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!
By Kim Rossi
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.
COVID-19 will be killing more than people. It will kill dreams. But it will NOT kill our future.
I told my daughter's teacher, who had the honor and decency to call me right away, with tragedy comes opportunity. We will create something new. Bright. Good. Whole. Sustainable. Somehow.
I can't write much else about this. I'm reeling. Truly.
COVID-19 just deep sixed one of the best schools for autism the nation has ever had.
STILL I RISE - By Maya Angelou
You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I'll rise.
Does my sassiness upset you?
Why are you beset with gloom?
’Cause I walk like I've got oil wells
Pumping in my living room.
Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.
By Kim Rossi
I'm going to make this short and bitter not sweet. WE CAN NOT KILL OUR CHILDREN.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.