Attention Autistics & Fellow Family Members: ABC Wants To Hear From Us Again

I'm not entirely sure what this presentation will turn out like, what the focus will be, and so on. I thought I'd send this along though, hopefully we can ensure that our voices can be heard (once again).

ABC News Seeks Submissions for iCaught: OnCall+ Autism
Thursday, July 3, 2008
By: Carin Yavorcik

Share your stories via video

ABC News is presenting an opportunity for you to share your personal experiences as part of a special hour on Good Morning America Now: "OnCall+ Autism." You can also send a question about autism that may be answered by a top medical expert in the field.

ABC News is looking for video submissions on the following topics:
1) Your thoughts on living with autism or with loved ones with autism
2) Any questions you might have on autism to be answered by our medical
experts

Most digital cameras now have a video function that allows the user to record 30-second to 1-minute videos. Once recorded, you can upload the video to your computer the same way you'd view digital snapshots. ABC News is specifically requesting 15- to 45-second videos.

How to submit:

1) Via cell phone:
Record a 15- to 45-second clip and email it to: icaught@abcnews.go.com

2) Via the web
Click on the red "RESPOND NOW" button

Videos submitted by the end of July may appear on ABC News NOW!

Jennifer Lopez Sings for Autistic Students (Video Clip)

I found this news clip about Jennifer Lopez's performance at P.S. 37 in Staten Island. I wanted to share, it was a joy to see the kids dancing, and being so happy.

Jennifer Lopez Sings For Autistic Students

This is a pretty cool story:

NEW YORK — Students at a Staten Island, New York, elementary school for autistic children sure like the way Jennifer Lopez moves.

Teacher Kathy Amati and a paraprofessional showed the video for Lopez's "Let's Get Loud" to the students at P.S. 37. The children liked it so much, they wanted to watch it every day.

They learned the lyrics and the dance moves from the video.

With their teacher's encouragement, they wrote to Lopez, hoping for pictures or an autograph. Instead, she asked to come to their graduation.

On Tuesday, the singer-actress performed "Let's Get Loud" for a group of eight 10- and 11-year-olds at their graduation ceremony.

I applaud Jennifer Lopez for giving those children such a wonderful graduation gift! I also salute the teacher & para who brought music--singing and dancing--to these kids. Sounds to me that these are the types of teachers we need teaching our autistic children (perhaps something other educators could learn from). Also, it's nice to read a positive story on both school staff and autistic students.

I was so pleased to find out my daughter's school has weekly music therapy. That is probably one of her most favorite things from school. And, nothing fills me with more joy than seeing my little one sing and dance...

Autistic and Proud

If you missed the piece this morning on Good Morning America, you can find it online here. There were some wonderful moments, both from Ari Ne'eman and Kristina Chew. I was delighted that ABC included the Ransom Notes campaign, and how our community came together and dissolved it. Transcripts from the show are also available on ABCNews.com as well.

Ari Ne'eman said this early on in the interview, when speaking about a cure for autism, and why some parents are upset over this:

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

That is so important. People hear "acceptance" and they assume ignorance and even laziness. Accepting my child, accepting autism, does not mean I sit around and allow her to struggle through her life. What it means is that first and foremost, I see her and treat her as the unique, beautiful individual she is. I respect her and love her. I have learned so much from her, she is a gift, and I really am lucky. I do all I can to help her, to ensure she has the skills she needs to reach the next step (realizing it may take a long time to get there, and there may be hurdles along the way).

"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.

Society is very intolerant, we see that time and time again. I have always thought of my home as refuge from the world--and now for my youngest, refuge from a society that can be very cruel. I see it in stranger's eyes when she is having a meltdown in the store (the "can't you control you child?" or "what is wrong with you?" stares and glares). Or the perplexed look on another child or even parent's face if she is struggling to do something (a milestone achieved by children younger than her) or when she is hyper, spinning in circles or making odd vocal noises. You don't realize how judgmental the world is until those moments. I always had such hope for the world, it's easy to become jaded when you are in my shoes. Judge me, that's one thing. But, I never dreamed society would judge a young child. It's disgusting.

Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."

Ne'eman believes history is on his side.

"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.

I really have to disagree with Mr. Shaffer's perception of the "Neurodiversity" or autism acceptance or autistic pride (or whatever else one may call it) movement. I see our numbers growing each day. I see it most apparent out in the world, with parents of other children in our community. To be honest, most of the parents who I know who feel as I do, they simply go about their day and their life. They aren't seeking media attention or attending rallies. They have no beef with the government or with vaccines or anything else. They focus on helping their child, dealing with the schools, and just with living life with autism. Those who feel it is wrong for us to "accept" autism, they tend to shout louder and love the camera. But, I honestly feel that we are a rather large, and growing, part of the autism community.

"We really try and understand him on his own terms," she said.

That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.

I couldn't agree more with Kristina. I'm grateful for having (by coincidence and luck I suppose) known a few parents of older autistic children just prior to and around our diagnosis time. They gave very similar advice. There was always a lot of optimism in their message. I have never forgotten their words. My daughter has made tremendous progress, I credit part of that to the fabulous doctors and therapists we have (and knowing she was delayed and needed help before age 1). The other part, and I strongly believe this, is that she has a loving place of acceptance to live in. We do not force her into how we think she should be. We realize she often finds comfort in rocking, flaps when she is excited, and has her own "brand" of play. We understand that eye contact can make her uncomfortable. We do our best to prepare her for social outings, changes in routine, etc. We follow her lead, in many ways. I don't think she would be where she is today, if we focused on changing behaviors or actions that society perceives as odd. She is so connected to us, and each day opens up more to us. We'll be able to help her so much more, because she will know we are trying and that we respect her.

The interview ends with Kristina saying this, a beautiful message that we all should remember:

"Acceptance, to me, is the beginning of hope," Chew said.

I want to thank Ari Ne'eman and Kristina Chew for their wonderful interviews. I truly feel these messages are what will lead to change for our children and for adult autistics. I applaud ABC, along with Deborah Roberts, Michelle Major, and Jonann Brady for doing this piece. I hope it is only the beginning of many more.

TUNE IN!

I'm very much anticipating this one! Will you be watching too? And, really, it should air TUESDAY, June 10!!!!

Tomorrow, Good Morning America will air a segment discussing the neurodiversity movement, featuring comments from myself, Kristina Chew of the Autism Vox blog and Dr. Thomas Insel of the National Institute of Mental Health. Please tune in between 8 AM and 8:30 on ABC. Click here for local listings.



Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

More Inspiration (from Joshua Eisenstat's family)

Thank you, to Joshua Eisenstat's mom, Selma, and his Uncle Doug for replying to my blog. I appreciate you sharing more about Joshua.

I had written on April 2 in a post entitled "The Best From Today," about Selma Eisenstat and her message on CNN about her son Joshua. In response to that post, I received two replies that further touched me. Selma herself, along with Joshua's Uncle Doug left messages. I wanted to share them with everyone, so they wouldn't be missed.

Thank you so much for honoring my Joshua on your blog. I happened to run across it today, and was overwhelmed. Joshua lives on in my heart and memory every day; and to have his influence live on the lives of others means more than I can say. I have hundreds of stories and memories that bring peace and joy to my heart. I loved my son with all of my heart, and every day I am thankful that I am Joshua's Mom. Thank you for making my day today.

Selma

And...

I'm Joshua's Uncle Doug. I was privileged to live with Joshua three different times during my life so we were very close and his death was very hard on me and our whole family. Every time I see another person that has special needs, I smile. Yes, I know its hard, but I too also know the joy. I remember one time that Joshua was having a really bad seizure and he kicked his Dad during the seizure and once he was out of it, he hugged him and said sorry.

He had that pure love as they all do. I agree with Selma, the road is hard, but it is so worth it.

Uncle Doug

I was so moved by each of their replies, and of course with the piece from CNN. I transcribed the piece for a fellow blogger who requested it (see original post, in messages section), as an amateur, so my apologies if I got something wrong. The last paragraph, Selma's powerful advice to others, is beautiful. This is something I wish every parent of an autistic child could see:

"When I hear the child being diagnosed with autism or being born with disabilities, I don't ever know if they would understand if I said, 'do you know how lucky you are?' I know it's gonna be a hard road, I know that, um, you're gonna have sleepless nights and you're gonna have many tears, 'cause I've had many tears. But, um, you get, I feel like you get a slice of heaven and a pure love in your home. You learn service and you learn, you just work together. Once you stop seeing what my child can't do, and you start seeing what they can do, it's a beautiful...I wish you could have met him, just cause I could feel your love for him."

Please visit the Joshua Eisenstat blog, for video, pictures, and more thoughts on Joshua's life. It's quite plain to see how very loved Joshua was, and how deeply those who knew him, miss him.

The Best From Today

There were several good stories that came out of CNN's coverage today. This, by far, was the best. Please visit here, and play the story of Joshua Eisenstat, as told by his mother, Selma.

Thank you, Selma, for sharing your story.

ANTICIPATION

I suppose Andy Warhol was right on.

My mother called me today, to say that CNN was airing short profiles of autistic people and their families. She was happy to report that most were positive stories, and they were showing autistic adults as well. So, I turned it on and saw this great story. I wonder if Jenny was tuned in to CNN today?

Anyway, at lunch this weekend, discussion turned to the "Naughty Auties" special (which I missed) and then Autism: The Musical. I've gotten quite a few phone calls and emails in the last few days, friends and family alerting me to different news specials I may want to watch.
Earlier today, my older daughter tells me about the Autism-Teletubbies commercial she saw when her sister was watching cartoons. This was comical, she relayed the ad practically verbatim. I joked, "so, are the Teletubbies coming to live with us?" My very serious eldest, unamused by my question, says, "No. But, they did give a website, www.autismspeaks or www.speaksautism or something like that." Great.

So all of this in the last couple of days, coupled with the commercials promoting World Autism Awareness Day, and the many fund raisers going on during Autism Awareness Month, I have this feeling of anticipation. All of these groups and news organizations have hyped tomorrow so much, that I am anxious and excited for it. I realize that April 3rd will be no different than today. It's not like some momentous event will occur tomorrow, changing all our lives. But still, I feel I will have a hard time sleeping tonight. My mind will surely wander--what will be aired? What messages will get across? How many times will I cringe? There's a part of me that is very hopeful. Maybe, just maybe, some really good perspectives will be shown. It's possible that good programs for children and adult autistics will be born out of the information presented tomorrow.

Thus far, the overriding theme seems to be about adult programs. I hope this carries over for tomorrow, along with financial planning (aka don't throw blow through all your money and go into debt while your kids are still in the single digits, what will you do for them in their teen and adult years??). That would be a welcome and refreshing change for autism awareness. I suppose I will watch quite a bit of TV tomorrow, my DVR is already set to record a few programs. I suppose I should hit the grocery store for some snacks just for this occasion (sarcasm).

You can visit CNN and see what they've already aired, and what is on the schedule for tomorrow. Better get your popcorn...

Hoop Dreams

If you happen to catch a story called "Hoop Dreams" on Headline News' Glenn Beck show, it is a great one. 27 autistic children get together "like any other kid in America" and play basketball. Christine Dunn (sp?), a parent of an autistic son, developed the program which is based in Staten Island. Her son looks forward to basketball, learning new skills, and best of all, making friends. His mom says he is "happy, and that's the most important thing."

Now that is cool!

The story should be up on the link shortly (it just aired as I type). I apologize if my quotes were not exact. I happened to be blogging something else, and this story came on, so I typed as I watched.

Autism: The Musical

I watched it tonight on HBO. Well, actually I just got done watching it on my DVR. If not for that, I'd never catch a show on television (other than what my daughters choose!). Just before the "opening night" in the film, my daughter started screaming. I went to her room, she was screaming over something I wasn't able to make sense of. I picked her up and she settled down. I brought her into the living room, continued watching Autism: The Musical. She rested beside me, and fell back asleep. Just as the movie was ending, she says, "that was good movie." I guess she heard the audience applaud, and figured it must be good! She then went on to talk about a "pop" that "boke" (she unexpectedly got to the tootsie part of a tootsie pop the other day, it quite disturbed her!). This morning, she woke up screaming over her trike that needs some repairs. I'm always amazed at how much is going through her mind, at all times. I digress, back to the film (little one is now back to sleep in her room--for now)

I loved a lot about the film, there were some parent's views I disagreed with (what else is new). I'm at the point where I am well aware that I won't agree with all the people all the time. I've even reached a stage where I don't care so much what someone else's views are, so long as their concerns and goals are in tune with mine. I am more than willing to work with someone who blames vaccines for their child's autism, IF we are working to get say, a vocational program for adult autistics. We can all have our various beliefs, so long as we are moving forward, with our child's future being the utmost concern. I was able to watch this film, and appreciate it as a whole--even with the few sound bites I'd prefer not be a part of it. All in all, I felt it was an upbeat movie, one that celebrated autism (in its many forms!). It was wonderful to see so much of the spectrum depicted--verbal and nonverbal, asperger's and classic autism, boys and girls, many snapshots of autism.

I also liked that a recurring theme was the future for our children, what opportunities and services they may (or may not) have available to them. Hopefully, it can serve as a stepping stone for more of us to come together, to change our children's futures. There were a few absolutely wonderful moments in the movie, and I appreciated the rawness of the parent's emotions (without being dark and disturbing ala that other Autism "documentary"). I applaud the children and their families, who essentially went where others had never dared gone before. I have deep respect for Elaine Hall, who with humor and bravery followed through on her dream. Honestly--who would believe that a single mom could pull together a group of children (did I mention they are autistic?), and in six months have them perform in a musical?

According to their website, The Miracle Project (which will at some point have information on nutrition and education, something I may be weary of, we shall see) is planning on branching out to different cities. Right now, you can buy various packages (script, music, etc.) to put on your own "Autism: The Musical." I would be delighted to see such a program available to my daughter in the years to come. I think other projects involving art and music would also be wonderful as well; they could prove to be very beneficial to autistic teens. I am going to bed tonight, feeling a bit more positive about the future of autistics. If one person can create a program like The Miracle Project, and make such an impact--what can the rest of us do?

So Long & Be Well, christschool

Well, I was going to add a video by christschool to my piece on Toys R Us & Autism Speaks. He had a great video about where all the money raised by AS goes. Sad to find out, while on youtube trying to find his video, that he has left. Only two of his videos remain. He is very talented with his videos, and I was always moved by them.

I was glad to find out that he is still very active in doing what he does best, changing the world and making it a better place for our children. Be well & be safe, I cannot wait to see all you will do in the future!

Please visit The National Autistic Society and, the up and coming National Autistic Society of America, both organizations truly for and by autistics.

If the video is not showing up above, click on the title to go to christschools' youtube page. For now, I was able to find a few of his videos here and here.

Wow...A Reporter Got It Right (Vaccine Case)!

Kudos to The Macon Telegraph, and medical writer Marilynn Marchione (AP writer Kristen Gelineau and Mike Stobbe contributed).  This is a well-written piece on the "concession case," she did a great job explaining the case and showing both sides of the story.  It was nice to read a fair article on this.

******************

This news clip is one of the more positive I've seen run.  It shows parts of an autistic first-grader's speech session.  Granted, I could nit-pick a few points, but all in all, this falls on the positive side of autism in the media.  If I didn't know what autism was, this story would help educate me a bit, give me some understanding, and (most importantly!) not scare me.  

The ST explains what they are working on in the session, but what I really liked was when she warns the public not to "be so judgemental" if you see a child tantrumming, etc.  I appreciate that!

The link if the video isn't working for you: http://www.topix.net/health/autism/2008/03/coping-with-autism

Celebrity "Autism Moms," Are You Listening?

Perhaps the Hollywood Autism Mom's club, along with the "celeb" mothers a la "Autism Everyday" could learn a thing or two from the so-called "bad-boy" turned obviously proud and devoted father, Colin Farrell. I wonder if they are listening?

Colin Farrell Says His Son Is Exactly the Way He Should Be

“He’s nothing but a gift,” Farrell, 31, said about son James on the Irish interview show Tubridy Tonight. With paternal pride he said: “As far as I’m concerned he’s exactly the way he should be.”

The genetic disorder, which can impair speech, movement and balance meant that James walked his first few steps last fall, when he was 4. “It’s just different,” said the actor. “It’s not different to me. He has his own path. He’s just brilliant.”

“I didn’t talk about my son [but] I felt like I was betraying him, like it could be misconstrued as shame, which would be terrible, because he’s such a celebration,” says Farrell.

Questioning the concept of “normal,” Farrell says his son is happier than so many people in the world. “I look around and I see people who move perfectly, who walk with grace, who speak with great diction and clarity and a great use of the English language and we’re all miserable f—ers – including me, at times.

“And then I see this fella who doesn’t move the way what’s perceived to be ‘normal’ is, and he’s as happy as can be.”

Wouldn't it be nice if one day a celebrity, or other parent in the public eye, speak such loving, passionate words about their autistic child--for all the world to hear? There's no pity party here for Mr. Farrell. He's not pleading for sympathy, contemplating jumping off a bridge, or spatting about controversial cures. No, he has taken a path (not often traveled by parents of autistic children we see over & over again in the media) in which he celebrates his son, advocates for his child and others with Angelman Syndrome. It is my hope that his words will inspire and encourage others to follow his lead (Jenny? Anyone?).


Bold & enlarged by author!! Link to complete article above.

Thank You, Colin Farrell

This is something I wrote about elsewhere, a few months ago. I was reminded of it by a story I found yesterday.


I read this article today & wanted to share. I will say one error in the reporting--they say that Angelman Syndrome is a form of Cerebral Palsy. It is not, Angelman Syndrome is a genetic disorder that does share some characteristics of CP. I have a feeling the reporter did some research, possibly read "Static Encephalopathy" and came to CP. Who knows. Or, perhaps more people could put a picture to or understand what CP is, than just explaining Angelman Syndrome. I know about CP & Angelman's, as they were things doctors have looked into and ruled out for our daughter.

Anyway, I've put in bold the words that I felt were especially moving. Whenever the spotlight is shown on famous people who have a child with a disability or disease, I think it helps us average Joe's living with a special-needs child. It shines light on something perhaps not too many people would otherwise learn of or support help for. Celebs can certainly raise major money for their causes. Sometimes, the famous parents will speak well about it & make a positive impact. Other times though, you wish they'd just shut-up!

But, today is a rare moment when an actor blew me away with his words of love & acceptance for his child. I've always had a bit of a crush on Mr. Colin Farrell--he's cute & the accent really gets me! I'm not being biased though--read what this amazing father has to say:

Superstar Colin tells of 'blessed' life with special needs child

October 15, 2007

Hollywood superstar Colin Farrell yesterday opened his heart and revealed that his four-year-old son James is a special-needs child.

The renowned Irish actor revealed that his treasured son was born with a rare form of cerebral palsy called Angelman Syndrome.

In a moving interview, the actor described how the condition has affected his sons speech and mobility.

But despite the heartbreak the syndrome has caused he said that he is "incredibly blessed to have him in my life" and told of his joy when James recently took his first steps.

He said that his son had shown "amazing courage" in the first four years of his life and that he is an "incredibly happy boy" despite his condition.

Ironically Colin – who has joint custody of James with his mother Kim Bordenave – proudly led the Irish team to Croke Park for the Special Olympics before his son was born.

Colin – who has starred in such movies as Miami Vice and Phone Booth – said that James has "enriched" his life "incredibly."

And he said that he is dedicated to helping his son reach his own "individual potential" and to be "as happy as he can be."

"With my son the only time I'm reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other four-year-olds.

"Then I go "oh yeah" and it comes back to me. But from day one I felt that he's the way he's meant to be."

The actor spoke with pride about the barriers his son has overcome in the first four years of his life – and paid tribute to his exgirlfriend Kim for being proactive in getting James the early intervention he needs.

"He took his first steps about six weeks ago and it was four years in the making. All the work is his, he worked his arse off for four years."

"And when he took the first steps it was incredibly emotional, there wasn't a dry eye in the house."

He's broken that barrier and its all about building on that now.

Although Colin has been juggling a career in Hollywood since he first burst onto the scene in 2003, he is dedicated to spending as much time as possible with his son.

Little James has already met with his extended family in Dublin and even Colin's new girlfriend, Irish student Muireann McDonnell.

The irony of having a child with special needs – months after becoming involved in the Special Olympics and being faced with the same challenges – is not lost on the actor.

But, he is adamant that anyone who has a disability can still contribute to society and have a full and happy life.

"Its mad the way the world works. It's bizarre. I experienced the overwhelming effect of being around those athletes pretty much just before my son was born with special needs.

"I have never thought of my son as being someone with a disability. It goes back to special needs and what is a disability and what isn't."

Another article, with more positive remarks, here.

Normal People Scare Me

I really couldn't think of a better title! I am ordering this dvd, & really excited to see it in full-length. I know this YouTube piece has been out for a while, but I just came across it. So, figured I'd share, in the event someone else missed it too.

So much of what we, the general public, see of autism is very negative. The majority of news pieces and interviews done feature parents, researchers, therapists, and doctors--very rarely autistic people. The conversation generally involves searching for a cause or a cure, controversial treatments, the financial and emotional stresses felt by families, and all too often, autistic children are portrayed as wild, out of control, and completely disconnected. Their parents cry and talk about how painful it was the day their child was diagnosed, and they speak of the daily anguish they feel, living with autism. Many times, the talk becomes even more hopeless. Some parents describe autism as having "stolen" their child's soul, that it's as if their "child was kidnapped," they compare autism to cancer, and some have even admitted contemplating killing their child.

I have no doubt that if the topic was something other than autism, the public would not stand for this type of hate speech. If the parents of diabetic children came out and said that the day their child was diagnosed with diabetes, they felt like their life was over. People would be appalled if these parents continued on, complaining about the cost over medical care for their child, how time-consuming checking blood sugars was, and how stressful it is to maintain a special diet. If they said it was as if their child had been replaced by some other child, that this just wasn't the same child they had before diabetes, people would have to pick their jaws up off the floor.

Can you imagine...

An ad campaign for juvenile rheumatoid arthritis, a father declares:
"I didn't choose this."

On this year's MD Telethon, parents shake their heads, saying:
"You just keep being disappointed."

The father of a child with cerebral palsy:
"I really hope I'm not changing his diaper by the time he's six and a half."

The next St. Jude commercial:
"I actually contemplated putting my child in the car and driving off a bridge."

The mom of a child who is in recovery from leukemia, when asked if she was going to have any more children:
"I'm done having children. I always thought I'd have at least four or five. But I got my a-- kicked."

I am pretty sure these parents would be advised to get psychiatric help. Perhaps in some cases, child protective services would be called in. There would be no excuse for any of these parents to make public statements like the ones above. Yet, the ones above were made and continue to be made by parents of autistic children. And no one says a word for. It is unforgivable. Stop the hate speech NOW.

Support & promote videos such as the one above. If you truly care about what kind of life your child will have in 5, 10, or 20 years, this campaign of shame and blame needs to end now. How do you expect anyone to offer a job, or services, or living arrangements to someone who for years has been portrayed as being inhuman, wild, disconnected, soulless? Personally, I don't want my child to have to fight the public and their cruel misconceptions her entire life.