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…
Tag: parenting
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…
Kristina Chew autism.typepad.com My son Charlie has been in both public and private placements. He is 13 years old now; he started attending school — a special education preschool classroom in the St. Paul Public School District — when he was just around 2 years old. Looking back, he’s been through most every kind of placement, from special education classrooms located in a public elementary or middle school, to a small private school only for autistic children, to a large public center for some 200 children with autism and other disabilities. Again and again, we have found ourselves looking for a school for Charlie. Too often, we have thought we have found “it” — a school, a school district where the right program and supports and staff seem to be in place, and then things started to seem not so good, and then to fall apart. At no point have…
Liane Kupferberg Carter http://www.huffingtonpost.com/liane-kupferberg-carter Though this essay references legislation and congressional matters specific to New York State, the entire autism community could benefit from improved insurance coverage. -Eds “Your child has autism.” It’s a devastating diagnosis for a parent to hear. But it’s a one-two punch when your insurance company then refuses to cover the critical, medically necessary therapies your child desperately needs. When our then-2-year-old son was diagnosed with a developmental disability 16 years ago, a team of medical experts prescribed a rigorous program of therapies. However, state-funded early intervention services were only able to offer us an hour and a half a week of speech therapy — for a child who wasn’t talking. We found private therapists to work with our child. But when we tried to file an insurance claim, the insurance company turned us down flat. “We don’t cover educational treatment,” they told us. We appealed.…
Carol Ann Greenburg Brooklyn Special Needs Consulting, www.bklynsnc.com Sometimes I feel like getting services for my autistic son is like trying to dine at the world’s worst restaurant. You can’t afford the best eatery in the city, who could? You’re still really hungry so you walk into some local dive and the wait staff, whose entire job it is to feed you, is standing around staring blankly at the many obvious health-code violations. They’re clearly offended by the interruption when you ask for a menu. You’re the one who is hungry after all, why can’t you come in knowing what you plan to eat? Finally someone ambles over with a menu, drops it on your table like they’re doing you a favor, and you realize there’s nothing even remotely edible on it. Specials, Substitutions? Forget about it! After you wait an unholy amount of time, someone brings you the wrong…
Devon Koren Asdell community.advanceweb.com/blogs/ot_9/default.aspx Eleven years ago, as I lounged in my mother’s apartment at the tender age of twenty, overwhelmed by the heat of the summer combined with my final trimester of pregnancy, I finally settled on a name for the creature who kept poking her tiny feet into my ribcage, the creature who was poised at any moment to completely and irrevocably change my life. I decided on a name derived from the Irish language — “Aisling,” which meant “Dream,” and “Stoirm,” which meant “Storm.” A Dream Storm. At that moment, I had no idea how completely that name would end up describing my beautiful, blond-haired daughter, who would spend much of her time lost in the dreams inside her head, and who would also grow to rage against the confusing world around her. I did not realize that the child in my womb would be diagnosed…
Susan Senator www.susansenator.com When Benj was a very little guy, he used to sit on my lap at the beach, holding on tight to some little palm-sized truck or being. He did not like to move from there. I was his base. He took a long time to get himself into the sand, and even longer to play in the waves the way he does now. It worried me, of course. All the other little kids were sitting on their fat, puffed-up diapers and digging, crying, yelling, laughing, pointing. Benj could do all of it; he just had to do it from my lap. I tried pushing him off, prying him loose, setting him down, showing him how to play, but generally, he preferred my cushiony self. Sweet Baby. But oh, God, was I worried. He wasn’t like Nat, but he wasn’t like Max. So what was he? He was…
Mir Kamin Woulda Coulda Shoulda (wouldashoulda.com) For the first time in a very long time, it felt like things were okay. Good, even. Things were going to be great, in fact, and once I got the kids settled in to our new town, new house, new life … things would only get better. So there I was in the office of the one and only psychiatrist in town our new health insurance would pay for, who would also see children younger than twelve. My son was only seven, but for the past year he’d done well on an anti-depressant to help control his anxiety. I’d had reservations about medicating him — of course I did — but it helped. It helped a lot, actually. All I needed from this doctor was a new prescription for the medication that we already knew was working fine. I’d brought his medical records and…