Jennifer Minnelli, M.S., CCC-SLP www.autismsphere.com When your child first gets diagnosed with a developmental disorder, you, as a parent, are in a very vulnerable place. Regardless of your area of professional expertise, it’s almost as if you start over again, as a beginner. A beginner to parenting, and a beginner to this new world of diagnoses, specialists, medications, teacher opinions, and therapists. When we started down the road of diagnosis for my quirky oldest child, I was reluctant. It was hard for me to submit to other peoples’ opinions, when I felt I knew exactly what was going on with her and how it should be treated. Also, I felt, I knew the dark under-belly of the world of allied health professions. Several years out in my career, I had already worked in a variety of settings, from public school to inpatient hospital, and everything in between. I had worked…
When it comes to Halloween and autistic kids, parents need to be clear-headed, creative, and flexible, and prioritize our kids’ needs and stamina. So, if you’re in the market for Halloweening advice, let me dump some on your head, courtesy of personal experience, friends’ adventures, and the Internet.
Researchers from Columbia University have asked for our help in reaching out to parents on their project, which has such similar goals to The Thinking Person’s Guide to Autism. We hope that parents of children with autism who can participate, will. Thank you, -Shannon, Liz, Jen, & Emily, TPGA Editors Dear Parent, We are researchers at Columbia University’s Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child’s autism, seeking professional help and navigating the system of services. The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child’s development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents…
Corina Lynn Becker http://autisticapp.blogspot.com/ http://nostereotypeshere.blogspot.com There’s been quite a bit of news lately about how Apple’s iPad can assist Autistic children. The stories I have heard are wonderful and hopeful, on how iPads and iPods could bring about a new era of portable supports, learning, and communicative devices, and independence. It has been pointed out that the portable devices, while not cheap, are inexpensive when compared to other specialized devices — which are often too bulky to carry around and be applicable to various locations and situations. With the development of specialized apps, a child, parent, teacher or caregiver can carry a small, slim device filled with programs to communicate, understand how to go places, be prompted on doing tasks, keep organized, learn social skills, filter sensory input, and regain calm from stress. For those with motor control problems, the large screen of the iPad offers more accessibility and opportunities…
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,”…
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…
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.…
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…
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…
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…