8-year-old Mari Klages—-whose was asked not to return to a Girl Scout Brownie troop for girls with special needs in Oconomowoc, Wisconsin, after attending one meeting—-is now again a Brownie again, thanks to her former troop leader, Dina Johnston, and the Girl Scouts organization. Writes Laurel Walker in today’s Journal Sentinel:

Anita Rodriguez, vice president for organizational strategy at the southeast Girl Scouts chapter, said, “The bottom line for us is we do not discriminate and the Girl Scouts did not kick her out” but worked to find a solution.

Unfortunately, she said, the special needs troop that was tailored to the sedentary needs of the other three girls, including one with brittle bone disease, has disbanded after three meetings because parents and leaders were “uncomfortable with the publicity and how they were portrayed.”

Maybe the arrangement wasn’t a good fit for Magi and the others. Clearly, better communication and understanding all the way around was in order.

Walker also notes that Girl Scouts in Cedarburg are making a DVD to “promote autism awareness for other children.” Perhaps it might helpful to bring up Mari Klages’ experience or at least to consider why she was excluded?

Autism’s terrible toll: Parents risk hitting “a breaking point” is the headline in today’s Denver Post for a story about 13year-old Jacob Grabe, who was shot by his father, Alex Grabe, early in September. The article notes, and lists “similar chilling stories of sudden parental breakdowns have played out in the U.S. in the past several years,” and mentions Katie McCarron, Ulysses Stable, Kyle Dutter—shot this month by his father—and too many others.

Too many others.

Kev writes about 12-year-old Kyle Dutter, who was shot and killed by his father, Ryan Dutter, who then shot and killed himself, on Tuesday. Ryan Dutter had created a website about his son; he had filed for bankruptcy last fall. Kyle was in the the sixth grade at Glacier Creek Middle School in Cross Plains, Wisconsin.

No words can say……

I don’t know of any family with an autistic child who hasn’t, at some time or other, had some kind of financial difficulty, whether in the form of paying for therapies and treatments, or scrambling to live on one income, if one spouse has to quit his or her job to take care of a child. Living in a time of economic crisis means that families may well have fewer resources but just as many hopes to provide for their children. In yesterday’s Seattle Post-Intelligencer, Paul Nyhan focuses on the Otts, whose 6-year-old son, Aaron, is autistic: The Otts’s income fell from $120,000 to $38,000 last year as the credit freeze and the collapsing housing market took a severe toll on the income of Robert Ott, a “veteran real estate broker.” The family is no longer able to pay for behavior therapy for Aaron, who’s been struggling much more in his first grade classroom.

In one of the stark realities of the credit squeeze, [the Otts] can’t even free up cash by selling their home and downsizing.

“We can’t sell this place to make a profit,” Robert Ott said.

Plus, they probably wouldn’t qualify for a new home loan.

Looking back, he wonders what they could have done differently. Maybe held onto more savings? Skipped unproven therapies?

But like many parents dealing with a special-needs diagnosis, they felt pressure to do as much as they could as quickly as possible.

“We just moved forward doing everything,” Robert Ott said.

Ott notes that there’ll find a way to manage and provide for Aaron “‘because there is no other choice.’” But surely there’s a better way, a way to provide for families and their children: Families in Wisconsin, in Washington (as Nyhan notes), in Virginia, and around the country are hopeful for the passage of legislation requiring insurance coverage for treatment for autistic children.

Not that that will be the end of their efforts—-then there’s the need to get therapists and start teaching…………

Yesterday’s Wisconsin State Journal reports on changes in how the budget for severely developmentally disabled adults in Dane County is allocated, and how these affect individuals and the services they receive:

…….as more clients enter the system, the dollars are being spread thinner, with $76.5 million spent in 2007, the last year for which complete spending is available. On average, each adult client was allotted $49,196 in 2007 for housing, care, job assistance and other needs. Adjusted for inflation, the amount is down nearly $7,000 from seven years earlier.

Less purchasing power means less staff care for each person and even, as parents such as Kathy Karklus, of Madison, fear, a greater risk of injury for the vulnerable population.

Karklus’ son Ryan, 28, suffers from severe seizures and must be sedated and confined to a wheelchair. With the county’s proposed 3 percent average cut for existing clients next year, Ryan could receive fewer dollars, which means Madison Area Rehabilitation Centers receives less money for keeping him as a client.

That cuts into the rehab center’s budget and over time has meant fewer staff members, frozen salaries and reduced hours of care for clients.

It’s noted that Dane County was an “innovator in creating a community-based approach” in the 1970s and 1980s, when developmentally disabled individuals were moved out of institutions. This approach emphasized people living in group homes rather than in institutions and working with a caregiver alone, rather than in teams. However, this very approach has proved to be more expensive and “the county has promoted ‘efficiencies’ to save money, resulting in more situations where four or five people may live together in a duplex.” As the Wisconsin State Journal notes, it is financial needs and an emphasis on tight budgets that are now driving the program, rather than “a philosophical approach, emphasizing individual choice and human dignity.”

I think I know which approach I would prefer for my son: How to make it a practical reality?

The Wisconsin camp, Trade Lake, from which Keith T. Kennedy went missing from in June, now faces closure after 49-year-old Shirley Meade died there after being given the wrong drug, Clozapine. Yesterday’s TwinCities.com describes Meade as “severely mentally challenged” and a ward of the state of Minnesota, as her parents are deceased. Peggy Hjelseth, the camp founder’s daughter, gave Meade the incorrect medication:

When Hjelseth was interviewed by investigators afterward, she said: “I screwed up.”

Hjelseth realized her mistake within 30 minutes of administering the drug, [Burnett County Sheriff Dean] Roland said. Hjelseth told investigators she did not seek medical assistance and chose to have Meade “sleep it off.”

Meade slept most of the day and fell at one point. The injuries from the fall were not reported to medical personnel, the sheriff said.

Meade’s condition continued to deteriorate throughout the day until she was found dead by staff about 12:30 a.m. Camp workers called the sheriff’s office right away, Roland said.

Hjelseth faces charges of first-degree reckless homicide.

22-year-old Anastasis Hulke, who is autistic and also has bipolar disorder, has been missing from her Appleton, Wisconsin, home since Thursday, WFRV.com reports.

She is described as a 5’0’’ tall and weighs about 125 pounds. She has brown eyes and black hair. She was last seen wearing a black sweatshirt, blue jeans, tennis shoes or flip flops. She was also reportedly carrying a gold purse with red hearts on it.

This past year, my son has started to turn around and look back at us if he starts to walk ahead. He’s never alone and I don’t know what he would do if he were, or if he would think of himself as lost.

Go here to see a photo of Hulke and hope very much she is home soon.

Charlie can read some words and he’s not one for books. He’s been through a number of special-ed reading programs and has tried several software programs, with the former being a bit more successful for Charlie. He does not sit long when I open a book to read to him.

Tuesday after a very good swim (a couple of laps, at my encouraging) and an early dinner, I took out The Giant Ball of String, which my friend had given to Charlie. He sat for a page and was off—-I waited a while, got up, sat back down beside him on his bed where he was smooshing his face into some fleece blankets, and opened the book up again. “One spring night, a heavy thunderstorm flooded the creek,” I read (it’s bad news for the ball of string, as you can imagine) and Charlie repeated the whole sentence. He hung around for a page and a half more, than made me laugh by falling off the bed and telling me (suppressing giggles) “I need help!”

It was just a a few pages read out loud from a picture book—-but still, there’s power in books.

Twin Cites.com reports that he was found Sunday night, after a weeklong search.

5-year-old Carlee Bennett of Pleasant Prairie, Wisconsin, apparently drowned in her bathtub on Saturday evening, according to the Fond du Lac Reporter. Carlee had severe autism and was found lying face-down in the bathtub. Her grandmother, a retired nurse, was babysitting her and her two brothers and immediately started administering CPR.

Emergency personnel took Carlee to Children’s Hospital of Wisconsin in Milwaukee where doctors were able to restart her heart, Bennett said. But Carlee, who had been without oxygen for as long as 30 minutes, had severe organ damage and likely severe brain damage.

“The way we’ll always remember her is as a loving, happy, giggling little girl,” Bennett said. “Everything to her was funny. She was always smiling, always happy.”

Carlee had a history of seizures but hadn’t had one in a few years, he said. She also had no bump on her head or other marks to suggest she had fallen or hit her head.

Carlee usually bathed in about three inches of water with a few toys, her father said. She had been left alone in the tub in the past for short periods without incident.

There was a similar case here in New Jersey a few years ago in which a little girl around Carlee’s age drowned in her bathtub. Some of my son’s therapists knew this little girl and no one knew what to say.