Friday, November 30, 2012

An email to Kyle's psychopharmacologist about his aggression...

The email below is an email that the wife sent today to Kyle's psychopharmacologist.  This is the doctor who saved Kyle from the 2011 "Summer of Rage" when she prescribed klonopin & thorazine.

He came off the Thorazine a few months back cuz it can bring on seizures in kids who are prone to getting seizures.

Some of the rage has returned, at school it's getting pretty bad.  So the wife figured we should check in with her...  Here goes...


Dear Dr. M,

Kyle's behavior, mostly at school, has been very aggressive for a couple of months. In addition to being aggressive with the adults he has now moved on to the kids. Hitting, kicking etc. Mostly the aggression is just random, not aimed at anyone in particular. His teacher feels it's something internal. We are trying to deal with this as a behavior issue & not be so quick to increase his meds, but I just wanted to introduce the subject to you.

Should we increase his Klonopin? Go back to the Thorazine? Something else?

Many things can account for Kyle's aggressive behavior. As you may know, he was hospitalized in early October because his seizures dramatically increased. While there he had a 24 hour EEG & then changed his meds. He has now built up to 750mg of Depacote 2X a day to control his seizures. (In addition to the .5mg of Klonopin he gets 2X a day). The good news is over the past couple of weeks we have not seen any seizure activity. Also, his appetite has increased & he has gained over 2 pounds! The downside is that he is easily agitated & has bouts of aggression throughout the day.

Other things that could account for his behavior is that beginning in September he has a new one to one aide at school, there are now 10 kids in his class when there should be 8...he had hernia surgery on Sept. 19th - missed some school, about 2 weeks later he was back in the hospital for seizures & missed more school, hurricane Sandy = out of school for over a week & without power for a few days...& he missed a couple of days of school this week due to a respiratory infection (for this he is taking 20mg of Prednisone, for 5 days & a round of Azithromycin. (& pretty soon it will be Christmas vacation - so his schedule has not been consistent for months).

Through this we are still working with a behavior therapist for Kyle's breath holding & now for his other problem behaviors.

So there you go...just wanted to get your opinion...should we wait for Kyle to settle into his new normal?...or do we help him along with some meds?

Hope this note finds you well & as always thank you for your help!

Best regards,

Autism Mommy


So we will see what she has to say...

That's it. That's all she wrote. Another slice of our life...Over and out...

Tuesday, November 27, 2012

The wife took the king to the doctor today...

The wife took the king to the doctor today... Before you read any further.... Everything is fine. This is not a serious blog post. It's more a "day in the life" blog post.

Anyway, he's had a cough for almost 3 weeks. It wasn't bothering him and he had no other symptoms so we left it alone.

We have a history of going to see Kyle's pediatrician too early into an illness before it's really shown up yet. Or we go and it's nothing and we wasted a $25 copay. His pediatrician always says "Use your gut.  How's he looking? How's he acting?"

And he's looking & acting fine. Fine for Kyle. :-) And he's had enough Drs the past few months with the hernia and the seizures. So we left it alone.

Then yesterday he just looked kinda sick. The cough didn't sound any worse...but his lips were all chapped, and he looked a little glassy eyed. So the wife pulled him out of school for a 10am dr appointment.

At 10:47am I texted her to get the report.  And we traded texts back & forth throughout the afternoon...

Here is our exchange.

That's it.  I got home by 5pm.  And he seemed fine.  A bit more hyper than usual, and an old stim seems to be back....playing with saliva...but I'm gonna chalk that up to being sick & being extra "juicy"...and pray that when this infection is over, the saliva play will disappear too...

Kind of a strange blog post, but people seem to really like these kinda "slice of life" posts and y'all seem to like our text exchanges so I thought I'd give you a bunch...

Over and out...

Thursday, November 22, 2012

A Raging Thanksgiving... :-(

It's been a rough Thanksgiving Day for the king....and therefore for me...

We've been slowly increasing his dose of depakote (anti seizure med) over the past few weeks and last night was his first night at a new higher dose and today we had a flashback to the "summer of rage" Kyle.

Multiple meltdowns/ tantrums. Maybe they were hunger related, or bowel movement related, or maybe tired related, or maybe he just felt like throwing things and hitting me all day.

But boy this kid knows how to push my buttons! When he is in a "rage" I can see him looking around for something to throw or hit and he always seems to go for the most expensive or the most fragile things.

DustBuster, books, toys, hitting the tv, trying to overturn the tv in his room, and then just attacking yours truly. I got the brunt of it today. And this was all before we left for my in-laws for Thanksgiving dinner.

And I didn't react well at all.

I was just really angry. When I got hit I yelled. And yes I even

Wednesday, November 21, 2012

Strategies for an Autism Thanksgiving and the weird trade-offs we have to make...


So tomorrow is Thanksgiving and the wife and I are both a little apprehensive. Why? Because the holiday is at my in-laws and Kyle gets a little crazy there lately (ok let's say a lot crazy there lately).

Now before y'all say why don't they move the holiday somewhere else? Let me say that our families are both great and extremely accommodating. And we've moved most holidays into more Kyle-friendly environments (like our house or my sister in laws house). But my in laws want to keep Thanksgiving at their house. And that is totally fine. We have to be flexible once in awhile too. :-)

So, of course we are going. But we are nervous. The main reason we are nervous? Well here's how I put it in a previous blog post but it's even more true now...

"He attacks the elderly.  :-)  He cannot be around my in-laws without trying to bite my father in-laws forehead or pulling my mother-in-laws hair.  He also likes to rip off jewelry & glasses off your head.  But mostly with his grandparents.  My wife likes to say that "he loves the crap out of them"

But lately it has gotten worse especially with

Tuesday, November 20, 2012

A Bizarre Tuesday: Coughing and Limping... and Laughing?

Tues 8:44pm -- The end of a bizarre day.

I took the day off from work to hang with the wife while Kyle was in school. That was kinda nice. :-)

But in Kyle news... Kyle's had a lingering bad cough for about a week now. No other symptoms, just a cough.

Then this morning, from out of nowhere. He started limping pretty badly with his right leg, heavily favoring his left leg.

He went thru a stretch a few years back when he went thru phases where he'd have an unexplained limp. It would last a few weeks/months. We'd run around getting X-rays and visiting Drs with no answers and then it would just go away on its own and return 6 months later. I mentioned the limp on the AD FB page last year and a bunch of people said it could be growing pains.

So today I was chalking it up to growing pains and hoping that's all it was and we wouldn't be spending Black Friday at the Drs office.

So about 7:30pm today it was just a bizarrely comical scene at the ol' AD household.

There's my son coughing a lot while

Wednesday, November 14, 2012

Another Perfect Example Of Why We Call My Son "King Sh-t" :-)

So as many of you know I call my son Kyle, the King.

That's short for "King Shit"

I've written a few other blog posts with examples of why the name King Shit is fitting for him. Well tonight we came across another reason.

It was a Wednesday night a little after 8pm. Kyle was flopping around on the couch starting to settle down for the night.

I was about to bring him upstairs to start the bedtime routine, but the wife said that his feet were dry and she wanted to massage his feet & hands with lotion. The king usually loves to have his feet massaged...

So she gets the lotion and says to him "Lotion..." in a sing songy way... And the King sticks out his foot like "Massage my feet..." :-).

Kyle's in a new habit of clapping his hands together 2 times, quickly & forcefully to get your attention. Almost the way a king would summon one of his servants...

So after several minutes of massaging his feet the King claps his hands two times and hands the wife his hands, as if to say "Now massage my hands"

Then while she's rubbing his hands the wife is having a conversation with me about something...something unKyle related... and his majesty was trying to settle down but her talking must've been annoying him so he clapped his hands 2 times as if to say "Silence Woman!" and then rolled up into a ball and burrowed his face in the couch as if he was going to sleep.

Boy is that kid a spoiled King Shit or what?


Friday, November 9, 2012

This Is What I Mean By Severe Autism...

(originally written & published on November 19, 2012)

I write on my page a lot that my son Kyle has severe / classic / non-verbal autism... and that he has the receptive & expressive language of an 18 month old and he's been at that 18 month level for years.  

And almost every day someone will respond to something that I write about Kyle by saying something like "my son sounds exactly like Kyle" and I read that and I think...  "I've never met anyone like my Kyle"

I swear Kyle has his own form of autism.  So I thought I'd relay a few quick stories to show you how "severe" he is.

Very often when I write that Kyle's autism is "severe" people assume it's because of his behaviors.  

"He must be a real stimmy kid, or self abusive, or violent.  That's what he means by severe."
Nope.  Kyle's exhibited varying degrees of all of that over the years, but that's not what I mean by severe.

Here's what I mean by severe.

Tuesday night about 7pm, Kyle's standing in the living room.  Me & the wife are sitting on the couch.  Out of the blue I say to him 

"Kyle, turn off the dining room light please"

He immediately recognizes that I'm asking demands of him and starts breathing heavy and getting stressed out, probably thinking "what does he want?"

He then picks up a ball that was at his feet and starts bringing it to me.

"Thanks, but no buddy, not 'pick up' but 'turn off light'"

He grabs a water bottle off the table and takes a drink.

"Good trying buddy, but 'turn off'" ("turn off" said in that annoying ABA sing songy way :-)

And the wife says "show him"

So I take him close to the light switch and say "turn off light" and of course he does.

And it made me realize that even some of the stuff we think he understands he really doesn't.  If he's standing near the light switch and I say something he's probably assuming I'm saying "turn off light"

If he's standing in the bathroom in front of the sink and I say something that sounds like a "mand" he's probably assuming I'm saying "wash hands"

But if I put him in the middle of the living room and said "wash hands" or "turn off light" he's got no clue what I'm asking him and he gets stressed out with the fact that I'm making demands on him and will look for the object closest to him. 

He's 9 1/2 years old.  This is what I mean by severe autism.

Here's another quick example...

The other day he was getting out of the car.  And he stopped and tried to slam the car door shut on his own.   He's never really done that before.  And the wife was like "good job, what a big boy closing the door and helping mommy."

He's 9 1/2 years old.  This is what I mean by severe autism.

Kyle doesn't walk anywhere or do anything with a sense of purpose.  He just wanders / meanders through life.  Most of the time he's happily wandering / meandering... but still.  For example, every Saturday Kyle goes to a special needs sports class which is held in a school gym.  It's basically attempting to teach these kids how to wait in line, run to a cone and come back, dribble a ball, attempt to shoot a ball.  There's all different functioning levels in the class....but my son is the only one who has to have his hand held literally the entire 45 minutes, and be led through each activity.  Listening / following directions / grasping what is going on around him is just not in the cards for him right now...

He's 9 1/2 years old.  This is what I mean by severe autism.

There's tons more that I could write, but a lot of the others you could say are truly our fault as parents for not pushing him more.  His getting dressed skills are  poor, his eating skills (using utensils, etc) are poor.  He is potty trained (thank god!) but we still need to wipe him and lead him through the "flush, wash hands, etc, etc" every time.

He's 9 1/2 years old.  This is what I mean by severe autism.

That's all for now.  And no, there was nothing serious or depressing going on this week that made me decide to write this today... but the "turn off light" thing has stuck with me for a few days...

So after reading all of this can any of you truly still say "my son is exactly like Kyle"?



PS-- Hey guys, by the way, I didn't mean to sound like I take offense or are bothered when people say their kids are exactly like Kyle. It helps bond us together... I get it...

And it's only when he has a "severe moment" that I begin to question if there's anyone out there like my Kyle...and based on your comments the answer is yes.

But I took no offense at all...sometimes I think my off the cuff, in your face writing style gets me into trouble and makes me sound angry or annoyed... LOL.


  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!!


Friday, November 2, 2012


As many of you know, I'm running this year's NYC Marathon in honor of my dad who passed from Parkinson's Disease back in July of this year. And to earn my slot in the race I committed to raising $3000 for the Michael J Fox Foundation for Parkinson's Research. I hit my $3k goal about a week ago and all was right with the world...

Until Hurricane Sandy struck...

And the devastation that struck the NYC Metro area is astounding. And Staten Island where the NYC Marathon starts was hit particularly hard. And I waited & expected for this year's NYC Marathon to be cancelled. And as a life long NYer I would have supported that decision...but instead Mayor Bloomberg INSISTED that the NYC Marathon go on as planned.

I think this is the WRONG decision and I seriously weighed not running the race for the past 2 days.

I saw residents of Staten Island on the news yesterday pleading for help. They are still without power. They have toxic water in their homes. They are still puling bodies from their homes and the death toll is rising. And to know that, and to think that we are going to ship 45,000 runners to SI for a marathon seems wrong to me.

I feel that the NYRRC & the mayor should have definitely cancelled the race.

But they didn't, and the race is going on. And it's going on with or without me. And I trained for this race. And I raised over $3000 in my dad's honor. And I know that the charity gets the money regardless if I run or not, but there's something about running a marathon for a good cause with a charity's shirt on my back, that's pulling me towards running this Sunday.

So, yes I'm leaning towards running the marathon this Sunday...

So in a last minute effort to make me feel less guilty about running the NYC Marathon and to support an EXTREMELY worthy cause I'd like to push all of you to donate to a great organization called AMERICARES.

I'd love to raise $1000 for AMERICARES towards Hurricane Sandy Relief Efforts...

Please support AMERICARES and donate as much as you can. No amount is too big or too small!

What does AmeriCares do? What are they all about? I'm glad you asked...

Below is more info on AmeriCares and how the funds will be used...


AmeriCares emergency response experts are closely monitoring Hurricane Sandy and are delivering medicines, first aid kits, cleaning products, flashlights and other relief supplies to the hardest hit communities up and down the East Coast.

AmeriCares relief workers have reached out to more than 100 health clinics, food banks and other agencies with offers of assistance. The global health and disaster relief organization also has aid workers ready to be deployed at a moment’s notice.

Please click on the link below to support their relief efforts.

Thanks so much.


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