Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Barbara Hammel
From the Editor: In his thought-provoking 1993 speech "The Nature of Independence," NFB President Emeritus Dr. Kenneth Jernigan suggested that independence for blind people is not strictly defined by the use of Braille and the long white cane. In this article Barbara Hammel ponders the nature of independence for her twin sons who are blind and on the autism spectrum. Barbara is a longtime Federationist and serves as secretary of the Iowa Parents of Blind Children.
In 2005 my husband, David, and I started on a journey that changed our lives forever. On June sixth, the morning of our seventh anniversary, we entered the adoption center in Kunming, Yunnan, China and met our almost three-year-old twin boys. Ji Ming and Ji Kun sat so still that I, as a totally blind person, didn't quite believe they were there. I don't know what the woman from the orphanage finally said to them, but suddenly Ji Ming became our Paul. He came right to me and wanted me to pick him up. When David picked up Ji Kun, he became our Jesse as he let out a squawk of displeasure. "He's the crabby one," they told us, and for the next three years they were right.
When we first learned about the twins, we knew that they both were blind. I looked forward to teaching them to become capable, confident blind men some day. I couldn't wait to introduce them to the world of books through Braille and the world itself through the tip of a cane. David dreamed of chess champions and half of a barbershop quartet.
By our second day together Paul recognized his name. After six months we knew that both boys understood what we said to them. Nevertheless, they did not begin to speak. Even after tubes were inserted in their ears to correct mild hearing losses, their language output was minimal.
Two months before the twins' fourth birthday we received a stunning diagnosis. We learned that both of our sons were on the autism spectrum with developmental delays and disruptive behaviors. So began a journey down a road far different from any we had expected.
Each person with autism has a unique set of strengths and difficulties, and you cannot use a cookie cutter approach. That's why autism is called a spectrum disorder. People on the autistic spectrum may have atypical development in such areas as eating, sleeping, and communication. Our boys are challenged in each of these areas.
There are many theories about why autism occurs and many helpful treatment strategies are available. The first thing David and I discovered is the importance of good sleep. We tried melatonin to help the boys get into a regular sleep pattern, but it did not work for them. From melatonin we moved on to Clonidine, a blood pressure drug that sometimes helps children with sleep problems. For Jesse it seems to be useful, but in Paul it triggered problem behavior. Our counselor then suggested an herbal compound, valerian root. Paul's behaviors haven't decreased but the anger behind them seems to be less intense. Light therapy may also be helpful, and there are many other options for us to explore. These are just the stops we have made so far on our journey.
Eating has been a major issue for the boys. We know that nutrition is important, but when little lips and tongues don't want to touch fruits and vegetables you feed whatever you can. Paul has always been a good eater, but a picky one. Some of his behavior problems may be due to the fact that he is a noodle-hound. We've learned that carbohydrate obsession can be a sign of a mineral and/or vitamin deficiency. If that deficiency can be corrected, we may see improvement.
Jesse has presented us with many feeding challenges. To this day he does not feed himself independently. We still have to load his utensil, and this is a grand improvement for the little boy who ate almost nothing when he first came home to us. Jesse would eat apple at the beginning, so we knew he had the proper skills for chewing and swallowing. His preschool added pears to his diet. We thought he would soon learn to like more and more new foods.
After a month of preschool, however, Jesse quit eating solid food of any kind. We still have no idea why he stopped eating. For a year he lived on PediaSure, a food-replacement drink used by children who have feeding tubes.
Two months after Jesse stopped eating we consulted a feeding specialist who started us on a program to reintroduce solid foods. First we had to get a spoon into Jesse's mouth. We dipped the tip of the spoon in baby applesauce and touched it to his lips. When he finally tolerated that, we started to push the spoon in farther, still with just a little bit of food. For a long time he took only one "bite" per meal. When he could accept the spoon more comfortably we increased the number of "bites." Seven months into this program we discovered that Jesse likes crunchy foods. Funions and pretzels became his rewards for taking spoonfuls of applesauce and other foods. By the time we went to the 2007 NFB convention in Atlanta, Jesse was eating one to two jars of baby food per meal, but still drinking PediaSure from a baby bottle.
Two years to the day after Paul gave up the bottle, Jesse took the same major step. Coming home from Atlanta, he tried drinking soda from a straw--and hated it. We found that drinking straws didn't work for him, as he tended to bite down when he sucked. Instead we used a sturdy straw cup. By the end of that year he'd moved up to pureed food. Grandma stopped pureeing when she took care of the boys during the Dallas convention of '08, and he hasn't looked back. He eats few noodles but he loves rice and meat. (And did I mention he loves meat?) Steak, Smokies, ham, hamburger, chicken--the boy who once abhorred solid foods now relishes them all!
Since it's still virtually impossible to get the boys to eat fiber, the problem of constipation looms large. We combat it with a stool softener called Miralax. Miralax is a kind of powder that we put in their food or cups of water. It smells like glue, but the boys don't seem to mind.
Paul, the more extroverted of the twins, has acquired some limited language. He cannot seem to say most of what he wants to tell us, however, and becomes easily frustrated. Unfortunately, right now his main mode of communication is a set of disruptive and hurtful behaviors frustrating to everyone around him. The school continues to push for more speech. We, his parents, would like to explore the use of an augmented communication device that could help Paul express himself more freely.
Jesse, the more introverted twin, seems to have little ability or desire to communicate verbally. He has learned signs for "drink," "more," and "all done," and he can shake his head "yes" or "no." Recently he has started taking one of us by the hand to lead us to what he wants. This is a huge step for the little boy who scarcely responded to any stimuli when we adopted him five years ago!
Autistic people who are sighted are generally thought to be visual learners. Most of the teaching methods used with autistic children are based on visual pictures. Sighted experts seem to be stumped when they have to find alternative communication tools for kids who combine autism with blindness. The Texas School for the Blind and Visually Impaired (TSBVI) has a good starter selection of tactile symbols that we have used for schedules. Paul can now remember a whole day's worth of activities.
He learns new symbols quickly, after being exposed to them only two or three times. He is rapidly advancing beyond the symbols we have available. If he were a sighted child, his book of pictures would be far more extensive and would greatly enhance his communication options. There is a tremendous need for nonvisual materials to meet the needs of blind children on the autism spectrum.
In the Federation there is a constant emphasis on independence. Before I met Paul and Jesse, I believed that independence meant Braille literacy and travel with the long white cane or dog guide. The twins have given me a new perspective. Perhaps Braille will always be a mystifying jumble of bumps on paper for them. Maybe for them the cane will never be more than an extension of the arm, a means to reach out and hit people. We face the possibility that our children may not become independent in the ways we once envisioned. We will never stop trying to teach them, but our understanding of independence has begun to take a new shape. For some people, independence may be the ability to dress and feed themselves. It may mean the ability to convey one's basic needs to others, whether through speech, signs, or a communication device.
Paul's progress has been slow but steady. Today he knows the words to more than a hundred songs. And a few months ago, after he asked for a ride in the van so many times I lost count, he turned to me and said in my own exasperated tone, "I said no!" And Jesse? That little boy who wouldn't eat or walk, who cried all the time and hated to be touched, the little boy who was only happy in a cardboard box? He is blossoming, not in slow, steady steps like his brother, but in leaps that startle and amaze us.
I know we are not alone on this journey we've begun. Many other parents are learning to dream different dreams for their children with multiple disabilities. We travel a different road and the milestones may seem small to the rest of the world, but they are giant steps for us.
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