Summer Safety and Children with Autism

It’s never too soon to start thinking about summer, especially here in the Northeast, where it has rained every day for the past week! Care2.com recently did a post on thinking about the needs associated with a child with autism and their transition to summer, especially when it comes to the issue of summer safety. At SafetyNet, we’ve recorded a podcast that addresses several topics related to summer safety and children with autism. Take a listen.  What are some of the protective measures that you take to help keep loved ones safe from wandering, particularly during the summer?

Activity helps kids learn about autism

Sometimes Madison Roberson has to explain her younger brother’s behavior to her friends.

Justin Grider is in second grade and has Asperger’s syndrome, a form of autism, and though he is an outstanding student academically, his social skills often are lacking, which is typical of autism. Autistic kids don’t always understand when someone is kidding or that they should respect personal space.

“I know my brother doesn’t have a lot of friends because people think he’s not nice,” said the fourth-grader at Hope Academy. “I had this friend, and I just told her that he’s the same as any of us, so just treat him nice. If she has a question, she just asks me, and she understands it better now.”

via Activity helps kids learn about autism.

Mothers and children with Down syndrome photo slideshow

The Mommy Life blogger Barbara (a Montessori teacher and mother of 12) has a nice slideshow of photos of moms and their children with Down syndrome. As of this posting, there were 110 very sweet photos – click on the link and check it out!

On Mothers Day 2007, I published a photo album of pictures of mothers with children with Down syndrome.

They say every picture tells a story, and I figured these pictures would tell the story better than the thousands of words I’ve written in an effort to eliminate the fear of Down syndrome and to share the joy and love these special individuals bring to the lives of their families and their communities.

via Mommy Life: Photos: Mothers and children with Down syndrome.

Missouri Lawmakers Push to Mandate Autism Insurance Coverage for Kids

A group of Republican lawmakers joined Gov. Jay Nixon on Thursday to push legislation that would require insurance companies to provide coverage for certain therapies for autistic children.  Lawmakers attempted this last session but concerns about the cost of a mandate ended up killing the bill in the House. Those concerns remain but Nixon pledges 2010 will be the year that autism coverage becomes mandatory in Missouri.

As the mother of two boys with autism, Elizabeth Obrey has seen the progress that regular therapies can produce.  Her 4-year-old Chase now plugs through his A-B-Cs.  Her 7-year-old Nathan is opening up, beginning to read.

Their schooling is not cheap.  Even with insurance and a $500 monthly co-pay, Obrey pays thousands of dollars each year out of pocket for classes at Rivendale Center for Autism in Springfield. It is an overwhelming financial burden.

“When we moved, we sold a house and a business and that money, instead of reinvesting it in a house, it went to their therapies,” said Obrey.

With Nixon’s backing, a bipartisan group of lawmakers is pushing legislation that would not only mandate insurance companies provide coverage — up to $72,000 a year — but prevent them from refusing or restricting therapies.

“We know that 1 in 100 kids are being diagnosed, and we know that 1 in 58 boys born today will be diagnosed,” said Sen. Eric Schmitt, R-Glendale.

“As many of us know, autism is one of 12 major neurological disorders and the only one of those 12 that’s excluded from coverage by insurance carriers.  We believe that is grossly discriminatory and a civil rights issue,” said Rep. Dwight Scharnhorst, R-Valley Park.

Obrey said she talks to many parents who would jump at the chance to put their children in a program like Rivendale but who have no financial option to do so.

Arguments against the bill are a concern about the financial burden that could be placed on small businesses and the impact a mandate could have on already rising healthcare insurance premiums.

“This is another mandated benefit and, just like any other mandate, there is a certain amount of cost to require companies to provide that coverage, and, the smaller the group, the larger the impact,” said Rep. Kevin Wilson, R-Neosho.

For Obrey, even without coverage, she’ll sacrifice for her sons, because there’s no price for a chance at normalcy.

“I do think that our children are being excluded,” she said.  “If my child had cancer, would you pull chemo from them?”

Via Missouri lawmakers push to mandate autism insurance coverage for kids

How to Get Early Intervention Autism Therapy for Your Child

The good news is that it looks like very early intervention programs for children with autism really do help. The bad news is that services can be hard to find, and expensive.

Toddlers who participated in a study testing the Early Start Denver model for early intervention showed improved language skills and IQ, compared with children who didn’t get the specialized training, which emphasizes social skills and communication. The intensive therapy, which included 20 hours a week at home with a trained therapist and additional time working with parents, increased the IQ of the children by 18 points, compared with 7 IQ points in children who got more standard therapy.

Researchers and pediatricians have increasingly thought “the earlier, the better” when it comes to autism treatment, but this is the first hard evidence that working intensively with children who are younger than 2½ helps reduce the social and language deficits typical of autism. The study, which involved 48 children ages 18 months to 30 months, was published online Monday in Pediatrics.

Via How to Get Early Intervention Autism Therapy For Your Child

Mom Pleased with Support of Autistic Student

When Jill Mitchell first met with Yuma Elementary District 1 to inquire about services available for her autistic son, she was prepared to fight for them.

Mitchell, who moved to Yuma from Woodland Park, Colo., last summer, said services for her son Connor, 10, were not optional – she said she has read books and attended conferences and knows what works.

But despite some criticisms she had heard about special education programs at the district, Mitchell was pleased with what she found. “The fabulous thing about District 1 is that I didn’t need to fight because they agreed on everything,” she said.

The Arizona Department of Education audited Yuma Elementary School District 1 in October after a complaint was filed by a parent. The audit noted that 29 percent of special education teachers have not met the Highly Qualified standard in the subject area they are assigned to teach as mandated under the 2001 No Child Left Behind Act. And there are four positions currently filled by long-term substitutes.

Mitchell said she knew that her son needed a paraprofessional “and without blinking an eye, they agreed.”

Via Mom Pleased with Support of Autistic Student

Autism Odds: The Diagnosis is as Puzzling as the Behavior

“When you take a drug to treat high blood pressure or diabetes, you have an objective test to measure blood pressure and the amount of sugar in the blood. It is straightforward,” writes Temple Grandin. “With autism, you are looking for changes in behavior.”

Though she’s a PhD and a professor at Colorado State, Grandin is not a professional autism expert—in fact, her field is animal behavior. Rather, she’s described by the Autism Society as “inarguably the most accomplished and well-known adult with autism in the world,” and she’s the author of books on both animal behavior— Animals Make Us Human, Animals in Translation—and autism: Thinking in Pictures: and Other Reports from My Life With Autism.

As Grandin has recognized, diagnosing and even defining autism is challenging. Though parents whose children are severely autistic never argue about the syndrome, others say that the spectrum of the disorder is so wide that proper diagnosis is a puzzle with too many pieces. No wonder the prevalence, causes, and treatments of autism are so hotly debated.

Via Autism Odds: The Diagnosis is as Puzzling as the Behavior

Early Treatment Benefits Autistic Children, Study Shows

Clinicians have increasingly come to believe that the worst effects of autism can be blunted if the condition is identified and treated early enough. Now, the journal Pediatrics has published a study that seems to validate the theory.

The study is the first randomized, controlled trial for comprehensive autism treatment for children as young as 18 months old. While certainly not a cure for the condition, the study did find that intense early treatment yields major improvements in IQ scores, language processing, and in the ability to manage everyday tasks essential for early childhood development and education.

The University of Washington study was funded by the National Institute of Mental Health. It involved 48 children ages 18 to 30 months, half of whom were randomly assigned to receive the Early Start Denver Model, an intensive autism therapy protocol. The other half were assigned to a control group and received less intensive therapy.

After two years, those who participated in the Denver Model group had average IQ scores 17.6 points higher than the control group, putting them within the range of normal intelligence, while those in the other group gained just seven points, remaining in the zone of intellectual disability.

Via Early Treatment Benefits Autistic Children, Study Shows

Mall Program Helps Autistic Children Visit Santa Claus

Until last year, Debbie Lashbaugh’s grandson couldn’t visit Santa.

The mall was just too much for him.

“You cannot take him to Walmart, you cannot take him to the mall, because he melts down,” Lashbaugh said of her grandson Chase, 5, who is autistic.

“He cries and has a fit. … Most autistic children have sensory disorder. To go somewhere where there is bright lights and loud noise is too much stimulation.”

Then last year, a mall near Chase’s home in Dayton, Ohio, offered a special time for autistic children to visit Santa.

“All the other stores were closed,” Lashbaugh said. “The music was just barely audible, just barely. They did not have all the overhead lights on. It was a very serene environment.”

This year, Country Club Mall in LaVale is offering a similar program. “Sensitive Santa” is scheduled for 9:30 to 11:30 a.m. Dec. 6 — before the mall opens to the public.

The event is only open to families of children with autism. For more information, call Lashbaugh at (301) 707-0139.

Via Progam Helps Autistic Children Visit Santa Claus

N.Y. Band Members Live With Blindness, Autism, Down Syndrome

Many start-up bands dream of achieving worldwide fame one day.

That the band Flame achieved the dream is remarkable in and of itself. But the band is extraordinary in another respect: Each musician has a physical or mental disability.

Indeed, Flame is the only touring band in the world to be wholly composed of disabled members.

The upstate New York band’s members live with conditions that include Down syndrome, cognitive delays, autism, cerebral palsy and blindness.

Band member David LaGrange is blind and mentally disabled. He grew up in an institution and had a passion for rock ‘n’ roll.

“The Iron Butterfly, Led Zeppelin, sometimes I listen to AC/DC,” LaGrange, Flame’s drummer, said.

Via NY Band Members Live with Blindness,  Autism and Down Syndrome