TPGA Book Update

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

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iPads: Near-Miracles for Kids With Autism

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…

Grace Needed an AAC App, So Her Mom Created One

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…

Advocacy 101: How to Write an Effective Letter

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,…

If the Scarf Fits

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…

Book Review: Coloring Outside Autism’s Lines

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…

Rainy Days and Mondays

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…

Tree

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…

Thanksgiving Table Manners

Hartley Steiner www.hartleysboys.com I hate eating with my kids. Really, I do. Our meal times usually push me to the edge of sanity. And with Thanksgiving just weeks away, I am reminded that I will be eating with my kids in a formal setting with other people. Perhaps the turkey is less nervous than I am. Why? It isn’t for the reasons you may think. I have long ago gotten past the worries about what food my kids will eat, or whether they can stay seated at the table, or their inability to be hungry at meal time, preferring to graze all day. What I haven’t gotten over is their utter lack of table manners. Yes, table manners. I hear you — you think I shouldn’t worry about table manners, that perhaps I have bigger fish to fry. But bad table manners is a pet peeve I just can’t let…

Progress

Molly Keene keenesandco.blogspot.com Today, we were working with letters. I pointed, hastily, at a “z” on its side that looked like an “n.” “Ennnn,” I said. “Ennnnnnnn.” “Eeee!” crowed Ollie. He walked over, turned the letter correctly, and said, again, “Eeee.” Well, I stood corrected. Today, he spelled walrus. Giraffe. Happy Halloween (that one freaked out my friends last week). He can’t say any of those words, but he can spell them. He knows the variations of his name, both full length and nickname, and will pull out books with each to compare the two. Today, he happily shouted letters as I gave phonetic clues. “Ah!” said I. “Ayyy!!” he replied. Today, we danced to Lady Gaga and the Glee soundtrack in the kitchen, in between therapy (with letters, today, because that’s what he wanted, and we are working on “being with”). Little Bit, in her jumperoo, laughed and bounced.…