Reflections

If anyone is still out there, you have probably guessed by now that this blog got to be too much for me to keep up. Being a working mother of two means I don't have much time for pursuits like this. And I will admit it - Facebook has reared its ugly head in my life, and I waste too much precious time there. But it helps me connect with people efficiently, so off I go!

I will hang on to this blog a while longer. I am toying with writing more personal posts, rather than just posting links to information. I don't know if I am brave enough to do that yet.

I thought about this blog after watching several episodes of "Parenthood". If you have not seen it yet, it is on Tuesday nights at 10:00 pm on NBC. One of the characters on the program is a child with Asperger's. A producer on the show has a child on the spectrum and he is responsible for this plot direction. And if you ask me, except for a few bits of melodrama, they get a lot of it right. I can so relate to the mother, to the overexplaining of behavior, to the general dreadful anticipation of what is going to happen next. But they also show how normal life can still be, how they are still a typical family, how they still love their child fiercely.

I confess that there is something very legitimizing about seeing your own struggle reflected back at you in popular culture. Suddenly my experience seems validated. Somebody else is going through the same thing! It makes me feel less alone. Finally! Someone is trying to get across to the rest of the world what it feels like to parent a child on the spectrum.

I wonder how Aspies feel about this portrayal, and if the character of Max will be developed more, so we can get more of his perspective worked into the show. It will be interesting to see where this all goes.

A Parent of a Child with ASD Goes to see "Ponyo"

This account of "Ponyo" really caught my eye:

"In Ponyo, I found a character who probably was never intended to display signs of PDD-NOS. But there she was on the big screen, reflecting so much of what I see every day in Kayleigh. And Ponyo inspired hundreds of children and parents in the audience, myself included, by wholeheartedly embracing her potential, no matter how others chose to define her."

Both of my kids have been intrigued by the commercials and they really want to see it. I am definitely going to make time to go with them!

My Brother Has Autism

This NPR story is generating buzz.

New Discovery Health Program

Sorry I have not been posting. Vacation and school preparation got in the way.

Discovery Health will be airing a program on October 1st called "Autism X6" which profiles a family in which all 6 children have been diagnosed somewhere on the spectrum. Here is a press release.

Resources for Learning to Tie Shoelaces

Shoe tying is still a challenge in our household. When I saw this post in ParentHacks, I thought it might be a good one to share. Check out the links in the comments, too.

Advice for Employers

Here is a document created by something called the Job Accomodation Network (ultimately part of the US Department of Labor) entitled "Employees with Asperger Syndrome". It looks like it could be very useful for employers who might not know much about AS. It's full of simple, specific suggestions for supervisors. This could be a great help for parents of young adults trying to ensure a positive first experience for someone with AS.



I found this via the PDF Search Engine. Just type in a term like "Asperger" and you will find all sorts of interesting things. You will need a PDF reader like Adobe Acrobat in order to view these documents.

Reading Fiction Improves Social Skills

A group of Toronto researchers discover that "readers of narrative fiction scored higher on tests of empathy and social acumen than those who read non-fiction texts. And follow-up research showed that reading fiction may help fine-tune these skills: People assigned to read a New Yorker short story did better on social reasoning tests than those who read an essay from the same magazine.

Full article here.

Autism Storyline on "Days of Our Lives"

Autism hits the soaps.

New Study Pinpoints 6 Autism Genes

"Research on large Middle Eastern families has helped scientists pinpoint six new genes implicated in autism, a new study published Thursday said.
The research "strongly supports the emerging idea that autism stems from disruptions in the brain's ability to form new connections in response to experience -- consistent with autism's onset during the first year of life when many of these connections are normally made," a team led by researchers at Children's Hospital Boston and members of the Autism Consortium said."
Full article here.

Children Sought for Study

"Autistic children sought for medical study
SEATTLE - Scientists searching for the causes of autism are taking a new and hard look at families who have only one child with the developmental disorder, according to the University of Washington. Recent research has shown that the majority of autism cases occur in families with just one child who has disorder, and that's why the University of Washington's autism center is seeking 200 Washington and Oregon families to participate in a new North American study. Parents who would like to enroll their families in the study or who have questions may contact Erin Kipple, project coordinator, at 1 (800) 944-9701 or emh@u.washington.edu, according to the announcement. Other institutions participating in the study are Baylor, Columbia, Emory, Harvard, McGill, Vanderbilt, Washington and Yale universities and the universities of California, Los Angeles; Illinois at Chicago, Michigan and Missouri."
-the Chronicle

More info here on studies at the University of Washington Autism Center. While you are there, you might want to browse around a bit. There is some information for parents/caregivers, a page of autism facts, and access to free online copies of research articles from scholarly journals.

Teen with AS Aims High

I love stories like this one reported by Barbara Hollingsworth in the Topeka Capital-Journal about a teen with Asperger's Syndrome who has been selected to serve as a Congressional Page this summer in Washington, DC. Ben Berlin will be working for Rep. Nancy Boyda, D-Kan.

ZAC Browser

This is cribbed directly from {A}:
Brian Bergstein reports for ABC News about a man who created an Internet browser for children on the spectrum:
"The Zac Browser greatly simplifies the experience of using a computer. It seals off most Web sites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public Web sites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium."

Try it out here.

Sensory Integration Classroom

Newspaper articles that discuss sensory integration are rare. Here is a good one by Ginny Miller of the Northeast Mississippi Daily Journal.

Fitness for Children with Autism

Fitness Therapist Eric Chessen writes about creating exercise programs for children with autism. He has also created a DVD called "Beyond Boundaries: Fitness for the Young Autism Population." His article is here. Information about the DVD is here.

Online Videos

The UC Davis M.I.N.D. Institue has posted online videos from their Distinguished Lecturer Series. Take a look here.

Challenges and Triumph

This is an inspiring piece from the Poughkeepsie Journal by Jesse Saperstein, a man with Asperger's Syndrome who hiked 2,174 miles to raise money to treat pediatric AIDS. Saperstein reminds us that "integrity and perseverance are common and often overlooked traits of mild autism."
He continues:
"My advice for other individuals with high-functioning autism is both optimistic and realistic. People do judge a book by its cover, and first impressions will always be the most important. Therefore, it is sometimes necessary to "impose yourself" on the lives of those who come to knee-jerk conclusions about you. Tell them who you are and do not be modest about your accomplishments. The victories will inevitably follow."

Inspiration

It's Autism Month, and I feel inundated with "movie of the week" type stories about the "tragedy" and "suffering" of autism. So for once, I decided to create a post that is not about autism at all. It's about keeping perspective. These sites have provided me with inspiration, empathy and understanding for the great variety of experiences we all have as humans on this tiny planet. We are incredibly fortunate to be here at all. These sites remind me to enjoy the ride:

My Daily Insights - Get a free motivational quote every Monday through Thursday and an inspirational story on Friday

Foundation For a Better Life - Free inspirational quote delivered to your Inbox each day.

Writer's Almanac - This is also National Poetry Month. Writer's Almanac sends a free poem every day, along with a few paragraphs celebrating literary and other interesting events, and sharing biographical sketches of writers.

Better Brushing

Via AutismVox, here is an oral hygiene game that might help kids brush their teeth more throroughly. Here's the article by Colin Barras.

Call for Panelists in NJ

Call for Panelists
Mini-Conference on Inclusion Benefits and Strategies for Middle and High School
Stockton State College, Pomona, NJ
Saturday, April 26, 2008
9:30 am -12:30 pm

As a part of the Mini-Conference on Inclusion, we are organizing a panel session to explore and reflect on experiences with Inclusion practices in grades 8-12. Parents of middle and high school students who are receiving special education services are invited to join this discussion and share their experiences with inclusion in middle and high school. The panel portion of the mini-conference will last from 45 minutes to an hour and include diverse points of view including parents, teachers, and school staff.

Panelists will receive a $75 stipend and an appreciation gift for their time. Self-Advocates are invited to participate in the panel with their parents. Both parents and students will receive the stipend and gift for their participation. Continental breakfast and lunch are included.

If you are interested, please send an email to scollguedes@spannj.org or call 609-442-4132 before Friday, April 18th. Please include a brief summary of your experience and tell us a little bit about yourself.Susan Coll-Guedes, Ed.M.Parent Group Specialist- START Project Atlantic, Cape May, Cumberland & Salem Co.Statewide Parent Advocacy NetworkPhone: 609-442-4132 Email: scollguedes@spannj.org www.spannj.org

Lego Therapy

Marie McCullough of The Philadelphia Inquirer writes of pediatric neuropsychologist Dr. Dan Legoff's approach to social skills therapy using a common interest among some children on the spectrum - Legos.
"In Legoff's opinion, too many popular strategies involve "skillstreaming" - systematically explaining, modeling, and role-playing acceptable social skills to children.
"I found that approach to be, first, boring and painful to go through for the kids. And second, it didn't seem to work," said the psychologist, who has treated children with neurological disabilities for 20 years. "I needed to find something that they could practice but that they would enjoy and be motivated to do."
About 15 years ago, during post-doctoral training in Honolulu, Legoff noticed that his autistic patients, most of them boys, ignored a playroom full of toys - except for Legos.
A hallmark of autism is an obsessive dedication to one or two interests or activities - typically involving taxonomies, mechanical systems, hierarchies.
"A couple kids came with Lego creations they made at home," Legoff recalled. "In the waiting room, these kids started talking to one another, which surprised their parents. These are kids that don't have any friends because they're socially rejected or isolated."
Thus was born the Lego Club."