tag:blogger.com,1999:blog-69167934798814029462024-03-12T18:33:42.509-07:00Acceptance: The New Cure For Autism"Parents of children with special needs assisting other families with special needs"Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-6916793479881402946.post-89563193026293610042014-01-23T11:14:00.001-08:002014-01-23T12:02:38.426-08:00A new form of ABA? Maybe....<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/RsjQrM8iuIE" width="480"></iframe>Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com1tag:blogger.com,1999:blog-6916793479881402946.post-19476070018280988072011-10-12T13:47:00.000-07:002011-10-12T14:08:35.579-07:00Here's Some Great Info!<!--[if !mso]> <style> v\:* {behavior:url(#default#VML);} o\:* {behavior:url(#default#VML);} w\:* {behavior:url(#default#VML);} .shape {behavior:url(#default#VML);} </style> <![endif]--><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <p class="MsoNormal"><span style="color: windowtext;">From the book:</span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style="font-weight: bold;">“Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm </span><br /></span></p> <p class="MsoNormal"><span style="color: windowtext;">It begins……<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>As a mother of a very young child with autism, one of the first things I learned was that on some days, the only predictable thing about it is the unpredictability; the only consistent attribute-the inconsistency.<span style=""> </span>There is little argument on any level that autism is baffling, even to those who spend their lives around it.<span style=""> </span>The child who lives with autism may look “normal”, but his behavior can be perplexing and downright difficult.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Autism was once thought an “incurable disorder”, but that notion is crumbling in the face of knowledge and understanding that is increasing even as you read this.<span style=""> </span>Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging aspects as par of their fulfilling and dynamic lives.<span style=""> </span>Some even seek to do away with the notion of “cure”.<span style=""> </span>In a widely read <i style="">New York Times</i> article in December 2004, Jack Thomas, a 10<sup>th</sup> grader with Asperger’s Syndrome, got the world’s attention by stating: “We don’t have a disease, so we can’t be ‘cured’.<span style=""> </span>This is just the way we are.”<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Jack and I are on the same page here: when “neuro-typicals” frame the challenges of autism in neuro-typical terms, they unwittingly close the door to the kind of alternative thinking that has everything to do with how far those with ASD can go.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>This is the mantra of my column, “Postcards from the Road Less Traveled” (Autism Asperger’s Digest).<span style=""> </span>In a 2005 column, I asked parents to jot down brief descriptions of some of their child’s most challenging behaviors, and then to rephrase them in the positive.<span style=""> </span>Is the child stand-offish, or able to entertain herself and work well independently?<span style=""> </span>Is she reckless, or adventuresome and willing to try new experiences?<span style=""> </span>Is she obsessively neat, or does she have outstanding organizational skills?<span style=""> </span>Does she pester you with endless questions, or does she have a curiosity about her world as well as tenacity and persistence?<span style=""> </span>Why do we try to fix the kid who “perseverates” but admire the one who “perseveres?”<span style=""> </span>Both are forms of the same word meaning “refuses to stop.”</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Here’s the one I hate the most: Does your child “suffer from autism”, or does he “live with autism?”</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Choose “life” over “suffering”.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>The column is called “Postcards from the Road Less Traveled” because my editor, Veronica Zysk, and I thought the connection to Robert Frost’s poem was apt.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span><i style="">Two roads diverged in a wood, and I –</i></span></p> <p class="MsoNormal"><i style=""><span style="color: windowtext;"><span style=""> </span>I took the one less traveled by,</span></i></p> <p class="MsoNormal"><i style=""><span style="color: windowtext;"><span style=""> </span>And that has made all the difference.</span></i></p> <p class="MsoNormal"><i style=""><span style="color: windowtext;"> </span></i></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>One reader disagreed: “Postcards are from people who are having a good time on a trip.<span style=""> </span>I’m not sure if that’s what you want to portray.”</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>I think postcards are so much more than that.<span style=""> </span>They let loved ones know you’ve arrived at a certain place safely.<span style=""> </span>The say, “I am thinking of you even though I am far away”, and they share the sights you are seeing with that someone so they can be with you across the distance.<span style=""> </span>They may recount trip-related woes and how you resolved them, hopefully with a bit of humor.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>So my answer to that reader is yes, that is exactly what I want to portray, in the column, in this book, and in all my dialogue with parents and teachers.<span style=""> </span>I <i style="">am</i> having a good time on this trip.<span style=""> </span>The trip has been fueled by hope, possibility, undreamed-of accomplishment (his, mine and my whole family’s) and “return on investment”.<span style=""> </span>But we did not start out from there.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>We started with a basically sweet-tempered but nonverbal child who would lapse into baffling episodes of hair-tearing, cat-scratching, furniture-throwing violence; who wore clothes only when socially necessary and who physically backed away from many classroom and playtime activities with his hands over his ears; who laughed at all the wrong times and didn’t seem to experience pain or cold in a typical way.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Bryce was identified with autism by a public school early intervention team at the age of three.<span style=""> </span>I went through five stages of grief in the time it took to end the initial meeting.<span style=""> </span>My older son had been identified two years earlier with ADHD.<span style=""> </span>I already knew about the therapies, the social challenges, the never-ending vigilance-and the exhaustion.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Raw fear motivated me in the beginning.<span style=""> </span>I could not bear to imagine Bryce’s fate as an adult if I did not do everything within my power to equip him to live in a world where I would not always be around.<span style=""> </span>I could not rid my head of words like “prison” and “homeless”.<span style=""> </span>Not for a nanosecond did it occur to me to leave his future to the professionals or to the ephemeral idea that “he might outgrow it”.<span style=""> </span>His very quality of life was at stake, and failure was simply not an option.<span style=""> </span>This is what got me out of bed every morning and drove me to take the actions I did for him.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Jump a few years ahead with me now to the turn of the century.<span style=""> </span>At the school assembly, adorable first graders step to the microphone one after another to answer the question: What would you like to be in the new millennium? “A soccer star!” is one popular response.<span style=""> </span>“A pop singer!”;<span style=""> </span>“A race car driver!”;<span style=""> </span>“Cartoon artist, veterinarian, firefighter”! </span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Bryce has considered the question carefully: “I think I’d just like to be a grown-up.”</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Applause breaks out and the principal speaks deliberately.<span style=""> </span>“The world would be a better place,” he says, “if more people aspired to what Bryce aspires to.”</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Here is the gist of what I know to be true.<span style=""> </span>Your child’s autism does not mean that he, you and your family will not lead full, joyous, meaningful lives.<span style=""> </span>You may be scared, but dare yourself to believe this….with a caveat.<span style=""> </span>How much of that full measure we achieve with our kids is greatly dependent upon the choices we make for and about them given their individuality and uncommon character.<span style=""> </span>A memorable passage form Nora Ephron’s story <i style="">Heartburn</i> has the protagonist asserting that when your dream breaks into a million pieces, you can either fall a part, or you can go get yourself a new dream.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Some of you will be reading this as newcomers to the world of autism.<span style=""> </span>To you I say: autism itself is not awful.<span style=""> </span>Not understanding it, not having people around you who understand it, not getting the help that is surely out there for your child – that can be very awful.<span style=""> </span>You are at the beginning of your journey, and we won’t deny that it’s a long one, will we?<span style=""> </span>And you would not begin any long journey without first learning a little bit about your route.<span style=""> </span>That’s what this book is for – to point out some basic signposts you will likely pass along the way, so that when you do, they will have a familiar look to them and be less foreign and frightening.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Some of you are already well-acquainted with the challenges of autism; sport a few scars too, I’ll bet.<span style=""> </span>This book can speak for you and your child when so many need to hear your message: teachers, parents, siblings, in-laws, babysitters, coaches, bus drivers, peer parents, friends of siblings, clergy, and neighbors.<span style=""> </span>Pass it around.<span style=""> </span>Watch the dominos fall.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>This book will equip those around our children with simple understanding of autism’s most basic elements.<span style=""> </span>That understanding has a tremendous impact on the children’s ability to journey towards productive, independent adulthood.<span style=""> </span>Autism is an extremely complex disorder but throughout my experience, I saw its myriad characteristics fall into four fundamental areas:<span style=""> </span>sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues.<span style=""> </span>All are crucial.<span style=""> </span>Here’s why:</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Sensory processing challenges: It’s inescapable.<span style=""> </span>A child cannot be expected to absorb <span style=""> </span>cognitive or social learning, or even “behave”, when his environment is a constant <span style=""> </span>bombardment of unpleasant sensations and nasty surprises.<span style=""> </span>Your brain filters thousands of <span style=""> </span>multiple-sensory inputs (what you see, what you hear, what you smell, etc.) simultaneously, <span style=""> </span><span style=""> </span>but his does not.<span style=""> </span>It can provoke the equivalent of twenty-four-hour “road rage” as all those <span style=""> </span>signals jam hopelessly in the brain stem.<span style=""> </span>Think of how you feel trapped in the stifling fumes <span style=""> </span>and racket of traffic with no ability to affect your situation.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Speech/language delays and impairments:<span style=""> </span>Without adequate means of expression, needs and <span style=""> </span>wants will remain unmet.<span style=""> </span>The inevitable result is anger and frustration, not learning and <span style=""> </span><span style=""> </span>growing.<span style=""> </span>The ability to communicate, whether through spoken language, pictures, <span style=""> </span>signing/semaphore or assistive technology is a bedrock.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Social interaction skills:<span style=""> </span>Elusive and ephemeral, these skills change from culture to culture, <span style=""> </span>and from setting to setting within a culture.<span style=""> </span>But the lack of them can isolate a child to a <span style=""> </span>devastating degree.<span style=""> </span>The child with autism, who truly doesn’t “get it”, paddles against a brutal <span style=""> </span>current in first comprehending, then executing.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Whole child/self-esteem issues:<span style=""> </span>Every last person on the planet is a package deal.<span style=""> </span>We want <span style=""> </span>to be accepted and appreciated for what we are as a whole, not a bundle of traits and quirks <span style=""> </span>to be cherry-picked at will by others.<span style=""> </span><b style="">The child with autism does need skilled guidance <span style=""> </span>to achieve a comfortable place in the larger world, but working toward that goal <span style=""> </span><span style=""> </span>with positive energy and optimism is not the same as “fixing” the child.<span style=""> </span>They <span style=""> </span>already possess much that can be celebrated; we must now go out and love and <span style=""> </span>guide them with the same acceptance of whole self we want for ourselves.</b></span></p> <p class="MsoNormal"><b style=""><span style="color: windowtext;"> </span></b></p> <p class="MsoNormal"><b style=""><span style="color: windowtext;"><span style=""> </span></span></b><span style="color: windowtext;">Bryce’s successes are firmly rooted in that solid sense of self-esteem, his hard-won comfort with his physical environment and his ever-expanding ability to express himself.<span style=""> </span>With those pieces in place, social and cognitive learning followed.<span style=""> </span>As his life became easier, so did mine.<span style=""> </span>Each passing year brought deeply gratifying triumphs: the day he swam to a trophy finish in a city-wide swim meet, the day he sang and danced his way through <i style="">Charlie and the Chocolate Factory</i> as Grandpa Joe, the day he rode his two-wheeler for the first time, the time we worried no one would come to his birthday party and forty people showed up, his elation at making it through his first Scout campout, and his utter euphoria after successfully working up the nerve to ask the girl he’d admired since kindergarten to dance at the sock hop.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>And the truth is, in time I came to realize that I would not change him even if I could.<span style=""> </span>I wouldn’t take his autism away.<span style=""> </span>I wouldn’t have him be anything other than exactly what he was.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Though the four elements we’ve just discussed may be common to any children with autism, keep in mind that it is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike.<span style=""> </span>Every child will be at a different point on the spectrum.<span style=""> </span>And, just as importantly, every parent, teacher and caregiver will be at a different point in their understanding of the spectrum.<span style=""> </span>Child or adult, each will have a unique set of needs.<span style=""> </span>Like the millions of pixels that comprise a television image, each person involved is a complicated composite.<span style=""> </span>That’s why there is no single recipe for success and why guiding, educating and appreciating the child with autism will be a continual work-in-progress.<span style=""> </span>There will be little time off for complacency.<span style=""> </span>The famous opera diva Beverly Sills, mother of two special needs children, once said: “There is no shortcut to anyplace worth going.”<span style=""> </span>True – but there is the joy of discovery in the journey.<span style=""> </span>The guidebook is in your hands.<span style=""> </span>Let’s get started.</span></p><p class="MsoNormal"><span style="color: windowtext;"> HERE ARE TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW:</span></p><span style="color: windowtext;"></span><span style="color: windowtext; font-weight: bold;"></span> <p class="MsoNormal"><span style="color: windowtext;"><span style="font-weight: bold;"># 1:</span></span></p><p class="MsoNormal"><span style="color: windowtext;"><span style="font-weight: bold;"></span> I AM FIRST AND FOREMOST A CHILD.<span style=""> </span>I HAVE AUTISM.<span style=""> </span>I AM NOT PRIMARILY “AUTISTIC”.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>My autism is only one aspect of my total character.<span style=""> </span>It does not define me as a person.<span style=""> </span>Are you a person with thoughts, feelings and many talents, or are you individualized by one trait?<span style=""> </span>Are you heavy (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? <span style=""> </span>Those may be things that I see first when I meet you, but they are not necessarily what you are all about.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>As an adult, you have some control over how you define yourself.<span style=""> </span>If you want to single out a sing characteristic, you can make that know.<span style=""> </span>As a child, I am still unfolding.<span style=""> </span>Neither you nor I yet know what I may be capable of.<span style=""> </span>Defining me by one characteristic runs the danger of setting up an expectation that may be too low.<span style=""> </span>And if I get a sense that you don’t think I “can do it”, my natural response will be: Why try?</span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p><span style="color: windowtext;"></span><span style="color: windowtext; font-weight: bold;"></span> <p class="MsoNormal"><span style="color: windowtext;"><span style="font-weight: bold;"># 2:</span></span></p><p class="MsoNormal"><span style="color: windowtext;"><span style="font-weight: bold;"></span>MY SENSORY PERCEPTIONS ARE DISORDERED.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>This means that the ordinary sights, sounds, smells, tastes and touches of every day that you may not even notice can be downright painful for me.<span style=""> </span>The very environment in which I have to live often seems hostile.<span style=""> </span>I may appear withdrawn or belligerent to you, but I am really just trying to defend myself.<span style=""> </span>Here is why a simple trip to the grocery store may be hell for me.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>My hearing may be hyper-acute.<span style=""> </span>Dozens of people are talking at once.<span style=""> </span>The loud speaker booms today’s special.<span style=""> </span>Music whines from the sound system.<span style=""> </span>Cash registers beep and cough, a coffee grinder is chugging.<span style=""> </span>The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums.<span style=""> </span>My brain can’t filter all the input and I’m in overload!<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>My sense of smell may be highly sensitive.<span style=""> </span>The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia – I can’t sort it all out.<span style=""> </span>I am dangerously nauseated.</span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Because I am visually oriented, this may be my first sense to become over-stimulated.<span style=""> </span>The fluorescent light is not only too bright, it buzzes, and hums.<span style=""> </span>The room seems to pulsate and it hurts my eyes.<span style=""> </span>The pulsating light bounces off everything and distorts what I am seeing – the space seems to be constantly changing.<span style=""> </span>There are too many items for me to be able to focus (I may compensate with “tunnel vision”), like glares from windows, moving fans on the ceiling, and so many bodies in constant motion.<span style=""> </span>All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.<br /></span></p><span style="color: windowtext;"></span><span style="color: windowtext; font-weight: bold;"># 3:</span> <p class="MsoNormal"><span style="color: windowtext;">PLEASE REMEMBER TO DISTINGUISH BETWEEN WON’T (I CHOOSE NOT TO) AND CAN’T (I AM NOT ABLE TO).</span></p> <p class="MsoNormal"><span style="color: windowtext;"> <span style=""> </span>It isn’t that I don’t listen to instructions.<span style=""> </span>It’s that I can’t understand you.<span style=""> </span>When you call to me from across the room, this is what I hear: “(*&%^%%^&_)()_(+**(^&^”.<span style=""> </span>Instead, approach me and speak directly to me in plain words: “Please put your book in your desk, Billy.<span style=""> </span>It’s time to go to lunch.”<span style=""> </span>This tells me what you want me to do and what is going to happen next.<span style=""> </span>Now it is much easier for me to comply.<br /></span></p><span style="color: windowtext;"></span><span style="color: windowtext; font-weight: bold;"># 4:</span><span style="color: windowtext; font-weight: bold;"> </span> <p class="MsoNormal"><span style="color: windowtext;">I AM A CONCRETE THINKER.<span style=""> </span>THIS MEANS I INTERPRET LANGUAGE VERY LITERALLY.</span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>It’s very confusing for me when you say, “Hold your horses, cowboy!”<span style=""> </span>When what you really mean is, “Please stop running.”<span style=""> </span>Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is, “This will be easy for you to do.”<span style=""> </span>When you say, “It’s pouring cats and dogs”, I see pets coming out of a pitcher.<span style=""> </span>Please just tell me, “It’s raining very hard”.</span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are usually lost on me.</span></p> <p class="MsoNormal"><span style="color: windowtext;"></span><span style="font-weight: bold;"># 5:<br /></span></p><span style="color: windowtext;"></span> <p class="MsoNormal"><span style="color: windowtext;"> PLEASE BE PATIENT WITH MY LIMITED VOCABULARY.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> <span style=""> </span>It’s hard for me to tell you what I need when I don’t know the words to describe my feelings.<span style=""> </span>I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express.<span style=""> </span>Be alert for body language, withdrawal, agitation or other signs that something is wrong.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Or, there’s a flip side to this: I may sound like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age.<span style=""> </span>These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to.<span style=""> </span>They may come from books, television or the speech of other people.<span style=""> </span>It is called “echolalia”.<span style=""> </span>I don’t necessarily understand the context or the terminology I’m using.<span style=""> </span>I just know that it gets me off the hook for coming up with a reply.</span></p><span style="color: windowtext;"></span><span style="color: windowtext; font-weight: bold;"># 6:</span><span style="color: windowtext;"> </span> <p class="MsoNormal"><span style="color: windowtext;">BECAUSE LANGUAGE IS SO DIFFICULT FOR ME, I AM VERY VISUALLY ORIENTED.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Please show me how to do something rather than just telling me.<span style=""> </span>And please be prepared to show me many times.<span style=""> </span>Lots of consistent repetition helps me learn.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>A visual schedule is extremely helpful as I move through my day.<span style=""> </span>Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities and helps me manage my time and meet your expectations.<span style=""> </span><br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change.<span style=""> </span>Before I can read, I need a visual schedule with photographs or simple drawings.<span style=""> </span>As I get older, a combination of words and pictures may work, and later still, just words.</span></p> <p class="MsoNormal"><span style="color: windowtext;"></span><span style="font-weight: bold;"># 7:<br /></span></p><span style="color: windowtext;"></span> <p class="MsoNormal"><span style="color: windowtext;">PLEASE FOCUS AND BUILD ON WHAT I CAN DO RATHER THAN WHAT I CAN’T DO.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> <span style=""> </span>Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing”.<span style=""> </span>Trying anything new when I am almost sure to be met with criticism, however “constructive”, becomes something to be avoided.<span style=""> </span><b style="">Look for my strengths and you will find them.<span style=""> </span>There is more than one right way to do most things.</b></span></p> <p class="MsoNormal"><span style="color: windowtext;"></span><span style="font-weight: bold;"># 8:<br /></span></p><span style="color: windowtext;"></span> <p class="MsoNormal"><span style="color: windowtext;">HELP ME WITH SOCIAL INTERACTIONS.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> <span style=""> </span>It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation.<span style=""> </span>If you can encourage other children to invite me to join them at kickball or shooting baskets, I might be delighted to be included.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>I do best in structured play activities that have a clear beginning and end.<span style=""> </span>I don’t know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses.<span style=""> </span>For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny.<span style=""> </span>It’s that I don’t know the proper response.<span style=""> </span>Teach me to ask, “Are you okay?”</span></p> <p style="font-weight: bold;" class="MsoNormal"># 9:</p><span style="color: windowtext;"></span> <p class="MsoNormal"><span style="color: windowtext;">TRY TO IDENTIFY WHAT TRIGGERS MY MELTDOWNS.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you.<span style=""> </span>They occur because one or more of my senses has gone into overload.<span style=""> </span>If you can figure out why my meltdowns occur, they can be prevented.<span style=""> </span>Keep a log noting times, settings, people, and activities.<span style=""> </span>A patter may emerge.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> <span style=""> </span><b style="">Try to remember that all behavior is a form of communication.<span style=""> </span></b>It tells you, when my words cannot, how I perceive something that is happening in my environment.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Parents, keep this in mind as well: persistent behavior may have an underlying medical cause.<span style=""> </span>Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.</span></p> <p class="MsoNormal"><span style="color: windowtext;"></span><span style="font-weight: bold;"># 10:</span></p><span style="color: windowtext;"></span> <p class="MsoNormal"><span style="color: windowtext;"> …….PLEASE LOVE ME UNCONDITIONALLY.</span></p> <p class="MsoNormal"><span style="color: windowtext;"> <span style=""> </span>Banish thoughts like, “If he would just ----“, and “Why can’t she ----“.<span style=""> </span>You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it.<span style=""> </span><b style="">I did not choose to have autism.<span style=""> </span>But remember that it is happening to me, not you.<span style=""> </span></b>Without your support, my chances of successful, self-reliant adulthood are slim.<span style=""> </span>With your support and guidance, the possibilities are broader than you might think.<span style=""> </span><b style="">I promise you – I am worth it!</b></span></p> <p class="MsoNormal"><b style=""><span style="color: windowtext;"><br /></span></b></p> <p class="MsoNormal"><b style=""><span style="color: windowtext;"> </span></b></p> <p class="MsoNormal"><span style="color: windowtext;"><img src="file:///C:/Users/Susan/AppData/Local/Temp/msohtml1/01/clip_image011.gif" alt="and finally, three words: Patience. Patience. Patience." width="650" height="31" /></span></p> <p class="MsoNormal"><span style="color: windowtext;"> </span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>Work to view my autism as a different ability rather than a disability.<span style=""> </span>Look past what you may see as limitations and see the gifts autism has given me.<span style=""> </span>It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people?<span style=""> </span>It’s also true that I probably won’t be the next Michael Jordan.<span style=""> </span>But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein.<span style=""> </span>Or Mozart.<span style=""> </span>Or Van Gogh.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>They had autism too.<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>The answer to Alzheimer’s, the enigma of extraterrestrial life – what future achievements from today’s children with autism, children like me, lie ahead?<br /></span></p> <p class="MsoNormal"><span style="color: windowtext;"><span style=""> </span>All that I might become won’t happen without you as my foundation.<span style=""> </span>Think through some of those societal rules and if they don’t make sense for me, let them go.<span style=""> </span>Be my advocate. <span style=""> </span>Be my friend, and we’ll see just how far I can go.</span></p>Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0tag:blogger.com,1999:blog-6916793479881402946.post-62316563551272263092011-10-11T16:48:00.000-07:002011-10-12T13:40:10.711-07:00The Impact On Siblings Of Children With Autism<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwYYFWCJ7g8_4-FoW-RXmTUv8R4CT75fxBaMgnB0_ACn7_6ysUWxD6FmnyR-ZkP1PiPE6-BhK2aAiU86TwBeHbi_n9AF0I0RnJGseuqECDRaCwEcHRTWs1Mcm4eMABo2gO6ZrzyHrqHmMl/s1600/Gianni+hugging+Anthony+closeup+-+1-7-11.JPG"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 229px; height: 209px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwYYFWCJ7g8_4-FoW-RXmTUv8R4CT75fxBaMgnB0_ACn7_6ysUWxD6FmnyR-ZkP1PiPE6-BhK2aAiU86TwBeHbi_n9AF0I0RnJGseuqECDRaCwEcHRTWs1Mcm4eMABo2gO6ZrzyHrqHmMl/s320/Gianni+hugging+Anthony+closeup+-+1-7-11.JPG" alt="" id="BLOGGER_PHOTO_ID_5662706676055081250" border="0" /></a><br /><div style="text-align: left;">Within the past year my husband and I have noted a profound difference in our 9-year-old's attitudes and reactions toward his older brother's autistic behaviors. When they were younger, my boys played well together, laughed together and, for the most part, enjoyed each other's company. In short life was a tad easier.<br /></div><br />Now that my youngest is 9-years-old he is becoming more acutely aware of his brother's differences. He struggles with his repetitive behaviors. He struggles with the crazy sounds his brother makes. He struggles with Anthony's need to watch him at all times while he plays the Wii so that nothing gets scratched. And on, and on, and on...<br /><br />While these idiosyncrasies are not something we can change in Anthony, we can help our 9-year-old with coping skills. So this has now become my new pursuit. What do I do? How do I help Gianni deal with these irritants in a healthy way?<br /><br />I have assured him that while we know these things with Anthony can be very frustrating, we still love Anthony dearly. I have expressed to Gianni that I too get very depressed and angry at times about this autism that is so much a part of his big brother. But how do you help a 9-year-old, who is trying to find his own identity and place in this world, cope with the fact that he has now become the "big brother" in many ways.<br /><br />I crawled into Gianni's bed with him last night and just held him. I offered some ideas as a starting place. Maybe he could keep a journal. Writing down things that happen during the day. Maybe we could create signs for him to hold up to Anthony when Anthony is repetitive or obsessive. We have also expressed this issue with Gianni's school and they have been very gracious in allowing Gianni to see the school counselor when he needs to vent. We have asked his teacher to be mindful of his moods and emotional state each day. We are looking into dance classes for him as a release. Most importantly though, we are keeping a crazy strong sense of humor in the home.<br /><br />So, we'll keep searching and moving forward. As always, I welcome any thoughts or suggestions. Keep it positive please. :o)<br /><br />~SusanBubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0tag:blogger.com,1999:blog-6916793479881402946.post-49842364705989685302009-12-20T21:57:00.000-08:002009-12-20T23:09:57.310-08:00OBSESSIONSSo, I have to ask: has anyone out there experienced a child with autism have a lot of <span class="blsp-spelling-error" id="SPELLING_ERROR_0">OCD</span>? My little guy just turned 12-years-old, and it seems like his obsessions just continue to increase.<br /><br />I don't care that he washes his hands obsessively, dries them off in a ritualistic fashion, brushes pencil eraser shavings off in a pattern of three strokes, constantly rubs his hair and then fears baldness as a result, says the word "excuse me" until it sounds just right, BUT..........<br /><br />IT'S THE FRIENDSHIP OBSESSIONS that get me crazy!!! In his world, friendships are EVERYTHING! He will do whatever it takes to keep his friends. He has no self-worth. It's all tied up in having a friend. He is constantly checking in with people: "we're still friends right?" He's afraid to tell any of them "no", or they won't want to be friends with him anymore, and for Anthony, that would be the equivalent of death.<br /><br />My biggest fear with this is that he will especially obsess over a child who clearly and verbally has told Anthony that they don't want to be his friend. He has a new child in his class right now who is very <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">aggressively</span> against Anthony, and has even stated "I like everyone. It's you I hate". This makes Anthony want to come back even harder, and work more tirelessly to get this kid's favor. Why won't Anthony just say "forget you! who needs you!", and walk away? Why won't he heed my many prompts to find another person to play with? Why is it so important to him to change <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">someones</span> negative opinion of him to a positive one?<br /><br />To top it off, his teacher has asked for my help, but is rejecting every suggestion I have! I wanted his behaviorist to come in last Friday to observe: "NO! It's a Christmas Party and she won't get an accurate view of the problem!" I WAS THERE!! There was so much obsession going on I was close to tears!!!! I asked his afternoon aide to stand closer to Anthony while out on the playground, but because she's just an "access aide" and not a "1:1 aide" this is not possible.<br /><br />I'm working so hard here not to be a defeatist, throw my hands in the air and say "I GIVE UP!!!!"<br /><br />Here's my latest plan: Has anyone heard of the "Bill of Assertive Rights"? It's all about helping a person not to be passive or <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">aggressive</span>, but to work on learning and exercising their rights as a human being. It's about understanding what you have the right to and what you don't have the right to. For example: I have the right to my opinions, ideas and beliefs. I have a right to be happy. I have a right to tell you how I feel. I don't have a right to yell and scream at you.....and on and on.<br /><br />So first, I need to get him to understand that learning to be assertive is about empowering him to protect his rights and establish self respect. I'm going to start by using puppets and dolls to show him the differences between submissive and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">aggressive</span> behavior, and then begin to introduce the idea of assertive behavior.<br /><br />I've found an acronym K.I.T.E. This is part of assertive training for children:<br /><br />K= Know what you want<br />I=Use "I" messages vs. "You" messages (to prevent the other person from feeling attacked)<br />T=Tell others what you want firmly and repeatedly (you don't always get what you want the first time)<br />E=Expect change/Evaluate effectiveness<br /><br />This is all of course at the very early stages. I don't know if or when there will be any improvement in his emotional/self respect status, but I think it's really worth a try. With Anthony, it will definitely take a lot of repeating role play and replays, and even scripting what he might say when confronted with negative speech.<br /><br />I'll try to come back on here frequently to keep a log of our efforts.<br /><br />Wish us luck! :o)<br />SusanBubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0tag:blogger.com,1999:blog-6916793479881402946.post-58448703032395646212009-10-05T11:44:00.000-07:002009-10-05T12:21:49.881-07:00What do we do with "Middle School"?!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3z_qnJFBqSxSmlXuXW7oQWfz7pj0RUmNsc5Xkh8dHZTiBKA7g3dnN7J_2hOmCOGfesFK0ha5Cn7PceFgojXsFlxqEleCbbBYV4CEsKDeYESoo-czxLJCwVQGJSUgDWTmtePZDE2kU2h_h/s1600-h/Dr.+Seuss+Day+-+3-2-09+009.JPG"><img id="BLOGGER_PHOTO_ID_5389197506760882802" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 287px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3z_qnJFBqSxSmlXuXW7oQWfz7pj0RUmNsc5Xkh8dHZTiBKA7g3dnN7J_2hOmCOGfesFK0ha5Cn7PceFgojXsFlxqEleCbbBYV4CEsKDeYESoo-czxLJCwVQGJSUgDWTmtePZDE2kU2h_h/s320/Dr.+Seuss+Day+-+3-2-09+009.JPG" border="0" /></a><br /><div>My son Anthony is turning 12 on December 8th, and is heading fast toward Middle School, and I'm very frightened!!! He's already said that he wants to be homeschooled next year, and I'm seriously beginning to look at that as a very real option.</div><br /><div></div><br /><div>But you know what I really want to do? I want to poll the folks out in the Antelope Valley where we reside, and find out just how many parents out here of special needs children are freaking out about Middle School also. Why, you might ask? Well, 3 big reasons come to mind: 1) How will Anthony navigate 6 different teachers in 6 different classes, when he's only in 1 room for the whole day now? 2) Anthony obssesses on 1 friend. This friend has been with him for the past 2 years. How will the shock of not having him around be? 3) HORMONES!!!! It's enough for a typical child to try to make it through Middle School with their hormones raging! How is my son going to handle his hormones through his world of autism? He can barely reason with anyone now! He can barely relay to me what incidents took place in his day now! This morning his teacher told me that I would be bald by the end of Middle School. I'm not willing to accept that stress, either for him or for us, his family.</div><br /><div></div><br /><div>So again, I need to ask: How many parents in the Antelope Valley are looking at these same fears, and becoming increasingly paranoid and paralyzed by them? Right now, I'm one of those parents, but I don't want to stay that way. Right now, I want to pull the blankets over my head and just cry from exhaustion. But I can't!!!! Anthony won't benefit in any way from that response.</div><br /><div></div><br /><div>My husband and I have decided to try to see how great the need is out here for families of children with special needs to be homeschooled through Middle School and even High School. I'm just going to dive in head first and see what I can uncover. Who knows!! We may even be able to start a school that is dedicated ONLY to those children who require special learning techniques. I can't think that it's only me so "who am I"? "How can I make a change"? What I really need to ask is "how can I NOT make a change"!?</div><br /><div></div><br /><div>I'll journal my findings here so check back often. And anyone who HAS any thoughts or ideas or needs as mentioned above, don't be afraid to speak out! </div><br /><div></div><br /><div>We can do it! We HAVE to do it!</div><br /><div></div><br /><div>~ Susan</div>Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0tag:blogger.com,1999:blog-6916793479881402946.post-32058307141030595102009-09-03T23:58:00.000-07:002009-09-09T00:15:17.300-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfYGgAM0bCvtWMY8m2ZYYEwwTI_PLDCzEPqeIuSEMzYtjckF1fYAJhYchgBLQw3A4NxFdyRj0J2N2DHZtonAut5tdK2wysMVTbeUstZE40oJp5NYTpK8ZuMvdFHsrEBF_CruhSzJTmn0Vj/s1600-h/Kris+Camp+2009+033.JPG"><img id="BLOGGER_PHOTO_ID_5377505468276920658" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfYGgAM0bCvtWMY8m2ZYYEwwTI_PLDCzEPqeIuSEMzYtjckF1fYAJhYchgBLQw3A4NxFdyRj0J2N2DHZtonAut5tdK2wysMVTbeUstZE40oJp5NYTpK8ZuMvdFHsrEBF_CruhSzJTmn0Vj/s320/Kris+Camp+2009+033.JPG" border="0" /></a><br /><br /><br /><br /><br /><br /><div><span style="font-size:180%;">I found this great article on "Anger Management Techniques":</span></div><br /><br /><div></div><br /><br /><br /><div>Our children are facing much more pressing types of daily stresses than most of us ever dealt with in our childhood. Just think of the kinds of horrific images our <a href="http://www.parenthood.com/article-topics/article-topics.php?Article_ID=2348##" target="_blank">kids</a> are exposed to on the nightly news: riots, hate crimes, random shootings, bombings, kidnappings, senseless murders. We're also seeing a troubling increase in bullying, name-calling, and prejudicial slurs among school children. (Not that you would allow your little ones to watch the news...but somehow they still get the info. anyway) Do these issues affect our children? "You bet they do," says Dr. Michele Borba, author of the new book, Building Moral Intelligence: The Seven Essential Virtues that Teach Kids to Do the Right Thing (Jossey-Bass Publishers, July 2001).<br /><br />"The single greatest trend I've seen as a consultant to hundreds of schools over the past ten years," Borba says, "is the marked increase in anxiety and anger in our <a href="http://www.parenthood.com/article-topics/article-topics.php?Article_ID=2348##" target="_blank">children</a>. We shouldn't kid ourselves: the steady onslaught of stress and violence images is taking a major toll on our children's emotional and moral well-being."<br /><br />What can parents do? Teach children the critical virtue of self-control so they know how to handle their emotions appropriately when faced with frustrations. In Building Moral Intelligence, Borba gives parents the following five strategies to teach children self-control so they can calm down and learn to handle their anger.<br /><br />1. Model coolness when facing problems. Showing you can keep your cool, even in crisis, is an important way to help your children learn self-control. You send a clear message: "It may look like a crisis, but by staying cool, I'll be in a better position to solve the problem." Example is always the best teacher: "I need to take a deep breath and stay cool before I call the bank. I can't understand how my account is so overdrawn."<br /><br />2. Develop a feeling vocabulary. Many kids display aggression because they simply don’t know how to express their frustrations any other way. They need an emotion vocabulary to express how they feel, and you can help your <a href="http://www.parenthood.com/article-topics/article-topics.php?Article_ID=2348##" target="_blank">child</a> develop one by creating a "feeling word" poster together. Here are a few: angry, upset, mad, frustrated, agitated, furious, apprehensive, tense, nervous, anxious, irritated, furious, ticked off, irate, incensed. Write them on a chart, hang it up, and when your child is angry, use the words so that he can apply them to real life: "Looks like you’re really angry. Want to talk about it?" Then keep adding emotion words to the list whenever new ones come up in those great "teachable moments" that come up throughout the day.<br /><br />3. Identify anger-warning signs. Explain to your child that we all have our own little signs that warn us we’re getting angry, and that we should listen to them because they can help us stay out of trouble. Next, help your child recognize what specific warning signs she may have that tell her she’s starting to get upset. For example, "I talk louder. My cheeks get flushed. I clench my fists. My heart pounds. My mouth gets dry. I breathe faster. "Once she is aware of her signs, start pointing them out to her whenever she first starts to get frustrated: "Looks like you’re starting to get out of control." "Your hands are in a fist now. Do you feel yourself starting to get angry?" The more we help kids recognize those early warning signs when their anger is first triggered -- usually when they first show signs of tension and stress -- the better able they will be to calm themselves down and learn to regulate their own behavior.<br /><br />4. Use self-talk to stay in control. Experts suggest that another way to help kids stay in control is to teach them to say affirmations-simple, positive messages-to themselves in stressful situations. Here are a few kids that can learn: "Stop and calm down," "Stay in control," "Take a deep breath," and "I can handle this." Suggest a few phrases to your child, then have her choose the one she feels most comfortable saying; help her rehearse it a few times each day. You might post the words she chooses throughout the house as a reminder. The more your child practices the affirmation, the greater the likelihood she will use it during a difficult situation in which she needs to stay cool and in control.<br /><br />5. Teach abdominal breath control. Learning to breathe the right way -- especially in stressful situations -- is one of the most effective ways to stay in control, and so it’s an important technique to teach kids. Experts advise you to teach the relaxation method with your child sitting in a comfortable position, her back straight and pressed into a chair for support. Then show your child how to inhale slowly to a count of five ("one Mississippi, two Mississippi," and so on), pause for two counts, and then slowly breathe out the same way, again counting to five. Repeating the sequence creates maximum relaxation. The trick is to help your child learn to breathe very slowly and deeply and then practice it over and over in a calm, relaxed setting so that she can remember to use the technique during a stressful time.<br /><br />Teaching kids to use self-control is just one of the many attributes of Dr. Borba's new book. The book covers this and literally hundreds of other ideas, stories, techniques, tips, and parenting strategies to help parents build moral strength in their children. Borba's practical, step-by-step advice will guide parents along their most important role: raising good, moral human beings.</div><br /><br /><div></div><br /><div>The following video shows my 11-year-old son, Anthony who is on the spectrum, working through a friendship issue:</div><br /><div></div><div></div><div></div><br /><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwG38TLB4E_VAfdgvlDpseDWWzWXHyVbXrMwvVtxtDLGgdvaB3aRHm8J2v63aHP8906p--4B-Y_XuS3Obpung' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0tag:blogger.com,1999:blog-6916793479881402946.post-66834958171508164242009-09-01T11:58:00.000-07:002009-09-01T13:12:47.854-07:00<strong><span style="font-size:180%;">My Son Has No "Masks"</span></strong><br /><strong><span style="font-size:180%;"></span></strong><br />So to preface this post, I need to explain that I'm reading a book titled "Excuse me your life is waiting" by Lynn <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Grabhorn</span>. It teaches that we are all "magnets" either bringing negative or positive things into our lives by the feelings and energy that we're putting out. If you walk around in your daily activities with a very negative attitude and approach to things the thought is that you'll receive nothing but negative experiences. "The electromagnetic vibrations I send out bring everything into my life. Good or bad. No exceptions." So in essence, like attracts like.<br /><br />So great! So I like this idea and the first day I try it I'm really getting some positive things to come into my life through my business and with my relationships. Great! It works, and I'm only in chapter one! This is for me!<br /><br />Then it happens......as it always does. My 11-year-old son with autism announces today, as we are leaving for school, that he'd like money to go to the book fair. Sure! I want to promote reading rather than the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Wii</span> or <span class="blsp-spelling-error" id="SPELLING_ERROR_2">DS</span>, so I give him $10.00 to buy a book. He's already packed about 10 books in his backpack loading it down to the point where I wouldn't want to carry it around, but he's fine with it.<br /><br />On our drive to school he is happily discussing one of them from the back seat. It's going to be another great day I think. We're off to a good start.<br /><br />We walk up to the gate and are greeted by the usual joyful exuberance of Ms. Gray. She's so wonderful to my son. She seems to have a genuine interest in him and his well-being. She throws her arms around him in her usual upbeat manner.<br /><br />Anthony proceeds to tell Ms. Gray that he's going to buy a book at the book fair today. And that's when it all turns to poop! My stomach! It wrenches and tightens up inside of me! I know that my sweet little boy is about to explode not caring who sees! Poor Ms. Gray stands in a helpless state as her happy Anthony becomes a raging ball of fire!<br /><br />We tell Anthony that we'll go to Barnes & Noble, something I had already told him the day before, but he doesn't hear us! He throws his backpack down shouting "I'm outta here!". My mind goes through so many different emotions and fears all at once, as I try to run after him to bring him back. "Oh my God, Susan! Everyone is watching! Once again you and Anthony have become the entertainment for the group. I want to run away and hide, but I can't! I need to hold it together! I need to be the "eye in the middle of the storm". This is not a little 3-year-old whose tantrums are expected as the norm. This is an 11-year-old boy who comes up to the shoulder of my 5'6" frame! They see right through me! They know that I'm a terrible mother. That I don't have a handle on my son! I can hear the screaming internal judgments coming from my little audience! "Why can't she control her kid! My God! He's acting like a baby! Where's the discipline in that family?".<br /><br />I can't listen to that now. I've got to get <span class="blsp-spelling-error" id="SPELLING_ERROR_3">ahold</span> of Anthony and bring him back to the gate; back to his backpack he threw to the ground. I quickly tell him "Anthony, we will not be doing this today" (brilliant right?). "You will go back and pick up your backpack and get to your classroom, and we'll go to Barnes & Noble to find a book later".<br /><br />I watch him slowly walk through the gate and up the walk. All the while realizing that it's my fault. I set him up for this meltdown by not making sure the book fair was still happening. If I'd check before we left the house this morning I could have avoided our "little show".<br /><br />Then there's the pain and intense disappointment I know my son is feeling, and I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">collapse</span> into myself as I walk back to the car.<br /><br />So much for being a positive "magnet" today!<br /><br />I call the school to warn them of his turmoil, and they assure me that they know all about it! He's already <span class="blsp-spelling-error" id="SPELLING_ERROR_5">tantruming</span> again in the classroom and needs to be removed to calm him down. They don't seem happy at all. "Perfect" I think to myself. "Now I've got them angry with me as well".<br /><br />It's now 12:30 pm as I finish my thoughts here, and you know what I think?<br /><br />Who gives a damn! Who cares what the rest of the world thinks? This is my SON and this is how he expresses himself. He does not worry about the outward appearances that we all get so caught up in. I can <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">guarantee</span> you he's not sitting at his desk right now thinking "boy I wonder what people are thinking of me. I'm so embarrassed." Nope! I'll tell you what he's thinking: He's thinking about Barnes & Noble! His main objective is to GET THAT BOOK!! His heart and mind are so pure. He doesn't put on any pretenses. He doesn't wear one face in public and then another, much different one at home. He is who he is. He is "perfectly Anthony". There is no guess work with him. You will always know right where you stand with him. No guess work involved.<br /><br />He spends so much of his time trying to peer deeply into peoples eyes (literally getting close to their eyes to find the true mood of them). Why does he do this? Because the "normal" world wears so many different masks. We have masks for work. Masks for home. Masks for friends. Masks for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">acquaintances</span>.<br /><br />Anthony wears no mask. His honesty is brilliant and his heart is true. His expressions are strong and very clear to navigate.<br /><br />Today he has been MY teacher. I will take off my many masks. I will walk exposed for the world to see me in all my fears and feelings of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">inadequacies</span>. Today I will know my friends who are true. My friends who will not run and hide. Today I am purely me. Today my son will have no guess work around my feelings, and he will feel safe.<br /><br />~SusanBubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com1tag:blogger.com,1999:blog-6916793479881402946.post-78694322704155790552009-08-31T19:48:00.000-07:002009-08-31T21:29:11.471-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUC-yvhxHKK8gF98QNfoz63eUPeIm8ikJEM8_e2OI1VGyLt2juMkKcfegfmDd5pZe7qg32odz8jz09PoFejoJV03qbXLjsaqo1tfVI6-ZVeNl-ZrcAk7UubUyg1mphTMZ_AB6i-6PO5IyN/s1600-h/Apple+Picking+and+Julian+015.JPG"><img id="BLOGGER_PHOTO_ID_5376351285025256146" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 304px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUC-yvhxHKK8gF98QNfoz63eUPeIm8ikJEM8_e2OI1VGyLt2juMkKcfegfmDd5pZe7qg32odz8jz09PoFejoJV03qbXLjsaqo1tfVI6-ZVeNl-ZrcAk7UubUyg1mphTMZ_AB6i-6PO5IyN/s320/Apple+Picking+and+Julian+015.JPG" border="0" /></a><br /><div>Hello. My name is Susan and welcome to my blog! I've never had a blog before, and didn't really understand the point of one. But now that I'm working with other children with special needs, I decided to journal some of my experiences as well as impart some of my "wisdom" along the way.<br /><br />Here's a little about me:<br /><br />I have been married to my husband, Vince for almost 18 years now. He is my very best friend and someone I know I can turn to in crisis without being judged. He is quite often the sound mind in our family. I have a tendency to be more worried about things where my Vince can see it for what it is, and help me to not only except it, but find the best part of it.<br /><br />We have two little boys: Anthony our 11-year-old and Gianni our 7-year-old. When Anthony was 2 years 9 months he was diagnosed with autism. I remember being numb walking through the Kaiser Permanente parking lot back to our car. I thought autism meant you couldn’t speak! That a person would just sit and spin! My son speaks very well! I soon realized that autism is a very wide spectrum made up of a lot of developmental issues. At that time Anthony could not take having people speak in unison. He would scream, hit, pull hair or butt his own head. He was extremely intrusive. It was not enough for Anthony to sit with a person. It was almost like he had to be inside of that person. He needed to get very close to their eyes to read what was in their heart. He lacked understanding of others’ feelings. If he didn’t feel the pain, you surely did not feel it either. He had no “turn-off” button. Sleep did not come for him in the evening. When he did finally get to sleep, he would wake up frequently in the night screaming and thrashing, and we would need to go in and calm him and get him back to sleep. Anthony would carry a bin of toys with him everywhere (literally everywhere). If any one of these toys was missing he would rage in a panic until the toy was found. We attempted to have him in 3 different preschools, but was kicked out of each one. The last one said that they handled children with his “undiagnosed” issues all the time, but they still sent him home. They took me to their office and suggested that he be tested by the school district which we did. We then took him to Kaiser Permanente where he was given is diagnosis of autism. From there we hooked up with the Regional Center who did their own testing and agreed with Kaiser Permanente’s diagnosis. The first thing we learned of was “respite”! A way to have a break, know that our son was in good hands with a person who would be patient with Anthony. At first Anthony would scream for hours when we were gone. But gradually he began to except it and even tell us on occasion to have a good time, albeit through tears. We then put Anthony in special day classes at Santa Clarita Elementary. This was a wonderful time for us as we began to grow as a family navigating the autism world. Anthony is now 11-years-old and is absolutely amazing. He has come very far. He still carries his bin of toys around with him, and keeps them on his bed when he sleeps. If a toy is lost now he will still panic, but tries his very best to keep it in check while we search for the toy. At this point in Anthony’s life, he struggles with friendships (being obsessive with an individual person), anxieties, focus and temper tantrums. But it should be noted that has come so far from even one year ago. He has an amazingly huge heart! He has concern for others when he feels he may have hurt them. He is developing a tremendous wit and has the most contagious laugh you will ever encounter! We can’t imagine life without this little person and feel we have learned so much from him!<br /><br />Our 7-year-old Gianni was born on October 27, 2001. When we first conceived Gianni, we were very excited, but also secretly concerned. Would we have another child with autism? How would we handle having 2 children on the spectrum? It was so delightful to watch the 2 boys play together and to watch Anthony even act as big brother to his baby brother on occasion. We realized that at 3-years-old Gianni was to remain very neurotypical. Unlike his big brother, Gianni was always able to recover from disappointments or frustrations with such ease! He was navigating this world beautifully at such an early age. We found ourselves saying “so this is how other kids are!”. Gianni has always been very creative. One of his favorite activities is to sit with “Play-dough”. He can sit for hours creating things with “Play-dough” and then having his creations involved in very intense play with some of the funniest sounds! He’s very passionate in all his play. He plays very hard. We are forever having to collect all of the families blankets back out of the playroom at the end of the day after Gianni has used them all to build his elaborate forts! We will hear him frequently up in the playroom engaged in very intensive battles with his toys. It’s the best sound to hear. Sometimes my husband and I will just be laughing downstairs as we listen. Gianni also loves “dress up”. He has many costumes and has even created is own “nerdy” character whom he’s named “Periwinkle”. My husband and I were amazed at his detail both with his costuming and the personality he gave this character. He has become a huge fan of magic after watching his daddy perform. He has recently auditioned for the Talent Show at Quartz Hill Elementary and was accepted to participate in the show. It seems to us that, at an early age, Gianni possesses a very good understanding of comedic timing. He may end up being in theatre one day. He and daddy are currently building a Go-Kart and just having an amazing time working together.<br /><br />Both our boys have their own unique and very special relationship with their father. Vince calls one “buddy” and the other “pal”, and they relish their nicknames and their place in their dad’s heart. I love seeing them together, and feel very blessed every time Vince says “hey, get the boys ready, I’ll be home soon. We’re going to go here or there”. To have a father for my children who wants to be part of their lives without being directed to do so, is huge to me!<br /><br />Like any family’s, our day can be intensely crazy. It can be full of major disappointments and helping each other through anger or sadness. Or it can be very funny with laughter and rolling around on the floor. The key though is that at the end of the day, we know we’ll have our bedtime stories, songs and what daddy has dubbed “cheer” time. “Cheer” time is where they each get a little cup of juice or water and they cheer to each other’s day. It used to be me who handled the bedtime routine, but it has slowly become a time for daddy and the boys to bond. At first I felt guilty for not being the one to do this. I’m their mom! I should be putting them down! Then I asked myself “Why”? Why can’t they get the same love and bonding from him as well? So I’ve backed off from those fears and just relish in listening from a distance. It isn’t that I can’t go in and be part of it, but I don’t want to take away from this time for them.<br /><br />I could go on and on, and turn this into a book, but I’ll stop here. Who knows. Maybe someday I WILL write a book!<br /><br />Check back with me from time to time. I'll be posting new adventures with Anthony as we navigate this amazing world of Autism. :o)</div>Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0tag:blogger.com,1999:blog-6916793479881402946.post-8611247016929581462009-08-31T18:18:00.000-07:002009-08-31T22:19:08.224-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWdtSKWLV-6yAky-l2UDOE-TOwOgMKVWxB11Lrvde6eTToX0VpvRNVeahM7WSnV_mbi1M3tiS1ALR4OKQkrP5aiUuQGHXe4_uJeu3-gm232Bn-bUglA9Vrw__3Fq8wvtUWv7OinVNm1Q3X/s1600-h/Trampoline+fun+and+Magic+Mountain+7-08+051.JPG"><img id="BLOGGER_PHOTO_ID_5376364039417042482" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 280px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWdtSKWLV-6yAky-l2UDOE-TOwOgMKVWxB11Lrvde6eTToX0VpvRNVeahM7WSnV_mbi1M3tiS1ALR4OKQkrP5aiUuQGHXe4_uJeu3-gm232Bn-bUglA9Vrw__3Fq8wvtUWv7OinVNm1Q3X/s320/Trampoline+fun+and+Magic+Mountain+7-08+051.JPG" border="0" /></a><br /><div>As parents of a child with developmental disabilities we have found it increasingly difficult to find strong respite care for our son. We wanted a group that would not only provide good care for him while we were gone, but that would implement, successfully, the different strategies useful in achieving some of the goals and dreams we have for our little boy. As parents, we know that the most normal, independent, and least restrictive residential environment for any young person is with their own family. We also know that there will be times when family members need relief from the daily responsibility of caring for a family member with a developmental disability. When there is no time for yourself as the caregiver, and no one to turn to for assistance in the event of an emergency, frustration, fatigue and/or isolation can begin to take over. Having temporary relief from the responsibilities of caring for an individual with developmental disabilities can allow families to spend some relaxed time away from home, make and keep appointments, attend meetings, or take short vacations.<br /><div><div><div><br />Having our own special needs child, we know all too well, the need for parents to have a time to regroup. A chance to gain new strengths or just take your own "time out"! We also know all too well how important it is that the person we entrust our son to is not just sitting there like a "lump on a log" waiting for us to return. We want our children engaged. We want our children to have positive and loving interaction, so that his time away from us is meaningful and uplifting.<br />For these reasons we decided to create our own respite services program, and are very pleased to be able to offer it to you and your family! Our children are our future and we believe they deserve our very best to help them in their journey!<br /></div><div></div><br /><div>~Vince and Susan</div></div></div></div>Bubbles, Bubbles, Bubbles!http://www.blogger.com/profile/03778104527107741747noreply@blogger.com0