Sheela, A Treasure in Progress
By Tom and Sherry Bushnell
Carefree and bright was an apt description of Sheela’s face this Sunday morning in the car. The window was open and she was lifting her face and hands to “catch the wind” as it blew into her face as we drove down the road. I was struck with the difference 4 years had made on her little life. In my wildest dreams I had never imagined life with Sheela could be so sweet. It is so fun, so full of life!
Sheela was born with anopthalmia (congenital absence of eyes) and is blind. She was born in Madras, India. When she was 21 months old she came home with kwashiorkor (protein deficiency), autistic tendencies….. and was basically unresponsive to stimuli. She had no reason to lift her head. Hugging the ground in a fetal position was her favorite way of sitting. She was not what we had expected. We had hoped for a sweet, charming, little girl, desperately wanting a mommy. Instead we got an angry imp with feeding problems. She as seemingly void of any wish to be loved!
Her first two years home were difficult. She manipulated us. She pitted Mom against Dad. She reached out to strangers for affection, only giving us bites and scratches. Slowly, through consistent love and discipline, Sheela found security and a family who would always love her, no matter how unlovely she was.
When Sheela was 3 ˝ we looked for services through the public school system. In our initial interview with the teachers, therapists, and other professionals, they felt they could offer Sheela a great program. But it was not what we had imagined for her. Our family had worked hard to help Sheela be a normal little girl. They did not understand. We knew that Sheela was capable of doing more then what they were prepared to give her. We wanted to start pre-braille immediately ( they didn’t start that until 8 ), we wanted cane travel immediately ( they wouldn’t start till age 10 ) and we wanted a regular preschool environment. We treat Sheela like a normal little girl, (who happens to be blind) and we expect everyone else to.
We decided to homeschool Sheela after talking with other parents home educating their special needs children. Sheela is now 5 ˝ years old. To give you an idea of how home schooling is going for us, here is a glimpse into our family journal.
Sept. 1993: Sheela and I made bread this morning. I tried hard to understand her excited chattering. What I got was, “Mommy, make bread from flowers from the garbage!” What???? As we worked together I finally pieced together what she was saying. “Flowers” was flour that we keep in a large plastic bin, similar size and shape to the garbage can! I was so excited to be able to be able to communicate with her. To finally reason and question her….. understanding each other’s thoughts is such a thrill. Sheela made her little loaf and placed it next to mine, covered head to toe with “flowers” she had a big smile on her face.
Oct. 1993: After a brisk jump on the trampoline, Sheela came in to play the piano. The rain had chased her inside. She was grumpy. She pounded out a few tunes, none of which I recognized. “Play something nice on the piano, Sheela,” I called from the office. She got down from the piano instead. She sat in the window seat, face pressed to the cool glass listening to the rain come down. “Sheela has to go potty,” I heard her say. “Well get down and go!” I urged her. She remained seated. “Go potty, Sheela!” (This time a command). She ambled toward the bathroom, trailing the counter and heading toward the toilet. We have been working on potty training for 2 years. She is doing great, with occasional lapses, still in diapers at night. It irritated me that she would resist her urge and chance that she would have an accident. I think her moodiness may have to do with her new sister’s arrival. Sherlynn came home from Pune, India. Sheela felt dethroned, cross, because now she is just one of the girls, instead of the sole princess, loved and admired by her doting brothers.
Nov. 1993: We started the Readiness to Read Program. Our first step has been symbol recognition, which she seems to learn readily. Circles, squares, and triangles made of cardboard are easy for her to sort and stack. Tracking and using push pins in her cork board seem to be a little harder. Her finger strength is weak. I am giving her peanuts in the shell to open and eat. She likes that! We are working on pouring beans. I use a cookie sheet and some of the bowls and measuring scoops she is used to from the kitchen.
We have advanced from dried beans to popcorn then to rice. Now she is pouring water with little spilling.
Dec. 1993: This month is the month of wonderful smells. I was inspired one afternoon to see just how many smells Sheela really knew. I was amazed. We spent the rest of the afternoon until dinner opening spice jars and talking about sweet, spicy, pungent, and yummy scents. She now knows all of the cooking spiced by heart. Later the week we moved onto cleaners, soaps, and other food items. Closing our eyes and sniffing the air we can identify smells we probably would never have noticed if Sheela hadn’t come into our world.
Jan. 1994: Sheela’s not fond of snow. She thought it sounded so fun. All the other children were wildly excited today as we watched the huge flakes drift down. Sheela came in from outside with tears in her eyes. “Sheela likes the snow!” she sobbed…..”but it’s too cold!” I felt for her in her disappointment. I guess most of snow’s excitement is visual. No sound appeal, no fun texture…..just cold. Her mittened hand was curled around her cane, frozen with the wet snow in globs. Cane travel in snow isn’t easy. The cane keeps getting stuck in drifts. It makes a funny “smuntch” sound when it hits the soft, covered ground and it gets in the way when snowmen are being built.
Feb. 1994: Sheela’s finger strength is visibly stronger. She can find the beginning of the raised line, push a pin in, track to the end and place another pin. This is progress. She can sing the ABC’s with relish and spell her name, but I’m afraid she is just copying the other boys. Some day soon she’ll understand. Her personal pronouns are still mixed up. She refers to herself as Sheela and doesn’t use I or me unless prompted to. This is difficult to explain to her. It even sounds confusing when I try to tell her the right way to say things. When shopping we are insisting Sheela use her cane and follow us. No more hanging onto the cart. She was hesitant at first, but with all the ruckus we make as a family going down the aisle she can’t help but find us. Her trouble starts when something interests her and she gets sidetracked…… Those oranges sure smell good. Mmmmm…..the self serve coffee bean section. I’ll have to admit the smell of fresh ground coffee beans are delicious.
Mar. 1994: After much astonishment, I came to realize that Sheela is capable of doing dishes and putting away her clothes. Josh, her older brother, was employing her services one evening as he had dish duty. She rinsed the dishes for him….. only putting some of the dishes right side up full of water. After a little more one-on-one she had the hang of it. She likes to wear my rubber gloves because there are “ickies” in the wash water. I can sympathize!
Learning to put her clothes away was a little more complicated. Daddy finally found a system. We put her clothes on the bottom stair and she sorts and puts them away in the right drawer. At first she stuffed the clothes all in one drawer. It took 3 weeks of coaching before it finally dawned on her that each thing had a special place in the dresser. The socks and shoes and tights in the top drawer. Pants, shirts, and sweaters in another and pajamas in the last. Now she does it right every time. She is now potty trained day and night.
June 1994: Our home school vacation/extended field trip to the ocean was a blast. The weather was cool and misty. We played in the sand with toys and listened to the waves roar. Sheela could run and run without bumping into anything. Starting with a slow jog, tentative… then speeding up, with a giant grin on her face running into the salty spray, twirling in circles, laughing, she would land in an out-of-breath heap at our feet. “Sheela’s running Mom!” It was so important to her. I had no idea she even wanted to.
July 1994: Sheela’s used Perkins’ Braille arrived. She spent several days making different combinations of bumps and lines to feel. She can read A, B, and C so far. At last I really think it is dawning on her that the song ABCD is more then just a funny rhyme. Sheela’s social skills are improving. She can now answer questions such as “How old are you?” “What is your name?” and “What did you have for dinner?”
She has acquired a sense of self worth and love for her family.
(Editor’s note: Update on Sheela March 2003: At age 14, Sheela has learned skills that have helped her become invaluable to our home. Where we are now is only a shadow of things to come, as we know she is working hard to improve in all areas. Sheela has 9 brothers and sisters now. She is the oldest daughter and as such has been able to lead in example and patient instruction her younger brothers and sisters in the chores she is proficient in. Take for example the dishes; no easy chore for a family so large. She is the most thorough and least likely to forget any details. ( Such as cleaning out the sink.)
What has blessed us the most, however, is Sheela’s stick-to-it abillity. Not one to quit, she has the tenacity of a mature adult. Grade level, Sheela is at about a 9 – 10 year old place. She is able to read 2nd grade Braille independently at a 3 year level. She enjoys reading her Braille Bible and other books that come across our path. She has never really grasped the concept of math beyond counting to about 10. We think that this is because she has set the table so many times! At least she does comprehend putting objects together and getting more.
Sheela’s favorite activities are: helping out where needed in the NATHHAN office and listening to hymns on her CD player. She earned the money for her player by doing laundry for her older brothers and Daddy $1.00 / load.) She also likes to jump on the trampoline outside, takes walks with her sisters outside to listen for robins, sparrows, crows, eagles and other wildlife.
A big help to mom is Sheela’s ability to care for her little sister Lynny who is now 10 years old. Lynny has cerebral palsy and autism. Sheela is able to bathe, help dress, and keep happy and occupied her sister. They have become very close. The ability to help others is important to anyone, but it has really been special for Sheela. Being blind is only a nuisance and not a tragedy for Sheela. Her cheerful smile and attitude is an example to us all.