Chicken Soup for the Soul: Children with Special Needs Page 7

  In his official little green jacket, he was proudly welcomed at supermarkets, church, and restaurants. More often than not, outings to socialize Arbor were very successful. Once or twice, our cheeks burning, we cleaned up after an unfortunate miscalculation of his need to relieve himself. And Arbor grew, and grew, and grew.

  By the age of one year, he was well over eighty pounds. And just a few months later, we received word that Arbor had been recalled to Guide Dogs for formal training. When we dropped off our gentle giant at the facility, I thought I heard someone mutter, “Sheesh . . . the Schmaltz family is here.” It was true. We were bawling. Even my stoic husband shed a few tears. So now our job was to wait.

  Every few weeks, we received a new report of how Arbor was progressing during the ten-phase, four-to-six-month training program. As he neared phase eight, I let myself start thinking that he might really do it. He might just graduate! Jonathan was now allowed to pack and arrive at Guide Dogs for his one-month training program. Throughout the month, from 6:00 AM to 6:00 PM, Jonathan and Arbor, who had been matched together based on personality type and need, worked on becoming an unstoppable team.

  Twenty-eight days after Jonathan arrived at Guide Dogs, he and I met for the first time, right before the graduation ceremony. Immediately, I sensed why they had been paired. Jonathan, too, was a gentle giant. We had the honor of formally presenting Arbor to Jonathan at the ceremony. Afterward, we said good-bye. The car ride home was a solemn one. We knew that, very likely, we wouldn’t see Arbor again.

  The very next evening, I received an e-mail from Jonathan’s mother, letting me know that the flight went well and they were back in Kansas. “Jonathan took Arbor on a walk to see his friend, and I realized something,” she wrote. “He hadn’t felt the confidence to walk to his friend’s house in years.”

  In just twenty-four hours, Arbor had already started changing Jonathan’s life. And since then, those two have done more than most sighted people ever do. They’ve hiked the Oregon Trail all the way to the Pacific Ocean. They’ve gone deep-sea fishing off the Florida Keys. And they always send me e-mails and postcards. Last year, I received the family’s Christmas card with Arbor’s name included in the imprint. Since that first e-mail from Jonathan’s mother, I haven’t felt any tinge of loss. Only gain. And, by the way, we’re now raising our fifth guide-dog puppy.

  Suzanne Woods Fisher

  Suzanne Woods Fisher is an author, a wife and mother, and a puppy raiser for Guide Dogs for the Blind. The best thing about being a writer, she feels, is that everything in life ends up being material. It’s all grit for the oyster. Check out her website at www.suzannewoodsfisher.com.

  Reprinted by permission of Off the Mark and Mark Parisi. © 2006 Mark Parisi.

  The Gift

  I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.

  Edward Everett Hale

  Battered crutches leaning in the corner, Fatuma sits, head down, eyes averted. Sixteen years old, she lost her leg above the knee to a land mine a year ago in Somalia, and is now in the refugee clinic. In her culture, because of her amputation, she has become family baggage, and her father stays in the waiting room, ashamed, as her twelve-year-old sister happily translates.

  The medical student hadn’t asked why she did not wear a prosthesis, so as the teaching physician in the clinic, I accompany him back to the room to fill in the holes in her story.

  Eyes remain downturned; hope has gone from the room. Her prosthesis was lost in their flight from Somalia and never fit well.

  There is a national organization for amputees, the Amputee Coalition of America (ACA). Perhaps she would benefit from speaking with them, I suggest.

  The prosthesis was painful, she replies, words barely murmured. She has yet to walk again, yet to make eye contact in the room, and clearly feels herself a burden. She is ashamed.

  How much of our own story is appropriate to share with our patients? In Western medicine, the line seems very clear, separating patient and physician. We teach and are taught that as physicians we are there for the patient, and our stories can get in the way of theirs.

  But for the first time with a patient, I consciously step across the line between physician and patient. Raising the leg of my pants reveals the titanium of my prosthetic ankles, for both of my legs have been amputated below the knees due to an accident six years prior.

  There is a burst of words in excited Somali between the sisters.

  “But you are the doctor. How can you have artificial legs?”

  The message translates beyond any words that I had tried to offer.

  Hope enters the room as the disbelieving father is brought in. Now the offer to connect them with the ACA is heard. There is a round of stories, handshakes, and thanks, now accompanied by smiles and laughter. I leave the family with the medical resident.

  Later, as the story is replayed with our clinic’s psychologist, my eyes fill with tears. Though my life is full and blessed, it is not every day that I can see my prostheses as gifts.

  Perhaps there are times when it is appropriate to offer our stories to our patients. Today, as I look back on the visit, it is clear that this encounter was not just a gift to my patient, but one to me, too. Revealing my story that day was healing for both patient and physician.

  Thank you, Fatuma.

  Jeffrey J. Cain, M.D.

  [POSTSCRIPT: Two years later, another medical student came to review the case of an eighteen-year-old amputee from Somalia. Returning to the room, we found a smiling Fatuma, who now speaks English, goes to school, and wears a prosthesis. Now quite animated, Fatuma was still struggling a bit with her prosthetic fit and other war wounds, but she clearly has new energy and a joy for life. ]

  Dr. Jeffrey J. Cain is a family physician in Denver, Colorado, where he serves as chief of Family Medicine at the Children’s Hospital. Dr. Cain has bilateral below-knee amputations since an accident a decade ago. Dr. Cain enjoys bicycling, flying, teaching medical residents, and adaptive skiing. He can be reached at cain. jeffrey@tchden.org.

  I Won’t Do It

  Like many kids with autism, Byron has a hard time believing things that are seemingly illogical or abstract. Religion, in general, is a difficult concept for him to understand and study because it asks him to have faith in things he can’t use his senses to confirm.

  “Mom,” he whispered to me on Easter morning, “you do realize that people don’t come back from the dead?”

  “Yes, you’re right, but Jesus was special. He was God’s son. You just have to believe he rose from the dead and know in your heart it’s true,” was my answer.

  He quickly replied, “But, Mom, you know, your heart is just a muscle.”

  Hmmmm, okay . . .

  One morning after his Sunday school class, his teacher came to me with the news that Byron had been acting out during the lesson and said some totally inappropriate things. This wasn’t the first time he had behaved in such a way, but my husband and I decided that instead of the usual punishment of no computer or television or video games, we would try a new tactic. We told him he needed to talk to God a little more, so it would be his job to say our family’s grace at the dinner table for the next week.

  You would have thought we were torturing him with instruments from the Inquisition! He spent the rest of the day informing me and everyone else that there was no way he would talk to God.

  “You can’t make me say grace” became the mantra of the afternoon. “I won’t do it,” he would mutter under his breath every few minutes. “Mom, that’s not fair” was shouted out at regular intervals.

  As luck would have it, my in-laws were visiting, and we had planned a dinner that just happened to be one of Byron’s favorites. The smell of ham, au gratin potatoes, and crescent rolls in the oven had all of us anticipating the food, but not necessarily the moments that would precede our meal. Soon, I announced that everything was almost ready, s
o it was time to wash up and sit down.

  Byron stomped into the dining room and sat slouched in his seat while the rest of us found our chairs. It was with a sinking feeling that I asked Byron to bless our table.

  Nothing happened for a moment. Then another moment passed, and the hush stretched even longer. Just as I opened my mouth to speak, we heard a loud noise.

  “Bbbrrrrriiing!”

  Puzzled silence filled the room.

  “BBBbbbrrrriing!”

  This telephone like noise was coming from Byron, whose eyes were closed tight and whose face was scrunched up!

  “BBBBBBbbbrrrrrriiiing!”

  I peeked questioningly at my husband and my confused in-laws. Suddenly, Byron began speaking in a deep, formal, monotone voice.

  “Hello. You have reached God’s answering machine. He is not available to listen to your prayers right now, but leave a message, and he will get back to you later.” This was followed by a long pause.

  “BEEP.”

  “BEEP.”

  “BEEEEEEEEP.”

  Another moment of silence filled the room as I saw my mother-in-law’s shoulders begin to shake with silent laughter and my husband’s eyes roll toward the ceiling.

  “God,” said Byron, “bless all this food, and bless my family, too. Amen and good-bye.”

  He quickly opened his eyes and looked up at me. “Mom,” he said, “I didn’t talk to God.”

  We looked at each other for a moment. I saw that he was looking less angry and a little wary, but definitely relieved to have this moment over.

  “I’m sure he’ll get the message,” I said, “and maybe you can catch him tomorrow.”

  “Okay,” he said, glad to finally proceed with eating.

  Before bed that night, I let him know that God would be there for him whenever he was ready to talk. The rest of the week, Byron’s graces were wonderfully reflective and inspiring, as well as thankful and semiconventional! Byron might not have been ready to talk to God on that Sunday evening, but hopefully he knew God would get the message and appreciate that some kids need a little extra time and understanding when it comes to prayer and all the mysteries of faith.

  Nanette Whitman-Holmes

  Nanette Whitman-Holmes is a graduate of the University of Utah. She is a stay-at-home mother to her three sons, keeps busy with volunteer work, and plans to continue writing for pleasure. Her husband’s career with the U.S. government brought the family to Concord, New Hampshire, in 2001. Byron is a fifth-grader who enjoys reading, computer art and graphics, and classic cartoons. His frequent pithy comments and quirky sense of humor keep life interesting for the whole family! E-mail them at 5holmes@comcast.net.

  Out of the Mouths of Babes

  My cousin worked as a secretary at my son Brent’s old elementary school. She would fill me in on how Brent behaved at school when I would come to pick him up in the evenings.

  One day, she told me Brent got into trouble for talking during silent lunch. As Brent and I were walking to the car, I thought I would check to see if he would be honest enough to tell me what had happened. I said, “Brent, how was your day?”

  “Okay,” he said.

  “Did you get into trouble?”

  “No . . . umm . . . let me think . . . yes.”

  “Well, what happened?”

  “Umm, we were in the cafeteria, and there were these kids at the far table near the stage. They were talking and being really loud and disrespectful, and I was one of them.”

  Jimmy Hinkley

  Jimmy Hinkley, a para-educator for Pulaski County, Virginia schools, has dedicated his life to working with children with disabilities and finding new ways to teach those who learn differently. He’s certified for sign language interpreting, and an active volunteer and mentor to children in the community. Brent was diagnosed with Asperger’s syndrome in fourth grade. He is now a thirteen-year-old honor-roll student in seventh grade, and enjoys wrestling, swimming, computers, and video games. Jimmy can be reached at jimmyhinkley@hotmail.com.

  “I know the difference between right and wrong.

  It’s the similarities that mix me up.”

  Reprinted by permission of Patrick Hardin and Cartoon Resources. ©2005 Cartoon Resources.

  McBuns!

  I not only use all the brains that I have, but all that I can borrow.

  Woodrow Wilson

  The sign read: All children must wear socks while playing in McDonald’s Playland. If you do not have socks, you can purchase a pair at the register.

  My daughter, Hollie, who has autism, is pretty strong-willed about not wearing socks. But we were with our friends, and they wanted to be sure to follow the rules. They chose to go to Kmart instead of buying the overpriced socks at McDonald’s. I chose to carry my kicking and screaming five-year-old out the door. I got her back in the car with little resistance and drove home, explaining all the way why we needed socks. “We can’t play in McDonald’s without socks. It’s a rule. You must wear your socks.” Maybe I could pound it into her head by the time we got back. I explained to my other daughter, Taryn, that even if Hollie takes her socks off, she (Taryn) must leave hers on. “We need to teach Hollie that these are the rules. Please, please help Mommy do this,” I begged.

  We arrived back at McDonald’s, and Hollie tried at once to take off her socks. “No socks, no play,” I stated firmly. She left on her socks. She entered the Playland with a huge grin on her face, climbing up and through the tunnels, and when she got to the net tunnel in the far corner, she proceeded to remove her socks and shove them down the net.

  “Hmph!” I imagined her saying, as she seemed quite satisfied that she had won this battle. After stripping off her socks, Hollie exited the Playland. We hadn’t had a chance to order any of our meals yet, so Hollie proceeded to find random French fries at different tables. I apologized repeatedly to puzzled parents as they watched my daughter dancing around the room, eating fries, and smiling. When we were close to the door, I shouted out our order. A baffled employee returned promptly with Hollie’s favorite four-piece Chicken McNuggets with fries. I took the meal back to the table and began to set it up—nuggets on one side of the container, fries on the other, and ketchup with the fries.

  Just then I heard someone say, “Ma’am, your daughter is sitting at someone else’s table eating their meal!” I looked over and saw a young father politely removing his child’s drink from Hollie’s lips.

  I ran over to nab Hollie, and we finally got situated with our own meal at our own table. My friend watched Hollie as I got the rest of our meals. Things were finally going smoothly. Just then, Mrs. Prout, Hollie’s future kindergarten teacher, came to the table to say hi. She had recognized Hollie running around and wanted to greet her. I was tickled, but Hollie was unaffected by this show of affection. Mrs. Prout soon moved on to her own table.

  After the kids ate, they all went back to the Playland. I watched with great pride as Hollie played right along with the other children.

  And then, in an instant, I could see that things were about to take a turn for the worse. I watched Hollie through the Plexiglas high above my head as she removed her shirt. I shouted, “HOLLIE, NO GET NAKED!” and then I heard Taryn say, “Oh, boy, she’s getting naked!” A parent behind me let out a laugh. When I turned to look, she said, “Don’t worry, honey, we’ve all been there before!” Hollie turned to face me with a smile, bunched up her shirt, and shoved it through the tennis-ball-sized hole in the yellow octagon dome. My friend caught the shirt, tossed it to me, and said, “Now she’s removing her shorts.” Again, Hollie shoved her shorts through the hole, and they fell right into my friend’s hands. She tossed them to me as well.

  I scanned the room, and all eyes were on Hollie. Parents, children, and even her future kindergarten teacher were looking up to see just how far this junior exhibitionist would go. As she removed her underpants, I began to feel mortified. How am I going to get her down? My friend caught the undies and tossed them to me. We s
earched for our other children to go up and get Hollie, but we couldn’t find them. My dear friend headed up the climber, and as she rose to this occasion, I yelled, “Just say, ‘Let’s go potty’!” Then I came back out within viewing distance to find Hollie not there! A parent pointed to the net tunnel and said, “She’s up there!” A few minutes later, Hollie came down on the green slide with a huge smile on her face.

  “Let’s go potty!” I said, grabbing her hand and pulling her to privacy. After the excitement had settled, I wandered over to Mrs. Prout’s table to see just what this future kindergarten teacher thought of her new student. She offered up an explanation, “I guess she got hot!”

  I replied, “And they were worried about her keeping her socks on!”

  Trisha Kay Kayden

  Trisha Kayden is a mother of two very active daughters. Her oldest child has autism. Trisha devotes much of her time to helping her daughter. Today, at the age of seven, Hollie enjoys being fully included in first grade. She loves swimming, gymnastics, and Brownie Girl Scouts. Ironically, she does not like the newly remodeled McDonald’s Playland. Trisha enjoys spending time with her family, bike riding, camping, and reading. She is a strong advocate for families of children with disabilities. Please e-mail her at tkkayden@charter.net.

  Challenges

  It’s good to have money and the things money