From CTV.CA, London [Ontario] Free Press:

TORONTO — The father of an autistic teenager who has camped out at the Ontario legislature for more than a week is vowing not to eat until the province agrees to eliminate the backlog of children waiting for a crucial but costly therapy.

Stefan Marinoiu, 49, who has been drinking nothing but water for eight days, is trying to put pressure on the province to deliver the treatment more quickly to autistic kids, including his 15-year-old son Simon.

Marinoiu’s goal is to eliminate by November the wait list of 1,148 eligible children who are still waiting to receive intensive behavioral intervention therapy, or IBI.

From the Chicago Tribune:

Adolescents who were adopted as infants are significantly more likely to have a psychiatric disorder as those who were not adopted, a study released Monday has found.

While emphasizing that most of the adoptees in the study were psychologically healthy and faring well, the researchers said that as a group they faced a greater risk for two psychiatric conditions: attention deficit-hyperactivity disorder and oppositional defiant disorder.

… [Lead study author Margaret Keyes of the University of Minnesota] stressed that the study should not alarm adoptive parents. Being born male—adopted or not—also is a risk factor for disruptive behavior disorders, she noted, “but no one is overly concerned when they give birth to a son.”

The study was published in the May issue of the Archives of Pediatrics and Adolescent Medicine.

Part 2 of a series

Reporter Erika Schultz, writing in the Seattle Times, documents the lives of 65-year-old Ron Johnson and his 41-year-old son Ronny, who has autism and is nonverbal. Ron had been managing as the sole caregiver for Ronny and was determined to do so indefinitely, but emergency heart surgery intervened.

Ron’s health emergency pushed Ronny to the top of the waiting list for state-provided care, and so he’s now able to live in a group home. But Ron’s not sure the placement is a good solution for his son — or for himself.

This story is part of a Times series on people with intellectual disabilities who outlive their caregivers. See earlier post here: For adults with intellectual disabilities, an uncertain future.

Seek out graduate programs in applied behavioral analysis

By Jane Gross in the New York Times:

Unable to find appropriate support for their kids, many parents of children with autism are going back to school to learn how to perform applied behavioral analysis (A.B.A.) themselves. They’re spending lots of money and even changing careers in the process — but they believe it’s worth it if it helps their kids learn.

Featured is a program at Caldwell College in New Jersey.

In most states, a generic special education degree is sufficient to treat children with autism and to use the particular techniques of A.B.A., the only therapy for the disorder with proven results in peer-reviewed research. But many colleges and universities now offer specialized degrees in A.B.A. Graduate programs are offered at Northeastern University in Boston, Florida State University in Tallahassee, the University of North Carolina at Wilmington, the University of Maryland in Baltimore County and California State University in Los Angeles, to name a few. Administrators at several of the programs say they, too, have parents of autistic children among their students.

For some parents, it’s just the latest in a long line of sacrifices they’ve made for their kids.

(more…)

Harnessing the creative energy behind the diagnosis

Wall Street Journal columnist Sue Shellenbarger offers encouragement to parents of kids with ADHD, introducing us to some adults who were labeled as children and went on to build satisfying, productive lives for themselves.

Among those she lists: Ty Pennington, the host on “Extreme Makeover: Home Edition;” JetBlue founder David Neeleman and Kinko’s founder Paul Orfalea (above), who also has dyslexia. All had challenging childhoods, run-ins with school authorities, and teachers who didn’t believe they could succeed at much of anything. Neeleman said he thought he was “stupid.” Their stories are more relevant now than ever, with an estimated 8 percent of school-age children carrying the ADHD label.

The common thread in each case was the help of supportive parents who valued their children’s individuality, emphasized their strengths and didn’t give up. (Medication also gets a brief mention, as do behavior modification techniques.) Paul Orfalea praises a saying his mother used: “Look at your five fingers. All five are different for a reason. School wants to make you all the same.”

It’s worth noting that the strategies suggested here for helping a child with ADHD are markedly similar to those needed to help any child, disability or not.

If only Shellenbarger had edited out her references to ADHD “sufferers,” especially in light of the positive messages offered by parents. The phrase “people with ADHD” would have felt so much better.

Readers, now it’s your turn. Any tips of your own to share?

She files complaints, says boy with autism was isolated 78 times in 11 weeks

From the Louisville [Kentucky] Courier-Journal:

Jeanie Montgomery of Oldham County says the local school district violated the rights of her son when staff members repeatedly locked him in a 32-square-foot room. She has filed complaints with the Kentucky Department of Education and with child-protective-service officials over Crestwood Elementary School’s use of the time-out room.

“I am afraid for his safety,” said Montgomery, adding that her son has limited speech because of his autism and can’t describe what happened.

Oldham school officials deny any abuse and are cooperating fully with child-protective services, spokeswoman Rebecca DeSensi said.

… Department of Education guidelines, issued in 2000, state that placing a student in seclusion is a “drastic measure that should only be used as a last defense measure” and that schools should “never lock a student in a closed setting.”

For World Autism Awareness Day, an essay that attempts to help readers understand the complexities of loving a young adult with profound special needs.

Writing for a Seattle Post-Intelligencer blog, Janice Williams says she doesn’t need the smiling children featured on CNN to explain autism to her. Her 27-year-old son “Todd” has autism, along with medical issues and challenging behaviors. He lives in a nursing home — and knowing that he is well cared for there allows Williams to sleep at night.

Williams offers encouragement to young parents who may be fearful about their child’s future.

It can get better. Sometimes it gets worse before it gets better, but overall, I’ve found the aging process to help. Some things do pass away with time. New challenges arise, but you’ll be stronger and more experienced, so they will not feel as hard as the challenges at the beginning …

… Today, I salute the parents who love the children who are different. Who don’t fit in. Who never will fit in.

Years ago I made a promise to my child “There is a place for you in this world, and I will help you find it.” I renew that promise every day, with each small loving step I can find it in myself to take — steps made possible by the love and support of everyone in my family. Together, we have found a happy life for ourselves and this unique child. We dreamed new dreams, and who’s to say our dreams are not worthwhile?