By Kim Rossi

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

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

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

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

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

She hovered over him.

She took what belonged to him.

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

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

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

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

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

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

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

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

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

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

My daughters have access to a day program. They each have a budget. But the staffing shortage is so severe that they are often unable to attend. The scattershot schedule wreaks havoc on them. Me? Forget about it. I rarely have a day where all three daughters are in program. Yesterday, one daughter was called out at 7:00am and called back in at 7:30am! We function. We survive. But it's not ideal by any stretch of the imagination. I was proud that my youngest was able to use her ProLoQuo to share her feelings with me. What do you have for your adult kids on the spectrum?

Kim

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

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

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

Ridgefield school board member sorry for referring to certain students as 'bottom of the bucket'

Guess which students.

By Kim Rossi

This post reminds me of my HuffPo days, when I could pop online and vent my spleen against some dingbat who showed callous disregard and disrespect to my three daughters and everyone with autism. Feels kind of good. It will NOT feel good to Ridgefield school board member Sean McEvoy whose appalling description (bottom of the bucket) of special education students in tony Ridgefield, Connecticut (2 towns away from my home) exposed the dirty truth of special education. From the top, our children are tolerated at best, and as budgets stretch tighter than a toddler t-shirt on Dolly Parton, anger will bubble to the surface. 

Mr. Sean McEvoy proclaims himself on LinkedIn as "The Alton Brown of Networking, with the ability to simply explain complex networking concepts." You sir, are NO Alton Brown. I have met Alton Brown and cooked with him in a class.  Your recipe would be thrown right in the trash.  Allow me to explain a simple concept to you, it's called RESPECT.  Spend a day in any of the special education classrooms in Ridgefield. Drop in on a family at dinnertime.  Try managing a classroom as well as any of your teachers, paras and specialists, most of whom work like dogs to explain complex education concepts to their students.

By the way Mr. Networking expert, according to LinkedIn you attended The University of Bridgeport, just a few miles from my home in Trumbull. Are they still owned by the Moonies? I see their acceptance rate is 73% and they are considered "moderately selective." In other words, they take students in the lower part of the barrel. What a coincidence.

How about asking WHY are there so many students needing special education? Spend a few minutes reading Anne Dachel's Loss of Braintrust website. We have a global education catastrophe growing every day. McEvoy has a point, although he made it in the worst possible way. He blamed THE CHILDREN instead of......

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Ridgefield school board member sorry for referring to certain students as 'bottom of the bucket'

RIDGEFIELD — A school board member publicly apologized this week for referring to children who are behind their peers as the "bottom of the bucket."

Parents and other Board of Education members condemned Sean McEvoy's comments, which came during a Sept. 11 meeting where the board and school officials discussed exploring opportunities for gifted and talented children.

The backlash to McEvoy's comments was swift, sparking more than a dozen emails to the school board and numerous angry comments on social media from community members who said the remarks were insulting to special education students.

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

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

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

     By Kim Rossi

I do this every so often. I’ll post a simple photo that looks random, run of the mill. Something most folks would ignore and yet, stands out as a glaring catastrophe averted in my home. Feast your eyes on our groovy 1970s bed sheets. Exactly the pattern of my wallpaper, sheets and the desk drawers my Mom also wallpapered some 50 (gulp) years ago. I saw them on Marketplace and couldn't resist getting them for my daughter. That blanket is my older (sorry, Shelly) sister's sleeping bag, covered with Peace, Love and other groovy late 1960s graphics. I call it the "looooovvvve" blanket. I used to take it to the beach in the 1980s to the delight of everyone who saw it.

Now, take a closer look, and imagine me, getting my daughters squared away in the morning and “throwing” or making the beds at a careless clip. Boom. Doom.The remote would have been lost. Madness would ensue. Meltdowns imminent.

These are the small, cluster bombs strewn about an autism home. Liable to ignite at any moment into an inconsolable moment, minute, hour, day or more. 

I returned the remote to the family room, grateful to have seen it.

This is our autism. What’s yours?

Kim
### From Skyhorse Publishing

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

#1 Seller in Forensic Medicine

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

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

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

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

By Kim Rossi

Yesterday, at 6:15am, I woke to the sound of my daughter's bed moving around the floor. Uh oh! The Exorcist, you might worry? No.  We couldn't get that lucky.  There's no priest to call with autism. I knew instantly that she was looking for one of her dozen papers. And that my morning was fully underway.

Many years ago, she started requesting screen shots of YouTube videos. Mostly classic Sesame Street, Elmo's World, Blue's Clues, Between The Lions and Jay Jay the Jet Plane. Think PBS Kids back in 1998. Printing full sized photos was costing a fortune in ink. A smart, young staffer suggested I copy the photos into WORD, shrink them, and then print them much smaller. "GREAT!" And then, autism took over. The idea worked SO WELL that my daughter began asking for more, and more, and more. They serve a purpose for her. There is an order that you or I can't see.  And she KNOWS when she is missing one paper, and often when a single, tiny photo falls off.

And we're back to the bed moving around her floor.  "Where's the cat? Where's the cat?" Sometimes I can find the 1/4" square with tape on the floor. Mostly I have to pray she can give me enough information to find the video clip and print a new picture.  Yesterday, I got lucky. Buy a Power ball lottery ticket lucky. She said, "Cat. Sesame Street. Moon." AH HA!  That's "Hey Diddle Diddle" from Sesame Street with Edgar Turtle who plays the banjo! Sure enough, I pulled up the video, she smiled and said, "CAT." Cat-astrophe averted!

Few people understand the level of detail it takes to help an autistic person. Most AofA readers know. Tell me something only you can do for your child. And how you hope to translate it for someone else.

And the dish ran away with the spoon.

KIM

###

Order today, from Skyhorse Publishing.

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

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

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

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

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

Update: When Mia came home from program, she was wearing pants. Her staff said she arrived at program and immediately grabbed a pair of blue jeans out of her locker. She fooled me!   I love it.

Last Friday, the weather report called for temps in the high 80s here in Connecticut.  I laid out clothes for Gianna, shorts and a T-shirt.  Easy peasy. I helped Bella get dressed in shorts and a T-shirt. Lemon squeezey. I approached the bed with pair of shorts in my hands for Mia. Cue the JAWS music. Mia dreads the seasonal clothing switch.  She wears the pants in this family - every day! To my delight, she put the short on without a fuss. Like the debt ceiling vote, I had to make a concession. I brought out a lightweight SWEATshirt, instead of a T-shirt. "Big shirt," she said. "Yes, Mia, big shirt with shorts today."

I know that our families with teen and adult sons often have to help them shave. That must be a very difficult task. Then I picture myself shaving six legs and six underarms! I kneel down, lean into the shower, get drenched and somehow the job gets done. These are the things we do for our "kids" that few think about. The day in, day out acts of love and kindness to help them. I've been doing this a long, long time. How long? This Nair commercial ran the year I graduated from Boston College, and my oldest is closing in on 29. Back in the day, Flicker was our razor of choice. Ladies, you can smell the ad, right? Lord, Nair stunk to high heaven!  What seasonal changes affect YOUR kids?

Happy Mother's Day weekend. WE SEE YOU.
Cathy will be here tomorrow with something cheerier.  It’s not wrong, though! XOX

Few understand true love like we do. Happy Valentine’s Day. We’ve been accused on NOT loving our children, because we don’t accept them as they are. Even those close to us rarely know the ocean deep commitment, bone deep exhaustion of working 24/7/365 to provide everything - that’s the best word, right? Everything our kids need. We do it through their childhood and then we have to create it out of whole cloth for adulthood. Because we love our children. A love few can understand, let alone handle. 

Happy Valentine’s Day. We see you. We are proud of you. We are you. Love, Kim

New guidance: Use drugs, surgery early for obesity in kids

By Kim Rossi Your pediatrician is being told by her union (the AAP) that she should put your  overweight 12 year old on weight loss drugs, and schedule bariatric surgery for your obese teenager. This is the same AAP that gets its funding from Coca Cola. The same AAP that has presided over the sickest generation in history. The same AAP that injected hundreds of micrograms of mercury into infants and toddlers without a second thought, hell, without a FIRST thought. The same AAP that watched autism soar from 1 in 10,000 to can't swing a dead cat. They will drug and cut your child rather demand the changes needed for real health.  This is an insanity even the most pharma obedient American should view with shock and horror.  It's a complete dereliction of duty by the physicians and frankly, by parents as well. Obesity doesn't happen overnight. It happens with the first Gatorade at age 2 because the color is fun and she just wants a sip. It happens with a McHappy Meal loaded with sugar. It happens because we LET it happen.  Worse?  Almost three quarters of pediatricians are WOMEN - white women responsible for children's health. In a medical field that had once been overwhelmingly dominated by men, pediatrics is fast developing into what will be a female dominated medical practice. (Source, Career Trend)  Have they no shame? Or are they just the laziest sons of bitches to ever malpractice? Is Pediatrics the med school version of "rocks for jocks" - what we used to call geology class as the science requirement in liberal arts programs.  the kids suffering the highest obesity rates are Black and Hispanic. So what's really going on looks dangerously racist, putting ChOC on weight loss drugs and operating on them. Then expecting their FAMILIES, under whose care they became obese, to then adhere to the rigorous post bariatric eating habits needed to succeed. On what planet is anything of this realistic? 

We'd laugh out loud if this weren't so predictable and absurd.  Not to mention dangerous. Take a peek at Mayo Clinic's primer on weight loss drugs. Frightening side effects. But danger seems to be the AAP's stock in trade. While their patients suffer from failure to thrive, they themselves bloom on fear, dismissal, disregard. They pledge a blind allegiance and alliance to the pharmaceutical industry.  And now, they are funneling kids to surgeons. Trans surgery has whet the appetite for a new market - fat kids. Scalpels raised with surgical group profits. What positive attribute can you possibly assign to a medical specialty that has all but destroyed their patients' lives?  In 2008, Mark Blaxill wrote an article, Support Your Pediatrician, Condemn their Union. They have not earned our respect or support. They have sold children so far down the river, they'll drown in the ocean of pharma.

Many AofAers know first hand how little pediatricians do to promote health. We learned the hard way. But this latest announcement should open the eyes of every parent or expectant parent. Should. But will it? Fat chance.

New guidance: Use drugs, surgery early for obesity in kids

Children struggling with obesity should be evaluated and treated early and aggressively, including with medications for kids as young as 12 and surgery for those as young as 13, according to new guidelines released Monday.

The longstanding practice of “watchful waiting,” or delaying treatment to see whether children and teens outgrow or overcome obesity on their own only worsens the problem that affects more than 14.4 million young people in the U.S. Left untreated, obesity can lead to lifelong health problems, including high blood pressure, diabetes and depression.

“Waiting doesn’t work,” said Dr. Ihuoma Eneli, co-author of the first guidance on childhood obesity in 15 years from the American Academy of Pediatrics. “What we see is a continuation of weight gain and the likelihood that they’ll have (obesity) in adulthood.”

For the first time, the group’s guidance sets ages at which kids and teens should be offered medical treatments such as drugs and surgery — in addition to intensive diet, exercise and other behavior and lifestyle interventions, said Eneli, director of the Center for Healthy Weight and Nutrition at Nationwide Children’s Hospital.

In general, doctors should offer adolescents 12 and older who have obesity access to appropriate drugs and teens 13 and older with severe obesity referrals for weight-loss surgery, though situations may vary.

Click the title or book cover to purchase.

Lies My Government Told Me And The Better Future Coming By Dr. Robert Malone

With contributed chapters from other leading thinkers, such as Dr. Paul Marik and Professor Mattias Desmet, and drawing upon history, psychology, and economics, Lies My Gov’t Told Me looks at COVID from numerous angles. Never satisfied with a simple answer or easy solution, Dr. Malone proposes multiple action plans for a better future.

Cause Unknown By Ed Dowd

A 40 percent increase in deaths is literally earth-shaking. Even a 10 percent increase in excess deaths would have been a 1-in-200-year event. But this was 40 percent. And therein lies a story—a story that starts with obvious questions

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In my daughters’ Day Service Program, this is DSP Appreciation Week. A DSP is a Day Service Provider, akin to a paraprofessional at school. They are the 1:1 staff who are with our adult children at their programs. Those who have a program. Their work is hard. Their pay is low.  Here in expensive Fairfield County Connecticut, the rate is $17.53 an hour.  Hiring is extremely difficult. as you can imagine. Many programs are turning down the severely behavioral individuals because they are A) difficult to staff and B) not profitable. They are autistic. Once a student ages out of school at age 22, there is NO LEGAL MANDATE to provide any services or supports.  No IDEA. No FAPE.  I'm bringing breakfast for the staff on Thursday. I wish I could do more. I need every one of them. Today, tomorrow and long after I'm gone.

Below is my comment on Facebook in response to the post by their post.  I hope I made my point to “everyone” who reads it. Looks up at corner office…

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Our AofAngel Laura Hayes sent me an email yesterday am telling me I was quoted on Dr. Mercola's site. Aw shucks!  Mercola asked a simple question IGNORED by our current and every former Administration: What’s Behind the Sudden Surge in Autism?  Due to censorship, Dr. Mercola's articles are like the cassette from Mission Impossible, they self destruct shortly after publication to subvert the censors.  I encourage you to subscribe to his newsletter. Dr. Mercola generously allows non-profits to share his work in full. I have linked the body copy of the full autism article below the jump, it will disappear from his site later today, Thursday, August 18.  Thanks.  Kim

What's Behind The Sudden Surge In Autism?

Rates of autism continue to increase in the U.S., with the latest estimates showing that 1 in 30, or 3.49%, of children ages 3 to 17 were diagnosed with autism spectrum disorder (ASD) in 2020.1The data, gathered in 2019 and 2020, came from the U.S. National Health Interview Survey (NHIS), and revealed that out of 12,554 children surveyed in 2019 and 2020, 410 were diagnosed with autism.2

The overall prevalence of autism in 2019 was 2.79%, increasing to 3.49% in 2020, which represents a 53% increase since 2017.3The study also revealed that autism prevalence increased from 2014 to 2016, decreased from 2016 to 2017, and then increased from 2017 to 2020.4 The stark rise in autism rates in the U.S. is difficult to ignore, but what’s driving the increase remains a mystery.

Are Higher Vaccination Rates Involved?

The U.S. Centers for Disease Control and Prevention puts out an estimated autism rate every four years, but the data looks primarily at higher-income families, which could lead to underestimates of the true autism rate. The NHIS data is more accurate, because it included data from lower-income families, revealing that the rate of autism in lower-income families is higher than in higher-income families...

...Many, like Dr. Marc Siegel at the New York University Grossman School of Medicine, continue to blame the rise in autism diagnoses on parents being more aware of autism signs in their children, but even he acknowledged, “there’s also probably something that women are exposed to in the womb that we don’t yet know about that could be causing it.”25  But as noted by Kim Rossi, managing editor of Age of Autism:26

“Autism numbers continue to rise unabated. But no one is really concerned … Notice how Siegel alludes to ‘something women are exposed to in the womb’ which is ‘probably’ also a factor. After thirty years of exploding autism statistics, we’re still totally uninterested in what that ‘something’ might be.”

Good morning. I found this photo on Facebook.  It's a look at the language we use with our loved ones with autism. Or, our autistic loved ones. Even that word choice is personal. Two of my daughters are in the adult services world. One is on the last few weeks of her school journey. If I were to convey one suggestion to everyone who is part of my daughters' lives, it would be to read this meme/photo and think about how we ALL speak about people with autism. Parents need to make a big mindset shift as our kids grow up. I had to re-calibrate how I think about and treat them. Sure, I'm their Mom. but my Mom doesn't treat me like a baby.  And I can't do that to my daughters. One still loves vintage Sesame Street on her iPad. One tracks the Nick Jr schedule like a guided missile. But they are WOMEN.  I never disallow the things that make them feel safe and happy. But I don't overly encourage them either. I want them to move them forward, while respecting the things they need and love.  They are adults with civil rights. I allow them to make choices. Skip breakfast? I sure did at 27 (and 37, and 47 and never you mind.) Decide what to wear? As long as it's within weather reason, yes. They are more than their behavior plans and Individual (Education Plans) and the world of DDS-speak.

They are human.

It's the day after Mother's Day. We hope you had good day, whatever that means to you. Many of us live a Through The Looking Glass version of parenthood, Moms and Dads alike. Same could be said for siblings. Some are grieving the loss of their child, like Tim and Sheri Welsh, whose son Tanner passed away in the Spring. Like Harry and Gina Tembenis who lost their Elias so many years ago. Holidays are just different when your child has a developmental disability. I'm of an age where my friends are celebrating their kids' weddings and first grandbabies. Not to be for me. Some of are single parents (raises hand) pulling double duty for our kids. The world moves forward, and often you feel left behind. Left out.

The girls and I drove to Massachusetts to visit my Mom for the day. It's not a bad drive, 143 miles North on I95 from Connecticut through Rhode Island into Massachusetts. We left at 10:00am and were home at 7:00pm. As I was getting a quick meal together for them, my doorbell rang. Standing there was my neighbor, a lovely Mom of 3 kids from 8 to late teens. She handed me a bouquet of flowers and said:

"You are a strong Mother. I see how hard you work. Happy Mother's Day."

I can't tell you the last time I felt so appreciated. Such simple words. Really struck my soul. I felt seen.I didn't even know that was important to me. I hope you feel seen from time to time too.

Kim

I would like the muckety mucks at The Autism Society of America to listen to this blacked out video of one of my daughters - who is in her 20s - keening, weeping and lamenting because a Nick Jr program was left off the Pluto TV schedule for a day. The actual screaming and sadness went on for a full day. I'm her mother and I had a hard time managing the screaming and inconsolable emotion. Now, imagine I'm a barely trained group home worker making $16 an hour on the last hour of an eight hour shift.  She would be in danger. Is this the slight increase kind of autism than ASA wants us to recognize?

Autism Speaks is running feel good donation ads on major media. They want your money and ask you to develop awareness and acceptance. The money rolls in, but neither awareness or acceptance does anything concrete for people with autism - whether severely affected or not. Last week, we wrote about The Autism Society of America having downplayed the 22% increase in autism as a "slight increase."  Jump in Autism Prevalence A Mere Blip to Autism Society of America Is that common core math?  I've yet to see any version of autism that is “easy”.  This doesn't mean a person on the spectrum, or autist, if they prefer that term, can't have a rich, satisfying life.  Of course they can. But I think we need to acknowledge the tough parts too.  LOUD and clear.

Cathy has today off.   21 years ago, I dressed Bella as a football while Mia and Gianna were Boston College (my alma mater) cheerleaders. Mia and Gianna had been diagnosed with PDD one year prior. Do you remember the early days of diagnosis - before the Internet was ubiquitous? I sure do. Lonely. Frightening. Dark.  More trick than treat.  I'm not sure much has changed for families facing a diagnosis, despite our best efforts.  There is still no real roadmap. Services are luck of location and staffing. There's no St. Jude. No Make a Wish. Not for us.  Many of us found Yahoo groups like Tough Nuts and Old Timers and BioMedHeads, my old group. We knew ARI had answers and we went to conferences.  Despite the Internet, I feel like we are more isolated than ever. Social Media cannot replace face time, even via.... Facetime.

Still, we need to continue to help families, because I fear we are going to see an onslaught of something very dark for children soon.  It might not be autism per se. But something wicked this way comes.

Not the cheeriest Sunday post, but a reminder of why Age of Autism is still here.  Why TACA and NAA are still here. We're needed. We do not leave others behind.  Kim

The Social Security Administration announced the largest COLA - Cost of Living Adjustment - in 40 years yesterday. 5.9%.

Social Security recipients get 5.9% increase, but rising prices will offset the boostSocial Security recipients get 5.9% increase, but rising prices will offset the boost

Social Security recipients will receive an annual cost of living adjustment of 5.9% next year, the largest increase since 1982, the Social Security Administration announced Wednesday. The spike will boost retirees' monthly payments by $92 to an estimated average of $1,657 for 2022."This would be the highest COLA that most beneficiaries living today have ever seen," said Mary Johnson, Social Security and Medicare policy analyst for The Senior Citizens League. But that doesn't mean they'll be able to go on a spending spree. The reason for the hike is because inflation is soaring too.

Supplemental Security Income (SSI) Recipients, like many of our adult children, will now receive a maximum of $841 a month. They are expected to be able to live on this amount - find housing, pay utilities, buy clothing and food, although they may also qualify for the Supplemental Nutrition Assistance Program (SNAP) which is currently $250.00 per month for a single head of household, up from $190 in 2020. If an adult with autism lives in a group home, this amount typically goes to the group home provider. If the adult lives at home with family or in a private community setting, someone has to supplement the SSI - typically Mom and Dad.  In some cases, it's just Mom who provides the safety net (Kim raises her hand.) In other cases, it's Dad, or another family member. No matter, no one can truly live on SSI. 

That's my oldest daughter. She has worn a magenta top and blue jeans during the day for as long as I can remember. At least a decade. It's her choice. And she gets to make some decisions for herself -- like any adult. Until yesterday, when I "helped" her.

Kim: Here are jeans, choose the pair you want today.  Here are socks! Choose the pair you want today. Here are your cool NEW white sneakers! (Also a huge departure and leap forward from black Uggs.) And look! A beautiful pink tie dye shirt!"

Miss M: No. Small shirt.  (That means her usual short sleeve Hanes magenta T shirt.)

Kim: How about big shirt? (That means a sweatshirt, and always solid dark pink.)

Miss M: NO! Small shirt.

Kim starts singing Sesame Street theme song as distraction, changes words "....come and play wearing a new tie dye shirt!"

Mia: NOOOO! Small shirt.

Kim:  OK, Miss M. Here's your small shirt. (She put it on.) Looks great. And here's the BIG SHIRT! (As I begin to pop it over her head.)

I held my breath. UP went her arms into the sleeves!  YESSSSSSS!!!!

Miss M wore the new pink shirt all day!

I'm proud of her.

Tie dye! My oh my!

Big shirt! Big milestone!

Reader, Reader, What Do You See? I see a white shoe worn by Mi! 

Since we are the Age of AUTISM....  This is my daughter Mia. She is 26 years old. Shoes are our Waterloo. She has some foot issues and is very particular about both clothing colors and shoe choices. During the day, she enjoys wearing blue jeans (long, cropped and maybe shorts if I push it) and a pink sweatshirt. Solid. No designs. Magenta or neon pink. In Summer, I can usually encourage her to wear a short sleeve shirt. It takes some coaxing. Her choice for lounging and sleeping is black yoga pants and a solid black T shirt.  I stopped trying to add colors and patterns years ago. Pink and black make Mia happy. I want Mia to be happy. she has so little control in her life - this is one area where she asserts herself. If she were a flight attendant she would have a uniform to wear every day, so what's the difference? I can sneak in a slightly different shade of pink, or even a sweater, instead of sweatshirt. She's open to that.

But shoes are another story.

She wears a black slip on waterproof shoe from September through May. Come June, I have to try to switch her to new, lighter weight shoes.  Usually it's a sandal with velcro straps. But I really wanted to see if she'd wear a lightweight sneaker. Tying is an issue, and I want her to be independent when dressing. I splurge on shoes, I do not skimp. I buy clothes at WalMart and Goodwill to save a buck. But shoes? Nope. Her Aetrex slips ons cost $180! I scoured Marshalls and TJ Maxx for a possible sneaker, and found a pair of Sketchers.  And she's wearing them!!! White sneakers!  For us, this is huge.

How did I do it, you ask? I hid her black shoes. Yup. Took then out of her room and left only the white sneakers and a pair of new pink sandals in her closet. She whined. She complained. "No white shoes! Black shoes!" I felt like the worst mother in the world, as I do often, and certainly at every shoe change season. 

Finally, she put them on. I waited. She did not kick them off right away. A good sign. She stood up. A great sign. She went into the family room and sat down with her row of Kindles and the shoes stayed on!

Yesterday morning, she put them on with a minor fuss. Tomorrow will be easier. And so, we will build our routine. And I will order as many pair as I can online to save so we can continue to wear them next summer too.

I wonder, who will buy Mia shoes, and help her make the switch when I am gone. Do I need to write shoe instructions into my will? These are the small victories we celebrate. And the huge worries that keep us up at night.

Reader, reader, what do you see? I see white shoes worn by Mi.

Last night, my daughter was feeling out of sorts. I could tell, even though she couldn't "tell" me, even with her AAC Touchchat. My daughters and I live in a small, rented, 3 bedroom ranch, built in 1952. We call it,"The Little Blue House," and it is a lovely retro home for us. We're happy here. Safe. The lower level is "finished" and has a makeshift bathroom with an old jetted bathtub that we rarely use.  The drain stopper is broken, there's a rubber plug on a chain to replace it. When the tub is running, it sounds like a Dodge Hemi engine, without the coolness.  I moved us here after my divorce, and had lofty thoughts of creating a "gals pad" downstairs, so my girls could work on independence. The area has a hideous mauve sectional sofa that I bought in a tag sale, a cheap not-so-smart TV, a therapy area, a spare bed, the laundry and what I'd hoped would become their own bathroom. That didn't happen. No matter where we live, they are always in the kitchen near Mom in all their noisy glory.

I decided to run a bath for my daughter.  I gave a small spider a respectful funeral, cleaned the jets and washed out the dust. She was surprised to see a full tub. Happy, I hope. She's always loved the bath and the pool.  I helped her sit down.  Then I sat on the closed toilet, keeping near her while she luxuriated in lavender Epsom salts. I had a rare moment of maudlin sadness. When I was a girl, I always read the local newspaper. Not just for the news, but for a small, one panel cartoon known as "Love is... by Kim." Maybe you remember it? My Mom used to send me clippings in the mail when I moved out of our house at age 21 to start my adult life. My daughter is 20. I thought of  the Love Is series as I sat next to the tub.  A quick Duck Duck Go search brought me right to the cartoon. My beautiful daughter is unlikely to have a boyfriend, lover, or husband to run a bath for her.  She has me. Her tired, old Mom. I tucked her into bed early. She tilted her forehead to me, her version of a kiss.

Love is... running a bath for her.

SEYMOUR CT— Police say an investigation has revealed a Monroe woman “intentionally drove” her vehicle into the Housatonic River in July, leading to her death and killing her son who was a passenger.

The Detective Division has deemed the crash a murder-suicide, Deputy Police Chief Roberto Rinaldi announced in a statement Wednesday that stated the investigation has been completed. Read more CT Post Police: Monroe mom 'intentionally' drove car into Housatonic in murder-suicide involving her son

Hello, readers. I live in Connecticut in the next town over from Monroe. The Housatonic river that runs up 149 miles up into Massachusetts, dotted with shuttered factories in the Housatonic Valley . Factories that used to manufacture the products that made America run back to Colonial times.  On a warm Summer day, powerboats and sailboats dot the water that flows into Long Island Sound in Bridgeport. We are not strangers to catastrophic death here. Sandy Hook School is just 14 miles up the road. The perpetrator of that horror was a boy with Asperger's. He killed his own mother in the spree. Here, Mom, as determined by an investigation, a woman known to so many as a strong advocate for her son with special needs, loved by so many, purposefully drove her vehicle off the road and into the Housatonic. And she turned down assistance.  “The boater made numerous attempts to rescue the occupants of the vehicle,” Rinaldi said. “However, Connie Crowell refused to acknowledge or accept the boater’s assistance and rescue efforts.”

I'm on a large Facebook group for CT Special Needs Families. We have members from all walks of life, whose loved ones have the full array of disabilities, autism included.  There was a tribute thread in which member after member expressed shock, dismay and a deep sympathy for Connie Crowell and her son John.  She was beloved. A great Mom. Strong. Moved heaven and earth for her son. Don't we all? Day in and day out. And then she drowned him. Will we never know what motivated her? Having covered stories other Mothers who murdered their special needs children including Gigi Jordan, Karen McCarron and Dorothy Spourdalakis, and not knowing Connie personally, I assumed my usual role of adding another perspective to the thread. Not sure it was welcome, but I have said this every time a parent has murdered his or her child with special needs.  WE ARE NOT ALLOWED TO KILL OUR CHILDREN.  And then asked if MEDICATIONS played a role.

My comment on Facebook: I’m going to poop in the punch bowl. This is a horror. I understand the depths of despair and the incredible stress we all face. We all do. Still, we don’t get to murder our children. If she had been a distressed Dad and shot himself and his son, would the thoughts be as kind and understanding? My first question is - was she on medications for which the side effect is suicidal ideation? I think that’s really important. Was this a medication driven decision?? She drowned her son. Years ago, Wealthy Gigi Jordan shoved pills into her son w autism until he seized and choked on his vomit at the ritzy Peninsula Hotel. Dr Karen McCarron put a bag over her autistic 3 year old daughter’s head. Dorothy Spourdalakis stabbed her son Alex to death after he had languished in a Chicago hospital for weeks bc of his violent behavior. This beautiful boy drowned at his Mother’s choice. We don’t get to murder our kids. I’m going to cry now.

By late July, Covid lockdown had taken a toll on all of us. We were four and a half months into the worry, the lack of services.  At age 22, John, called Jack,  would have just aged out of any school based services, and no one was taking in new adults into programs. My daughters' day program still has not enrolled adults who aged out last year. We are all exhausted, sometimes, maybe often, to the breaking point.  Now we have had a weather catastrophe that's impacts thousands of families with kids for whom routine and sameness is mother's milk. (Sorry, "people's chest expressed beverage.")

No one will know what darkness overtook Connie Crowell. Or how to prevent the darkness from devouring any of us. May God bless their souls, especially John, who died knowing that his mother killed him. It tears me up inside.

Hey! WE ARE THE KEEPERS OF THE CHEEEESE!  (Apologies to Ren and Stimpy and readers too young to get it.) If you've been around as long as I have, and many of our readers have, you're familiar with the Encyclopedia of American Loons. I'm no Mother Teresa or Stagliano, but I am still a proud American Loon. This was a site cataloguing "anti-vaxxers" like birds, from the ODD-uban Society of folks who used to troll parents of vaccine injured children and had meaning in their lives via their wee blogs that now collect dust like T ball trophies in Mom's paneled basement.

The news story that has circulated about the "anti-vaxxers" who interrupted the LA Dodger Stadium Co-vax administration event has me riled up. First off, I don't trust a word the LA Times writes about anything other than "the ink we use is black."  They have proven over and over again to be solidly anti-anti-vax, pro-Kaiser, pro-pharma and anything but concerned about our children. I don't even recognize California any longer, a state I used to think of as magical and the ne plus ultra of American success.

On Thursday, Robert Kennedy and CHD wrote a post Children’s Health Defense Condemns Protest at Dodger Stadium Vaccination Site, Advocates Safety, Supports Choice.

One commenter at CHD claimed to be responsible for the LA event. His name is Jason Lefkowitz. He was quick to take responsibility.

It seems Mr. Lefkowitz is a President Trump MAGA supporter. Not a problem here. We’re Switzerland. But a quick ask around town turned up nothing about his previous involvement in say SB277, the biggest CA vaccine legislation since the NVICP. His Facebook page shows no kids. (Of course they could just be ugly.) I’m kidding.  Where are his bona fides in the vax choice community? I have nothing against him. I'm sure he is pissed off to be described so badly by the LA Times (welcome to our world, Jason.)

If you read his description of the event, he asked participants to leave their red MAGA hats at home. (What? no red hats? Well, there go the Auntie Vackers of a certain age.)  One can not help but wonder if perhaps the event, and the ensuing kerfuffle was not about protecting anyone from vaccine injury. But we took the heat. And this makes us more “dangerous” to society. it was a protest against "all things Covid." Whatever that means. 

But the media took the chance to slam our work, our worries, our science. Like Kennedy, I have no place in my heart or head for disruptive violence. And I can be quite disruptive.  I'm well trained. I've always said that I am pro-choice. You can call me an American Loon too if you want. 

I looked up Mr. OutofLeftfifeldkowitz on Facebook after reading his comment on the CHD site. His page is sparsely populated with no details about him. He has 1,111 (yes, the angel number) of friends and not one is a mutual with me. We American Loons are a sociable group, we travel in packs, gaggles, pods. It's odd we would not have one mutual friend.

Will the real Auntie Vacker please stand up? Or do we have to cry Uncle?

Last night, I was at the kitchen table, eating a small container of leftover pasta with pesto that I had made for dinner at 3:00pm and left on a warming tray for my helpers to serve for dinner while I worked from 4:00 - 7:30 teaching karate. Let me explain. I teach four nights a week. In order to do so, I have a team of kind, smart, funny, beautiful, caring, logical, intuitive helpers that I am able to hire with a budget through DDS here in Connecticut. They are well paid, well fed (ha  ha) and part of the fabric our our lives. Without them, I would never leave the house. No joke. I trust them with my daughters' psyches, well being, health and their very lives. 

At 8:41pm, my 26 year old with severe autism walked over and stood in front of me.  She usually brushes her teeth and tucks herself into bed when she feels tired. Last night was different. She took my hand.  Which told me she needed something. I walked with her to the bedroom she shares with her sister. I waited. She took my hand and looked at me. Not a word. She speaks with prompting. Short 2 or 3 word sentences. I looked at what she was wearing and knew right away what she needed. She got a pair of black sweatpants with a drawstring waist for Christmas. She needed me to tie a bow in the  dangling strings. I tied them. She got into bed. Content. Now, I know well enough never to buy pants with a drawstring. She wears yoga pants that do NOT need to be tied. She can not tie and frankly, I don't give two poops that she can not tie. I saw that goal on her IEP for 17 years. It's enough. But the person who bought her the sweatpants did not take into account that Mia does not tie, and that the untied strings would bother her. And that someone would need to help her. Me. Her Mom. It was a simple moment that brought the crushing weight of the responsibility I bear and that so  many of our readers bear. I had just read the story below. What of those children without Mom to know what they need. Or worse, monsters wearing the mask of staff, caretakers. But monsters down to their souls:

The story will sicken you. Scare you. More that any of us is already sick and scared. And we are. Sick of being ignored. Scared of dying and leaving our children behind. Because there will always be strings to tie. And monsters in masks. Always.

###

Twenty Chester County Devereux staffers allegedly harmed children — or kept quiet about the abuse — since 2018. The company says it's continuing its reforms.

Happy New Year's Eve. 2020 can't leave soon enough, though to be honest, I am a bit worried that 2021 could bring even more topsy turvies, and that's saying something. What are your plans for tonight? A bit of bubbly? Watch the ball drop in an empty Times Square? As upside down and inside out as this year has been,  my three beautiful daughters with autism have kept me grounded and firmly tethered to so many of our routines. How about you? We've seen the memes and heard the jokes about autism preparing us all for lock down mode. It's true.  Many of us have spent years and years staying home, altering plans, not visiting family, saying "no" to party invitations and trips here or there because of our kids needs. We're used to sacrifice. We live it. It's part of our love for our children, from tot to teen to twenty and beyond.

In our home, the calendar is a very big deal. One of my daughters is all about the day and date and the countdown to the end of the month.  December 31st is the granddaddy of countdowns - month and YEAR! Let's talk screen time. Is this a dream come true for our kids? We might as well look for the bright side.

I'd like to thank the teachers and day programming staff who have worked so hard to keep my daughters' lives somewhat on track. We're lucky to have a snug little house with good food, better desserts and more noise than most could imagine. Someone one said that my daughters bring "joy and chaos," and while I knew it was not a compliment, I get it.  I'll walk into 2021 with my eyes and ears open. Hopeful as ever, watchful and yes, doubtful too.

Happy New Year, friends and AofA family.

Halloween 2000

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The reasons Age of Autism continues is in that 20 year old photo.  My 3 beautiful daughters. Your loved ones too. Halloween 2000 - Mia and Gianna had been diagnosed 361 days prior. (but who's counting diagnoses dates?) Autism has been forgotten in many ways.  Covid has wiped out all conscious thought of other issues - medical and social. And autism has been slowly but steadily whitewashed into a difference in mainstream media.  Autism and vaccine injury makes the "third rail" look like a Please Touch Children's Museum. But while we will always remain true to Mark Blaxill and Dan Olmsted's vision for this site as a way to tell the world that autism is a manmade epidemic, we have always offered so much more in terms of support and topics. And where else can you get a dose of humor to soften the daily blows of life?

It seems autism and vaccine injury is even too risky for fundraising. Not long ago, I sat in a meeting on vaccine safety and choice where autism was excluded from the conversation.  A handful of us stood and said, "Are you kidding?" After all, the “conversation” was begun on our children’s backs. It's  Horsepuckey to use JB Handley’s term.  

Please consider supporting us with a donation. We need to keep SCARING the world with FACTS.  Thank you.Kim

By Kim Rossi

Yesterday, the President of the United States was admitted to Walter Reed Hospital suffering from COVID infection.

I always listen to all news sources.  I was raised as a Massachusetts Independent.  I have voted for Democrats and Republicans alike. In all offices.   I  have Sirius/XM and I can switch from CNN to MSNBC to Fox news in the tap of a finger right on my phone. I'm busy all day - like a bee in a hive. I do not have the luxury of sitting down and watching TV during the day. So I listen.

Most of the reports were factual as we learned that Marine One (made by Sikorsky, just miles from my CT home) was waiting on the White House Lawn to bring the President to Walter Reed Medical Center. Some reports descended into an area I'd call snark. And I know snark.  I've seen oodles of friends on social media giddy with schadenfreude. That's OK. To a point. In the USA, we are allowed to say we love or hate, like or dislike our leaders. That's an American right.

Then I heard something that caught my ear from onE of President Trump's media detractors.   I'm paraphrasing, but she said that now that COVID has hit home, both President Trump and the First Lady, maybe he would take it more seriously.

Isn't that funny, by our Age of Autism standards? How many years have we been shouting the call to action to stem the tide of the autism epidemic.  Every cry falling on deaf media ears. Deaf Presidential ears. Stone deaf ears.

I laughed out loud and thought, "Good luck, Charlie." 

Whatever happens, let's be kind to each other.

Police Car? No.

By Kim Rossi

Every so often, I am reminded of why we publish Age of Autism. When Dan Olmsted and Mark Blaxill had the idea to start a blog around the concept of autism being a man-made epidemic, I had just begun a site called Rescue Post for JB Handley and Generation Rescue. We quickly merged, and I was delighted to join Dan and Mark on their mission to tell the world that autism is an epidemic with a hard, fast beginning, a middle (we're in it) and sadly, it seems, no ending. 

When I look at the lightning fast, over-the-top response to COVID-19, I'm sickened. We HAVE the ability to make drastic changes to stop an epidemic. Even if we hate or disagree vehemently with the changes. The country CAN change its track on a dime. We HAVE the ability to change behavior the moment the population feels or is told to feel afraid.  But no one seems to be afraid of autism. It has been whitewashed into a diagnosis that America now just accepts.

Take a look at the photo above. This is the car of an autism Mom whose teen son lashes out violently while she is driving. Take a good look at it. She used a dog barrier to create a safety cage, like a police car. For. Her. Son.  He beats her when he rages. She showed me her arms. Her back. Black and blue. Scraped. If you saw the photos, you would weep.  You should weep.  She is not alone. That is what I had to tell her. YOU ARE NOT ALONE.  But Lord in heaven, when we are in the throes of autism, behind closed doors, in our homes, our cars, we FEEL ALONE. 

Sometimes our community goes very high level. The work seems to be more about changing the rate at which the planet spins than the daily grind we face.  We focus on major issues that honestly, most of us have very little time to consider, because we are holding on by a thread at home. We've branched out into other health categories and the autism takes a back seat, because we are a third rail. It's painful when that happens. And it seems that the real reason we're together as a community is often forgotten. Many of us have children with autism who are now adults with autism. The behaviors that are tolerable at age five become terrible at 15 and torturous at 25.

This is the Aging of Autism.

This week, I learned of a disheartening situation in Edinburgh, Texas from Evelyn Cano and Debra Liva.  They are two of the fiercest advocates for special needs kids in the entire Southwest. I had the pleasure of meeting them and speaking at their event in the McAllen, TX area twice.

The witches though, are the Edinburgh Consolidated Independent School District, including  school board trustee Edward Pena, Jr who joked that another trustee was "special ed" at their meeting on August 18. The other board members laughed.   The trustees actually laughed instead of calling him out. I damn well hope it was nervous laughter at least. What if he’d made a racial slur, would that have been as amusing?  I was reminded of the Roald Dahl story "The Witches," in which the witches pretend to love children, until they rip off their masks. And show their disdain.  Fish rots from the head. When the board of education thinks special ed students are acceptable targets for jokes, you can bet your red rubber nose, seltzer bottle and punchline that every layer below them knows it.  I am certain the special education teachers and paraprofessionals were wounded when they learned that they too are considered a joke, by virtue of devoting their careers to students like MY THREE DAUGHTERS.  My children did nothing for my district's testing score rating. My daughters did nothing for college acceptance rates. My daughters did nothing for sports accolades. But I can promise you that my daughters made an impact on all of their peers, teachers and paras, all of whom worked so hard for honestly, not a lot of return, except my gratitude.

I HATE that our kids are the butt of jokes. Special education is taking over districts across the nation. Boards that are in such lily white Ivory towers had damn well better come to terms with this. 

We're in a nadir of civility and respect across the nation. Special education has taken a monstrous hit during COVID - as most of our kids have been fed scraps of services instead of what IDEA and their IEPs require.  Sometimes, school boards give special education lip service, having no clue what teaching and parenting a child with special needs entails. Me? I'd like to give Mr. Pena Fat Lip Service for his cruelty. However, that wouldn't do much for civility, would it?



Official Disability Chamber of Commerce RGV press release regarding the ECISD incident from August 18, 2020.

As some of the largest employers in our area, school districts in the RGV still need training and direction with our disability community. We challenge them to be part of a larger discussion and change. We are here to help with sensitivity trainings and disability awareness trainings.
#dccrgvcares #CallToAction #changethenarrative #ableismexists

It’s a warm, Summer Friday night. My two adult daughters just had a rare argument. Over a young man? No. Over the latest outfit? No. Over who will use the car tomorrow? No.

Over a Kindle Fire tablet for Kids, loaded with preschool, Sesame Street, Nick Jr and other content.

It’s a warm, Summer Friday night.

They are in bed in their shared room. 

My adult daughters with autism.

And this is why AofA is still here.

Good night.  Kim

By Kim Rossi, Managing Editor

A male Kindergarten teacher posted the above comment on Facebook. He's so sick of hearing about special needs kids. He
uses the R word. He uses vulgarity.  

I'm going to tread politely on this post, despite my desire to go full steam ahead Kim Blast-you-out-of-the-water Rossi on this teacher from Colorado. I'm not using his name or the name of the district. They are sorting out the issue as I type. I'm either growing up or just plain old. Maybe both.

I commented on the district Facebook when they said they are investigating:

I’m sure this is traumatic for you too especially at this time. Please understand that when parents of kids with special needs send our children to school, we are entrusting you. I have 3 daughters with autism and have spoken at two major conferences in your beautiful state. The teacher is like a rogue police officer. You can be grateful you discovered his rotten core BEFORE he harmed a student. I guess you could say you dodged a bullet. Kim - Managing Editor Age of Autism, formerly Stagliano.

I would like to invite him to my home for a week, a weekend, a day, maybe a half day, if he can tolerate being around my three special, beautiful, kind, funny, teachable, educable in their fashion daughters. I have never had a teacher make me feel like my daughters were anything but valued members of school.  Many years ago, I wrote a post about our High School - and that the included Gianna holding a PBS Kids level library book (upside down!)  in their main corridor on a huge poster.



He wrote: "Do you really think they'll be different after a year of staying home with their parents?"

Maybe we love them exactly as they are, Mr. Kindergarten Cop.  We always want more and better for them, because we are parents, and that's what good parents do, whether their kids are in special ed or gifted and talented programs. Maybe Mom and Dad enjoy their career, and work to put food on the table and having a special needs child home prevents that from happening. Maybe the special needs student loves being with other kids, in a school, surrounded by sights and sounds and adults who mostly are very kind and attentive to their needs.

Covid has been horror for so many families, who have always suffered in silence, but now without the break that school provided, are crying out for answers, help.... school.

Yesterday our Connecticut Governor announced that schools could offer distance learning in addition to opening classrooms. I'm hearing that many teachers are afraid to go back to the classroom, others are eager to get back to their calling. I have been teaching Karate for a month now, in person, and it has worked beautifully. The children follow the instructions without any issues and we have a pretty normal class, with some modifications. I think school can do the same. I went to a tiny Catholic grade school. We never changed rooms. We ate in our classrooms.  We had no bus. We had PE outside or in the auditorium. We walked the hallways in two straight lines. No wait, that was Madeline in Paris.  You get my point, we CAN find a way to get our kids back to school. We just don't need any teachers like the Kindergarten Cop waiting for them.

Kim

Who is old enough to remember this GLORIOUS album of songs from 1972? Every song was about kindness, acceptance,  a cohesive America and sought to shatter stereotypes.  It featured stars like a young Michael Jackson, Alan Alda, Rosey Grier, Carol Channing (try saying that cleaning product commercial fast!) and of course, Marlo Thomas. "That Girl."

What has happened to 1972? I am so disheartened by what I see on social medial.  Each news report isn't an episode, it's a crapisode.  Friendships, alliances, partnerships, shared struggles not just cast aside, but gleefully and publicly denounced as if casting off oozing sores. (Is there a vaccine for that?)

I wonder if AofA is more important than ever (I hope!) or woefully, pathetically anachronistically doomed to the dust bin of censorship and abandonment. I used to be part of a group called "Tough Nuts and Old Timers." Shout out to AnaGrammy! I thought I was an old timer 10 years into my fight for my daughters and my public advocacy. I'm now almost 25 years in. Mia will turn 26 in December. A quarter century of fighting. A quarter century on the sidelines watching life's beautiful milestones go to everyone but.... me.  You.  Us.

What shall we do, friends? How do we even begin to heal?

Kim

A TV report out of Texas reported on a restaurant called the Alamo Biscuit Company that has a "disinfectant arch" that sprays mist onto customers before entrance.  I'm sure it's not the only establishment in the USA with the same idea. From KHOU:

Would you walk through it? San Antonio restaurant installs entryway that will spray you with disinfectant "It's not mandatory," the restaurant owner said. "But we definitely recommended it. It makes our staff feel a little bit better about having people come in here."  KHOU - read more here.

Questioning the push to do something that worries you, that you don't want to do, that might harm YOU to protect others is taking root outside of the vaccine conversation. It will open Americans' eyes (but please -  not while walking under the arch into the "Lorna Doom" biscuit shop). 

Are you willing to walk under a chemical spray to make your server feel safe?  Care to get sprayed at a biscuit shop when you have a bun of your own in the oven? Will you roll your toddler in a stroller or hold the hand of your 90 year old Great Auntie and sashay through the mist to make an employee feel safe? What's in the spray? No mention. The owner suggests you "cover your mouth and eyes." 

It’s likely a bleach solution. (Note to self, ix-nay on the dark clothes when dining at the Alamo Biscuit Company.)  See the attached article:

Is spraying disinfectant in public spaces a good way to fight COVID-19?Is spraying disinfectant in public spaces a good way to fight COVID-19?

Workers wearing protective suits, rubber boots and tanks of disinfectant strapped to their backs have been photographed all over the world hosing down plazas, roads, church steps, airports, vehicles, indoor spaces and even the occasional person.

Some countries, such as Russia, Iran and Indonesia, have even used trucks to spray more areas more quickly. And an industrial complex in Chongqing, China, has built "mist tunnels" to spray employees with disinfectant as they arrive for work. The disinfectant is typically diluted bleach. And officially, it prevents the potential spread of COVID-19, the disease caused by the novel coronavirus.

I am not anti-bleach. I'm no Anti-Cloroxxer! I've used it to clean up many crapisodes. I swim in a chlorinated pool. My white Karate gi sparkles and is never, ever gray. My hair is another story. Still, I want the right to decide whether to be bathed in a solution of ANYTHING. I want informed consent!

What's in a vaccine?  You won't see any chirpy reporters with flowing Farrah curls in sausage casing dresses and winged eyeliner letting you know.  Will you take a vaccine produced at the speed of light with no liability and guaranteed side effects to make those around you feel safe? Asking one group to undergo risk to protect another is the core tenet of today's public health.  When it was "just" vaccines, the majority of Americans had been able to ignore the risk. Most citizens fully vaccinate their children without worry or question, and adult mandates haven't hit us except for certain professions and the flu shot. Now the net is being cast far and wide.  Corona-wide. Risk of disease is poised and ready to pounce on every single surface. Fellow humans are death vectors. Disinfectant sprays will be an issue in school. What is the effect on children with asthma if they breathe the mist? Masks will be an issue. The "anti-vaxxer" tent is growing as more Americans feel impinged upon by demands to participate in what used to be polite society.

Kim

Who remembers Dressy Bessy and Dapper Dan?

By Kim Rossi

I thought we could all use a bit of good news. Yesterday, my daughter put on her pants independently. Most would read that simple sentence and imagine a young Mom proud of her toddler wriggling into a pair of Osh Kosh B'Gosh pants. My daughter is over 18. I'm over the hill.

Dressing is a safety issue.  A beautiful woman who can dress herself is a beautiful woman who is not naked twice a day in front of anyone. 

We've been working on Activities of Daily Living for a long time. Since the COVID shutdown, I've been her teacher on top of everything else. And as challenging as distance learning by ZOOM calls was for her staff and my daughter and me, it forced me to follow a curriculum for her. It taught me how to better teach her. Her teachers helped me gain new skills. We've had success in part because I was not rushing to get her sisters ready for their day program at the same time, not making lunches, not packing backpacks and not watching the clock for transportation. Our mornings have been laid back, at least by our standards. I was able to take as much time as needed to help my daughter motor plan dressing.  Next time you put on your pants, count all the steps. It's more than you think.

We'll keep working until we master bluejeans. Hint: the jeans are stiff enough that they stay "open" so that she can insert her leg. I found that if I sit her on a low  bench, she can reach her feet better than if she is sitting on her bed. There's less reaching forward. Less motor planning. So many pieces and parts. This is huge progress for her.

Pants. On. By herself. Osh Kosh... oh my Gosh!

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

Poof.

Teachers. Fired.

Therapists. Fired.

Staff. Fired.

Students. Fired.

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

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

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

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

STILL I RISE - By Maya Angelou

By Kim Rossi

I'm going to make this short and bitter not sweet. WE CAN NOT KILL OUR CHILDREN.

EVER.

PERIOD.

FULL STOP.

Florida mom facing murder charge after autistic son, 9, found dead, police say

This weekend a Florida mother named Patricia Ripley concocted a fakakta "believe it or not" story about her son's drowning that had more holes than a wool sweater at a moth convention. She drowned him. Not once. Twice.  Twice? Yes. Ripley apparently tried to drown her son an hour earlier at a different canal but nearby residents heard yelling and rescued him. Then, Fernandez Rundle said, Ripley drove her son to another canal.  Read that again. She tried to drown him. People heard yelling and rescued him.

If Alejandro had been able to speak he'd have screamed, "She's trying to kill me! Help me!"  But no, he could not speak. Surely Ripley invented a story of how he fell in and she was unable to swim or some such nonsense. Otherwise, the rescuers would have CALLED THE POLICE!! They should have anyway.  I wonder what they are thinking now, knowing they could have saved him after all.

Alejandro Ripley is dead. Autism. Unable to speak. Unable to defend himself from his monster of a mother. Patricia Ripley  is not a victim. She's Susan Smith with PECS.

He's not going to be in "a better place." That's the bullshit  used by Dr. Karen McCarron who put a plastic bag over her 3 year old's head and held her struggling body until limp and wealthy Manhattan socialite Gigi Jordan who stuffed her boy full of pills in a posh Manhattan hotel and watched him seize and foam at the mouth until dead.  

Ripley blamed two black men - of course, the most stupid, racist, half assed accusation a white woman could imagine - accused them of running her off the road, demanding drugs, then kidnapping her son when she had none. And I'm the tooth fairy.

We're all stressed and often overwhelmed, especially those of us in full COVID lockdown like we are here in the NorthEast. You want to talk about stress. Oh let's do, shall we?  No school. No day programs. We know from stress.  ALL of us.  My stress is through the roof with 3.  Your stress could be worse with 1. This ISN'T a contest. Take your child to a hospital and walk away. Drop him at the police station. Hell, leave him alone in the Sesame Street aisle in WalMart where an employee will figure it out and help him.

Jesus, God in heaven. How do you drown your child? Twice.

WE CAN NOT KILL OUR CHILDREN.

EVER.

PERIOD.

FULL STOP.

By Kim Rossi

Mayor encourages constituents to 'socially shame' people not wearing masks in Rhode Island Jack Perry The Providence Journal

Everything we have ever taught our children about bullying is WRONG. We should teach our kids that life is 100% situational based on the agenda.  Black can be as white as snow. Fire can be water. Freedom can be slavery. Shame your neighbor? Turn them in? Celebrate their loss of income, the collapse of their business to save others?  I saw an article about ankle bracelets in Kentucky for family members of COVID positive relatives to track if they leave the house. Kentucky orders quarantine-breakers to wear ankle monitors

We are in a 21st century version of The Industrial Revolution when life changed dramatically and entire industries were rendered obsolete by machines. We've seen technology do the same to a lesser degree since the 1980s, mostly displacing humans and cassettes. But this COVID iteration is different. It lacks the hope of a better future that has always been at the core of the American dream and backbone.

The United States of America once competed in the race to space.  Today? We're in a forced march to something I do not recognize. The Manhattan Project, for better and certainly for worse, created a bomb that made the nation feel strong and protected. Invincible even, for a time. Today? COVID has turned us into traitors to our friends and neighbors, cowering at home in fear, compliant, meek, scared.

By whom? For whom?

CUI BONO?

Yesterday morning, I brought out Gianna's lunchbox to package something I needed to keep cool to bring across town.  Gianna bebopped into the kitchen and stopped short. "My lunchbox!!" She looked happily surprised.

You know what she thought, right?

"I'm going back to my day program! My life!"

It broke my heart to tell her "No, G, no Kennedy Center today."

She launched into self-talk to calm herself. "It's OK, No Kennedy Center today. Maybe Kennedy Center will open in May."

Kennedy Center probably will not open in May. And G will not be carrying her lunch box anytime soon.

What do you miss? Whom do you miss? What about your loved one with autism? We have some rough situations going on in homes. We have families whose children are in residential school or group homes and unable to see family. There is a family where Mom, Dad and the teen with autism have COVID. Dad passed away. Alone. Mom is home sick.  And the teen with autism is in seclusion in a hospital with severe, severe behaviors for which he is being chemically restrained.  Alone.

Gianna uses Nick Jr and that calendar you see on the counter to calm herself and feel safe. Me?  I use the Siriusly Sinatra channel on Sirius Satellite radio. The old standards of Sinatra, Martin, Bennett, Lee, Horne, Satchmo and Darrin remind me of the safety of childhood and my parents listening to the record albums on the large, console stereo "hi-fi." This song came on and I thought it was appropriate in a way wholly unintended by the writer.

People who need people,
Are the luckiest people in the world
We're children, needing other children
And yet letting a grown-up pride
Hide all the need inside
Acting more like children than children

Listen, even if you aren't an old fogey like me.

Stay well. Stay safe.

Kim

Kim in 1971, in a costume her Grandmother made for Easter

By Kim Rossi

I'm sitting here writing to all of you on a Friday night, the 5th Friday that we have been on Staycation. Or as I like to call it, The prison known as Covidatraz. And Al Capone is NOT here to do my shirts, my cooking, my cleaning or any of our laundry. These past 36 days have been pretty good here at our little blue house.

Great book, about a boy with a sister with autism, before anyone knew what autism was.

I am so proud of my girls, who have given up everything familiar outside of the house. No school. No day program. No helpers coming in and taking them to the mall, the park, anywhere. Just Mom. All day. Every day.

I know that many of my friends are struggling mightily with new or returning behaviors in their children, young through adult, with autism. We've seen regression too. Fortunately, it has been mostly benign. Mia has been listening to songs I used to play in our very first minivan back in 1997, when I would drive her and Gianna to and from daycare.  Sesame Street songs. It's nice to hear her sing the lyrics from when she was a child. I think it comforts her. I hope so. Gianna has been a trooper - although she is relying on her calendar more than ever. Each morning, she wakes around 4:30am, and I can hear her open the door to our lower level, (don't be impressed, we have a darling 1950 3 bedroom ranch, but the lower level is fully finished) go down the stairs, creak, creak (did I mention 1950) creak and there she puts an "X" through the date on her whiteboard calendar. Every day, this is the first thing she does. I know that it helps ground her. Heck, I have to ask her the date ten times a day! Isabella, has been distance learning with school. A challenge to say the least, but it gives her a look at familiar faces, if only to signal her that the world still exists.  She has her dime store beads at her side at all times.

I expect this house arrest to continue at least through May. I worry about forced vaccination when we're out of this. I worry about having to show proof of COVID to participate in life. But I know that tomorrow's worries are for tomorrow.  Not today. This is Easter weekend. Passover too. I'm baking (I have a 55 poound bag of Italian flour - yes, 55 pounds) and I'm not afraid to use it! Cooking and baking are my comforts. The scents of my own childhood.

A warm kitchen means a safe home. And that has been my priority for my daughters. Safety. Security. A gentle life with joy exactly where and how they need it. Sesame Street songs. A white board calendar. Shiny beads. And fresh baked goods.

Tell me how you are doing in our comments. I really want to know. I'm thinking of doing some Facebook live broadcasts from our little blue house. The most important thing I need is to know that our crew, our squad, all of you, are OK, getting by, no matter where you are.

Oh, on Monday I have a funny surprise for everyone. It's silly. But I think you'll like it.

Stay well. Stay safe. Stay sane.

Love,

Kim

The article excerpt below my rant commentary is from the CT Mirror.

I live in Connecticut and am home with my three daughters with autism.  While we're "OK" for the most part, this is not easy. Mostly for them, but I won't fib, it's not easy for me either.  The day program my older daughters has re-opened for a limited number of individuals. I declined to send them for a couple of  reasons. First off, we really are self-quarantining. They have not left the house except for a couple of rides in the car. I have been to the drugstore and the grocery store for a fly-by grab of what I need, in an out in under 15 minutes.  Second, I think the limited day program space should be used by families with elderly parents, or adults who have severe and dangerous behaviors to give the caregivers a break. My girls sleep well, so by 9:30pm, my house is quiet. My break is from then until about 4:30am when Gianna wakes up and starts pacing. I don't have to get up for good, but I check on her and never really go back to sleep. Still, that's more than many families have, and I'm grateful.

The good news is that Connecticut brought back our plastic grocery bags at check out! The Governor made stores start charging $.10 a piece many months ago.  What a pain in the ass dragging out your groceries in a reusable bag.  I always said those bags were gross - used and reused. Groceries can be icky. Strawberries and other fruits can leak. Chicken or beef can drip even if double wrapped.  Reusable bags seemed a recipe for food borne illness, pantry months and worse. And I missed them dearly - not sure about your house, but I line my bathroom trashcan with plastic grocery store bags. They're back at every check out. And free! YAY COVID!

I worry about every family who reads us. I worry about the families with kids with autism who can't stand us because we talk about vaccines.  I worry about the people who comment about crisis actors - BTW, I am deleting those comments, we have enough people calling us names and accusing us of nonsense, I won't go down the crisis actor/false flag rabbit hole.  I hope you understand and continue to read and comment otherwise.

I don't trust most of what I see on TV or read, and I sure don't think COVID-19 us here by some random accident. I don't know how the heck we ended up in this global lock down, or how it will end.  I'm not paid to think big picture. Way above my grade, yanno? 

I know I can not afford to get sick. And I sure as hell can't die. My daughters need me. My former other half is in our rear view mirror (objects had better not be closer than they appear) 'nuf said about that ancient history.

The article below mentions paying parents as caregivers during this time. If I got paid even $15 an hour, I work a full 168 hours a week and that would be $2520, or $131,000 a year.  Nice work, if you can get it.

I guess I'm asking everyone to hang in there - do your best. Let's see what each week brings.  Love to everyone. Kim

During COVID-19, disabled adults lack services and supports

For years, Rachael Cohen, a 27-year-old with autism, has been obsessed with keeping her personal calendar up to date.

She knows that on Wednesdays she goes to a stable to help with the horses, while on the other weekdays she goes to a day program where she learns life skills and goes out shopping or to a playground. Also on her calendar was a music program at the Jewish Community Center and the occasional trip to Mystic Aquarium.

Aaaaand it's April 1, 2020.

Here we are, Autism Action month. Will anyone pay attention or care? The window dressing and blue lighting of years past seem quaint. COVID-19 has taken over our day to day life in an extreme way.   I've always thought the post below by Cathy Jameson set the right tone for each April, which is why I re-run it from time to time. It last ran in 2017. Image that. Three years have passed by like a flash. My Gianna was still in school, months away from her 21st birthday. Mia was a newcomer to day programming. Bella was a sweet sixteen year old.  I was still Kim Stagliano. Our community is hurting badly. And there's no realistic end in sight to this era of self-isolation, no school, limited work, routines built over time and with blood, sweat and tears shattered like fragile glass. Gianna keeps a calendar on our kitchen island. Each day has the name of someone with whom she'll be interacting. These are the people who help fill her day with meaningful moments. She just wrote out the 30 days of April.

MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM

Love to all our readers.  Kim

###

Aaaaaaaaaaaaaaaand it's 2017. "Y'all ready for this?" I want to do a reverse Punxatawny Phil and crawl INTO my den for the month. Kim

###

Aaaaand it's 2015.

Managing Editor's Note: We ran this post from Cathy Jameson last April -  2013.   I wish it were out of date.  366 days later and it still works...

By Cathy Jameson

Let me embrace thee, sour adversity, for wise men say it is the wisest course.
--Shakespeare

It’s that time of year.  We’ve flipped a calendar page to a new month:  the month of April.  The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode.  From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me.  While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me. 

In one day, the blue machine usually goes into high gear for Autism Awareness Month, convincing Americans that autism itself is something to celebrate. EVERYONE with autism is someONE to celebrate. My gorgeous daughters have been warriors during this shut down, adapting like I never imagined they could.

I teach martial arts. In classes, we tell our students that a black belt is a white belt who never quits. We are always white belts, learning every day, an empty cup, waiting to be filled. And boy, are we all finding out how true that is right now.

My girls are teachers.

Senseis.

They are black belts in navigating a world that is not available to them.  Many years ago, I earned my blue belt in martial arts. Now I have not one, but two black belts, one in Karate and the second in Kobudo - weapons.

Little did I know that I actually donned a blue belt the day my daughters were diagnosed. And so did all of you.

How are you managing at home, my friends? We are finding a lovely place of calm, peace, and respect, which is at the core of all martial arts. I am respecting the girls needs. And it works.

Love, Kim

By Kim Rossi

There's a word - bloviating. It's when someone speaks out of their blow hole, if you get my drift. Like most of you, I've been on social media off and on and on and on for days. Everyone's an expert. No one is an expert.

We are a unique community. We are the autism community. And as splintered as we have been over the years, no one really understands our plight like our fellow autism parents.  Many years ago, I coined the word "crapisode" in a Huffington Post piece that went, pardon the phrase, viral. Today, I am coviating.

Routine is a basic human need. Sure, we pretend to dream of a life with no cares, no work, just laze about all day, on a beach, a mountain, a lake, wherever.  In reality, total lack of structure is not so great.  Routine is extra important to our kids, to adults with ASD, our readers who themselves are on the spectrum.

I feel like Americans were asked to retire en masse in March. What you have is what you have. $1200 from the Federal Government? A bandaid on a hanging limb. We heard last night that we are to remain in self-imposed quarantine until the end of April. That's 31 days from today.

My daughter's autism school furloughed most of their staff as of this weekend. My older daughters' day program provider is trying to cobble together hours for their staff by placing them in group homes for a shift here, a shift there. I have a fantastic team that provides me with respite hours. I can't use them. They aren't getting paid.

So many of us believe precious little of what we hear from CDC, the White House (no matter who is in office), state politicians. We're being buffeted like corks in the ocean.

I'm worried about domestic violence across the country increasing, not just in homes with special needs children or the elderly. I teach self-defense. Abuse runs across every social strata. Shelters are closed. Where is a person to go to seek help today?

One of my girls has a cavity that needs filling. Her appointment at Bridgeport Hospital (autism means FULL sedation in a hospital setting) has been postponed indefinitely. She might lose that tooth, which KILLS me, a dentist's daughter.  My daughter's medical practice sent a text that they will be offering telemedicine for the time being. If she breaks a bone, I'll be sure to press #6.

By Kim Rossi

Next month is Autism Awareness month. Quarantine? COVID-19? I've been Autismtined from regular ed and most of regular "life" for more than 23 years, how about you?   CDC in the USA and WHO globally have utterly failed citizens from California to Calcutta.  Loss of income these days? Most of us dropped to one income earner in the family. Some literally - as in divorce.  The corporate ladder for us is a Little Tykes slide, climb, climb, slide back down to the bottom, try again.

Our expenses are through the roof, not covered, not covered, not covered. Out of pocket. Out of pocket. Out of pocket.

We search for Barney videocassettes from 1997 because our adult kids can hit play and rewind on the Sony Trinitron TV with the built in VCR that we troll eBay for monthly so as to have a spare in the basement.

We drive 3 row seat vehicles so that our kids can be socially distanced while we drive.  We've been punched in the back of the head enough times to have learned that a small car is a recipe for disaster.

We lose our breath every time our child bolts, wanders, is out of our sight even in our own homes. Water crashes through the ceiling as a toilet overflows. Bedding strewn all over the room as a rage unfolds. Our respirator? A blessed night's rest, for those who get that gift. An hour of respite for a cup of coffee. A camp for a week.

We keep that minivan long after our babies grow up because we can't afford to repair the car door of every single car we park next to when we bring out our kids. Bang! Bang! Ding! Ding!  Scribble another note to leave on the windshield, "So sorry.. my son..." That sliding door is also impossible to open at 70 miles per hour on the highway. That's how we take care of our heart rate.

We don't bother to repaint this room or that hallway because there is no Kevlar enforced paint that can withstand the punches and head bangs. The drywall has been approved for a Purple Heart.

Worry about an invisible virus? We worry about our adult children with their invisible disability like Asperger's every time they leave our sight. Will they hit a social wall, lose friends, get in trouble with the police, keep a job, maintain their mental health amid their challenges.

COVID19, meet AUTISM33.

Born right here in the United States of America. Almost 90 years ago. And we're still quarantined.

Kim Rossi is Managing Editor for Age of Autism.

By Kim Rossi

My three daughters are home from school and their day program until at least early April. All indications so far are that the April date given is simply to keep parents from grabbing pitchforks and torches and storming the admin buildings.  As a whole, AofA autism parents are the strongest, most dedicated, capable, unselfish humans I know. Oh dear, we're humans. Many of us aren't the young thirty somethings we were when we started our jaunt into the rabbit hole. Or forty somethings. We're in our fifites or older. Being a 24/7 caregiver takes a steep toll. We have to try to get our rest, keep our heart rates below "kaboom" and help our children, may of whom are adults themselves, process this dramatic change in their routine.

All in all, my girls are rather easy going. They circle the house like three beautiful planets, each in her own orbit in a separate galaxy from her sisters. A separate universe from her "peers."  One is more independent than her sisters, who come to me several times each hour to fix hair, snap a photo of a nursery school video, pull up socks, detangle beads and other rituals that are important to them. Important to them and so, important to me. Still, when you have three with full autism, the odds are stacked against you. It's kind of like bringing a knife to a gunfight. I am in motion from the moment my feet hit the floor. I stop at around 9:30 after the girls go to bed. I'm very lucky they are good sleepers, I don't take that for granted.

I am blessed to have budgets for staffing through our CT Department of Disability Services. I have a kick ass team of providers whom I trust and adore.  But we're in quarantine - and so I can't have them here right now.  They depend on their "side job" here for income. We're all struggling.

I have one daughter still in school here in Fairfield County, Connecticut. She attends a special education placement outside of district. I received a letter from her school stating that if our district closes, she will be unable to attend school, even if the school remains open. This would be for at least 14 days. So far, our district has only cancelled after school activities, but not classes. Other local districts and many colleges have shut down.

The City of Bridgeport, next door, says it will not close because its student population does not have ready access to technology to learn at home, unlike Westport, a very wealthy town just miles from Bridgeport. Yesterday, our district sent home a questionnaire to fill out regarding what technology is available at home including access to Internet and a computer.  We have a computer, but my daughter can not use it to accomplish her IEP goals.

How will special education services be fulfilled if school closes? Will there be compensatory hours? A longer summer program? I have so many questions. Down time is DEAD TIME for us. And probably for you too. And in two weeks, behaviors can escalate while skills diminish.

Kim

By Kim Rossi

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

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

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

Merry Christmas. God bless us. Every one.

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

Note: We are excerpting the article that follows below my intro from the Center for Family Involvement blog. For those of us with older children, adult children, this rings so profoundly true.   Kim

We love our children to the end of the universe and back, the moon is for parents of typicals. But we face exhaustion and burnout.  In my household, I care for three daughters with autism. They require 24/7 attention.  They are happy, well fed, reasonably well dressed and thriving.  I am fortunate to have budgets to staff respite hours. Very fortunate. A dear friend in our community lost her husband 3 months ago. She is now raising her severely vaccine injured daughter alone.  Many Dads are raising their special needs sons and daughters without Mom's help. Others of us are divorced, like me.  Joint custody and co-guardian are merely words on paper that might as well be Charmin - one ply.  The irony in my situation is that the less the girls' father does for them (there is no financial support and he sees them every three weeks by his choosing) the more I'm prone to burnout.And that would not be good for my daughters.

What's your story? How do you think you will cope as you age? I'm always working on ideas. Autism Ages is still up and running, with a slow start. We're too busy living today, aren't we?

###

November 22, 2019
By Erin Croyle

What exactly is a caregiver?

We assume that parent/caregiver is interchangeable. One of the same. It’s not.

A caregiver, by definition, is a family member or paid helper who REGULARLY looks after a child or a person who is sick, elderly, or disabled. All parents serve as a caregiver from time to time. But that is not the same as the “primary caregiver” role so many of us took on the moment we became a mom or dad.

Why does this matter? 

 Acknowledging how different and challenging the parent/caregiver role is important because it can consume us without us realizing it. We love our children so deeply that the lengths we go to ensure their comfort become our new normal. But our norm is not the norm. That’s why recognizing and honoring caregivers is so important. We love our children unconditionally and will do anything for them, part of that needs to be loving ourselves too.

How is parenting different from caregiving?

Parents need babysitters. Caregivers need respite.

Parents take their kids to well visits and sick visits a couple times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments.

Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team.

Parents make dinner. Caregivers feed their children, by mouth, by tube, whatever is needed.

Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they’ve also helped modify. Dinner is a daily crapshoot.

Parents go to parent teacher conferences. Caregivers go to those conferences and also IEP meetings, behavior plan meetings, care plan meetings, person-centered planning meetings, Medicaid eligibility meetings. So many meetings.

Parents take their kids to soccer practice and drink coffee on the sidelines. Caregivers search for a sport or program that is suitable, fill out piles of paperwork, meet with the people running the program, go over accommodations needed, and are on high alert monitoring their loved one, often jumping in to help.

Parents sign their kids up for after school clubs. Caregivers contact clubs to see if supports are available. They usually aren’t. So they request assistance, offer to help change the system, or offer support themselves. Caregivers sometimes give up or don’t bother asking, because it’s not worth the effort.

Read more at Center for Family Involvement Blog

Like many of our adult children with regressive, vacine induced autism, my oldest daughter is, was and I suspect, always will be a Sesame Street girl. Her very first word was "Ober" for Grover monster. She carried a Grover plush that grew to resemble the Velveteen Rabbit, loved so hard he was threadbare but still in her eyes "furry and lovable." I used to mimic his voice for her to make her laugh. And laugh she did, with bright blue eyes focused on me and a smile that was brighter than the Street Lamp with the iconic sign on it.

Last year, the girls and I moved into our own little house. During the move, I had to make a decision. In the cellar, I had bagged and hidden all of my daughter's Sesame Street plush dolls. This included the giant Grover doll her father and I bought in 1996 in a toy shop in Peddlar's Village, in Lahaska, Pennsylvania. Gianna had just been born, and we took Mia out for a big sister dinner while my Mom watched Miss G at home. I remember thinking that Grover was so expensive. Little did I know he'd be a mainstay in our lives for more than 20 years. We got our money's worth and then some. We also had a giant Big Bird, purchased at Sea World in Cleveland in 1999. Another splurge for my girls.

I threw away the bag of plush. Goodbye Grovers, goodbye Big Bird, Ernie, Bert and Elmo. All of them. I threw them away.

I know that in order to move my kids forward, sometimes I have to be tough and - move them forward. My daughter now looks at old Sesame Street CD-ROM games regularly on YouTube. Where there's a will, there's a way.

My brother was born in 1970. We watched this 1974 episode of Sesame Street together, and I've seen it with my girls many times on Sesame Street Classics. Take a look at John John who appears at the end. He grew up. He has a career. He'll have a family. Maybe he'll watch Sesame Street on HBO with his own children.  But probably not forever.  Kim

Cafe Mom ran a post about about women, #MeToo sisters who should be supporting one another, women who probably promote breastfeeding and are pro-choice are creating Vaxist or Vaxogynist memes that mock, disregard and bully in the old fashioned not snowflake sense of the words children who are vaccine injured. In a tiny bright moment, when I went to Facebook to seek the photo - it had a content shield over it. I am very happy about that. It deserve to have a warning. It's disgusting.

On what planet does dressing up as a Mom with whom you disagree become en vogue? Do stay at homes dress as working Moms to mock them? Do nursing Moms dress with babies drinking poison from a filthy bottle to stick a finger in the eye of formula moms?  Do pro-choice women dress as patients with  bloody coat hangers dangling out of their netherparts for fun?  Ha Ha Halloween!

WHY IS IT OK TO PORTRAY OUR KIDS AS DEAD?  Many ARE dead. They wander. They drown. They choke and gasp and seize to death.

When I was in third grade, I wore an adorable costume for Halloween - I was an Indian! That's what I called it. Today, we no longer use the term Indian, that's called progress. And a child wearing my get up might not be allowed in school parties. Even trick or treating might lead to raised eyebrows. Did I mean harm? Of course not. Was I mocking the Wampanoag tribe that was in my area? Of course not. Still. It would be seen as offensive today, and it was probably offensive to those with Native blood even back in the 1970s. So we no longer dress this way.

But it's not only OK, it's comedic fodder to make fun of vaccine choice, vaccine injury (they don't believe it exists) and families. Dead child! Skelebaby!!!

Here's a clip of the article. Feel free to pop over to CAfe Mom to comment. I've written for them in the past. I like a lot of their columns, even though standard parenting was never my life - because of vaccine injury.

And my name is Kim. Not Karen.

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Woman Dresses Up as 'Anti-Vax Mom' for Halloween & People Have Strong Feelings

The image is, in a word, shocking. But then again, it's meant to be.

Many people left comments saying Dayss' attempt at humor went too far -- even if the message is important.

"Disgusting and heartless," wrote one commenter. "It’s NEVER okay to joke about anyone losing a child."

"This is just ugly," wrote another.

One woman called the costume "vile," adding, "Way to go putting your complete lack of class on display for the world. Your mama must be so proud."

By Kim Rossi

Well, at least she broke the "I finally get to dress like a trashy, sexy woman" tradition for Halloween.... Instead, she dressed like a vicious bigot.

Welcome to social media in 2019. Where grown women can make fun of vaccine injured children and their families by dressing up as a "baby" with measles. I don't even know if this is carzylla herself in the photo. She shared it, so it's public. Complete with a proud American beer brand in one hand. I'm sure Coors will be calling any day to sign this lovely lass for an endorsement. Never. My guess? She's in the medical field.

MMR has injured many of our children. MMR has been at the center of the autism/vaccine debate for decades. MMR has been reworked, its data fudged, its elements changed, its very existence sued by its very manufacturers own scientists.  Measles has been the TrojanHorse used to ram through laws denying exemptions , banning healthy kids from school and just you watch - much more is coming.

So I say to carzylla, whoever and where ever she is - How do you feel making fun of children, parents and families who have been through the kind of hell you could never imagine unless you lived it. Live it. EVERY. SINGLE. DAY. Like we do.
Here's a photo of a vaccine injured adult riddled with seizures and autism and PANDAS that I hope will make her laugh and smile and golly jiminy biminy boop maybe even pee her Depends.

Not amusing enough for you, you nasty woman? Try this one for a double giggle. Brothers (2 of 5 siblings with autism) and their diaper supply.

Credit Anthony Karen

Still not tickled pink? We invite you to read an AofA story we posted years ago about Josh Edwards, in the UK. Take a look at his body. Yuck it up, babe!  I Am Josh. A Boy After His MMR.