Amanda Green
Amanda Green teaches reading at a public middle school in Harlem, focusing on at-risk and special-education students. She moved to New York City to pursue a teaching and writing career after graduating from the University of Texas at Austin with a bachelor of arts degree in English and a UTeach Liberal Arts teacher certification. Amanda enjoys reading, writing, photography, and exploring the East Coast. She welcomes all e-mail at
[email protected].
Out of the Mouths of Babes
My husband, my daughter, and I are all deaf. Our first house was accessible in the sense that we had flashing signal lights for our text-phones and doorbell. When our daughter was a toddler, she came to accept that every time the lights flashed, I would go to the phone to answer the calls. One day, we were driving to California in a thunderstorm. When bolts of lightning lit up the sky, my daughter quickly turned to me and said, “Mom, phone!”
Ava Crowell
Ava Crowell is currently an American Sign Language specialist. She received her master’s at Northern Arizona University in educational leadership in 1989 and bachelor of arts in social work at Gallaudet in 1982. She’s married to Tom, has two children, one of whom is deaf. She enjoys hiking and working in the deaf community.
Ace of Hearts
To the world you may be just one person, but to one person you may be the world.
Brandi Snyder
We had been going through an especially difficult time. My eight-year-old son, Eric, who has high-functioning autism, had been at a new school for over a year, but he was still having a hard time making friends, and being accepted at school and in the neighborhood.
I had been lobbying hard with administrators and the school board to get supports in place, and to get staff and peers educated about “differences.” But things just didn’t seem like they were coming together. As a parent, I felt very limited in my power to effect change in the system. Days and weeks and months had gone by with a lot of planning, strategizing, and attending difficult meetings. Uncounted hours had been spent identifying resources and laying them at the feet of educators. I had researched workshops and professional development opportunities and forwarded them to school staff, hoping they would agree to attend, but I would attend these events myself and not see a single familiar face.
Each day, I would watch my charming, affectionate, intelligent son run up to classmates and, albeit standing a little too close, greet them cheerfully. They would stiffen and turn away. “Mom, I just can’t seem to get to know those kids,” Eric would say, perplexed.
With these difficulties in the backdrop of our lives, Eric, and his younger sister, Sabrina, had recently become interested in card games. It was especially good for Eric, who has always had difficulty with freewheeling conversation, but thrives on structured interaction. Here we had hit upon something that provided the needed structure, showcased Eric’s math skills, and was fun for the whole family. We bought a book of card-game rules and proceeded to learn variations of rummy and whist.
One morning during this time when I was feeling most discouraged about my son’s social life, I was trying to get the kids up and out for school. This had been a particularly bad morning. No one got up before the third or fourth call. We couldn’t find the lunch boxes. The kids fought over breakfast cereal. The homework was not done. I was sleep-deprived and behind in my own freelance work projects. The house was a mess, and so was I. I was pretty much feeling like a failure in every quadrant of my life.
The kids were both talking to me at once, and they kept getting distracted from the morning routine. It was getting later and later, and nothing I said seemed to bring them to focus on their tasks. Finally, I blew a gasket. I had a full-blown “mommy tantrum.” I ranted and raved about how I just wanted us to feel successful about something! Getting to school on time was part of being successful. I raved about my frustrations with the school and the neighborhood, and how nothing seemed to be working. I went on about everything that was bugging me, whether or not it was related to getting out the door on time for school. Of course, I felt terrible afterward. What a way to set them up for a full day of learning!
Finally, we got out the door and were walking to school. After about a block of silence, I apologized and explained that I was just crabby and overwhelmed, and that my anger was about me, not them. After a few moments, Eric took my hand and said, in a voice that was crystal clear, earnest, and far more mature than his eight years: “I want to tell you something, Mommy. You are my highest trump card.”
You are my highest trump card!
Those of us with children who have autism have heard all the stereotypes: difficulty understanding metaphoric language, little or no ability to empathize with others, inability to grasp social nuance, poor if any comprehension of the big picture, and so on. “You are my highest trump card.” I have never heard sweeter words.
Three years have gone by and we have moved across the country. Continuing to educate people about differences has its highs and lows, and there are strengths and weaknesses in every school system. But no matter how unresponsive systems sometimes seem to be, I have come to understand the power of persistence and of focusing on a positive outcome. Most of all, I know that I have one superpower—love. And it will give me an unlimited supply of advocacy fuel for as long as needed. I have the Ace of Hearts up my sleeve.
Lynn Skotnitsky
Lynn Skotnitsky, M.A., F.M.B. is a client-centered coach and consultant with twenty years’ experience facilitating planning and development for individuals, organizations, and communities. She has volunteered on various nonprofit boards and is an advocate for diversity and inclusive education. Eric, whom experts said would likely never talk, is now in Grade 5 French Immersion, and makes public presentations, most recently at York University. An inclusive child-care center where Eric had early opportunities to develop social skills with peers made the most significant difference for his outcomes. Contact them at
[email protected] or 778-327-9641.
Labels
I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.
Jerry Newport
I used to be very caught up in labels: Calvin Klein, Gloria Vanderbilt, Izod. Sure, I was only twelve and brand-new to middle school, where I quickly learned I was pretty uncool without them. I eventually grew out of the need to dress to impress, but I found myself once again caught up in labels.
This time the labels were different and much more important: ASD, PDD-NOS, SID—autism spectrum disorder, pervasive developmental disorder not otherwise specified, sensory integration dysfunction. All these acronyms and words buzzed around the aura of my son. While we thought Jack had officially been diagnosed with autism, we got a surprise when his paperwork was transferred to his new elementary school for kindergarten. It turned out his evaluation actually said, “Jack demonstrates many characteristics consistent with autism.” He was never officially diagnosed with autism. The school wanted him reevaluated. They wanted to know his “label.”
When he was first evaluated, the team of experts placed him at “moderate to severe” on that spectrum. It was hard for us to fathom. My husband and I thought he was just a late talker; autism never entered our minds. But we pursued a number of alternative treatments, and we were lucky enough to have a team of ten therapists and teachers working with Jack through early intervention. He flourished and did much better than anyone had predicted. One of his teachers called it astonishing. But what should his diagnosis be?
I shouldn’t have worried so much about these labels. Surely, they didn’t change how I felt about Jack. Diagnose him with Sassy Mouth Syndrome, whatever. No matter what the doctors came up with, he’d still be the same little boy who loved playing trains and tormenting his sister, but also stood up to people he thought were hurting her. But some of that was just brave talk. While it didn’t bother me that a label could follow him his whole life, these labels did affe
ct what I felt I could expect from Jack.
While the rest of the world might not understand it, I think most parents with children with “special needs” realize that a label doesn’t define their child. It explains their child—the gifts they have and the help they need. It helps them understand why they struggle with certain challenges. So we were ready for whatever the experts were going to “label” our son. But it turned out to be a big surprise when the developmental pediatrician met with Jack. “I wouldn’t place him on the autistic spectrum,” she said after an hour interviewing our smiling little guy. We were shocked. She believes he has learning disabilities that have resulted in developmental delays. She did give him a diagnosis of mild Asperger’s syndrome, but she said he just barely met the criteria and could test out of it at the next evaluation. This diagnosis ensures he will receive the needed services at school. Asperger’s syndrome is traditionally listed as a disorder that falls on the autistic spectrum, but she is among the doctors who believe that Asperger’s should not be on the spectrum. She thinks it’s more of a learning disorder that Jack can outgrow or learn to overcome. She also said he has semantic pragmatic language disorder, which he can also outgrow or overcome.
This just shows that a label is a label, just like a rose is a rose. Another specialist could come up with a different diagnosis, or insist that Asperger’s is on the autistic spectrum. I really don’t care what the label says. He is and always will be my Jack. I think of it like a label on a shirt, offering directions to best take care of the child. And he will always have my own personal label attached to him: cherished son. Contents: 100 percent pure joy. Directions: love deeply on the gentle cycle.
Lisa Scott Macdonough
Lisa Scott is a TV news anchor in Buffalo, New York, and a freelance writer. Jack is flourishing in first grade in mainstream school without an aide and doesn’t even meet the criteria for special education. He does receive some supports, such as occupational therapy, physical therapy, and speech therapy. His parents expect him to live a full, happy life. Contact Lisa or read more of her work at ReadLisaScott.com. Lisa is working on a novel with a young character who has undiagnosed sensory processing disorder.
8
FOSTERING
INDEPENDENCE
There are some aspects of a person’s life that we have no right to compromise. We cannot negotiate the size of an institution. No one should live in one. We cannot debate who should get an inclusive education. Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must.
Lou Brown
Joey’s Gold Medal
Real power comes by empowering others.
Denis Waitley
In 1989, I had just graduated from high school, and it was my first summer working with the Special Olympics. I had volunteered that spring and was assigned as a trainer for a young man named Joey. Joey was eighteen years old, had Down syndrome, and was a delight to be with. Joey wore a perpetual smile and was quick to laugh and give a big thumbs-up to everyone he saw, peering at the world through his thick, Coke-bottle glasses, which he polished habitually. Standing just less than five feet tall, Joey was everyone’s friend. His race was the long quarter-mile run, the full lap around the track. I would stand at the finish line and call out as he rounded the final corner, “What are we going to do, Joey?”
“We’re gonna win!” he would shout back. We hit the track every Saturday for the six weeks preceding the race, and Joey’s time slowly improved until he was making the finish line in just less than three minutes. We would follow up our practice with a trip to the local burger joint, where Joey would tell the waitress, every week, that he couldn’t have French fries because he was in training. He was going to win a gold medal, and he wanted a salad.
As summer neared, the girls at the restaurant would all come over to ask him what his best time was and how practice went. They patted him on the back and wished him luck. Joey basked in their adoration. The day of the race finally came, and I picked up Joey in my van. His mother kissed him good-bye, telling him she would be there for the race. We loaded up his gym bag and drove to a local high school where the Olympics would be held. Joey was so wound up he could hardly sit in his seat, his hands drumming constantly on his knees, stopping only to polish and repolish his glasses. We arrived, parked, and signed in, getting our race assignment and number.
It was then, on our way to the sidelines, that I realized that something was wrong. “Joey,” I asked, “where are your glasses?”
Joey stared back at me, blinking owlishly. “I dunno . . .” I got Joey started on his stretching and went back to search the van. Top to bottom, end to end, no glasses. All I could think was that he must have set them on the dashboard, and they were blown out the open window. I walked back through the parking lot, but there was no sign of the missing glasses.
When I returned to the field, Joey had finished stretching and was jogging in place, keeping his legs warm. Knowing that Joey was nearly blind without his glasses, my heart was breaking as I sat him down on the bench. “Joey, I don’t know if you’re going to be able to race today,” I started. Joey was quiet as his chin began to tremble. “I just don’t think it’s safe,” I continued. “Without your glasses, you could get hurt.” His eyes began to fill.
“But we’re gonna win,” he said, his voice cracking. “I’m going to win a medal.”
I sat there for a moment, struggling with my own disappointment and Joey’s. Then a thought struck me. “Come with me, Joey.” We walked over to the track, and I stood him in his lane. I pointed to the white line on his right. “Can you see that line?”
Joey peered at his feet. “Yes.”
I pointed to the line on his left. “How about that one?”
“Yes.”
“Okay,” I said. “Now this is important, Joey. If you run today, you have to keep your eyes on those two lines. You have to watch very carefully, and not cross out of them. Can you do that?”
“Yes.”
Still unsure, but out of options, I led Joey back to the starting area. He walked haltingly, squinting his eyes, one hand slightly out in front of him. “Is Mom here?” he asked. I scanned the bleachers until I found her and waved. She waved back. “Yeah,” I said. “She’s up in the stands watching.” Joey waved in the wrong direction.
The other coaches and I got our runners into their lanes, and then headed toward the finish line to cheer them on. The starting gun fired, and they were off! Joey was doing well, holding steady in second place until they rounded the first corner. Another boy swerved from his lane into Joey’s, and Joey lost sight of his white line. I winced as I watched one sneakered foot catch the back of the opposite leg and send him sprawling onto the tarmac. Joey had fallen before, and he seemed okay this time. He scrambled to his feet and, pausing to squint at the track, he found his lines and started off again, limping slightly on his left foot. The rest of the boys had passed him, and he was about a quarter track behind. He ran doggedly, arms pumping at his sides, around the far corner and into the straightaway. Just as he was starting to gain on the last boy, his foot slipped again and he dropped to the track, rolling onto his side and groping blindly around him for balance. I groaned and started forward, but Joey rose to his knees again. He was crying now and almost started back the wrong way, but he turned at the direction of the pointing crowd. Now he was limping heavily, worn out, his arms hanging limply. Twenty feet from the finish line, he fell again. It was too much, and I was going to stop it, but as I stepped out onto the track to lead Joey to the sidelines, I felt a hand on my arm.
I turned to look and found Joey’s mother, tears in her eyes, standing beside me. “He’ll be okay,” she said. “Let him finish.” Then she stepped past me and walked over to stand next to the finish line. “Joey,” she called over the crowd. “It’s Mom. Can you hear me?” Joey’s sweaty, tearstained face came up, searching blindly through a sea of blurred faces. “Joey,” she c
alled, “come this way, honey.” I watched Joey rise to his feet for the third time. His palms and elbow were scraped, and blood trickled from his knees, but he began hobbling toward the finish line once more. “This way, Joey,” his mother called again, and Joey’s face broke like the sun through the clouds, a bright wide smile on his face, as he crossed the finish line and fell into his mother’s arms. As I ran toward them, through the roaring applause of the crowd, I could hear Joey telling his mother again and again, “I won, Mom! Did you see me win? I won!” Joey took home two gold medals that day, one for his race and one for best spirit. He earned them both.
Perry P. Perkins
Christian novelist Perry P. Perkins was born and raised in Oregon. Perry dedicates this story to the memory of Joey, who passed in 2001. Perry’s writing includes Just Past Oysterville, Shoal water Voices, and The Light at the End of the Tunnel. Perry is a student of the Jerry B. Jenkins Christian Writer’s Guild and a frequent contributor to the Chicken Soup for the Soul anthologies. Perry’s work can be found online at www.perryperkinsbooks.com.
A Simple Question
Any path is only a path, and there is no affront, to oneself or to others, in dropping it if that is what your heart tells you to do.
Carlos Castaneda, The Teachings of Don Juan
Our family had lived on the same friendly street for over seven years—our daughter Anna’s whole life. From the beginning, the neighborhood kids were sincere and open in their desire for information. Their questions about Anna were tough to hear at first, but I learned how to answer them. Books about disabilities provided the words for me; I used simple terms to explain complex realities like “cerebral palsy,” “vision impairment,” and the other challenges in Anna’s life. I considered myself a capable veteran in responding to questions like “Isn’t Anna too young to wear glasses?” “Why can’t she talk?” and “When she grows up, will she still need a wheelchair?”