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Issue No. 20, April 2009
Autism Awareness Month: Right on the Money This month will see many autism awareness fund raisers, and every one of them will raise not only money, but the question of where that money would best be spent. This column, originally published in Autism Asperger’s Digest in July 2008, is my answer to that question. Right on the Money
Among parents, teachers and other grassroots groups with whom I interact, two subjects are becoming increasingly prevalent. The first concerns groups wanting to do fundraisers for autism awareness, research, education or services. They ask my opinion as to what organizations might be worthy recipients of their contributions. Where will their dollars do the most good? The second group is often a subset of the first group. They are the deeply frustrated and sometimes desperate parents whose child has been flagged as an autism “possible,” but doctors and services in their area are so scarce that the wait for a diagnostic appointment can be six months or more. (If it comes at all.) They see this six months as an eternity of lost intervention time. And if it’s only six months, they may still be the lucky ones. In many areas, even children identified with autism either go without services or struggle on through schools whose staff may have little background or training in autism. These two subjects are as one in my mind. That is why groups who venture to ask me how their dollars might be best spent get a grassroots answer: reach out to your own community. Tie your bootstraps to your school’s and pull up on both of ‘em at the same time. This in no way denigrates the importance of the work being done by national education and research organizations or by university-based programs that address diagnosis, treatment and services. So please don’t write to me about how wrong I am not to support institutions that serve the greater collective good. I do support them, through memberships, pro bono work and participation in hundreds of their activities. But when asked to make a personal choice, choosing the greater collective good over my child’s individual good is not something I am able to do, and here is why... A tough and tender subject: Helping our kids deal with loss My thanks to all who wrote privately and publicly to comment on my Facebook essay about the 10th anniversary of my father’s last birthday. Some were grateful for the nudge to appreciate their own fathers, and some told me sadly about fathers who didn’t measure up. Many identified with my difficulties in trying to explain death to a small child with autism. At the time it was very daunting; there were virtually no resources. Today, that has changed. Just this month, three of the magazines featured in my This Month’s Reads section are carrying (or have carried) features on children and grief. Healing magazine’s spring issue focuses children and loss, fear and trauma, sanctuary and brain function during grief. Autism Asperger’s Digest articles “When Times Are Sad” and “The Loss of a Parent” offer autism-specific advice. Children’s Voice offered “Helping Children Grieve” in their November-December 2007 issue. CV’s parent, the Child Welfare League of America, publishes several books on the subject as well. Download their latest catalog here. For explaining death to a person with autism, check out Catherine’s Faherty’s excellent Understanding Death and Illness and What They Teach About Life. For a very straight-forward but sensitive children’s book, I like Lifetimes: The Beautiful Way to Explain Death to Children by Brian Mellonie. This book does not discuss feelings of grief or spiritual concepts, but rather frames life and all its variables between birth and death.
Click here to read my Facebook essay and tell me about your own dad. 1001 Great Ideas: Encouraging playground interaction Recess time spent on the playground can be a less-than-desirable activity for many children with autism. Issues relating to noise, environment, teasing or his uncertainly in handling different, often-spontaneous social interactions can be highly stressful for the ASD child. Some children harbor a deep need to be first in line to come in from recess (possibly a personal space issue). They spend the period filled with anxiety and rather than participate in playground activities, hover at the edges of the play area. Whatever the reasons, teachers and parents can be mindful of their challenges while still providing structure and opportunity for the child to become more comfortable on the playground.
Source: 1001 Great ideas for Teaching and Raising Children with Autism Spectrum Disorders, by Ellen Notbohm and Veronica Zysk, (2004 Future Horizons, Inc.) Afrikaans translation of Ten Things now available With abundant thanks to Drika Pronk, the article-length version of Ten Things Every Child with Autism Wishes You Knew is now available in Afrikaans. Drika’s site, www.thesoundhemakes.com , came about because “for parents and teachers in South Africa the resources available for autism is extremely varied or limited to English. My hope for this site is that you will find the resources I give you of use in the child's educational and day to day life. As a mother of one of these children I know what the challenges are. The financial aspect of raising a child with autism is astronomical and can potentially leave us feeling that we aren't doing enough for our child. I hope to bring you affordable products and services accessible to everyone. This website is only the beginning of the long road I am to travel, with God's grace and blessing it will be a wonderful journey.” Click here for Akrikaans translation of Ten Things on Ellen’s website Click here for Akrikaans translation of Ten Things on Drika’s website
Children’s Voice Working Mom (The Philippines)
Kudos, congratulations and clapping... Melbourne’s Child has won a Gold Award from the Parenting Publication of America their D3: Diversity, Difference and Diagnosis series: “The Melbourne’s Child series on the special needs and circumstances of children is touching and so well written that the reader is fully drawn in. The stories provide clear windows into the deeply personal experiences of having children with special needs.” Copeland Publishing, publishers of Melbourne’s Child and five other Child magazines in Australia, won a total of nine awards. Read Ellen’s most recent D3 article: Learning to Say “Sorry” ****** Autism Asperger’s Digest was recently honored with the Mom’s Choice Awards® prestigious Gold award. The annual awards competition recognizes authors, inventors, companies, parents and others for their efforts in creating quality family-friendly media, products and services. ****** Congrats to Bryce, who is off to a fast start for the 2009 track and field season, breaking his personal best times in both the 100M and 200M in the first meet of the year. ******
***** 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. March 2009: On hiatus February 2009: You Said It: Your favorite articles in 2008 // A Readers’ Favorite: Three Little Words January 2009: On My Soapbox: The Less the Merrier for 2009 // Winners quit, quitters win December 2008: On holiday – see you next year! November 2008: Interview: Autism and the Holidays October 2008: Childhood Obesity: is it abuse? // A-(scavenger) hunting we will go // Happily ever after, in real life September 2008: 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 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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Autism Awareness Month: Right on the Money
Visit me on Facebook Autism Asperger’s Digest 10th Anniversary Special! Digest celebrates its first ten years (1999-2009) with a special limited-time subscription offer: 1 year (6 issues) $19.95 plus $5 s/h. 50% off regular price of $49.95. Subscribe any number of years at that rate, via their all-new website, or phone 1-800.489.0727Article links in this issue
I always answer my email. Ellen's website and 
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Having been involuntarily conscripted, as most of us are, into the world of autism well over a decade ago, I’ve had the opportunity to observe many things that have changed monumentally and many things that need to change but have remained stubbornly static. Sometimes it feels like I’m sitting on the 50-yard-line of a game whose lead keeps see-sawing back and forth. Football teams have huge play books, because they know there is no single game tactic or strategy that will work every time against every opponent. So it is with autism too.
Helping our children cope with grief can be devilishly difficult if we are at the same time trying to come to terms with our own. Losing my father was much more difficult than I could have imagined, but even so, I received a small and lasting gift, a book I still cherish ten years later. I bought it with the intent of helping my children, but I never could get through reading it aloud without breaking down, and it was ultimately the book that pulled me through. I read it every day for months. Grandad Bill’s Story by Jane Yolen portrays, in beautifully simple and loving poetry, a young boy’s struggle to accept his grandfather’s death, talking to family members and learning that Bill was not just a grandfather but a brother, a father, a childhood playmate, a lover, a sailor. Particularly touching is his great-aunt’s explanation of how death is, in fact, “fair” and that nothing can destroy precious memories of a loved one.
And REVERBERATING congratulations to my beloved friend Brittney Corrigan-McElroy for her appointment as the new Director of Soapstone writer’s retreat. Brittney and I met as housemates at Soapstone two years ago, where together we wrote the Forward of The Autism Trail Guide. Since then we’ve shared a roller coaster car as parents of children on the spectrum, as well as meeting faithfully on Sundays, red pens in hand (well, hers is purple), as writers. Brittney is a woman of formidable intelligence, commitment and energy and Soapstone’s founders could not be passing their dream into better hands.
