Tuesday, July 15, 2014

A Note Home From Kyle's Teacher Got Me Thinking...

So Kyle is in Summer School / ESY (extended school year)

He goes to school five days a week from 8:30AM to 2PM for six weeks until mid-August.

Yes, yes. We know how lucky we are. That's not what this post is about...



So the school is in the same building as during the regular year.  He's in the same classroom, but with all new teachers and aides.

I'll be honest. We don't expect much out of the summer program.  Basically our hope is if it keeps Kyle from having a big regression when school starts back up in September we're happy. My wife calls the summer program  "maintenance".

But school has been in session for week and a half already and so yesterday wifey wrote a nice note to the teacher in his communication book just asking how things are going.

Because at home Kyle has run the gamut the past few weeks.

Happy, mad, related, zombie-ish, aggressive, sleepy, seizurey, etc.

So she wrote a note to the summer teacher asking what he's been like.

"Has he been happy for the most part, sad, indifferent?" she wrote...

The note back from the teacher perfectly encapsulates my son and his unique & challenging issues...

The teacher wrote...

"...as for Kyle.  He's not happy or sad, more like indifferent.  He does what's asked of him and will participate when I ask him to do something. He's physical sometimes but nothing that's extreme and can't be redirected. I do enjoy working with him and he does try when he's asked to do something.  Overall he is doing fine...."

So that's my son in a nutshell and perfectly captures him.

He's indifferent. But overall is doing fine.

And he's been that way for YEARS. Just going thru the motions at school. The biggest challenge always for his teachers over the years is always finding what motivates him. And using that thing (popcorn, iPad, chips, etc) as a reward to motivate him to do "work".

But with Kyle his motivators change from day to day, hour to hour. 

One day he can't get enough of a certain Dr Suess book. Then the next day he couldn't care less about it...but only wants this weird baby doll....then the next day the doll sits on the floor all day, but he can't get enough of the "Elmo Visits the Firehouse" special on his iPad.

And even when you find the right motivator on the exact day in the end they are not all that motivating.

He just doesn't want to work. He's indifferent. At home he's content to hold his breath & watch tv & play/watch his iPad all day long.

And I get the impression that he'd be happy to do that all day at school if they let him.

But they challenge him...as they should. And he goes thru the motions. He gives them just enough, the bare minimum to get by...

And I know what some of you guys are thinking... 

You're his parents.  You should be doing more.  You should be challenging him more at home and pushing the school to get more out of him.

And a few years back, you were probably right.  Maybe we should have been doing more a few years back.  But now with the epilepsy thrown on top of the autism and all the medical challenges that seizures bring we just can't do it. 

We have to pick & choose our battles.  It sometimes feels like we're going from crisis to crisis with Kyle.  Some are small crises (major sleepiness from meds) & others are bigger (seizures, dental surgery, etc), but in my opinion each of these get in the way of any possibility of any real progress at school.  

And some of you might not even consider some of that stuff as a crisis.  But to us they are.  And sometimes it feels like each of these crises take up all the brain power that me & wifey have left.  And when we have a calm non-crisis couple of weeks we relish it.  And so the thought of pushing Kyle harder, or pushing the school to push Kyle harder seems crazy to us.  

Anyway, Kyle hates it when we try to push him, when we try to "work" with him...

I wrote this in a previous blog post...

... if your kid shows a glimmer of interest in learning it makes it SO much easier to "work" with him on your own. 
When you get something back from your kid when you use a particular teaching method (ABA, Pecs, etc), even if it's just a glimmer of something, an iota of something it makes you want to work with him on your own outside of the "school day".
We haven't seen that from Kyle in a LONG time. He doesn't enjoy learning anymore. With mom & dad he gets stressed when you ask him the simplest question like "point to nose"

I guess what I'm saying in that quote above is, that just like Kyle, the wife & I lack a good motivator.

I wouldn't say that we are indifferent, but just like Kyle it does feel like wifey & I are going thru the motions sometimes. 

And just like Kyle it does sometimes feels like we are doing the bare minimum to get by...(but in reality it's to survive...)

But just like Kyle, overall you could say we're doing fine...


Wow, I just planned on posting the teacher's note and being done with it, but all this other stuff came pouring out.  Hope all this gibberish makes sense to y'all!


If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

Saturday, July 12, 2014

A Successful Outdoor Movie Outing w/ the King

Sat 7:39am -- Every once in a while the king throws us a bone and let's us have one. 

Last night we rolled the dice & left the house at 7:45pm and dragged Kyle to an outdoor movie under the stars. 

The autism spectrum baseball league that he belongs to (and usually doesn't enjoy too much) was having a free screening of "Frozen" on their field at dusk. 

Everything was stacked against us.  

-- We usually give him his melatonin by 7:30pm lately and by 7:45 he's well on his way to winding down for the night. 

-- He's been VERY aggressive and ornery this week. 

-- He rarely makes it thru a whole movie in the theater. 

-- He doesn't enjoy other movies or shows with characters that he doesn't know. He only sits thru Sesame, Dora, & Jack's Big Music Show

But wifey LOVES the idea of these kinds of summer activities like this or fireworks so we held off on the melatonin, packed a big blanket, some snacks, a few books, and Paula and headed out at 7:45pm with the attitude that we'll take it as far as he will allow. 

And he did really great!

We got there about 8:15. Movie didn't start til 8:45pm. 

And He made it to the end! 10:15pm-ish. 

He really seemed pretty engaged by some of the musical numbers in the movie and he wasn't engaged by the movie he didn't seem to mind just hanging out. 

He sat for most of it. But wanted to walk around a bit a few times.  

We walked to the back of the outdoor screen which was cool. We got some of their free popcorn!  And then we went to the bathroom when he let me know that he had to go pee. 

We gave him his melatonin on the ride home and he went immediately to sleep when he got home. 

All in all it was a GREAT night!  

Night's like that recharge the wife & my batteries a bit and remind us that we need to push him out of his routine & his comfort zone more often. 

So along those lines we might roll the dice again tonight and try to drag him to a local fireworks display!

But if tonight doesn't go that well we just need to shrug it off and bask in the success of last night. 

And chalk it up to every once in a while the king throws us a bone and let's us have one. 

Have a great Saturday everyone!

Tuesday, July 1, 2014

10 Tips To Survive a Hospital Visit w/ a Severely Autistic Kid

Ok, so I'm totally cheating here.  This isn't a true list, but I know the Internet loves lists.  All my most read blog posts ever are all lists... 10 Things this, and 12 Ways that... So I thought let me try to put my thoughts into list form so I can reach the most amount of eyeballs...

So anyway, if you've been reading my Autism Daddy Facebook page recently you'd know that we had 2 hospital visits in the past week for Kyle.  Neither were emergencies.  Both were planned.

One was overnight EEG to get a look at his seizure activity.

And the other was dental work under general anesthesia.

And Kyle did AMAZINGLY well with both visits.  I think it's a combo of him maturing and the wife and I being experts at what to expect and knowing what to do/bring to make things go as smoothly as possible  So I thought I would write a post to impart some of my wisdom.  :-)  Some of these tips apply to hospital visits with special kids in general, others are more specific to EEG or dental work.

Here are some that made the EEG go extremely smooth.  

1) We brought a TON of stuff with us.  All of Kyle's favorite books, dvds, stuffed animals, ipad came with us in a HUGE suitcase.

all this for one day in the hospital & we actually used most of it :)

Within minutes of checking in to our room at the hospital wifey puts all the books around, props them up on display so it looks like the King's room.

from a different hospital stay in Aug 2013, but you get the idea

2) We asked for all the forms that we would need to fill out in advance.  And wifey had a length conversation with the EEG scheduling guy telling him all about Kyle and how difficult it can be to get the EEG leads on his head.  And how we'll need their best EEG tech, and maybe even a 2nd person to assist.  And in the pediatric epilepsy wing in this hospital there was 2 private rooms and 3 double rooms and wifey stressed that a private room would be better for us because if they put us in a double we'd feel bad for the other kid that'll be stuck in the room with us if Kyle decides to wake up and eat popcorn and watch dvds at 3am.

3) We gave him medicine to sedate him on the drive down to the hospital.  We told the hospital that this is what we were going to do.  We told them that it's been successful in the past.  We gave him 2 Benadryl (50 mg total) and 1.5mg of melatonin.  (yes i know benadryl is an allergy med, but the active ingredient is diphenhydramine which is the exact same ingredient in most OTC sleep aids, Unisom, etc)

4)  We made sure they did things our way.  Again, this wasn't our first rodeo with an EEG with Kyle.  We've been thru 4-5 of them now.  And gluing the EEG leads on his head is always the hardest part. This is kinda what it looks like...

this is not kyle, but you get the idea

 But we know thru trial & error what kinda works.  So when we get there and Kyle is still awake (the benadryl & melatonin hadn't kicked in yet) and the nurses & EEG tech want to get started immediately "you're first on our list" we have to politely tell them no.  

"He needs to be completely asleep before we start.  Then we have to wrap him up in a sheet, the way you swaddle a baby, with his hands constricted, then tape the sheet around him, and then you can get started"

"But you're first on the schedule.  How long do you think before he'll be asleep?"

"I have no idea.  Feel free to take another patient or two ahead of us."

They never, ever hear those words...people giving up their spot, their place in line in a hospital?  Shocking! 

The nurse kept peeking in literally every 5 minutes.  We had to kick her out "he's not going to fall asleep with you just standing there."

But what was great was the EEG tech took one patient ahead of us and then quietly she got EVERYTHING ready in advance.  She had her table completely set up and ready to go with 20+ pieces of tape all cut, one for each lead, all her wires untangled, her glue all set up.

And when he was in a deep enough sleep, we wrapped him up like I mentioned and got to work.  

And he did wake up during the swaddling & the gluing on of the leads (which I told them he would), but he was calm enough / groggy enough / zombie enough ;) from the ben & mel that he didn't put up much of a fight.  And we got things done relatively quickly.  This was actually the best experience ever for Kyle at putting the leads on, partly because of a good tech and partly because mom & dad made sure they did things our way.  

5) If things didn't go our way we were prepared to pull the plug at any moment.  Kyle's first EEG ever, many years back, when they thought her might've had a seizure, he cried so hard putting the leads on that he popped vessels on his face & eyes.  We vowed we would never let that happen again.  Now A lot of squirming fine, kicking no problem, he wants to spit on me or bite me I can handle that.  But if the nurses & EEG tech didn't listen to our requests and things started to get out of hand the wife and I were fully prepared to say "screw this, we're going home" and let the insurance company & the hospital battle it out...

6) We let him eat & do whatever he wants while hooked up to the EEG.  Once the leads were on he took a 90 minute nap (thanks ben & mel!) and then was himself and was pretty much on his regular sleeping schedule for the rest of the time we were there.  So then for the rest of his awake hours it's all about trying to keep him busy, keep his hands busy so he wont try to pull the leads or his mummy hat off,

he looks pretty happy considering the circumstances :)

and try to keep him on the bed as much as possible.  (it is a video eeg so a camera is pointed at the bed the entire time).

This is when the supplies we brought come in handy.  The king gets whatever he wants while in the hospital.  He can watch tv or videos on the ipad all day long.  He can eat whatever he wants. I think he ate 2 big bags of Lay's potato chips, 2 bags of popcorn, and thankfully a ton of fruit!

7) During the night, watch the kid in shifts if you can.  While Kyle was sleeping during the night somebody needs to stay awake and watch him because (a) we have to make sure he doesn't pull off his mummy hat during the night and (b) we have to push a button if we see any suspected seizure activity.  This hospital said in all their paperwork that they would only let one parent stay over night...but we didn't even ask, we both just stayed.  They gave us a private room :-) and wifey and I worked in 3 hour shifts.  One sleeps, the other watches Kyle and surfs the net & FB on their iphone at 3am.  

Those are my tips for how we get thru the experience of a 24 EEG with a severely autistic non-verbal 11 year old.

Now the dental work is a different story.  But since I've committed to the list format I'm sticking with it so here goes...

Kyle won't let us brush his teeth EVER... and never lets the dentist get in there for a look see, forget about a cleaning or xray.  So because of that once every couple of years he needs to go under general anesthesia for a look see, xrays, cleaning, and then fixing whatever they find.  So here's my few tips when it comes to that...

8) Schedule the earliest appointment possible.  Because with anesthesia you can't eat after midnight of the day before, and my kid can get hungry in the morning.  Unfortunately because we wanted to schedule this dental work for one of Kyle's days off from school we had to break our own rule.  Our appointment wasn't until noon. So...

9) We kept him up til midnight and plowed him with lots of heavy snacks... good ol' Lay's Potato Chips again to the rescue.  Then at 11:45am we gave him his melatonin and prayed that he'd sleep a little later than usual and we'd bypass some of the morning hunger this way.  He slept til about 9:45am!  Woo-hoo!  Then in the morning he couldn't eat or drink anything before he went under

10) One parent should insist on going in to the operating room (yes, they did this in an OR even though it wasn't an operation) and be with your kid until they go under the anesthesia.  They've always offered with us, but I'm not sure if that is standard.  I'd recommend the parent that is physically the strongest but is also mentally strong cuz watching your kid just fall dead sleep in seconds is pretty scary.  I've gone in the last few times and went in this time.  They wheeled Kyle in with one of his dolls and one of his Dr Suess books on the gurney.  They put the anesthesia mask over his face (yes, a mask, not an IV every time we've done this) and I recited the Dr Suess book from memory and held him down by the shoulders while he took a few breaths and finally went under.

That's pretty much it.  The dental work included pulling 6 loose baby teeth (his last baby teeth!) and filling 2 cavities.  Pretty minor considering he never brushes his teeth and eats popcorn every day...  :-)

After he was done he slept in the post op hospital recovery area for about an hour with us at his side... and then was up & groggy for about an hour... and then they sent us home...

Anyway there's my lame list that's not really a list, but just a bunch of ways that we survive hospital visits with our king.

Hope y'all enjoyed it.


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