My son Jackson is 14 years old. In his 14 years, he has learned very basic communication. I want (rice) milk. I want chicken. Push me (on swing or stroller). He can use a device to say these things, but he can speak them too. Those who know him well can usually understand. When he can’t be understood, the device helps.
Besides having autism, Jackson is medically complicated. He has had multiple surgeries, hospital stays, and medical issues. Jackson has a seizure disorder, colitis, chronic allergies, chiari malformation, low growth hormone, kidney surgery, a weakened immune system, and more. He is no stranger to medical professionals. Because he cannot effectively communicate, it is always a guessing game trying to figure out what is wrong. Usually a fever or behavior outbursts are the tip off. By the time we know what it is, it is usually pretty bad. Not knowing what is wrong with Jackson, if/when/where he is hurting, is one of the most difficult aspects of his autism. The heartbreak that comes along with knowing that my son is suffering and cannot tell me-- it can be unbearable. I am his mother, my job is to take care of him. When I don’t know what to do I feel like I have failed him.
We have tried for many years to teach him how to articulate pain. His speech therapists, his special education teachers, my husband and I-- we have all tried countless ways to teach him to alert us when something is wrong, with little progress. It is so hard for him, as is for many individuals with autism, to express something that can be so abstract.
Yesterday, Jackson was in a great mood. Happy, laughing, all I could ask for. When Jackson is happy, everyone is happy! It is January, and the New York weather makes it difficult to keep him occupied. He doesn’t like to be out in the cold, and so weekends are hard. I asked him if he’d like to go for a ride in my car, just to get out for a little. He got his sneakers, and then he replied with something I wasn’t sure I understood. I handed him my phone so that he could type it for me. This is what he wrote:
Readers might recall that in September of 2013, Taylor Hawkins, rock star member
of Chevy Metal and Foo Fighters generously donated a concert to Age of Autism and Generation Rescue on behalf of his nephew, who has autism. Here's a Rolling Stone article about the concert.
...Last night's cause is particularly important for Hawkins, who volunteered to perform at the Generation Rescue benefit as a way to help his family. "My sister-in-law and my brother have a child that has autism and they just moved down here from the San Francisco area," he explained. "I said to [my sister-in-law] a few months ago, 'You were really involved up there in the whole autism community. Now that you’re down here, if you want to get to know some of these folks, I’ll offer up Chevy Metal for anything. Read more: http://www.rollingstone.com/music/news/taylor-hawkins-chevy-metal-plays-intimate-autism-benefit-in-l-a-20130929#ixzz3sk5yT5GF
Below is a very cool Thanksgiving message from Taylor and a donation request to cap off our November matching gift donations drive. Remember, your donations are now tax deductible! Use the PayPal button on our site or send a check to Autism Age (legal name) 102 Whittier Circle, Falls Church, VA 22046.
And a huge THANK YOU to Taylor Hawkins, and our good friend, Tara Hawkins for making all of this happen.
AotS Kicks off Foundation Launch with Holiday “Fun”draiser in Partnership with Fat Brain Toys – Campaign Gives Back to Special Needs Organizations & Families
Autism Society of America is First Special Needs Organization to Participate in Fundraiser
SHELTON, CT (October 29, 2015) ̶̶ Autism on the Seas (AotS), the leading travel organization catering to vacationers with autism and other developmental disabilities, announced today the launch of the company’s non-profit arm, Autism on the Seas Foundation. The foundation is designed to financially assist families wishing to vacation on an Autism on the Seas’ staff-supported cruise.
As part of the launch, AotS Foundation is partnering with Fat Brain Toys, to offer a special Holiday “Fun”draiser, which will give Special Needs organizations an opportunity to drive donations through the sale of Fat Brain Toys. Participating organizations may be selected by anyone making a toy or game purchase, which will result in a 10% donation back to the organization and a 5% donation to AotSF on every toy sold between October 29 and December 19, 2015. Grand Prizes, including cruise vacation credits totaling $10,000 towards an Autism on the Seas cruise, will be awarded by AotSF to the top selling families by December 31, 2015.
“Since we launched our company in 2006, our mission has been to make vacation dreams come true for a large population of overlooked travelers – families with children or loved ones with special needs,” said Mike Sobbell, founder and president, of Autism on the Seas. “With the launch of our foundation and our kickoff fundraiser, we can help make dreams come true for families that want, need and deserve a vacation, but can’t manage it on their own financially.”
AotS Foundation & Fat Brain Toys Holiday “Fun”draiser
In addition to helping Special Needs organizations and advocacy groups raise money and the spirits of their members with a Holiday “Fun”draiser Contest, the AotS Foundation will earn a 5% donation on all toy sales from Fat Brain Toys that will further the Foundation’s ability to provide financial assistance to families wanting to take an Autism on the Seas staffed cruise.
Note: This post needs little introduction beyond the email from a Mom who wanted to share her daughter's success with the Rapid Prompt Method with all of us. Some of you might say, "Oh that RPM is hocus pocus and the work of a guided hand." I can promise you that RPM can absolutely unlock the voice, the thoughts, the intelligence of our kids with autism because I have seen two of my own children blow my mind while working with Soma. And while we have not had the smashing success Katerina has - and I blame only myself for that - I know that my preverbal and partially verbal daughters are bright, thoughtful and fully engaged in the world thanks to Soma. Learn more about her work at HALO.org. And thank you to Hildy and Katerina Gogal! XOX Kim
Dear Ms. Stagliano
I am writing on behalf of my 11 year old nonspeaking daughter, Katerina. On November 18, 2014 we discovered a technique to unlock our daughter's voice, the method we used and are stilling using is Rapid Prompting Method (RPM). Through RPM, we discovered a brilliant girl who has been trapped inside of her body unable to communicate and/or show the world her true potential. With RPM Katerina is finally able communicate her thoughts and show the world how intelligent she is.
A child that was doing preschool academics (unsuccessful I might add) less then a year ago is now doing grade level academics and has expressed a strong desire to become an advocate for nonspeaking children. Her writing is her avenue to advocate and is also therapeutic for her. She is hurt and disappointed in the world for treating nonspeaking children as though they have no potential. A child that was once perceived as having minimal receptive and expressive language (through AAC devices) is now a fluent writer and she has some amazing things to say!
Below is a story she wrote, please consider publishing it and help her advocate for nonspeaking individuals.
Please do not hesitate to reach out to me if you have any questions or concerns,
The Voice by Katerina Gogal
Once upon a time there lived a girl named Katerina. She was very beautiful and so sad, no one could communicate with her because she had no speech. Katerina's voice was trapped inside her head. She was brilliant but everyone treated her like she was stupid. Not having speech was harmful, she was perceived as not having any language, oh how wrong they all were. Language and speech are not the same! Katerina developed such anger, so many insensitive cruel people said such horrible things about the girl in front of her, thinking she did not understand. People who were suppose to educate the girl did not believe she had any potential. Such a sad life the girl had and oh how lonely. Imagine a world where you have no one but yourself to connect with, how many people could survive? Katerina did. Katerina learned to communicate her thoughts through RPM. Some people still doubted her, fools. RPM gave Katerina the strength and drive to find a voice. She yearned to find a way to show the world how smart she was. She needed speech to show them. On Halloween night, Katerina woke up with a brilliant plan, she was going to make a magic potion that would allow all the words in her head to spill out of her mouth. She jumped out of bed, lite a candle for some light and scrambled around her bedroom frantically for her book on magic potions. Where did she last see it? Yes, under her bed! Katerina pulled out the book and turned to the drink some speech potion page.
"Appleseed Ventures is a parent-driven enterprise. We employ autistic teens and young adults to assemble and package Aquaponic Waterfall Gardens. It's a gateway to a future that works."
If you were fortunate to hear Dan Burns this weekend at the Generation Rescue Autism Education Summit, you learned about his parent-driven initiative for employment of adults on the spectrum. Called Appleseed Ventures, the product they offer is a fantastic aquaponic growing system. And Dan is generously giving a system away to a lucky AofA reader. Imagine growing fresh herbs year 'round in your kitchen! And you can buy small fish to decorate the water with their color.
Leave a comment to enter. Learn more at Appleseed Ventures.
Save the date! September 25 - 27 in affordable, sunny Dallas, Texas. Visit the the AES site for details. Registration is just $79!
Join NFL star Ryan Neufeld for a Dad's Huddle bringing fellow Warrior Dads together to kick-off an evening of hope, insight, and support for fathers of children with autism spectrum disorders.
Come meet fellow warriors, conference-goers, doctors, speakers, and exhibitors. Refresh with a drink while you connect. Attendees will have a chance to win a front-of-the-line pass to Saturday's Celebrity Signing.
By Dan Burns
Appleseed Ventures is a cottage industry serving ASD families. We are beginners on this journey. Our first product is an indoor waterfall fountain for sleep. The enterprise could become a hub leading outward to various paths such as seed pod kits (sold by subscription), “Cooking with Healthy Herbs” cookbooks and videos, blogs, retreats, seminars, a YouTube channel, and many more microenterprises beyond our ken. We hope to model parent-created enterprises for other organizations, sharing our successes, failures, and lessons learned. There's far more to do than we can do alone.
See our website at www.AppleseedVentures.com. The site is under development.
Hope to see you in Dallas at the autismeducationsummit.com , where we are a featured exhibitor.
Two stories were in the news yesterday with a compelling juxtaposition, but the same theme. Autism and wandering. While a 5 year old Michael Bolden wandered away from his father during a shopping trip, found water and drowned, another family was blessed with a happy ending.
My children are creatures of habit, that's a big part of their autism. Perhaps yours are too. Randy Marney of Springfield, MO did not run away or wander or bolt, he simply stuck to his routine and boarded the weekly bus to Church. Knowing he was A-OK, I have to say this story made me smile. I could see one of my own daughters doing this same thing. "Bus comes? I get on the bus!"
The Pastor did not know his Mother was unaware he was going to Church alone. Educating those who care for, work with, teach our kids is as important as educating our kids themselves. Next Sunday, I'm sure the Pastor will wait for Mom to wave from the doorway. Thank God Randy came home safely. From KY3 News:
8-year-old Randy Marney apparently went to church on Sunday and didn't tell anyone. His mom, Lisa Roberts reported him missing at about 9:40 after one of her other children woke her up and said Randy was gone from their home in the 1700 block of W. Olive St. in Springfield.
Is recovery from autism possible? Does an autism diagnosis have to mean “GAME OVER?” With answers that will amaze you, I Know You're In There by Marcia Hinds is a story you don’t want to miss:
Ryan was a young child who was severely affected by autism. He was in the third percentile for speech when he entered kindergarten and had to be taught how to smile. The “experts” said Ryan would need to be institutionalized… but they were wrong! Ryan is now an engineer at a major aerospace company and none of his colleagues would ever guess that he was once diagnosed as autistic. He is now thriving in a way no one ever imagined would be possible, and I Know You’re In There shares his incredible journey.
About the book I Know You're In There: Ryan’s parents realized something was not right with their son. They knew it before the psychiatrist predicted Ryan would end up in an institution. The autism diagnosis ripped away every dream these parents had for their child.
The Center for Disease Control (CDC) now reports, “...1 in every 50 school age children has autism.” The number of children diagnosed continues to grow in epidemic proportions. Ryan was stranded on Autism Island and his family was stuck there with him. There was no recovery from autism. There was no cure. There was no hope. Or was there?
“Our story has a happy ending, but how many parents are still told there is no hope for their children? And how many kids will not get better as a result? My family never gave up on me because, like the title of this book, they knew I was in there. When experts told them I would never be okay and probably end up in a group home, they still didn’t give up. As a result, I was able to leave my autism label behind.” –Ryan Hinds
Please enjoy this uplifting article from the Morris County (NJ) Daily Record to launch the new year at Age of Autism. Sisters Jenny and Flora Rose are the daughters of AofA contributing writers Dr. Jonathan Rose and Dr. Gayle DeLong. Their posts include:
Book Review: Vaccine Nation: America's Changing Relationship with Immunization
The Amazing Spider-Man: The Animal Farm of the Autism Epidemic?
The Lesser of Two Evils: Breast Cancer and Autism
Sibling Perspective: What Autism Awareness Month Doesn’t Mean to Me
Progress and recovery are possible with hard work and yes, a bit of serendipity. We're delighted to celebrate the Rose girls' succecss.
Read the full article at the Morris County (MJ) Daily Record.
Ten years after their journey began, a Morris Township family plagued by a growing global health crisis — autism — has made remarkable progress on an unconventional path.
Jennifer Rose, 18, has improved more than her sister, Flora, 14, blossoming from a quiet child who struggled to speak and make friends to a Drew University freshman who dreams of being a writer and actor.
She's already started on a book that she hopes will inspire other kids of all abilities to overcome challenges and realize their own ambitions.
"It's called '50 Life Lessons: The Ups and Downs of Being a Teenager with Mild Autism,' " Jennifer told the Daily Record during a recent family interview. "I've written several chapters."
Her parents, Jonathan Rose and Gayle DeLong, still worry about their kids, as all parents do, but are encouraged by the progress they have witnessed since teaming with Stuart Freedenfeld of Stockton Family Practice in Hunterdon County a decade ago...
(NOTE: Thanks to many readers who have donated from $5.00 to $500, we're on our way to our matching gift goal of $5,000. Plus your donation to Age of Autism is now TAX DEDUCTIBLE. Please help us meet this wonderful $5,000 matching gift opportunity. Thank you.) From our wonderful benefactor who is matching your donation:
Thanksgiving is just around the corner, and this holiday always provides a wonderful opportunity to take stock of the many things for which we are thankful. One of the things on my list again this year is The Age of Autism blog. If you are reading this, there's a good chance that you, too, are very thankful for AoA, which just happens to be the leader in covering all things Autism, including its link to vaccines.
To that end, please raise your hand if:
We had to share this touching story with you. Wayne Rohde, author of the newly released book The Vaccine Court posted this Facebook status a week or so ago: My son Austin will be graduating from high school in 2017. Both boys should be graduating, but since Nick won't be graduating, Austin is honoring his brother in another way. Look at how Austin designed his senior ring.
You could tell Wayne (and Austin) how much you "like" that status by purchasing Waynes book... checkout the website here.
“Autism shakes up your world. It has changed my life and I wasn’t even the one diagnosed with it. My brother’s name is Ethan Wolfgang, but we call him Deets. He is one of the greatest gifts my family has ever received. And one of the most challenging.”
So begins Zack Peter’s memoir of his family’s struggle to cope with his brother’s autism. And thus began Peter’s mission to ensure that his brother will one day live an independent life. He candidly describes his attempts to get his family on board with Ethan’s biomedical treatment and his fight against their reluctance. He relates how his life changes when he comes up with the idea of hosting a local fundraisers, which then throws him into the world of activism. He describes how this leads to his becoming a full-time advocate for autism. As everything in his life becomes more and more centered around “the spectrum,” Peter faces the personal struggle of being a voice for the cause while trying to maintain his own identity. Sharing the wisdom he’s learned in a voice that’s equal parts snark and heart, Peter offers a memoir that’s as funny as it is poignant, filled with no-nonsense advice and what he calls “The Hope Rules,” which are designed to help preserve sanity, dignity, and the will to stay strong.
Whether you know someone with autism or not, Zack Peter’s refreshing take on his life as a sibling and activist serves as inspiration to persevere, even when the odds seem impossibly long. It’s everything you need to help keep your head up…like the bottom of your glass.
Jenny McCarthy calls it, “Heartwarming, inspiring, and shockingly funny!”
Win a FREE copy of A Shot of Hope, signed and personalized by Zack Peter! Leave a comment below and let us know, what is your shot of hope?
Tweet Zack at @JustPlainZack using #ShotOfHope to double your chances at winning!
A Shot of Hope: Real Wisdom from a Real Sibling Warrior Providing Real Hope for Autism is on sale now.
Find a bookstore near you:
On October 4, 2013, Avonte Oquendo eloped from his autism school in Queens, New York and vanished into thin air. His remains were found in January, in the icy waters of The East River.
Avonte was just one of many children, from tots to teens, who has died as a result of his or her autism. Safety is of paramount important in our community. There are orgs trying to promote safety, encourage programs and spread the world that autism is indeed deadly - from the outside in, which is to say, every bit as deadly as some cancers.
Our friends at National Autism Association are leading the way in safety with their Big Red Safety Box program. That program is currently "open" for families to apply for a FREE safety kit. Kits are available on a first come, first served basis and include:
1) Our Get REDy booklet containing the following educational materials and tools:
A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter
A Student Profile Form
2) Two (2) Door/Window Alarms with batteries
3) One (1) RoadID Personalized, Engraved Shoe ID Tag*
4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband
Click HERE to apply for a kit or to make a donation to this life saving program. Thank you.
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve
As far as I am concerned every child or person with non- verbal or low verbal autism is a hero. It’s difficult to imagine what they deal with every day. At an IACC meeting in the summer of 2013, Portia Iverson gave a presentation about this non-verbal group of the autism population. She had a big pie chart to help the committee see how many children may not have functional speech in the US today. Unfortunately she had to make a stab at the numbers because for some reason there is no data being collected on this. The safe estimate was 750,000 people in this country with limited expressive speech.
Well thank God for Soma Mukhopadhyay and RPM. She created a life changing solution to the problem. Now if we can just make it accessible to everyone who needs it and stop whatever it is that is causing the tragic loss of speech.
Here is a short film made by my son James and four other teens about about their autism and how their life has changed since they can communicate meaningfully through Rapid Prompting Method. It is called the “The Power of Words”.
An amazing woman by the name of Melanie Hamilton Baldwin changed the face of autism and cancer culture by telling her story to thousands as "Booty Kicker" in the Thinking Moms' Revolution's book Autism Beyond the Spectrum. Having once beaten breast and bone (hip) cancer; she now suffers liver, spine, and bone cancer in her other hip. For anyone who knows Melanie, two words come to mind. "Faithful" and "Godly." As she struggles to overcome her current issues, her severely affected son Luke, still requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism. Please consider donating generously to help her family care for Luke as she regains her health, and please help their family establish financial security that will help them thrive during her absence.
DONATE HERE NO AMOUNT TOO SMALL.
By Kim Stagliano
This is my daughter Mia. She is 19 years old and just finished her fourth year of high school. Next Fall she starts in a new program within our district called Trac21. This is a pilot program, the first in our area outside of private autism schools, to serve the autism population in their "gap" years between traditional secondary school and aging out at age 22.
Our Special Education department recognized early on that the "regular ed special ed" post grad program, called "Elite" in our town, was not going to work for the autism population. (Yet another example of the newness of the epidemic in the last twenty or so years. There are almost no housing or work programs specific to autusm.) First off, it is an itinerant program. The students meet in different locations every day of the week. Second, it is primarily vocational in focus with emphasis on the job sites where you usually see people with disabilities, like stocking shelves at retail and working in a grocery store.
I was on a committee that ate Dunkin Munchkins and drank coffee for two solid years in an effort to find a site for Trac21, plan vocational locations and craft a meaningful day for the two students who would be part of the 2015 school year. 23 months into planning, we had a pilot program. Mia will have almost a full school day, with academics in the morning, vocational work, life skills training and the familiarity of a room within the high school near friends and staff she already knows and trusts. Overall, I'm pleased.
By Jennifer Rose
Well, we've said goodbye to another long April, aka Autism Awareness Month, which has done about as much good for autism as the Spice Girls have done for feminism. If it were more like Breast Cancer Awareness month, which actually does care about people with breast cancer and is about more than “awareness,” it wouldn’t be so bad. Autism Speaks has become notorious for trying to cure autism. But, they also want to make autism look like a “gift”. They also tell us to “Light it Up Blue”- what does that accomplish? Can you say “contradiction?”
Don’t get me wrong, I don’t mind causes making autistic people feel good about themselves…as long as they don’t treat autism as “alternate thinking”, or worse, a “gift.” It’s only a gift if it inspires people to think outside the box and be more creative. Some famous creative minds may have been autistic (Tim Burton, Andy Warhol, Lewis Carroll) though that’s only speculation. And I found it very sweet for Jodi DiPiazza to sing with Katy Perry, and for Alexis Wineman to overcome autism to become Miss Montana that same year. (I’m also pretty envious of both girls, though Mom and Dad say that I’ll be doing so much more work with autism.)
If they were all Jodi DiPiazzas and Alexis Winemans, it would be easy. However, autism is not a “one size fits all” diagnosis. There are many kids who struggle to get a word out, like my sister. However, autism coverage in the media is a lot like “missing pretty girl syndrome.” If you’re cute, pretty, and “marketable” (read: sugary sweet), you get coverage. Unfortunately, this not only leaves out kids who are severely affected, but also kids who have recovered, like me.
Last September, the mother of cheerleader Keely Pettingill announced that she had recovered, but the media didn’t report that. Her mother was pretty ticked about that, because she wanted a recovery story. She had been told that her daughter would end up in an institution, and she was like “Yeah-college!” My father said “At the next Congressional hearing in November, we have to have a panel of recovered kids.” Thanks, Dad! Too bad Congressman Issa had to cancel.
Recovered kids? Are you serious? Kids can’t “recover” from autism, don’t be silly! If it ain’t broke don’t fix it! Man, do I wish people will wake the hell up, because it is a disorder, not just a difference. If people out there stopped seeing homosexuality as a disorder, and autism as just a difference, and instead thought the other way around, we’d be living in a much better world.
I even wrote a poem last March, about “what I would do to help the world”:
If I could change anything about the world…
I would help kids.
Goodbye April, HELLO HOPE!
Have plans Friday, May 9th? Want to have a great time and help raise money for Generation Rescue?
Then come to the 7th Annual Rescue Our Angels event in Chicago! My husband and I are so honored to have been asked to co-host this incredible event founded by parents Michele and Peter Doyle, and we would love for you to join us! After their little girl was diagnosed with autism in 2006, the Doyle's started the Rescue Our Angels benefit to help raise money for autism families in need. Over the last six years, the event has gone from a small, intimate gathering to a star-studded extravaganza that has raised almost one half of a million dollars! Tickets are still on sale, but are going fast. Get yours today! We hope to see you there!
The Focus is on the Transition to Adulthood – Teens Need to be Better Prepared
Register FREE Here!
Irvine, CA: Moms Fighting Autism and Autism College are partnering up to offer a free virtual conference on Saturday April 26th and Sunday April 27th from 8:00 AM to 5:30 PM PST. This year’s theme is: Autism from Adolescence to Adulthood, Preparing for Independence and Growth. Keynote speaker Chantal Sicile-Kira, author of five award-winning books on autism, will be speaking on Preparing for the Transition to Adulthood. Speakers include: Brian King, author of Strategies for Building Successful Relationships with People on the Autism Spectrum, who will speak on “Building a Support Community for Interdependence and Growth;” Wendy Partridge, Executive Director of Heroes of the Game, Inc., speaking on “Work Incentives Planning and Assistance – Taking the next step on your Employment Journey”, and Marguerite Cohn, Transitions Program Supervisor of the Rebecca School in New York.
"The transition to adult life can be a rude awakening for parents as well as the young adult," said autism expert and founder of AutismCollege.com, Chantal Sicile-Kira. "The unemployment rate for adults with autism is very high, and we can do a better job of preparing them during their school years. Listening to these speakers is a great way to get empowered with the information parents need to know."
By: Inas Younis
Its takes strength to hold on, but it takes even more strength to let go. But I am a mother and I could only do what came naturally, and so I held on. I held on as tight as I could without hurting him. I held him when he tried to jump out of moving cars. I held him when he tried to attack the neighbors. I held him when he tried run out into streets. I even held him as a form of therapy known as holding therapy. And although he is now gone, I am still holding on, and I just don’t have the strength to let go. Whoever said mothers are strong, did not really understand the meaning of strength.
But now the time has come. Blinded by tears, and deafened by an inner voice which keeps reminding me that mothers never give up on their children, I am going to let go. But before I do, I must throw myself before a jury of my peers and ask for their forgiveness. I know what you are thinking, only God can forgive me. But I don’t need forgiveness from God, for he has been on and by my side since day one. He was there while I screamed and cursed at the heavens for making my son autistic and epileptic. He was there when I begged for a miracle every day for ten years straight. He was there for the countless sleepless nights when my son screamed in pain. He was there when my son had his first seizure. He was there when I had my first panic attack. He was there then, and he is here now. I don’t need his forgiveness, for there is no sin in coping. And I do not need forgiveness from my fellow man, who was completely oblivious during the beatings, the fecal smearing, the screaming, the property destruction, the insanity and horrors of my life which I hid from their innocent eyes and ignorant hearts. No, what I need in order to let go, is forgiveness from a jury of my peers. A jury of mothers who have suffered some measure of the horrors I have for the last sixteen years. For only they can understand, and not because they have been through it, but because many of them are still going through it. They are my heroes, and after you hear my story, they will be your heroes too.
So please allow me to plead my case , starting with the most obvious defense. I tried everything!
Was I aggressive enough with his therapy, his special diets, his medications, you ask? Well let me see if I can remember, because as most of us mothers with special needs children know, we all suffer from a bit of amnesia. It’s our brain’s way of dealing with trauma. I think there is an acronym for it called PTSD. The world of autism is full of acronyms. There is GFCF, SCD, ABA, ASD, IDEA, ESY, and my all time favorite, WTF. But luckily, I kept very detailed journals, so no worries. Of course at the time, I kept them because I was trying to decode the mystery of autism and in my case severe autism. I micromanaged his every bite of food, supplements, medications, and therapy in an effort to isolate cause and effect and determine patterns of behavior. But no patterns emerged except for one; I was going crazy. I submit to the jury the following Journal entries.
October 2003: I am in autism hell, which right now means hiding out in my bathroom while the devil has his way with my son. According to my notes the only thing I introduced in the last couple of days to his supplement protocol is an orange flavored fish oil. Therefore, no more orange flavored fish oil. Note to self: use alternate fish oil. To do list: email the following fish oil companies until I find the purest fish oil known to man.
It has been almost one year since our son James had the opportunity to use the RPM method of communication with Soma Mukhopadhyay. James is verbal but not conversational, and his speech is best described as being very “unreliable” as well as hard to understand. James has gone from almost no real communication to total communication in 6 months.
Needless to say it has changed everything for him and for us. I tell people it is bigger than marriage, childbirth or winning the lottery. It seems as though every day we learn something really big about James and his heart and mind.
When I first realized that a lot of what we thought about James was wrong, I called Dan Olmsted. Over coffee I told him, “I think mercury toxicity creates silent geniuses.” I’ve always been certain that thimerosal and my dental amalgams caused James’ regressive autism and I am now fairly certain that a huge percentage of children or young adults with autism are not intellectually disabled, not even learning disabled, but so severely sensory-motor disabled they can’t show us.
We thought James, who is 14, was around 2nd grade in his academic understanding and that was spotty. When we decided to homeschool and let him use the letter board fo spelling answers, he was able to do 9th grade work in just a few months. We thought he couldn’t add and he easily does algebra and recently asked to learn about cube roots. I am not writing this out of pride for our son. I am telling you this because I don’t think he is the exception, I think he is the rule. In the last year I have seen this over and over again in teens and children who are in life skills classes and who educators and doctors have said are cognitively disabled. When given the opportunity to use RPM or something like it they show us that they have not just been taking it all in, but assimilating it in a typical and functional manner. One day early on our homeschool teachers gave James a vocabulary test. They gave the word “gullible” he spelled “easily fooled." Those examples are endless.
But the most remarkable thing we have learned about James and what I wanted to share in this piece is that despite having suffered in ways unimaginable he (and I think so many of his peers) has great hope for the world and for forgiveness and understanding. It is hard to even put into words what life would be like trapped in your body. Thinking and understanding just like everyone else but not being able to join in a conversation, tell a joke, verbally express love or anger or sadness. To not have friends, have education be limited; the list is long and painful.
But here is a “legend” written by James this week. When I read it my first thought was to put it on Age of Autism because I thought it summarized so much of what this community experiences and it gives us some hope. James said in another conversation that he remains hopeful and I’d like to think we all can. The background is that he is doing Medieval literature in school right now and they have read Beowulf, Sword in the Stone, etc. After discussing (on the letter board) the Sword in the Stone he was given this assignment: (his writing is in Caps)
Why was it so hard for people to believe that Arthur pulled the sword from the stone?
BECAUSE PEOPLE CANNOT BELIEVE THINGS THAT THEY DONT UNDERSTAND.
I received this letter - school paper - from a long time reader of AofA, and asked instantly if I could please share it with you our readers. This young man uses the Rapid Prompting Method to communicate. And just listen to his thoughts..... Rapid Prompting Method RPM empowers the learner a way to express his learning, understanding, reasoning and thoughts.
8-29-13 Narrative – High School Experience – Journal Exercise 1.8
Sam couldn’t do RPM. He was not placing the choices in the right place. I couldn’t touch what I wanted. He placed the choices too far away from me. A giant desk was between us. I had to stretch my arm and it bothered me. It made me tired. My arm felt like lead. Sam also couldn’t speak. He stuttered.
I couldn’t show I was learning anything from Sam. I can’t talk all the words I think and I can’t write. I understand everything read or said to me. It’s ironic. I can’t talk and yet I am critical of Sam's stuttering.
All I could think about was how to hurt him. I came up with a plan, or I had a plan, to hit him whenever I had a chance. They had a bolster blocking me from attacking.
I sat in a lousy hard chair. I was mad because no one knew I was smart. Stinky rotten teachers, Sam was a big black inept jerk. The classroom had cold cinder block walls, yucky zoo classroom. I felt I might as well be in prison.
Ellie gave a workshop on RPM. She was wonderful. I was sad to see her go. She was patient and skilled. She made me feel competent and successful. The other teachers were patronizing. They laughed at her as she spoke and taught. I felt humiliated. I just kept looking down and avoiding eye contact.
We often receive emails from companies offering products that might be of interest to the autism community. This hands-on gaming platform from Digital Dream Labs piqued our curiosity and so, we are sharing it with you. Some of our kids might go to work for companies like Digital Dream Labs one day. As programmers - or maybe for some of our kids, as the nice guy or gal or helps tidy up at night. Let us know what you think in the comments. And check out their KickStarter fundraising page too.
cloudBoard is a new gaming system that brings together the play patterns of real-world toys, like Lego and Lincoln Logs, and modern videogames, such as Angry Birds or Super Mario Bros. This connection of real and digital play is achieved by using toy puzzle blocks to play videogames.
Dear Fellow Age of Autism Readers,
A Thankful and Appreciative Age of Autism Reader
Friends, grab a pom pom to wipe your eyes when you read this wonderful story of autism recovery success, and pride. Keely's Mom is Kendra Pettengill, a long time autism advocate who credits ARI along with school staff and good friends with Keely's outstanding success. But it's Keely herself whose words ring truest, "Impressive!" Congratulations to the family. Keep the hope!
GLIDE, Ore. -- Last week, the Glide Wildcats had their first home game of the season. At that game, there was one cheerleader who was cheering for a lot more than football.
Kendra Pettengill's daughter Keely is on the cheer leading team, but there was a time when she wasn't sure it was best for her daughter. "I was thinking this was the last thing she needs, is to be on a cheer squad," Kendra said.
But, Keely made the varsity cheer squad for her sophomore year.
She's not like most cheerleaders: she's autistic.
Shelby Mehlhoff, a Glide senior, talked about Keely's work ethic. "She comes out and gives it her all everyday," she said.
Sidney Fucciolo, a junior, agrees. "She's came a long way. You can tell she's matured and growing into a woman and getting out of that girl stage," she said.
Hello All - just wanted to followup with a final email to let you know of our results (both physically and monetarily) in hiking the Presi-Traverse and raising money to support the Age of Autism. We started out with a group of 9 hikers leaving at 5:15 in the morning beginning at the Appalachia Trailhead. The "trails" we encountered were more akin to rock climbing for about 80% of the 24-mile hike. By the afternoon at 1:23 p.m. we had reached the peak of Mt. Washington having climbed to 6,288 elevation. At this point having hiked approx. 15 miles in and 4 mountain peaks (see the enclosed pdf), our group reduced down to 6 hikers as my son Jonathan was experiencing severe foot pain and his brother Nick took him off the mountain at this point and the remaining group moved on (as well as 1 other had left at the 4 mile mark).
I and the other 5 of our remaining group continued on and successfully completed the entire 24-mile and 7 mountain peaks at 7:45 p.m. This was one of the most challenging high-end adventures that myself and my boys have ever embarked on, given the rough terrain and elevation climbs. Approximately only 150 people annually complete this trek in one day.
I want to sincerely thank everyone for their support and generosity in donating to this very special cause. With a few late donations still coming in this week, we raised a total of $3,722. That is AWESOME!!!
This conversation started from Harrison noticing me wearing a new pair of flip-flops (the ones from Healthy Souls that benefits Generation Rescue). They were the first flip-flops I’ve ever had, but for the first pair, it was like it was meant to happen.
Harrison saw me wearing them (my sandals) and said, “Dad, you have new shoes!”
This started a conversation which was one of the biggest turning points in his recovery: identifying with autism for the first time. I pointed to the “a” in the puzzle piece (on the sandal) and asked, “Do you know what this is?”
Harrison replied, “It’s a puzzle piece.”
I asked, “Do you know what the “a” means?”
Harrison looked at me and replied, “Autism.”
I had never heard him say ‘autism’ before, so I asked, “Do you know what autism is?”
Harrison replied, “It’s a sickness.”
I asked another question, “What kind of sickness?”
Harrison pointed to his stomach and head saying, “Where your tummy hurts and you can’t talk.”
I was in a state of amazed shock at this point and wanted to keep it going, so I said, “But you can talk now, and you’ve said for awhile that your tummy doesn’t hurt anymore.”
Harrison looked up at me, “Yes, I’m getting much better now.”
I asked him, “How did you get better?” and he answered, “Dr. Usman, Dr. Krigsman, and Dr. Michele (his primary care), are all taking away my autism.”
I could barely squeak out, “Do you remember what it was like when you couldn’t talk?”
Harrison answered, “Yes, it was the sickness, but now I’m much better. Can I watch YouTube now please?”
I opened the prison ministry box, first time, and found my name on your file. I expected maybe a murderer or a drug dealer, not a transgendered Christian minister re-incarcerated for possession of a firearm. Anyway, you’ve been assigned to me, your volunteer pen pal.
I know that there are many ways to be a prisoner. I have a 25-year-old son, Ben, severely autistic. My experience as a single father and caregiver opened my heart to the pain of the least, the lost, and the lonely. I’ve learned that some of the “least” have what the world needs most: the gift, as Jean Vanier says, of leading us gently into the depths of our own hearts, there to find patience, acceptance, and love. After reading the letters in your file, I believe you have that gift.
There’s another connection, too. Last summer I helped found and facilitate AIM Ranch, a residential campus for young adults with autism. One of the campers, a 21-year-old nicknamed Zero, told me that he’d been in every mental hospital, juvenile detention facility, and group home in the vicinity of Dexter, Missouri. Zero’s dad, a professor of agronomy and plant pathology, wanted him to be a missionary, but that didn’t work out so well. In fact, with one important exception, almost everything Zero tried -- to get a driver’s license, sustain a friendship, get and hold a job – didn’t work out so well for him.
My first night on duty at AIM Ranch, I was working on my computer in the common area when Zero passed through on the way to the kitchen, dressed for bed.
“I’m gonna kill myself tonight,” he said. “Yep, tonight’s the night.”
“How are you going to do that, Zero? Rope, knife, gun, pills?”
“I’m gonna slow down my hawt until it stops.”
I could have called Shoal Creek and had him taken to the state hospital, but I’d seen the term astral projection in his email headers, and I had my doubts. “So you’re gonna stop your heart, leave your body, and come back a better person?”
“I’m not comin’ back.”
“Leave your feet sticking out the end of the bed,” I should have said. “Tomorrow morning I’ll tickle your toes. If they don’t twitch, I’ll call 911 and tell them to dump your body in the creek. We have another camper waiting for your bed.”
Zero survived the night, and so did I … but not without checking on him every few hours.
As the summer wore on I became intrigued by this smart, funny, engaging young adult who seemed to have so much going for him, but who couldn’t pull his life together or make anything go right for long. Why couldn’t he live independently? The camp supervisor summed it up: “There is only one reality,” she told him, “and you aren’t in it.” Zero’s tenure at AIM Ranch ended in chaos under threat of violence. He was taken into custody and is serving a sentence in a state-supervised ward.
My heart goes out to Zero. I’ve continued my research into autism and psychosis, and discovered that he and Ben have a lot in common: what Dr. Bernie Rimland, founder of the autism recovery movement, called “dyslogic.” Both Zero and Ben are challenged to think logically, plan for the future, control aggressive impulses, learn from their mistakes, and understand the consequences of their actions. And if Rimland’s associate, brain researcher William J. Walsh, is right, Ben and Zero share a similar biochemistry. I’ve also learned that there are many people like Zero in our jails, mental institutions, homeless shelters, and prisons. Where, under different circumstances, Ben could be too. And that’s why I’m writing to you, Johnnie. I hope to learn how better to help my son.
By Teresa Conrick
In 2012 at Autism One, I met Nicholas Glenski, a young man who said he hoped to "go the distance" and one day, cure himself of autism. He was so enthusiastic and inspired by so many speakers last year that now one year later, he, himself was a speaker at Autism One -- and he did a beautiful job!
I have to confess, when Nicholas called me one evening during the winter months and told me that he was giving a talk on autism and his road to recovery, I was nervous for him as I thought how could he talk about so many issues regarding treatments? Well, being the tenacious teen that he is, Nicholas simply decided to pick up the phone and call researchers, reach out to moms on FB who were treating their own children, and seek out help by reading all he could.
His dad, Richard, told me that this journey first started three years ago in St. Louis when he took Nicholas to an autism conference and they heard Temple Grandin speak. That set off a spark in Nicholas and then a profound desire to learn more, especially when he met a biochemist there who talked about biomedical treatments for autism. One of Temple's books was bought that night, and Nicholas was later reading it voraciously when he accidentally left it in his dad's car between visits. His dad saw it and decided to read it as well. He too felt more inspired, and when he heard that Temple herself was coming to St. Louis for a presentation, Richard surprised Nicholas by taking him there. Nicholas has since told me that Jenny's McCarthy's focus on her son's journey to recovery has made Nicholas a huge fan and also an avid believer in biomedical treatments for autism. Nicholas then began researching for himself because as he stated:
"I was trapped in my body. I could not get out."
On June 15, Nick, Nicholas and Jonathan Zoccoli are going to hike through New Hampshire's White Mountains in a 26 mile Presidential Traverse to raise money for autism action through Age of Autism. Nick is uncle, and Jonathan and Nicky are cousins, to a terrific youngster with autism - whose Mom is a close friend of AoA's Kim Stagliano.
Nick Zoccoli, a longtime and generous supporter of AoA, has offered to dedicate the hike to his nephew and to donate proceeds raised to AoA.
From Section Hiker: "One of the great hikes in the White Mountains of New Hampshire is called a Presidential Traverse. It’s so-called because hikers climb all of the mountains in the Presidential Range of the White Mountains in one continuous hike that’s nearly 23 miles long with close to 9,000 feet of elevation gain."
CLICK HERE TO DONATE to team Zoccoli via PayPal - no account required. (Firefox & Chrome users may experience difficulty. Use Yellow donate button on right sidebar)
Click the YELLOW DONATE BUTTON on the right sidebar.
Send a check payable to Age of Autism c/o Team Zoccoli 41 Northfield Lane, Berlin, CT 06037
Presidential Traverses are usually hiked from north to south, climbing the following sequence of peaks, in order to get the greatest elevation gains over with early on, with hikers starting before dawn and often hiking into the night.
We've finally left April and its namby pamby feel good (not that we don't like feel good stories at AofA) blue lit "awareness" behind. It's fitting that May first was MAY DAY - the call of distress. Here's a story from Generation Rescue, our sponsor, and provider of the Rescue Family Grant. This grant program puts dollars into familes' hands and medical treatment. And it is quietly changing lives for the better. Thank you to Jenny McCarthy, Candace MacDonald and the entire GR team. You can meet Jenny and bask in the GenRescue Lounge at the Autism One Generation Rescue conference in Chicago later this month. The cost is just $50 for a five day conference if you register by May 6.
Listen to what a Mom said about what the grant has done for her son:
Less than a month into starting biomedical treatment, the Generation Rescue grant recipients are making amazing progress!
"P's teachers were thrilled today when I came to pick him up from school. They said it was the best day he's had in a long time. P's expressive and receptive language is just taking off. He is able to express anything he wants. We're over the moon! Seeing these positive changes makes us so grateful for this opportunity."
-V, Mom to P
To find out more about the Generation Rescue Family Grant program and to apply to start treatment, please visit Gen Rescue.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
By Anne Dachel
After reading the Thinking Moms’ Revolution, I know one thing: this is our book. The twenty-three moms and one dad included in TMR tell all our stories to some degree. And they are THINKING. They question, they research, they dispute, and they discover. The title is a perfect one for what these people do.
As we all know, no two autistic children are exactly alike and neither are their parents’ experiences. There are however, lots of common threads revealed in the book. There are the accounts of the bubbling excitement and great expectations parents had when their children were born and the disbelief and fear in the face of regression and developmental stops. There are the doctors who failed to understand what autism is doing to our children or to provide real help to parents.
TMR is also about hope and success. It’s moms who struck out on their own to find answers and did it. It was the Internet that was their lifeline. There they found resources and support groups like the Thinking Moms, the National Autism Association, Age of Autism, and Talk About Curing Autism. Most of all, they made connections with other parents that empowered and informed them. The computer provided the education they needed. Moms learned about homeopathy, organic food, supplements and special diets.
“Homeopathy brought speech, receptive language, cognitive gains and increased awareness.”
Thank you to a reader who sent us this poem for World Autism Day. The photo is my daughter's hand from one of the several injuries she received during her months of abuse while riding the bus. Black and blue should be the colors of today - as so many of our loved ones face danger because of their autism. K
Color me blue
I’m aware of your pain
That your child was harmed
By a merciless bane
Color me blue
I’m aware of their woe
That they face hardships
Which others don’t know
Color me blue
I’m aware of turned heads
Who should be helping
But who hurt instead
Color me blue
And a tear for you
My heart goes out
Color me blue
Managing Editor's Note: For information on wandering and an action tool kit called The Big Red Box, please visit National Autism Association's AWAARE program.
By Mark Bucknam
It was Tuesday, April 25, 2011, a beautiful warm spring morning in Potomac, Maryland, a suburb of Washington DC. At John’s house, a radio alarm clock sounded at 5:45 a.m., softly delivering the news of the day, growing gradually louder. John’s dad quickly silenced it, wanting to allow his wife another 15 minutes of sleep before her alarm signaled the start of her day. Raising John, a moderately autistic adolescent, required a team effort by his parents. John’s dad awoke first to prepare vitamin and dietary supplements that doctors believed John needed to compensate for deficits in his metabolism—deficits common among autistic children. Mom would follow soon after, to make sure the kids were properly dressed and fed before getting on their respective school buses.
A few weeks from his 15th birthday, John had the functional intelligence of a boy half his age, but none of the emotional intelligence. That was autism…or at least the manifestation of autism in John. Every autistic person is different, though many share similar intellectual deficiencies, quirky behaviors, and most tellingly, social deficits. They lack interpersonal skills.
Like his older sister, John had bright blue eyes and red hair, though his was cut fairly short, hers was long and curly. John was 5’8” tall, trim and solid at 140 pounds. He usually slept well, but was full of nervous energy during his waking hours.
It had not been a good night. John had barged into his parent’s bedroom at 2:30 in the morning, fully awake. His groggy parents teamed up to coax and cajole him back to his own bed. His mom stayed with him a while, until he settled down and seemed ready to go back to sleep, before she headed back to her own bed. John’s dad ventured downstairs to the first floor to check the lock on the refrigerator and the lock on the door from the den to the garage to make sure that they were locked —these were the two locked doors that the family used most often and most likely to be accidentally left unlocked.
For John’s safety, everything had to be locked, either to keep him out of it—like the refrigerator, the kitchen pantry, the basement, and the guest bedroom—or to keep him from getting out of the house through it—like the front door, the patio doors, and the door from the den to the garage. The locks were identical, excepting for the one on the front door. They were all small combination locks with three rotary wheels containing numbers from 0-9 used to set the combination. All of the locks were set for the same combination—a number that marked the month and day of John’s dad’s birthday.
Downstairs early that Tuesday morning, John’s dad turned on the coffeemaker and a small TV, which quietly detailed world news. He measured out John’s morning supplements – making sure not to confuse the morning batch of vitamins with those John would get in the afternoon, or the ones he would take just before bedtime. By 6:00 a.m., John’s dad climbed back up the stairs and quietly slipped into John’s bedroom.
John’s bed was empty.
Congrats to Daniella, our winner!
Thank you to Melissa at The Puzzling Piece for offering us a beautiful heart necklace for a lucky AofA reader. Melissa started the "iPad Challenge" program for families to win an iPad in an easy sales contest. It's almost Autism Action Month - a great time to join the Challenge.
My husband and devoted father to our two son comes from a family of educators.
It was only logical that our son continue his secondary education as an
extension of his student experience that started when he was 3 1/2 years old.
Like a long rising phoenix, this young man had paid his dues and deserved a
college experience, Right?
Wrong. Apparently we were dead-assed wrong and the minutes scribed during our brief meeting will only relay our ignorance. The road we travel just got infinitely longer supporting our now adult son with ASD.
The gate-keeper required him to pass a 3 hour reading and writing assessment, unsupported, with a timer looming in the corner. For art classes - even labs. Awesome. Didn't we cover our Achilles heel well enough over the 15 years of education, therapies, assessments, awards, grades, passing federal standardized testing, his web-site, posted online art submissions all while earning exceptional honors? Nope.
Losing eye contact. Right. About. Now.
We, the parents, knew exactly what was happening. Our son was being deliberately set up to fail. This was not acceptable, on any level, with any student. On the way home, the conversation in the car yielded a new plan. Anxiety was replaced with reassurance that he would NEVER again have to take class or be assessed just to learn the skills he needs to use equipment and techniques to create his own brand of graphic arts.
Artists with Autism, Earn Extra Holiday Shopping Money
Beacon Day School,
supporting programs for adults and microenterprise, would like to obtain more
artwork by individuals with autism to beautify the environment for students.
Beacon Day School features many paintings by award-winning artist Trent Altman,
whose mother, Dr. Jackie Marquette, recently came on board as AutismOne art
Between December 5th and December 15th, individuals with autism or their caregivers are invited to email pdf or jpg images of their art that is valued between $150-$500 to firstname.lastname@example.org.
Please include the artist's name, website address, mailing address, phone number, and dimensions and price of each piece submitted by December 15th (also send a second email with no attachment that lets Beacon know of your submittal, just in case the email with an attachment bounces). Three pieces will be selected, which, after verification of availability to ship to Beacon by January 11th, will be announced on the Beacon Day School website's Focus on Art tab, www.beacondayschool.com/artists.html, on December 18th. A check will be mailed from Beacon to the three selected artists December 19th (shipping costs are the responsibility of the artist; please ship insured). Selected pieces will be depicted on the Beacon website and displayed at the AutismOne conference in May 2013.