Saturday, October 10, 2015

Tracking Progress Across 12 Years of "Sesame Street Live" shows












(originally written & published on October 12, 2015)

So now that you all know that I work at Sesame Street I can tell you about one of the many perks of the job. When the "Sesame Street Live" show comes into town I can call in a friend to get free tix for the 3 of us. 

If you don't know what "Sesame Street Live" is... It's a live show that tours the country with big "walk around" versions of all the Sesame Muppet characters. And they sing and dance and teach. 

Think "Disney on Ice" minus the ice. 

And we have taken his majesty to a Sesame Street Live show every October since the king was about 17 months old. Every October since 2004. 

This past Saturday we went. It was our 12th year in a row. 

And the king had a real nice time...better than last year, but that's not the point of this post. 

The point of this post is that because we've been doing this once a year for 12 years I can literally track the king's autism and his progress (or lack thereof) and my progress in dealing with it across those years. 

This all dawned on me this past Saturday while I watched the 2 and 3 year olds dance next to my 12 year old as he really enjoyed the show.  The fact that he paid attention to the show was huge progress for the king compared to years back and the fact that I could watch the typical toddlers dancing and clapping and not feel a pang of jealousy was huge progress for me. 

That's the point of this post. 

Anyway so here's a real rough, basic breakdown of how the king was and how I was across all these showing of SS Live over the years:

OCTOBER 2004 -- The "he's not as easy to handle as the other kids year" -- Pre diagnosis. The king is 17 months old and I remember noticing some differences. All the other kids are dancing in the aisle and enthralled with what's going on over on the stage while my kid just wants to look at the lights and the ceiling fans and is almost oblivious to what's going on around him. Plus it's literally  impossible to get him to sit still in his seat for even 30 seconds. I remember thinking:  "What are these parents doing that we're not doing?  How are they getting their kids to sit?  And follow directions?..."

OCTOBER 2005 -- The "post diagnosis" year -- By this the king was almost 2 and a half and we had a pdd-nos diagnosis and had therapists coming in and out of our house for months. I went to that year's SS Live show noticing the differences between my kid and the other kids his age, but "maybe he didn't stand out as much compared to last year?" I thought...i believe I was  somewhat hopeful because he was making some nice progress with his therapies. 










OCTOBER 2006 thru 2009 -- the "he's autistic but doesn't stick out yet years" -- The dog days of autism. In these years from when the king was 3 and a half thru 6 and a half is when he went from mild pdd-nos making some decent progress to the severe, flappy, classically autistic kid that you all know and love today.  :) 

We were on the GFCF diet for one of those years, maybe two.  So, while all the other kids pestered their parents for hot dogs and ice cream i remember that we had a bunch of the king's crappy and expensive GFCF snacks with us. It felt like the king still barely enjoyed the show back then and still couldn't sit in a seat for long stretches, but that's something that probably only I noticed. He still was small so he didn't stick out among the other toddler SESAME fans. Lots of naps during the show, a few meltdowns during these years. It was during these years during a particularly rough show where I first had the thought "why do we put ourselves thru this every October?"

OCTOBER 2010 thru OCTOBER 2011 -- The "Paula years" and the "is he getting to old for this" years. So we got our autism service dog Paula in May 2010 so in October of that year we brought her to the SS Live show. Now at 7 and a half he was definitely getting to be one of the biggest /oldest guys at the show so that made him stand out. Add in that he was tethered to a dog and he really stood out. 

As much as we love having a service dog the dirty little secret is how hard it can be in public places when All Eyes Are On You & Your Family. And SS Live was one of those places. Kids just lose their minds, understandably so, when they see a dog in a public place. So as we went to and from our seats it was as if we were rock stars...everybody notices us. 

Again this was my issue. 

The king seemed un-phased by this and Paula did her job beautifully over these years. So much so that his majesty sat in his seat for almost the whole show across these two years and really seemed to start to pay attention to what was happening on the stage... So huge progress there with both his sitting and attending!  I just needed to get over my issues with all the staring.










OCTOBER 2012 & OCTOBER 2013
The "epilepsy years". So the king started having seizures in May 2012 so these two years at the SS Live show we were now worried about seizures in addition to autism. And I was now wondering if the flashing lights from the show would bring on seizures. He had a small / mild seizure during the show in one of those years. And the 2nd year he was wearing a cast boot on his right leg for a mysterious limp. So he was happily hobbling around. So that second year I was worried about seizures and the limp. And meanwhile the king had a great time as the biggest baddest 10 and a half year old at the show. 

OCTOBER 2014 & OCTOBER 2015 -- The "status quo years" or the "acceptance years". Yeah the king is 11 - 12 years old. Yeah he's at a Sesame Street Live show. You gotta problem with that?  

But seriously these past 2 years have been much easier for me. Nothing phases me any more. Yep he might have seizures during the show. Yep he will probably be the oldest kid in the place. Yep we still bring in a bag full of his snacks (just non- GFCF snacks).  Yep he might not be able to sit still the whole time. (last year we had to move our seats to the back cuz something was bothering him). 

But none of this phases me any more. I'm fine with it all now. Mostly I'm fine with it because it's so obvious now that the king is enjoying the show...Yes the actual show that's going on on the stage. Maybe I've finally reached a place where seeing the typical toddler kids doesn't bother me as much any more. All I know is I was looking forward to going the last 2 years and I looked back on it fondly after it was over these past 2 years and didn't need a nap after the show these past 2 years. 

That's all huge progress for me!

Anyway that takes us up to the present. Who knows what the next 12 years will bring. Will we take the 24 year old king to the show? I don't see why not. And I'm sure that'll come  own unique challenges. 

But that's for the sequel to this post. 

Look for "Part 2" in about 12 years. 

:)

PS I'm curious if you all have something that is the equivalent of this. Some event or thing that you do with your special needs kid once a year and because of that you can really track progress by looking at it closely.  Let me know in the comments...

THE END





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



11 comments:

  1. Yes! Actually we are driving home from a terrible bounce u experience but writing this is bringing my adrenaline down a bit...we have been going to a fall festival since Jack was diagnosed at 18 months with first pdd-now and then good ole ASD by 2 1/2. We literally tortured ourselves at the festival each year. It has bouncy houses that require a ticket, hayride with lines etc. So the toddler years were " my kid has real poor balance in this pumpkin." to " my kid seems freaked out by the hayride." Then it went to all out meltown and what we lovingly call the tantrum vomit. He can't wait in a line. He can't understand a ticket for a bounce house...and he can't understand why anyone would be pulled out of a bounce house when "too many kids are in there." Each year we would leave either dragging him screaming or carrying him after he vomited. We would clean the stroller, his clothes and get in the car wishing we still smoked. This year he is close to 6....with his therapists and us working on certain things and his maturity we have had a few really decent trips. No vomit, better understanding of waiting and less adrenaline. We even had one trip that was fun! For us and for him and his brothers. Like, as a family we had a good time! That NEVER happened last year and didn't happen really since he was under 1 and things were unclear.

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    Replies
    1. I actually wrote about it last week I think:

      http://www.sameautismscriptdifferentday.com/?m=1

      Delete
  2. This was a tradition for all of our children on their 4th birthday. The first one was in 81( he might have been 5 then it would be 82), 83,85,89,92,and02. We found 4 to be the best age but not for the last one. we took him again at 7 or 8 and he loved it. The last one is on the spectrum.

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  3. My son is the same age and we have gone every year as well since he was very young. He, too, has grown through those years and he loves it more than ever before. We will continue to take him to the shows as there are so few things he TRULY enjoys like the SS Live show!! I don't care if people stare. I do it so that he gets to have fun that makes HIM happy!!

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  4. We can't do live shows much because of extreme social anxiety so this was an epic moment for us- being able to stay and enjoy his dad's gig last summer! Too loud for his assistance dog so she waited backstage https://m.facebook.com/story.php?story_fbid=791250300992781&substory_index=0&id=436920783092403

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  5. We've been taking my son to Sesame Street Live since he was 1. He does have a hard time sitting still through the whole show,but I usually just take him into the lobby and let him burn some steam. Then we go back. You can tell he enjoys it more and more as he gets older.
    He absolutely loves Sesame Street! That's all he watches I actually end up knowing half the songs they sing on stage.
    I do have to ask one thing though. Does Sesame Street have any videos for learning speech? My son is non-verbal and he actually seems to try to say words every now and then while he's watching the show.

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  6. Hi, my daughter is 20 for the past 10 years we have went to see Sesame Street Live. She loves it. She has classic autism and is non verbal. Every year we go and this year as part of her Birthday present for the first timeI plan to buy the VIP package or the Sunnyside package for her 21st birthday. They always have the show in January and her birthday is the last week in December. We go and have lunch and then to the show. I looked back at the pictures and like you saw years of progress and other years not so much. Sesame Street is a part of our lives. If you could spread my thank you for the joy they bring my kiddo. Sending my best to you and the king

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  7. Our 6 year old wants to be Elmo for Halloween. We have a typical 8 year old, so we know most 6 year olds would find this unusual. Initially I hesitated since he has to wear this costume to school. But then I thought, what the hell-- it's what makes him happy. Plus we are fortunate that he attends a school for kids all with learning challenges, so I am pretty confident that he won't be the only Elmo. And if he is, that's fine too. I so credit blogs like yours for helping me get over my stuff and let him enjoy his. Thanks for what you do! Cheers!

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  8. We watch SS live every few years if not every year. It's not as fun as it used to be. Me and my brother are alot older...but that's ok. I really don't care.

    We grew up watching classic sesame street. Yeah, one of us has autism. Which one it doesn't matter. It's a fun show.

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  9. We too went to SS Live for many years (son is autistic/non-verbal) from about 2 to 12-13. My son is a first-tier Muppet fan and this is the only show that we really felt he would like. I don't think he ever made it through a full show due to the noise, but he enjoyed it ten times more in the later years because we bought closer seats and went to morning shows when he is not tired. Once, I e-mailed the show to see if he could visit the Muppets afterwards and explained his special needs. He wasn't able to do that, but they did send him a big packet of pamphlets and stickers which was very nice. The only reason we stopped going was the cost and the increasing realization that he enjoyed SS much more on You Tube where he could "order" them around and repeat his favorite songs and phrases at will.

    However, we definitely noticed a real progression over the years with the adjustments we made. He was very upset by the furor and didn't understand it all the first year and he really did enjoy most of the show the last year or so. We didn't worry much about the fact that he was a "big kid." towards the end. We just wanted him to get fun from the experience.

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  10. The "he's autistic but doesn't stick out yet" years are just ending for us. We have a HUGE southern family with about 50 people showing up for Easter. We rent out a park and all the kids hunt for Easter eggs and sometimes a bunny will show up or someone will bring a horse, or pay for a band or something. As a kid I used to look forward to these events more than Christmas. All the phases that you mentioned above are accurate for us only we actually heard those phrases. At first, it was the usual, "all kids do that". Then later the, "he'll grow out of it...right?" Now, we are getting comments of understanding and acceptance of who he is. When other kids ask why he does certain things, I have heard a relative simply reply, "that's just Landon". So, I am one of the fortunate ones that have a good family. I know that. Other family members are actively trying to prove that he is that way because we are bad parents. We don't talk to them anymore:) But, back to the subject, I try and see progress through their eyes sometimes and it can be sobering but, at the end of the day, "that's just Landon."

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