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…
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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…
Kristina Chew autism.typepad.com Prior to my son Charlie’s diagnosis of autism in July of 1999, I knew even less about special education than I did about autism. I literally didn’t know anyone — family members or friends — who had ever been in special ed. I had less than zero idea if any of the public schools I had attended back in the 1970s and 1980s in California had special ed classes. I’m sure they did; to say that I was ignorant is an understatement. Now I realize that my lack of experience and knowledge about special education back then speaks to a general attitude about special ed, a sense that it’s great that our society provides it, but best not talk to about it; that special ed is for “those kids” who don’t do well in school, or have behavior problems, and so forth. So here is a bit…
Barbara H. Boucher, OT, PhD, PT www.therextras.com My identity as an OT runs as deep as my sense of being an adult. I begin on a personal note because if you have trouble discerning a person’s face or need concrete affirmation of my being you might imagine me to have three heads: As a naive undergraduate I learned at the feet of Jean Ayers’ generation of occupational therapists. For reasons that are most easily characterized as my professional “developmental” trajectory, I became a physical therapist, also. A complete psychological profile of me might read that I received a great deal of reinforcement in an academic setting. From my Doctor of Philosophy (PhD) in Human Development and Family Sciences I claim the title of Child Development Specialist. If the words “occupational therapy” (OT) are new to you and accompanied your child’s diagnosis, you are not alone in struggling to understand what…
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…
Jordan Sadler, MS, CCC-SLP www.communicationtherapy.net When your child is diagnosed with autism, one of the first professionals you will need on your child’s team is a high quality speech-language pathologist (SLP). This is because challenges in communicating and relating are core features of the diagnosis, and improvement in this area will make a tremendous difference in a child’s — and family’s — life. For many children with autism spectrum disorders (ASD), the speech-language pathologist is the cornerstone of the therapeutic team. A speech-language pathologist may also be referred to as a “speech therapist” or the more descriptive “communication therapist.” Whatever the title, parents will want to be sure their child’s therapist is licensed by the state and certified by the American Speech-Language-Hearing Association. Furthermore, be sure to work with a practitioner who has extensive training and experience in the field of autism, and don’t be afraid to ask the therapist…