The Indelible Spirit and Potential of YOUR Child
Turn tragedy into triumph
By Dr. Denise M Robinson
I am asked to be a keynote speaker or train people during conferences each year. Due to my own heavy schedule, I have to decline most times, but hope to take on all of them as I hire more teachers with the same philosophy as my own. I have always wanted to deliver a speech such as this to parents and teachers so they understand—a child can do anything if given the vision and instruction to do so. You can help anyone reach his or her highest potential if you change your vision of “what is normal.” Fear Not and then Teach!
Most believe that having a child with a difference such as being born blind, or deaf, without limbs etc. is the most devastating experience anyone can have. Yes, we all have this image of the “perfect” child in our minds and when the doctor tells us something “different” we are crushed. Go through the crushed, the crying, the loss you feel, but I am here to tell you, if you can “change your normal image” you will thank God for the incredible difference of your child as you encourage her or him to go on to face the great challenge that is life. But the hope is, you read this article first, then any child you have, there is already hope and delight….no matter what the doctor says.
I say this because I have faced incredible challenges many times over and if my parents were not the type to say, “pick yourself up and go” I would not be here today, and they would have been crushed people living in defeat over my challenges. Is this easy? NO, but you can do it with HIM. I am going to add a caveat here because I am not sure you can do it without faith in God. When you cannot do it on your own, and we cannot, HE is there to move you along and carry you at your lowest points. He will give you the peace to go on and fight—because life is a battle to win (Ephesians 6:12). You can do all things through HIM who strengthens you. (Philippians 4:13).
So now, I will tell you stories about my families over the last 30 years who have gone on and are winning this battle. I wish I could tell you all the stories but time and space will limit the incredible gift I have been given of being able to teach these students and make their families part of my huge extended family… and we are family. I fight in every battle with them to help them go on too.
During Student teaching, I met B. During the beginning of my career, any “different” child was housed in large schools where they could be “babysat.” Their words as is this story….I had no idea this was how “different” children were taught. It was eye opening and terrifying to me. B was in a wheelchair, very thin and slumped over. He had a brace supporting his chest so he could “sit up.” At the time, he had a small box in front of him that was labeled with words and phrases and when it was pressed it talked—it was B’s “voice” to the world. He had been in the institution for 15 years before this tool came along. A tape recorder was sometimes placed in front of him and a group of others, to “listen” to stories. His life existed of being diapered and tube fed throughout the day, then he would go home to his family.
One day a distributor of these “talking boxes” came to the school to demonstrate what it could do. The school bought several and used them with the higher functioning children. As a lark, one of the teachers took one of these boxes and placed it on the table that was hooked to B's wheel chair. A finger on his right hand had movement so the box was placed close to his right hand and just left there to see if anything would happen. Slowly but surely…and it was slowly…B poked out “please move me, I hurt.” That story shocks me to this day and changed my whole concept of how to teach children. It shocked that teacher too as well as the school. He was given direct instruction on how to further use this box and for the first time, B could “talk” to the world around him and interact with his family. There is a brain behind that body!!!
G was born blind in Mexico. His mom had 5 children already and the doctors told her to put him in an institution and forget about him. She was poor but strong and kept asking the question, “Where can I go to get him educated?” She would discover a little town in Washington and there I would meet him in a self-contained classroom, rocking back and forth, furiously pressing his fists to his eyes while whining a painful moan. He was 17. The classroom teacher took me aside and told me there was really nothing I could do. “He is a vegetable,” she explained very matter of factly
I “HATE” that phrase and loath all concepts behind it. NO ONE is a vegetable! Everyone has something to contribute to life—EVERYONE!
I asked the school for a separate room in order to instruct him. My “B” experience taught me that there is always a brain in there. You just need to instruct the child and then sit back and be amazed. Because the school would not invest in any “tools” for a child with such differences, I got a computer donated, added talking software and fixed it so he could use it. I did discover he had a bit of vision so added high contrast and large letters -72 font -in WORD so I could start teaching him the English alphabet. Mom came to every lesson so she could follow through at home. I always teach the children what makes sense to them in their world. So, the first words we worked on was, “I love mom.” We worked a great deal on him learning the keys so he could constantly have the talking software reinforce what he was “seeing” to what he was hearing to what key he was pressing. He learned how to type that sentence out in about 6 months. Once he got what I was trying to teach him, the next phrases came easier as he would type out words and “talk to us”. He also began to speak and repeat the words. It took mom 17 years, but her son could now start to communicate with her as well as answer questions. Yes, it was slow, but just think where this child would have been able to do if someone had started with him at 0, 1, 2, or 5? Think about it! On another note, he would NOT talk to the negative teacher or anyone like her. I have discovered that children very quickly pick up on who is in support of them and who is not. If your child gets a negative teacher who believes your child does not have potential or promise …MOVE THEM!
Y came from Ukraine and had lived with another Ukraine family in the US for approximately 2 years while receiving medical treatment. She was born around the time of the Chernobyl nuclear accident and a brain tumor was the result. Eventually, the tumor broke through her optic nerves and took her sight at 15. Her parents were finally able to immigrate to the US so they could all be together and be able to seek out education for her—all 12 of her siblings and parents. As I walked into the meeting room at school, I saw a grief stricken and troubled mom and Y along with their interpreter. In Ukraine, there was no hope for any “different” child and mom had a very horrible picture of what would become of her daughter as explained to us through the interpreter. After listening to all her fears, I went about explaining the plan I had for her. She was going to learn how to use a computer with talking software and a braille display. She would learn to read with her fingers and I described all the other blind techniques she would learn to access the world and live out her dreams. I saw a light come on in mom and Y. Eyes wide open—they had no idea what a full life she could live. I told mom I had done this many times before and Y would meet other students just like her who were successful in school and life. They left with trepidations, but a bit of hope. They had never heard of this before.
Y and I set about instruction. Here is where faith comes in. She knew about 8 words of English and I knew 0 Ukraine or Russian (she spoke both languages). Her first words to me were, “I want to die because I am blind.” I prayed before, after and through every lesson. There was no Ukraine talking software at that time (or any foreign language) and I finally located someone in Russia who could help me write and load scripts for Russian talking software. But, most of it was just me teaching her hand over hand or hand under hand on where the keys were and what the correlation was between Russian and English; and WOW did this girl learn fast. Within 3 months, she was doing all the interpretation for the family and could easily speak to all her teachers and me. She was typing around 60 wpm with few errors. Her fingers flew across the keyboard like the wind. As summer approached, I knew she needed a computer at home so I went to the Lions Club and raised enough funds to buy what she needed at home. She was now emailing her friends, completing and turning all work in through her email and doing research on the world with her computer. At the end of those 3 months, she told me, “I am so happy. I want to live.” I now know I can do anything!”
K was born blind, cleft palate, had partial limbs and other differences. Her family faith, remarked, “She is a special and beautiful child who was wonderfully made.” They went about trying to have her be as “normal” as any other child is. By 2nd grade, the teacher put in a request for a teacher of the blind to evaluate her. She was 1 inch from the paper and had 2.5 fingers between 2 arms (1 being a partial arm). She had great difficulty writing. She was very small for her age and thus far, the teachers had just moved her along. When I evaluated her, I could not get a grade level and discovered she was legally blind. She could repeat the alphabet to me. No teacher had really given her hope or goals—she was a part of class. They appeased and loved her and had greater pity for her….and no hope in what she could do.
At her IEP meeting, I told the team that she really needed to have a computer with talking software and a braille display along with learning braille and everything else that went with blind skills. Mom did not want braille. “It would make her blind.” She did not want those services, so I just told her to read over my goals and think about it over the summer. In the meantime, would she agree to a CCTV – a tool that would enlarge all text to the 72-size font she needed to “see.” She agreed to that. The new school year started and the teacher tested her reading ability on the CCTV. She was reading 12 wpm at “sorta” kinder level, missing the correct pronunciation of most words. We reconvened for another meeting and mom agreed to services. However K needed more surgery and would be gone until February.
I began teaching her and she took off on the computer as all children do. WOW, the speed at which a child learns when given a computer with talking software and braille display still amazes me every time I go through the keyboard commands and show them how to fly and move faster on that keyboard than their sighted peers can with a mouse. Yes, eventually the sighted students go to my students, asking them how to do something. What a confidence booster. In braille instruction, only 1 finger could feel the braille so she marked her spot with her left one and only appendage while reading with her right finger. I kept having her stimulate the left finger with the braille, with her moving it across the dots and within 9 months the nerves started to grow and form in that appendage and she could start using it to read braille. YES, the body constantly grows and learns…even nerves. Just teach it!!!
By the 15 month of instruction, she was reading braille at 115 wpm. She is now in 9th grade, on honor roll, school president, a leader in her school and class with her peers looking up to her—no more pity—just amazement. She can complete any task using her computer that allows her to type out over 77 wpm and read braille at 225 words per minute. Yes, only 2 fingers can do that and every year, her goals increase, just like the standards for every other child. She completes all work just as her peers. The child no one had hope in, is now leading her class and school.
The director in hopes that I could do something brought T as well as the other students in this district to me. She was not happy with their present TVI situation and wanted a change. T was in a self-contained autistic classroom. By 1st grade he had not been taught to read or write and played games and was “controlled” by the classroom teacher and paras. He had no blind skills. After completing an evaluation on him, I came back with my recommendations. Mom did not want to pursue braille, despite the fact she was taking TVI classes and wanted to become a TVI. She believed the "wrong message of blindness." During evals and instruction now, I take video recordings—an ongoing report card and send these to the team every couple of weeks. I had done this with the evaluation of T and the parents were shocked at him positioning 90 Font print cards up to his nose to try to read. That is all it took. Yes, a video is worth a thousand words!
T did not understand reading and writing and what I was trying to do when we first began. He spoke little…very little. He was very tactile defensive and leaned over everything to try and “see.” He had a lot of verbal outbursts. Even the para thought I was “nuts” trying to teach him braille and computers but fortunately trusted me—somewhat. By February, he was typing simple words and repeating them while reading from his braille display. Hard copy braille of his work from the brailler was sent home. The first year was work that was all about him so it made sense to him on what he was typing and brailling. By the end of the school year, he was truly talking and interacting with us and working on 1st grade level work. Talking software not only can teach a foreign language and how to speak English, it can take a non-speaking child to speaking. By the following year, he was getting 90-100% on 2nd grade spelling tests, learning Nemeth and doing some of the 2nd grade curriculum and talking nonstop. He is also mainstreamed part of the time in regular education of which he is doing spelling. I predict he will be fully mainstreamed in the very near future.
The bottom line is—change your idea of “normal.” There are many different “normals,” and that makes life exciting and challenging. Challenges make us grow stronger if you allow them to. Have a vision then times it by infinity: because that is the potential of your child!