Dreams

ALWAYS Search Near Water

IMG_2945A-utism

L-ook

W-ater

A-nd

Y-ell

S-ongs

This beautiful 3 year old boy, Ali Mohamed, wandered and drowned in Minnesota. The A-L-W-A-Y-S is a way to remind folks that they need to search near water first. And rather than shout out the person's IMG_2946name, blare SONGS that they love. Cocomelon, Paw Patrol, Bubble Guppies (Line Up, Everybody!) Bananaphone, Barney, Blippi, Sunny Day Sweeping The Clouds Away, Thomas... any song they will recognize, as a way to get their attention and make them MOVE toward the sound and away from danger.

Please, never forget the very real dangers that follow an autistic person like the grim reaper. We won’t.

You can order a FREE Big Red Safety Box from NAA right now.  Click HERE.

Missing boy found dead in Minnehaha Creek

On Monday, officials said they think the incident was an accident but plan to investigate what happened.

HOPKINS, Minn. — At a Monday afternoon press conference, officials announced a missing 4-year-old boy with autism was found dead in Minnehaha Creek. 

During the search on Monday morning, KARE 11's Lou Raguse was near Minnehaha Creek, just off the 7800 block of Powell Road, when he witnessed law enforcement and search crews pouring into the area. Officers put up police tape to keep the public away, and the mood of the first responders was described as grim. 

Hopkins Police Department Captain Craig Krieling told those gathered at the press conference that Minnehaha Creek is running fast due to recent rains. Krieling said officials believe at this point that the boy drowned after leaving his apartment on his own. 

"Get to know your neighbors, get to know the people within your communities. Possibly, if there could have been somebody that might have seen him at a particular moment," said Krieling, when asked what the public can do to prevent an incident like this from happening again. 

"We ask for those people to step up, take some action, call the police is something is out of the ordinary. Let people know." 

On Sunday, police said Waeys Ali Mohamed wandered away from the Chorus Apartments on the 1200 block of Lake Street around 7:30 a.m. wearing only blue pajama pants. Family members say Waeys had autism, could not speak and was easily startled or scared by loud noises. 

KARE 11's Audrey Russo reported that more than two dozen volunteers were on hand as the search for the missing child kicked off Monday morning. Many of them are parents or grandparents of children who are Waeys' age, or have connections to the Twin Cities autism community. 

Kreiling said Hopkins law enforcement personnel first began searching for Waeys shortly after he was reported missing and were soon joined by firefighters, search and rescue teams, drone pilots and State Patrol aircraft, and multiple K-9 units from departments across the metro. Searchers worked the area all day Sunday but did not locate the boy. 

Like many children with autism, Kreiling said Waeys was drawn to water, and Minnehaha Creek runs near his family's apartment. Firefighters got in the water Sunday with their safety suits, and various types of watercraft were also utilized in the search. 

###

DenialDan Olmsted and Mark Blaxill wrote this book several years ago. It's more important than ever. The whitewashing of autism costs lives.

Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our FutureDenial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future


To Tell The Tooth

915CEAEA-F1E3-484B-90D5-1C867743655CUpdate: DARN I missed the proper headline: TA TA TARTAR!  LOL!

Every so often, we run a post that seems banal, but strikes a chord for readers. I think this will be just such a post today. My Dad was an orthodontist, and dental care is at the top of our health priorities. Care is difficult for many (most?) kids with autism. And guess what? It’s worse for adults! If you are on a Medicaid waiver, you get 1 cleaning a year, IF you can find a dentist who will treat you. That's a big if.

One of my daughters is prone to tartar, hard calculus that builds up at her gum line, no matter how diligently I keep up with her oral care. She’s never had a cavity - and she’s approaching 30. But trips to the dentist require scraping off the tartar. She hates it. I hate it. I’m pretty sure the hygienist hates it.

Before our upcoming visit, I was determined to get rid of the tartar safely at home. And I did!!  I did my homework, and bought two products. In a matter of ten days with just brushing and flossing, the first bit of tartar fell off while Dentistbrushing! Her lower teeth are now tartar free. I think my Dad would be proud. Here’s what I’m using:

TheraSOL Tartar Dissolver and Tartar End toothpaste (gluten and fluoride free.)  My Dad did not invent these products. I have no stake in them. I just want to share a tip that's worked for us!

Share any tips you have for helping your child, whether a tot, teen or grown up!   Kim

###

Vax Unvax Book CoverYou can buy Vax-Unvax Let the Science Speak By Robert F. Kennedy, Jr. and Brian Hooker, PhD for just $1.99 Kindle edition. The Kindle app works on your tablet or smart phone and is free!  Hardcover also available and can never be deleted.  NEW YORK TIMES BESTSELLER!

The Studies the CDC Refuses to Do

This book is based on over one hundred studies in the peer-reviewed literature that consider vaccinated versus unvaccinated populations. Each study is analyzed, and health differences among infants, children, and adults who have been vaccinated and those who have not are presented and put in context.

Given the massive push to vaccinate the entire global population, this book is timely and necessary for individuals to make informed choices for themselves and their families.

Wuhan bioweapons coverThe Wuhan Cover-Up: And the Terrifying Bioweapons Arms Race (Children’s Health Defense)
By Robert F. Kennedy, Jr.

“Whenever I read, listen to, or debate Bobby, I learn something new and change my mind on at least one or two issues, while vehemently disagreeing with many others. Both the agreements and disagreements stimulate my thinking and emotions, even when they make me angry or concerned. Read him and make up your own minds." —Alan Dershowitz

“The Wuhan Cover-Up will blow out of the water the international disinformation campaign by US and Chinese government officials and their bribed scientists that COVID-19 somehow magically jumped out of the Wuhan wet market. Kennedy’s book will provide the ammunition needed for us lawyers to hold them all legally accountable for this Nuremberg Crime against Humanity.” —Professor Francis A. Boyle, author of the Biological Weapons Anti-Terrorism Act of 1989





Literacy in Nonspeaking Autistic People

Spelling boards..."nonspeaking autistic people can acquire foundational literacy skills."

We implore you to read and share this study about spelling as a means of communication. We've only excerpted the abstract, visit the link below to read the entire study.

https://journals.sagepub.com/doi/10.1177/13623613241230709

Jaswal, V. K., Lampi, A. J., & Stockwell, K. M. (2024). Literacy in nonspeaking autistic people. Autism, 0(0). https://doi.org/10.1177/13623613241230709

Literacy in Nonspeaking Autistic People

Abstract

Autistic people who cannot speak risk being underestimated. Their inability to speak, along with other unconventional behaviors and mannerisms, can give rise to limiting assumptions about their capacities, including their capacity to acquire literacy. In this preregistered study, we developed a task to investigate whether autistic adolescents and adults with limited or no phrase speech (N = 31) have learned English orthographic conventions. Participants played a game that involved tapping sequentially pulsing targets on an iPad as quickly as they could. Three patterns in their response times suggest they know how to spell: (a) They were faster to tap letters of the alphabet that pulsed in sequences that spelled sentences than letters or nonsense symbols that pulsed in closely matched but meaningless sequences; (b) they responded more quickly to pairs of letters in meaningful sequences the more often the letters co-occur in English; and (c) they spontaneously paused before tapping the first pulsing letter of a new word. These findings suggest that nonspeaking autistic people can acquire foundational literacy skills. With appropriate instruction and support, it might be possible to harness these skills to provide nonspeaking autistic people access to written forms of communication as an alternative to speech.

Lay abstract

Many autistic people who do not talk cannot tell other people what they know or what they are thinking. As a result, they might not be able to go to the schools they want, share feelings with friends, or get jobs they like. It might be possible to teach them to type on a computer or tablet instead of talking. But first, they would have to know how to spell. Some people do not believe that nonspeaking autistic people can learn to spell. We did a study to see if they can. We tested 31 autistic teenagers and adults who do not talk much or at all. They played a game on an iPad where they had to tap flashing letters. After they played the game, we looked at how fast they tapped the letters. They did three things that people who know how to spell would do.

Continue reading "Literacy in Nonspeaking Autistic People" »


National Autism Association Toolkit For Turning 18

Calm OlderDo you remember singing, Landslide when you were young? I do... "But time makes you bolder, even children get older. I'm getting older too." Takes on a stark meaning with you have severely disabled children. Thank you to National Autism Association for creating a free, downloadable toolkit for when our kids turn 18.

NAA’s Age of Majority guide is a free, downloadable toolkit for caregivers in need of information and resources to prepare and support their child through the transition from adolesence to adulthood.  The toolkit is free, click here to download.


We Have to Believe in Santa Claus

Santa With Child
I saw the post below on Facebook yesterday. How do you feel when someone, ANYone goes out of his or her way to meet your child where he or she is? To ignore the communication or behavior barriers. To disregard the developmental age difference. TO TREAT YOUR CHILD LIKE A PERSON WORTHY OF FULL PRESENCE. I know parents who barely connect with their own children. And strangers who can click just like that. The holidays can be so hard for families in the AofA community. I don't need to list the ways, you surely know. The holidays can also remind us that love exists, kindness is not gone and there will always be someone to cherish our children, if only for a visit.  To make our broken hearts.... full.

The post is attributed to Theresa Hudson on Facebook.

I whispered to Santa “he is blind and autistic and is very interested in Santa”. He said “say no more” and immediately got down on the floor to greet my little man. He talked to Matthew for a long time. Let him feel all over him. Told him to pull his beard, feel his hat and talked about his red suit. He asked Matthew if he wanted to feel anything and Matthew said “your eyes that twinkle” (from the poem ‘twas the night before Christmas) so santa let him touch all over his eyes for as long as Matthew wanted. Then Santa said have you ever felt a real reindeer. Santa then carried him over to the display area. And had Matthew pet the taxidermy reindeer they had set up. It was great. My heart was full seeing Matthew so interested.

Wuhan bioweapons coverThe Wuhan Cover-Up: And the Terrifying Bioweapons Arms Race (Children’s Health Defense)
By Robert F. Kennedy, Jr.

“Whenever I read, listen to, or debate Bobby, I learn something new and change my mind on at least one or two issues, while vehemently disagreeing with many others. Both the agreements and disagreements stimulate my thinking and emotions, even when they make me angry or concerned. Read him and make up your own minds." —Alan Dershowitz

“The Wuhan Cover-Up will blow out of the water the international disinformation campaign by US and Chinese government officials and their bribed scientists that COVID-19 somehow magically jumped out of the Wuhan wet market. Kennedy’s book will provide the ammunition needed for us lawyers to hold them all legally accountable for this Nuremberg Crime against Humanity.” —Professor Francis A. Boyle, author of the Biological Weapons Anti-Terrorism Act of 1989




Thanks To You Looks Like We Made It!

Leo costumeCaption: Do any of you know the book, Leo The Late Bloomer?  Leo's Dad doubts his delayed son will ever improve. Leo's Mom has nothing but confidence in her child. The story ends with the line, I MADE IT!" I used to read it to my daughter Bella's classroom to explain to the kids why she did not speak. In Kindergarten, I made her a Leo costume.

Thank you to everyone, especially our crypto QB who got us over the goal line and of course, Laura and Rich Hayes. We made our $10,000 matching gift with room to breathe! Every dollar keeps the site up and running.

Our refusal to stop telling our stories of vaccine injury has cost us dearly over the years. I laugh when I read about this "sudden censorship" because of Covid. We were shadow banned, de-listed, UnGoogled, dropped, cancelled and deleted long before it was a fashionable lament. We continue in Dan Olmsted's mission to tell the world that autism is a man made epidemic.

My "kids" are now adults with Mia turning 29 next week! And with far too many diagnosed kids following behind them. We've expanded our focus to include the crushing weight on school systems, and the paucity of adult services and support. The future is going to be what WE make it. And so I thank you all for the chance to keep going. And going. And going.  XOX  Kim Rossi, Managing Editor, Executive Director, Chief, Cook and Bottle washer. STILL no Mother Teresa. ;)

Vax Unvax Book CoverYou can buy Vax-Unvax Let the Science Speak By Robert F. Kennedy, Jr. and Brian Hooker, PhD for just $1.99 Kindle edition. The Kindle app works on your tablet or smart phone and is free!  Hardcover also available and can never be deleted.  NEW YORK TIMES BESTSELLER!

The Studies the CDC Refuses to Do

This book is based on over one hundred studies in the peer-reviewed literature that consider vaccinated versus unvaccinated populations. Each study is analyzed, and health differences among infants, children, and adults who have been vaccinated and those who have not are presented and put in context. Readers will find information on:

The infant/child vaccination schedule
Thimerosal in vaccines
Live virus vaccines
The human papillomavirus (HPV) vaccine
Vaccination and Gulf War illness
Influenza (flu) vaccines
Hepatitis B vaccination
The COVID-19 vaccine
Vaccines during pregnancy

Given the massive push to vaccinate the entire global population, this book is timely and necessary for individuals to make informed choices for themselves and their families.

Wuhan bioweapons coverThe Wuhan Cover-Up: And the Terrifying Bioweapons Arms Race (Children’s Health Defense)
By Robert F. Kennedy, Jr.

“Whenever I read, listen to, or debate Bobby, I learn something new and change my mind on at least one or two issues, while vehemently disagreeing with many others. Both the agreements and disagreements stimulate my thinking and emotions, even when they make me angry or concerned. Read him and make up your own minds." —Alan Dershowitz

“The Wuhan Cover-Up will blow out of the water the international disinformation campaign by US and Chinese government officials and their bribed scientists that COVID-19 somehow magically jumped out of the Wuhan wet market. Kennedy’s book will provide the ammunition needed for us lawyers to hold them all legally accountable for this Nuremberg Crime against Humanity.” —Professor Francis A. Boyle, author of the Biological Weapons Anti-Terrorism Act of 1989


Final Inning for our Matching Gift Campaign

Autism RealityDan Olmsted, Mark Blaxill and I launched Age of Autism in November of 2007 to shed light on the man made epidemic. To support each other in what is a lonely journey.  It’s still our core mission, though many of our kids are now adults, so we share lots of life stories to support one another.  I still talk to parents of newly diagnosed toddlers. It breaks my heart. And I work hard to remember those early days.  Speaking of our launch, we're in the last inning of our fund raiser and could use a few hits to help us keep going. PLEASE consider a donation of any amount to help us reach our $10,000 matching gift goal. Paper checks to Autism Age, PO Box 110546 Trumbull CT 06611 or use safe, secure Donor Box at the link below. Thanks!

Donate


AofA 2023 Matching Gift Campaign Has Begun!

Thank you typeNote: 10,000 thanks to Laura and Richard Hayes for their annual matching gift campaign. We're entering our 18th year of publication. I can hardly believe it. Like Laura, I too thought we'd be "out of business" by now. Because the man made epidemic would have been acknowledged and dare I have ever hoped for it - atoned for. Not so. Our goal is $10,000 before November 30. We use secure Donor Box and we accept checks to Autism Age, PO Box 110546, Trumbull CT 06611. EIN-47-1831987


Donate
###

From Laura:

Dear AoA Readers, what a joy it is to connect daily with those whose lives have also been impacted by "autism", a label which many of us believe to be an intentional misnomer for serious, life-altering, debilitating, often catastrophic, vaccine-induced injury. I certainly did not ever think 25+ years ago, once I made the connection between "routine" childhood vaccinations and our son's subsequent loss of skills, development of odd behaviors, and resultant profound disability, that medical "professionals" would still be administering vaccines to children.

Continue reading "AofA 2023 Matching Gift Campaign Has Begun!" »


The Rush to Judgement - See The Capability Not The Disability

I can do itBy Kim Rossi

Several months ago, I came across this story on Facebook. It's attributed to a Dave Hingsburger, so I'll include that. I've had every single member of my daughters' team read it. When you have adult children with autism, life is different from the childhood days. As parents, we have to make a conscious shift from thinking of (and treating) our children as.... children.  Education, including advanced degrees, focus on early childhood.   People who go into adult services learn as they go. And bring their pediatric mindset with them. I've worked hard - sometimes NOT very nicely - to tell day program staff that my daughters are bright, intelligent ADULTS who need appropriate engagement.  Anyway, I hope this story speaks to you as much as it did to me, and you can share with your child(ren) and team.  It also applies to the elderly. XOX  Kim

He was slowly cutting a piece of his pizza. It was clear that whole he would be unable to ear it by picking it up with his hands, he would be able to do so bu cutting it up into pieces and spearing those pieces with his fork, and then taking the food to his mouth.

He was with a staff who had turned her back to him to text a message or otherwise use her cellphone. Her thumbs flew as she did what she did. She then turned to see that he had started his meal and a look of "this is hard to believe" annoyance crossed her face.

"I told you to just wait a moment, she said. I couldn't hear his answer, as he spoke very softly. "Well, never mind," she said, and she took the knife and fork from him against his small protest, and began to cut up his food. "Don't fuss, " she said. "This will make it much easier for you to get at the pizza faster." Then she laughed.  He didn't. He looked deflated.

When a piece of pizza went astray, he picked up his napkin to wipe his mouth. She saw this and took it from him. She didn't say anything this time, and neither did he. But he hung onto the napkin and it ripped. She grabbed another one and went for his mouth. She had a firm, "I'm HELPING you" look on her face. Again, he looked defeated.

She hovered over him.

She took what belonged to him.

A kind of theft of his independence and his self-esteem.

We've all heard about helicopter parents who hover over their children. Who do for them what belongs to them. Who try so hard to be there at every moment that initiative and skills are slowly smothered. It doesn't matter how soft the pillow is that takes the breath from one's self. It only matter that it kills.

I have no doubt that the staff was trying her best to do her best. I have no doubt that her intention was to give him wht he needed. The only problem was, it's what SHE THOUGHT he needed.

The goal in service is to "respect the disability while not disrespecting the ability."

She saw his disability, but she did not see his capability. She did not give him room to grown, to use what he had.

He protested her interference with his independence. He still had a spark in him.

I hope she puts the pillow down, and realized it's not her job to snuff out that spark, but to fan it until it bursts into flame.

Wuhan bioweapons cover

The Wuhan Cover-Up: And the Terrifying Bioweapons Arms Race (Children’s Health Defense) 

“Gain-of-function” experiments are often conducted to deliberately develop highly virulent, easily transmissible pathogens for the stated purpose of developing preemptive vaccines for animal viruses before they jump to humans. More insidious is the “dual use” nature of this research, specifically directed toward bioweapons development. The Wuhan Cover-Up pulls back the curtain on how the US government's increase in biosecurity spending after the 2001 terror attacks set in motion a plan to transform the National Institute of Allergy and Infectious Diseases (NIAID), under the direction of Dr. Anthony Fauci, into a de facto Defense Department agency.

Vax Unvax DebutJoin us in congratulating Dr. Brian Hooker and Robert Kennedy, Jr. and the Children's Health Defense imprint on the huge news that Vax Unvax Let The Science Speak was #11 on the New York Times non-fiction best sellers list this week.  This is important because it tells those who feel they shouldn't question science, "Hey, it's OK to read, and learn and make your own decisions."  It's currently 124 on ALL of Amazon books.  Buy a copy HERE


The Unlikely Village of Eden A Memoir

Eden VillageNote: I read this memoir over the Summer. It plunged me back into the early days of my daughters' diagnoses. The chaos, the never ending worry, the fierce love and sometimes, the village that helps. Author Emma Nadler brings a fresh perspective I can't say we've read previously, and I'll leave that as part of your reading journey. I think you will appreciate her story. You can purchase a copy HERE.

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The Unlikely Village of Eden
By Emma Nadler

A profoundly thought-provoking, funny, and hopeful memoir about adapting when life doesn’t go to plan, redefining family, and creating your own path.

One afternoon, Emma Nadler gets a call from her daughter's doctor that changes her life forever. Faced with the realities of raising a child with a rare genetic condition, Nadler must confront her preconceptions of motherhood and her perfectionistic beliefs.

With a generous wit and a wide-open mind, Nadler—who also happens to be a psychotherapist—offers a rare window into the unconventional ways she and her family adapt to their improbable path. Every relationship in her life—with herself, her husband, children, friends, and even clients—is reimagined as she navigates the heartbreak and hilarity of her daily life.

As she and her husband join the 53 million caregivers in the United States, Nadler wrestles to belong in a society that devalues both caregivers and people with disabilities. She challenges the scripts that mothers should be martyrs, or that self-sacrifice is a necessary component of love. Nadler illustrates the complexity, grief, and joy of living an unexpected life, all with the wisdom of a therapist, the heart of a loving parent, and the ingenuity of a queer woman who refuses to be shackled by cultural expectations.

The Unlikely Village of Eden is an insightful and wholehearted look at the long-ignored realities so many families live with daily. Nadler is a trusted guide who confronts both hope and despair as she gives readers the gift of what it looks like to redefine love, success, family, and community.


 


Meet Charlie: A Boy With Autism Born in 1951

Mom & Charlie 3(1)Note: Thank you to Laura Hayes for connecting us with Carla Howell, whose brother Charlie, born in 1951, had autism. Our focus is often autism from the 1990s forward. But our genesis was The Age of Autism book Dan Olmsted & Mark Blaxill wrote about the beginning of the first diagnosed cases of autism. Carla's story likely resonates with many in their later years, who have, or had a sibling with special needs.  She wrote a lovely, haunting song called What's Inside Your Head as a tribute to her brother's life. You can find it here. Please join us in welcoming her to the AofA family. Kim

By Carla Howell

The story of my brother Charlie, born in 1951, is quite different from most I’ve heard from families with an autistic child. I have only sketchy information about his early life as I didn't meet him until I was 35 years old. Much of what I know came second or third hand, so I can’t be certain that it’s accurate.

From what I was told, my parents had not acknowledged that there was something wrong with Charlie. So when he was just under three years old and my mother was pregnant with their next child, my grandmother sent my parents on a vacation. While they were gone, she got Charlie diagnosed. He had autism, which was rare in those days. Most people hadn’t heard of it.

At some point thereafter, my parents put him in a private care program run by a woman who later became terminally ill and had to close her business. I don't know if he boarded with her or if it was a day program of some kind. Around the time I was born, they put him in a state institution in our then-home state of Michigan because my parents were afraid that he would hurt my brother or me.

When my mother visited Charlie there, he would get agitated, and the doctors advised her to stop coming. As one who held doctors in high esteem, she obeyed, and that was the end of her direct contact with her son.

We moved to Pittsburgh in 1960. I remember my father taking trips to Detroit to visit Charlie and bringing him gifts. But eventually, Charlie quit recognizing him, so my father eventually quit visiting him as well. 

My parents said that, as a little one, Charlie was quite good at identifying the make of cars he would see when they were driving around. It was one of the few things I grew up knowing about my brother.

When I tried to ask my mother questions about him, she was always willing to answer. But I could feel her discomfort to such a degree that I'd forget my questions. So I'd give up, again, and remain in mystery about my brother. My experience asking my father questions was similar.

I often struggled to explain why I had a brother whom I’d never met. I feared people would think poorly of my parents for abandoning their son. In truth, they were extremely loving people who were caught up in a time when parents were given bad advice about how to handle a child with a developmental disability, which at the time was considered to be a form of mental illness (like Rosemary Kennedy who was given a lobotomy). I know that their loss of Charlie was a life-long wound for which they both suffered immensely. I can only imagine what they went through before I arrived.

I often thought of trying to meet Charlie but didn’t for fear of upsetting my mother.

Then in 1987, she was diagnosed with cancer. One day, as she laid on her deathbed, she suddenly Charlie and Carla 1990awoke. In desperation, she mumbled something about Charlie. I took it to mean she was concerned about his future, so I assured her we would take care of him. She seemed to be relieved and fell back asleep.

That prompted me to finally look him up and visit him in Michigan. I expected to see a man in a rubber room curled up in an embryotic position in some horrific institution. But he had been moved to residential adult care. And although he had only a handful of words at his disposal, Charlie was far higher-functioning than I imagined. We bonded immediately. 

I eventually became his legal guardian. My sister and I considered moving him to Massachusetts where we both lived at the time. But after having a friend in the business evaluate his situation, we decided that it was a relatively good one. The management was very nice and seemed to really like him. Plus, he was in a program doing piecemeal work where he was doing well. So we decided to keep him in Michigan.

In 2001, Charlie passed away at age 50. I look back on his very limited life with sadness but also with gratitude that I got to meet him and make him part of my life.

I wrote the song What’s Inside Your Head for his memorial service. I share it in the hope that it will be soothing for people with autistic loved ones.

###

Carla Howell has had a passion for medical freedom since 1993. With a background in tech, marketing and management, she became politically active in 1996. She ran for office three times from 1998- 2002 and headed three statewide tax-cut ballot initiatives in Massachusetts from 2002-2010. She served as Political Director and Executive Director for the Libertarian National Committee and was Communications Director for the 2020 Jo Jorgensen for President campaign. In recent years, she has been releasing liberty-themed songs that she composed and recorded. She leads candidate training workshops and speaks publicly about liberty issues. She also volunteers for the Virginia Medical Freedom Alliance, which advocates for parents being fully informed and having choice as to whether to vaccinate their children.

### From Skyhorse Publishing

The War On Ivermectin Yellow Cover
The War on Ivermectin: The Medicine that Saved Millions and Could Have Ended the Pandemic

#1 Seller in Forensic Medicine

By Pierre Kory Dr. (Author), Jenna McCarthy (Author)

Big Pharma and health agencies cry, “Don’t take ivermectin!” A media storm follows. Why then, does the science say the opposite?” Ivermectin is a dirty word in the media. It doesn’t work. It’s a deadly horse dewormer. Prescribe or promote it and you’ll be called a right-wing quack, be banned from social media, or lose your license to practice medicine. And yet, entire countries wiped out the virus with it, and more than ninety-five studies now show it to be unequivocally effective in preventing and treating Covid-19. If it didn’t work, why was there a coordinated global campaign to cancel it? What’s the truth about this decades-old, Nobel Prize-winning medication? The War on Ivermectin is the personal and professional narrative of Dr. Pierre Kory and his crusade to recommend a safe, inexpensive, generic medicine as the key to ending the pandemic.


Vax Unvax Book Cover Vax-Unvax: Let the Science Speak (Children’s Health Defense) Hardcover – Illustrated, August 15, 2023 by Robert F. Kennedy Jr. (Author), Brian Hooker (Author)

Based on over one hundred studies in the peer-reviewed literature that consider vaccinated versus unvaccinated populations. Each of these studies is analyzed and put in context of the difference in health outcomes of vaccinated versus unvaccinated infants, children, and adults. Given the massive push to vaccinate the entire global population, this book is timely and necessary for individuals to make informed choices for themselves and their families.


Persisto Ergo Sum

355B4A77-76AB-45B7-BFF1-3975D3238A9DBorrowed from Facebook.  Reminded of a Joni Mitchell song:

And the seasons, they go round and round. And the painted ponies go up and down. We’re captives on the carousel of time. We can’t return. We can only look behind from where we came. And go round and round and round in the circle game. 

Keep persisting friends.

###

Order today, from Skyhorse Publishing.

Wuhan Cover Up Book CoverThe Wuhan Cover Up How Health Officials Conspired with the Chinese Military to Hide the Origins of COVID-19 (Children’s Health Defense)

The Wuhan Cover-Up pulls back the curtain on how the US government's increase in biosecurity spending after the 2001 terror attacks—facilitated by Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID)—set in motion a plan to transform the NIAID into a de facto Defense Department agency.

While Dr. Fauci zealously funded and pursued gain-of-function research, concern grew among some scientists and government officials about the potential for accidental or deliberate release of weaponized viruses from labs that might trigger worldwide pandemics. A moratorium was placed on this research, but true to form, Dr. Fauci found ways to continue unperturbed—outsourcing some of the most controversial experiments offshore to China and providing federal funding to Wuhan Institute of Virology's (WIV's) leading researchers for gain-of-function studies in partnership with the Chinese military and the Chinese Communist Party.

Vax Unvax Book Cover Vax-Unvax: Let the Science Speak (Children’s Health Defense) Hardcover – Illustrated, August 15, 2023 by Robert F. Kennedy Jr. (Author), Brian Hooker (Author)

Based on over one hundred studies in the peer-reviewed literature that consider vaccinated versus unvaccinated populations. Each of these studies is analyzed and put in context of the difference in health outcomes of vaccinated versus unvaccinated infants, children, and adults. Given the massive push to vaccinate the entire global population, this book is timely and necessary for individuals to make informed choices for themselves and their families.

 

 




I Scream You Scream Hooray for Brandon's Autism Ice Cream Parlor!

Brandon's Pancake
Thought we should serve up some good news.  Brandon's Pancake House Ice Cream Parlor has opened in New Jersey. Love the puzzle piece heart logo. Ice cream and pancakes?  Sounds good to us.  In Wildwood, New Jersey. It’s amazing how families are taking charge and creating opportunities. This is what awareness and yes, acceptance is about. With a cherry on top! If you’re on the Jersey Shore, check them out.

6200 New Jersey Avenue
Wildwood Crest, NJ 08260

609-305-4807

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The Vaccine Court bookThe Vaccine Court 2.0: Revised and Updated: The Dark Truth of America's Vaccine Injury Compensation Program

By Wayne Rohde

The Vaccine Court looks at the mysterious and often unknown world of the National Vaccine Injury Compensation Program (NVICP), the only recourse for seeking compensation for those who have been injured by a vaccine. The NVICP, better known as the ”Vaccine Court,” however, is not without controversy.

Established by Congress as a direct result of the passage of the National Childhood Vaccine Injury Act of 1986, the NVICP was supposed to offer a no-fault alternative to the traditional injury claims filed in state or federal courts and was to provide quick, efficient, and fair compensation for those who have been injured by vaccines. The reality, however, is that many cases take several years or longer to complete and require tremendous commitment from families already pushed to the brink of bankruptcy caring for the vaccine-injured family member, only to discover that the end result is manipulated by the government in defense of the US vaccine policy.


A Letter to LiberalsA Letter to Liberals: Censorship and COVID: An Attack on Science and American Ideals

By Robert Kennedy Jr.

A leading Democrat challenges his party to return to liberal values and evidence-based science
 
Democrats were the party of intellectual curiosity, critical thinking, and faith in scientific and liberal empiricism. They once took pride in understanding how to read science critically, exercising healthy skepticism toward notoriously corrupt entities like the drug companies that brought us the opioid crisis, and were outraged by the phenomenon of “agency capture” and the pervasive control of private interests over Congress, the media, and the scientific journals.
 
A Letter to Liberals is Robert F. Kennedy Jr.’s, challenge to “lockdown liberalism’s” embrace of policies that are an affront to once cherished precepts.

DenialDenial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future

By Mark Blaxill and Dan Olmsted

Even as the autism rate soars and the cost to our nation climbs well into the billions, a dangerous new idea is taking hold: There simply is no autism epidemic.

The question is stark: Is autism ancient, a genetic variation that demands acceptance and celebration? Or is it new and disabling, triggered by something in the environment that is damaging more children every day?


Team Kennedy Explores the Future

Team Kennedy Header
It’s official. Read CHD’s announcement here.

 

Note:  Age of Autism has always followed the Presidential elections. Do you remember when Sam Wessels used to talk to every candidate who came to Iowa? We welcome insights, comments and reports from readers and contributors. We will never endorse a candidate, as we are a non-profit. Pro-choice is as important in the voting booth as it is at a doctor's office, after all.  Robert Kennedy, Jr. has a site that discusses his possible Presidential run called TeamKennedy.com.  Please pray for Bobby's safety, and that he can make decisions from a place of courage and love.

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From TeamKennedy.com

Freedom First

Robert F. Kennedy, Jr. has spent his life fighting for American democracy and the liberties guaranteed by the Constitution. He has battled against corporate greed and government corruption to protect our children, our health, our livelihoods, our environment, and above all, our freedom.

With integrity, courage, and self-sacrifice, he has led Americans in an ennobling fight to restore our country as the exemplary nation, and to end the toxic polarization that divides us and enriches the elites.

His steely character and unique history fighting crooked bureaucracies make Bobby the only person who can bridge the divide and fix our country.

Continue reading "Team Kennedy Explores the Future" »


SPELLERS Wins Phoenix Film Festival Awards

Spellers Award
Jamie, Cade and Vince Celebrate

From Levi Quackenboss.  Subscribe to Putting the Boss in Quack on Substack.

Congratulations on the fantastic reception! If you're using RPM or Spelling2Communicate, let us know. I'm using it with Bella. Nothing fancy. We don't travel to sunny destinations. Our closeups are in the bathroom mirror. We use handmade letter boards while seated on a Goodwill sofa in our rented ranch. And Bella is making progress! You can too. XOX

The kids of SPELLERS just swept the Phoenix Film Festival

The world is about to find out.

If you’re following along with the wild ride of the non-speaking autistic kids and young adults who are now fully and eloquently communicating with their families and teachers through Spelling-to-Communicate, you heard a few weeks ago that their documentary SPELLERS was an official selection to be screened at the Phoenix Film Festival. The festival ran from March 23rd through last night, April 2nd, and SPELLERS had four showings: March 31st, April 1st, and twice on April 2nd—with three of the shows selling out.

I woke up this morning to see photos of these three proud grins and trophies in hand. (Read more below the jump.)

SPONSORED CONTENT

UnderestimatedSpellers is based on Underestimated An Autism Miracle by JB and Jamie Handley.  You can purchase a copy here.

Underestimated: An Autism Miracle will touch your heart, inspire you, remind you of the power of love, and ultimately leave you asking tough questions about how many more Jamisons might be waiting for their chance to be freed from their prison of silence, too. And, for the millions of parents of children with autism, the book offers a detailed description of a communication method that may give millions of people with autism back their voice.

Continue reading "SPELLERS Wins Phoenix Film Festival Awards" »


SPELLERS has documented a miracle

Spellers The MovieWe're pleased to share this emotional review of Spellers, The Movie, by Levi Quackenboss. Subscribe to the Substack here.

SPELLERS has documented a miracle

For my friend, JB Handley, and his champion speller, Jamie.

I know you all will ask when and where you can see this life-changing film. I’ve heard rumors that it’s launching April 2nd, on World Autism Day. Stay tuned, I’ll let you know how see it. In the meantime, follow the SPELLERS Instagram and sign up for the SPELLERS mailing list for news.

When the opening scenes of SPELLERS began, for a moment I doubted that I would make it through the film that day. JB Handley has been many things to me in our seven-year friendship. A force. A shield. A contributor, a voice, a friend. A big, strong, soft-hearted human in need. A ray of hope who needs an occasional spiritual pep talk to make it through a dark day. I haven't met JB's son, Jamie, but I've said a few words to him when JB puts our calls on speaker. JB tells me about Jamie's big smile as he listens. Jamie is autistic and doesn't talk, and he's been that way since he was a toddler.

The film opens with another young man, Cade Larson, filled with joy, cruising past the camera on a surfboard.

I've had the pleasure of spending several days with Cade, over a couple of trips. My children have sat with him at the dinner table, munching on tater tots at the country club near his Minnesota home. Cade is also autistic and has echolalia but otherwise doesn't speak. While he helplessly repeats everything said to him, you know he means "yes" with the enthusiasm he infuses into his echos. Yes, he wants all of us to go on the boat. Yes, he wants two orders of tater tots for dinner tonight. No, he doesn't want the dogs around.

Continue reading "SPELLERS has documented a miracle" »


Start Popping Spellers The Movie is Coming!

Spellers The MovieA couple of years ago, I got a call from JB Handley (hey, this sounds familiar!) and he was wicked stoked! That's a little Massachusetts meets West Coast parlance for wildly excited. His son had begun this thing called "spelling," and he was having success.  Life changing success. JB being JB, wanted to make sure I knew about spelling for my daughters. He wanted, and wants, EVERYONE to know that spelling can open the communication channel for even the most profoundly autistic individuals. He and his son Jameson wrote Underestimated: An Autism Miracle (from Skyhorse Publishing.) I am spelling with my youngest daughter. It's a slow process for her because of her vision and gross motor planning. But I can see that she will become successful in time, in her own way.

Subscribe to the Spellers alerts to learn when, where and how you can watch the movie. We'll keep you posted with updates.  Spell on!




Ed Dowd's Cause Unknown can't be updated fast enough as we see a steady stream of sudden heart attacks and deaths in the news. Dr. Robert Malone's Lies My Government Told Me and the Better Future Coming speaks to the power of action and personal growth based on knowledge.  See you on Sunday with Cathy's post.

Cause Unknown Hardcover
Kindle Edition



Lies My Government Told Me Hardcover
Kindle Edition


The Beautiful Colors of Jeremy Sicile-Kira

Beautiful ColorsJeremy Sicile-Kira is an artist who is on the spectrum - he paints with bursts of color. As he sees life. Readers will know his mother Chantal Sicile-Kira, a talented author whose books on autism topics have helped so many families. Congratulations to Jeremy for the recognition on POV (Point of View) on PBS.  From the website:

Jeremy Sicile-Kira uses painting to transcend his disability and communicate his dreams to others. This film accompanies the broadcast premiere of I Didn't See You There.

When a circus tent goes up outside his Oakland apartment, a disabled filmmaker launches into a meditative journey exploring the history of freakdom, vision, and (in)visibility. Shot from the director's physical perspective — mounted to his wheelchair or handheld — I Didn't See You There serves as a clear rebuke to the norm of disabled people being seen and not heard. Winner, 2022 Sundance, U.S. Documentary Director and Grand Jury Prize nominee.  Visit the site here.


Become an Age of Autism Angel Donor

11-111Good morning, on 11/11. Happy Veteran's Day. 11:11 is considered by many to be an angel number. It has been very important number in my life. Perhaps yours. We have an ANGEL DONOR in Laura Hayes, AofA contributor and supporter who has generously upped her annual match to a full $10,0000. Meeting this campaign would be... heaven for us.

Not so angelic, is that we've stalled in our contributions after a great start.

Our work is more important than ever as families smash into and learn to grind out the challenges that autism brings throughout the lifespan. The cute girls I used to write about are 22, 26 and almost 28 years old now. Once school ends, huge new hurdles arise. Age of Autism will NOT stop telling the truth about autism. I need your help, in this our 15th year.

We use DonorBox for our online donations, and you can always send a check to Autism Age PO Box 110546, Trumbull, CT 06611. Donations are tax deductible - EIN is 47-1831987. We also accept CRYPTO through Coinbase and other financial instruments. Thank you. 

Donate

Give the give of knowledge this holiday season. New books from CHD and Skyhorse Publishing:

Profiles of the Vaccine-Injured: "A Lifetime Price to Pay" (Children’s Health Defense)
Are vaccine injuries really “one in a million,” as governments and public health experts constantly tell us? This comprehensive look at the evidence by Children’s Health Defense, illustrated by nine real-life stories of serious vaccine injury, exposes health agencies’ soft-pedaling of vaccine risks as a dangerous lie.

Continue reading "Become an Age of Autism Angel Donor" »


Tiny Home, Big Solution

Hope and futureHere's a story that will warm your heart and provide a spark of hope. Aging and autism is one of our most important topics. We're in uncharted territory, as the epidemic of the 1990s and forward begin to enter their 20s, 30s and soon, middle age. That means parents will be senior citizens, trying to provide 24/7 care in many, perhaps most, instances. Siblings might take over. Thanks to Judy R for sharing this story. 

She Built a $15,000 Cottage in the Back Yard For a Brother With Autism: ‘The change has been incredible’

A woman built her brother a little house in her back garden and says it’s been a “game-changer” to give him the independence he needs.

Tiffany Chou moved back to Hawaii from New York City to look after her 33-year-old brother, who has autism, after hearing that he was unhappy in his residential home.

The siblings, who are both adopted, hadn’t lived together for 15 years, so Tiffany was apprehensive about what it would be like because Chris’s behavior could be “challenging”.

To better deal with that, the 36-year-old sister and her boyfriend decided to build Chris his own cottage in their back yard after moving to Maui.

“I didn’t really know what I was getting myself into when I moved back and took in Chris,” said the accessory designer. “He can be a bit noisy and overwhelming so we decided if he had his own independent space, just seconds from us, that would be ideal.”

There was a little structure in their garden, which they tore down to begin the construction—and she and her boyfriend managed to put the cottage together for just $15,000.

Chris got to chose the colors of his house and helped out initially with the build, which was completed in three months.

In August, he moved in and now loves his new digs.

“He absolutely loves it—and the change has been incredible,” says Tiffany.

“He’ll do his dishes without prompting. It’s really helped him be more independent.”

They outfitted the home especially for his quirks, too.

“Chris is the thirstiest person you have ever met so he is constantly up in the night drinking water and needing the toilet, so we made sure his bathroom and a water tank was right by his bed.”

His kitchen has an induction cooktop to make sure it’s not left on and Tiffany prepares his food ahead of time, in daily portions, which he keeps in his fridge.

The home—which was built out of reclaimed materials, and fitted with second-hand furniture to keep costs low—has given Chris a newfound independence. (See the home in the video below.) And Tiffany and her boyfriend have their own space, which is essential, especially because they welcomed their new daughter, Luna, last month.

“He loves being an uncle and is great with Luna.”

“It’s been a game-changer for all of us—I don’t have to constantly prompt him to do stuff anymore. Read more here.

Note: Our Matching Gift Fall Campaign is in full swing. Please consider a tax-deductible donation. Paper: Autism Age, PO Box 110546, Trumbull, CT 06611 Thank you.
Donate###

Click the cover or title to order:

Profiles of the Vaccine-Injured: "A Lifetime Price to Pay" (Children’s Health Defense)
Are vaccine injuries really “one in a million,” as governments and public health experts constantly tell us? This comprehensive look at the evidence by Children’s Health Defense, illustrated by nine real-life stories of serious vaccine injury, exposes health agencies’ soft-pedaling of vaccine risks as a dangerous lie.

Continue reading "Tiny Home, Big Solution" »


AofA $10K Matching Gift Annual Fundraiser

Thank you typeNote: Today we're launching or annual fundraiser with a colossal, amazing, generous matching gift from Laura Hayes. Laura and her husband will match $10,000 between now and the end of November. Please see her kind words below. We use DonorBox for our online donations, and you can always send a check to Autism Age PO Box 110546, Trumbull, CT 06611. Donations are tax deductible - EIN is 47-1831987. Thank you. 

Donate


Dear AoA Friends and Readers,

My husband and I will be doing another matching donation campaign here at AoA again this year, with one important difference. Instead of a $5,000 matching campaign, we are doubling it this year to a $10,000 matching campaign. 
 
Why? Because Age of Autism continues to be a much-needed bastion and beacon of publishing important and truthful information that mainstream media refuses to publish. Furthermore, it doesn't sweep the Vaccine Injury Epidemic, which includes the "Autism" Epidemic, under the rug. It shines a light on it.
 
Fun facts:
 
AoA is not beholden to corporate sponsors that dictate the content it is allowed to publish. 
 
AoA does not censor information that challenges the status quo, "experts", or government-sponsored propaganda. Instead, AoA publishes it. 
 
AoA permits dialogue, the exchange of ideas, and differing viewpoints. It does not try to control the conversation, rather, it encourages it by providing a forum for it. 
 
To that end, it is our hope that each and every reader of Age of Autism will make a donation to not only keep AoA up and running, but also to encourage and support AoA's Managing Editor, Kim Rossi. As readers know, Kim is a single mom to not one, not two, but to three young adult daughters with Autism. Our donations enable Kim to keep AoA going. She devotes many hours every week to writing, publishing, posting readers' comments, maintaining the website, and more.

Continue reading "AofA $10K Matching Gift Annual Fundraiser" »


Special Needs Trusts or Able Accounts?

Hope and futureFinancial planning for a lifetime of care is a burden few understand outside our community. We don't get a roadmap of how to help and support our loved ones.  Rich, poor or in between, we'll have to make decisions. CTFSN is a Connecticut-based special needs organization. The seminar is from a Northwestern Mutual special needs financial planner, and the info will be applicable across the country. There are so many questions and pitfalls regarding finances before and after our children turn 18.  Kim

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Special Needs Trusts or Able Accounts?
Financial Planning Workshop
Hosted by CTFSN
October 12th, 2022 | 12 :30 PM
Via Zoom
Financial Planning for the future of your child. Stephen Ehrens, CPA and Wealth Advisor from Northwestern Mutual will discuss, Estate planning considerations, Special Needs Trusts, Wills, Benefits, i.e. SSI and Medicaid, Insurance and Investments. Also, how an “ABLE Account”, will provide a tax-sheltered vehicle for your child.

Featured Speaker:
Stephen Ehrens CPA, Wealth Management Advisor for Northwestern Mutual. Specializes in financial planning for
families with children with special needs and disabilities.  To learn more about Stephen, please visit:
www.stephen.ehrens.com

Please email [email protected] for the Zoom Link and for materials after the webinar.


Empowering Ability Presents a Life Plan Online Workshop

Lifeplan workshopTo do list:  Buy fresh fruit and toilet paper. Schedule oil change. Plan the next 60 years of life for Mia, Gianna and Isabella.

No sweat.

I saw this online workshop from Empowering Ability on Facebook, and thought it's worth sharing. As ever, I think that the autism community will find some (maybe a good deal) of planning for special needs will not work for us. Rather than be a complete Debbie Downer, I'm trying to look forward with hope and confidence that my adult daughters will have a fulfilling life.

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Click Hear to Learn More from Empowering Ability

What you’ll discover in this (free) 'Life Plan Workshop':

1) Understand the REAL reasons why you're feeling stuck so that... you can move past the fears that are stopping your loved one from living their own adult life.

2) Discover "Awesome Ordinary" life possibilities so that... your loved one can have more opportunities to build more relationships, contribute in the community, gain employment, and create a home of their own.

3) Learn the 7-step proven planning pathway so that... you have clarity on the exact steps to take to support your loved one to get off the "Special Needs" path and live an "Awesome Ordinary" adult life!

**You will get this live training, plus bonus tools and resources! You'll also get access to the live training replays.


American Speech Language Hearing Association Denies Spelling Efficacy

Jb and jamisonWe're used to being told that autism has no treatments or cures. We've taken beatings for decades regarding therapies and medical interventions, and guess what? Despite these beatings, our morale ALWAYS improves, because we never give up and rarely listen to so called "experts" like the nudniks at the American Speech Language and Hearing Association (ASHA.)   Experts in the case of "evidence based" science are often folks who have hit the jackpot known as Insurance Reimbursements for offering the therapies that universities have been paid to study and rubber stamp by industry. My daughters had school based speech therapy from age 3 through 22. Their therapists were lovely women ( we did not have a single male speech therapist in 57 cumulative school years.)  They meant well. They imparted what they were taught. They were kind. They tried. They made ZERO headway. I mean zero. Nothing the school SLPs did boosted my girls' ability to communicate or to make their needs known. Not even the exalted iPad - with the $300 apps one friend described as dropping 100 flashcards on the floor and expecting a sentence. Even worse with school based Occupational Therapy. Or as I call it, "The Pencil Holding Guild."  Not until we had a private therapist using reflex integration did we see benefits from OT.  Work she could NOT do in a school Underestimatedbased setting.

JB Handley will tell you more about how the ASHA which is the organization that is supposed to champion communication, shuts it down.  His book, cowritten with his son Jamie, is our AofA Book Club book of the day. We're featuring books on our Instagram, and in our sidebar, which nobody sees any longer because we all read on mobile devices.

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Excerpted from JB's blog, click to read the full post with video and much more ASHA tells 50 million nonspeakers, “you aren’t capable.”

September 17, 2022

PORTLAND, Oregon—We’re finishing up the filming for our new documentary, SPELLERS, a movie inspired by the book my son Jamie and I wrote in 2021 titled Underestimated: an Autism Miracle. Briefly, it's the story of the miraculous discovery my family made that our 17-year-old son Jamie was cognitively brilliant but “trapped” inside his own body. What freed him from this self-described “silent prison”? A communication method known as Spelling 2 Communicate, heretofore referred to as “S2C.” Here’s a great video primer on S2C:

Today, the miracle with Jamie continues unabated. Jamie no longer needs anyone to hold the keyboard for him. As you can see in the picture at the top of this post, Jamie is able to spell his thoughts and feelings independently, even with two cameramen filming his every move (well, you can’t actually see it yet, but trust me you will soon, that scene is in the movie!). At home, without the Hollywood klieg lights on, it gets even better: Jamie is now typing with two hands on a flat keyboard, communicating the way most of us do.

I’m guessing half the people reading this article don’t know what the ASHA acronym stands for (thanks for sticking with me!) so here you go: American Speech Language Hearing Association. Basically, it’s a trade group that represents more than 200,000 speech language pathologists, is based in Rockville, MD, and is run by a woman named Vicki Deal-Williams.

For those of you not in the autism world, Speech Language Pathologists (we call them “SLPs”) are a big deal. They work with our kids. They try to help them talk. Some of them are great, amazing people. And, those who call themselves SLPs only do so for one reason: they have received the accreditation of ASHA. These credentials allow them to refer to themselves as SLPs, and these hard-earned credentials are everything to them. Therefore, what ASHA says carries huge weight with them, and they sure don’t want their credential pulled by not marching to their tune.

And, in 2018, ASHA did something with their weight that has had a giant impact on the roughly 50 million nonspeakers in the world: they issued a proclamation stating that what my son was doing on a keyboard was a magic trick, was not coming from him, and that SLPs should run, not walk, away from ever using a letterboard and should actively discourage parents from trying S2C, too.... Read more here.







Grief in Those with Intellectual Disability

WeepJust in case you didn't have enough to worry about, this report shared by Safeminds.org hammers home our fears. Fears that are very much founded in reality. We half joke that we can never die. If only we could find a miraculous way to live just one day longer than our children in their golden years. Maybe holograms will be affordable.

Grief Symptoms Are Often Prolonged and Onset of Symptoms Delayed in Those with ID

Losing a loved one is one of the most painful and distressing experiences that people encounter. Most individuals experience a typical bereavement period where they face feelings of sorrow, numbness, and anger. Gradually, these emotions fade. However, for some individuals, these feelings of loss are debilitating, long-lasting, and do not improve over time. This agonizing condition is known as complicated grief (CG). A new systematic literature review has investigated how this phenomenon affects individuals with intellectual disabilities (ID). The review’s key finding indicates that CG is prevalent in people with ID and is even more frequent in these individuals compared to the general population (33% vs. 9.8%). The review’s authors highlight that CG is a clinically significant condition within the ID population and suggest that doctors should be aware of the diagnosis. The study also discovered that grief symptoms for those with ID are often prolonged, and the onset of symptoms can be delayed. Consequently, due to these factors, CG is likely to be missed or misdiagnosed. Additionally, the review discovered that people with ID experience both traumatic grief and separation distress symptoms. However, separation distress symptoms are more frequent, highlighting possible vulnerabilities to attachment difficulties. Ultimately, the review calls for the development of valid and reliable CG assessment/screening tools for people with ID. These tools will allow for the accurate identification of CG cases and are crucial for developing appropriate treatment in this particular population. 


Communication Means Freedom to Shine

Charles Mury NVN
Source www.nine.com.au/

"All people with autism are smart and deserve respect even if they cannot communicate." Charles Mury

Many individuals with autism are using a letterboard to communicate with heart swelling success. This story from Australia profiles the meteoric success of using a keyboard for a young man who was "assumed" to have the intellect of a Kindergartener.   The professionals in Speech, Occupation Therapy and Behavior could be doing so much more - work that would change the course of a life.  We MUST press schools to presume competence.  Charles is quoted: All people with autism are smart and deserve respect even if they cannot communicate".  Parents can not do everything.  We are only human.  But we never give up. Congratulations to Charles Mury and his diligent Mom.

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A New South Wales student who was once unable to communicate has earned a prestigious education award.

Charles Mury was among an elite group of 40 selected to receive a minister's award for excellence, open to students across the state's public education system.

Education Minister Sarah Mitchell said Charles was the first ever recipient on the autism spectrum.

He was diagnosed with autism before he turned three and years of therapy followed.

At 16, Charles he was regarded as having the academic ability of a kindergarten student.

"The level of communication was highly limited, only some gestures of what he wanted and what he needed," father Chris Mury said.

Charles' mother, Melanie, said process had been "glacial" before her son had a breakthrough 18 months ago, which experts said was triggered by the emotion of his grandmother's funeral.

"We had a very long meltdown and in desperation I said to him 'help us help you'," Melanie said.

"(I gave him) pen, paper, and we had our very first conversation."

From that point on, Charles' words and ideas have flowed and flourished, with the help of his teachers at Metford's Hunter River Community School.

Now at the age of 18, Charles has finally found his voice with the help of a computer.

"Communication has changed my life for the best. It has saved my life," he told NBN News.

"All people with autism are smart and deserve respect even if they cannot communicate."

  Read the full news report & watch the video here.



Order a Big Red Safety Teacher Toolkit from National Autism Association

Teacher-toolkit-image-lrNo one looks out for our kids' (young and old) safety like NAA>

The National Autism Association’s Big Red Safety Teacher Toolkit® is a free-of-charge safety toolkit for educators in need of wandering-prevention tools.

Please review all of the information below before submitting your application.

To apply for an NAA Big Red Safety Teacher Toolkit®, you must:

  • Be a school administrator, teacher or aide working with individuals with an autism diagnosis.
  • Be employed at a school within the U.S. and provide the school address for shipping. (Homeschool programs are not eligible for this toolkit, please apply for a Big Red Safety Box.)
  • Agree to the terms and conditions stated in the application.
  • Apply only once. Multiple requests cannot be processed, limit one toolkit per school.

1st Day Blues

EA7A2714-E180-40FB-90A6-7DA08B8DCC31The 1st days of school photos are taking over Facebook. For autism families, this is a tough time of seeing the differences. We do not think our kids are less. Still, it stings to watch the preschool gap grow into a chasm year after year. And we are allowed to admit our truth. I see you, autism family. All of you.

 


The Last First

1D53EACB-8529-44EF-922B-2677B6B308F5These are my girls’ school photos the year Age of Autism was launched. We debuted in November of 2007, and announced AofA at the National Autism Association conference in Atlanta, Georgia. Dan Olmsted won an award for his work on behalf of the vaccine injury community.

Yesterday was my youngest’s last first day of school. She turns 22 next month. I don’t agree that time flies. It seems to have gone on and on and on forever in a blur of work, struggle, conquest, tears, laughter, work, struggle, laughter, tears, hopes, dreams, disappointments, change and more change all topped off with a never ending dollop of worry. I rather agree with my older daughters' facial expression assessment during their photo shoot. "Hmmm, not too sure about this."

I had conversation last week with a friend whose son turns 18 on the same day that B turns 22. She is struggling with yet another milestone that is so different for many of our kids, compared to their typical peers. From this we know. I hope I was able to tell her that it's OK to grieve and mourn what we thought our kids' paths would be, all while still adoring and accepting them exactly where they are today. And that every milestone can be painful, from diagnosis, to leaving for Early Intervention, to Kindergarten, Middle School, High School, Transition and then into adult services. It's tough. It hurts like hell. And that's OK. That's our journey. We travel together, here at Age of Autism.




Autism After 22 The Secret

B4C8ED4B-2839-4C37-A122-6D83EE1788FE

I saw this cartoon and had to share it with readers. As the epidemic that began in the early 1990s ages into adulthood, the trajectory of media coverage has yet to catch up. Indeed, it was thwarted by the rise of the form of neurodiversity that whitewashes away the negative aspects of autism. Has your child aged out into adulthood and what's the current life and future like? It's a mountain of work - again - for most of us. And what about adults with autism? For the severely affected, there's a bleak outlook. For those who differently affected, including those who can work - there's challenge after challenge. There is no "easy" version, just different flavors of worry. Where to begin?


Autism One Returns August 18 - 21

AO Back to the basics
Autism One was a more than a conference in its hey day, it was yearly retreat where autism parents could meet, greet, learn, eat, drink (mmm hmmm) and be merry in good company.  Most of us knew each other from Yahoo groups. The conference returns next week.  As you may recall, Ed Arranga passed away earlier this year, a huge loss for the community. We met Robert Kennedy, Jr. for the first time at Autism One, astounded that he understood our topics and was willing to stick his neck out for our kids. We watched film debuts. We met celebrities. We dodged neurodiverse spies and spiteful journalists. Ah... good times.  We old timers can forget that parents are STILL getting the gut punch diagnosis, at an ever quickening pace. Let's share what we know with them in the hopes they will strive to do more than the basics.

Learn more about the conference HERE.

AutismOne is a nonprofit organization dedicated to all that is autism.

AutismOne is here to support a parent when you are searching questions about autism, medicine, nutrition, schooling, social skills, recreation, and more. AutismOne has access to a variety of resources to connect you with, whether they are doctors, specialists, or parents, who have successfully experienced improvements. Or AutismOne can simply listen. We are all in this together. AutismOne knows you love your loved one whether young or old.

From AutismOne: SUPPORT AND EDUCATION FOR PARENTS.

www.AutismOne.org


Ch ch ch ch changes! Reader Reader What Do You See?

B0358D81-D92B-4FDA-8BE5-0A3A584BAA49Progress sometimes comes one - leg - at - a - time.

I snapped this photo yesterday morning. You see a woman with gorgeous hair wearing a pink top and khaki shorts, while holding her stack of papers filled with hundreds of tiny snapshots printed, cut and taped from YouTube. I see a woman who is NOT wearing denim shorts for the first time!!   Miss M wears a magenta pink top and jeans or jean shorts every day of the year. It's her uniform. And I'm fine with it. Every so often, I tempt fate and try to "encourage" another sartorial choice. Instead of holding open denim shorts, I grabbed a pair of her sister's khaki shorts and hoped for the best.  Like a hot knife through butter - she slide in one leg then the other. Yeah, she gave me a jaundiced eye as she did so - but... KHAKI SUCCESS!  She didn't complain or protest!

XOX


Support Age of Autism on Amazon Prime Day 2022!

When-is-amazon-prime-day-2022
Autism Age AMAZON Smile Donation Link

July 12 and 13 are AMAZON PRIME DAY. If you are an Amazon shopper, Mr. Bezos will PAY US through Amazon Smile. I'm sure he'd be thrilled to support families facing the challenges of autism, doncha agree?  I understand that some readers avoid Amazon completely.

You MUST use the AMAZON SMILE website when you order - and here is our link - Autism Age AMAZON Smile Donation Link  in order to designate us as your charity.  I hope you also include our friends at NAA and TACA for your purchases. But for the Ferrari or other big ticket purchase? AofA all the way!  Sorry, Wendy, sorry, Lisa. 

We're re-vamping our donor system - we'll be updating online options soon. In the meantime, an old fashioned check always works and keeps me working. THANK YOU.  Payable to Autism Age and tax deductible.  PO Box 110546, Trumbull CT 06611


Snug as a Hug on the Rug

FF654A11-FDAB-4A4F-A820-D7191F2BFF4FCheck out this cool squeezey boat thing my daughter got for her birthday. It’s 80” long, made of super durable material like an inflatable bed.  It's called the Comfy Hugging Peapod by BouncyBand. The bottom and sides are inflated, and provide Bella Steam pressure all along the body. I didn't think any of my girls would sit in it. But after just minutes, we were batting .666! (Uh oh.) 2 of my 3 enjoyed it from the get go. One is reticent, but I think she'll come along.

We owned a Steamroller  many years ago. One daughter liked to roll in and and stay for the pressure.  We have a Yogibo bean bag that's a complete bust. No one likes it.

I have 2 of 3 peas able to relax in a pod in my family room. And that ain't bad!

Thanks to Gianna's best (and only) Auntie!!

Bouncyband pea pod

 

 

 

Are you using sensory aids in your home?


Apply Now for National Autism Association's GIVE A VOICE Grant

Give a voiceFrom the best people on the planet - Wendy Fournier and the kitchen table team at National Autism Association. NAA has never stopped finding ways to directly help families cope with and yes, thrive despite the challenges of autism for their loved ones. Got a toddler just diagnosed? Please get to know NAA. Old timer? Never forget that NAA always has your back.

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GIVE A VOICE PROGRAM

The intent of NAA’s Give A Voice program is to provide the opportunity for meaningful, effective communication to individuals with autism who are nonspeaking or unreliably speaking, and whose communication challenges put them at increased risk of injury or harm.

We are thrilled to announce that we are now offering access to certified practitioners in S2C (Spelling 2 Communicate) and RPM (Rapid Prompting Method) while continuing to offer our iPad AAC program.

S2C and RPM involve the process of communication through spelling on a letterboard. To learn more about letterboarding and how it works, we recommend visiting i-asc.org as well as reading the recently-released book “Underestimated: An Autism Miracle” by J.B. and Jamie Handley.

Grants for spellers will provide up to 4 sessions with a practitioner of your choice along with a set of letterboards.

NAA’s Give A Voice Program also can provide qualifying individuals with an assistive communication device including:

  • A 32GB Apple® iPad® (9.7″ – Wi-Fi only)
  • AppleCare+ Protection Plan
  • Avatalker AAC Augmentative and Alternative Communication Software app
  • Protective Case

To learn more about Avatalker AAC, please visit http://www.avatalkeraac.com. Avatalker AAC

iPad grant recipients, please use this link for helpful support resources from Apple in both English and Spanish.

We have very limited funding for this program.  Every application is carefully reviewed and all information submitted is verified by NAA staff.   This program is intended for families who are in dire need of financial assistance and are otherwise unable to attain access to these communication methods.

Give A Voice Applications are now being accepted.

Click here to download an S2C/RPM application.

Click here to download an iPad AAC application.

Funding is always needed for this program.
To become a corporate sponsor, or make a
tax-deductible donation, please click here.


Required Viewing - Like It's 1974

Free_to_Be..._You_and_Me_(album_cover)A year ago, Americans lost their jobs and their right to attend restaurants, concerts, sporting events and other activities if they did NOT choose the Covid vaccine.  Americans did not have the right to say no, which is a choice. Yesterday, we had another version of change in choice with the SCOTUS decision on Roe v. Wade. The right to say yes was affected. The divisions between Americans are growing by the minute. Up is down. Left is right. Right is middle. Middle is long gone. Imagine my surprise when my daughter started listening to a single song on YouTube, a song I hadn't heard in many years. Free To Be You and Me. The song debuted with a book and full album in 1974 as a way to bring Americans TOGETHER in understanding and acceptance. Back in those days, the topics were "simpler." Black, white, boys and girls. End racism. End sexism. Seems quaint by today's complicated standards. But I think that Free To Be You And Me has more value then ever. As a look back, it shows we could and did make progress. As a look today, it shows we still need more. One group near and dear to our hearts, has been left behind in the society of free choice - those who chose not and/or are unable to vaccinate per the CDC guidelines. If medical choice matters, it has to matter from all sides, does it not?  If you've never watched Free to Be You And Me - or listened to the lyrics of each star-studded song, I encourage you to take trip back to 1974.

Free to Be... You and Me is a children's entertainment project, conceived, created and executive-produced by actress and author Marlo Thomas. Produced in collaboration with the Ms. Foundation for Women,[1] it was a record album and illustrated book first released in November 1972 featuring songs and stories sung or told by celebrities of the day (credited as "Marlo Thomas and Friends") including Alan Alda, Rosey Grier, Cicely Tyson, Carol Channing, Michael Jackson, Roberta Flack, Shirley Jones, Jack Cassidy, and Diana Ross. An ABC television special, also created by Thomas, using poetry, songs, and sketches, followed two years later in March 1974. The basic concept was to encourage post-1960s gender neutrality, saluting values such as individuality, tolerance, and comfort with one's identity. A major thematic message is that anyone—whether a boy or a girl—can achieve anything.




Elizabeth Bonker From Non-Speaking Autism to Rollins College Commencement Valedictorian

Classof22Elizabeth Bonker is raising her voice! Join us in celebrating her success with letterboarding and typing to share her brilliance and beauty with the world. From the Rollins College website: Raising Her Voice

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May 05, 2022

By Elizabeth Bonker ’22, as told to Stephanie Rizzo ’09

Elizabeth Bonker ’22 long struggled to communicate with a world that didn’t always understand or accept her. Now, armed with her Rollins education, she’s starting a nonprofit to bring communication assistance to those affected by non-speaking autism.

At 24 years old, Elizabeth Bonker ’22 already has a resume to which most would only aspire. The social innovation major, English minor, and 2022 valedictorian is an author, activist, lyricist, and founder of the nonprofit Communication 4 ALL. She’s given a TEDMED talk, starred in a documentary, and helped countless others find their voices, all while graduating with honors from Rollins at the top of her class. And she did it all without speaking a word. Bonker is affected by non-speaking autism and communicates solely by typing, and she has a lot to say, especially about the ways people like her are perceived. Hear from Bonker in her own words about her trials and triumphs and the impact Rollins has had on her life.

I was born healthy and could speak as a toddler. Then, at 15 months old, my words were inexplicably taken from me. My parents took me to Yale Medical School, where I was diagnosed with autism. Despite what the doctors said, my parents never gave up on me. They recognized that I was a thinking person trapped in a silent cage.

It was only when my grandmother happened to see an episode of 60 Minutes that things started to change. The show aired a segment on Soma Mukhopadhyay, the creator of a system called the rapid prompting method (RPM) designed to help autistic non-speakers communicate. My mother reached out to her, and we were off to Texas. I was 6 years old, and we had found my Annie Sullivan.

Now, I communicate by typing on a keyboard. But when I first started, I spelled out words by pointing to letters on a letter board. People with non-speaking autism often have difficulty initiating movements, so learning to type is tedious. With months of practice, I made progress, and the world began to open up to me. I started writing poetry because it allowed me to say more in fewer words. 

Please visit the Rollins website to read more about Elizabeth's inspiring journey- Raising Her Voice


Invitation to Sponsor a Ukrainian Autism Family Coming to Vermont

UkraineSeeking SPONSORS for Ukrainian families arriving in Vermont. A dear friend and colleague Dr Theresa Cianciolo is purchasing a former hospital in Northern Vermont to create a "refugee" center. Theresa owns a home in Kyiv, she moved her family there to continue her work with orphans and children with special needs. She returned in February, as the war was imminent. Now the work is coming HERE to the USA. Sponsorship is primarily for the paperwork required.

Please email Kim at [email protected] or [email protected] if you think you might be interested. Thank you. XOX


Do You Ever Really Rest?

91A3DA1B-5E76-4A99-A055-B90900EBAD6EI saw this graphic on Insta yesterday. Haven't we all used our never ending exhaustion as a badge of autism honor? But how long can we manage before the badge simply weighs too much and we collapse? The Puritan work ethic has always been a American "thing." Autism families have taken it to an extreme.

In Connecticut we have pretty good DDS budgets - assuming your son or daughter with autism has a testable IQ under 70. If 70 or above, you're on decade long wait list for the handful of autism waivers. Other states are far worse than Connecticut.  Are you aware of the wait lists in your state, or country, if you're not in the USA?

Having budgets is a blessing. Finding staff is a curse. I have dollars for respite, and I self-hire. this means that either I have to leave my house, or I have to send off my 3 daughters with staff to a hotel - that I have to fund. Respite dollars are only for staff. So we stay home. A LOT. Together.

Tell us how you are planning, hoping, worrying, dreaming of the future for your loved one with autism. I think we'll be exhausted until our last breath. Such is the plight of caregivers, and women in particular.




We Need Puzzles Bakery and Cafe in Schenectady

Puzzles exterior Puzzles treats

Funny how people come into our lives and the timing. Earlier this week, I wrote about an autism Mom who was facing problems with her daughter's dental hygiene. Well, that Mom has another daughter who opened the amazing Puzzles Bakery and Cafe where she employed people with autism and launched awareness right in Schenectady, New York, near Albany. I visited Puzzles on March 11 back in 2016, and wrote about how fabulous it was then.  And will be AGAIN soon, we hope.  On a darker note, Sara got blowback because she used the Puzzle theme for autism.  The Neurodiversity crowd in action. Imagine causing grief for a young woman trying to help the community over... a symbol?   Sara had to close because of Covid, but the hope is that it will reopen.  In fact, the local paper featured Puzzles this week.

Foss: Puzzles Bakery and Cafe remains closed in Schenectady, but hopes to reopen

...What makes Puzzles’ ongoing limbo so distressing is its human toll. Puzzles Bakery closed

Pratt conceived the restaurant as a place where developmentally disabled adults would work side by side with their neurotypical peers, attaining the meaningful, real-world work experience that too often eludes them.

###

Written March 13, 2016 by Kim Rossi

Sometimes dreams come true. Thoughts and ideas on paper spring to life before your eyes.  For instance, I'm a big Harry Potter fan.  I can recall watching the very first movie in the theatre and marveling at how each scene turned the book into a cinematic reality before my eyes.   

Puzzles Sign CupcakesWhen I was a young woman, I joined the Junior League and volunteered at a local Children's Museum. One of their exhibits was "The Great Green Room" from the classic book, Goodnight Moon.   I had no kids of my own, but I knew the book, of course.  And when I walked into the room for the first time, I was transported into the pages. 

As my girls have aged into adulthood, I've been writing the story of their future in my mind's eye. A bakery with an autism theme has been a dream of mine - far fetched - but still, a dream.

On Friday night, I saw firsthand how that dream would look when I had the great honor of speaking at Puzzles Bakery & Cafe, Puzzles Micin Schenectady, New York, whose owner, Sara Mae Hickey is an autism sibling.  From their website:

In addition to serving delicious food, the bakery-café provides adults with developmental disabilities with an opportunity for personal growth, as well as a source of income, social interaction, and a sense of purpose.


Sara Mae has done everything right. And I mean everything. From the design of the signage, to the soothing, bright cheerful interior (with a community room) to the menu of fun, healthy and delicious foods, Puzzles would be a great bakery and cafe even without the autism theme.  But that theme is truly the icing on the cupcake.

I think the autism siblings will change the world for our kids.  They are battle tested.  Some will become advocates and warriors on behalf of their brothers and sisters.  Like Sara Mae Hickey has for her sister. 

Continue reading "We Need Puzzles Bakery and Cafe in Schenectady " »


National Autism Association Grants for Assistive Technology and Spelling!

NAA voice

THIS IS FANTASTIC! Thank you NAA, always fighting for families. XOX

Click National Autism Association Give A Voice Program

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The intent of NAA’s Give A Voice program is to provide the opportunity for meaningful, effective communication to individuals with autism who are nonspeaking or unreliably speaking, and whose communication challenges put them at increased risk of injury or harm.

We are thrilled to announce that we are now offering access to certified practitioners in S2C (Spelling 2 Communicate) and RPM (Rapid Prompting Method) while continuing to offer our iPad AAC program.

S2C and RPM involve the process of communication through spelling on a letterboard. To learn more about letterboarding and how it works, we recommend visiting i-asc.org as well as reading the recently-released book “Underestimated: An Autism Miracle” by J.B. and Jamie Handley.

Grants for spellers will provide up to 4 sessions with a practitioner of your choice along with a set of letterboards.

NAA’s Give A Voice Program also can provide qualifying individuals with an assistive communication device including:

A 32GB Apple® iPad® (9.7″ – Wi-Fi only)
AppleCare+ Protection Plan
Avatalker AAC Augmentative and Alternative Communication Software app
Protective Case

To learn more about Avatalker AAC, please visit http://www.avatalkeraac.com.

iPad grant recipients, please use this link for helpful support resources from Apple in both English and Spanish.

We have very limited funding for this program. Every application is carefully reviewed and all information submitted is verified by NAA staff. This program is intended for families who are in dire need of financial assistance and are otherwise unable to attain access to these communication methods.

Give A Voice Applications are now being accepted.  Click here to learn more and apply.





Spring Means Autism Conferences! TACA's Autism Action Month Conference

TACA Conference 2022
TACA's Autism Action Month Conference is an entirely new offering for TACA families. This virtual opportunity will include presentations from experts, followed up with “take action workshops,” to help families implement what they learn. On the TACA Connect platform, families will be able to access resources, download presentation slides, and interact with other families going through the autism journey. Walk away with bite-sized action steps, a plan for your children, and the empowerment to act with confidence.

TACA's Autism Action Month Conference will feature 2 tracks of presentations from an incredible line-up of experts, covering all stages and aspects of the autism journey, including:

Featuring
2 tracks
Challening Behaviors
IEPs and Advocacy
Complex Medical Issues
Therapies
Legal Planning
Research
Life After High School
Communication & AAC

You’ll come away from the conference with new information, strategies, and resources to help maximize your child’s potential and improve their quality of life.  Click HERE to learn much more!


Autism Bites

4B4F060D-8211-46D3-A2E5-C8D93BDC7516Below is a Facebook status from an autism Mom I've known for many years. Her daughter lives in a residential home and her dental health has plummeted. You might have noticed over the years that many adults with special needs are missing teeth. It's easier to let them rot, and then extract them. However, there is no money for dental implants. My own daughter had a tooth extracted during a hospital based routine filling. I wanted to STRANGLE the dentist with unwaxed floss. He was so blase about it. My father was an orthodontist who practiced dentistry early in his 40 year career.  (Those are my baby teeth in the photo.) Teeth are important to me - and gum and tooth health is very important to overall health. Adult issues in autism revolve around basic healthcare and necessities. Poorly paid and poorly trained staff can blow off hygiene and no one is accountable. And even professionals, like the hygienist mentioned below can be disconnected from usable strategies. Until we all start demanding BETTER.

My bite is much worse than my bark.

###

Feeling very emotional.

Spent several hours this morning advocating for appropriate dental care for my 29 y/o daughter. I know that many of my fellow Warrior Mamas will be able to relate. Had multiple conversations with her dentist, nurse and dental hygienist. Two were very professional and helpful and one was not. She (the hygienist) suggested in a judgmental manner that I drive back and forth to my daughter’s home twice a day every day. Not only is that impractical; but, it would take 14 hours of time per week. I already brush XYZ’s teeth when I see her on Saturdays. She needs a professional cleaning due to severe tartar and plaque buildup along the gum line. The hygienist tried to tell me that this is normal! Part of the problem during the pandemic was a supply chain issue with the ketamine that Emily needs for sedation and the availability of her doctor to administer it.  Sadly, there are 50 individuals awaiting this kind of care and the dentist only performs these procedures on Friday afternoons.


The Power of Love Over Exhaustion

Nakita and daughterFamily is everywhere, right autism friends? I was on Instagram when a video reel caught my eye. A gorgeous woman helping her beloved daughter out of the house, into a shiny Mercedes and then to a chic boutique where they met up with Dad.  As a full time single parent/caregiver to my 3 daughters, who need similar assistance with tasks of daily... everything, the video brought tears to my eyes and I had to learn more.  Have you EVER heard of a Burnout Prevention Specialist? No, but man, you sure need one, right? Meet Nakita Nelson. I think we all need to get to know her - and how we can support each other when respite isn't a luxury, but a necessity to function.  Do you have any sort of respite? I am fortunate that my daughters have respite budgets, and I have a great team of helpers.  Overnights are tougher, to coordinate so many schedules. But I have managed to travel and get a break. It's DEElicious. I suppose my ex-husband is a respite provider, as the girls visit him at his girlfriend's house in New York every 3-4 weeks for a Saturday, Sunday night stay. It's better than a sharp stick in the eye, as my own Dad used to say.

I hope you can see the video below the jump so you can enjoy a few minutes of music and the uplifting prayer of love, acceptance and sacrifice.  I don't know if the lengthy embed code from Insta will work here - so here is a link to the video as well. You can find Nakita on Insta @NakitaNelson_

Continue reading "The Power of Love Over Exhaustion" »


Supplies & Support for Ukraine Families with Medically Fragile Children

A1A5711D-EDFB-49E8-8CF0-53D1137029F2I wanted to update readers on your generosity at work. Here’s a photo of some of the supplies we've sent to Dr. Theresa Cianciolo in Vermont for Ukrainian orphans and families with special needs children. Thank you! The Amazon wish list seems to work well, if you ignore the constant emails for other folks' joining and departure activity.  You can visit Theresa's website here. ScottandTheresa4UK

1) Click Amazon Ukraine List
2)Sign into the list
3) Add items to cart
4) Check out
5) Ship to SCOTT CIANCIOLO'S GIFT REGISTRY Irasburg VT
6) Pay


Here is an update from Theresa: We need your help. We are making a team to help individuals first of all get to a safe border, help to fill out visas (this is extremely important as we have many children who are medically fragile and have special needs). We need those individuals who have time to one on one get with a parent (most of the time Mom’s as Dads are fighting) and build a relationship, pray with them assist them with paperwork. What a wonderful opportunity to build those relationships. We continue to collect resources and I have so many to be thankful for some I have never met 🙂 future plans are for Scott and I to go out to Poland and Romania within the next 5 weeks (where we are supporting ministries taking children with special needs and their families) bringing those supplies and resources right to them. We also have items that we can get through the border of Poland directly to our ministry leaders who use their gifts to get them to military hospitals and for their communities as their currently are not pharmacies that are stocked. 

Email me at [email protected]. Thank you. Kim


Ready Set Learn Forever

Ready set learnOne of my daughters finds great comfort and joy in the TV shows she watched as a toddler and youngster. Every so often, she finds a way to tell me that she wants to find a certain program on YouTube. Yesterday, she was singing a song in her inimitable fashion. It took me a several listens to know what she was singing. From 1992 - 2008, The Learning Channel had early morning children's programming that they called "Ready, Set, Learn." The bumper  between shows when my daughter watched was an adorable cartoon about a penguin named Paz and his Mom. Shows included Skinnamarink TV, Jay Jay the Jet Plane (before CGI!) Hip Hop Harry, High 5, Peep and the Big Wide World (before PBS) and Pappyland. Pappyland was a local programming show from Syracuse, that found its way to the big leagues on TLC. Yesterday, my daughter was singing the Pappyland theme song. I found episodes on YouTube, and I only wish I could show you her JOY as she heard the theme song begin.  She sang at the top of her lungs, and stimmed, and smiled her beautiful smile. 

We all crave certain comforts, nostalgia is soothing. Is this what drives my daughter?  Is this when he neurological status fully changed - into autism - and she is stuck there? I don't know. I know that she is very happy. And I will be listening to this song for quite some time. I until I unravel the next mystery for her.

I'm sure some folks would tell me to extinguish this juvenile behavior and bring her forward. I will, just as soon as the Brady Bunch episode is over....XOX


Amazon Wish List for Ukrainian Children with Special Needs & Autism

THERESA UKRAINE CHILDNOTE:  Basic supplements & medical supplies needed urgently in Ukraine for children with autism and special needs. 

Here is an invitation to join the WISH LIST and the items will ship directly to Dr. Theresa and her husband Scott Cianciolo in Vermont.  I vouch for her - every tablet, gummy, item will go to Ukraine. 

1) Click Amazon Ukraine List
2)Sign into the list
3) Add items to cart
4) Check out
5) Ship to SCOTT CIANCIOLO'S GIFT REGISTRY Irasburg VT
6) Pay

  If you have issues, let me know at [email protected]. Thank you.


AMAZON UKRAINE LIST

Good morning. My dear friend Dr. Theresa Cianciolo (in photo) moved her family to Kyiv last year, to devote herself full time to helping the children of Ukraine - orphans with special needs and children with autism.  She and her husband Scott, a Pastor, adopted orphaned twin toddlers with  Down Syndrome & autism themselves.  They had moved to Kyiv last year and returned to the safety of Vermont a few weeks ago, as the danger escalated.

Theresa is going to Poland within the month, to bring much needed supplements, supplies and medications.  We're using an Amazon Wish List - that Theresa's team has compiled. Items ship to Vermont.  I realize not everyone is a fan of Amazon, but for expediency, this is our method of ordering.  Thanks.

This is something we can DO - so much more than being a keyboard cowboy or cowgirl.  For a few bucks - we can help a child get a good night's sleep, daily vitamins.


ABA Yay or Nay

Fire extinguisherSafeminds has featured a story from The Autism Society on the topic of Applied Behavior Analysis. ABA is controversial in many ways. Some families call it a godsend, others a nightmare. What has your experience been with ABA? For my family, I can say that since getting out of the school system where data collection was the  holy grail and rote, dead end tasks were considered learning goals, my daughters have THRIVED. I sought out a non-ABA based program for my youngest daughter's transition program. There's a team member who used to be at Bella's high school.  She did not recognize the happy, smiling, social young woman she knew from the frustrated young woman who had not 1 but 2 paras following her around data clicking 3 years ago.  ABA did not extinguished a single behavior in my daughters. Not one. They outgrew them with organic social instruction, and maturation.  Behaviors were communication phases. Behaviors were self-soothing coping skills - that I had no desire to trample. I had a private hire PhD behaviorist sit in many of my IEP meetings telling the high school team that ABA should be phased OUT through the school years because - and this is 100% true - the "real" world is not prompt based. Prompt dependent adults with autism have to unlearn and relearn how to manage skills that they have - but that are not readily accessible without prompting. Share your thoughts. Be kind. Be respectful. Be truthful.

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Autism Society to Issue a Position Paper on the Topic

Applied Behavioral Analysis (ABA) has long been considered the “gold standard” of autism treatment. It is typically the first therapy recommended following a childhood diagnosis of autism. This is due to the large body of research to support its efficacy. Since 2019, all 50 states require insurance plans to cover autism therapy, specifically including ABA coverage. Many parents and ABA therapists view the therapy as a vehicle for reducing challenging behaviors, which could ultimately improve the quality of life for ABA participants. However, the therapy has increasingly faced growing opposition from people who participated in an ABA program during childhood. Consequently, while many view ABA as a godsend, others view it as an unethical and harmful therapy meant to normalize people with autism by hiding their identity and personality in order to conform to a neurotypical standard. Advocates for ABA feel that some of this current controversy stems from outdated practices such as the use of restraints or withholding food, which are no longer used and are now considered unethical. These advocates point out that newer ABA methods focus more on promoting a child’s self-direction and choice. The division over the way to view ABA is coming to a head this month as the Autism Society hosts three virtual town hall meetings to discuss the matter in preparation for a position paper on the treatment, which will be released later this year. The Autism Society’s town halls are designed for people in the autism community to share their experiences with ABA in a thoughtful and respectful way. But, in the meantime, the debate on ABA is likely to continue.  READ MORE AT SAFEMINDS


Life With Autism In Pictures But Banned on Facebook

Brandon 2022 1Note: Our friend Michelle Guppy has shared her journey with Brandon for many years. She has a raw, honest blog called Life With Autism In Pictures. Yesterday, she tried to post one of her blog entries on her Facebook page, and Facebook would not let her.  We're running an excerpt today, and hope you will click over to her blog to finish reading, and bookmark the site.  The crackdown on showcasing the often grim side of life for and with our loved ones with autism is depressing as heck. I couldn't even Tweet Tanner Welsh's obituary from AofA because Twitter now marks ALL of our Tweets as "sensitive."  I even Tweeted a Bundt cake - a sensitive Bundt cake.  But we all keep going - including Michelle and her family.

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Life With Autism In Pictures Silent Surrender

In many ways, the last few months have been a series of Lemony Snicket's "A Series of Unfortunate Events"..... as well as the usual series of "unrecoverable's" as Todd so fondly calls the insanity of certain incidents we could never imagine in our "Life with Autism, Seizures, & a side of PANDAS"...

I have to chuckle at my ignorance...silly me...I thought the rules of life were that if you already have one lifelong challenge, you were somehow magically exempt from all other hardships that can happen in life. To say that I've felt suckerpunched is to say that "autism" is simply a "quirky behavior." Not many will get that, but those who do, deeply get it.

As I have desperately tried to navigate this unfamiliar and unwanted bump in the road so to speak - I am deeply grateful for the NDCQ motto that I have embraced thanks to being introduced to the Navy SEAL world of FORGED warriors and their NEVER QUIT mentality - not to mention the Survival, Evasion, Resistance, & Escape (SERE) training of Matt's Navy journey that began ten years ago...

"The Only Easy Day Was Yesterday" has been proven to be true in my life in so many ways..... except I might add, for warrior families like mine, there seem to be no easy days.........

(I mean really, don't we warrior moms wish upon wishes that our "Hell Week" lasted only a week?)

Which brings me to this picture I captured a few days ago while driving my son to his Adult Day Program...  Read more here.