Chicken Soup for the Soul: Children with Special Needs (34 page)

But Mom would. The contents of the tape would reveal me, at age five, faithfully reproducing the songs I’d learned in class, as well as some of my favorites. Later in the tape, I discussed the nuances of each class play station and cite which three kids were my best friends that day. Ha! My mom would show them.

Such banter would normally come as no surprise to anyone who works in an elementary school. The only thing odd about the situation is that my mom secretly did exactly that: she recorded a car trip home from kindergarten. Even that could be rationalized as a bored housewife’s attempt at posterity, or re-creating a
Columbo
episode.

The guidance counselor and my teacher were shocked and embarrassed at the revelation. The two women had jumped to conclusions about my intelligence and abilities too soon. Since September, I hadn’t spoken one sentence in school. In a silent shell, I followed every instruction, colored every picture, and always maintained order in the lunch line. Often, I smiled and laughed. I was just very shy and missed my little sister, my big-kid friends, and mostly, my mom. At school, everyone was convinced I couldn’t speak.

My teacher, Mrs. Gonzales, had been nice at first, but her few squats down at my desk while I colored weren’t enough to build a close, trusting relationship. I still didn’t feel comfortable enough to speak to her, and she began to put bright red bear cards in my pocket on the behavior chart. The chart was at the front of the class, and the red bear was the worst card you could get. It was reserved for kids who started fights and said bad words, or in my case, said nothing at all.

Eventually, Mrs. Gonzales started to slip the red bear card in my pocket early in the day and send me to the guidance counselor. A battery of tests ensued. I liked the hearing test, where I had to indicate my detection of the world’s faintest beeps. I felt clever when I learned my hearing was perfect. My second-favorite test involved picture puzzles. But the worst one was when the counselor would sit in front of me for what seemed like hours at a time, point at her nose, and ask, “Amanda, do you know what this is?”

Of course I did, but the guidance counselor, with her too-soft voice and liver spots, was particularly frightening to me. I began to wish Mrs. Gonzales still liked me. Then I could return to the play stations, the songs, and my classmates. But now she never smiled or even tried to have a conversation. Mrs. Gonzales had given up.

My mom apologized to my teacher each day when she picked me up, asserting that I really could be quite talkative at home. She said that she suspected I was bright. Perhaps I just liked observing the class. Mrs. Gonzales and the guidance counselor weren’t so sure. They announced they’d made up their minds that another year in kindergarten was the best thing for me. “Amanda is just not cognitively or emotionally ready for first grade,” they said.

The secret tape surfaced in
National Enquirer
fashion. Could the child’s voice be inauthentic? How could we have found out about this so late? The elementary school agreed to promote me to first grade, provided I was enrolled in the small English as a Second Language (ESL) class with Mrs. Edwards. My life was changed forever.

Mrs. Edwards never punished me for my shyness. Instead, she made me feel safe by providing personal attention, compassion, and warmth. She could hear what I wasn’t saying. Soon, I wanted to talk to Mrs. Edwards and anyone else who’d listen. She was the first person other than my parents who said, “I know you can do this,” when I attempted to read, write, add, jump rope, and more.

When I graduated from high school years later, I thanked Mrs. Edwards in my valedictory address. It was fortunate I hadn’t been held back a year. If I had, I might have been labeled a student to pass up, a student who wouldn’t amount to much anyway. Every child has needs—not all come with a label.

I strive to emulate Mrs. Edwards now that I’m a teacher by working under the idea that every student is unique and can be successful. Without a teacher like her, or cunning undercover detective work by my mom, where would I be? Probably booked long ago for a crime no one is ever guilty of—the inability to learn.

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
amanda.louise.gr
[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

T
o 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 affect 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.