tag:blogger.com,1999:blog-6667117153327771492024-03-13T14:14:37.067-05:00Autism Co-ParentThe thoughts and opinions of a divorced mom making a life with her two boys - one who has autism, the other who is a good big brother to him.BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-666711715332777149.post-470324161499267502010-06-06T16:59:00.003-05:002010-06-06T17:03:37.309-05:00My goodreads review of "House Rules" by Jodi Picoult<a href="http://www.goodreads.com/book/show/6614960-house-rules" style="float: left; padding-right: 20px;"><img alt="House Rules" src="http://photo.goodreads.com/books/1262532855m/6614960.jpg" border="0" /></a> <a href="http://www.goodreads.com/book/show/6614960-house-rules">House Rules</a> by <a href="http://www.goodreads.com/author/show/7128.Jodi_Picoult">Jodi Picoult</a><br /><br /><br />My rating: <a href="http://www.goodreads.com/review/show/105241988">3 of 5 stars</a><br />I'm not a Picoult fan (why, oh why, does she need to use separate fonts for each of her characters?), but my local librarian asked me to read this and tell if Picoult "got autism/Asperger's right." I didn't need the vaccine/autism lecture on pages 46-47 and I worry that the uninitiated reading this are going to make all sorts of assumptions about the faulty science behind it and assume it's a given fact that vaccines cause autism. I suppose Picoult intended it as narrative by the mother character, but it read like a sidebar. She mostly gets Asperger's right, except for a few spots where her Jacob character seems to "snap out of" his autism long enough for a soliloquy. Also, was I supposed to be surprised, or was I supposed to have figured it out by the middle of the book, as I did?<br /><br /><a href="http://www.goodreads.com/review/list/2002852-julieb">View all my reviews >></a>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-76623540241464236472009-08-21T08:02:00.004-05:002009-09-07T07:36:02.747-05:00Learning to Ride Just Like Everyone Else<span style="font-size:85%;"><span style="font-family:verdana;">Everyone should know how to ride a bike, right? For some children and adults with disabilities, it can be a tricky thing to learn. It takes good balance, confidence, and coordination. My son, Colin (age 12), gained all that this summer by participating in the week-long Lose The Training Wheels program at Union Grove Elementary. The national program was brought to this area by the Autism Society of Southeastern Wisconsin and the Down Syndrome Association of WI. It uses special equipment to modify real bikes so that the rider can ease into two wheels gradually. </span><br /><br /><span style="font-family:verdana;">I work for the Autism Society and also volunteered to help "spot" several of the other riders. Both Colin and I came out at the end of the week glowing! Colin could ride! He's so proud of himself and he has a "need for speed," so he loves his new-found freedom of zipping around on a bike. I was touched by the participants I worked with. One was a young woman, fifteen years old, and mostly non-verbal. By the third day she was riding a bike for the first time in her life and we all knew she was happy when she broke out in song as she went around the parking lot. I couldn't help but join her in a few verses of "Michael, Row The Boat Ashore!" </span><br /><br /><span style="font-family:verdana;">I'll carry the memories with me always of the other kids and parents, the wonderful volunteers, sponsors and staff, and Colin will continue to glow with pride as he rides his bike, just like any kid his age knows how to do!</span></span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-23450394281612008752009-01-25T08:56:00.001-06:002009-01-25T08:58:20.424-06:00My Autism Awareness bumper sticker no longer defines me.I removed the Autism Awareness bumper magnet from my car today. I took it off for the car wash, as usual, because I’ve lost them that way. This time, though, I didn’t put it back on. <br /><br />A friend asked me recently if my life isn’t sometimes “all autism, all the time,” and if that doesn’t get to be too much. I had to admit, a lot of times, it does. I know it’s been too much for my older son. Being the brother of a kid with autism has been a major theme of his life. I do love my work, which involves giving referrals, information, guidance, and advice to parents, teachers, other professionals, and sometimes adults on the Spectrum. It’s purposeful and rewarding. But then I go home to autism.<br /><br />At one time I needed the bumper sticker; and the t-shirt and the jewelry. I hoped these things would offer a shorthand to explain my “bad parenting” to insulting strangers. Certainly, people ought to be aware of autism and how profoundly it affects so many people’s lives. <br /><br />But can a bumper sticker really do all that? <br /><br />We are all so much more than a bumper sticker. My son is who he is: wonderfully and perfectly and happily, Colin. I suspect that without the autism he’d still be a handful – defiant, busy, active, sassy, and a challenge to the most patient parenting skills. There are places we still can’t easily and comfortably go and things we can’t do that other people get to do all the time. But want to stop fighting it, stop being angry and feeling gypped. I’m learning to accept, to be content. I’ve decided it’s unhealthy for both my children to be raised to think in such restricted terms about life – theirs or mine. There is so much we can be and do.<br /><br />At the same time, autism has given me a purpose. It’s given me a job that I find satisfaction from after two decades of wondering what the hell work was for, other than earning money to get away from work. Autism was the catalyst that gave me something, finally, that I felt strongly enough about to get me writing, something that I finally felt I had something to say about that might be of value.<br /><br />So while I intend to no longer allow it to define my son, define my life, I thank God for the opportunity to live my life a different way, to slow down, to enjoy, to be content, and aim to provide the same for my children and the people I talk to who might feel freer doing the same.BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com1tag:blogger.com,1999:blog-666711715332777149.post-47004906599844441722009-01-01T19:30:00.001-06:002009-01-01T19:31:47.495-06:00Acceptance is not giving up.Parents who are focused on curing their children of autism will continue to hear "acceptance" as "giving up.” I’m realistic: these things take time. The proven cause and cure will not come during my son’s childhood, and probably not his lifetime. Curing or “recovering” him with special diets, supplements, and dangerous treatments such as chelation or hyperbaric are pipe dreams. People do these things, see improvements that would have happened anyway, and think one has to do with the other. <br /><br />I put my energy on improving his quality of life instead of chasing pipe dreams and to love my son for what he is. How is that “giving up?” <br /><br />Family members who saw my son over the holidays after not seeing him for a year were AMAZED at his gains. He's calmer, his speech is much more interactive, and he comes up with original thoughts. What did we do different this past year? We did NOTHING, except to take him off the anti-anxiety and mood-stabilizing medications. He was taken off for reasons having to do with coordinating and agreeing with my ex-spouse and his household, but I had suspected the meds were not helping, anyway. The appointments and the side effects were sure a major source of stress I’m now happy to live without.<br /><br />At one time I was sure the meds were making a big difference. If I'd had him on the Gluten-Free diet and saw the gains we saw this summer I would have probably been convinced THAT was working. (Yes, we've tried it -- and saw no results). If we'd been in denial enough to subject him to hyperbaric I might right now be extolling the virtues of that. And so on.<br /><br />I know parents who throw everything but the kitchen sink at their kid and tell parents of newly diagnosed kids that if they aren't doing the same, they're bad parents. They use heroic phrases like "never give up!" and "do all you can!" to justify their cruelty. It’s a new twist on the one-upmanship parents have been doing since someone’s Junior Caveman grunted at an earlier age than someone else’s precious little Morg III.<br /><br />WHO REALLY is all that trumpeting and cheerleading for? Are these so-called “Autism Warrior Mothers” really doing all this crazy stuff for their children’s benefit? If they loved their children so much, why do they so desperately want to change them?BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com2tag:blogger.com,1999:blog-666711715332777149.post-54670622861658326692008-12-25T12:58:00.032-06:002008-12-25T16:41:58.364-06:00A Beautiful Spirit Having an Autistic ExperienceIt's been said that we aren't "human beings having a spiritual experience but spiritual beings having a human experience." That would explain why some people have a more spiritual life; they find it easier to tap into the spiritual being inside their body. It would also explain why so many of us don't tap in until something radical happens in our human experience - a death, an illness, a loss - to really shake up our perception of what matters. With these human experiences comes the realization that it can all be gone in an instant, and what are we left with, if not the spirit?<br /><br />What happens, then, with people who aren't "spiritual?" Instead of being a human being who either doesn't believe in all that "stuff" or who just doesn't choose to tap into that side of life, perhaps it's that some spiritual beings are struggling with human shells that won't let them push through. <br /><br />So if we are spiritual beings having a human experience, what's that mean for people who have autism? Are they spiritual beings having autistic human experiences? <br /><br />People sometimes point out to me that my son, Colin, is so joyful, so cheerful, so full of life, light, and spirit. I didn't always see it. I've battled so many times to get him to do what I wanted him to do, like get dressed and out the door, or to stop him from doing something that brought him joy but either scared the bejeebers out of me or made a mess, like waking up in the middle of the night to climb the cupboards to eat Ovaltine with a spoon. Where was my joy in wiping down the walls or hunting him down after an escape? The joy was all his.<br /><br />Colin's spirit enjoys life. It loves movement. It loves smelling the world and the people in it. It loves noise - hearing it and making it. It's the people around Colin who have a problem, not him. <br /><br />The day that I started to see through the wiggly, wiry little autistic human body and see Colin's spirit was one of the best days of my life. It was freeing for my spirit. I finally understood what my mother meant when her friends asked her if Colin would be "okay" and she'd reply, "of course Colin will be okay! He's Colin!" <br /><br />Colin isn't miserable, but I was making myself miserable worrying about him. I see other kids, some with autism, others with other diagnoses, in bodies that distract the world around them from seeing their beautiful spirits. Not one of those kids ever looked miserable to me, except when they couldn't get the rest of us to understand.<br /><br />That's where I think the cure movement is getting it wrong. Are they really doing it for the "afflicted" or for themselves? Talk to any high-functioning adult - Temple Grandin comes to mind immediately - who used to be more "autistic" as a child. Read the words of a non-verbal person with autism, such as Sarah Stup. These people want to be accepted for their uniqueness, for their spirit within, and not judged by what they look like or act like in their human bodies. They want us to see them, not cure them.<br /><br />Doesn't it seem we humans eradicate or cure one human disease or disorder, only to have another take its place? Maybe we're not meant to fix this human body. Maybe our frailty, our mortality IS the point, and God's way of telling us that it's not the human body - the human experience - that He wants us to live for. Instead, the joy and the light and the life all can be found if you look past it and into the human spirit. <br /><br />*Quote by French philosopher Pierre Teilhard de Chardin.BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-85561784848075110362008-10-13T19:48:00.005-05:002008-10-13T20:32:25.835-05:00No longer "consumed"It's time to rename this Blog. When I first started writing it, I named it "Consumed By Autism." I have no idea why I chose to call my Blog that - maybe I just thought it sounded cool - but it closely reflected how I felt at that time. "Overwhelmed By Autism" would have been even more accurate of my state of mind up until this year. "Overwhelmed By Everything" would have nailed it, actually.<br /><br />This past year I have come to the realization that all the stuff that has happened to me in my life had to happen to bring me where I am today, and that all the things that I consider the "worst" events in my life were, in fact, among the best things to happen to me. My divorce freed me. It sounds trite, but it's true. <br /><br />More significantly, having a son with autism has taught me to have more patience, to see joy and beauty where it might not be immediately apparent, and to live in the moment rather than being in a constant state of panic over the future or being in a constant state of anger over what could have or should have been. When I imagine having two "typical" sons today, I know that I would still be stuck in an unhappy life, worrying about inconsequential crap, driven by having money and lots of stuff and stuck in some job or other I hate and receive no satisfaction from. You could ask me, "but what about even BEFORE that? What if you'd married someone else and had different kids? Maybe then you wouldn't have gone through any it and your life would have been easier, better."<br /><br />Who knows what could have been? Why drive myself crazy even trying to go back, unravel my life, figure out where I "went wrong" and wonder what could have been done "right?" That's for the movies. I believe I needed all of it. I've noticed a lot lately people all around me who are unsatisfied. They have perfectly "normal" children, well-paying jobs with great benefits, seemingly happy marriages, cool stuff, and they still find stuff to bitch about. Without the life I've had, without having my son the way he is, I'd be one of those people. It is said that it's better to learn from other's mistakes rather than one's own, but does anyone really learn that way - REALLY, TRULY learn? <br /><br />I've renamed this Blog "Autism Co-Parent." It's probably not the best title, either, but I'd like to be useful to someone and what do I have to offer? I have my experiences. My perspective. I've looked, and I haven't seen anything out there about parenting a child with autism cooperatively with an ex, so that's where I'm going to go with this Blog. I don't have all the answers, of course, but maybe, just maybe, someone COULD learn from MY mistakes.BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-24508001834322027932008-09-25T08:35:00.001-05:002008-09-25T08:37:42.020-05:00Jenny McCarthy has another book to sell.Jenny McCarthy has another book to sell. Yesterday, she plugged “Mother Warriors” on Oprah’s TV show and on an evening webcast on Oprah.com. I haven’t checked the listings, but be assured that Larry King Live is next on the schedule.<br /><br />One of her main messages was that mothers should not take the diagnosis and their child home and give up to despair and do nothing, but should become a “warrior” for their child and do anything it takes to “fix their kid.”<br /><br />It would seem that moms with kids diagnosed with autism would hardly need reminding that they have to do everything in their power to help their children, but then there’s Joan, who wrote not too long ago to Lisa Jo Rudy at the About.com Autism site that she felt her autistic child was “a waste of human life” and that “God ruined him.” Before having her child, Joan prayed to God for kids with “no mental or social problems.” Joan needs to do whatever it takes to stop feeling sorry for herself and start taking care of the child she has, not the one she thought she’d custom-ordered. Joan probably needs a dose of Jenny’s get-off-your-butt prescription.<br /><br />But there’s still something about Jenny’s message that greatly disturbs me: she seems to be telling mothers to try EVERYTHING and ANYTHING in the pursuit of “fixing their kids.” That can lead to dangerous and at the very least, crushingly expensive, desperate measures. She claims her kid, Evan, is “recovered.” Even though she will cop to having provided him with every possible therapy such as OT, PT, speech, and Behavior Modification, she’s convinced that the GFCF diet and supplements that did the trick. Her advice to others who have tried it and saw no results? Move on to the next thing! What next thing, Jenny? Chances are, anyone doing the diet is also already doing the OT, Speech, PT, ABA, etcetera. What’s left after that is the scary stuff, like chelation, hyperbaric, and exorcism.<br /><br />That’s where Jenny really loses me. It’s all fine and good to tell mothers to fight for their children, but what about those fragile, vulnerable people who think just because she’s on TV and she says her kid has autism and that he’s supposedly recovered, that makes her an expert? Those moms need to remember this: Jenny McCarthy pays for all HER kid’s treatments and therapies by selling books.BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com2tag:blogger.com,1999:blog-666711715332777149.post-86788570862932094662008-09-12T08:09:00.010-05:002008-09-14T18:49:50.292-05:00Live now<span style="font-family:verdana;">I've been thinking a lot about "living in the now" after having read a few books about the subject. It makes a lot of sense to me to enjoy now, because it's the only time I can do anything about, really. We think we can do something about the future, but really what we're really doing is stuff NOW that MAY affect the future. We're not really IN the future, affecting it.<br /></span><br /><br /><span style="font-family:verdana;">So, it makes no sense to freak out about the future. I can plan. Planning is good, but worrying never solved anything. This simple idea has changed my life. The very idea that there's a difference between planning and worrying was revolutionary to me when I first heard it. I suspect it's the same for most people.</span><br /><span style="font-family:verdana;"><br />I was once the Queen of what I call "extrapolating." I'd have a conversation - okay, argument - about money with my ex, for instance. I'd take that "conversation" and start worrying about the day my son with autism, now 11, turns 21 and is no longer in public school but will probably still need to be watched constantly, I'll no longer get child support from my ex, so I'll need more income to replace that money which I won't be able to do because if I get a full-time job, who's going to watch my son? And then there's health insurance. If I can't work fulltime, how will I get health insurance I can afford, because I'll be getting older and more of a risk, and what if I got sick, what if my ex got sick, what if neither of us could take care of my son any longer....ack! These thoughts all became a jumble of pure panic, and the scenarios I imagined for ten years into the future became more and more dire. </span><br /><span style="font-family:verdana;"></span><br /><span style="font-family:verdana;">One day, I was "extrapolating" on the phone to my sister. She must have gotten fed up, because she interrupted me at some point and said, "Julie, you're thinking up all the BAD things that could happen. MAYBE some GOOD things will happen, too." It's crazy, literally, how that never occurred to me. I decided then and there to stop extrapolating - just STOP. It hasn't always been easy, but I'm getting better at it all the time. It's changed my life. It's changed the way I think about my son and our life, our future. Our Now.<br /><br />I'm thinking of taking up "extrapolating" again, but with good things. Only with good things.</span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-44578572548431112352008-09-07T18:10:00.001-05:002008-09-07T18:20:18.840-05:00"Colin's Fans" Dylan's Run 208<a href="http://2.bp.blogspot.com/_6O3YR321jRc/SMRfviUlsyI/AAAAAAAAABA/aF447XMff2o/s1600-h/Colin%27sFansminusHoffmans.JPG"><img id="BLOGGER_PHOTO_ID_5243421136437752610" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://2.bp.blogspot.com/_6O3YR321jRc/SMRfviUlsyI/AAAAAAAAABA/aF447XMff2o/s320/Colin%27sFansminusHoffmans.JPG" border="0" /></a><br /><div></div>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-9255728111097980422008-09-07T17:59:00.002-05:002008-09-07T18:10:32.066-05:00"Colin's Fans" have a great day walking<span style="font-family:verdana;">Thanks, Friends and Family that participated in the September 7, 2008 Dylan's Run/Walk for Autism to raise money for research, support the Autism Society of Southeastern Wisconsin and to raise awareness! The event had record participation (over 2500 people!) and we are hoping when the countin's done that record funds were raised as well. Our team was called "Colin's Fans" after my son, Colin, who is eleven. The team's name is a play on words: we all are, of course, fans of Colin, and Colin is fond of fans and all other things that go "whir."<br />I love you all for your support!</span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-67033335863944676122008-08-14T09:55:00.008-05:002008-08-22T17:58:39.684-05:00The Frenetic Autism Mom<span style="font-family:verdana;"><span style="font-size:85%;">I've been doing some reading lately that has helped my little family a great deal as we work to manage life with autism and all it's challenges. The funny thing is, the book has absolutely nothing to do with autism. What have I been reading? At the risk of sounding all "new-agey " or like one of Oprah's lemmings, I'll confess that I've been reading Eckhart Tolle's " A New Earth: Awakening to Your Life's Purpose." Oprah has introduced it to the world as part of her famous book club, and has co-hosted webcast and Internet classes with the author, connecting readers of the book all over the world.</span></span><br /><br /><span style="font-family:Verdana;font-size:85%;">The author talks a lot about a concept that opened my eyes: "Ego." We've all heard the term "Ego," right? Remember Psych 101? Eckhart's book really delves into Ego and how it keeps us from living the life we should, the life we want. I won't go into the whole thing here - you can read the book for yourself - but basically the Ego is that "story" you're going around telling yourself about Who You Are. You identify yourself by your job title, you identify yourself by your position in a family, you identify yourself perhaps by a disability your body has.<br /><br />Another author, who has written some very simliarly helpful stuff, Wayne Dyer, calls EGO "Edging God Out." Both authors consider the Ego very limiting. You and I are MORE than what we do. We are part of a entity infinitely greater and deeper than what we see on the surface, and it's very limiting to see ourselves only as what are bodies are and what we go around doing in these bodies. Dyer says that identifying ourselves this way is, in essence, disrespectful of God's plan and purpose for us. </span><br /><br /><span style="font-family:Verdana;font-size:85%;">Have I lost you yet? What does this have to do with autism? After reading about the Ego, it occurred to me that I, and a lot of other parents (particularly mothers) of children with autism, identify ourselves almost solely in relation to autism. We've become lost in the EGO of being this person who has had this situation thrust upon us. It's become everything to us. I'm calling it "Frenetic Autism Mom." I don't think it's a good thing. It certainly hasn't been a good thing for me and my family over the years.<br /><br />Frenetic Autism Mom is the Warrior in the War on Autism. Frenetic Autism Mom is the Long-suffering Martyr Who Must Endure, or the Hero Who Will Cure Her Kiddo. Nobody else fully or appreciates or understands all that Frenetic Autism Mom does and has to go through in the course of a day.<br /><br />So what's wrong with that? It's nerve-wracking, for one thing. I believe my son strongly feels the mood around him, and having a frantic, nervous, frenetic mom made him a nervous wreck, too.<br /><br />Also, who WAS I before I became this person? Who would I be if it all suddenly went away? I'm thinking a lot of Frenetic Autism Moms would be at a complete loss of who they are if autism were suddenly erradicated. Is it REALLY all about their child, or is it about THEM? I believe it's something a lot of people really need to take an honest look at in themselves.<br /><br />Since reading Tolle's book I'm working really hard at kicking Frenetic Autism Mom out of my head. She's caused us more harm than good. My son is MORE than his autism. Seeing him as "My Son With Autism" or "My Autistic Son" has colored too much of our existence for too long. Since working to see us as MORE than a Family With Autism, my son's negative behaviors have nearly disappeared. It's amazing how much better an attitude of RELAX, ACCEPT, AND ENJOY -an attitude Frenetic Autism Mom never allowed herself to have - works than psychotropics ever did.<br /><br />Autism no longer "consumes" me (see the name of this Blog), and we are better off for it.<br /></span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-34421898396093265672008-05-18T08:54:00.005-05:002008-08-14T09:52:30.361-05:00Autism Headlines Cure The Truth<strong>Doctors make advances against autism</strong><br /><br /><br />Yippee! According to this headline in the Daily News out of New York, our troubles are over!<br /><br />Except that the headline is crap. The article goes on to talk about early diagnosis and early intervention - same ole same old. There is absolutely nothing about any so-called "advances." <br /><br />Parents of children with autism find these types of headlines frustrating. This headline gives the impression that medical science is well on its way to solving the autism "puzzle." From the extensive reading I've done, and continue to do daily, I can tell you that's far from the truth. In fact, I believe we are at least one generation, probably more, from definitely figuring out what causes autism. I'd truly love to be wrong, but, unfortunately, I don't think I am. In the meantime, a headline like this allows the general public to put autism to the back of their minds, safe in the knowledge that "somethings being done" to help those affected.<br /><div> </div><br />This generation is going to grow up and the puzzle for parents and society to solve is how to take care of all those adults who can't take care of themselves.<br /><br /><br />C'mon, doctors, please make some REAL advances! Journalists, stop selling newspapers with headlines full of crap!BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-53383235286587846372008-04-08T13:02:00.005-05:002008-04-08T14:00:14.909-05:00The Five Stages of the Autism ParentIf you weren't raised by wolves, you've probably heard of Elizabeth <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Kubler</span>-<span class="blsp-spelling-error" id="SPELLING_ERROR_1">Ross's</span> ground-breaking model of the five stages of grief. Here's the list:<br /><br />1) Denial<br />2) Anger<br />3) Bargaining<br />4) Depression<br />5) Acceptance<br /><br />People associate the theory with death, and <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Kubler</span>-Ross did include death, but she also applied it to any catastrophic personal event in a person's life, such as divorce and job loss.<br /><br />As a parent, receiving a diagnosis of autism for your child can certainly be considered "catastrophic." Don't misunderstand me, because there will be someone out there who does! I'm not saying the child is a catastrophe! I'm saying getting the diagnosis is! It changes everything.<br /><br />Most people understand the stages as a progression, that they fall in the order listed, but <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Kubler</span>-Ross noted that this is not necessarily true. Many people skip one or another, and many people get stuck in one of them. I talk to a lot of parents. I see many of them stuck in one. I, myself, was stuck in Depression for quite some time. I now believe that, as parents, the best way to help our children is to get ourselves to the state or stage of Acceptance.<br /><br />Denial seems to affect dads the most, more so than moms. They often get stuck in "there is absolutely nothing wrong with my kid" or they consume themselves with work to avoid having to face the day-to-day reality of having a child who can't be "fixed." I'm not saying ALL dads are like this, but anyone who's been paying attention to the world of autism can see that it's the moms who most often jump past Denial and into Anger.<br /><br />I see a LOT of people stuck in Anger. They're certainly all over the Internet. SOMEBODY -- the Government, the CDC, the doctors, the "Big <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Pharma</span>" companies -- did this to their child, and "They" are gonna pay! Personally, I think this is the most dangerous stage for a parent to be stuck in. It helps to be in it for a short time, because anger can be very motivating and can give us strength, and we parents certainly need to be motivated and strong to get our children what they need. However, at some point, parents need to get over it if they're ever really going to help their child move on with life and living with autism. <br /><br />Bargaining - I'm not sure I see this that often, but then again, it may be very personal and internal. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Kubler</span>-Ross identified people bargaining with God, and that can be a very private thing. Then again, is it a form of bargaining when people try any and all desperate and potentially harmful measures to cure their child? Many people seem to me like they'll certainly trade a "whole" child for the one they were given, no matter what they like to call it (again, Denial).<br /><br />Depression, as I mentioned, is one I'm intimately familiar with. I believe, and I've seen studies confirming this, that most mothers of children with autism suffer depression to some degree and for varying amounts of time. It is an incredibly exhausting, overwhelming, and guilt-ridden state of being to mother a child with autism, especially when Dad is stuck in denial and not helping. If you think you might be stuck in Depression, please get yourself help! Please ask for help from family and friends!<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Kubler</span>-Ross considered Acceptance the healthiest stage of grief. Whatever the catastrophe, it's best to move on and live a life that acknowledges the death, the break-up, the diagnosis, and cope with what comes after. Autism, right now in 2008, is at a point that makes this difficult. Because there are theories about what causes it flying around out there with no solid answers, it's hard to just accept that this is how this child's life is going to be and to plan the future accordingly. It's hard to accept that we can strive for a cure, we can do all the therapies and the treatments, while at the same time, we have to accept that things might not change in this generation. Discoveries and cures can and do take decades, especially with something as complicated as this. If it was as simple as "vaccines cause this, " we'd be over and done with it already.<br /><br />I've heard that it's very different for parents whose children are born with <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Down's</span> Syndrome. Because medical science has pinpointed a definite cause, because the parents know for certain that nothing they did caused it, because they know for certain that there is no curing it, those parents can more easily get to Acceptance. They know they need to work on a plan for the future. They know they need to "move on" to help their child for their entire life.<br /><br />I believe that for our children to have a happy and positive future, we parents of children with autism need to take a lesson from those parents and get ourselves to Acceptance.<br /><br />Of course, there will be many parents who angrily retort that I'm telling them to "give up." That's not it at all. Don't give up! But don't consume yourself to the point that you and your child are not enjoying life now, and please, please, please, don't get stuck to the point that you aren't thinking about the future because you're convinced your child will be cured soon and the future will then be taken care of. As the saying goes, "hope for the best but plan for the worst." That's Acceptance.BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-6731606657077811382008-03-02T11:15:00.004-06:002008-03-10T12:33:38.374-05:00"Curing" Autism<span style="font-family:trebuchet ms;">There is so much fervent talk about curing autism. It seems that if, as a parent, you don't put every ounce of your energy into "curing" or "recovering" your child, you have failed. </span><br /><span style="font-family:trebuchet ms;"></span><br /><span style="font-family:trebuchet ms;">I believe there currently is no "recovery" right now for most of our children, and that there won't be a cure in this generation's lifetime. To some, that belief means I'm not "doing everyting I can." I'm not "fighting the war" on autism, I'm "giving up hope." But as my dear late father would say, "I'm not a pessimist, I'm a realist." Besides that, who and what are we fighting this "war" against? It's beginning to feel to me a lot like a war against my son and who and how he is, not a war against something that's bringing him harm.</span><br /><span style="font-family:Trebuchet MS;"></span><span style="font-family:trebuchet ms;"></span><br /><span style="font-family:trebuchet ms;">Our children are not deaf - they hear us talk about them, and we talk constantly! I believe most of them understand what's being said and after a while, it must sound to them like they are bad, they need fixing. The Internet is full of adults who angrily call their parents "curebies" and hate them for what they've done in the interest of curing them. </span><br /><span style="font-family:trebuchet ms;"><br />The problem I have with people intent on cures and "doing everything they can for their child" is that they are NOT "doing everything they can for their child." "Doing everything that they can for their child" would involve spending half of that fervent energy on making that child's life, as it is with autism, happy, comfortable, and containing a future -- just in case autism isn't cured in their lifetime. Focusing on a cure alone suggests that there is no future without a cure, there is no happiness without a cure, the person with autism is not good enough without a cure.<br /><br />Because I have decided to give up on the burden of maintaining a GFCF diet that hasn't netted any measurable results, because I haven't tried chelation or hyberbaric, it's suggested by some that I'm "not doing everything for my child." On the contrary, allowing my child to BE and be happy and accepted and not turn him into my own personal science experiment IS doing everything I can. Don't misunderstand me: I do think we need a cure. This disorder is VERY tough on family and society. But it's not cancer, which is a disease that can kill a person, and an unwelcome assault on the body. Autism is, to those personally affected, a way of being, and who wants to be told they must essentially change to be accepted? We must put as much energy into planning and preparing for a future for our children AS THEY ARE as we do to figuring out why this "epidemic" is happening.</span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com1tag:blogger.com,1999:blog-666711715332777149.post-86320709448787801272007-12-29T08:38:00.000-06:002008-12-09T20:05:02.687-06:00How about for one day YOU be a "hero?"<a href="http://2.bp.blogspot.com/_6O3YR321jRc/R3ZkNbZcJjI/AAAAAAAAAA0/6W56X27JQAk/s1600-h/IncredibleColin.jpg"><img id="BLOGGER_PHOTO_ID_5149413405800277554" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://2.bp.blogspot.com/_6O3YR321jRc/R3ZkNbZcJjI/AAAAAAAAAA0/6W56X27JQAk/s320/IncredibleColin.jpg" border="0" /></a><br /><div><span style="font-family:trebuchet ms;">There's a new book out titled "Autism Heroes" that exalts the heroics of parents of children with autism. "Heroics" being pretty much defined as doing everything they can for their kid. As the mother of a child with autism I get a lot of "I could NEVER do what you do, Julie!" from people. I don't get it. If their child had autism, they'd stuff him in the garbage and walk away? They'd return him to the hospital as defective? They'd chain him in the basement and pretend he doesn't exist? Being a parent to a child who happens to have this disorder makes me and other parents in this situation heroic?</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Hell, I could never do what I do, either. But I have to. My son is mine. I love him. I want the best I can do for him, like anyone else. There aren't a lot of other options.</span><br /><br /><span style="font-family:Trebuchet MS;">I'm often exhausted and depressed. I'm not sure I CAN "do it" one more day. Friends and family could, for one day, stop exclaiming their praises over my heroics (or stop telling me what I should be doing) and give me a hand. Yes, people, you COULD do what I do! </span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Help someone out who has a situation that they didn't bargain for. Give them a break for one day -- or overnight. </span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Now THAT would be heroic.</span></div>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-8996608289014348812007-12-21T14:00:00.000-06:002007-12-25T13:19:56.543-06:00Ranson Notes Recanted<span style="font-family:trebuchet ms;">The "Ransom Notes" have been removed, thank goodness. The </span><span class="blsp-spelling-corrected" id="SPELLING_ERROR_0" style="font-family:trebuchet ms;">psychiatric</span><span style="font-family:trebuchet ms;"> clinic in New York that was advertising for awareness got enough emails and phone calls from pissed-off parents, like myself, to re-think their message to the public. (See my previous blog)</span><br /><br /><span style="font-family:trebuchet ms;">Their main reasoning for pulling the inflammatory ads seems to be that their staff is spending too much time fielding the calls and emails. It was merely their intention to draw attention to the serious issue of untreated childhood psychological problems, but they unintentionally offended parents of children with these issues. They really didn't see it coming, which is an indication of how out-of-touch most of the medical community is with the reality of day-to-day life for families dealing with autism spectrum disorders and other psychological disorders.<br />A psychiatric clinic cannot -- at this time, anyway -- 'rescue' my son. They have medications to dispense. My son's psychiatrist, while a great guy and a very good doctor, relies heavily on MY input, rather than the other way around. He doesn't have many answers for us, other than trial-and-error on treating my son's most disruptive symptoms with medications. That's all modern psychiatry can offer families right now. Why offend us with bizarre "ransom notes" in the name of helping us?</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">I really hope they mean it what they say in the recant:</span><br /><blockquote></blockquote><br /><span style="font-family:Trebuchet MS;"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">"Work</span> with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority."</span><br /><span style="font-family:Trebuchet MS;"></span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0tag:blogger.com,1999:blog-666711715332777149.post-14125206677212902532007-12-15T07:59:00.000-06:002007-12-15T08:39:18.031-06:00Again, all awareness is not good<span style="font-family:trebuchet ms;"><blockquote><span style="font-family:trebuchet ms;"></span></blockquote><blockquote><span style="font-family:trebuchet ms;">We have your son. We will make sure he will no longer<br />be able to care for himself or interact socially as long as he lives.<br />— Autism<br /></span></blockquote><p>This is one of the six “ransom notes” that make up a public service campaign by the New York University Child Study Center to raise awareness of what Dr. Harold S. Koplewicz, the center’s founder and director, called “the silent public health epidemic of children’s mental illness.” The shocking billboards and posters are plastered all over New York.</p><p></span></p><span style="font-family:trebuchet ms;">The idea is to wake up parents, to shake them out of their supposed denial, and get them to bring their children in for treatment. Who do they think is in this denial? I'm well aware, as are the vast majority of parents who have children with autism, that my child has the disorder. We don't need a billboard to tell us! In fact, my experience, and the experience of almost every other parent I've talked to (and I've talked to many) is that it's been THE PARENTS trying to convince the DOCTORS that something 'isn't right' with our babies, not the other way around. </span><p><span style="font-family:Trebuchet MS;">What I'd like to know is this: is New York University going to "rescue" my son from his so-called "kidnapper?" There is no cure for autism. As a parent, I have tried everything to help my child, and a rude smack across the head, such as this campaign is, doesn't help me or my child.</span></p><p><span style="font-family:Trebuchet MS;">What's the point, then, other than shock value, for this campaign? Why load another pile of despair and hopelessness on parents who already fight every single day to stay positive and optimistic? If you want to work on awareness, work on making society aware. I'm already well-aware, believe me.</span></p>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com2tag:blogger.com,1999:blog-666711715332777149.post-90868166740905668052007-11-15T10:15:00.000-06:002007-11-15T11:13:58.748-06:00Has Jenny abandoned the Indigo and Crystal Children?Sorry, I didn't mean to turn this into a Jenny McCarthy bash, but I worry that society in general and young moms of young children in specific are getting their information about autism from the wrong places.<br /><br />If you read Jenny's book, WHICH I DID, she mentions Indigo and Crystal Children. It sounds suspiciously like a lead-in to her next book. Then, if you Google "Jenny McCarthy and Indigo Children" a site comes up called "Indigo Moms." The intended purpose of the website is listed in a quote by Jenny on another site, "Children Of The New Earth:"<br /><blockquote></blockquote><span style="color: rgb(102, 102, 204);font-size:85%;" >J<span style="font-weight: bold;">enny says: "There were so many times I would be sitting around with my son, Evan, and wish that I could join a 'mommy and me' group that loved talking about Indigos and Crystals. I always felt like there was no one around me who 'got' it. That’s why I came up with the idea to have women post their info so as more mommies become enlightened they can contact someone in their own neck of the woods to chat and share stories with."</span><br /><br /></span>Lo and Behold, it's no longer available. Is it possible that her editors, publishers, and "handlers" had to rein her for credibility purposes? Hmmmmm.... If you look into the whole movement of Indigo and Crystal children, you'll find it's a New Age belief that a whole generation of angelic, alien children have been sent here to save us all from ourselves.<br /><br />Jenny McCarthy believes her son, Evan, is a "Crystal Child." Hey, isn't this the kid she wanted to "fix?" Which is it? He needs to be fixed, he can be fixed, he has been fixed --- OR he's been sent by aliens to fix US?<br /><br />Again, my point is: be careful where you get your information on autism and decide what's best and right for YOUR family.<br /><div style="text-align: left; color: rgb(102, 51, 255); font-style: italic;"><span style="line-height: 20px;font-family:Verdana;font-size:85%;" ></span></div>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com2tag:blogger.com,1999:blog-666711715332777149.post-12634093123956649882007-11-09T09:25:00.000-06:002007-11-12T11:30:54.931-06:00Jenny McCarthy has given me a "Timeline to Fix" my kid<span style="font-family:trebuchet ms;">Jenny, girl, you're a Playboy Bunny past your prime, an author, a comedienne, a mother. But you're no expert, despite your "PhD in Google." </span><br /><br /><span style="font-family:trebuchet ms;"></span><br /><span style="font-family:trebuchet ms;">I know you mean well. I know your intention is to wake up the world to the autism epidemic (and yes, it IS an epidemic). I know you want to send the message to moms with kids who have autism that they need to shake themselves out of denial because denial wastes time. But what you state as encouragement sticks a knife into the heart of every mother who has DONE all the stuff you've done (except having them blessed by Mormons) and still, their kid is not "fixed."</span><br /><span style="font-family:trebuchet ms;"></span><br /><br /><span style="font-family:trebuchet ms;">Honey Bunny, despite all my best efforts, my kid's not completely "fixed" and neither is yours. You have to watch what language you're using, because you can easily crush a mom's hope when all she does is just not "enough." Your son is young, and you have many more years ahead of you. There's so much more than you can even imagine. Puberty hits our sweet little "Indigo Children" (whatever that is) just the same as other kids. Are you prepared for that?</span><br /><span style="font-family:trebuchet ms;"></span><br /><br /><span style="font-family:trebuchet ms;">You had my ex-husband's girlfriend convinced that she could come, in a blaze of glory, and "fix" my kid. To me, that felt like an accusation that for ten years I did nothing. Why does she think my ex was so "neglected" in our marriage? </span><br /><br /><span style="font-family:trebuchet ms;"></span><br /><span style="font-family:trebuchet ms;">Jenny Dear, you said on the Oprah show that the clock was ticking, and that age 11 is some kind of crucial deadline and that all hope is lost after that. "Girlfriend The Savior" soon found out that there are waiting lists to see doctors, and was (HELLO, welcome to my world!) frustrated that they didn't UNDERSTAND the crucial "timeline" we're dealing with. She also found out that you can carefully and strictly "do" the diet and supplements and still not see a "fixed kid." She also realized, in going over the lists of what you and your biomedical doctors say causes autism, HER kids should be affected by this crappy disorder, not mine. Don't misunderstand me: I no more want her sweet boys to be autistic any more than I want mine to be. I'm just saying it's not all that cut-and-dried. This disorder is UNFAIR, still mysterious, and NOT YET CURABLE, and you're contributing to the confusion.</span><br /><span style="font-family:trebuchet ms;"></span><br /><span style="font-family:trebuchet ms;">The age of 11 does not hit like a ticking time bomb. Our kids CAN and DO continue to improve all their lives. How dare you declare doom on my child at age 11! </span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:trebuchet ms;">Jenny, my son IS much better off than he was at diagnosis. Either because of -- or despite -- all the best efforts, he can have rudimentary conversations and tell us what he wants and needs. He can to some extent hang out with the other kids and be tolerated, sometimes even welcomed. But "fixed" would mean that, like any other 10-year-old, he'd be talking baseball or even playing baseball or soccer or Monopoly or a million other things that kids do.</span><br /><br /><span style="font-family:trebuchet ms;"></span><br /><span style="font-family:trebuchet ms;">Either because of or despite all the best efforts, my son wants hugs and kisses now, instead of pushing away. How gratifying for me and his other loved ones! But if he was "fixed" he would be getting embarrassed like any 10-year-old does when his mom wants a kiss before he gets on the bus. Heck, for that matter, he'd be walking or biking to school from my house, instead of being picked up by the "short bus."</span><br /><span style="font-family:Trebuchet MS;"></span><br /><br /><span style="font-family:Trebuchet MS;">I'm happy that your book is bringing attention to autism. It should be declared a national emergency! But your book also puts it all back into the laps of the already exhausted, unjustly blamed, and discouraged moms, just the way the insane and unqualified Dr. Bettelheim did with his idiotic 'Refrigerator Mother' theory in the '80s. In doing so, Dr. B claimed the right to take a generation of children away from their mothers and subjected those mothers to a lifetime of undeserved guilt. What effect will your words, "you have a timeline to fix your kids" have on THIS generation of mothers?</span><br /><br /><span style="font-family:Trebuchet MS;"></span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com11tag:blogger.com,1999:blog-666711715332777149.post-76206161652868525182007-10-23T11:04:00.000-05:002007-10-23T11:12:37.848-05:00Would this contract hold up in court?<p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">Desperate times make for desperate mothers. Last year, when he was nine, my son Colin started refusing baths. This water paranoia seemed to have come out of the blue, because he never had trouble with it before. I even have really adorable video footage of him in a big Jacuzzi tub with his brother, playing with bubbles and giggling his head off. He’s never fallen in the tub, so when he suddenly just flat-out refused to get in the tub for his bath one evening, I figured it was just a fluke that day and put off bath-time for the next night. <o:p></o:p></span></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">Things didn’t go any better the next evening, either. In fact, my failed attempt trying to coerce Colin into the tub took hours and a lot of years off my life. Suddenly, something that my son had enjoyed, or at least tolerated, had become what I call “a Thing with a capital “T” and even though Colin is “verbal,” he couldn’t explain to me why getting into the bathtub was suddenly so intolerable.<o:p></o:p></span></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">The next day, with my son becoming more in need of a bath, my visiting sister told me to relax and allow her to handle it. No such luck. The boy who was typically eager to please his favorite auntie behaved like a cat being dipped for fleas and my sister ended up the wetter one.<o:p></o:p></span></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">When I’m up against a dilemma that seems to have no solution, I sometimes get just plain silly. This was one of those times.<br />I don’t know which exhausted, over-wrought corner of my brain the idea came from, but I decided, just for the heck of it, to ask Colin to sign a “Bath Contract.”<o:p></o:p></span></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">Now, I’m no lawyer, and I’m sure it wouldn’t have held up in court, especially because it didn’t contain any big legal words, but this is what I typed up:<o:p></o:p></span></span></p> <p class="MsoNormal" style="margin: 0in 0.5in 7.95pt; line-height: 93%; font-family: trebuchet ms;font-family:trebuchet ms;"><span style="font-size:100%;"><i><span style="line-height: 93%;" lang="EN">“I, Colin, agree to take a bath every Sunday night before bed.<br />I don’t have to take a bath any other night if I don’t want to. Love, Colin” <o:p></o:p></span></i></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">I left a space for him to write his name then read it to him and explained that <i>he does need to take a bath sometime</i>, and that if he wrote his name on it, it meant he would <i>have </i>to take a bath, but only on Sundays, that’s it. I just assumed he’d refuse to “sign” it and run off. <o:p></o:p></span></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">Imagine my surprise when he took the pen from my hand and wrote “C-O-L-I-N” very carefully and deliberately under the word “love.” I explained again, in simple language, how that meant he was making a promise and it was “<i>the rule” </i>that if he signed his name under a promise, he’d have to keep the promise. I then hung the “bath contract” on the refrigerator and proceeded to point it out to him for the rest of the week.<span style=""> </span>He always responded to my reminders with a “yup” or an “okay,” but I didn’t really expect anything to come of it.<br />I just braced myself for Sunday evening’s bath battle.<o:p></o:p></span></span></p> <p style="font-family: trebuchet ms;font-family:trebuchet ms;" class="MsoNormal" ><span style="font-size:100%;"><span lang="EN">On the next Sunday, after supper, I took the “contract” down and showed it to Colin, told him it was Sunday, which meant it was time to keep the promise he signed, and watched in utter amazement as he said “okay” and walked up the stairs, got undressed, and turned on the bath water!!! I allowed him to control the temperature, which also might have had something to do with his new attitude of cooperation, and helped him calmly step into the tub safely and sit down and get clean, finally.<o:p></o:p></span></span></p> <p class="MsoNormal" style="font-family:trebuchet ms;"><span style="font-size:100%;"><span lang="EN" style="font-size:12;"><span style="font-family: trebuchet ms;font-size:100%;" >After a lot of “yays!” and “what a good boys!” we called my sister with the good news. I put the freshly clean Colin on the phone to tell her himself: “I take a bath, Aunt Bowbie!” Aunt Barbie had heard about the “bath contract” and we had had a good laugh over the stupid things we sometimes try as mothers to get our kids, autistic or not, to do what we need them to do. Unbelievably, we haven’t had an issue with baths ever since. Still, I’m afraid to jinx our record and try this crazy idea on the door-slamming problem or the no-eating-Nestle’s-Quik-powder with a spoon at 5 a.m. issue….</span><o:p></o:p></span></span></p> <p class="MsoNormal" style="font-family:trebuchet ms;"><span style="font-size:100%;"><span style="" lang="EN"><o:p> </o:p></span></span></p> <p class="MsoNormal" style="font-family:trebuchet ms;"><span style="font-size:100%;"><o:p> </o:p></span></p>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com3tag:blogger.com,1999:blog-666711715332777149.post-73288418335472847862007-10-20T21:53:00.000-05:002007-10-23T11:12:18.506-05:00Super-awareness: freedom to sniff and finding the good stuff.<span style="font-family:trebuchet ms;">A lot of people are under the mistaken assumption that people with autism are unaware of their surroundings. My experience with my son, Colin, is that they are, on the contrary, super-aware. Super-awareness can look like unawareness if you don't understand that there's a lot more to experience in the world than the average person allows himself.</span><br /><span style="font-family:Trebuchet MS;"></span><span style="font-family:Trebuchet MS;"></span><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Colin is a super-sniffer. He's a bloodhound wearing the disguise of a ten-year-old boy. For him, it can be a wonderfully intoxicating way to discover the world. And his autism gives him the gift of not caring what anyone thinks when he sniffs unabashedly. What freedom!</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Take a baseball mitt, for example. Wouldn't you, if you could, love to just stuff your face deep into a baseball mitt and I-N-H-A-L-E the rich leather scent of it? Try it, the next time no body's looking.</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Being a super-sniffing bloodhound can net you the good stuff, too. One morning, I woke up, as I've often done, to the sound of Colin rummaging in the cupboards. I called to him. As usual, we did our little "thing." I groggily called out his name and he called back, "whaa--aat?" a few dozen times, which is a clever ploy. What's going on in that cunning brain of his is this: "I can pretend I don't hear you, you'll think I'm having auditory processing difficulties, and I can keep on doing what I'm doing until you come find me."</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">It works, of course. Having autism doesn't mean he's unaware OR stupid. I finally had to haul my butt out of bed. I found him washing his hands in the powder room, trying to hide the evidence, if you will. He wore a large grin, like the Joker, but he wasn't actually smiling. What WAS that?! </span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">"Colin, honey, what's on your face?"</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">"What?"</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">"What's that on your face, Sweetie?"</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">"What?" etc...</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Finally, he had to 'fess up. I wasn't going away. He explained, </span><span style="font-family:Trebuchet MS;"><span style="font-family:Trebuchet MS;"><span style="font-family:Trebuchet MS;"><span style="font-family:Trebuchet MS;"><strong><span style="font-family:Trebuchet MS;"><strong>"I smelled chocolate and found it in a yellow can." </strong></span><br /></strong></span></span></span></span><span style="font-family:Trebuchet MS;"><span style="font-family:Trebuchet MS;"><span style="font-family:Trebuchet MS;"><span style="font-family:Trebuchet MS;"><strong></strong></span></span></span></span><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">Yellow can?! I ventured into the kitchen and found brown powder EVERYWHERE. Colin ran in after me and grabbed his yellow can -- Nestle's Quik -- brought it to his mouth and tipped it back like a drunk getting the worm out of a tequila bottle. Which explained the chocolate "smile." Why doesn't it ever occur to me to grab a camera during these precious moments? I suppose it has something to do with the fact that these moments usually occur between 2 a.m. and 6 a.m. He knew he had to move fast if he was going to get another fix before I took the yellow can filled with bliss away from him.</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;">I was jealous. Sensible, middle-aged mothers do not have the freedom to grab a can of Quik and toss it down it back, no matter how much they'd love to. The smell of chocolate lingered in the house for days, though. A sweet reminder to those of us who don't have the gift of being a super-sniffer, super-aware.</span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;"></span><br /><span style="font-family:Trebuchet MS;"></span><br /><br /><span style="font-family:Trebuchet MS;"></span>BeadBrainhttp://www.blogger.com/profile/06624763327099646843noreply@blogger.com0