NOTE: A family in California is being sued because of their child with autism is, according to the suit, a "public nuisance." He has severe aggressive behaviors. And while we know that our kids can not function in the world if they harm others, we also know how difficult it can be to address, manage and ameliorate aggressive behaviors even with the best team and interventions. Just imagine how this problem is going to grow when the 11 year old turns 21, 41, 61 along with 1 in 68 peers? Thank you to AofA reader and CA advocate SP for sharing. We wish the family well. There but for the grace of God.... (California has become very cruel, don't you think?)
California is leading the way in gross injustice yet again. You may have seen the news articles about this family being sued by their neighbors, who are claiming their son with autism is a "public nuisance". The Autism Society Bay Area in CA wrote about this terrible story.
Dear Bay Area autism families,
We wanted to let you know about an extraordinary, unprecedented lawsuit against a local family that could have profound implications for all of us affected by autism.
In June 2014, two Sunnyvale couples, whose homes on Arlington Court flanked a home occupied by a nine year-old autistic boy and his parents, sued the autism family in Santa Clara County Superior Court, alleging a smattering of incidents that had occurred sporadically over the span of about six years. The incidents sound much like those that happen with many autistic children, and include, for example, that the boy had entered a neighbor's garage, had taken a neighbor’s banana, had sought out neighbors' sweets, had kicked a car (no damage), had tossed some objects over a fence, had pulled a child’s hair and had on occasion kicked at people (no injuries), and had tossed a bicycle helmet. The boy was between 3 and 9 years of age, and weighed less than 60 pounds, at the time of these alleged actions. Read more HERE.
From SP: The family is understandably devastated. They are the type to do the right thing and believe that others would do the same. They moved from their home in the hopes to leave this horror behind, but still, the neighbors are going forward with the suit. The hearing for the neighbors petitions to get the boys medical records (plus IEP's, Regional Center records, even camp records!) is this morning. Can you imagine the precedent this will set? Any disgruntled neighbor can get access to you child's most sensitive records in order to use against you in a lawsuit?
This is all to terrible to contemplate, but is the reality for this family right now.
Dear Governor Jindal:
While your presidential campaign is taking a powder, your state of Louisiana burns. As is with your failing run to the White House, the ‘Pelican State’ ranks 38th in U.S. economy in the first quarter of 2015; ranks 48th in public education by American Legislative Exchange Council (www.alec.org), which also rates Louisiana with a ‘C’ on “Homeschool Regulation Burden” and an uplifting ‘D+’ in academic state standards; and ranks “near the bottom” of Politico’s 2nd annual State of the States of the Union report, measuring 14 economic indicators across all 50 states.
Bravo! What will you do for an encore?
Beyond your name being headlined in articles coming up only twice in the top ten searches of www.politico.com, a political magazine you should care about if you hold serious presidential aspirations, you have torched a red hole in the state’s budget close to a billion dollars, as revealed by The Times Picayune, Bobby Jindal’s Shipwrecked Presidential Campaign: Robert Mann.
I would be splitting hairs if I focused only on your (poor) conservative record and (so-called) fiscal acumen. This letter is about Louisiana’s special education in general and autism in particular. As the neurological disorder sits today in your state, autism incidence grows at a staggering rate of 258 percent—that kind of growth must make you envious from an economic vista—according to health statistics compiled by www.statemaster.com. When combined with your failing education standards, it makes a visitor to your state, like me, and those who makeup the close to five million people who live in Louisiana, wonder if you are cut out for the job of being governor, let alone be the next president. Well, are you?
July 28, 2015. Yesterday was the 5th anniversary of Mason's death. We lost three children with autism to wandering and subsequent drowning last weekend. Where is the public outcry? The media breaking news? The AAP missives warning parents about how to save their kids' lives? Many of us at AofA and the majority of our readers have children, some are adults, for whom wandering, bolting, eloping, call it what you will, is a life threatening cloud that never dissipates. Our hearts and prayers go out to every family who has faced this tragedy.
Managing Editor's Note: We honored Sheila Medlam earlier this week (HERE) for her unfathomable strength following her young son Mason's death by wandering and drowning this past summer. She created a Foundation in his name to protect others. That's the meaning of strength, love and mettle. It moves our community forward and teems with positive energy. It shines in stark contrast to the negative factions who fight and write for base and self-serving reasons. Sheila sent this thank you, and we decided to highlight and share it with each of you, our fellow travelers on this journey. Happy New Year, friends. KIM
Thank you so much for recognizing our voices and our passion. It is wonderful to know that Mason lives on through such wonderful people who not only love my son, mourn his loss, but understand how quickly our lives were changed. Over the past few months there have been a few, very few thankfully, that have said, "How could this happen? This family is responsible. This family is negligent." Those few can never understand the pain and sorrow that we live with every second of every day, but all of you do. You have never asked those questions because you see your children in my son's beautiful face and you understand how our world was destroyed in the blink of an eye. It is very easy to share Mason with all of you. I can not bear to let him go. I can not bear to let the world forget him or let his memories fade. He lives on in all of you and I am forever in your debt. Thank you for allowing us to become a part of all of your families. Thank you for remembering Mason and keeping him alive in all of your hearts. You will never know what you have all done for my family. You saved us. You gave us the strength to live when we didn't know how we would be able to. Thank you all so much. It doesn't seem like those words are even adequate for all you have given, but they are all I can offer. We love you all so much. Sheila Medlam and family
By Kim Stagliano
Not every story on Age of Autism deals directly about autism. Sometimes we just profile the sheer stupidity and callous disregard of people who should know better. We did this a few months ago with a State Senator who made a joke of vaccine injury. On camera. His office read our post and apologized. We ran the apology. No need to link any of it here. Water under the bridge.
Today's subject is one William Coats, attorney at Vandeberg, Johnson & Gandara law firm, and attorney for the Clover Park School District in Washington State. A family was awarded three quarters of a million dollars in a sexual assault case involving their ELEVEN year old daughter with special needs. Mr. Coats failed to see how an assault could possibly harm a girl whose IQ is below 70. As if low IQ, cognitive deficits, mental retardation, call it what you will, means no emotions or feelings or basic humanity. It does not.
The district admitted it was negligent in its supervision of the boy, but its attorneys argued at trial that the girl deserved damages of no more than $50,000.
“Given her cognitive ability, it is unlikely the girl experienced many of the psychological issues customarily associated with sexual assault, such as feeling guilty or damaged,” the district’s attorney, William Coats, wrote in his trial brief.
Another child with autism has died. Autism is an American epidemic; more so than measles, more than whooping cough, more than crib bumpers, more than [insert fear of the week product with actual liability recall here.] Many of us live with the fear of our children, from 5 to 15 and older wandering off, bolting into harm's way every single day.
No safety awareness. Not responding to name when sought. No internal "I should get back to Mom or Dad, I've wandered away!" And a homing device that compels them to water.
If you are really and truly against a cure for the children of those of us who would give our souls to the devil for one - I invite you look at this Micnael's face and ask yourself, "What the hell is wrong with me?" God rest his soul and bring his family solace.
From Bay News 9 Plant City, FL
Deputies have located the body of a missing 5-year-old autistic boy in a Plant City pond.
By Kim Stagliano
A special guest was in attendance at the State of the Union address on Tuesday night. Her name is Vanessa Fontaine, and while the name might not ring a bell, you surely remember the name Avonte Oquendo. Ms. Fontaine is Avonte's Mom. Senator Chuck Schumer of New York invited Ms. Fontaine to the SOTU address to stand as an example of the tragedy of autism wandering and the lack or protection for our children from toddlers to teens and beyond, and to create awareness and support of Avonte's Law. We are grateful to Ms. Fontaine for putting a face on the worries and very real fears of so many of us in the autism community.
Long before this evening of Presidential pomp and circumstance, one autism organization has been toiling in the trenches to create not just awareness of the safety issues in autism, but acting to prevent injury and death. That organization is National Autism Association. They work quietly and efficiently. Sometimes too quietly - as is the halmark of a "doer" and not just a "Rosie Ruiz."*
We're going to remind you until we are blue in the face, NAA is making a difference for the autism community. From the NAA blog:
In an effort to gain support for Avonte’s Law, U.S. Senator Chuck Schumer (D-NY) announced Monday that he has invited Vanessa Fontaine, mother of Avonte Oquendo, to attend the State of the Union Address Tuesday evening according to news reports.
Avonte’s Law would offer protections to prevent – and respond to – wandering incidents, namely in the autism community. The legislation would allocate funding towards assisting families of special needs children in need of tracking devices, as well as provide other services, such as first responder training and education.
By Kim Stagliano
I read this story in the NYT with sheer horror, followed by a searing sadness. A 21 year old student with autism choked to death while at school. On a muffin. From the article (which you can read here.):
The New York City Education Department is investigating the death of a 21-year-old student with autism who choked on a muffin at her school in Brooklyn at lunchtime on Tuesday.
The student, Dyasha Smith, was nonverbal and wore diapers, according to her mother, Catherine Smith, 70, who took Dyasha in as a foster child when she was 3 and later adopted her. She said her daughter was supposed to have full-time supervision on the bus and at her school, Star Academy in Cobble Hill.
She said she had told the school’s staff members that they needed to cut up her daughter’s food, because otherwise she would put too much in her mouth at once. “She will take a handful of something and put it in her throat and swallow it at once,” she said, adding, “She’s like a child, like a baby child.”
Does this sound familiar to you? It sure does to me. I cut my kids' food. I worry about every lunch I pack. In fact, just last year, one my daughters choked on her lunch - and a quick thinking, well trained paraprofessional performed the Heimlich manoeuvre on her - saving her life. SAVING. HER. LIFE. Do you want to know what she was eating? Apple slices. I remember slicing the apple that morning and asking myself if they were too thick for her. "Nah, they seem OK," I told myself. She almost choked to death. My daughter.
Note: Reserve your tickets for the Westbury, NY screening of Who Killed Alex Spourdalakis on November 12 HERE.
Many of you will remember the horrifying case of Alex Spourdalakis, a teen with autism who was held in restraints in a Chicago hospital with precious little medical care. And whose mother and caretaker, in a moment most of us can never fathom, murdered him brutally upon his release.
There is a documentary about the tragedy of lack of medical care, parental/caretaker exhaustion and autism called "Who Killed Alex Spourdalakis." The documentary won New York City Oktoberfest Film Festival.
It is a tough story to tell - to read - to watch. It was disconcerting to watch the process unfold. So many reached out to help. To no avail. Alex is neither the first nor the last person with autism to meet a terrible death. His mother is not the first or the last to commit a murder that is anathema to our maternal and paternal souls.
Thank you to Sharyl Attkisson for keeping Alex's memory alive. I receive frequent emails from parents with nowhere to turn, no one to help as their sons (and daughters) grow older, strong, sicker and their behavior becomes more dangerous and difficult to manage. There is no system in place for our aging children. The future is bleak - unless we take a hard look at the worst case scenarios - like Alex Spourdalakis' death. Like Sky Walker who bludgeoned his mother to death many years ago.
On October 4, 2013, Avonte Oquendo eloped from his autism school in Queens, New York and vanished into thin air. His remains were found in January, in the icy waters of The East River.
Avonte was just one of many children, from tots to teens, who has died as a result of his or her autism. Safety is of paramount important in our community. There are orgs trying to promote safety, encourage programs and spread the world that autism is indeed deadly - from the outside in, which is to say, every bit as deadly as some cancers.
Our friends at National Autism Association are leading the way in safety with their Big Red Safety Box program. That program is currently "open" for families to apply for a FREE safety kit. Kits are available on a first come, first served basis and include:
1) Our Get REDy booklet containing the following educational materials and tools:
A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter
A Student Profile Form
2) Two (2) Door/Window Alarms with batteries
3) One (1) RoadID Personalized, Engraved Shoe ID Tag*
4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband
Click HERE to apply for a kit or to make a donation to this life saving program. Thank you.
Reserve your ticket today for the October 16 Dallas screening of "Who Killed Alex Spourdalakis?" A unique insight into how ignorance, negligence, and indifference in the US healthcare machine lead to the tragic death of a severely autistic Chicago teen, and a charge of Murder One for his mother and godmother.
Thursday, October 16 7:30PM - 9:06PM at AMC NorthPark 15 & IMAX 8687 N Central Expy Ste 3000, Dallas, TX, US, 75225
Order your ticket today HERE. The screening has a ticket sale requirement - please share this info with family and friends and invite them. Thank you.
Visit this site to see if there's a screening in your area - or request one.
An amazing woman by the name of Melanie Hamilton Baldwin changed the face of autism and cancer culture by telling her story to thousands as "Booty Kicker" in the Thinking Moms' Revolution's book Autism Beyond the Spectrum. Having once beaten breast and bone (hip) cancer; she now suffers liver, spine, and bone cancer in her other hip. For anyone who knows Melanie, two words come to mind. "Faithful" and "Godly." As she struggles to overcome her current issues, her severely affected son Luke, still requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism. Please consider donating generously to help her family care for Luke as she regains her health, and please help their family establish financial security that will help them thrive during her absence.
DONATE HERE NO AMOUNT TOO SMALL.
By Anne Dachel
Like most everyone out there, I get a lot of information from my Facebook page. So many articles and videos that I would never be able to search out for myself, instantly appear there. I really appreciate what my 4,100+ "friends" post to me.
I recently found this: Life with Autism in Pictures: The lion who had no courage.
The photo really needs no words. It's a mother with her disabled son. The young man in diapers is the side of autism we never see in feel good stories during April, Celebrate Autism Month. The photo made me think of Michelangelo's Pieta, the Virgin Mary grieving as she holds the body of her crucified son, Jesus. Or maybe one of the Mary Cassatt paintings of a mother and child. The image of this maternal bond is universal. It's also heartbreaking when it involves someone who was left like this because of the vaccines he received as baby.
The young man is Brandon Guppy, age 20, shown with his mother, Michelle. Michelle has the blog, Life with Autism in Pictures,
where she writes about her son. More importantly, she shows us photos of what his life is like.
"On my 'Life with Autism' blog, it is my hope that the words you read are inspirational in some way. But on this blog --- I wanted it to be different. I wanted the pictures to be more powerful than the words. Here will be some of our most powerful pictures in our 'Life with Autism' - with only a few words to explain..."
Monday, Sept 8, 2014, Michelle posted, "The lion who had no courage" that reads like a journal account. She specifically addressed members of the media, admonishing them to cover this issue honestly and thoroughly.
"Doing away with vanity & dignity tonight.
"I'm sure Brandon would forgive me if perhaps it would make one member of the mainstream media try and help him... I doubt they'll ever see this, much like I doubt today's seizures would be the last. But, one can hope....
"He's had seizures yet again today...and finally at 8 pm he tried to get up. He's been on the gymnastics mat on the floor of his bedroom right where he landed from the first seizure in falling out of bed this morning. Most parents have the luxury of waking up to the sound of an alarm. I frequently wake up to the sound of choking, some body part banging against the wall, or a loud thud as he hits the floor. I met him in the hallway and by the look in his eyes I knew we better go back in his room and not dare try and go downstairs. It's hard to describe seeing your child like that...."
Michelle criticized the media for failing to report on the CDC whistleblower scandal.
...When Todd got upstairs from hearing him have a seizure, I asked him to take this picture. I want the media to see who it is they are silencing by refusing to report on the CDC Whistleblower story. I want them to see just how "vaccines save lives" actually plays out in real life. I want them to see what the trade off of acute recoverable illnesses for chronic lifelong debilitating illnesses looks like. And as much as they try to ignore it, that trade off does have a face. And there are thousands of them. I want them to see this and be brave enough to look me in the eye and ask me which I would rather my son have had - a miserable two week ugly rash in measles that would provide a lifetime of immunity and a stronger immune system for having survived it; or a lifetime of illness and seizures and a weakened immune system. And I want them to show that answer to the world.
I want them to see who they have forsaken as an accomplice to their preservation of Pharma's fairytale illusions of health, herd immunity, and the greater good.
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.
Kim Stagliano is Managing Editor of Age of Autism. Her new 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.
Managing Editor's Note: I'm pretty jaded after 18+ years in the autism/vaccine injury community, but this story, this horrible story knocked me for a loop. Imagine this horror in a Catholic nation, on innocent children, under the "care" of the religious and ask yourself, "Could that happen today - in a world of medicine for profit?" Has the current vaccination schedule ever been tested for cumulative safety? Do we know the long term ramifications of delaying common, survivable childhood disease such as chicken pox and measles? Are children circa 2014 healthier than their peers decades ago? Also, Dan Olmsted informed me that Diptheria was the first mercury preserved vaccine in the 1930's.
Thousands of children in Irish care homes at centre of 'baby graves scandal' were used in secret vaccine trials in the 1930s
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Scientists secretly gave 2,051 children and babies diphtheria vaccine. They were used as guinea pigs for drugs giant Burroughs Wellcome in 1930s. Academic Michael Dwyer uncovered shock truth in old medical records. He found no evidence of consent, nor of how many died or were affected. Comes as Irish PM intervenes from U.S. over scandal of mass baby grave. Hundreds of babies are believed to have been buried at former baby home
Enda Kenny says he's ordered his officials to examine 'if there are others.'
Read more: http://www.dailymail.co.uk/news/article-2650475/More-mass-baby-graves-Ireland-Prime-Minister-Enda-Kenny-orders-investigation-memorial-800-dead-babies-planned.html#ixzz33u7e6Bte
On Tuesday, April 29, 2014, Danny Alger, age 37, went to heaven. He was surrounded by his mother, Joyce, and father, Ed. Danny got to see God knowing that he was loved.
Danny Alger is one of the most important people our community has ever known.
In case 89-31V, Special Master Paul T. Baird ruled Danny “sustained an encephalopathy, the first symptoms of which appeared within three days of the second DPT vaccine that he received on March 27, 1977.” The injury left Danny with seizures and developmental delays.
And the vaccine injury also left Danny with autism.
Danny Alger was one of the first cases to be decided by a hearing in the National Vaccine Injury Compensation Program (NVICP). It was a tough hearing but Ed, Joyce and their Attorney, Cliff Shoemaker, proved their case and managed to get Danny Alger compensated for his injuries.
The Algers weren’t trying to prove that vaccines caused Danny’s autism. Autism was barely understood in the late 1980’s because it was so rare. The Algers needed resources to care for Danny and managing his seizures was a never ending struggle. Autism was just another issue and a rare behavioral diagnosis is not your primary concern when you are fighting to keep your child alive.
Eventually, the money from the settlement ran out. It was never really enough and there is no way to petition the NVICP for additional assistance. Ed and Joyce went about their lives, took care of Danny, raised their other children and like all of us, did their best.
No one from the NVICP ever contacted them again. It seemed Danny and his family were supposed to fade into the fringes of the American landscape. It seemed they were supposed to become invisible.
Danny Alger was one of the first cases where the federal government, grudgingly, compensated vaccine injury victims. Danny was one of the first of those cases that also featured autism. As the years passed, there would be many more. The government wanted those cases to be invisible too.
I found the Algers after reading through dozens of old NVICP case decisions while doing the research that ultimately resulted in the publication of Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury, 28 Pace Envtl. L. Rev. 480 (2011). Ed and Joyce were the first people I called and it was one of the most remarkable conversations of my life. One of my sons with autism was making a racket while I was talking with Joyce and she just happened to mention that Danny used to make all sorts of noises because he also had autism.
Amazingly, Danny Alger was no longer invisible.
By 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!
Managing Editor's Note: We in the autism community have been watching the Justina Pelletier case with horror (there is no softer word) as Children's Hospital of Boston took the teen from her family earlier this year. Dr. Keith Ablow, popular psychiatrist, had this to say about the case on Fox. You can link over to the FOX site to read the full post - we choose to excerpt - but the final paragraph is critical:
Yet, I also know that a teenager has been taken from her family. I know that she was once a figure skater and has, since her time at Children’s Hospital, been photographed in a wheelchair. I know that she reportedly passed a note to her parents recently that accused the hospital of abusing her. And I am absolutely sure that if the medical records or other evidence cannot prove beyond a doubt that Linda and Lou Pelletier placed Justina in mortal danger by virtue of their psychopathology or willful negligence as parents, Children’s Hospital should be brought to its knees by paralyzing civil suits and criminal complaints, and the Commonwealth of Massachusetts should be exposed for what it may have become: a state that, under the determined leadership of Gov. Deval Patrick (who, by the way, threatened to jail anyone driving during a snowstorm this winter), teeters on the brink of abandoning all pretense of individual freedom.
Dr. Keith Ablow is a psychiatrist and member of the Fox News Medical A-Team. Dr. Ablow can be reached at email@example.com.
My Dinner With The Familyof Justina Pelletier
In case you’ve ever wondered, when you take a psychiatrist to dinner (especially a forensic psychiatrist, like me), he doesn’t leave the office 100 percent. No well-trained psychiatrist can. The “third ear” we develop during training – the one that catches meaningful turns of phrase or attempts to be evasive – can’t be left at the office door entirely.
When I had dinner with Lou and Linda Pelletier and three of their four daughters, Jennifer, Jessica and Julia, a few nights ago in Massachusetts, I wasn’t trying to evaluate them. They aren’t my patients. But I was listening for discordant psychological notes, nonetheless – ones that might tell me I was sitting with people destructive enough to merit permanently losing custody of their teenage daughter Justina.
For anyone who hasn’t heard the story, the Pelletiers brought Justina to Boston Children’s Hospital early last year for a consultation related to complications from what they had been told was mitochondrial disease, a complex and controversial physical disorder diagnosed in Justina by doctors at New England Medical Center in Boston (and with which another of their daughters has also been diagnosed). Instead, the Pelletiers were told by a doctor who intervened in her consultation that Justina had no physical ailment, but was, instead, suffering from somatoform disorder – physical symptoms caused not by underlying bodily abnormalities but by underlying psychological issues.
The Pelletiers did not want to leave Justina at Children’s Hospital, but they were not allowed to take her home. She was seized by the hospital, which asserted the Pelletiers would not accept their daughter’s obvious psychiatric disorder and, therefore, clearly would impede needed treatment. Courts in Massachusetts have agreed, recently awarding permanent custody of Justina to the Massachusetts Department of Children and Families (DCF).
By: Inas Younis
Its takes strength to hold on, but it takes even more strength to let go. But I am a mother and I could only do what came naturally, and so I held on. I held on as tight as I could without hurting him. I held him when he tried to jump out of moving cars. I held him when he tried to attack the neighbors. I held him when he tried run out into streets. I even held him as a form of therapy known as holding therapy. And although he is now gone, I am still holding on, and I just don’t have the strength to let go. Whoever said mothers are strong, did not really understand the meaning of strength.
But now the time has come. Blinded by tears, and deafened by an inner voice which keeps reminding me that mothers never give up on their children, I am going to let go. But before I do, I must throw myself before a jury of my peers and ask for their forgiveness. I know what you are thinking, only God can forgive me. But I don’t need forgiveness from God, for he has been on and by my side since day one. He was there while I screamed and cursed at the heavens for making my son autistic and epileptic. He was there when I begged for a miracle every day for ten years straight. He was there for the countless sleepless nights when my son screamed in pain. He was there when my son had his first seizure. He was there when I had my first panic attack. He was there then, and he is here now. I don’t need his forgiveness, for there is no sin in coping. And I do not need forgiveness from my fellow man, who was completely oblivious during the beatings, the fecal smearing, the screaming, the property destruction, the insanity and horrors of my life which I hid from their innocent eyes and ignorant hearts. No, what I need in order to let go, is forgiveness from a jury of my peers. A jury of mothers who have suffered some measure of the horrors I have for the last sixteen years. For only they can understand, and not because they have been through it, but because many of them are still going through it. They are my heroes, and after you hear my story, they will be your heroes too.
So please allow me to plead my case , starting with the most obvious defense. I tried everything!
Was I aggressive enough with his therapy, his special diets, his medications, you ask? Well let me see if I can remember, because as most of us mothers with special needs children know, we all suffer from a bit of amnesia. It’s our brain’s way of dealing with trauma. I think there is an acronym for it called PTSD. The world of autism is full of acronyms. There is GFCF, SCD, ABA, ASD, IDEA, ESY, and my all time favorite, WTF. But luckily, I kept very detailed journals, so no worries. Of course at the time, I kept them because I was trying to decode the mystery of autism and in my case severe autism. I micromanaged his every bite of food, supplements, medications, and therapy in an effort to isolate cause and effect and determine patterns of behavior. But no patterns emerged except for one; I was going crazy. I submit to the jury the following Journal entries.
October 2003: I am in autism hell, which right now means hiding out in my bathroom while the devil has his way with my son. According to my notes the only thing I introduced in the last couple of days to his supplement protocol is an orange flavored fish oil. Therefore, no more orange flavored fish oil. Note to self: use alternate fish oil. To do list: email the following fish oil companies until I find the purest fish oil known to man.
From our friends at the Autism Action Network.
The worst fears of many were confirmed with the positive identification of remains found washed up on the Queens’ waterfront as those of Avonte Oquendo, a 14-year old boy with autism who was allowed to wander away from the Riverview School in Long Island City on October 4, 2013.
Avonte was non-verbal and assigned to a classroom of six students with one teacher and an aide, which In New York would indicate it is a self-contained class for the most impacted students. According to published accounts, Avonte wandered away from his classmates and aide or aides in the school cafeteria, he then was challenged but not stopped by a school security worker as he left the school. School personnel did not determine that Avonte was missing for at least an hour and then they waited another hour before contacting the police department.
We are calling for a full investigation by independent entities into the multiple failures of the New York City Schools that lead to Avonte’s death. If Avonte’s mother had allowed Avonte to wander away from home she would at the very least be the subject of a child endangerment investigation. Therefore, we are calling upon Queens County District Attorney Richard Brown to launch an investigation into the possibility of criminal negligence on the part of New York City employees responsible for Avonte’s safety.
Queens County District Attorney
12501 Queens Blvd.
Jamaica, NY 11415
The New York City Council does not have much power but it can launch oversight hearings.
Managing Editor's Note: Yesterday a news alert came in - the remains found in NY had been positively identified as Avonte Oquendo, missing 14 year old with autism who ran out of his school unsupervised (but not unseen) by staff. We've been praying for his return since October 4, when he vanished into thin air - not an easy feat in congested Queens, NY. Most of us whispered under our breath, "Water, go to the water, he went to the water." Well, today we have his return - not what we wanted - but as a Mother, I think there must be some comfort in being able to bury your child and know you can still watch over him, even in death. To the Oquendo family, our heartfelt condolences. There but for the grace of God and a stroke of luck go most of us and our precious children. RIP, Avonte. Love, Kim Send condolence cards to:
The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
New York, NY 10107
By Cathy Jameson
Last week, worry gripped my heart as I read that body parts discovered off the shore of the East River appeared to match that of a missing NYC teenager. Missing since October 4, 2013, Avonte Oquendo wandered from his school. Accusations and assumptions about how he was able to leave unsupervised are still being investigated. Answers from that investigation may take time, but after months of wondering where Avonte wandered can finally be answered. Several days after the grim discovery of bones and some clothing items, DNA positively identified the remains as 14-year old Avonte. Words cannot express how sad I am for his family.
As the mother of a child with autism who is prone to wander, the possibility of a fatal outcome because of wandering is never far from my mind. Ronan has gotten away from us before, but has been recovered quickly and with a far less search and rescue endeavor as Avonte’s search required. Because I know the fear that comes with this sort of situation, each time I hear stories of children with autism wandering, I try to pray. For month, I prayed for Avonte and his family as did many of us. My prayers changed Wednesday. Tears and sadness accompanied them. The more overcome I was, I stopped praying. I just couldn’t say any. The reality of autism and of this devastating situation has become far too common and more than I could bear.
Autism affects a great many. Autism can change a life, and sometimes in a way that is anything but positive. Autism and wandering is not uncommon. Autism is difficult, costly and consuming. Autism can bring a family to its knees in a moment’s notice. And what was confirmed again this week, autism can be deadly.
Avonte Oquendo has been missing in New York City since October 4th when he was allowed to bolt out of his school. Please take a moment to remember him, pray for him if so inclined, and for his family too. Christmas is about finding a safe place for your baby, is it not? Let's hope for tidings of great joy for the Oquendo family - and soon. Merry Christmas. Kim
I am 19, a freshman Motion Designer at Ringling College of Art and Design, and I have an older brother with low-verbal autism. Currently, I am enjoying a long winter break after a successful first semester. My projects for 4D were among the featured, and I am excited for next semester because I will be learning traditional animation techniques, and learning stop motion.
Anthony is never far from my mind, even when I’m away at college. When I heard about 14-year-old Avonte Oquendo being missing, my heart sank. The feeling got worse as time grew along with my anxiousness after two months of him being missing. Personally, these kinds of stories where children end up missing, especially when they are unable to communicate, are the stories that upset me the most. I think of Anthony, and how vulnerable he is because he’s low verbal. These stories are the reason that I try to strive for success for both of us, because I want to avoid the possibility of danger and heartbreak. Some of the students do not understand why I am so driven. I consider attending Ringling a privilege, and nothing is more important to me than the work.
About two weeks into being at Ringling, I broke my left foot while working. My camera was raised on a tripod, and I had to step on a chair to look through the viewfinder. I suffered a metatarsal fracture stepping down off the chair. For two months, I was in a medical scooter, restricted from walking. Despite the injury, I loved my classes, and my teachers were pleased with my work. I was happiest when I was working, and called home frequently to let my parents know I was okay and enjoying college. My mother was concerned that my broken foot would interfere with my adjusting to college life, and I wanted her to know that I was really all right. My teachers were so encouraging that the phone calls were to share good news more than anything else.
Despite the fact I was happy, getting all my work done, and coping on a medical scooter, a couple of freshmen felt the need to impose their opinion on me. My mother has told stories of strangers approaching her with judgments and opinions about Anthony. Anthony is physically beautiful, so many questioned his level of disability. She often said she had to endure thoughtless comments from people that didn’t understand her situation. Little did I know I was about to get a taste of those thoughtless judgments.
A couple of students (who incidentally offered me no help and showed no desire to socialize with me) took it upon themselves to question why I called home so much. I attempted to explain that I was happy, our family dynamic is different, and that we have always worked together to manage Anthony and his autism. Because we’ve always worked as a team, we do not have an adversarial parent-child dynamic. Those concepts do not apply in our house because the autism doesn’t care. I had hoped for understanding, and received judgment instead. They did not want to consider my special circumstances, and insisted I wasn’t coping. One person actually said, “But your brother isn’t here,” and insisted that she read in a book that my behavior was unhealthy. Dumbfounded and annoyed, I responded with, “Most general books do not address families with issues like mine.”
Note: You might recall the terrible beating death of Dr. Trudy Steuernagel, a Kent State (Ohio) professor who had written a letter to be opened in case of her death at the hands of her growing, strong autistic son. He is in an institution at this time. Details are unfolding in Ireland about a case of another son (allegedly) murdering his Mother. Susan Dunne was an autism advocate who reached out to others in neeed. I fear we will see much more violence as the pediatric autism populations ages into full adulthood. Violence in both directions. Those suffering from autism, pain and behaviors lashing out at those around them - and parents (and caretakers) alike reaching the darkest corners of their psyche and murdering those in their charge. The epidemic is not a gift. It's not just a difference. And to gloss over it as if it was any such thing is to be complicit in a future that is anything but bright.
By Anne Lucey of The Irish Times
A man has appeared before the District Court in Killarney, Co Kerry charged with the murder of his mother at their rural home near Listowel.
Arresting officer Detective Sergeant John Heaslip told the court he had formally arrested and afterwards charged Patrick at Listowel Garda station on Thursday night. The accused made no reply to the arrest, charge and caution.
The State’s application was to remand the accused in custody to St Patrick’s Institution to appear again in Listowel next Wednesday, Listowel Garda Supt William Leahy said.
Listowel solicitor Patrick Enright said he was making no bail application but was putting the State on notice that he would be doing so.,
The solicitor said he had been in touch with the HSE regarding provisional services to meet his client’s needs if he is released on bail.
He was asking that his medical needs be met and “particularly for special cognisance” given to the particular needs of this young man.
FROM 10/17/13: We've been following and updating the Avonte Oquendo story on our FB and Twitter feeds. In case you have not heard, Avonte eloped from his school in Queens, New York and has not been seen since the 4th.. His family is moving heaven and earth to find him. Officials have stopped train work - Avonte loves trains and there is the hope he is alive somewhere in the subway or commuter train system.
Please send out good thoughts, prayers if you are so inclined, and alert anyone you know in New York City, New Jersey and Connecticut that Avonte may have boarded a train and been transported away from his family.
Facebook Page Missing Avonte Oquendo
From ABC New York:
LONG ISLAND CITY (WABC) -- The desperate search for Avonte Oquendo continues, as the reward was increased to $70,000 for information leading to his safe return.
On this Halloween, there is a family in New York hoping for a treat - 14 year old Avonte Oquendo eloped from his school in Queens., NY on Friday October 4. There has been no trace of him since, despite weeks of searching and a $95,000 reward.
Wandering is a huge problem, a life threatening issue in our community. Toddlers to teens and as the population ages, we'll hear of 20 somethings wandering.
If you want to help - this is from the Find Avonte team. The photo on this post is the flyer. Right click it to download and save. Also, there is a petition to start an AVONTE ALERT for autism in New York - view it HERE.
MISSING Flyers are a continued need at the search site! If you are willing and able to donate flyers, please mail to Jennifer Prevete, 402 Graham Ave. #147, Brooklyn, NY, 11211 or drop off at the command post at 1-50 51st Avenue, Queens.
Flyers in the English, Spanish, Mandarin, Cantonese and Bangladesh languages are needed most. They may be downloaded and printed from the photos section above. Thank you!
Wed, October 30, 2013. Avonte Oquendo is still missing! He is 14 years old and has the mind of a young child. He is autistic and mute. He needs your help to get back home. Please get out and search. He was last seen wearing dark blue almost black jeans, black Jordan sneakers and a grey striped shirt. He is afraid of strangers and likes to hide. If you see him, do not approach him, call 911 IMMEDIATELY and follow him at a distance. Do not let him out of your sight. Thank you for your help and your vigilance in searching, it is greatly appreciated! Spread the word. Tomorrow is Halloween, there will be millions on the streets, let's Bring Avonte Home!!!!
Managing Editor's Note: We have had the grim task of informing readers of three children with autism who wandered and drown in May. And now - a fourth. Freddie Williams, of Webb City, Missouri. Our condolences to his family. From our hearts. Please support the National Autism Association Big Red Safety Box program. From KOAM-TV:
The story of a missing boy takes a tragic turn as police report the child's body was found early Thursday morning. More than a thousand people searched the Webb City area Wednesday night for Freddie Williams, 14, but despite their best efforts, he was found Thursday at about 8 a.m. in a private pond off of Madison, just north of Webb City High School. Authorities say he apparently died from drowning.
It's just autism.
It's just three beautiful children. Two sons and a daughter.
It's just autism.
It's just three beautiful children. Two sons and a daughter.
Laurie Cramer of Autism Society of Akron was quick to explain the realities of autism in the article. She contacted us at Age of Autism and asked us to share with readers that the there is a fund for burial costs for Andrew Howell.
(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,
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.
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.
Managing Editor's Note: Below is a sobering look at the future for many familes as exhaustion of mind, body and savings in conjunction with intense care for an autistic adult child becomes untenable. The moderate to severe autism population has few options in our current disability systems. Competitive employment might be a stretch, day programs are often "daybysitting" at best, and housing options are limited, if available at all. The media is starting to wake up to the flood of children headed toward age 22 and the ramifications for state and Federal budgets alike. Not to mention the very real human toll of pain, heartache and worry.
"I'm no longer able to provide supervision." Listen to this Mother - she is decribing the autism so often overlooked - intentionally - by organizations and the media alike. Really listen to her - she is knowledgeable, up to date on how to care for her son and broken hearted. She is us.
Light it up true.
By Anne Dachel
A Tragic story out of Canada
It started with this story on April 26, 2013, Canadian TV: Decision to drop off autistic son gut wrenching says Ottawa couple.
Watch the video here: Exclusive: Couple leaves autistic son in care of the state
(Her adult son with autism functions on the level of a two year old.)
"Decision to drop off autistic adult son 'gut-wrenching', says Ottawa couple:
Watchi this video and listen to the mother talk about how Philippe recently wandered away. He is in need of constant supervision.
"Philippe requires nursing care for his diabetes as well as his bathing, toileting and personal care. His food intake also has to be strictly managed because of his diabetes."
"Parents of autistic adult son not alone in their desperation, say advocates"
Managing Editor's Note: For information on wandering and an action tool kit called The Big Red Box, please visit National Autism Association's AWAARE program.
By Mark Bucknam
It was Tuesday, April 25, 2011, a beautiful warm spring morning in Potomac, Maryland, a suburb of Washington DC. At John’s house, a radio alarm clock sounded at 5:45 a.m., softly delivering the news of the day, growing gradually louder. John’s dad quickly silenced it, wanting to allow his wife another 15 minutes of sleep before her alarm signaled the start of her day. Raising John, a moderately autistic adolescent, required a team effort by his parents. John’s dad awoke first to prepare vitamin and dietary supplements that doctors believed John needed to compensate for deficits in his metabolism—deficits common among autistic children. Mom would follow soon after, to make sure the kids were properly dressed and fed before getting on their respective school buses.
A few weeks from his 15th birthday, John had the functional intelligence of a boy half his age, but none of the emotional intelligence. That was autism…or at least the manifestation of autism in John. Every autistic person is different, though many share similar intellectual deficiencies, quirky behaviors, and most tellingly, social deficits. They lack interpersonal skills.
Like his older sister, John had bright blue eyes and red hair, though his was cut fairly short, hers was long and curly. John was 5’8” tall, trim and solid at 140 pounds. He usually slept well, but was full of nervous energy during his waking hours.
It had not been a good night. John had barged into his parent’s bedroom at 2:30 in the morning, fully awake. His groggy parents teamed up to coax and cajole him back to his own bed. His mom stayed with him a while, until he settled down and seemed ready to go back to sleep, before she headed back to her own bed. John’s dad ventured downstairs to the first floor to check the lock on the refrigerator and the lock on the door from the den to the garage to make sure that they were locked —these were the two locked doors that the family used most often and most likely to be accidentally left unlocked.
For John’s safety, everything had to be locked, either to keep him out of it—like the refrigerator, the kitchen pantry, the basement, and the guest bedroom—or to keep him from getting out of the house through it—like the front door, the patio doors, and the door from the den to the garage. The locks were identical, excepting for the one on the front door. They were all small combination locks with three rotary wheels containing numbers from 0-9 used to set the combination. All of the locks were set for the same combination—a number that marked the month and day of John’s dad’s birthday.
Downstairs early that Tuesday morning, John’s dad turned on the coffeemaker and a small TV, which quietly detailed world news. He measured out John’s morning supplements – making sure not to confuse the morning batch of vitamins with those John would get in the afternoon, or the ones he would take just before bedtime. By 6:00 a.m., John’s dad climbed back up the stairs and quietly slipped into John’s bedroom.
John’s bed was empty.
Any expressions of concern from anybody with the power to do something about this disaster? No . And the press, as usual is soft pedaling the findings. Fifteen years ago the autism rate was 1 in 10,000, 12 year ago it was I in 2,500, 10 years ago it was 1 in 1000, and so on. When President Obama was elected in 2008 the official rate was 1 in 150, then it went to 1 in 88 and now it is 1 in 50. Where is it going to stop?
And Thomas Insel, the federal “Autism Czar” who heads the Interagency Autism Coordinating Committee, is still wondering, “If there is a true increase in children affected...” Thomas Insel needs to be fired. He is clearly not up to the job.
In 2008 presidential candidate Senator Barack Obama promised to be the “Autism President.” But what has he done? We are spending far less in research per diagnosed person than we were under George W. Bush. The only generally recognized method of addressing autism, applied behavior analysis, was left out of the essential health benefits package in Obamacare. And as we enter his fifth year in office the CDC still can’t even figure out if the rate is really going up. I am reminded of the song by Stevie Wonder, “If you really want to hear our views, you haven’t done nothing. “
Please send an email to the President, your two United States Senators and your member of the House and ask when are they going to take the autism epidemic seriously and do something. We suggest a start by firing Thomas Insel.
And you might want to call the Whitehouse and ask politely when the President is going to become the “Autism President,” and he should start by firing Insel.
Managing Editor's Note: Thank you Jim Mulvaney for taking an active role
in protecting not only your son, but all of our children. Jim is married to author, journalist and HuffPo blogger Barbara Fischkin. I consider Barbara my writing Godmother and am always grateful for her and Jim's work. Jim wrote an opinion piece for the Washington Post about the death of a man with Down Syndrome. John Jay College also acknowledged Jim's piece - Adjunct Professor James Mulvaney’s Op-Ed on the Death of a
Developmentally Disabled Man in Police Custody Published in the
"I am the father of a young adult with severe autism. In 2007, I joined a team of educators, health professionals, parents and law enforcement officials to create a manual for first-responders in dealing with developmentally disabled subjects. The manual was adopted by the Nassau County, N.Y., police department, and its officers received mandatory training. The manual has been distributed to departments around the country and modified for local needs...."
By James Mulvaney, March 08, 2013
Where is the public outrage over the death of Robert Ethan Saylor, killed in January while being taken into police custody in Frederick for the crimes of petty larceny and, perhaps, disorderly conduct?
Saylor, 26, had Down syndrome, a genetic defect that can cause cognitive deficiencies, poor judgment, impulsive behavior and other issues. Unlike many other disorders, it is associated with recognizable physical traits, especially unique facial features. Photographs show Saylor to have had the classic “Down” look.
He had gone to the movies to watch “Zero Dark Thirty,” a charged film about the raid and assassination of Osama bin Laden in Pakistan by Navy SEALs. Like many others who have seen this film, Saylor wanted to watch it again, so he remained in his seat when it was over. His health aide had stepped out of the theater temporarily.
When Saylor refused to leave the theater, a conflict arose, and three off-duty Frederick County sheriff’s deputies — working as freelance security guards at the shopping center where the theater is located — intervened.
Please read the rest of the article at the Washington Post website:
Politely tell them you are calling about the lack of medical care for Alex Spourdalakis in the Loyola Healthcare system. They need to receive as many calls as Loyola did 3 days ago. They need to know what is happening behind the doors of the institutions they are accrediting.For background, read The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center and our original post, Day 19: Chicago Hospital Locks Down Autistic Patient.
On Sunday morning, Jeanna Reed of AIM (Autism is Medical) and I visited Dorothy and Alex Spourdalakis, who are now on their 21st day in the Loyola Healthcare System. (From left, Jenna, Godmother Agatha, Alex, Lisa).
The restraints have been removed and replaced with a nameless security guard dressed in scrubs and a charge nurse by the name of "Debbie" who wore no identification. They sit in a dark corner of Alex's room beside the door, in silence, until he emotes.
"Don't spit Alex! Don't hit Alex!", the guard barks like clockwork as Alex rises from his bed and lumbers toward him.
The phone and call light have been removed from Alex's room as both were considered "safety concerns." Dorothy must now leave the room to make a call, leaving Alex unattended.
While the security guard remained a constant, another nurse we could not identify by badge entered and left. A physician who referred to himself as "the hospitalist" and a colleague came in to examine Alex.
By that time, he'd awakened and was moving about the room, grabbing food and attempting to speak. While the staff would not allow a phone or call light, a set of silverware, knife included, was present on a meal tray.
With an air of affability completely inappropriate for the occasion, the colleague smiled at Alex and told him he was going to examine him. With little protest and a few pulled chin hairs, he was able to briefly listen to Alex's lungs and midsection.
As the mother of a child with autism, I was wondering how Alex was keeping it together. As he rocked naked on a bed amidst a room full of strangers, he presented only sensory problems, which he self-regulated by chewing on a strip of sheet from his bed. Despite Loyola's advertisement of medical professionals that are "always in reach," there was nary an autism specialist among the group. No therapists. NO BCBAs to educate the staff handling him. No occupational therapy. Not even a chewy tube to help facilitate his need to bite.
One of the nameless nurses questioned Dorothy's judgment in allowing Alex to chew on a torn piece of sheet. "I'm just concerned he'll choke" she said. With an educational and articulate tone of authority, Dorothy explained how the sheet was soothing his sensory needs. Instead of justifying his behavior, or lashing out at her ignorance, Dorothy simply educated her. When Dorothy speaks, though, most staffers gaze at the floor and roll their eyes.
UPDATE 3/9: Fox Chicago ran a story on this situation and Philly picked up this story, read and watch video here.
Managing Editor's Note: Loyola Medicine in Chicago, IL has as its tagline, "We also treat the human spirit." But they forgot the ending, "..like a dog."
Email Ann Dillon in Media Relations with the link to this post. Tweet them our link @LoyolaHealth. Share our link on their Loyola Health FB page.
Vice President and CNE, Paula Hindel 708-216-3802
CEO Larry M Goldberg 708-216-3215
By Lisa Goes
Patient Safety Awareness Week, Spotlighting Loyola University Medical Center: A Parent’s Perspective
“I need to tell you Alex’s story.” Dorothy Spourdalakis, Alex’s mom spoke professionally with a deliberateness I was not expecting—considering she has been by Alex’s bedside awaiting proper medical care for his gastrointestinal symptoms, for 19 days.
19 days. 456 hours. 27,360 minutes. 1,641,600 seconds.
This is Alex.
The irony of this week marking The National Patient Safety Foundation’s “Patient Safety Awareness Week” is not lost on Dorothy. According to her, at 14 years of age, Alex has a diagnosis of severe autism and cognitive impairment. He is non-verbal. In October of 2012, Alex began to suffer neurological events that prevented a healthy sleep cycle. He was awake for many hours at a time. Agitation and aggression ensued as a result of sleep deprivation. During this time, symptoms and behaviors that were indicative of severe gastrointestinal distress developed as well. A cycle of constipation, diarrhea and formed bowel movements surfaced and became a chronic problem. On February 16th at 5:00 am, with the assistance of police and paramedics, Dorothy took her inconsolable and highly-distressed non-verbal child to Gottlieb Hospital in Melrose Park, Illinois.
Because of Alex’s physical aggression, he was placed in locked restraints. At that time, Dorothy did not know the ER would be their home for the next several days, as Alex lay naked, in locked restraints, suffering bouts of violent vomiting, severe constipation and diarrhea. Neither she nor Alex bathed for the next 13 days while hospital staff and administrators attempted to devise a plan to care for Alex. “He was given Colace for his constipation and sometimes it would take security staff and nurses more than 15 minutes to arrive to help unshackle him so he could use the bathroom,” Dorothy explained. “Alex would scream as best he could when he knew he was going to have a vomiting episode, but security took several minutes to respond so Alex would lay in his own vomit, waiting to be released by a representative of security. He would be wiped down and returned to the same restraints.”
Autism Is Medical (AIM), a support group that helps parents
identify the underlying medical issues
associated with the label of autism, was contacted on Sunday, February 24th. They were enrolled to help the staff at Gottlieb understand Alex’s complex medical profile. According to one of the AIM representatives, “Clearly, what they are doing isn’t working.” The AIM advocates,(all mothers to children fully recovered from iatrogenic autism), went on to say, “Currently, this child is being treated with Lorezepam, Oxezepam, Benzatropine, Zyprexa and Ativan. These drugs do nothing to address the intense gastrointestinal issues he is experiencing, nor do they alleviate his pain.” Dorothy explained that Alex remains in a highly-agitated state. He was also prescribed Depakote, to which he had an adverse reaction (elevated lipase). In addition to these issues, Alex’s mom explained he has many allergies. Both physicians at Gottlieb and Loyola told her that IgG and IgE food sensitivies were invalid. Dorothy was told by the attending physician to give her son milk at Loyola, not in the ER. When a possible reaction occurred she was told the bed caused his contact dermatitis.
On Febrary 22th, 2013, Office of Council member Vincent Gentile issued a press release calling for the removal of all New York students of the Judge Rotenberg Center in Canton, Massachusetts.
Councilman Gentile is no doubt serious in his campaign to pull New York students and funds from the Judge Rotenberg Center and sincere in his outrage at the school’s aversive and dangerous practices. The following is not meant to express cynicism towards this particular effort and it would be a certain victory for human rights if this campaign succeeded where others have failed. Most have probably noticed by now that, despite repeat major media exposés, clusters of blog criticism, ineffectual clicktivism and even a request filed with the United Nations Special Rapporteur on Torture in 2010 to protest human rights violations, the Judge Rotenberg Center has weathered most storms.
But if the Rotenberg Center didn’t exist, what would the people and organizations instrumental to sustaining the epidemics of childhood developmental disorders and chronic disease moralize about in order to prove they don’t always defend institutional policies? What would those who profit by and suppress constructive solutions for these epidemics point to in order to comparatively diminish how their actions contribute to disaster and the mounting toll of failing health and mortality among American children?
As an estimated three or more individuals with special needs are killed every week in US schools and institutions due to abusive practices; as the news reports more and more children with autism arrested in schools, brutalized by police, denied organ transplants, found face down in ponds and subjected to a lottery for services; and as disability services around the country are trimmed to the bone; as the US drops to #49 on the world infant mortality index; as 1 in 8 children of Somali immigrants in Minnesota are diagnosed with autism and the national rate soars beyond the official 1 in 88; as toddlers are drugged with increasing frequency; as the vaccine schedule continues to expand and the drum beat of denial over a host of potential environmental causes and co-factors involved in the rise in disability in the US grows louder, in terms of the mainstream mismanagement of what may be one of the worst medical disasters in history, to be the “leper with the most fingers,” you might have to find another “leper” with stumps in place of arms.
That bar is kept low as long as the JRC exists. To be a champion of children’s rights and a hero for the disabled, all any mouthpiece has to do is criticize the Rotenberg Center. Meanwhile Matthew Israel, the center’s founder, smiles the wistful, knowing smile of the contracted fall-guy and extortionist. And the center—founded in 1971 and renamed for the judge who defended the institution against the first wave of attacks on it the year the autism epidemic was launched and the year Prozac was first marketed—has endured all the while.
The low-cost way to explain the mystery of the JRC’s endurance: whenever the next crusader in a long line of crusading bureaucrats attempts to shut down the “school of shock,” a handful of parents of the center’s students go up into arms and protest that the Rotenberg Center provided the only therapy that stopped their children from injuring themselves or others, from smearing feces on every surface or otherwise acting like crazed animals.
This explanation is favored by both those who defend the institution and those who want to be perceived as protesting it alike. But even those who genuinely protest the center’s practices are either blind to the machinery which has sustained the institution for so many decades or loathe to commit the politically suicidal act of addressing it. The latter are probably the most hypocritical if they grub for humanitarian “creds” while still performing the table-cloth trick of leaving in place the factors which feed the school. But even the sincere may eventually throw up their hands as they start stumbling over the skeletons pouring out of every dark “closet” that surrounds the issues of disability and institutional abuse in the US. At least in the past, official demands for long term research on outcomes for the JRC’s specific practices have tended to fade to whispers over and over again.
Sadly, the airing of the now infamous JRC torture video and the
perpetual wilting of each round of public outrage in the press might be used as
a kind of litmus test or even public inculcation exercise: if the public sees
the video and reads of the campaigns to close JRC and the center is not closed
forthwith this time, this can be bureaucratically interpreted as a sign the
public tacitly approves and will allow it.
But even if current campaigns finally succeed, the Rotenberg Center is a hydra: closing the center without investigating the real reasons it’s endured cuts off only one head. The same abusive practices will crop up, even if by stealth, in other institutions. Again, why?
CITY HALL – In light of recent developments, Councilman Vincent J. Gentile, a long-time advocate for New York’s most vulnerable, is calling on New York City Department of Education Chancellor Dennis M. Walcott to remove all New York children from the infamous Judge Rotenberg Center in Canton, Massachusetts once and for all.
The Centers for
Medicare & Medicaid Services (CMS) sent a letter to the Massachusetts
Executive Office of Health and Human Services saying it would no longer allow
federal Medicaid money to be used by anyone who lives at a facility that
employs electric shock intervention, even if that person is not receiving the
treatment themselves. Massachusetts has begun notifying the families of its
students that they must either move to a new facility or unenroll from state
“CMS made the right decision – no federal tax dollars should be going to an institution that uses these electric shock techniques on children. It’s time New York State and New York City to do the same – no city or state money should go to support an institution which subjects its students to these cruel and unusual forms of ‘behavior modification’. The Rotenberg Center in Massachusetts where 120 NYC developmentally disabled students currently attend, is in gross violation of the most fundamental standards of humane treatment of people with disabilities”, Councilman Gentile said. “With CMS pulling its funding, we are one step closer to shutting down Rotenberg once and for all.”
As a New York State Senator, Councilman Gentile introduced legislation to mandate oversight and accountability when developmentally disabled students are sent out-of-state for education and treatment. Then, in late 2009, Councilman Gentile sponsored “Billy’s Law” which requires the Department of Education to provide the City Council with bi-annual reports monitoring all out-of-state residential facilities that house New York State children for specialized educational services – both pieces of legislation passed unanimously.
By Andrew J. Wakefield
Patterns in chaos: understanding acts of “senseless” violence (also available at The Academic Integrity Fund site.
At the Royal Free Hospital, London, in 1996 my gastroenterology colleagues and I were reliably informed by our attending child psychiatrist, that acts of extreme violence, such as the tragedy of Sandy Hook Elementary School, were perpetrated more commonly by those with Asperger’s syndrome (AS). Like so much that child psychiatry has had to offer - then and since - this assertion is misleading.
In support of his statement, the Royal Free’s child psychiatrist, Dr. Berelowitz, cited the example of Martin Bryant who had recently been imprisoned for committing 35 murders and causing 37 serious injuries in Tasmania in April 1996, in what became known as the Port Arthur Massacre. Bryant, according to Dr. Berelowitz and later, Wikipedia, had AS. Both sources turn out to be incorrect: the report of Paul E. Mullen, Professor of Forensic Psychiatry at Monash University, Melbourne, Australia, who examined Bryant in prison in May 1996, tells the story. In his criticism of an earlier diagnostic assessment by a Dr. Sale, Dr. Mullen wrote:
“Mr Bryant craves the attention of others. He desires relationships but fails to effectively communicate with others unlike the patients with Asperger's who are blandly indifferent to others. Mr Bryant also lacks, in my opinion, the central features of this condition, which are repetitive activities, unusual skills with all absorbing obsessive interests and problems with motor coordination. He also showed marked delay in the acquisition of language skills and required remedial therapy for this language deficit which is contrary to the picture found in those with Asperger's Syndrome.”
While my experience of 18 years suggests to me that many with AS are not blandly indifferent to others, Bryant’s speech delay precludes this diagnosis. In addition, Bryant had an IQ of 66 – well below the average or above average IQ that experts consider necessary for this diagnosis..
More recent reviews of the relevant medical literature do not support an association between an increased risk of violence and AS.. This fact is crucial, lest the wider community stigmatize a population of individuals that are already poorly served and badly misunderstood by many. This does not mean, however, that those with AS are not at increased risk of violence under certain circumstances, as discussed below.
A further Web-based review (see below) of acts of violent crime similar to those seen in Port Arthur, Colombine, and Connecticut reveals that the majority of cases are not associated with any evidence of an ASD diagnosis in the perpetrator at all. So what do these tragedies have in common?
A common denominator
As with all tragedies of this nature, many try to make sense of the “senseless.” In the case of Martin Bryant, Dr. Mullen failed. He concluded his expert psychiatric report with the following:
“The enormity of Mr Bryant's crimes call out for some explanation equally dramatic and extraordinary. It is not to be wondered at that the media have either attempted to portray Mr Bryant as afflicted by a dramatic mental illness, such as schizophrenia, or to be some kind of evil genius. In my opinion the origins of this terrible tragedy are not to be found in a single dramatic and sufficient cause, but in the interaction and combination of a range of influences and events. We may never know fully the intentions and state of mind which led to the killings, but a number of the contributions are apparent.”
I am a newly single
mother facing the daunting task of reentering the work force and trying to earn
a college degree while still being a good mommy to my two kids. We are new to the area we live in, because of
the move, because of the end of the marriage.
So when I found out that in Hall County (Georgia) Schools there is after school
care that takes place at the school run by the YMCA I was very grateful. My son Logan, who is on the spectrum, and my
daughter began attending the after school child care program at their school
when I recently found a job.
Before the YMCA accepted my son into the childcare program I had a conversation with the program director and on site staff about his condition and they seemed understanding.
My son’s special education teacher and I met with the YMCA staff to discuss that he exhibits elopement behaviors, a common symptom of autism. This simply means he will try to leave an enclosed space.
The YMCA staff member assured me they would not allow my child to leave and that they would provide an additional staff member -- so where normally there are two adults, they would add a third -- for supervision on the days my son was scheduled to attend. However, when they were picked up, there was never another staff member there.
On Wednesday, October 24th the staff at the YMCA called a meeting with me. First I was asked to pay extra to keep my son in the program, and then I was told that he was no longer allowed in the program. Previous to this meeting there had never been any notes sent home about behavior incidents. There were only two voicemails to me in one day alerting me to the fact that he had tried and failed to leave the building.
The director of the After School programs told me in the meeting the reason for his dismissal was that he was a flight risk due to his autism. Once outside the meeting room and in front of additional staff and YMCA patrons, staff members denied having kicked my son out. I asked several times whether they could attend that day but all I got was pleas to discuss it privately. It must have been very embarrassing for them. Admittedly, I was upset and even told some poor girl who was only there to apply for a job that she would soon be working for a company that doesn’t allow kids with autism to their programs. They had been in the program for just over two weeks.
Falling, written by Deanna Jent, is a play now running in New York, off Broadway. Autism, like many difficult topics in America, is often sanitized to the point of saccharine caricature. Not Falling, which brings the audience into a home with a severely autistic man - an 18 year old boy. Perhaps it's your home? (Photo Julia Murney and Daniel Everidge star in 'Falling,' now playing off-Broadway. / AP/David Gersten & Associates)Here's part of the review from The Asbury Park Press by Bill Canacci: Sometimes we need more than statistics to help us understand. That is likely why Deanna Jent wrote “Falling,” a powerful new play about how a couple copes with their 18-year-old autistic son.The numbers tell one side of the story: One in 88 children have been identified with an autism spectrum disorder. For boys, it’s 1 in 54.But in 75 minutes, Jent gives audiences a glimpse of what families touched by autism likely have to go through every day.
This sounds like a Lifetime movie, but don't be fooled. "Falling," which has practically crept into town from the Mustard Seed Theatre in St. Louis, is an unflinching and unsanitized drama about family life with a severely autistic 18-year-old boy.
Directed with enormous sensitivity and edge by Lori Adams, Deanna Jent's exhausting, strangely exhilarating new play deserves to be far more than a destination for autism fundraising benefits and people with personal investment in that isolating world.