Susan Walton www.discoveringfamilyfun.com It’s important to realize that you cannot cope with this new element of your life alone. And you shouldn’t try. There is help out there for you, for your child, and for your family, and you should take advantage of it. In addition to uncovering the services and agencies that offer assistance, you want to find and keep the friends and professionals who will sustain you. And conversely, you may need to minimize your exposure to the people, feelings, and obstacles that drag you down. First and foremost, your best allies are other parents who have a child on the spectrum. You can find existing parent networks through local support groups, parent clubs, assistance agencies, and online forums like Yahoo Groups. Joining those groups is a great way to get started. To find out if there is a Yahoo Group for parents of children with autism in…
Tag: autism
Liane Kupferberg Carter http://www.huffingtonpost.com/liane-kupferberg-carter My husband and I had grown increasingly uneasy about our second child Mickey. Though a warm, engaging baby, he showed no interest in playing Peekaboo, How Big is the Baby, or waving bye-bye. At monthly visits the pediatrician assured us all was well. But by 18 months, Mickey had only three words, which is why fourteen years ago we finally found ourselves sitting in a cubicle at a major teaching hospital. A team of unsmiling experts spent two hours poking, prodding, and measuring our son, asking him to draw a straight line, stack cubes, put pegs in boards. I perched forward to catch the doctor’s words more fully, hoping to hear how adorable, how promising my child was. Instead, she said: “Don’t expect higher education for your son.” It felt as if we were looking down an endless, dark tunnel. Our radiant little boy had just…
Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa There are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including but not limited to: health, toileting, aggressive and/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance. We’ve used a Google spreadsheet to successfully track important factors for my son Leo for the past several years. A daily record of Leo’s important variables helps track and explain underlying patterns if and when things go awry — or go well. Because we keep Leo’s record online as a Google docs spreadsheet, it can be shared with his entire school and home program team, as well as with interested family and friends. Once a behavioral record has been set up, it takes only a few minutes each day to fill it out. An online behavioral record spreadsheet has been an invaluable tool…
KAL autismtwins.blogspot.com I clutch John’s hand as we enter his brother’s school. We are here to pick up Sam after week two of an after-school soccer program, a program I thought would be great after hearing that a few of his classmates were enrolled. In the five minutes it takes to find the gym, no fewer than three teachers greet us, see John, and say “Hi Sam!” Their faces look puzzled and I watch them trying to sort it out: Sam has a twin? Why didn’t we know Sam has a twin? We find the gym and look inside. Eight or so boys running between two nets, a coach yelling encouragement. There are just a few minutes left and more parents are filing in behind us. John takes in the open expanse, the rolling ball, and yanks me inside. Before I can get a good grip, he darts free. At…
Caitlin Wray www.welcome-to-normal.com I have a neighbour who can’t say “autism.” Both of us having two young kids, we had a casual chat on the lawn the other day as neighbours often do, about the usual stuff. Except of course, the “usual stuff” for parents like us will strike others as highly unusual. It’s hard to make small talk about our kids without autism finding its way into the conversation. It used to make me uncomfortable; it can be awkward to find succinct ways to weave such a complex situation into an informal chat. But I no longer let society’s discomfort with autism deter me from talking about “it,” because “it” is part of who my son is, and indeed has become part of who I am. If my neighbour gets to talk about her daughter’s ballet class, then damn it all, I get to talk about my son’s karate…
Emily Willingham daisymayfattypants.blogspot.com What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups. 1. From total strangers — and my mentions of autism in this context are rare — the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response. 2. From casual acquaintances, such as parents of other children and periodically from others closer to…
J. Lorraine Martin cheeselesspizza.blogspot.com It was a typical, suburban day at my local grocery store. Besides loading up on Mad Housewife wine, I had other highly important plans: channeling the wisdom of Pavlov on aisle 12 as I held up a bag of Skittles — think mad housewife becomes mad scientist. What can I say? An autism mom often reaches new heights (or is it lows?) to help her child step outside of his self-imposed postage stamp zone of perceived safety. In case conducting Pavlov experiments isn’t in your shopping repertoire, allow me to explain. You see, my oldest son, at the age of nine, developed some intense fears at our local grocery store. Despite uneventful years of happy grocery shopping experiences up until that time, he one day became dramatically frightened over the thunder sound in produce when the water sprayers came on; not much later the mooing cow…
Dr. Rob Lamberts distractible.org I’ve been practicing for sixteen years now, doing both internal medicine and pediatrics. One of the joys of that is watching kids under my care grow up and not having to give up their care just because they get older. The spectrum is wide, with some kids growing up in “normal” families with “normal lives,” others in “abnormal” families, and yet others with inherently “abnormal” lives due to illness or disability. But the kids aren’t the only thing that has changed over the past sixteen years, their doctor has changed as well. My comfort zones have widened, not getting rattled by “abnormal” as I once did. I used to feel uncomfortable with the mentally and emotionally disabled, now I am not. I used to feel sorry for parents with “abnormal” children. I used to feel bad for kids who were “abnormal;” I still do now, but…
Judy Endow, MSW www.asperger.net www.makinglemonadestore.com Meltdown behavior is quite common for those with Autism Spectrum Disorders. And, indeed, the most frequently asked question by parents and educators is: “What do I do when my child has meltdowns?” When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain, especially the child. Stages of Explosive Behavior So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Endow, 2009), explosive behavior is defined as having four distinct stages, followed by a clearly defined recovery period. In addition, the physiological fight/flight mechanism is triggered immediately prior to the explosion. In this model, the four stages…
Kristin Neff Ph. D. www.self-compassion.org www.horseboymovie.com My field of study is self-compassion, it’s what I do all my research on, and I’m writing a book. One of the things that this practice has given me is that I’m really okay with being my honest, authentic self. It’s not that I like people judging me. It was kind of hurtful, some people really went after us because of the [Horse Boy] movie, they said that we made it all up, that we’re in it for the money, and people who didn’t know me were making all these assumptions about my character. It was really strange; I never thought I’d be in that position. But in terms of the stuff that is true about me, I’m really okay with it. I’m also okay with admitting my flaws and my shortcomings, and that it’s okay to be imperfect. In my book [on self-compassion],…