Interview with Barbara Coppo Today, Tyler R. Tichelaar of Reader Views is excited to be joined for an interview by Barbara Coppo, who is here to talk about her new book, “The Boy in the Window: A Journey Through an Unexpected Tragedy.” Barbara Coppo’s book is the story of her raising her son, Kenny, who has had mobility problems, seizures, and autism since he was one and a half years old. She is going to explain to us how her son came to have these problems and how she and her family have helped him through them. Tyler: Welcome, Barbara. I’m honored to have you join me today. I’m very interested in your story and trying to imagine what this unexpected tragedy has been like for your family. To begin, your story really starts when you took your son, Kenny, to get his booster shots when he was eighteen months old. I understand you had a funny feeling prior to going to get his shots. Can you explain what that feeling was?
Tyler: Will you explain what happened after Kenny got his booster shots? Barbara: The next afternoon Kenny suffered his first seizure, though I didn’t recognize it as such. We rushed him to the hospital when the next episode occurred shortly thereafter, in which he collapsed and went into convulsions. He had 9 seizures within 3 days after his vaccination. Tyler: What was the doctor’s reaction to Kenny’s suddenly being ill? Barbara: The doctors asked me what was different in his routine, did he fall, could he have ingested a chemical, had he been sick, etc. Of course it was no to their questions, but I told the doctor he had his ‘routine’ vaccination the day before. It got real quiet except for my hysteria. Tyler: How long was it before a doctor admitted to you that the vaccines could be at fault? Barbara: When we left the hospital the last day, a doctor rushed up to us and asked if we had been told the ‘pertussis’ part of the shot was the culprit. I already knew in my mind that had to be the cause, and he had just confirmed it. Years later during our lawsuit against the drug company, the UCLA Medical Center diagnosed Kenny with ‘Post Pertussis Enphalitis’. Tyler: Will you explain to us what “pertussis enphalitis” is? Barbara: Inflammation of the brain from chemicals, toxins, most likely the mercury from the vaccine, after crossing the blood brain barrier. Tyler: Will you explain to us exactly what a d.p.t vaccine is and why it caused a problem? Barbara: The D.P.T. vaccine is for diphtheria, whooping cough and tetanus. There are many reasons that a vaccine can cause damage. Mercury was still in the vaccines then, and still is in some today, even though ‘they’ say it is not. Expired shelf life, and improper storage can cause more toxicity. Combinations of vaccines in tiny bodies can cause mild to severe problems, and death! Tyler: What was your reaction to what the doctors told you and what you realized Kenny’s future could be like? Barbara: Doctors told us to put Kenny in an institution. They said his behaviors would be impossible to deal with. They were not helpful. Nor did they know what the outcome for Kenny would be. It was not until someone from the school district came out to ‘test’ him that I was told he was severely retarded for 3 years old and needed to go to a special education classroom immediately. It was at that point that I realized I had been in denial to the extent of Kenny’s brain damage. But I didn’t see it as a lifelong problem at that time. Always the optimist! Tyler: Was any of his development normal in those first three years, such as learning to walk or talk? Barbara: Kenny was a perfectly healthy, happy, robust toddler prior to his 19 month old D.P.T. vaccination. From birth to that day, his well baby check ups were always good and doctors commented on his alertness and his above average progress in speech. With only a few minor ear infections, he was never sick. Tyler: Has what you envisioned as Kenny’s future during that first year after the vaccines come to be the case, or has it been better or worse from what you expected nearly thirty years ago? Barbara: Much, much worse!!! Tyler: What would you say has been the hardest part of this situation overall? Barbara: Fighting for Kenny’s rights for proper day school placements throughout his growing years, while having to struggle daily just caring for him. The seizures have been the hardest for me to deal with, as a part of me dies with each one he has. The loneliness in our lives has been hard because of the inability to travel and visit with Kenny. Tyler: In what ways has Kenny been fortunate? What positive experiences have been able to occur for him? Barbara: Kenny has been able to enjoy people, just by observing them. That has been a blessing because most autistic people lack that interest. Even though he can’t talk, the opportunity came along that led to the discovery of the ‘genius’ locked inside. We also have a wonderful woman, Mary who came into our life and opened many doors for Kenny because she treats him as if he were family, and he loves her children, husband and all of their family functions. He has been able to win the hearts of those close to him, whether at the schools he attended and the many people we have had in and out of our lives to help out. One never forgets him! Tyler: Is Kenny able to communicate with people? Are you able to know what he is thinking or what he needs by any mannerisms or gestures he makes? Barbara: When someone is around Kenny long enough they begin to understand his wants and needs somewhat by his gestures, facial expressions, and some sounds for words. Ba bye, when he wants you to leave, com bak, mmm, for hungry, ga, ga, ga for bathroom, etc. Also the facilitation, [pointing to letters] that came about when he was 17 was a great means of communication for him. That lasted around 5 years because it was happening almost weekly. Now it is only on occasion because of a difference in routine. Tyler: What are Kenny’s physical abilities? Barbara: Physically, Kenny can run, walk but does not have a steady gait. He can use a fork somewhat, he can’t brush his teeth, all grooming has to be done for him. He can dress himself with assistance but can’t button, zip or tie shoes. He is pretty helpless. He is strong and doesn’t realize his own strength. Tyler: How did Kenny’s tragedy affect your family? Did it cause problems with family members or bring you closer together? Barbara: It was such chaos and unbelievable stress and exhaustion. I really don’t know how we did survive it. Of course it took a toll on relationships, my husband and me and our teenage daughter. But through the years, our goals became one of preparing and fighting the battles that were needed to obtain whatever was best for Kenny at the time, bonding us in that endless quest. Tyler: Why did you choose the title “The Boy in the Window” for your book? Barbara: Kenny will sit hours on end staring out the window, if allowed, as if he is watching the most fascinating television show. It is his retreat, his safety zone, and probably where he thought up his beautiful ‘star names’. We had a hard time prying him away once he ‘graduated’ from his special education class at age 22. He was depressed because there was no more school, the routine was changed. Tyler: What did he learn in school? Barbara: School programs at best for most of his life, were as good as the aides were devoted. He would progress, then, regress when aides he trusted and cared for left the programs. He was not taught scholastics; mostly the programs worked on self help skills. When he was about 14, I found the program I had dreamed about for him in another city and took him there for a few years. It was the first teacher who believed in these children and was first to get information from Kenny, such as math, using dice! Tyler: Will you tell me more about what you meant by his thinking up his beautiful ‘star names’? Barbara: Later when Kenny was facilitating, [pointing to letters], the amazing genius emerged and the discovery was made that he could read, spell, and he answered questions in a humorous and innocent way. He told of a ‘game’ he played in his mind. It was naming stars, beautiful names, such as; Quor, Lijer, Lepus, Zaeus, Quowz,Yorq, Bey, Lius, Zyke and Snoope, [his sense of humor]. There are many more, and what is really amazing is he also took credit for real star names, Cygnus, Cepheus, Sirius. I wouldn’t have known if I hadn’t gone to the library. Kenny was never taught anything about stars, the universe or anything so complicated. I am currently writing a second book about Kenny, called, ‘Starboy.’ It will be the world through his eyes, if he could talk and why he acts like he does. Tyler: What kinds of support have you found over the years? Have you had contact with other parents whose children developed similar issues from the vaccines? Barbara: During our lawsuit we were in contact with many, many families who suffered similar problems. Our main support has been from the North Bay Regional Center through the years. Tyler: Tell me what happened with the lawsuit. When did you decide to sue and who did you actually sue, and what was the outcome? Barbara: When Kenny was still young, around 6 or 7 and it looked like this may be a lifelong situation, someone suggested we sue the drug company. I found an attorney who only represented vaccine victims. For 6 long years the drug company tried to prove his damage was from anything but the vaccine. They could not find their proof. We sued Wyeth Labs and settled out of court in 1987. Tyler: Barbara, have the vaccines changed since then? What should parents today know about having their children vaccinated? Barbara: Parents are told there is no more mercury in vaccines but it is still in some. Today a child is loaded with even more inoculations by the time they are 5. It is no wonder that autism and other problems in children are mounting. Parents should read, read, read, and a few helpful tips are: Don’t vaccinate; if there are extreme milk allergies, if a baby is premature, wait until their weight is normal, or if there are seizures in the family history. Wait months after a baby has been sick before vaccinating. Ask for the Japanese version of ‘Pertussis’, it is safer! Give smaller dosages and less combinations of vaccines. Tyler: Barbara, after all these years, how best would you describe your experiences as Kenny’s mother? Barbara: As Kenny’s mother, I have learned how precious life is and the things that are most important, along with patience, humility and a great compassion for others’ sufferings. Kenny has taught me to have the strongest faith, an open mind and a belief in miracles. The downside is I am the world’s biggest worrier and it has drained me. A piece of me dies with each seizure he has and I never know what to expect from one day to the next. It’s a wonder I don’t have a full head of grey hair! I should, cause I’m 66 years old. Tyler: You must worry about what will happen to Kenny when you are gone. Is he expected to live a normal lifespan and outlive you? Barbara: Worrying over Kenny’s future when we are gone is probably the hardest burden to live with. Of course we have tentative plans, but people and things change and there is no certainty for him. I am constantly searching for ideas on this matter. Not ideas, people. Now it is Mary who has been in our lives for a long time. But Kenny will never get the same care he has from us. No one knows his lifespan, the seizures and his medicine is a huge factor. I think his life will always depend on the degree of care he receives. Tyler: What made you decide to tell your story by writing “The Boy in the Window”? Barbara: Going through life being told constantly that Kenny was nothing more than a vegetable, unintelligent, didn’t understand anything, so therefore don’t bother teaching him, etc., was never my conclusion about him. I knew he understood so much more than he was capable of showing. But I had no idea the extent of his knowledge until the method of facilitation, [communication by pointing to letters] was brought to my attention, and tried with Kenny at age 17. I tell all about it in my book and devoted a chapter to his heartbreaking, humorous and innocent answers to some questions asked of him by different aides. The discovery of a multi-talented teenager emerged. Then, followed by the incredible gift of telepathy. I knew during this period of time in our life that someday I had to share Kenny with the world. This boy who grew into a young man, challenging his parents with behaviors everyday, pushing us to our limit at times! Behaviors that had gotten so out of control, we thought of obtaining a straight jacket to keep him from hurting himself, or us during tantrums. Who wouldn’t write a book about a mystery such as Kenny? Unfortunately, his gifts have not helped him rationally or otherwise. Tyler: Do you ever wonder whether Kenny came into your life to teach you something? Do you feel there has been a reason for your family’s experiences with him? Barbara: I wonder all the time about the lesson having Kenny is teaching me. I know that I have learned patience, unconditional love, humility, compassion for others and what is truly important in life. But only God knows the real answer to this question. Tyler: Barbara, if a parent today realizes their infant child has the problems Kenny has, what advice would you give them that you wish someone had been able to tell you in the beginning? Barbara: I really don’t know how to answer this question because I don’t know what would have helped me, or changed anything. I do wish at times I would have been firmer with Kenny, instead of sometimes giving in, when I shouldn’t have. I might have more control over him now, if I had. I have friends that say I did everything I possibly could for Kenny. But even today, I wonder if there is something more that I can do. Tyler: Thank you so much for joining me today, Barbara. Before we go, will you tell us where our readers may find out more information online about your book and where they can purchase a copy of “The Boy in the Window: A Journey Through an Unexpected Tragedy”? Barbara: My website is theboyinthewindowbook.com and can be purchased online at amazon and Barnes & Nobles. Tyler: Thank you, Barbara, for telling us about Kenny today. I hope it encourages many parents to have hope and to read “The Boy in the Window” for more information. And I hope you’ll come back when your book “Starboy” is published. Listen to interview on Inside Scoop Live |
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