It saddens me everyday to see that the ABA “advocates” want to make this a zero-sum game: either you’re an absolute ABA supporter or you “swim with the dolphins.” It should be extremely frightening to society at large to hear parents call their children useless, or to think that ABA and institutions are the only options for autistic people. It is even sadder when a Globe and Mail reporter doesn’t do her research to either get her facts right, or to get the very important other side of the story from autistic people and the many parents like me who just wants my son to go to school and be allowed to receive the accommodations he requires – whatever they may be at different points throughout his life. PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 11/22/2006 11:33:00 PM 7 COM M ENTS LINKS TO THIS POST WEDNESDAY , NOVEM BER 15, 2006 More Positive Autism I'm about to go away for a few days and may not post to my blog. I find I'm at a loss for words these days, which is a sure sign I need to retreat, be alone, collect my thoughts. In the meantime, for Toronto viewers, I've posted a little more "positive autism," and I hope that people will figure out that no matter what level of "functioning" we can surely all learn from each other. It's like what Jonathan Lerman says, a man who at ten was still completely mute, who is learning to speak more and more today, going on nineteen years of age: "There's no such word as can't." And you don't have to be a Nobel Laureate either! Vernon Smith, Nobel Prize Winner & Autistic, PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 11/15/2006 12:11:00 PM 6 COM M ENTS LINKS TO THIS POST THURSDAY , NOVEM BER 09, 2006 Young Blogger Asks Age Old Question To cure or not to cure, that is the question. This is a post by a 20 year old David, who decided to take a year off college to persue this project in his blog titled Growing Up With a Disability.He is recording both personal stories and stories of others with disabilities. Here is an excerpt from his post, which is applicable to autism: My first interviewee, “Ashley,” discussed her perspective on a cure for her learning disability. Ashley said she would only accept a cure if it were on her terms. What society calls rigidity and stubbornness, Ashley calls discipline and focus. From her challenges, Ashley has learned patience and perseverance. She feels aspects of her learning disability have helped her become skilled at math, science, martial arts, and fitness. Ashley wonders if a one-size-fits-all cure of her learning disability could rid her of some of her very best qualities. Many people who have made valuable contributions in society are thought to have had learning disabilities. Would Leonardo da Vinci, Pablo Picasso, Albert Einstein, and Winston Churchill have wished there had been a cure? What about Jay Leno and Robin Williams? Would these and other people with learning disabilities share the same concerns about a cure as Ashley? Would the unique talents and gifts of these scientific and creative individuals be lost if their disabilities were cured? I wonder how Franklin Delano Roosevelt would have been a different leader had he not had the perspective and skills learned from dealing with polio. How would Stevie Wonder and Ray Charles be different musicians if they were sighted? How would Beethoven's 9th Symphony be different if he had not lost his hearing? These are interesting questions to think about. We, as a society, are quick to point out the negatives of a person's disability; with a little effort, strengths can be seen too. Disability is a natural part of human diversity and should be respected and treasured. Thanks, David! PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 11/09/2006 04:30:00 PM 2 COM M ENTS LINKS TO THIS POST W E D N E S D A Y , N OV E M B E R 0 8 , 2 0 0 6 The New Member of Our Family Meet Kiki, our new puppy...born today...the breeder just sent us a photo of her. Finally, Henry has bitten the bullet and allowed us to get one for Adam. As an only-child myself, I am ecstactic for Adam. I grew up with three dogs (at different points of my life) in my grandparent's home. I took care of them whole summers, saw them every weekend. While I know I will have a new "baby" to take care for the next thirteen years, I cannot be happier. This makes me think of all that Adam has given me, including the courage to get a dog of our own. I think now of the lines my recent favourite children's book, You Are My I Love You, by Maryann Cusimano: "I am your favorite book you are my new lines I am your night-light you are my starshine I am your lullaby you are my peekaboo I am your goodnight kiss you are my I love you." PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 11/08/2006 05:07:00 PM 4 COM M ENTS LINKS TO THIS POST TUESDAY , NOVEM BER 07, 2006 We Are All People First A Credo For Suppport (Spoken Version) An Excerpt of a story written by a father of a Down's Syndrome girl: [at the birth of their child]"The masked pediatrician finished his sentence. Abruptly, he turned and left the room. Two nurses began to sob. I looked at Jonna. She looked at me. Thus began our wrenching, happy, challenging, humanizing, angry, crusading, broadening, rejoicing, proud adventure in parenting a child with a developmental disability. Over the past then years, we have learned that there is very little wrong with our daughter. but a great deal wrong with the culture into which she was born. As for so many other families of children with disabilities, our first experience was in 'medical' enviornment. It took us a while to realize that the 'medical' environment thinks about children with disabilities using a 'medical' model -- a model that teaches parents to think of their child as sick. Subtle and not-so-subtle messages tell parents to do everything they can to make their child more 'normal.' Several years ago, on the advice of a medical professional, we went to see a specialist who dealt with issues of growth. We were concerned that Elenor was too small, and we wanted to know what we could do to make her taller. In other words we wanted to subject her to growth hormones in an effort to make her look more 'normal.' What we learned was that she is in the fiftieth percentile for girls her age with Down Syndrome. How much more normal could she be?" --From The Perfect Daughter, by Michael T. Baily, from anthology: You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities. Autism has been around for hundreds of years. Only since 1943, and then again, not until 1980, did we pay attention to this "new" diagnosis, which is really just a better awareness. Luckily, as more children and adults become identified, we CAN produce better opportunities that understand the learning potential and abilities of every autistic person. Horrifically, society and parents who continue to insist their children are terribly ill, can continue to propulgate the fate that was once bestowed upon people with disabilities in the past: stigma, segregation and stereotyping and worse. PHOTO FROM THE DISABILITY MUSEUM: CHRISTMAS IN PURGATORY. If Dr.Wendy Roberts, the very person some of you stake your cures on says, "we will never find a cure for autism," then we should listen. There is no cure for many differences of the human condition. We must cure society of it's naivite and help our children get the supports and opportunities they deserve. We must invest in learning to understand autism even better than we do today, and we must consider how much society can drive science to appease our desperation. PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 11/07/2006 06:03:00 AM 1 COM M ENTS LINKS TO THIS POST FRIDAY , NOVEM BER 03, 2006 What Preys on Personhoods The press incite panic Pejorative parlance professes improper pedigrees and peadiatric pandemic of percentages and preseverations propogates parental paralysis of proper analysis and instead posits piteous epidemics that prey on personhoods. This from The Cornell Daily Sun (thanks, Steve)on the press and science: Every few years, a press release touts a breakthrough in autism research or treatment. The list of these discredited causes or treatments of autism includes secretin infusion, the MMR vaccine, chelation therapy and facilitated communication. Each of them has given parents false hope, or worse, false guilt. The researchers behind these press releases suffer from the most ethical of motivations: they sincerely believe that their conclusions are sound, they perceive a prejudice of the scientific establishment against these conclusions, and they sense an urgency to communicate their findings to the broadest possible audience of scholars and, more significantly, parents, so as to prevent autism’s ongoing tragedy. This well-motivated urgency often results in circumvention of peer review, the careful process by which scientific findings are vetted and judged worthy of presentation to the broader community. Despite its many faults and delays, peer review remains essential to maintaining public trust in science.