager afterwards, and explained my willingness to support Cameron in any way needed, and offered to be first point of contact if any issues arise. I stressed how much Cameron loves to work and how reliable and punctual he is. Maybe this was a step too far on my part, but I want to support Cameron and his employer and help them have a successful relationship. Cameron may not get job experience this summer, but he’s getting job search experience. Experience is good, regardless of its nature. It’s all about learning, and it’s all good.
One of the biggest days of my life is almost here! Next week I can finally say I’m an author. My first book “Defining Autism From The Heart” based on my life with autism comes out on Monday. As a kid I could never have imagined this happening. For years I truly struggled with reading, comprehension, and writing. In high school I was able to turn my academics around and this laid the foundation for where I am now. Improving my ability to communicate was essential, but there was also another event that was pivotal to me making this announcement today.
Six years ago, I won a $1,000 scholarship from the Autism Society of America (ASA) for college. I went to the annual ASA conference in Arizona that year to receive the scholarship. While there I realized how being a self-advocate could lead to the opportunity to make a difference for so many people with autism. The book idea came to me when I was walking around the exhibit hall. There had to be a few hundred books about autism. After skimming through a few I realized that none of the books were about attending college with autism.
Seeing that bothered me. Of all books in that hall THAT was a book I wished was there. That would have been the one book that would have made me believe I could be successful in college. It was then I decided to commit a part of my college journey writing about my experiences to help the future generation by writing. That was the beginning of my self-advocacy and my writing.
Even though the college book is still a few years away I’m happy how that experience impacted me. I’ve been able to start my own blog, write a column here at Autism After 16 for over a year and also write for many other sites like Thinking Person’s Guide to Autism, Love That Max, The SF Gate, Autism Speaks and the Autism Society of America.
These experiences have shaped me and helped me improve my abilities to make a book possible. Now at 25 with this book complete, I’m already looking towards the future. While talking to an autism advocate a few months ago I mentioned that in a perfect world I’d like to contribute to 30 books by 30 years of age. A lofty expectation. I always seem to come back to that number now in my writing. I’d love to write that much if I had the content to back it up.
To get there I’m going back to what I learned in high school and through some of my strongest passions like basketball and theater. To get to the next level you have to be willing to push yourself towards your goals and be able to understand what’s going on around you. This means reflecting and understanding what I need to improve on. As I continue to write I hope to take more writing courses to build my technique into writing better stories. I see much of the writing I do now as conversational and I’d like to improve on painting a picture to an audience through storytelling.
If all goes well I hope this one book in time will turn into several to help spread awareness for autism. The goal will always be to help individuals be educated on autism in our society. The biggest day in my life hopefully will be repeated in the days and years ahead!
I stared out the window into the super moon-lit night, trying to keep my eyes open. My husband Jonathan was in the driver’s seat, and we were in the middle of the two-hour ride home from a “Carry On, Warrior” book signing in Nashville. Since my friends couldn’t attend, I’d planned to go alone—I love the book that much. But then Jonathan said, “Why don’t I come with you?” I knew he wouldn’t be “into” the book signing—too many women, too much shrieking—but I also knew that the trip would be more fun with him along. And he didn't want me to drive all that way alone. He didn't say that, but I could sense it even so. My husband is quietly but fiercely protective, and he expresses affection through acts of service. So when he suggested accompanying me, I heard it for what it was: an offering of love.
So when I started feeling guilty about the trip, I reminded myself that Jonathan had offered to go. I also reminded myself that there are no Indian restaurants within an hour of our small town. So, I started referring to the trip not as “my chance to meet Glennon Melton,” but as “our chance to eat Indian food.” This proved an effective approach.
As we passed the “Welcome to Alabama” sign, Jonathan asked me, “Do you remember the big shift from three-letter state abbreviations to two-letter ones?”
“Nope,” I said, “That was before my time.”
“You’re probably right,” he acknowledged. “I think I was in first grade …”
“ … Which means that I was in diapers,” I finished. “But I could sing you all the state’s names in alphabetical order. And name all the state capitals, too.”
Growing up, road trips with my family meant memorization games, which Willie and I both loved. Our parents would challenge us to recall each of the state capitals. “Minnesota,” Mom would say, and we’d strive to be the first to respond, “St. Paul.” So competitive was I that I didn’t even learn proper pronunciation; our family still jokes about the time I was given, “Iowa,” as a young girl and responded, “Dess Moanies” without missing a beat.
All this flashed through my mind in seconds. And then I remembered something else. I said,
“Have I ever told you about the Animaniacs song, the one with all the countries in the world? Willie loved that song. And this was before Google, so we couldn’t just look up the lyrics, you know? So this is what my Dad did … ” I paused for dramatic effect. “He sat down with Willie and watched and rewound the video tape about a million times, and he wrote out all the countries of the world by hand. I mean … can you imagine?” If I closed my eyes, I could just see it: our six-foot-plus father, sitting with Willie in front of a children’s cartoon, jotting down one country at a time on white-lined paper.
Our father did what so many parents do every day: he went to work to earn money for all the things we, his beloved kids, would inevitably take for granted. My father owns his own business and has flexible hours, but he’s always worked hard. And even so, he rose at 5:00 a.m. and made me Eggo waffles and helped me wrap my ponytail holder extra tight so that my hair wouldn’t get in the way when I did spins and jumps at figure-skating practice. After a long day of driving around and serving customers, he sat with Willie and wrote down all those countries, in a list that was at least seven pages long. Willie didn’t ask him to do that. Nobody did. Dad just did it because he knew it would make his one, autistic son happy. That was a good enough reason.
That long list of countries, this long day of driving … on the surface, these might seem like small, ordinary things. But as we neared home that night, it became clear that they were anything but. I could see love right in front of me, and it was luminous as the moon.
I have made some new friends. As I have mentioned in the past, I am a member of an adult social group that an agency that I am involved with runs, and I met two people that are around my age at the last group meeting.
The theme of the meeting was “Game Night”—meaning everyone brought games they wanted to play with the other group members. It gave us all a chance to be in small groups and converse. I brought quite a few of my own games which seemed to be very popular with most of the group. While other group members began competitive games of Trouble, Connect Four, Clue, and Tic-Tac-Toe, I settled into a corner where someone I hadn’t met before was setting up a card game. His game looked interesting to me so I ventured over, asked if I could join him, and took a seat. A third group member came over to play as well. Introductions were made and then we started playing.
The game itself seemed very fun to me, although to be quite honest I did not understand it very well at first. My new friends graciously explained to me how the game worked as we played, showing me what each card did and how I could play effectively. I held up fairly well thanks to their help, but it did take me some time to catch onto a useful and successful strategy. I felt like a sitting duck at times, and I was convinced that they could have easily ended my time in the game if they had attacked me with their cards, but they chose not to, allowing me to continue playing and learn more about the game. I thought that was very kind of them, and I appreciated that they were looking out for me. In the end, we all had a lot of fun together, and I learned about something new and entertaining.
As the evening ended and we cleaned up the game, I thanked my fellow players for the fun time. They then informed me that a local comic book store offered tournaments featuring the game for beginners and invited me to come and learn more about how the game is played. This is something that I am very interested in doing and will be checking it out. If I see my new friends there, I will be sure to say hello and, if there is a spot available, play a match with them.
Making new friends is not always an easy thing for me to do. I have a best friend and we have a great time together. I also have many cousins that I have a blast with, but I do not always connect with others and their interests and vice versa. I seem to make friends more easily when we have similar interests and we both like to talk about these similar interests. I was delighted at how easy it was for me to introduce myself and connect with two people that were virtual strangers to me. I usually need to have someone introduce me to people—usually my parents—and get to know them over time. I think it helped that we were playing a game because I enjoy playing games and it put me at ease. Games enable me to bond with people over a shared experience and learn some new things about each other as we are playing. They provide for me a level playing field for communication, and I can speak with fellow players without feeling completely alienated. I came to identify with my two new friends in just this way at the meeting, a simple connection without preconceived notions. I cannot see how it could get any better than that.
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.
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 ...
With April being Autism Awareness Month, everyone is getting into the spirit of helping out when it come to this cause.
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