Future Reflections Special Issue: The Teen Years
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by Joanne Laurent, MA, COMS
From the Editor: Joanne Laurent is an ACVREP-certified orientation and mobility instructor. Her teaching experiences include both adult services for the blind and K-12 school children. She has an unusually high success rate with people who have been labeled "spatially challenged" or "cognitively impaired." Her business, Highest Expectations and Adaptive Travel Skills Instruction for the Blind, can be found online at <www.blindcoach.com> .
I have taught cane travel and daily living skills for over twelve years. Frequently I am called upon to perform vision assessments of transition teens who have failed to receive an adequate education. I am amazed and ashamed when I discover that professionals have mislabeled their blindness as some variation of cognitive impairment. It's hard to believe such atrocious errors still happen in our civilized society. We claim to value education above all else, but I witness this heart-wrenching oversight again and again. Blind and visually impaired children who struggle through school without proper training, equipment, and accommodations are often incorrectly labeled as being cognitively impaired or learning disabled. The results are illiteracy and helplessness that easily could be prevented by teaching these children Braille and the other adaptive skills of blindness. Sadly, many of these children are destined to live limited and possibly even custodial lives.
I have trained many teens and young adults who looked as though they would spend their days in assisted living situations. Their daily living and academic skills were so profoundly substandard that doctors, teachers, administrators, and even their own parents considered them to be mentally incompetent. Many of these students, who were the victims of inferior training, have been rehabilitated successfully. They may continue to receive assistance in a few areas such as financial management, but are otherwise living independently in their own houses or apartments. Many of them are now employed.
Starting with a Solid Foundation
I once visited a thirty-year-old man in a semi-assisted living situation. He wanted to learn to go to the store. My assessment revealed that he had poor orientation inside his own home and was unable to get to his mailbox. As I read the case notes, I discovered that he had spent a few years at a school for the blind and later had completed training at an adult rehabilitation center. In addition, an itinerant O&M instructor had attempted to teach him how to get to the store. The instructor concluded that it was not possible to teach this man to travel anywhere. The case notes stated that he was "unable to generalize information."
I am convinced that when a willing student is unsuccessful, a change in teaching methods will significantly boost skill mastery 98 percent of the time. My motto is, "If you can't learn it, I'm not teaching it right." Since this man truly wanted to learn, I jumped in with gusto. Sure, there were frustrating moments. But once I figured out our problems were related to communication and not to any mental incompetence, progress began.
I must admit that it took me quite a few lessons before I figured out why this student was behaving so inconsistently. I finally realized that he didn't understand what I was asking him to do, yet he attempted to follow my instructions unquestioningly in order to please me. If I asked him to walk two blocks in a straight line, he'd respond by taking off with complete confidence. Soon he would begin making turns or doing other strange things. Sometimes the behavior I observed appeared to be defiant and uncooperative. But the student approached each lesson with eagerness. His manner forced me to find another explanation for his seemingly uncooperative conduct.
Eventually I discovered that this thirty-year-old man did not understand terminology that I assumed would be basic for anyone who had received a lifetime of orientation and mobility lessons. He did not know the meaning of words such as block, curb, or corner. He was unable to let me know that the language I used was meaningless to him. Once I taught him some of the basic concepts one might teach to a small child, our lessons progressed nicely. After five years of two or three lessons a week, he lives independently. After much struggle and hard work, he achieved his dream of getting a dog guide.
The case notes had claimed that this man was unable to generalize. Yet his apparent inability had little to do with his mental capacity. He simply had no experience or foundation upon which to build new information. Once a foundation was in place, practice and repetition helped him bring a sense of order and meaning to each new experience.
At first we struggled with very simple routes. We progressed to more complicated routes and even routes involving multiple bus transfers. Today he plans his own bus routes and experiments with travel to new places. Occasionally he calls me and requests help learning to get to a new location. The lesson is quick because he can relate what I describe to an array of past experiences. He usually meets me at a bus stop in front of the desired location. He needs only ten or fifteen minutes of help to explore an unusual situation that has him stumped, such as a business that is far from the street or set at an odd angle. Other than seeking occasional sighted assistance to learn about an unusual configuration, this man who was labeled "unable to generalize" is truly an independent traveler. He lives alone in his own house, cares for and enjoys the companionship of his dog, and has developed a social life.
A twenty-year-old man enjoyed a similar happy outcome. The case notes said that he was unable to understand spatial concepts and would never be able to travel. When I began to work with this young man, he lived with his parents and was completely incapable of finding his way around his own house. He was accustomed to having his food cut up for him and did not know that frozen peas were stored in a place called a freezer. At the same time, he was a proficient Braille reader and a computer genius. He was well-mannered and articulate. I was certain that no learning disorder existed, in spite of reports to the contrary. With the help and support of a wonderful parent who allowed the learning process to develop, this student is now working and living independently (with support in handling a few things like finances). He has friends for the first time in his life.
I feel very fortunate to have worked for an outstanding agency that allowed me the necessary training time to help these and other students. Ordinarily, blind rehabilitation programs cannot afford the luxury of time to remediate a lifetime of low expectations. These students need help building skills necessary in nearly every area of life. It should not be necessary for an adaptive living skills teacher to teach young adults how to tell time, count change, and use fractions so they can follow a recipe. Sometimes, however, these basic academic skills must become part of the rehabilitation training program. My success in teaching these concepts within the limited time frame available has shown me again and again that no cognitive impairment was present. These students are simply blind, and thus they grew up with low expectations. My successful results with this overlooked group are considered to be happy endings. Yet I am saddened, knowing that these students could have had so much more freedom and happiness if only they could reclaim the first eighteen years of life experiences that were stolen from them by the "experts."
"She Doesn't Need a Cane--She Just Needs to Look Where She's Going!"
Society places a very high value on vision. For centuries blindness has aroused pity and denoted shame, poverty, and incompetence. The stigma of blindness affects children as well as adults. It is passed down to children by their parents, teachers, and doctors. Adults continually praise any ability to see a target object. "Can you see that?" "Keep trying!" "That's great, Timmy! You saw it!" Children quickly learn that seeing pleases people and not seeing troubles them. They feign being sighted and get by the best they can.
An astonishing number of blind people willingly choose to hide their vision loss. They present themselves as sighted due to the negative public perception that is associated with blindness. Most people who pretend to be sighted have not been exposed to proper training and opportunity; a large percentage grow to love adaptive devices and techniques once they experience the freedom that comes with using these tools.
Children and adults can be masters at hiding significant visual impairments. They may appear to function well because they have learned to compensate and adapt, but they tend to avoid unfamiliar situations as much as possible. A student may appear to travel freely and to see and understand classroom dynamics, but he or she often experiences unnoticed difficulties and/or anxiety.
Visual impairment can easily be overlooked in children who work hard to fit in and appear "normal." I recall performing a vision assessment on a nine-year-old girl. She was crafty about suggesting the best routes for traveling throughout her school. With the congenial demeanor of a hostess, she helped me find my way around during my first visit. She traveled freely and easily without any indication that she needed a cane. However, I soon realized that she was avoiding stairs. When I asked her about my suspicions, she admitted that she was afraid of stairs because of her poor vision. She could ascend and descend some familiar staircases without appearing disabled, but her anxiety was an unnecessary source of discomfort that she was hiding from her teachers. Although it was no secret to the school staff that she was legally blind, her poor travel vision had gone unnoticed. Sometimes she completely missed seeing unexpected drop-offs and surface changes. She was unsafe walking near stairs and drop-offs without a cane, and she was alone with her distress.
In class this child could not see the board from her seat. She was expected to keep up with the class by the repetitive action of focusing her monocular on the board, releasing the focus to stop and write a note, and then focusing up on the board again. She could see only a few letters or words at a glance, and her narrow field of vision caused a severe reading hardship. Tragically, her blindness won her the label "slow learner." All she needed in order to thrive were some reasonable accommodations. She needed an advocate to ensure that she could sit closer to the board and get Braille training added to her IEP.
More Kids Need to Learn Braille!
I work with a gut-wrenching number of young adults who were denied the opportunity to learn Braille as children. While performing preliminary low-vision assessments to determine training needs, I encounter far too many recent or soon-to-be high school graduates who lack basic literacy skills. When I am told that print is a student's reading medium, I assess his or her ability to read printed material using whatever aids are currently available. First I establish that the student can see the printed text, bring it into focus, and recognize it. If the student is able to see the print but cannot read it, I might ask him to write something such as, "Dear John, How are you today?" with an easy-to-see bold pen. Sometimes as he struggles to write I make the horrifying discovery that yet another blind child was pushed through the school system with no knowledge of the written word. I learn that he is unable to spell any simple words and has no knowledge of letter-writing format. So I help him out with the spelling--because I'm trying to determine what he can see, not his spelling ability. As I spell out, "D-E-A-R J-O-H-N comma" I have had graduating seniors ask me, "What's a comma?" and "What's a question mark?" Since all properly educated blind people fully understand spelling and punctuation, I feel compelled to inquire why these children are being allowed to graduate. I always hear the same story: "He's cognitively impaired," or "She's learning disabled." If I actually believed those statements, I could say that this situation is not my business. But when a whole life has been destroyed because blindness was misdiagnosed as low intelligence, it is my business!
Defeating the Label
I have spent hours observing appropriate behavior and engaging in intelligent conversation with students who carry the "cognitively impaired" label. Many of them excel in several intellectual areas and have mechanical or computer skills that far exceed my comprehension. I do not accept that the school's failure to educate them is due to their inability to learn. These children should have been taught to use Braille as their primary reading method.
Children can only learn skills such as reading and writing through practice. "Helping" by reading their printed homework questions to them does not constitute practice or lead to a proper education. Children will avoid reading when it is difficult or not enjoyable. If they avoid reading they will never learn to read effectively. Dr. Ruby Ryles points out that reading must be pleasurable if we are to expect a child to read the quantities of material necessary to acquire good reading skills. "To be able to be literate," she states, "our children must physically read the same amount of material as sighted kids." She adds that if print reading speed "is not up to snuff, you need to be looking at Braille" (Ryles, 2004).
Please Don't Wait!
If vision loss is detected in a child of any age, a specialist in blind rehabilitation should be contacted as soon as possible. Parents must learn how to ensure that their babies and children grow up to be well-educated, competent, happy, successful adults who fully participate in life. If there is the slightest concern that a visual dysfunction may be occurring, please request a consultation with a rehabilitation specialist for the blind and an IEP or IFSP advocate. The National Federation of the Blind will help you find an advocate and will explain IFSP (for babies) and IEP (for children age three and up). It is vitally important that parents become informed of all rehabilitation options. The quality of a child's entire life may depend on the decision that is made in the snapshot moment of one person's observation and recommendation.
Ryles, R, PhD, (2004, 1992). Is your child age-appropriate? Future Reflections, Vol. 11, No. 5, Convention 1992.
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