Note: Katie Semro is an AofA reader and she's has a project we'd like to share with you.

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I'm Katie Semro, and for the last 13 weeks I’ve been making the podcast Transmission Times  using audio diaries from people around the world. I'm planning on creating a special episode featuring parents and soon-to-be-parents talking about their experiences of the pandemic. Would you be willing to add your voice to the project? 

All you need to do is record your answers to the questions below on a smartphone and email them to me, or call 847-354-4163 and leave a voicemail.  Deadline is July 10! 

• Describe your best moment with your kids?
• What was your worst moment?
• What happened that you didn’t expect?
• What do you want to remember from this time?

The details:

When you record please include the date and where you live, including your name is optional. Apps like Voice Memos for iPhone and ARS - or similar - for android work well. Then email the recording to me at ksemro@gmail.com — this can usually be done right from the app. Or call 847-354-4163 and leave your answers as a voicemail. 

The recordings can be as long or short as you want. Typically people record for 2 -5 minutes. Don’t worry about mistakes I will edit these out, just speak from the heart. 

I hope to collect a lot of responases and will fit as many as I can into the podcast. All of the replies will be saved in the Transmission Times Archive to document this time for future generations. 

Thank you so much for participating in the project! 

If you have any questions, technical or otherwise, please let me know! 

Independent Audio Producer
Transmission Times: Audio Diaries During COVID-19
This Paleo Life

Below is an excerpt from a blog called Thinking Autism Guide.  Please note: the article might not use the same type of person centered language that you or I use.  That said, I have a loved one with autism who just yesterday shattered the last of our cereal bowls on the granite countertop.  During a ride in our minivan, I was worried she would break the window with her pounding palm. At dinner, the noise of her banging her hand on the table frightened her sisters (also with autism) away from the meal. I found the information useful. 

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When Autistic Kids Destroy Things

Source, Barbara's FB 10/19

Note:  I met Barbara Fischkin at my very first public speaking event in New York City a dozen or so years ago.  She is an accomplished author,  and was a successful journalist who traveled the world for her career. I consider her a friend and mentor. Her adult son Daniel has been in his New York Group home since the quarantine began.  Like many group homes, Dan's been denied all visits, even from Mom or Dad. Her son contracted COVID and recovered. She has been able to have curb distance visits. This is happening all over the country, maybe the world. People with autism cut off from their loved ones. I can't imagine anyone being able to explain to my three daughters why I am not there for them. My once, twice, thrice broken heart couldn't take knowing they were worried I'd never return, or worse starting to forget me.

Below is an excerpt from a magnificent narrative non-fiction essay she has written about this time and our autism family.  Never forget, no matter how we ended up here, how we have treated autism, educated our children, housed them - all of it - at the end of the day, we are the autism family.  Take the time to savor her style, her wit, her honesty, her emotion. Enjoy.  Kim

Barbara Fischkin is the author of three books of narrative nonfiction and satiric fiction and is currently writing an autism-related historical novel titled The Digger Resistance, some of it set in what was once an Eastern European shtetl. She holds an interdisciplinary Master of Liberal Studies Degree in “Autism Past and Present,” is a writer for City University of New York’s Office of Communications and Marketing, and is a member of the CUNY Disability Scholars Group. As an international journalist, Fischkin covered stories in Latin America, Asia, and Europe and wrote for major publications including Newsday, where she was on staff, the New Yorker, and the New York Times, among many others.
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AUTISM in the Time of COVID: Guilt, Histories, and the Village

Kim

By Barbara Fischkin

GUILT

The Covid test for my son came back positive. Great, I told myself, first you gave him autism, now the plague. Dan, 32, has been unable to speak since he was three and a half, a rare case of Childhood Disintegrative Disorder. Doctors told my husband and me to expect the worst. This, they said, was as severe as it gets on the autism spectrum. The worst did not happen. As an adult, Dan has an active life. Still, he is far from cured. Due to his lack of speech and other disability-related deficits, he cannot live by himself or go anywhere alone. He lived with us until he was 22 and then moved to a nearby group home. It is a beautiful, well-furnished house and he has his own large room. Still, it is a group home. I do not know what happened to our once normal child; nobody does. As the spectrum itself grows, it becomes more confounding. For me, maternal guilt comes with the territory and it is irrational. I am still haunted by the long-debunked theory that “refrigerator mothers” cause autism. In my case this is beyond ridiculous. Friends, relatives, and colleagues—and my husband in particular—claim I have an overabundance of warmth, enthusiasm, and passion and, if anything, could tone it down a bit. Still, on bad days the dark side of my brain imagines Bruno Bettelheim, the most famous purveyor of the “refrigerator mother” autism myth, rising from his cremated ashes to crown me the world’s foremost ice queen.

I think: I should have worked less after he was born? Should I not have moved him from one country to another when he was just a toddler? I was a journalist and a writer. But I took him with me. On interviews in Mexico City, to Guatemala to interview orphans, to Panama, Thailand, and the Philippines to catch up to his foreign correspondent father. He rode in a baby backpack and played with my hair. I took him—and a nanny he loved—to a North Carolina writing workshop, because two weeks was too long a separation. Doesn’t this exemplify a warm mother?

I should have played more games with him. Did we have enough puzzles? Too many? I read to him every night, didn’t I? Goodnight Moon. The Very Hungry Caterpillar. The Philharmonic Gets Dressed. You name it, I read it. 

I breast fed Dan. Or am I imagining this?

Could a mother imagine she did such a thing, when she did not? I do not think so. But when it is almost 30 years since your child fell apart and you still don’t know why, such thoughts continue to flow. And so, it came as no surprise to me—or others—that when Dan tested positive for the novel Coronavirus, I was sure I had given this to him, too. I based this on circumstantial evidence which would be mortifying, if it weren’t so funny. In the worst of times, and in our memories of them, humans crave humor. If we didn’t, the Holocaust movie Life is Beautiful would not have won three Academy Awards. 

So here goes: I was sure I gave Dan the virus because I had my eyelashes dyed. 

The woman who does this for me—as she tells great stories about waxing the legs of Lillian Hellman and Beverly Sills—tested positive after my last appointment with her on March 4. New York was still wide open then. She was so sick that she wondered if she was down for the count. I didn’t find out until she revived and after I had spent a day with my son. If I had known, I would not have seen him. This anti-mantra flowed through my brain, until I convinced myself I could push it aside by a list of other ways Dan could have been infected. Three of his group home housemates had it. Did they give it to him? Or he to them? Staff came in and out. My husband and I rode the Long Island Rail Road in early March. We walked and biked the crowded boardwalk in Long Beach on Long Island, where we live. This is the nobody knows virus. Dr. Peter Piot, the director of the London School of Hygiene and Tropical Medicine described in the New York Times on May 26 as a “legend in the battle against Ebola and Aids,” does not know where he got Covid-19.

Dan appears to be healthy now. He has been symptom-free for weeks. He has, ahead of time, lost the 20 pounds he usually sheds in summer when he surfs the ocean. He looks like himself again, tall and solid, fashionably balding with a Roman profile. There do not seem to be any Covid after-effects, as many others—including Piot—report. But. . . can a mother tell such a thing from a distance of six feet? As I finish writing this on June 1, I have not been able to touch my son or even stand in the same indoor room with him since March 17. Seventy-six days. After 49 days, my husband and I were permitted curbside visits with him. It is as if our son were a restaurant permitted to offer take-out, but not delivery. Neither one of us has ever not seen him for this long, even in those vintage traveling days.

Hi, friends. Kim here. Yesterday, I received an email that my youngest daughter's school will be closing its doors for good on June 30th, after 28 years serving students with autism and other severe diagnoses. She was only there for one year, her first transition year post 18.  But they treated Bella like family from day one. She had two more years to go. She has made so much progress there.  For the first time in her 19 years, she is communicating with us. Telling us what she thinks and needs and wants - via assistive tech. The other day, she "said," "I don't want to..."  Can you imagine a life of never being able to express yourself?  She had a dream team of teachers and therapists.  Imagine if Michael Jordan, Tom Brady, Wayne Gretsky, Arnold Palmer and Alex Rodriguez came together with their talent and expertise and heart. And success rate. That was Bella's school.

Poof.

Teachers. Fired.

Therapists. Fired.

Staff. Fired.

Students. Fired.

COVID-19 will be killing more than people. It will kill dreams. But it will NOT kill our future.

I told my daughter's teacher, who had the honor and decency to call me right away, with tragedy comes opportunity.  We will create something new. Bright. Good. Whole. Sustainable. Somehow.

I can't write much else about this. I'm reeling. Truly.

COVID-19 just deep sixed one of the best schools for autism the nation has ever had.

STILL I RISE - By Maya Angelou

Thanks to Cathy Jameson for creating this art and updating me that it's Giving Tuesday! This is a day to support organizations making a difference in your life and the lives of others. If you would like to donate to AofA, you can send a check or use our DONATE link on our sidebar (or in our menu on mobile devices.) We use merchant services through Bank of America for a secure transaction.  When you use this, I do NOT see your address - only your email address.  If you send me your snail mail address, I'll send you a thank you letter with a bottle of hand sanitizer - signed as a bit of humor.  I'll wear gloves and I promise not to lick the envelope!   If you donated recently - thank you. I'm 1000 years behind on sending my thank you letters, but I will.  Thanks! Stay well. Kim

Autism Age
PO Box 110546
Trumbull CT 06611

Note: Thanks to Joanie Calem for introducing me to her writing, so that I can introduce you, our readers. This post below is the perfect piece to run now that April and Autism Awareness Month is over.  Although Covid overshadowed the month of blue, for sure. Joanie writes reality. Below you'll read how her son was put on probation at an art school - because of his autistic traits and coping mechanisms.  Thank you to the neurodiversity movement and the mainstream media's deep desire to pretend autism is simply like hair or eye color.  It's not. 

Joanie is a folk musician with lots of music to share along with her insights as an autism parent. I know you'll enjoy her work.

Visit JoanieCalem.com

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A person’s right to fully participate in all aspects of society….

Shepherding children to adulthood is a bit of a whirlwind. The school years are often one long race from morning ‘til night. But as any parent of both a neurotypical child and a child with autism can testify, there is great variance in the nature of whirlwinds… both my husband and I realized early on that our parenting style changes dramatically depending on which offspring we are with at any given moment.

Just a mundane example: Looking back at the 13 years that our neurotypical daughter, who is now 26, was in school, we dutifully appeared for the standard parent-teacher conferences and events where her teachers heaped praise on her. In contrast, during the 16 years that our son, who has autism and is now 24, was in school, we were there for IEP meetings multiple times per year for ongoing consultations with teachers and administrators multiple times per year, disciplinary meetings, emergency meetings, negotiations about behavior plans, and then of course those same parent-teacher meetings and events. Vive la différence! I was a virtual stranger to my daughter’s educators; I was a regular installation for my son’s.

I began my teaching career before I had children. I loved learning about the theory of multiple intelligences and different learning styles and used this information regularly as a music teacher. This background in education and child development certainly helped in parenting as well. As a disability advocate now, I often run into parents who honestly don’t know that their children’s development is different than what it should b, because they are not in a field that requires that knowledge. Having a background in education helped me identify early on that our son was wired differently, and that all those big books about the stages of child development did not actually apply. I knew we were in foreign territory, and I knew that I didn’t know what to do.

Will you be our Valentine? Shop at smile.amazon.com and AmazonSmile donates to Age of Autism at no cost to you! And think  how HAPPY Jeff Bezos will be to send us a donation? LOL!  KIM

Amazon not your style? We are donor supported and you can send a check to:

Autism Age
PO Box 110546
Trumbull CT 06611

Or use the donor button link to secure donating through Merchant Services and Bank of America.

Thanks!

Note: The media, social and anti-social is so full of anger, vitriol, friendship lost over politics,, over bodily autonomy that this story made my day. I'm 100% New Englander. A Yankee (from Red Sox Nation.) A NAWTHerner....   I was hoping Amanda Cartagine of Pizza Inn would give the culprit a good old fashioned Southern "bless his heart....."  :)  Sometimes it does take uno villagio. Thanks to her for her generous spirit. You can visit her website here!

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By Jocelyn Neo, The Epoch Times

A customer complained to the owner of a Pizza Inn in South Carolina about an employee with autism in the fall of 2018 and asked her to hang a sign to caution the patrons. Respecting good business ethics, the owner heeded the suggestion of the customer but did so in a way to emphasize a different point—and she did it in a style worth appreciating. The sign read:

“We are proud to be an equal opportunity employer and hire all of God’s children.”

Amanda Cartagine owns the Pizza Inn on Woodruff Road in Greenville. The restaurant seems like any other fast food outlet, but there’s one notable thing that makes the place one of a kind—out of the crew of 16 employees, 10 have special needs.

“These are like my kids, and it made me angry,” Cartagine told WYFF. “I wanted to do something that was not rude, but got my point across.”  READ MORE HERE.

By Kim Rossi

When I was a child, I used to visit my auntie and uncle in Florida (pronounced FLAH-ridder in Massachusetts, my home state) during winter break. They had an electric log fireplace that crackled as a rotating something or other made of foil slowly turned to mimic fire. It mesmerized me. As I was looking for an interesting Yule Log for today's Christmas post, I found this 1 minute look at the same fireplace.

It got me to thinking that many of us celebrate an electric yule log holiday because of autism. It's not really a log that burns and sends forth heat. Not at all. In Florida, it was considered a magical version of a real fireplace, a fireplace they could not have. Ah.

I hope you and your family have an electric yule log Christmas. Not the imagined perfection of a Currier and Ives card. Not the reality that families whose kids grow up typical and move past Sesame Street and Thomas to college and careers and giving you grandchildren. That is not to be for me. Maybe not for you. But.... my 3 beautiful daughters are happy and smiling. They love the holiday because I make it special for them, exactly they way they need it to be special. A plastic ukulele that lights up when you strum it under the tree.  Beads that make a delicious sound when they shake and feel like comfort in a 19 year old's hands.  A fresh pink sweatshirt. These are the things my girls want. And so that it was SantaKim brought.

Merry Christmas. God bless us. Every one.

Love, Kim and all of us at Age of Autism.

December is an important month for non-profits like Autism Age. We're tiny. Elfin even. And we rely on donor support. Many of you have donated during the year. And a few of you make monthly donations that warm my heart. As censorship rolls across social media, we're more important than ever. In my humble opinion.  I feel a deep obligation to Dan's memory to keep AofA alive and well.  I'm grateful to all of our readers, commenters and donors. THANK YOU.

There are several ways to support us:

1) Amazon Smile: Shop and we earn a percent!  Won't Jeff Bezos be thrilled?  When you shop December deals at AmazonSmile donates to Age of Autism! Remember, you have to log into SMILE.AMAZON.com to get into the donor version of the site.

2) Bank of America merchant services donation. Safe. Secure. You can use our donor button on the right sidebar or at this link if you're on a device.

3) Network for Good

4) Send a good old fashioned check!

Autism Age
PO Box 110546
Trumbull, CT 06611

When you shop Cyber Monday deals at smile.amazon.com/ch/47-1831987, AmazonSmile donates to Age of Autism at no cost to you!   Perhaps buy a book about censorship?  Won't Jeff Bezos be THRILLED to help support our work? LOL!  Happy shopping! 

REMEMBER: You MUST go to the SMILE.AMAZON site to register us as your charity, so please use link above.  And you can change charities too. Donate to us for one order, and choose one of our friends for the next order.

Thank you! Kim

By Richard Everts

So, yes, for many of us, with some luck we’re going to get really old, our kids that require almost 24/7 caretaking will be ok, and we’ll outlive them by a day or two. Or, maybe not. Either way, we’re going to need help, and we have a partial solution we’re building for ourselves that many of you, my readers, might be interested to know more about. Jump to the end if you want to find out how to connect directly. You may know my wife and I from our 2014 Oscar qualified film The United States of Autism, which has now played in over 75 countries, and many thousands every year still stream it around the world. We donated a large portion of every local screening proceeds from the showings, we battled congressman and senators in Q&A’s, and we donated copies to many libraries around America, all on almost no budget. But despite all that impact, we came to understand in our own personal life, if we want our son to live the most comfortable life by aging in place, how are we going to accomplish this as we become older and may need help ourselves? So, we sat down and listed out all the things we would need help with as we age.

The Real Problems We Face

Know where he is day or night (help with wandering). Check. Daily living reminders (executive function) for getting dressed, toiletries, medicine, eating, sleeping. Check. Complete privacy so no one at Amazon, Facebook, Comcast, Google, or anywhere else can hack in and see what goes on in my home. Check. Then, it got really complex. Preparing food. Cleaning the house. Talking to him when he’s upset or he injured himself and we’re not around. Adjusting water temperatures and faucets, making sure the ovens don’t burn down the house, even closing the refrigerator. All these things are something Rosie from the Jetsons would do. Which gave us an idea. We at Sugey decided to start building a Home Artificial Intelligence called The Sugey One, and do this ourselves if the market wouldn't listen.

How it Works (and Help You Sleep Better)

The camera systems are placed at the exits of your house first, maybe one in the individuals's bedroom as well and anywhere else you'd like to track (kitchen, playroom), and are able to recognize people during day or pitch black night and track them around the home. The Sugey One camera sensors also have voice activation and speakers! These allow us to notify someone if a person wanders out of the home who is not supposed to, either by text or by telling the person in the house via speakers . It will also track simple behaviors like eating and sleeping intially. So, in summary, you’ll have a few private cameras placed around the home that will help you mitigate wandering (maybe help you sleep better), and help keep track of daily living tasks and store information for any future records (like times people wake up so you can tell if people may be sick or depressed). You have to start small when building artificial intelligence hardware. Large companies spend millions of dollars, and we, well, we don’t. However, we’ve made tremendous progress (blowing the pants off of the big companies I might add) focusing on these two areas, wandering and daily living. We find these are the top two concerns and we focus heavily on it in the present, while planning ahead for all the potential unique things people will need in the future. Lastly, the collected data is managed privately, and we have a unique hardware setup to make sure all the camera images are private as well.

The Gotcha

The biggest gotcha is that when we pitch investors on what we’re doing, often they come back to us with two problems.

1. The market is too small
2. You don’t have the backing

That’s right, shockingly I know, people telling us there’s no money for autism support.

Note: Every so often, we get a glimpse into the real lives of families facing the challenges of raising a child on the spectrum. Too often, we get a whitewashed, Hollywood version of autism, whether The Good Doctor or the 1 in a million young lady who becomes a lawyer. For many, probably most of our AofA readers, life is difficult. In my memoir, I wrote that I would never have a life that was like a big wedding cake, with a hundred plates of cake. I have a petit fours life. One tiny bite on one small plate. Maybe three small plates. And that bite is delicious. I savor it. While I want the whole cake, for my girls most of all, it's not reality for us. And so I find joy and delight where I can.  Read this blog entry below. The silver lining for her is scar tissue.  Think about that. Her daughter suffers from autism and severe mental illness. Her story is not unique. Many families have sought residential or inpatient treatments for their severely aggressive children, only to find nothing. We know the story of Alex Spourdalakis too well.  His mother spent weeks in an ER with her son tied to a bed. And then she murdered him.  This is life for many in The Age of Autism.  Robyn, if you read this. We are glad you are safe and hope that your Ariana finds relief from her agony.

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Traumas of severe autism and psychosis haunt a mother as she repairs her broken home and heart.

By Robyn Fedrigon

We live in a beautiful home, in a beautiful neighborhood. I am almost done repairing destruction caused by severe autism and psychosis. It’s been five months since she’s been away. I’ve painted just about every room in our home.  I’ve spackled holes in the wall—the size of feet and fists. I remember the tears, as I painted over the last muddy handprint she left above the bathtub. And hanging new blinds from ones that were broken from her trying to, and eloping out of windows. Door frames needing total replacements from the repeated slamming while she was manic.

Revenge is a dish best served with free 2 day shipping! LOL! Let's let Mr. Bezos help keep us going!

You can make a difference while you shop Amazon Prime Day deals on July 15 & 16. Simply shop at smile.amazon.com/ch/47-1831987 and AmazonSmile donates to Age of Autism - How about a nice Ferrari! LOL! THANK YOU. KIM Exec Director, chief, cook, bottle washer.

Hello, friends. a dozen years ago, Dan Olmsted and Mark Blaxill had an idea for a site to expose the Age of Autism as the epidemic it had become. Kim Rossi (then Stagliano) joined their team and Age of Autism, "the nation's first daily web newspaper of the autism epidemic" was born. In 2019, we're a site focused on autism, yes, but also on the much broader topic of HEALTH CHOICE.

We need your financial support. Gone are the days when organizations were able to sponsor and support us.   We are now fully donor driven. 
 
Your donation is tax deductible. I've signed on to Network for Good as a safe, easy to use donation platform.  Every dollar counts!   Or you can send a check to Autism Age, PO Box 110546 Trumbull CT 06611. And don't forget matching gifts! Especially is you work for a pharma company. Ha Ha! THANK YOU.

Donate through Network For Good Here

Many mainstream platforms have censored articles that discuss health and vaccination choice, refusal, even safety. We've seen articles replaced by "404 Error" messages. Age of Autism is more important and valuable than ever. We stand almost alone. And we need your support to keep the rebel alliance, as our dear friend Dan called us, going strong.

Yesterday, we ran a post from Laura Hayes about the fact that Huffington Post deleted all content that was about vaccination safety, including many of my own posts.  I'll be writing about that soon. Laura wrote:

I just read your letter to Huffington Post readers regarding your decision to “remove dozens of blogs that perpetuate the unfounded opinion that vaccines pose a health risk to the public.”

I am wondering if you happened to even read the link you posted as evidence of vaccine safety? If you did, you seemingly missed the CDC’s own admission, albeit woefully inadequate, that vaccines come with myriad risks and do indeed cause harm, and fail, and have since their inception. Read her full letter here.

Health Freedom advocate Larry Cook pulled down all of his contributions on Vimeo (the video hosting site) because they removed vaccination safety and choice related videos.  I could not limk a Vimeo from Kevin Barry earlier this week - the link wouldn’t connect.

We've worked too hard - all of us including you, our readers, to see our work "Marie Kondo'd" because it does not spark joy for pharma. I have a plan underway for a new platform to tell HuffPo and Medium to become ShoveItPo and MediumSmallMinded. Stay tuned. And please, donate a few bucks to keep the rebel alliance going!  Thank you. KIM

Hello, dear readers! Kim here.  I'm hitting  you up for a donation, so get ready. XOX

After a quiet weekend with my girls, I find myself at the computer on Sunday afternoon selecting content for you to read on Monday morning. AofA is a content hog - and I must feed the beast daily. So feed I do. With help from our wonderful Contributing Editors.  Our content reflects the state of the autism epidemic. Right now, we are measles heavy as vaccine mandate laws slash across the nation. Soon, we'll seem "political" as the Presidential election gets underway. We NEVER please everyone. Thank GOD. The day we make everyone happy is the day I log off and hit DELETE SITE. Our job is to tackle the uncomfortable. The difficult. It has cost us sponsor after sponsor. 

I am a Sirius satellite radio lover and I listen to a range of channels all day. I rarely watch TV. I cut cable when I moved in October to a new little house. I miss not a thing about TV news. I can listen to the major news channels on Sirius and I have the CBS app if I need to watch the NYC news during a storm, etc. But I digress, as usual!

As I bumped Miss Mia off my laptop, I was listening to the Siriusly Sinatra channel and the song playing was "Everything Happens to Me." I'd written about this song once before here at AofA. Why? Because of this lyric:

"I've had the measles. I've had the mumps. Everything happens to me."

Measles and mumps were  comm0n childhood diseases for decades in America. They did not induce panic, fear or discrimination. They were not used to fund politicians and pharma and public health  machines. They were a pain in the ass nuisance that pediatricians saw daily, and parents handled with relative ease. Measles and mumps were fodder for cartoons and sitcoms and pop songs.

Today, we face a real hit to our liberty, rights as Americans. Those of us with "under-vaccinated" children are being demonized. Our kids are being called threats to society. Imagine that. Healthy American children banned from school and elsewhere.  We face not only discrimination, but also censorship. We're being bumped from social media (our account was removed from Pinterest) and there's a push to shut us up.  Not likely. We speak out for OUR CHILDREN and the children even of those who claim to hate us.  Censorship?

NOT AT AGE OF AUTISM.

Our work, Dan Olmsted and Mark Blaxill's original mission, is more important then EVER.  We are donor driven. Your donations fund my ability to run AofA every day. With your funds, I pay to keep us online, I pay myself a small salary (less than I made 35 years ago out of college) and when funds allow, I try to help other autism Moms who also write. 

Please make a donation to us today. You can use the Bank of America merchant services donate button on our sidebar, or our new funding platform at Network for Good - which is also funding our NEW family member: www.AutismAges.org. More on the new site later this week.

If you prefer to send a check:

Autism Age
PO Box 110546
Trumbull CT 06611

Thank you. KIM

5 TVs all Tuned to Same Elmo's World Video in the home of a young man with autism

Dear Person Who Thinks Autism Is What You See on TV. THIS. WE MATTER. Our growing children matter. As I type, Mia is watching an Elmo's Art Workship CD-ROM converted to YouTube on her Kindle. She is 24. It is our sacred duty to stick our necks out every day to try to prevent this from a happening to another generation. We aren't going away.  No joke.

Love,

Kim

Note: Thank you to our Dan Burns for sharing this beautiful blog entry from Autism and Other Things by Robert Hughes Walker and his wife Ellen with us.  I often use music to soothe my girls, especially my oldest daughter. When she is struggling, I start to sing "Sing," or "We're a Family," from Sesame Street.  Hospitals can be anything but hospitable to people with autism. The bright lights, untrained staff, strange smells can be overwhelming. Please enjoy this lovely bit of salve in a world that is far too rough overall.  

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Please view the blog to see the photos. Worth the click.

By Walker's Mom, Ellen

As a dedicated Law & Order viewer, I’m very familiar with the good cop-bad cop bit detective teams use to wrangle the truth from a perp. But now, in real life, I have witnessed the amazing miracle a team of big-hearted police officers can work on a guy in serious trouble by using a good cop-good cop routine.

Hit with a severe paradoxical reaction to a med meant to calm him, Walker, our 33-yr-old gentle son with autism, suddenly was raging through the house, shouting, striking out. We called his psychiatrist and quickly headed off to a hospital for help. (Driving in the pouring rain in rush hour traffic with Walker beside himself, shouting and fighting, but I digress.)

The moment we entered Loyola Medical Center Emergency Room’s first sliding door, Walker grabbed me and bit my hand. Hard. Blood, a scream. And lots of police officers all at once.

Like all autism parents, especially those with jumpy, nonverbal, 6’3” guys like our son Walker, my husband Robert and I can easily imagine how things often go very wrong very quickly when the police get involved.

And here they were suddenly, a bunch of them with bullet-proof vests, badges, taser guns in holsters. About 5 grabbed Walker, held him, while another one took me to a nurse. We were reunited at Walker’s ER cubicle, with Walker now surrounded by 7 large officers, led by Sergeant Keith Miller.

Robert and I, sitting nearby, were overwhelmed with fear, sadness, you name it. Walker was contained. He needed help – blood tests, an EKG, calming meds – but was too wild and upset to accept it.

Then, things changed. When Walker jumped up from the examining table to escape, the policemen instantly turned it into a game.

“Walker gets up!” they cheered.
They helped him sit back down.
“Walker sits down.”
And he did.
“Walker scoots back.”
He did.
“Walker lies down.”
Yes!

“High Fives All Around.”
And, amazingly, Walker smiled and High Fived every one of them.

Immediately, he tried to escape again.

No way. We are not going to accept the same treatment of our children, many  now fully grown adults, with autism going forward. It's not Groundhog day for us any longer. Housing? We demand it. Jobs? Yes, with dignity and honor. Healthcare? Fully respecting their unique needs and very real basic human rights.

In a few days, look for the launch of Autism Ages - a new online community where YOU ask the questions, provide the answers and together, we forge a safe and meaningful and inclusive life for adults ANYWHERE on the spectrum, from the preverbal man or woman who needs 24/7 support to the Aspergerian who wants to hold down a job commensurate with his or her intelligence and ability.

I'm setting up the site by myself - and it's a job and a half let me tell you. Expect a shell version to start - BETA if you will - and let's help it take off.   I will email everyone who has already contacted me ASAP - to join the list, send me an email at AutismAges@gmail.com.

Thanks! KIM

Hello, friends! Remember magazines? The Timbertoes? Goofus and Gallant? Glamour "Don'ts?" How about that two staple centerfold?

Amazon Smile is offering a HUGE promotion for magazine subscriptions to benefit non-profits, like Age of Autism now through January 31.

I'd rather read a magazine in my own home rather than ANY doctor's office. Please designate Age of Autism as your Amazon Smile beneficiary today. Thank you!  Oh, and be sure to read the terms and conditions copy below very, very fast.  KIM

Terms and Conditions
For a limited time, the AmazonSmile Foundation will donate 15.0% of the purchase price from your eligible AmazonSmile new print magazine subscription purchases.
• Your eligible purchases must be made through smile.amazon.com on desktop or mobile browser between 12:00 am (PT) on 1/16/2019 and 11:59 p.m. (PT) 1/31/2019. You can learn more about the AmazonSmile program at smile.amazon.com/about. AmazonSmile is not currently available through the Amazon app.

I'm not even sure how to respond to this article.  I'm encouraged and heartened and horrified all at the same time. Substitute autism for dementia and I wonder how our loved ones would be received? This staff was comprised of adults with dementia who had had excellent careers and proven intelligence. The same can not be said for people with autism like my three daughters. Passersby often assume they are fully intellectually disabled. They are not. They assume they can not understand what they hear. They can.  My girls at 24, 22 and 18 have never had a career. Would the public be as patient. I fear not. Read the full article and share your thoughts. Could we do this with autism -staff a typical business for a day, week, month and see the response here in hurry up impatient America?  KIM

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Would YOU eat at a restaurant where all the staff have dementia? Our Mail on Sunday reporter tried it out...

Tapping my pin number into the terminal to pay for lunch, I notice my waitress Sue hovering. Quick as a flash, she says: ‘I’ll turn away but you don’t have to worry. I won’t remember the number anyway.’

Moments earlier, she had carefully entered the cost of my meal, totalling £23, into the machine, and bravely confessed she had forgotten how to add up – a devastating admission for a 62-year-old former sales rep who was once used to working with numbers.

Welcome to The Restaurant That Makes Mistakes, staffed entirely by dementia sufferers. The pop-up venue – a former Bristol fire station – was open for five weeks in December under the watchful eye of award-winning chef Josh Eggleton.  Read more here.

This is why we have a "dreams" category! Below is a story from California that made me grin from ear to ear. How many of us were told to institutionalize our children when they were diagnosed as toddlers? I'm guessing a lot. Warrior Autism Moms (and Dads) never give up and below is a story of how one Mom shunned the dire future described for her son, who just passed the California Bar Exam on his first attempt.   Is this story "commonplace?" Not by a long shot. So many of us are exhausted and damn near broke from trying to recover, cure, call it what you will - IMPROVE our kids' lot in life by removing the barriers set in place due to autism.  I would say most of us haven't caught the brass ring. But I sure celebrate ANY family who has the kind of success in this story. Even better? Erik wants to work in special education law. What on earth could be more formidable than an attorney who has sat in a SPED classroom himself? And he's already making a difference in group home conditions. Congratulations to this young man. We look forward to watching his career. And to his Mom... we're happy for you.

###

From  NBC San Diego, California.

When I found out, I really did pass my keyboard got wet with tears of joy,” Erik said. 

The road to becoming a lawyer wasn’t an easy one. Erik was diagnosed with autism at the age of 3. When he was 5, doctors told his parents his autism was so severe, he’d have to be institutionalized the rest of his life.

Sandi Weber, Erik’s mother, refused to put her son in a home.

“You have to grieve the loss of the perfect child. What you thought you were going to have, is not going to be the same,” she said.

When Erik was first diagnosed there wasn’t a lot of information about autism, so Sandi had to improvise. She started videotaping her son’s behavior and playing it back for him as a teaching tool because Erik responded better to visual learning.

To help Erik understand facial recognition, she and Erik campaigned door to door for Councilwoman Marti Emerald. Sandi said having Erik see people’s reaction to cold visits helped him understand first impressions.

“Suddenly with his non-verbal face and big eyes, he realized I got him,” she said.

She also enrolled Erik in Special Olympics. The organization gave him confidence, friends and strength as he attended college at Point Loma Nazarene University and got into the Cal Western School of Law.

Now Erik plans to practice special education law.

“I got into it because I wanted to help other people with special needs, other people like me,” said Erik.

He’s already written a paper about group homes that house special needs people.

“Two thirds of them in Southern California are below standards on how they treat the residents in group homes," he said. "The oversight is not there.”

His paper has been shown to two assembly members and one state senator. He’s hoping his paper will encourage a change in the system.   Read more and view video here.

via GIPHY

Happy 2019 from all of us at Age of Autism!

We're entering our 12th year of reporting "embedded" in the autism world. Many of our kids will be aging out into adult services this year, or soon thereafter. The special needs programming world was built decades ago for people with myriad physical and intellectual disabilities, (IDs, the term has replaced mental retardation.)  But not for people with autism.

Soon, we are launching a second Autism Age platform called AutismAges.org.   Autism Age is the name of our non profit. Age of Autism is our blog, Autism Ages will become our social community.  We're building it on a bulletin/topic board platform that's designed to let users on any device log in, review and create topics.  Autism Ages will be YOUR meeting place to ask questions, share information and learn as we all go - about life from the teen years forward.  

This will NOT replace Age of Autism - we'll remain dedicated to Dan Olmsted's mission. 

I want to extend a special invitation to young adults and adults with autism themselves to join us. We have Miss Jennifer Rose, author, college student, woman with autism, helping to build this safe space to ask questions and share knowledge relevant to growing up and into adulthood on the spectrum.

Autism Ages will be about where we are going, not how we got here. Capisci? I invite you to send us an email at AutismAges@gmail.com. We'll send you info on how to join this groundbreaking new family. La nostra famiglia. 

XOX

Kim

Note: Vacations can be rarer than a Santa sighting for most of us. When we finally gather the money and courage to go away, the result can be more stress than we have at home, where we've been able to "autism proof" our lives for the most part. When I took my girls to DisneyWorld many years ago, we lost Mia on a 2200 acre resort as she slipped out of attached hotel room door while I unpacked. An autsim GRANMOM found her pushing the buttons and counting the floors in the glass elevators. Below is an article about a Miami-based company that offers the equivalent of "AutismBnB." What a fantastic idea. Homes that are already autism-friendly for a vacation. Our dear friend Wendy Fournier, President 0f the National Autism Association is quoted.

From the Orlando Sentinel:

By Gabriel Russon

Vacation rental company caters to kids with autism

Little Julie and Jason Lanza were delighted to show off their souvenirs collected from a day at the theme park.

But the truth is, vacations are sometimes difficult for their mother, Lissette Lanza.

Jason — a sweet-faced boy of 7 with floppy bowl-cut hair and an affinity for cars — has autism.

Going somewhere far from home takes him away from the comfort of his routine. He likes a plan, knowing what’s happening next. No surprises.

“Sometimes he handles it better than others,” said Lanza, a special-education teacher. “Sometimes he has a meltdown.”

But on this trip to Central Florida, Lanza expressed a sense of relief. She stayed at a vacation rental that caters to families with autism and other disabilities.

“You don’t find a lot of places that completely understand what you do when you have a child with autism,” Lanza said. “This has been a welcomed gift since you don’t have to explain anything.”

Earlier this year, Miami-based VillaKey launched an online platform that showcases homes that are more comfortable to people with autism. Many of the homes feature intentionally soothing neutral colors and allow service dogs. (myvillakey.com/autism-friendly).

“We really offer the peace of mind,” said Alice Horn, president of VillaKey, which advertises about 200 homes in Orlando.

Horn grew up with a father who had Asperger’s syndrome, a mild form of autism, and remembers how hard it was for the family to stay in hotels because noise bothered him.

Lanza appreciated that everything was washed with fragrance-free products, which wouldn’t bother Jason’s severe allergies. There was also an alarm on every door so if she looked away for a second, Jason couldn’t get distracted and sneak out. A checklist from VillaKey helped Lanza prepare her son for a day at the amusement park.

More businesses are striving to be inclusive to families dealing with autism — which affects one in every 59 people, said Wendy Fournier, president of the National Autism Association.  Read more here.

Merry Christmas, friends.  We hope today is a day of kindness, care and maybe even a bit of rest. We deserve it.

Note: I am part of many FB special needs groups. Yesterday, I read a post that felt so raw, so real, so "this is my life too," that I asked the Mom if I could share her story here. The holidays are extra hard for many of us. It hurts like hell to buy another preschool age toy for your teen or adult child. I bought a Nick Jr. Team Umizoomi T shirt for Miss G. Special made from an ebayer because the retail T shirts are TODDLER SIZED ONLY.  I know it will thrill G, but it hurt me not be buying her a gas card from Shell instead. That said, there is always joy at the  holidays. We find it. We create it. Feel free to share your stories in our comments - or email them to me at AutismAges@gmail.com. 

To the author of this post, we love you. We love your daughter. We understand.

XOX  Kim


To the parent who beeped at me this morning in the drop off line.

Did you know it took me an 25 mins just to convince my child that today was going to be a fun day at school. It’s pajama day and day of movies and fun before break?

Did you know she cried all the way to school trying to feel comfortable in her new soft pjs and her socks are never just right and her sneakers are always to loose or too tight and she struggles with feeling comfortable every single day all day long and school won’t recognize it her spd because she holds inside all day while at school?

Did you know when we got to the drop off line we drove around three times because i was trying to let her calm down and hoping that administration would notice that we were driving around so they would send help and so we wouldn’t hold up the drop the off line????

Did you know that we were sitting and she was crying because wearing her jacket over a long sleeve shirt felt like her arm was squeezing off and she couldn’t get it to a bearable feeling?

Did you know that when you beeped we were there for less then a minute???

So if you’ve ever felt inpatient in the drop off line because you really need to be somewhere remember you don’t know what’s going on in the car in front of you. I would have parked but it was raining and i really wanted school to notice! I’m sorry we held up your day by a minute!

I wish i had the courage to post this on my regular page. I don’t want anyone to judge us she already goes through enough and barely has any friends as it is. I just needed to vent about it in a safe place to people who would understand or maybe to anyone feeling the same way i am who also feels alone in your daily battles with your kiddos!! Today was an especially tough day and today i feel defeated.

Hi, friends. I thought we could use a feel good story that is more than lip service to those of us who have children with special needs. I'm in a Facebook group for families with children with any sort of disability or diagnosis, from young to adult. We support each other, share ideas, kvetch about the vagaries of life, etc. This week, a Mom posted a great message that I will paraphrase here. The Cheesecake Factory is at the Westfield Mall in Trumbull, CT. The manager is Jamie.

The Cheesecake Factory does not take reservations. This Mom wanted to have her young adult son's birthday party there, at HIS request. When she explained to the manager that a group of about 10 special needs guests would be attending the party, and that they might have a difficult time waiting in the infamous Cheesecake Factory line, the manager instantly made an exception and booked a table for the group.

This seems like such an insignificant gesture. So what? They reserved a table. Bah humbug! You and I know this is a big deal. Each moment of kindness that helps us to help our kids feels like Christmas Day.  

Happy Holidays.  God bless us, every...one. Kim

My oldest daughter is about to turn 24. My baby is 18. My head is spinning with questions about how they will live. Where they live. With whom will they live. Social security assists them - but would never support them here in Connecticut.  I'm not thinking about when I die - there's too  much to do right now to build a life for them. A safe, fun, meaningful life they can enjoy.

It's time for a new conversation. The experts are few and far between. This autism epidemic is bursting into adulthood and systems are not in place. We'll have to build them.  You know that. I know that.

What are your most pressing concerns for your child today? In 1 year. 5 years. I can't think much past 5 years right now.  We need to talk about this. It doesn't matter how you think your child became autistic.  The fact is, all of our kids will need support, whether going to college and then employment or a day program and every stage in between.

Let's start.   Kim

This month, all tax-deductible donations go toward a generous anonymous patron's $5,000 matching gift. Read more after the jump below. You can use our DONATE button online through Bank of America Merchant Services - safe and secure. Or send a check to Autism Age, PO Box 110546, Trumbull, CT 06611.  Thank you. Kim

November is here,

Giving thanks is due.

I’m donating to AoA,

How about you?

Hello, friends. We have a generous patron who is matching gifts up to $5,000 this month.  Every penny goes to keeping Age of Autism live and online with fresh content and comments 365 days a year.  Donations are tax deductible. You can use our DONATE button online through Bank of America Merchant Services - safe and secure.  And because we are a non-profit, they only charge a tiny fee, unlike other services. Or send a check to:

Autism Age
PO Box 110546
Trumbull, CT 06611

Our EIN is 47-1831987

If you've been reading us for years - thanks your for loyalty! Newcomers? Welcome.  Donate what you can - every $5 will soon turn into $5,000!  Age of Autism is more important than ever as social media cracks down on topics they find too controversial. You know what I'm saying....   We need your help!

And stay tuned for a new and necessary addition to the Autism Age non-profit family in 2019. It's time to expand our mission. That's all I'll hint for now. 

From all of us at AofA and Mia, Gianna, Bella and most of all me, their Mom, thank you.

And now, a note from our fabulous matching gift patron!

###

Please take a few minutes to consider the following:

• How often you read AoA
• How often you share articles from AoA
• How AoA has helped you, your child, and your family
• How supported you feel when you read AoA
• How encouraged you feel when you read AoA
• How you appreciate the content of AoA
• How you appreciate that AoA is a daily blog
• How you appreciate that AoA includes news that mainstream media refuses to cover
• How AoA has amazing contributors, both in the form of writers and commenters
• How there are those behind the scenes who keep AoA up and running on a daily basis, who need and appreciate our financial support

Now that you have contemplated those points, I hope you are feeling inspired to make a donation to keep Age of Autism running strong for another year.

I will match all donations made from Nov. 1st through Nov. 30th, up to $5,000. Last year, we exceeded the matching amount…let’s do it again!

Simply click AgeofAutism.com/donate.html to pay online. Or, if you prefer, you can mail a check made out to “Autism Age” to:

Autism Age

P.O. Box 110546

Trumbull, CT  06611

Please don’t put this off. Click on the donation link, or grab your checkbook, an envelope, and a stamp, and make your donation now. Let’s show Kim and her helpers our support today!

Sincerely,

Anonymous Donor

A few years ago, I had the great pleasure of speaking to a group of parents at the wonderful, spectacular, scrumpdillyicious Puzzles Bakery in Schenectady, New York.  We've often said here at Age of Autism that the SIBLINGS will change the world long after we parents are too old, too tired and just too too to toot any longer.  We need Puzzles around the nation - they have a fantastic model, the menu is brilliant, the service high tech and the mission, to hire those with developmental disabilities including autism and Asperger's is sweeter than shoefly pie. Visit the Puzzles Bakery and Café here.  Kim

SCHENECTADY — A three-person crew from NBC's "Today" show filmed in the back room Thursday as the lunch crowd started to make its way into Puzzles Bakery & Café in downtown Schenectady.

Owner and founder Sara Mae Pratt, 28, said the bakery's mission is to provide meaningful job opportunities to people with developmental disabilities.

"They've been shadowing all our employees throughout the day, they've been here since we opened and they're just capturing what it looks like to do what we do," she said.

A sign on the door warned patrons, "Be aware that you may appear in the background of their footage."

The crew was expected to continue filming all day.

Pratt said Puzzles was featured on National Public Radio and a nightly television newscast when it opened in 2015 at the corner of State and Barrett streets.

She is happy to have the spotlight again and recounted the call a few months back from producers of the network morning show.

"We're still here and I guess we're still newsworthy and happy that we can provide some happy stories for people in the news," Pratt said.

More than half of Puzzles' roughly 16 full- and part-time workers have developmental and intellectual disabilities, Pratt said, making it an integrated workforce.

"I just think that it's really important for all the employers out there across the country and all over the world to really consider taking a chance on people with special needs," she said. "I think they will be pleasantly surprised."

The bakery's name is taken from the puzzle piece, which is the international symbol for autism awareness.  Read the whole article here.

By Terri Schuldt

Dear Age of Autism Readers:

I am a parent of an 18 year old non-verbal girl with Autism.  My daughter endured over 8 years of “scientifically validated” Verbal Behavior ABA therapy prior to starting with the Rapid Prompting Method (RPM).  We pursued this line of intervention for 5 years with some success prior to delving into Facilitated Communication (FC) which has given us full open communication and academic success and a wide wide world of understanding and exchanges with my daughter.  My daughter was also the lucky recipient of 8 years of Occupational Therapy by outside and school therapists and a lifetime of home programs provided by yours truly mom who is a graduate of the Medical University of South Carolina Occupational Therapy Program.  All of these interventions have moved us forward, but FC has given us life changing strides.

I am writing in response to the article published by Age of Autism on 10/15/18 titled The Facilitator’s Touch.  Mr. Dalziel writes a number of things that are troubling and slanted.  The first red flag of the article is that Mr. Dalziel describes his first experience with FC as the “trained graduate student” stating “Tell me about this book”.  It only takes 1 basic training in FC to know that you do not start with open communication such as this, right out of the gate.  Mr. Dalziel then goes on to state “he did not want to do it”.  Hmmm, ok, problem number 2 identified…She then showed him a picture book and asked him to describe it.  Again, a bit of an open topic for a newbie typer.  There is a process of teaching FC and the following of Best Practice methods that should be held when learning this method.  There are other factors such as the intangibles that some would call trust or rapport.  Ask ANY parent out there if they have ever had the experience of their child (any child with or without a disability) not wanting to participate in something with a stranger.  Now imagine that stranger touching that person and holding their arm and then demanding a response.  I know this scenario very well because working as a Pediatric Occupational Therapist I would never grab a child and demand an outcome.  You have to build rapport and trust first.  I often would demonstrate my techniques on the parent first and then have them practice the home program with me allowing the child to observe these interactions. If I was lucky at the next visit the child would willingly accompany me to the clinic for treatment and participate more fully.

Is FC a perfect method?  I would say “no”.  There is a chance that if you have an over zealous facilitator with bad intentions that influence could happen.  However, I must ask how anyone can deny the success that some FC users have had as they progressed over time from requiring assistance to reaching 100% independent typing.  I have personally witnessed this in my own community over a period of one year.

Note: Thank you to Bruce for this raw post, written from experience as only a parent can write. We are all facilitators for our children with autism.  In some fashion. This post delves deep into the use of Facilitated Communication.   KIM

By Bruce Dalziel

My dear wife Mary still has dreams in which suddenly Matthew speaks.  She dreams she is somewhere ahead of him-- perhaps driving a car with him in the back seat, or with her back turned towards his at a family party-- when he speaks a complete sentence, with perfect diction, such as “I always prefer that we drive this way as opposed to the highway.”  In the dream, Mary asks, “Who said that?” and Matt says “I did,” or someone says “Matt did;” Mary is the only one in this dream who did not know Matt could talk.

This dream has precedents in our lives-- when Matt was 2 ½ he said “no” quite clearly to his grandmother, and that same month he said the word “bubble” perfectly at a birthday party.   Today at 30, Matt has a good heart, a strong mind, and a wide vocabulary, and he is able to type to communicate basic needs, but he has not actually spoken again since. 

When Matthew was diagnosed at age three, in 1990, autism was only beginning to be understood as a developmental disability. Its incidence has increased fifty-fold since.  Doctors could tell us Matt was autistic, but not why.  We found ourselves unlikely pioneers on an unexpected frontier.  No one could tell us what caused it.  Autism is defined in terms of symptomatic behaviors, including impaired communication and social skills, with no single identified cause, despite lots of theories.  Yet the mystery gave us some hope that the secret of the tomb could be discovered, and that Matt’s disability somehow could be cured.  Like cancer patients chasing clinical trials, for Mary and me at that time, it was that or die trying.

Before Matt was diagnosed, like most Americans, we knew little more about autism than what we learned from Dustin Hoffman’s portrayal of the precocious character Raymond in Rain Man, which premiered just after Matt was born.  That is to say, we viewed autism as a curiosity, like Outsider Art.   The Who’s rock opera Tommy presented a darker view: Tommy falls into a catatonic autistic-like state because of extreme childhood trauma linked to his mother, reflecting outdated 1950’s psychological theory suggesting autism is caused by “refrigerator mothers”, who are somehow unable to love their children. 

In our house, this was always a laughable premise. Mary is all love all the time, especially for her dear boy and his younger sister Suzanne.  Indeed, Mary literally taught Matt to love. It was like a D-Day assault, or maybe the Macarthur plan is a better metaphor. I am not sure I can describe it more precisely than as a singularly intimate focus or as a supernatural force.   We had both read a memoir called “The Siege” by Clara Claiborne Park, a mother of a child with autism, who took an aggressive behavioral approach to breaking through to her child.  Like Joan of Arc, Mary took up the sword. 

Matt’s view of the world was distorted and enormously frustrating.  Mary stood right in front of him, offering her full presence at every moment, and absorbing his pain.  She nursed him for sixteen months, which was his only consolation at the time, since he did not suck his thumb and he had no use for toys or stuffed animals that might comfort other children.  They developed a deep connection. 

Today is Prime Day! Beginning at 3pm Eastern,  Amazon donates to Age of Autism when you shop Prime Day deals at smile.amazon.com/ch/47-1831987.   Thank you and HAPPY SHOPPING!  May we suggest a Ferrari, a 10 carat diamond ring and a closet full of Jimmy Choo shoes? LOL!   Thanks - KIM.

Note: Many of us are starting to think about where and how our children will live as adults, as we grow older, and after we die. Group homes are one option. But are they in any way appropriate for adults who may have moderate to severe behaviors, and/or who are not "compliant?" The world of special needs is not as it was 25+ years ago when most consumers had down syndrome or an intellectual disability or cerebral palsy, spina bifida and other diagnoses. Autism is the new kid on the block - and no one knows quite what to do with or for our kids. When consumers are not compliant, staff can become angry and belligerent and retaliate. It's a frightening prospect. Adults with autism may be excluded from any funding by virtue of IQ and yet, be unable to live independently. What of them? If the goverment tasked with taking on the autism epidemic via IACC is any indication of actual progress for us? We're in for a world of hurt, and so are our kids.

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Feds Urge Steps To Make Group Homes Safer

Five months after a scathing report found that injuries, serious medical conditions and even deaths of those with developmental disabilities living in group homes often go overlooked, federal officials are responding.

In a four-page informational bulletin issued this week, the Centers for Medicare and Medicaid Services’ Center for Medicaid & CHIP Services said that it “takes the health and welfare of individuals receiving Medicaid-funded Home and Community-Based Services (HCBS) very seriously.”

The agency described its new bulletin as the first in a series of guidance documents it plans to issue in response to a January joint report from the U.S. Department of Health and Human Services Office of Inspector General, Administration on Community Living and Office for Civil Rights.

The findings were based on an audit of emergency room visits from group home residents in a handful of states, but investigators said that media reports from across the country suggested the problems were widespread.

Ultimately, the report recommended that states adopt model practices for better oversight and that the Centers for Medicare and Medicaid Services establish a “SWAT” team to address problems. practices, the bulletin noted....

By Chuck Hancock

Five years ago on Father's Day, my mother died. Mary Hancock had broken her arm several weeks before her death, and her health just started to go downhill.  The medical professionals had trouble managing her pain.  I think she just decided enough was enough.  I suspect she thought to herself, “I had  a great life, I believe in God, and I know I will be in a much better place.”  Her last week alive was spent under hospice care.  The care was great, and it took place in the little one bedroom apartment in the facility where she had lived for the previous several years.  I stayed there with her 24/7 for that last week.  Sleeping on the couch in the living room, wondering when I woke up and went into her bedroom if she would be alive.  

During her final week, my son Charlie was able to visit her a few times.  My how she loved him.  I recall exactly where and when I was when I told my Mom by telephone that Charlie was going to be a boy.  Before Charlie was born, in 2005, my Mom had four wonderful grandDAUGHTERS, but no grandSONS.  She no doubt loved them like crazy, and, they all were, and are, amazing kids.  All now, actually, amazing women each with multiple children of their own. I asked my Mom that day, "So, what do you want, a boy or a girl?"  Never too afraid to speak her mind, she exclaimed "I WANT A BOY"!  I told her, "You got it"!  And I cried like the baby that was to arrive within the year.  

During the last several days of my Mom's life she was not able to speak.  She was failing.  Time was running short.  The hospice workers kept telling me "I think this will be her last day."  This went on several days in a row.  Two days before Father's Day, in her room, holding her hand and talking to her, I asked her "Please wait (to die) until Father's Day."  I know this might sound very odd to many.  But I had my reason.  Maybe a bit selfish, perhaps not.  

I knew when I was 10 years old that I wanted to be a father one day.  Sounds a bit crazy, I know.  I just recall experiences like being at the community pool in the summer, and really enjoying entertaining the younger kids.  I also played plenty with kids my own age as well.  My son Charlie has an autism spectrum disorder.  Two days ago he completed the 6th grade.  I guess you could say that he is "high functioning."  Though, I am not a fan of labels.  No two kids with autism are alike.  Most of his autism-related struggles concern comprehension of information, social skills, and the ability to "understand" what is happening around him.  He at times struggles.  And as a parent, when a child struggles, WE struggle.  

By Dara Berger

Time flies. Gianna, in her fashion, is leaving the nest (not literally, she lives with her sisters and me!) and starting the adult phase of her life. School ends today. She turns 22 next month. Can you imagine that?  She will be attending a program for adults with special needs. She'll be safe and well cared for and have a chance to grow and learn and gain skills toward more independence. And while it sure isn't what I had ever planned for her - I'm grateful that we have good people helping us. Mia's age out was much tougher on me.  But I'm in a better frame of mind than I was two years ago, so perhaps that's a big part of my peace. I hope you are find peace too.  In some fashion. We can do this, friends. Readers. Stay strong.

Love, Kim

By Barbara Fischkin

After the curtain call, we approached the actors and begged them to autograph our Playbills. Some were gracious. One was overly enthusiastic. Another wanted to go home. Or maybe it just seemed that way because he did not look us in the eye. Mostly, their signatures were shaky. They had to concentrate when they signed, as if this was a harder thing to do than sing, act and move to the score of “Guys and Dolls.”

As they all just had.

Yes, the actors were all disabled and, as is probably obvious to readers of Age of Autism, some were on the spectrum. In real life they are teenaged students at a Special Education New York City Public School in Harlem. A “District 75,” program, as such entities are called – all too often with a cautionary tone.

As for the show – it was great. It was alternately touching, joyous and funny at all the right moments. A spectacular “Adelaide,” sang that just from wondering whether the wedding is on or off, “a poiyson,” could develop a cold. I am told that offstage this student says “person” not “poiyson,” and she picked up this Adelaide-ism from studying the movie. When she said to her actor boyfriend of 14 years, the inveterate gambler "Nathan Detroit": “Nathan, you are a liar,” and he shrugged with emphasis, the audience broke up.  As it did when the shortest actor in the cast jumped up and announced, with great confidence, “I’m Big Jule. Let’s shoot crap.”  “Sarah Brown,” hugged “Sky Masterson,” quickly, as tentative as any Salvation Army “doll.”  As for Sky, I would have gone with him to Cuba for lunch in a flash, as well as on a boat to heaven with the student who played “Nicely, Nicely Johnson.”

After a prolonged standing ovation, one mother of a cast member said, joyously: “I didn’t know who it was up there.”

 Our children surprise us. My own younger son, Jack, who spent his earlier years more interested in ice hockey than anything else – is now 27 and a teacher at this school. He was one of the assistant directors. (This is the same son who teased me mercilessly when I told him that “acting in theatrical productions” had been my own favorite high school “sport.”) As a New York City Teaching Fellow, Jack earned a master’s degree in special education. I worried about his choice of this field. His older brother, Dan, now 30, has severe nonverbal autism and I felt that Jack had perhaps already done enough special education for a lifetime.

“Mom, I like this kind of teaching,” Jack told me. Clearly, he does.

 It was notable for me that most of the actors had memorized their lines. Without labeling, let’s just say that in the cast there were those who might not be expected to accomplish much.  One actor had to be wheeled on and off stage, another had trouble finding the curtain to exit.  Nevertheless, the show went on.

 Two decades earlier our own disabled son, Dan, was denied participation in a school show in a school for disabled children because “it might hurt his feelings since he can’t talk.” Balderdash. The students at this District 75 school who were nonverbal or minimally so were living it up as guys and  dolls in the chorus and on the boat to heaven. Sometimes, as an audience member, my eyes wandered to them as I watched them steal the show on their own terms.

What I saw on this recent evening was a school with dedicated staff who “presume competence” and appreciate the “dignity of risk,” watchwords of the disability and advocacy communities.

I would like to end with a bouquet of thanks to all those who made this performance - officially titled “Guys and Dolls, Jr.” -possible with funding and other supports: The Schubert Foundation, Music Theater International, the New York City Department of Education Office of Arts and Special Projects, ArtsConnection, I Theatrics, - and the staff, teachers and community of the wonderful school where my son teaches. For more on how a show like this happens, please see FundforPublicSchools/Shubert

Author Barbara Fischkin is writing an autism-related historical novel and is a Communication Manager and Writer for CUNY's Queensborough Community College.

Join us in congratulating our dear friend, autism Grandmother extraordinaire Maurine Meleck on the publication of her poetry book.

We have a copy for two lucky readers. But we'd love you to buy a copy!  $16 includes shipping. Please use Maurine's Paypal me address: paypal.me/MaurineMeleck. 

Author’s Note

This is not a book about politics.

I promised myself I would not salt

these pages with tasteless verbiage

about an autism epidemic,

stirred for two decades

without politicians or the media

lifting the pot’s cover.

Note: We're happy to share this invitation to attend Actionplay's SurrealityTV. Law professor Mary Holland is on the board and her son has participated for many years. If you're in the NYC area, check this out!

###

Dear Friends!

There are two exciting Actionplay events coming up that we couldn't be more excited about!

Actionplay, an organization who’s mission is equal access to the arts for individuals on the autism spectrum and related conditions, is reviving their hit 2017 production of their original musical comedy “Surreality TV” – devised and performed by individuals on the spectrum. Performances will take place on Saturday May 5th & Sunday May 6th at 7pm, at the Leonard Nimoy Thalia Theater at Symphony Space in NYC. Tickets are available via the Symphony Space Box Office.

After the show on Saturday May 5th from 8:30-10:30 the Actionplay Board of Directors will be hosting an ENCORE! AFTER-PARTY at Symphony Space's Bar Thalia in celebration of the performers in the show. Beer, wine, cocktails and appetizers are included in the after-party ticket price. Help support Actionplay’s dynamic programs, and hang with the Actionplay crew!  You can make a contribution in support of Actionplay’s efforts and purchase tickets here.

Actionplay is Creating a More Inclusive World from ACTIONPLAY on Vimeo.

Note: Thanks to Michelle Guppy for allowing us to excerpt from her blog From Hell to Hopeism. Her son Brandon is a gorgeous young man with autism who is wracked with seizures. Michelle and her family fight a fight few of us can imagine. I have 3 kids with autism and would struggle to carry Michele's burden. Yes, burden. One of our roles at AofA is to show all sides of autism and to expose the agonizing underbelly of this diagnosis. Few write with the heart and guts that Michelle brings to her blog.  Bookmark From Hell to Hopeism.

By Michelle Guppy

It is bittersweet seeing all the #saidnomother images.

Let alone the 7,000 names written in blood, sweat, and tears on the VAXXED bus that symbolize lives lost or forever altered by adverse vaccine reactions.

And then to add insult to injury upon injury, we have April.  National Autism Awareness Month.  Which for those of us who have seen the truth happen before our very eyes, should rather be named, "National Vaccine Injury Denial Month" where the book "Denial" by Dan Olmsted and Mark Blaxill is required reading.

I guess with the epidemic numbers of those affected by 'autism' growing exponentially every reporting year - those who even came up with such a month for society to be made aware of such a disorder - had to quickly back-peddle where instead of seeking to understand why - we now have an entire month to "light up" and "celebrate" the "new normal" that is here to stay.

Which is why most like me go into hiding this month.

It's hard to decide which is more unbearable -- living this "Life with Autism, Seizures, and a side of PANDAS" caused by vaccine injury -- or enduring a month that "lights up" and "celebrates" the chronic, painful, life-altering-for-all-involved disorder as if it were no big thing.

Read the full post here.

Our son James who is 18, has significant impairment from his vaccine induced autism. He fights a dysfunctional body everyday and I wish everyday that it didn't have to be so hard. But RPM the teaching method that gave James communication has changed his life. Hopefully any AoA reader has already heard about it but its good to be reminded and this essay will inform some of you about what the journey from silence to communication has been. He wrote it for his community college english class. The class was supposed to explore how they get and process information. A different question for someone with autism! Brooke Potthast

By James Potthast

English 112-003N

James Potthast

January 19, 2018

Information Literacy Narrative

“Attaining the Information of the World”

            My current environment stimulates and allows me to continue growing in my information literacy. I have a multitude of resources for receiving and sharing information. I am a college student, I listen to audiobooks and podcasts, I write a quarterly newsletter, I have a personal blog, and I often listen intently to those around me. I consider myself to be information literate. I am able to listen and process information presented to me in a variety of formats. I pride myself in the speed at which I can auditorily process information. However, all of this did not happen overnight. My journey from prisoner to college student is one of struggle in finding ways to access, use, and understand information.  

            Almost five years ago, I had very limited access to information, no ability to use the information I possessed, and was not being taught to understand what I heard daily. I have Autism and I am nonverbal. For this reason, I was denied access to information that I was presumed not to know or be able to understand. My learning consisted mostly of matching and repeating patterns. Then, one day my parents took me to meet and work with Soma Mukhopadhyay, and Autism and education specialist. I remember being taught a lesson about planes. I felt empowered by the fact someone felt I could understand a middle school lesson. I was asked questions to show my comprehension. Using a stencil board with the alphabet on it, I answered each question correctly. Everyone was surprised I could spell, and even more shocked I processed all of the information that was given to me. This day changed my life. I was given the opportunity to access information for the first time, and was able to express my understanding of that material. My shackles had finally been removed and using a letter board was the key that would allow me to freely explore the world.

            After this discovery, my parents decided that learning with a homeschool program would be best for me. A few months later, I became a homeschool student. I vividly remember meeting my teacher, Shannon. I thought she was so smart. I asked myself on many occasions if I would be able to work for a whole school day. At times, I needed breaks. The transition from not being able to communicate the thoughts in my mind to having an organized school day full of educational input was overwhelming at times. I would get tired easily, and get frustrated with myself for not being able to point at the letters as easily I wanted to. This process helped me build resilience as a learner. Now I was able to learn at my grade level. I had the opportunity of accessing the meaningful information that I always wanted.

The AmazonSmile triple donation promotion started yesterday! Amazon is tripling the donation amount to 1.5% when customers make their first eligible smile.amazon.com purchase from March 12 - 31. This is a great opportunity to support Age of Autism's through AmazonSmile donations by when you shop at smile.amazon.com.   Just search and select AGE OF AUTISM. Then shop to you drop!  I generated $.78 so far this month. Don't laugh. The thousand mile journey and all that!

Thanks.

Kim

Our community is none too pleased to see reports that the Florida shooter "may have had autism." Our children, from tots to teens to twenties and beyond, are not innately cruel. They may be terribly violent at times  most often to themselves in what we call "self-injurious behavior," or SIB.  Aggression can be fierce and furious and dangerous. I know of "kids" with autism who put their hands through windows, walls, smash furniture, toss rooms, punch family members, bite, pull hair - all of which is a horror for all concerned. But I can't think of many instances of vengeful, targeted violence. Most often, it's a cry for help, the despair of lack of ability to communicate or connect. Behavior in autism is communication. Even the "bad" behavior.

I looked up "reactive attachment disorder," and came across this info from Mayo Clinic. The more benign symptoms look a lot like autism.

Reactive attachment disorder can start in infancy. There's little research on signs and symptoms of reactive attachment disorder beyond early childhood, and it remains uncertain whether it occurs in children older than 5 years.

Signs and symptoms may include:

• Unexplained withdrawal, fear, sadness or irritability
• Sad and listless appearance
• Not seeking comfort or showing no response when comfort is given
• Failure to smile
• Watching others closely but not engaging in social interaction
• Failing to ask for support or assistance
• Failure to reach out when picked up
• No interest in playing peekaboo or other interactive games

The more severe, including cruelty to animals, mentioned in the case of Nikolas Cruz, is nothing like the autism I, and perhaps you, know.

Some research suggests that some children and teenagers with reactive attachment disorder may display callous, unemotional traits that can include behavior problems and cruelty toward people or animals. However, more research is needed to determine if problems in older children and adults are related to experiences of reactive attachment disorder in early childhood.

Reactive attachment disorder

Goodbye 2017. And don't let the door hit you!

We mean, Happy New Year! What are your resolutions?

Dear Friends: Thanks to everyone who donated in our November Matching Gift program. You generously gave $4510 which our donor is matching.  Frankly I'd like to sing his/her name to the world. But the gift is anonymous.

In our little corner of the world, that's a lot of thanks!

When Dan died, I had just taken over the day to day business management of the non-profit called Autism Age. I am Executive Director of this Connecticut based non-profit. I worried about whether or not we could continue as the nations first daily web newspaper of the autism epidemic. Dan's presence was a comfort to me. A rudder that kept us going full steam ahead. He was a friend. A mentor. Our leader. I miss him every single time I hit, "publish."  John Stone has been a steady source of support and guidance in our new iteration. Mark Blaxill and Jen Larson and our sponsors at Generation Rescue and Safeminds are our backbone. I so value their commitment and work. Brooke Potthast, board member and dear friend to Dan in DC has been an angel of support as we've navigated the changes - including that dreadful day our domain went "poof!" for a short time! There were so many loose threads to pull together so fast after Dan's death. I'm sharing this "inside baseball" with you not to generate sympathy, we each have our own share of day to day problems!  I want you to know that we are as committed as ever (and many think we should all be committed) to bringing you a community of information, news and support as our kids grow up. I think our work is more important than ever. We need to tell the old stories of vaccine injury and severe autism. We need to support families whose young children are just starting their journey.

If you can make a small donation, we'll welcome your effort. "Many a little makes a mickle."  Don't forget to send me your company's matching gift forms too.

Simply click AgeofAutism.com/donate.html to pay online. Or, if you prefer, you can mail a check made out to “Autism Age” to:

Autism Age

P.O. Box 110546

Trumbull, CT  06611

Thank you. Happy Holidays.

Kim