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.
By Kim Rossi
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.
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.
It’s January 1994; I’m 13 months old. Off to the
doctor for my MMR! Tonight I have a high fever.
I don’t feel so well in the morning, with severe
diarrhea leaking through my clothes and onto
my bedding. My stool is bright yellow, runny,
and then like oxtail soup. Can you imagine?
This went on for 5 days, and then I stopped “going” so
much . . . Mum says “constipated.” I used to poop
every day before the MMR, sometimes twice a day.
I’m so sorry, Mum, I don’t know what is
happening. I am miserable and upset.
I’m sorry that I scream and cry and nobody can figure out why.
Please don’t pick me up, please don’t cuddle me - I can’t stand it!
I don’t like being touched anymore.
I am Josh. I am obsessed with light switches,
climbing on chairs and tables to get to them,
turning the light on and off. It is the same with door
handles and opening and closing doors. I engage
in repetitive behavior. I hate eye contact and ignore
the cameras that I used to “ham it up” for.
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.
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?
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.
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:
Metal straws should be used with caution, a coroner has said, after a retired jockey died when she fell onto one which impaled her eye and caused a traumatic brain injury.
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.
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.
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.
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.
There's a war on women. It's not #MeToo. It's the pharma/politician/public health machine lead by people like Dr. Paul Offit. Our old friend. (You know the saying.) Read the two paragraphs from a Philadelphia Inquirer article that ran yesterday. It's behind a paywall, I won't bother with the URL. Now read the version I fictionalized below it.
It's open season on women. Where does Offit get off claiming we ALL have "just enough education...." Hey, Paul. My fellow Tufts Jumbo - is your alma mater good enough for me? I went to Tufts and then transferred to Boston College. My Dad was a DMD from Tufts. My Sister attended as did my Uncle and a few cousins. How about that slouch Ginger Taylor. Johns Hopkins! Hell, that's one step below Wassamatta U, right Paul?
The discrimination is blatant. WE ARE THE NEW N WORD. Make no mistake. And by demonizing us and making us look stupid, it's a GREEN LIGHT TO HARM US. Start training. Pay attention. We're approaching real danger.
If you’re against vaccinating your child, there’s a good chance you’re a college-educated white woman making decent money. The rebel forces in America’s latest culture war — the so-called anti-vaxxers — are often described as middle- and upper-class women who breast-feed their children, shop at Whole Foods, endlessly scour the web for vaccine-related conversation, and believe that their thinking supersedes that of doctors. Typically their families earn more than $75,000 a year.
“Frankly, these Caucasian, suburban, educated parents believe they can Google the word vaccine and get as much information as anybody,” said Paul Offit, a professor of pediatrics and director of the Vaccine Education Center at Children’s Hospital of Philadelphia.“These people are educated just well enough to make terrible decisions for their children.”
If you’re against teaching your child about police brutality, there’s a good chance you’re a high school drop out, black woman making very little money. The rebel forces in America’s latest culture war — the so-called police brutality preachers — are often described as lower and lower middle class women who eat Popeye's Fried Chicken, shop at WalMart, endlessly scour the TV for police brutality conversation, and believe that their thinking supersedes that of Police Chiefs across the country. Typically their families earn less than $35,000 a year.
“Frankly, these Black, urban, poorly educated parents believe they can Google the word brutality and get as much information as anybody. “These people are educated so badly as to make terrible decisions for their children.”
I wrote this post in 2012, 7 years ago. I never did find out what happened to Bella's leg. Every post we've ever written about April and World Autism Day stands the test of time, and is "ever-green." And black. And blue.
By Kim Rossi (written as Stagliano
Today is April 2nd. Some are celebrating Autism Awareness Day. I am not. To me, today is like Good Friday and Yom Kippur - somber days of reflection.
Above is a photo of my daughter's leg. She has autism. A week ago, I put her into the bathtub, and while undressing her - was visually assaulted by these two angry red scratches - parallel, as you can see.
I touched them. She winced. She did not say to me, "Mama, I hurt myself doing such and such." I held back tears and examined her wounds. Did she scrape against something sharp under the kitchen table? I've been feeling under surfaces ever since, trying to find the nails or screws that bit into her tender flesh.
I have no idea how my child was so badly hurt. She was at home all day. She can not speak to tell me. My daughter has autism.
Take a look at her leg. The scratches. The black.
Kim Stagliano is Managing Editor of Age of Autism. Her new novel, House of Cards; A Kat Cavicchio romantic suspense is on SALE for $.99 as an ebook and is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.
April is a month of important religious holidays for Jews and Christians. Passover marks the solemn night when parents marked their doors with red blood to save their sons from God's plague upon Egyptian first born sons. Easter mark's the crucifixion and resurrection of Jesus Christ for Christians. Judas was paid 30 piece of silver to betray his friend. Many of us feel terribly betrayed by politicians, medical personnel, schools, programs. Our children have so many serious needs and few are met.
April has 30 days. March came in like a lion and snapped and clawed at medical choice. It did not leave like a lamb.
April first is day of silly practical jokes. I have a friend who put her son's cereal in the freezer overnight so that the spoon was locked into the milk - much to his sleepy eyed surprise. I feel a bit like like the spoon frozen in the milk. Not exactly "Cheerio..." Let's get on with the month with a vow to continue to look out for one another. If you want to honor your loved one on the spectrum tomorrow on World Autism Day - by all means. We encourage you to do so. Many of us will not acknowledge the day.
I try to stay upbeat in my writing, my thinking. And so, in keeping with the holiday theme, my mind travels far across the world to India. I have many Hindu friends here in my town and they just celebrated a beautiful festival called "Holi." It is a festival of love, hope and features bright colors painted everywhere, including the face!
I will choose to enjoy all of the colors of the rainbow this month, not just blue. To celebrate the love we have for our children, some of whom are adults, like my three and whose needs are growing faster than the crocus can pop its green stem from the ground on a warm day.
Dear, Gianna. Here it is, 20 years later. I love you as much as I did when you were a 2 year old little girl. I love you just as you are. I do not love your autism. I never have. I never will. I love that you smile and laugh and bring everyone around you joy. I do not love that you are in a day program instead of working in a career you love after college. I love that you look out for your sisters who also have autism. I love that you are kind. I love that you remember what's on the calendar every single day when I can't remember what day it is. I do not love that you will never have a true Valentine of your own with whom to share love, sex and a life. I love that you bowled 120 this week with your friends. I love that you recited Good Night Moon with your sister as the two of you lay in your room before going to sleep. I love that she helped you remember the words and you giggled. I love that you are OK with visiting your dad four nights a month instead of having an intact family. I'll love you forever. I'll like you for always. As long as I'm living, my Gianna you'll be.
Hi, friends. I saw this news report on Facebook yesterday. Police: Mother Strangled, Abused 6-Year-Old Son With Autism After He Defecated In Pants Child abuse is nothing new. Parents of typical children beat them, harm them even kill them out of anger for childhood "sins" like wetting or soiling their pants. The comments on Facebook were appropriately and perhaps especially harsh toward this Mom, whose comments seemed anything but remorseful, according to the report. Many call for harming the Mom. "Just give me 5 minutes with her!" I get it. Child abuse in any form is anathema to the majority of us.
The boy in this story is just six years old. How will Mom cope when he is 16? 26? The stresses are too much for some parents to bear. Many just don't have the support systems, pressure relief valves, money, respite, training, or simple parental patience, which for autism is about 1000X what's needed for a typical child. That said, wealthy parents with the world at their fingertips have murdered their autistic sons and daughters as the exhaustion, despair and frustration of parenting a child on the spectrum strikes every socioeconomic group.
I have 64 cumulative years of autism parenting under my belt. I still struggle with temper and patience when the chaos takes over. One of my children was not BM trained until almost 12 years of age. Another used to play in toilet water to satisfy a perseveration, even when the toilet had not been flushed. I coined the term, "crapisode." That awful mess made my head explode every time. My first reaction was never sympathy. My second reaction was never to harm. Sometimes I just shut the bathroom door with her in it and walked away to catch my breath. That's me. Or was me 12 years ago. Today I have many more support systems than I did a decade ago, despite choosing to divorce. Like most of you readers, even with support, as the sole caretaker, I get tired.
I hope this Mom gets help. For herself first. So that she can begin to parent her son in an appropriate way.
By Kim Rossi
Hello friends, and Happy New Year. I haven't written too much about my daughters since my Memoir All I Can Handle I'm No Mother Teresa debuted 8 years ago. They have grown into young women, adults over the age of 18. Can you imagine that?
My middle daughter Gianna is the most talkative of the three. She helps sort and make sense of her world via the calendar. Each Friday is "the last day!" -- of the week. Each 30th or 31st is "the last day!" -- of the month. And today, December 31st is the greatest of all last days to her.
In 2005, when we moved as an intact family from Ohio to Massachusetts to live with my parents after a long stint of unemployment, my Dad and Gianna formed a special bond. It was difficult to move into my childhood bedroom with a husband. Strange. I felt as if I was in an MTV "real weird world" special. The upside was that the kids got to really know their grandparents and my folks, who always were able to willing to meet the girls were they are - not where they wished they were - loved having us there.
One of my Dad's silly lessons with Gianna has stuck. They would look at the calendar together and my Dad would say, "Where did Tuesday go, Gianna?" She would laugh. And he'd turn his thumb to the ground and say, "Down the drain!" And then they would laugh together. He did this for a reason. Gianna was afraid of the bathtub drain. And the shower drain. So by making her beloved calendar go "down the drain," my Dad helped ease that fear for her. I'm not sure he even knew he was providing a form of therapy for her. He did so by instinct. That's love.
Note: No one has ever figured out the ailment of the dolly on the island of misfit toys, until now. She was a toy from the future, a doll with measles, cast out of society.
By Kim Rossi
Let's take a trip back to Christmas, 1962. A little girl named Michele had a Christmas wish for Santa. Michele wanted to play Mommy. Mommies used to take care of sick children. It was part of their job description. Sniffles and sneezes, spotty rashes and wheezes. That was childhood, after all. Get sick, build an immune system, grow up. Michele got a wonderful new doll from Santa that year. Her name was Hedda.
Interesting. Yesterday, commenter Shelly Tzorfas asked "what if autism were contagious?," and I remembered a post I wrote in 2008 for Huffington Post. This was back when HuffPo had contributing writers who controlled their own work. I was able to log into the blog backstage with a password and publish my work. There was no pay, but the platform was really important for me to build my "brand" and prepare to launch my memoir. And I was passionate (still am) about telling my family's story in order to help others. Even when it earned me ridicule and online scorn instead of a paycheck.
After one of their sales to another media company, HuffPo stopped allowing writers to publish their own work. I could still go into the site, write and post my work, but I had to wait for a staff member to approve and publish the post. After a while, they stopped publishing my posts at all. I wasn't too happy about that. I had a huge following and my work generated comments and controversy - the lifeblood of a blog.
Today, HuffPo has removed their contributor platform entirely. When I went to find my old post, I found this disclaimer, "This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email."
And so, without further ado, here is my old, possibly abusive post. Wink!
What if Autism Were Contagious?
Tell me why our doctors and national institutions and even charities have abandoned children with autism, instead of setting out to conquer this neurological crippler.
Two controversies are swirling in the autism world. The first is over the safety of vaccines as they may relate to the cause/onset of this life altering disorder. The recent airing of ABC's Eli Stone episode about a woman who sued a pharmaceutical company (and won) on behalf of her autistic son brought the vaccine Hatfields and McCoy's roaring into the headlines, even as the American Academy of Pediatricians demanded the program's censorship. (You can read about that HERE in David Kirby's Huffington Post piece.) The second is the whether or not there is any epidemic at all, brought up by Dr. Nancy Minshew, who runs the Center for Excellence in Autism Research at Pitt.
The media reports almost daily that drug companies have misreported clinical trial results, marketed ineffective drugs, and lied to doctors and consumers alike about their products' efficacy and safety. And yet we're expected to believe that the dozens of vaccines administered to infants and toddlers are 100% safe, 100% of the time, for 100% of children, and have absolutely no connection to autism. Man, that's harder to swallow than one of those horse sized prenatal vitamins the OB's dole out along with that mercury laden flu shot.
By Kim Rossi (formerly Stagliano)
Yo Ho Ho and a vial of poison, dead children TELL NO TALES! But their parents do. Shrek and Pirates of the Caribbean screenwriter Terry Rossio Tweeted the LOGICAL thought that I have had on many occasions and is now having to walk the media plank. By coincidence, I watched his Pirates movie on Saturday night.
He compared calling a person an anti-vaxxer to calling a person the N word. (Insert horror scream here.)
He's right. There's no way around it. Anti-vaxxer is an EPITHET - a word used to denigrate. I would have Tweeted "N word" and not spelled the word out. But I'm a middle aged white woman in Connecticut. This in no way compares the history of treatment of African Americans to the treatment of the vaccine safety community. Not for a second. I and I believe Mr. Rossio, are talking about the USAGE of the word - the intent by which it is written on the page. The intent in the media and by politicians and public health officials is to brand, literally and figuratively, anyone who speaks about vaccination safety concerns a heretic.
The reports will focus on the word he used, not the fact that a successful Hollywood screenwriter sees through the draconian crackdown on ANYONE who questions vaccine safety. I'll assume he lives in California where vaccine rights are being stomped upon by the like of Senator King Pan. The reporter glibly writes off vax safety concerns as the result of "talking too long to Jenny McCarthy." Ah a new twist on an old talking point for the Pharmedia.
Decide for yourself what you think about this. But remember, young men go to WAR and kill when they perceive their neighbors, brothers and sisters as ENEMIES. It's the seed warlords plant to foment rage and hatred. And I see it happening right here in America for those of us who choose not to follow the CDC schedule for our children and who speak out loudly. Calls for punishment. A restaurant that will not serve the undervaccinated. A gym that wants to see... "pediatric papers please." This is a very real trend to violence.
You may not know the name Terry Rossio, but you definitely know his work. He’s one of Hollywood’s most prolific screenwriters, his name often buried in large writer clumps on many-tentacled blockbusters like Shrek, the Pirates of the Caribbean films, Disney’s original Aladdin, Déjà Vu, Antz, Small Soldiers, The Legend of Zorro, Little Monsters, and so on in that fashion. He’s also, apparently, what they call “anti-vax,” spreading the gospel that vaccinating kids is bad because of some stuff he read on Google or because he talked too long to Jenny McCarthy.
Happy Thanksgiving from all of us at Age of Autism.
My girls have been watching the Charlie Brown Thanksgiving special for several weeks now. It's not the best of the Charlie Brown bunch, that's for sure. But I take away a message that resonates for me as a divorced Mom to three adult women with autism (yes, Miss B turned 18 in September.)
Sometimes a meal of buttered toast, pretzel sticks, popcorn, jelly beans, and an ice cream sundae is far more delicious than an organic turkey with all the trimmings. You all know I would erase the girls' autism in a heartbeat if I could, peeling back the layers of anxiety, apraxia, perseveration, to reveal their bright, loving selves. At the same time, I have to say thank you to the path that helped me find Dan Olmsted. Mark Blaxill. JB Handley and so many others. And all of our contributing editors, my readers and the warrior parents who became my tribe.
I have very little of the "things" one would expect of a woman my age, with my education and location, etc. And yet, I've never felt more grateful and satisfied with my life than I do right now. Funny, isn't it?
I feel a bit like Woodstock, flying upside down and bumping my beak here and there as I land. And then laughing. If I had a pumpkin patch in my backyard, I hope you know, it would be VERY sincere.
Enjoy your day. With love and gratitude.
Hi, friends. Kim here. Our November matching gift program is well underway - and a huge thank you to everyone who has donated.
We rarely go full PBS/Eyes of an angel look a hungry puppy on you when it's time to ask for support. This year feels different - I'm worried. Worried about the tone and tenor of so many media outlets where "anti-vaxxers" is becoming code word for "people it's OK to bully and possibly harm." Social media is cracking down on posts about medical freedom and safety.
Blogs were out paced by the rapid response of "like" and "retweet" on social media. But I think we are more important than ever.
The fact that we discuss vaccine safety hurts our ability to raise funds, despite being a non-profit that does damn good work - and that's no lie. Every organization that has attempted it has had its hands slapped, mouth taped, wrists tied. If we disappear, Dan's legacy of a gathering place dedicated to exposing life inside the autism epidemic was for not. We can not disappear. I can't fathom that.
This community raised $25,000 in 4 days in a GoFundMe following the loss of a home in the California fires for a family we all know and appreciate. I hope you'll show your appreciation for AofA. And you can always send comments, suggestions and ideas to me at KimRossi1111@gmail.com!
Stay tuned for an announcement in 2019 as well. AofA is going to add another "product," that I think you will love.
This month, all tax-deductible donations go toward a generous anonymous patron's $5,000 matching gift. You can use our DONATE button online through Bank of America Merchant Services - safe and secure. Or send a check to Autism Age, PO Box 110546, Trumbull, CT 06611. Thank you. Kim
Yesterday, we posted a meme about older "kids" with autism and Halloween. My girls have not dressed up for several years. Mia is now 23, Gianna is 22 and Miss B just turned 18. I am a ripe 50 never-you-mind. This year, G took it into her mind that she wanted a Team Umizoomi costume from the Nick Jr show by the same name. On Tuesday night, I had staff here for in-home support hours, and one of the women is an art therapist by degree who runs the day program Gianna and Mia attend. Her name is Mary. In one hour, and with about $10, she zipped to the Dollar Store, bought a few flowers and a cap and with an old shirt of Bellas and literally, the light pink long sleeve T-shirt off my back - (flashback to white Levi's commando moment from my book), she created this amazing costume. Gianna was so happy and excited! She wore the costume without anxiety all day!
I've learned a few things during this 2 decade autism journey. We must meet our kids where they are - even when it might not be where we wished or had thought they would be. What does any parent want for her 22 year old? Happiness. Pride. Contentment. Gianna had all of those in spades today. Where? Right here at home, in a world not so far away. XOX
Note: Here's a favorite post of mine in time for Halloween. Bella is now an 18 year old young woman and she makes progress every day. I am proud of her. XOX
By Kim Rossi who was Stagliano when she wrote this
Hello, AofA friends. I thought I'd share another hopeful video with you today. Bella continues to learn how to create words with her mouth. I use that phrasing because I know the words are clearly in her mind - it's her autism that prevents them from flowing freely.
You might recall from my book that Bella is my water girl (crapisode ring a bell?) Her perseveration on water is always correlated with gut issues. When her stomach is in bad shape, she is desperate to feel water on her face. I've learned that I'm usually at fault - having tried a new food or beverage with a suspect ingredient. Carageenan, the thickener in many non-dairy milks and almost all of the So Delicious brand that we loved, destroys Bella's gut and behavior after about 6 weeks of steady consumption. It makes her aggressive, angry, she pinches, she growls, she will not sit in a car or bus safely. I guess that means the refrigerator theory can be resurrected - Mom really IS to blame - ha ha.
Anyway, here's Miss Bella with a special cameo appearance by my beautiful Mia, who will be 19 in December. That Halloween costume in the photo was from when Bella was in Kindergarten - I made her Leo the Late Bloomer - a beautiful story about a little Tiger with lots of delays - and whose last sentence is, "I made it!" And so shall Bella, and all our kids.
Kim Rossi is Managing Editor of Age of Autism. Her novel, House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.
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But you love him. But you love her. And it's not his fault. Her fault. It's not. It never was. It never will be. It's not your fault either. It never was. It never will be. Autism will kick your ass.
And you love him.
And you love her.
XOX Hang in there. Kim
By Kim Rossi
Moving is awful. Dreadful. Exhausting. FABULOUS!
Fabulous? Yes. Truly. You know that I take care of and teach my three adult daughters with autism. Most of you readers take care of your kids with autism too, young and older, like mine, and much older. As I have inched along the curve to planning for their adulthood, it occurred to me that I had to plan for mine too! We needed a snug, smaller home just for us girls. And so I found one in late August, and 30 days and a zillion minivan loads, and one moving truck later, we are in the house!
My memoir, All I Can Handle I'm No Mother Teresa, was a glimpse into our life, a life that has changed greatly in 8 years. The paperback came out on this date, 10/1/11! The girls are now women. And I am firmly in AARP territory and I'm a single parent. I'm also an Autism Mom and that means creative, right? My house is a ranch and my bedroom is in the front. No shades on the windows! Am I the only one who sees the irony of using a giant sized book cover of my memoir for window privacy on night one? My memoir exposed enough, thank you very much! In classic "one more chapter" style, I'll share this story with you.
Last Tuesday my town got 7 inches of rain in 2 hours. The entire town flooded. Cars with water up to the windows. The high school had to shut down for the rest of the week. Businesses near my karate school had to have their windows smashed by the fire department so employees could escape. It was a mess. And Bella had dental surgery that day. I was at the hospital from 10:30 to 4:00pm. At dinnertime, I was to pick up the keys to this new house. I ventured out into the giant storm. It was treacherous to drive the mere 1/4 mile from my old house! I arrived, said hello to the two realtors and heard a familiar sound. SHSHSHSHSHSHSHSHSH. Anyone remember the flood in the "Little Green House" chapter? The bathroom ceiling was leaking copious water! And the basement? 4 inches of water from side to side. The finished basement I was planning to create a suite for the girls in just days later. Good golly miss unsinkable Molly Brown! The owner showed up and was aghast. New roof is underway and hopefully a sump pump. I did not have to steal a fan to dry the house. Make note of that.
Yesterday, the movers carted everything to the new house. I was so worried about the girls having a home to walk into from their visit with Dad in New York that looked complete. Safe. Theirs. New but familiar. By the time 6:00 rolled around, the beds were made, kitchen complete, living room set, and lower level set up with a cool suite with their favorite things. I'd say I'm 85% done. Not bad single handedly! (Pun intended, tongue firmly in cheek.)
I owe my daughters thanks. They teach me every day that we have to acquire new skills and meet challenges that seem impossible every day. They do. I do too. They've taught me to believe six impossible things before breakfast - and then make them happen.
Miss G loves the wacky old convex mirror I bought a few years ago. She calls it "black mirror." It's a 1960s piece, with an eagle on it. It speaks to her. She loves it. She relies on its presence. Take a glimpse at at us through the looking glass. We're safe and happy and smiling in the very dry lower level of our sweet little house like four Cheshire cats.
Kim Rossi is Managing Editor of Age of Autism.
If A Book Catapults to the Amazon Top 100 And Media Refuses To Acknowledge Its Existence Is Autism Still and Epidemic?
We are delighted to report that JB Handley's book How to end the Autism Epidemic has crossed the Amazon 100 line. THIS. IS. HUGE. Any book in or below the 100s is selling out fast. Now, Chelsea Green, the fine publisher, and JB's personal publicity team, fine people, have worked like DOGS to send press releases, secure broadcast appearances from coast to coast.
NOT ONE MAJOR MEDIA OUTLET OR NEWSPAPER HAS PICKED UP A STORY ABOUT THIS BOOK.
ZERO. POINT. ZERO.
Today, we remember September 11, 2001. Like December 7, 1941, it is a day that will live in infamy. The world changed forever. My world had changed forever 22 months before, when my two daughters were diagnosed with autism at University Hospitals of Cleveland. The rate was an astounding 1 in 150. Quaint, yes?
Could someone remind me who are the current crop of terrorists because I feel quite afraid of my girls' futures as women with life-disabling autism. Our right to speak out against vaccination injury is eroding ever further. We've been lumped in with conspiracy theorists of the most extreme sort. Fear drives policy and citizens give up their freedoms when they feel afraid and seek someone to protect them. The fear is usually manufactured to make money for industry. Look at the cold war - some readers are old enough to remember hiding under desks in case of a nuclear attack. Talk about quaint. You'd end up a mere shadow on the linoleum floor if an actual bomb struck. But hiding felt like something. Today kids hide in bullet proof closets and have active shooter drills because young males in America are doing what lonely, disgruntled 40 year old men who'd been fired were doing three decades ago. Teachers aren't allowed to open windows in the schools or prop open a door to let in a Fall breeze. Our children have changed. It's why we at AofA began as a site about autism and have evolved into a site about the dramatic decrease in pediatric health.
On this day, I'd like to remember the dead. Their families and friends who awoke whole and went to bed shattered. And I'd like to bring back those all too brief moments where we were one nation, under God, indivisible. With liberty and justice for all. Including our vaccine injured children.
By Kim Rossi
I live in Connecticut. The rectangular New England state that borders New York to the West, Massachusetts to the North and Rhode Island to the East. We are a coastal state, with a lovely view to Lawn G-EYEland across the sound about 17 miles. Some people swim it in a charity event. I do not swim it for charity or any other reason. I once took a ferry across to speak at an autism conference. No swimming involved.
So, New England. We are supposed to be hearty stock. No frills, LL Bean loving, frosty personality hearty stock. The temps have hit high 80s and low 90s this week. We've had a summer to rival any Southern state in the USA. "Triple H!" as Dick Albert, long time Boston weatherman used to say - HAZY, HOT, HUMID. I can not recall a summer this miserable. My hair looks like Phyllis Diller got into cat fight with Roseanne Rosanadanna and they BOTH LOST.
Most of our schools in my town do not have central air conditioning. My house does not have central air. People drive around with their windows down and long for the days when they could save $700 on a car by not getting AC as an upgrade. Swear to God. New England.
Hi, Kim here. I'm going to be writing these stream of thought posts more frequently because I'm tired of people outside our community thinking badly of us. Of me. Of our lives. Of my life. Of our decisions. Of my decisions. You're in this with me - there's no escape. Sorry!
Yesterday morning when I went to make the beds, I saw that one of my girls had gotten her period overnight. Periods happen. Sheets get messy. I am a female. I know these things. This is why God made OxyCleaning things. And new sheets.
I try to keep period charts. I do. I've used paper calendars. White boards. Apps. Here's the thing. The periods do not cooperate in the least. Three young adults. Three wonky schedules. When most females are getting their period, they can feel it. Right? Cramping. Bloating. Maybe you bit the head of a stranger at Stop & Shop for scanning 16 items. You just KNOW. And maybe my girls know when THEY are about to get their period. BUT THEY CAN NOT TELL ME. So, it's a mystery. EVERY. SINGLE. MONTH. And I buy cheap sheets.
I posted a photo of the mess and a Tweet that said "THIS IS AUTISM," so that readers would understand WHAT we go through and WHAT OUR KIDS go through. My daughter awoke - (I did not say which daughter it was and I will not) - and went downstairs about her business without freshening up. She doesn't feel it. Or it doesn't bother her. Or something. It's NOT NORMAL. IT'S AUTISM. It's terrible for HER. I can deal with the clean up.
Understand? I know you do. This is success. My daughter sat quietly. Opened her mouth. The dentist has all ten fingers. So does the hygienist, although I wanted to bite her head off as she kept asking my daughter questions it was CLEAR she could not answer. "Ah, Miss B has autism," I whispered, "She can't answer you." Chatter chatter chatter. She meant well. Still.
And so does my arm.
B used my arm to steel herself for the light, the sound, the feelings. I couldn't block of course - my job was to help her stay safe and still. Kermit the Frog is trying to help. We still have him around - the 30th anniversary edition from back in 1999.
We scheduled an operating room next month for a filling. Operating room.
My blood was on her shorts. The chatty hygienist was silent.
By Kim Rossi
Back to school for some of us is not pretty photos of smiling growing kids..... It's painful to peek at Facebook this week. I'm happy for everyone despite the "yadda yadda oh my the school supplies to add up and is this teacher going to be the very best ever and what's the coolest backpack for a 5 year old and do I really have to get up at 6:00am waaaaaaaah."
In 2010 school year Isabella was brutally abused on the school bus by young Mother Bus Monitor who thought it would be "something" to twist B's hand and thumb until she screamed and bruised. We - SHE - went through months of HELL as we tried to determine the cause of her crying jags each afternoon. Once found - we wrote NO MONITOR into her IEP ever since. YESTERDAY, like first day of Summer school in July, A MONITOR was on the bus. AGAIN. And so - Bella was not able to board the bus. I kept her home since it's a half day for heat anyway. Imagine the disruption to her thought. School? No school? What's happening Mom? DO YOUR JOB people. JUST DO YOUR JOB. Apologies are MOOT. Useless.
Imagine sending a child who can not speak to school every day. I know so many of you can - and do.
Autism is merciless.
Kim Rossi is Managing Editor for Age of Autism and author of the memoir All I Can Handle I'm No Mother Teresa. If you'd like to hire her for your conference, fund raiser, event to entertain, speak, rant, maybe rave, about life raising three girls with autism, divorce and other charming events - contact Jamie Brickhouse at The Red Brick Agency in New York. No, really. LOL!
By Kim Rossi
Back to school is here. For me, it's my last year with a school aged child. Next year Bella will be in a transition program for 18 - 21 year olds. She has had 15 years of speech, OT, PT, ABA and other therapies. She's tired of the non-stop structure and having to "earn" even the smallest reward like a trained seal at the old SeaWorld (before David Kirby let them have it.) Of all the therapies she has received, PT has done the most and yielded the most success in terms of her ability to move. Speech? Nothing. OT? A bit of help. She doesn't hold a pen. She doesn't write or draw like her sisters. She's her own person. Beautiful. Quiet. Engaged in her own way with the world. Aware of everything going on around her. Everything. She's smart and understands all that she hears.
ABA and discrete trial have given her a few skills. But they have also made her and her sisters wholly prompt dependent. This was never so obvious as when her older sisters started a day program for disabled adults. The adult world is NOT prompt based. Not yet anyway. My behaviorist from DDS told our school district many years ago that the ABA model was not workable in the real world. I'm not saying that ABA is wrong or detrimental. Just that it has its place and then needs to be tapered off, and more independent skills imparted in its place. But how? And by whom? I'm dog tired, how about you?
Adult programs are learning that they need to adapt many parts of their work for the new autism population. The pay scale is typically very low - with an hourly rate less than what school based 1:1 paraprofessionals make in our area of Connecticut. That's a problem. And it will grow. As the need for programs explodes.
Kim Rossi is Managing Editor for Age of Autism.
By Kim Rossi
Many years ago, I worked for a wonderful woman who became a mentor and second mother to me. She had a saying, "Don't punish progress." I think of her wise words every day. When one of my girls attempts to put a dish in the dishwasher - I praise her and show her how to rinse off the globs of food rather than saying, "That was good BUT...." Buts are rotten. They negate praise.
I often think we're missing this point in the vaccine injury community. We've sides and factions and I've seen some pretty cruel shaming and blaming over the years for being too anti-vax or not not anti-vax enough. Many of us have kids with autism - young and adult. We're just trying to get through the day unscathed or not too scathed, and the jabs and slings and arrows really hurt. You do your thing and let me do mine. Below is a question from a medical advice column that ran in The Detroit News. Dr. Roach answers honestly about Shingrix (shingles vax) side effects. Shingles are terribly painful and disruptive and people are getting shingles younger and younger - even as children no longer get chicken pox in the same numbers. (Mother Nature exacts her pound of flesh, doesn't she?) Dr. Roach says up to 10% of recipients may experience severe side effects. That's progress. He doesn't say NEVER EVER GET THIS VACCINE! (I'm over 50 and I ain't nevah evah getting this vaccine, FYI.) I can understand someone outside our community wanting Shingrix to prevent shingles. Dr. Roach also suggested Tylenol. Ugh. Still, he acknowledges side effects in a major US newspaper. That's progress.
Dear Dr. Roach: I received the first dose of Shingrix (which help prevent getting shingles) this week and had pretty severe side effects, though in the range of what can be expected: high fever (101.5), intense shivering, a severe headache and 12 hours of extreme fatigue. The entire reaction began 11 hours after the shot and ended 18 hours after that. I am 61 and in excellent health, taking only 25 mcg of levothyroxine daily.
I have a few questions that I hope you can answer. I’ve tried looking at the clinical trial results for Shingrix, but I am not qualified to understand the information as presented.
1. Is it likely that I’ll have a similar (or worse?) reaction to the second shot? The package insert says one can react to the first, second, neither or both.
2. Are both injections identical?
3. When I had chickenpox as a child, I was way sicker than the average kid. Related?
4. If I get shingles, do I have a higher risk for a severe case?
Dear J.G.: Compared with the previous one-time vaccine Zostavax, the new two-dose Shingrix vaccine is much more effective. However, it does have a higher risk of side effects. You have had the most common side effect, though only 10 percent of people will have symptoms as bad as yours. These symptoms are caused by your body mounting an inflammatory response to the glycoprotein in the vaccine (the new vaccine does not contain a live virus). You clearly have a robust system to fight off infection.
To answer your questions in order: You are at higher risk for a similar reaction for the second shot. I would plan your day accordingly, and premedicate with Tylenol (even though it may make the vaccine slightly less effective). The second vaccine is identical to the first. I have read recent reports that there are widespread shortages of the vaccine.
Chickenpox and shingles can affect you both by the virus attacking you and by an exuberant inflammatory and immune reaction. I would guess that you are at lower risk for viral complications (such as infection of the eye, brain or lungs) but at higher risk for symptoms due to your own system, such as high fever. In many cases, the body’s response to infection can be as damaging as the infection itself.
By Kim Rossi
I've had a lot on my plate during the last year and change. More than my usual as Mom to three girls with autism, Managing Editor of Age of Autism, consultant, writer, editor, speaker for anyone brave enough to hire me, karate and kobudo teacher and student.
I got divorced in June of 2017 after 25 years of marriage. Now I can include single parent to the above list of jobs. My divorce was as rotten as any. None are pleasant. I kept it as private as I could for numerous reasons, the first being, IT WAS NO ONE'S BUSINESS BUT MY EX HUSBAND'S AND MY OWN. I got out poor as a church mouse, light as a feather, righter than rain and happier than a clam in cool, wet sand.
This week news broke about our friend Dr. Andrew Wakefield - and his possible, probably, pending - we do not know - divorce from the strong, smart, talented, smiling, partner we know as Carmel. IT IS NO ONE'S BUSINESS BUT ANDY AND CARMEL'S.
Here is a new flash for you - during my Google Divorce U education, I learned that it takes more than 7 years to get a divorce from the moment you think, "This is something I should consider," to the day a judge gives you back your maiden name. And women initiate 70% of divorces. And according to Psychology Today, One might think that the majority of divorces in heterosexual marriages are initiated by men, due to the financial and social difficulties that many women face post divorce (Brinig & Allen, 2000). However, research since the 1940’s, has revealed that women are more responsible for initiating divorce than men and that divorced women are happier after ending their marriages (Brining & Allen, 2000; Rosenfeld, 2016).
Many people think autism broke up my marriage. Not so. In fact, the opposite. So while people wonder in newspaper articles and on websites better known for social gossip speculate about the Wakefields, please keep in mind that women like Carmel, like me - are not to be pitied. Life is messy. The road changes before us. And that's OK. My book All I Can Handle I'm No Mother Teresa (which is honest and true as I wrote it I promise you) had just been published when I started to contemplate a divorce. During my VAXXED bus interview, I was asked "How do you keep your marriage alive, Kim?" And I tap danced faster than Savion Glover on Sesame Street, as I was well on my way to filing!
The bright side for me being a single Mom is that I have had precious little time to watch the news. Thank God for that. Here's my opinion. We have become a nation of bullies. I mean that. Both sides. Take a look at the Google "IDIOT" search message in the photo above. Can you imagine a world where someone(s) can change a search engine to say whatever they want? Love Trump. Hate Trump. I don't care a fig. But do consider what would happen if you searched, "religion" and "unicorns" came up? Or if you searched "car" and ONLY GM brands appeared deep into the search." Or you typed Anti-vaxxer and Andy Wakefield's photo popped up. Or mine. Or yours!
I am so proud of my daughter Gianna. This was the note she wrote at the end of her second day at an adult day program with The Kennedy Center for Special Needs here in Connecticut. No apologies. No "what ifs." No crying in my beer. No woe woe oh no. I feel genuine pride and joy. Gianna had a great day and felt happy. I call that a win. Keep the faith, friends. Stayed tuned for more from the adult world of autism. Love, Kim
Hello, friends. As we march into the dog days of summer, the news is full of angst and many of us face a summer of kids who have aged out or an ESY mishegoss. Depressing yes? Fear not - sometimes I just want to share something fun and lovely and kind. Yesterday my oldest daughter provided just the right moment. Since she began her adult day program 2 years ago, Mia has really grown and made forward progress. This without an IEP loaded with goals that were more often then not, superfluous to her life. Mia's speech has grown by leaps and bounds. Without 90 minutes of pull out speech by a school therapist. Imagine that! I hope this news give you some peace of mind as your kids approach adulthood. There is progress. Mia is using new words. And using speech to express herself for the first time beyond, "Ouch, that hurt," when her little sister has a moment of pinching.
Mia's favorite color is pink! Just like Mom. Isn't that fun? She wears a pink shirt every day. EVERY DAY. I thought it was habit. Autism. Nope. Pink is her favorite color. And don't tell her sisters, but for yesterday? Mia was my favorite child.
Share some happy news in the comments.
I Tweeted Nancy Pelosi my thoughts on the current selective outrage regarding the very real plight of children in detention right now. What's the scale for the outrage meter settings? When are kids lives more valuable or important? All children matter. Kids belong with their loving parents who are making hard choices to give them the best possible life. Parents are allowed to make choices! Sometimes they even break the law to protect their kids. Unless you are a parent altering the vaccine schedule - because in California, thanks to Senator Richard Pan's SB277, kids who are not fully vaccinated in certain grades (yet healthy) can not attend school. Californians allowed this law that discriminates against healthy children who have a right to school. No outrage, only derision. I feel jaded. I don’t want to see kids in detention centers. My heart hurts for the families. Hearts are hard when it comes to us and our kids. If there are immigrant kids in CA detention centers, their parent should scream “Not fully vaxxed!” (Translators needed!) Then maybe the kids will be released to Mom and Dad.
Under SB 277, children will only be able to attend school or daycare, public or private, if they either receive the immunizations required by law or obtain a medical exemption from the requirement from a licensed physician—meaning only MDs and DOs. Children may also be conditionally accepted into a school or daycare program if they are in the process of completing a series of vaccinations. In other words, if parents wish to leave their children unvaccinated, absent an acknowledged medical reason to do so, they cannot send them to school or daycare. They will, however, have a variety of other options available. These options include homeschooling their children on their own or in collaboration with a few other families, or participating in certain independent study programs offered by public schools. UCLA Law Rewview
Time flies. Gianna, in her fashion, is leaving the nest (not literally, she lives with her sisters and me!) and starting the adult phase of her life. School ends today. She turns 22 next month. Can you imagine that? She will be attending a program for adults with special needs. She'll be safe and well cared for and have a chance to grow and learn and gain skills toward more independence. And while it sure isn't what I had ever planned for her - I'm grateful that we have good people helping us. Mia's age out was much tougher on me. But I'm in a better frame of mind than I was two years ago, so perhaps that's a big part of my peace. I hope you are find peace too. In some fashion. We can do this, friends. Readers. Stay strong.