Dreams

An Atrium Provides Sunlight. NAA's Atrium Provides Hope.

Autism atriumMany of us have been in the autism world for a very long time. My oldest is almost 27. Plenty of AofA readers have adult children with autism. That said, we have many younger readers who may be early on in their journey to help their child. The National Autism Association is one of the longest standing organizations that provides actionable information to families.  We launched Age of Autism at the 2007 NAA conference in Atlanta. Their "Autism Atrium" is a fantastic resource for webinars and more. The days of meeting up at the DAN! conferences are long over. And Covid has turned us into a Zoom world. This lack of connection has been detrimental for so many reasons. But here, in The Atrium, there is some sunlight. Check it out at the NAA site: 

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NAA is proud to offer our Autism ATRIUM program.  This educational initiative for the autism community will provide a regular schedule of learning opportunities through free online webiNAArs, a digital library of downloadable toolkits, and a series of blog entries by experts in topics affecting individuals with autism and their families.

If you are interested in being a guest webiNAAr presenter, please click here to submit a proposal.  Thank you!

WebiNAAr Recordings
NAA’s WebiNAArs are recorded and archived on our website.
For free access to all recorded webiNAArs, please register here.

Recorded WebiNAArs:

Food Intolerances and the Gut Microbiome
Presented by:  Devin Houston, Ph.D

Autism & Bullying: What you need to know
Presented by:  Kerry Magro, Ph.D

Sensory Smart Strategies for Real-Life Challenges
Presented by:  Lindsey Biel, OTR/L

Navigating Autism for the Military Family
Presented by:  Tara Hood, NP, LLC

Autism and the Criminal Justice System
Presented by:  Carol S. Weinman, Esq.

Dozens more recordings are at the NAA website. Check them out!


Sixteen, School and a Silver Lining

Chuck and charlie 16Note: From time time we get a post written from the heart by a parent. Chuck Hancock has written for us in the past - he's a single Dad who takes great care of his son, who is turning 16.  When he writes about Charlie, he has a lovely sign off - "I am the luckiest." And we are lucky to hear from him on this, his son's 16th birthday.  Happy Birthday, Charlie! Kim

By Chuck Hancock

Seems like it has been more than three years since I submitted a contribution to Age of Autism. Last time was 2018. Before then 2016 and 2011. I read such profound and insightful submissions here, and not for a second do I think what I submit is even, remotely, in the same worldly realm (been watching a lot of Marvel movies recently) of interest and thoughtfulness of the pieces I read. I write mostly about "Dad Stuff."

Charlie, my son, is an autism spectrum kid. My only child. Being on this journey with him for all these years has, to the surprise of no one reading this, been filled with awesome highs and crazy lows. That said, I cannot for a second imagine living without him.

Charlie is 16 today. I think back to the day I turned sixteen and can vividly remember how things were. I had friends, drove a car, went to parties, played sports and had interests in girls. Charlie shares none of these things with me. He wants nothing more than to have friends. He struggles so socially. Breaks my heart. It is easy for me to be mad and angry about this. I battle this frequently. But then I breath, and pray (though likely not enough), and just try to get back to that place. That place we all are. That place where we Chuck and spider charliewould do ANYTHING for our children.

Navigating the education system over many years has been a challenge. Whatever "education" is these days. IEPs, occasional bullying, and just trying to find an environment for Charlie which he enjoys. Unlike many parent friends of mine with typical kids, his Mom and I are not perpetually fretting over his future. Colleges, careers, etc. A small blessing maybe.

Charlie, his Mom, and I all moved from Maryland to Florida last fall. Saw the writing on the proverbial wall. Big step. Divorced, we try our best to co-parent. Which included choosing a school. We picked a school here for Charlie to go to 9th grade. A very small, private school. Billing itself as one for children with "learning differences." Disaster. While he attended in person, not a good fit. While report cards showed A's and B's, I knew Charlie was not really benefiting from being in this school. Even there, sadly, there were some episodes of bullying. New kid at the school, etc. Just so hard to find a good fit when it comes to schools.

Continue reading "Sixteen, School and a Silver Lining" »


Sage Counsel from Chief White Eagle

311C7DCD-174A-495E-86E3-CA474884A94DSpeaking of Facebook... CT Mall Shooting: Facebook Can Shut Down News  I copied this from dear friend Sargent Goodchild of Active Healing this morning.  I so needed to read and remember that WE control our thoughts and our thoughts affect our health. The side effects can be good or  bad. Fear is a liar, vibrate higher.

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Hopi Indian Chief White Eagle commented a few days ago on the current situation:

′′ This moment humanity is experiencing can be seen as a door or a hole. The decision to fall in the hole or walk through the door is up to you. If you consume the news 24 hours a day, with negative energy, constantly nervous, with pessimism, you will fall into this hole.

But if you take the opportunity to look at yourself, to rethink life and death, to take care of yourself and others, then you will walk through the portal.

Take care of your home, take care of your body. Connect with your spiritual home. When you take care of yourself, you take care of everyone at the same time.

Do not underestimate the spiritual dimension of this crisis. Take the perspective of an eagle that sees everything from above with a broader view. There is a social question in this crisis, but also a spiritual question. The two go hand in hand.

Without the social dimension we fall into fanaticism. Without the spiritual dimension, we fall into pessimism and futility.

Are you ready to face this crisis. Grab your toolbox and use all the tools at your disposal.

Learn resistance from the example of Indian and African peoples: we have been and are exterminated. But we never stopped singing, dancing, lighting a fire and rejoicing.

Don't feel guilty for feeling blessed in these troubled times. Being sad or angry doesn't help at all. Resistance is resistance through joy!

You have the right to be strong and positive. And there's no other way to do it than to maintain a beautiful, happy, bright posture.

Has nothing to do with alienation (ignorance of the world). It's a resistance strategy.

When we cross the threshold, we have a new worldview because we faced our fears and difficulties. This is all you can do now:

- Serenity in the storm

- Keep calm, pray everyday

- Make a habit of meeting the sacred everyday.

Show resistance through art, joy, trust and love.

Hopi Indian Chief White Eagle

Inserted July 9th 2021


National Autism Association 2021 Virtual Conference

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If you've been wondering about Letterboard Communication, as chronicled in JB and Jamie Handley's book Understimated: An Autism Miracle,  Spell2Communicate's Elizabeth Voseller, MA will be a featured speaker.

REGISTER HERE!

The 2021 National Autism Conference will consist of 2 concurrent tracks.

You can view the Tracks HERE.

You must register for BOTH TRACKS via Zoom and will receive 2 unique Zoom links, one for each of the tracks. Use your 2 registration links to choose which track/presentation to watch live. Switch between tracks at any time. Your links are passcode protected and cannot be shared, as you can view from only one device at a time.

All presentations on both tracks will be recorded and made available to you soon after the conference, so you will have a chance to view anything you may have missed. Please note that NAA is not responsible for technical issues out of our control, for instance, corrupt video recordings, or internet connection issues. We will do our absolute best to make sure that all of our attendees have access to the conference content in its entirety.

 


United States Capitol Police Honor Those With Autism

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So much of the news today is grim and worrisome. As a nation, we are at each other's throats because of sociopolitical change, Covid, election fall out and more. April is typically loaded with feel good autism stories. Some are maddening, others give us hope for the future.  This United States Capitol Police patch was created for Autism Action Month 2021. Here's the story of how I came in possession of this badge, because (say it with me) all roads lead to autism. I have had helpers for my three daughters over the years. One young woman joined our ragtag army when she was in college. Her older brother has autism, and attends the same day program as my two oldest daughters.  He's tall, handsome and has a smile that could light up the night sky. His sister came to us fully trained, because she had lived with autism all of her life. Fast forward four years, and she achieved her dream job - she was recruited to the United States Capitol Police force!  I watched her swearing in ceremony on Zoom last year. Her first months on the job have been harrowing, as you can imagine. She has seen two colleagues die, more than many police officers will see in a lifetime. But she's tough, dedicated and so ready to move up the ranks of the force. And she will be a strong voice for people with autism who may come into contact with the police.  That's something to salute.



Harris County Texas Sheriff's Department Honors and Helps People With Autism

Brandon Guppy BadgeMichelle Guppy shared this terrific story from the Harris County, Texas Sheriff's Department on Facebook yesterday.  Readers know Michelle from her blog From Hell to Hopeism, where she chronicles life with her adult son Brandon.

A Message from Sheriff Ed Gonzalez

During the month of April, hundreds of our sworn personnel will proudly wear a commemorative blue badge on their uniform that prominently features the autism awareness puzzle piece to bring attention to Autism Spectrum Disorder and to support those living with it.

We are in our communities across Harris County every day, and this is a small way to send a big message: We’re here to serve all residents with compassion and understanding. 

The distinctive light blue badge with the puzzle piece emblem and engraved words “Help Create a Kinder World” reinforces our promise to do all we can to improve our interactions with residents, including those with a developmental disability or those experiencing a mental health or emotional crisis. It serves as a reminder to residents of what we can accomplish together. 

This is the first year of the Blue Badges for Autism Awareness program and the Sheriff’s Office ordered 734 commemorative badges, more than any other law enforcement agency in the nation! 

According to the Center for Disease Control and Prevention, one in 54 children has autism. Just this year, deputies responded to more than 1,370 calls for service with a mental health component. Many of those calls involved a person with autism.

Last fall, we launched a new initiative called Project Guardian to help our deputies minimize stress by alerting them in advance that they’re about to interact with a person on the autism spectrum.

Continue reading "Harris County Texas Sheriff's Department Honors and Helps People With Autism" »


Blanket Dismissal of Assisted Autistic Communication Unwarranted.

UnderestimatedThis video below from about one year ago, based on a study Eye-tracking reveals agency in assisted autistic communication Vikram K Jaswal 1 , Allison Wayne 2 , Hudson Golino 2.

As JB Handley and his son Jamison's book debuts next month, many naysayers will appear, some seeming to gloat over the impossibility of success for our pre/non-low verbal children, whether tots, teens or over 21. If that sounds jaded, I suppose it is. We're rarely allowed to bask in success.  No other lifelong, life threatening diagnosis gets this treatment. I heard a rumor that a major national autism group is lobbying to change April from Autism Awareness month to Autism Acceptance month. Check out the book Underestimated: An Autism Miracle from Skyhorse today.

Abstract

About one-third of autistic people have limited ability to use speech. Some have learned to communicate by pointing to letters of the alphabet. But this method is controversial because it requires the assistance of another person-someone who holds a letterboard in front of users and so could theoretically cue them to point to particular letters. Indeed, some scientists have dismissed the possibility that any nonspeaking autistic person who communicates with assistance could be conveying their own thoughts. In the study reported here, we used head-mounted eye-tracking to investigate communicative agency in a sample of nine nonspeaking autistic letterboard users. We measured the speed and accuracy with which they looked at and pointed to letters as they responded to novel questions. Participants pointed to about one letter per second, rarely made spelling errors, and visually fixated most letters about half a second before pointing to them. Additionally, their response times reflected planning and production processes characteristic of fluent spelling in non-autistic typists. These findings render a cueing account of participants' performance unlikely: The speed, accuracy, timing, and visual fixation patterns suggest that participants pointed to letters they selected themselves, not letters they were directed to by the assistant. The blanket dismissal of assisted autistic communication is therefore unwarranted.

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JB Handley Live Tonight! Underestimated No Longer

JB book event
Tonight! Monday, March 22, 2021 8:00pm Eastern Daylight time If you join the Facebook group of Dr. Teri and and Stu Warner, you can tune into a live interview with our favorite Batman of the autism warrior world, that would be Mr. JB Handley.   JB will share the story of his son Jamison, who has found his "voice" through Spelling2Communicate. 

Drs. Teri & Stu Warner and The Wellness Parenting Revolution


JB and Jamie Handley Underestimated No More

UnderestimatedAfter  more than a decade and half of treatments that failed to bring about the kind of progress Jamison Handley needed, one therapy cracked the code and imparted communication.  Think about how it must feel to be smart as a whip and yet thought of as intellectually disabled, with no way to output what's going on inside your brain. I recently heard the term "walking coma," referring to how people say that when they were in a coma, they could hear and understand everything around them, but were unable to respond. Is it any wonder at all so many of our kids are frustrated into action? Action that experts call "behavior."

Below is a review of JB and his son Jamison Handley's new book: Underestimated.

How a little-known therapy freed one teenager from autism’s prison of silence

March 15, 2021 (LifeSiteNews) — Every once in a while a story comes along that turns everything we know about something on its head. It throws a heap of understandable (but dead-wrong) assumptions and a vast library of science — thousands of psychology and medical papers — on a burn pile, and it reveals to us something utterly astonishing.

Underestimated, the book by J.B. Handley and his son Jamison, to be released by Skyhorse Publishing on March 23, is one such watershed. It is a true story that will eventually change the world of autism; the research, the medicine, the therapies, the day-to-day lives of many families — but especially, hopefully, the lives of millions of autistic children and adults. In doing so, it is not an overstatement to say that this book may just change the world. 

The hero of the story is Jamison (Jamie) — a 17-year-old nonverbal autist who is so severely affected by his disability that he’s been relegated to a “life skills” class where the focus is on teaching him to do his laundry and use a debit card and keeping him from injuring himself. His life is a tragedy to all the world, except for a few.

Jamie’s father, J.B., is one of those few. Jamie is his tragedy, and he is bent on finding his boy inside the head-banging, “stimming” teen who seems absent most of the time, vacantly tearing leaves into small bits in peaceful moments and wildly biting his arm and wailing at times for reasons that no one understands.  Read more at LifeSiteNews.

 

Autism Means 24/7/365 Love....and Exhaustion

BFEB198F-83DF-44D0-9A0F-B1067374904ENote: Michelle Guppy posted this yesterday, on FaceBook, and I asked if I could share it here. The meaning of love changes as we grow up - old. For so many of us who are full time caretakers of our adult children with autism, love means an intense workload and exhaustion. Maybe that's a dirty secret I'm not supposed to share. Keeping my mouth shut has never been my strong suit. Michelle  has a strong partner in her husband. Thank goodness, because her handsome son is a strapping fully grown man with seizures and behaviors. Some of us are single parents.  My daughters' Dad sees them one weekend a month, kind of like ROTC without the push ups. Or as I told Gianna, like her period. (There's the mouth!) No matter the home set up, we are ALL wiped out at the end of the day. And we do this work with love, respect and a quiet determination so that our kids, toddler or teen, shorty or forty, will always remember that they had a Mom who loved them forever, liked them for always. As long as WE are living, our babies they'll be.

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What Valentine's Day has come to mean to me since "Life with Autism, Seizures, & a side of PANDAS"

I love how on each Valentine's Day until such time as Brandon is healed, I get to be reminded of what true, unconditional love is.

We went to court for Guardianship of Brandon on Valentine's Day of 2012...

On each Valentine's Day, I have his annual Guardianship update paperwork to fill out and submit. You have to submit that paperwork each year on the Anniversary of when Guardianship was Granted...

On Valentine's Day of 2012 Todd and I appeared in Harris County Court before a Judge to show the ultimate act of love for our son...

In swearing to care for and advocate for him as guardians.

To give our all to him in that way, meant that more often than not, there would be nothing left for us. Physically, Emotionally, Mentally, and most of all --- FINANCIALLY.

Guardianship - does not come with provision.

So many Valentine's Day gifts this week in white tents in parking lots full of the worlds view of "love" -- in things you can buy and give. Love isn't in those things at all. It is in what can't be bought and in what is given unconditionally. It is in doing something for someone who can never repay you. Love is a commitment to your son who cannot read, write, or talk, that you will advocate and protect his rights above all else. Love is being up all night, for 26 years and counting, with few exceptions. It is having traveled to so many doctors you lost count and doing anything you could to help. It is the determination in forging a path where there was none. Knowing that path would help others, though not necessarily you or your son. It is being bitten and bearing those scars. It is in the wretchedness of having to watch seizure upon seizure and not being able to stop them. It is in every cell in your mother's heart crying out in pain at the helplessness of it all. It is in constantly making the choices for him, not you, not your spouse, not your marriage. It is the financial, emotional, mental, & physical sacrifices you make for him each and every day. I say that last part again because it's worth repeating. The toll financially, emotionally, mentally, & physically is beyond imaginable. Borderline unsurvivable.

Continue reading "Autism Means 24/7/365 Love....and Exhaustion" »


"It Makes Me Feel Like A Grown Up" Dignified Housing In Connecticut

White picket fence my ideal home.jpg1Note:  THIS article brings us great joy! For years, many of us have been thinking about how and where our adult children with autism and other diagnoses will live. It's "easy" to say they will live us forever. It sounds good. It makes us feel good. But is it best for our kids? Hear me out. Look at Nick Sinacori's statement, "It makes me feel like a grown up."  He's 26. He is a man. This might be the first time he has ever felt like something other than "someone's son." I've been thinking about how Autism Age, our formal name, can work on housing ideas here in Connecticut. Our state is very expensive. A newer two bedroom apartment in my area will cost a minimum of $2300 a month. SSI is around $800.  Add $194 in food benefits and you're still unable to afford average housing here.  For many, congregate living in not an option due to noise, sleep habits, and behaviors. I am always looking for people who have ideas and knowledge about grants, fund raising and how we can create models that work - for the men and women we call..... our children. 

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For nearly 20 developmentally disabled young people, the new Bear Woods apartments in Canton offer their first chance to live outside their families’ homes.

“I feel really good to be here — it makes me feel like a grownup,” said Nick Sinacori, 26, who until now has had to live with his parents at their house in Simsbury.

From the outside Bear Woods looks much like any other newly built apartment complex, but officials at Favarh believe it’s a model that could transform housing for the developmentally disabled.

They’re opening a similar complex in Bloomfield this summer for middle-aged and older tenants, and are hearing from other organizations for the developmentally disabled inquiring about the logistics, financing and day-to-day operations. Read more at the Hartford Courant.


The Needle of Justice: By Shirley Blaier-Stein

The Needle of JusticeIt's a blizzardy morning here in Connecticut and much of Mid-Atlantic and NorthEast. How about a cup of coffee or tea and FREE chapter of a The Needle of Justice, a new book from the sharp legal mind of lawyer/autism Mom Shirley Blaier-Stein? Shirley lived here in Connecticut for many years. She's a warrior Mom who returned to Israel when her husband was appointed to the Supreme Court. The timing of the novel with the novel virus is perfect.  Click HERE to download a FREE first chapter!

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Maya Stone, an autism mom from Fairview, Connecticut, dealing with her son Ben’s day-to-day hardship, observes in horror how the number of children affected by neurological disorders in the United States is rising exponentially and nobody can explain why. Maya, who used to practice law, comes up with a legal theory that turns into a class action involving many families in order to expose the truth behind the suffering of so many children. How far would the defendants go to protect their multimillion-dollar enterprise? Would Maya’s son stay safe? How will the needle of justice turn?


We Made Our Match!

Beverly Hillbillies colorA big thank you to everyone for helping us meet our $5,000 matching gift donor campaign!I have no plans to install an Age of Autism cee-ment pond here in our Connecticut "headquarters," but I can promise you that 10 grand is black gold and Texas tea toward keeping us up and running in 2021.  Letters and emails with IRS info are forthcoming.  What a year, eh?  We'll continue to follow Covid, the big V topic that gets us in so much trouble and cost us our ability to keep most sponsors (always thank you to Jennifer Larsen and The Holland Center for their unwavering support), and of course, first, last and always the AGEING of autism. We will never forget Dan Olmsted's mission.

Thank you so very much to Laura Hayes for her generous match. And if anyone one cares to start a match of their own - let me know!

With great affection,

Kim


As Autism Ages - Join Our Giving Tuesday Matching Gift Program

Heart that givesWe aren't there yet with a few hours to go for our matching gift from Laura Hayes!!!  Use our Bank of America secure merchant system or send a good old fashioned paper check to Autism Age PO Box 110546 Trumbull, CT 06611. $5,000 matched is a lot of money to help keep AofA going into 2021. We are a "postcard" non-profit according to the IRS. That's a polite way of saying "elfin" money-wise. Or "kitchen table." We're a small business. Mom and... well, there's just Mom now, but you get the point. We have work to do in 2021 to support autism families. And with your help? We'll do it!

THANK YOU!  Kim Rossi Managing Editor, Mom, Tired....  DONATE!


And The Tree Was.... Happy?

C621301B-DDA7-409B-88ED-F80529BE992AAre you familiar with Shel Silverstein’s classic book called “The Giving Tree”? This photo popped up in my Facebook memories yesterday.  I signed a copy of this book on Christmas, 1995 as a gift for my first born daughter.  I knew that I would give anything and everything I could to her. I did not know that autism would mean I would have to give quite so much, maybe even down to a stump.

I have seen so many social media posts from families really struggling during this COVID culture. Violence at home. Children from young to adult having dangerous behaviors as as a result of the tumultuous changes. The losses.  Suffering depression. Malaise. Loss of skills.

We try to cover many topics on AofA, but I always want to return to our heart and soul. The men and women, mothers and fathers, the children facing the unfathomable and ever changing challenges of life and autism.  So I ask you, HOW ARE YOU DOING?  For real. Not the stuff we tell our families and friends so as to keep the conversation light. What are your needs right now? How can we help each other.  Leave your comments. Use your name or not - if you need anonymity, we understand. If you are really in need, email me personally at KimRossi1111@gmail.com and I'll try to connect you with help.

Some days I am indeed ground right down to a stump with the work required to take care of every aspect of life for three beautiful ladies with autism. That said.... I AM happy. Not the happy I imagined as I held my daughter almost 26 years ago as a young wife. But happy nonetheless. I'd love to hear from you. Let me know.



Be Courageous! New Video on Global Unity for Health Freedom in the Era of COVID

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Age of Autism is proud to present an urgent COVID-era UNIFIED message from dozens of organizations and nations who are fighting for your health and your medical freedom.  You'll see many familiar faces -  including our own Mark Blaxill and me. As we say in the video "BE COURAGEOUS" - share this video. I suggest we all screen record it as well, in case VIMEO pulls it down.

https://vimeo.com/457783711

Unity Video from bburrowes on Vimeo

Organizations in Unity:

Children’s Health Defense
The Institute for Pure and Applied Knowledge 
The Bolen Report
GreenMedInfo
Autism Action Network
DeMoss Chiropractic
California Jam
Health Choice 4 Action

Continue reading "Be Courageous! New Video on Global Unity for Health Freedom in the Era of COVID" »


Autism Caption Contest

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Posted with permission from Michelle Guppy.  Many of you will recognize her handsome son, 20-something Brandon, who is wracked with seizures and autism. Go ahead and provide a caption. The playhouse is for Michelle's darling grandson, her Grandfishy. But she snapped this photo and well, I had to ask if we could share it and she generously said, "yes."  I was reminded of the old Tom Hanks movie "Big," when he jumped into top of the the bunk bed after his date. But there is no Zoltan machine to change the past for Brandon or any of our adult children with autism.


Be part of a Parenting Special for Transmission Times:

Radio micNote: 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


Insider Look at Autism and Aggressive Destruction of Property

B249F6DD-BBE0-4873-9C1D-33654FC3876B 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

Sometimes autistic kids, and the adults they grow up to be, are really hard on physical things. Sometimes they consistently break devices or furniture, or take them apart. What many frustrated parents and caregivers may not understand is that there is usually a reason behind these urges; it's not just random autistic behavior. And if parents can try to figure out why their children have these needs, and then accommodate them as much as they can, everyone can have a much easier time. Not always, but in many cases.

With this in mind, we talked to two advocates with both personal and professional experience in this area: Ivanova Smith, and Aiyana Bailin. Here's what they had to say; we hope it is helpful to you.
 
Thinking Person's Guide to Autism: Tell us a little bit about yourselves
 
Ivanova Smith: I am a self advocate leader in Washington State. I am Chair of Self Advocates in Leadership, and Member of People First of Washington. 
 
Aiyana Bailin: I've been a respite care worker for over seven years. I've worked with kids and young adults with various developmental disabilities (Down syndrome, cerebral palsy, etc.), but I specialize in "severe" autism. Or rather, I prefer "profoundly autistic clients," because we generally get along really well. I'm probably on the spectrum, but have never tried to get diagnosed.
 
TPGA: When you see parents complain about autistic children or youths destroying furniture or other household objects, how does that make you feel?
 
Ivanova: When I see the media complaining about autistic people it makes me feel sad. I also think it is not an effective way of helping the situation. There are ways to work with autistic people that help, but that do not stop autistic people from having freedom of experience. 
 
Aiyana: I don't have a general answer to this. There are a lot of factors—tone, intended audience, etc. But often, I think parents need to be more careful about how they discuss their autistic (or otherwise disabled) kids. These kids already feel like they cause their parents a lot of stress, and they can be very sensitive about it.
 
TPGA: What do you think makes some autistic children need to take things apart? 
 
Ivanova: For many autistic people, we do not only have sensory experiences that are negative. Lots of autistics, especially those with intellectual disabilities, and/or who are non-speaking, also sensory seek. Sensory seeking is when the autistic person seeks out a sensory stimulus. Stimming is actually a form of this. 
 
Staring at certain objects and taking them apart is stimulating. Have you ever taken a pen apart? For me I really like lights and water, I like touching fountains, water, and feeling water move. 
 
Lots of times autistics need to avoid sudden sensory things, but can also seek out sensory things. Autistic people need understanding for both sensory issues, and sensory seeking. It is important to allow autistics to sensory seek. It as important as allowing us to stim. 
 
TPGA: Do you have ideas for how parents might be able to help those children?
 
Ivanova: I understand that property damage can be frustrating. I know my family struggled with it when I didn’t understand. I wore out the lazy boy armchairs because of my intense rocking. It would been helpful to have armchairs that were adapted for autistics who wear things out.

Continue reading "Insider Look at Autism and Aggressive Destruction of Property" »


AUTISM in the Time of COVID: Guilt, Histories, and the Village

Barb and Dan 2
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 MoonThe 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.

Continue reading "AUTISM in the Time of COVID: Guilt, Histories, and the Village" »


COVID-19 Kills Top School for Autism

We rise by lifting othersHi, 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

You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I'll rise.
 
Does my sassiness upset you?
Why are you beset with gloom?
’Cause I walk like I've got oil wells
Pumping in my living room.
 
Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Continue reading "COVID-19 Kills Top School for Autism" »


It's Giving Tuesday A Global Campaign of Support

Giving tuesday
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


Joanie Calem On Her Son's Journey in Art School with Autism

Joanie calemNote: 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.

Continue reading "Joanie Calem On Her Son's Journey in Art School with Autism" »


Support Age of Autism With Amazon Smile This Valentine's Day

Amazon smile Twitter

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!


Score one for the GOOD Guys! Pizza Inn in South Carolina Defends Worker with Autism.

Heart pizzaNote: 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.


Celebrating an Electric Yule Log Christmas

Christmas_angel-3By 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 Christmas girlsthe 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 Donation Days to Age of Autism

Thank you typeDecember 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


Support Age of Autism with Amazon Smile's Cyber Monday!

Cyber Monday
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


Autism Community: "One Day We’ll Die and What We’re Doing About It" (Sugey One)

Rosie Rich EBy 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 Rosie (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.

Continue reading "Autism Community: "One Day We’ll Die and What We’re Doing About It" (Sugey One)" »


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

WeepNote: 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.

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


Amazon Prime Day 7/15 and 16 Support Age of Autism Through SMILE!

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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.


Age of Autism Fund Raiser Against The Summer of Censorship

Summer moneyHello, 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


The Day Frank Sinatra Provided a Fund Raising Idea for Age of Autism

Thank you typeHello, 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


Elmo in a Row: This is Autism Too

TVs lined Up
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


Tender Moment from Tough Cops for Man with Autism

William-congreve-quote-music-hath-charms-to-soothe-a-savage-breast-toNote: 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.

Continue reading "Tender Moment from Tough Cops for Man with Autism" »


February 2, Again? Not for our Loved Ones with Autism.

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



Amazon Smile Magazine Subscription Bonanza Benefits Autism Age!

Amazon Smile magazine
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.

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Fascinating Acceptance Experiment at English Restaurant Staffed By Dementia Sufferers

Meme Your JobI'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.



San Diego Man Diagnosed with Severe Autism As Tot Defies Prognosis, Passes Bar Exam

Dream jobThis 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.

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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.


Happy New Year! Let's Get to Work as Autism Ages.

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


VillaKey Launches Autism Friendly Vacation Rentals

Retro tiredNote: 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.


To The Parent Who Beeped At Me in the Drop Off Line Today

Strong-womenNote: 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.


Cheesecake Factory Honors The Spirit of Christmas for Intellectually Disabled Young Adult

Cheesecake factoryHi, 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


Enjoy Watching Holly Star on DVD and Amazon Prime!

Holly StarrThe December holidays are upon us.  We usually suggest books and films related to autism, however, we invite you to rent (on Amazon Prime) or buy Holly Star, a Michael Nickles film,  because the producer is Scott Taylor, husband of Ginger Taylor!   Congratulations, Scott and Ginger!
 

Watch the trailer here.

Sloan returns home for the holidays and gets caught up in a mysterious treasure hunt with her paintball-obsessed best friend; her tango-dancing grandmother; her childhood sweetheart; and Santa.

Click here, here, here!

As Autism Ages: What's Your Biggest Worry?

FutureMy 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


Age of Autism November Matching Gift Campaign

Gratefull Donateful

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

Continue reading "Age of Autism November Matching Gift Campaign" »


Annual Age of Autism Thanksgiving Matching Donor Campaign is Underway

Giving thanks
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!

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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


Puzzles Bakery in Schenectady Featured on The Today Show

PuzzlesA 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.