Tuesday, September 23, 2014

10 Things I'll Never Try To Teach My Son w/ Autism

(originally written & published on September 23, 2014)

This is meant to be a funny post. So if you were looking for profound things like "I'll never teach my autistic son to lie" or something noble like that then maybe isn't the post for you. Although if I can't think of enough I may just throw in one of those profound ones just to round it up to ten since that's what I promised. 

But for the most part these are a bunch of things that my 11 year old severely autistic, non verbal son doesn't do now. 

And if he hasn't grasped by age 11 maybe that is a blessing in disguise...

So here goes...

I Will Never Try To Teach My Autistic Son ...

1) How to Unlock Doors
My son doesn't currently have the fine motor skills to unlock a door and he's never shown any interest anyway.  Yes he is working of fine motor skills all the time.  But unlocking doors?  Why should I teach him that?  Way too many autistic kids are bolters & run away at the first chance they get. And many are Houdini's who can break out even with multiple locks in play. Now my kid is not a bolter...yet. So why introduce the idea of unlocking doors to him... yet...  I know what you're thinking. What if there's an emergency. Well we are always with him. We'll unlock the door. 

2)  How to Get Into Our Basement 
Because he can't unlock doors Kyle has never once set foot in our basement. And that's a good thing because it's not really a basement it's more like a cellar with way too many dangerous things down there. Yes our washer & dryer are down there and it would be nice to teach him to help with that someday. Maybe that someday will be when I find the money to turn it into a sensory gym for him (or a man cave for me)...  But for right now there's a magic door across from the downstairs bathroom that he's never been behind.

3) That His Mom & Dad Aren't Cool
At the age of 11 is when most kids start rolling their eyes at their nerdy parents, right?.  But I think Kyle still thinks
his mom & dad are cool.  And I think we are still cool because he is somehow keeping us young.  I've said before & I'll say again that for better or worse we've been kinda living like the movie "Groundhog Day" and raising a toddler for 9 years now.  And when he was actually a toddler we were in our early thirties and we were cool.  And that is where we are gonna stay.  If he is gonna stay a toddler then we are gonna stay in our early 30s.  And we're gonna eat dinner on the couch in front of the tv, and go out as often as possible, and try to live life to the fullest!

4) How to Cut With a Knife
Yeah we're working on fine motor skills and we're working on using a fork appropriately but he hasn't come close to graduating to a knife yet... And I'm not rushing it.  :)  He can do enough damage with a fork. During his aggressive days, his summer of rage in 2011 he did this to me with a fork.

 He's currently not very aggressive but we know that it could return at any time so why give him a sharper weapon?  LOL :)

5)  What Santa Claus or the Easter Bunny Are
Ok, so he may be too old for it now anyway.  But he never really got it.  And in the early days that made wifey and me sad.  But if he never really got it, what are you gonna do?  If he never really got it, then that probably means he's never gonna care about materialistic things.  And I've written before that he's still thrilled to get the same 5-10 toddler books over and over and over.  And he can take joy in playing with a toy in the packaging for months... and then when the toy is out of the packaging he is thrilled and treats it as if it's a new toy!  :-)

6) How to Make the Volume Louder on the iPad
Ok so maybe I'm kinda kidding about this one. We are THRILLED that even with his limited fine motor skills Kyle has had success navigating the iPad and opening up apps that he wants and choosing videos he wants, but he currently doesn't know how (or doesn't care how?) to make the iPad volume higher (or lower, but that never really comes into play now does it). I've showed him quite a few times, but for now he's content to hand it to me and mand for me to make it louder. And if I say no for whatever reason he's somewhat ok with it.  So for now I'm gonna leave it be. 

7) How to Work the TV Remote
As with the iPad, the same is true for the tv remote. The buttons on these remotes are smaller & smaller and he doesn't have the fine motor to navigate it properly nor has he shown any interest.

In fact I think only recently has he made the connection that the remote controls the tv. So every once in a while when the tv is off or when we are watching one of our shows he will hand one of us the remote which is a huge step for him and something we are proud of. But his shows are almost always on, so I'm not sure I want him that adept at working the remote control anyway, especially when the Yankees are on...

8) What Nickelodeon and the Disney Channel Are
We are a simple family.  We are a Sesame Street, Dora, Jake's Big Music Show, Laurie Berkner family.  We've had a DVR from before Kyle was born.  We DVR all of his shows.  So he doesn't know any of that other Nickelodeon or Disney Channel crap.  And for that I am glad.  I know way too many typical kids Kyle's age who are addicted to the Disney tween programming.  I will not let that happen to my son!  If he ever moves away from toddler programming I will graduate him directly to adult programming, starting with the classics like Seinfeld & 30 Rock!  :-)

9) That He Can Easily Climb Over These Baby Gates

We still have a safety gate / baby gate at the top & bottom of our stair case and we have one on the door frame going into our home office.  And no, Kyle doesn't yet have the fine motor skill to open either of these gates... but he is now way tall enough that he could easily climb over them.  He's climbed over the home office gate a few times if he saw a toy or something he really wanted, but thankfully never the staircase gates.  He some how still respects the gates and I don't see any reason ever to clue him in to the fact that he's tall enough to climb over.  The day he figures that out I will be extremely proud & extremely scared... :-)

10) How To Lie
You knew I had to add this one didn't you...  :-)

UPDATED 10/23/14


Soon after this blog post came out, wifey helped me think of an 11th thing!

11) How To Dive Into the Pool
Many of you know that Kyle is a great swimmer.  Or better yet, a great treader.  He can tread water for hours.  Anyway, a couple of years ago one of his swim instructors tried to teach him to dive into the pool, but it wasn't going very well and they put it aside for awhile... But now we are at a point where we don't want him to learn how to dive because we are not sure that he'll be able to differentiate between deep water and shallow water.  And if he dives head first into shallow water... well that wouldn't be good at all.  So, for now, I'm probably for ever, diving is off the table.  The Special Olympics allows jumping in, right?


-- 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 21, 2014

10 Small Moments of Progress During a Rough Autism Day...

This post is about our day yesterday.  And how it was a rough Saturday on Autism Avenue, but when I really look back on it I noticed 10 small moments that really showed great progress in my autistic son.  I just had to open up my eyes to see them...

Ok so maybe it really wasn't that rough a Saturday. Maybe my son wasn't all that bad... maybe it was all about how I was reacting to things...  That's what my wife said... but that's not what this post is about..

In my mind it was a rough Saturday and somewhat of a throwback to some of the real rough Saturdays when Kyle was younger.

But within some of the rough stuff I was able to step back and appreciate that while some things are the same lots of things are different...and for the most part different for the better.

Ok so here's how the day went down.

So we had a birthday party for an ASD friend set for 4pm, but had no plans scheduled before then which is always bad news for all of us.

The king took a late -morning nap at around 11am which is his pattern these days...even at school...and even though he gets plenty of sleep at night.

Are these naps the results of mini-seizures, side effects of meds, or just growing pains of an early puberty tween? We have no creaking clue and that's not what this post is about anyway.

So, he falls asleep at 11am. Wifey rattles off a few tasks we can accomplish while he's asleep. I want no part of any of that. So instead I go out for a 9 mile run at around noon.

I get back 100 minutes later. (Yes I am that slow) and the king is awake and wifey is working on a gift basket for a baby shower she's going to today. Wifey takes pride in making a great basket..laying everything out perfectly...and then wrapping with cellophane... It's an old school art project for her.

So she's working on that and the king is breathing heavy and holding his breath like a mad man and is starting to get really antsy. He's stomping around the living room, playing with the lamp, getting into everything, etc. He's not used to still being home at 1:45pm on a Saturday.....and wifey is losing her patience.

I come out of the shower and I hear wifey yelling at Kyle a little. "just give me a chance...let me finish this..."

And there's Small Moment of Progress #1. The breath holding, the breathing heavy, the antsyness, the getting into everything... All that's been going on for years... But part of the reason he was frustrated was that he was bringing her books to read and she wasn't reading them fast enough or wasn't reading them the way he wanted.

Wifey said "he keeps bringing me books, or taking my hand and leading me to his playroom. And then I read him the book or go play in his nook and he immediately leaves the room. I don't know what he wants...and I want to get this basket done."

Totally frustrating for him and for her. But what's huge...what's progress from

Monday, September 15, 2014

4 Reasons Why New Autism Parents Should NOT Read My Blog & FB Page

(originally written & published on September 15, 2014)

I've been meaning to write a blog post like this for a long time. 

And wifey's been wanting me to write a post like this for a long time. 

And as my Facebook page gets closer and closer to 100,000 likes I figure now is a good time. 

Here's the deal. 

Not a day goes by where I don't get an email or a message from one of y'all saying something like  "my kid just got diagnosed with autism yesterday and I just found & started reading your blog today."

And when I read stuff like that I cringe on the inside. 

Why, you ask?

Because when my kid was first diagnosed I would not want to have read a blog like mine.

Why, you ask again?

Well there's 4 reasons why...

4 Reasons Why New Autism Parents Should NOT Read My Blog /FB Page

REASON #1) You're Reading The Story of a Really Low Functioning Autistic Kid 

In many ways my kid is kinda like a worst-case scenario situation. First diagnosed, of course, with PDD-NOS before he was two years old.  Then he made some nice progress only to have a late, huge, slow, RARE, unexplained regression to become a severely autistic nonverbal kid with classic autism.  

Why would you new autism parents want to scare yourself shitless by reading my son's scary story?  His story is a rare occurrence and I have no answers as to what caused his late slow huge regression so I've got no wisdom to impart.  

When your kid is first diagnosed you should read and seek out those hopeful stories. Miracles CAN happen. Kids do go from being "severe" at age 3 to mainstreamed by age 7. 

I didn't say cured. I said

There was 1 girl who was in Kyle's class when he was ages 3-4. This was an all severe, all autism classroom. This was an intense ABA school. This girl was severely affected.  She was in school with my Kyle for that 1 year, and then they went off to different schools.

But fast forward 7 years and we run into her and her folks a few times a year at the pool and she is very high functioning & in a typical classroom (and she looks at Kyle with that "what is wrong with that boy?" look)


My point being low functioning, non verbal kids sometimes do grow into being high functioning verbal kids.  Those stories are out there!  But, unfortunately, my blog doesn't tell a story like that.  My son's story is not one of those stories.  My son's story is a worse case scenario story.

So, again, why would you, a new autism parent, want to read about that?

REASON #2) My Severely Autistic Son Now Also Has Severe Epilepsy 

Talk about a worst-case scenario!  Two years ago, at the age of nine, my non-verbal, severely autistic, worse case scenario kid started having seizures... and now he's got full blown epilepsy. And a hard to control/treat form of epilepsy that's resistant to medication. 

So you can easily google it and find out that about a third of kids with autism develop epilepsy.

Those facts are out there...

So why would you, a new ASD parent, probably overwhelmed by the recent diagnosis of autism, want to read my blog/FB page and hear daily about my son's seizures & epilepsy?  Why put yourself through that?  Isn't autism enough to freak out about right now?  I think so.

Besides, when it comes to the epilepsy, I got no prevention stories for you.  I got no old blog posts that say do THIS and there's less of a chance that your autistic kid gets epilepsy.  ("oh if only we had done that").   I got no epilepsy prevention tips or tricks for you.   There's literally nothing you can do to prevent it.  So new autism parents, why worry about it now?  Why read about it now?  Focus on autism.  

REASON #3:  We've Got No Autism Success Stories to Share With You 

You're reading the story of 2 parents who had our son try many of the different flavors of treatments and medications and therapy's out there for autism.  And he had little or no success or improvements with any of them. 

I've written about this quite a bit. We did the GFCF diet. He did intense ABA. We gave him vitamin B12 injections. We rented a hyperbaric oxygen chamber (HBOT) for a month. And lots of other things along the way. And none of it worked. None of it made him less autistic. Or less severe. Or helped his speech. Or calmed his behaviors.  

In fact during the time that we did some of this stuff (GFCF & B12 injections) was around the time that he slowly got worse... He became more severe. 

Do I blame any of the therapies?  

Do I regret trying any of them. 
Not really. (Ok maybe the HBOT cuz it was a HUGE waste of money. 

Do I think some of these therapies and treatments help other kids with autism. 

But not with my kid. 

So you're not going to read happy success stories about the GFCF diet or ABA therapy by reading this blog. 

And when my kid was first diagnosed I wouldn't have wanted to read a blog post about all the things that didn't work. I would want to have some hope. 

And trying some of those things are truly a right of passage for autism parents in the year 2014. 

I wouldn't want a new autism parent to not try the GFCF diet due to reading my blog. You need that hope as a new autism parent.  So don't read my blog with no success stories!

REASON #4)   My Blog Is More About Me Than My Son With Autism. 

It's all about me. 

Somebody wrote a comment to this effect just yesterday. 

Now I'll say that this blog isn't all about me but yes it is a lot about me. 

And while I do talk about my son and his ups and downs extensively, the blog is a lot about how I deal with the double whammy of my son's autism and epilepsy.  

And if you read the page/blog long enough you'll see that even though I've been living this autism lifestyle for 9 years and the epilepsy lifestyle for 2+ years I still have a hard time with things depending on the day. 

I accepted my kid's diagnoses very early on. I love him with every fiber of my being. 

And it does get a little easier as the years go by...but you know what...I can honestly say that it's not that much easier, at least for me. 

I wrote a few years ago that not a day goes by that i don't see a typical father & son interacting and it hurts. 

And that's still true. It doesn't hurt as much as it did a few years back (thanks Wellbutrin!) but yes it still hurts. 

I'm not sure I would've wanted to know all that when my kid was first diagnosed. So why would I read a blog about a depressed father who is always talking about himself & complaining about the hand he's been dealt?


So there you go. 4 Reasons why new autism parents shouldn't read my blog 

And I'm being somewhat sarcastic / humorous with this post but I'm fairly serious. When I was a new Autism parent I truly would not have wanted to read a blog like this. 

But you know when I did need a blog like mine?  I needed a blog like this in 2011 when my son was 8 years old and in spite of all the work he put in and we put in over the 6+ years on the autism roller coaster he was still severe, still non verbal, still not potty trained and he was filled with rage. 

And I was tired of 6 years of trying autism parent support groups and finding nobody with the same issues as us, nobody with a kid as low functioning as my son.  Their problems with their autistic kids seemed trivial to me. "Echolalia?  Repeating Dora lines all day? at least her kid can talk". I'm not proud of this but thinking back that is the way I felt. 

And Facebook wasn't helping with all your old HS friends with typical kids posting beautiful family pics of their vacations & holiday dinners. 

So back in 2011 I tried to find an online autism support group or blog or Facebook page that told anything close to our situation with our son. 

I tried to find a place online where people talked about everything associated with severe autism, the good, the bad, and the poop/pee. 

And all I could find were those happy blogs/pages telling success stories (that I recommend you autism parents read now). 

Nowhere were people telling a story like my sons story or my story.

It was all sunshine & rainbows and "god wouldn't give you more than you can handle" and "my 7 year old autistic kid just smeared poop on the wall, but I wouldn't change him for the world"

Now again when I was a new autism parent I needed and sought out the sunshine & rainbows stuff (but not the god stuff or the change him for the world stuff)


But after 6+ years of living in the autism trenches I had enough and wanted to hear more about kids like my son and moms & dads like me. 

I couldn't find any so I started this Autism Daddy page & blog and hit the ground running posting daily about the craziness that was (is) our lives.  

And slowly but surely hundreds, then thousands of moms & dads just like the wife and me came out of the shadows and told the funny, dirty underground stories about their severely autistic kids and we had our own little crazy stimmy quirky community.

And now that quirky little community is gonna hit 100,000 likes in the week or so! 

So I'll end it right back where I started it…

New autism parents please don't read my blog. And I hope you never have to read my blog. 

I hope your kid has a huge improvement with ABA or the GFCF diet  and you never find yourself wanting to read a blog like mine. 

However, if after a few years on the A Train, your ASD kid is having a rough time and you've been down in the dumps and tired of reading about all the kids who showed miraculous progress with _____ while your kid didn't. 

If that's you after a couple of years on autism avenue then that's when I invite you to pull up a bar stool and join the autism daddy community and jump in and read this blog from cover to cover and join my FB page and laugh and bitch and complain with other parents about our kids crazy stims and bizarre sleep habits and share stories about our kids pee and poop. 

Until then new autism parents, after reading this post, stay away from this blog... And I hope for your sake and your kids sake that you never have to come back

That's it. The end!

Love you all!  

Autism Daddy Over & Out!


-- 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!!

Saturday, September 13, 2014

Ipad Survival/Sanity Tricks for Autism Parents: You Can Lock The Screen!!

(originally written & published on September 13, 2014)

This is my most important blog post of all time!

We all know that our autistic kids love their iPads!  My son loves his, but sometimes all he wants to do is open & close apps for an hour or so, and all I want him to do is play with one app or watch one video for an hour.

I know many of you autism parents know what I'm talking about.  And hearing the same 15 second clip over & over can drive any person batty.

Well ol' Autism Daddy is here to change your freaking life!

Did you know that you can disable the home button on your iPad, thereby forcing the kid to stay within the same app?

So your kid is forced to stay in the same game until you decide!

And you can also lock the touch functionality of the screen.

Ok, so you put on a Sesame video on the iPad.  You've already disabled the home button so they can't leave the video to enter any other apps… but now he keeps rewinding the same scene over and over.  Or going into the chapter page and he keeps playing the credit sequence over & over.  WTF?!  :-)

You can also disable the touch functionally of the iPad screen so, now they can't rewind or mess with the video.

Ok, so what about those game apps which are great, but have a parents button in the upper left corner that my kid keeps pressing which takes him out of the game experience.  You can also just disable the touch functionally of certain sections of the screen.

I explain how to do it all in this short video tutorial that I just made.

I know what some of you are thinking.

"My kid will just keep triple clicking the home button and trying passwords over & over.

Well the one thing I didn't mention is that the first time you put in the wrong password it says incorrect password try again in 10 seconds"  The second time?  "try again in 60 seconds"  The 3rd time and every time after?… "3 minutes"

That'll deter those little buggers!  :-)

If you need more of a hands on step by step guide on how to do it with pics and a great animated pointing finger  :-)

there a great Wikihow about this called How to Use Guided Access to Disable Parts of an iPad Screen

Ok, but tell me the truth... did I just change your life!  Did I rock your world!  You are welcome!

Please share with other autism parents or any parents who need to get their sanity back…  And I accept tips…


-- 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!!

Monday, September 8, 2014

A Perfect Example of the Yin & Yang of Our Autism & Epilepsy Lives

This should be a quick one I promise.

Wifey signed Kyle up for some speech therapy offered at a local college.  

12 sessions after school, 1 per week, 1 hour long, at a good price because they are students studying to be speech pathologists. 

Today, after school was his first session.

Wifey and I had the following text exchange at about 3pm.

So all afternoon I was riding high.  This was awesome stuff!  

And I couldn't wait to hear the rest of the stories when I got home.  

I texted wifey at 5:55pm to say I'll be leaving in a few and I get no response. 

I texted her again at 6:05 to say that I'm walking to my car should be home at 645.  

No response. 

When I get home I find the king asleep on the couch 

with wifey sitting right next to him. 

HER: "He had a seizure."

ME:  "Damn!  A big one?"

HER: "I don't know. He was in his playroom and I could hear that weird humming sound that he sometimes makes. By the time I got to him it was over. And he fell asleep a few minutes later. 

ME:  "Any naps or seizures at school today?"

HER:  "A 20 minute nap. Then he got up but he has small seizure and had another hour nap."

ME:  "Damnit!"

HER:  "They said when he was awake he had a fine day."

ME:  "How do we break this pattern?

How was the rest of the speech therapy?"

HER:  "Fine. But by the end of the hour he was DONE. But he only tried to hit her once..."

That's pretty much it. That's the Yin and Yang of our day today. 

By the way the positives from that speech session today are pretty HUGE!  That's not lost on me here. It just sucks that you can't bask in the glow sometimes...


It seems like we can't have a couple positives without a couple of negatives. 

That's just the way the world works I guess. 

Or at least the way our world works...

I just need to accept it...

Yin & Yang baby, Yin & Yang!



Over  & Out. 

I told you it was a quick one. 

Tuesday, September 2, 2014

A Report On Kyle's 1st Day of School.

 First day of school for Kyle is in the books.  This is the equivalent of 6th grade for him I guess. :)

I went with wifey to drop him off this morning. 

Today's school day consisted of a small seizure in the car on the drive to school.  And then in the classroom as we were overwhelming the teacher & staff :) with info on his seizures and how to use the VNS magnet, almost on cue, he had 3 small seizures within the first 10 minutes he was there.


When I texted wifey after school to see how the rest of his school day went she said he had a 90 minute nap at school  (because of the seizures) but he was smiling when she picked him up. 

That's pretty much how an average day during the summer school went but it sucks when it happens on day one. 

I got home from work about 6:15pm and of course he had plenty of energy and was climbing all over the couch when I got home. 

I said to him...
"Dude why don't you have all that energy during the school day and show them your true self and then take a 90 minute nap when you get home from school and give mommy a break?"

I'm not sure he understood me. 


The other new thing we have to stress about lately is that the king's appetite has been crappy the last few weeks coinciding with a new med and a med tweak / change. 

He ate none of his lunch at school today. 

We've had lots of feeding issues over the years with Kyle. Lots of weight loss and force feeding were in our past. 

We haven't seen his appetite this low in a few years... since before he went on the med depakote for his seizures. 

Depakote has weight gain as a side effect which in the king's case we welcomed with open arms. 

But now his appetite is back down to pre depakote levels. 

Anyway I just force fed him his dinner. 

And that process back lots of bad memories. 

Again it's only been bad for a week or so. Hopefully it's just a temporary phase and his appetite will be back very soon. 

Otherwise we are probably only a few weeks away from wifey spoon feeding him butter to get the pounds back on. 


I'm only half kidding. 

So not the greatest first day of school to report unfortunately. 

But what can we do?

It is what it is. 

And behaviorally he seemed fine and happy when he wasn't napping. 

And as wifey said on the drive home from dropping off this morning...

"Let's not freak our yet. It's only day 1 of 180"


That's it. The end. 

Monday, September 1, 2014

Video Blog Post About Our Boring Labor Day

I decided to try something new tonight. Wife he had the chance to go out tonight with a couple girlfriends and see a band.

We haven't had a sitter for a while so I figured one of us should at least get out. 

And while she was out I decided to videotape what was going on with me and the king around the house while telling you about our labor day activities. 

Our labor day activities consisted mainly of lying around the house... wifey doing laundry... me cleaning our office and getting the king ready for his first day of school tomorrow...

But why am I writing about it when I can show you...

 so without further do...

Please watch 



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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