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?”
But Alexa, an energetic eight-year-old neighbor girl, had asked a question that was of an entirely different sort. I sensed immediately that it would affect me for years to come, but I wasn’t sure exactly how. All I knew was that I wouldn’t find the answer to this one on my shelf of books on disabilities. Standing by Anna’s side, Alexa looked straight at me and said, “Bonnie, what does Anna get for her allowance?”
I tried to think of an acceptable response, but my silence gave me away. The truth was it had never occurred to me to give Anna an allowance! Alexa looked disapprovingly at me.
“Seven-year-old kids around here usually get a dollar a week,” she said evenly.
Anna squealed. Now both girls were watching me intently.
I had always answered children’s questions honestly, and I knew this was no time to do otherwise. “Alexa,” I began, “I probably didn’t think of it because Anna doesn’t really have chores, like other kids do.”
I felt sad, kneeled down, and stroked Anna’s small hands. Wide-eyed and smiling, she touched my face. As always, her patience and tenderness comforted me.
My love for my daughter was so strong that I would do anything for her. Instead of resuming my career after she was born, I spent my days at home with her, applying early-intervention strategies given to us by specialists and therapists assigned to our family. My husband and I desperately wanted to give her a good start at living with multiple disabilities. Time was of the essence.
Alexa’s question about allowance money stunned me because it had nothing to do with Anna’s special needs. Why would I use Anna’s valuable therapy time to think about something as ordinary as an allowance? Clearly, Alexa saw Anna’s life differently than I did. She exclaimed, “Anna does TOO do chores. She’s learning to carry her own dish to the table. She is trying to use her communication board to ask for things. She does exercises every single day!”
Anna was beaming as she listened to the unfolding drama.
How could I disagree? Alexa was so very right. Her insistence that Anna receive an allowance for doing her chores, just like the other kids, was opening my eyes as well as my heart. “Okay!” I said with a nod. “We’ll start today.”
Kelly, another young neighbor, peered in through the screen door to see what was going on. In no time, the door flew open, and the two girls ran off to look for something to hold Anna’s money, because, of course, a weekly allowance needs to be saved in a proper bank.
As Alexa and Kelly dashed out of the house and across the damp front lawn, a lovely breeze of spring air sailed into the living room. Anna’s gaze followed the girls, and I closed my eyes in gratitude for this moment of discovery we were sharing. I began to wonder, If I was feeling overwhelmed by all the special work Anna had to do, how was she feeling? And, on top of everything, without even an allowance to show for it!
Anna reached toward the doorway, so I wheeled her outside to wait for her friends. Alexa and Kelly soon reappeared with a can and lid, and a small notebook and pen. Alexa made a wide cut in the plastic lid so Anna could easily drop her coins into the slot. The notebook was to keep track of whether I remembered to pay Anna every single week.
Each Friday, the girls helped Anna perform the ritual in which she proudly put her very own allowance in her very own bank. Other exquisitely ordinary activities ensued, much to Anna’s enduring delight. The three girls counted allowance money together and entered sums carefully in the notebook. They examined magazines and catalogs for toys, and later, clothes, that Anna might want to buy. They cut out Anna’s chosen pictures and made lists of items to track down at the store.
Every year, the girls, now firmly established as Anna’s financial advisors, directed me to raise her allowance, and I happily complied. We would accompany Anna to the mall where the allowance money was exchanged for her choice of wondrous treasures, including a bright orange wallet with matching orange sunglasses, a jewelry box with a delicate ballerina on top, a glow-in-the-dark jump rope, and glittery pink ballet shoes.
As we all returned home from one shopping trip, I noticed the van was unusually silent. My check of the rearview mirror revealed troubled faces. “Hey, what’s wrong, everybody?” I asked. “Did we forget something?”
Kelly finally spoke up. “Bonnie, Anna does not have to buy educational games with her allowance.”
“You mean the Memory card game I put in the cart? I thought everybody liked it. Nobody said anything when we were in the store.”
“Yes,” Kelly said with a sigh, “Anna wants the game. But parents are supposed to buy those things, not kids.”
“Right again!” I answered, thrilled at the group’s objection. I reimbursed Anna on the spot.
The simple question that Alexa asked so many years ago about her neighbor friend opened wide the door to ordinary life for our daughter. I see in retrospect that it was a door in danger of sticking shut while my husband and I focused so heavily on Anna’s needs. Time truly was of the essence . . . time for the fleeting years of childhood.
Bonnie Mintun
Bonnie Mintun’s international reputation continues to grow. She has been welcomed as a keynote speaker and panelist to conferences and seminars on disability, education, and assistive technology. Her blend of personal experience, as the mother of a child with disabilities, and compelling research gained as a teacher, writer, and advocate combine to inspire, inform, and challenge her audiences. Bonnie’s daughter, Anna, is now a young adult, and lives in her own apartment with roommates who provide the full-time support she requires to live in her community. As part of her busy week, Anna volunteers at a local preschool, reciting poems and stories to children using her communication device. Bonnie lives in Davis, California, and may be contacted at [email protected].
Step by Step
Empower your child by giving him/her a choice and a chance. Let them learn to make their own decision, when appropriate, and learn to trust their feelings.
Doc Childre
“Mom, today is my day,” says my daughter. With her black T-shirt and tight jeans, Talia looks like any twelve-year-old—except for her preschooler-type shoes. She insists on wearing sneakers that flash a light each time she steps.
Today, for the first time, she’ll walk to school and home alone. For Talia, diagnosed with autism, it’s a milestone I thought she’d never reach. But Talia has worked hard to earn this freedom. Over the years, along with learning to speak, read, and use facial expressions, she’s memorized rules to keep her safe. “Three-step rule,” she reminds me in the grocery store. In a crowded place, she keeps within three steps of the adult she’s with.
But the three-step rule doesn’t help her navigate the complex customs of the social world. Out in public she often says hi to everyone she passes. Then she looks back at me to see whether she’s done the right thing. “Oops! Sorry, Mom,” she says. “Was that a stranger?”
Once, while we waited in line to pay the cashier at a store, Talia patted the arm of the woman standing in front of her. “You’re doing a great job waiting your turn,” my daughter told her. The woman turned to me and smiled. I blushed. Others are not as charmed by my daughter’s social eccentricities. They meet her comments with frowns and raised eyebrows. How do I protect her from that? So although she’s ready to journey to school alone, I’m not ready to let her go.
For years, I’
ve walked with her, acting as translator and bully protector. While Talia knows her safety rules, how can she protect herself from hurtful comments or being ignored?
I decide on a compromise. “I’ll walk you just to the corner so I can watch you cross our road. Then you can cross the other road with the crossing guard,” I tell her.
Her heavy backpack bulges with lunch, extra clothes, binders, and a pencil case. I start to sling it over my own shoulder.
“I can carry it,” she says. We walk together, and then from atop the hill I watch her race down the sidewalk and stop abruptly when she reaches the curb. Standing still, she slowly swivels her head left and then right several times before venturing across the street. All during the day I think about her: How did she do? Realizing we left the house too early, I wonder how she spent the ten minutes in the schoolyard before the bell rang. Did she have anyone to wait with? Did she wander?
At 3:00 PM, I hear the school bell from my house. After eight years of being in the schoolyard before and after classes, it feels strange not being there now. Again, I wait on the sidewalk at the corner near our house. As I wait, I marvel at how much she’s changed over the years. I remember her as a bewildered and unhappy four-year-old who communicated mostly by echoing phrases and crying. I remember endless car rides with Talia screaming “green, green” in the backseat every time we had to stop for a red light. I prayed the light would change quickly back to green. Anything, just so she’d stop wailing. And over the years, she has.
Soon, I see her striding up the hill alone. We meet and walk the final few minutes together.
“How was your day, Tal?” I ask her. No reply. At the table as she eats her afternoon snack (apple slices peeled to avoid the yucky skin), Talia is silent. Finally, she looks me in the eyes and says, “Mom, tomorrow, you need to stay in the house. Don’t walk me to the corner. I can do this myself.”
The next morning, she leaves alone.
“See you later, Mom,” she says.
I run upstairs to peer through the blinds in her bedroom window to watch her. Her backpack bouncing, she skips down the hill.
Of course, Talia still has autism. But somehow she’s emerged. She’s active and present in the world, rather than constantly battling it. She happily checks her wall calendar for adventures she’s looking forward to. “Only four more days til Emily’s slumber party,” she says.
It’s hard to measure in a standardized test how far she’s progressed. How would you score or categorize a child who brings me a tissue when my eyes well up? “It’s okay to be sad, Mom,” she says.
Like so many loving kids with autism, she defies the stereotype of being aloof and distant. I’m not sure why she’s changed. When she was younger, we read frantically about therapies, specialized diets, medications, and ABA (applied behavioral analysis), but few resources existed in our community. So we pieced together bits of activities and therapies we thought might help—speech therapy, occupational therapy, one-to-one playtime and teaching, nursery school, and day care.
Mostly we took her everywhere in the community so she could experience different social situations and learn how to navigate them. We hoped these outings would help her develop new interests, skills, and language. We visited summer and fall fairs, stores, movies, restaurants, the library, parties, temple, concerts, hiking trails, and the YMCA. When she’d start to scream or tantrum, we’d scoop her up and escape back home.
While I enjoy her now, I often think about the future. Where will she live? What will she do? Who will be there for her when we can’t be? My daughter, on the other hand, wisely lives in the present. Today Talia stands in the hallway and kisses me goodbye. “I’ll see you after school, Mom.”
I close the door. Though I really want to walk with her—at least to the corner—today I don’t. Neither do I race upstairs to peer through the window blinds to watch her. Instead, I sit down and pour myself a coffee. And my own day begins.
Amy Baskin
Amy Baskin, M.Ed., is the coauthor of More Than a Mom—Living a Full and Balanced Life When You Child Has Special Needs (Woodbine House). A mother of two teens, her youngest has autism. She writes and speaks about parenting for magazines, conferences, and organizations. See www.morethanamom.net or e-mail abaskin@ sentex.net for details. Talia is thrilled to be traveling to Quebec City this spring with her classmates. An avid animal lover, Talia enjoys young Naturalist and Humane Society (SPCA) clubs on the weekends. She hopes to work with aninals or to be a chef one day.
Independence Day
Strength does not come from physical capacity. It comes from an indomitable will.
Mahatma Gandhi
As a teacher, I have no favorites. But if I did, Jim would be one.
I met Jim when he was a sophomore in high school. As the inclusion facilitator for students with significant support needs, one of my first responsibilities was to teach Jim how to use his new electric wheelchair. Given the spasticity from cerebral palsy, the task would have been daunting enough, but Jim had another suspected agenda in learning to “drive”—his mother feared that he intended to do himself harm once he mastered it.
As with many families faced with living with a person with lifelong disabilities, Jim’s parents, overcome with the stresses that go with them, had separated two years earlier. Jim did not handle it well, perhaps sensing that some of the tension in the family was due to the attention necessarily paid to caring for his daily needs. As a result, he attempted at his previous school to rock his wheelchair close enough to the top of an embankment to throw himself down it. Fortunately, a teacher’s aide caught him, but he vowed to his rescuers that he would eventually accomplish his task. Regardless, we knew that if Jim was ever going to achieve any control in his life—any independence at all—which is the goal for all students, he would need to have the opportunity to move himself from one place to the next. So it was under this cloud of caution that we began his mobility training with an electric wheelchair.
Jim was motivated. From day one, his concentration in willing his contorted arms to even reach the joystick on his chair was at once both inspiring and excruciating. And while his speech was mostly unintelligible, when he was successful in getting the chair to move even slightly, it would be interrupted by his joyful expression—a loud, inhaling type of laughter that was infectious if not disruptive to everyone around him. This would cause him to have to start over, as his whole body convulsed with the laughter, but he would proudly do so, eventually containing himself long enough to make his chair inch forward.
Before long, Jim was navigating the halls. Eventually, he could access the elevator and his classes on the second floor. At first, we were obvious in monitoring his comings and goings, following him to classes and making sure that student assistants were aware that monitoring Jim was part of their responsibility. With the improvement of his ability to negotiate the halls came an improved demeanor as well; Jim seemed truly happy at last. The more proficient he became, the less we worried. Soon he was going from our resource room to his general-education classes unassisted, meeting his student assistant on arrival.
One day, Jim left our classroom and headed for the computer lab, where he was taking a modified keyboarding class. Shortly after the bell had rung, his teaching assistant came into the classroom with an innocent enough question.
“Is Jim out today?”
“No,” I replied, with more than a little apprehension. “Didn’t he meet you at the lab?”
“He never showed up for class.”
Immediately, we headed out in opposite directions, trying not to panic. I checked the main entrance stairs near the elevator, while the teaching assistant took the west stairs, and we met on the second floor near the lab. Where could he have gone? I realized that the office should probably be alerted, but I was anxious to find him, hoping against hope that we hadn’t misjudged his demeanor. I was just about to hit the call button in the nearest classroom when I heard a faint, unmistakable sound. It was the sound of
Jim’s inhaling laughter from quite a distance.
“Listen!” I motioned for the teaching assistant to go down one hall, while I went down the other. Because of the acoustics, it was impossible to tell from which direction the laughter had come; Jim was nowhere in sight. As I headed off down the hallway, it became obvious that I was getting closer. Near the end I found him, facing the door of an empty classroom. He had pulled into the doorway so that his chair had disappeared from sight. He had an unmistakably delighted look about him.
“Jim! What on Earth are you doing down here?”
My displeasure must have been evident, as Jim’s laughter immediately stopped. His face did not reflect fear, however; moreover, it was a look of complete indignation. Wild-eyed, his head moved back and forth as he strained his neck forward in an attempt to get the words in his heart to come out through his taut, nonresponsive diaphragm. After a prolonged struggle, he was able to squeeze out a three-syllable response.
Even when Jim was calm, he was nearly impossible to understand. In the months that we had gotten acquainted, I had become pretty adept at interpreting him, but in this instance, Jim had as much clarity as I have ever heard.
“I’m . . . skip . . . ping!”
Having feared the worst in his absence, I should have been relieved. Instead, I surprised myself by sticking to the standards I have set for all the students in my program.
“You’re skipping?! Skipping your computer class?”
Jim rocked violently back and forth in affirmation. Then he stared back up at me with that same defiant stare, his lower jaw protruding and trembling ever so slightly.
“Jim! Why on Earth would you skip your computer class?!”
Again, he struggled to communicate. His head slammed back into his headrest, mouth and eyes wide open, then lunged forward again as if he were trying to escape his chair. Steadying himself, he focused his face, reddened with emotion, on mine. He pushed the words out, past the tears that were welling in his eyes.
Chicken Soup for the Soul: Children with Special Needs Page 24
