Image: Yonahcampground.com

Memorial Day is past, again. This one was a little different in that I’d just been laid off, so I figured chasing Alex around grandpa’s lake house wouldn’t be so bad if I knew I my days of “rest” weren’t going to end on Tuesday morning.

I was prepared to a) chase Alex, and b) rely on good-hearted relatives to chase Alex at grandpa’s lake house, where Alex often likes to run through the house turning on all the lights. This activity isn’t nearly as bad as running into the neighbor’s lake house, which he’s also done in a few past years. They’ve been most forgiving, the neighbors, but how much could this really contribute to their own day of “rest?”

In previous years, we’d hired a local, young, energetic, non-middle-aged teen to chase Alex. This guy, who did a great job, wasn’t in our budget this Memorial Day. Aunt Julie therefore suggested we all work in 15-minute shifts, a pretty good plan except that it meant one person would likely have their shift run long.

Alex stuck to the basement as long as something good was on PBS Kids; he almost darted onto the neighbor’s lawn until blocked by a heavily chained new gate; he spent a few moments on the dock with Ned, who was fishing; I tumbled him on the grassy hill a little (Jill and Julie think things will be more interesting for Alex when the weather warms and grandpa breaks out the sprinkler nozzle on the garden hose; Jill is also looking into buying a lawn water slide).

I was about halfway through the can of pale ale in the swinging porch chair when he broke away from Jill and came out calling “Daddy? Daddy?” He didn’t get too close to the barbecue, and as close as he got proved enough for me to teach him to spell “fire.”

To Uncle Rob, goes the Gold Medal for the Alex Dash to the Neighbor’s. He pulled a laughing Alex back home. I don’t think he was any more pleased with Alex’s dash — Alex’s dash yet again — than we were, and he seemed upset that Alex was still doing this and couldn’t something or someone prevent it? Another early-summer holiday come and gone with autism as one of the guests.

Alex runs out of our apartment. He did this once at about 3 in the morning and we only knew because the phone rang (”Who the HELL is calling us in the middle of the night?” we fumed) and it was a neighbor, saying that Alex had come into her apartment and turned on all the lights. She wasn’t mad. Her boyfriend was mad at her the next day for not locking her door. Jeff was thankful she didn’t shoot Alex (not that she has a gun, but you get the idea).

When we stumbled out of the bedroom to look for him, he had already come back to the apartment and was blinking at us with a surprised smile (he didn’t think we’d know about his little excursion, maybe).

I slept fitfully, for the rest of the night.

The closed door (photo by Kwerfeldein, flickr.com)

Jeff didn’t go back to sleep at all, but simply started his day at 3:40 a.m or so.

Next day, Jeff took  the day off from work and we stopped in a number of lock shops and made a number of phone calls, trying to figure out what to buy so we could sleep through the night again. We settled on a couple of door alarms and for a few harrowing months, set both up. Now, we just have one at the top of the door, which is triggered if the door opens.

Since then, Alex hasn’t run out in the middle of the night. I’m relieved - and I know that alarm will always, always wake me.

The other day, a neighbor stopped by to ask me something and while we were talking Alex kept trying to dart out the door. He ran down the hall a few times and almost enraged, I kept grabbing him and screaming. Turns out he wanted to shut the stairwell door in the hallway, so I made him say those words (I - want - to - shut - the - door) and the minute he did I felt something relax in me, the tension draining away as he put into words his intention.

It’s like that door is sometimes the only thing he sees in an empty landscape, an irresistible siren call to freedom, to waiting by the elevator for Daddy to come home from work, to doors that need shutting.

If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

………….

The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

9-year-old Nicholas Benavides died Monday morning in a fire at his house in Corpus Christi, Texas, today’s Caller Times reports. Nicholas was autistic and, according to his grandmother, Maria Benavides, was “’shy, but also friendly and always smiling.’”

On Monday, Nicholas’ siblings, ages 11 and 4, were at their maternal grandparents’ home and Nicholas’ mother was at work. Benavides said her son, the boy’s father, told her he was doing laundry in a room at the rear of the house.

Fire Chief Richard Hooks said it hasn’t been determined if the boy was alone in the house. Fire officials were interviewing the boy’s father late Monday.

When Corpus Christi firefighters arrived at 10:37 a.m., about five minutes after the initial call, the front part of the house was engulfed in flames and a neighbor was trying to get inside, Hooks said.

…………..

Firefighters found the unresponsive boy inside the home about 10:45 a.m. Firefighters began CPR on the boy who was taken to Driscoll Children’s Hospital, suffering from serious burns and smoke inhalation. He was pronounced dead at 11:17 a.m., Hooks said.

Nicholas was a fourth-grader who, the Caller Times notes, loved to ride his bike and play in the yard of his house.

Am off to visit the cemetery where my grandfather, Yeh Yeh, great-grandmother, Bak Bak, great aunt, another great grandmother, a very good friend of the family, and many other great relatives are, and then out to lunch in Chinatown with cousins, aunts, uncles and (hopefully, if she’s up to it), my grandmother, Ngin Ngin, who’s 104. It’s always good to be with family—today’s St. Petersburg Times describes the bond between 12-year-old twins, Anthony and Ryan Moran. Ryan is autistic and Anthony is his constant companion:

Most of the time it’s good having a twin, Anthony insists. You always have someone to talk to, even if the other person can’t really talk back.

Ryan understands everything. “Only sometimes he doesn’t care what you’re saying, so he walks away.” And he can speak “when he wants to,” Anthony said. “One time when we were in the bathtub he said the whole pledge to the flag.”

Ryan will catch a ball, but he won’t throw it back. He’ll rebound your basketball but won’t shoot it. In Little League Challenger baseball, he’ll run the bases — but only if Anthony runs with him. “He’s always thinking about other things, so he can’t concentrate,” Anthony said. “It must be weird to be in his world.”

“Weird” maybe, but these are two brothers who are very clearly connected, however much one speaks and one is not able to.

A sad sad story from New York—7-year-old Chelsea Maldonado fell from a fifth-story window of her parents’ Bronx apartment on Christmas Eve, the New York Daily News reports—-reminds me of what I’m grateful for. Chelsea was autistic, blind in one eye, and bound to a wheelchair. Thinking of her family, and many families—-the Morans in Florida and many many more—-hope you’re all warm and safe and together today.

Very sad and sobering news to hear in this holiday season: On March 17th, 5-year-old Lily Breen swallowed a balloon and was found unconscious by her parents in their home in Desborough, Northants. As reported in today’s Telegraph, the death of Lily, who was autistic, has been ruled an accident. Lily’s mother, Angela, a registered nurse, tried to resuscitate her daughter before rushing her to the hospital, where she died.

The inquest heard Lily was very tactile and liked to play with things, and had a high pain threshold, often touching hot radiators with her hand or tongue.

Mrs Breen said she had found Lily with the balloon earlier that day and had thought to dispose of it as it was a risk, but had not got round to doing it, and had not noticed it again that day.

In her statement, she said: “I didn’t see the balloon following this and thought nothing more about this. We have since thought about it, I really don’t know where she got it from.

“I am absolutely devastated by the loss of my little girl and I am trying to come to terms with it.”
She said her daughter was a “loving and active young girl” who was very energetic.

Will be thinking of Lily and her family in this season, and after.

In the midst of talk of diagnosis and disability rights, of treatments and of what’s an appropriate education for an autistic student, we took a hands-free cold walk last weekend to see the Christmas tree at Rockefeller Plaza, and passed a wall of snowflakes too.

• Age of Diagnosis and the Apparent Increase in Autism
  A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.
• Recovery Distracts
  How the notion of “recovery from autism” colors—not for the better— parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
• Dangerous Ideas About Autism
  From Icad: “Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder.”
• Overglut of Gluten-free?
  If everyone’s going gluten-free, is a “special diet” really a treatment for autism?
• Human Clinical Trials Underway for Fragile X Drug
  Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports.
• The Daily Commute (Your Child’s)
  How far does your child—or do you—travel to school?
• Letter to OSU President Gordon Gee
  A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’”
• Older, and Trying to Be Wiser, and Better at Hemming Pants
  I turn 40 and find myself wearing hand-me-ups from a not-yet-adolescent boy
• The Private-Public Dance: What’s Appropriate?
  What’s an “appropriate” education for an autistic child?
• Who’s On the Board?
  No one with autism when it comes to Autism Speaks.
• Arrested: The Charge? Bad Behavior
  Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports.

Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports. 13-year-old Dakota Jacobson was charged with a felony after he was found carrying a pocket knife in his coat:

[Dakota] didn’t threaten anyone, but bringing any kind of weapon to school is a felony in Minnesota. While most kids understand why you wouldn’t want to do that, Dakota did not.

“He’s 13 and he’s autistic,” explained his mother [Kathryn Jacobson].

Children with autism can have trouble understanding rules. His mom says he was just trying to be like his dad, Brian.

“Brian is on the volunteer fire department, carries a knife hooked up to his belt, so he kind of likes to emulate his dad,” said Jacobson.

Police and the Pennington County Court weighed Dakota’s Autism diagnosis, but still charged him with a felony that ended up on his record.

“I was very afraid. I was hoping it was a dream, that’s what I was hoping,” said Dakota.

It’s more like a potential nightmare, and simply not the right way to address the needs of teenagers with autism and other disabilities. The WCCO story also describes how 19-year-old Thomas Brinker, who has fetal alcohol syndrome, was cited for disorderly conduct after throwing paint on a teacher’s sweater, and arrested. After being put in the Hennepin County Jail, Brinker was placed in METO:

METO is the Minnesota Extended Treatment Options program. Its one place courts send people to live if their developmental disability turns dangerous. Thomas’ family doesn’t think throwing paint rises to that level.

“I had to sign a piece of paper in fact, [saying] that I knew there were sexual offenders on the premises,” said Brinker. “He got to METO because of a court system that failed him, a school that definitely failed him.”

Roberta Opheim is the state’s ombudsman for Mental Health and Developmental Disabilities. She told the I-TEAM Thomas shouldn’t have ended up there, but a lot of people like him do.

“When they don’t or can’t participate in their own trial, they are sometimes sent to mental health facilities,” she said.

Opheim recently reviewed the METO program and found problems with the frequent use of metal handcuffs and leg hobbles.

“It became so routine that people didn’t even identify it as a problem,” she said.

Thomas was restrained on one occasion.

Brinker is still at the METO and now about to be released, and will return to a group home. The felony on Dakota’s record will be removed from his record after six months, if he does not bring a weapon to school again. But arresting minors for bad behavior and placing them in facilities where their own safety might be compromised?

A 5-year-old Arizona boy was bound at his hands and feet with duct tape by his father, as reported in today’s AZFamily.com. Jasper Smalley has been diagnosed with “Obsessive Compulsive Disorder, Bi-polar Disorder and Asperger’s Syndrome.” Here’s what allegedly occurred:

[Jasper's mother, April Smalley] says one day her ex-husband found out Jasper was caught hitting other children at daycare. “He called me after he had taped him up and told me he had duct-taped our son. I asked him to remove the tape immediately, and he said he wouldn’t. He said he was being punished.”

It was a punishment that made its mark in Jasper who was bound at his wrists and ankles.

April explains, “There were red abrasions on his wrists. It looked almost like where the tape had cut into his arm.”

April called Tempe Police. The police report says Philip Smalley admitted to taping his son three times. It reads, “Philip then took more tape and taped Jasper’s feet back together and taped his hands back together and taping up to the shirt sleeve of Jasper to prevent him from wiggling out from the tape again.”

The report goes on to say, “Jasper was crying and crawled on the ground to his bedroom with his hands and feet taped together where he sat and cried.”

The next day a judge granted April an order of protection against Philip. Police investigators called the case “felony child abuse” and sent it to the county attorney’s office but prosecutors never accepted charges.

Prosecutors have told April Smalley that they would “never get a guilty verdict.”

But duct tape?

An audit of the South Carolina Department of Disabilities and Special Needs has reported numerous oversights including failures to follow up on up on safety violations and insufficient efforts to keep abusers off facility payrolls, yesterday’s Associated Press (via the Courier Post) reports.

The audit recommends Disabilities and Special Needs require fingerprinting and FBI national background checks for caregivers, not just a check through the South Carolina State Law Enforcement Division. The agency said it would consider the feasibility of fingerprint checks.

Meanwhile, the agency isn’t doing enough to check references. It “does not have an adequate system to ensure that direct caregivers who are dismissed for consumer safety-related disciplinary infractions are not rehired elsewhere in the system,” the audit said. The agency said it would revise its reference check system to require more detailed information about applicants.

Questions were also raised about how the personal funds of individuals have been handled, and about how $10.5 million earmarked in fiscal 2007 and 2008 to expand intensive therapy for children with autism has been used. The audit found that only $671,917 had been spent.

And one suspects that such abuses may be not uncommon in other states?