Kim Stagliano

Autism Sucks and Then We Die

2012-10-01T15:32:34-04:00

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

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

Days after my return from a luxury business trip (a fleabag roadside motel with an "HBO" sign blinking in the office would be luxury to me at this point), I picked up this form (below) at Probate Court in my town. What is it? It's a form that enables my husband Mark and me to take away our daughter Mia's adult rights when she turns 18 in December. You read that correctly.

We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.

She was a tot who could count and read before 2. And THAT, my friends is the reality of autism for thousands upon thousands of American families. It's like Alzheimer's for a lifetime in terms of safety, care and needing supervision. Except instead of an exhausted adult taking care of the "sandwich" of parents and kids for a few years or even decade of Alzheimer's, it's exhausted parents taking care of their adult children in the endless buffet generation of autism.

There's a spot on the form for "standby guardian." That means the next person in line after Mark and I die. D.I.E. Whom shall I appoint? Her sister Gianna? Nope, she has autism and her petition date is in 2014. Her sister Isabella? Nope. She has autism and her petition date is in 2018. Do you have a standby guardian you can lend us? All it requires is 24/7/365 love, care, attention, physical presence, complete ability to make every decision and about 1,000 other responsibilities. No sweat!

I held my emotions in check as I stood in the doorway of the Probate Court judge and asked for the paperwork. When the kindly town hall staff member said to me, "We're processing paperwork for two other -- " I lost it. Tears slid down my cheeks. "I know," I said. And I told her the names of the boy and girl who are turning 18 within days of Mia. We celebrated their 16 birthdays together at Bounce U. Three Moms, three Dads, all standing around in our socks in a jumping castle joint laughing through tears about how we should have been at the local car dealer negotiating a bulk discount on Honda Civics.

A favorite waitress from a local restaurant whispered in my ear a couple of weeks ago, "My son was just diagnosed with autism." He has seizures and severe aggression. He's not even 3. She deserves more than what we "old timers" have put up with for so long. We need treatment. We need cure. We need prevention. Look, if you do not want prevention, treatment or cure for yourself or your own child -- that is your right. I respect your point of view and I will be sure to fight so that you can have an exemption to any and all of it. (Insert irony emoticon here.)

To those parents who have forged the way before me, I say thank you. Barbara Fischkin and Chantal Sicle-Kira -- and so many others who shine the light on a dark path for us. I have only harsh words for those in the media, government, doctors's offices, universities and on blogs and sites who'd have us believe we are bad parents for wanting to wipe away our children's autism to reveal the child underneath. Who think we are simply ignoring the good and the gifts of autism. My girls are gifts. My girls are good. Their autism is a noose around their necks. I've no patience for those who might tisk tisk and beg for acceptance and placate donors with "awareness" and fund evermore genetics studies that lead to nowhere while putting up barricades for those of us who will always have hope for the basic goals of every other serious diagnosis in America. Treatment. Prevention. Cure. Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta.

I cherish my Mia. My firstborn. A child who was not born with autism in 1994 and who at 18 will become a legal child for the rest of her life. Mark and I expect to take care of our girls until the day we die. In our hearts we are proud to stand by them come hell or high water. We are mentally prepared. We will never be financially prepared. I train in a dojo up to six days week to stay physically prepared. We will never desert our kids.

At the same time, we should never have been placed in this position. And more of us need to scream that the floodgates are officially open and the high water is coming. Fast.

The epidemic of autism is growing older and we are ill-prepared for their needs. Until we find the cure for parental death, we'd best start looking for one for autism.

For more by Kim Stagliano, click here.

For more on autism, click here.

Boys, Men, Howard Stern and Father's Day

2012-06-15T22:56:15-04:00

On Thursday night I attended a party at Magnolia Bakery on the Upper West Side in Manhattan. The hostess was a radio personality named Lisa G. who is also the newswoman on The Howard Stern Show on Sirius Satellite radio. If you've read my book All I Can Handle I'm No Mother Teresa you know I am a huge Howard Stern fan and have been for almost 20 years. Sure, it's incongruous for a buttoned down, Lilly Pulitzer wearing, Fairfield County CT autism Mom to throw out a "Bababooey" as easily as "Honey, where's the plunger and the snake!?" But I love to laugh, am a fan of the irreverent and Howard Stern has gotten me through some rough days and nights during this autism journey. When someone yells, "Does anyone remember laughter?" I say "YES! It's on Howard 100!"

While at the party, which featured not only the delicious cupcakes for which Magnolia is famous, but an assortment of home baked treats by both Lisa G. and Stern Show SuperFan extraordinaire Mariann From Brooklyn, a beautiful woman who is also Howard Stern's biggest fan bar none, I struck up a conversation with a 31-year-old woman I'll call Ayesha. The topic of my children came up, and we talked about a friend of hers who has a child on the spectrum and whose husband pooped the bed in terms of caring for him. Or her.

And then she asked me a question that made me put down my cream cheese chocolate chip cookie bar (and that ain't easy for me to do) and think hard. It went something like this: "What traits should I look for in a man I can consider as husband and father of my children to make sure that doesn't happen to me?"

Well color me Cookie Puss and call me Debbie the Pet Lady. I didn't have an immediate answer. It wasn't the sugar haze I was reveling in either that made me think hard. But I thought of my own husband of 20 years Mark, and how he has stood by me and our three beautiful daughters, Mia (17), Gianna (15) and Bella (11) through thick, thin and thin enough for an electron microscope. I shared this thought with her.

Beside the basic kindness and generosity that you'd look for in a husband and the more superficial attraction, it's impossible to know who will rise and who will sink like a stone when adversity moves in for a long stay. There are no guarantees, which is why traditional wedding vows cover all the bases, good and bad, though there isn't bride alive who pays attention to worse, poorer or sicker on her wedding day. I sure didn't.

This weekend is Father's Day. I'd like to thank my husband for acting as our family anchor even while he keeps us afloat during tough times. It's not easy to watch your children suffer and struggle. Not a father watching his son -- or a man whose every instinct is to protect his daughters.

Thank you to all the Dads who stand by their families. I wish I had better advice for Ayesha. I got lucky. I hope she does too. Did you?

From the Pew: A Catholic Mom Who Closed the Factory

2012-03-23T12:10:36-04:00

My husband and I try to attend Church every week. Take a look at the vowels in my name: "Rossi Stagliano." We are, as you have guessed, Roman Catholic. Throughout my adult life, I have been able to find the good in Church, meaning the community, the connection straight to God, and the celebration of music and prayer, even when I disagreed with or was dismayed by Church policy, actions and scandals.

The last two weekends have been the straw that broke the camel's back. (You, know, the one that can not fit through the eye of a needle. See, I do pay attention to the Gospels.) Our parish has become political under the guidance of the pastor, who is in his 40s and has been at our church for a few years now. We've had detailed talks on abortion during the children's Mass that would curl your hair. Or uncurl mine. We've been told how to vote both in the bulletin (the newsletter that is updated every weekend and distributed at all Masses) the homily and the announcements during the Mass. I saw political signs telling us to vote against gay marriage lining the front of the church -- technically off the property, I assume. I'm not a surveyor. But clearly in front of the beautiful stone church building. Last Sunday though, our priest got personal. Here's what he wrote about the birth control "debate" last weekend (can you stand it, it's 2012 and we're contemplating birth control?): "Abortion, direct sterilization (as opposed to removing a cancerous condition that indirectly leads to sterilization) [Kim's note, I guess he was too shy to say hysterectomy] and contraception are unique in that they destroy perfectly healthy conditions that are or should be natural to the human being."

Um, priests aren't allowed to have sex, doesn't that also destroy a perfectly healthy condition natural to the human being?

It's gets worse: "Ironically, science shows that the couple that practiced natural family planning (which is NOT rhythm) is the couple that has a deeper relationship with God and each other; they will be better citizens and raise better citizens because sacrifice and God first is central to them. Direct sterilization and contraception destroy the human's ability to engage in healthy self-giving." (Boldface is my own.)

Wow. In 2000, I gave birth to my third child. My older two had been diagnosed with autism just two months before Mark and I conceived Bella. My OB, a kind man who had a son with severe ADD, knew more about what Mark and I were in for with Mia and Gianna than I did. He gave me the option of terminating my pregnancy. I declined. I also declined amniocentesis, knowing there was nothing that could convince me to terminate my unborn child, although I am a pro-choice voter. I had the amnio, after he explained that if something was wrong with my baby, we'd be better medically and emotionally prepared at the birth by knowing in advance. After Bella was born, I was exhausted. I started to realize what level of care Mia and Gianna would need. And I knew in my deepest heart that I could not have any more children and be the mother and wife my family needed. I had a tubal ligation. Or as my grandmother used to say, "I closed the factory."

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

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

Some folks would tell me to simply stop attending church. Nope. I won't let this priest run me off. My girls enjoy the routine of Mass. The parish is full of kind folks who have welcomed us, autism and all. It wouldn't be a proper week without my Gianna telling us, "Time for the blood!" Priests come and go -- this guy is the third pastor we've had in six years. I have written him off in my heart and mind. I don't need him to "talk to God" as Mia says when we lumber into church as a beautiful, happy, proud family of FIVE. And no more.

Howard Stern Performs Magic for Harry Potter

2011-12-07T13:04:32-05:00

Recent news reports declare that Howard Stern is in talks with Simon Cowell of America's Got Talent to join Sharon Osborne and Howie Mandel as a judge. Comments on news sites and blogs have been scathing, with viewers loudly declaring they will abandon America's Got Talent in droves if Stern is a judge. Here's a sampling from the ABC Go site:

Posted by: anon | November 11, 2011, 10:52 am 10:52 am

No way would I subject myself to such a low class, no talent individual. I enjoyed watching the show and I enjoyed Howie and Sharon. However, if they add Stern it will be a definite no for me. Good Luck with that

Posted by: Jacki | November 11, 2011, 11:18 am 11:18 am

If he is a judge I will never, never, never watch this show again.

Posted by: LYN | November 11, 2011, 11:20 am 11:20 am

Howard Stern couldn't judge the bottom rim of a rusty old garbage pail, as far as I'm concerned.
Just my opinion. Will NOT continue to watch the show if he's voted on!

Posted by: Sue | November 11, 2011, 11:38 am 11:38 am

OMG... Well here goes another faithful viewer if he becomes the next new judge... I highly dislike him!!!

I've been a Stern Show listener for almost twenty years, and I'd like to dispel the "myth" that Howard is some sort of lecherous, black hearted monster. On December 13, 2010, Sir Paul McCartney played at the legendary Apollo Theatre in Harlem for Sirius XM glitterati, investors and even a few lucky subscribers who could win tickets in a lottery.

Stern took a phone call from a man named Lance Thibault that brought most of us listeners to tears -- and touched Howard too. He'd been on hold for over four hours while driving a truck for a living before speaking to "The King of All Media." Lance's father, Harry Potter, Jr. (yup, that's his real name) was a Howard Stern and McCartney fan and had end stage cancer. In an adult (pardon the double entendre) version of "Make-A-Wish," Howard shocked Lance and made us cheer with pride by giving him two tickets to this exclusive show. Lance told me this week, "We didn't think my father was going to be able to get out of bed for his condition was so bad and it wasn't till the day of show when he said he was going to try. We took a stretch limo being that it was such a special night and the extra room needed for us and the wheel chair. My father said it was the best night of his life."

Harry died on December 22, 2010.

I can't understand how Americans can look past transgressions so easily in their pop icons like Chris Brown, Woody Allen and even Michael Jackson. And yet Howard Stern, who has a record of clean living, fidelity to his family and has raised three children who've never been on Perez Hilton with their skirts above their heads, is cast as Lord Voldemort. Harry Potter would say otherwise. If he could.

Will My Second Baby Have Autism, Too?

2011-08-19T09:28:00-04:00

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

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

The previously estimated risk was 3 to 10 percent. The new study shows a 26 percent recurrence for males and 32 percent for infants with more than one older sibling with autism. In short, nothing practical has changed in 11 years. I'm all about the practical, so what to do in 2011?

Answers could stem from the recent California Autism Twins Study (CATS), the largest ever study of twins with autism, which questions the scientific assumption that autism is genetic, instead pointing the finger at environmental causes. If autism is environmental, not purely genetic, we should be able to prevent and treat autism if we can determine the triggers. That's good news.

Talk to your doctor about steps you can take for an overall healthy pregnancy and to limit potentially harmful environmental exposures to your baby. Some suggestions are easier to swallow than those giant prenatal vitamins, like eat organic, healthy food and avoid household and work chemical exposures. Limit tuna and swordfish intake. If you opt for a flu vaccine, ask for a mercury free version -- available through county health offices or your pediatrician. You can also read "Healing and Preventing Autism: A Complete Guide," co-authored by Jerry Kartzinel, M.D.

If you do have a second child on the spectrum, your experience with your first will make the process easier. I hope I serve as proof that a family can thrive and prosper. Children aren't appliances, they don't come with warranties and guarantees. My girls are my joy. And while I'd take away their autism for their sake, their dad and I love them just the way they are.

At the end of the day, we simply don't know how to prevent autism, yet. The Combating Autism Act is up for re-authorization, and unless it focuses on treatment and prevention -- which means determining causation, along with caring for those who are here, like my three girls -- parents will live with this sword of Damocles over their heads forever. Tell your congressman, senator and doctor that treatment and prevention are a priority for this diagnosis that continues to grow faster than any other childhood disease. You can make a difference for your own children, and your grandchildren too.

De-Funding Planned Parenthood: A 'Magnum'-Sized Mistake

2011-02-24T15:38:30-05:00

"Is this your condom? We found it in your car."

Imagine your high school boyfriend's mother asking the two of you that question at the kitchen table as she waves a foil Trojan packet in front of you. Did you just lose your neck into your shoulders and cringe with embarrassment?

I sure did.

Three decades ago, my boyfriend's Mom asked us that very question. I'm not sure what she was doing in his ancient Opel Kadet station wagon. Perhaps looking for condoms ... Smart woman.

To this day, I thank her for her care and audacity. At her command, we went to Preterm, a Planned Parenthood clinic in Brookline, Mass. There, I had my first gyn exam, pap smear and learned about proper health care for a sexually active almost-a-woman. I was old enough that I was no longer seeing the pediatrician, instead, I saw my parents' doctor. He was also my Dad's golf partner. He had no interest in performing a gyn exam on me. I have a hazy, sweaty armpit, heart thumping memory of him saying something about, "Not until you're married." I'd had a major crush on his son the summer before, and the thought of him examining me "down there" was more than I could bare (misspelling intended). So thank God for old school doctors.

And thank God for my boyfriend's Mom, Fran.

I left Preterm with a prescription for the birth control pill in my wallet. For some reason, the thought of taking the Pill scared me to death. It seemed too grown up, which was ridiculous since I had deemed myself old enough to become sexually active. No one ever said young love is logical. I didn't fill it for months. And when I did, I can remember taking the very first pill, standing in my boyfriend's downstairs bathroom, off the laundry room. He stood to my right, filling the doorway and holding my hand as I swallowed that small, peach colored miracle. We didn't grin or high five each other. We looked like two scared kids in the mirror. But we were two scared kids with a very smart parent who looked out for us, and who had access to an affordable Planned Parenthood clinic. We were two scared kids who never became a terrified pregnant couple with a major choice to face.

If Fran had said, "Kim, get your mother to take you to the doctor," would I have had the nerve to ask my own mother for birth control? Are you kidding me? I had hoarded tampons from the school's bathroom dispenser for a solid year before I got up the nerve to tell her I was using them. I have a fantastic Mom, and she did ask me if I was using birth control when I was in college. But I would never have broached the subject with her.

De-funding Planned Parenthood is cutting off the nose to spite the face. In fact, it's a "Magnum" sized mistake.

Vaccine Safety: Why Parents Are Concerned

2010-10-17T12:58:55-04:00

A new study from CS Mott Children's Hospital finds that 89 percent of parents think vaccine safety is the most important topic in medical research today. That makes sense, since the American pediatric vaccine schedule now includes 48 vaccinations before the age of six. Parents are facing vaccination choice issues at every pediatric visit.

Dr. Paul Offit, MD, whose RotaTeq vaccine is manufactured by Merck, and the American Academy of Pediatrics (AAP), have failed to convince the public that vaccines are fully safe and should be taken without question despite their full court press. You can check out Dr. Offit's presentation to the AAP on how and why to combat informed parental choice How the Anti-Vaccine Movement Threatens America's Children for yourself.

I imagine that many (perhaps a majority) of Huffington Post readers are pro-choice and respect a woman's right to choose. Should a woman lose the right to make appropriate, safe medical choices in conjunction with her pediatrician for her child once she becomes a mother? If you are pro-life, does a mother's right to protect her child end when the baby is born?

Beating parents over the head with the "disease is only a plane ride away" has failed.

Clobbering parents with the concept of "herd immunity" rings hollow when your baby calf is the one who falls.

Bludgeoning parents of autistic children has failed to connect with parents in its utter transparency to protect corporate and governmental interests.

The vaccine safety community doesn't have big gun PR firms to coax the media into doing our bidding. There's no government support via PBS programs like New Sid the Science Kid Flu Vaccination Special Episode Now Available for Free Download on Flu.gov, enticing kids to get vaccines as if you're selling breakfast cereal.

How does Dr. Offit claim the "anti-vaccine movement" has a Svengali-like power over the media when the head of Health and Human Services Kathleen Sebelius stated during the H1N1 vaccine campaign last spring in Reader's Digest "We have reached out to media outlets to try to get them to not give the views of these people equal weight in their reporting to what science has shown and continues to show about the safety of vaccines."

We have no glossy published books sent free to pediatricians to make sure they preach their talking points in lockstep. (Sure wish they'd get a copy of this book.)

Read the full article about the study in the University of Michigan Health System HERE .

Autism and Assault in Our Family

2010-08-22T16:00:00-04:00

Three summers ago, I wrote a post for HuffPo called, "I Will Shake Your Foundation" on the fears my husband Mark and I have about bullying, abuse, neglect, rape and murder of our three defenseless daughters with autism.

Danny Bonaduce, the child star from the seventies TV show "The Partridge Family" had growled, "I will shake your foundation!" in a mock jealous husband rage during his reality TV show, implying he'd rock anyone who approached his wife. I adopted the phrase.

Last week, a 24-year-old special education school bus monitor from Bridgeport, Connecticut was arrested and charged with three counts of assault against a handicapped person and three charges of risk of injury to a minor. That minor is Mark's and my nine-year-old daughter.

The Connecticut Post newspaper has been covering the story Court Case of Woman Accused of Hurting Autistic Child Continued :

According to police, on at least three occasions last April and May, Davila, a monitor on a bus for special needs children for the First Student Bus Co., abused the little girl. Police said there could have been more incidents but only three were captured on the bus's video surveillance camera.

Police said the girl's parents were trying to figure out how their nonverbal daughter kept getting bruises and sprained fingers on her right hand when on May 19 they received a call from the nurse at Frenchtown Elementary School that their daughter had arrived at school that morning crying hysterically. The parents then demanded to see the video from their daughter's school bus.

That video, which also had audio, showed Davila grabbing the girl's hands and the girl then crying out in pain.

Police said they then obtained DVD copies of the bus videos for April 27, April 29 and May 19. On the 27th and the 19th the driver of the bus was Davila's mother. Police said the April 27 video shows Davila, during the bus ride from the school to the girl's home, putting her hands in the area of the girl's hands. With each movement the girl's cries get louder, police said.

On the April 29 video, Davila is heard telling a substitute driver to stop at the girl's home first after they leave the school, according to police. "Because she (the girl) will (obscenity) her pants," she explains, and within minutes of leaving the school the video shows Davila again reaching towards the girl's hands and the girl is heard crying, according to police.

On May 19, the girl is seen on the video boarding the bus with her mother who assists her being seated. When the mother leaves the bus Davila is heard saying, "Goodbye mom," police said. She then touches the girl's head twice and then grabs the girl's right hand and begins to manipulate it as the girl whimpers, according to police.

We've had an epidemic of abuse against people with autism in the last several months.

A mother in Dallas murdered her youngsters. A mother in The Bronx shot and killed her 12-year-old son and herself. A 20-year-old man in Pennsylvania was left to die in a residential school's van on a hot summer day. A father in Canada killed himself and his son in their basement. A socialite in Manhattan plied her son with pills in a luxury hotel until he seized to death. A mother in England jammed caustic cleaning product into her son burning his throat and stomach until he bled to death.

And now our daughter, nine years old, preverbal, 62 pounds soaking wet, sitting quietly on her school bus was (allegedly) assaulted once, twice, thrice, four times and who knows how many more?

Let the foundation shaking begin.

The 'Good Old Days' on Unemployment

2010-07-23T14:21:00-04:00

I've watched the political debate over the worthiness (the Republicans call it worthlessness) of the unemployed American workers whose benefits are ending.

My husband lost his job in the fall of 2008, and we went onto unemployment. I remember his face, ashen white, his lips pinched, as he gave me the "throat slash" gesture with the phone to his ear, while his employer told him that due to the economy, his services were no longer required.

Why my heart leaped with the prospects!

"Finally, Mark, we can soak the system we've been paying into for so many years. It's payback time, baby! Uncle Sam is going to put us into a sedan chair and carry us around town. Pop the champagne!"

Not. So. Much.

Champagne? When you're on unemployment, you can't afford the "Champagne of beers," (for those of you old enough to remember the old Miller High Life slogan.)

Mark qualified for the highest dollar amount available in Connecticut. If you totaled it up for a year, you got what I was making at BBN Software in Cambridge, MA as an Advertising Manager in 1986. The entire month of unemployment didn't cover the rent we were paying on a small, three bedroom ranch.

You know what happens when you are on unemployment? You go further into debt as you try to stretch that check as far as you can to cover your bills and food for your kids. Your credit card minimums start inching up each month. Your blood pressure follows. You live with a cool cloth slapped against your forehead to mop up the sweat pouring off your brow -- even if it's February.

You're scared to death. You know you may never catch up and get back to that rung on the ladder where you had a few bucks in your pocket and could look your wife, husband or kids in the eye when they asked if they could go to a movie, or to The Olive Garden. You might fall off the ladder altogether.

For Republicans to band en masse against Americans and deny benefit extension while even thinking about extending an unfunded tax break to our wealthiest citizens is cruel. And it is politics at its worst.

Next time you're in the Piggly Wiggly or Stop & Shop, take a moment to really look at the faces of the shoppers around you. I'll bet they look a lot like you. Except their faces may be ashen white, their lips pinched as they pick up, and put down, a pound of hamburger, instead, going to the pasta aisle for a $.99 box of spaghetti. Again. And wondering what they'll eat when $.99 is more than they have in their pocket.

Autism Should Not Be a Death Sentence

2010-05-03T11:10:00-04:00

This had been a particularly rough April, aka "Autism Awareness Month." I'm trying to find the bright spots where I can. As always, I begin in my own home, with my three daughters, who have autism, and who can make me smile and laugh (and shake my head and holler, I admit) from morning to night.

This month, several people with autism wandered away from home and were reported missing. Most returned home safely, like Nadia Bloom, the witty youngster with Asperger's who stood in a swamp for four days until her miraculous rescue. Three year old Aiden Johnson of Arkansas was not so fortunate. He wandered away from his grandmother's house and drowned nearby. Erik Lippmann, age 30, was found dead on the beach in California, after having gone missing several days ago. Others included:

Kevin Kwok, 17, Ontario - found
Ryan Beaudette, 14, NY - found
Hallden Parrish, 16, FL - found
Brian Ortiz-Molina, 14, FL - found
Rebecca Collins-Fisher, 16, FL - found
Cody Daniel Jones-Barnard, 13, OR - found

This week, Daniel McLatchie, 44 shot his 22-year-old son Benjamin and then turned the gun on himself, in Maine. The newspaper report read, "it appeared that Daniel McLatchie was upset about what would happen to his autistic son after he and his wife died."

In February, a wealthy Manhattan executive named Gigi Jordan fed her eight-year-old son pills until he seized into death.

And lest you think it's Americans for whom the stress of autism is a burden, a Mum in London forced her 12-year-old "severely autistic" son to drink bleach, killing him. "Satpal Singh is believed to have killed the 12-year-old boy as she struggled to cope with looking after him."

Autism should not be a death sentence.

I wish I could tell you that autism brings only love and joy and candy canes and OMG! Ponies! Sometimes it feels like that's all the media (and even some within the autism world) want to hear from those of us living day to day caring for a loved one(s) or even those with the diagnosis themselves. If only that were the full reality for families. It's not.

However, that doesn't mean autism is nothing but stress and challenges and tears. Not by a long shot. And it doesn't mean people with autism are doomed. Not even as adults.

Last weekend, the carnival came to my town. And I knew "he" would be there.

Bob.

Bob who has autism, looks to be in his 40s, and rides the scrambler from the moment the gates open until they close.

My girls love the Scrambler. It moves fast, it activates their sensory systems, it makes them laugh with giddy excitement. It's always our first ride at the carnival. We approached the ride, having arrived just moments after the gates opened, and sure enough, there was Bob, already in his Scrambler seat. I said to the young ticket taker, "He's here!" cocking my head toward Bob. "Of course," he answered, "that's Bob and he's been coming for 15 years." The ticket taker couldn't have been more than 21 years old.

I smiled and said, "Hi, Bob!" waving from the car where Bella and I were squished into one side. Bob waved back, grinning from ear to ear. The ride started, the slow sweep of the cars picked up speed until we were flying across the blacktop of the middle school parking lot where two of my girls are in special education for their autism. I heard Bella begin to laugh. I saw Mia and Gianna's wide smiles as they whooshed past us in their own car.

And I heard the glorious intonations from Bob. He rocked furiously back and forth, loudly proclaiming his joy in his own language. The ride slowed down. I wiped the tears from my eyes (it was the wind, I swear.) As I walked past the ticket taker, I said, "Thank you. And keep an eye on Bob."

"I will," he answered.

How about you? Will you keep an eye on the Bobs of the world?

Bridgeport Diocese Fights to Protect "Property," But What About the Children?

2010-04-12T18:10:00-04:00

Last Christmas while visiting my parents, I attended Catholic Mass in the simple, sparsely decorated hometown church where I'd made my First Holy Communion and Confirmation, in Plainville, Massachusetts. The priest, Fr. Gary Thomson, made such an impression on me that I sent him an email when we returned home, thanking him for his homily (sermon). Unlike other Christians, who'd been moaning and groaning about the travesty of Santa Claus and how Christ was being cut out of Christmas, Fr. Gary spoke of Santa's spirit of giving and love for children. He sat casually on the edge of a pew as he spoke to the congregation. He was warm and kind, and I left the Mass feeling great.

Two weeks later, Fr. Gary was dead.

Just after Christmas, officials from the Archdiocese visited Fr. Gary and removed him from the rectory. He had been accused of a count of sexual misconduct some fifteen years earlier. He left his Parish and went to his home in New Hampshire, where he died.

As the local news story read, "News that their pastor had been put on leave just two days before his death because of an allegation of sexual abuse has left parishioners at St. Martha's Church stunned and asking questions.

"Parishioners learned from the Archdiocese of Boston this week that Rev. J. Garret Thomson, 55 -- affectionately called 'Father Gary' -- was facing a single allegation of sexual abuse of a minor."

In an official update to the parish on the following Monday, the Archdiocese noted that "the allegation concerns conduct alleged to have taken place approximately 15 years ago."

The official story given to parishioners (my mom attended the meeting) was that he died from complications of his diabetes. Did he become so heartsick at the allegations that his diabetes spiraled out of control? Or did he commit suicide in a manner that would be "undetectable" given his condition, out of shame, guilt, or both?

This past week, I sat in church in Trumbull, CT. There, the priest announced that the Bridgeport Diocese was asking us to fight against a bill in Connecticut that would remove the statute of limitations on sex crimes, opening up the Church to more accusations. I was aghast when I heard this request. As a mom and a garden-variety human being, I think sex crimes should be brought to light no matter how far back they may have occurred.

Worse still, when I returned home and looked at the Bridgeport Diocese website I saw that the stated goal was to protect Church property -- not priests, and certainly not the victims. Here's the legislative alert that the Bishop posted:

Much like last year when we needed your help to defeat bill 1098 that sought to reorganize the Catholic Church, we need your immediate assistance to stop the Connecticut General Assembly from passing an unwise, unfair, and unnecessary bill that threatens the property of Catholic parishes, schools, charities, hospitals, and dioceses in our state.

Called Substitute HB 5473, the bill retroactively eliminates the statute of limitation for childhood sexual abuse claims against Catholic and other nonpublic institutions. The Judiciary Committee approved the bill on March 29, and the full House of Representatives will vote on it soon.

I am disgusted by the protective, political stance this diocese has taken on many issues. For instance, three weeks earlier, the Diocese asked us to contact Congressman Jim Himes to demand that he vote against health care because it would "expand access to abortion." Again, I had to hold my spit as the priest made the announcement. I suppose if a woman is able to see a doctor for the first time in years, she just might happen to be pregnant and choose an abortion. But what about the men? The kids? The post-menopausal women? The Church was willing to deny everyone health care because of its stance on abortion.

I've been asked, "How can you remain a Catholic?" I admit, my cafeteria tray is getting a bit light. I go because it has built community support for my children (who have autism). Kind of ironic to go because of kids, I realize. I tend to march directly into fights, not away from them, assuming I can do more by speaking out than walking out.

I guess life with the sword of Damocles hanging over their heads is the price all priests must pay for the sins of the predators and criminals within the Church, and for the lack of action from the Vatican to the local parishes. I liked the Fr. Gary that I knew for one hour. I'm sad that he died under a shadow. But I will never accept that sex crimes, because they are old, should not be prosecuted.

The Censorship of Autism Treatment

2010-02-02T14:33:48-05:00

Last Thursday afternoon, The General Medical Council in London, England announced its decisions in the disciplinary hearing of Dr. Andrew Wakefield, Professor Simon Murch and Professor John Walker-Smith. The ruling was not in their favor. (You can read the official ruling HERE.)

There will likely be other posts here at HuffPost explaining the legal machinations of the GMC hearings and science behind the original The Lancet paper, now retracted. Be sure to look for David Kirby's post on the topic. If you're interested, you can read an eye witness account of the proceedings from Martin Walker, who has followed the GMC hearing from the start.

To understand the bigger picture, I highly recommend Mark Blaxill's Age of Autism post on the current scientific environment for autism research in general in which he says, "The deep and profound censorship occurring around autism science reaches depths that few casual observers can imagine. I have proof." HERE

I'd like to provide the voice of an autism Mom, hoarse from yelling into the wind for a cumulative total of thirty seven years. You see, I have three daughters with autism, ages 15, 13 and 9. Autism isn't an abstract battle ground to me. I don't write about autism to gather virtual high fives from a like minded community or to protect an industry or my own turf. My family eats, sleeps, breathes and ultimately, will die, with autism overshadowing every move we make.

When did autism go from a rare diagnosis to a disorder that affects 1 in 110 children but still warrants little to no medical care outside of psychiatric drugs and behavioral therapy? An autism diagnosis can erase a person's ability to get solid medical care. If you brought your six year old to a hospital in the throes of a seizure, the neurologists would run tests and look for the cause. When I brought my six year old, I was told, "She has autism. She has different circuitry." And then when I requested tests, I was told, "We're just not that aggressive with autism." My child has a brain and a gut and an immune system just like any other child. Why does her autism negate that?

Fortunately, there are doctors like Andrew Wakefield and others, most of whom prefer to keep a low profile as you can imagine, who can look past the behavioral diagnosis to the thrashing or sobbing child and his haggard Mom, exhausted from cleaning up bathroom accidents or cajoling a grapefruit sized BM from her anguished child every few days.

There is joy all over the Internet, back slapping and "Isn't it grand!" that Dr. Wakefield and his colleagues have been brought down so publicly. At the same time, autism is chewing through our country at breakneck speed. 1 in 250 became 1 in 166 which increased to 1 in 150 and is now 1 in 110 with no signs of abating. Schools and families are bearing the brunt of the battle today. Tomorrow, as the children become young adults and "age out" of school, you, the average Huffington Post reader, will be partially responsible for them via your taxes. The finger pointing in Connecticut, where I live, has already begun. A recent newspaper article began with, "Why is the district being punished for having too many white autistic kids?"

I implore you to consider the patients. Remember the children, young adults and older persons with autism for whom GI disorders and other medical conditions are a very real problem.

We need a thousand doctors like Andrew Wakefield, who are willing to risk their careers and reputations in order to find out what is happening to our children and how to heal them. That's what physician scientists do after all. Help and heal.

You can read more articles about the GMC hearings and the treatment of Dr. Wakefield and his colleagues HERE.

Vote A Million Dollars For Autism Today

2010-01-20T11:18:00-05:00

Remember the old saying about how different the world would be if the Defense Department had to hold bake sales to buy bombs? Well, in the autism world, we have to hold bake sales to raise money for just about everything. Autism now strikes one in 110 American children, yet receives far less funding than other pediatric diagnoses.

Today, we have a chance to win $1,000,000 for autism in the Chase Community Giving Program (VOTE HERE). I'm asking on bended knee for your vote for The National Autism Association.

Please, join our community and our friends at Autism Speaks, TACA, Autism One, Generation Rescue, SafeMinds, Unlocking Autism, The Schafer Autism Report, Autism United and many others and cast your vote HERE for NAA.

With this money, they can fully fund their Project Found, which provides grant money for GPS locator systems to prevent death and injury from wandering (or bolting) away from home. They are fighting against restraint and seclusion in our schools. They can fund the Helping Hand Grant which puts dollars directly into needy families' wallets. They can continue to help single Moms and Dads through the Family First Project. And they can offer more scholarships to their annual conference.

Thank you.

My Sleep Story: Almost Too Embarrassing To Share

2010-01-18T14:41:00-05:00

I assume you've read the headline and think I'm going to tell you about my bedwetting problem, right? Nope. My bed stays dry through the night, and will remain so for a few more years until I hit menopause and start hot flashing all over the sheets.

When I began writing for Huffington Post in 2007, Fearless Voices was both the theme of the category in which I was published and the title of Arianna's book. I had a fearless voice, and was thrilled to chime in here. But now, I feel like an outcast. Everyone is talking about how to get to sleep. How to stay asleep. How to sleep well, deeply, restfully and many more adverbs all of which imply that sleep is an elusive dream.

Not for me.

I sleep like a rock within minutes of turning out the light. It's almost too embarrassing to share. No Ambien. No wine. No Lunesta. No melatonin (although my kids get a spray of it every so often.) No warm milk .I can drink a gallon of coffee at 6:00pm and still zonk out at 10 p.m. as if on command.

I love sleep. I need sleep. My husband and I had years that stretched well past our children's infancies where we did not sleep through the night.

There was a four year seizure disorder for our eldest in which the grand mal seizures always started in the middle of the night. I slept with a Fisher Price baby monitor next to my bed for over a decade, at first for the hungry cries of my babies and then for the choking, chilling sounds of a seizure in progress. That was followed by a year long sleep interruption in my five-year-old. And then there was the two year stretch where my now 13-year-old could not sleep through the night without being with her father and me. My girls have autism -- and sleep can be an issue related to their diagnosis.

As of this moment, all three girls are sleeping through the night, or at least until 5 a.m. Close enough. Waking refreshed to the sound of an alarm clock is a miracle I'd share if I knew how.

It's not like I dig ditches all day long or do some other physical work. I kind of just get into bed. And at the risk of rubbing it in, I don't even have to turn out the light. Rolling over and scoodling under the covers will call forth an immediate visit from Morpheus.

That's my story. I don't fit in here right now because I sleep well. On that note, it's almost 9:30 p.m. You know what that means.

Night night. And I hope you can sleep tight.

Dr. Paul Offit: Pope Of The Church Of The Immaculate Vaccination

2009-11-30T11:21:29-05:00

I grew up in Boston, and am old enough to recall when the Catholic Church adamantly denied the sex scandal. Priests harming children? Sex abuse? No one wanted it to be true, and so it was easier to swallow the denials than to believe the children and adults whose lives were altered forever and who had the courage to speak out. That is, until the injured parties brought forth so much proof that the Church had to do its own digging and Catholics had to open their eyes and say, "My good God, the children and parents were right." The Church has survived and programs are in place to avoid going back to those dark times.

The November issue of Wired Magazine included a cover story titled, Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All, about vaccination. Wired, "The magazine of the digital future" writing about vaccination? The only digit here is Dr. Offit waving his middle finger at the vaccine safety community.

The article, written by Amy Wallace, a Yale graduate and freelance writer who is also a former entertainment reporter, begins, "To hear his enemies talk, you might think Paul Offit is the most hated man in America. A pediatrician in Philadelphia, he is the coinventor of a rotavirus vaccine that could save tens of thousands of lives every year."

That sets up the article, which is a really a long press release designed to make Dr. Offit look like an heroic martyr. It's also an opportunity to attack vaccine safety advocates (many of whom are in the autism community and are parents of vaccine injured children) by making them sound like dangerous crazy people.

Ms. Wallace writes about Dr. Offit, "... he boldly states - that vaccines do not cause autism or autoimmune disease or any of the other chronic conditions that have been blamed on them."

I can boldly state that I am a 5'10" blonde with a 36C chest too. (Mirror check. Not so much.)

Author and HuffPo blogger David Kirby has written extensively on the national push among federal health officials, scientists, research organizations and doctors on the need to further examine vaccine safety. His post titled, US Health Officials Back Study Idea on Vaccinated vs. Unvaccinated Children - Will Media Take Note? included this:

On Friday, February 27, a special group convened by The Keystone Center on behalf of the Department of Health and Human Services' National Vaccine Advisory Committee Vaccine Safety Working Group (NVAC VSWG) recommended appointing a panel of experts to explore the strengths and weaknesses of conducting studies on health outcomes in vaccinated vs. unvaccinated populations. The group, known as the "Salt Lake City Writing Group," said it was "desirable" to include autism as one such health outcome.

As they stated in a draft "consensus statement": (There is) a strong desire to study the health impact of the immunization schedule, potentially through a 'vaccinated vs. unvaccinated study'. Outcomes to assess include biomarkers of immunity and metabolism, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and learning disabilities. The inclusion of autism as an outcome is desired"

Will the media take note? No. Because Dr. Offit, as the Pope of the Church of the Immaculate Vaccination is going to continue to evangelize that vaccines are infallible. His skillful use of the media has made them the clergy who will protect his Church, even at the cost of children's health and future. Dr. Nancy Snyderman has been on TV daily berating Americans to get their H1N1 vaccine. She ended one interview by saying, "Forget the hysteria. Just get the damn vaccine!" When questioned by Matt Lauer about the vaccine/autism controversy, she replied, "There is no controversy Matt." Really? Check out Bill Maher's post Vaccines: A Conversation Worth Having with over 3000 comments.

The vitriol toward people who question vaccines or who report vaccine injury is startling. I had a commenter come into Age of Autism and tell us, "I hope you and all of your progeny die from otherwise easily preventable viral diseases."

Here's a fine comment from the Wired article:

Disgusting, these losers can't allow themselves to think it was their own rotten genetics that brought these mental diseases to their children so they have to blame someone else. Why this kind of shit only happens in the USA and the most primitive and backwards places on Earth?

It makes me wonder if Dr. Offit doesn't have biology on his side, the way the Catholic Church had two thousand years of respect and fear on its own.

For as long as homo sapiens have walked the earth, until just about sixty years ago when vaccinations came into wide use, mothers and fathers buried as many or more children than they raised to young adulthood. Perhaps we're biologically programmed to want to protect our children to such a degree that unless we've been badly burned, we simply can not wrap our heads around the concept that the very medicine designed to save our children, so that we can raise them past infancy, could be causing harm.

As long as magazines like Wired are willing to give Dr. Offit an open pulpit from which to preach, the gospel according to Paul will remain intact, and we members of the vaccine safety advocacy community will remain the heretics seated in the pews of the Church of the Poisoned Mind.