Archive

Archive for June, 2010

Autism in the News – Friday, 06.25.10

A boy and his dog: After being kept out of Columbia school, Carter and Corbin are thriving in Fairview (Fairview Heights, Ill.)
There have been no outbreaks of allergic reactions, no wild, uncontrollable children disturbed by a dog at school and no issues with the dog going to the bathroom in the school hallways. Read more.

Autism law a personal victory for L’Italien (Andover, Mass.)
Rudy Hall was reading at a level several grades higher than his public elementary school classmates but struggling to adjust socially. By the second grade, his parents made the difficult decision to send him to a private school. Read more.

FDA warns maker of product used as alternative autism treatment (Chicago Tribune)
A product promoted to parents of children with autism is not a harmless dietary supplement, as claimed, but a toxic unapproved drug that lacks adequate warnings about potential side effects, including hair loss and abnormalities of the pancreas, the U.S. Food and Drug Administration has warned in a letter to its maker. Read more.

Business community receptive to autism center fundraising effort (Naperville, Ill.)
For Kim and Randy Wolf, founders of the Turning Pointe Autism Foundation, battling autism is more than just a way to give back to the community. It’s personal. Read more.

Autism in the News – Thursday, 06.24.10

Event offers smile to families touched by sensory disorders (Columbia, Miss.)
A special Stadium 14 screening Saturday of the film “Toy Story 3” is being offered as a treat for area families touched by autism and other sensory processing disorders. And, thanks to a special gift from one Columbia family, some families joining the Sensory Sensitive Saturday film will receive free admission. Read more.

Cops recover autistic boy’s stolen golf cart (Freep)
The stolen golf cart used for a 10-year-old autistic boy’s therapy has been found, Michigan State police said this morning. Read more.

Anne Carlsen Center Calls Autism Conference Successful (Jamestown, N.D.)
The Anne Carlsen Center hosted a successful two-day conference, bringing autism expert Jane Korsten to North Dakota to share her years of experience. Read more.

Bonds of parenthood are being grown online (Daily Comet)
It takes a village to raise children, and Sarah Carzoli’s is a big one. It stretches from her home in Crystal Lake, Ill., to Australia, Paris, London, Canada, Israel and Milwaukee. Read more.

Square up to the music cube (Scotsman)
T may look like some kind of newfangled toy, but this colourful cube is actually an innovative piece of technology which can emulate the sound of 12 different musical instruments. Read more.

McDonald’s(R) 365Black(R) Awards Recognize Rodney Peete and Holly Robinson Peete, Professor Henry Louis Gates Jr. Among Others(Oak Brook, Ill.)
McDonald’s presents its 2010 365Black Awards, continuing to recognize prominent African Americans who influence and inspire greatness among African Americans and all Americans. Read more.

How Technology Can Improve the Future for My Daughter

June 24, 2010 22 comments

This guest post is by Susan Schober. Susan is a 4th year Ph.D. Electrical Engineering-Electrophysics student at the University of Southern California (USC) Viterbi School of Engineering and a mother to a young daughter with autism.

Eva and I

I was searching for answers to my questions.  Will she ever speak?  Will she have a normal life?  What can I do to help?  What caused this thing called autism? What about her future? I read tons of books and searched the internet for some kind of direction. I felt totally lost. Helpless. Confused. Sad. I was even embarrassed to tell people. In fact, only people I absolutely trusted knew my secret: my three-and-a-half-year-old daughter, Eva, was diagnosed with non-verbal autism.

After Eva’s first birthday, which was filled with presents, laughter, and friends, she came down with a fever that lasted for two weeks. Her words and eye contact left at this time, never to return. Her big beautiful brown eyes developed a glassed-over look. Where was the little girl with the rosy cheeks that smiled and giggled constantly? All that remained was an unresponsive child that stared at our ceiling fans or at the leaves blowing in the trees. She acquired weird habits like her love of collecting anything plastic, especially gift and credit cards. More recently, she became obsessed with computers and anything electronic.

Her current fascination is fine with me though, as I myself am a Ph.D. Student in Electrical Engineering (EE) at the University of Southern California (USC). At USC, I am completing my doctorate in Ultra-Low Power Radio Frequency/Analog Integrated Circuit Design.

The Diagnosis

One of the first challenges occurred when Eva was one and a half years old.  She was referred by the Regional Center of Orange County to OCKids for a diagnosis. It was pure luck that Eva was to see Dr. Pauline Filipek, who is a specialist in autism spectrum disorders (ASD). Dr. Filipek’s nurse, Teri Book, who would eventually become a great friend, was in charge of scheduling the barrage of tests – which including blood work, EEGs, EKGs, hearing, vision, ultrasound for gastrointestinal issues, and genetics – that followed to get a more accurate picture of what was going on. The official diagnosis came in a 40-page report a few months later. I read it over and over with tears in my eyes.

Eva’s Early Start program started soon after. Her therapies included physical, speech/language, Occupational Therapy (OT), and Applied Behavioral Analysis (ABA).  My mom would always joke that Eva had a full-time job as her work schedule would last 25-30 hours a week, on average.  It was hard seeing her frustrated, but we stuck with the program.  She slowly learned basic sign language and worked with the PECS (Picture Exchange Communication System) to organize her daily activities.

On one of her follow-up appointments with Dr. Filipek, the doctor tried to get Eva to look in her eyes. This was no easy task. However, Filipek would not give up and finally Eva gave in.  Eva looked in Dr. Filipek’s eyes for a brief second, and cracked a big smile—the first smile in a year. I almost fell out of my chair. Dr. Filipek whipped around and looked me square in the eyes and said, “There IS a little girl in there wanting to get out. It is OUR job to help her.” That was all the fuel I needed to start my quest to find a way to help Eva overcome autism.

The Class

It was by chance that I met Professor Olga Solomon and found that USC had a wide variety of research interests in helping those with ASD. That chance came in September 2009 in the form of an email forwarded to the Electrical Engineering Department at USC’s Viterbi School of Engineering where I study. That email was titled: “SEMINAR: Enhancing and Accelerating the Pace of Autism Research and Treatment: The Promise of Developing Innovative Technology by Matthew Goodwin.” When I received that email, I did a double take. It was addressed to my USC account and it said the word “autism.” I thought by accident I had gotten one of my many autism related newsletters or therapist’s emails in the wrong account for some reason.  But when I read it for the third time, I realized that yes, there was a scientist coming to USC to speak about integrating engineering techniques into research on autism.  I thought it so strange and beautiful. I had to go.

At the end of this eye-opening seminar, Dr. Solomon announced that she would teach a class in the Spring 2010 semester titled “Innovative Technology for Autism Spectrum Disorders” funded by Autism Speaks. The course would unite the fields of engineering, occupational science, neuroscience, psychology, anthropology to give a full view of the technological advances in the world of ASD.  Every week, the students would read articles about ASD science and technology, blog about the readings, and invite the authors to present their research in the class. The course was too good to be true.  I believe I was the first person to sign up.

The students came from a mix of backgrounds, including engineering, computer science, and occupational therapists.  I struggled with being open about the fact that I was a mom of a daughter with autism.  When it was my turn, I blurted it out.  This was the first time I had ever told people I did not know about Eva’s autism and it was therapeutic. This small action opened the door for me to use my engineering background coupled with the knowledge that comes with being a parent of a child with ASD. I was so happy; I was not embarrassed anymore. I was here because of my unique experience and my desire to help and to find answers and solutions.

The first few weeks were dedicated to making sure the students had a strong foothold in what ASD was and what current methods exist to aid those with autism. The first speaker was Portia Iverson and we read about her experiences raising her son with autism through an excerpt from her book “Strange Son.” I was so touched by the passage that I wrote in my blog that I was going to buy the book and finish reading it.. The class day came and I received the most touching gift: Dr. Solomon obtained a copy of the book and had Portia sign it for me personally. I read the book in two days.

Each week following the first, the class had wonderful speakers; these included my favorites: Shri Narayanan – a well known Electrical Engineer who deals with speech and signal processing techniques, Skip Rizzo – a Virtual Reality (VR) guru, and Gillian Hayes, who works in pervasive computing for ASD.  After each talk, I made every effort to speak with the lecturers in order to ask questions and broaden my knowledge. Most importantly, I wanted to say “thank you” and shake their hands. I had such an overwhelming feeling that in order to solve the puzzle of autism, every approach, story, and effort was an important  piece to be considered in the autism equation.

At the end of the semester we worked in teams with mixed backgrounds to develop an innovative idea to apply to the field of autism. My group’s project was to develop an interactive VR and pervasive computing program to help diagnose children with autism living in rural areas where there are not enough resources or doctors on-site to make a diagnosis. We collectively wrote a grant proposal which, if accepted and funded, could be applied to disaster areas like that of Hurricane Katrina or Haiti. Using technology such as video and wireless sensors to gather data (including heart rate, sound, and body movement), the VR system could be set up in a remote area and used by a doctor or trained therapist at another location to make an initial assessment for a child suspected of having autism.  This, in turn, would allow that child to receive an accurate diagnosis, including a recommendation for therapy or medical attention as needed. Not all families are as lucky as I was to live in an area with access to top doctors, therapists, and research facilities dedicated to autism. Hopefully, with a portable system like the one proposed, costs, such as travel expenses and doctor fees, can be greatly reduced and children suspected of having ASD can receive effective treatment quickly.

Looking Forward

Now that the class is over, I can look back and confidently say I am so grateful for the experience and connections I have made though the semester.  The autism technology course has opened a whole new world for me. I signed up for the class because it intrigued me for the obvious reasons.  I wanted to know more about autism and what was out there that could possibly help heal my daughter.  What Dr. Solomon’s course gave me was a basic, yet solid understanding of autism and a way in which I could personally contribute my engineering skills and unique background to forming innovative technologies to improve the lives of individuals with ASD.  Looking forward, I would love to continue to further my research in ASD technologies using both my insight as an engineer and a mom of a child with autism.

In Their Own Words – Through My Eyes

June 24, 2010 103 comments

We recently received the following e-mail and poem submission:
Hello. My name is Cassie Madison. I am 15 years old and I have PDD-NOS. As a child, it was very difficult for me to interact socially with other children. I wrote a poem about a day in kindergarten, as seen below. I decided to read it for my high school’s Poetry Day a few days ago. When I read it, I had no idea what would happen. Many students were actually crying because of what I wrote. Teachers and students alike have been coming up to me for the past week telling me how my poem touched them. I thought I would share it with you, because I want the world to know what it was like to be a child with autism. Though we may be different, we are still living, breathing humans. Though we may have difficulty expressing them, we still feel the same emotions as everyone else.

Through my eyes,
behind the long bangs,
I see the children playing.
I want to play with them.
But they don’t want me to.
A boy chases a girl around the room,
shrieking with laughter.
Girls play house in the corner next to the blocks.
To my right the children sit
with rag dolls on their laps,
styling their yarn hair
and dressing their flopping bodies.
Me?
I stand awkwardly in the back of the room,
watching everyone play happily
with a sense of envy, thinking,
I will never be normal like them.
I am the child nobody wants to play with,
the silent girl who can’t look anyone in the eye.
I am outcast.
Through my eyes I see the world,
but can the world truly see me?
Am I no more than a blip in the scenery,
another smudge of grey
on the paint-covered canvas of life?
I am more than what meets the eye.
I am more than the awkward child sitting silently by herself.
I can write stories about magical characters
that leap off the pages when read.
I can do math at a level higher than anyone in the class.
I can read chapter books,
I can sing songs;
I can be a person, too.
But what does this matter
in the eyes of a kindergartner?
To them, I am Different.
But through my eyes, they’re all just the same.

This “In Their Own Words” poem was written by Cassie Madison, a 15 year old who has PDD-NOS.

“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.

In Their Own Words – A Little Secret

June 24, 2010 15 comments

Ethan, I still love you …

Today was a pretty rough day for you, Ethan. It was for me, too.

It was hard for me to pick you up and carry you to the van with the other kids. I know it’s not what you wanted, but I didn’t want you to hurt yourself or someone else during the behavior you started to have.

I know there are times you don’t understand why things happen as they do. You don’t understand yet, because you’re only six! I hope that one day you’ll realize that the choices I have to make are to help you as you grow up.

When I see you scrunch your nose and raise your small fist, I can see you want to communicate with me, but simply aren’t sure how to do it. I try hard to keep you calm and ask what’s upsetting you, but sometimes that doesn’t work either. I hope you know I’m trying my best to be the mom you need. I’m pretty sure you see it, too. Your hugs and kisses tell me so. When I mess up, you even tell me it’s okay, and I can try again! I love when you tell me its okay to mess up, because I’m not perfect either. Sometimes I get frustrated, too, and say or do things I shouldn’t. That’s why I always come back and tell you I’m sorry when I mess up. I know you’re a very forgiving boy and that you’ll still love me too. When you tell me it’s okay, it makes my heart smile, because I see what a great and wonderful boy you’re growing up to be!

In the van, you screamed so many terrible things that you think about yourself. It made me sad to hear it. I wanted to cry when I heard you screaming such horrible things about yourself. It really hurt to hear how upset you were in school, and that you scratched your face so much. I wish I could have been there to talk with you, and make everything okay again.

I guess this is a part of life where you have to try finding new ways to handle a situation you don’t like. I don’t like hearing that you were hurting yourself again. I think you’re so special, Ethan!

You’re so smart, loving, caring, and everyone tells me how much they love you, too. You’re such an amazing little boy, even if you don’t see it yet. I see it, and I believe in you!

You said you hate yourself, even called yourself stupid and dumb. Ethan, I wish you could see yourself through my eyes. I love you during the good times, and even more during not so good times. I love you even when you call me names, and I still love you when you’re hitting me. I love you when you’re punching and kicking me, and I still love you when you try to bite me. I even love you when you scream that you hate me and then spit all over my face. I love you because God gave you to me. He knew that you were perfect for me before you were ever born. You have taught me to be patient, to listen closely, stay calm, and pray for direction when I can’t do it on my own. You taught me that I am a strong woman who can love more and more each day. You also taught me how to laugh and laugh, even on days I feel sad or grumpy. Your little laugh is contagious, and your eyes glimmer like the sunshine on a calm lake. You taught me not to take things for granted, like a hug, or kiss on the cheek, or our good night routine full of giggles. I want to thank you for teaching me so much Ethan. Without you in my life, I wouldn’t be the mom that Cheyanne, you and Isaac need. You don’t know it yet, but you’re teaching me more than I’m teaching you!

I think you’re one of the most amazing little boys a mother could ever have! I know there are times when you get frustrated and upset. I would too, if I had to deal with the same challenges you face every day. Life is hard enough without all the extra obstacles put in your way. It’s hard for grown ups, and we don’t have as many challenges as you do. You have been doing so great handling all the changes in your life. I know they’re not easy to deal with either. This is another reason you’re such an amazing young boy!

I want you to know a little secret, Ethan – there is nothing in this world that you can do or say to me, that will ever make me love you less. Nothing!

When you’re upset or feel less than great about yourself, I’m still here to hold you in my arms, and tell you just how special you really are. That’s one of the best parts of being a mom! You can tell me all your secrets, and they’ll be safe with me. I won’t ever love you less, but I can PROMISE that I will ALWAYS LOVE YOU MORE!

Ethan, having Asperger Syndrome doesn’t define who you are as a person in this world; no, not at all. It is you that defines who you are as a person. It is you who defines how amazing a person with Asperger Syndrome can be!

You are my son, and I love you more than life!

When others try to make you feel bad about yourself, and there will be some who try, you remind them that you’re a child of God! Remind them that in His eyes and mom’s, you are wonderful! You need to remind yourself of this, too, when you feel upset. The more you remember these things I tell you, the less people will be able to hurt you with mean words.

I can’t wait to see what an amazing man you will become. It makes my heart fill with joy, and my tummy feel like there are butterflies in it! I’m so proud to call you my son, Ethan. I’m so thankful God chose me to be your mom, because no one else could love you as much as me!

“I’ll love you always and forever!” has taken on a whole new meaning in my heart because of you. I am blessed to say, “God gave you to me!” I love you!

This “In Their Own Words” essay was written by Jolene, the mother of a son who has autism.

“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 – Wednesday, 06.23.10

WSU researchers find mothers of children with autism pay price in workplace (Vancouver, Wash.)
Mothers of children with autism see their careers disproportionally affected as they confront greater demands on their time, inflexible workplaces and increased medical costs, according to a new study by researchers at Washington State University Vancouver. Read more.

Whisconier Field Day Raises Money for Autism Cause (Brookfield, Conn.)
About 200 Brookfield Whisconier Middle School fifth- and sixth-grade students played games, ate food and listened to music after the academic day ended this last Wednesday during a field day to raise money to address autism. Read more.

NY lawmakers vote to mandate autism coverage (Albany, N.Y.)
New York lawmakers have approved legislation to require health insurance companies to provide coverage for screening, diagnosis and lifetime treatment of autism spectrum disorders. Read more.

Autism stretches schools (Australia)
Victoria’s education system is being stretched by a huge increase in the number of students diagnosed with autism spectrum disorder. Read more.

Epilepsy, A Disease (Pakistan)
Epilepsy is a type of situation where a person has a sustained performance, abnormal neurons of the brain that cause mental disorders and ways to increase or decrease in the work of the brain.
While symptoms include oblivious to stare at the other, conversation and behavior problems such as noisy self-satisfaction, head jerking, language problems, lack of interest, lack of social awareness and an inability to understand others feelings. Read more.

Stone Oak resident claims HOA harassment over porch gate to protect autistic son (Stone Oak, Texas)
A Stone Oak woman says she’s being harassed by neighbors and the homeowners association for having a child with special needs. It’s a nasty fight that has been brewing for more than a year now over a small white picket gate that the Colquhoun family says is needed for their child’s safety. Read more.

Help Autism Speaks Win $15,000 Now

eBay Giving Works is sponsoring a contest through July 4 – the top three favorite nonprofits will win grants of $15,000, $10,000, and $5,000.

It will take you less than a minute to help us win.

Click http://donations.ebay.com/charity/charity.jsp?NP_ID=7649 and “save as favorite.”

If this does not work:

  1. Click on www.ebay.com/mynonprofit.
  2. Click on the box which says “Find your favorite.”
  3. In the search box “Nonprofit name or keyword,” type AUTISM SPEAKS.
  4. Click the box “Save as favorite.”
  5. Ask all of your friends to choose Autism Speaks using word of mouth, e-mail, Facebook and Twitter.

1 in 110 kids is affected by autism – help Autism Speaks win $15K from eBay Giving Works at http://www.ebay.com/mynonprofit #favNPO

Thank you in advance for your support.

*NOTE: You need to be a registered eBay user.

Follow

Get every new post delivered to your Inbox.

Join 1,052 other followers

%d bloggers like this: