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…
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…
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 —…
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…
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…
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…
Transitioning to a group home Laura Shumaker www.laurashumaker.com My son 22 year old son Matthew and I were cruising our neighborhood for garage sales early one November morning, and we weren’t having a lot of luck. We needed to find furniture for the apartment that he would be moving into the following weekend. Matthew has autism, and would be part of a Supported Living arrangement that we had designed with the help of our regional department of developmental services and Camphill Communities in Soquel, California. “Supported Living Services (SLS) consist of a broad range of services to adults with developmental disabilities,” said Mary, who had been Matthew’s social worker since middle school. “With a supported living program,” Mary said, “Matthew will be able to exercise meaningful choice and control in his life, but with enough support to help him achieve his long term goals.” “How long term is “long term?”…
Lou Tecpanecatl ourlifewithdiego.blogspot.com Christmas is supposed to mean a day of relaxation and family meals. But last year, we decided to visit my parents in Ohio, and we booked a flight on Christmas Day. We knew in advance that flying with our older son, Diego, was going to be stressful because he might feel the need to get out of his seat to walk around and we were not sure how he would handle the airport crowd. We arrived well in advance of our departure in order to check our luggage and to make sure the kids had a chance to eat. Things were going relatively well until we got to the security checkpoint. I was in charge of keeping Diego from getting out of line and running somewhere else. My wife and I frantically unloaded the stroller and removed the baby’s jacket and shoes (he was six months old…
Caitlin Wray www.welcome-to-normal.com “We fear it. We fear passion, and laugh at too much love and those who love too much. And still we long to feel.” – Jeanette Winterson We long to feel. This is the irony of a child like mine who feels too much, in a world that is losing its ability to feel at all. Have you noticed that most children have an inborn passion? Even if they cannot understand or express it outwardly in typical ways. They are grounded not in thoughts or assumptions or judgments, but in feelings. And when they have those feelings, that passion, they let it fill them up completely. Because they haven’t learned Control. Control has come to represent the zenith of success in our post-modern society. Control your weight, control your behaviour, control your finances, control your future, control your children, control your self. And yet … we still…
Alysia K. Butler trydefyinggravity.wordpress.com One night two months ago I spent some time in the company of some amazing women. All mothers, all with school age kids under the age of ten, all of whom “get it.” Earlier this year, a friend and I had the idea to start a small support group, to gather mothers or fathers of kids on the spectrum. With the help of our school district, we reached out to parents to see if anyone wanted to meet, just to talk. Our first meeting was so nice that we decided to meet again. And that night two monhts ago, our group expanded. Friends brought friends who had kids on IEPs. Friends brought friends who had kids with diagnoses but couldn’t get IEPs. And as the sangria and wine and spinach dip flowed, we sat and just talked. Some of us were meeting for the first time.…