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!!!!
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:
Director, Autism Society of Greater Akron
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,
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.
Managing Editor's Note: Thank you to National Autism Association for spearheading this study so that doctors around the globe wake up to the ravaging effects of the autism epidemic. We all do our best to shed light on the tragedies (and triumphs) of daily life with a child on the spectrum - but doctors tend to listen best (insert cough here) to formal studies rather than to informed parents. If YOU have a child who wanders - or know someone who needs help in their household, we implore you to visit AWAARE.org.
Boston, MA – A new study published today in Pediatrics found that approximately half of children with autism wander from a safe setting, a rate nearly four times that of their unaffected siblings. The study, conducted by the IAN Project at the Kennedy Krieger Institute in Baltimore, is the first research effort to scientifically validate that elopement is a critical safety issue for the autism community. Advocates hope its findings will lead to much-needed safety measures and support for families struggling with the issue.
The study’s key findings showed that:
In 2010, the National Autism Association (NAA) sounded the alarm on the wandering issue when it made a statement before a federal committee outlining the need for wandering data and federal resources. “We began seeing a rise in wandering incidents and fatalities,” says NAA President Wendy Fournier.
According to NAA, accidental drowning caused 91% of wandering deaths from 2009 to 2011, and 23% of total deaths happened under the care of someone other than a parent. “This is not a ‘bad parenting’ issue,” says Fournier. “We hear from parents who sleep next to their child’s bed at night, or in front of the door. They live in constant fear of the worst.” Fatalities in 2012 have doubled those of last year, and in the last two weeks alone, three children and one teenager with autism have died after wandering from safe environments.
Managing Editor's Note: Thank you to our friend Chantal Sicile-Kira who allowed us to excerpt this post from Autism College.
Life with Autism: Mighty is the Fear
Two caregivers were arrested this past week in Valley Center (near San Diego, CA) for allegedly abusing a severely autistic non-verbal young man in his home. They had been in the family’s employ for over two years and were caught on videotape over a three week period.
This is a parent’s worst nightmare come true; and if it’s a nightmare for the parent imagine what it is like for the victim.
According to reports in the media, the mother, Kim Oakley, saw changes in her son, Jamey, indicating he appeared to be unhappy on the days following the men’s shifts. Kim also realized Jamey was trying to communicate something to her. When she questioned the caregivers, “They blamed everything on his severe autism,” according to newspaper reports. Kim set up a surveillance camera after noticing that the wires to a baby monitor had been cut. Videos shot over a three week period led to the arrests.
My heart goes out to Kim and Jamey and the rest of the family. Unfortunately their story is not unique and it highlights the difficulties of all families requiring caregivers and support staff for their severely autistic loved one.
How often do we hear about a non-verbal person that “his behavior is due to his autism”? Bull! All behavior is communication and Kim, like most moms and dads, know this. Watch “Autistic Cases ‘Autism Experts’ Run From” that Kim Oakley posted on YouTube. Jamey’s behaviors in this video were particularly bad because he had a Urinary Tract infection and once it was diagnosed and treated, he was better. But is took five days to get it taken care of. Read the full post HERE.
In a world where every child needs protection, Hailey Penny will always need more than most.
She trusts everyone, without condition, especially her parents and her teachers.
But by fall 2010, the once perpetually cheerful 10-year-old had spent months fearful and deeply withdrawn.
"We were at our wits end. We were literally racking our brains, in tears wondering, what's going on with our child, you know?" recalled David Penny, Hailey's father.
On an afternoon the Pennys will never forget, the "cause" came home on the body of their disabled child in the form of scrapes and heavy bruising. They were injuries, an investigation quickly confirmed, that were inflicted by a teacher's aide in Hailey's New Caney ISD Special Needs classroom.
"It hurt me," Hailey said before hiding her face in her hands.
"If I was to put bruises and marks on my child like that or any child for that matter, they would put me in jail. I would be in jail for child abuse! How are they any different?" asked David.
But in this case, the teacher's aide who hurt Hailey walked away. Montgomery County prosecutors claim they lacked evidence to convince a grand jury, the kind of proof that could have come from a surveillance camera if the classroom had just had one.
In our district school, right down the hall from the cinder block scream room, there’s a ten foot statue of Lincoln with the usual engraved quote about liberty, equality and honesty. We think the school should take it down.
According to my mother’s family tree, Lincoln is some kind of distant cousin. But the irony that the school mistreated descendants of its own mascot isn’t the reason we think the school should remove the statue. Lincoln didn’t set much stake in perceptions of ancestry—sort of the point of his legacy. The replica is just misleading.
This is a school which chased out a brilliant special education director six years ago because she tried to get the school in compliance with the IDEA (Individuals with Disabilities Education Act) for wider inclusion of disabled students. Like many wealthy districts concerned with appearances, the school spends a fortune to ship children with less-than-high-functioning disabilities out of district and out of sight rather than using funds to build state of the art programs. Some families like their children’s outplacements in private programs that they might not otherwise be able to afford; some are coerced into accepting the placements and would prefer inclusion.
In our case, the private schools also tend to be a long haul away from the community and disabled children often spend more than fifteen hours a week riding buses, sometimes on icy, poorly plowed roads. Some kids stim on bus travel—ours don’t. And considering that our district fired a bus driver for protesting faulty brakes, we drove.
Even with the high level of outplacement, the visible rate of autism among seven and eight year olds in our district is the highest I’ve ever seen or heard of—Minnesota Somali high. Since the rate in Massachusetts is already estimated to be as high as 1 in 48, this town may have a lot to hide—a spike within a spike. It could make prospective business and home buyers wonder what’s in the water. It could hurt real estate.
Whatever the reason, it was clear from the start that the district didn’t want our children in the school. At first we didn’t either; but this was due to complex health issues, not degree of disability. We saw it as a temporary measure. The children had made such enormous progress from simple changes to diet that we were concerned about food infractions and losing ground in development. We thought a high staff ratio in a private school might be “safer” in this sense. But when the children were mistreated in the private school, and we decided we wanted our children in a less restrictive environment and close to home, we discovered that private placement can be a trap: the district could use past “restrictive” placements to prevent inclusion with typical peers in the future.
This is pretty much what happened— the district took the private school’s denial that abuse had occurred at face value, falsely framing the children as “aggressive” and us as spurious reporters by way of denying “LRE” or “least restrictive environment”—sped-speak for inclusion.
For the school, denying inclusion really wasn’t about degree of disability either but that we stank of advocacy. Coincidentally, the district and the private school received a letter explaining precisely why the kids were being officially withdrawn from the private school—from the physical assault to the strip search and lack of accountability—the very day the Occupy movement was launched in 2011 and we were seen as nothing more than troublemakers trying to “occupy” the district. Knowing that our issue with the private school had been mistreatment, the district principal threatened to build a seclusion room just for our kids in an openly recorded meeting. His feet did a little dance under the table as he issued the threat while simultaneously dangling admission over our heads. By that time, the children had been out of school for more than two months and it would be another two months before the district finally relented and agreed to provide them with a Free and Appropriate Education, but only on an irregular “trial” basis. Despite the coercions, we still objected to the use of seclusion in that meeting for the record: restraint and seclusion for noncompliance are illegal in this state unless parents agree to it for supposedly “therapeutic” purposes.
According to a 2008 study performed in Denmark, the mortality rate for individuals with autism is twice that of the general population. A more recent Swedish study found the rate 5.6 fold higher than expected. Whichever is the true number, the message is clear: far more disabled die young. Among the more common causes of death such as seizure, accident and circulatory disease, asphyxiation is included among unnatural causes.
Michael Carey’s thirteen year old son was one of the victims of “increased mortality”—a euphemism for the violent death Jonathan Carey suffered at the hands of staff at the O.D. Heck state residential care facility in New York. Since Jonathan’s death in 2007, Michael Carrey has lobbied for improvements within the state’s dangerous disability system, including calling for video and audio surveillance of all special needs classrooms, on transportation, in group and residential homes.
What happened in place of the changes Carey battled for appears to be worse than nothing. The bill signed by Governor Cuomo in June created yet another go-between agency to divert calls and reports of institutional abuse away from 911 and law enforcement. The bill also gives power to the governor to appoint institutional officials and makes the prosecution of accused care workers and administrators more difficult than it already was by raising the bar from “credible evidence” to “preponderance of evidence.” Carey believes the bill was clearly intended to prevent reports of institutional abuse from reaching the justice system.
Listen to Carey discussing the bill:
Even after Jonathan’s death was covered in The New York Times, the abuse at the center continued according to care worker Mary Maioriello, who provided the Times with recordings of O.D. Heck administrators taken secretly during meetings in which these administrators fail to show much interest in or stop the assaults and systematic degradation of residents which Maioriello. After the tapes were released, the administrators were replaced.
The need for surveillance is often demonstrated by surveillance.
Managing Editor's Note: "Six years and almost a billion dollars later, Insel has not only failed to produce even one medical intervention or recommendation to prevent or treat autism, the autism rate has DOUBLED on his watch."
Imagine if children were developing life threatening cancer at the rate of 1 in 54 boys - and in six years with almost a billion dollars the committee had failed to stem the tide, refused to look at causation or prevention, and instead spent a good portion of its time diligently dickering over the curtain colors at hospice?
What can Tom Insel say to the families of the fallen children - many of them born after IACC was installed? IACC is failing the autism community. (Read more from AofA on IACC HERE. The Canary Party and major national autism organizations who demand more than epidemic dithering and denial and unrealistic neurodiversity-based decisions for our loved ones whose lives have been derailed by autism invites members of the community in protest on July 10th:
On Tuesday, July10th at 9am, the Interagency Autism Coordinating Committee will be holding the first meeting of the newly empaneled members. The Autism community will be showing up to let them know that their actions have been wholly unsatisfactory.
in 2006, Congress passed the Combating Autism Act, giving the federal government almost a billion dollars to find ways to prevent and treat autism. The head of NIMH, Thomas Insel, was appointed to lead the IACC in coordinating that effort.
Six years and almost a billion dollars later, Insel has not only failed to produce even one medical intervention or recommendation to prevent or treat autism, the autism rate has DOUBLED on his watch. Tens of thousands of reports of improvements and recoveries via biomedical intervention have been ignored and gone uninvestigated. He broke federal committee rules to strip vaccine research out of the autism research agenda. Every year the complaints of Insel's malfeasance have become louder and louder in the autism community.
His abuse of his position came to fruition this past April when he announced the new members of the IACC. The authentic autism community that is seeking to bring an end to the autism epidemic had nominated well respected researchers, doctors and advocates with impressive histories and large followings, however Insel ignored every one of the nominations, and instead seated a panel consisting of purely political appointees, four of who publicly state that they do not believe that autism should be prevented or medically treated.
That was when we reached our breaking point. A coalition of advocacy groups representing tens of thousands of families held a press conference and demanded that Insel be fired, that the current mockery of a an IACC panel be disbanded, and that HHS Secretary Kathleen Sibelius meet with leaders of the coalition to chart a path forward to actually address the autism epidemic.
The only response that we received was what amounts to a form letter signed by NIH chief Francis Collins, that was clearly written by a staffer, and that did not address any of the points made to Secretary Sibelius.
We have had enough.
Join us for a demonstration of our concern over a public health disaster that is devastating a generation of children.
July 10th, 9:00am
L'Enfant Plaza Hotel (A bitter irony, "enfant" means child in French)
408 L'Enfant Plaza, SW
Washington, DC 20024
Map and Directions
We will be demonstrating our concern to the new committee and letting them know that that we believe that the IACC as currently constituted has lost its legitimacy and its right to lead during their public comments portion of the meeting mid day, followed by a gathering in front of the Department of Health and Human Services in the afternoon.
We strongly encourage you to give your own public comments. The procedure is as follows:
Readers of Age of Autism have followed this tragic story since Harry’s death two and a half years ago. Now his parents, Jennifer (Jennie) Horne-Robert and Keith Roberts, have published a second e-book documenting his life and tragic death . Frustratingly, the long prepared inquest recorded but failed to acknowledge the terrible consequences of the inappropriately prescribed medication – notably the sixty year-old anti-psychotic drug chlorpromazine - which was administered behind the backs of Keith and Jennie, and which was known to induce weight-gain.
Many issues remain officially unaddressed: the coroner himself chose to highlight the lack of an exercise regime, but did not ask how such a drug came to be prescribed to a young man who already had weight problems, whether it was a remotely appropriate prescription for someone on the autistic spectrum and the failure of professionals to communicate with the parents. It is evident also that given Harry’s weight an exercise regime might in itself have been highly problematic. The book chronicles and documents these appalling events in detail, leaving disturbing questions about the functions of the British state, and the future of our children.
Jennie and Keith’s earlier book ‘Harry’s Story’ can also be read on-line . See also ‘Remembering Harry: The Life and Pharmaceutical Death of Young Artist’ .
By Anne Dachel
All of us have had those difficult moments while raising an autistic child. Often those around us simply don’t understand what we’re up against. I’ve had lots of experience with this because my son is 25 with Asperger’s. Even very high functioning kids have their idiosyncrasies. Much of my son’s OCD behavior has improved over the years but when he was little, he had so many rigid rules for what he would and wouldn’t do, it drove me to distraction. There weren’t a lot of kids who acted like him back then, which made matters even worse and the message I got was clear: it must be the mother’s fault that he acts like he does. I’ll always remember one Christmas when a relative, in exasperation, shouted at me, “When are you going to teach him the meaning of the word, NO?” The struggle is made even worse by all those who are quick to judge and criticize.
Recently an incident happened to a friend of mine, Maurine Meleck, that made it clear that caregivers still have to explain autism to others. Maurine lives in North Augusta , S.C. where she raises her grandson Joshua (14), who has autism. Recently, she was taking care of both Joshua and his neurotypical brother, Conner (12).
Maurine explained what happened:
“Joshua had had some minor dental surgery while Connor was at my house recovering from the stomach flu. Joshua was at the dentist for only an hour, but he had been given a mild sedative to make him calm. He walked out light on his feet and had to be taken to the car by the nurse. Meanwhile, Connor called and was dying for ice pops. I decided to run into Publix, our closest grocery store. Josh was sleepy, but not asleep. I told him to remain in the car for 5 minutes while I ran in the store to get the ice pops. (Joshua takes part in many activities without me around and I was certain that he’d be able to handle my small request.) When I returned to the car after 5 to 8 minutes in the store, Josh was gone. I panicked and called out for him--ready to call 911 due to his sleepy state. Suddenly I heard a muffled sound say, ‘Grandma.’
“I said, ‘Where are you?’
“Josh answered, ‘I'm in the trunk.’
We need a Memorial Day for American boys, girls, men and women with autism. This abuse and disregard and anger toward our loved ones simply must stop. And thank you to the military men and women who are raising children on the spectrum.
May 26, 2012 BOSTON - The mother of an autistic boy said she is outraged at the treatment her 4-year-old son received at the Russell Elementary School in Dorchester, while state investigators are looking into allegations of abuse by a teacher there.
Michelle Whitlow said her son, Deshaun, was abused at the school and called the decision by the school not to directly inform her "outrageous."
Deshaun's teacher was reported by other teachers for aggressively handling the boy and four other children on May 1, according to state investigators.
Whitlow said the school's principal never called her.
Three weeks later, Whitlow received a letter from the state Department of Children and Families supporting the allegations of physical abuse of Deshaun and the other children.
However, she said no one has told her exactly what happened.
"I am afraid someone might do something to him and he can't come home and say who hurt him. That's my biggest fear. He can't tell me if somebody did something to him," she said.
Whitlow has since transferred her son to another school.
The Boston School Department would only confirm the teacher is on paid leave.
See Video at WCVB.
Managing Editor's Note: By now you are likely familiar with the Abu School known as The Rotenberg Center in Massachusetts. Named for Judge Ernie Rotenberg (who used to play golf at my Dad's club when I was a kid and was suspected of using a foot wedge a la Judge Smails, I'm told) this school employs aversive conditioning - which means they use pain to stop behavior. It is the placement of last resort for families of children with severe, even dangerous behaviors. There is a petition on Change.org - we encourage you to leave a comment expressing your disgust that American children are treated worse than animals and terrorists. The verbiage from the petition is below. Click here to sign. Thank you.
Last month, in a trial against the Judge Rotenberg Center, lawyers for Andre McCollins played graphic video of his torture by contingent electric shock for seven hours in the name of treatment. Andre is from New York, as are the majority of the Judge Rotenberg Center’s residents (as many as 60%), where their tuition (over $250,000 per year per student) is largely paid by public funding from the state or school district.
New York Senator Martin Golden and Assemblywoman Joan Millman have filed legislation (S6294A-2011 and A9084A-2011) that would revise the social services law to prohibit any form of public funding to any school or program that uses aversive interventions, specifically naming contingent electric shock.
In the past, New York banned the use of contingent electric shock on any student from New York, but there is still a large student population at the JRC from New York supported by public funding.
If these two bills pass, this piece of legislation could potentially result in the permanent closure of the JRC. The majority of the JRC’s revenue comes directly from New York, and if New York permanently cuts funding to any facility, school, or program that uses aversives such as electric shock, which is explicitly named in the legislation.
By Jake Crosby
That was what my great-great-grandfather, first-class passenger and Civil War veteran Captain Edward Gifford Crosby (that's his ship in the photo), said to my great-great grandmother Catherine Elizabeth Halstead Crosby 100 years ago on the RMS Titanic after the ship struck an iceberg and began sinking. He rousted her out of bed and had her go into a lifeboat along with his adult daughter, my great-great aunt Harriette Rebecca Crosby. They were both saved by the RMS Carpathia. But because of the women and children first custom, Edward did not get into a lifeboat. He perished along with two-thirds of the ship’s passengers and crew instead.
With the recently reported autism prevalence of 1 in 88, the words of my great-great grandfather take on a new meaning. They don’t just describe what will happen to sleeping passengers on board a sinking ship, but rather what will happen to a sleeping nation as the autism prevalence continues to rise, as more crooked members are appointed to a federal autism committee and as vaccine industry front men continue to give public talks unchallenged. Like the passengers onboard the sinking RMS Titanic, we cannot afford to just lie there.
But this quote has more than a figurative meaning to our community. The mortality rate among people with autism is twice as high as the general population, mostly because of drowning accidents. As with the Titanic, there are real lives at stake and inaction will cost more lives. There is a modern, manmade epidemic of titanic proportions largely caused by our vaccine program, which shields vaccine makers from personal injury litigation. We do not have anything to fear of challenging people like Seth Mnookin or Paul Offit at their speaking events around the country, only what the consequences of not challenging them will bring. As long as we do not, our nation will lie there and drown in its own complacency.
Jake Crosby has Asperger Syndrome and is a contributing editor to Age of Autism. Jake is a 2011 graduate of Brandeis University with a BA in both History and Health: Science, Society and Policy. He currently attends The George Washington University School of Public Health and Health Services where he is studying for an MPH in epidemiology.
Managing Editor's Note: There is a site called Lives Lost to Autism that memorializes children and adults whose lives have been cut short by their autism - through drowning, parental murder, caregiver assault. Autism kills from the outside in.
The CDC today announced a new autism prevalence rate of 1 in 88. As boys are diagnosed with autism at four times the rate of girls, this translates to 1 in 54 boys. That new rate is an increase from the previous 1 in 110 reported two years ago by the CDC’s ADDM (Autism Developmental Disabilities Monitoring) Network. This is only the latest uptick in the autism rate reported by CDC, as the disorder was diagnosed in 1 in 10,000 in the 1960s, and the rate was virtually zero before 1930.
The Canary Party also expects federal health authorities to continue to downplay the seriousness of the skyrocketing autism rate, just as they have done for the past two decades since the rate began rising dramatically. Canary Party Chairman and autism father Mark Blaxill, drawing on his own experience working with federal agencies on autism for many years, commented, “No matter how high the autism rate soars, the CDC’s continued denial of an autism epidemic is certitude comparable to death and taxes.”
History shows us that Polio was called epidemic when the rate was only one in 2,700. The American Academy of Pediatrics recently called trampoline injuries epidemic, even though that rate was only about one in 1,200 children for the year that those injuries were reported (1996). By these measures, The Canary Party holds the position that autism should have been declared an “epidemic” many years ago. Some have offered the excuse that only infectious diseases can be called epidemic, but as the CDC has announced that obesity is epidemic in the U.S., the Canary Party believes that this leaves the agency with no good explanation for failing to characterize autism as such.
Managing Editor's Note: 22 is the age at which school services end and "adult" life begins. The article states that Mom could find no program to take George, and that he was becoming increasingly difficult to manage. Not a reason to murder him - not for a minute. But a telling look at the grim times that are likely approaching as thousands of teens march toward aging out with little to no programming in place for them. Who will fund day programs for our loved ones in these economic and political times? Our condolences to George's family. KS
Read and comment on the full story at Inside the Bay Area. Lisa Fernandez' contact info is at the bottom of the piece. Share your story and thoughs with her.
A Sunnyvale mother shot and killed her 22-year-old autistic son in his bedroom, then turned the gun on herself, according to police.
Department of Public Safety Capt. Dave Verbrugge said Wednesday that the pair were found about 7:45 p.m. Tuesday in a home in the 800 block of Nectarine Ave.
He did not disclose their names or a possible motive.
Public records show that Elizabeth Hodgins, 53, lives at 813 Nectarine Ave., with a 22-year-old, George Hodgins. A 51-year-old man also lives at the home; police say the husband was not home at the time.
Neighbors confirmed the names of the mother and son. Jennifer Sullivan, executive director of the Morgan Autism Center, said George attended the San Jose center for most of his life, starting when he was six years old.
"He was delightful," she said. "He was non-verbal, but very physically active. He loved walking and hiking."
Sullivan said that George could not talk and used a voice-output communication device for limited communication. He did not drive and "constantly was working on his independent living skills," she said. "He needed to be supervised at all times for his own safety.'' Neighbors often saw George mowing the lawn with his father, his dad's hands over his.
George stopped attending the autism center in December. Sullivan said it was because Elizabeth Hodgins told her that she wanted to find a program that was more community-oriented, where her son could be out in the world.
But one neighbor said that Hodgins told her several times in the last few months that her son was getting increasingly harder to handle, and that she couldn't find a new program to take him.
"She just couldn't do it any more -- take care of him anymore''' said Jacquie Jauch. "She was just tired and very lonely."
By Kim Stagliano
The Hartley family of Texas used hidden cameras in a group home to prove that the paid staff was assaulting their son. They caught the abuse on tape. He's 22! He is likely to have another 60 - 65 years assuming an underpaid, undertrained piece of sh*t "caregiver" doesn't kill him or allow him to wander to his death. "Taylor's autism and his size made it difficult for him to remain with his parents." Oh my God - I see teen boys at speech every week who are 5' 9" - 5' 11' inches tall and weigh 250 pounds. One boy must weigh well into the 300s. They are teenagers! That's likely a "side effect" of their medications. How long before they end up in a group home because aging parents can not care for them any longer? They are just too BIG. The adult wave is coming and the injuries, abuse and even death that will follow will grow until the mainstream world simple says, "Ah yeah, another one of those people died in a group home."
I feel like The Lorax. Anne Dachel is definitely The Lorax. Most of our readership is too. "I am an Autism Mom! I speak for our children! My husband and I have already sat with the police, the District Attorney talking about assault against our child with autism, when she was 10! Wake up America - we need treatment (put the needle on the broken record again) and yes some form of recovery for our kids. Or I fear they will end up like the truffula trees. THWACK! Unless...
An Allen couple suspected a caretaker was abusing their autistic son. But they had trouble convincing operators of the group home where he was living, as well as state authorities. So they took matters into their own hands, which led to a shocking discovery and criminal charges.
Karen and Michael Hartley secretly placed a hidden camera inside their son Taylor’s room at residential nursing home and documented an alleged beating of the 22-year-old.
“You promise this child when they’re born that you’re going to love them forever and you’re going to protect them,” Karen Hartley said of her love for her son.
Taylor’s autism and physical size, as he grew older, made it difficult for him to stay with his parents.
Managing Editor's Note: I'm noticing a trend in articles about autism, like the one below in the LA Times" of condescension and dismissal.
Look at the words of this psych expert below, 'children with autism "know how to push every button known to God,"'. Roll that around your brain for a moment. There are times when I haven't been sure my kids know what their mouths are for - honest to God - and an expert is accusing our kids of "pushing buttons" as some kind of excuse for placing a child in a box as punishment? The fact that the child often seeks a quiet space on his own doesn't excuse using his safe place as a punishment. Imagine if a professional said, " Yeah, those cancer patients with their constant puking, they sure know how to push buttons, don't they? And those dippy peanut allergy kids all anaphylactic shocky and wheezey? Real pains in the ass."
I've been accused of not loving or respecting my kids the way the are because I want to (eyes darting left and right) "cure" them of their autism. Fact is, the world is going to start hating people with autism because of the lack of medical attention to treatment, the acceptance movement that has done precious little to make our kids more acceptable and the COST to society. You start affecting someone's pocketbook, they take notice. People are already pissed off and stressed out about their dwindling finances. Now ask them to pay a couple of million over the lifetime of a person with autism and see what happens.
I don't believe our kids should have carte blanche to interrupt a classroom, especially if mainstreamed. But the anger toward kids who are on the spectrum horrifies me. Read the comment thread on the article. It's nauseating.
I noticed similar comments about TJ Lane, the boy who murdered three students in Chardon, Ohio a rural suburb of Cleveland. TJ attended Lake Academy, "an alternative education program offering a unique approach to formal education for students who are experiencing serious challenges in meeting expectations within traditional school settings. Many of the students attending The Lake Academy are considered “reluctant learners” and may be struggling with a variety of individual problems, such as: substance abuse /chemical dependency, anger issues, mental health issues, truancy, delinquency, difficulties with attention/organization, and academic deficiencies." Commenters in Cleveland are asking why a boy who had to attend a "special" school was even allowed to step foot in a public school. I understand the anger toward him and make no excuses for his actions. But the call to segregate/remove students who are different could easily capture many of our own kids (who are not violent or severely mentally ill) making them pariahs in education and by logical assumption, the workplace that follows school.
I anticipate a very rough future for our loved ones.
I started karate classes last Fall. It's supposed to make me a bit more zen than my usual type A self. Part of our code states, "I shall not use my skills outside of the dojo except in the most extreme circumstances." I look at what's happening to kids on the spectrum and I ask, "Define extreme..."
When Kim Rollins' son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project.
No, Sage Rollins explained, he didn't need the scissors for a project. He wanted them so he could cut a window in the cardboard box his teacher sent him to sit in.
Sage, 10, told her that his teacher at Ronald Reagan Elementary School, in the southwest Riverside County community of Wildomar, sent him into the box when she became upset with him. Before that, she forced him to sit in a darkened supply closet, according to Rollins.
"I was outraged. I was insulted," Rollins said from her home in Wildomar, near Lake Elsinore. "I cried when I heard.
School principal Nori Chandler told a Riverside County Sheriff's Department investigator last month that Sage went into a closet on his own, when he wanted "quiet time," and was never sent by the teacher. Sage also told the deputy he went on his own when he needed a quiet place.
The principal told the investigator that a district counselor provided a "decorated large cardboard box" for Sage that was placed in the back of the class, to provide a refuge for him when he had sensory overload, according to the investigative report, a copy of which Rollins gave The Times.
The box, about the size of a large television, was turned on its side, allowing Sage to use the open flaps as a door.
The deputy who investigated the allegations "failed to find any evidence of criminal wrongdoing," and the case has been closed, said Deputy Joshua Morales, a spokesman for the Sheriff's Department. The investigator's report said there did not appear to be any intent by any school employee to mistreat or abuse Sage.
Although she taught Sage in a mainstream classroom, Sabrina Beth MacFarlane has a state education specialist credential for working with special needs students. She has been placed on paid administrative leave by the Lake Elsinore Unified School District and was not available for comment.
"Appropriate personnel action has been taken, and the matter is under investigation," said district spokesman Mark Dennis. "We're taking this matter very seriously."
Rollins' attorney filed an administrative legal claim against the district and the teacher, a likely precursor to a lawsuit. The claim alleges that the isolation was involuntary, punitive and caused other fellow students to ridicule her son.
Alex was 5’9 and every bit of 200 lbs. He was “uncontrollable” and destroying his family’s home. We arrived to find Alex’s grandmother on the front porch. Her arms were literally purple with bruises; the aftermath of one of Alex’s tantrums earlier in the month. She directed us inside where Alex’s mother was trying in vain to calm him down. We found him in the basement lying on his back. Mom was trying to hold his hands. She was crying. She was sweating. She was bleeding. Around him were toddler toys: Elmo dolls, a ring-toss game, coloring books. There were no toddlers in the house. The toys were Alex’s. Alex was 14 years old. He had Autism.
In recent months there have been many high profile incidents concerning police using force to deal with children and adults on the Spectrum:
-Police Taser Autistic Teen and Then, After Family Complains, Return and Arrest Teen
-Teen with autism shot to death by police
-Autistic Man with Toy Gun Killed by Miami Police Officers
The most gut-wrenching of these incidents involved a young man named Stephon Watts. Stephon, diagnosed with Asperger’s Syndrome, was shot and killed by police in Calumet City, Ill on February 1st, 2012 after he slashed an officer with a kitchen knife. This incident has gained national attention and stirred outrage within the ASD community. I would like to offer my perspective.
I am a 16 year-veteran police officer. I am a police K9 handler and trainer with 12 years experience in searching for wandering ASD individuals. I am also an Autism Dad.