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Now Reading: Sesame Street & Autism -My 2 Worlds Collide in an "Amazing" Way

Sesame Street & Autism -My 2 Worlds Collide in an "Amazing" Way

Sesame Street & Autism -My 2 Worlds Collide in an "Amazing" Way
www.sesamestreet.org/autism

 

(originally written & published on October 21, 2015)

So a few weeks back I revealed to y’all in a blog post that My Name is Frank. I Work at Sesame Street. I am “Autism Daddy”

 

And in that post I mentioned that the reason I was revealing my true identity was because my two worlds autism & Sesame Street were intersecting and that sesame was launching an autism initiative.

 

Well today is the day that “Sesame Street & Autism:  See Amazing in All Children” launches so I thought I’d write a follow up post to introduce you to the initiative and to tell you what it was like for me to work on it.

 

Ok, so first things first all the content for the initiative can be found online at www.sesamestreet.org/autism

 

That is where you will find
interactive flash cards featuring the Sesame Street muppet characters, a storybook featuring a new muppet character names Julia who has autism, some interesting articles, ands bunch of video segments.

 

More on all of that later…

 

But first a bit of back story. I’ve worked at Sesame Street for 21 years and my son was diagnosed with autism 10 years ago in 2005.  And there have been rumblings of Sesame Street tackling autism for a few years now and I’d always be in the back of the room saying “when the time comes I’m your guy”

 

Well after successfully launching some amazing outreach initiatives over the past few years Sesame started focusing on autism in mid 2014 and I was honored that I was asked to be part of it.

 

A big question all along the way was how should Sesame get involved and what part of the autism experience should we focus on. We couldn’t tackle every issue and every challenge and every amazing story so where could Sesame get the most bang for the buck.

 

So we held some focus groups with special needs teachers, autism parents, and parents of typical kids and three areas came to the forefront of what was needed and how Sesame could best help.

 

The first was to use our characters in routine cards.  The autism parents in the focus groups expressed that yes there are tons of these types of resources out there that show the steps to everyday routines like brushing your teeth and crossing the street, but they are usually pretty basic & mundane.  These parents said that having Sesame characters featured on the cards and having them slightly animated and maybe even voiced by a Sesame character would be HUGE for some kids on the autism spectrum.

 

So on the site you will find

http://autism.sesamestreet.org/daily-routine-cards/ 

8 Sesame Street “Daily Routine Cards” that we hope will make a difference in making some everyday challenges a little easier.

 

The second area that the focus groups told us to focus on was the need to educate the general public about autism, and because it’s Sesame to specifically educate preschoolers about what kids with autism are really like.

 

As one mom in a focus group told us “the 1 in 68 numbers are so huge that every kid is likely to have an autistic kid in their class so lets educate them when they are young about the differences & the similarities.”

So that is where the new storybook, “We’re Amazing 1,2,3”,  featuring the autistic character Julia fits in.And that’s where the animation “Benny’s Story” fits in. This is an animation that was created & voiced by Shane McKaskle thru Exceptional Minds, a nonprofit school for young adults with autism pursuing careers in visual effects & digital animation)

 

And that’s where our music video “The Amazing Song” fits in.

 

And that’s where several of our films featuring kids with autism in everyday family “day in the life” situations fit in

 

These are all elements of the initiative that we hope kids with autism & their families will enjoy and relate to, but more importantly we hope that the general public will enjoy and will learn that kids with autism might be a little different, but can still be amazing in their own way.

 

The third area that the focus groups told Sesame to focus on was reaching parents.  Reaching parents of kids with autism, and reaching parents of neurotypical kids, and just showing the world some of the challenges but lots of the joys of raising a child with autism.

 

And as you can imagine this is the part of the project that I was most invested in, and in the end it’s the part of the project that I am the most proud of.  On the site there are 5 films featuring autism parents that are aimed more to adults.  I love them all, but as an autism daddy the one that spoke to me and was closest to my reality is called “Being A Supportive Parent”

 

Watch this autism daddy Ricky tell it like it is…

Ok, so wipe all those tears away, and let’s continue.

 

So what was it like for me to write this blog, and be a daddy of an autistic child, and also work on this initiative?

 

I will admit that some days it was hard to focus on autism all day at work, and then jump right back into it when I walked in the door at night.  For the last 10 years work was somewhat of an escape from being an autism daddy.  Now autism was with me everywhere.

 

So I guess you could say that for the most part working on this project was truly amazing!  But it was at times difficult and it was at times bittersweet.  But I only cried once!  (more on that later)

 

I was involved in the production of all the films.  I went to all the shoots for all the autism films and got to meet all the truly awesome autism families you will see featured in these films.  And in meeting these families it was truly eye opening to watch these parents with autistic kids much younger than mine.

 

Each of these parents, many of whom were 8-9 years behind me on their autism journey deal inspired me with the poise and the patience they had in dealing with the everyday struggles & challenges of raising a kid with autism.  10 years into my autism journey with my son and I truly learned something from meeting each of these families and hearing their stories.

 

So that’s about it.  I think I’ll end this here.  The site is now live.  The resources are all up there.

 

And I’m extremely proud of what Sesame has put together and has put out there for the autism community, and am extremely proud that I got to be a small part of it all.

 

And I hope that you all love it.  And love it so much that you tell Sesame to make a lot more of it!

 

And to that end, we want you to share all the content like crazy via social media in the next few days and weeks so it gets out there to the widest audience possible.

 

And we want you to share your own autism stories on social media about the autism kids in your life and use the hashtag #seeamazing

 

Ok, I’ll end it there…

 

Oh, yeah but first my crying story…

So remember back in March and April when ol’ Autism Daddy went to LA & Utah.  Well Utah was for my public speaking debut, but why was I in LA?

I was there for the shooting of the autism music video called “The Amazing Song”

And I had a “moment” on the second day of shooting.

Basically the shot called for Elmo, Abby, and Grover to be blowing bubbles.  And I was helping the muppeteer who plays Abby Cadabby blow bubbles.

http://goo.gl/okmXMm

We were shooting on this little hill, the weather was perfect, sunny and warm, (while it was still snowing in NY) and I was sitting on the grass all crouched over so I wouldn’t be in the shot. I looked behind me and there was 4-5 pre-schoolers with autism jumping around, popping bubbles, having an amazing time and I looked in front of me, and behind the camera there was 8-10 autism moms & dads showing their love and support and shouting “pop those bubbles”, “good job!”, “don’t grab Grover’s nose” (a very common phrase over the 2 day shoot)  🙂

And in that one moment I got a bit emotional & choked up.

Luckily nobody noticed because I had bubble solution all over my face.

🙂

That’s it.  That’s my story and I’m sticking to it.

THE END!

 


Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).


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19 People Replies to “Sesame Street & Autism -My 2 Worlds Collide in an "Amazing" Way”

  1. Lauren and Kate Gladstone, I completely agree with you. Thank you so much for your posts. 🙂

  2. Frank — were any of the focus groups AT ALL composed of _autistic_ _adults_? My husband and I are autistic, and we want to know: we're people like us included, or excluded, in developing materials for — and about — kids today who are like the kids we were? If not, _why_ not??

  3. I have a few constructive criticisms that I hope you could implement as the program continues. The biggest is to talk to autistic individuals as part of your research. I see that you talked to teachers and parents, but autistic kids and adults should also be a part (I would argue the biggest part) of the conversation. In that vein I would also appreciate if Julia becomes an actual character that she be able to speak for herself without the "translation" from Elmo. Having her part of the community without interactions focusing on educating about Autism would allow autistic kids to have a character who reflects them in a way that isn't about teaching an overt lesson. Daniel Tiger's neighborhood does a great job with this with O the Owl. Finally, I would really appreciate if the language could include "autistic" instead of always "person with autism" because most people on the spectrum prefer to refer to themselves as autistic, and I think this should be recognized.

    Thanks so much for listening. I am very excited to see how this all develops going forward.

  4. I agree with the comment above mine. Julia is a high functioning autism character. She has sound sensitivity and doesn't look at you when you talk to her – from what I read. This is not the autism that most parents know. This not only doesn't help awareness – it hurts it. What do we want people to be aware of? The scarey, dark TRUTH. Or a positive, easy to digest lie? Very few kids on the spectrum don't have meltdowns, food intolerances, and a host of other issues. If Julia is going to introduce to a host of characters that actually REPRESENT the spectrum, great. If not, let her go, the world is familiar enough with high funcitoning autism. It's a real insult to us parents with kids who have REAL autism.

    1. Anonymous

      It continues to be why the general public doesn't truly understand how severe autism can be. The only image of autism that seems to get out there are the "quirky, funny kids" which is a huge insult to the kids on the severe end of the spectrum.

    2. I will say I looked at the site and am very impressed with a few of the stories. It is the most genuine depiction of autism that any mainstream show has ever executed.

  5. Great work! Mainstreaming autism awareness and making the world a more welcoming place for children on the spectrum and their families.

  6. Anonymous

    Sorry, somehow I think the character with autism on Sesame Street will simply send a white washed message as to what autism can truly be. Somehow I don't think Sesame Street is going to display their character having meltdowns, feces smearing, having seizures, biting, bolting and so on. Not impressed but I'm sure the neurodiverse freak parents will love this version of autism since their kids are barely on the spectrum.

  7. My son Jack and I were on that hill in LA filming The Amazing Song! It truly was an amazing moment. It was the end of the morning shoot and I thought the kiddos may just melt down and they didn't! It was an amazing experience then. And truly truly an amazing experience being a part of this initiative. You have all brought so much hope to us. Thank you so very much for all you have done and are doing! Can't wait to keep this message going for a very very long time! Best, Mitzi Henry

  8. This makes me smile 🙂 Thank you!

  9. Frank I've been on your site for a while. My youngest son is high functioning autistic, but we deal with a lot of the same things. He is 18 now and getting ready to graduate next year. We have no idea if he will function on his own or not. He is so easy manipulated. We always told people that toddler/preschool age and early teens were the hardest with my sons level. Thinking of him back years ago the things you and sesame street are doing would have helped so much. Even though our son is verbal his meltdowns, over anytime we had to say no, would be horrivic. Anyways I just wanted to give you a quick "addaboy" Job well done.

  10. Peggy

    Great job Autism Daddy!!! I couldn't be more excited about this! Thank you!

  11. Violet

    Thank you, thank you, thank you! As an autism mom I am so happy to see that Sesame Street has included Autism in their line up. Awareness and acceptance is so important for our autism kiddos and families. I count this as a proud Autism community moment and am definitely sharing this everywhere via social media.

  12. Hello! I was very happy to read your post and to see how Sesame Street was committed to educating about autism; I run a nonprofit that partners children with autism with specially bred and socialized puppies, and the puppies and I often travel to school to talk to the children about what my puppies do to help children with autism and what they can do to help their classmates on the spectrum; I find there is no better way to educate children about autism than through the eyes of a pup being trained to help. Here's a link of me talking to kids in first grade: https://www.youtube.com/watch?v=68URj4T5YKs This placement was part of a documentary we will be included in next year about our work, THE BUDDY SYSTEM. I'm writing to say there would be no greater thrill I can think of other than to be on Sesame Street with my puppies to teach about autism…let me know if we might work together! Kind regards, Patty Dobbs Gross, Founder & Ex. Director, North Star Foundation http://www.northstardogs.com pattydobbsgross@gmail.com

  13. The next time you get to Utah be sure to look me up. Many times I think more people know who I am then probably actually do, ha. Here is our story that was on Good Morning America a few years back – https://www.youtube.com/watch?v=308fVgCVnA0 Also, I would be glad to have you as a Facebook friend.

  14. Anonymous

    The Daily Routines Cards are awesome! I can't wait for my kids to use this site after school!

  15. Thank you! I've been on the autism adventure with my son for 28 years now. Sesame Street was the only TV show he would sit (almost!) still for in the dark days before he started talking (around 6, ironically, the same year your daughter had her candle breakthrough). Almost 20 years later, thanks to him and his unending love for the show, I now share that love with the world via Facebook and the original site (The Sesame Street Lyrics Archive). Thank you for helping our kids find their place in this crazy world, Frank, and many blessings to your beautiful family!

  16. Thank you for all your hard work on this project. The best people for projects like this are ones who "walk the walk". Often the "experts" in the field forget to involve the true experts. Way to go Sesame Street for looking to true experts and making a quality item! I can't wait to see what's next.