Chicken Soup for the Soul: Children with Special Needs (36 page)

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

S
trength 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.