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…

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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…

Welcome to the Club

An Open Letter to a Friend Jess at Diary of a Mom www.adiaryofamom.wordpress.com My Dear Friend, I am so sorry for your pain. Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it. I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear. I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time. I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its…

Creating a Special Needs Binder

Jennifer Johnson As a parent of a child with both significant medical problems as well as a diagnosis of autism, I have tried to learn things and develop systems along the way to help me in terms of accessing care for my child and getting quality care.  One of the tools that I developed for myself (and then later learned was available online in other forms) is a medical/special needs binder.  I take it to all appointments for my son — the pediatrician, speech therapist, school psychologist, etc. Special Needs Binder: Why and How Whether your child has medical problems on top of ASD or not, you will unfortunately spend a lot of time in the offices of doctors, psychologists, school officials, etc. Each of them is likely to ask you many of the same questions again, and some will ask you the same things multiple times. My son has…