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 | Issue No. 17, November 2008
My publisher, Future Horizons, Inc. and I want to thank our readers for your loyalty and support. From now through December 5, you can enter our Holiday Book Giveaway – ten opportunities to win a signed Ellen Notbohm book of your choice. Entry is open to current and new subscribers this newsletter. Entering is easy: just click the links below for either new subscribers or current subscribers. Entries will be accepted through December 5. Winners will be notified the following week and books shipped in plenty of time for holiday giving. Be sure to enter using the email address through which you wish to be contacted. I’ll be in touch with winners to get your book choice and instructions for inscription. Enter to win now! New-subscribers | Current Subscribers
Interview: Autism and the Holidays My 2007 interview with Stan Goldberg is now available again.
Listen in and hear how to empower your child with autism during this bustling time. Along with San Francisco special needs activist Katy Franklin, I join “Senior Dad” Stan Goldberg in the Autism Briefing Room, explaining how the holidays effect our children with autism and their friends and families. We offer tips on what to do before and during holiday parties, and strategies for graceful departure. What to do about gifts and gift lists, and how to handle the lure of those attractive TV commercials? Katy and I share some of our experiences with our children and what worked for us. Some of the lessons we learn apply to teaching and handling all children as well as helping others begin to understand the challenges of a family with a child with autism. On My Soapbox: A John Wayne moment for all of us John Wayne said it best, in the days following the election of John F. Kennedy in 1960: "I didn't vote for him, but he’s my president, and I hope he does a good job." How I hope that those, in President-elect Obama’s own words, “whose support I have yet to earn,” will heed The Duke’s wisdom from a half century ago. And the message is the same for those who did vote for our new president. "I did vote for him, now he’s my president, and I hope he does a good job." President-elect Obama did a rare thing in his victory speech. In the same breath as he acknowledged those who hadn’t voted for him, he made as bald an appeal as can be made in four words: “I need your help.” It’s in everyone’s best interest that our new president succeed, so how do we help him do that? I believe it will take a stiff cocktail of realism and accountability, both personal and governmental, in proportions we have yet to fully confront. We can begin by our own acknowledgment that no president and no family can or should be a one-issue entity. We all have issues about which we feel passionate; for many readers of this newsletter, the issue is autism and other “special needs” (I hate that term, but that’s another column), and the educational and health needs inherent within it. For those of us with children on the spectrum, we live with the urgency of these needs every day. Our task now is how to advance toward meeting those needs in a realistic manner. One thing of which I grew intensely weary during the campaign was the constant rhetoric about how we should fight, fight, fight. Fight for a whole laundry list of unquantifiable intangibles. Fight for change, opportunity, the future. Fight for children, fight for justice, fight against corruption, greed, enemies (within and without our own country). Fight for what’s right and what should be. Man, that’s a lot of fighting. How exactly am I supposed to do all this fighting? What weaponry? Guns, fists, words, money? And what exactly, specifically is the prize in all these fights? Enough with the fighting. Bring on the carefully thought out, well-crafted solutions that have vision and scope and that come about through respectful discussion and compromise. Within our own autism community, we can do our part by breaking out of our narrow sub-focuses and helping to build, both locally and nationally, broad programs that benefit all our kids throughout their lifespans. Autism is not just about children, it’s about teens with typical adolescent challenges in addition to their autism, it’s about young adults who are aging out of school-age programs in every increasing numbers, needing jobs, safe living arrangements, adult health care. Autism is not just about vaccines, or any other single possible cause; research and legislation has to extend across many avenues. Autism is not the only need served by public school special education; finite funding has to cover all children with qualifying learning differences. In the current economic climate no President is going to be able to implement all he would hope for in a perfect world. President-elect Obama did pledge to fully fund the 2006 Combating Autism Act. It’s a reasonable pledge and it is within reach, but it is only one of countless issues that will press this man to the limit of human ability, so our first question, in this John Wayne moment for all of us, should be: How can we help? Familiarize yourself with President Obama’s positions on Americans with disabilities and autism at the following Autism Society of America links: Obama’s plan for supporting American with Autism Spectrum Disorders: One of the more fulfilling things about being a writer is helping other writers find their voices and make their way into print. I enjoy this editing and coaching immensely, and every writer with whom I interact enhances my own writing. At the Willamette Writers booth at last weekend’s Wordstock convention here in Portland, I had the honor of being asked to give a few words of advice to a bright, budding 11-year-old poet. How I look forward to seeing his work get the recognition it deserves! And I know from hearing from so many of you that there are writers among you, so here are a few opportunities to make your voice heard: Call for articles – Healing magazine. Healing has plans for an all-autism/Asperger’s issue in 2009 and is looking for contributions from clinicians, medical doctors, family members and people with autism themselves. Submissions should be 1,200 words or less, and may be edited for space. The deadline for submission is January 31, 2009. Email to: patricia.sullivan@kidspeace.org . Please include a brief bio and headshot photo. Browse the Spring-Summer 2008 issue here [pdf]. About.com’s autism blog editor is requesting your advice for upcoming holiday-themed articles: what are the best autism-related products available? Lisa Jo Rudy says: “I'm planning to write a few articles that recommend ‘top’ autism gifts for various different groups of people (kids with autism, adults with autism, parents of children with autism, teachers, therapists). What autism-related products have you purchased or used that you would highly recommend to others? What products have you purchased or used that you would NOT recommend? What autism products (including toys, books, DVDs, clothes, etc.) are on your wish list?” Respond here. Deadline extended – Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum seeks honest, thoughtful, well-written prose and poetry about being autistic and loving someone with autism. Deadline for the inaugural issue has been extended to December 31.
At this time, Hyperlexia would especially welcome fiction, and submissions from those who are themselves on the spectrum. Submissions should be 1500 words or less. Send submissions inside the body of the email, as well as attached as a Word document, to submissions@hyperlexiajournal.com. Thank you to everyone who wrote with anniversary wishes for Mark and I. We are touched and grateful. The link to my column What We Leave Unsaid, about the rough terrain on the road to our 25th anniversary, was the single most-clicked link ever published in this newsletter. If you missed it, read it here or in The Autism Trail Guide: Postcards from the Road Less Traveled. Read What We Leave Unsaid here. **** Yes, they can: congratulations to Bryce and Connor! **** I always answer my email. But we live in a world of imperfect servers, aggressive spam filters and power outages. If you’ve written to me and I haven’t answered, please try resending your message with a different subject heading. ****
Excerpt: Ask any parent whose child has been identified with autism. It’s likely they will never forget the moment they first heard the word applied to their child. Some will have been forewarned. For others, the shock will be epic. For many, what follows will be a fog, and this is what it feels like. It feels like your focal point, the one you took for granted for so long, has been moved. And now you get to try to find it in that fog. Just try to pin the tail on this donkey. We know there will be doctors and therapists, special educators, diets, modifications and accommodations. But in those initial moments and days, I’ll bet we all asked the same question: what is the first thing I should do? My stock answer – “Keep breathing” – is usually not met with enthusiasm. Something more profound is expected. And yet, isn’t breathing a matter of considerable importance? Isn’t it breathing that allows us to regroup, recharge and move forward? It cannot be separated from everything else a parent is faced with doing for their child with autism. It is the first thing that needs to happen. My more substantive answer is that the first thing parents need to do is continue to see their child as just that – a whole child, not a baggie of broken parts... **** This month in Ancestry
Then there are the ones who left us nothing but mystery. And just enough fact to pique fascination... ****
Excerpt: Physical activity is critical to any child’s overall health, and yet it’s a regrettable truth that for every child who adores PE class, there’s another for whom it is the worst part of the day. Many adults harbor hard-to-forget childhood feelings of hurt at “always being the last one picked for the team.” Today, PE struggles for its place in the schools against the perpetual threat of budget cuts. Unlike math, spelling or reading, PE classes are generally mass affairs wherein students are not grouped by ability level and are therefore instruction is not paced or adapted accordingly. The one-size-fits-all nature of PE class can leave some children feeling frustrated and demoralized, but fortunately, there are many ways to accommodate the lesser-skilled child in a manner that promotes success and self-esteem... and The Other Side of the Desk: Are you a challenging parent? Excerpt: As transitions go, my son’s transition to middle school had been smoother than any parent with an IEP in hand could hope for. It had been a very good year with very good teachers. But as the year wound down with alarming speed, the scheduling of the annual IEP meeting just wasn’t happening. Repeated requests – at increasing decibel level – to resource teachers went unresolved amid scheduling problems, administrative issues, illnesses and other roadblocks. When we finally did meet, five days before the end of the school year, I told the excellent resource teacher only half-jokingly, “You’re almost there. Only five more days and then you are done with me.” And this excellent teacher stopped in his tracks and looked at me with surprise. “Oh no,” he said. “No. I have had some challenging parents this year, and you are not one of them.” At that, it was my turn to stop in my tracks. What, I wanted very much to know, constitutes a ‘challenging’ parent? ... **** Newsletter archive on my website: if you are new to our newsletter community, please visit the newsletter archive on my website and browse some popular past features here. October: Childhood Obesity: is it abuse? / A-(scavenger) hunting we will go / Happily ever after, in real life September: Children’s Voice, My Voice / Autism Speaks’ new School Community Tool Kit August 2008: Please read Michael Pollan’s In Defense of Food / New autism journal seeking submissions / At the Movies July 2008: Unbundle Me / The I-can’t time capsule May-June 2008: Play time: Ten Things to do with a Big Box / Teacher of the Year April 2008: Rx for Battle Fatigue / Should you “let” your child win? March 2008: Parent Eye Contact: How It Builds Children's Self-Esteem February 2008: Thinking About Your Family Health History / Book excerpts on website Book excerpts on the website are all new as of September, a great opportunity to take a test drive: Ten Things Every Child with Autism Wishes You Knew Ten Things Your Student with Autism Wishes You Knew 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders The Autism Trail Guide: Postcards from the Road Less Traveled If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at www.amazon.com. It’s easy to do and you don’t have to post your real name. Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at here.
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Holiday book giveaway
Interview: Autism and the Holidays On My Soapbox: Our John Wayne Moment Your voice requested Quick stuff, updates, tidbits Book Excerpts on Website
Howdy from windblown Manzanita beach, Oregon. This was taken just moments before the gorgeous sunset at the left side of the page.
New translation available
Future Horizons new catalog is an outstanding collection of resources for family members and professionals. New offerings include great discounts on collections, including the Ellen Notbohm Library and the Dr. Temple Grandin Library. When requesting the catalog you can also ask for FHI’s popular free poster, 14 Signs of Autism. Ellen's website and 
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The editors want genuine and truthful writing about autism: “Our journal is a celebration of real life with autism, both the good and the bad. You can be serious, sad, or funny. We believe in respecting the diversity of the human mind. Discriminatory writing or hatred of any kind will not be published.”
This month in Calgary’s Child
