Tuesday, December 2, 2014

I Want to Go on an Autism Social Media Blackout & Why You Should Too...

My wife bought me the first version of the TiVo DVR way back in 1999. 

We were extremely early adopters because we are tv junkies and because we don't like to watch commercials...or watch the news...

I hate the news, I hate politics, and I try to avoid them as much as possible. 

I'll gladly binge watch season 2 of "30 Rock" on Netflix for the 8th time then watch live television at 10pm or 11pm on a weeknight. 

And for the first 9 years we had the TiVo, without even realizing it I was going on major news blackouts. 

For a couple of years there a major news story would happen and days, sometimes even weeks would go by before i heard about it... 

And for the most part i was  fine with that..

For example, remember when the Chilean miners were trapped for 69 days and the world was riveted to their story?  Well I didn't hear about it until maybe day 41.  LOL

And as I said for the most part I was fine with my self imposed news black out. 

I was living my life, dealing with the good & bad of my own stuff, checking the sports news, watching my shows on TiVo, fast forwarding the commercials, and avoiding the real news. 

I could tell you the ins & outs of the baseball steroids scandal, who the celeb guest was on Howard Stern were that week, but not the first thing about the 2004 presidential primaries. 

And then Facebook came along and I jumped on the FB bandwagon in 2008 just in time for the elections and then I couldn't avoid the news cuz all my friends were spouting political stories and opinions while I was still posting old pics from grade school. 

And so for awhile there, due to Facebook  I couldn't avoid the news and people's opinions. And I was starting to be more up to date on the news and the topics of the day, but I didn't feel any better about myself...

 In fact sometimes knowing what's going on in the world is down right depressing!  And know thanks to Facebook knowing that my friend's political & religious leanings are so different from mine can be down right eye opening!

But no one in my FB news feed was talking about autism. 

So in April 2011 I started the autism daddy FB page and slowly found myself pulling away from regular Facebook and spending more of my time on autism daddy talking about autism. 

And I started reading other autism bloggers & following other autism FB pages and setting google news alerts on autism so I could be somewhat knowledgeable of the autism topic of the day...

And now my newsfeed is filled up with all autism, all the time and it can be very overwhelming a lot of the time. 

And because I'm getting all the autism "news" I'm reading all the good stuff and the bad stuff as soon as it happens. 

The Issy Stapleton tragedy, the CDC Whistleblower story, even the uplifting Dear 'Daddy' in Seat 16C letter/blog post that went viral...

...all of these stories felt like HUGE news stories to me. 

And they were huge news stories to us in the autism community who are active on social media and who actively seek that news out...the autism news...

But they are barely a blip on the radar to the general public.

And part of me wants to go back to them being a blip on my radar. 

Perfect example. My uncle has a 12 year old son with moderate-severe autism. We were chatting while both our sons were getting their special needs swim lessons a few weeks back. 

I mentioned the Kelli Stapleton verdict and that there was now another case where a mom killed her ASD son by throwing him off a bridge. 

And he had no idea what I was talking about. 

He hadn't heard about either story. 

No my uncle is not Internet savvy, he's not on Facebook but he LOVES the news.  Fox News or CNN are on pretty much all day in his house. 

And he hadn't heard about either story. 

And in that moment when he told me that I was extremely jealous. 

Jealous that he could have an autistic son, be knowledgeable in all things relating to his son, be an active autism dad, and a champion for his son's rights (attending iep meetings, etc) without being entrenched in the daily craziness that is the "autism community" on social media. 

Now I love you, autism community, I swear I do, :) but there's some weeks where I don't want to read about another missing autistic kid, or another tragedy, or even another happy story about a kind waitress who was nice to an autistic kid and cut his burger the way he liked it.

There's some evenings when I'm in the living room hanging out with Kyle after a typical work day and I'm feeling annoyed or anxious about something. 

And I'll have to stop and think "why am I in a bad mood right now?  work was pretty good, Kyle is being good and had a decent day behaviorally, what is stressing me out?"  and then I'll realize it's because of some horrible autism news story I read earlier that day or some miracle autism cure story someone sent me that I'm feeling guilty for not trying on Kyle.

But because I am now so entrenched in the autism social media scene I am forced to see these stories...

And I've come to accept that. That's my problem.  I started this blog.  I have a 100k followers on Facebook, I feel like I have somewhat of an obligation, a self imposed responsibility to be pretty up on the latest news, good or bad, within the community.

But I'm not as up to speed on the autism stories of the day as many other autism bloggers out there.  I get in a funk reading a few stories a day...I don't know how some of them do it, autism 24/7 without going crazy...

But you folks?  You average, run of the mill autism parents?  You don't have to do this!

If I wasn't Autism Daddy, if I didn't have this blog & platform, if I were you, I swear I would try to TiVo my news feed to only feed me what I want to read about... Sports, tv, movies, etc, with maybe a teeny bit of autism thrown in. 

If I were you, I would turn off the autism settings on my life...or at least turn them way down so maybe I didn't hear about the Kelli Stapleton story when it first happened....maybe didn't find out about it until day 41 or ever...

If I were you I would go on an Autism Social Media Blackout... at least once in a while... maybe a couple of times a year...  clear your head from all these autism stories that nobody else knows about except us autism news junkies down in the trenches.  Readjust your Facebook feed to only feed you entertainment stories, and sports stories, or politics if god-forbid you're into that...  :-)

Or even better get off of social media altogether during your blackout...

The holiday season is a perfect time for this.

Go, take a break... I'll be here when you get back...

And me?  I've got to get better about reading all this stuff that y'all send me and not letting it affect my day because I don't want you to stop sending me things.

And I've already written previously, that "I'm Different Than Most Autism Pages & Blogs.  I don't like reading or talking about autism that much"

So I probably won't be breaking any autism news stories on my FB page.  I try to mainly share stuff that's going on in my little house at the corner of Autism Avenue & Epilepsy Street ...my personal stories, and challenges and rantings and celebrations or little articles with advice about what might've worked for us.  Y'all seem to like the more personal stuff, and I figure you're probably getting your fix on the real autism news of the day from other autism sites or blogs or FB pages you're reading...

And once in a while I'll write a post on one of the biggie autism news stories like Seinfeld, or Kelli Stapleton, or Toni Braxton.  I'll mainly throw my hat in the ring and write about those when I feel like my opinion or take on things is different or unique from most of the other bloggers & voices out there.

But for the most part I'm gonna write about my autism life and leave the hard hitting stories to others.

And while I won't go on my own Autism Social Media Blackout you may find that I'm posting & blogging less this holiday season.  Sometimes I need to unplug too, delete the FB app from my phone for a few weeks to force myself to be less "Autism Daddy" and more dad to Kyle and husband to wifey, ya know what I mean?

Wow, this has been a LONG, rambling post!  I hope this makes sense and you get what I'm talking about.

Have a joyous holiday season and enjoy your self imposed Autism Social Media Blackout!  I highly recommend it!





If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link 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, November 28, 2014

Thanksgiving was a C+ but we're gun shy for today...

Fri 10:27am -- Yesterday, Thanksgiving Day was a solid C+ in Autism Daddy land. 

The first part of the day was a solid A-  

The king was relaxing & cooperative at home while while wifey cooked a bunch of the side dishes that she was bringing over her sis's house and while I helped clean pots & pans and packed his gigantic bag of supplies that we brought with us. 

He was good for the first few hours that we were at wifey's sis's house although he was sorta keeping to himself and playing on his iPad.

But the second half of our day there was an F. 

He was happily hitting everyone that came anywhere near him. Or he would go up to my father in law, seek him our, kiss him on the forehead, and then slap him in the chest... HARD. 

My 75+ year old father in law who has heart problems and had heart surgery a few years back shouldn't get hit. 

No one should. 

So we had to make a hasty, quick exit...holding both of his wrists as we said good night to everyone so he couldn't get an extra slap in. 

What brought on the hits?

Again he wasn't raging. 

He was happily hitting and QUICK. 

His hands are lightning fast. 

But what brought it on?

Who the F knows?!

Maybe the combo of him eating virtually NOTHING most of the day combined with the fact that he didn't get in his late afternoon nap that he's become accustomed to. 

That's the nap that we aren't always sure if it's seizure induced, side effect of meds, or just plain old puberty / growing pains induced. 

Regardless he didn't have an opportunity to nap and showed no signs of needing one PLUS we tried to get him to eat a decent meal most of the day and he wouldn't take a bite of anything substantial. 

So no naps + hunger = hitting?


Who the F knows?!

All I know is that it put kind of a damper on the day...

And even though the family was fine with it all...

"Guys, it's fine. He didn't hurt me."

It's just not right or polite to let your kid hit his relatives. 

In fact, in hindsight we probably let it go on too long. He got in way to many good shots to several different people before we pulled the plug and got the hell out of there. 

And now, today?

We're supposed to go to my sister's house for an early afternoon dinner.  We're picking up my mom and driving up there. 

My sis lives 90 minutes away 

But wifey and I are gun shy. 

My sis has 2 NT daughters. 

8 & 10 years old. 

If Kyle feels like hitting today, hitting his young cousins, what do we do?

Last night when we got home we seriously talked about me and my mom going and leaving Kyle and wifey at home. 

"If he shows any signs of that kid from last night then we probably shouldn't take him." I said to wifey. 

And my sis is great. She said "of course bring him...we can deal with it, the girls will be fine"

But it's just not nice to have an 11 year old hitting younger kids. 

Luckily it hasn't happened before. When the king is in a hitting mood he normally saves his wrath for the adults and spares the kiddies. 

But, he was in RARE form last night. So we are gun shy. 

It's now 10:57am and his majesty is getting an extended morning nap. And we have an hour or so to decide what to do. 

We are leaving towards rolling the dice and going...or at least I am...wifey seems a bit more apprehensive...

But I think we are gonna go for it... And hope for the best... And if things go sour we'll pull the plug, earlier than yesterday, and make the 90 minute trek home. 

Sorry this post is such a downer... But that is our reality right now...

Today's Friday. When does work and school start again?



Sunday, November 23, 2014

Black Friday Shop on Amazon & Help Autism Daddy

I got into a car accident last Wednesday.  I was by myself driving to work.

Technically, it was my fault.  I'm fine but my car is TOAST and I didn't have collision insurance on it cuz it was 12 years old and cuz I was being a cheapskate.

I got the estimate in and the damage isn't worth it to fix.  It'll cost more to fix than the car is worth.  I just need to sell it to the junkyard and think about whether to buy another one.

I can't really afford this right now... (Or ever)...

Timing sucks around the holidays...

Anyway, how can you help? Go Shop AMAZON by entering the Amazon website by using this specific link (http://www.amazon.com/?_encoding=UTF8&camp=1789&creative=9325&linkCode=ur2&tag=a050ef-20) or by clicking on the specific ads/links below.

It doesn't cost you any more, but because I am an "Amazon Associate" I'll get a little kickback if you shop using these links…(basically a small percentage of each item purchased, a small commission for referring you)

So if you love reading the AD Blog/FB Page and if I've helped you a little along the way please consider helping ol' AD a bit...

You'll be helping me earn a few extra bucks that'll go towards my son's expensive music therapy & occupational therapy sessions & now to help me buy a new/used hunk of junk to drive to work in Manhattan every day!

Thanks, as always for all your amazing support!

Love you all!

PS, Oh, and as for the special deals below, I can personally recommend Amazon Prime.  I LOVE Amazon Prime... I've had it for years!  The 2 day free shipping pays for itself with a few purchases, the movie & tv service is on par with Netflix and now they added a great streaming music service...

And I have a few friends who've used the Amazon Cell Phone/Service Plan site and they say it's great!  They claim it's faster, easier, and cheaper than shopping thru your phone carrier...

Ok, my sales pitch is over...


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Sunday, November 16, 2014

This Is What Epilepsy Looks Like... Not Scary, More Sad

The king's been having a bit more seizure activity the past few days. He had maybe 7-8 of them that we saw yesterday. 

People often wonder how we can live like that...  

In think it's mainly because when many people think of seizures they're thinking of the grand mal / tonic-clonic seizures you see in the movies where the person loses consciousness and convulses on the floor for a few minutes foaming at the mouth.  

Thankfully Kyle has never had one of those. At night in his sleep he has had a few scary looking 1-2 minute seizures where his eyes roll back and he mildly convulses. These are called "complex partial" seizures and thankfully they are rare for him. 

What he has more frequently, a few a day these days, are short, 10-20 seconds max incidents that sometimes just look like he's drunk with a silly smile on his face. They are short and mild, but they make him sleepy and therefore affect his quality of life...

Here's what a typical Saturday in the day in the life of a an epileptic child named Kyle looks like. 

This was yesterday. 

Saturday 8:42am
Still sleeping....in our bed, of course....  :)

Woke him up at 9:30am so he could make his swim & music classes on time....

He had one or two small, short seizures before we left the house. 

Then after music therapy and a quick trip to costco (where he sat in the cart) we drove home.  He had a 20 second seizure on the drive home and...

Saturday 2:58pm...
Sleeping again... 

This nap lasted 90 minutes...  He got up around 4:30pm and was himself for the rest of the afternoon / evening... But had a few more seizures in the evening and before we could get his dinner in him...

Saturday 6:28pm
Another 25 minute power nap...

He was up after 7...  And had  a small dinner... 

His appetite is a major issue these days. He's lost 7 pounds since the summer. 

He was up and fine for the rest of the evening. He threatened to nap a few other times, but then was up as a pup until close to 11pm and after all that napping we have to decide whether to give him melatonin to get him to sleep at nighttime.  

He went to bed after 11, without mel last night. 

And then throughout the night we've got a seizure camera / monitor on him that records all his movement throughout the night and alarms us if the movement goes over a certain length of time. 

It usually triggers about 2-3 alarms a night which are thankfully usually false alarms...

Just him flopping around or sitting up and readjusting during the night...

Like this...

Sunday 2:16am

Then somewhere around 5am eachnight lately he comes in our room and climbs into our bed and finishes his slumber. 

That's where he is now. It's Sunday 9:21am. Wifey is downstairs cleaning as we are having family over for brunch at 10:30am to celebrate her parents anniversary. And he's lying next to me in our bed sleeping as I write this on my iPhone. 

That's it. I just wanted to quickly share what a day in the life of epilepsy looks like around here. 

It's not as scary as you might think...The seizures don't look as scary as you might imagine... And each seizure doesn't warrant a trip to the hospital or a call to a doctor. 

It's not scary...but it's just kinda sad...

An 11 year old sleeping 14+ hours a day is kinda sad... 

And it's a vicious cycle cuz yes some of the seizures make him sleepy, but some of the seizure meds make him sleepy too...

But we're working on it... And making sure he's as active and happy during his waking hours...

Time to go. He's finally waking up!

Over and out. 


Wednesday, November 12, 2014

The King Has An MRI Today

The king has an MRI today. 

Wed 8:43am -- The king has an MRI today.  We're at the hospital right now. It's not because of anything serious (we hope).  It's been scheduled for a few weeks. 

It has to do with his hypothyroidism and his advanced / precocious puberty. (Two things I don't write about much on the FB page / blog). 

They want to make sure that he doesn't have a pituitary issue. 

The king's done a few MRIs in the past...

But because of his autism and epilepsy they are a lot more complicated than the typical kid. 

They need to take about 45 minutes worth of "pictures". 

Because he can't stay still for more than 2 minutes he has to go under general anesthesia to get the MRI. 

But because he has the VNS device implanted for his seizures and that's based on metals and magnets it's a bit more complicated. 

There's only a few hospitals that do MRIs on VNS patients. And even fewer that do MRIs on VNS patients that can't talk and tell them if something feels weird. 

So we are at a big hospital in Manhattan. 

And they turn off the VNS device during the MRI and they use a special MRI machine. 

I just left him. I was in the room with him when the administered the first dose of anesthesia via a mask over his mouth.

I've always played this part during previous anesthesia times since wifey doesn't want to see it...

He always surprises us and does great in hospital settings! 

Today, so far he's done great. He's strong and fought the mask a bit, and held his breath a bit...but I recited one of his fav books "chicka chicka boom boom" over and over and that calmed him down until he fell into an immediate deep sleep in my arms. 

Now we have to wait an hour until they call us in. 

While he's in recovery, but still asleep they are gonna bring an xray machine up and get a pic of one of his wrists to get a bone age test done to see how advanced his puberty really is. 

We've been told he's in stage 4 puberty...4 out of 5 stages. He's 11 but docs have estimated that he's got the development of a 14-15 year old. 

Many typical kids take meds to slow the puberty down. 

But if the results of the MRI show & X-ray no scary reason for his advanced puberty we are just gonna leave it alone. 

When asked what's the worst that can happen, docs talk about emotional problems with kids going thru puberty before their peers... Kyle wouldn't have that problem. 

The only other problem is that he might end up being short. When you go thru puberty quickly you stop growing earlier. 

Our thoughts?

He's already 5' 1" maybe a kid like Kyle being short adult isn't the worst thing in the world...especially for me & wifey as he gets older and stronger. 

Anyway we are in the waiting room now waiting for the call that he is done. 

Please send positive vibes. 



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