Wednesday, October 28, 2015

Defending Why I Call My Son the King -- VIDEO

I recorded the video below this evening on my drive home.

In the video I explain and defend why I call my autistic son the king, which is sometimes short for "King Sh-t"

LANGUAGE WARNING:  I say the actual word in the video:

I hope that video clears things up a bit!  :-)

Also, here's links to 3 older blog posts that I wrote awhile back that give several examples of  why & when we call him King Sh-t.  I guess these were the ones that some people took offense to.

smile emoticon



But now after hearing my explanation in the video, do you find the nickname king or King Sh-t offensive?

Wednesday, October 21, 2015

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

(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

That is where you will find

Monday, October 19, 2015

My Mom Has Alzheimer's & I'm Feeling Mad, Sad, Guilty, & Scared

My mom has early Alzheimer's. This is something really personal and not autism or epilepsy related and not related to the king. 

However, as many of you know, this blog is mostly about me and how I'm dealing with things. And the fact that my mom has Alzheimer's and seems to be getting worse fast is like the elephant in the room in my brain. 

I've written a few times, once recently, that sometimes I'm in a foul mood or kinda down and I can't figure out why. The king is fine. Wifey is fine. Things are happily status quo on our corner of Autism Avenue & Seizure Street. So why do I feel like this?

Because my mom who lives less than a half mile away is losing her marbles. And that makes me feel sad, mad, guilty, and scared  a lot of the time...

Sad because it sucks that this is happening to a 76 year old woman!  Why her, why now?  Clint Eastwood is still directing movies well into his 80s!  My mom's stepmom is 96 and still has most of her mental capacities. Why is this happening to my 76 year old mom. 

Mad because I think there's so much she could've done to prevent it and mad because I think there's so much she could be doing now  to slow it down... But she's a stubborn woman who won't change her ways... who won't eat right or exercise.  (she's overweight but not obese but can barely walk down the block)... who won't challenge herself mentally...  who won't (or can't remember to) take her pills every day.... Pills that could maybe slow this down a bit

Guilty because I get mad about the stuff I mentioned above. Guilty because I lose my patience when I'm with her and she asks me the same question 6 times in  an hour. Guilty because i get frustrated with the way she lives her life.  Guilty that I'm not doing more, that I don't see her more... Especially guilty that I don't want to see her more. 

And scared?  Why am I scared?  I'm scared for 2 reasons...  First I'm scared that she's only 76 and physically is in decent shape, but mentally is going down the drain fast and furious. So I'm scared that she's going to live a lot longer and in the next few years I'm gonna be taking care of a teenage severely autistic "man" as well as my 80something mom. I'm firmly entrenched in the sandwich generation. 

And what scares me even more is that my dad died from Parkinson's disease, my mom has Alzheimer's, and my son had autism. 

Who knows what is in store for me when I get older... But on some days I'm certain that either Parkinson's or Alzheimer's are heading my way. 

So what does Alzheimer's look like in my mom? Well it's the usual stuff of being extremely forgetful. She loses her keys often, she loses her cell phone often, she forgets that she called me three times already on any given day.

But that forgetfulness takes on a scarier tone when it comes to driving. Yes she still has her license. She always only drove within an 8 mile radius of her house. She always barely put 1000 miles on her car in a year. All she would drive to is church, supermarket, mall, and her brothers house and brother-in-law's house. 

But within the last month or so she has now gotten lost coming back from her brothers house and brother-in-law's house.... Places she's driven to a million times before... And because she forgets her cell phone often, getting lost is scary business. 

So my sister and I have to make the tough decision in the next month or so about taking her license away. 

But that won't be easy on her because she barely gets out of the house as it is. 

Because the other thing about Alzheimer's and my mom is that all the quirks of her personality became magnified times 10. 

For example, she always ran late to things and always could barely get out of the house before 1 PM on any day because she had to have her hair, and make up done perfectly and the house had to be spotless before she left. 

And the other quirk of her personality was that she could always make a whole day revolve around one simple activity such as going to the mall to buy a gift. 

But now with the Alzheimer's  she can barely get out of the house before 4 PM on any given day, and when we go to pick her up at 4pm, very often the house isn't really that clean and she's barely dressed and ready to go. What has she been doing all morning and afternoon?

And now her whole day now revolves around the simplest activity. 

"Did you get out today mom?"
"No I didn't get out today because I had to take a bath." 
"Did you get out today mom?"
"Yes I got out."
"What did you do?"
"I went out around 5 PM to go get some milk."

The good thing about my mothers Alzheimer's though  is that she is (or appears to be) happy as can be. Happy and content to be in her house all by herself. And listen to her favorite radio station all day. 

That's the other thing about my mother's Alzheimer's. She has regressed into being a teenager.

 All she does most days is listen to a pop music radio station all day trying to win concert tickets. And all she talks about is listening to that radio station and talking to the DJs. She is on a first name basis with the DJs at that station because she calls them multiple times per day. There's some times during the day when I'm trying to call her and can't reach her cuz she is calling over and over trying to win tickets and is calling on both her home and cell phones. 

When she's not listening to the radio she is watching tv and fawning over young actors. She has been obsessed with Justin Timberlake as a singer and actor for a few years now and her current obsession is Michael Fassbender. 

It all sounds cute and funny, but not when it's your 76 year old mom.  And this is not the way she was growing up. This is not part of her personality magnified.  It's just weird and bizarre. 

"But at least she's happy!  Lots of people with Alzheimer's are angry and cranky!"

That's what wifey tells me when I'm crawling up the walls after I'm in my mom's presence for a few hours. 

There's tons more other stuff going on with her but I feel like I rambled on enough. 

I said early on that my mother could've prevented this by challenging herself more mentally. And what I mean by that is when before my dad passed in 2012 (and got sick with the Parkinson's in 2010) he handled all the finances, he did a lot of the food shopping, he did the majority of the driving, etc, etc. 

When he got sick my sister and I took all of that on for my mother. She barely knew how to write out a check. Maybe we should've forced her to do it all on her own. She was only 71 years old at the time. But she became too reliant on us...

So she wasn't forced to use her brain power let me know what they say "use it or lose it"

And now we tell her to work on a crossword puzzle, or do the jumble in the newspaper, or there's a track right by her house, walk around the track... But she yeses us and it falls on deaf ears. 

Anyway again so much more I can write but I feel like I said enough. 

And she does not have the kind of relationship with me or my sister where she would want to live with one of us. And as I said before she seems happy & content to live in her big house all by herself. 

And listen to her radio station and watch music videos most days. 

Wifey & I try to have her over for dinner at least once a week and even that is a challenge because she's barely on time. 

"Please get here by 6 PM so you can have more time to spend with your grandson who goes to sleep early" (sometimes as early as 7:30PM")

But she'll show up at 6:45pm with no reason or excuse why she's 45 minutes late. 

And after she leaves my nerves are shot and I'm feeling mad, sad, scared and guilty. 

There I go again rambling on again. 

Anyway, I'm going to end it here. And I know there will be some family and friends that read this and think that I'm being too personal and giving up too much information about my mom or how my brain works. And what am I getting out of writing this?

 I honestly don't know. Even though it has nothing to do with autism or epilepsy it just feels good to write it down. And it feels cathartic to put it out there to the worlds and maybe get some feedback from some strangers who maybe are in the same boat as I am... and who have the same thoughts in their head as I do...

So there you go. 

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?  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!!


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.

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...


-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to  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, October 4, 2015

Why Reading "The Shooter Was Mentally Ill or Autistic" Doesn't Bother Me

So the shooting in Oregon.  So tragic.  I rarely watch the news because I just can't handle it.  And I will readily admit that I am not up to speed on this one.

What I do know is that first they said the shooter had mental illness, and now they are saying he might've been on the spectrum.

And when the first quote about the shooter having mental illness came out I saw some people complaining that this was going to give mental illness a bad name.  That saying the killer was mentally ill was going to make people think that all mentally ill people are potential killers, and would make some people who need help resistant to get help.

I think that is all utterly ridiculous.  In my humble opinion, saying the killer had a mental illness is like "No Duh!"

Anybody capable of doing what this guy did is mentally ill!  All serial killers are mentally ill!  Maybe they weren't being treated for it.  But to do the things they did they have to be mentally ill.

So I think that is a total non-story.  And that doesn't upset me at all.  It mostly makes me annoyed that the media and the police are wasting their time determining if the killer was mentally ill.

Of course he was!  And who gives a f--k?!

Now saying the shooter might be on the autism spectrum, or might have Aspergers, that I could see folks getting a little more upset about.  But it honestly doesn't bother me.

Because I don't think people outside of the autism community are focusing on that.  

After one of these horrific acts happen, the news media jumps in and looks at the story from every possible angle.  First they report what happened.  Then they jump into what crazy stuff the killer had in his house.  Then they talk to the killer's family.  Then they dive into his mental background and sometimes lately aspergers shows up in their profile.  Then the funerals of the victims start happening and then people finally start focusing on the victims.

In my opinion, to the general public the part of the story about the killer possibly being on the autism spectrum is just a blip on the radar to the whole story of the massacre.  The general public does not read that and think all autistic people are potential killers.  They just read it as part of the whole picture and then move on.

But we in the autism community get upset, and I get it, but I think us getting upset keeps the autism part of the story in the news longer than it would be otherwise.

People have short memories.  Nobody comes out of these massacres fearing autistic people.  Unfortunately, it seems that nobody comes out of these massacres having learned anything because they just keep happening (and in the USA at a crazy alarming rate).

So that's my take.

Do I think some of these killers were on the spectrum?  Yes.  If it walks like a duck, and talks like a duck, it's probably a duck.

Do I think that the autism contributed to them doing these horrific acts?  No, but I think loneliness, isolation, easy access to guns, and, yes, mental illness definitely contributed to them doing these horrific acts.

And yes, there are some Internet trolls that start these mean "autistic kids kill" facebook pages and we all get up in arms over these pages with good reason.

I just reported one, and yes it was obviously a troll, and nobody in the general public was paying it any mind... just autistic people & parents of autistic people.

And while on this horrible page I saw a news story from some small unknown, nobody reads medical website that the troll had posted to prove his point that autistic kids are killers.  

It was this story "Serial Killers More Likely To Have Autism, Head Trauma, Or Psychosocial Issues" and in it said very clearly:

“It is crucial to note that we are not trying to suggest that individuals with ASD or previous head trauma are more likely to be serial killers or commit serious crime,” said lead researcher, Dr. Clare Allely, from the Institute of Wellbeing at the university, in a press release. “Rather, we are suggesting that there may be a subgroup of individuals within these groups who may be more likely to commit serious crimes when exposed to certain psychosocial stressors.”
So that quote right there goes against the trolls whole idea.

And maybe I'm naive, but I think the general public is smart enough to make that distinction that the quote above makes... and if they aren't smart enough then they are probably going to forget the autistic part of the story anyway.

Anyway, that's my 2 cents.

Do you agree or disagree?

I am sure that you will let me know!



PS Notice how I never used the shooter's name?  That was on purpose.  These people shouldn't get any attention or notoriety.  That I believe.


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