Here at the Thinking Person’s Guide to Autism, we’re about (a) having fun with our families (b) evidence-based approaches to autism (d) innovative fund-raising and (c) social media. So naturally we are participating in The Autism Science Foundation’s campaign, Recipe4Hope. There are a lot of needs in the autism community, but we believe that funding sound autism research comes high on the list. So won’t you join us? Every dollar donated to the Autism Science Foundation from now through December 31 will go directly autism research. This video (1 min 13 seconds) explains the campaign. For those of you who aren’t familiar with the Autism Science Foundation, here’s a short statement of its goals: The Autism Science Foundation funds scientific research to find the causes of autism and to develop treatments that will make a difference in the lives of children, teens and adults. This holiday season, outstanding research is…
Year: 2010
Lynn Hudoba www.autismarmymom.com We are grateful to Lynn for publishing this essay — hers is a difficult position, and she is brave to share her experiences so that others can learn from them. A reminder: while The Thinking Person’s Guide to Autism commenting policy encourages civil disagreement, personal attacks will be deleted. -Editors If you’ve ever considered pursuing biomedical interventions or “biomed” for your child with autism, you are probably aware that these approaches — which include special diets, dietary supplements, off-label prescription drugs, and heavy metals detoxification — are controversial. Biomed proponents believe their approach can “recover” children with autism, and reduce or eliminate autism symptoms. The mainstream medical community considers many biomed interventions unproven and untested, and some, such as heavy metals chelation, potentially harmful. It is not surprising that attitudes towards biomed approaches get polarized. Still, every family I know has consensus about biomedical approaches. Not mine.…
Our editorial team spent much of the Thanksgiving break poring over the inspiring, helpful, & cathartic stories we’ve published on this site — and making hard decisions about which ones to include in the TPGA book. (Twitterheads might have noticed Liz’s weekend retweets of our more than 100 essays.) We’re well on our way to an early February publication. We had planned to publish a list of contributors on this site today, but have decided that there’s no reason to be formally non-inclusive when every last TPGA stories is worthy and good. To paraphrase the Temple Grandin HBO movie, it’s a matter of being different, not less. So, we’re grateful for being a blog as well as a book, so that we can continue to feature your wonderful stories every week. Please do keep sharing them with us. Emily, Jennifer, Liz, and Shannon
Shannon Des Roches Rosa with Robert Rummel-Hudson www.squidalicious.com www.schuylersmonsterblog.com My son Leo’s life was transformed when a five-dollar raffle ticket turned into a brand-new iPad. I’m not exaggerating. Before the iPad, Leo’s autism made him dependent on others for entertainment, play, learning, and communication. With the iPad, Leo electrifies the air around him with independence and daily new skills. People who know Leo are amazed when they see this new boy rocking that iPad. I’m impressed, too, especially when our aggressively food-obsessed boy chooses to play with his iPad rather than eat. I don’t usually dabble in miracle-speak, but I may erect a tiny altar to Steve Jobs in the corner of our living room. Irony: We hadn’t even considered getting Leo an iPad. They seemed awkward and fragile to me, with oversized touch screens that looked as vulnerable as a hermit crab’s exposed backside. I felt more comfortable with…
Lisa Domican www.graceapp.com There was no single thunderbolt moment when I understood my son, Liam, was not like other children. No “I knew where I was when John Lennon was shot, or Man landed on the Moon.” Instead it came over a number of weeks in one difficult summer, when little things started to add up and my husband managed to convince me that it was time to look for help. Liam was a bright, happy and alert little boy and everyone loved him. He was obviously clever; leaning out of his stroller at 18 months to look at road signs. But sometime between his second and third birthdays, my husband started asking questions. Liam wasn’t talking, he wasn’t looking at anyone, he wasn’t answering to his name — he was leading us to the cupboard to get a drink, but not asking for it. I resisted at first. Liam…
Caitlin Wray www.welcome-to-normal.com Odds are at some point in your role as your child’s advocate, you will need to write a letter to the powers that be. A masterfully crafted letter can be an incredibly powerful weapon in an advocate’s arsenal, but it’s often not an intuitive process; there are unwritten rules and unspoken expectations that need to be addressed, if you’re to achieve maximum effectiveness. I’ve spent much of my professional — and personal — life drafting letters that are designed to effect meaningful changes; it’s one of my favourite things to do (yes, I’m geeky that way). To help you find effective ways to word your own letters, here are some suggestions, along with examples from letters I’ve written as my son’s advocate: First make sure you are writing to the most useful and appropriate person. Do your research before deciding to whom you will address the letter,…
Emma Apple www.BlueHijabDay.com I could write a rather mundane thousand words about what Blue Hijab Day is and that our mission is to create widespread autism awareness in the Muslim community. I could tell you, it was just a last minute idea which took off on World Autism Awareness Day 2010. All of that would be true, honest and straight from the heart, but instead, I’m going to tell you how it really began, where it really started, how being a Muslim touched by autism compelled me to create Blue Hijab Day. I’ve always been Emma, no other boxes ever really fit. School box, fashion box, belief box, thinking box, social box, no, it was more like, the origami box with a batman sticker on the side, open at the top. I come from one of those families, the eccentric ones who don’t quite fit the mold, or would much…
Reviewed by Jennifer Minnelli, M.S., CCC-SLP Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism by Susan Walton I have finally found the book the School Psychologist was supposed to hand me when they gave us my child’s murky neurological diagnosis of Borderline Asperger’s and Sensory Processing Disorder. Susan Walton’s Coloring Outside Autism’s Lines is a must-have for anyone who finds themselves at the intersection of social inclusion and the company of actual people. It is operating instructions for parents of sensitive, quirky, and differently-abled children. With her proactive and practical suggestions for how to keep your quirky child entertained and engaged in a variety of real-life situations, Susan Walton deserves honorary degrees in Speech Pathology, Occupational Therapy, Physical Therapy, and Child Psychology. Her skillful way of supporting and encouraging grieving parents to push on and pursue family dreams makes her also one part…
Alysia K. Butler trydefyinggravity.wordpress.com We had our first snow of the season this morning. When the kids saw it out the window they were beyond excited. I went out to warm up the car and brought in a giant snowball so they could all touch it. That started the mad dash around the house for the winter stuff. Luckily I’m disorganized enough that most of our winter coats, boots, hats and gloves were still out from last winter, so they were easy to find. However, being that disorganized also means that I have no idea what fits anymore. Howie was clamoring to go outside and play in the snow. Maybe clamoring isn’t the right word. Demanding? Insisting? Perseverating? It was 8:30 AM and I realized that Howie wasn’t yet dressed for school. We need to be out the door by 8:35 to get to school on time. I pulled him…
Shawn C. Graves We’ll call him Tree — trees fascinate him. He climbs them in reality and in his dreams, fearlessly. Tree is five years old. When his mother (Mom) and I started dating, we immediately spoke of our children. I have two daughters, three and seven. Mom has two sons, five and eleven and a daughter, fourteen. We both found out quickly that we were proud parents and shared several parenting notions and ideals. She then explained to me that Tree was autistic. Of course, I have heard of autism before. But I was to soon find out I knew nothing of it. I mean it’s our nature, right? If something doesn’t directly affect us or interest us, we rarely find out more about it than what the media tells us or what mainstream society thinks about it. I honestly didn’t give the issue much thought — I was…