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Tuesday 21 Nov 2017

April is Autism Awareness Month Enter Our Contest


As you all know, April 1st (and 2nd) is World Autism Day and then it is National Autism Awareness Month for the remainder of April! Help us spread the word about autism by “liking” us on Facebook and participating in our contest (see details below)!

The CONTEST

This year’s contest is called “My Wish for the Future”. This is a story submission contest open to everyone who is affected by autism in any way, shape or form. We want to hear from YOU!! Are you an individual with autism? A parent? A sibling? A family member? A grandparent? A teacher? A professional? Whoever you are, we and everyone else in the Autism Community want to hear your story! Here are the contest specifics:

Who can participate?
Any one who is directly impacted or involved in the lives of those with autism

What does my story need to be about?
Stories need to be about your experiences with autism to date and your WISH for the future.

How long does my story need to be?
Only stories 500 and MORE will be eligible for the drawing at the end of the month. However, you can submit your story of fewer than 500 words if you simply want to share your story and your wish for the future with the community!!

How is the winner selected?
All entrants will be entered into a random drawing at the end of the month.

What is the prize?
The winner of the drawing will receive a copy of Boardmaker Studio, Mayer-Johnson’s newest software! a $400 value!!!

What is the deadline for submissions?
Stories need to be submitted by midnight (PST) April 30, 2011.

10 Comments

  1. D Marie says:

    A Tale of March Madness- How Basketball Rescued My Autistic Son

    Shortly before his 5th birthday, my son told me that when he “grewed up” he was going to play ball at Duke University. He would stand in front of the TV and jump up and down for hours while he watched college basketball. He would read (yes, at 5) the ESPN Sports Almanac and memorize every record and every Final Four champion since 1939. He was diagnosed with autism before he was 2. I knew in my heart that he had the disorder. Despite assurances from our pediatrician, my parents and family friends, I could connect the dots. As a physical therapist, I had completed my internship at a local, prestigious children’s hospital, and had treated many young children with “severe developmental delays”. In the 70’s, the diagnosis of autism did not exist as we know it today, but the patterns were nauseatingly familiar; non-verbal and uncommunicative, repetitive behaviors, self-stimulation, hyperfocus in some areas, an inability to engage in play, and no eye contact. At 14 months, I had my baby evaluated, but knew the diagnosis before I heard it. The dreaded A word. In the early 1990’s, autism still seemed akin to a death sentence. But I would “handle” it. After all, I had successfully treated professional hockey players, Division I athletes and everything in between. Certainly I could treat and manage my own toddler’s rehabilitation… We began a home regime of special education, speech, occupational and physical therapy- the full court press. Unfortunately, my son was unimpressed and results were scant. When not in therapy, he was jumping on the bed for hours a day, or flicking the lights in his room on and off repetitively, or inserting his video tapes into the VCR only to eject them seconds later. He could not engage in any activity or play with his older brother, and he had no playmates. By age 3, despite an impressive treatment schedule, there had been no significant gains made. By chance, I bought him his first Nerf basketball set for his birthday (mainly because I was running out of ideas for safe, engaging toys). He now was shooting free throws 4 or 5 hours a day. When he was around other children, he still wasn’t talking, but was playing with his now requisite basketball. This was far more socially acceptable than standing in the corner jumping up and down continuously. (Speaking of which, his toe walking and jumping in place was aiding his jump shot.) As he began school, the size of his basketball collection grew. When he attended a local after school SCORE! learning program with his brother, he quickly realized that a good score on his computer meant several chances at a free throw. Forget the prizes, he wanted the hoop! By the end of that year, at 5 years old, he had the most ribbons on the wall for scoring the most 3 pointers, and became an amazing reader in the process. Needless to say, we signed him up for his first basketball team shortly thereafter; A TEAM- with other children of the same age. As the years passed, his other abilities truly blossomed, and many of his sensory peculiarities diminished. Though true friendships remained elusive, he could be socially accepted once he stepped onto the court. He is now 17, and is part of student government, a member of a Youth Action Board for his special education pre-school, and has straight A’s. When he is studying for an important test (like the SAT) he still burns off anxiety and maintains focus by shooting at the Nerf basketball hoop ever-present in his room. Last week, his Varsity team won the State Basketball Championship.
    Thank you, basketball. You pulled my son into life with the living. He’s going to the dance, and yes, he will be applying to Duke University in the fall. Coach K, watch out. He’s bringing his Nerf ball with him…

  2. Shannon R Mason says:

    My mother, my younger brother, and I were visiting at my grandparents’ house. Travis, my older brother, was eight at the time (two years older than I was). We got along as a normal brother and sister do, squabbling enemies at times and inseparable playmates at others. He and my father had gone home earlier that day for a little male bonding. The newest member of the family was Brandon. I adore him. I used to feel as if I knew exactly what he was feeling. We had a secret connection and understanding of one another. I was always able to calm him down, or make him laugh, and when he cried so did I, whether I was aware of it or not. But all of that ended one spring afternoon as the result of an event that would change the lives of my family and our friends forever.
    It was a nice day. Jacket weather, but pleasant nonetheless. My Grandfather sat on the cement steps that lead to his porch holding Brandon in his arms. I was situated on the railing across from him. We were chatting about school and other unimportant things that six year olds are interested in as I watched a beetle slowly crawl up my jacket. Suddenly I saw the color drain from Grandpa’s face. Brandon began to shake. His body convulsed and shook like a tuning fork that has just been struck.
    “Debbie! Arletta!”
    My Grandfather yelled to my mother and his wife in a constricted voice. My mother opened the door and looked at my brother in shock. The color drained from her face. I felt a freight train of fear collide with my gut as my small brain began to rap around the idea that something was very wrong.
    “Debbie, call the hospital. I’ve got him just go,” my Grandpa instructed in a now gruff and authoritative voice as he responded to the look of helplessness and bewilderment that infected the feminine features of my mother’s face.
    I stood in the doorway to my Grandparents’ dinning room, confused and frightened, as I watched my mother’s tear stained face recount the events into the phone. I didn’t know what to do. I had never seen my mother cry and no one had so much as acknowledged my existence since everything began. I stood not knowing if my little brother was ok, or even if he was still alive. I was too terrified to cry. I just stood and stared.
    My mother hung up the phone and turned to my Grandparents as they hovered over Brandon. She had that look that people get when they are watching something but aren’t really seeing.
    “They think Brandon had a seizure. The doctor told me not to bring him to the hospital unless it happens again.” Her monotone voice and unseeing eyes conveyed her continued anxiety and hesitation.
    I was told to get into the van and sit next to Brandon. I was to “make sure that he was ok.” At this point selfish thoughts that only a child would entertain at a time like that began to creep into my head.
    The doctors said that he is ok; we aren’t even taking him to the hospital. I want to sit in the front seat. I never get to sit in the front. If Travis were here you’d let him sit in the front. You wouldn’t be ignoring him either.
    Nonetheless I never had the courage to argue with my mother so I climbed into the middle seat next to Brandon and sulked in silence. A few yards from my driveway Brandon started to shake again. I screamed for my mother and started sobbing. She pulled the car over and came back to hold my brother until his shaking subsided. Once the convulsions had ended my mother drove the rest of the way home. No words were spoken until she had corralled us into the house and dialed the phone.
    She called the hospital back and told them that she was bringing her son in. I can still remember her tone of voice, it was the one that says “you bastards didn’t let me bring him in the first time I told you that something was wrong. I’ll be damned if I listen to you again!”
    By this time my father had figured out that something was amiss and looked at me with wondering eyes. I shrugged and turned my attention back to my mother. Why should I tell him what’s going on? I was there and no one explained it to me!
    After she had made two more phone calls my mother explained the situation to my dad. My parents took Brandon to the hospital leaving Travis and I in the care of my aunt.
    Several days later I again stood in my Grandparent’s kitchen, peering around the counter, as I was still too short to see over it. My mother was holding Brandon in her arms as tears slowly made their way down her face. By now I had seen my mother cry a lot but it still scared me and I still wasn’t sure what was happening.
    My mother told my Grandmother what had happened after they had left my house. Brandon was flown to Upstate Medical Center in Syracuse NY to be seen by a neurologist. At that point it was determined that the brother that I so loved and adored, the one who shared my every emotion was severely autistic. Brandon also suffers from mental retardation and epilepsy (the culprit of his earlier tremors).
    My aunt had explained all of this too Travis and me the night before though I still had no idea what any of it met. All I knew was that I was confused and frightened. For the first time in my life I couldn’t identify with what Brandon was feeling. I didn’t understand why the doctors just couldn’t “fix” him.
    At that point I didn’t realize how important that day would be to the rest of my life. Brandon’s “gift” has shaped my personality, my maturity, my love, and strive for knowledge. Throughout my childhood my nickname was princess free spirit. I spent my days running through the hayfields behind my house, staining my cloths with grass and dandelions and reveling in my freedom. I was never one to admit that I needed help and I certainly never asked for it. No, I was perfectly content to do things the “hard way” so long as I was able to do them myself.
    One of the greatest accomplishments in my life has been speaking out about autism and how it has affected my family and me. I have continued to succeed in public speaking and am now hired to speak about autism and a wide variety of other topics. I gave a speech on autism at Purdue University the summer of my sophomore year of high school. As I stood in the auditorium and looked out at the 6,623 faces in the crowd I knew that I had successfully become an independent woman who could face the world on her own. I had found a way to continue to be connected to Brandon and to give him a voice. Although many see autism as a misfortune, I don’t perceive it that way. I would give anything to see Brandon live a normal life, with normal intelligence and social skills, but I would never give up what he has taught me in every moment that he has touched my life.

  3. Shannon R Mason says:

    She gave. She gave us her time, she gave us her spirit, she gave us her strength, she gave us her dreams, she gave us hope. To be a mother has to be one of the most unselfish acts that any person can undertake. A mother spends years of her life investing in the growth of her children- children who aren’t always as thankful for her sacrifices as they should be. There are so many hats that a mother must wear and so many things that she has to be willing to share…and the great irony of it all is that if she is successful her children will grow up and “leave” her. The things that are so amazing about my mother aren’t the positive qualities that she has- though they are boundless- the magnificent things about my mother are those things which she does without. My mother has spent her life at the beck and call of her children; she has always seen to it that we would never experience a missed opportunity. My mother gave everything to my two brothers and me. She was a nursery school teacher, Sunday school teacher, Girl Scout leader, soccer coach, community volunteer……. She came to every one of our games, speeches, concerts, plays, proms, graduations…. Her response time to a cry for help would put Superman to shame. My mother and father have been married for 35 years. In those years my mother has put a full home cooked meal on our table every night and we have eaten together as a family- without the television on.
    Last year I was able to be alone with my mother for the first time in twenty years. You see in addition to being a model mother, she has also spent the last twenty one years of her life caring for my younger brother, who we affectionately call burdock as he is never (and I mean this literally) more than a few feet away from my mom. He suffers from sever autism compounded by profound learning disabilities.
    I am at an age now where I fully recognize my mom’s flaws and celebrate her humanity. I love and respect her in a way that only a daughter can. There is nothing that I can say to express to you how special this woman is- you would have to see for yourself. I know that there are families that face a wide variety of challenges and each and every one of them should be commended; in fact every parent who does their best to give their children the best possible life should be recognized for their selfless acts. I am sure that there are hundreds of thousands of moms and dads that are fighting for their children everyday and would do anything to see their child happy…I am lucky enough to have two of those parents and the only thing that I could ever ask for is the chance to show them how much I love them and how truly phenomenal they are. In a world where young women are struggling to find positive female role models I have been blessed. My mother is the embodiment of unconditional love and devotion and I will never be able to thank her enough…..she gives selflessly.

  4. Zidlow Marx says:

    Excerpt from “Ausim,Seriously Funny by Zidlow Marx

    “The Appropriate Crowd”

    Don’t you just love the sector in our population that thinks, and just knows, they could handle a situation better or smarter or “more appropriately” than you or anybody else?Elijah has Asperger’s syndrome, a developmental disorder on the autism spectrum. This affliction causes him to have some physical ticks and verbal outbursts that he simply can’t help.One of our favorite comments from these birdbrains is, “Can’t you just tell him to stop?” These types of comments never ceases to amaze us. We can’t believe that they don’t even want to try to hide their stupidity and insensitivity.
    Publicly tattooing themselves as ignorant and contemptible hurts all parties. What is really going on is that these people are in such fear of a disability that the way they deal with it is by brushing you aside as quickly as possible, while implying, “I’m sure these people did something wrong to be in this situation.” This “blame the victim” game is old and it’s the quickest way of admitting you’re convolution deficient and your heart is in need of an angioplasty.A couple of Einsteins occasionally offer the suggestion that giving him more discipline—yes, discipline—will cure him. After my desire to bitch-slap them passes, I explain to them that the leg irons, flogging, and thumbscrews didn’t work. I then turn to Elijah and say, “Elijah, please stop that,” at which point he flaps his arms harder, and screams at the appropriate crowd, “Cretins!”I just shrug my shoulders and say, “He says what’s on his mind; I better take him home and try waterboarding.” Then we promptly excuse ourselves and split.By the way, Eli knows when I say, “Elijah, please stop that,” it’s code for, “Tell them how you really feel, and a pepperoni pizza is coming your way.” It’s a great system and everyone makes out. I get to do something engaging, our “acquaintances” are now free to feed on each other – not us – and Eli gets his heart’s desire – good pizza!Elijah typically takes in the atmosphere and tone of a social interaction and comments on it with either a one-word summation or a cartoon/movie quote that completely fits the situation.

  5. Jennifer H. Garrison says:

    MY WISH FOR THE FUTURE
    A couple of years ago, as my son was exhibiting the insidious onset of the signs of Autism at 2 years of age, I was busy in graduate school readying myself for a profession which supported people with all types of communication disorders. Who would I work with: children or adults? Which disorders, if any, should I concentrate on specializing in: fluency problems, motor speech issues, etc.? Little did I know how much one little boy would ultimately narrow my focus and provide me with my calling. As I’ve gone through my coursework and clinicals, the subjects of many of them hitting way too close to home, I’ve had my sights aimed at the future…for my son and anyone like him. My son, who has a extremely difficult time with verbal speech, communicates volumes to me. I love him for this gift that he has; he can speak by simply looking at me. It’s a type of communication that is pure, with no insinuations and no deceit. I think many people with Autism have this gift…and, yes: it IS a gift. “But how is it fair that these people cannot verbalize their thoughts and feelings and contribute?” you ask. I say that it is up to US to provide a way for them and, along with a way of communicating, to add a dose of dignity and respect for the gifts they have and the crosses they bear. Sometimes it seems that the neurotypical people are the ones who have the “problem” nowadays. We refuse to look past the verbal speech that we are used to, and we dismiss alternative ways of thinking. In the past I would approach people with Autism and even other conditions with neutral and ambiguous feelings. Because of my son, however, I now look at the people I come across with wonder and love…they are part of the newest civil rights battle of our age. It’s not about skin color this time, but about brain circuitry.

    My wish for the future is for all people to see the GIFTS that people with Autism have and to help them to reveal those to the world. This could mean to find a way for the person to communicate, to give them a focus for their true talents, to provide them with whatever treatment they need (you hear me, insurance companies???), or to simply give them a CHOICE in their daily lives. Any of these things would supply them with the human rights we all should have: a right to live, a life with self-determination, a life with dignity, and respect from others. My wish for the future is for people to feel the way I feel when they see someone who has Autism: not as disabled, broken, cognitively useless people, but as people with a treasure built into their condition….we just need to dig a bit to unearth it. As my son continues to grow and becomes the beautiful young man I know he will be, I will keep digging because he is so worth it. They all are!!

  6. Erin says:

    If there is one thing I’d like you to know about me, it’s that I have Asperger’s Syndrome. I’m a 21 (soon to be 22) year-old woman, and life can be a struggle sometimes. I wasn’t diagnosed until I was in 11th grade. It took this long probably because I was a female, and I got good grades. However, school was very rough, especially since it seemed to me like not much was known about Asperger’s Syndrome at the time when I was there. I nearly had to drop out in 10th grade, due to overwhelming stress. But with the help of the tiny support group I had back then (Thank you Mom and Dad!), I was able to transfer to a school better fit for me, and even graduate. Unfortunately, college still isn’t much of an option, because there aren’t very many ways the school system can help me right now, and also because I’ve developed Post Traumatic Stress Disorder from my experience with school. But I’m going to try to find a job, and hopefully even move out into my own place! (Eventually) My true passion is with animals, especially dogs. To me, animals are ranked higher than people, because the animals have never let me down.
    Asperger’s Syndrome makes life interesting, for sure. I am very hypersensitive to the world around me. I can hear every footstep in my house, or that high tone an old computer makes. I can smell cigarette smoke from a mile away (YUCK!), or a Sharpie marker on a piece of paper after its been sitting out for days. I can feel that one little stray hair tickling my shoulder, or that tag from my shirt. I can see the light reflecting off of ice-skates, and I can barely keep my eyes open sometimes when it’s sunny! I’ve also learned many ways to cope though. I have a sound soother that I listen to, to cancel out other sounds that could hurt my ears (like the vacuum cleaner!) I use my shirt to cover my nose when something smells bad, and put the air in my car on “recycle” so I don’t get distracted from cigarette smoke when I drive. I can cut my hair short, and cut off the tags, and try to find more comfortable things to wear. And when things get too overwhelming visually, I put on my sunglasses, and I feel much more comfortable in my own little visual space.
    I want people to know that an Autism Spectrum Disorder is just another way of living life. I am like a puzzle piece: I may not fit in where you want me to, but in the end, I’m still important! Please try to accept that these sensations are real for me, and that I’m not over-reacting. I always try to be that person that I’d want for myself, and so often in life, I have needed that person. If I am ever rude, I apologize. I misunderstand things, but really, don’t we all?

  7. “Wash your hands for dinner!”

    Drew comes toward the sink and then takes a step back.

    “Mom. I can’t.”

    I look at the faucet, covered in soap suds.

    “Hang on,” I say, liberally dousing it with water until the bubbles are completely gone. “There you go.”

    He steps up to the sink and washes his hands.

    Bubbles. He can’t even stand the word. The sight of them makes his stomach twist. He forces himself to tolerate hand soap, but prefers hand sanitizers that don’t create suds. I shudder to think about how he washes his hair – or doesn’t. There was a time when I would have tried to understand – tried to rationalize it for him. They’re just bubbles. He likes clean things – what’s cleaner than a soap bubble?

    I don’t do that anymore. I’ve learned that sometimes it’s best to jump on the spectrum with him.

    How can I say that? Isn’t drawing him toward a typical life view the best thing for a kid who’s so “high” on the spectrum that his diagnosing doctor – ironically – described him as “just inside the bubble?”

    Yes and No. Yes and KNOW. I’m learning to walk that line; I’m learning to know when to accept and when to push. Desensitizing him to sensory problems works best very slowly, at his own pace – not mine. I’m learning to accept that I’ll never do it perfectly – that I’ll have good days and bad days. Just like him.

    With autism, we live in two realities, with two cultures in our house. I can’t let go of one, even while I cling to another. I have always known this by instinct, but didn’t know how to put it into perspective until recently, when I was inspired in an unlikely way.

    My niece, Lisi, became an American citizen just over a year ago. It happened the moment she passed through customs at San Francisco International Airport. No fanfare; no oath. Still, the core of my patriotic heart sings anthems when I imagine that moment. My sister put her on the phone with me that day. I cried as I listened to her sweet voice, bubbling over the line in rapid-fire Chinese. Already I loved her. Already she was my family.

    My sister and brother-in-law spent two weeks in China finalizing the adoption that had taken almost two years to achieve. On Gotcha Day and at the courthouse, there was fanfare; there were oaths. A week before Lisi became an American, her parents became Chinese. It’s a custom in China: if you claim one of their children as your own, the Chinese people claim you too.

    That custom is more than just a nice sentiment; it’s an overt acknowledgement of something that happens in the heart of a parent. Lisi will grow up as American as you and I. She’ll wear American clothes and speak English with an American accent. She’ll wave a flag on the Fourth of July, learn her states, learn her presidents.

    She’ll also always be Chinese.

    In a perfect society, paradoxes of race and culture would never create problems, only opportunity. But we see it all the time: kids who don’t feel like they fit into our world, kids who fit into two worlds. Sometimes we feel those difficulties almost by instinct. Sometimes we don’t.

    Imagine that Lisi is with her mom at a park shortly after arriving from China. She’s playing in the sandbox with another child, whose mother comes to sit by my sister on a bench. After a few minutes of listening to Lisi chatter happily in Chinese, the mother turns to my sister as says: “Maybe she should make more of an effort to speak English.”

    That wouldn’t happen. (You’re thinking it; I’m saying it.)

    Here’s what would happen, though; here’s the kind of thing that HAS happened:

    I’m at a social gathering and my son is standing awkwardly to the side while others his age joke and laugh. They run and toss a Frisbee, stop to pet a dog, grab a soda, talk to their parents and then rejoin the conversation of their peers, never out of step. I’m talking to another mother and make a casual comment, wishing my son could join in their fun. “Maybe he could make more of an effort,” she says.

    She might as well suggest that he speak Chinese.

    People don’t mean any harm, but sometimes they forget. Drew looks typical. I hear it so often: I can’t even tell he has autism!

    It’s a blessing – I never forget that. He’s likely to function in our world without as many struggles and obstacles as he might have had. He’s likely to communicate with people who think he’s just slightly different, never suspecting there’s a label, a diagnosis for what they see.

    But there are also those who KNOW he has autism, but expect him to act like he doesn’t. They’re confused by his intelligence. They’re confused by his ability to talk knowledgably about favorite topics. They’re confused because he’s done such a great job of overcoming fears, learning to deal with the unexpected – fire drills, changes in routines, random noises, unfamiliar flavors.

    He does so well, that people forget – and then they get frustrated when his autism starts showing. They get frustrated when he doesn’t move quickly enough, when he gets anxious, when he has to be told twice. They get frustrated when he doesn’t remember, or when he remembers too well. They get frustrated because he’s so honest – (all I can say is, if you ask someone with autism a question, don’t expect him to tell you anything other than the truth!) People get frustrated when he doesn’t laugh at their jokes, when he doesn’t like their nicknames or their relentless teasing. They don’t like it when they ask: “How are you?” and he doesn’t respond quickly enough. They think he should know how to shake hands, maintain eye contact, catch a football, ride a bike. They know he has autism, but they have a hard time remembering that it’s a real thing – not just a label.

    It breaks my heart. My son tries so hard every day and he’s still getting, “No, you’re not quite normal enough.”

    I can’t imagine someone asking Lisi to abandon her race – to completely reject her culture and pretend to be white. And the thought of someone treating her as if she’s somehow less of an American because of her race or culture also makes me livid. I know her parents feel the same way.

    But will Lisi always understand this fierce loyalty we feel toward her – will she ever doubt that she is wholly Chinese and wholly American – and that this is just how it should be?

    I hope the fact that her parents are Chinese now too helps her understand how fully and unconditional their connection is.

    And that is why I’m jumping on the spectrum. I’m a typical parent – and I want my son to live as much of his reality as possible in a typical world. I’ll hold the bar as high as I can and I’ll be a patient cheerleader.

    But he’s always going to have autism – and so I’ve decided that I am going to be autistic too. I’m never going to demand that he be what he can’t. I’m never going to ask him to pretend, or hide his personality quirks.

    I will be honest and I will let my own personality quirks show. I will not pretend to be something I’m not. I will learn to back off when he needs space but I will always be there when he needs me. Autism will never embarrass me.

    I will be his advocate. I will be a fierce mama bear. And I will be on the spectrum with him for as long as I live.

    My hope for the future is that people see the diversity of autism and accept it as a culture that is inextricably intertwined with our community at large. My hope is that all parents will jump on the spectrum too — that if our children can not collectively raise their voices, we will raise ours for them.

  8. What I Want For the Future

    May first has always been my favorite day of the year. To me it symbolizes slamming the door on snow, bitter wind, scraping car windows, and having to bundle up just to grab the newspaper. For my son Jonah, it means he’s starting to ask for “waterfall” – one of the few words he signs while speaking, tapping three fingers of one hand in a W against his chin. He means he wants to visit his favorite waterfalls about 40 minutes away. The loudly-shushing water white noise is an aural backdrop he loves. He feels free there. He’s gleeful and adventurous, alone, laughing and singing to the music of the water’s rush. And I have no doubt if we allowed him, he’d climb the falls, monkey-like, to the top without a stumble AND faster than most grown folk. He’s agile and elfin, confident and inherently fearless. He has autism and has just turned nine.

    When I take him to the falls now it’ll be from a new perspective, because we’ll be placing him in a residential educational school some time this year. He’s violently aggressive so much of the time that his teachers, doctors, and eventually, we, have come to understand that he needs the 24-7 routine and consistency of a home with professionals skilled in the care and treatment of kids with severe behaviors. Believe me, if you had asked me five years ago if I’d consider placing Jonah in an institution of any kind, I’d have been almost insulted. In fact, in the back of my mind I had wondered just what kind of people dropped their child off to live somewhere else –simply because the kid had autism, it seemed to me.

    I know the moral usually comes at the end, but the universe is obviously nudging me right in the middle of Jonah’s story with a message: don’t judge people. I can’t deny this truth and I can’t ignore its importance. When I was single and childless, I often rolled my eyes at parents in the grocery store with their screaming, boogery kids flailing on the floor. “Nice parenting skills,” I inwardly scoffed with the arrogance of youth. Flash forward ten years and I was the parent with the screaming, flailing kid. What goes around comes around.

    You’d think I’d have learned it then, the lesson about judging people. But no. Once Jonah was diagnosed, there was plenty more to judge. You probably already know this but we really don’t have autism figured out, so there are all kinds of different theories and treatments – innumerable ways to absorb and understand the diagnosis, mourn the child you thought you had, celebrate the one you do have, and manage the symptoms. So it’s easy for one parent of a child with autism to judge another. There are so many manifestations of kids on the autism spectrum that it leaves lots of room for criticism. I think really it’s mostly fear. Am I doing this right? What’s the best thing to do? How are THEY doing it?

    I mostly avoided discussion about treatments and theories, yet still I held myself separate from those families who placed their child. “What does it take for people to put their child in one of these places?” I’d think. “Who does such a thing?” Now I understand why. Now I know who.

    When Jonah was born, I remember I wouldn’t let them take him away from my bed – not to the nursery, not anywhere. When they needed to weigh or monitor him, I walked along next to his rolling bin and stood over the nurses until they handed him back to me.

    Now that we are placing Jonah in a residential educational school, I think perhaps there was a reason I clung to him like a burr when he was born. I think maybe it was because something deep inside my heart was telling me I wouldn’t be able to hold on to him for long – that we would lose him, in a sense…that he would have to go away.

    And just like the day he was born, I don’t want to let go of my little baby boy.

    So I’m definitely ditching the judgment. “Be kind, for everyone is fighting a hard battle.” There are arguments about who said it but I love that quote. What I want for the future is for me to remember it – for us all to remember it – for people to be kinder to one another – to realize that everyone has pain, problems, heartache and anguish, but we can make the world a better place, even if it’s just one person at a time.

    Amy Wink Krebs
    “Normal is a Dryer Setting”

    (I do not use face book so I could not “like” you – I’m sorry!)

  9. Jennifer I says:

    My son started with an aggression problem. We took him to his pediatrician for suggestions and was told to do what we were already doing. They had no help and suggested a psychiatrist. We took my five year old to a psychiatrist wondering what the heck was wrong with our baby. Why was he so violent?

    The doctor diagnosed him with anxiety and gave us meds. He waivered throughout the summer, but was doing better. Then he started Kindergarten.

    The stress of the environment, the demands, the other children were too much for him. He started the vocalizations. He would fidget. He begged us for his own bedroom because his brother is afraid of the dark and likes to sing himself to sleep, all of which agitated him more.

    His quirks of world’s policeman, lining up toys end to end, only playing with red legos, insisting on a schedule with no deviations, fidgeting, being literal (we said the Easter Bunny threw up on the table and he ran over and asked where), all got worse.

    It was then that he was diagnosed with Aspergers. I had hoped with the diagnosis, we could figure out how to help him, get an IEP set up for him, and things would get better. We have learned which battles not to fight, we prepare and double prepare him for changes in routine, we have an IEP set up for him.

    Things have gotten a bit better, but it’s like a moving target. I feel like I’m always chasing behind him trying to catch up… that I’m never going to be the mother he needs. How do I get him back under control when spring break comes, ruins his routine, agitates him, he acts out aggressively, and now he’s suspended from Kindergarten at 6 years old?!!

    Add that to the fact he’s five, and growing quickly and metabolizing the medicine he gets quickly and we’re constantly having to up the dosage to keep him at the same level…and it feels like a losing battle. Do you know how many growth spurts children have?? We’ve had to increase his dosage 5 times in a year.

    I worry I’m over-medicating him. I worry that the medication we’re giving him isn’t the right thing, I worry that he needs more medication. I worry that I’m medicating a baby. I worry about medicating him to the point he’s no longer the boy I know.

    My wish for my son?

    For him to learn how to control his aggression. For it not to come by medicating him into a stupor, for him being able to adapt better and make better choices.

    My wish is not for his Aspergers to be gone. If it was, he wouldn’t be the little boy I love so much. He wouldn’t be the sweetheart who crawls into my bed because he’s lonely. He wouldn’t be the boy who goes out of his way to make babies and his twin brother happy when they’re sad.

    I guess my other wish would be to be a better parent to him. To help him with his anxieties, to understand him better, to help others understand him better.

  10. Rachel C says:

    Autism and my wish for the future. I sit here very overwhelmed; how could I ever fully express all my thoughts in just a few paragraphs… what should I choose to share, and how do I even begin to articulate. There are countless dimensions to this, whether personal or not. Perhaps I will explain the genesis of my growing interest in this term ‘autism’… in this area… in the people involved… in this community.
    “Autism” was no more than a fascination at first. It started in my early teen years; my sister began speech therapy for Specific Language Impairment (SLI). It seemed like an interesting job; quite noble I thought, and stable too. This was when I was first introduced to Language Disorders, and my fascination with autism then began. These people who spun bottles for hours… who rocked back and forth in the playground… who would only repeat everything they hear… what do they think? What motivates them? How do they perceive the world? Intriguing, but these were mere fleeting thoughts.

    I was seventeen when Matthew first came into our family. Imagine growing up as the eldest of The Three Sisters – close in age and being. Our little brother came as a fat bundle of surprise and joy. He blinked at us, drooled on us for over a year. He was bothersome, but drowned our family in lots of fuzzy warmth.
    After some time his immersive interaction with us suddenly ceased. We noticed a strange obsession with escalators and lifts. My brother ignored his toys and his family, often threw tantrums and kept to himself. My parents were quick to recognise these signs, and one day my brother broke the news to me. Indeed, my brother has autism.

    Autism. In an instant it changed… from a fascinating subject it became a frightening part of reality. I didn’t know how to view it of course… was it a disorder? A disease? A difference in personality? Autistic… a group of people simply different from the rest of us?

    And why… why did my little brother have this… thing. It haunted me for months. It took a toll on my family as well and permeated through the household; life started to revolve around him. Therapy. What sort? Money. How much are we willing to invest in a certain programme? At home… What can we do to help him? Lifestyle. How much of our own lifestyles are we willing to change to help him? And the worrying began… yes, what of his future? These were practical concerns, but the toll took various forms. There was guilt from speculation; did we feed him anything wrong… what did we do, bringing him into this world?

    There was also heartache. This was about loving someone dearly, and wanting to show this love, but not knowing how to. For my parents, it was about loving their child, and not even knowing if he recognised them. I think it is deeply painful. Also having your child shunned at the playground by other kids and parents… being rejected by countless kindergardens. Especially in the results-driven city that we live in, having such a child is difficult; at four, parents are giving their children music lessons and tuition classes, preparing them with simple mathematics and possibly assessment books. My brother is still learning to talk.

    Really… what IS autism? I used to dwell on this, and so did my family.
    My brother has autism… but why should I classify him as ‘autistic’? Why can’t I view him as a child.. perhaps he really isn’t so different from everyone else. Why not look at what he’s good at, or what he’s really like. Why let this term place a label on him and classify his every move as a ‘symptom of autism’? Most importantly… why not look at him for who he really is… He is, afterall, my brother.

    Matthew finds beauty in different things. He perceives the world differently… I can’t imagine him as anyone else different. He’s a beautiful child with a streak of independence, a crazily good sense of direction… someone who enjoys flapping his arms about and spinning in chairs. Someone who giggles to himself off and on for fun… Someone who explores his environment with curiousity and intensity. Who just doesn’t care about the world. He is no longer ‘autistic’ to me. He is one of the happiest and most contented people I have ever known. He might often throw tantrums, but there is still an innocent joy that is blatant in his entire being. I can no longer see the fault I once saw in him.

    I wish more people could see the beauty that I see in such people. They have their own gifts… They are rich in character; they are special. Since autism is on such a diverse spectrum, it is even highly likely that all children are on a spectrum in some way or another. I wish for my brother to maintain his wonderful character… but to learn to interact with the rest of the world. I wish for my little country to have more programmes for children like my brother… to remember them and not leave them behind in our streamlined education system. For my community to accept people like my brother… to see them as I do.

    I hope to one day become a speech therapist. I want to make a difference here… I want to understand this special community that I do not understand.

    I wish for my family to continue with its optimism and spirit… I wish for all the other families in similar situations to have the same spirit. I wish for a bridge of communication between communities of people, and that such groups are more accepted into society.

    I wish to reach out to my brother. I hope to one day have a conversation with him, and build the same bridge of communication with other members of this special group of people.

    I love my brother and I love my family. They are truly my source of inspiration, and amongst many lessons, have taught me to love. They have taught me to love the autism community as people with potential and beauty. They have taught me to think twice about people different from myself, and to accept them for who they really are.

    (written by Rachel, whose 4 year old brother is on the spectrum)

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