Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Editha Jones
From the Editor: A few months ago Editha Jones called me to request a Braille pen pal for her daughter Michelle through the Slate Pals program. The more we talked, the more I knew I wanted her to write about her family for Future Reflections. She graciously agreed to share her story, and here it is.
I live in a small town in Georgia. My husband and I have six children and four grandchildren. I grew up in a big city and had a number of health problems as well as limited vision. After graduating from a small-town college I married a man who shared my dream of adopting children with special needs.
My husband and I raised three birth children, and I was diagnosed with multiple sclerosis (MS). The MS weakened my right side and made it hard for me to walk. I began to use a wheelchair or a go-cart to get around on the street. MS never shook my desire to become an adoptive parent.
Finally our dream of adoption became a reality. The Lord has blessed us with three beautiful girls from India, each with multiple challenges. Marie has been with us nine years. Michelle has been with us seven years and Makaily four years.
Marie joined our family at the age of one year. Her grin could melt anyone's heart. She has craniofacial syndrome, a condition that caused her to be born with a cleft palate and a bifold nose. She is blind in one eye and has a ninety-five percent hearing loss in both ears.
Michelle joined our family close to her third birthday. Her gentle hugs could calm anyone. She is blind with light perception only, due to congenital glaucoma. When she came to us she was developmentally delayed. She was not talking and was thought to be deaf. She kept her clutched hands hidden in her clothes and was not yet walking. She had learned to be totally dependent on others and her mental abilities were unknown.
Makaily was three and a half when she joined our family. Her happy smile, full of giggles, can brighten the darkest moment of any day. When we brought her home we thought she had craniofacial syndrome like her sister, but she was later diagnosed with a rare condition called Fraser's syndrome. Fraser's syndrome caused her eyelids to be fused shut. She has malformations of her eyes, ears, nose, middle fingers, and right foot. There are also many other health issues related to this syndrome. Makaily could not see, hear, talk, walk, or use her hands to play normally. She was severely delayed and her future potential was uncertain. She was rated at the developmental stage of a newborn when she came home.
To outsiders, parenting children with multiple disabilities can appear to be overwhelming. By pulling your family, support system, and other resources together you can succeed as a parent, enjoy your children, and even have a few moments to relax!
The discovery that your new child is challenged in some way sparks many emotions. My experience caring for my children has taught me that with prayer, patience, and perseverance you can find peace and acceptance. You can come to see beyond the medical condition and find the joy of loving your child just as he/she is. Each family's story is different, but the emotions are the same whether the child is birthed or adopted.
We were very excited to meet each of our new children after months and/or years of waiting. From pictures we knew what their faces would look like. Yet, when we actually met each of our girls at last, I felt a mixture of emotions. Through my tears of joy I still experienced the feelings any new mom might have when holding a multiply challenged child for the first time.
The first time I held Makaily I needed to close my eyes until I was ready to look into the blank space where her eyes should have been. I had looked at her pictures many times before, but I still closed my eyes. When I opened them again I could see past her face to the pure, innocent, beautiful soul of my child within.
One-year-old Marie and three-year-old Michelle and Makaily lay in my arms as limp as newborns. They seemed so small, helpless, and scared. I had never dreamed about the time they would take their first steps or say their first words. I did not know if they would reach those milestones. But as I held them close and felt the warmth of their bodies, a feeling of peace and acceptance filled my heart. I made the connection to each of my new children. Each one was the child we had been waiting for, our blessing, our gift. I breathed a deep breath and uttered a prayer of thanks. We are now together. We are now a family. I never knew exactly how I would reach each deafblind child we brought home or what the future held, but I was determined to help my little girls meet their potential.
The parents of all adopted children must make adjustments, whether or not the children have additional issues. The adoption of toddlers brings a special set of concerns that are not present with other age groups. I found some very helpful books on adoption issues. WACAP, our adopting agency, was also supportive. With their help I felt confident as we entered into each of our adoptions.
The search for resources for our daughters was a painstaking, time-consuming process. In our small town there simply are no services for children with their disabilities. The big city four hours away has specialized services for the blind, the deafblind, and the physically disabled. But all of those wonderful programs are four hours away from us. We felt uncertain and alone, but I was prayerful and determined to find what we needed.
At first we got help for all three girls through an organization for the deafblind that gave us technical assistance. As the girls made progress we no longer needed this service. I found that the Hadley School for the Blind offered a correspondence course on raising children with multiple disabilities. That course gave me a lot of information and ideas. All three girls attended a pre-kindergarten for special-needs children through the public school.
We have involved our children in community, social, and sports events. Some of these activities are geared for the blind and/or disabled and others are designed for the general public. The girls are involved in church activities, family camping, summer camps, horseback riding, roller-skating, and school events. Each of the girls attends the local public school. The school has tried hard to meet their individual educational needs.
Today Marie reads lips, talks, cares for her own eye shell and hearing aids, attends regular fourth-grade classes using auditory trainers, and enjoys being an active ten-year-old. She loves to talk and does not consider herself disabled in any way.
Michelle uses her cane to travel independently throughout her school. She maintains an A average in a regular fourth-grade class. Due to weakness in her hands she had trouble learning to read and write Braille, but she wanted to learn even when others warned that it would be impossible. After playing the piano and learning to write with a Perkins Brailler she began to be able to read. She is still slow and tracking is hard for her, but with daily practice she is improving. Last month she read a simple Braille book to the preschool children at the local library for story hour. She enjoyed reading for the Braille Readers Are Leaders contest and likes to hear from her Slate Pals.
Last year we heard about the Talking Typer computer program for teaching keyboarding skills to blind children. After working on it all summer, Michelle types her notes and schoolwork on her laptop. She uses a talking calculator for math.
Michelle likes to roller-skate and sing, and she plays the piano by ear. She is active in church and sports. She enjoys soccer and basketball with the Challengers sports team in the next town. She sings with a girls' singing group for the local nursing home.
Michelle wants to be a special education teacher someday. Helen Keller is her hero. For a school assignment last week Michelle wrote a very persuasive paper entitled, "Why I Need My Own Cell Phone."
Makaily is walking now, and she is learning to use a cane. Developmentally she is at the level of a two-year-old. She uses a tactile communication device and attends a special-needs class at the public school.
"What did you do to get them to this point?" people often ask. Before the girls came home I began by refreshing my study of child development patterns. I chose to encourage the normal development patterns of a newborn, though my girls were toddlers. I made a chart of simple goals I wanted them to reach and broke each goal down into many ministeps. I set no timeline. I did not know if the girls would be five or fifteen before they reached each step.
It takes great patience to stay with a goal for months or years without any visible progress. Often I was swept with doubt, but I could not convince myself to stop trying. Each child blossoms at her own pace and within her own level of achievements.
Because the girls were all thought to be deafblind when they arrived home, we used dual signing and speech as our first form of communication. This was a challenge. I was trying to learn signs, Braille, and total communication skills all at the same time. At fifty years of age I did not learn as quickly as I thought I should, but I managed to stay one step ahead of the children. I spent the first two months at home to bond with each child. It gave us a chance to form family routines, understand the child's needs, and assess her potential. After the first two months I felt comfortable with my assessments and goals.
Next we undertook the many therapies and surgeries needed to improve the girls' physical conditions as much as possible. This is an ongoing process. The hospital knows us on a first-name basis. I still do not like doctor's visits, and I really enjoy the months when we only have to go two or three times.
Marie had several craniofacial surgeries and ear tubes were placed in her ears. Her hearing improved enough for her to use hearing aids. She began to sign by age three. By age five she was lip-reading and talking.
Michelle needed foot braces for her ankles and began walking by age four. After many hearing tests it was determined that her ears worked but her brain was not responding to the sounds she heard. I was determined to teach her how to hear. She seemed to respond best to songs. For a year I repeated the same songs over and over again, and finally she began singing them back to me. By age five she could say simple sentences on her own, but she still echoed much of the time.
Makaily needed many surgeries to correct her bent fingers and clubbed foot. After tubes and continued doctor care she can now hear high-frequency sounds and respond to simple commands. Her foot is still bent some, but she can put weight on both feet.
Michelle was thought to be mentally challenged due to her poor hand coordination and language skills. For three years we worked stubbornly toward my minigoals to improve her language. She was retested and placed in the normal range. Language is now one of her strong points. She has a great memory and she is a good speller. This year she was transferred from the special-education classroom to a regular fourth-grade class with a paraprofessional. She spends two to three hours nightly working on homework and minigoals, but I make sure she takes time to relax, too.
After trying for four years to work buttons, Michelle can now dress independently. She was able to roll the Braille paper into the Brailler all by herself just this past week!
Makaily has the most challenges. She still cannot talk. Total blindness complicates the learning process for her and has its own set of challenges, but communication, mobility, eating, and potty training are her biggest challenges. She gets very angry when she can't express her needs or go where she wants to go without help. She still lacks confidence to walk far by herself, but recently she took twenty steps on her own down the school hall.
Makaily went through many stages to reach this point with her walking. She began with a gait-trainer. Once she could walk while holding my hand, the physical therapist made her a pre-cane with wheels. She then switched to an NFB training cane until she could hold her own cane. She would not walk without someone touching her shoulder or shirt tag until last month. I gave her a string to hold and led her around holding the other end. One day she took the string from me to play with, and she has been walking independently ever since.
Makaily enjoys skating, and she took eight roller-skating steps by herself last week. She kicked the soccer ball all the way down the field, just to touch the net. She nods "yes" to ride the horse again, and she won the "splish, splash" award at the Lions Camp for the Blind for her swimming acts in the water. I never know what she will like until we try it, so we try everything.
I do not know whether Makaily will ever be able to read Braille, but we are working on it. I write Braille letters on the wall with thumbtacks so she can get used to touching them. She scribbles "alalala" with the Perkins Brailler and throws away any book that does not have "bumps" on its pages.
We continue working on Makaily's goals daily. They include walking ten steps to the bathroom independently, feeding herself five bites of food, saying "Mama" one out of five times instead of banging her head for my attention, shaking hands when someone says "Hello," setting five spoons on the table for supper, carrying her cup back to the refrigerator without dropping it, taking clothes out of the dryer and putting them in the basket, and driving her riding toy through the house without help.
I think it is important to celebrate each success in some measurable form. We have had parties for eating enough when a child finally reached a weight of forty pounds. We had a sleepover with friends to celebrate the first time Michelle unbuttoned her sweater independently. Congratulation balloons are a fun way to celebrate a success. The day Makaily stood alone for the first time, I was so happy I called everyone who would listen. Makaily's smile as she stood holding the bag of things she got for standing by herself was the best yet.
It is fun to make scrapbooks full of pictures or tactile mementos to remember the little successes. You can record the activity and date on an audiotape and add a celebration song to go with it.
I try to make learning fun and turn it into a family activity we can laugh about. Laughter is like sunshine. We all need a daily dose.
My mom once told me to think like a clock and take only one tick or tock at a time. Some days we all need to take one thing at a time, remember to hug our kids, smell the flowers, and count our blessings.
As the parent of a child with multiple disabilities, it is important to recognize and accept your child's limitations. It is even more important to think about your child's strengths and abilities. Find a way to work around the limitations and reach the child within. Love can be a driving force. Parenting several children with multiple challenges can be rewarding even when your plate is full. It takes a lot of prayer, patience, and persistence to overcome our own limits, too!
Each smile from your child can dry a thousand tears and become a priceless memory to keep in your heart! Enjoy the blessings your child brings you today!
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