Dreams

Special Needs Trusts or Able Accounts?

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

###

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

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

Please email Eric.Goldsmith@nm.com for the Zoom Link and for materials after the webinar.


Empowering Ability Presents a Life Plan Online Workshop

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

No sweat.

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

###

Click Hear to Learn More from Empowering Ability

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

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

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

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

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


American Speech Language Hearing Association Denies Spelling Efficacy

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

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

###

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

September 17, 2022

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

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

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

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

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







Grief in Those with Intellectual Disability

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

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

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


Communication Means Freedom to Shine

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

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

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

###

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

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

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

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

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

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

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

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

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

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

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

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

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

  Read the full news report & watch the video here.



Order a Big Red Safety Teacher Toolkit from National Autism Association

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

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

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

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

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

1st Day Blues

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

 


The Last First

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

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

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




Autism After 22 The Secret

B4C8ED4B-2839-4C37-A122-6D83EE1788FE

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


Autism One Returns August 18 - 21

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

Learn more about the conference HERE.

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

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

From AutismOne: SUPPORT AND EDUCATION FOR PARENTS.

www.AutismOne.org


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

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

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

XOX


Support Age of Autism on Amazon Prime Day 2022!

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

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

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

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


Snug as a Hug on the Rug

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

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

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

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

Bouncyband pea pod

 

 

 

Are you using sensory aids in your home?


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

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

###

GIVE A VOICE PROGRAM

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

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

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

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

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

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

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

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

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

Give A Voice Applications are now being accepted.

Click here to download an S2C/RPM application.

Click here to download an iPad AAC application.

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


Required Viewing - Like It's 1974

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

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




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

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

###

May 05, 2022

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

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

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

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

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

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

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


Invitation to Sponsor a Ukrainian Autism Family Coming to Vermont

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

Please email Kim at AutismAges@gmail.com or Agape4Ukraine@gmail.com if you think you might be interested. Thank you. XOX


Do You Ever Really Rest?

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

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

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

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




We Need Puzzles Bakery and Cafe in Schenectady

Puzzles exterior Puzzles treats

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

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

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

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

###

Written March 13, 2016 by Kim Rossi

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

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

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

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

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


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

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

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


National Autism Association Grants for Assistive Technology and Spelling!

NAA voice

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

Click National Autism Association Give A Voice Program

###

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

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

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

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

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

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

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

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

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

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





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

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

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

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

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


Autism Bites

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

My bite is much worse than my bark.

###

Feeling very emotional.

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


The Power of Love Over Exhaustion

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

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

Continue reading "The Power of Love Over Exhaustion" »


Supplies & Support for Ukraine Families with Medically Fragile Children

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

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


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

Email me at AutismAges@gmail.com. Thank you. Kim


Ready Set Learn Forever

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

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

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


Amazon Wish List for Ukrainian Children with Special Needs & Autism

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

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

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

  If you have issues, let me know at AutismAges@gmail.com. Thank you.


AMAZON UKRAINE LIST

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

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

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


ABA Yay or Nay

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

###

Autism Society to Issue a Position Paper on the Topic

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


Life With Autism In Pictures But Banned on Facebook

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

###

Life With Autism In Pictures Silent Surrender

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

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

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

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

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

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


A Letter to My Mother, All the Way In Heaven

Jenny  Flora Rose
Flora and Jenny Rose

Hello, dear readers. Today's post is a tribute to Gayle DeLong, by her oldest Jennifer Rose.  Gayle died on January 5 of 2022, after a battle with breast cancer. Jenny wrote a terrific book called "It's Not a Perfect World, But I'll Take It."  Surely this tribute is another chapter in the journey of a young adult with autism that no one wanted to write. Please join us in sending care and comfort to Jenny and her little sister Flora, who also has autism, and who may be struggling to understand the meaning of death and loss.  Their Dad, Jonathan Rose, has been a stalwart beacon of strength for Gayle and his daughters. Let's not forget him in our prayers. Jenny created a music playlist for her Mom - you can access it here.

###

By Jennifer Rose

Are you there, Mom? It’s me, Jenny. Man, oh man, I’ve got so much to say, and yet, I honestly have no idea what to say to you. Family photo 2021 Our relationship was…complicated, and while we’d sometimes fight as mother and daughter would, you were my mother and at the end of the day, I still loved you. No matter what happened, all I wanted was to see you happy. Of course, if Mama ain’t happy, ain’t nobody happy!

It hasn’t been 24 hours, and already I’m streaming a grief playlist in your honour. Right now, I’m streaming “Hey Jude” by the Beatles. Remember how impressed you were at Flora, our daughter/sister that she was listening to classical music along with watching Nick Jr? (Okay, we could do without about 1,000 plays of the tape of Paul McCartney as a drugged-out 50-year-old, but that’s another story.)

But enough about me. I loved you, because you took care of me from birth, and nursed me back to health when I was sick, and believe me, I was sick quite a bit! Because, hey, that’s what mothers do. And that’s not even getting to the time you got me into a trip to Israel, and all you said was “Isn’t there another trip?” when I was booted out of one trip. Seriously, even Grandpa said more words at my first birthday, and he all-too-well lived up to the stereotype of Jewish husbands not talking a lot.

Jennifer Rose bookSomedays I just feel like I want to quit, and just be normal for a bit. Then I realize that my family isn’t, and never will be, normal. But hey, we’re handling everything the best we can. Because you know what? We’re not normal. We’re much, much better than normal. We are resilient. And we’re so because we had you for a mother.

Through your work through the Children’s Health Defense, with the great Robert Kennedy Jr., you helped children have a bright, healthy future. To quote actress Jane Fonda, Robert Kennedy “has the gift of telling vivid stories that explain how and why power is made to yield.” He has used his gift to help countless lives, whether through his environmental or autism work. It’s only natural that such an amazing man would work with you, my equally amazing mother.

I’ll have to admit, like any 16-year-old girl, sometimes I could get self-conscious about how “pretty” my life was, but I was struggling to find myself in an environment that was either over- or under-whelming. As a child of two worlds, so to speak, neither severely handicapped nor high-functioning enough to pass as fully “neurotypical”, it was always hard for me to fit in. Feeling alone, I would often escape into my own fantasy worlds, whether through pop culture or my own imagination. Even today, I’m trying to “find myself.” But, I can reassure you, someday I will be found.

When I found out you were terminally sick this Christmas, all I wanted was for you to be well and happy. That’s why I pitched in with Dad to help however I could. Seriously, if Stephen Merchant- my favorite actor and comedian and current “special interest”- had come up to my doorstep for Christmas dinner with Dad and me, I would’ve turned it down if it meant you got better. Holidays like Mother’s Day & Christmas won’t be the same without you. You were an absolutely beautiful soul, and no matter what, you’ll always be my mother.


Support the New Poetic Justice Platform for Autistim Creativity & Communication

Lina Hjalmarsson LyonsNote: We introduced readers to Lina Hjalmarsson Lyons' new publishing platform for the autism community: PoeticJustice.press. Not the Moms and Dads and providers, but the boys and girls, men and women with autism who may prefer to be called autists or autistics or just by their names. Spelling has been a new road to success for many. Not all. But we have to promote and push and praise all progress.  All of it.  Lina is the daughter of author Helina Hjalmarsson and Skyhorse Publishing's Tony Lyons.  Please share her site widely.  Thank you.

###

Hello, I am Lina. So nice to meet you here. I am a nonspeaking speller. I am really smart and incredibly perceptive. I want to create a really lovely space for people who rarely find the right spoken words.

With Universal Enthusiasm,

Lina Hjalmarsson Lyons, Editor in Chief

Congratulations– you have arrived. We are looking forward to co-creating with you a community of rebels, creative minds, changemakers, pathfinders, nonspeakers, communicators, spellers. Visit the Blog page to peruse our online publication, meet us on the Rebellious Editors page, or become a contributor on the Submit Work/Contact Us page. Contributors are teenagers or young adults who use some form of assisted communication.

We intend for this site to be a place for spellers to publish their work as well as a forum for real social exchange. Let’s make full use of the comments section below each post to enter into a dialogue about our work and ourselves.

“HELPED are those who create anything at all, for they shall relive the thrill of their own conception, and realize a partnership in the creation of the Universe that keeps them responsible and cheerful.” Alice Walker, Helped Are Those


We Need a Little Christmas

Merry Christmas!



Haul out the holly
Put up the tree before my spirit falls again
Fill up the stocking
I may be rushing things, but deck the halls again now
For we need a little Christmas, right this very minute
Candles in the window, carols at the spinet
Yes, we need a little Christmas, right this very minute
Hasn't snowed a single flurry, but Santa dear we're in a hurry
Climb down the chimney
Turn on the brightest string of lights I've ever seen
Slice up the fruit cake
It's time we've hung some tinsel on the evergreen bough
For I've grown a little leaner, grown a little colder
Grown a little sadder, grown a little older
And I need a little angel sitting on my shoulder
Need a little Christmas now
For we need a little music, need a little laughter
Need a little singing ringing through the rafter
And we need a little snappy, happy ever after
We need a little Christmas now

Thankful Tuesday

Thank you donationI want to thank each and every donor during 2021, and especially during our matching gift campaign.  Your generosity in this tough year has bowled me over.  Our matching gift program launched with a large donation of cryptocurrency that opened a new revenue stream for us. Individual donations poured in throughout November and we blew away our goal with a final tally just over $11,000 PLUS Laura Hayes $5,000 matching gift. This means we enter our 15th year of publication going strong. Last Spring, I was very close to shutting us down as of January, 2022. AofA seemed superfluous. Then I realized, no way. We're needed now more than ever as kids age out into adulthood and COVID affects the globe with the architects we've been writing about for years. And we are, a family. One that I'll never divorce.  (Wink, wink.)  So THANK YOU!

It's giving Tuesday. If you would like to donate, please use our DONATE button (scroll down to the orange button) - it goes through Bank of America and is secure.  Send a check to Autism Age, PO Box 110546 Trumbull CT 06611. We can also accept Crypto through Coinbase, and other methods of capital gains, just email me, Kim Rossi at AutismAges@gmail.com

Kim, Mia, Gianna and Isabella


Lina Hjalmarsson Lyons Launches PoeticJustice.press for Non-Speakers

Lina Hjalmarsson LyonsAnnouncing PoeticJustice.press.

The beautiful apple does not fall far from the tree. Lina Hjalmarsson Lyons, daughter of writer Helena Hjalmarsson and Skyhorse Publisher Tony Lyons has launched a publishing platform for non-speaking teens and young adults. Please join us as we congratulate Lina on her new venture, and share the link PoeticJustice.press across ALL platforms.  Hello, Lina!

###

Hello, I am Lina. So nice to meet you here. I am a nonspeaking speller. I am really smart and incredibly perceptive. I want to create a really lovely space for people who rarely find the right spoken words.

With Universal Enthusiasm,

Lina Hjalmarsson Lyons, Editor in Chief

Congratulations– you have arrived. We are looking forward to co-creating with you a community of rebels, creative minds, changemakers, pathfinders, nonspeakers, communicators, spellers. Visit the Blog page to peruse our online publication, meet us on the Rebellious Editors page, or become a contributor on the Submit Work/Contact Us page. Contributors are teenagers or young adults who use some form of assisted communication.

We intend for this site to be a place for spellers to publish their work as well as a forum for real social exchange. Let’s make full use of the comments section below each post to enter into a dialogue about our work and ourselves.

You can find PoeticJustic.press here.

 


Autism: You See a Mess. We See Progress.

551B0344-3569-447E-B001-48146488D2D1I walked into the bathroom yesterday to this sight.

I don't have a dog.  I don't have a cat. I have three adult daughters with autism.

I squealed with delight.

Why?

Progress. I saw progress. An adult with autism was trying to be independent. A female adult. Think of the safety benefit when she masters this skill that most parents take for granted once their kids start school.

I see self-care. Self-defense. Progress. 

 


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: 

###

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.

###

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

5B7DBE10-E5A9-46A2-A6A8-94F23A2B47CA


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

66AF565D-9966-467D-BA7D-4AF467773BAF

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.

###


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.

###

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. 

###


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!

###

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.