From John Gilmore: Shrunk

Great comment from John Gilmore of Autism Action Network on NY Times story on DSM-V: "This is to be expected from the Times. If anything the New York Times sees itself as the stentorian voice of the secular credentialed elites....

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262 posts categorized "Kim Stagliano"

Second Child with Autism Wanders, Drowns in One Week

 

Weep(Note: This comment came in today -  "Make that three. We had a 2 yo boy who has autism drown over the weekend at his family's cottage (we live in Akron, OH). He got away from his mother and went right to the river. They found him within minutes, but it was too late. They need help for funeral expenses, as no one is prepared for those costs. We are helping to get the word out about the issue of wandering and autism in our community, as well as the family's need for assistance. Here is a link to a page they created for donations: https://www.giveforward.com/fundraiser/wnd2/in-memory-of-drew-Howell Thank you, Laurie Cramer Director, Autism Society of Greater Akron www.autismohio.org/GreaterAkron"

By Kim Stagliano

I awoke to an email on Saturday, the subject line read, "My son is missing." I paused for a moment. You know how email can be - lots of funky subjects that lead to phishing emails of all sorts.   But I opened and read the email.  And then I Googled the name of the child and the details that the sender had provided.  My God, her son was missing.

Owen Black had wandered away from his holiday condo in Perdido Beach,

Owen Black
Owen Black
Alabama and within two minutes, was out of his mother's sight, having slipped out the door.

I sent out a FB missive that hundreds shared and Tweeted for anyone in the area to try to help. Joe Scarborough from MSNBC, a Pensacoloa native, retweeted the call for help. Hundreds turned out to search. To no avail. Owen, like Mikaela Lynch last week, wandered and drowned.


Mikaela Lynch
Mikaela Lynch

THIS is the reality of autism and all the blue buildings and "It's just a difference" t-shirts and the "We don't need a cure - just accept them" in the world doesn't mean jack diddly squat. AUTISM IS AS DEADLY AS CANCER FOR MANY CHILDREN.  I woke up thinking of Owen. And now the news we all dreaded. AGAIN.

I Tweeted the sad news about Owen - and yes, I blamed his autism. Someone Tweeted back, "It wasn't the autism you moron" or something to that effect.  And then she blamed "negligent parents." Really? Must have been one of the "Autism is a difference not a disability" crowd.  Or perhaps a cruel skeptic - as there wasn't a scintilla of emotion for the child, for Owen.

I disagree. At all levels, from a preverbal child like Owen and Mikaela (and my own Bella) to an adult with Asperger's - autism affects day to day life in myriad ways. And yes, some are deadly. And as far as "negligent parents" go? Well, yes, I am quite sure there are rotten, negligent parents in the autism community, just as there are anywhere. The parents I have met have moved heaven and earth to keep their kids safe. I know one Mom who slept on a mattress barricading her front door in case her son tried to slip out at night. Another Mom whom I know to be a stalwart of the community, her son was found walking along a busy state route having slipped away - alive by the grace of a guardian angel. I lost my own daughter in Orlando as she quietly slipped out a hotel room door and got onto an elevator to the lobby of  a 22 story property on 2200 acres while I was in the bathroom.  We are not negligent - we are human.   I remember being pregnant with Bella and so tired by 2pm that I had to sleep. I put on the TV and locked my bedroom door and put a bell on a chair in front of the door, knowing that Mia and Gianna would knock the bell to the ground and I'd hear it before they could leave my room. Just to get a 30 minute nap. 

Continue reading "Second Child with Autism Wanders, Drowns in One Week" »

Autism and Motherhood It's 1998 Every Day

Mia Heart BackBy Kim Stagliano Mia Heart Front

My 18 year old daughter Mia made me this pin in preschool, 1998.  I wear it every Mother's Day with pride. Little did I know that my three year old daughter would remain very much a child, even as her body grew into that of a beautiful young woman.  This pin stabs me in the heart with every passing year. Not because of my aging eyes and fumbling fingers.

On this Mother's Day, I ask you to say a quick prayer for all Moms who live with the nagging ache of worry, even as they live, love and laugh. It's there behind our smiles. Mine. Yours. I'll say a prayer for you, and wish you a very Happy Mother's Day.

2013.

KIM

April's Autism Images

Gianna High School


By Kim Stagliano

Autism awareness month has been overshadowed by recent news events. The blue glow of landmarks and skyscrapers has faded away for most Americans. Even those of us touched by autism have put aside the month's label for the day-to-day reality of caring for, helping, loving our children. 

Last week was our April vacation here in our Connecticut town. That meant long days of Count_von_countdowntime, which is always difficult for my girls, who depend our their routine. Bella, my youngest, kept handing me her purple knapsack. And off we'd go to look at the calendar and re-count the days until school was back in session. Cue Sesame Street's Count Von Count, a Stagliano entertainment staple, "That's three! Three more days until school starts! Ah! Ah! AAAAAAAAAH!"

My husband and I have tallied 37 cumulative years of caring for kids with autism in our home, if we use age 3 as the starting age for each of our girls.  37 years of facilitating, guiding, dressing, undressing, feeding, cutting food, bathing, toileting (that's mostly completed I'm thrilled to report) micromanaging virtually every aspect of the girls' lives - not because we are helicopter parents - it's simply what's required to keep them alive. I wish I could tell parents of younger children on the spectrum that life gets easier as the kids grow up - but for us and for most of the families I know with high school age children - it's getting a whole lot harder. The gaps of early elementary school turned into chasms in middle school and then canyons in high school and in "adult life?" The current programs available expect my kids to live in a parallel universe of managed care as if they leaped from childhood to advanced old age in the blink of an eye.  (Won't happen.) It's a harsh reality rarely spotlighted by blue lights.

But....   all is not lost. Never.  That photo at the top of the post? That's the showcase at the entrance to our public high school. And that pretty girl holding the Martha Speaks book? That is my beautiful daughter Gianna. She is 16 and considered a sophomore. The book she is holding is for a third grader. But take a look - our high school is saying,"Hey! This terrific kid is a member of our community and we are as proud of her as we are of our honors student who is going to Harvard in the Fall."

When Gianna's teacher sent me the photo, I just sat for second and took in the huge message it sent to her classmates, her schoolmates, the teachers, staff, everyone who walks by. I'm proud of our high school for honoring Gianna where she is - and for who she is.  

I suppose the showcase is about acceptance, a word I usually abhor. Today? I accept it. Now to turn Martha Speaks into, "People with autism speak."

CoverKim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel 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.

 

 




 

Jenny McCarthy Interviews Kim Stagliano on Autism Awareness

Kim Jenny autism oneThanks to Jenny McCarthy for allowing me to share a real life glimpse of what life is like for our family - during autism action month - in the hopes that it will educate people outside our community a bit more than a blue landmark.  KS

Read the full interview at Jenny McCarthy's SPLASH blog at the Chicago Sun Times.

Unless you know someone with autism, it’s difficult to accurately explain what life is like behind closed doors. The mom I want to highlight is Kim Stagliano, because she has three daughters with autism. If God only gives you what you can handle, then this woman is a gladiator. Please read our interview so the next time you see a tantrum by an autistic child in the grocery store, hopefully your frustration will turn to compassion.

JENNY: Tell me about your girls.

KIM: My oldest daughter, Mia, is 18. She is the most affected by her autism. She is a gorgeous, petite girl with blue eyes and a great smile. She can speak but usually only uses one or two words at a time when she needs something. You have to interact with her (a polite way of saying “get right in her face”) in order to get her to say “Hello” or “Goodbye.” She is affectionate and unlike the autism stereotype, she likes being around family and classmates. Mia was a typically developing infant. She met her physical milestones on time and could recite the alphabet and count to twenty before age 2. She regressed into autism, becoming more remote and the main red flag that we saw was that her large vocabulary did not turn into usable communication. She attends the local public high school in a self-contained classroom.

Gianna is the classic middle child: She has a good sense of humor and is a ball of energy. Gianna is always looking out for her sisters; she is kind and caring. She is 16 years old in 10th grade in a combination of the autism classroom and the general special ed classroom. Three years ago our town added a separate autism class because the teaching and behavioral requirements are so different from traditional special ed, which includes intellectual disability, physical challenges and Down syndrome. To our delight, she is also enrolled in mainstream biology with support. She uses sentences and will answer a question with a word or two if you give her plenty of time to process the question.

Continue reading "Jenny McCarthy Interviews Kim Stagliano on Autism Awareness" »

Light It Up True: Autism Commemoration

Girls easter


By Kim Stagliano

Join me in commemorating autism action month.  Let's look at other diagnoses and their fund raising efforts: Walk to End Alzheimers. Race for the Cure. Knock Out Muscular Dystrophy.  What are we "allowed" in the autism community?  "Light it Up Blue!"  "Shine a light on autism!" We deserve more.

We face numbers that are rising with seemingly no concern or alarm in the medical, government or mainstream media communities. Prevention? Taboo. Treatment? Reviled. Recovery? Impossible!  Insurance coverage? Too expensive! Housing and employment? Crickets.

Meanwhile, kids are aging out into adulthood. My oldest is 18. Families are going broke. And we are simply told to recognize or celebrate the difference?

Today, April 1,  and every day I honor my beautiful children: Bella, Gianna and Mia (L to R in photo) - I remember their struggles, their difficulties, and how hard they work to make it through a day in a world that seems content to simply "acknowledge them" and offer them a special seat in a movie theatre or a fast line at Disney, as if accommodations are the answer.  I want more for them.

Commemorate someone you love with autism in the comments.

Happy St. Patrick's Day

St P Girls

"If God sends you down a stony path, may he give you strong shoes." Here's to strong shoes for all of us as we help our children grow and prosper. Those are my girls, Bella, Gianna and Mia, St. Paddy's Day 2006. Kim

Stumped

StumpedI can't think of a headline for this post. Miss G, my teenaged, gorgeous middle child, is quite a good student. With modifications, she is learning high school science and math and reading pretty darn well. Her Dad and I are proud of her.   So she brought home a 100 on her recent science test. Fantastic! Check out the material. Can you help me think of a headline? And a nickel (do you take a check?) if you can explain the photo. Kim

Gianna Test 100

Autism Rewind

Box closedBy Kim Stagliano

A few weeks ago, I received an email, "Hi, you don't know me, but I recently moved into your old house and I found a box (that's it in the photo) in the front hall closet loaded with mini-videocassettes that I think are yours. They say things like, "Mia's First Birthday," and "Cape Cod Grandpy's Pool 1996." Would you like me to send them to you?"

My first thought? "No."

Can you relate?

As my three girls have gotten older I find it difficult to look at their baby photos, their milestone books (which were more like "yard"stone books).  Memories of their infancy and early toddler years bring a lump to my throat faster than you can say, "What could have been." Autism alters everything.

This is why I and so many other parents like me in the autism community keep working, day in and day out, paid, unpaid, appreciated, reviled, welcomed, excluded, understood, ignored - you name it - because I do not want what my husband and I have been through - and more importantly what my GIRLS are going through every day of their lives - for another family.

Do my kids bring me joy? Of course they do. Do I adore them? No brainer. Yes. Would I trade my Box opengirls for any other children? Never. Would I peel away the autism to bring forth their true personalities, talents, and basic survival abilities? You bet your sweet ass. And I make no apologies for that.  Mia, Gianna and Bella are great girls with unique personalities that are visible in glimpses large and small under their autism. Autism is what they have, not who they are.  I know there are adults with autism who identify themselves by their diagnosis - and I respect that - just as I hope they respect my feeling differently about my own children.

I'm getting avaricious in my middle age (before the year is over I'll be "nifty" if you get my drift.) I used to  want a cure for autism. Still do. Then I realized I also wanted prevention for those who have yet to have their children. Still do. Then I wanted better schooling. And treatment. Still do. Now I'm thinking about adult services. Employment. Post secondary education. Safety for women. And men. As well as girls and boys.  Color me greedy. I want plenty for my own girls - without forgetting the generation behind me for a moment.

There are so many areas of my kids treatment, education, therapy and even how we live at home that I would change looking back.  I'm still learning, as the landscape changes every year with my girls' growth.  ABA wasn't a winner for one of my girls.  I should never have been so afraid of the GFCF diet, I lost a year for my oldest worrying about how I'd manage the changes in my kitchen, my lifestyle. 

Continue reading "Autism Rewind" »

Deflated

Deflated ballBy Kim Stagliano

Deep sigh.  Ever have a day where you just plain feel tired? It's not just physical fatigue, it's a bone deep exhaustion that sneaks up on me.  And my husband. And fellow autism parents. Yesterday was one of those days. Here's why.

My girls are now in middle school and high school. Our elementary days are behind us, for which I am grateful. No more red dye soaked school parties for starters. And the girls are on the same bus schedule, a small but important bit of continuity for my day. By 7:20am I am seated quietly at my desk working with my twelfth cup of coffee in hand. It's good.

Back to yesterday. Each year, a top rated prep school in our area hosts a wonderful basketball tournament for Special Olympics. Local middle and high schools field teams from the adaptive PE classes. A sports writer celeb is the MC and the entire prep school seems to turn out with smiles and manners and exuberance to volunteer and to cheer on the players.  Many of the players march into the gym like gladiators, albeit really happy warriors, faces beaming at the attention, eating up the cheers and whoops like a big bowl of ice cream.  They high five and thumbs up and you can't help but grin from ear to ear as you watch them. It's the true meaning of Special Olympics sports.  By all typical measurements, the event is a success. Except....

If you landed on earth in 2013 from a planet that had never heard of autism, you would have been able to point your long, green finger at a group of players  who stood differently, who participated differently, if at all.    Their faces were beautiful. Their bodies lithe and intact - no wheelchairs, no signs of disability even from the top of the bleachers. But you'd know.  These are the players with autism. And the event simply isn't designed to accommodate their special-squared needs. 

The teams waited for 30 minutes in the stairwell before entering the gym for the dramatic and emotional entrance ceremony.   For some of the kids with autism, this induced tremendous stress. And behaviors.   All I could think of was Temple Grandin talking about cattle chutes.

The National Anthem was so loud Roseann Barr would have clapped her hands over her ears.  More stress.

Continue reading "Deflated" »

Old Timers and ARI

ARI logo FebBy Kim Stagliano

If you aren't subscribed to the ARI newsletter, we have a preview for you below. For many of us old timers, ARI was our first and best course of hope for our kids.  We whispered in Yahoo groups, "What is a DAN! doctor and how do I find one?"  My girls' first biomed doc was an elderly allergist who knew Dr. Bernie Rimland personally.  Today, many young autism parents might not even know the name Dr. Rimland. He's the doctor who dispelled the refrigerator theory and searched for medical treatments for his own son, thus creating ARI for all of our kids. He also founded The Autism Society of America.  His death in 2006 was a stunning blow to the community.

As the years have rolled on, it's easy to forget our community's roots. And to ignore the accomplishments of the people who used a machete in the rain forest to create a trail for us to follow.  The moms and dads, men and women, and doctors who put their careers, personal lives and asses on the line day after day because their kids, your kids, my kids came first - enduring political and media beatings over and over.  Accepting an inch, going back into the trenches for a mile.  These folks were working long before I first sat in front a computer in a Yahoo group that introduced me to other parents like me.

Thank you to ARI, to all of our friends and colleagues in the autism community from coast to coast and around the world, working in their own niche - the autism life is not an Emily Post sponsored event. That's OK.  I tuck in three kids with autism every night.  You probably tuck in one or two of your own. That makes us bedfellows.  The cliche stands - Rome wasn't built in a day. But neither did Rome fall in a day.  Or a decade.

Subscribe to the ARI newsletter HERE.

From Steve Edelson:

I hope subscribers living in the northeast are safe and warm after last weekend's blizzard. Our thoughts are with you.

Much is happening at the Autism Research Institute (ARI) these days. We just published the book Nutritional Supplement Use for Autistic Spectrum Disorder, written by Dr. Jon Pangborn. In addition, last week Carnie Wilson raised awareness about autism as well as funds for ARI on the Food Network show, Guy vs. Rachel: Celebrity Cook-Off. See articles below.

Continue reading "Old Timers and ARI" »

If CDC Were In Charge of Snow Removal

Deck snow'By Kim Stagliano

On Friday a blizzard struck the Northeast with outrageous force. Think "Hurricane Sandy" during the throes of her worst PMS with no chocolate in the house while in a freezer. That.

I live in Fairfield County, CT. We can see Long Island across the Sound.  New York city is a commuter train away. We are considered civilization on most maps.  However, this storm packed 34.5" of snow and hobbled snow removal efforts.  As of Sunday afternoon, much of the town remained unplowed, including my street. That said, we're warm and dry, never lost power and have enough baking supplies to rival the Keebler Elves' Hollow Tree - so we're good.

Our town Facebook pages are full of angry citizens though - shaking their cyberfists at the town that has not miraculously cleared out this snow fast enough. One woman went so far as to say, "I have to get to New Jersey tomorrrow! We're going on a cruise!"  I sent up a prayer she got out, and that an iceberg was developing in the Atlantic.

Like many of us who read AofA, I have a child with autism. Three as you well know. I suppose that the trials and tribulations of life in the autism trenches for so long as made me brush off petty inconveniences like being trapped in my house for 3+ days with snow drifts taller than my husband.   At one point I got a bit delusional though - perhaps after listening the the Barney Theme Song for the 99th time on YouTube.  And I went into a reverie - what if the CDC were in charge of snow removal in my town....



Kim: "Hello, town? I have an emergency.  I'd like to report 34.5 inches of snow on my street and ask you to remove it, please."

Town: "Why? What's wrong?"

Kim: "Um, there are 34.5 inches of snow on the street. You know, where we are supposed to drive Snow yardstickour cars?"

Town: "Yes we know."

Continue reading "If CDC Were In Charge of Snow Removal" »

Dear President Obama: From American Autism Families

Inauguration 2013

By Kim Stagliano

Yesterday President Barack Obama took the oath of office for his second term as POTUS.  The President looks older, with more than a touch a gray, which seems to be the case with each second term President. The First Lady left behind retro for a chic and sleek new style.  And the Obama children have grown from young girls to beautiful young ladies. I wonder if the President and First Lady appreciate just how blessed they are to have two typical girls who are able to learn and naturally develop into teenagers before their eyes?  It's hard not to compare my own three girls - who have grown taller and more beautiful, but whose developmental gains are hard fought - if won at all.

Four years ago I wrote a piece for HuffPo called, "If the First Child Had Autism."  From the post:

As an autism Mom, I thought about how different the day would be if the First Lady had a child with autism. Here's one scenario:

The First Lady is holding her child's hand tightly as they walk toward their seats, her smile tempered by the interference from her autismometer, the scanning system she uses at all times to gauge her child's mood, temperment, ability to manage the input and to anticipate a meltdown. In her other hand she holds a metal ring on which hang dozens of plastic cards with simple pictures and words. It's an odd accessory.

The boy is wearing a pair of bulky, Bose noise canceling headphones to help him tune out the roar of the crowd. His eyes are cast down to the floorboards.

The lines laid out before him capture his attention. He stops. He sits down.

A brief look of panic crosses his mother's face. She erases it. Then gently, lovingly signs, "stand up."

If you had an opportunity to tell/ask/beg/cajole/berate (choose your own verb) POTUS about what your child, your American family needs during the next four years - what would you say? Leave a comment.



Autism: You Might Outgrow It. Or Die Before Your Time.

Happy pillsBy Kim Stagliano Blue Coffin - Cut-480

This has been quite a week for news in autism. For starters, David Kirby reported that there are at least two new cases in Vaccine Court whereby there have been awards for vaccine injury in children with autism. The silence from the MSM was deafening - as expected.  After all, they were very busy getting flu shots live on air.  Then there was the IOM report on vaccine safety that got some attention although the  media has been focused primarily on the gun safety issue - shots of another kind as it were.   Oh yes, there has also been hoopla about Miss Montana, a beautiful young woman who was diagnosed with autism at age 11 and is an example of having a wonderful life with a form of autism that frankly I can't imagine in my household - although my three girls are certainly beautiful - especially my 18 year old for whom we just filed guardianship papers.

Continue reading "Autism: You Might Outgrow It. Or Die Before Your Time." »

It's Time to Be Selfish Autism Community

Me-timeBy Kim Stagliano

The autism community is full of warrior Moms and Dads who will always put that oxygen mask on their children first - and then probably put one onto your child as they themselves turn blue and gasp for air.

ENOUGH.

Did you read this on Facebook? "We're wishing NAA President Wendy Fournier well as she continues to recover from a heart attack last Sunday."

That's right. The not-even-50-year-old-female President of The National Autism Association, herself a Warrior mom to a daughter on the spectrum, suffered a heart attack. And she came close to death.

This is a wake up call for all of us to start becoming "selfish" and take care of ourselves.  If we spent one quarter the time on our own "therapy" and food choices that we spend on our kids' needs we could make a difference in our well being.

One of my favorite singers is Stevie Nicks who sings, "But time makes you bolder even children get older and I'm getting older too."   I turned 49 in December. My oldest is 18 and my baby is 12.   I'm plenty bold - and I'm sure you are too.  But I'm also getting O-L-D. I don't mind the gray hairs zigzagging through my curls. The lines around my eyes don't phase me in the least. The year on the calendar does scare me though - because I only have so much time on earth to care for my girls.

 I write a column in Autism File magazine, whose Kim Kyoshi current issue features  the special, "Autism and Fitness Getting Healthy Having Fun." I wrote about how I have started taking kickboxing, karate and Okinawan weapons classes. My goal is to earn my black belt and my AARP card in the same year. Not so I can enter the Mrs. Connecticut pageant, but to have the endurance and strength to take care of my girls for as long as they need me.  And we all know what that means.   Autism File also ran a "Caregiver SOS 10 Tips for keeping track of your own health."

What are you doing to take care of yourself?

Join us in wishing Wendy a speedy recovery.  KS

CBS Radio Covers Newtown Shooter: Kim Stagliano Questions Autism Diagnosis

Retro pink radioYesterday I was on CBS 880 - their flagship am station out of New York talking about Adam Lanza and the massacre in Newtown - just 10 miles from my home.  You can read and find an audio link to the interview Here.  Just scroll down to the mic icon and my name on the site.  From the article on their website.

Kim Stagliano is the managing editor of Age Of Autism, a daily newsletter about autism spectrum disorders.

“I think until we see proof that he was formally diagnosed by a professional with Asperger’s, the conversation can really only be harmful to families who have children and adults who are anywhere on the spectrum right now,” Stagliano told WCBS 880 on Monday.

Stagliano wrote on her website Monday, reacting to a person described as a family friend of the Lanzas telling CBS News’ “60 Minutes” that Nancy Lanza said her son had Asperger’s.

“It may have been a way for a mother to explain something that’s very difficult to explain and she didn’t realize she would end up in this position where we would be having a conversation about his formal diagnosis. Diagnoses of any condition are personal and private and here we are talking about it,” Stagliano told WCBS 880.

Dear 60 Minutes: Which Professional Diagnosed Lanza with Asperger's?

Sandy HookManaging Editor's Note: Just reading the transcript from 60 Minutes and saw the following below.  Mark Tambascio is described as a Lanza family friend. There is no mention whether Lanza was formally diagnosed - it could have been a mother ascribing a label to her troubled son - mater-diagnosis for lack of a better word.  We feel strongly that the association of Asperger's and/or Autism and the barbaric, sadistic attack by Lanza is at best, tangential. At worst, it demonizes our loved ones on the spectrum as potential killers.  This story, like the grief felt in my area (my home is less than 20 miles from Sandy Hook elementary school) across the country and the globe, will continue to unfold. I hope we can learn how to prevent the next wounded male - whatever his diagnosis, from turning his inner anguish toward innocent bystanders.  Kim

Scott Pelley: Did Nancy Lanza ever tell you specifically what her son's medical condition was? And she put a name to it?

Mark Tambascio: Asperger's.

Scott Pelley: That's what she said?

Mark and Louise Tambascio: Yeah. Yes.

Scott Pelley: That it was Asperger's syndrome?

Continue reading "Dear 60 Minutes: Which Professional Diagnosed Lanza with Asperger's? " »

Autism at 18 I'll Love You Forever I'll Like You For Always

Headshot MIAHappy 18th birthday to our beautiful daughter Mia. Do you remember the book, Love You Forever? It's about a boy who grows up to care for his mother, just as she cared for him. It has a creepy edge to it (at least that's what I always thought) but I used to sing to Mia, "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be."

I never expected those words to ring so true. But here we are. We've filed guardianship papers, are preparing trusts so family can help the children when they are older - and old - and I've stopping crying. This is a tough road, friends. And I'd be lost without my AofA family, my autism family, and my "real" family meaning those family members who have stuck by us and show their love and care for my girls in so many ways.



OK, maybe I haven't stopped crying just yet.

Houes of Cards 160Kim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel 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.

 


President Obama Will You Acknowledge and Act on Vaccine Injury?


Hep B reaction

Congratulations to President Obama on winning a second term.  Healthcare has been a priority for him.  Will the President acknowledge the grim side of the ever rising childhood health epidemics including vaccine damage like this adverse reaction to birth dose vaccination against Hepatitis B?

Meet Ian Gromowski.  He died at 47 days old, never having left the hospital after a severe reaction to his Hepatitis B vaccination.   Hep B is an IV drug and sexually transmitted disease which his mother did not carry and so could not have transferred to him during delivery. 

I think of him - and how the media, AAP and public health and pharma rank non-life threatening "vaccine preventable disease" so far above his tragic story. He mattered. He matters. And I for one am not going to forget him. Not today. Not tomorrow. Not over the next four years.  Read about Ian's story at IansVoice.org KIM

Ian G

Yes We Ring The Bell. Yes The Door Opens. No You Can't Go In.

Halloween 2001By Kim Stagliano Halloween 001

Halloween is growing nearer - I can tell because there are more Christmas decorations for sale in the Stop & Shop, a sure sign that Halloween is upon us. As jabberwocky as that sounds - I think that's how much of Halloween feels to our children on the spectrum. It's a day (and evening) full of contradictions, things that aren't what they appear to be, and mixed messages.  For instance, how do you explain to your child, to whom you have taught doorway etiquette, the difference of Halloween.  Usually, doorway teaching goes like this:  "We ring the bell and wait for the door to open. We only ring once. No. Once. No. Not five times in a row. No. It's not a train whistle dear. Just once. Good. Now we wait for the door - no. Just once honey. Good. OK. Now you say, "hello," before you walk into the house. Don't let the screen door sl---.   Oof! It's OK. I'm fine (rub head). Good girl."   Leo costume for bella

Then there's Halloween.  "We ring the bell. Someone we don't know opens the door. Yes, that's a stranger honey. Right, we ring only one time. Good girl. Well, no. We don't walk into the house. Not on Halloween. We stand on the stoop and say Trick or Treat. Remember how we practiced that, honey?  And then they give us candy. I know you can't eat most of the candy. Yes, I take it and replace it with other candy that's GFCF. (In sotto voce, I eat it.)  Right.  First ring bell. Then take candy. Then walk away"

Don't get me started on costumes. I like every Mom of two toddlers who grew up with Dr. Suess Richard Christy Halloweenpurchased the Thing One and Thing Two costumes for Mia and Gianna when they were 2 and 3.  You can imagine how well the scratchy blue wigs went over. It took Gianna 11 years  before she'd allow me to put a touch of makeup on her nose to become a doggy.  I usually made the girls costumes.  Like the year Bella was Leo from Leo the Late Bloomer - with a comfy orange sweat suit and the hideous ghost I tried to make Gianna with yards of tulle draped over a white top.  Note to self, you should know how to sew if you are going to attempt to make a costume. Mia has never liked Trick or Treating. She's 17 and I no longer feel the urge to drag her out the door. Poor Bella, who has vision and gross motor issues spent the first 10 years of her life sitting in a wagon as I dragged her from door to door. Three years ago I dumptrucked her off the curb. Yay. Still no Mother Teresa.

How do you handle Halloween in your household? The food, the costumes, the school parties (crossing myself as if to ward off evil) the ever ringing doorbell.   On the 31st feel free to ring our doorbell Chez Stag. I'll be handing out candy as always. And my costume will be the typical Autism Mom attire (see photo.)

Boo!

Houes of Cards 160Kim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel 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.

 



Yes Autism Really Does Suck and Then Someone Dies: Often The Person with Autism

WeepBy Kim Stagliano

Earlier this week I ran a post on HuffPo called Autism Sucks and Then We Die. It was a general audience version of a post I'd run here at AofA - trying to call attention to the ever advancing manmade autism epidemic and the real fears families face as we, the parents, grow older.   And ultimately die.  I try to engage commenters at HuffPo by responding to their comments, both those that are favorable about the post and me and those that take me to task. I can learn from everyone, and in particular, I have appreciated learning from people who themselves are on the spectrum. That might come as a surprise to some - it shouldn't. My writing style is pretty much my personality - open to conversation, sociable and ready to have a heart to heart or a head to head talk.

In particular, some commenters who said they were on the spectrum took my headline "Autism Sucks and Then We Die" to mean that I thought they themselves sucked. One went so far as to define himself not as autistic, but as autism itself. "I AM AUTISM." I promptly and politely disagreed. Autism is a medical diagnosis, not a option on the US Census.   I was quick to say that I did not say that people with autism suck. And I told them of the old song by a Boston Band called "The Fools" from which I took the headline, having grown up in Beantown and heard the song many times:

Today in my Google alert there was a story that gave me a familiar pit in my stomach. Autistic Boy, 11, Dies After Hit By SUV. Another child whose life was cut short by his autism. Sure, some folks will say, "kids are struck and killed by cars every day, Kim." Yes. And kids drown every day too. But take a look at the headlines and tally up how many have the word autism in them. It's gotten to a point where when I hear "drowned" my very first thought is "Did the poor child have autism?" From the Houston article:

The boy has special needs and was in the care of his father when he wandered away as the father was doing laundry, said Estella Olguin, spokeswoman for state Child Protective Services.

Continue reading "Yes Autism Really Does Suck and Then Someone Dies: Often The Person with Autism" »

Autism Sucks: And Then I Die.

 

Mia and Mom!

By Kim Stagliano

It's been a while since I've spooned up a goodly dose of medicine to you.  Today I ask you to open wide, say ahhh, bend over and cough all at once.

Last week I was in Dallas, Texas, speaking to a wonderful group called Metrocare that provides services to low income families with children who have developmental disabilities.  I flew in a airplane all by myself. I was picked up at the airport and whisked to my luxury accommodations in a car that costs more than my annual income. I was ensconced in a room with terry robes and slippers (in case I had the desire for a massage or other treatment in the spa downstairs) and a mini-bar (didn't touch it) and a bathtub my Bella would have sworn was her very own indoor pool.   I was living large, my friends.   I was even.... on TV:

Yesterday I picked up this (below) at Probate Court in my town. What is it? It's a form that enables my husband Mark and me to take away our daughter Mia's adult rights when she turns 18 in December.  You read that correctly.

 Probate papers

Continue reading "Autism Sucks: And Then I Die." »

Autism and Bullying in Time Yields Harsh Comments

Fisher Price BullyTime Magazine ran an article on why autistic students are targets for bullies. Our kids lives are tough enough - whether they have full blown preverbal autism or Asperger's and an IQ of 150. A friend of  mine with an adult family member is in classes at a local state college. She told me that there is a student  who announced at the beginning of the semester that he has autism - in a rather long descriptive manner. She has watched him enter and leave class alone. His perseveration is the middle ages - and kids in college care more about Saturday nights than jousting knights. My friend has watched the other students turn away from him, snicker and avoid him.  How do we help our kids fit into the world while educating the world that our kids have a right to the pursuit of happiness as much as any bully - or commenter like the one below?  Click into Time to read more comments. Especially a rebuttal by a certain media editor we all know and love... KS.

Did anyone stop to consider that autistic kids get bullied more because they are annoying as hell? 

My girlfriend is a High School teacher and she has many, many autistic kids in her classes and they are almost without exception the most belligerent and disruptive students in the class.

The fact that they don't fully understand their actions is little comfort to the other kids whose education is disrupted due to their outbursts and constant inappropriate behavior.

These kids should be in special education classes away from the general student population where their special needs can be met without degrading the learning environment of others.

###

 Not all autistic students are loud and annoying.  Don't assume that every autistic student is annoying.   You are being dreadfully insensitive with your first sentence.  Please stop offending other people just because they are different.

Continue reading "Autism and Bullying in Time Yields Harsh Comments" »

Yahoo News "Can You Prevent Autism" Mentions Pregnancy Flu Shots as Risk Factor

YahooManaging Editor's note: Valerie Isakova, Yahoo Shine Parenting Editor had a "home page" feature yesterday called, "Can you prevent autism?" which naturally caught my eye. I clicked into the article expected to see simply the word, "NO." To my surprise, Isakova brings forth tough questions and even dares (I wonder if she knew what a risk she was taking) to question vaccination while pregnancy following the NYT article this weekend asking if autism is an immune disorder,  The NYT article glosses over the two 20th century major medical advances that have affected our immune systems - vaccinations and antibiotics - but raises intriguing questions nonetheless. (Perhaps the deletion (ha ha genetics joke) of the word vaccination from the article is how it got published?)  It even mentions the use of parasites to return the system to its "earlier" (healthier) biological state, a treatment many of us learned about more than three years ago at Autism One. And one derided by those who refuse to acknowledge or review any treatments for autism - and in fact look to remove them from the market.  So thank you to Ms. Isakova for writing this piece.  She did what journalists used to do regularly - asked questions. We hope to see more. 

For the past few decades, autism has been one of the scariest mysteries of parenting, with debate swirling around its definition, how rapidly the epidemic is growing, and most urgently, what causes it. 

That's why we were surprised to read a claim this weekend by science writer Moises Velasquez-Manoff in the opinion section of The New York Times that scientists have figured it out: In at least a third of cases, autism is an auto-immune disorder that starts in the womb.


"The mother's attempt to repel invaders - her inflammatory response - seems at fault," the story says. A range of maternal issues from disorders like celiac disease, asthma and arthritis to getting sick during pregnancy in the most common ways--flu, urinary tract infections--have been shown to be significant risk factors for autism.

The story is a science-writer's synthesis (informed by a wide and reputable body of science) but has far-reaching implications for all pregnant women. Most surprisingly, it includes a twist on the autism-and-vaccines story, which is that the mother being vaccinated, even for common things like the flu, could be a risk factor for autism.

Current CDC guidelines and most obstetricians recommend routine vaccination during pregnancy...

Read the full article by Valerie Isakova, Shine Parenting Editor HERE.

Denying Healthcare To Those with Autism Isn't New

Denied stampBy Kim Stagliano

Traditional and social media are abuzz with a story of a Pennsylvania man with autism who has been denied a heart transplant at The Hospital of the University of Pennsylvania over his "psychiatric condition" and "autism."  His mother, Karen Corby, is rightfully outraged that her son's life has been judged and fallen short of the "criteria" for life.

In thinking about the story, it occured to me that while denial of a heart transplant is cut and dried no bones about it refusal to give medical care to a sick American - it's only the ugly publicized tip of a dirty and monstrous iceberg under the surface of healthcare for people with autism. I've seen denial of healthcare to my own three daughters because of their diagnosis many times. Here are the times I can rattle off the top of my head (it's the last week of summer and I'm running on six brain cells and an overdose of Starbucks Darker than Peat Moss brew.)

1) Pediatric hearing test. Nurse asked me if daughter would answer yes or no to the sound. I said "No, she will not."  "Then we can't test her." And that was that - no hearing test, which is a standard well visit procedure.

2) Vision test.  See above.

3) GI tract testing. Child stopped having regular bowel movements after age 12 months and the introduction of whole milk and Cheerios. Pediatric response? Miralax.

4) Grand mal seizures. LA neurologist friend strongly suggested a spinal tap to rule out causes. Children's hospital doctor appalled that I asked - "Why would you want to put your daughter through that?"

5) Clumsy gait, knocking knees, hips splaying while trying to walk up stairs. (And not walking until 23 months.) Requested eval for cerebral palsy and questioned birth process problems. "It's autism."

How about head banging? Headaches. Posturing the body over a sofa arm? Gut pain. Incessant infant crying? Brain swelling. The list goes on and on - denial of medical care because of the autism diagnosis.

Continue reading "Denying Healthcare To Those with Autism Isn't New" »

MSNBC's Starschmucks Morning NO.

Morning joe

Update: Reports say Joe Scarborough has apologized (HERE).

By Kim Stagliano

Joe Scarborough, the host of the MSNBC program  "Morning Joe," put forth the brazen suggestion that James Holmes, the shooter (OK, "alleged" shooter) in the Aurora, Colorado, midnight showing of  the The Dark night last week is on the autism scale.

Joe. Joe. Joe.

First I have to ask: Autism scale? Even a first year special ed student would say "autism spectrum." Why didn't you just blurt out "Asperger's" - I think you know that term pretty well having a son with the same diagnosis. 

Scarborough's words were: “you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.”

It happens more often than not? Really? Wrong planet, Joe.

In 2007, when Seung-Hui Cho shot up the bucolic campus of Virginia Tech, killing 32 and wounding 25, reports of his odd behavior were chalked up by some as "autism." I went on a verbal tear against this assumption that lumps people with autism in with violent mass murderers.  The post was called You Can Call Me Angry, Just Don't Call Him Autistic" in which I wrote, If the media really begins to call this murderous, evil man autistic, or if the general public simply assumes if they heard the word once it must be true, I will blow my stack. It will insult every person on the planet with autism.

Continue reading "MSNBC's Starschmucks Morning NO." »

Actor Rob Schneider Speaks Out Against CA AB2109

Rob SchneiderBy Kimmerooski Staglianooooooh

ABC News10 Sacramento Actor Rob Schneider has spoken out against California's AB2109, a bill that would require parents to get a doctor's letter in order to opt out of a vaccination, in effect clogging doctors' offices with unneccesary and likely unbillable visits to exercise what should be a simple healthcare right.  From an article called Rob Schneider shows his political side in Breckenridge by Kimberly Nicoletti of Summit Daily News:

“There's nothing more basic in a country than good food, clean air, clean water, education and health care,” Schneider said in a phone interview Wednesday that consistently turned back to politics. “We've managed to ruin all of those.”


After explaining why he returned to stand-up and began touring a year ago (like most comedians, it's all about the immediacy), he begins pounding the Republican Congress, saying more cutbacks in social service is “terrible.”

...After more talk about how deregulation has led Americans to lose well paying jobs and industry (“that's what's toppled this economy on its head,” he says), how the average American senior consumes 7.5 different prescription drugs daily (his 82-year-old mom doesn't take any prescriptions, and “she's doing great”), and how appalled he is that Americans are putting up with radiation (which he says preliminary studies show inhibit DNA replication) at airport security checks and accepting fluoride in their water and mercury in their fillings (meanwhile, he points out, “people are dropping dead like flies.”)

He combines chutzpah, compassion and common sense, something all too rare in today's political world.  So how to we start "Makin' copies..." of Rob?

You can follow Rob on Twitter @RobSchneider. Here's the news clip from Sacramento:

What is Your School Doing for Your Child?

Bella Steam

By Kim Stagliano

It's what we in CT call "PPT" season. That's when we go over IEPs, plan transitions, talk about Extended School Year programs and generally recap the school year. I have the pleasure (insert sarcasm emoticon here) of attending 3 PPTs each year.  My oldest daughter is in her second year of high school. She has two more years on campus and then embarks on the "transition" period that for our district, has been called the ELITE program. And guess what - our SPED and adult transition team has realized early on that the ELITE program, which now has students with Down Syndrome, physical disabilites and other non-autism diagnoses simply will NOT WORK for the four students with autism headed toward adulthood. (Insert shocked face emoticon here.)  The district has invited us parents of high school kids with autism to help plan what their "gap" years will look like. Those are their years between the 4th year of high school which is on campus and the remaining years until age 22 when they "age out" (insert vomit face emoticon here.)  I'm fortunate that they see that autism is VERY DIFFERENT from other disabilities and requires something brand spanking new - cut from whole cloth.  And I'm excited and encouraged to create a working program for my kids.

My middle child is a freshman in the autism room at our high school. She will follow right behind her older sister.

My baby - that sweet kid in the photo above - is transitioning to middle school, 6th grade. Her oldest sister blazed the middle school autism program. There was no program for autism in our district for Middle School in 2007.  Again, the district realized that they had to adapt the elementary program for the Middle School academic format. And they did. 

The device Bella is lying in is called a "steamroller."  It's a deep pressure machine that rolls over the body - and as you can see, my little pal is quite comfortable in it. Temple Grandin talks extensively about her "Squeeze machine." The company that now makes Temple's machine just started following me on Twitter and we had a chat. Their machine uses air pressure controlled by the user.

So what does this have to do with school?  During my PPT meeting on Wednesday, the school alerted me that they were buying a steamroller for the middle school. We had mentioned it briefly at one of our review meetings last winter. And they listened. And spent money! For my kid. I love that. It will be in her classroom and she will have access to its calming effects.

What does your school do that makes your life less stressful and your child's day more successful? And do you think we should get a king sized steamroller for the entire Stagliano family?

House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel 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.

Family Commences Civil Action Against First Student for Assault of Autistic Child

Kim Bella headManaging Editor's Note:  The law suit below stems from the assault(s) against my youngest daughter Isabella on the special ed bus in 2010.  Her case elicited concern and kindness from all of the autism community - I appreciated and was encouraged by the unity and support. That photo is from 2006, and is one of my favorites. (We were on a trampoline, not auditioning for a Breck commercial.) Our children with autism are not acceptable targets for bullies and abusers.  None of them. Whether born with autism, regressed into autism, 3 years old, 43 years old. NONE OF THEM. The timing of this lawsuit, just before Good Friday and Passover, while unintentional, is appropriate, I think.  The press release from our attorney follows below. Thanks, everyone. Kim

Attorney Michael T. Meehan of Meehan, Meehan and Gavin, LLP has commenced a civil action against First Student, Inc. on behalf of Isabella Stagliano, a minor child with severe autism.  The lawsuit stems from a series of acts of physical abuse committed by Jennifer Davila, who was employed by First Student Inc. as an "aid" for special needs students traveling on a First Student, Inc. school bus.  The minor child was a nine year old special needs student diagnosed with autism. She was not able to speak.   First Student, Inc. contracted with the Trumbull Board of Education to provide transportation for all students, including special needs students enrolled in the Trumbull school system.  Additionally, the operator of the First Student school bus at the time of these incidents was Evelyn Guzman; the mother of Jennifer Davila. and Guzman was arrested and charged with the felony offense of risk of injury to a minor for texting and driving said school bus.  Guzman is currently on  probation.

As a result of the acts of physical abuse, Jennifer Davila was arrested and convicted for her conduct.  First Student, Inc has been named in the lawsuit for failure to properly train, supervise, inspect, or investigate its employees for unreasonable risk of harm to the minor child.  As a direct result of the conduct of First Student, Inc. and its employees the minor child suffered permanent personal injuries and damages.  In particular, the conduct of First Student, Inc.'s employee has had an emotional and educational impact on the minor child.

April is autism awareness month.  According to National Autism Association, "Autism is a neurodevelopmental disorder characterized by social impairments, cognitive impairments, communication difficulties, and repetitive behaviors. It can range from very mild to very severe and occur in all ethnic, socioeconomic and age groups."

Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years."

This lawsuit is brought on behalf of this minor child as a voiceless victim and all the other special needs children who  may become victims of physical and emotional abuse as a result of of their disability. ###

World Autism Day: Light it Up Black and Blue?

Leg Injury

By Kim 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.

The BLUE.


House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel 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.

 

Kim Stagliano From the Pew: A Catholic Mom Who Closed the Factory

Family photo Golf summer 11By Kim Stagliano

As you know, there's a push nationawide to eliminate healthcare choice when it comes to vaccination. In a parallel universe, there's a push to limit access to birth control and women's reproductive health. Both involve religion as far as I can see - if you consider the Church of the Immaculate Vaccination as a denomination.  I wrote this post for HuffPo - and run it here not to bust open a religious debate per say - but to shine a light on how it feels when someone wants to make your healthcare choices for you and denigrates your decision when it doesn't jive with the "gospel."   Here's an excerpt, please go to Huffington Post to read and comment on the full post.

...My priest just told me that because of my personal healthcare decision, my husband and I have a lesser relationship and my children are sub-par to those born by natural family planning. And that I, mother of not one but three (yes, Bella too) children with autism, who gives every waking and barely sleeping moment of my day to my kids and will until the day I die, am somehow not able to engage in self-giving.

This week, the bulletin included more comparisons of birth control as abortion and this gem, "...it is the pro-contraceptive crowd," (he makes it sound like a few erudite pipe smoking Upper West Side liberals instead of the majority of American women) "that actually attacks the dignity of women." The "pro-contraceptive crowd?" I left Church close to tears and when I saw this priest standing outside the door, I sputtered, "This is very troubling. You do not live my life."


House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel 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.

 

 

I am the Lorax!

Lorax3By Kim Stagliano

The Hartley family of Texas used hidden cameras in a group home to prove that the paid staff was assaulting their son. They caught the abuse on tape. He's 22! He is likely to have another 60 - 65 years assuming an underpaid, undertrained piece of sh*t "caregiver" doesn't kill him or allow him to wander to his death.  "Taylor's autism and his size made it difficult for him to remain with his parents." Oh my God - I see teen boys at speech every week who are 5' 9" - 5' 11' inches tall and weigh 250 pounds. One boy must weigh well into the 300s. They are teenagers!  That's likely a "side effect" of their medications. How long before they end up in a group home because aging parents can not care for them any longer?  They are just too BIG.  The adult wave is coming and the injuries, abuse and even death that will follow will grow until the mainstream world simple says, "Ah yeah, another one of those people died in a group home."

I feel like The Lorax. Anne Dachel is definitely The Lorax. Most of our readership is too. "I am an Suess_lorax_speaks_for_the_trees Autism Mom! I speak for our children!  My husband and I have already sat with the police, the District Attorney talking about assault against our child with autism, when she was 10! Wake up America - we need treatment (put the needle on the broken record again) and yes some form of recovery for our kids. Or I fear they will end up like the truffula trees. THWACK!  Unless...

An Allen couple suspected a caretaker was abusing their autistic son. But they had trouble convincing operators of the group home where he was living, as well as state authorities. So they took matters into their own hands, which led to a shocking discovery and criminal charges.

Karen and Michael Hartley secretly placed a hidden camera inside their son Taylor’s room at residential nursing home and documented an alleged beating of the 22-year-old.

“You promise this child when they’re born that you’re going to love them forever and you’re going to protect them,” Karen Hartley said of her love for her son.

Taylor’s autism and physical size, as he grew older, made it difficult for him to stay with his parents.

Continue reading "I am the Lorax!" »

And So the Anger Against Autism Begins

CardboardboxManaging Editor's Note: I'm noticing a trend in articles about autism, like the one below in the LA Times" of condescension and dismissal.

Look at the words of this psych expert below, 'children with autism "know how to push every button known to God,"'. Roll that around your brain for a moment. There are times when I haven't been sure my kids know what their mouths are for - honest to God - and an expert is accusing our kids of "pushing buttons" as some kind of excuse for placing a child in a box as punishment? The fact that the child often seeks a quiet space on his own doesn't excuse using his safe place as a punishment. Imagine if a professional said, " Yeah, those cancer patients with their constant puking, they sure know how to push buttons, don't they?  And those dippy peanut allergy kids all anaphylactic shocky and wheezey? Real pains in the ass."  

I've been accused of not loving or respecting my kids the way the are because I want to (eyes darting left and right) "cure" them of their autism. Fact is, the world is going to start hating people with autism because of the lack of medical attention to treatment, the acceptance movement that has done precious little  to make our kids more acceptable and the COST to society. You start affecting someone's pocketbook, they take notice.  People are already pissed off and stressed out about their dwindling finances. Now ask them to pay a couple of million over the lifetime of a person with autism and see what happens.

I don't believe our kids should have carte blanche to interrupt a classroom, especially if mainstreamed.  But the anger toward kids who are on the spectrum horrifies me. Read the comment thread on the article. It's nauseating. 

I noticed similar comments about TJ Lane, the boy who murdered three students in Chardon, Ohio a rural suburb of Cleveland. TJ attended Lake Academy, "an alternative education program offering a unique approach to formal education for students who are experiencing serious challenges in meeting expectations within traditional school settings. Many of the students attending The Lake Academy are considered “reluctant learners” and may be struggling with a variety of individual problems, such as: substance abuse /chemical dependency, anger issues, mental health issues, truancy, delinquency, difficulties with attention/organization, and academic deficiencies."  Commenters in Cleveland are asking why a boy who had to attend a "special" school was even allowed to step foot in a public school.  I understand the anger toward him and make no excuses for his actions.  But the call to segregate/remove students who are different could easily capture many of our own kids (who are not violent or severely mentally ill) making them pariahs in education and by logical assumption, the workplace that follows school.  

I anticipate a very rough future for our loved ones.

I started karate classes last Fall. It's supposed to make me a bit more zen than my usual type A self.  Part of our code states, "I shall not use my skills outside of the dojo except in the most extreme circumstances." I look at what's happening to kids on the spectrum and I ask, "Define extreme..."

When Kim Rollins' son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project.

No, Sage Rollins explained, he didn't need the scissors for a project. He wanted them so he could cut a window in the cardboard box his teacher sent him to sit in.

Sage, 10, told her that his teacher at Ronald Reagan Elementary School, in the southwest Riverside County community of Wildomar, sent him into the box when she became upset with him. Before that, she forced him to sit in a darkened supply closet, according to Rollins.

"I was outraged. I was insulted," Rollins said from her home in Wildomar, near Lake Elsinore. "I cried when I heard.

School principal Nori Chandler told a Riverside County Sheriff's Department investigator last month that Sage went into a closet on his own, when he wanted "quiet time," and was never sent by the teacher. Sage also told the deputy he went on his own when he needed a quiet place.

The principal told the investigator that a district counselor provided a "decorated large cardboard box" for Sage that was placed in the back of the class, to provide a refuge for him when he had sensory overload, according to the investigative report, a copy of which Rollins gave The Times.

The box, about the size of a large television, was turned on its side, allowing Sage to use the open flaps as a door.

The deputy who investigated the allegations "failed to find any evidence of criminal wrongdoing," and the case has been closed, said Deputy Joshua Morales, a spokesman for the Sheriff's Department. The investigator's report said there did not appear to be any intent by any school employee to mistreat or abuse Sage.

Although she taught Sage in a mainstream classroom, Sabrina Beth MacFarlane has a state education specialist credential for working with special needs students. She has been placed on paid administrative leave by the Lake Elsinore Unified School District and was not available for comment.

"Appropriate personnel action has been taken, and the matter is under investigation," said district spokesman Mark Dennis. "We're taking this matter very seriously."

Rollins' attorney filed an administrative legal claim against the district and the teacher, a likely precursor to a lawsuit. The claim alleges that the isolation was involuntary, punitive and caused other fellow students to ridicule her son.

Continue reading "And So the Anger Against Autism Begins" »

Love and Autism

TaylorBy Kim Stagliano

There's (a love) life beyond little boxes of Valentines and a sack full of red dye laden candy arriving from school with a child today. Many of our kids are growing into teens and adults. Some are already there. And that means teen and adult topics. Two of my girls are teenagers. One of them is very vocal about her crush on Taylor Lautner. We celebrated his 20th birthday on Saturday. (I felt fossilized!)   If you've read my memoir, you know G likes to carry transitional items. The manatee turned into a book of emotions, which was replaced by a family photo including a cute older cousin, who was kicked to the curb by a cute 7th grade boy in her yearbook and then an 8th grade boy in the next year book and now? TAY-LOR. It's natural.   See the photo? That's the US Weekly magazine Gianna now carries. (I bought 8 more copies last week.) And you can see a bottle of Love's Baby Soft perfume - remember that from your own girlhood? We had sleep issues a few weeks ago - serious ones - and a Taylor Lautner iron-on transfer onto a white pillow case assuaged her fears. You gotta be creative right? But you also see on her pillow Spot the dog, from the children's stories. We're a mix of teen and toddler in some ways. The girls still love Sesame Street (and so do I) for instance.  Such are the differences of growing up with autism.



We have a lot of work ahead of us clearing tall trees in virgin (pardon the pun) territory regarding adult life, socialization, human emotions and yes, maybe even sex.  I'd like my children to grow into women who can experience the joy of a full human relationship.  Should I simply assume they are not worthy or capable of that even while they are young and make my life easier by never having to think about it again? I don't think so.  Although it's sure tough to think and write about, I promise you.

Our friend Chantal Sicile-Kira and her son Jeremy are publishing a book called A Full Life with Image-200x300Autism that will help families and caregivers delve into these pressing issues. We'll have a copy for you later this Spring.

Each week I see a 23 year old man with autism who is quite verbal at speech therapy. One day he reached out to touch a female in the waiting room. His Dad leapt up, alert. He spoke to his son. I heard the young man say to his Dad, "But I want a girlfriend."  His Dad immediately launched into how to speak to a woman and how NEVER to touch her - even in friendship.  That father did a great job of respecting his son's desires while trying mightily to protect his son from acting in a way that could go downhilll FAST. 

Continue reading "Love and Autism" »

House of Cards by Kim Stagliano FREE Today!

Free stuffWOW! Amazon Best Sellers Rank: #13 Free in Kindle Store (See Top 100 Free in Kindle Store)

 #1 in Kindle Store > Kindle eBooks > Fiction > Genre Fiction > Romance > Romantic Suspense
    #1 in Kindle Store > Kindle eBooks > Fiction > Genre Fiction > Family Saga


My gift to you Sunday, January 15th - FREE download of my funny, fast paced romantic suspense House of Cards.  #1 in the Family Saga category (oh, autism it's a saga isn't it, friends?"  And it's in the top 25 Kindle books in the free category.  Don't forget the Kindle app (right here)is available for every device (PC and Mac included)  except your toasters and Nooks!  I'm also proud to on the same "readers who bought this also bought" with David Lender's medicaLegal THRILLER Vaccine Nation. And Janet Evanovich (pinch me!)

Book Description: Bounty Hunter Stephanie Plum would think her life is easy compared to Kat Cavicchio's. When a car crash with a New England Patriot lands her sister in the hospital, Kat has to move in with her brother-in-law to take care of her young niece and nephew – with autism. The windfall accident settlement should turn around her financial woes and help the kids too, until the football player kicks his last field goal in a gruesome murder that lands Kat's entire family in the cross hairs of a drug dealer who thinks she is hiding something from the football player that he wants. Can a sexy State Trooper throw a Hail Mary pass and save her life before the clock runs out on her life? House of Cards 160

Q&A with author of House of Cards, Kim Stagliano

Question: Which books or movies influenced you in writing House of Cards?

KS: My life as a Mom of three girls with autism is pretty stressful (understatement of the year there) and so I read and watch movies for entertainment and laughter. I'm a big fan of the Farrelly Brothers comedies and love offbeat, irreverent humor. I created Kat Cavicchio in the hopes that readers will want to meet her again and again, like Janet Evanovich's Stephanie Plum, Rita Mae Brown's Harry Haristeen and Meg Cabot's Heather Wells.

Q: You wrote a Memoir called All I Can Handle I'm No Mother Teresa and you blog and write for magazines. Why did you decide to write fiction?

KS: So I can kill people! OK, maybe not. Fiction gave me the freedom to have a character say things that would sound dreadful coming from me, a real Mom. It's fun to create a world where you control the events - good and bad - and write the ending you want. If only life were so easy.

Q: Is House of Cards an "autism book?"

KS: No more than Jodi Picoult's House Rules would be called an "Asperger's book." House of Cards is about the growth of Kat Cavicchio and the arc of her Italian American family's life. Sophie and Dom are characters whose autism shapes them - they help Kat learn who she is and how to grow up.

Q: Is House of Cards "your" story?

Continue reading "House of Cards by Kim Stagliano FREE Today!" »

"What Will You Do For Autism" Asks Iowa Boy to Each GOP Candidate

By Kim Stagliano

Our good friend Lin Wessels and her son Sam have barnstormed Iowa to meet and greet the GOP candidates.  Below, Sam asks them what he or she will do for autism as President.  We need to do something like this at every event. Ask tough questions. Demand hard answers.    When people see my girls, spend a few moments with them, the disconnect of their age and beauty compared to their ability to speak and interact makes grown men weep. I kid you not. The glossing over of the real hardship of autism, even by the well meaning, has contributed to the lack of alarm Anne Dachel writes about every day. Despite the difficulty, bring your kids to meet the political candidates at every chance. Hold up a sign, holler at the top of your lungs, plunk yourself in front of a TV camera. It gets easier every time.  We can make a difference. Let the children lead the way.

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Continue reading ""What Will You Do For Autism" Asks Iowa Boy to Each GOP Candidate" »

New Year's Eve!

Gty_times_square_ball_thg_111229_wblogBy Kim Stagliano

Credit: Don Emmert/AFP/Getty Images

New Year's Eve ends with a big ball - dropping in Times Square, New York City in America, and in variations around the globe. We know from big balls at Age of Autism. It takes guts, brains and sometimes derring-do to care for our kids with autism (for those of us who are parents) and to write about the realities of this epidemic - which shows little sign of abating or stirring any true concern in mainstream America. Indeed, the effort to cover up the difficulties of autism has never been stronger. Hard to believe that kids as sick as our own are bullied every day in the media, on blogs and in medical journals. 

Tune into ABC to see the ball drop in New York City. (Click here for some cool facts about the ball itself.) Tell us what your city or town is doing for the big moment. And how you'll ring in the new year. Me? We're having two families over to bring our total to five kids (4 girls!) with autism and one with Down Syndrome -  we'll have good food and controlled chaos and a whole lot of love and acceptance.  I'll probably be asleep at midnight. Autism doesn't take a break for holidays (or hangovers!)

Happy New Year, friends.

KIM

House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel 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. Click HERE to purchase House of Cards for just $2.99.  Please "like" the book on Facebook and when you're done reading, leave a review.  Once purchased, you can lend the book to a friend using the new Amazon lending program. And you can download to lots of devices - iPhone, computer, Blackberry, Droid and more.

 

Holiday Hijinx! Kim Stagliano Presents House of Cards A Kat Cavicchio Mystery

House of Cards 200 pixelsI'm grinning from ear to ear: "It's a book!" House of Cards, a funny, fast paced romantic suspense is now available in e-book format. (Paperback in 2012.)  The book is pure fiction - not my life - been there, wrote the book (ha ha All I Can Handle the Memoir).   I hope that House of Cards will be another way to tell the world about the autism epidemic and what it does to an entire family - in a zany, fast paced chick lit style format. And well, I got to kill someone finally, and that ain't bad!

Click HERE to purchase House of Cards for just $2.99.  Please "like" the book on Facebook and when you're done reading, leave a review.  Once purchased, you can lend the book to a friend using the new Amazon lending program. And you can download to lots of devices - iPhone, computer, Blackberry, Droid and more.  You can find the Kindle Apps HERE.

Here's a taste:

My name is Kat Cavicchio, and I’m the youngest in a family of four kids. I call my sisters and brother “good, better and best.” You can see where that leaves me. I’m the only female in two generations to have been divorced. I had split with my college sweetheart at age twenty-eight after three “un” years with him. Unhappy. Unfaithful. Unreproductive (thank God.) I dumped every reminder of him possible, including his ludicrous last name—Sprenkle. What the hell was I thinking when I married him anyway? Kat Sprenkle. It sounded like a brand of kitty litter. 

Despite her liberal bent, my mother lived in fear that I’d never find another husband and would end up lonely and poor. You can take the Italian out of the old country, but blah, blah, blah.

My constant money woes troubled my father, who had never made a fortune as a college professor but had taken appropriate care of his finances, allowing us kids to have a happy childhood, and him and Mom a comfortable pre-retirement. I had a tendency to eat more meals in his kitchen than my own, which was all the proof he needed of my near-insolvency. He was concerned that I’d hit up my 401K money once my savings were gone. I was about six months shy of calling Fidelity. I’d have to put off quitting my job until another day, or decade, unless my next interview panned out.

With any luck (except my own), my days of writing press releases for Acme were coming to an end.  No more writing sentences like: “Acme Computer Systems seamlessly integrates high-level platforms, software, and services into high-value, low-risk information infrastructure solutions that help organizations maximize the value of their information assets and automate more of their overall infrastructure.”  Can anyone actually read a sentence like that without drifting into the ozone?

I was actively looking for a new job. How long can a girl dream up gobbledygook for dry-as-toast clients? In Boston, where I was born and raised, a huge chunk of the available biz was in the medical, biotech or software industries.

Continue reading "Holiday Hijinx! Kim Stagliano Presents House of Cards A Kat Cavicchio Mystery" »

Kim Stagliano's All I Can Handle I'm No Mother Teresa on Kindle Sale $1.99

Retro cheapHappy Holidays, friends! My book is on S-A-L-E on Kindle for All I Can Handle 50 pixel $1.99.Visit the Amazon Kindle Version All I Can Handle I'm No Mother Teresa to check it out - wait, that's a library term. If you have the KINDLE app you can download the book to your phone or other device.  If you're expecting a Kindle as a gift, you can buy the book and download it when the device arrives.

Limited sale, hurry!

The paperback just came out too - just $11.21  it contains a new chapter, recipes and a study/book club guide if paper is your thing: Go to  All I Can Handle I'm No Mother Teresa paperback.

Happy reading! KIM

(PS)  I have a really fun novel called House of Cards coming out as an Amazon e-book next week - I think you'll love it!

Autism Ain't Easy

Mia before regressionBy Kim Stagliano

Yesterday was my daughter's birthday.  We celebrated with cake and presents, like any other family.  She delighted in her Rudolph the Red Nosed Reindeer snow monster toy that shakes and sings Holly Jolly Christmas (another Stop & Shop present, and you know what I mean if you've read my book.)  She glanced at the Love's Baby Soft perfume set. We helped her open her cards from family.

She is seventeen years old. Here she is on the day she was born. I was two weeks away from my 31st birthday. A friend posed a question on Facebook last month, "If you could be anywhere at anytime of your life, where would you be?" My answer is in that photo. The moment Mia was born was the happiest of my life, bar none.

Mia's birthMia developed right on time.  She knew her alphabet before two. Could count to twenty. Looked at me with her big blue eyes.  I vaccinated her on schedule. I was never told a thing about the risks.  The consequences. It never occured to me I could be harming her, even as her pediatrician noted a distinct change in her head shape and made notes to "watch left side," but never told me or her Dad.  We found his notes in the pediatric records we ordered when we moved to a new city.  By two we knew we were losing her to something. By three we were in Early Intervention. By four she was diagnosed with autism.

When I was seventeeen I was a senior in high school. Mia is in "tenth" grade.  Friends and I giggled at this Rick James song - understanding the lyrics were a bit naughty.  I had a boyfriend, my driver's license and felt as grown up as could be, ah seventeen.



This morning, Mia was watching this before school.



Miss-spider-s-tea-party-for-the-iphone-ipod-touch-screenshot-1In grade school I read a book from the 1940s that has remained a fond memory. It was about a Seventeenth summer girl's first love, called Seventeeth Summer, by Maureen Daly. At age 10 or 11, 17 seemed so grown up to me. Mia is loving  a counting story called Miss Spider's Tea Party on the iPad.

Continue reading "Autism Ain't Easy" »

Matthew Sapolin, 1970 - 2011, New York City's Office for Disabled Commissioner

NAA AwardKatie Wright informed me yesterday that the Commissioner of the New York City Office for the Disabled Matthew Sapolin died this week. In 2010, NAA NYC Metro honored me with their Spirit of Hope award and Commissioner Sapolin presented the award, along with Sabeeha Rehmin. He actively sought to improve the lives of people living with autism in New York City. Our condolences to his family, friends and colleagues.

From The New York Times:  Matthew P. Sapolin, the Bloomberg administration’s disabilities commissioner, died of cancer on Tuesday. He was 41.

Mr. Sapolin, whose death was confirmed by the mayor’s office, had served as commissioner for the Mayor’s Office for People With Disabilities since the post was created in 2006. In that role, he pushed to make New York City’s building code more accommodating to people with disabilities, created a mentoring program and led an effort to freeze rents for some disabled New Yorkers.

Mr. Sapolin was also blind. Friends and colleagues said that while Mr. Sapolin’s blindness informed his life, it did not narrow it. He was an accomplished wrestler, a versatile musician, a formidable chess player and an occasional skier.

“His mother told him, you go to school and you’ll learn, and that’s it,” said Carol Robles-Román, deputy mayor for legal affairs. “You’re going to school with everybody else, and they’re going to treat you like everybody else.”

Mayor Michael R. Bloomberg appointed Mr. Sapolin executive director of the Office for People With Disabilities in 2002. Four years later, Mr. Bloomberg decided to elevate the job to the level of commissioner, and Mr. Sapolin rose with it.

At age 5, Mr. Sapolin lost his sight to bilateral retinoblastoma, a cancer that affects the optic nerve. Mr. Bloomberg’s office said he had battled cancer ever since, and it was that disease that killed him, a rare form called leiomyosarcoma.  Read the full obituary HERE.

Special Mall Hours for Families with Autistic Child: Is This Progress?

Frustration_ReliefBy Kim Stagliano

Before you jump down my throat - we have participated in sensory movies and other autism friendly events. I appreciate them. But - at what point will the larger world say, "Hey! How come this ONE population of disability is unable to participate in the general day to day world like everyone else?"  Why not "Down Syndrome Day at Sesame Place" or "Cerebral Palsy night at the Bridgeport Bluefish ball park?"  There's no "Jerry's Kids movie showing" at the local cinema.   

I'd like the media and average Joe and Jane  to realize that autism needs action, beyond it's own "Blue Friday shopping event." Autism is a dire financial, emotional, physical, medical and mental drain on families from coast to coast. We get precious little medical treatment, we're told that research into genetics might someday lead from mouse models to oh, say a primate! And then in 100 years, something for humans. We're asked to be patient as millions of dollars in research turn over the Elmo rock, the old sperm rock, the clever parents rock in a flim flam game that helps no one but those whose names are on the grant applications.  We watch our children grow into handsome and beautiful adults who can not function independently in society while awareness campaigns sugar coat reality into a thin gruel the nation is willing to digest.

I don't want more ambulances to triage the kids who are getting hit by the autism bus - I want a safe road with sidewalks so that no one gets hit at all.

I know that families need TLC and a mall event to visit Santa without the dirty looks and sneers from those who know nothing of our world.  If there was a Sensitive Santa night in our Westfield Mall I'd take the kids with pleasure and be grateful for the opportunity. But in the bigger picture, we need to keep shouting "FIRE! FIRE! FIRE!" so that another generation of kids isn't so badly affected by autism that the world is unaccessible and hostile to them.

Comment on the article below at TulsaWorld.

Christine McClary’s kids are terrified of the mall.

Jacob, who’s 8, and Emily, 7, don’t do well with all the sights and sounds of a shopping center, especially this bustling time of year.

“I can’t take them, ever,” McClary said. “It’s just because everything is over-stimulating.”

Both Jacob and Emily have been diagnosed with Autism Spectrum Disorder (ASD) - Jacob in 2005, Emily in 2006. Neither sibling can talk. Certain textures and colors upset them.

So sitting on Santa’s lap at the mall has never been an option - or, at least, it won’t be until this weekend, when Emily and Jacob will go to Tulsa Promenade for the shopping center’s second annual “Sensitive Santa” event from 8 to 11 a.m. Sunday.

Families who are affected by ASD are invited to the event, which caters to autistic children, allowing each an opportunity to enjoy a moment with Santa, as well as other kids, all in a sensory-friendly atmosphere - low lights, low music, no shoppers and a staff instructed to avoid loud, distracting movements.

Continue reading "Special Mall Hours for Families with Autistic Child: Is This Progress?" »

Clever Parents Autistic Kids?

Opticana-4It's one micron better than being called a cold refrigerator mother - Simon Baron-Cohen is again looking at Mom (and Dad) as causing their children's autism. Autism May Be Linked To Clever Parents. I thought we were stupid for believing our kids are physically sick and/or vaccine injured. And for attempting to recover our kids from a lifelong can't do a darn thing but ABA and LUV diagnosis. So which is it? Are we clever or are we ding dongs? And how do high IQ parents have children who can not provide basic care for themselves and whose IQ is almost untestable or so erratic as to shuffle them into DDS programs nationwide? Sorry, but the smart Mom and Dad hypothesis leaves me as cold as a Whirlpool side by side. Although Mr. Baron-Cohen is certainly clever in that his funding seems endless.  KS

There are signs that adults who work in science and maths-based jobs are more likely to have autistic children.

"A clear test of the hypothesis will enable us to test if couples who are both strong systemisers, for example, those who studied and works in STEM subjects (science, technology, engineerings and maths) and other fields related to systemising, are more likely to have a child with an autism spectrum diagnosis than couples where only one is a strong systemiser, or where neither is," he said.

The study will involve recruiting graduates to survey the development of their children along with the subject studied at university to test the theory, which has already been highlighted in other research.

The investigation will look at whether a couple of systemisers had a higher chance of having a child on the autistic spectrum.

Participants will be graduates with a child of 18 months or older.

More information is available online and the results will be available in 12 months.

Kim Stagliano on The Organic View with June Stoyer

Retro pink radioJune Stoyer of The Organic View on BlogTalk radio interviewed me last Monday for a full hour. We discussed the abuse Bella went through on the bus and how that story ends - as if it ever does, vaccination, finding joy even in dark moments and much more.  We laughed a lot too.  Many thanks to June for the thoughtful questions. Enjoy.  KIM

 

Listen to internet radio with The Organic View on Blog Talk Radio

Twenty Years Later

Wedding cakeMark and I are celebrating our 20th wedding anniversary today.  When I married Mark, little did I know I'd be finding my way toward a new family - all of you in the autism world.   You mean the world to me and my girls. Thank you.

(PS) I didn't know what gluten free meant when I cut into that cake....

 

 

All I Can Handle 50 pixel
Kim Stagliano is Managing Editor of Age of Autism, she writes for Autism File Magazine, HuffPo, TodayMoms and elsewhere. Her book All I Can Handle I'm No Mother Teresa is now available in paperback with bonus content, recipes and a book club/academic guide.  

Author Kim Stagliano All I Can Handle 10/17 by The Organic View | Blog Talk Radio

Radio micToday at 4pm EDT.

Author Kim Stagliano All I Can Handle 10/17 by The Organic View | Blog Talk Radio.

Adults with Autism Chained in Philly Basement

The adults in the story from PHILLY are not said to have autism - but this article got me to thinking of how little progress we are making in the autism world to prevent the landslide of impaired (yes, impaired) adults from falling into a world of decreased benefits, social apathy and continued insufficient medical care. While our sponsors work tirelessly on shoe string budgets to help families, the larger picture for autism in America is grim. KS

Ranch House

 

CafeMom The Stir Covers Combatting Autism Act: Stagliano Expresses Concerns

CafeMom-Stir-logo2 Read and comment at  "The Stir" on    Autism Research Funding Narrowly Saved, but It's Not Enough.

Here's an excerpt: "Kim Stagliano is the mother of three daughters with autism and a member of the Combating Autism Act Reauthorization Coalition. She said the funding provided by the act isn't used efficiently and she would have rather seen a shorter extension so that it could have been reworked and the money better spent.

"I can tell you that in the five years since CAA passed, we haven’t made an inch of progress in the battle, in large part because the NIH has become captured by a failed school of orthodox science in autism," she told The Stir. "In these austere times, reauthorizing a broken bill for three years doesn’t make sense. Instead, a one-year extension would allow time to rebuild the act to better meet the needs of American families facing the daunting challenges of autism in terms of adulthood and life care, treatment, and prevention."

Others see the act's reauthorization as a victory. But even with it, there are so many more battles ahead -- for families, for the government, and for the individuals with autism themselves that this act doesn't address. Autism isn't going away; it's becoming more prevalent, and we've got do more.

Will Government Deny Parental Healthcare Rights That Currently Exist?

Vaccine parental approval By Kim Stagliano

Yesterday my oldest daughter had a high school doctor's office"well visit." I think the teen year visits are a bit of a waste. If there's something wrong, I'd schedule an appointment. However, I can play the "blue form" game as well as the next parent, so off we went.  I'm happy to keep a good relationship with my pediatrician, who is very helpful in many areas.  Huh? Did Kim just say she needs her pediatrician?  Well, yes!   She has ordered podiatric visits, blood work for PANDAS and many other tests, dermatology appointments and more for us.  And she's the insurance gatekeeper.  Plus, while I can keep my girls healthy vis a vis diet and environmental exposures - I can't tell if their hearts go flippy floppy or an organ becomes swollen.

So the visit proceeded: Vision test? Wouldn't look in the device. Blood pressure. Normal. Height and weight? Yes, she has both. Ears? Waxy. Nose? Snotty. Eyes? Gorgeous. Mouth? Clamped shut tighter than Scrooge's wallet on December 23rd.

Then we came to, it... "Vaccines?" asked the nurse practitioner. "No thank you," said I.  And that was that. I left with a happy, healthy child and a signed form. No angst. No battle. No animosity.

I provided some quotes for an article by Kaiser earlier this week - I doubt they will run them. I wasn't strident or "anti-vaccine," I was, well, Kim. Just a parent trying to do her best for her kids, like all of us.

While we were waiting for the blue form, I noticed an announcement on the wall (see photo.) Our practice will not adminster a vaccine without a parent present. As you know, AB499 in California is pushing to remove parental consent for the HPV shot called Gardasil. We're hoping that doesn't happen. It will be a blessing for Merck, but honestly, do we want to remove parents from the healthcare equation? I sure don't.   Please  email CA Governor Jerry Brown with your opinion on AB499:

All I Can Handle Small Kim Stagliano is Managing Editor of Age of Autism. Her book from Skyhorse Publishing, All I Can Handle I'm No Mother Teresa; A Life Raising Three Daughters with Autism is available now. Visit her website at Kim Stagliano.

Lack of Preparedness of Autism Abounds: FL Charter School Removes Child in 1 Day

Misfitdoll I've been talking to parents and DDS management and caregivers about the dearth of programs in place ready to handle the behavioral challenges of autism. Group home? How does a boy who punches out windows live in one? Work at a grocery store? How does a girl who bites and hits work near customers? All roads lead to treatment and then prevention.  Even among misfits we're misfits. And that's painful to admit.  And likely to land me in hot water - heck, throw me a tea bag and we'll call me Oolong. For parents whose kids have behaviors like biting, hitting, kicking - how and where do we find help to curtail those behaviors? In a six year old they are barely tolerable - in a 26 year old they may be life threatening due to chemical and physical restraint.   It's a grim picture. As we say on Twitter, #feelautismyet?  KS 

Read the full story of  a girl named Natalie who was asked to leave a charter school for behaviorally challenged kids in ONE day. To be fair, we don't know if the child was a right fit for the school, though one would hope that there had been meetings and introductions and an honest appraisal of "behaviors" from Mom and/or Dad to the staff.  Perhaps we'll learn more in a future article. In the meantime, read the  Orlando Sentinel for the full article. Excerpt below.

Kerlin Fedee thought she had found the perfect fit for her daughter — a school dedicated to the needs of young children with behavioral problems.

"They said they would be able to help her and would love to have her," Fedee said.

But Fedee was disillusioned quickly. Aspire Charter Academy in Orlando, which opened this fall, kicked out 6-year-old Natalie Querette on the first day.

Natalie, a first grader, sometimes bites, kicks and spits, especially in a new situation. She has autism and attention deficit hyperactivity disorder.

Will I Have a Second Child with Autism? A Third? Kim Stagliano on Huffington Post

Els Family Hi, friends. I have a new post up at HuffPo - a different take on the Pedatrics study on siblings. As always, I'd appreciate if you'd pop over to HuffPo and and leave a comment. Then FB share and Tweet the post. Here's the start of the post: Thanks. KS

A new study in Pediatrics says the recurrence risk of autism in younger siblings is higher than previously thought. Hardly comforting to autism families who want a second or third child and not surprising to me, mom of three daughters with autism.

In 1999, my husband and I were considering having a third child. Mia and Gianna (4 and 3 years old at the time) had just been diagnosed with autism. Mark and I wanted answers. At the advice of our pediatrician, we sought genetic counseling. The geneticist at a top children's hospital said the chance of a third child with autism was perhaps 25 percent. He told us it was, at best, a guess. New Year's Eve 1999 arrived, we partied per the Prince song, and nine months later Bella arrived with a birth history that may have lead to her autism diagnosis.

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