Bedtime? I Don't Think So...

Bella wants the Nunchaku. "Whatever Bella wants, Bella gets ..." To paraphrase an old standard. No idea where she got that wicked stare down. 

Happy Father's Day

Things That Don't Work With Autism

"Honey, will you call the kids to dinner while I set the table on fire?"

Kim Stagliano: Two Children With Autism Wander and Drown in One Week

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

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

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.

>I'm all for accepting my girls - I'm all for people being aware of autism.
But they are hardly the priority when the rate is 1 in 50 school
children. We HAVE acceptance in every part of our life for the most part
- and you'd have to be deaf, dumb and blind not to be aware of the word autism.

My daughter in the corridor of her high school to promote reading.

It's the glossed over version that bothers me so much, as if the dark side of autism is too shameful to share and it's incredibly cruel to the people with autism who suffer, and their families.  "Autism? Isn't that smart quirky kids?" It's like saying, "Cancer? Isn't that a slightly darkened mole?" Well yes for some it is - but for others - probably the vast majority? It's not a that simple -- or survivable.

Please support the National Autism Association Big Red Safety Box program. $35 buys a safety kit for a family.  And if you are in need of a box, by all means contact NAA at the link above.  To the families of Mikaela and Owen we can only express our sorrow.


Kim Stagliano is Managing Editor for Age of Autism.

Trumbull High School Leads Way in Autism Inclusion

Miss G at our local High School

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 downtime, 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."

Kim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

The big circle

Mia called this ride the big circle. It's called the Vornado. She asked to ride it. Always chilly at the carnival . We stayed about an hour and rose two rides. $1.25 a ticket and 3 tickets per ride. Yikes! Mia and Gianna had fun while Bella and I watched.

Carnival Time!

Jenny McCarthy Chats with Kim Stagliano For Autism Action Month

Thanks 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.  Jenny continues to work hard for the autism community - despite the constant drubbings she takes in the media.  And her org Generation Rescue is putting dollars and tools directly into families' hands to help children gain health and skills. 

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.

I do NOT light it up blue. I do not support Autism Speaks and their bloated payroll and tepid research and pharmaceutical industry ties.   PINK - light it up pink. 

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.

Bella breaks all the molds. Her diagnosis is autism, and she is what I call “preverbal.” Her autism looks very different from her sisters. She was physically behind her infant peers and did not walk until she was 2 years old. Her coordination and gross motor skills almost look like a mild cerebral palsy. She can say two or three words, but understands everything she hears. She uses an assistive technology device that allows her to communicate simple needs. She is 12 years old and a tall, slender girl who is affectionate and always trying to find ways to interact with those around her.

JENNY: What don’t people know about autism that they should know?

KIM: Without sounding like a Debbie Downer, autism is a monumental stress on the entire family. Media portrayals are often “rah rah” or focus on the just the feel-good stories. And there are plenty of opportunities for joy when you have a child on the spectrum. But the day-to-day reality is that it is extremely hard word to accomplish even an average task like grocery shopping or going out for a bite to eat when you have to facilitate, direct and “rethink” basic routines so that they respect and meet the needs of the child. Families need more support and understanding from the general public. And people with autism deserve better programs in school, medical care and beyond to help them function at their best levels.  Read the full interview at Jenny McCarthy's SPLASH blog at the Chicago Sun Times.

Happy Easter!

Easter 1971 with my brother. My Grandmom made me that costume and I hopped around the neighborhood with treats for my friends.