Monday, October 20, 2014

What Mon at 11pm Looks Like When Kyle Wakes Up

For the past week melatonin hasn't been working it's magic around here. Kyle's been getting up at around 11 PM each night. 

Some nights we will stay in his room and he'll fall back to sleep in 30 minutes or so...

But tonight feels like one of those nights I think we're going to be up a LONG time

I'm taking the first shift and I'll put wifey on duty at about 1 o'clock. 

And in this video you can really get a sense of what these nights are like. 

He seems pretty happy and related...but you can see and hear the breath holding that I'm always talking about.


And I hope you can appreciate how excruciating this is to hear and see every day



Goodnight all…  Pray to the sleep gods on my behalf



:-)






Sunday, October 19, 2014

Why I Sometimes Prefer To Be Out All Day w/ My Autistic Son

It's 4:01pm on Sunday. Wifey has plans this evening. She just left. She probably won't be home til after 9. 

So the king & I are home alone. He's holding his breath like crazy which sounds like fingernails on a blackboard to me. 

And I'm staring at 5 hours til he goes to sleep with nothing on the agenda. 

And that scares the sh-t out of me.  

He's fine being at home it seems.  He might even prefer it. But there will inevitably be a few rough moments. 

So, I'm almost tempted to take the king to the supermarket right now. We don't need anything (except bacon)  :)

But I just need to shake up the day a little & break things up a bit. 

Lately I am so much better when we have plans all day long...even on the extremely rough days with his majesty.  

I thought of this a few weeks back when we drove out to the NJ shore on a Sunday afternoon. 

It took us an hour and a half to get there and over 2 hours to get home and all told we were probably on the beach for less than 4 hours. 

On paper that makes no sense. And years back I would resist these things cuz I was scared of a Kyle meltdown. 

But recently I've learned that 12 rough hours at home is worse than 12 rough hours out of the house.  At least for me. 

I know what you're thinking.  It's all about you again... And... Maybe he wouldn't be as rough at home vs on the beach. 

Maybe you're right. But wifey and I like the beach. And we don't ever want to become prisoners in our own home because the king would rather stay home. 

I've written before how we make it a point to bring Kyle everywhere sometimes whether he likes it or not. 

And we are gonna continue to do that for as long as he and/ or society will allow. 

But getting back to that beach outing...

Kyle usually likes the beach a lot. 

And even on his roughest/ worst days Kyle will always have a few shining / happy moments. 

So on a rough day going to the beach breaks things up a bit. I think in my brain (yes it's all about me) :) a rough car ride there, some rough moments on the beach, and a rough car ride back breaks the day into more manageable rough chunks rather than 12 rough hours straight at home. 

And during those easy going moments I need to pick my head up and realize I'm on the beach and staring at the glorious Atlantic Ocean. 

Any way I'm babbling. I hope this make sense and that some of you can relate. 

Anyway, time to break up this day. I gotta get his shoes on. The supermarket awaits. I'm waiting for wifey to text me a list. 

Oh wait, what's this?  He just brought me to the bathtub and indicated that he wants a bath...

"Good communicating buddy!"

Ok, first bath, then supermarket. 

:)

THE END

Wednesday, October 15, 2014

My Official Position on Special Diets & Marijuana for Autism & Epilepsy

People are always asking me on my Autism Daddy Facebook page & blog...

Why don't you  try the GFCF diet for Kyle's autism? 

Have you  considered the Ketogenic diet for Kyle's epilepsy?

And for a few years this story was making the rounds on social media


 and after seeing this people were always asking whether I would consider marijuana to treat Kyle's autism.


And more recently people are always sending me links to the Charlotte's Web story like this one from CNN.com

Monday, October 13, 2014

Broccoli for Autism? Things That Make You Go Hmmmm...

This story came out today…


Broccoli compound shows promise for treating autism







Normally I'd dismiss something like this as another crazy wacky autism study

...but what has me intrigued is this part of the article...

"…researchers chose to test sulforaphane as an autism therapy.
 
Why study a broccoli sprout extract? According to Singh, one reason is related to a phenomenon known as the

Sunday, October 12, 2014

What Me Blow Drying Kyle's Hair Sounds Like :)

This was me trying to blow dry the king's hair after a bath/shower at 6:30ish on a Sunday night. He was in a happily rambunctious mood as you can hear.


 

Saturday, October 4, 2014

What I Get Used To When I'm Not There To See It...

It's a rainy Saturday at 11:13am.  Wifey is at a yoga class.  And I'm watching the king take his mid-morning nap and I'm on the lookout for any big seizures.

As you all know Kyle has hard to control epilepsy on top of his severe autism.  He's going thru a great phase lately with his behaviors.  His autism is better, but his epilepsy has gotten worse.

Kyle had the VNS Surgery in August of 2013 and for the first 6-7 months it drastically reduced the amount of seizures he had, but then around March they started to creep back.

And now not a day goes by when he doesn't have a few small ones.  So he's on more anti seizure meds.  And those meds affect his appetite and make him sleepy.  Some of the seizures also make him sleepy.

So throughout his summer school and now throughout the first few weeks of regular school he's been in a pattern of us waking him up around 7:30am and then him taking a mid morning nap…whether the naps are seizure induced or because of the meds isn't always clear.

But it's just funny what you get used to and what you are ok with when you are not their to witness it.

Every day for the past few weeks I'd text the wife to check in and see how Kyle's school day was.  And every afternoon the report was pretty much the same…  

Basically the gist each school day was...

Friday, October 3, 2014

Why We Still Need "Awareness" Campaigns







Every April is Autism Awareness Month.  We all know that.

And every April the autism community gets overwhelmed with articles about autism.  And by about April 12th the autism community is usually screaming "enough with the awareness!  everybody should be aware by now"

But I don't agree with that.  I don't agree that everybody is aware.

And I explained why in my excellent Autism Awareness Day post from 2013 :) when I wrote:

For the people that say the outside world should be "aware" by now.  You're wrong.  You're living in your autism bubble.  
To you and to me, it seems that autism is in the news EVERY FREAKING DAY.  But that's because we are seeking out that news.  
Admit it, you have a google news alert set to feed you all the autism news of the day.
Or most of your friends on FB are also in the autism trenches so you're FB newsfeed is filled with autism stories EVERY day. 
Admit it you are obsessed with reading blogs written by autism moms & especially dads.  :-) 
So, to you, it seems like the world is drowning in autism awareness. But it's not true.  You're only reading about autism if you want to read about autism. 
If you're a typical parent, and you watch the evening news every night, check out CNN.com a few times a week, and read your local newspaper every day you're probably not that aware of autism. 
Think about the types of & the frequency of autism stories that hit those sources on a weekly basis. 
They are few and far between.  
And seeing maybe 5-6 stories like this a month doesn’t make you “autism aware” in my mind.  

And I repost all that today (a) because it is awesome writing :) and (b) because today I came face to face with the lack of awareness I was just writing about.

A lack of awareness, not about autism, but about Spina Bifida.

Earlier this week one of my old blog posts was

Thursday, October 2, 2014

Parents: Don't Be So Afraid of the Autism Diagnosis











(originally written & published on October 2, 2014)






Ok,  so I know I wrote in a post last month that new autism parents shouldn't read my blog, but this post is an exception.

The idea for this post came from me reading this great blog post from an autism mom called  "WE DIDN’T LISTEN… AND THAT HAS MADE ALL THE DIFFERENCE."

In it, the mom deservedly pats her & her husband on the back for knowing something wasn't right with their daughter at a very early age, and fighting to get her evaluated and sticking to her guns and not listening while every one was telling her.....


"She’ll be fine”, “What are you so worried about?”, “My friend’s kid didn’t talk till he was 4″, “She seems normal to me”, “You’re being paranoid”, “Don’t worry, just give her time”

And she got her daughter into therapy at 15 months, diagnosed on the spectrum at 21 months and 11 months in to the journey she wrote...

"Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about Early Intervention and how important it is. My only regret is that we didn’t know more and start prior to 12 months of age. 
If you KNOW in your gut that there is something different going on with your child – please listen to that voice. Don’t give up no matter what. It could very well mean all the difference for them and their future."

And she is absolutely correct.  Early intervention is vitally important and all the experts tell you the earlier the better...Which makes me wonder, why do friends, family, co-workers very often tell us "give him time, he'll be fine"?  

I know they are trying to make us feel better, but why not say

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