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Archive for September, 2010

Autism in the News – Tuesday, 09.28.10

September 28, 2010 1 comment

PPACA: Commenters Ask for Commonsense Limits (National Underwriter)
Affordable Care Act implementation guidelines should let insurers and health plans impose sensible limits on use of medical services. Commenters representing insurers, insurance producers and health plans have made that argument in comment letters now posted on the website of the Employee Benefits Security Administration (EBSA). Read more.

Autism Radio UK will “benefit hundreds” (UK)
It’s claimed that a niche radio station dedicated to the subject of autism will benefit hundreds of people. Autism Radio UK broadcasts from studios in North Staffordshire, and is believed to be the first project of its kind in the UK. Read more.

Rain Fails to Dampen Philanthropy at Kresge Krew Event (Kingsport, Tenn.)
The Kresge Krew Charity Pro-Am returned to Ridgefields Country Club for the second straight year on Monday and for the second time in as many years, the PGA pros in town to raise money for Autism Awareness had to dodge raindrops while raising money for the charity created by Cliff Kresge and his wife, Kingsport-native. Read more.

Boy with autism tapped as Oktoberfest royalty (La Crosse Tribune)
Jonah Cowgill was 19 months old when he stopped. He stopped talking and would go off on his own. He stopped playing with his toys. “Within two weeks he disappeared,” his mother, Shelly Cowgill, said. Read more.

Autistic Teen Clings to Life After Stabbing (Modesto, Calif)
Neighbors of the mother accused of repeatedly stabbing her autistic son say they had only known the suspect as a devoted mother and autism activist who loved her son more than anything. Read more.

In Their Own Words – Acceptance Park

September 28, 2010 11 comments

This “In Their Own Words,” is written by Erica from Laughing Through Tears,  who started blogging about the “funnier” side of autism as a way to keep her sense of humor and sanity.

Last month on a 100-degree Sunday, my husband and I took the kids to a “water park.” That is to say, a park that had a water feature. This is what most people in our area do when the temperature moves north of 90F, and it can be a real challenge to find one that’s not overly crowded.

I always feel a certain degree of anxiety when I think about taking my kids to these types of parks, because of all the typical families that will be around to witness their peculiar behaviors (I’m allergic to public scrutiny). So, I thought and thought, and then remembered an obscure little park tucked in a neighborhood development behind a newer shopping plaza.

The problem with being a newer area is that all of the trees were still just saplings, giving off only postage stamp-sized patches of shade. After just 10 minutes, my husband turns a spectacular shade of sweaty vermilion and I shoo him off to a shaded pavilion while I stay to supervise the boys. Here we go, I think to myself.

A few moments in, and Cannon kneels down over the drain in the center of the fountains. “CANNON!” I call out sharply, knowing exactly what he is going to do.

A nearby couple looks over, surprised by my sharp tone.  “Nothing comes out of there. It won’t hurt him,” the dad says.

“Right, but he is going to lick it,” I say.

A slight pause while that sinks in, then the mom laughs and says, “Let him!”

While I’m wondering if I heard that right, Carson slips behind me to steal another woman’s soda. I rush over, gushing apologies; bracing myself for a dirty look and possibly sarcastic comment. “It’s fiiiine,” the woman drawls, as she proceeds to take a sip from the very same can a strange child just slurped on.  She then reaches into her pack and offers a juice pouch to Carson. “This is for my daughter, but you can have it instead.”

Completely stunned, I look around to get a better sense of who all of these people are. These can’t be parents of neuro-typical children– they’re too relaxed, too accepting, so utterly non-judgmental. Clearly, I’ve stumbled into a den of some of my own kind and not realized it. But no, these children are all having conversations with one another, taking turns activating the button that turns on the water spray, keeping their clothes on, and licking nothing or no one.

I watch in fascination as one little girl fills an enormous McDonald’s cup with reclaimed water from the fountains and then proceeds to dreamily spoon it into her mouth with a beach shovel. No one screams at her to stop.

The spray shuts off, and a boy of about eight years of age calls out to someone, anyone, to PUSH THE BUTTON. No one rushes over to enthusiastically reward him for making his request in a full sentence. Well, I do, because I’m just wired that way now, but his parents don’t. In fact, I think they’re ignoring him altogether. Until now I’ve only heard of this phenomenon, where a child talks so much that the parents actually tune him or her out.

“I’m BACK IN BUSINESS!” he shouts when I turn the water on for him, and I find myself automatically wishing that I had some goldfish crackers or m&ms to give him as language reinforcement.

When I can stand the heat no longer, I round up my little gremlins to leave. We depart to smiles and casual waves from a few of the parents. The park shimmers like a desert mirage when I cast one last, backwards glance at it. Did I dream this place– “Acceptance Park”– where a kid can truly be a kid, and no one gives a rip?

My husband joins us on our walk back to the car. “How was it?”

“Perfect, actually,” I tell him.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – Monday, 09.27.10

September 27, 2010 2 comments

Bereaved Bayonne parents create foundation, donate special iPad to Lincoln Community School (Bayonne, N.J.)
Dominick and Rose Lillo of Bayonne have created a foundation in their three-month-old son, who passed away from Type 1 Spinal muscular atrophy, a degenerative disease that destroys the nerves controlling voluntary muscle movement. Read more.

Part 3: A typical classroom day for a child with autism (The Brownsville Herald)
The children were still getting used to the new school and new surroundings during the first few weeks of school. The part of the morning called “circle time” for the children was about to begin. After going to their schedules, the children settled down by the CD player. Read more.

Computer games help autistic children read faces(Pittsburgh Post-Gazette)
Jim Tanaka has always been interested in experts. For his Ph.D. dissertation, he studied expert bird watchers and dog show judges, and developed a program to train novices on how to recognize certain species of birds.Read more.

Parents taught superintendent about needs of autistic children (Boyertown, Penn.)
Dr. Dion E. Betts, Boyertown School District superintendent, thought he had all the answers when he worked as a special-education teacher. Read more.

Disabled youths construct new Muslim comic book superhero (New York, N.Y.)
Comic book fans will soon be getting their first glimpse at an unlikely new superhero — a Muslim boy with superpowers who uses a wheelchair. Read more.

Legendary motorcycle event, the Love Ride roars back (Clutch & Chrome)
Every rider knows sometimes it takes a look back to know where to go and that certainly seems the case with one of the more famous motorcycle events. Read more.

Autism Speaks U Spotlight – Saint Mary’s College

September 27, 2010 1 comment

This guest post is by Allison Drake, the president and founder of the Autism Speaks U Chapter at Saint Mary’s College in Notre Dame, Indiana. She is a senior Communicative Disorders major and plans on becoming a speech pathologist working with individuals on the spectrum. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

My desire to help the student population on campus comes directly from my family. My youngest brother T.J. was diagnosed with autism at the age of six. Growing up he faced many difficulties academically and socially because of it. Since his diagnosis he has come such a long way, and I truly believe that children on the spectrum can improve dramatically with proper support and guidance. However, we as a country have not come close to funding enough research to help support and guide the almost 4 million children born with autism every year. Autism Speaks is an organization that stands for what I believe in; providing education and funds for research to help those affected by autism.

 

The Autism Speaks U Saint Mary’s Chapter sporting the sunglasses that they sold at one of their fundraisers.

 

It is for this reason, that I decided to start an Autism Speaks U Chapter at Saint Mary’s during the Fall semester of 2010. With majors like Communicative Disorders, Psychology and Education, Saint Mary’s was lacking an organization that supported a population many of us will be working with in the future; that’s where Autism Speaks U comes in. Our goal as a chapter this year is to raise funds to support the national organization at Autism Speaks.

We are currently in the process of planning a walk on Saint Mary’s campus to occur during Autism Awareness month in April 2011. We are going to work hard to include the local community, by means of reaching out to the local Autism Center in South Bend.Since  Saint Mary’s is right across the street from the University of Notre Dame, so we have reached out to Notre Dame for additional support. They also happen to have classes and research labs dedicated to autism studies. With the support of the local community and the University of Notre Dame, we are expecting our first walk to be quite a success.

We are currently hosting two popular fundraisers on campus. We started selling autism puzzle piece silly bandz for $1 each, and have raised almost $200 in two weeks. We also ordered sunglasses in neon green that promote our Autism Speaks U Chapter for the girls to purchase and wear at the Notre Dame football games and around campus. I have been fortunate to have a great team of officers who have helped me do everything. We wouldn’t be where we are without all of their help. Since school started, we have recruited almost 150 girls to be part of our chapter and have reached out to other clubs, such as the National Student Speech Hearing and Language Association, Saint Mary’s Education Club and Psi Chi which is the International Honor Society in Psychology. We are so excited to experience this much success so early on in the semester. I cannot wait to see the foundation we will leave at Saint Mary’s when I graduate in May.

If you’d like to support Allison’s fundraising efforts at Saint Mary’s College please click here.

If you are involved with Autism Speaks U on your campus and would like your story to be featured on the Autism Speaks blog, please send it to AutismSpeaksU@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Considering the Lilies

September 26, 2010 4 comments

This “In Their Own Words,” is written by Patty Dobbs Gross.

Danny and I were riding on the subway last week, glad to have snagged seats next to each other, happy to be together on the way to enjoy both summer in the city as well as a ballet at the Met; we both share an appetite for the Big Apple as well as for the visual delicacy of dance… 

 The man coming toward us was very tall, with a heft to his body and a slice of rolling skin uncomfortably visible between shirt hem and ragged sweatpants.  I was also inexplicably encased in sweatpants that had seen better days on this sweltering July day, and this was what I was thinking when the man suddenly looked up, raised his voice and addressed the entire subway car in one fell swoop of a sentence: “Attention…may I please have your attention?” 

 He had clearly said this before, and all eyes swung obediently to his commanding presence. “I am homeless and in need of change, even small change, to attend to my needs.” This is all I can remember him saying verbatim, for the mention of his needs dropped a curtain in my mind; he seemed much too tall, confident and well fed to be truly needy; at least to be significantly needier than my own family, quite house poor and college drained in the suburbs…

Out of the corner of my eye I saw Danny reach into his pocket for change; without a moment’s thought I gently touched his hand to communicate for it to still. Danny has autism and despite this fact (or because of it) he now attends USC’s School of Cinematic Arts, earning an MFA in film editing. His only adjustment to life at USC was his habit of giving cash to the strings of panhandlers that ring its iron gates…he called me one night and sheepishly confessed to doling out nearly $80 in cash to a woman who was homeless. After she took the money she claimed to have an inheritance she could share with him if he would just give her the $100 it would take to clear the court costs. Danny didn’t care about the inheritance, but he worried for her because she couldn’t reach this money without this initial outlay of cash; he wondered to me, in the voice of someone hurt by the level of misunderstanding between us, shouldn’t he give this relatively small amount of cash to her so that she could access this money and get off the streets? Doesn’t that make logical sense? 

 This was the moment I realized that although Danny never abused drugs or alcohol throughout his teenage years, he clearly still needed to learn how to just say no.    

The man was moving toward us as he strode confidently down the center of the subway aisle, holding the overhead silver rings to steady himself with a steady rhythm as the car rollicked back and forth, but he stopped his journey when he noticed my hand touching Danny’s.  He met my eyes with a snap.

“Are you his mother?” the man asked me, point blank and direct.

“Well, maybe that’s true….” I said, laughing a bit as if he had told me a silly joke.  All eyes in the subway car were now on me while I struggled to hold his eye contact, my heart rapidly picking up pace. “Or maybe not.”  It wasn’t that I wanted to be provocative or to attract attention, but that I didn’t want him to know anything about me whatsoever, and being Danny’s mother is at the white hot core of my being.

The man stopped his journey forward then, a move that struck me as mildly aggressive as he loomed over my sitting body. At my age my body is apparently sinking slowly into itself anyway, but he made me want to fold myself up in a hurry, but I happen to be Irish (and this explains a lot.)  So instead of fading away I held his gaze for another moment while I told him: “That’s mine to know.” 

He held my gaze pointedly for another moment, but then shook his head and broke eye contact (first! ;-) to resume panhandling; soon only his thrusting cup was visible, although his words rang out clearly as he altered his spiel to say, “Well, I wouldn’t let my mother stop me from doing what I wanted, and I wouldn’t let my aunt or my neighbor or anybody stop me either…I’m my own man…”

I tasted the bitterness of my sarcastic comment before I swallowed it, along with my considerable fear, to simply look down and pretend to study my shoes (they were black Velcro sneakers, cheap but sturdy, and quite handy if you need to dash off in a hurry.)  I was old enough to know that you never poke the bear if you can possibly help it, and I was already figuring out how I’d shape this experience into a lesson for Danny if we survived to make our train ride home to Connecticut. It would definitely end with the moral of the story being why he should not give money to panhandlers.

 When we left the subway car two stops later, on the grimy stairs that lifted us to the light of day, I whispered to Danny, “You didn’t take that stuff he said about manhood personally, did you?” 

“What stuff about manhood?” he asked me, genuinely confused.

I remembered then what I sometimes forget, that despite his success in life Danny still doesn’t learn much from his auditory pathways; in fact, he hadn’t even processed this man’s taunting words once he was out of his personal line of sight. The visual information of the scene he later relayed to me was letter perfect, and he could describe the man’s outfit much better than I in the short amount of time he had attended to him. Danny is not cured of the sensory integration difference he was born with despite his successful life, nor has his gift/curse of not attending to social subtleties vanished; he has only learned to compensate for his inherent and supposed weaknesses and capitalize on his considerable strengths the way he had learned to do before he even crafted his first original sentence.

And he might have continued to attend to what the man was saying if he had kept his voice loud and commanding, but Danny didn’t end up processing any of his later words that were spoken in a sweet and saccharine tone, despite their mission to wound Danny’s ego in order to shame him into giving him money; the honey coated but cutting words had instead gone blessedly over Danny’s head. I smiled as I thought of this man being hoisted by his own petard rather than what might have happened if he were clumsily called out by me, and I silently vowed once again to remain quiet when my ego struggles to speak, as so many previous life lessons have also attempted to teach me.

I have been a slow study…

 I raced up the stairs and joined the frenzied and sizzling pace of New York City in the summer, focusing on my gratitude for the breeze and my son beside me as we raced together toward the Met… just minutes later we were watching a ballet that it took a month of Sunday night hot dogs to afford to witness, and I swear I didn’t even notice the looks I must have received by virtue of my scruffy sweatpants and Velcro shoes before the lights went down; Danny and dance were the only things on my mind for the next few blessed hours, as I considered the beauty of all the lilies that graced our field.

In Their Own Words – What is Autism?

September 25, 2010 29 comments

This “In Their Own Words,” is written by Megan Winkler-Schmitt, who was inspired to write after her best friend’s son was diagnosed with autism.

I was thinking today, as I dried my hair, about what this mysterious thing called autism really is. I started making of list of what it is, based on what I’ve seen only, and I ran into the other room to write it down. I’d like to share it with you.

Please note that this is what autism looks like to me. These are the experiences I’ve had with it, and it differs from your own. I do not have a child with autism, but a little one very special to me and very dear to my heart struggles with it. I have learned so much from this little angel who is undeniably special and infinitely precious, and I see autism as something very real now. Let’s just say that for me, myths have been thrown out the window, and when you know someone with autism, you realize that what you thought you knew isn’t correct at all.

I don’t know why this jumped into my head. I wasn’t reading anything on it online. I wasn’t talking about it. I didn’t see a news program on it. But, sometimes, inspiration hits and you just have to listen. So, here are my thoughts. Please, please, share your thoughts with me, too.

 (And yes, I realize that it came out in very loose poetic form; it’s just how it works sometimes.)

 Autism is joy in little things.
It is pain and heartache.
It is the pleasure of bubbles;
the consistency of golden toast.
It is running through sprinklers,
because it just feels so good.
It is frustrated little grunts,
communication in screams,
a mommy who just wants to hear,
“I love you,” but even “Mommy” would be nice.

Banging your head against the wall,
it is the sleep of a sleepless night.
It is pleading and begging,
bargaining and weeping.
It is a mother and father clinging to one another,
and faith.

It is the crunch of a leaf,
it is the wind in your hair.
It is the simple joy of repetition,
the comfort of a pattern,
the security of routine.

It is unexpected moments,
of open-mouthed kisses:
those little things others take for granted.

It is loving a fluffy dog with your cheek,
and crossing your eyes,
just because the world looks curiously different that way.
It is inventing your own language
that only the fairies and Mommy speak.

It is struggle; it is strife.
It is imperfection,
but, then again,
so is everything,
in life.

It is tears and fears,
but it is simplicity and innocence.
It is not taking for granted,
it is cherishing, hoping,
running up a down escalator.

And if life is perfect,
just the way it is:
faults and imperfections,
second-guesses and small joys,
then what is autism but life,
lived in its own way?

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – 09.24.10

September 24, 2010 Leave a comment

I-Pad unlocks new world for people with autism (Terre Haute, Ind.)
When the iPad was unveiled earlier this year, people around the world began snatching up these tiny, touch screen computers. Read more.

UN 65th session: Madam Chantal Biya joins the fight against autism (Cameroon Radio Television)
On the sideline of the 65th ordinary session of the United Nations General Assembly, Cameroon’s First Lady, Madam Chantal Biya took part in the third United Nations Forum on Autism. Read more.

Tonight’s Fashion for Autism models and designer Edwing D’Angelo (Washington, D.C.)
Last night, models  strut their stuff for Edwing D’Angelo’s casting call as a practice run for tonight’s Fashion for Autism event  at the Capital City Club. Read more.

Lessons served on court (The Daily Journal)
Brian and Marisa Wachhorst were heartbroken when they learned their 10-year-old son, Riley, was diagnosed with Asperger’s syndrome — an autism spectrum disorder — five years ago. It was only natural. After all, the one thing parents want most is for their kids to grow up with a “normal” childhood. Read more.

Early Childhood Intervention celebrates 30 years of service (HeraldDemocrat.com)
Thirty years ago, Grayson Early Childhood Intervention Director Linda Horton said it wasn’t uncommon for parents of children with disabilities and developmental delays to hide them from the public. Now, thanks to ECI and greater public understanding, today’s children with similar challenges can overcome them. Read more.

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