Water is Jumping (Life with Autism)

Tempus Fugit

2012-12-21T18:21:00.002-05:00

When I was 13, asked my dad what the inscription on the face of the Grandfather clock meant and was informed, "It means 'Time Flies' Jimmy." He paused and then, looking at his feet quietly said, "Tempus Fugit...It's a warning."

It's been over 3 years since I last updated this blog. Timothy is now 13, his brother is 12, I lived for a time in beautiful Minnesota 550 miles away from home, and my dad was eaten alive by cancer some two years ago.

His younger brother has been officially labeled "gifted and talented" by the public school system. He breezes through any text, any subject, and is invited to birthday parties; while his older brother Timothy struggles with subtraction, reads probably at a 3rd grade level on good days, and is never invited to birthday parties. For Tim, time is something to be planned for in discrete units as he meticulously parses out events that are meaningful to him on the calendar in the kitchen while the gap between him and his brother widens more each day. ( Tim has a fascination not unheard of among autisitics: calendars and dates. He often surprizes us by giving the date instantly of a future day, like two weeks from the day after tomorrow.)

Like any proud parents we display the creations of each: huge, complex geometric designs precisely drawn by our youngest during his "M.C.Esher phase" share space next to clumsily lettered work sheets by Timothy showing addition of two digit numbers, done last month in school.

I try to peer forward...10 years, 20 years, 30 years to see what is in store for my kids. I see my youngest successful and happy, perhaps making his way in his young adult life with an advanced degree from some university I cannot afford to buy lunch at let alone pay tuition. I see Timothy....Happy? Frustrated? Sad? Alone? Confused and terrified by his kaleidoscope world and forgotten by time?

Those years yet to come, if I've learned anything in 1/2 a century, I've learned those years will be like a tsunami...quietly rushing forward, quietly building out on the unformed, gray ocean of time. Then suddenly, entwining, and overwhelming with lightening speed before turning and dragging us all out to sea.

How do I ensure Timothy can make his way, as we all must, in something like that?

As I leave the shores of my first 1/2-century 3 years behind; my dad's comment, uttered when he was the age I am now, stands dimly glowing through the twilight of 40 years gone: "Tempus Fugit...It's a warning.''

Tim, age 13 doing a 1,000 piece jigsaw puzzle. This is something he will not stop at until it is completed.

Letters to Mom and Dad

2009-03-12T21:57:00.013-04:00

Letters to Mom and Dad, by Tim, age 9 PDDNOS, diagnosed at 3yrs

"Jj is coming to vist you house. Jjs uniform is purple at the school every day. Jj went to school and do calendar. Jj loves to do math. Jj loves toys. Jj loves to ring the bell. Jj loves to clean up his toys . jj sits on the red circle. Jj is going to eat snack. At recess we go outside and play ball. Jjs uniform has the numder five on the back. He loves to line up. He goes inside. Pack up go home. Jj will pack up. And will try it nextime nextime. Ok will try nextime."

-Tim, circa 3/2009

It's been awhile since I've updated this blog....busy, busy year. Tim has been in a day school for autistic children for a little over a year. The school is a Godsend, recommended by one of Tim's home aids when the "Parent Directed ABA at home" fell apart (More on that later...).

He's also taken to the internet...surfing for hours for pictures of cars. We finally had to disable the printer after the first one simply burned up...worn out from his attempt to print the entire internet.

The past few months we noticed that cryptic type written notes were appearing around the house. It was obviously Tim...no one writes like that and he was bringing them home from school. We would ask him about them and he would provide the stock answer, "Very good.". We thought they were either random forays into "hit key, see letter" stuff...after all Tim has applied labels to every item in the house: "door", "wall", "ceiling fan"; but they started taking more form.

It finally dawned on us...these were not part of another attempt to label everything (only more neatly) and these were not created with a teacher patiently coaching him. No, this was Tim trying to communicate on his own.

Hours typing "Mitsubishi", "Ford", "Dodge", "Chrysler", "Honda" along with every other make and model of every car on the road had paid off...and he's gotten good at it. So we started asking Tim to write about his day by saying, "Tim, write a letter to Mom and Dad about....(usually his day at school.)"

All those thoughts had been building up and like water looking for a weak seem, found it in typing. Now, his two index fingers work the keyboard over like steam-powered, iron hummingbirds jackhammering some hapless flower.

Tim, mystery boy of few words is quite the chatter box with a keyboard, it turns out.

"I went to school and I WENT to see dr lteif I hand fun at school today. I went to see dr lteif. What is your favorite part. I like that too. My favorite part was fun. Thaks for helping. This is my car my favorite car is a Suzuki firenza wagon. Mommy will get a Suzuki forenza wagon and its blue. French fries today. I han fun at school today. What is your favorite part. We hand fun at school we did math and uno and some reading today "

-Tim 3/12/2009

Ephesians 4:2

2008-01-23T19:46:00.002-05:00

"With all lowliness and meekness, with longsuffering, forbearing one another in love;"
-Ephesians 4:2

“I’ve terminated the life of my autistic child,”
-Father of an autistic boy
Police Report 11/23/2006

***

The following reports represent collectively and separately the worst nightmares that we, the parents of an autistic child can have...made worse because they are all true.

They are horrible in their cruelty and stark in their testament to how some charged with the task of caregiver succumb to a fight that the "other" world has no idea about...that other sunny world where the dinner table discussion is about Little League, who's-friends-with-who at school, and getting homework done...not about living under a Damocles sword of funding cuts, medication adjustments, an indifferent public, screaming meltdowns in public, and spirit-crushing regressions.

The victims are often different in ways so far beyond the comprehension of the unexposed and the level of brutality inflicted so horrendous as to approach the point of a hideous fiction. One must wonder if their tormentors ever saw them as remotely human or even worthy of the life granted them.
To us they are not fiction because we know that there are many more humanity-blind "caregivers" are out there. There always will be.

My colorful, demanding, unpredictable, overly emotional, seemingly crazy, certainly wacky and often wonderful son...what waits for him in the future?

We all must play the hand we're dealt, there is no excuse for those who fail to do so. I make no excuse for the perpetrators. I do not care how rough they had it, how stressful it was, how alone they were in their fight. They failed themselves, the one that loved and depended on them, all of what they were here to do. They Failed.
The reader is warned.

***

Distasio was arrested on charges he molested two disabled boys he was tutoring at his home. He's also accused of raping seven other autistic children at a Cleveland school for special-needs students, The Plain Dealer reported. All but one of the boys was under 13,

...two of Distasio's victims were so helpless they could never tell anyone what happened.
"The defendant describes acts in which he had autistic children and he did what I would call sadistic sexual acts with these children," said Mason.
http://www.nbc10.com/news/9621055/detail.html
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83% of women with disability will become sexual abuse victims with disability in their lifetime -Alberta Committee of Citizens with Disabilities, 20025.
http://www.child-abuse-effects.com/sexual-abuse-victims-with-disability.html
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Autistic boy kept in New Brunswick jail
No other place for him to stay 13-year-old must go to U.S. hospital http://www.canadiancrc.com/articles/Tor_Star_Autistic_boy_kept_NB_jail_19OCT05.aspx
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A mother has pulled her toddler out of a Livingston Parish school after he was paddled, reportedly by his teacher. To make matters worse, the little boy is autistic and his mother says he can't get the care he needs at home.
http://www.wafb.com/Global/story.asp?S=7613338
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The jury saw McCarron's hospital room confession, videotaped just two days after her three year old autistic daughter Katie died. On the tape McCarron is seen hunched over on the side of her hospital bed holding her husband's hand. She spoke softly while telling a Morton police detective how she suffocated Katie with a white, plastic garbage bag. On the tape the defendant said "I just wanted autism out of her life." ^http://centralillinoisproud.com/content/fulltext/?cid=5801
For more on the murder of Katie McCarron by her mother (a physician in Illinois)http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=5749
Photos of Katie McCarronhttp://www.notdeadyet.org/docs/mccarron/mccarronphotos.html
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Four unlicensed therapists, were charged in the death of Candace Newmaker, a 10 year old girl who died during "attachment therapy" in Golden, Colorado. It's not the first time that a child died because of so-called "holding" or "rebirthing" treatment for emotional disorders.They were convicted in April, 2001
http://www.healthwatcher.net/Quackerywatch/Attachment-therapy/
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Autistic boy dies during controversial treatmentWednesday, August 24, 2005
By Karen Kane and Virginia Linn, Pittsburgh Post-Gazette
A 5-year-old Monroeville boy died this week during a medical treatment that's being touted by some as a cure for autism.

The autistic boy died while receiving chelation -- an intravenous injection of a synthetic amino acid known as EDTA, for ethylene diamine tetraacetic acid. The Food and Drug Administration has approved the practice only to treat heavy metal (such as lead) poisoning. The treatment is becoming increasingly popular, though still controversial, for autism.
http://post-gazette.com/pg/05236/559444.stm
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Autistic Boy Is Slashed to Death and His Father Is ChargedBy AL BAKER and LESLIE KAUFMANPublished: November 23, 2006

A severely autistic boy was found slashed to death in a bathtub in his Bronx apartment yesterday morning after his father called the authorities to report that the boy was dead, the police said.

“I’ve terminated the life of my autistic child,” the police said the father told officers who responded to the call.
http://www.nytimes.com/2006/11/23/nyregion/23slash.html?_r=1&oref=slogin
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Autistic boy killed during exorcism - News and Comment
Kevin Christopher
The Committee for the Scientific Investigation of Claims of the Paranormal (CSICOP) has been following the latest case of an exorcism-related death at the Faith Temple Church of the Apostolic Faith in Milwaukee, Wisconsin. On Friday, August 22, 2003, eight-year-old Terrance Cottrell, Jr., who suffers from autism, was wrapped in sheets and held down by church members during a prayer service held to exorcise the evil spirits they blamed for his condition.

According to the New York Times, "[h]is shirt was drenched in sweat when the church members who were holding him down, saying they wanted to rid him of demons, finally noticed that he was dead. He had urinated on himself, and his small, brown face had a bluish cast."
According to the medical examiner, there was extensive bruising on the back of the little boy's neck and it appeared that he died of mechanical asphyxiation from pressure placed on his chest. Pat Cooper, the boy's mother, told investigators that she held down one of Terrance's feet, while other women held down other parts of his body. Ray Anthony Hemphill, the preacher who led the spiritual healing service, held the boy's head and body down. Cooper said Hemphill's knee was pressed into the boy's chest at one point, but Hemphill, who weighs nearly 150 pounds, said that he at times lay on top of the boy, chest to chest. About two hours into the praying and the struggling, Hemphill got up but Terrance was sti
http://findarticles.com/p/articles/mi_m2843/is_6_27/ai_110575754/print
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Advocate criticizes use of stun gun: Autistic man's death unnecessary, he sayshttp://www.chicagotribune.com/news/local/northwest/chi-0511300206nov30,1,5290050.story?coll=chi-newslocalnorthwest-hed

Cunningham "never had a history of violence but was sensitive to people touching him," said Moss, who also is executive director of United Cerebral Palsy of Illinois. "The force likely caused more agitation to Hansel. It's common for people with autism to be sensitive to sounds, to bright lights, to touch. "This type of force was not needed, the action was not necessary. The restraint was not protocol. Apparently the police were aware it was a home for autistic adults. But perhaps the police weren't framed or trained in less violent techniques.
Chicago Tribune
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Charges filed against dead toddler's day care operators.
Misdemeanor charges have been filed against the owners of a defunct child day care following an investigation into the death of a 2-year-old autistic boy last year. Randie Wilhelm and Vickey Stauffer were charged yesterday with injury to a child, resisting or obstructing an investigation, and failure to report child abuse. Police allege that Michelle Bott-Graham, who is 39, hurt Cameron Hamilton when she was treating him for autism at her home on November 29th... Cameron died December 5th of severe head trauma.NBC Newschannel 6
http://www.neurodiversity.com/murder.html
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Coroner probes halfway home death.
Gilpin told the family that three people were holding him face down on the kitchen floor - one on each shoulder and one on his legs - when all of a sudden he stopped breathing and his body went limp.
http://ont-autism.uoguelph.ca/Coroner_probe.html
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Death of Michael Renner-Lewis III
Fifteen-year-old Michael Renner-Lewis III, who had autism, died on the first day of school, August 25, 2003. The 6-foot, 165-pound teen died during or after he was restrained on his stomach
http://www.inclusiondaily.com/news/crime/parchment.htm
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Fairfield Center faulted in death: Ohio halts new mentally ill patients
CINCI
State officials temporarily banned new admissions at a residential center for the mentally retarded Monday after an investigation into the beating death of an autistic man showed that Fairfield Center's staff failed to protect the victim. The report by the Ohio Department of Health comes almost three weeks after Joseph Beaudoin, a 50-year-old man with profound mental retardation, was beaten and strangled. Sheila McLaughlin, Cincinnati Enquirer

http://news.cincinnati.com/apps/pbcs.dll/article?AID=/20060314/NEWS01/603140341/-1/
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Final image of a despairing mother and her autistic son
They look like any mother and son arriving at a railway station at the start of an Easter day out. But just over an hour after this CCTV footage captured Alison Davies and her son Ryan, both probably leapt 100ft to their deaths from the Humber Bridge. Although Ms Davies suffered from depression, her decision to take her son away - so that her family "would not have to worry any more" - came at a time when new possibilities had opened up in her life. She had just started a new job, finally passed her driving test and was busying herself with home improvements at her house.Ian Herbert, The Independent (UK)

http://www.findarticles.com/p/articles/mi_qn4158/is_20060421/ai_n16151562
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Light sentencing of New Zealand mother who killed autistic daughter expected
'I did it. I strangled my daughter. She was a misfit. People were scared of her because she was different,' she said. 'I wish it could have been quicker. I'd wanted to kill her for a long time.'ClariNet, Christchurch Press Company, The Daily Telegraph
http://spidernet.nl/~martijn_dekker/internaut/news/9807/30.casey.spml
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He died mentally for two years before he died physically. Every ounce of dignity was taken away from him."--Janice Roach, whose 14-year-old son, Matthew Goodman, died in February 2002 while at Bancroft School, a New Jersey institution. Matthew's Law, a measure designed to limit the use of restraints and seclusion for people with developmental disabilities and traumatic brain injuries, is named for the teen who had autism.
http://www.inclusiondaily.com/news/institutions/nj/bancroft.htm
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Mother convicted in murder of autistic child'The pattern of abuse culminated when Malphus slammed this 5-year-old boy's head into the refrigerator and threw him into the swimming pool,' May said. 'This was as vile and cold-blooded an act as I have ever seen.
http://savannahnow.com/stories/070502/LOCeoeMotherConvicted.shtml
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Mother kills autistic daughter, then herself
http://news.enquirer.com/apps/pbcs.dll/article?AID=/20050930/NEWS01/509300416
A mother apparently frazzled over the care of her autistic adult daughter shot the disabled woman in the chest Thursday afternoon, set their home afire and then turned the gun on herself, police said. Neighbors and those who knew Jane Naylor said the 55-year-old mother had a difficult life trying to raise her daughter Sarah on her own.
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Mother of 10 on trial for murder in autistic stepson's starvation death
Cincinnati Enquirer
http://news.enquirer.com/apps/pbcs.dll/article?AID=/20050930/NEWS01/509300416

The prosecution is seeking a first-degree murder conviction, saying Audrey McDaniels intentionally starved 18-year-old Brahim Dukes because she was overwhelmed by having to care for the severely disabled teenager along with all of her other children.Scranton Times Tribune
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Mother who suffocated son spared prison
Wendolyn Markcrow, 67, suffocated her son Patrick after his violent and loud behaviour escalated and drove her to despair, Oxford Crown Court heard. Late on 29 March, after sleeping drugs had failed to suppress her son's noisy insomnia, Markcrow smothered him with a plastic bag at the family home in Long Creedon, Buckinghamshire.Scotsman
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Joel SmithMurder, suicide mystifies family: Laguna Niguel father kills his autistic son and himself, leaving relatives stunned.
http://myoc.com/community/lagunaniguel/news/lnmurder020801.shtml

Tuesday afternoon, on the stoop of the family's two-story home in a manicured neighborhood, relatives said they have no idea why Delfin Bartolome, 55, shot his son before killing himself.

Laguna Niguel NewsNational Restraint Death Database
http://web.archive.org/web/20040610180722/www.copaa.net/newstand/data.html
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Council Of Parent Attorneys And Advocates (COPAA)
New Jersey Man Charged With Killing Autistic Son
http://www.ualberta.ca//htbin/lwgate/ICAD/archives/ICAD.1999-11/Author/article-29.html

Authorities say James Cummings, Senior walked into the Aventi Nursing Home yesterday morning and stabbed his 46-year-old son James, Junior. Police say the son was autistic and had recently suffered a stroke.
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Parents charged in boy's death
http://www.thestate.com/mld/thestate/news/local/5010746.htm
Almost two years after a 6-year-old autistic boy, Gabriel Britt, was found dead in a rural Dorchester County pond, his parents have been charged in his slaying.
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"Not Dead Yet Pinned Down: Devereux Cleo Wallace cited for violations of restraint policy in the death of 15-year-old Orlena Parkerhttp://www.csindy.com/csindy/2003-07-24/cover.html

In 1993, 17-year-old Casey Collier, an autistic boy who was 6 feet 5 inches tall and weighed 220 pounds, died of asphyxiation after being held in a physical restraint hold in a Cleo Wallace facility.
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Police probe death of autistic man
http://northeasttimes.com/2002/0320/starvation.html
Police said that the victim, Brahim Dukes, of Ruan Street near Penn Street, died of dehydration and malnutrition on Dec. 29. Police are awaiting the results of toxicology tests on Dukes, who had autism.
Times Online
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Author's note: The following report is long, but nothing underscores the inhumanity that "normal" persons are willing to inflict on those among us who are "differently-abled" as the following recent murder.
ABUSE UNCOVERED IN DEATH AT BRI
Victimization of 19-year old Linda Cornelison called "inhumane beyond all reason"
This is the full text of an article describing a recent investigation into a death of a young woman at BRI - it appeared in AUTCOM's newsletter, The Communicator ( (1995), vol. 6, no. 1.) This report is excerpted from bulletins of the Coalition for the Legal Rights of People with Disabilities. The Disabled Person's Protection Commission (DPPC) and the Massachusetts Department of Mental Retardation (DMR) released the report of an extensive investigation into the death of a 19-year old woman who died in 1990 at the Judge Rotenberg Center (JRC, Formerly the Behavior Research Institute, or BRI).

The investigation, which included interviews of 72 witnesses, review of hundreds of documents, and reports by four experts, concluded that JRC/BRI direct care staff, nursing staff, and administration, as well as several specific staff members, took actions that were "egregious" and "inhumane beyond all reason" and constituted not only violations of legal standards but violations of "universal standards of human decency."

Abuse and violations of DMR regulations were also found in the woman's treatment by JRC/BRI prior to her death. The Judge Rotenberg Center has been the source of controversy for years because of its heavy use of "aversives," which involve physically punishing people with mental retardation or autism to influence their behavior.

The woman, who was mentally retarded and could not speak, began showing signs and symptoms of illness on December 15 and 16,1990: she refused her food (she had always had a hearty appetite), she was restless and fidgety and made unusual noises. By December 17, she was pale, disoriented, had "glassy eyes," and kept attempting unsuccessfully to vomit.

During this time, because staff mistook her attempts to communicate her pain and discomfort for "target behaviors," she was punished repeatedly -- forced to smell ammonia, spanked, pinched, and forced to eat "taste aversives" -- either a vinegar mix, or jalapeno peppers or hot sauce.
She received a total of 61 aversives on the day that she died.
On the morning of December 18, after a 1-1/2 hour bus ride, she got off the bus and wouldn't move. She sat in a puddle, and had to be carried into school. From 4:00 p.m. to 8:00 p.m., even though staff knew she was "not herself," her punishments escalated dramatically.

By 7:00 p.m. she had received 8 spankings, 27 finger pinches, 14 muscle squeezes and had been forced to inhale ammonia at least five times and given several taste aversives, even though she was "obviously ill."
In fact, she was receiving so many aversives that staff requested and were granted permission to increase her aversives from 40 per day to 95 per day.
She received a total of 61 aversives on the day that she died. The total number of aversives on December 17 and 18 was greater than the number she had received in the entire month of December up to that point.

She had always disliked the aversives, and was terrified of the ammonia, but protests or attempts to avoid them simply led to more punishment.
Nursing staff was not notified until the morning of December 18 about her condition. Even though the nursing staff knew she was ill, no one kept her out of school, stopped her punishment program, or made any effort to determine whether the behaviors leading to punishment were attempts to communicate her rising pain. The first nursing shift, although notified she was ill, did notpass that information along to the second shift. From 3:00 p.m. until 8:00 p.m. on December 18, no one with any health care training was monitoring her condition. At 8:00 p.m. on December 18, she was lying on the floor of the bathroom and unable to get up, pale with a bluish tinge to her skin.

Although a registered nurse was notified, she refused to call an ambulance until a medical technician arrived and confirmed the need for it half an hour later. By the time the 19-year old woman reached the hospital, her blood pressure was zero and she was in shock. She was not operated on until 12:45 a.m. She died on the operating table at 1:35 a.m. on December 19. The Medical Board of Registration and Department of Health are investigating the behavior of the hospital in delaying surgery for three hours...

The autopsy revealed that her stomach had been perforated, (and) that she had extensive ulcers. The cause of the perforation remains unknown....
Although JRC/BRI retained an independent pathologist and conducted their own internal investigation, they refused, despite repeated requests, to make this information available to DPPC or DMR. They refused to give investigators the incident note made about the events of 12/18/90 by a registered nurse, or the nursing notes for this period. Six months of nursing notes were reported missing by JRC/BRI for this period.

Because the woman's death was gastroenterological in nature and related to ulcers, DPPC and DMR investigators and their experts also investigated her treatment through a "specialized food plan." On the specialized food plan, she had to earn her daily meals by not engaging in certain behaviors and/or working on a computer.

Ironically, staff confirmed that although her meals depended on her getting right answers on a computer, she neither understood the relationship between getting fed and getting the right answer on the computer, nor how to get the right answer on the computer. "If she didn't earn her food, it was thrown out. She got real thin, she was skinny," said one staff member.

Staff also said that she was "always wanting to eat." The program allowed the 19-year old to be limited to as few as 300 calories a day, 20% of her minimum calorie intake for the day.

A dietary expert consulted by the investigator stated that it was impossible to maintain the woman's health on 300 calories a day, and that she needed at least 1737 calories a day to maintain her lowest acceptable weight, 108 pounds. Although JRC/BRI was under a court order to ensure that her weight did not slip below 90% of ideal body weight, the autopsy report showed that the woman, who had weighed 125 pounds when she was put on the food program less than a year before her death, weighed 90 pounds. In less than a year, she had lost 35 pounds, 28% of her body weight. In addition, although DMR regulations permit the use of intrusive and severe aversives such as spanking and ammonia for "seriously dangerous behaviors," the woman was punished when she displayed the following behaviors: "Drooling, spitting, nagging, stopping work, refusing, silly laughing.

She was deprived of food for merely having the wrong answer on the computer."

In related BRI news, in January 20, 1995, the Massachusetts Department of Mental Retardation issued its report and Decision on Certification to Use Level III Interventions to JRC/BRI. The Department's regulations related to behavior modification and four out of twelve conditions of certification. Based on their findings, the Department ordered JRC/BRI to terminate the use of Level III interventions (which include the use of all painful aversives such as shock, forced inhalation of ammonia, water squirts, taste aversives, denial of meals) on six residents. The Department granted conditional certification permitting JRC/BRI to continue using Level III aversives on the remaining residents. The Department found that despite a requirement that Level III -- the most intrusive and painful interventions -- be used only to control "extraordinarily dangerous behaviors that cause serious harm,"

JRC/BRI was restraining and shocking residents, denying them food and forcing them to smell ammonia inhalants for behaviors such as "nagging," "slouching," "silly laughing," "refusing to get up out of seat," "tearing paper," "staring at objects, "staring at thumb or fingers," or "holding one hand with another while looking at his thumb" ...Residents are also shocked for trying to remove the electric shock device attached to them, or for grabbing at staff when they are shocked.

One staff member stated that while VI's treatment plan called for her to be punished when she was aggressive, she was in fact only aggressive when she was punished.

In addition, despite requiring that these measures only be used when they are the least restrictive and most appropriate to a resident's needs, the Department found that JRC/BRI used these interventions even when far less intrusive and painful interventions were more effective...When aversives were lowered for the client who died on 12/19/90, her problem behaviors went down.... JRC/BRI repeatedly barred access to the Department for necessary reviews and investigations. (Excerpted from "Abuse Confirmed in Death at BRI," and "The Department of Mental Retardation Finds Serious Violations of Regulations at JRC/BRI," bulletins of the Coalition for the Legal Rights of People with Disabilities.)

Eric MacLeish, BRI lawyer, stated, "Linda's death was tragic, but it was not the result of negligence. We didn't do anything wrong. We loved her.
Despite the report of the probe into the death of Linda Cornelison, which was delivered to top DMR officials on January 3, and despite the findings of serious violations in the treatment of other clients, on January 20 DMR conditionally recertified JRC/BRI. BRI administrators were questioned by legislators at a public hearing on February 22 at the Massachusetts State House. BRI Director Matthew Israel, PhD, defended his program by citing the Autism Society of America (ASA) position statement declaring that each family has the right to "select options they feel are most appropriate for their autistic family member" and insisted that aversives constitute effective "therapy."

However, he was forced to admit that 5,300 electroshocks in one day did not work for one BRI client.
State Rep. James V. DiPaola, a former police sergeant and vice chairman of the Joint Committee on Human Affairs and Elderly Services, self-administered an electroshock from BRI's machine, which caused him to leap out of his seat. "It was torture," he stated. "It was very painful." Also speaking at the hearings was BRI's attorney Eric MacLeish, who branded Roberta Cornelison's malpractice lawsuit against BRI as "irresponsible." (reported in The Boston Herald, Feb. 15 and 23, 1995, and by AUTCOM members in attendance)
http://normemma.com/lcorneli.htm
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The following was copied from "Murder of Autistics" which can be found at:
http://www.thiswayoflife.org/murder.html

"
In Loving Memory...This page is dedicated to those autistics who were killed because they were autistic, including:

Casey Albury (Age 17, died 1997)
Angelica Auriemma (Age 20, died 5 Dec. 2003)
Dale Bartolome (Age 27, died 29 July 2002)
Charles-Antoine Blais (Age 6, died Nov. 1996)
Eric Bland (Age 38, 2004)
Jeffrey Bogrett (Age 9, died 1 Dec. 1995)
Gabriel Britt (Age 6, died 3 March 2001)
Casey Collier (Age 17, died 21 Dec. 1993)
Maggie Caraballo (Age 38, died 20 Aug. 2003)
Jonathan Carey (Age 13, died February 2007)
Terrance Cottrell, Jr. (Age 8, died 22 Aug. 2003)
James Joseph Cummings, Jr. (Age 46, died 16 Nov. 1999)
Jason Dawes (Age 10, died Aug. 2003)
Christopher DeGroot (Age 19, died 19 May 2006)
Brahim Dukes (Age 18, died 29 Dec. 2001)
Marcus Fiesel (Age 3, died August 2006)
Lillian Leilani Gill (Age 4, died March 2002)
Matthew Goodman (Age 14, died 6 Feb. 2002)
Jim Helm (died 1998)
Stephanie Jobin (Age 13, died 17 June 1998)
Daniel Leubner (Age 13, died 4 Sept. 1999)
Katherine McCarron (Age 3, died 13 may 2006)
Patrick Markcrow (Age 36, died 29 March 2005)
Justin Malphus (Age 5, died 19 April 2000)
Charles Mancill (Age 24, died 13 Feb. 2002)
Sean Miles (Age 37, died 2 May 2006)
Abubakar Nadama (Age 5, died 23 Aug. 2005)
Mark Owens-Young-Rogan (Age 11, died 17 Sept. 2001)
Pierre Pasquiou (Age 10, died 28 Dec. 1998)
Tiffany Pinckney (Age 23, died 2 April 2005)
Michael Renner-Lewis (Age 15, died 25 Aug. 2003)
Nozomu Shinozaki (Age 22, died 25 Feb. 2003)
Craig Sorger (Age 12, died 15 Feb. 2003)
Ulysses Stable (Age 12, died 22 Nov. 2006)
Tanaka (Age 14, died 24 July 2002)
Matthew Vick (Age 23, died 25 May 2002)
Wayne Winter (Age 39, died 15 Jan. 2001)
Willie Wright (Age 15, died 4 March 2000)

When these lives were taken from the world, some of the world's beauty and wonder was taken with them. We have lost that beauty and wonder forever. "

-"joel"

The author of "Water Is Jumping" would like to thank all the authors of published web pages such as those at neurodiversity.com , inclusiondaily.com, notdeadyet.org, healthwatcher.net, child-abuse-effects.com along with news services the world over.

You all have kept the watch for those killed or abused because they were different in harmless ways. Ways that most of the world continues to refuse to understand or tollerate. Especially "Joel", who is autistic, for his very moving web pages regarding autism. Joel's pages can be found at: http://www.thiswayoflife.org/

It is this author's hope that one more page..just a drop really...will add to all the others. Enough drops can form a flood and a flood can change everything.

"...with longsuffering, forbearing one another in love;" For Timothy and all the others like him, no matter what, it just has to be that way.

For all of us.

***

"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away. "
-Henry David Thoreau

Christmas

2007-12-24T23:15:00.000-05:00

Christmas Eve '07

Tonight, Tim's brother, being the typical 7 year old kept finding one excuse after another to get up. A glass of water, another glass of water, and....another glass of water, the fan was too loud, the TV downstairs was too loud, he heard a noise on the roof, the cat was purring too much, could Daddy check NORAD and find out where Santa was, could he have a snack, another glass of water, and inevitably after all that water...a trip to the potty. Finally, when reminded that Santa only visits houses where every one's asleep, he stayed still and quiet for the five minutes it took for him to conk out, laying sideways across his bed with his thread-bare Clifford The Big Red Dog under his arm.

***

Tim, on the other hand, operates on a schedule with a precision that could be used to calibrate an atomic clock. By 8:30:00 pm he was quietly in bed with the covers pulled up and the lights off. I went to tuck him in.

"Timothy, do you know what tonight is?"

Silence. Timothy is lying on his back, clutching the blankets under his chin, staring into the dark ceiling.

I ask again, "Timothy, do you know what tonight is?"

Silence...then Tim, still staring at the ceiling answers flatly out of the darkness, "open presents."

"Well, not quite...that's tomorrow. Tonight has a special name. Do you remember?"

"tuesday"

"No, not Tuesday. Tonight only happens once a year and is very special. Tuesday happens once a week and is not special. What do ya think? Tonight is......?"

"new. year."

"Good try, but not quite. New Year's is in about another week. Tonight is..."

"january"

"Nope. It's CHRrrrrrrissssssssmaaaaa.."

"christmas"

"Right! That's right, Timothy! Tonight is Christmas Eve! It is very special! Along time ago a very important man was born. They say He could work miracles. Whadda think of that?"

Silence.

Tim rolls to his side, pulls his blanket partly over his head and whispers, "night night daddy." to the hallway behind me.

"Yeah. ok. Night, night. I love you Timothy. Merry Christmas." and I give him a kiss on his cheek.

He's still looking through me and into the hallway, his eyes fast going glassy. Silent. Still.

I watch his breathing deepen. Since he does not look like there's anything wrong...especially when he's asleep, it's easy to imagine what he would be like if he was a normal eight year old boy on Christmas Eve. That anticipation that is so strong the air vibrates around kids this time of year. It makes the old, young again. I imagine what might be in his room...a ball glove maybe, worn sneakers, Power Rangers stuff, books, bits of this and pieces of that. By this age, he would be strongly doubting the Santa story; but still wanting to believe..maybe enough to debate it among friends on the playground, just so long as those worldly 4th graders were not within earshot.

Tomorrow he will get what he loves: cars. That is pretty much all he ever wants. Cars and a baby doll he's been asking for. He does not discriminate between toys for girls and toys for boys. He wants what most 8-yr old boys would recoil from: a baby doll that coos and smiles like a real infant. Once one of the aids asked him if he was OK when she noticed he was getting very agitated near young children and he said, "scared.", so we think this is may be a good sign.

I was the only middle-aged white guy with an infant black girl baby doll that coos and smiles tucked under his arm in the whole store. So what. It's cute. When I get it home, I show it to the aid and my wife's friends: they all love it. I can also tell they want to coo back at it....hell, I do! So I know I did right.

I look at Tim lying there. Enya does a good Bach's "Avi Maria" and her rich,multilayered rendition is floating up the darkened stairwell - reddened slightly by the glow off the Christmas tree lights. The scent of a vanilla candle and baking in the house. The warm feeling of Christmas starting to fill in the darker corners.

The ancient traditions of Christians, and the traditions of the Romans before them, mark this night as a Holy of Holies. Now that all the stores are closed and all but the last of the holiday travellers in, I can feel the expectant weight of those eons of Christians and the Roman Empire, settling into the house as it drifts in the cold black velvet of a clear and ageless winter night....waiting, watching.

In his dark room, I bend over him one last time and repeat in a whisper, "Yes, He could, Timothy. Yes. He could. They say He could work miracles. Sweetheart."

I don't pray, just not the type anymore, but I do wonder if Any One's bothering to listen, will they take the hint? At least a touch of that kid's night-before-Christmas-anticipation and wonder. I brush another kiss across his cheek, turn and go down stairs.

Tomorrow will be Christmas and he's really going to like that doll!

******
Post Script

He loved it!

He opened his cars with a fast, happy efficiency and put them aside; but when he opened his doll he yelped in joy and clapped his hands, laughing.

Merry Christmas!

Swimming Lessons

2007-12-01T21:07:00.000-05:00

I always liked the way the Y segmented the various levels of aquatic proficiency. You start out as a Polliwog, graduate to Guppy, leap-frog your way across an ocean’s worth of non-Tretapod Chordates and, at least in my day, arrived at the decidedly predatory and much hipper types like "Barracuda" or "Shark"…although I think nowadays its something much friendlier.

The local Y offers swimming lessons and both my kids are signed up.

Matthew, of course, is well on his way to becoming a Navy Seal; but Tim is still a Polliwog and probably will be for some time...perhaps his entire life...because Tim likes putting his face in the water about as much as Melvin, the house cat.

The Y is very understanding and lets me get in the water with Tim. Aside from the instructors, I’m the only adult out there and my function is to keep Tim on task and in the pool.

He does not like the deep end at all and gets real nervous when the instructor has him swim in any direction heading toward that menacing line where the bottom drops away and the water gets decidedly darker.

Today, the instructor announced that the class would "choo choo" (two hands on the rim of the pool, shuffling along) to the deep end. This is the point in class when Tim announces with noticeable panic, "The Deep end is closed! Deep end is cloooosssed!". Well, it wasn't; but as far as Tim is concerned it is…and will be forever.

As the Polliwog choo-choo train pulled out of the station and headed toward the deep end, Tim and I stayed way back in the sunny 3-foot section where he and I worked on getting him to float on his back. It took some getting used to because Tim is a Feet-Firmly-On-The Ground type of guy who expected The Deep to materialize in the shallow end of a Central Ohio YMCA and swallow him up at any minute, but I think that he eventually liked the sensation of floating. Sort of.

Once he stopped flailing around and relaxed a bit, I thought about the Wednesday, Nov 28th edition of the "Metro & State" section of the Columbus Dispatch, which trumpeted:

Reprieve for Autism Aid

"The administration of Gov. Ted Strickland announced yesterday that it will temporarily halt a plan to alter Medicaid billing rules that effectively would have cut off services to thousands of autistic children."

The ax was scheduled to fall January 1st, but now is pushed back till 4/11.

We all breathed easier when my wife read that off to me over the phone. It seemed that the offerings of distraught parents’ tears and earnest pleas of caregivers to the State might have been heard. The State is still not sure what to do about their autistic charges, but at least our collective agony bought some time.

I watched the instructor and the other Minnows, Guppies and Polliwogs choo chooing two-handed along the wall toward the far end of the pool and to what must be to Tim, "The Abyss".

I know what you’re feeling, little guy, back here safely in the sunny, safe and warm shallow end.

All those who's dreams die with the loss of funding know how you felt getting a reprieve today from what surely must seem like a drowning pool to you. With the temporary stay in funding, we all got a reprieve. Without continued funding, our hopes for a better future for you would have fallen away just like the deep end of this pool.

Yes Tim, today you're safe. The Deep End Is Closed for all of us until April 11th.

Tim's Civics Field Trip

2007-11-19T22:48:00.000-05:00

The Anesthesia of Civility

On Monday 11/19 (my birthday. yippee kei aye) persons objecting to the proposed slash and burn "changes" in funding for their autistic kids were given an opportunity to speak before a rules committee.

This august panel started the meeting by addressing that they would discuss rule number "2234-5280069574836478961-4" (or something like that).

Ya gotta love civics! I'm all for decorum and civil passage of rules ...and this was in a format entirely right and all together proper for correct rule making.

But it is strangely disheartening to hear something that has the ability to trash your kid's life, as well as your own, read off like an account number on an electric bill.

As they read off the rules of decorum and order and what they were to discuss and not discuss and how it was to be discussed and who was to discuss it and when they were going to discuss it; I thought about the time I got a wisdom tooth pulled under a local.. 'couldn't feel a thing, but there were the oh-so very business-like pliers all cold gleaming surgical steel, a crrrrrrrunch as the tooth cracked, followed by some pulling and then "pop"! I thought, " ' didn't really need that part anyway".

The clean, orderly, surgical way of it all....whether it's minor surgery or a debate team discussion, serves to make things less stressful, makes the undiscussable - discussable. The formality and nice, clean orderly way has a way of stripping out emotion, a way of quietly saying; "We're all rational here. Now, now and hear, hear! No room for emotion and tears. Oh, and could you please hand me that bone saw?" Yes, Robert's Rules of Order makes things sort of ....painless. The Anesthesia of Civility: we'd still be running around clubbing squirrels without it. How many wars were launched and lives crushed while under it?

Except today, in this room, this surgery was going to very different. This was a part I did need. This was my son, this was my heart, it was already hurting like hell. The anesthesia of Civility wasn't working too well for me.

I was third to speak and read my notes to a packed room while Timothy leaped about, arms waving, roaring with laughter and shouting the question to people, "WHAT KINDA CAR YOU DRIVE???" . The poor aid I dragged along spent her time chasing him across the room and all over the eighth floor of the office tower as he careened around obstacles (e.g. "people") like a turbocharged F-1 in the Grand Prix.

It was an emotional meeting with many of the parents chosen to speak barely able to contain their tears, so I was in good company. I made it about 1/2 way through my little speech before I started to crack and had to wait a second here and there while pinching the bridge of my nose hard to keep my eyes from watering up. I thought, "Christ! Keep it together man!" Then I thought, "So the f'k what! This Hurts. They need to see ...no, SEE. SEE what their god damned rule is doing to people." I got it together, sort of, and finished up.

Afterwards I thought, "Well its a public forum of a rules committee, so the minutes are recorded for all time."

But those minutes, which will eventually become brittle and forgotten in some back room archive, will never be able to capture the collective flood of disappointment, of sorrow,

the feeling of helplessness that comes from hearing some rules committee from some Public Department read off your crazy, whacked-out, kid's life like its a bill that needed paid-up sometime ago.

The things we do for our kids.

*****

"Notes for a Public Hearing on Funding for Autism"

November 19, Rhodes Tower 2:00pm Rm 815

Our son Tim is autistic and has received ABA treatment on the “I/O Waiver” in the State of Ohio for the past four years.

When he started the program at age 4, he lived a life that existed only in his head. Toward others he was alternately unaware of their presence or highly aggressive, especially toward infants, which he would attack immediately whenever he saw one.

He could not read or write, could not carry out the barest of instructions, and was far from toilet trained.

He did not address or seem to miss us (his parents) He never asked, “Where’s Mommy or Daddy” when one of us was gone on a trip …sometimes for days at a time. He did not acknowledge our return at all…even his mother’s after a four-day absence, barely glancing up.

He did not play with toys, preferring to jump continuously throughout the household and tear up books.

Attempts to redirect or control him resulted in a rage in which he would attempt to bite or pinch.

He was unreachable, uncontrollable, destructive and even at that age, a threat to society because of his proclivity to attack other children and infants.

Today, while he is far from being “normal” for a boy his age, Tim can read, write, do simple math, has been toilet trained for three years and can usually communicate most of life’s physical needs.

His attacks on the family pets, his younger bother and small children have diminished to very infrequently…. and most importantly, he knows that such attacks are terribly wrong.

He recognizes when his brother or we are not around, inquires about us when we are missing and greets us upon our return. Like any child, he lives with great joyous anticipation for events such as Halloween, Christmas and his birthday and he believes in Santa Claus. The other day he was playing and laughing with a toy… something so typical for most children; but something he never used to do.

Demographically we fall close to what is typical for a family of four in central Ohio and we have a near normal life, as is possible. Not extravagant by any means, but there are presents at Christmas and birthdays, children’s magazine subscriptions and a little extra for camping trips and visits to the zoo and King’s Island on occasion.

That is because of the foresight of a few within Ohio who recognized the need to fund the highly specialized one-on-one training called “ABA” which has been proven to work with autistic children such as Tim.

Because of their vision, Ohio has become known within the autism community and held out as a beacon for what can be possible and what can be achieved.

Without this amazing program, our beautiful son would now be in an institution for his safety, the welfare of our other child and society.

Here are the effects of loosing funding on one Ohio Family:

As his parents we have no doubt that his forward progress socially and intellectually will slow terribly if not cease and possibly regress without continue daily, personalized and intensive intervention.

Tim currently receives instruction and one-on-one supervision from a team of three aids, a program director, a psychologist, a psychiatrist and a speech therapist. In addition he is on three different types of medication to help to keep him oriented to the here and now and reduce the number of unprovoked attacks he will launch on small animals, children and infants.

This highly individualized, intensive and daily intervention is necessary because Tim must have direct one-to-one interaction almost continuously. Without it he quickly retreats into himself again and looses contact with the world.

The total cost for Tim’s care is conservatively estimated to be between $40,000 and $50,000 per year, which is roughly equivalent to the net income of a wage earner making between $51,000 to $64,000/year

Since insurance does not recognize autism as a covered illness, a loss of funds would require us to draw down our retirement account, max-out available credit and eventually sell all assets, including the house, and use what profits we could net.

All monies would be consumed within 6 to 7 years and we would be left with no retirement, debt ridden and a house in one of Columbus’s more dangerous, run down areas.

None of those estimates include extraneous expenses that always arise with children and it would ensure that there would be few presents for birthdays and holidays, no fun trips for the children. It would not cover major expenses like auto or household repair or illness not covered by insurance.

This is with both parents working and the loss of the either wage earner’s job would be instantly catastrophic.

In short, it would be the barest of existences for the entire household for years, threaten to sacrifice much of our younger, normal son’s potential, and in return would only buy at the very best, an additional 6 to 7 years of care for a child who is now eight years old.

That is not a life that anyone of you sitting on today’s panel would tolerate for your own.

There are hundreds of families with very similar stories in Ohio, which translates into near thousands of souls whose lives your proposed changes would emotionally and financially decimate almost immediately.

This does not include the hundreds of caregivers that the state has invested training into, which would most likely be unemployed.

In the end, for reducing funding for those that Ohio’s constitution has promised to always protect the only effect will be wasted life and increases in poverty and hardship for Ohio’s most vulnerable residents and those that care for them.

It will also increase future costs by almost guaranteeing that Ohio will pick up the tab for Tim and hundreds like him later, when unable to function as a member of society and support himself, he will become either a danger to society, a victim of crimes against his person, committed to a state institution for his own good or wandering the streets unable to communicate enough to even beg…. just one more of the many pathetic homeless now gracing our streets.

In reducing this funding, in anticipation of a Federal request not even made, Ohio’s legislators have forgotten their promises to stand by and for those that voted for them and the better interests of their State and they have caved without the least bit of a fight to Federal policies that are not in the interest of their state or those residents they are sworn to protect.

Please.

Ohio has a program that shows the rest of the US what is possible. Ohio has shown that a State can be both fiscally prudent and innovative in its approach to a terrible affliction that destroys so much of life’s hope and potential.

The funding and programs must continue without interruption and, in fact, they must be better funded and protected for anticipated increases in Ohio’s autistic population over the coming years.

Thank you

The Measure of a State is Seen by Its Charity

2007-11-18T11:21:00.000-05:00

Living at the Will of the State

Imagine walking through a carpeted room with rotting floor boards...you can't tell when or where the ground will simply fall away from under your feet. This is what it is like to live at the mercy and whim of a government, like many of our country's weakest residents and those who care for and about them must do.

With a current political climate that just seems down right mean in allot of ways, funding for the weak and helpless is often the first to go when the Econ 101 question of "guns or butter" starts leaning more to the left. And why not? Often living at the fringes of society, mentally impaired, poverty ridden they are a disorganized minority with no voice and no money...and besides, the mentally missing are not exactly going to grow into high tax bracket voters now, right? For those in government looking for cash, quietly "restructuring" (e.g. raping) social programs is as easy as shot gunning quail trapped under a net.

On Saturday November 11, 2007 the following made the front page of The Columbus Dispatch:

"State May Cut Funding for Kids"

It was an article about how the State will cut medicaid funding for children with autism. The State says that it is in the best interest to restructure the current funding before the Federal Government does. (I never doubted for a second that our current Federal "Terrorist in Every Pot" regime would not go after the weak. In fact I'm a bit surprised it took them this long to get to our kid; but I'm amazed at how quickly our state caved to them. I thought elected officials were supposed to stand for those who elected them first. Guess not.)

The effect will be IMMEDIATELY devastating for families and children with autism... and as the following letter indicates, will have long range consequences too.

What's the difference between cutting programs that help the weak in a tight economy and throwing the lame over the side of a stranded and distressed ship?

When a corporation is nearing the rocks, it lays off its employees. It has to, that's just business and it must be done. It's the hard-nosed realities of life in a thriving open economy. In fact, if the business did not do that, it may die and many more people would be affected...all the way from suppliers, the communities that benefit from its taxes, those that rely on the business for products and; of course, the employees.

But when the same good, sound corporate principle is used too aggressively by a government created "by, for and of The People", government turns away from being a protector of those who create and nurture it toward a protector and hoarder of its own self-interests. The Government then is no longer living for the people who create and sustain it, The People are living for it.

Governments are not companies and they have more options than companies when faced with hard financial times. We've all heard of counties going bankrupt..but did they then get broken up and sold off to the highest bidder like a corporation? ("Franklin County, going once, going twice, SOLD to the State of Michigan for $5.95"!)

What do you think will happen to you, Dear Reader who lives in such a "State, Inc." preoccupied with its own financial success and gaining a better "market share" of tax paying residents and companies? A State or government like that has little purpose for investments that will not generate much return and the weak of mind or body are just not promising "investments", now are they? What will happen to you if suddenly unemployed, uninsured and ill you petition such a state for assistance?

What have we let ourselves become when we let the very government that we created, our government ...the most wealthiest and powerful of nations...turn coldly on the weaker amongst us?

What have we become?

***

Dear Governor Strickland and State Representatives:

As a parent of an autistic child (age 8) I read with horror in the Columbus Dispatch November 17th, 2007 edition that the State I reside in and pay taxes to is turning its back on its most vulnerable constituents, along with the people who love and care for them.

By restructuring funding for children with autism without fully guaranteeing that their care and education will continue without interruption or modification of any type, future years will judge your administration as responsible for:

 An increase in homelessness over the next decades

 An increase in crime over the next decades

 An increase in victimization of this most vulnerable segment of your State.

 A reduction of jobs within the State.

 A reduction of reasons for taxpaying voters to continue to support your administration

 A reduction of reasons to continue to reside and work within a State already hemorrhaging from both job loss and flight of residents with higher education.

 A loss of votes from your constituents who are appalled by the State's cavalier attitude toward the needs of these children and apparent rubber-stamping of Washington's agenda.

 An increase in institutionalization.

How will your administration's new proposals aid, if only in spirit, the following articles from Ohio's Constitution that you and your administration are sworn to protect?

FROM ARTICLE I: "INALIENABLE RIGHTS" "…seeking and obtaining happiness and safety":

The proposed changes will only serve to INSTANTLY create a devastating increase in poverty, increase in emotional strife, reduction of living standards, reduction of self-funded retirement accounts to below poverty within those families that make every attempt to love and support their disabled children.

FROM ARTICLE I: RIGHTS OF CONSCIENCE; EDUCATION; THE NECESSITY OF RELIGION AND KNOWLEDGE "…to encourage schools and means of instruction.":

The present funding does an excellent job of providing for the highly specialized type of education that autistic children need. There are very few alternatives, if any and public school is not one of them.

ARTICLE VII: PUBLIC INSTITUTIONS
Insane, Blind, and Deaf and Dumb
"Institutions for the benefit of the insane, blind, and deaf and dumb, shall always be fostered and supported by the State."

In the larger scheme of things, (ignoring the outmoded, pejorative terminology) the above Article says that the State will always stand by and protect its most vulnerable residents. Instead, it seem like your administration is rushing to align itself with a Federal Government well known for reducing or curtailing funding for the weak to fund an ineffective and unpopular war on two fronts.

The numerous programs available through the current funding system meet the State's promise to its weaker residents and must continue.

The current programs for the treatment of autism work and Ohio is often referred to as a progressive State in the treatment of autism because of them. They must continue without interruption of any kind.

I am certain that while your administration's proposed legislation was made with the best interests in mind for Ohio, upon closer inspection it is a disaster.

For a glimpse into what life is like as a parent of an autistic child, please refer to: http://water-is-jumping.blogspot.com/

Best Regards-- Lori and Jim

http://winslo.state.oh.us/govinfo/stgvtop.html

"See what a little prayer can do?"

2007-11-16T23:24:00.000-05:00

(or "The Library Incident")

It's always the blue-haired ladies. Always. We can not figure out why.

Now before I insult a large (and growing) section of the population...which I'm surely going to do in the next few paragraphs, I'll state that I know that I am painting with a broad brush here...and of course, dear reader, I'm not talking about you specifically, no matter what color your hair is, right? (And if I am...well, you know who you are...no matter what color your hair is.)

It's true though, nothing brings the blue-hairs out of the woodwork like a 5'4" 110 lb good-looking boy, screaming...no, let me re-phrase that:

Slathering-at-the-mouth, red faced, babbling incoherently, nose running SCREAMING at the top of his lungs-type screaming; all the while kicking, hitting, pinching, pushing his aid or his mom...in public. It's like a beacon for this particular demographic of omniscient wonders of parental guidance and child care. Of course, they never can just keep their mouth shut. Oh No, no, no! Why do that and waist all that free advice it's their mission to impart?

Why does Tim go off like this? ' Don't really know, but as his parents we have our thoughts...

Tim speaks but has a very hard time getting his thoughts out. Its been said that autistics see the world in large blocks of images, like a bunch of snap-shot photographs. (Photos that are not always in chronological order to boot.) The following is my opinion only; but I take that to mean that they see the whole photo at once...not just focusing on the central area of importance like most would; but a global, diffuse focus. It all "hangs together" when its one image, but try to break it down and the individual parts loose their relationship to the whole, so it becomes near impossible to determine where to start in describing what they see in their mind. Either that or they become fascinated with one trivial aspect of the scene, loose themselves in it and again, do not know where to start.

These are my thoughts on what it must be like to be autistic trying to describe a scene...

Take a look out your window sometime and describe everything you see at once...not, "I see a bird flying through the sky and the grass is green..." To do that you have to focus on various aspects of the picture: the bird, the sky, the grass. You instantly deconstruct the whole scene, filter out the important from the trivial and then translate word-less image into image-less words so that you can put it into a linear, list-like format.

Now, don't do that.

Describe the whole, entire picture the way you see it: all at once...but where do you start if it all looks of equal importance? Maybe there are parts of the picture that are very interesting to you...so interesting that you can't think about anything else and your mind becomes filled with that one little aspect of the picture...maybe its the way the water in the bird bath reflects light. Add to that a sense of urgency because its important to you to describe the picture or you will not get something you need at the moment.

Go ahead, do it. Right Now. Can you? Are you getting a feeling of what a social life might be like for Tim?

It must be terribly frustrating to see clearly what you want in your mind but not be able to get the words out. Add to that a scrambled wiring pattern in your head, enough antipsychotic, antidepression, and antimania medication to knock over a small pony and sometimes that frustration gets to be too much so you start screaming. No one understands you and that's frustrating as all hell, so you start swinging at them to make them understand. Pretty soon you're just raging on, yet STILL no one understands you and so, like Tim, you're over the top, bug-eyed ranting and honestly can NOT get it under control.

This happens at Walmart, book stores, libraries, car dealerships, parks and when it does my poor wife and all of Tim's aids have had to endure glaring death rays of matronly disapproval from anonymous grandmas. One aid, while waiting Tim out at a local park as he alternately flailed at her and threw himself on the ground, had to put up with two old bitties tsk, tsking among themselves while saying loud enough to be heard as they walked by, "He's too old to act like that!". The aid just endured it. I would not have.

For some reason, I have not had to put up with much of it, Allah be praised. It may be "The Dad Effect" or it may be that I just tend to get reeeeeal nervous when I take him to certain locations (like a store with toys) and consequently, with heightened awareness of his mood, will give him the bum's rush out the door and into the car at the very firstest, slightest sign of detonation; but the aids and my wife do not always have such luxury.

My wife, like me, is signed up for the full tour; but I have to hand it to the aids, they can quit and leave; yet they keep coming back for more...even when the stress of Tim's set-backs, rage attacks and the know-it-all callousness of the public breaks them to the point of tears at times. Lord knows, it's not the money. We love our aids. Yes, we do.

In the lore of Tim's rage attacks...and that's what they are..Rage Attacks...what has become known as "The Library Incident" just takes the cake though.

***

Tim loves the library...any library. This is good. Tim can read and this is very good! Plus, its a big kick for him to scan the books out with the laser bar-code reader. So, we love to take Tim to the library, which is just what one of Tim's aids did a couple of weeks ago. She chose the Whestone library because its close.

Tim was having difficulty getting his point across that he wanted a book of some sort. On top of it, he was getting an ear infection, unbeknownst to anyone at that time...so he was not in the best of moods. They got to the check out and Tim just Lost It.

Totally.

Do-Not-Pass-Go-Lost-It.

As in, Everyone Outta the Pool, Full Tilt, Game Over, LOST IT!

He went after his aid...kicking, biting, screaming, pinching, scratching and the aid grabbed his arms to keep herself from getting flayed and prevent Tim from either intentionally body-slamming something hard or attacking the next nearest person (Tim is not too picky about who he goes after when he blows like this...in the words of Shakespeare, "All are punish-ed", helpful strangers included.) She was not wrestling with him, she just grabbed his upper arms and held them down against his sides as best she could, while he tried to kick and bite her.

Enter the blue haired lady.

She started screaming at the aid to "Let him go! Let him go! You're hurting him! Let Him Go!"

(Quality intervention like that always helps.)

Now Tim is screaming and the blue-hair is screaming and no one can hear the aid trying to calmly explain the situation while keeping Tim from either ripping her or our geriatric Joan of Arc to shreds, but there was no calming our heroine from her self-ordained mission, she just kept right on ordering the aid to "Let him go!" Of course, in the quiet of a library, this was a hell of allot more interesting than anything on the shelves, so they had an audience. At least, a well-read audience this time. To their credit, the library staff...whose seen Tim before, kept their cool.

Finally, Tim blew himself out enough for the aid to get right into his face without getting head butted and in her best Drill Sergent more or less shouted the order to "STOP NOW!". Tim will almost always stop after his fit runs for awhile if you loudly order him to "STOP NOW!" The aid had timed it right. Tim Stopped Now. Just like that. Like a light switch, he just turned it off. (This "On/Off" is always a bit disquieting...but, hey, it works.)

Dudley-Do-Right-with-the-Blue-Hair looked at the aid and said in her most self-righteous tone, "See what a little prayer can do. I prayed for him."

Gee, thanks.

If there's one thing parents of disabled children know is how to pray, how to bargain, and eventually, how to grovel.

Then you learn how to endure..endure the deafening silence of a dispassionate universe, the stupid words of a rude and harsh public, ham-handed meddling bureaucrats, and time flying by. It eventually dawns that it's you who must endure that which a parent should never have to endure: a life sentence to outlive your own child.

So, for all the prayers we've said ...

and for all that have gone unheard and unanswered...

this smarmy freak-show of a self-appointed miracle worker had the nerve to say something arrogant and stupid like that.

Might I recommend another prayer that would be Dudley Do-rights and others of omniscient parental wisdom might employ?

Just say this..it works well: "Oh Lord, help me to keep my mouth shut, my opinions to myself and my feet fast to where I stand for I surely am an idiot and willst insert my foot into mine own mouth to the regret of all for I have failed, (as usual) to walk in anyone's shoes but my own. Amen."

The aids are trained, have known Tim for years now, they know what to do, do it real good-like and will tell you what to do and where to go, if they need help; but, they probably won't need help if you don't try to "help" them. So please, just get out of their way and let them do their job.

If you really want to be a hero, give generously to the American Society for Autism or say something encouraging and kind to the aids...that's free.

The Social Value of Tim Tricks

2007-11-15T00:50:00.000-05:00

Like I mentioned previously, Tim is a beautiful boy. He's a child that strangers will stop and comment on..."How handsome!", "What a beautiful boy!" to us and then to Tim; "How old are you?", "What grade are you in?".

When this happens, I stand there and imperceptibly tighten my grip on Tim's wrist or back of his shirt, tiredly cringing on the inside, waiting for what happens next...

Tim ignores them, rocking back and forth.

Sooner or later...usually within a second or two... they notice that Tim's wide-eyed expression of wonder is more distant and slack jawed than it should be...and its not fleeting either. They furtively glance at me with a puzzled, concerned expression; their smile draining away.

It's usually about this time that Tim snaps out of his reverie, suddenly lurches toward them, jabs a finger inches away from their face and shouts, "WHAT KINDA CAR YOU DRIVE?" (Remember the "imperceptibly tightened grip"...that's what prevents the hapless stranger from getting poked in the eye by Tim's finger.)

"He'smoderatelyautistic and lovescars... 'rememberseverycar he sees." I rattle this off for the billionth time with a quiet voice and a faint smile. I silently wonder for the billionth time what is my true motivation for saying ...or not saying...anything at all.

Once they get over having a 5'4" kid suddenly lunge right into their face, the strangers are always kind. Some will simply give its color; "A blue one.", they'll say. Others will give the make or model. Most times, what ever they tell him, Tim will answer back with the rest of the information. If they say, "A blue one". Tim will say "Toyota Corolla"...or what ever "the blue car" in the parking lot was. If they say "Toyota". Tim will answer back, "Corolla. A blue Corolla."
Like any kid, he absolutely loves it if he's right and he usually is with cars. He just shows it a little differently from most kids his age: he waves his fingers in front of his chin, alternately laughing hysterically, growling loudly and pulling against my grip like a very happy 110 pound pit bull.

The stranger is always amazed. It is, after all, pretty amazing. This is a "Tim Trick" and its his best. I'm proud of him for this one. I doubt he'll be getting into Harvard on just that; but hey, how many Harvard-boys can instantly memorize the color, make and model of every car in a parking lot, huh? Huh?

OK. I know, it's cool but really not too practical. I don't give a damn. I'm quietly proud of him when he pulls this Tim trick off the way any father would be proud of his son who just made a goal at peewee soccer.

I smile and say, "Come on Tim! Time to go!" and walk off with Tim. He's growling and lurching along on my right while shouting, "WHAT KINDA CAR YOU DRIVE? ITS A BLUE ONE!"...then doubling over with another fit of fingers-in front-of chin wagging and riotous laughing. This repeats again and again while we walk to the car. He's obviously happy about this.

I take stock in the knowledge that Tim's trick is not as totally useless as it may seem: the stranger has seen just how physically beautiful and mentally shattering autism can be.

Extreems Within Extreems Within Extreems

2007-11-14T21:00:00.000-05:00

One of autism's few physical traits is that autistic children tend to have large eyes. Their propensity for appearing to see things that are not there easily lends them an expression of wonder.

These characteristics very often make them physically beautiful children and this is one of autism's crueler traits. It tears at us to have such a beautiful child that will always be as physically attractive as he will be vulnerable to the more predatory among the human race, always be too trusting of strangers, too easily taken advantage of. Tim is an embodiment of extremes. It would be easier if there was a physical trait that people could spot from a good ten feet away and think silently, "autistic." ...and then maybe not get too close or try to be helpful or get judgmental when Tim has one of his temper tantrums in public (more on that later).

There I said it! The unthinkable and unspeakable. What parent in their right mind would wish that their kid was somehow marked so others would not be caught off-guard for their own safety, or keep their opinions on our parenting skills to themselves. We alternately chastise ourselves with guilt for wallowing in such a silly selfish though, while being proud that he IS handsome. That's one of the few good things going for him, damn it. It's our job to make certain that he learns to be proud of his appearance and learns enough to be safe when we're gone.

It is easy to see-saw back and forth between these two thoughts. The contrast between such shallow selfishness on one hand and the realization that the latter may be impossible forces us to either stand against a howling gale of odds or be instantly obliterated by self-pity, failing as parents.

This is nothing like what we face with our other son (who is intellectually gifted). There we see-saw between challenging thoughts like, "Should we have the school skip him one or two grades so he's not bored in class or let him stay with his age-group for the social skills."

Tim is a living embodiment of extremes: extreme mood swings, beautiful features and shattered mind with a near photographic memory for cars. As his parents we find ourselves temped by extreme thoughts of selfish self-pity and counter with selflessness. Living with Tim and his bother, we live the extremes of raising a gifted child and one who is mentally disabled. Extremes within extremes within extremes. Equilibrium is that of diametric opposition. I've given up trying to find the center, although I do see it fly by every now and then.

A Meeting with DR. M

2007-09-23T22:33:00.000-04:00

In the movies, when bad news arrives it's always quick, obvious and clean.

Including the time it took to raid the fridge during the commercial, it takes all of 15 minutes to get The News.

In real life getting The News is painfully, painnnnnfuuuuly sllloooow.

The wife called probably every psychologist and psychiatrist in town...and this is a pretty big town. They did not work with children. They had a 8-year waiting list. They did not take our insurance. The number was disconnected. They never called back.

We knew that whatever it was, whatever Dr. G's cryptic, "I have an idea..." meant, it meant time was of essence. Young children with intervention can often be helped.

Months started to slip away.

I thought this must be what it's like for ship wreck survivors...you try to get the attention of the help that's out there; but help keeps passing by without taking notice of you and all the while, the water's starting to run low.

One day, Dr. G. the speech pathologist, called to see how things were going and when she heard that they were not, she pointed us to Dr. M, psychologist, who just happened to specialize in children with autism. Dr. G. said insurance be damned, pay for it our of our own pockets if we had too...just go see Dr. M.

And so we did.

The thing you'd remember about Dr. M if you met her was that she was always well-dressed and had beautiful, big blue-green eyes that looked right at you.

It would also soon dawn on you that she was a remarkable woman.

She worked most of her life as a fashonista in New York's garment district and then apparently decided one day that she had enough of everything fleeting, such as fashion is.

Well into middle age by then she went back to school, got her doctorate's in psychology and went to work bending the arm of Ohio's legislators to provide better funding for autism.

We were in the presence of a person who changed their own life in large strokes to change the lives of many for the better.

We had finally found a person of the type that many of us only read about: Dr. M was a real life hero, by the most altruistic definition of the word.

She listened closely to us; but was more interested in Timothy, who of course found her comfortable office a treasure trove of things to throw around. She was totally unfazed by him. One could tell that she'd seen this before.

She stopped by the house and gave Timothy a test one day. She concluded that he was very bright.

She also concluded that he was PDD-NOS: "Pervasive Developmental Delay- Not Otherwise Specified."

We learned that this is on the autism spectrum...not as bad as full blown autism but not the more socially workable Asperger's Syndrome either.

At the time, Tim was three and 1/2. We were told that with an intensive therapy called "ABA" there was a chance...A Chance...a little chance....a twenty percent chance...that he would "loose his diagnosis" by the time he was ready for school. One in Five odds never looked so good.

Dr. M somehow managed to get us to the top of someones list somewhere and in a few months, Tim was to start "Parent Directed ABA" funded by the county we live in. This was a Godsend. We had been reading and had learned that ABA ...like all of the treatments for autism...are not covered by insurance. Parents who go it alone end up depleting their retirement, their mortgage, their savings, their hopes and their dreams in a few years to cover the cost.

We found the volunteers, the country trained and paid them. The first train-the-trainers session was over a weekend in October '03 at our house. We've had people walking in and out of the place ever since.

One day, during a routine parent meeting Dr. M was seized by a coughing fit. It would not go away. She excused herself, leaving the room with a tissue that she had been clutching. I could hear her coughing in the next room. It sounded violent.

We got the news a few weeks later...Dr. M was ill and would be on reduced hours.

Then Dr. M was on medical leave and getting worse.

Then Dr. M was gone.

We went to the memorial to "celebrate her life", as one of the speakers said. It was a brave thing to say in the face of such a huge loss. The immutable, irrevocable and permanent loss. Sunny words of celebration spoken on a humid Spring day. Spoken bravely into the face of an endless black void. All lost to the entropy, silence and vacuum of death.

Christ.

This was worse than watching any long awaited rescue ship burn in the harbor. Dr. M was our hero, truly she was and we loved her for what she did for our son...and now she was dead.

A Journey of a Thousand Tears...

2007-09-22T15:51:00.000-04:00

Timothy rarely does anything just once if it lends itself to repetitive behavior and so; while we, The Earnest Parents, laid out our case for the good doctor B. every cabinet door in the exam room got slammed repeatedly. Dr. B, pediatrician, listened as best he could and then recommended a speech pathologist.

We, the Earnest Parents, again laid out our case at Dr. G's, speech pathologist, while Timothy careened out of the room and down the hall several times, threw all the toys in the office everywhere, jumped off of Dr. G's sofa, hammered on the computer keyboard with Dr. G's coffee cup, and tried to bite me when I stopped him.

We were somewhat oblivious to this behavior as being unusual. Hyperactive? Oh yes; we'd allow that...aren't all boys a little hyper, but by now we were partly blind to it. This was normal.

To her credit, Dr. G did her best to pay attention to what we were saying while her office was being dismantled.

Just about the time he ripped the diamond pane inserts out of the office windows, Dr. G. stated that this seemed like more than a speech issue ...much more...and she was recommending him for a psychological evaluation. My wife asked, in that Earnest Parent tone, "Do you think there's something wrong?"

Dr. G looked directly at both of us, blinked once, and said: "Yes, I think there is."

Silence.

My heart skipped a beat...I'm sure my wife's skipped two beats. An uncomfortable cold numbness started to bloom in the center of my chest.

The diamond pane insert bounced off the edge of the desk and time re-started. We both blurted out, "What? What is it?!". Dr. G. stated that it was not for her to say as she stood and started to pick up the hurricane damage. When we pressed her, she said that she had, "some ide....No. It was not for her to make a diagnosis."

The meeting was over.

My wife instantly broke into tears while I thought, "I knew this was coming. I felt it." and my shoulders dropped, defeated.

"Yes, I think there is."...Our entire life changed course forever on those five words.

"I think there's something wrong with your son..."

2007-09-21T10:17:00.000-04:00

That's the way the call started...from some stranger at the church...who thought she'd be the Good Samaritan and call my wife out of the blue one day.

OK, this lady's heart was in the right place, but this is not the best way to start a phone call if you are a stranger....it totally freaked out my wife.

****

My cell phone rang that afternoon and there's a near hysterical wife who's crying and ranting "that some...strange woman called .....and...... said..... that Timothy's.....not right! She said...that ...he jumps allot.... on the trampoline and and...doesn't make...eye contact. But I told her that he's just fine...the pediatrician said so...he's just a little slow in talking and alotofkidsarelikethat!"

"Right?! I mean he knows his ABC's and can count to 100 right?"

Meetings with the church lady and apologies all around...but nothing much was said at that meeting of any real help.

But really...the church lady was right...there was something off, despite what the pediatrician said (and he's a very good one) and what we wanted to ignore.

Finally, one night while watching Tim launch himself off the sofa again...and again and again ...and again....it dawned on us that there were always enough reasons to think everything was OK.

Those reasons always had a "but" in them.

Yes, he knew his ABC's...in fact he could assemble an ABC puzzle upside down and backwards in a few seconds; BUT, he did not point at something he wanted like most kids that age.

Yes, he could count to 100 and knew his colors...BUT it was hell to get him to look at us and when he did his eyes would immediately slide off and resume gazing into another land.

Yes, we put together a list of about 300 words that he knew...BUT knowing "words" and actually using them are two very different things. He had yet to say all the things a typical 3-yr old would've said in the proper context. No "mommy" (while reaching for mommy), no "daddy" or "kitty" or "milk" or really anything except those words..only spoken when prompted...and some fast babbling that sounded allot like Chinese ...and sometimes French.

When he wasn't babbling in his FrancoChinese and careening from room-to-room, he was jumping. ALWAYS jumping in his crib, jumping on the sofa, jumping on the floor..to the point where the furniture was being destroyed and we had become deaf to the house shaking like it was in an artillery barrage.

We both sat there, blankly watching Tim launch himself off the arm of the sofa, landing 3 feet away with a thump that shook the house. It was late and there was only one lamp on in the living room which cast a harsh singular light. (The shade had been damaged...by Tim.) It threw a larger-than-life Tim-shadow that would flail and fly along the wall like a banshee chasing behind while once again Tim attempted to fly from the sofa.

Someone said, "I'm calling Dr. B in the morning. We will be a little more forceful about our parental observations."

And we've never gone back to that church.

Water is Jumping

2007-09-18T00:51:00.000-04:00

It was one of those days in summer '04 where the rain just came down in sheets.

We were driving around town and there were puddles everywhere. The car drove through a good one and a spray of water splashed up as high as the roof and hosed the sidewalk for a good 6 feet.

Tim, my son who was 4 at the time, was strapped into his car seat and suddenly said, "Water is jumping."

Not a big deal, except that is the first time I remember Timothy saying ANYTHING close to a complete sentence...a complete thought...on his own without prompting.

Because Tim is autistic.

The formal diagnosis is PDD-NOS. "Pervasive Developmental Delay Not Otherwise Specified"...but that was made when he was 3. Now, he's 8 and it's pretty obvious that he's more than just "developmentally delayed".

Now, it seems like he's barely hanging on to reality ...or at least reality as most of the world sees it.

That's why I started this post. Partly to put to paper what all this is like, partly to rant, and partly...hopefully...that someone elected, someone who can actually make a difference while the rest of us feel like we're going down with the ship, will read it and think for a bit and make a change here or there. (More on that later.)

I haven't checked, but I wonder how many others are writing about their autistic kid...or kids.

There must be thousands by now.