Saturday, December 28, 2013

2013 - PICTURES OF OUR AUTISM & EPILEPSY LIFE



You can also see & comment on all of these pics on Facebook at https://www.facebook.com/media/set/?set=a.766255533402249.1073741825.163509233676885&type=1&l=c6e10ba03c 


Autism & Christmas 2013 — Some Good Traditions & Some PainfulThoughts...



All month long I was planning on writing a positive post about autism & Christmas and the holidays and how the wife & I have finally figured it all out.

But then some painful/emotional stuff hit me like a ton of bricks on Christmas Day so I figured I should probably write about that too…

So this post is gonna be mostly good stuff and some painful downer stuff at the end… So hang on for the ride…

Thursday, November 28, 2013

5 Things I'm Thankful For On This Thanksgiving.

Thur 9:12pm -- Hope y'all had / are having a nice Thanksgiving!

As I sit here on the couch in the dark watching Sesame sleepy time videos with the king I'm thinking about all the things I'm thankful for. 

1) I'm thankful for Kyle. The King. He lights up my life and makes every day very interesting....

2) I'm thankful for my wife who is the strongest, strangest woman I've ever met...

3) I'm thankful for my family who all "get it" and who are almost all

Sunday, November 17, 2013

My Realistic Take On Suzanne Wright From Autism Speaks Comments...

As usual I'm a little late to the party with my post about Suzanne Wrights from Autism Speaks comments in her op-ed piece on the eve before the first ever Autism Summit in DC last week. 

I read her comments and then I read a lot of my fellow autism mom & dad bloggers posts responding to it, almost all bashing her for her thoughts. 

I kept quiet, read everything and really thought it through. 

And here's my take on it all. 

Before I get started just know that I'm talking in complete layman's terms here and I'll be making some sweeping generalizations and making up some stats to make my point. 

So please don't nitpick the little details. Just look at the whole picture of what I'm presenting. 


Ok so here's my take on it all. 

I'm a realist. I'm an autism dad. I try to look at things through my autism dad microscope but to also look at things from an outsiders POV

And Suzanne Wright's post sounds to me like the post of an impassioned

Friday, November 15, 2013

2 Reasons Why My Wife Is The Coolest Autism Mom









Cool like Fonzie... :-)



(originally written & published on November 15, 2013)


My wife is the best, most different autism mom that I know...and I love her for it. 

Here's a perfect example...

Reason #317 why my wife is the coolest autism mom...

She told me this story over dinner last night...

Yesterday she brought Kyle to his Thursday afternoon special needs sports class. Basically it's a movement class for ASD kids like Kyle, ages 9-12. 

The class is run by these amazing folks and the moms get to wait outside and relax and chat for 45 minutes. 

So yesterday the wife said, "we were waiting outside and all the moms had a great conversation about lipstick & makeup..."

I kinda knew where this was going so I said "I'm assuming you brought up this topic..."

And she smiled and nodded yes and continued with her story...

"So I excuse myself to go to the bathroom. I'm gone less than 5 minutes and when I get back all the moms are talking about IEP meetings and transitioning."

I said "What did you say?"

She said

Friday, November 8, 2013

An Epilepsy / Seizures / VNS Surgery Update — 11 weeks after surgery...

Three days ago, on Tuesday, has been 11 weeks since Kyle had his VNS Surgery for his epilepsy / seizures and 9 weeks since we had the device turned on so I thought it was time I gave y'all an update on things.

It's hard to give an update on one thing without updating y'all on everything cuz they are all intertwined.

Anyway, he had the VNS device turned on on Tuesday September 3rd and he's had the "current" increased 4 times since then. We go back every 2 weeks or so to

Wednesday, October 30, 2013

Choosing a bed for children with special needs: top tips


THE FOLLOWING IS A GUEST POST...


Choosing a bed for children with special needs: top tips 

Getting a quality sleep every night is important for all of us, but even more so for children, according to The Sleep Council. It’s while they’re asleep that their bodies grow and develop, the brain makes sense of the day’s activities and gets their emotions in check.

It’s often hard enough to get any children into a bedtime routine. Even if they were great as babies, they can turn into little terrors once they’re old enough to play up. However, these problems can be intensified for children with special needs.

There’s often a lot more to consider, for example

Friday, October 11, 2013

Can I Ask A Few Stupid, Naive Questions About The New Disney Disability Policy?

Can I ask some stupid questions about all this hubbub about the new Disney Disability policy?  

Now, I readily admit that I don’t know the laws and the policies well at all.  So all my questions are coming from a naive & uninformed place so please correct me if I’m wrong.  I’m really looking for answers here…

Ok, here goes…

Isn’t a HUGE part of the problem that the theme parks are not allowed to ask for proof of your kid’s disability?  Some people were abusing the system and pretending they were disabled to gain the disability “perks”, the fast passes, right?

On their website explaining the new policy it says

Wednesday, October 2, 2013

A quick video update on how the king is doing

Here's a quick update on how the king is doing with regards to autism, epilepsy/seizures, limping, breath holding, etc.




Saturday, September 21, 2013

Itinerary of a getting back to normal Saturday afternoon.

Sat 3:26pm -- Just got home from 5 hours of being out & about. Kyle's energy level is pretty much getting back to normal...

Here was our itinerary...

1) Diner for breakfast for me and wifey. Kyle barely ate, but was pretty good in the restaurant.

2) a quick trip to Costco to get one item. Wifey & Kyle waited in the car.

Friday, September 20, 2013

Keeping The Kids Healthy...





the following is a guest post in association with SuperSavvyMe 



Keeping the kids healthy
Keeping the little ones healthy is a must – allowing them to quite simply dine on anything they desire will only result in tearful, tired and unhealthy children.

As parents, we stand as the major providers for our kids, with this in mind, it’s important to prepare a variety of healthy packed lunches that the kids will enjoy. Healthy food doesn’t have to be boring and there are a number of ways to keep the kids healthy without the need for uninteresting food produce.
 

Learning to cook
Quite simply piling a plate full of green vegetables and healthy treats just won’t work. It’s important to let your children have a say when it comes to preparing dinner. By allowing them to help you create a variety of meals, they will quickly learn the ins and outs of the ingredients used. Most children possess a natural curiosity and as such, they want to know how things work, why they’re eating what and where certain food types come from.


A new approach
Everyone has different parenting techniques, some will choose to grow vegetables in the back garden in order to encourage the kids to eat them, whilst others will ban certain treats until each and every item on the dinner plate has been cleared. It’s a good idea to try out a few approaches in order to determine what works.


Conceptual framework
 It has been suggested that conceptual framework encourages the little ones to understand the reasoning’s behind why we eat the foods we do. Teaching your children the ins and outs of healthy foods will encourage them to try new things. A child that understands all there is to know about essential nutrients is more likely to eat good foods, as opposed to a child that doesn’t know any better.


Having fun with foods
 Creating shapes on the plate and making certain foods appear fun is certainly one way to encourage healthy eating habits. You may choose to mould sandwiches into animal characters or make a smiley face on the plate with a series of vegetables.

Getting the kids to interact with their food is a great encouragement tool and allowing them to try their hand at a variety of simple dinner recipes is a good way to get them involved in the cooking process. 


Embrace family meals
 Allowing the little ones to dine with you makes them feel grown-up and if everyone is eating the same meal, your children will more than likely be willing to try new foods. With so many cuisines to choose from, it’s wise to introduce a few different food types at a young age.


------------------------------------------------------------
 

Monday, September 9, 2013

VNS Surgery Scar Pictures & An Epilepsy Update...

This Autism Daddy blog is turning into more of an Epilepsy Daddy blog lately...  Oh well, that's our lives right now.  I hope y'all still find this interesting.

Anyway, I took these pics on Saturday, September 7th.  These are Kyle's scars from the VNS Surgery he had on Tuesday August 20... It's funny, there's more marks from the tape then there is from the scars!


on the neck where the wire is wrapped around the vagus nerve

on his left chest/ under arm where the small device was implanted...


Here's how it looks inside...


And here is exactly what was implanted...




The VNS device was turned on last Tuesday September 3rd, and so far we've seen no reduction in his seizure activity...but he is at a very low "current"

It's so low right now that I can't tell when it's going off at all.  It sends a 30 second current to his vagus nerve every 5 minutes...and I thought in the very beginning that I could tell when Kyle's was going off, but right now I can't.  And when I have a hunch that it is going off I've lightly touched his neck and I feel nothing.  

Again, I've asked and been told that this is all normal/typical at such a low current.

They will increase his current about every 2 weeks at the neurologists office.

So Kyle is still having some seizures...nothing too scary, but we have tried the magnet a few times and noticed nothing with that either.  

VNS Magnet

They give you 2 powerful magnets and if you see a seizure coming on, or in the middle of a seizure you swipe the magnet in front of his chest where the device is implanted for a few seconds and it sends an immediate & stronger current on demand to hopefully stop the seizure in its tracks.  

The 2-3 times we've tried it, again we couldn't really tell if it worked because the seizures were pretty short & mild, but again Kyle had no reaction to a nice JOLT to his neck.  I'm told at higher currents this will be more obvious...

So we are taking a wait & see attitude with the VNS device.  As usual, no quick miracles here.  So family members stop asking looking for a miracle!!  I tried to curb their expectations, but everyone wants it to work so badly they are SHOCKED when you don't have good news to share...

So, as I said we are taking a wait & see attitude with the VNS device.  But unfortunately, we can't take a wait & see attitude with his anti-seizure meds.  Normally you wouldn't start tweaking meds until being on the VNS sevice for MONTHS so you could be certain if the device is helping...but we gotta get Kyle off or down on one of his anti-seizure meds ASAP.

I wrote about this last week on my Autism Daddy Facebook Page.  I cut & pasted an email to Kyle's neurologist where I wrote...

"...more importantly or more troubling to us is the fact that he is still sleeping all the time due to all his anti-epileptic meds. 
It's really quite pathetic. 
He wakes up, eats breakfast, takes a mid morning nap, gets up for a few hours, eats some lunch, another nap, etc, etc. and still goes to sleep at his normal time. 
And when he is awake his energy level is pretty low. He is quite lethargic. He has points during the day when he is himself, but they are few and far between. 
He doesn't have his first full day of school til next Wednesday 9/11 but it's gotten to the point where I can't see him making it thru the whole school day without 1-2 naps. 
Now I know we're supposed to go up on the vns settings with the electrical "current" every 2 weeks or so. 
But when is a safe / smart time to start decreasing the doses on some of his meds? For us the sooner the better. 
As I mentioned in an email to you a few weeks back, maybe we are crazy or naive but i think we would take a few more seizures to have more of our awake, hyper, stimmy, happy autistic kid back...
I think VNS or no VNS we would be contacting you and would be anxious to start reducing meds ASAP and see what types of seizures (if any) return...."

Regardless of what the neurologist said the wife & I decided that we are slowly weaning him off of this med called Banzel / Rufinamide.  We are convinced that this is the one that's causing all the problems.  The other seizure meds he is on are depakote & onfi.  However, we started him Banzel back in July when he was having a lot of bigger ("complex partial") seizures, many in his sleep...and they are scary looking and this med Banzel did reduce them significantly, but they made him to a very sleepy/ lethargic boy.  

I just reread my post from back in May called "Autism Better, Epilepsy Worse? An update about my son" and read how great he was doing, and the progress he was making, and all that was before the med Banzel came into play...

So now I'm kicking myself for starting him on that med in the first place...but those complex partial seizures in his sleep are SO SCARY & FREAKY looking...  his eyes roll back and he twitches, and sometimes looks like he has shortness of breath...and this med Banzel got rid of those, but left us with zombie boy...

But we are weaning him off of it...as I stated to the dr, we will take more seizures to have our happy, awake, stimmy autistic kid back...

I've written it tons of times on my blog & FB page and I'll say it again...autism parents, heck special needs parents need to make lots of tough decisions & make crazy & bizarre tradeoffs all the time.

So this is the trade-off that we are currently trying to make...possibly bring back more seizures to bring back our severe, hyper, full of energy autistic kid...

And then hopefully at some point the VNS Device will hit the right settings & current, and start reducing these seizures...but again, I'm not expecting any miracles, and I know this all might take a while...

And I'm a realist...

I've learned from years of living this autism lifestyle to expect nothing and you'll be thrilled when something works, you know what I mean...and this epilepsy stuff is the same way...

Anyway, that more that I planned on writing.  I was just gonna post the pics and be done, and I ended up writing all this crap... so I'm gonna end it there...

Over and out...

THE END...


Wednesday, September 4, 2013

Autism Parents, There Are Other Parents Who Have It Worse Than Us Ya Know...














(originally written & published on September 4, 2013)


Ok, now with that blog post title you're probably thinking this is one of those blog posts where someone says "you should count your blessings" or "consider yourself lucky there are kids with other disabilities that are much worse off than our asd kids"

No this is not one of those posts.  I hate that sh-t.  I get that often when I vent and complain about autism, or when I lament the cognitive impairments that my son has.  People will comment that "dont complain I've got it much worse off...at least your kid is potty trained..."  or  "at least your kid can walk"

The autism mom who writes the Facebook Page Mutha Lovin' Autism said it perfectly when she wrote this on her page...
Whenever someone shares of themselves, they're just needing someone to validate them, laugh with them, cry with them....be there. What they don't need to hear is "at least your kid talks", "oh yeah, well you're lucky....my kid does ____", "just be happy you don't have to hear ____".
Somebody always has it worse or better. Always. In this community, we don't need someone making us feel bad for feeling ANYTHING that we feel. If you can't relate, just let someone comment that does. 
We need a safe place to share. Be careful not to ruin that for others.
I get that there's tons of things that could be worse about my kid, but it's my blog and it's about autism and epilepsy and when I feel like venting I vent.


I wrote this in a previous blog post...

Many of you have multiple kids and some have multiple asd kids and you hear old Autism Daddy bitching and complaining with only one kid and you're probably thinking 
"WTF?, what's he complaining about?  I've got it 5 times harder than he does"... 
To you folks I tip my cap and say, you win... you're obviously stronger than me... having one kid like Kyle is about all I can handle...so I'm weak and you're strong... I've only got 1 kid with asd and I'm on antidepressants...

So this is not what this post is about…

Here's what this post is about…


As many of you know my son starting having seizures in late May 2012.










After 3 days in the hospital bay in May 2012 I wrote this on my FB page...


MAY 23, 2013
Autism Daddy updated their status.
Wed 7:07am -- The king in the hospital for seizures, day 3. Today, most likely our last day here, brings on maybe the most difficult challenge... Keeping his majesty from eating or drinking anything between now and 2pm-ish when his MRI under anesthesia is scheduled for. I'm bracing for a long & torturous 7 hours.
:-(

And many people were OUTRAGED that they expected my autistic kid to have to wait til 2pm for his MRI!  How dare they?  They should make special allowances for him!  He can't go without eating!

And I responded a few hours later by writing this...



MAY 23, 2013
Autism Daddy updated their status.
I love you guys. You guys are so angry & outraged on my behalf. :-)
You guys are making me feel bad. Lol. Like I should be more mad than I am and screaming at the top of my lungs about my kid not having his mri til 2pm today and having to fast all day...but I'm really not, I really can't be.
.
Who knows who's already in front of us in line today and what their stories are?
And there's a helicopter landing pad right outside Kyle's room. What happens if some emergency car accident / brain injury flies in at 1:30pm?
What happens? We get bumped out of our 2pm slot. That's life. Then we take our lumps, lick our wounds... 
Our autism kids are special, yes, and you all know that I always play the "autism card" when I feel I have to (like at amusement parks :-) but this is one situation where my kid's situation and autism and seizures and not eating for 7 hours may not be as important as 50% of the patients here. 
They have a Ronald Mcdonald House attached to this hospital which leads me to believe that there's some very sick kids here with parents who have to LIVE here for weeks (or months).
This is one place where autism and epilepsy might not be anywhere near the top of the list... 
You know what I mean?

——————

Then in September 2012, Kyle had hernia surgery and was sent home from the hospital same day and I wrote this…



As we left I had a moment that really put things in perspective. We were at a children's hospital. And as we were walking to the car with the king and 2 bags of supplies for the 7 hours we were there (iPad, books, clothes, water, etc) there was a mom & dad walking near us in the parking lot.  
The dad was carrying 2 small plastic bags and his wife said to him "I can't believe that's all we have for 7 weeks here.". And he said, "7 weeks?". And she said "Yep we were here 7 weeks to the day..." 
And all I could think is...Wow...A hernia surgery is nothing compared to whatever those folks had to deal with with their kid.  
And autism and seizures are probably nothing compared to whatever caused your kid to be in the hospital for 7 weeks.  
Really feel thankful and lucky right now.  
I'm sure that will go away in a day or two when Kyle acts dizzy or has what might be another silent / absence seizure. And then I'll be stressed and back to my usual "woe is me..." 
But for right now I feel thankful & lucky....


————


And then just this week I wrote this while waiting outside Kyle's neurosurgeon's office…

Tues 12:19pm -- Successfully playing "The A Card" with Kyle's neurosurgeon's office.
He has a 12:30pm appointment. We were shockingly 25 minutes early. We parked, I called the office and said "we're here, any chance of getting in early cuz as you know Kyle has autism and waiting rooms can be torture for him" 
No way to get in early (of course) in fact the dr was an hour late and there's 3 patients ahead of us... 
But they took my cell phone number and will call us when he's next! So we're all sitting comfortably in the minivan. Me in the drivers seat writing this, Kyle in the middle row watching Dora and eating Cheerios, and wifey in the third row catching some zzzzs.

 And many people were outraged that he was running an hour late. A few people suggested I let Kyle run wild in the waiting room, put on the full autistic show for them, that'll teach them!  and watch how quickly you get to the front of the line after they witness an asd meltdown.

And I wrote back saying...

Guys, he's a neurosurgeon. 2 weeks ago Kyle was having surgery at this time on a Tuesday. Maybe a brain surgery went long?

Now here's my point. Here's what this post is about.

Y'all know I got no problem playing the a card. I play it at amusement parks, I got the handicap parking placard, and just Tuesday I used it at the dr's office.

But I will readily admit that both dr's offices and hospitals are different. They are 2 places that very often our autistic kids shouldn't come first.










Sometimes the typical looking kid sitting next to your asd kid in the doctor's office could have a much more pressing emergency than your kid...maybe he's not typical at all...maybe he looks typical but has cancer or lupus or tons of other things...

or maybe he is typical but just has the flu...and your asd kid is just there for a checkup.

So while your kid having to wait might cause him to have an absolute meltdown and ruin his (and your) whole day... medically the flu beats a checkup (and meltdown) so all things being equal the flu kid should see the dr first.

An all out meltdown is horrible...trust me, I know...but it's really nothing medically...it is a behavior.

and the idea that we should let our kids melt down in the dr's office just to teach the dr's staff a lesson or to force our way to the front of the line is ludicrous...and it's cruel to our ASD kids. In my opinion, if you know you can avoid a meltdown you avoid one at all costs.

Basically just because our kids have autism doesn't mean that we can always manipulate their situations to our benefit.

And now that Kyle has epilepsy the same holds true. We were at the neurosurgeon's office on Tues.  Kyle had surgery to implant a VNS device in him 2 weeks back to hopefully help reduce his seizures.

It was a tramautic experience for Kyle and for mom & dad. It is surgery after all...but in the grand scheme of things it's probably the easiest procedure of this surgeon's week.

So as we are sitting in his office (after sitting in our car) and as it's now 90 minutes late for our appointment and I look around the waiting room and start thinking. "This guy is a pediatric neurosurgeon. So every kid in this waiting room has a situation that might require surgery, most likely brain surgery. That is HEAVY SHIT!"

And yes I know they might be typical kids who after this surgery will lead happy typical lives while I've got autism & epilepsy on my son's plate probably for the rest of his/my life but right now in that moment in the waiting room they're problems are equal to or probably worse than my son's problems...and the look of worry on their parent's faces beats the look of worry on my face.

And why was this neurosurgeon running 90 minutes behind schedule?, why did he show up an hour late?  I was right...because he was performing brain surgery and there was a complication and the operation took an hour longer than scheduled.


But Kyle's pediatrician is always making us wait too damnit!  :-) …but you know why?  Because he never says no to us... When it's an emergency he almost always says "bring him right in"…

So when we have a scheduled appointment for a checkup and we he takes us 45 minutes late I think about all the emergency cases he probably snuck in before us.

So the next time you are in a dr's office or god forbid a hospital and you've been waiting a while and your ASD kid is starting to meltdown, take a deep breath and look around the waiting room and think about all the stories behind those faces and think where does my kid's situation rank?

----


Ok I'm gonna end it there.  I haven't written one of these long rambling blog posts in a long time.  I hope I made sense…  :-)

Over & out…

THE END!
-- 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 2, 2013

Tomorrow is a big day for the king! School & the Bionic Man ;)

Tomorrow is a huge day in the ol' AD household. The king has his first day of school. It's only a half day of school which is good because tomorrow afternoon we go to the neurosurgeon's office and the king gets his bandages removed and the VNS device turned on.

And then we find out what super powers the Bionic King will have. :)

Yes tomorrow will be 2 weeks since he had the VNS Surgery and 2 weeks since he had a bath or shower :) and yes he kept the 2 bandages on the whole 2 weeks.

We only had to change the outer bandages twice and we never got to see the scars because the inner bandages stayed put the whole 2 weeks.

Shockingly the bandages, one taped to his neck and one taped near his underarm on the left side, never really bothered him that much.

And by the 6th or 7th day after surgery he seemed pretty much his "normal" self.

I put normal in quotes because his pre-surgery normal wasn't really that normal. Just like pre-surgery he's still very sleepy / lazy from his daily trifecta of antiseizure meds...and he's still having seizures daily...small ones that many of you wouldn't even notice, but he's having them...

So the hope is that the VNS device makes a big difference in his seizures so we can reduce some of these meds as soon as possible.

As for school, here's the schedule. Half days on Tues & Wed, off on Thur & Fri for the Jewish holiday Rosh Hashanah (many public schools in the NYC Metro areas have these days off).

All that is fine, but then next week he's got half days on Mon & Tues as well. WTF? His first full day of school is next Wed!!

Normally that would annoy me (and it still does a little), but this is one time where Kyle might need the extra time to adjust to 3 new things...(1) adjusting to the vns device and how that feels...sending pulses of electricity to a nerve in his neck might take some getting used to, (2) adjusting to just being back in school after 3 weeks off, and (3) while he's gonna be in the same school, in the same classroom as last year, with some of the same kids and some of the same teachers aides & assistants, there will be a new teacher and Kyle might have a new 1:1 aide...

So maybe this dipping his foot back in the water schedule (two half days, two days off, 2 half days) will be just what his majesty needs...

Anyway, I'm taking off from work tomorrow to go with wifey to drop the king off, meet the new teacher, then the wife & I will run some errands, pick Kyle up, maybe go to a diner for breakfast/ lunch, and then head to the neurosurgeons office to complete Kyle's bionic man transformation...

And then hopefully will get the ok to give this kid a bath!

That's it... OVER AND OUT...

The end...

Monday, August 26, 2013

Day 6 after VNS Surgery... a much more "typical" day

What a much more "typical" day in the ol' AD household.

It's Monday at 8:01pm and I'm sitting in the dark in the kings bedroom writing this on my phone. I just brought him up to bed.

It is 6 days removed from his vns surgery implantation and things are slowly starting to get back to "normal" around here (whatever that means).

The wife reported that he napped a lot less today (only one 45 minute around 11am). And was a lot more "with it".

They went for a SHORT walk in the park and then went over my wife's sisters house for a little while this afternoon.

That visit ended when he made it crustal clear he wanted to leave when he hit his aunt. :(

When I got home he was raging a bit as well. And he was a bit weepy.

And as bizarre as this may sound... it was good to see.

Less zombie / sleepy behavior and more autistic behavior is a good thing in my book :) It means he's healing and heading back to normal Kyle I think.

I think finally 6 days after surgery he's feeling himself enough to know that his bandages are finally pissing him off and that he's in some pain/ discomfort from the 2 wounds.

After writing my post yesterday about the king's recovery I've learned a few things from chatting with others who've had the VNS Surgery and from joining a VNS surgery group on Facebook.

Here's one thing I've learned...even though for many it's a send you home the same day "procedure" and for Kyle and most children it's a one night in the hospital "procedure" it's still SURGERY and for many it kicks your ass big time.

Many I've chatted with said they were in pain & discomfort for 1-2 weeks after surgery and some were sent home with Vicodin for their pain.

I guess, stupid me, heard it called a "simple procedure" and thought he'd be back to normal in 2-3 days.

And Kyle was only sent home with instructions to give Tylenol as necessary, no Vicodin.

For the first 4-5 days even Tylenol kinda wasn't necessary cuz he was totally out of it.

But today I think he was well enough to know that he didn't feel well...if that makes any sense. And I expect the next few days to be filled with some rage and some Tylenol and maybe some Advil as well.

8 days til we turn the device on so hopefully he's totally back to pain free normal before then...

That's all.

8:18pm now and he's asleep and I'm gonna watch my new tv obsession "Under the Dome".

Just started watching it...Trying to catch up...

Goodnight all!

Sunday, August 25, 2013

VNS Surgery Update... 5 days after surgery


This nonverbal thing is really hard sometimes. My son not being able to tell me how he feels really sucks...

Today is Sunday at 5:55pm. The king had the vns surgery on Tuesday morning.

And just like with his hernia surgery in Sept 2012 he had us fooled.

This time he was fine in the hospital, fine the next day. Thursday & Friday he was a bit extra sleepy and mushy. And yesterday (Saturday) he pretty much slept the entire day. And when he was up he was kinda wobbly and unsteady when he walked.

As usual I freaked out and started googling stuff and as usual the wife was concerned, but calm.

WIFE: "He just had surgery. He's only 10 years old. Everybody recovers differently. Think about how many days my dad was out of commission from that small procedure that time..."

We called the surgeon and he didn't sound too concerned. Didn't have any answers for us either, he said -- "anesthesia & morphine from the surgery should be out of his system by now. so I doubt it's that..."

But again he didn't sound too concerned. Not like "go to the ER now" concerned but more like "come see me on Monday if you want" concerned.

Then yesterday evening he vomited a little.

After that he seemed a lot better, but still tired.

We called our pediatrician as well to run everything by him and again he didn't sound too concerned either. "How's his color? Any fever? How's his mood?"

All great. Good color, no fever, great/happy mood when he is awake...

"Come see me Monday if you're still concerned"

So we let him sleep in our bed last night so we could watch him closely.

Today has been more of the same. He's a bit more awake. And a bit more "with it" but his balance is still off.

And all this isn't too far off from where Kyle was before the surgery...

The week before when we were on vacation he was sleeping a lot and a bit zombie like when awake because of his anti-seizure meds...but we made a med adjustment midweek that week which woke him up a bit...but brought on a few more small seizures...a trade off we accepted.

Maybe he's just back to the meds making him sleepy, wobbly, etc

Or maybe with the trauma of the surgery he could be having more seizures...maybe the ones that are hard to see the "silent seizures".

That could explain some of this. He sometimes sleeps a lot after a seizure cluster.

This is why they don't turn the vns device on for weeks so you can separate what's complications from the surgery VS. issues with the device.

But with Kyle it's so hard because there's no normal. All summer he hasn't had a baseline of normal. We've been tweaking meds all summer. He'd have a week with a lot of bad (complex partial) seizures in his sleep so we started a new med to try & combat that. We'd go up slowly on that med and he'd be napping in school. Then when he was too zombie like we started going down on that med.

Anyway he seems a bit better this evening and I need to stop googling things and watching him like a hawk.

The wife actually kicked me out this afternoon, told me to go see a movie. I went to see the new comedy "The World's End".

Great movie which took my mind off of all of this crap for exactly 1 hour and 49 minutes. And then I got back in the car, got that pit in my stomach, and texted the wife to get the update.

And I got Breaking Bad & Dexter which will take my mind away for 2 hours tonight.

Anyway, that's my quick update.

And as usual, all the family is checking in asking how Kyle's doing and are shocked when we tell them the truth that he's still kinda off 5 days removed from "minor surgery"

And I can tell by the sound in their voices that they are thinking that when it's turned on that this vns device is gonna be some miracle and take all of Kyle's seizures away.

And I don't want to be Debbie Downer, but i want to bring their expectations down and tell them it's probably gonna take a while and it's only significantly successfully in half the people that get it.

Anyway I'm rambling. The main takeaway here is that the king had vns surgery on Tuesday and still isn't completely back to himself (whatever that means) on Sunday at 6:36pm which is longer than I expected...

The other takeaway here is as usual the wife is the calm one, the voice of reason ("do you want to bring him to the ER right now? then there's nothing we can do now so while he's napping I'm gonna cook why don't you clean out the garage")

The last takeaway?

This nonverbal thing is really hard. My son not being able to tell me how he feels really sucks.

Can't wait to go to work tomorrow to get my head out of this for 8 hours... :)

...unless we end up back at a dr's office... :(

THE END.

Wednesday, August 21, 2013

AUTISM DADDY'S REVIEW OF AUTISMATE IPAD APP



I was asked a few months back to review a communication IPad app called Autismate.



I said yes because I haven't really done reviews before and thought it might be interesting to start doing them...



But then I put it off for weeks partially because we were going thru a lot at home with the king...but mainly I put it off because I felt it wasn't an app that would be appropriate for my son Kyle.



Unfortunately most of these types of apps are still way over Kyle's head who's still working on PECS with one "desired" item & one "undesired" item.



And the types of drawings that are in these apps mean nothing to Kyle.



He has a hard time generalizing so a drawing of teeth brushing will mean little to him; a pic may mean a little more, a pic of him doing the activity would probably work best of all.



So I assumed this app would be way over Kyle's head and mainly for that reason I put it off for weeks...



But I promised these guys a review and I figured I would review it with many of my readers and their kids in mind because I'm sure many of your kids would find this app appropriate.



So I downloaded the app from the iTunes Store and starting playing around with it.



And it's pretty darn cool!! And it uses the iPad technology to the fullest. And while it’s still over my son Kyle’s head right now...it’s a lot closer than any other app I’ve seen before.



Here’s why...



Yes it has all the grids and PECS style pics and sentence building features like proloquo2go does... (but this one is $70 cheaper...)



But this one does a whole lot more. Everything is based on locations. It comes preloaded with pics of a house and in that house are pics of a kitchen, bedroom, and bathroom.



And on each of those pics are “hotspots”. You touch the fridge and a pic of an inside of the fridge will pop up.  You touch the sink and it will say “I have to wash my hands” or will show a video of a kid washing his hands.






And all that is great and different, especially the video part, but what really sets this app apart for me is the fact that you can take your own pics of your own house, and your own kitchen, bathroom, etc. Then you can record your own voice saying the phrases...and record video of your own kid (or yourself) doing the task.



For a kid like my son who has a big problem generalizing, this is HUGE to be able to have a communication app that will have pics & videos & voices that he is completely familiar with.



You have to be familiar with Ipad functionality to customize everything and it will take some time, but the app is pretty intuitive. And once you set up your “home” and all the rooms in it, you can then move on to other locations...school, Grandma’s house, Trader Joe’s, Walmart and customize all your pics, videos, phrases, from these locations.





You can also mark the GPS location of all your places so when you open the app at a particular location (and that location has wifi) Autismate will recognize where you are and the closest location to the current GPS position will appear.



That’s what I mean about using the capabilities of the Ipad to the fullest.



A few weeks ago, the wife and I slowly began setting it up, taking pics of the rooms in my house. I wasn’t thrilled with the quality of the pics I was getting from the iPad camera (not the app’s fault) so I grabbed my digital camera took the widest, brightest pic of each of the rooms in my house and then I downloaded into my iPad.



We used these pics, with her voice, and iPhone video of me doing some of the tasks (like brushing my teeth). We did all of this while Kyle was asleep. And she & I had a blast, goofing on each other as we were recording the voices & shooting the videos. (if only you could keep the bloopers / outtakes!)



In the morning we showed it to Kyle and while there weren’t any miracles, it looked like he recognized the pic of his bathroom, the sound of mom’s voice, and the videos of dad. We got a couple of smirks from him before he pulled the ipad from us and put on an episode of Dora the Explorer.



But its baby steps for Kyle and we saw a sliver of something with this app that we’ve never seen with any other communication apps. Our school district actually “bought” us the proloquo2go app last year and it’s just been sitting there barely used for a year...but this one I really can see the potential for Kyle to “get it”



Ok so to finalize my review and make it more “official” here’s some other things that the Autismate app features...



--Visual scenes can be personalized to each user (Scene Based AAC)

--Full Sentence Builder (Grid-based AAC)

--Video Modeling

--Photo Schedule with Timer (very useful for kids who need routine and a visual schedule)

--Visual Stories

--Content Library – More content is always being added and will be accessible to existing users.

--GPS Enabled – Use GPS to tie certain scenes to your physical location

--Capable of Building Multiple User Profiles (could be used by a teacher and customized for a few different students)

--Over 10,000 Symbols included



But as you can tell it’s the personalization that has me the most excited.



AutisMate is available on the iTunes Store for $149.99. That may seem like a hefty price, but it’s within line of other autism therapy apps, like the $219.99 Proloquo2Go. It’s also way cheaper than the old, pre-iPad therapy / AAC machines, which used to cost up to $15,000.



And if you are not sure if Autismate is for you, you can now get a free LITE version of the app by going to
http://autismate.com/PressReleases/AutisMate-LITE-Learning-App-Adults-Children-with-Autism/ 


So there you go, there’s my first review. What did you all think? How’d I do?

Tuesday, August 20, 2013

VNS SURGERY: HOW DID WE GET HERE?




(originally written & published on August 20, 2013)



If you've been reading my Autism Daddy Facebook page today you'll know that my son Kyle had VNS Surgery today for his seizures / epilepsy. If you don't know what VNS Surgery is, read this.

http://epilepsy.med.nyu.edu/diagnosis-treatment/vagus-nerve-stimulation-vns

It's 10:18pm and I'm writing this on my iPhone in the hospital while the king is sleeping peacefully next to me.

Wifey is sleeping on the couch behind me. We are taking shifts staying up to watch Kyle to make sure he doesn't try to pull at the bandages while sleeping or have a seizure in his sleep.

So how did we end up deciding to do the VNS Surgery?

Well autism has taken a major back seat to epilepsy the past few months in the ol' AD household and we've been doing a lot of med tweaking and dealing with some side effects, mainly major sleepiness and some zombie like behavior when awake.

And even with all these meds in his system he was still having seizures daily. Not scary looking tonic clonic seizures, mostly small silent seizures or seizures where he gets this cute smile on his face and kinda zones out for 10 seconds. And sometimes in his sleep we'd see bigger "complex partial" seizures.

But the point is with all the meds he was on he still having seizures daily...most days enough to count on 2 hands.

So here's the deal. Kyle has epilepsy. He has a type of epilepsy called Lennox Gasteau Syndrome which is a hard to treat with meds form of epilepsy. He's on his 4th medication and is still having seizures.

And I live in the NYC Metro area and Kyle has a great neurologist and we recently saw a "Top Doctor" manhattan neurologist for a second opinion.

And both docs say that if after trying 3-4 different anti-seizure meds you're still having "breakthrough" seizures and if you're seizures aren't under control, the odds of you finding a med that will work are slim to none. You have "refractory epilepsy"

Your options then are...

1) keep trying more meds anyway

2) Brain surgery (scary, scary stuff!)

3) Ketogenic diet

4) VNS Surgery.

And I know what you're thinking and many have asked. "Have you tried the Ketogenic diet?" "Wouldn't you try the diet before opting for surgery?"

And my answer is no, not for Kyle. If you've been reading my page for awhile you'll know that Kyle had major eating issues. He stayed the same weight for almost 3 years and his diet was extremely limited. And we had to force him to eat every day and it was excruciating.

But since November 2012 he's put on over 25 pounds, probably mostly due to a side effect of one of the antiseizure meds he's on (depakote).

This is a side effect we welcomed with open arms! The king now has an appetite! He's trying new foods! He looks the healthiest he's looked in years!

To put him on the Ketogenic diet, which is one of the most restrictive diets out there (kinda like a much much stricter, modified Atkins diet) would be tough.

If my kid was verbal and understood why I was denying him all the foods he loved it would be extremely difficult. To deny my nonverbal autistic kid the foods he loves and he doesn't grasp the reason why is (in my opinion) virtually impossible and kinda cruel.

So in the wife and my opinions, the diet is off the table. You may not agree with us, but we stand by that.

So the diet is off the table, brain surgery is scary shit so if we can avoid that for now we will.

And that leaves us with trying more meds or VNS surgery.

Now let me tell you that my wife was all gung ho to move forward with the VNS Surgery months ago. So much so, that when we had an appointment with a neurosurgeon in July she asked him to pencilled in a date for the surgery which was today Tues August 20th. Her reasoning for doing it then? We get our annual lake vacation in the week before which Kyle loves, and the surgery and recovery would all get done before school starts again in September.

I was a lot more apprehensive about the surgery. Why? Because of some of the comments & feedback I've gotten from some of y'all when I've written about it. And because I started googling it.

And I read about some possible side effects. And it is still SURGERY which is always scary.

And what if what's the device is inplanted and turned on and working, what if he's in pain or it feels weird and he can't tell us.

And when I mentioned this to the wife she said, "who knows what he's feeling now with the meds? maybe he's in pain now? maybe he's got a massive headache and can't tell us?"

"and he's sleeping his life away..."

And that's the reason why we don't want to try any other meds... He's sleeping a lot.

The cocktail of meds he's on now make him very sleepy. He's been napping 60-90 minutes at school pretty much every day this summer. Then he'll have a late afternoon nap, and he'll still go to bed for the night around his normal time.

And the hope of the VNS Surgery, even if it is somewhat successful, is that we can get him off some of these meds...or at least down to a lower dose so he can get his life back...get back to his normal hyper stimmy autistic self.

I never thought I'd say that, but after seeing zombie boy this summer I'll take stimmy autism Kyle back. The happy version, not the 2011 "summer of rage" version. :-)

So all summer we've had that August 20th date hanging over our head. We had our vacation last week and had the surgery today and so far so good.

And that's where we are at.

We leave the hospital tomorrow and he hopefully has a few days at home to recover and will be back to normal.

One thing to note is that the device is not "turned on" during the surgery. That happens 2 weeks later in the surgeons office. The reason for that is this way they can more easily tell if something is a complication from the surgery vs a complication from a setting on the device.

So 2 weeks from today they turn it on and then every 2 weeks they adjust the settings of the stimulation that is being sent and we monitor his seizure activity to see which setting is the most effective.

Then we start reducing meds and seeing if seizures come back...and tweak and adjust as needed.

So this is all gonna take awhile, but we are glad to have the ball rolling.

Thanks for all your thoughts and prayers and kind words on Facebook today and in the days leading up to the surgery.

That's it. Over and out.

Now I'm waking up the wife so she can start her shift watching kyle and I can get some shut eye.

G'night all!


THE END.

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051914

Wednesday, May 29, 2013

An update on Kyle's at home EEG test...

Wed 8:50pm -- Just got home from the EEG place. Kyle did awesome! The quadruple whammy of 2 Benadryl, swaddling him up in a sheet like a mummy, daddy sitting on his legs, and mommy playing Sesame videos on her phone 10 inches from his face throughout the process did the trick.

He is now asleep in his room and I'm sitting in a rocking chair on the side of his bed.

The wife and I will be taking shifts tonight...watching him as he sleeps (a) to make sure he doesn't pull the EEG wires off and (b) if we see any possible seizure activity there's a button we're supposed to press.

Did I mention it's a video EEG so there's a camera pack that we take from room to room so they can see exactly what the seizures look like and compare it against what they see on the EEG report.

The wife asked the technican, "Does the camera have audio?"

It does!! So we have to watch our potty mouths and not complain about any doctors or they'll have us on record! :)

Anyway, tonight's the easy part. It'll be easy when he's sleeping.

Tomorrow when he's awake and wanting to pull the leads off will be a different story.

But we've called in reinforcements. I'm taking the day off from work...and my sis-in-law & niece will come over in the late morning to give us a break and try to distract Kyle as much as possible.

We'll get thru this fine. In the grand scheme of things this is nothing. We've been thru a lot worse than this with his majesty.

The end game is to get the results and hopefully find exactly the right med to put him on so he's almost completely seizure free.

And as I've mentioned before, if we don't find that med, we'll probably be looking at VNS surgery.

But I'm getting ahead of myself. Wifey just came in to take a shift so I can scarf down some dinner and watch some of the Yankee game.

Talk to y'all later...

:-)

THE END…


For more of a back story of why he's getting this EEG & what the VNS surgery is all about read the blog post from earlier this month called "Autism Better, Epilepsy Worse?  An update about my son"

Wednesday, May 22, 2013

The King Eating a Late Dinner on a Wednesday Night -- a video blog post...

Wednesday 8:11pm -- The king took a long, after school, late afternoon nap.  And he awoke just as I got home from work...just in time for daddy to feed him dinner...

Here's the sights & sounds of that dinner...

PART 1...
 https://www.youtube.com/watch?v=PN5uSR6KUMU 



PART 2...
 https://www.youtube.com/watch?v=5VoWVNmTdGg  

That is all...  Have a good night!

THE END...

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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....

Monday, May 13, 2013

An Audio Blog From Autism Daddy — a recap of the king's bd weekend & more...


I'm trying something new. This is a long rambling audio blog post I recorded while driving home from work.

In it I recap my autistic son Kyle's birthday weekend.

Then I talk about our Mother's Day festivities.

I also look ahead at the EEG test Kyle has to get due to his seizures…

Let me know what you think…  :)







the king's 10th birthday pool party...

the party room all set up thanks to my wife's family waiting for 20+ kids to finish swimming  



the king's 3rd bd cake… on mom's day at our house...

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