The Inclusion Dance

Susan Etlinger www.familyroomblog.com It’s official: I’m a bitch. By which I mean I’ve moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now — inevitably — relentlessness. And it is relentless — for reasons bureaucratic, cultural, personal, possibly gender-determined and sometimes inexplicable. The day starts with a clamor of children in the big yard. It’s an expansive space — too much for the Kindergartners, much less any child with sensory issues — and children whiz around, hollering, bumping into each other, a chaotic, moving mass of kidness. Isaac refuses to set foot in the yard. This full frontal assault first thing in the morning is unbearable. He makes a beeline for the library, and insists we sit and read a book. He falls apart when I tell him it’s time to go to the classroom. “Nooooo,”…

hollyrobinsonpeete_ryanpeete_rjpeete-2970965

Shifting Focus: Eight Facts About Autism the Media Is Not Covering

Holly Robinson Peete www.hollyrod.org Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy’s phone call shortly after her son’s diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for seven years already.  We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I’d be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she’d help spread autism awareness like…

We Fight the Fights That are Worth Fighting

Elise, A.K.A. aspergers2mom asd2mom.blogspot.com  Fifteen years ago, my oldest son was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). At the time, we had no idea what kind of future he would have — if he would have at a future at all. Autism was not even a word on anyone’s lips at the time; no one was talking about it and no one was even acknowledging the epidemic that it was becoming. Luckily, I had a cousin whose son had been diagnosed years earlier and I called him for some advice. The best thing that he ever said to me and what I pass on to others is: Do not project the future for your child. Take each day, each moment if necessary, and do what needs to be done at that time. Then one day you will look back and see how far your child has come.…

The Child Can’t Spell

Elaine Park My son can’t spell. At all. I like to joke about it, because in my culture (Anglo-Canadian) making wry, self deprecating comments is how you get through things while keeping your dignity intact. For example, my favorite line is “My son spells phonetically. I’m just not sure what language it is. Maybe, Latvian? Estonian?” But it’s true. The child cannot spell. He attends a pretty good public school and participates in a program designed to include children with Asperger’s syndrome into the general education stream. He’s in seventh grade, and after six years of me whining at six years of IEP meetings that the child cannot spell, the child cannot spell. Solutions are presented and possibly applied. While the people who work in the program are great when it comes to dealing with behavior and social skills, they are not so impressive at follow through on things like…

hardworkingman001-1618249

For the 85% of Us Who Can’t Work

Clay http://cometscorner-clay.blogspot.com I can’t say I’m surprised to learn that most autistics have a great deal of difficulty getting, and maintaining a job for more than six months. I believe it, because I know just how hard it has been for me. I saddled myself with a wife and two kids before I even got out of the Navy, and for quite a while, the subject of my wife getting a job wasn’t even discussed, because our generation wasn’t much into that. Instead, I took whatever job I could get, starting as a low paid parts clerk, until I accepted my stepfather’s offer of helping me get a job at an iron ore mine, (which paid much more). After I recovered from a huge accident, I returned and worked there for another three years. They gave me some hard and nasty jobs for awhile, such as wrestling with 55 gallon…

Why My Child With Autism Is Fully Vaccinated

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa Do you still wonder if there’s a link between vaccines and autism? Then ask yourself: have you or would you ever let your child travel by airplane? If your answer is “yes,” then you should re-examine any concerns about vaccinating your children. Flying and vaccination both carry risks, but those risks are statistically unlikely to affect your family. You should also know that Andrew Wakefield, the researcher who launched the autism-vaccine panic via a 1998 press conference, had his related research formally retracted and his medical license taken away. You should know that the mainstream media, after years of “considering both sides,” now yawns when yet another study fails to find a link between vaccines and autism — and that gossip sites like HollywoodLife.com want to know why anti-vaccination activist Jenny McCarthy won’t publicly end her campaign against children’s health. You should consider…

The First Rule of Autism Club

Amy Greatbanks www.ishouldhavecalledhimcalvin.wordpress.com  If you have seen the film Fight Club, then you most likely know that the first rule of Fight Club is “we don’t talk about Fight Club.” When we got hit between the eyes with the diagnosis of autism spectrum disorder for our son in December 2007, we had no idea we were joining such a large club. The sensation of knowing for certain that my heart-achingly precious, adorable, vulnerable child had autism was soul-crushing. And all I wanted to do was say it out loud. If we don’t give voice to this condition, we do the ones we love the most a great disservice. So many people with autism don’t have a voice of their own. That is why I vowed that my first rule of autism club was that we do talk about autism club. Almost every day I speak to someone about my child…

Advertising for Autism

Dr. Claire Hughes-Lynch www.professormother.com The Wyndham Hotel in Austin, TX recently started to offer “autism-friendly” rooms with sensory activities and an alarm on the door that will alert you when the door is opened. Colgate is sponsoring a Dental Tool Kit for children with autism. Dealing with a child’s Asperger’s is a main plot theme in the show Parenthood on NBC, the movie Adam and many, many other more main-stream media. Regal Cinemas offers “autism-friendly” movie showings in which it is OK to make noises, cry and wander around. Discovery Toys just started marketing a line of toys designed for children with autism. And of course, there are the various foods, technology and products specifically designed to educate, cure, support, and raise awareness of autism I think we’ve just reached the tipping point of autism being used as a marketing tool to reach families. As Kristina Chew said, back in…

Looking Back, Looking Forward: What’s Next for The Thinking Person’s Guide to Autism

The Thinking Person’s Guide to Autism (TPGA) started with a brainstorm in a California parking lot May 27, 2010. We published our first post 9 days later, on June 6: The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed. We want to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy. Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families. Our attitude is cautionary yet loving — we’re honest, but we’re not interested in negativity. We — the TPGA editors —…

Why I Can’t Breathe Tonight

Anonymous Special Needs Professional Recently I read a post on The Thinking Person’s Guide to Autism blog by a parent named Pia Prenevost. It was called An Open Letter to Special Needs Professionals. The title made me feel a bit guarded at first (as a special needs professional), because my experience with Ye Olde Internets is that “an open letter” usually warns that a negative letter, a warning to the recipient of the “Oh, no, you di’n’t” variety, is coming. But that was incorrect, because in reality the author had written a lovely, heartfelt post about the vulnerability a parent of a child with special needs feels. I encourage you to read it, it’s beautiful. Here’s an excerpt: “I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if…