Autism Awareness Month – every month

It’s wonderful, isn’t it? The energy and surge of activity that surrounds Autism Awareness Month every April is more inspiring with each passing year.  This year I was able to have a hand in observances all over the United States and even as far away as France and Morocco.

But I always go into Autism Awareness Month with mixed feelings. Shouldn’t every month be Autism Awareness Month? The challenge for all of us is to hang on to the collective consciousness we raise during the month of April and build on it throughout the year and all the years to come.

We are most definitely making progress. One very lofty place from which I can see it is what I call “the awards podium.” I believe I am happier than most authors when my writing achieves award status  because it means that books and publications about autism have taken their place among mainstream literature about parenting and education. This was not the case even a few short years ago. In that regard, I’m pleased to announce:

Three-peat! The Autism Trail Guide captures ForeWord Book of the Year nomination

Read the full press release here. Excerpt:

In a rare “three-peat,” autism author Ellen Notbohm’s latest release, The Autism Trail Guide: Postcards from the Road Less Traveled (2007, Future Horizons, Inc.), has been named a  finalist in ForeWord magazine’s prestigious 2007 Book of the Year Awards competition. The nomination is Ms Notbohm’s third in as many years. Her previous books, the widely-praised Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew, were finalists in 2005 and 2006 respectively.

The Autism Trail Guide: Postcards from the Road Less Traveled is an anthology of Ms Notbohm’s columns and essays from Autism Asperger’s Digest and other publications over the past several years. It was released in October of 2007 and sold out its first printing almost immediately.

Repeat awards for Autism Asperger’s Digest

For the second year in a row, the Autism Asperger's Digest has captured Gold Awards in the NAPPA Parenting Resources annual competition, and the MarCom Communications competition. "Parents and educators tell us how much they enjoy the Digest, the difference it makes in their lives and that of their child or student,” says Digest managing editor Veronica Zysk. “Receiving national recognition like this, from people outside the autism community, impresses on all of us associated with the Digest the magnitude to which our efforts impact the lives of others. It's humbling and at the same time, spurs us on to do even better.”

And while we are on the subject of winning...

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Daily life: Should you “let” your child win?

Should you let your child win at games you play together? Let the debate begin! In this corner, the naysayers: letting kids win sets them up for failure and humiliation when they play with peers, it sends the message that winning is the more important than fun, it deprives them of the opportunity to learn to lose gracefully. And in this corner, the advocates: adults have an unfair advantage so letting the kids win evens the field, a child who loses every time will become discouraged and give up playing. And in yet another corner – the gray area: isn’t there a difference between games of luck, like Candyland, and games of skill, like checkers or basketball? What if you only let them win sometimes? How often? What if you catch them cheating?

Make the whole debate moot for your child. If he is losing all the time, you are not playing the right games. Consider one or more of these options:

• Choose only games appropriate to your child’s developmental age, which may not be the same as his chronological age. When he has the skill set necessary for the game, he will win some of the time without you having to decide whether to throw the game.
• Choose games of luck, which statistically give your child as much chance to win as any other player.
• You can give your child a “handicap,” and be upfront in your explanation of why you are doing it. “I’ve played this game a lot and you haven’t, so you should go first and take two turns to start.”
• Choose games that are fun regardless of who wins. Mousetrap, anyone?
• Play games in teams of two. Your child gets the benefit of discussing strategy and decision-making with a peer model or adult, which is not only a valuable learning experience, but automatically softens a game loss. This is also a low-key way to introduce your child to games that are the next step up the developmental ladder for him.
• Play cooperative games, where all players work together for a common goal. The emphasis is on participation and fun, rather than competition and winning. Plug the phrase “cooperative games” into your Internet search engine to find games with subject matter that will appeal to your child.
• Like reading a boring book, don’t feel obligated to finish a game just because you started it. If your child is tired, bored, getting too frustrated or otherwise not getting anything beneficial out of the game, fold it up. Many’s the Scrabble game my family started where we ended up having more fun complaining about our terrible letters, making up funky nonsense words, thumb-flipping the tiles back into the box and heading to the kitchen for ice cream.

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On my Soapbox: The Walking Insolence of David Brooks

When New York Times columnist David Brooks wrote about the fall of New York governor Elliot Spitzer, he lumped him into the category of “Type A men ... just not equipped to have normal relationships. All their lives they’ve been a walking Asperger’s Convention, the kings of the emotionally avoidant.” (The Rank-Link Imbalance, March 14, 2008.) 

Hmm. I’ve been to numerous autism conventions but I’ve never been to an Asperger’s Convention of the Emotionally Avoidant; wouldn’t that be an oxymoron?  All the people I meet at autism conventions, many of whom have autism or Asperger’s, are trying to connect. My son Bryce would be mightily surprised to have himself judged as “emotionally avoidant” as he throws himself into his high school life of school dances, texting and emailing his friends, running on the 300-member track team (including traveling on the raucous, smelly over-crowded bus to away meets). Brooks’ outrageous remark denigrates Bryce’s dearly won social competence, acquired over a lifetime of patient teaching and coaching from dozens of teachers, therapists and family members who believed in him. And anyone who has ever met Bryce would hasten to tell you that has more integrity and common sense in his little finger than the likes of former Gov. Spitzer will ever have.

I wanted to write to Mr. Brooks: I read your column all the time. Now it’s time you read mine. 

Yes, it’s time for me to re-run Rx for Battle Fatigue, my description of how I confront this kind of ignorance, why I consider every attack like this an opportunity for enlightenment, and rather than discouraging me, it gives me the energy to go on.

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Rx for Battle Fatigue
Originally published in Autism Asperger’s Digest, November-December 2006

After you’ve been to a few hundred white-tablecloth business dinners, the food and the deal points change, but otherwise they are all pretty much the same. This one was ambling along that way, until the conversation veered off the path.

I’m sick of hearing about ADHD, announced the neatly pressed executive across the table. It’s nothing but a convenient excuse for parents who don’t have the guts to discipline their children.

Interesting, I replied. And is your experience clinical or practical? Do you work with these children, or are you parenting one? Are you a doctor, a psychologist, a teacher? Or do you live with a child with ADHD?

Oh, no, no, no, he said with a smug shake of the head. None of that. It’s just what I think.

And here’s what I think, I told him. I have invested thousands of hours and dollars with many devoted professionals who possess a body of factual knowledge strongly supporting that ‘what you think’ is incorrect, unkind and judgmental. People like you make me more tired than an entire room full of ‘hyperactive’ kids...”

My response was, admittedly, one of exasperation.  (Since then I have learned to) counter in a thoughtful, respectful way that emphasizes how many different ways there are to approach the issues within autism, different answers for each different child and family, and that in our differences we are still pursuing the same end goal – that each child with autism achieve the fullest of his potential and be able to take his place in society as an adult carrying as much of his own weight as possible. I point out that this goal is no different from what most people want for themselves. Every time I get a return response along the lines of gee, I never thought of it that way or wow, I didn’t know that – I know I did the right thing in putting myself in the line of fire and “taking one for the team...”

Read the full column here.

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Ten Things part of Autism Speaks’ 100-day Parent Kit

Ten Things Every Child with Autism Wishes You Knew is part of newly released Autism Speaks 100-day Kit, created specifically for newly diagnosed families to make the best possible use of the 100 days following the diagnosis of autism. From the Autism Speaks website:

“The kit contains information and advice collected from trusted and respected experts on autism as well as from parents of children with autism. There is a week by week plan for the next 100 days, as well organizational suggestions and forms that parents/caregivers can use to help with the paperwork and phone calls, as they begin to find services for their child.”

By filling out the survey on the Autism Speaks website, families within six months of diagnosis can order a kit which will contain personalized information specific to the child's age and location. An Autism Speaks Autism Response Team coordinator will contact the family by phone to get further information necessary to personalize the kit.

Full information here

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This month in Autism Asperger’s Digest

Three Little Words
Postcards from the Road Less Traveled, Autism Asperger’s Digest
March-April 2008

Excerpt:

Another February has come and gone, and that makes twenty-something times I will not have received a Valentine from my husband. He has a long-standing allergy to what he calls “commercially mandated” holidays, and I really don’t care because 365 days a year, he shows his love in dozens of ways...

The good thing about growing older is that your kids grow older too. One day they emerge from childhood and, rather than telling you all that you do wrong, they begin to tell you everything that you did right. Connor is 20 now and Bryce is nearing 16, and they tell me that although they certainly heard those three little words “I love you” from me on an ad nauseum basis, it was a number of other three-word phrases and the actions that accompanied them that really imprinted the I-love-you message on their hearts.

“I’ll be there...”

Autism Asperger’s Digest
Two-time MarCom Gold Award winner
Two-time NAPPA Parenting Resources Gold Award winner

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People in your neighborhood

Following are some groups and organizations who have contacted me recently. These groups are all actively involved in supporting families living with autism.

GOSHEN, INDIANA

Asperger/High Functioning Autism Parent Group of Goshen
Meetings first Monday of the month at Eighth Street Mennonite Church, 7-8:30 pm
602 South Eighth Street, Goshen, IN 46526
Contact Christine Guth christine@adnetonline.org
Or Kaylene Ediger akediger@comcast.net

BOONEVILLE, NEW YORK

1st Annual Autism Walk and Auction, April 26, 2008

Boonville VFW Post 5538, 108 Park Ave.
10:00 Registration, 11:00 A.M. walk begins, 1:30 auction
For more information, please call Lucrezia Johnson at 376-8696 days or 942-2938 evenings

Proceeds will be donated to UCP Kelberman Center for Autism Services. Walk is supported by Northern Regional Center for Independent Living and Adirondack International Speedway

SNOHOMISH, WASHINGTON

The ARC of Snohomish County Presents
The 1st Annual Connecting Families Special Needs Safety Fair
An Open Dialogue and Education on Keeping our Children Safe
Everett Community College Jackson Center, 2000 Tower Street
Saturday April 12^th from 10am to 5pm

This all day event is focused on keeping one of our most vulnerable populations safe.  Our speakers include Dr. Steve Becker on keeping our children secure while dealing with developmental disabilities, Randy Fey of Project Lifesavers speaking about programs and technology designed to quickly locate children, and Detective Lee Malkow speaking about safety in cyberspace. Panels will include Snohomish County Search and Rescue, The American Red Cross, Everett Police, Lynwood Police, Snohomish County Emergency Services, Snohomish County Sheriff’s office, and more. Life Touch Studios will be on site to create and donate 75 Smile Safe Photo ID Kits a program that offers 24/7 rapid response system supported by the NCEMC!

Contact Connecting Families at The Arc of Snohomish County: 425-258-2459
Email: Jamie@arcsno.org  or Ronnie@arcsno.org

MARION COUNTY, WEST VIRGINIA

School-based occupational therapist Crystle Bennington says, “We are attempting to start an Autism Support group in our county and the response has been overwhelming!  It is so rewarding to see parents, teachers and therapists join together to discuss issues affecting those with an autism diagnosis.  Not only do we share our worries and concerns, but our triumphs and our satisfaction at seeing our children succeed.”

Contact:
Marion County Schools, Special Education Dept.
304-612-9509
200 Gaston Avenue
Fairmont, WV 26554

CAIRNS, QUEENSLAND, AUSTRALIA

Catholic Education Services
130 Lake St.
Cairns, QLD, Australia
(07)4050 9722
Website: http://www.ceo.cairns.catholic.edu.au/student_services/special_needs.html

Mississauga, Ontario, Canada
The Dufferin-Peel Catholic District School Board is creating a resource guide on ASD. For more information contact:

Richard Gough
Itinerant Resource Teacher - ASD
Special Education Department
Dufferin-Peel Catholic District School Board
40 Matheson Blvd. West, Mississauga, Ontario
905-890-0708 ext. 20177
Website: http://www.dpcdsb.org/CEC