Wednesday, September 30, 2015

My Stress & Anxiety: How My Kid Having Autism & Epilepsy Have ReversedThings...












(originally written & published on September 30, 2015)

I'm having trouble lately separating important stress & anxiety with nonsense stress & anxiety

I think 9 years of living on Autism Avenue & 3 years of living on Seizure Street have warped my sense of what's worthy of me getting stressed about and what's not.

My filter seems to be way off...

When we have really stressful events like a 2 and a half day stay in the hospital for an EEG for the king a few weeks back of course I get stressed, but somehow I power thru it.  However, in the days following the EEG a text from wifey saying "he had no seizures & no naps at school, but did a lot of hitting" will send me into a tizzy.

WTF?!

And then I'll think to myself:
We just got thru the war of almost 3 days in the hospital!  He had no seizure activity!  That is great news!  So he did a lot of hitting!  So what?!  That's par for the course with him!  What am I getting so stressed or upset about?!

But it' too late.  I'm already in a stress tizzy and most of the times there's no turning back.

But at least both of those stress examples above had to do with the king and his issues.

Sometimes I can't figure out why I'm stressed or anxious...

I'll get home and think
"why am i stressed right now?  king is chillaxing.  wifey said he had a good day.  dinner is on the table.  all is right with the world.  what is making me feel like this?"

Sometimes I can figure it out.  Other times I'm clueless.







And when I can figure it out it's usually something stupid or nonsensical that is stressing me out.

Like yesterday we switched phone/tv/Internet providers to save about $30 a month.  And I knew that I had to call the old provider before midnight to cancel.  And I knew in that phone call they'd be trying to convince me not to switch and trying to resell me on their service.  And I was driving home from work yesterday getting stressed about making that phone call and thinking
"I gotta get that done before midnight because otherwise they will charge me for another day!

WTF?!

The king had a 3 and a half minute seizure yesterday morning and yet I was almost more stressed about cancelling the cable!  And what would've happened if I didn't get it done by midnight?  I'd be charged for another day which equals about 5-6 bucks!  Why the F am I stressing about that?  Why am I ruining my ride home over something so stupid!

Other stupid things that give me stress/anxiety:







-- Misplacing my work security ID to get into the building -- WTF!?

-- Traffic (yesterday I was literally yelling and banging on the wheel because if I made it in after 10am it would cost me an extra $2 to park) WTF!?

Maybe this is all a coping mechanism.  I get thru the really tough stuff with less stress / anxiety and then blow up and stress out over little things...

but then that makes me seem like a psychopath on both fronts...

"why is he so calm when his son is having so many seizures?  

"why is getting crazy over $2?"


and I'd rather not blow up and stress out over anything...

Anyway I don't have any answers and this post is all over the place.  All I know is that the idea to write this popped in my head last night when I was riducously stressing over cancelling the phone/tv/internet provider...and I got that done by 9:45pm last night...

...Right now it's 6:45pm on a Wednesday and our home security system isn't working which probably means a phone call to the new provider and that is currently what is stressing me out (I think)...meanwhile the king is sleeping off a seizure induced nap.

WTF?!

Where are my priorities of what to be stressed about?!

Is there anybody else out there that's going thru what I'm going thru?

That's it.  That's all I got.  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!!

Sunday, September 27, 2015

My Name is Frank. I Work at Sesame Street. I am "Autism Daddy"








           

(originally written & published on September 27, 2015)

Hi my name is Frank. 

I've been blogging anonymously as Autism Daddy since April 2011. 

I've also been working at Sesame Street as Frank since May 1994. 

In the early part of my career at sesame I travelled the world working on foreign versions (co-productions) of Sesame Street. 

Throughout the late '90s & early 00's I went to China, Japan, South Africa, Canada, England, Hungary, and Brazil helping to train foreign broadcast teams in how to make their own local version of Sesame Street. 

It was extremely hard work but it was truly amazing!  I was in my late 20s and early 30s with a new wife and no kids and I was traveling the world and going to lots of places that I would probably never think about visiting. 

In college I never thought I'd be traveling to Shanghai China to work with the voice dubbing talent to guide them in now to do Ernie's voice and Elmo's voice on their version of Sesame Street called "Zhima Jie". 

I never thought I'd be in Johannesburg, South Africa helping to teach their post production team on how to plan their show, "Takalani Sesame", across the entire season to get the most educational impact. 

I never thought I'd be in São Paulo helping to audition the puppeteers to bring Sesame Street ("Vila Sesamo") back to Brazil for the first time since 1977. 

However, I haven't been on an international trip for sesame since 2007. 

What happened?










The king was born in 2003 and was diagnosed with autism in 2005.  

And around that same time in 2005, when things were still quite crazy at home with his majesty (and they are still quite crazy 10 years later!) there was a new very high profile co-production starting in Indonesia. And I was honored when my boss asked me to be the Sesame international producer on it. But in the budget there was 3-4 trips to Indonesia at about 2 weeks each scheduled over the course of the following year. 

And wifey and I had a sit down and we talked about it and it just all seemed like too much.   The king was having a rougher time back then.  The diagnosis was still kinda new. Wifey & I were struggling.  She really needed my help in the evenings and on the weekends.  And it just felt like too many days away from home and Indonesia felt way too far away for me to be in case there was an emergency. 

So I had to go to my boss and say, due to my situation at home and my son's autism I just don't think it's possible for me to travel as much as I used to...

So for a year or two I was put on lower profile projects that required less travel (in the UK & Brazil) and then in 2007 I got a job shift that required me to not have to travel much at all. 

And now here it is 8 years later I'm still here at sesame, in a similar role to the one I shifted into in 2007. 

And yes, I will plainly say that my child having severe autism and later epilepsy probably totally changed the trajectory of my career. 

Did it hold me back? 

Probably. But who knows?  However, I truly have no regrets about making that change.  It was better for my life, for my wife's life, and most importantly for my son's life I believe.

And now it's 2015 and I've been working at sesame for over 21 years. 

And writing & blogging as Autism Daddy for over 4 years. 

So why did I decide that now is the time to come out and reveal who I am and where I work?










Because now is the time that my two worlds are colliding. 

For the last year I've been working on an outreach initiative here at Sesame that deals with autism. 

Sesame has a long successful line of amazing outreach initiatives over the years. 

For example, Sesame recently produced an initiative to help kids with incarcerated parents (http://www.sesamestreet.org/parents/topicsandactivities/toolkits/incarceration). 

Sesame also recently produced an initiative to help military families. http://www.sesamestreetformilitaryfamilies.org/ 

And now, next month, in October sesame will be launching its autism outreach initiative, Sesame Street and Autism: See Amazing in All Children,  to help autism families and the general public.  

And I was heavily involved in the production of all the video segments that you will see next month. I was the Sesame producer and helped to find a few amazing filmmakers who found some truly beautiful autism families.  And together with a team of other folks at sesame I feel that we've created a really great music video to an extremely catchy tune which hopefully you will be know all the words to and will humming in your sleep next month and several films that follow a few autism families stories that I expect tons of you to relate to. 

So basically I'm outing myself for 2 reasons  

1) because I'm extremely proud of the work I've helped accomplish and I want to share it with y'all and say  "Hey check this out. I worked on this"

and 

2) because, not to toot my own horn, but with over 120,000 followers on Facebook I've got a pretty darn large autism platform at my disposal and I want to promote this Sesame Autism initiative big time to help it reach the most eyeballs.  And if I did that as my anonymous self some of you would be thinking "why does he keep promoting this?"    Well now you know why.  Cuz I work there, and I want as many people to see these videos and use these resources as possible.

Now the initiative is not just about videos and films.  There's lots of other stuff that will be on the website when it goes live in mid to late October.  For now that is top secret.

So there you go.  So in the next days & weeks I will be teasing the launch and also promoting some ways for you to get involved in our social media campaigns.

And when it goes live you can find it all, not on the show itself, but on the web at www.sesamestreet.org/autism

But for now, that's it.

And in case you were wondering... 

I don't expect this announcement of who I am and where I work to change my Facebook page or blog much at all.  

Wifey will still be wifey... The king will still be the king or his majesty.  You still probably won't see their faces.  

And I'll still be Autism Daddy or AD even though now you know that I'm Frank who works at Sesame Street.

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!!



Tuesday, September 22, 2015

An Update on the King's School & School Bus Situation...


I hope you enjoy this long rambling video blog post that I recorded on my drive home this evening. 

 In the video I give an update on how the king school and school bus situation or working out. 

Sorry it's so long and I'm babbling so much. And the cameras a lot shakier  than last time because there was more potholes on my route this time.  :)




Friday, September 18, 2015

Nurse on the king's bus quits after 1 day!?! Are u kidding me.





Watch me rant on my drive home from work this evening about how the nurse on the king's school bus that we fought for and that our school district interviewed & hired quit AFTER 1 TRIP TO SCHOOL WITH MY SON!!!



Are you F--king kidding me?!



The only mistake I made in the video below is that I called her an RN but they only were required to supply an LN...



Anyway enjoy my exasperation as I'm stuck in traffic








Thursday, September 17, 2015

The King's EEG Results & a Rough 1st Day Back

Thur 7:48pm -- I know after all of those crazy hospital stories I owe you guys an update on the results of the king's EEG. 

However, there's not really much to tell. 

He had six decent size seizures during the second night while hooked up to the EEG!

Boo for seizures!  Yay for the fact that they caught them on the EEG!

They all came from the right side of his brain which gave the doctors a better idea of which medicines to try next. 

So he's going down on one anti-seizure med and up on a new one over the next month and then we head back to the neurologist's office. 

I'm not even going to mention the names of the meds because I know I'll get a bunch of horror stories in the comments with whatever med I mention. 

So anyway last night he got his first dose of the new med and, of course he has a really rough first day back to school. 

Lots of hitting and a rather bizarre pee-pee accident / incident. 

But no seizures and no naps!

Did the new med cause the bad behavior?  Who the F knows!

Is the new med the reason he had no seizures or naps today?  Who the F knows!

Is he having any side effects or feeling weird on the new med?  Who the F knows!  If only he could tell us how he's feeling!


What I do know and what I can tell you is that non-verbal autism mixed with severe intractable epilepsy really truly sucks major balls!!

And I'm POSITIVE that if the king could talk he'd say the same thing...

THE END. That's all I got tonight. 

I'm heading to sleep as soon as I get his majesty to sleep. 

I still need to catch up on my sleep after 2 days with almost none. 

I was literally falling asleep at wheel while in traffic on the way to work this morning. 

Goodnight all!

zzzzzzzz

Wednesday, September 9, 2015

Day 1 School Recap: a decent day & a school bus clusterf**k

Decent first day of school (at a new school) for the king.  He definitely showed them all his tricks to try & avoid doing any work (hitting, throwing things, etc) but the teacher & staff are really great and seem used to and well equipped to handle his behavior. 

The school bus situation on the other hand was an absolute clusterf**k. 

Bus showed up 45 minutes late, we'll chalk that up to first day scheduling. I'll give them a pass on that. 

The bus shows up, the nurse is on the bus, yay!, but they say "we've got a bit of a problem, there's not a seat for your son"

And there wasn't. 

It wasn't that there was too many kids on the bus. It was that they physically pulled out a bunch of seats.  

Hours later I deduced that probably had something to do with the nurse. Someone probably  saw a nurse on his bus order and maybe they assumed he was in a wheelchair.

We were planning on following the bus for the first day anyway. So we ended up driving him to school. 

I think deep down the king was looking forward to the bus ride since we hyped it up so much so maybe that started his day off on the wrong foot?  Although he was extremely happy in the car ride up with mom and dad  

Anyway he ended up being 45 minutes late but the parking lot was still filled with buses so lots of the buses had time issues on the first day. 

By the way this busing clusterf**k has nothing to do with the new school. It has to do with our city's school district (remember the king goes to school out of district) and the school bus company. 

So after dropping him off and chatting with his new teacher wifey and I went to a diner near the school to lick our wounds and start making some phone calls. 

And without going thru all the details...
As we expected after multiple phone calls and voicemails absolutely nothing got resolved before the end of the school day so we ended up driving him home too. 

And we are not sure if and when the bus is coming tomorrow. 

We know this will all get resolved. We've heard from lots of parents around here that the busing is always a clusterf**k the first few days.  With all that being said it was a bit of a stressful day. And I only planned to take off for the first half of the day but I ended up taking off the full day. 

Alas, tomorrow wifey is on her own because luckily this daddy needs to go to work tomorrow. 

:)

My prediction is that this won't all get resolved and the king won't get into a good groove with school until the end of the month cuz he'll be out a lot between Jewish holidays and his upcoming overnight EEG. 

Anyway, all in all a decent day for the king but a stressful day for mom & dad. 

And I should feel fine saying "a decent day" for the king but sometimes I feel like there's so many people in our lives that are rooting for us and the king.  Between family, friends and AD followers it feels like there's a TON of people invested in his majesty and they all want to hear good news. 

"How was his first day?" Wifey was getting calls and texts like that throughout the day. They want to hear good news.  And "a decent day" isn't what they want to hear. 

That's my problem though. I gotta get over that. Deep down a decent day was what I was expecting but sometimes the pressure to wanna give people good news gets to me ya know?

Anyway that's all I got..

Wow this blog post took a left turn at the end there!

THE END!

Sunday, September 6, 2015

A Sucessful Sat Outing To Greenwich Village, NYC w/ PICS!

Even though the king has been really rough behaviorally lately wifey came up with today's plan:

She said
"I've been talking to him a lot about Greenwich Village lately and also he's shown some interest in that Joey Ramone book that's been laying around, flipping thru it. And there's a new Joey Ramone mural near the old CBGB's. Let's walk around Washington Square Park, let him see some street musicians. And then let's stop at all the murals and take pics. There's also a mural of Donald Trump as a pile of poop down there. We gotta get a picture of him by that."

I've written before about how wifey enjoys taking very artistic pics of the king in parks, museums, historic places, against murals, etc.  She calls him her muse…  At first I thought she dragged him to do this, but lately I've actually witnessed him kinda posing a few times and smiling and/or looking at the camera on demand!

So I was game for this excursion, but I warned her about how rough he's been this week and how crowded it can get down there. 

She said "let's go in with low expectations. The weather is beautiful. The city is usually pretty empty on Labor Day weekend.  And the parking gods are usually always on our side... we take a nice drive. If we're out of the car and walking around for 90 minutes total we'll consider the day a success."

Well we were out of the house for 6 hours total so I'd say that was a success!    only the last half hour, the drive home was really rough with the king pulling wifeys hair for most of the ride. 

We left the house about 1:30pm and drove straight to Washington Square Park and the parking gods were with us and I found a great spot 1/2 block from the park.

He enjoyed these street musicians...



Thought about going in the fountain (which we totally would have let him!)


got the history of the arch from mommy...


and took in another street musician...


Then we stumbled across street vendors and had to pick up this shirt for the king…




Then while wifey went to get the king ice cream from a truck I started waking with him to the car and he plopped down on the sidewalk to play with the CitiBikes. 

Wifey snapped this pic of me trying to negotiate with him to stand up....  



Seconds later he tried to bite one of the tires and we thought about Purell-ing his mouth when we got back to the car. 

And then we just drove around looking for cool murals to take pics in front of. 

Our destinations were the Joey Ramone mural and the Trump poop mural but if we saw any cool ones on the way, I'd double park the car and we'd get out and snap pics of his majesty.

Here's one that was close to where we parked by Washington Square Park






Then there was this large bizarre anti everything mural that had lots of details...

he's playing with the granite stones/pebbles…  (he almost snuck one into the car and would probably have eaten it!)




and here's the Joey Ramone one around the corner from where the old CBGB's used to be… yes wifey and I both went there back in the day…  :-)






And here's the Trump as a steaming pile of shit mural...

i had to get a selfie with Shitty Trump!






And then we had a late lunch at Katz's Deli where he tried a knish for the first time ever…and tried to pull that pic of Dom Deluise off the wall…

Wifey and I split a pastrami on rye… and I said "I'll have what she's having…"  You have to say that at Katz's  :-)

And parked next to our car by Katz's was this old Bart Simpson mural...


That's it… By that point it was 5:45pm.  And we headed home…  

And the drive home was rough, but overall the day was a success and the king and I got to do something that wifey wanted to do…

Cuz as they say happy wifey, happy lifey

That's it… 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?  This way I can make a little money.  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, September 4, 2015

A Recap Of Our Afternoon... With PICS!

You know it's a rough day when I say to wifey

"I'm just gonna take him for a drive"

"Where to?" she said

"I dunno, I just wanna get him in the car and strap him in..."

I took him out solo for about 2 and a half  hours, and wifey stayed home to get some things done.

I drove to Burger King, a book store, and the supermarket... and I... drove...to each place very...very...slowly...


Here's him in the bookstore. We're trying to be more age appropriate with him lately but he still gravitates towards his old toddler favorites...



At the supermarket we stopped to get his microwave popcorn...I had a hunch that if I got him to eat a bag of the really awful, extra buttery kind



 it would reset his love for popcorn which has been waning lately...and maybe would reset his mood / behavior some... I know, crazy right?

While in the supermarket he started getting very spitty and very handsy...  So i had to walk him around the store with his hands on the cart and my hands over his hands so he woulnd't reach out and tap some bald dude on the head...

He saw a bag of green grapes and indicated that he wanted them.  Grapes are bad for dogs so we phased them out when we first got Paula but he's had them at a few summer occasions when Paula wasn't present and reestablished his taste for them.  So I put the bag of grapes in the cart and he wants to dive in...

However, wifey's got me trained, all fruit must be washed first, especially non-organic fruit, and preferably washed with a "fruit wash" not just with water.

I was being a cheapskate since wifey wasn't with us ;) so these were non organic grapes...

 It wasn't easy, but I keep him off of the grapes until we reach the car... 

Once in the car I look around, no fruit wash, or course, but not even a bottle of water... but look wifey left an unopened can of seltzer in the car...

So there I am putting grapes in a bowl (of course we had a bowl in the backseat) and washing them with seltzer and then dumping the seltzer out the window...

I must've refilled the bowl, and done the selzter cleaning bit 4 times on the way home... I almost pulled over on the highway to do it cuz when you find something that the king wants you ride that hot hand til it's done...

So he eats the ENTIRE BAG OF GRAPES by the time we got home... 



although, again, I was driving...very...slowly... to kill time...

When we get home wifey is out (smart lady) and I immediately cut up a banana and put a dollop of peanut bitter on each piece, but his majesty isn't interested.

Instead he wants to take his pants off, take the pictures off the wall, pull on the light fixture in the dining room, butt his head against the TV, etc, etc... just general jerkiness...

This is the kinds of jerkiness we've been dealing with this past week along with increased aggression towards us and others...

So I then make the extra buterry extra bad for you microwave popcorn...

He shows no interest.  But then I literally quickly shove a piece in his mouth...

And as I expected... "YUM... YUM...YUM...  He eats half the bag and then starts alternating beyween  a handful of popcorn and a piece of banana w/ PB...


After an entire bag and a banana and a half w/ PJ he crashed...

And now he's taking a nap



We will see if I was right... Maybe the popcorn will reset his mood and the jerky king will be gone?

Doubtful but I was able to kill 3 hours and give wifey a 3 hour break and now he's napping and I get a break...

We will see what this evening brings...

THE END 

A Rough Week For the King & Wifey


Fri 11:57am -- The king had his roughest week behaviorally in a long time this week and wifey had him by herself for most of the week this week.  He's been extremely hyper and is getting into everything and he has to be watched and redirected every waking moment of the day. It's a throwback to what he was like when he was 7 or 8 years old (READ) except now, at 12 he's a lot taller and a lot stronger...

I was scheduled to have a half day of work today for the labor day weekend and was supposed to get out at about 1:30pm.  However, this morning I took the other half off to give wifey some respite.  

And already he's done something new that he's never done before (and not a good new thing). 

He went into the downstairs shower and turned the hot water on. If I didn't get there the water would've turned scalding hot a few seconds later. 

And the timing of all this rough behavior week couldn't be worse.

He had a rough last few months of school where he was real tough behaviorally. We kept him out of school over the summer and put him in special needs camp 3 days a week instead and he was a little better. 

And last week on vacation it was no picnic but it was even better. 

However this week has been the worst in a long time. 

So what kid can we expect next week for his first week in a new school and first week taking a bus to & from school?

He's gonna make quite the impression next week if he's acting like this. I wish he'd let them fall in love with the real king for a few weeks before having a bad week and lashing out.  I have a feeling that it's gonna be rough though. 

And I hate to admit it but when he has a few bad weeks in a row wifey and I immediately start talking about whether it's time to start tweaking some of his behavior meds. 

We don't want to be so quick to resort to that but we've seen huge successes in the past with certain meds and certain tweaks.  

I've written often on here about his "summer of rage" in 2011 and how meds brought him out of that (READ).

So we don't want to be so quick to tweak meds but we also don't want to hear about a teacher or aide at his new school getting a black and blue from our 5' 3", 95 pound preteen. 

We are finally due to get his overnight EEG done on September 14th so we will wait for that because they will probably be tweaking his meds anyway based on that. And lots of seizure meds are also mood stabilizers so maybe he'll reap some benefits there. 

And I know some of you will ask have you seen an increase in seizure activity this week?  Can that be attributing to the rough behaviors?

This is gonna sound crazy but I actually think it's the opposite. I think he is better behaviorally on the days when he has seizure activity. And it's not that he sleeps more on those seizure days. He just seems calmer...less hyper. 

The later part of this week we've seen no seizures, so therefore less naps, and he's been awake and hyper and crazy for more hours throughout the day.

It's bittersweet cuz wifey will tell me about their crazy rough day and ill say "but at least he had no seizures..."

That's about all I've got to say here... This autism life ain't no picnic boy, don't let anyone try to fool ya.. And adding epilepsy into the mix just makes it that much harder. 

And while everyone else is looking foreword to their 3 day holiday weekend wifey and I are kinda dreading it. We've got 3 days at home with nothing on the agenda and that alone is scary. 

Let's hope he has a bit of a turnaround this weekend. Just give me the king dialed up to 8 instead of the king dialed up to  11 and I'll be happy. 

THE END

AD OVER AND OUT...


-------------------------

  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  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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