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Archive for April, 2011

Ido Kedar Speech at Los Angeles Walk Now for Autism Speaks

April 26, 2011 20 comments

Ido Kedar is a fourteen year old 8th grader in all general education at his local middle school, which he attends with the with the support of an aide. Ido is also non-verbal and communicates via letterboard (unassisted) or dynawrite. He was not able to demonstrate that he understood language fluently until he was age seven. It took several years after that to convince the school district to remove him from his remedial autism class and since, he has taken off running.

“I am here to represent the point of view of people with autism who don’t speak. Some of you might be parents of non-verbal people like me and stopped believing it was possible that your child could ever learn communication or even to understand.

I don’t doubt that experts probably told you that it was false hope to imagine that your child could talk. Well, I don’t talk but I still go to regular middle school in regular classes and do regular schoolwork, and I get good grades. I tell you this, not to brag, but to give you hope.

I don’t need to talk with my mouth. It’s too hard. But I’m able to communicate thanks to my letter board and dynawrite. It was a long journey to get to here from where I started. I had years of silence and rotten frustration. I was totally not able to show people I understood, so I suffered inside while my specialists chose wrong for me.

It was the worst, and I know it’s equally challenging for parents too.

I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty, and the pursuit of happiness.

But here’s my hope. I went from so bored in school in remedial education when I couldn’t communicate to a diploma path in high school next year. How, is the story of the potential in your kids.

Teach them interesting things. Read them age appropriate books. Talk normally to them. Not, “go car,” “say hi,” “good job.” I believe many autistic people are understanding inside and can’t show it. To be talked to like a baby is so frustrating.

The letter board was my freedom. This is it.

It takes a while to learn how to use it, but it’s worth it.

Communication is the most important thing.

I used to dream of talking, of course. But I am not free because I talk. I don’t talk. I am free because I can express my ideas in pointing to letters, in typing, in my blog and in my speeches. I am not lonely now.

Autism is a deep pit. Don’t give up.”

Autism in the News – 04.26.11

Are You an Autism Mom? Submit a Guest Blog for Mother’s Day! (About.com)
As Autism Awareness Month draws to a close, my thoughts are fast turning to NEXT month – and Mother’s Day. This year, I’m inviting autism moms to submit a guest blog to be published on this site during the month of May.  Here are the details. Read more.

Advocates push for autism attention (Montgomery Advertiser)
With an average of one in 110 children now diagnosed with an autism spectrum disorder (ASD), the need for more research and continued funding for services is greater than ever, a group of autism advocates said at a recent rally at the State House. Read more.

‘Fly Away’ DVD includes autism documentary (South Bend Tribune)
Jeanne, a mother played by Beth Broderick, tries to balance her busy life while caring for her severely autistic 15-year-old daughter, Mandy. The movie unfolds like “Groundhog Day,” except the daily routine is far more exhausting. Because she’s up every night singing her daughter back to sleep, Jeanne routinely sleeps through her alarm clock, which means Mandy (Ashley Rickards) misses her bus. Read more.

Surfers for Autism event draws 200 kids to Juno Beach (Juno Beach, Fla.)
More than 200 kids on the autism spectrum took part in a Surfers for Autism program April 23 at Ocean Cay Park in Juno Beach. Read more.

iPads, iPods aid communication in Elgin special-needs classes (Larue, Ohio)
Apple iPads and iPods are doing the talking in Elgin West Elementary School multi-handicapped classrooms. Read more.

 

Celebrating Moms!

April 25, 2011 61 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

We would like to celebrate mothers this week!

What positive message do you want to send to other Moms who have a child with autism? If you could offer encouragement to other Moms what would you say? What new strength or wisdom did you gain from raising a child with autism?

Be sure to subscribe to the next Community Connections that will, “Celebrate Moms,” to be published on May 6.

Camp Summit

April 25, 2011 3 comments

This is a blog post by Liz Applegate, the Program Marketing and Social Media Manager at Camp Summit.

Ah, summer camp.

If you were a summer camper you can probably remember it like it was yesterday: Fun activities like horseback riding or arts and craft; roasting marshmallows around a campfire; and even staying up late, giggle under the covers with your cabin-mates.

Or maybe, like me, hearing camp stories from childhood friends would have you green with envy and dreaming of the day when you could share the experience with your own children.

But what about a child with Autism? What about your child with Autism? Could these dreams hold true for them as well?

These are questions the staff at Camp Summit is asked by many possible first-time camp families and the response is always a resounding “Yes!”

Camp Summit is unique in its ability to care for campers with no upper age limit. Because of this, success can be built and measured continuously from age six through adulthood. Not only is success seen through continued yearly attendance but also watching campers grow and mature through the years.

From mild to severe, campers with Autism are nurtured to take part in activities with their group and many participate in the much coveted dance at week’s end.  This takes place in an individual’s timeframe-maybe over a few days or maybe over a several years.

Besides a much needed respite for family and caregivers, the benefits of attending camp reaching into the daily lives of our campers and families is often seen. A family recently expressed great joy in sharing news of a successful family vacation with their child with Autism. Through the experience at Camp Summit, the camper was able to fully participate in the activities of the vacation creating memories for all.

But as a caregiver how can you help ensure a successful camp experience for your camper?

Just as your summer camp experience (or that of your friends’) was unique for your needs and interests, so must a camp for a camper with Autism be unique. Camps, even those for campers with disabilities, are not “one size fits all” and it’s important to find the right one for your camper.

Some important questions to consider:

  1. What is the camper to counselor ratio?
  2. How does the camp staff handle transitional times (moving from activity to activity)?
  3. How are food allergies and sensitivities handled?
  4. What if your camper doesn’t want to participate in a given activity?

The benefits of camp are often immeasurable. From needed rest for the family or experiences outside the normal realm of activity, often small accomplishments can be measured in treasured memories by the camper and their families. And through the ongoing efforts of a trained camp staff and continued participation, your camper can enjoy fun experiences from your own summer camp memories…and maybe even leave you green with envy for a roasted marshmallow or two.

For more information on camping programs, including our new fall camping schedule, at Camp Summit, visit our website at www.campsummittx.org.

Autism in the News – 04.25.11

Half of autistic children prone to wandering, study finds (Columbus, Ind.)
Half of children with autism are prone to wandering, sometimes for hours — a dangerous behavior pattern that can start before kindergarten, a national survey has quantified for the first time. Read more.

Wiger: Task Force Would Help Minnesota’s High Numbers of People with Autism (Oakdale Patch)
A recent report on autism prevalence among 8-year-olds in public schools shows that Minnesota has the highest rate of autism in the United States.  The average rate in our country is one in every 126 8-year-olds, but in Minnesota, the rate increases to one in every 65. Considering these numbers, it is our duty to do what we can to understand autism and offer help to individuals with autism and their families. Read more.

Sen. Michael Nozzolio visits student, honors Autism Awareness Month (Senaca Falls, N.Y.)
In recognition of the hundreds of individuals who have diagnosed with autism, as well as their families and the dedicated professionals who work with them, State Senator Mike Nozzolio is helping to recognize April as Autism Awareness Month. Today, Senator Nozzolio commemorated this special month by visiting 5-year-old Jack Davis, a child whose life has been positively impacted by improved care and early treatment of autism. Read more.

Aging Out and Autistic: A Growing Problem in Illinois (Springfield, Ill.)
Just about everyone knows someone with autism theautismprogram.org these days. That may be because, according to the Centers for Disease Control, more than one million Americans have some sort of autism spectrum disorder; most of them are children. Read more.

Women’s Hockey Recognized by Autism Speaks and NHL (Hamilton, N.Y.)
Head Coach Scott Wiley and the Colgate women’s hockey team were recently recognized at the “Face-Off for a Cure: An Evening to Benefit Autism Speaks and The Gillen Brewer School” – an event in partnership with the National Hockey League. Read more.

Categories: Autism in the News

The Mean Things People Say

April 25, 2011 60 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

In the past, I’ve blogged about my own experiences and then tips to overall help individuals on the spectrum. For this post, however, I am looking for your thoughts and tips on a subject that I’m not sure there is a clear cut answer to.

Here’s the scenario: quite recently, I was with a group of friends hanging out when a mutual friend who was under the influence of alcohol started to become belligerent. He was clearly upset about something and decided to storm off. After several of our friends were trying to calm him down and make him come back to the group he called me out for being autistic in a negative connotation; like being autistic is a bad thing. He said, “Shut up Kerry, You’re autistic!” For some reason this remark just bounced off me, but after that experience I haven’t forgiven this individual or shared the story of what happened with anyone else.

It’s difficult sometimes to understand why people can be so mean. A few weeks before that situation, I was on my way to an event with a peer when I called, “shotgun” so I could sit in the front side passenger seat. My peer replied, “Sure, Kerry has that DSS hook-up right there.” In context DSS means Disability Support Services at the college I attend and this was in reference to getting accommodations for being registered as a DSS student. So I guess the question I have for those reading is…

“When did you first feel comfortable addressing comments either positive or negative people make about you or a loved one on the spectrum?”

I know this may seem like a very broad question but in my experience as an individual on the spectrum I’ve always had a tough time communicating the issue to others, especially when I was younger. Now at the age of 23 I have spoken at several events about the issue and can go up to anyone and speak my piece in a non-threatening way to make those aware of what’s right from wrong. The first time I can remember ever speaking up for myself was when I was 13. One of my classmates and I were having a conversation about disabilities and I mentioned that I was autistic. Almost instantly he said, “No you’re not, you can talk!”  I came back and said, “It’s different for different individuals” and then went for the rest of the class period almost discussing things such as high functioning/low functioning autism, the signs, the causes, etc.

At the end of the day, I know that I’ll fight in most scenarios to make individuals aware not only for myself but so other individuals don’t have to deal with similar cases. As a community here at Autism Speaks, I would love to hear your thoughts on the subject. Please leave your comments below. Thank you.

Autism in the News – 04.22.11

April 22, 2011 2 comments

Rep. Ellen Story honored as advocate for the autistic (Amherst, Mass.)
An autism services advocacy group honored state Rep. Ellen Story D-Amherst with its legislator of the year award last week, a citation that came one year after Story helped pass legislation that will require health insurance companies to provide insurance to individuals with autism. Read more.

Naperville autistic student fights to end ‘R word’ (Naperville, Ill.)
Jordan Schubert stands before a crowd of 300 swimmers who have been joined by their coaches and families for a Special Olympics swim meet at Neuqua Valley High School in Naperville. Read more.

Moms Talk: Autism Awareness Month (Corona Del Mar Patch)
Thank you for joining this week’s Moms Talk  (the name notwithstanding, dads, grandparents, expecting parents and even people with no kids are welcome and encouraged to contribute). Every Thursday, check out a new Moms Talk discussion on Corona del Mar Patch. Help add to our conversation and leave a response in the comment section below this article. If you have a question that you’d like our Moms Council to answer, send us an e-mail. Read more.

Mom seeks custody of boys with autism ‘imprisoned’ by dad (Vancouver, Wash.)
The biological mother of two children with autism rescued from what police called a prison in their own home is seeking custody of the young boys. Read more.

Madison senior saluted at autism event (Madison, Ohio)
It’s a little tough for her to admit, but Jennifer Sturgis, a senior at Madison High School, was a little nervous Wednesday evening. If 14,000 people were all looking in your direction, you might be, too. Read more.


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