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296 posts categorized "Kim Stagliano"

State Pharm to Insure Everyone Regardless of Health, Slash Premiums!

State PharmBy Kim Stagliano

We're excited to report the latest news from State Pharm insurance - like a good neighbor, they are eliminating all actuarial tables, all statistics, all facts on age, sex, health and will offer insurance to anyone, everyone

Yes, my fellow Americans - State Pharm now realizes that risk is simply an outdated concept.

You're 67, smoke three packs a day, have two stents and have already had one leg amputated because of diabetes? How's about $500,000 of term life insurance for just $256.00 a year, Bunky! Your premium will never go up and you're covered until 2099!  Plus, "Jake" will come make you hot coffee every day for a month, and make your bed!

You're 36 and parachute out of a 1924 bi-plane after three hours of wine tasting in Sonoma every weekend? Sign on the dotted line for $1,000,000 in term life for just $187.50! State Pharm will throw in a trucker cap, can cozie and a polar fleece blanket for those chilly winter nights as your special gift.

Nothing will go wrong. No one will get hurt. Everything in America is safe, and should not be questioned.

So hurry up and call your local agent NOW.   Call before November 1st and State Pharm will offer you a discounted ticket to Pamploma for the running of the bulls and one of their nifty red shirts. Hey, they ARE a good neighbor.

###

We support Rob Schneider, who was terminated from the new and very funny and endearing State Farm insurance ads, reprising his "Copy Boy" character from SNL for having spoken up on the topic of healthcare choice as it relates to vaccines. When I first saw the ad I ran to the TV and smiled. Now? Well, there goes the neighborhood.... Here's a detailed report:

From NSNBC International - Hollywood actor Rob Schneider got first-hand experience about the fact that corporate capitalism is not democracy and that publicly raising concerns about vaccine safety and efficacy issues results in a swift lesson about the fact that freedom of speech is a right that is mitigated by the fact that one’s livelihood and income may be threatened by addressing issues of concern for a multi-billion dollar per year vaccine industry.

Freedom of Speech exists in these United States. That is, if one can afford Unemployment...  Read more


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.

Bay Village Teens Channel Stephen King Horror: Abuse Student with Autism

By Kim Stagliano

With horror and a sickening flashback to a Stephen King novel (and film by the same name) I watched the Bay Village Ohio teens play a terrible "prank" on a student with autism, using the ALS Ice Bucket Challenge as their "medium." (See below.)




As the epidemic of children with autism grows older, I fear they are in more danger than ever. Toddlers are naturally protected by most all mothers, not just their own.   The "it takes a village" method of child rearing, one could say. Which of us would not run to the aid of almost any child under the age 12, 13, even 16? Ah, but as our children turn into adults, that coccoon of safety becomes eroded. Cute faces have pimples. Chubbie tummies change into burgeoning figures. 

I'm in the position of having three teen daughters with autism. You want to talk about paralyzing fear for them?  Pour a cup of coffee and we'll chat - for six months.   Already one of my girls has been criminally abused (school bus, 2010.) And yet, like parents of typicals, we have to find a way to let our kids grow up and move forward.  We fight our own instincts to protect our vulnerable children, and force ourselves to "let them go" a bit and learn about the world.  But for the love of all that is holy, NOT this way.

Bay Village, Ohio has an opportunity to set an example for ALL villages.  As of this writing, police are considering arresting the teens.


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.

Where Is Your Child with Autism Going to Live as An Adult?

Future shockBy Kim Stagliano

Where Is Your Child with Autism Going to Live as An Adult? Thought about it yet? I sure do. Oh, I joke in my usual fashion, when speaking to groups, "Ha ha! We ARE a group home!" (My three girls have autism, in case you're new here. Oh, and welcome.)   My oldest is 19. My youngest is 13. These questions are not far off for us - where will my girls live as adults. With their Dad and me?  I've said that we'll have a big house with a special ed wing and an elderly wing and the caregivers can toss a coin to see whom they care for first.  Aren't I funny?   I don't think so either.  What if they don't want to live with us forever?  What if three grown women want independence in their fashion? They deserve that. 

Our sponsor VOR (Vee-Oh-Are) is working to protect YOUR right to decide what is the best living option for your adult child with autism.  For some, it might be a group home or even a larger style living situation that could be referred to an an "institution." For others, it might be a community of similar people where routine and sameness matter. Where ever, however - it should be yours to decide.

I ask you to please formally join VOR so that as your child ages, you can keep abreast of the government's misguided policies so that you aren't shocked to death when the time comes.  Because as you know, we are not allowed to die.

Like VOR on Facebook here too please. Thanks.


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.

Jim Rockford's Message: Stand Up For What's Right

Garner

By Kim Stagliano

When actor James Garner decided to help organize and attend the March on Washington in 1963, he wasn’t just listening to his conscience. He and other actors who attended may have been embarking on Hollywood’s first large-scale political act since the days of McCarthyism and Hollywood’s anti-Communist blacklist. http://www.washingtonpost.com/news/morning-mix/wp/2014/07/21/james-garners-legacy-a-commitment-to-civil-rights-and-political-activism/

I love this article about James Garner. What have you done in your life - to go against the grain for RFK Thimerosal Book what is right? For me? It's talking about vaccine injury and autism. That has meant being called "Anti-vaccine" and an "American Loon" and derided in the media (anyone remember my name splashed across the front page of the Chicago Trib for feeding my girls "toxic waste products" courtesy of Trine Tsouderos? Miss cupcake reviewer turned "science" beat writer?) I am proud to make people uncomfortable. Just as I am proud to support Skyhorse Publishing, Robert F. Kennedy Jr, Dr. Martha Herbert and Dr. Mark Hyman and the new book Thimerosal: Let The Science Speak.

As I type, there is an ad by the State of New York running on NBC 4 featuring a man desperately trying to breath as he coughs, clearly in agony. This is an acceptable way to tell people that smoking is dangerous. But if I, we, dare try to tell anyone what vaccines did to our kids?  We're as welcome as lung cancer. 

Continue reading "Jim Rockford's Message: Stand Up For What's Right" »

18 Years, 12.5 Micrograms, 1 Birthday Girl

By Kim Stagliano

Today we celebrate my middle daughter's 18th birthday. She is beautiful. Funny. Bright. Anxious. Vaccine injured. Autistic.  

image from http://s3.amazonaws.com/hires.aviary.com/k/mr6i2hifk4wxt1dp/14071017/ad67d722-8495-4f73-9a7c-f5726d877439.pngGianna had been "ex utero" fewer than 24 hours before a nurse at Doylestown Hopsital injected her with a vaccine for the sexually transmitted disease Hepatitis B.  A disease I did not have.  That vaccine had 12.5 mcg of mercury in it. I had opted for natural childbirth so as not to put a single chemical into my infant. And then I signed a piece of paper authorizing that toxic vaccine. I gave my consent, but it sure wasn't informed consent. I have the paper in a file.

Gianna's Apgar scores were high. She nursed within moments of birth. She slept. By the time we brought her home she was screaming a high pitched cry. She could nurse, but her mouth worked "funny." I called LaLeche so many times - she was biting me raw. Gnawing at me with an underbite that did not exist during her first feedings. I bled every time she nursed for months.  When I read the infant primate study my jaw dropped. Baby primates lost their ability to suck after birth dose Hep B. So did my baby human.

Continue reading "18 Years, 12.5 Micrograms, 1 Birthday Girl" »

Autism Employment Discrimination Echoes the Irish NINA

NINA

By Kim Stagliano

I was born in Boston, Massachusetts.  My Grandmother Hannah Veronica Sullivan was born in Boston, of parents from County Cork, Ireland.  My father was born in 1922, and tells tales of discrimination from "the old days" that, well, you've seen my hair, right?   We've come a long way from the outright posting of who can apply for a job, or use a restroom. Or have we?  This line (below) is from an article Help Wanted Adults with Autism  that addresses the serious dearth of jobs for people with autism.    It seeks to offer a bright side by sharing internships that are available through a program called Project Search under the leadership of Dr. David Kuhn Clinical Director at NewYork-Presbyterian Center for Autism and the Developing Brain, - it seems which "county" of autism you live in makes a difference, however.

Interns range in age from 18 to 21 years old. They must have a diagnosis of an autism spectrum disorder, have no violent tendencies, be able to communicate and follow a one to two step schedule.

Almost every person I know with full autism has behaviors, some are aggressive and may be viewed as violent, some seriously aggressive and definitely violent and well, that communication thing? It's the foundation of an autism diagnosis.  And you know what (of course you do, dear AofA readers) sometimes that aggression IS communication. As fas as I'm concerned, this posting is asking for people perhaps with Asperger's (there can be serious behaviors among this population) and maybe -  maybe "brushed" with autism like symptoms. None of my daughters could apply. Could your loved one with autism or Asperger's apply?

Last week I wrote about a vocational opportunity for my oldest daughter, who is starting her post-graduate years within our school district.  The more fully impaired with autism also deserve to work in meaningful jobs that take advantage of their sharp minds, unique processing ability and perseverance to a task while repsecting that yes, there are behaviors and communication deficits. Is this going to happen or not? Or will NINA be reborn as "NAWB" become the new discrimination?


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.

The Future's So Bright... I Might Have to Wear Shades.

Giggling Pig Mia and Hannah

By Kim Stagliano

This is my daughter Mia. She is 19 years old and just finished her fourth year of high school.  Next Fall she starts in a new program within our district called Trac21.  This is a pilot program, the first in our area outside of private autism schools, to serve the autism population in their "gap" years between traditional secondary school and aging out at age 22. 

Our Special Education department recognized early on that the "regular ed special ed" post grad program, called "Elite" in our town, was not going to work for the autism population. (Yet another example of the newness of the epidemic in the last twenty or so years. There are almost no housing or work programs specific to autusm.) First off, it is an itinerant program. The students meet in different locations every day of the week. Second, it is primarily vocational in focus with emphasis on the job sites where you usually see people with disabilities, like stocking shelves at retail and working in a grocery store.  

I was on a committee that ate Dunkin Munchkins and drank coffee for two solid years in an effort to find a site  for Trac21, plan vocational locations and craft a meaningful day for the two students who would be part of the 2015 school year. 23 months into planning, we had a pilot program. Mia will have almost a full school day, with academics in the morning, vocational work, life skills training and the familiarity of a room within the high school near friends and staff she already knows and trusts. Overall, I'm pleased. 

Continue reading "The Future's So Bright... I Might Have to Wear Shades." »

The Perfectly Imperfect Family

Kim summer headshot 2014By Kim Stagliano

Wednesday, 6:28pm

I just fed my family dinner. My husband is doing the dishes. Mia is laughing and making stimmy sounds to an old Sesame Street CD-ROM from the year 2001. Oh, the CD-ROM does not play in our current computer - in fact, we no longer have any of the old Sony Sesame Street CD-ROM computer games. Mia found her old friend Elmo on You Tube and she is watching another person play the games.  She is wearing her evening attire. Black yoga pants and a black T-shirt. She changes into this outfit each day, after wearing her blue jeans (got her into shorts today after weeks of work) and a pink shirt. Pink. Not lavender. She's no dummy. I tried telling her it was "purple pink." No soap.

She's happy.

Gianna is pacing back and forth in the family room near Mia. Always near Mia. This room is open to our kitchen, and my office is a corner office. Corner of the  dining area of our kitchen.  She is holding her iTouch and a blue rubber duckie. In the background are the sounds of running water and clanking pans, NY Channel 4 news, Mia's voice, and Pink Floyd's Breathe - playing behind my log-in screen on Gianna's log-in on my computer (there goes the helicopter sound) as part of a series of  PBS BoohBah videos that have been set to all manner of musical tastes. Miss G loves music. And Pink Floyd.  And Sammla Mammas Manna Mix. And Dimmu Booghir.

She's happy.




Bella is upstairs watching Sesame Street Count With Me seated next to he ooccupational therapy steam roller device in her room.  There is every chance she is naked.

She's happy.

Why am I giving you a blow by blow of my household? My unusual household filled with autism and stims and communication deficits and sleepless nights and 24/7/365 work for Mark and me?  My home full of fear for the future (my 19 year old "graduates this week.) Why?

Because across town, right now, is the wake of a 15 year old cheerleader from our high school. A perky, blonde "perfect" kid from the cheer bow in her hair to her bouncy toes.

She committed suicide in her home last weekend.

She was 15 years old.

There is no perfect kid. Ever. We love our children as they are - we try to help them in every way possible. I do for my girls. You do for your children. And I know that AA's heart-broken parents did for the same for their child.

Continue reading "The Perfectly Imperfect Family" »

Summertime and the (Autism) Living is Queasy

Kids pool no faces


By Kim Stagliano

I hate to be a Debbie Drowner, but I'm going to send out this reminder that our kids are so terribly vulnerable to death by drowning. There are too many children, from tiny tots to teens, who have lost their lives to a watery grave.

Please share your ideas on safety - do you go to a town pool? Do you have a backyard pool? Does your child wander or bolt?

In 2008 we rented a house in town with an in-ground pool that had a properly securing safety fence around it. Truth be told, it was the best summer of our lives.  What a luxury to have our own pool at our disposal. I did not have to worry about behaviors or even the sudden skinnydipping predicament (cute at home, not so much at the town pool). And the pool became a social tool.  The photo above is from Gianna's 12th birthday party. I invited lots of the girls' typical and autism peers and even my husband's and my friends were eager to join us for a dip. I'd love another home with a pool.

That said, the dangers are so very real for our children.  If your child is at a camp of any sort, or might swim somewhere during Extended School Year programming - please make sure the staff is constantly "eyes on arms length" and fully vigilant. Explain to family members who are not used to our level of alertness that even 1 minute can be the difference between life and death. 

A teen drowned in LA earlier this month.  The first story among the many I anticipate this summer.  Let's all work to prevent DBA - "Drowning By Autism."

Marco.....


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.

New Study Links Autism & Violence: Parents Dismayed

Protect childrenBy Kim Stagliano

Major media including The Washington Post, picked up a story about a study that found ‘Significant’ statistical link between mass murder and autism, brain."

Needless to say, those of us with sons and daughters on the spectrum are appalled, dismayed and angry at the facile reporting.   Adam Lanza, the young man who shot 26 children and school staff just 15 miles north of my home was the focus of the article.  The media, never one to get caught up in details, uses "autism" and "Asperger's" interchangeably, rather like Southerners are known to call carbonated beverages "Coke." Dan Olmsted took a hard look at Lanza's history, his father's own words and based on diagnostic criteria and he reported on Age of Autism:

Here’s the key part: “Adam Lanza was never typical. Born in 1992, he didn’t speak until he was three, and he always understood many more words than he could muster.”

Well, if he didn’t speak until he was three, he didn’t have Asperger’s. Straight from my hefty copy of DSM-IV, retrieved from the box in the garage: “In contrast to Autistic Disorder, there are no clinically significant delays in language (e.g., single words are used by age 2 years, communicative phrases are used by age 3 years).”

It seems that in 2014 autism is either a quirky difference that makes for smart, technically proficient inventors who just have a brain difference or mentally ill killing machines.

Some choice.

Like most bell curves (yes, I took statistics in college) the tails do not wag the bell.

After the Virginia Tech shooting the media picked up the scent of autism and rumors started that Cho was autistic. I immediately wrote a Huffington Post piece called You Can Call Me Angry, Just Don't Call Him Autistic

Continue reading "New Study Links Autism & Violence: Parents Dismayed" »

VOR Speaks Out About National Crisis: A Lack of Choice, Quality and True Person-Centered Care For The Disabled

Kim  Speaking Austin ChariManaging Editor's Note: I'd love to meet AofA readers at the VOR National Conference dinner on Sunday, June 8 at the beautiful Hyatt Regency in Washginton DC.  I have the great pleasure of being the dinner speaker. The event spans several days, includes panels, speakers and a chance to engage in Congressional advocacy during the week.  Imagine face to face meetings with your Congressional leaders to tell them what YOUR CHILD will need for a safe and meaningful future - as opposed to what neurodiversity advocates and national agencies who smell M-O-N-E-Y in our kids want.  Learn more and register HERE. Kim

Elk Grove Village, IL

Across the country, tens of thousands of individuals with developmental disabilities, including autism, are suffering due to lack of access to appropriate care and services.

The numbers representing present and future need are alarming.  Almost all states have waitlists VOR logo sidebar for accessing adult support services, with more than 280,000 individuals with developmental disabilities, including autism, going without necessary care in 2013.  Almost one million individuals with developmental disabilities, including autism, are still living with caregivers over the age of 60.  In the next decade, over 800,000 on the autism spectrum will transition to adulthood.

So where do we go from here?

For 30 years, VOR,  a national nonprofit organization, has advocated for high quality care and human rights for people with intellectual and developmental disabilities.  VOR is the only national organization calling into question the impact of decades-long state and federal deinstitutionalization that continues in earnest, especially in light of current unmet needs already in the community.

“Individuals with profound intellectual and developmental disabilities or autism have significant care needs,” Julie Huso, Executive Director commented. “The impact of going without adequate care is felt equally by the individuals and their family caregivers.”

In 2013, there were 280,000 people with developmental disabilities, including autism, who were waiting for services.  VOR has carried these concerns to all levels of government, including the White House and Congress, and has recently joined forces with a group calling itself the Coalition of Community Choice, a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers to advance the principle that community can be experienced in all residential settings.  VOR believes that true community is a concept not limited to any particular residential settings.

Continue reading "VOR Speaks Out About National Crisis: A Lack of Choice, Quality and True Person-Centered Care For The Disabled" »

Autism's Blue Days of April

Blue fluNote: I wrote this post for HuffPo and they declined it. Writers don't often share their rejections, but it seems appropriate to mention that fact. This post was meant to educate and, I hope, move us forward. April stunk.

By Kim Stagliano

April was autism action/awareness month. It's a designation that doesn't change much of anything except that famous landmarks glow in a blue light and proclamations are made about awareness around the world. There are hot tempers and strong opinions on just about every aspect of autism from whether it's a disability or not, to schooling, to medications and treatment, to the need for special inclusion events like movies and amusement park passes.

And then there was.... "The Hate Debate."

On April 15, Megan, a degreed-lawyer-naturopath-military-wife-of-a-physician-power-yoga-instructor-mother-to-4-blogger who runs the site LivingWhole.org summed up the bullying in a post she called, "The Hate Debate."

I am sick of it - this vaccination debate. My convictions not to vaccinate have been firm for six years now and I was comfortable living a low-profile life and letting other more notable activists carry the torch; and then I started seeing misleading t.v. interviews, news stories, and backlash against parents and unvaccinated children. I saw reputable medical professionals get crucified and reputations destroyed for questioning the mainstream norm. This isn't a vaccination debate, it's a hate debate, so let's call it what it is. And when it got personal, I got involved.

She had to pull down her site for a short period, to the delight of those who were bullying her. Here are just two comments she received - along with vicious threats that arrived quite literally on her doorstep if you can image the audacity and sheer terror of that.

"Please kill yourself. Thank you for misleading people with your carefully thought out bullshit.

Kill yourself immediately if you believe anything you wrote about vaccinations. "You are selfish, ignorant, foolish and myopic. You're an unfit parent and a menance [sic] to society."


A similar hate debate took place over a Chili's Restaurant fundraising campaign to benefit The National Autism Association, an organization whose Big Red Safety Box is helping to keep people with autism safe from death by wandering and bring peace of mind to beleaguered families. A vociferous social media campaign castigating NAA by people who likely hadn't the foggiest idea about their efforts on behalf of families facing the challenges of autism lead to Chili's cancelling the fundraising effort just 24 hours before the start date.

Now everyone out there knows that social media makes people forget their manners and push the boundaries of decorum but the carnage-by-comment assault attack on autism that seems to have gripped the nation is beyond anything I've seen in my 10+ years writing.

Continue reading "Autism's Blue Days of April" »

Shut Them Down! Rotenberg Center Burns Student with "Shock" Treatment.

WeepBy Kim Stagliano

My God... In this week after Passover and Easter, "'Eloi, Eloi, lema sabachthani?

Please take a look at this petition to SHUT DOWN the barbaric Rotenberg Center in Massachusetts.  This "school" (and Abu Graib is a summer camp) uses electric shock as a behavioral treatment. Painful, aversive, out of date, last ditch, aw who cares it's just mentally disturbed kids and autistic kids who are probably in the last place on earth that will take them electric shock.   Yes, Massachusetts (which happens to be my homestate) the ultra-liberal blue state where anything goes - except medical rights and freedom and respect and decency for children and their families.   The state where Justina Pelletier languishes in DCF after having been taken from her family by Children's of Boston.  

Here is the start of the petition by a former teacher's aide at Rotenberg.  As an aside, my Dad, now 91 years of age, played golf with Judge Ernie Rotenberg back in the 60s and 70s. And rumor has it, the Judge was a lot like Judge Smails - he used a "footwedge" to boost his scores.  His wife Gladys died just last year, her service held at the Synagogue in the town where I grew up.  The dichotomy, or irony (which seems too glib a word to suffice here) of this school having been named after a Jewish man - a school that tortures and maims as viciously as any concentration camp as far as I can see, is as vivid as the burns on the boy's body.

That any student remains there speaks to the tragedy of mental health and autism care for teens and children. There are so few good choices. NO ONE KNOWS WHAT TO DO! For the Alex Spourdalakis's, the Sky Walker's, kids who need care and medical treatment - not torture, the Rotenberg Center should be closed down for cheating children out of their very lives - it is barbaric and inhumane.  NOW. 

The video is disturbing, please be aware.  Kim

I deeply regret having worked as a teacher’s assistant at The Judge Rotenberg Center (JRC), a “special needs school” in Canton, Massachusetts, where children and teenagers with autism and other disabilities are administered electric shocks as a means of controlling their behaviors.  

I joined the JRC because I thought I would be helping these special needs students.  But it became clear that this practice was painful, traumatic, and more harmful than good. I never would have used these "GED" shock devices had JRC not told me and other staff in training that the GEDs had been “approved by the FDA”.  When asking an administrator about the severe thick and bloodied scabby injuries all over students' bodies, I was told that these machines had been tested and were “proven to be safe” as necessary to get FDA approval.  I did not know until 2012 that this was a lie!

Continue reading "Shut Them Down! Rotenberg Center Burns Student with "Shock" Treatment." »

FREE Autism Telesummit Featuring Temple Grandin, Julie Matthews, Kim Stagliano & More Experts!

15-experts-20141
FREE Telesummit!


TODAY!!!!!  4/7/14

Hi, AofA'ers, Kim here!  I hope you will consider logging  into this fantastic telesummit featuring 15 experts including  Soma Mukhopadhyay of HALO - the Rapid Prompt method (featured in a beautiful parent report story on AofA) Temple Grandin, Julie Matthews, of Nourishing Hope, yours truly and just look at the list above!   Tackle diet, behavior, communication, medical treatment, alternative treatments and so much more! It's FREE and available for 48 hours if you can't listen LIVE - plus you can purchase the teleseminar after the fact if you would like. 

Register for the FREE Telesummit with Kim Stagliano

Retro phone fashion hats
Brain food telesummit!

Thanks:

This Telesummit is for you if you know that more is possible for your child but need some encouragement and solid info to figure out HOW to help your child make the next leap in his or her development.

Imagine your child…

  • Having a healthy digestive system and improved immunity.
  • Experiencing more physical comfort in his/her everyday life.
  • Overcoming his/her challenging eating habits.
  • Having fewer episodes of hitting/biting/head banging and temper tantrums.
  • Breaking through communication barriers so s/he can more fully understand and be understood.
  • Deepening his relationship with you, family members and peers.
  • Fully engaging in games with you and his/her peers.

Plus, imagine knowing how to best take care of YOU so you can be most effective in helping your child and experience more energy and joy in your life.

Continue reading "FREE Autism Telesummit Featuring Temple Grandin, Julie Matthews, Kim Stagliano & More Experts!" »

Blue Hospital Hats for Autism

Broken blue light bulb
During this "Autism Awareness Month" we are bringing back a few old posts - that show the stark reality of autism. The side rarely seen under the glow of the blue lights that overtake this month. We show this NOT to denigrate or belittle.  We show this because in America, a single plane with 239 people on board gets weeks of media scrutiny and attention.  Family members are praised for all but rioting for answers that we we are told they richly deserve. (And they deserve answers.) At the same time,  tens of thousands of families have had their lives changed and children altered  by autism - and we are told to sit down and SHUT UP.  Not likely.  This post ran in January, 2014. 

Keith Dental ExamBy Kim Stagliano

I was scrolling down my Facebook wall earlier this week when this photo caught my attention.

This is Keith, a young adult with autism, and son of my friend Crystal S.  I asked her if I could share this glimpse into the version of autism often (purposefully) overlooked by self-advocates and the general media alike. While Keith himself is a handsome guy,  his autism is considered kind of ugly by those who only want you to see shiny, happy fairy tales. 

So... What is happening to Keith.

Is he having heart surgery?
No.

Is he having his appendix removed?

No.

Continue reading "Blue Hospital Hats for Autism" »

Are You a Savvy Auntie? Kim Stagliano Shares Autism Action for Aunts.

Savvy Auntie

Managing Editor's Note:  I'm honored each April to write a post for a terrific website called "Savvy Auntie" which, as you can see by it's clever name, is a site for Aunts.  I'm an Aunt to seven children. And my children have 5 aunts.  Growing up, my Auntie Rosie was like a second Mom to me - and she still is a good friend and confidante, into her 80s. Here's to savvy aunties everywhere! Please comment at the Savvy Auntie site, won't you?  Thanks!  KS

By Kim Stagliano

Hi Aunties, I'm Kim Stagliano: writer, speaker, blogger and Mom to three teen daughters with full autism. April has become the month designated for autism awareness. I hate it and so should you.

(Savvy Aunties scratching their heads: "What did she just say?")

Oh, I said it alright. April with its barrage of blue lit buildings and blue light bulbs for sale at that orange home improvement retailer makes me feel bl -- no, that phrase won't work. It makes me see RED. Instead of asking you to "Light it up Blue" I am asking you to Light it up "TRUE.”

In March, the CDC came out with frightening new autism prevalence rate of 1 in 68 American children based on children born in 2002 and counted in 2012. When I first started blogging about autism the rate was 1 in 188. Then 1 in 150. 1 in 110. 1 in 88. And today? 1 in 68.

Awareness has always been and continues to be a cop-out in my mind. It's easy to be aware. Awareness is passive...  Read the full post and comment at Savvy Auntie.


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.

World Autism Day Redux: Commemorate Don't Celebrate

Girls easter
Managing Editor's Note:  You know, this "Autism Awareness Month" is getting so easy! All we have to do is run previous years' posts since NOTHING changes! Well, almost nothing. The numbers keep rising so we have even MORE autism to be aware of this year than last! A is for AUSOME!!!!   I still say - I will commemorate autism - I can't celebrate it.  I'll celebrate my kids forever. Their life threatening diagnosis?  Nope.   This post ran last April 1, 2013.

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.

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.

New CDC Numbers Coming Tomorrow

47724666

by Kim Stagliano from a FB post

... and the rates are continuing to rise.

How many more American children will have their lives - their families' lives radically changed by autism? Autism is a tough road - no matter how "affected." It changes everything in the same way that Alzheimer's does - think I'm kidding? I'm not. We need TREATMENT, LIFE CARE for those here and PREVENTION for those to follow. We can NOT have American children taken out of the employment pool and thrust into the social services pool at the continually growing rate. The umemployment rate for Asperger's is dangerously high too - don't be lulled into a false sense of security by anecdotes. By one or two celebs. It's DAMN HARD to navigate the neurotypical world for a person on the spectrum - and I say that NOT to denigrate for a moment. All the BLUE LIGHTS in the world mean nothing. We need ACTION. Not awareness. God help us all.

Kim - exhausted beyond human endurance by autism.

Autism Speaks and Avonte. Open Barn Door. Smack Cow on Ass. Buy Door Alarms.

Light it up marie antioinette autism speaks A Gamondes


This week Liz Feld of Autism Speaks appeared on Katie Couric to talk about Avonte Oquendo's wandering, disappearance and death. This precious boy, a mother's son,  died in The East River. I don't know if Avonte could swim or not. But if you fall into a large body of water in the chill of a New York October (he eloped from school due to lack of proper supervision on Friday, October 4) swimming is kind of the least of your worries.  Michael Phelps probably would not have survived the fall, the splash, the panic and then trying to find a safe place to get OUT of the river. Note - this was not the pool at the Harvard Club, it was the dark, murky East River. 

Autism Speaks is backing swimming lessons for our children. Really? After months of Avonte's disappearance - some folks affiliated with AS put together a terrific reward for his return - and that was great - but swimming lessons?  THAT'S their response? 

Our Contributing Editor Tim Welsh Tweeted:

TannersDad Tim @TannersDad
40+ children die from wandering in the last couple of years and no sense of urgency to deal with Autism. Swimming lessons? really no really?

TannersDad Tim @TannersDad
@LizFeld_AS @katiecouric Swimming Lessons?

And our Contributing Editor Adriana Gamondes created the Marie Antoinette graphic meme to show the disconnect of the effort.

I've often said Autism Speaks' role for the community - the flesh and blood people dealing with the challenges of autism - is akin to watching our kids get killed crossing a highway and instead of building fences to protect them, Autism Speaks raises funds on the backs of the very same families to purchase Mercedes Benz ambulances to whisk the kids off to their own hospitals.   The cow has left the barn, so to speak.




What is Love? Autism Style.

Valentines givinggreetings_1987_250373By Kim Stagliano

So here we are - Valentine's Day 2014.   I don't know about you, but I'm bit cynical this year. We have eleventy inches of snow on the ground. Have had more snow days here in CT than Carter's has pills (Google it, kids) and frankly, the only LOVE I feel right now is for the yellow school bus as it approaches my house. My kids are fried, their schedules destroyed by the weather.  Then I remembered this video from SNL. And I laughed. Laughter is the best medicine after all.



Valentine MugMy girls are in middle and high school. No more Valentine's parties at school - thank God. How many tons of red dye laden crap have I tossed over the years?  We will celebrate with cards and a homemade treat.  Love here means hard work for the most part. Constant vigilance (Harry Potter reference.) Thinking and formulating plans to make sure the girls are safe, protected, content. Educating other people over and over. What to do. What NOT to do. There is precious little time or energy for traditional Valentine shenanigans. That's the price we pay when we assume responsibility for our children.  But there's plenty of love here. There's always love.

What does your Valentine's Day look like? Anything you remember from your own childhood? Or in the BA days?  (Before Autism, if you can even remember that far back.) I made that mug for my husband before the girls were diagnosed. We've kept it as a reminder of....

Here's to plenty of chocolate, a glass of wine, some flowers perhaps and love. Even autism-style.

KRS


House of Cards 200 pixelsKim 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.

 

Hidden Costs of Autism: Fighting Tooth and Nail for Realistic View

Keith Dental ExamBy Kim Stagliano

I was scrolling down my Facebook wall earlier this week when this photo caught my attention.

This is Keith, a young adult with autism, and son of my friend Crystal S.  I asked her if I could share this glimpse into the version of autism often (purposefully) overlooked by self-advocates and the general media alike. While Keith himself is a handsome guy,  his autism is considered kind of ugly by those who only want you to see shiny, happy fairy tales. 

So... What is happening to Keith.

Is he having heart surgery?
No.

Is he having his appendix removed?

No.


Keith is settled into a hospital for a dental appointment. That's right. Anesthesia, a day off for Mom who is a behavioral consultant and in school to become a certified teacher, and then recovery. For basic dental work.

Imagine the anxiety for Keith.

Imagine the lost work hours for Mom.

Imagine the juggling of other children - to get them to school.

Imagine the cost.

This is autism - and there are tens of thousands of Keiths growing older every day.

Kind of bites, doesn't it?


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.

The Unique Discipline of Martial Arts for Autism

 

Hanko ryu Kim Shirley
Update - Mom is now a Karate student herself!
Kyoshi and Dan kicking
Look at that proud smile!

By Kim Stagliano

My Facebook friends know that I train in Karate and  Kobudo (weapons) five or six days a week. On Saturday  I had completed a one hour kickboxing class in the morning and a ninety minute weapons class in the afternoon. Feeling tired, and ready to go home, I was chit chatting with a few other students and the dojo owner when I heard a keening cry outside. A sound all too recognizable having heard my own daughters cry out the same way. An "autism cry."  "That's my next student, my private lesson," said Kyoshi Danilo Torri, a 6th Dan black belt instructor who has trained since the age of seven and owns Hanko Ryu Martial Arts in Trumbull, CT. 

I had met an autism Mom at a meeting with our mutual Department of Disability Services case Kyoshi with Mia manager last Fall.   We had much in common.  She is a writer, and is looking at all options to help her son. She's a Warrior Mom.  I told her about the dojo's private classes for children with special needs. My own daughters train every week in simple exercises suitable to their abilities.

Sure enough, a few moments later, the beautiful blonde woman I had met opened the door and cajoled her crying son to enter the dojo.  She gently guided him to a seat to take off his shoes. He was crying out, as if in pain. "It's his gut," Mom said in her elegant Israeli accent. "He is often in pain."  Ah, called that one.  Wish I hadn't. She did her best to ease his discomfort as he squatted on the bench, posturing and holding his head. We greeted each other and I continued to gather my belongings before leaving.

As she was explaining to Kyoshi about her son's needs and behaviors, the child lashed out as quick as Bruce Lee himself, smashing his mother in the face.  Kyoshi instantly stopped the attack with very firm but resp----  well, I could explain what happened, but I think Mom can do a better job. This is what she wrote on her FB wall later in the day.  And what I wrote as well.

Please meet attorney and author of Autism Mom Shirley Blaier-Stein.

Kyoshi and Dan 2
Dan listening to Kyoshi.

Today at karate class I had a very special surprise.

Dan has been crying and whining all day today. Abdominal pain, as usual. When it was time to go to his new karate class (we’ve only been to one – absolutely amazing – class), he was whining, but still managed to get ready and come with me to the car. When we got there, even though he was in pain, when I gave him the option to go in or go home, he chose to come inside with me. Just after I helped him take off his shoes and explain to Kyoshi, the teacher, and Kim Rossi Stagliano, a fellow autism mom and a phenomenal writer, who also recommended this teacher to us, about what’s going on with my boy, Dan smacked me in the face really hard.

It was his way of saying ‘I feel terrible and I don’t want you to talk about me with these people while I’m present,’ and he had a point, but it really hurt.

What happened seconds after that smack, was so surprising and touching. Kyoshi grabbed Dan’s arm and told him to never hit his mother again and to say sorry (which Dan did!), and soon after that he took Dan inside the studio to start karate practice. Within seconds Dan started to cooperate with him.

Kim wrapped her arms around me and let me cry in her hug. When I felt a little better she ran to grab tissue paper and sat really close to me until I was OK. She did not leave until Dan’s practice was over and until she convinced me to join her and a group of other autism moms in karate practice and kickboxing, which I’m going to do starting next week.

I felt so lucky that Dan and I got to be supported by these two wonderful people today. Kim’s wonderful book is called All I Can Handle: I’m no Mother Teresa. Kim, I’ll never forget this day.

Today you were a mother to me.

Concurrently I had written on the Age of Autism FB page:

Continue reading "The Unique Discipline of Martial Arts for Autism" »

Wanna See Autism's Gift?

Mia Math

By Kim Stagliano

I ran this photo of my daughter's math homework on FB last week and the comment trail kind of blew up.   Note the photo of the smiling doctor holding a syringe. Not a stethoscope.  A syringe. Frankly, I'd have laughed at a speculum, instead of the gag I felt when I saw this and realize the bitter irony.  Thought I'd share with you, AofA readers who do not spend your days in the FB vortex.  Kim

STATUS: Mia's math. Nice image for an 18 year old counting preschool math thanks to her Vaccine/mercury induced autism. Whiskey in my coffee looks good. See the evolutionary gift of autism - what a crock of elephant shit.

That image sucks a$$.
9 hours ago via mobile · Unlike · 1

 You said it sister
9 hours ago · Unlike · 1

Continue reading "Wanna See Autism's Gift?" »

Thank You Sephora for Pulling Kat Von D Lipstick with Offensive Name

SephoracroppedUpdate: Lipstickgate is now on People.com - please feel free to comment over there. As you can imagine, not everyone understands the problem with the lipstick name. Thanks. KS

Update: And Perez Hilton.

By Kim Stagliano

I want to publicly thank the people at Sephora for acting quickly and pulling a Kat Von D. lipstick whose name was offensive to many of us. 

Kat Von D. is an LA personality known for her extensive tattooing.  You can read her bio here. I can not read her bio there. I am 49 and the font is about size 2 on her site. The lipstick name was Celebutard, which is a real word and is a hybrid of celebrity and retard. Of course the retard part is intended to imply stupid, impaired, disabled.  It's a slur.  It's cousin is Debutard, sometimes used to describe/insult trust fund babies like Paris Hilton. 

I wrote a Huffington Post piece "Are You High on Tattoo Ink?" that caught some attention while expressing my dismay that Sephora hadn't realized how ugly this name was for a beauty product. Other people also wrote about the poorly named lipstick. 

Check out this Tweet exchange from Kat Von D. in which she missed the point of the critique.  The woman she was Tweeting with (I blocked her name for privacy)  and I had a nice exchange today - she realized why many advocates were offended and changed her mind. That's cool. We can all learn and grow. And I hope Miss Von D. also learns and grows from the experience.

Words hurt as much as tattoo needles. And the effects can be as permanent.

Kat Tweet



Sephora pulled the product from their shelves.   They reacted swiftly and, I think, appropriately.

My kids watch Christmas movies year round. One of their favorites is Santa Claus is Comin' To Town. I love the scene when Kris Kringle asks for help from the Winter Warlock, who is supposed to be the meanest, coldest dude in the forest. The Warlock tries to help Kris get the toys to the kids - but fears he has limited powers. After all, he only has a candle stick stub and a few pieces of magic corn.  But that corn makes reindeer fly (and that leads us to Rudolph the Red Nosed Reindeer, which we also watch 12 months a year.)

I'm proud that I was able use my few pieces of magic corn, my really limited powers, to do something positive for a whole lot of people.

House of Cards 200 pixelsKim 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.

 

Hopey Halloween From Kim Stagliano

Halloween 011By Kim Stagliano

Hello, AofA friends. I thought I'd share another hopeful video with you today. Bella continues to learn how to create words with her mouth. I use that phrasing because I know the words are clearly in her mind - it's her autism that prevents them from flowing freely.

You might recall from my book that Bella is my water girl (crapisode ring a bell?)  Her perseveration on water is always correlated with gut issues. When her stomach is in bad shape, she is desperate to feel water on her face.  I've learned that I'm usually at fault - having tried a new food or beverage with a suspect ingredient. Carageenan, the thickener in many non-dairy milks and almost all of the So Delicious brand that we loved, destroys Bella's gut and behavior after about 6 weeks of steady consumption.  It makes her aggressive, angry, she pinches, she growls, she will not sit in a car or bus safely.  I guess that means the refrigerator theory can be resurrected - Mom really IS to blame - ha ha.

Anyway, here's Miss Bella with a special cameo appearance by my beautiful Mia, who will be 19 in December. That Halloween costume in the photo was from when Bella was in Kindergarten - I made her Leo the Late Bloomer - a beautiful story about a little Tiger with lots of delays - and whose last sentence is, "I made it!" And so shall Bella, and all our kids.



House of Cards 200 pixelsKim 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.

 

 

Autism: Computer? Black Sweater. Where's the Mouse? Black Sweater.

Autism Reality

By Kim Stagliano

A recap of Sunday morning, chez Stag. Dad is golfing - his weekly respite from home and business duties. Mom is in charge. My 18 year old daughter has been on a "wear black clothing" jag for several months. She will wear colors to school, but at home wants black yoga pants and a black T shirt. Well, it's late October in Connecticut and her father and I have vowed we will NOT turn on the heat before November. It costs almost $1000 for a full tank of oil, and the tank lasts maybe 6 weeks during heating season with careful monitoring of the thermostat.  Yeah. NO. We wear warm clothes in the house. Well, four of us do.

After her shower, I pulled out a black long sleeved sweater. Nope. Nothing doing. This has happened before - of course. And I  have caved like a cheap lawn chair, letting her wear a short sleeved T.  Today is the day I stay strong. I need to help her learn to wear proper clothing for the weather. I know that. I need to keep her safe and healthy. But it's tough.

I took her computer mouse and iPod Touch away.  I explained that when she puts on the black sweater (I gave her choices of long sleeved black tops) I would give her the mouse for her computer. No go. She has been very sad. She has asked me with her VERY BEST words - making an entire sentence which means she really, really wants something: "Can. I. Have. Mouse. Please." I have girded my loins and said, "Not until you put on your black sweater." She has cried harder. 

Autism sounds like this:

Computer?

Black sweater.

Computer?

Black sweater.

Where's the mouse?

First sweater, then mouse.

Where's the mouse.

First sweater, then mouse.

Computer?

Black sweater.

Computer?

Black sweater.

Computer?

Black sweater.

Where's the mouse?

First sweater, then mouse.

Continue reading "Autism: Computer? Black Sweater. Where's the Mouse? Black Sweater." »

For Better of For Worse

Wedding cake

Today is my 22nd wedding anniversary. I think of the young women getting married today, tomorrow, last month and wonder how many will have to face an autism diagnosis in their precious child? 1 in 5000? Heck no. 1 in 500? Old school. 1 in 250? We chuckle. 1 in 150? Out of date. I in 110? The good old days. 1 in 58 boys? Optimistically.

We need answers as to cause. We need prevention. We need treatment. We need palliative care for those who are here now. We need. We need. We need.  And we will not give up until our needs - and the needs of the women who are putting on a white gown with a heart full of hope and love today - are met.

KIM


Pharma & Medicine's Salad Days of Liability Free Vaccination

Salad 2

By Kim Stagliano

On Wednesday night, I was making a salad for my family, using my Pampered Chef salad spinner. I carefully washed the organic romaine lettuce, and then put it into the spinner. According to my Pampered Chef consultant - who happens to be the number one ranked consultant in the nation in sales - that spinner can go as fast as 14 mph. Weeeeeeeeee! As I was pressing the lever that generates the spin, I became distracted by my husband or one of my girls. I leaned forward with my arm on the spinner to stabilize it and OUCH it bit the tender skin on my forearm! "That's gonna leave a mark," I thought to myself. And sure enough, it did. And darn if it didn't hurt like the Salad 3 dickens!

I looked at my husband and said, "That's a design defect and I could sue Pampered Chef for some serious bread." Of course, I am NOT suing The Pampered Chef for my idiocy. My arm will heal and I learned a lesson in how to use (or not use) my salad spinner.

But I began to think about vaccination - virtually forced, most certainly coerced circa 2013 and how manufacturers and delivery systems (doctors, nurses, retail stores, schools) have ZERO liability for any injury they might cause.  If you would like to understand the how and why of this special treatment for pharmaceutical companies, I encourage you to watch this Canary Party video below. It explains our Vaccine Injury system in America - and how it does anything but pamper YOU (or your loved ones) the consumer.

Video from Kim Stagliano: THIS is Autism Too "SOUP"

Bella Cake 13By Kim Stagliano

Oh Lord I am  tired of so many things. The constant attacks on our community as if we aren't real Moms and Dads doing our level best for our children with autism. The name calling in national publications by "journalists." The assumptions that we are somehow American subversives because our experiences with our children have led us to conclusions outside the corporate pharma governmental agenda.  The dismissal of our kids' very real medical problems.

Saturday was my youngest daughter's birthday. She is now 13 years old. Her name is Bella. I introduced you to her in my book, and so many of you (from all camps I'll point out) came to her defense in 2010 when she was abused on her school bus by an adult. Your support meant the world to me.

I thought today I'd share a brief video after finally figuring out how to upload from my iPhone to YouTube to show you autism in our home. Well one version, Mia and Gianna are different young women in terms of ability. 

Instead of having a slumber party with friends and giggling about boys - Bella spent her day with her father and sisters and me - quietly working on skills followed by a simple supper and homemade cake.  THIS is autism. It's hard for Bella most of all. It breaks my heart every hour of every day.

SOUP




House of Cards 200 pixelsKim 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.

 

 






 

 

The Write and Wrong of Autism in the Media

Mia Writing Sample

By Kim Stagliano

What if you did not know me  and you saw that photo above,  what would you think?  That I have a nice 4 year old, perhaps? Would you smile if you had no idea that I am a Mother Warrior with three daughters on the spectrum? Not just on the spectrum, but on the "wrong side of the tracks" of the spectrum.  Huh? Wrong side? Hell yes. We're seeing the full assault on low verbal, behavior-intense boys, girls, teens, young adults with autism right now in the Alex Spourdalakis story.  We couldn't get the attention of a single media outlet while he was in the hospital. Now, after his gruesome murder, the PR machine has slipped into gear and roared out of the gate to make sure that somehow, anyhow, the non-genetics segment of the autism populations would be tinged, no make that engulfed from head to toe, in guilt.  Especially anyone associated with gut injury, and you know who that means, dear AofA reader.

(BTW, I've never apologized for a single parent who has murdered his or her child - with or without autism. And I continue to make no excuses. We have a moral obligation to our kids to keep them safe - even if that means safe from ourselves.  My chapter "Mother Superior" in my memoir is all about the string of murders in our community including a mother in England who poured Drano into her son's throat, none of which have been used/covered like Alex's.)

The photo above is the fridge worthy type of art most parents of preschoolers display with pride. Except that it is the 12th grade work of my 18 year old daughter. Oh. Insert awkward pause here.

Yesterday the PBS kids show Arthur was on, and they aired the episode about Asperger's. It was done fairly well. The child  with AS had a meltdown during a playdate and his typical peer felt confused and scared.  After the meltdown the typical child talked to a friend who told him his uncle had Asperger's.  They proceeded to show a framed newspaper article about the uncle's Nobel prize in science as a local professor.

Take a look at the photo above.

Autism in the media looks very little like what my three daughters have - very litte indeed. Ari Ne'eman speaking for my girls as an expert?  A farce.  Even Temple Grandin, a female herself, looks nothing like my girls who actually have far more emotion, facial expression and ability to be physically loving compared to what I have seen in Dr. Grandin over the years.

How many times have you said (like I have) "when you meet one person with autism, you've met one person with autism."   My girls matter. And their autism is a valid and real, even if rarely acknowledged in the media portrayals.   Your child too.

Write?

House of Cards 200 pixelsKim 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.

 






 

 

Autism Mom and Cover Girl! Autism File Goes Digital.

AF CJWe're happy to report that you can now download Autism File Magazine free.  Simply click THIS LINK to start your subscription. 

The Autism File, the first magazine ever published devoted exclusively to Autism Spectrum Disorders, announced today that the upcoming August/September issue will mark the magazine’s entry into the world of digital publishing.

Since the first issue of the magazine appeared in 1999, the Autism File has been described by readers as a “lifeline”.  “Thanks to the most knowledgeable experts and experienced parents from around the world, we’re able to present cutting-edge content and critically needed support to families affected by autism,” said the magazine’s founder and Editor-in-Chief, Polly Tommey.  “The new digital format will allow parents and professionals—no matter where they live—to have immediate access to the crucial information provided by our contributors.”

In addition to the magazine’s bi-monthly publication, which will be available as a free download six times per year, the Autism File’s team of editors and writers will provide a weekly update focusing on relevant topics including nutrition, biomedical treatments, sensory issues, advocacy, and safety.  “There is an overwhelming number of concerns that autism families face each and every day, and often on incredibly tight budgets,” said Polly.  “Our readers will now have the latest innovations and strategies for all aspects of living with autism right at their fingertips, and at no cost.”

Our own Cathy Jameson is this issue's cover girl - along with her handsome son Ronan.  once you have subscribed, (see link above) you can read Cathy's article titled Navigating the System to learn about the IEP process.

Continue reading "Autism Mom and Cover Girl! Autism File Goes Digital." »

Autism Community Unites Behind Poison Pen Letter Recipient

Purple letter

By Kim Stagliano

Every so often, this fractured, exhausted, nose-to-grindstone-for-the-kids autism community is able to leap to the defense of another family without so much as a pause. It doesn't matter whether Mom is biomed or ABA, psychiatric meds or organic Yak juice - you get my point. Sometimes the cruelty of how others perceive and feel entitled to treat our children - no matter their age - rallies us round the autism flag like Pearl Harbor.

Media outlets from Perez to the NY Daily News have reported on a poison pen letter sent "anonymously" to a family in Toronto, Canada. From City News Toronto:

A family is in shock and a community has united after an anonymous hate letter was written about a young boy living with severe autism.

Karla Begley told CityNews her son Max, 13, stays with his grandmother in the morning during the summer time. It was at that home in Newcastle where letter was delivered on Friday.

“I was shaking when I was reading it,” Brenda Millson, Max’s grandmother, told CityNews. “It’s awful words. You don’t know why somebody would ever do such a thing.”

The typed, one-page letter refers to the young boy as a “nuisance” and a “wild animal” before suggesting the family move or “euthanize” the child.

My neighbors have no idea how often I close windows on a warm day when a meltdown is in progress or imminent. The woman who might give me stink eye at Stop & Shop doesn't know that my child is using every ounce of her courage to maintain her calm while roaming the brightly lit store.  I wrote a BOOK trying to explain to outsiders that our lives - yours, mine, the autism Mom who thinks I'm a complete anti-vaccine kook - are crazy hard.   We deserve compassion and for God's sake, a bit of kindness. It's the end of summer - my kids desperately need their school routine. Don't yours? Maybe Max needs his too. Certainly Kara Begley needs to hear from all of us in the autism community, "We love you.  We have your back. We love your son.  We ARE you."

And to "One Pissed Off Mother" who thought typing this letter would make her feel better and superior to Max, his Gram and his Mom?  We and our children will live our lives with pride and dignity, thank you very much.  And I hope the media crush you are receiving now feels like a thousand paper cuts under a shaker of salt.....

Kim 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.

 

 




 

Back to School

PinwormsBy Kim Stagliano

I suppose I shouldn't complain, our school was in session until late June.   But summer is H-A-R-D when you have a child(ren) with autism. Like I need to remind you? We were fortunate to have some extended school year programming and a camp  that actually allows kids with behaviors and over the age of 9!   My oldest is entering her "senior" year of high school. Can you smell my terror from your computer? My middle daughter is in her third year of high school, and my baby, who turns 13 next month, is a 7th grader. If she could speak I'm pretty sure she would be a surly  pre-teen telling us all to "just leave her alone!" Her behavior this summer has taxed us all to our last nerve  - a combination of gut issues and the general mien of a 12 year old girl.  (As an aside, my folks sent me to boarding school at 14, need I say more?)

How are you holding up as the summer ends.  Are your kids back to school already? And what are your hopes for this coming school year?

(PS) I mentioned gut issues? Who among us hasn't carried a dead worm in a baggie to the ped?  Gary didn't make it..... 

Father's Day and Autism

Father daughterBy Kim Stagliano (Cathy is off today with her five kids and their wonderful Dad.)

Remember being a kid and asking your parents, "Why isn't there a kids' day?" The usual response was, "Every day is kids' day." For those of us with children on the spectrum I suppose that's right. Every day IS kids' day. Many of our children need/require/demand levels of attention, care and support the outstrips the needs of most typical children - even those younger than our own. Don't we know it?

My children have a father who participates in their life. He can change a pad, make a gluten free meal, get the girls ready for school (well, their hair looks unkempt but he tries) and is a full partner in the day to day workload that comes with having a child on the spectrum.  I'm very lucky.

I want to remind the Dads who might not be so involved in the daily care and feeding and school issues and behavior work (not just earning the bacon, but frying it up in that pan to quote an old women's lib song) that we Moms need your help. And we often stink at asking for it. (Raising hand.)

Thank you to all  of the Dads who read AofA and who are an integral part of their son or daughter's upbringing. It's a tough job. Especially for fathers of sons - who once dreamed of varsity baseball games and summer camp outs and have had to make adjustments that respect their boys' abilities.

Happy Father's Day to all of you.


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? " »