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...

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