Tuesday, December 30, 2014

2014 -- The Year In Pictures

Here's the year 2014 in Pictures....  Pictures of our Autism & Epilepsy Life...

Click on any of the pics to bring you to its original FB Page with its original caption & comments...

You can also view the entire album on Facebook by clicking HERE

Which one is your favorite & why?

Sunday, December 28, 2014

3 Different Ways of Looking at the Same Picture

I took a picture of my 11 year old son with autism sitting on the couch watching tv at about 8:45am this morning.

Here it is...

Here's what a parent of a typical kid might think when they see this picture...

There's a kid calmly sitting on the couch watching tv. 

Here's what a parent of an autistic kid might think when they see this picture. 

Wow, look how good he's sitting and how calm he is. And his posture is great. And he's doing "criss cross apple sauce" with his legs which means he's got good muscle tone. 

Here's what I was thinking right before I took this pic. 

Boy he slept like crap last night. That's why he's so calm watching tv. He's probably exhausted. Maybe he'll nap after this show. And then I can nap and get rid of this headache I've got from being up half the night with him. 

Why is he touching his mouth?  He's been picking at his front teeth all week. Wifey needs to make a dental appointment early in the new year. Oh that's gonna be fun... NOT...

When was the last time he ate?  15 hours ago?  He's getting way too skinny. And his appetite sucks. Maybe the teeth bothering him are affecting his appetite?  

Let me put the coffee on and get rid of this headache. 


That's 3 different ways of looking at this pic..


Tuesday, December 23, 2014

One of the Perks of Autism: Kyle's Favorite Christmas Gifts

Tues 9:16pm --The king used to be OBSESSED with this globe. 

Then, like with most things, he lost interest. 

So wifey had taken it out of rotation for a long time. 

Today, while cleaning up a bit for our Christmas Eve dinner I stumbled across it and said "I wonder if Kyle would be into this again..."

Well he's been carrying it with him from room to room since about 6pm. 

Not playing with it appropriately, per se, but not destroying it either. 

He even wanted to bring it up to his room at bedtime tonight. 

He might've slept with it if I let him...but I put it on his dresser across the room from his bed. 

"this way you can see it as your drifting off to sleep and play with it as soon as you wake up in the morning"

Is this kid easy to shop for, or what?  


I've said it before and I'll say it again...

This is one of the few "perks" of autism in my mind. 

In fact in my old blog post about the "11 Benefits of Autism" I wrote 

BENEFIT #8I DON’T HAVE TO BUY THE LATEST TOY / VIDEO GAME…My kid isn’t superficial.  He doesn’t whine that he doesn’t have the latest Wii system.  He doesn’t sit on Santa’s lap at Christmas time with a laundry list of things he has to have.  He is extremely happy with the same books & toys he’s had for years.  He rips / destroys his copy of ”Brown Bear, Brown Bear” and he gets a new one as a gift from an old friend.   His toddler cash register gets lost and his Grandma buys him a new one.   In fact, the wife will rotate old toys in & out of his room and he is thrilled when an old favorite is brought back into the mix. (Toddler toys are still HUGE in my house.) 

So this year his two favorite Christmas toys so far are...a globe that's been sitting in his closet for 7 years.... and the box that the sesame Christmas outdoor ornaments came in. 

That's his second favorite. 


It's a good thing too cuz I don't think we bought him anything else. He might have nothing else to open from mom & dad on Christmas morning. 

I bought him a new mattress earlier this month. Does that count?  He seems to love it. 


Happy Holidays everyone!

Sunday, December 21, 2014

Autism & Holiday Traditions: 5 Adjustments We've Made Along the Way...

The day we got the tree in 2013

(originally written & published on December 21, 2014)

Wifey and I did pretty ok with the holidays the past 2 years. We bought the tree early, I got the outside decorations up early, we got tons of our shopping done early, and we even got our holiday photo cards out a week before Christmas where we usually get them out on 12/26 or later.  ;)

We've had a pretty good holiday season.

And after 11 years I feel like we've finally figured out what parts of the holiday traditions we can do away with because of autism (and epilepsy) and what holiday traditions must stay / are non-negotiable regardless of how hard they are on Kyle. Here's some examples.

1) Wifey grew up with a real tree and she wants a real tree and she wants to decorate the tree.

So we drag Kyle to pick out a real tree every year and he deals with it ok depending on the year or the weather, but he's got to suck it up...getting a real tree is a non negotiable.

And putting lights and decorations on that tree is a fav activity for wifey so we will redirect (ie yell at Kyle :) 5000 times if necessary to stop eating the tree.

But the idea of your kid helping decorate the tree? That's a tradition that we did away with since he never showed any interest.

2) Visiting Santa, getting a pic with Santa?  We gladly and without hesitation gave up that tradition a LONG time ago. Kyle doesn't get Santa & we never got a good pic...although last year we got a decent shot with Kyle and Santa at a special needs holiday party went to. That Santa was extremely patient...  :)

3) Getting out a holiday card with a good pic of Kyle is a non-negotiable. It's happening.

But what we did tweak was we gave up trying to get a holiday shot of Kyle in front of our tree or in an Xmas sweater.

For years we'd have an Xmas photo session with Kyle. We'd plop him in front of the tree in a festive outfit and he obviously wouldn't cooperate or look in the camera or anything. We'd literally take hundreds of pics looking for one good one.

And the whole process from the pic taking to the pouring over the pics on the computer was exhausting. So for the past 2 years we look through our pics throughout the year from our iPhones and pick out the best 4-5 that capture the essence of Kyle and pick out a collage style card and be done with it. This year we got 3 pics of Kyle on the beach during the summer cuz that is his element. ;)

4) Christmas Eve

Since we got married in '97 Xmas Eve was always at our house. Long story as to why but it just is. It's tradition. :)

And wifey and I both come predominantly from Italian roots. And with Italians Xmas Eve is the fish holiday. Don't know why. It just is.  It's a tradition.

Some Italians say the tradition is that you're supposed to make 7 different fishes.

Wifey never followed that 7 fish craziness but she did cook fish.

Xmas Eve was always pretty mellow. Just her folks and my folks coming over for dinner for lots of different fish dishes.

Now I don't like fish. Neither did my dad. So there'd always have to be a non fish dish for us heathens.  :)

Anyway the Xmas Eve tradition of wifey cooking fish carried on for years...even after Kyle was born and then after Kyle became the crazy autism king y'all know and love.

Wifey was always slaving away making fish dishes in our small kitchen. And most of the fish that she made was the kinda stuff that you couldn’t make way in advance. (Lobster tails, shrimp, crab legs). So Xmas Eve especially after king Kyle was always a high wire act of cooking and sweating and stressing out.

Then about 4 years ago we invited one of our good friends from high school to join for Xmas Eve dinner with her husband and her 2 autistic sons.

And that added another level of difficulty to the proceedings. Not because any of the ASD kids were really any trouble, but mainly because like many autism families who are in tuned with their kids... they had maybe a 2-3 hour window maximum and then they had to leave before their kids melted down.

And wifey would be slaving in the kitchen with crab legs boiling and not really getting to spend any time with her best friend and family who she only gets to see maybe 2-3 times per year.

So 3 years ago during the Xmas Eve proceedings she called me into the kitchen. And with her hair all frizzy and mascara running due to being in a hot steamy kitchen for hours she said to me "I'm never doing this again. Next year we're ordering take out. Your choice."

And I said "Outback Steakhouse!"

So 2 years ago we threw the fish tradition out the window and ordered from outback. And it was a lot more relaxed for us. Our folks seemed to be ok with it to. Many of them ordered fish dishes anyway.

And last year we did it even better and got it catered from an awesome local Italian deli (chicken francese, pasta with broccoli rabe, etc). And we sent it all up buffet style in our kitchen with paper plates and said "serve yourselves" and wifey and I got to spend a lot more quality time with our friends before they had to bolt.  So we broke the fish tradition. And everyone seems to be ok with it although who knows what our parents say behind our backs. LOL :)

5) Making Kyle open presents.  That tradition died a long time ago. We gave it up. He's got no interest. So when someone hands us a gift for him we'll open it for him and try to make a big fuss, but we pretty much leave Kyle out of it.

And Christmas morning there's not a big gift opening at our house. Since he doesn't get Santa he gets lots of gifts along the way from us and others but there's not a big Xmas morning gift opening.


Those are the 5 things I wanted to talk about. And as usual, these tweaks are almost all about me & wifey. And that's because we are the ones with the holiday traditions. As stated above, Kyle doesn't seem to get the holidays.  So wifey & I are the ones with the "baggage" of these traditions...and we are the ones who needed to do most of the adjustments...

And it's still not easy by any means...  Going to wifey's sister's house on Christmas Day can be a true high wire act. And throughout all these holiday festivities there are still painful reminders of how different our lives are... And how removed from the festivities Kyle can be sometimes... Last year he fell asleep on his aunts couch on Xmas day at 8pm and that's when the real fun started...his cousins started playing video games & board games, etc. And our Kyle wasn't in the mix. 

But again, that's painful stuff for us.  Wifey and me. Kyle doesn't seem to care. For the most part he's happy go lucky. 

So wifey & I have to learn to seperate what's hard for us VS what's hard for Kyle. 

11 years in and it's still not always easy....but these 5 adjustments have made it a little easier....

Maybe this year we'll discover a 6th thing between Christmas & New Years...




-- 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, December 2, 2014

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

(originally written December 2, 2014)

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!!


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