Monday, November 20, 2017

My AUTISM Review of the "Night of Too Many Stars" Event

















Hey guys,

So I had the honor of attending HBO's Night of Too Many Stars event at the Theater at Madison Square Garden this past Saturday night.

This was a 2 hour benefit / telethon hosted by Jon Stewart to support the organization Next for Autism.  


NEXT for AUTISM is a non-profit organization that transforms the national landscape of services for people with autism by strategically designing, launching and supporting innovative programs.


If you didn't get a chance to watch the show you can watch it on HBO GO and HBO Now.



You can also view the entire 2+ hour event for free on youtube below or HERE.  HBO put the whole thing up for free.  





Why was I in the audience you ask?

I got a free "press" ticket from a friend of mine who works at HBO and has been a long time Autism Daddy supporter and follower.  


What follows is my unbiased review.


However, let me say straight away that I am not going to review the comedy of this event.  I'm a huge John Stewart fan... and don't mind raunchy foul mouthed comedy.  And because this was on HBO, at 8pm on a Sunday night, I expected and was looking forward to lots of F bombs and MF-ers.  


And that is just what I got.  I had no problem with the comedy. 


I personally thought the show was fabulous and hilarious.  


If you want to read a good review of the comedy of the show, read Vulture's great article "The Highs and Lows of Night of Too Many Stars, Jon Stewart’s Autism Benefit Show" for a complete blow by blow of the 2 hour show.


I'm here, however, to review/recap the autism related portions of the show.  And I thought that these were equally fabulous.  


Jon Stewart started the night off by explaining what's different about the organization Next for Autism.  


He explained that while many organizations engage in advocacy or fund scientific research, NEXT For AUTISM addresses the needs of people with autism and their families across the country, right now. They create and support exceptional educational, clinical, and vocational programs, all cutting-edge, all with an eye towards affecting fundamental shifts in current approaches to autism services.


And then throughout the night they showed several films that captured stories of autism families and individuals and how Next helps them.  


My favorites of these films were:  


Felicia Johnson, a mom of a son with autism, Josiah.  She explained how she lost her home, her husband, and then her son was diagnosed with autism.  Then an organization DAMAR Services - www.damar.org gave a helping hand. 




Former private investigator Dennis Debbaudt discusses how his son with autism shaped his life and how that lead to formulating and training criminal justice professionals, police, and emergency responders on how to respond to autism.





And then there was Carly Fleischmann.  When I first heard that Carly was going to be on the show I googled her to see what she's been up to lately.  












I had seen her famous interview with Channing Tatum, but I didn't know that she had since gone on to interview a bunch of other celebreities and has her own web talk show, Speechless with Carly Fleischmann.


So I assumed that they would show a film about Carly and maybe she would be in the audience.  They did show a film about Carly.  This film.






And while this film was playing I'm sitting in my seat at the Theater watching them wheel out a talk show desk and chair.  

And then I realize that Carly is going to do a live interview with someone.  

And then out walks Carly and Stephen Colbert, and my first thought was "Way to go Carly!"  

And then my next thought was "wow, interviewing someone in her home has got to be way different than interviewing someone on live television in front of an audience of 2000 people!"

And then the film ended, the lights went up, and there was Carly interviewing Stephen Colbert.




And all went ok for a moment, but then Carly's
 autism kinda took over, or actually Carly's OCD took over and she got distracted by the hundreds of pieced of paper confetti that littered the stage (because of an America's Got Talent spoof comedy bit earlier in the night).  And the next thing you know Carly is down on the floor distracted by the paper



And one of her aides came out to try and redirect her...



but the damage was done, and Carly couldn't be redirected.  

So Stephen Colbert calmly motioned to the band, "The Roots" to start playing which they did.  And the HBO team quickly regrouped and went to the next celebrity filmed piece.


Entertainment Weekly has a good article on the whole incident and the amazing way that it was handled by everyone involved.  


From that article:
Fleischmann’s interview was cut short when she became distracted by golden confetti on the stage due to her OCD, prompting Stewart to talk about the challenges of doing talk show segments live, and to joke that it used to take three weeks to film one episode of The Daily Show. 

“It also shows you something really important because she is a brilliant interviewer and a really funny person, and people with autism have challenges and obstacles to get through,” Stewart said. He went on to take the blame for the way the segment went, calling himself an “a—hole” for shooting the golden confetti out onto the stage earlier in the show. “She’s awesome and she’s super-funny and smart,” he added. 

Colbert also approached Fleischmann in the audience later to explain further and promise to do the interview at another time. 


“I wanted you to know that Carly’s distraction had nothing to do with her autism and has everything to do with her OCD,” Colbert said. “And I really want to do this interview with Carly. I got a peek at her questions and honest to god this was going to be a real interview and we’re going to do it in the future.” 

Colbert said the questions Fleischman wrote were “hilarious” and then joked, “No matter what happened, at least you didn’t bring out Sean Spicer” — a reference to Colbert’s poorly received stunt when hosting the Emmys in September.

The whole thing was handled extremely well by everyone involved.  

And, as the dad of a kid with severe autism it was, honestly, my favorite moment of the night.

Why, you ask?

Well, of course in my heart of hearts I was rooting for Carly to do well.  

And while it would have been much better television to see Carly conduct a funny interview with Stephen Colbert, I was sort of happy that the world got to see that, even the kids who have these miraculous amazing stories still struggle mightily every day.


The last autism moment of the night was the big finale.  The big musical number with  Jodi DiPiazza, a young woman with autism and the Actionplay Chorus, a choir of kids on the spectrum, singing "Rise Up" with British singer/ actress Cynthia Erivo 



It was truly magical.

And that moment when all the parents came out and stood just behind their kids on stage is when I kinda lost it, but there really wasn't a dry eye in the house.

That's it.  That's my review / recap.  

So happy and honored that I was able to attend.

What can I say?  A great autism event which already has raised over 2 million dollars, and the money keeps rolling in... and all for a great and important cause!

If you'd like to donate you can donate online at https://toomanystars.org/donate/ or text Text STARS to 50555 to give $25

Thanks...  Autism Daddy, over and out!

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!!








Thursday, November 9, 2017

Becoming a "Typical" Teen at Just the Right Time

















I'm starting to write this post at 9:30pm on a chilly Wednesday night.  I'm sitting on my couch in my underwear eating frozen pizza while watching "Curb Your Enthusiasm" and writing this.

I am home alone.  The king is with his mom tonight.  I had him Mon & Tues nights this week, she has him Wed & Thur nights and then we alternate the weekends.  

4 months into our separation (read about it here) & living apart and I'm still not entirely used to this.  When he's not with me, and I'm not busy, things just feel a bit odd, especially during the week.  I get home from work, and feel like I'm supposed to be doing something!

I wrote about it a bit a few weeks ago on my Autism Daddy Facebook page:









Some mornings when he's not with me, I wake up in a jolt and think "is the seizure monitor on!  did i miss something!"

However, this post isn't about me.  It's about him.  And as I said in that Facebook post, he is handling everything extremely well.

I say that with happiness & pride, but I also with a sense of fear and dread.  I'll explain that in a bit.

But you're probably wondering: what's this blog title about him becoming a typical teen all about? ...













Before I begin that story I should mention that I recently re-arranged his bedroom and got him a new tv up with a DVD player & a Roku connected to it.  It is slightly more age appropriate for a 14 year old.


Ok, so here is the typical teen story.  Since the separation when the king is with me he's been his usual easy going self.  He's been very affectionate with me, which is normal for him.  

However, at some point every evening he grabs his ipad, then takes me by the hand leads me to his bedroom, takes my hand to put it on his tv.  

I put his tv on and start one of his favorite shows.  He then takes me by the hand, leads me out of his room... and then closes the door in my face.

He kicks me out of his room!!

So, I go downstairs to watch tv or eat dinner, all the while watching him on his seizure camera.  And he is lying on his bed with his hand down his pants, while watching a show on the tv and youtube videos on his ipad at the same time.  

Now does that sounds like a typical 14 year old or what?  He wants nothing to do with his lame middle aged dad, he just wants to sit in his room all day doing his thing!

There was one night a few weeks ago the NY Yankees were still in the playoffs when I watched the entire game downstairs while he watched his stuff upstairs.  I would, of course, check on him, and he was pleasant and happy to see me, but I could tell he would rather I leave!

What a typical punk ass teenager!  Now here's some things that are not like a typical 14 year old.  

The show he's watching on the tv?  Dora the Explorer  

The youtube videos he's watching? Sesame Street videos.

And when his show ends or he gets stuck on some other non Sesame youtube video he needs dad to come up and reset the tv & the ipad.

However, the behavior, and the aloofness is just like a typical teen.

And in my mind it couldn't have come at a better time.  I was worried about how he was going to handle the separation, and how he was going to handle living half the week in one place, and half the week in another.  

And maybe him wanting to be more independent, more on his own is a defense mechanism.  Maybe that is his way of dealing with this crazy new normal.  

And if he wanted to stay in his room all evening and looked unhappy or angry I'd be concerned.  However, it's not like that.  He happily hangs with me for a few hours each evening, and then he happily retreats to his room to be alone for a few hours.  

So I am thrilled!

So what's that sense of fear & dread I mentioned earlier?












Well, I've been living this autism lifestyle long enough to know that the bad times don't last forever, and the good times don't last forever.  The other shoe always drops.

So, as easy as the king has made the transition of this separation on his mom and me, I fear for when he goes thru a rough patch... whether that be a rough patch with his behaviors, or a rough patch with his seizures.

I wrote in my separation blog post  


Maybe in a weird way our kid having autism and epilepsy kept us together longer than we would have if we had typical kid(s).
I honestly think that the reason that this is happening now is that the king is finally in such a good place with his health and his personality, and his school situation.
He is in such a good place that we both have had a chance to breathe for the first time in YEARS.  And we are looking around and realizing that we have a lot less in common than we did years ago.


However, what that makes me think about is: what would it have been like being a 50/50 parent years back when he was extremely self injurious?  Or when he was having multiple seizures per day?  Would I or she be able to handle that by ourselves for half the week?  

Why am I looking backwards you ask?  Well that's my way of looking forward.   If (or when) he hits one of those rough patches again, will we be able to handle it solo?  He's 14 now.  He's already bigger than his mom, and he's getting closer to my size every month.   How will we navigate that?

I'm going to stop the fear & dread there.  I don't want this blog post to focus on the what ifs & the negatives.

I want to end with the happiness & pride.  

So let me end it by saying that I am so proud with how he has handled this whole transition.

And I am so happy that he became a typical teen who wants more independence at just the right time...  

However, as happy as I am that he's entertaining himself in his room, there's some nights when I have to be that overbearing dad who wants to crash the party.  

So I will sit on his bed with him watching Dora on the TV and Sesame on the ipad whether he likes it or not.

My dream is for him to some day say, "cmon dad, you're embarrassing me.  Get the hell out of my room, and go downstairs and watch your shows and leave me alone!"

Ahhh.... A dad can dream can't he?  

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!!






Friday, November 3, 2017

I Dropped the Ball Last Weekend











I dropped the ball last weekend. For the first time since wife and I got separated over the summer I feel like I dropped the ball with something with regards to the king.

Last Saturday was a special-needs Halloween party that we have taken the king to for the past five or six years.

And for the last three - four years we used it as an excuse to get my mother and sister and her husband and kids together. We would all go to the Halloween party together and then go out to dinner or they would come back to our house for dinner.

And this year I completely missed the email announcement as to when the party was.

As I was bringing the king to his Saturday special-needs swim last weekend one of the moms said “will we see you at the Halloween party?”

And my reaction was “oh shit that’s today”














The party was from 11 AM to 3 PM and the King has back to back activities from 1030am till 12:45pm.

So after his music therapy I took him to the Halloween party without a costume and without any other family in tow.

He had an OK time but it was definitely a quieter outing then in years past and that gave me a sense of sadness and guilt.

And let me take a step back and say that it’s not like the king always had a completely amazing time at these Halloween parties. He had some good years and some ok years.

However, as I said before it was just a good excuse to get the family together revolving around a fun activity.  And because I dropped the ball we had no plans after the Halloween party and so the king & I spent a quiet late afternoon/ evening at home alone.  


The king seemed totally fine & happy about this.  He was content to watch tv and/or play on his iPad for hours, but I felt guilty. 


So, basically, for the first time since the separation I feel like I dropped the ball. And my brain tells me it’s not gonna be the last time....

That's all I've got for today.  Just a quickie blog post. 


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!!





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