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.

###

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.

Below is Del Bigtree's report on the questioning of Mark Zuckerberg by Rep. Bill Posey (R) of Florida. Zuckerberg is clear that the goal is to stop conversation, debate, education and opinion on vaccination. There will be a default position on Facebook that vaccines are always safe and effective for every single human on the planet. Injury will be ignored and denied. Death will be ignored and denied. The utter destruction of pediatric wellness will be ignored and denied. It's not a coincidence that Zuckerberg's wife is a young pediatrician whose maiden name rhymes with Pan, as in Richard Pan.

Both Zuckerberg and his wife are unable and/or unwillingly to process the concept of vaccine injury. Of freedom to choose a medical procedure. Of the right to say "NO." America is moving toward the equivalent of rape by vaccination, and I do not say that to be glib. When the government demands you inject yourself and your children with a product for which the consumer/patient bears 100% of the risk while there is NO LIABILITY to either the manufacturer or the doctor, nurse, random CVS tech who administers it as it generates profit that would make Croesius blush, I think it's fair to call that assault with a chemical weapon.

As social media lurches toward full censorship and the pushing of agendas many of us can not fathom, Age of Autism and other sites by brave people like Del Bigtree, Robert Kennedy Jr and others become safe haven for American freedom.  Read us. Share our posts. Donate to us. We are NOT going away. Dan would never allow it. Nor will I. Kim

###

From The High Wire with Del Bigtree.

Florida Congressman Bill Posey grilled Facebook CEO Mark Zuckerburg at a recent House Financial Services hearing.

Posey stated, “I support vaccinations of children and adults, but I also support open and frank communication about the risks of vaccination,” Posey told Zuckerberg. “You testified that you believe in giving people a voice. Is Facebook able to assure us it will support users’ fair and open discussions and communications about the risks as well as the benefits of vaccinations?”

Zuckerberg said anti-vaccination users on Facebook have the same rights to expression as others, and their views aren’t censored. However, he said, they aren’t publicized, either.

“If someone wants to post anti-vaccinationtent or they want to join a group where people are discussing that, we don’t stop them from doing that,” said Zuckerberg. “But […] we don’t go out of our way to make sure our group recommendation systems show people or encourage people to join those groups. We discourage that.”

Read the full report at The High Wire here.

My reponse to this Tweet sums up my feelings of disgust. The hatred and bullying and praise by others means we are sanctioned targets. Be careful. 

Yesterday I was at the dump, excuse me, transfer station, in my town.  We have private curbside pick up in my town, and when I got divorced, trash removal was important to me, but pricey, so I dumped the service and drive twice weekly to dispose of my garbage. The transfer station has a large bay, like a garage, in which there is a pit. You heave household trash into the pit. It's cathartic. My boxed, preserved House of Bianchi wedding gown made a particularly nice "clunk" when it hit the bottom two years ago.

Parked next to me, a man took a long, fluorescent tube out of his fuel efficient car. I thought, "No way, he's not going to...." Sure enough, he marched into the bay to heave it into the pit. I ran next to him, "You can't do that! The tube is loaded with mercury! It's toxic! There's a special drop off for CF and tube lights!!!" 

"There is? I didn't know that."

CRASH. Explode. Mercury vapor is now filling the pit and about to waft up to us.

I wish I knew who he is. I'd send him a copy of Trace Amounts, the story of how a broken tube light on a construction site launched Eric Gladen into years of disability including most of the signs of autism. 

Imagine how many of these bulbs are in in our trash. Especially the CFL's that pretend to be real lightbulbs instead of toxic bombs.  But measles. Right?

Kim

I popped into the Stop and Shop today to pick up a bottle of Kombucha. I'm hooked on the cidery, vinegary drink, which I add to seltzer, since it's pricey stuff. Speaking of pricey stuff? How about a "cost free flu shot" at the pharmacy?  As I was checking myself out (the unpaid labor kind, not "hey there hottie" in the mirror kind) I was surprised by a large display of Reese's Cups on the checkout machine.  Stop and Shop stopped hiring cashiers years ago, and trended to more and more of the self-check out machines.  My guess is that they are losing a TON of impulse purchases because we now wait in line and then march up the the next available check out machine without browsing the National Enquirer headlines or contemplating a pack of Doublemint Gum or a box of Tic Tacs. The scanners and machines are convenient only to a point. Though it is kind of cool to pretend that the scanner is a phaser set to stun. Oh, back to my point.

There was this big bucket of KING SIZE Reese's cups perched precariously on the machine. And below it? Stop and Shop now includes a charity and you have to OPT OUT of donating at every purchase. YES is on top to round up your change. NO is on the bottom. You often have to look to even see WHAT is the darn charity.  I checked this one, "Cure Children's Cancer." While you stare at the Reese's cups,  you are supposed to figure out what is this charity?  So I looked closely. And it's Memorial Sloan Kettering Hospital System.  Every food within 15 paces of the cash registers and check out machines is toxic and contributes to cancer: from my beloved Entenmann's treats, to potato chips, to candy of all sorts.  Most of every American Grocery store is one big cancer causing mess.  Cancer machine behemoth Memorial Sloan Kettering is asking for donations. Do they treat patients for free?

Then, on the way out of the store (and in) you get to read this giant sign at the pharmacy. The line for Rx drugs is long.  "Save time!" Oh my goodness. Get your "Cost Free" flu shot! Just look at all the vaccines you can get at the grocery store in America. We are a nation of sickness. Food that kills. Medicine whose side effects are worse than the ills they treat.

It's time..... to Stop. And shop somewhere else.  Kim

By Kim Rossi, who lives 15 miles from Sandy Hook (Newtown) Connecticut

Watch this one minute video from The Sandy Hook Promise, a non-profit launched in Newtown, CT whose founders include family  members of those staff and students murdered by 20 year old Adam Lanza in December 14, 2012, who was on the autism spectrum and brutally dysfunctional.

By Kim Rossi

The assassination of President John F. Kennedy
The moon walk
If you play the record backward, it says "Paul is dead."
You will die if you drink Coca Cola while eating Pop Rocks.
Step on a crack. Break your mother's back.
Mikey killed himself.
Cigarettes cause cancer.
There's a "thing" called crisis actors who are faking mass shootings.
The world is flat.
There is no climate change.
September 11 was an inside job.
Jeffrey Epstein committed suicide.
Vaccines cause autism.

Who decides what information should be called a conspiracy theory worthy of the Weekly World News versus hard hitting reporting worthy of the front page of the New York Times? 

The information age has given way to the over-information age. Social media created an opportunity to influence our thinking in ways the old fashioned news, whether on television or in print, could never have imagined.  The thought of waiting a week for the next issue of Time or Newsweek is quaint, as is turning on ABC, NBC, or CBS each night at 6:30pm for the evening news. But - are we being inundated by or isolated from what is really happening in our world?  I feel less aware than ever. I turn on the morning cable news networks and hear nothing but arguments from Trump supporter or Trump detractors. I don't bother to listen. Cable "news" is opinion and bias and snarky judgemental politics for most of the day. Sometimes, I turn on BBC radio to get a glimpse of what's happening around the world.

When Jeffrey Epstein's death was announced,  America had a unique, almost unheard of moment of unity where we all blurted out, "Suicide?????" The evidence against Epstein was piled high. His past conviction and white glove treatment generated worthy doubt.  The manner of his crime and its reach into the echelons of politics and high society so abhorrent it had to be true.  The suicide so convenient for those for whom the canary might have sung a loud tune. Questioning his death was a logical response.  Even Howard Stern waxed apologetic for becoming a conspiracy theorist by questioning Epstein's death.  I don't understand the leap to overusing the term conspiracy. Why aren't we allowed to think something we hear isn't true without being painted as kooks? Dangerous kooks even.

By Kim Rossi

When Sesame Street launched in 1969, I was a 5 year old first grader whose teacher dragged the TV on the tall trolley into our classroom so we could all watch this groundbreaking new program. From that day on, I adored Sesame Street for 5 decades. Grover was Mia's first word.

I did not stop watching, or adoring, Sesame Street until they introduced Julia, a character with autism that never, ever struck the right chord with  me. While appreciating the effort of introducing a character with autism, the fact that it was a female Muppet never sat right, since autism affects boys far more than girls. Sesame Street has been criticized over the decades for its lack of female characters. The female Muppets like Prairie Dawn and Rosita were ancillary and not main characters. Happy, dancing Zoe became Elmo's friend and was a more visible female presence. Abby Cadabby, a relative newcomer, added little to the program in my opinion. She made magic mistakes and often her Mom had to fix them for her. Hardly a strong role model for girls.  And Julia? Introduced in May of 2017, Julia seemed forced, her  gender chosen to fill a gap. 

Julia's role was to "destigmatize" autism and reduce isolation among autistic children. A fine goal. Except.....

By Kim Rossi, formerly Stagliano

This charming comment in the photo was in our queue yesterday morning. "Adam" aka Robert-Macc, considers me an abusive parent. And a bitch. And he would like me to die. Except I have a get out of death free pass! Ha! I am no Mother Teresa NOR am I Kim Stagliano any longer! LOL!

If this is what Asperger's is for Adam/Robert, I think I know who has the death sentence already. What a sin. I feel sorry for him. Angry. Who knows how old. Maybe alone at 3:11am and seeking the comfort of unbridled rage as a keyboard cowboy.

The people with Asperger's that I know are nothing like this. NOTHING.

Adam/Robert, if you read this. I hope you had a decent day, with less rage and hate. And I wish you well.

Kim ROSSI

Note: Thank you to Laura for her letter below. I'll have more to say about the removal of my own entries on HuffPo soon.  I cut my teeth as a public writer on Huffington Post. Huffington Post cut me off.  Stay tuned.  We can't be shut down. We won't be shut down. They can lock us out. They can't shut us up.   KIM

By Laura Hayes

Dear Lydia Polgreen,

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

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

It seems you did not bother to investigate whether or not the CDC is influenced by, to the point of accepting money from, pharmaceutical companies. If you had, you would have learned that the CDC accepts large sums of money from those who will profit when the CDC endorses and recommends their products. In layman’s terms, we call that a huge, undeniable, unacceptable conflict of interest.

Additionally, it appears that you neglected to read even one vaccine package insert. If you had, you would have noticed that pharmaceutical companies are permitted by the FDA to do their own safety and efficacy testing for their vaccine products, without external, independent verification of their findings. You would have learned that when these companies test the vaccine products they hope to greatly profit from: inert placebos are not used for controls; control groups are not always used; studies are as short as 4 days in duration; only healthy individuals are selected as test subjects; the vaccine-targeted age group is not necessarily the age group tested; many test subjects are harmed, some killed, by the vaccines being tested, both during the testing period, and after; and, many injuries and deaths are reported post-marketing (which reportedly reflect a mere 1-10% of actual injuries and deaths), but are rarely, if ever, followed up on by the vaccine makers, those who administer the vaccines, the FDA, the CDC, the NIH, or HHS. You would hopefully also have noted that vaccine-making pharmaceutical companies do not test their vaccine products for carcinogenic effects, mutagenic effects, or impairment of fertility…and that the FDA permits such egregious omissions.

By Kim Rossi

Last night, I was looking at Facebook when a story scrolled down my wall that caught... well, I should really use a different phrase. If you can imagine the horror, a mobility challenged woman died after a metal straw impaled her eye and went into her brain. She died. From a straw injury.  I know the topic isn't autism. But disabilities are a part of our lives. Many of our kids have oral motor planning issues, and straws are part of our lives. Here's the story:

Elena Struthers-Gardner, 60, was carrying a mason-jar style drinking glass with a screw-top lid in her kitchen in Poole, Dorset, when she collapsed.

Today a coroner said metal drinking straws should never be used with a lid that fixes them in place, and “great care should be taken” while using them.

The eco-friendly straws have increased in popularity as a replacement for single-use plastic straws as part of the fight against plastic waste.

The straw damaged Mrs Struthers-Gardner's brain stem, which controls breathing, with the tip of the implement coming to a rest against the back of her skull. Read more at Telegraph UK here.

What a horror for this poor woman! Yesterday, during a replay of a Howard Stern show (you know I'm a fan, even when I disagree with him) and he and Robin were talking about the banning of plastic straws. Robin brought up that many people with disabilities need bendy straws.

My girls like bendy straws. Maybe yours do too.  If you've ever had a baby or surgery, you know that even a slight tug on your abdomen can be agony when in recovery, and bendy straws are a Godsend.   So now, with the removal of plastic straws to save birds or fish or something, actual human beings, earthlings, fellow citizens, have to find another way to fulfill the basic biological need to drink. Water. Wine. Beer. Iced coffee. Sweet tea. Whatever.  Isn't it funny how the nation latches on to righteous outrage for some things - straws!  But not for others.

Are we an anti-straw nation? 

Seems Ms. McCain is compelled to preach. "Vaccinating your kids is an easy choice." Really? How lovely to be to so sure of one's self and an entire industry.  This was my response to Ms McCain. I see no need to stoop to their level. But boy, it's tempting. I have a rapier tongue - but I'm using my martial arts training to keep my cool. "I shall not use my skill outside the dojo except in the most extreme circumstances," is one of our codes of conduct. I won't take the bait she's chumming into the water. I will share  facts and my personal experience.

We'd like to wish our readers who are Dads, StepDads, Grandfathers and other versions of a Father a very happy Father's Day 2019.

A Father protects his family. Feeds them. Houses them. Makes sure they have the basics and if able, luxuries. He knows his children as well as (but maybe differently than) their mother. He  puts his children above himself. 

I'm describing my own father, who died in 2017 at age 92.

Toward the end of his life, he'd take me aside, and tell me the details of his life insurance, the house, all the ways he would look out for my Mom (who is 17 years his junior) when he died.  He used to slip me a $20, even when he was no longer earning an income.  I can hear him when I was a teenager, "Put a dime in your shoe, in case you need to call." A quaint memory from another time, before technology. Several months, ago, I was training in our dojo (karate school) and I found a dime in the most impossible place on the floor. "Hi, Dad!"

He knew my life was difficult. (None of us have easy, lives, from this I know!) But not just because of the girls' autism. He knew. And he'd always ask me, "Kimbo, are you OK?"

Dad, I'm better than OK. Your girls and your Kimbo are thriving. We miss you. On this Father's Day, 2019.

From the Classic Sunday children's show Davey & Goliath: Davey Has the Measles

Hello, dear readers. Cat has the day 0ff for not one but two graduations in her family - 8th grade and high school! Cat has five children, and  you know them all thanks to her beautiful, sharing posts each Sunday. Ronan's siblings take such good care of him. The Jameson family is truly blessed. Cathy is a devout Catholic, who brings her faith to her writing in an open way that anyone, no matter their religion can relate to and appreciate.

Then there's Kim. 

I was on Twitter last week, and threw myself into the morass of vaccine Tweets. The true believers (think vats of Kook Aid and a space trip to the Mother Ship) are often so nasty to us, mothers of vaccine injured children. They are dismissive, cruel and taunting. We're the only group that people can beat on with impunity and the grace of the media.

First I tweeted this: Pharma loves me this I know. For my doctor tells me so.

Then I was struck by what could only have been divine intervention and channeled our version of the Child's bedtime prayer.

Now My child is on my lap. MMR, polio and DTaP. If his brain should catch on fire. The doctor will scoff and call me a liar.

World without end. Amen.

Prayer is meant to be shared. Share away.

Kim XOX

Please join us at  AutismAges.org - a forum based site to discuss the issues of autism and aging. If school is this tough on children, it's hard to think about what our not so cute full grown adult children will face as adults. We need to get busy now. Please join the site and start talking! 

By Kim Rossi

My God, everything is upside down and wrong today. Have you read about the piece of poop teacher in Indiana who gave a boy - preverbal with autism - like my Bella - a trophy for Most Annoying Male?  This "teacher"CHOSE HIS OR HER JOB (why don't any articles tell us his or her name???) and still found a student "annoying" and actually made an award for him. The cruelty is shocking. This is like pouring a bucket of blood on Carrie after making her Prom Queen - a hideous, evil joke.  I can only imagine the treatment the boy received during the school year - from the teacher and OTHERS. This kind of personality doesn't go unnoticed or unsupported by others. Bus drivers, aides, teachers, paras - turning violent and nasty on disabled children because they can not handle the job they took is unacceptable. QUIT. Go work at Target. Go work at the local dump. GET OUT OF THE SCHOOLS.

GARY, Ind. – An Indiana father says he was “blindsided” after a teacher gave his 11-year-old son, who has autism, an award for “most annoying male.”

“We just weren’t expecting it,” dad Rick Castejon told The Times of Northwest Indiana. “As a principal or teacher, you should never let this happen to any student.”

Castejon said a special education teacher at Bailly Preparatory Academy in Gary handed out the awards in May during an annual end-of-year ceremony and luncheon for fifth-graders. Read more at FOX 59.

I'm an upbeat woman, despite the serious challenges in my life and my daughters' lives.  But stories like this shake my faith. People are often surprised when I say, "We are happy!"My girls are safe and smiling in the life that I have been able to create and secure for them. And I am gloriously content and proud of myself for being able to make ends meet (stretched like Yoga masters!) and that I can take care of myself and my girls 100% on my own. Well, to be exact, around 331 days and nights a year.  I did not choose the autism life. But my girls have autism. I chose to be a single parent. And for those of you who are also single, divorced, widowed or widowered, you know that it's a never ending responsibility and it's tough. But we are tougher.  Sure, sometimes my girls frustrate me, worry me, exhaust me and dare I say "annoy" me - like EVERY child. Ours with autism do it with a particular skill, and for a very long time, (like forever for most of us.) I can't get fired. I can't fade from the girls' lives. I gave them life. And it's up to me to protect their lives. And when we send our kids to school, we expect the teachers to protect and keep our kids from harm as well. We do not expect them to publicly shame then, which lets all of us know that they treat our kids far worse when no one is is looking.

Join us at a new site called AutismAges.org - a forum based site to discuss the issues of autism and aging. If school is this tough on children, it's hard to think about what our not so cute full grown adult children will face as adults. We need to get busy now. Please join the site and start talking!

Note: "Thoughts and prayers" go out to the families of the dead. That's what we're supposed to say right?   Join us at AutismAges.org to start talking about these impossible issues related to autism and adulthood.  
By Kim Rossi

My Lord, the irony of this shooting to come on April, 30, the last day of Autism Acceptance month.

We have, in the past, tried to soften the possibility that these murderers (don't look to me for a sugar-coating) may be be autistic.  I went on CBS radio to tell listeners that Adam Lanza, was an aberration, not the norm.  I wrote a HuffPo post about Cho, the man who shot and killed students at Virginia Tech. You can call me angry. Just don't call him autistic. Tuesday's murders at UNC have no such shield from me. Trystan Terrell's father wrote a letter that soke of  his son's autism.  If the blog and the letter are accurate, Terrell has a medical autism diagnosis. Terrell's sister Chloe mentioned her father's description in a letter he sent her.  Take a look  below. 

From Heavy.com: Terrell’s father, Craig, wrote in a blog post in May 2016 that his son was diagnosed as being autistic at three years old. Craig Terrell said that when a nurse in a neurological doctor’s office asked him, “Has anyone ever mentioned the word autism to you?… Our lives got more complicated.” He went on to discuss the difficulty of researching autism online as the family was living in a rural part of Texas with only dial-up AOL internet access. Craig Terrell added that the nurse told him that there would be no follow-up appointment but that family just needed research autism.

no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.
no follow-up appointment but that family just needed research autism.

This is exactly what I faced when Mia and Gianna were diagnosed at one of America's TOP pediatric neurology programs run by Dr. Max Wiznitzer in Cleveland Ohio.   I was told to make sure I got an IEP at school and NOTHING MORE. I know young parents who go to Yale's famous autism clinic and hear exactly the same thing 20 years after I got the news. Autism.

Measles got you scared? It's a game of peekaboo compared to the monster in the closet of a generation of young, healthy autistic males with autism who need so much more than we have been able to offer. An adulthood for which they are not prepared despite parental love, care, and harder work than most can imagine. 

Most of us do our level best to support our kids.  And as a community, we rally around each other - loathe to cast a shadow on autism as being a violent or dangerous diagnosis. Except when.... it is. What a painful sentence to type. More painful for our families who live it every day. We do not know what the Terrell family faced with their son, brother. Perhaps that will come to light as the case unfolds. No matter the outcome, if guilty, Trystan is not a monster, despite the monstrous act. Autism is no excuse, but it sure is a complex reason to act out.

My friends with sons at every spot on the spectrum are insane with trying to teach them self-protective skills like how to survive a police encounter, a date, something he might think is a date. There are so many pitfalls.  So many social rejections.  So much testosterone with no outlet. No hugs. No kisses. NO BANGING - there, I said it as bluntly as I can. Young men need SEX. Crave sex. Where does the testosterone go for those who have no or few opportunities?  These are the questions that are out there. Why did Trystan turn to violence? What more could his family have possibly done for him? Maybe nothing. How about his high school. The college. His peers.  Anyone. We can not do it alone.

The world has been told that autism is such a gift, a remarkable talent that there ARE NO SUPPORTS FOR FAMILIES. If your son or daughter can "pass" - you get no funding -  and once school ends? You fall off a cliff. 

Here in Connecticut, if you have autism and an IQ of 69, you get traditional, old fashioned funding for mental retardation. If you have autism and your IQ is 70 or over you may get approved for the autism waiver. There are 109 waiver spots in Connecticut.  109 in the entire state. All taken. With a wait list of 10 years as of now.

Every campaign to "Learn the signs" is a failure. EVERY. SINGLE. ONE. "Learn how to PREVENT AND TREAT" is the only thing that matters. 

I'm sorry for the Terrell family. For a Dad who was told to go forth and seek your own info. For a sister whose brother is forever connected to the horror of American male school shooters. For the families of the dead and injured.

For all of us.

Today is one of my daughter Gianna's favorite days. She has 24 such days a year. The last day of the month, and the first day of the month.  December 31 and January 1 are the biggest, of course. G is my calendar girl. She uses the dates and numbers to add structure and sense to her world. I admire her for it even if I have to listen to her tell me the date and how many dates are left in the month eleventy times a day! She made up a song for herself  to the tune of the REM Song End of The World as We Know It.  As you can guess, she sings, "It's the end of the month as we know it, and I feel fine." It's endearing really.

We made it through yet another blue autism month. I don't know if I've finally just tuned out most of the events or if the media is tiring of the blue haze of April for Autism. I didn't see as much as I have in the past.  This month has been focused on fear of measles. And even with all the attention to vaccine mandates, vaccination, anti-vaccination, I haven't heard "autism" too much at all. Interesting.

How about you? Did you attend any events or buy anything special?  How did you honor your loved one with autism?

I turned down making a donation to Autism Speaks at Marshall's.  And a Hilton hotel in which I stayed at JFK had an Autism Awareness banner and blue light bulbs on the tables. I've cut cable, so I don't watch over the air or cable channels as a rule. Perhaps I missed PSA announcements with handsome little boys standing in cul de sacs wearing Ralph Lauren togs.

And you know what?

I feel fine.

Kim

It's Saturday night chez RossStag (that's my clever way of saying Rossi Stagliano - moi and my 3 daughters). We're listening to music. Getting PJs on. Tidying up the kitchen. (Again.) And enjoying a really nice weekend together. Meanwhile, in Poway, CA, another place of worship is reeling from a shooting, during Passover. There was a deadly shooting in Sri Lanka days ago on Easter Sunday. And a few moments ago, I read this article about Dylan Roof, the boy who shot and killed nine worshipers in a Charleston church. He has been sentenced to death. He did not defend himself. He denied any psychological defense. He "sidelined" his lawyers. He wants to die. How is it that a young man like Dylan is so lacking in spark that his own life means nothing? He is committing suicide by mass murder. We're twenty years out from the Columbine shootings. What has happened to The American Boy?

The guilt of Mr. Roof, who coolly confessed to the killings and then justified them without remorse in a jailhouse manifesto, was never in serious doubt during the first phase of the proceedings in December. And by the time jurors began their sentencing deliberations on Tuesday, it seemed inevitable that they would lean toward death, not only because of the heinous nature of the crimes but because Mr. Roof, 22, insisted on denying any psychological incapacity, called no witnesses, presented no evidence in his defense and mostly sidelined his court-appointed lawyers.  NYT.