Saturday, May 31, 2008
I remember crying to my father in law (RIP) at my nephew's First Communion back in 2001. I said, "I don't think this will ever happen for Mia." Thanks to the wonderful folks at St. Theresa's Catholic Church in the diocese of Bridgeport and Miss June Venditti, special ed CCD teacher for 27 years, Mia's day has come. I hope my FIL is watching us from heaven. Boy, I miss him. One day soon I'll write a post about Mike Stagliano. He was something special.
Wednesday, May 28, 2008
THIS IS FROM www.AGEOFAUTISM.com and TOO COOL not to share here!!! Many of know John, after all!
What I'm about to write will be astounding to all of you, too good to be true to others and (sadly) heresy from some who'd prefer to keep autism treatment at a stand still. You ready?
How's this quote from John Elder Robison, Aspergian and author of the best selling, LOOK ME IN THE EYE, to whet your interest: "Science is making real solid progress to remediating some symptoms of autism." Let me repeat that: "REMEDIATING SOME SYMPTOMS OF AUTISM."
My version of the quote goes something like this: "Holy $#it! John, my tall Aspergian friend, is making perfect eye contact with me, he can read my emotions in my face and he is animated! How the heck did that happen?"
Let me back up for a second here. Last night I spoke at the monthly meeting of ASCONN, the Autism Society of Connecticut, greater Hartford region. Thanks to Beth Katten and Melissa DuMont for coordinating the meeting (and the taboo Wheat Thins.)
I was scheduled to present with CAMMIE McGOVERN who, like me, has a chapter in Embracing Autism. Cammie had a family emergency and couldn't attend. So I called my friend John Elder Robison. "John, what are you doing tonight? Want to come to Hartford?" I asked with my fingers crossed. "Sure! I'll tell the group about that new study at Harvard."
John is the master of understatement. That new study is testing Transcranial Magnetic Stimulation on several people with Aspergers and the results have shocked everyone involved. People who were unable to make eye contact, read facial expressions and empathize are suddenly able to do all three. Without losing any of their keen intelligence or in John's case, their wit.
I saw John last night for the first time since last winter. I can see real, physical changes in him. It's crazy! His voice modulates up and down. His facial muscles move more than they did, showing emotion. When we first met last spring, he told me he had trained himself to glance into someone's eyes every 30 seconds or so, just for a moment, to establish an appropriate social rapport. He had trained himself to do that. It wasn't natural for him. Last night, he looked straight into my eyes while we spoke without flinching. (Now that makes a girl feel good! LOL!)
There were at least two people in the audience who had met John and me last December at an event at Elms College, and they too were taken by the visible changes in John. One gal said, "You don't look at the floor when you speak anymore."
Yup, John Elder Robison has had some of the symptoms of his Aspergers reversed in a trial that is currently underway in the Harvard University Neurosciences lab. Here's the story:
The study is being conducted by Dr. Alvaro Pascual-Leone who is a Professor of Neurology at Harvard Medical School and Director of the Center for Non Invasive Brain Stimulation at Beth Israel Deaconess Medical Center. (TMS Lab) The tests are scientifically trackable and verifiable as eliciting real changes in the brain. Functional MRI proves it. The treatment is non-invasive and painless. My insufficient summary of the theory behind the study is that everything our kids/people with autism need to function is in their brain intact. But that our kids are running the "wrong software program" and thus are impaired. TMS allows the brain to run the proper software. In other words, our kids are NOT brain damaged and their wiring is just fine, they just aren't using the tracks they need to. And the proper tracks can be turned on!
After hearing of John's experiences, the scientists were stunned to hear other study participants describe new insights into their own emotional intelligence. One participant told of reading the emotional meaning in sentences for the first time, and another talks of "seeing what I'd been missing." Can you imagine the impact of that? It takes my breath away. It appears that the test subjects who have seen results are very pleased with their newfound abilities. In other words, losing some of their autistic traits has not diminished them.
Even better, the doctors never expected the results of this treatment to last more than a few hours at most! And yet, they are lasting far longer for John and the other participants. Currently, more than a month.
You can learn much more than I can explain at John's blog HERE. He expects this story to hit the mainstream media perhaps as early as this Fall. The testing is being done on verbal adults at this time. But the researchers will likely add more significantly impaired people as the tests progress. Perhaps including children at some point, if ethics allow.
I can't tell you how beautiful it was to watch John talk to me with full on eye contact. Not because I didn't enjoy my friend exactly as he was when his eye contact was fleeting. Not for a minute. But because he is obviously so pleased himself. I asked him, "So, what color are my eyes?" (He'd said that prior to the test he could not tell you people's eye color.) "Blue!" he said with certainty.
I'd like to thank John for allowing me to share his story here at Age of Autism. I've made a few changes to the original piece with John's input. Mark Blaxill is our science guy and now I know why. But I'll keep you posted on developments.
Here are some photos that illustrate the changes in John. The one below is the first time he and I met last Spring.
What do you think? See a difference? (Um do you think it's just me? I made him look so serious?) ;)
Kim Stagliano is Managing Editor of Age of Autism.
Wednesday, May 21, 2008
Autism One is a comprehensive conference where parents can learn about how to help their children (old or young) with autism from A - Z with an emphasis on T for treatment.
I'll be speaking on Saturday along with my colleagues from www.ageofautism.com Dan Olmsted and Mark Blaxill. I believe I'm also on a media panel first thing in the morning. And we're doing something for Spectrum Magazine on Friday, I think. My publicist has the details. Oh wait. I don't have a publicist. I'd better get on the stick and figure out my schedule, eh?
And I'll be meeting my fellow book-mates Dennis Debbaut, Stephen Shore and Robert Parish, the editor of Embracing Autism. We may be having a book signing. My very first!
From the A1 site:
Autism One 2008 Overview RECOVERY RISING
KEY INITIATIVES 2008
► Defeat Autism Now! Clinician Seminar, Thursday, May 22. For ten years Defeat Autism Now! has trained hundreds of practitioners around the country in the most effective, scientifically-based methods for treating autism. Now, the Defeat Autism Now! Clinician Seminar is coming to Autism One.
Defeat Autism Now! and Autism One are delighted to be working together to provide clinicians with the same great training to help care for the medical problems of children with autism.
The Clinician Seminar is a project of the Autism Collaboration whose mission includes identifying and implementing the most innovative ideas to help our children get better, faster.
► Advanced Parent Training, Friday, May 23. Not all children respond equally to all treatments. Some children improve dramatically with each intervention, some do not. Then there are children who progress and subsequently hit a roadblock.
If you are a parent or practitioner, Advanced Parent Training builds on your existing body of experience and knowledge to help you better appreciate a great number of factors to critically examine and potentially apply.
Parents continue to be the prime motivating force of the modern autism movement and parents should have the opportunity to fully understand and evaluate their best options and choices. Advanced Parent Training presentations provide you with the most intense education to help move your child to the next level.
► Amy Yasko, PhD, Symposium, Saturday, May 24. Dr. Yasko, a leading researcher, has developed many innovative ideas for testing and treating autism. She is also the best-selling author of The Puzzle of Autism: Putting It All Together.For more information about Dr. Yasko’s work, visit: http://recovermychild.com/Home.html.
Dr. Amy feels there is hope for everyone. Individuals up to 30-years old have benefited from her program.
In this special 3-hour symposium Dr. Yasko shares very specific biomedical information detailing many of her unique findings that help children and adults. Don’t miss this much anticipated public appearance.
PRE-CONFERENCE DAYS: WEDNESDAY, MAY 21 and THURSDAY, MAY 22. The Art of Special Diets - Wednesday, May 21: The “Art of Special Diets” Goes Global!
Enjoy the return of Autism One’s three Culinary Experts who will add an international flair. Join chefs Sueson Vess, author of Special Eats, Julie Matthews, author of Nourishing Hope, and Betsy Hicks, diet counselor of Pathways Medical, as they share tips, techniques and recipes that your family will love! Sueson, Julie, and Betsy will feature recipes from a variety of diets (including gluten- casein-free and the Specific Carbohydrate Diet) and nationalities to teach you how to deliciously customize the best diet for your child, yourself, and your whole family.
Special diets never tasted so good. Open your kitchen and heart to a world of possibilities. Mom’s Health and Happiness - Wednesday, May 21: Moms do everything to help their children. In the pursuit ignoring their health and happiness. Moms must be happy and healthy to enjoy their life and to pass that enjoyment to their children. Mom’s Health and Happiness explores and addresses questions of emotional and spiritual health, as well as everything you always wanted to know about your health but didn’t know who to ask. The day is devoted to healing your body, mind, and spirit from the inside out. The world can change in a day – make this your day.
First Responders - Thursday, May 22: This special day of training is suitable for law enforcement, fire rescue, public safety, emergency medical response teams, hospital ERs, 911 dispatchers, social services workers, and criminal justice agency personnel. The general public is also welcome. (Law enforcement credits are available.)Persons with developmental disabilities are approximately seven times more likely to come in contact with law enforcement professionals than others. The rising population of children with autism is coming of age. Adolescents and young adults will be less confined to supervised settings and increasingly more active in public places. Police and first response professionals will meet children and adults in field situations. 'Odd' behaviors by individuals with autism will promote concern and anxiety in an unknowing public and first responders.The Autism, Law Enforcement & Public Safety Training Day provides the knowledge necessary to recognize and safely and appropriately deal with these encounters.
Special Education Law Day for Parents & Professionals - IEP University – Thursday May 22: Advocating for your child is a complex and sometimes counter-intuitive process. In these sessions, parents will learn the basic concepts of special education law, the importance of strategizing and how to use this knowledge to gain control of their child's education. The primary goal of this track: Become an empowered IEP team member by gaining an understanding of special ed law, which then can be directly applied to their child's specific needs and situation.
Main Conference: Friday, May 23 - Sunday, May 25 Presentations in the main conference are divided into five tracks1. Biomedical Treatments2. Behavior / Education / Communication Therapies3. Complementary and Alternative Medicine4. Adolescence and Adulthood5. Government / Legal / Personal IssuesA LIVED EXPERIENCE
The Arts Festival Is proud to present a wide variety of art, from poetry to painting to the performing arts. It’s about life and passion and joy and celebrating the unique gifts our community brings to the world. Art inspires, finding form in each of us. Art is singular yet touches all of us.
Workshops and Roundtable Discussions Communication works best when everyone is involved. Lend your voice to the mix. The Workshops and Roundtables are intimate forums to thoroughly address a variety of concerns in an atmosphere of learning and discovery.
Mentor Mom Program Brings fellow parents to help guide you. The Mentor Moms will help you better understand the treatments and therapies as they apply to your child and be your 24/7/365 resource.
Be a catalyst for change at Autism One 2008.
Tuesday, May 20, 2008
There once was an agent named Snark
Who helped newbies get out of the dark
She retired (a sin!) and strode off with her gin
Just one more post please? What a lark!
Miss Snark, a NY literary agent who posted anonymously wrote her last blog entry one year ago today. Writers still turn to her blog BLOG for the straight skinny.
She terrified me! And intrigued me! And it was HER blog that made me realize that I could write a publishable book, land an agent and become a true writer. Her wit and sarcasm felt as comfortable as an old shoe (fire engine red stiletto, of course.) Her query crapometer and contests still have no peer. Behind the anonymity was a heart of gold and a mind and memory like a steel trap.
People went out of their way to "out" her. I don't know why. The fun of Miss Snark's being anon was that we readers could let our hair down and let the Snark fly. I said things on her blog I'd NEVER say on Agent Kristin's or Nathan Bransford's blogs. Anon or otherwise. Miss Snark gave us writers a place where we too could become fictional, if only for a moment.
So, Miss Snark, what do you say? Fire up the old kitchen extinguisher one more time? Gulp a double Bustelo (I genuflect when I pass this brand of coffee from her favorite bodega in my local store) and give us ONE MORE POST??? Please?
Monday, May 19, 2008
I urge everyone who knew Miss Snark to visit Pat's blog on May 20 and leave a message. It will get through.
Please pass the word along.
Sunday, May 18, 2008
Thursday, May 15, 2008
Dear God in the morning. I was standing at the end of the driveway with Miss Mia waiting for her school bus. I picked up the New York Times. The cover photo nearly knocked me over. Mother and Dad tending to the body of their 8 year old daughter, who was killed in the earthquake. They married late. They have one child, as is required in China. A daughter. They kept her. And now they've lost her. Imagine how many families are grieving the loss of their one precious child.
Why does this tragedy seem to affect me more than others? Maybe because of the children? I don't know. Yesterday I was very down in the dumps. Today I'm the luckiest woman on earth with three kids who will toddle off the school bus later today and whether they can say hello, can't say hello doesn't really matter.
Tuesday, May 13, 2008
Dr. Bernadine Healy knows the inside truth on autism and vaccines and the lack of studies by our gov't and has no reason to lie.
I realize I sound like a tin foiled hatted conspiracy theorist to those of you outside of the my quadrant of the autism world, but Dr. Bernadine Healy, former head of the NIH is a reliable source. And since she's no longer on the gov't payroll and her husband is retired as the head of the Cleveland Clinic, she is free to speak her mind. And her conscience. The government knows autism (some? most?) and other brain damage is caused by vaccines.....
I tuned in this morning to http://www.abcradio.com/ to listen to Don Imus live. Dr. Bernadine Healy, former head of NIH and Sheryl Atkisson from CBS were on to discuss vaccines. From today's program:
Sharyl Attkisson reports: CBS was tipped off to cases as far back as 1991 where the gov't is paying families for brain damage for vaccine cases - the gov't is not tracking which of them would be called autism. Healy was shocked.
Points brought up by Dr. Healy:
The Poling case is so important.
The principle of herd immunity drives vaccine thinking because of that there's a fear in public health community that people will stop getting vaccines.
Public Health officials feel: We are challenging something too important let's not do the studies or the science."
People would be surprised to know there are over 1300 cases awarded by vaccine court. We need to study that. The science hasn't been done.
The research on this (mercury in vaccines) is scant. NIH study in primates showed ethyl mercury left more mercury in the brain.
We're afraid to do the research.
Sheryl Attkisson talking about Dr. Healy.
Poling case piqued Healy's curiosity.
She realized that we weren't getting the full story for the last decade.
She had a sense of outrage.
Medical voices saying the same thing and easy to paint them with the same brush. When she says something like this agreeing with people are are considered off center it means something.
CBS news was very interested in pursuing any story that has merit and value and people would be interested.
No causal evidence. Dr. Healy pointed out that doesn't mean it doesn't exist.
She believes they (gov't) haven't looked because people would stop vaccinating.
Vaccination doesn't have to be all or nothing. There's something in between if you can identify if there are susceptible children.
Dr. Healy expressed herself as very pro-vaccine. She was surprised about things (studies) that haven't been done. Like on self-selected kids in the vaccine court. Find things that make them susceptible so side affects from vaccines.
CBS was tipped off to cases as far back as 1991 where the gov't is paying families for brain damage for vaccine cases - the gov't is not tracking which of them would be called autism. Healy was shocked.
Monday, May 12, 2008
Ah say! Ah say! Did the foormah head of the NIH say we need to, I say we need to look at vacciiiiines and autism? Ah say, that's craaazy talk!
We'd like to see how the Offits, Tayloes and Gerberdings attempt to impugn "loudmouth" Dr. Bernadine Healy who says, "the government has been too quick to dismiss the possibility of a vaccine-autism link" in THIS CBS report by correspondent Sharyl Attkisson.
Today, a second round of autism test cases begins in federal vaccine court. Tonight on the CBS Evening News, we'll have exclusive interviews with the two families who are bringing the cases: two of nearly 5,000 autism cases that have been filed in this special court. The government and many scientists have consistently maintained for more than a decade that there is no link between vaccines and autism. The Institute of Medicine issued a report in 2004 that was intended to put the controversy to rest, saying that the weight of the body of scientific evidence does not show a causal link between vaccines and autism. However, other scientists and parents disagree.
For our report, we interviewed Dr. Bernadine Healy, the former head of the National Institutes of Health and a member of the Institute of Medicine who breaks with her colleagues in this exclusive CBS News interview: Dr. Healy says the government has been too quick to dismiss the possibility of a vaccine-autism link, and that it should be explored with renewed vigor.
Sunday, May 11, 2008
Wow! My husband bought me a book for Mother's day! Two! One is Janet Evanovich's first three Stephanie Plum books in one hardcover. Love it. Of course, I've read all three books umpteen times. First as an avid fan and lately as a writer. But it's a treat to have them in one safe place on my bookshelf, all nice and clean. My originals are a bit worn by now!
The second book is by Rosemary Harris, who happens to live in Fairfield County (and Manhattan) where I live! Her cover art is fabulous (those daisies look oh so Picasso!)and I'd have pulled this book off the shelf and bought it myself. Is Mark great, or what? Oh, I also got some girly Lavender shower stuff from Blue Tulip. Very nice. I never buy myself that kind of stuff. I'm a real un-girl that way. So it's a treat to have some lovely potions with which to pamper myself.
Rosemary's website has a nifty "What are you" ditty for flowers. Check mine out - completely accurate. I've never been a sweet pea or a rose or a shrinking violet. Snap dragon? Oh yes, that's me!
The melancholy and sense of loss of a woman who had a miscarriage and instead of holding her baby is holding her head in her hands. The unbearable grief of a woman who has lost an infant (I emailed with a woman last night who lost TWO of her triplets, the third has autism - blame mitochondrial disorder. I can not get her out of my mind. I am not a cyberhug, touchy feely kind of gal - but I would love to hug this woman and tell her how very sorry I am for her loss.)
The panic of a the woman who sees the destruction of war around her and wonders if her children will survive. The disbelief and determination of the woman who sees the waters take over her village and must search for food and clean water for her children.
Happy Mother's Day.
Thursday, May 08, 2008
Spring is here at ASCONN and we have more events and activities for you and your family as the weather gets nicer.
Join the Hartford Region on Thursday, May 27 from 7:00 p.m. - 9:00 p.m. at Jewish Family Services, 333 Bloomfield Ave, West Hartford for "Embracing Autism: Sometimes it's easy. Sometimes it's not!" with Kim Stagliano and Cammie McGovern - parents, authors and autism advocates.(rescheduled from Tues. April 29)
Kim Stagliano is a writer, Huffington Post blogger and Managing Editor of AgeofAutism.com and mother of three daughters with autism. She lives in Fairfield County with her husband and the girls. Kim will read from her chapter, "Three Special Kids. No Apologies Necessary" from the new book, "Embracing Autism. Connecting and Communicating with Children in the Autism Spectrum" and then open the discussion to the audience.
Cammie McGovern is a novelist, ASD activist, and mother of three. Her oldest child, Ethan, carries a diagnosis in the autism spectrum. His 'difficulties' have inspired a novel and the founding of a resource center called Whole Children, which runs after-school classes and programs for children with special needs. Cammie will read from her excerpt "The Freedom to be Odd," from same book.
Call Beth Katten at 860-236-8374 or e-mail for more information and to register. For more information visit http://www.asconn.org/.
On Fridays they play a replay of old shows dating back as far as 1988 as far as I've heard since the replays started. The host? Sir Harden Thicke. Get it? So Beavis and Butthead! So, Howard Stern, I know. See, I'm not all speech therapy and mosquito nets.
Tomorrow they are airing the bit that was voted #1 of every bit they've ever done. COOKIEPUSS. It's when Fred buys his Mom a Carvel cake. If you live in the NE you know Carvel - Tom Carvel used to do his own ads with a voice that sounded like a gravel pit. For Father's Day you bought a Fudgie the Whale cake. End of story. Flying Saucers? The best cookie sandwich with ice cream ever. Carvel is an institution. When I lived in Ohio (insert tiny shudder here) a Carvel opened up. One of the first in the state. I banged on the door - the place was closed. "LET ME IN!!!" I was SO excited to see my old ice creamy favorites.
Monday, May 05, 2008
How fun is it to meet a Blog Buddy!? This is Dallas Girl. She worked with my husband at that company that no longer employs them. (Ahem.)
She has shiny, straight blonde hair. And is a decade younger than I am. Slept in until late morning yesterday (she has two tots back home.) And is from Texas. And yet I like her. Go figure!
She was in NYC with her delightful hubby (shout out to TV Joe from WFAA Dallas) and kindly invited Mark and me to dinner together HERE in Chelsea. Dinner was so fine I even ordered dessert. Also fine.
Dallas Girl blogs HERE. Thanks, Amy and Joe!
Saturday, May 03, 2008
You have got to read THIS post over at John Robison's blog about brain plasticity and some science-fictionesque research he's been participating in at Harvard. Crazy, insane, you'll never believe it kind of stuff that could change the world for millions. Millions.