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