Sunday, April 28, 2013

The Sights & Sounds of Sunday 2:21am... :-)

Kyle woke up extremely happy at 2am this morning. This is what it sounded like as I tried to herd him back to his bed and back to sleep.

:-)

http://youtu.be/s0ZeqrIvaso

Thursday, April 25, 2013

Autism: To Medicate or Not to Medicate? I don't see the dilemma...













(originally written & published on April 25, 2013)

People are always asking my opinion about medication.  Whether I think ASD kids should be on medication, what kinds of medication we've tried with my son.

And there's kinda a lot of controversy within the autism community about this topic... And I just don't get it.

Yes, my kid in on medication.  I've written about it before.  He's currently on 2 meds (Depakote & Onfi) because he starting having seizures in May 2012.  But even before the seizures, he's been on good ol' Klonopin for aggression/ behavior issues since September 2011.

Now obviously you have seizures, you take meds, that's a no brainer (but guess what, most seizure meds are also mood stabilizers so we are reaping some behavior benefits as well).

But the Klonopin?  The med we are giving him to tweak his behavior?  Did I feel guilty about giving him that med?  Um, no.  He was miserable before Klonopin.

I would say Klonopin was the first prescription med that we tried on Kyle that was specifically meant to curb problem behaviors.  Before Klonopin, we did lots of the biomedical things for years including the GFCF diet with little or no success.

And then in the summer of 2011, we had what I like to call "The Summer of Rage" where Kyle was pretty much a raging maniac.  He would go thru multiple stretches throughout the day where he would hit & try to bite others, would try to injure himself.  He wasn't eating.  He was extremely skinny.  He just looked miserable pretty much all the time.  He looked like he wanted to crawl out of his own skin.  







We ruled out lots of medical reasons for this behavior.  It was chalked up to just that, a behavior.  He was just a miserable, unhappy kid.  The 6 week summer school session in the summer of 2011 was especially bad.  I would literally CRINGE when my wife would text me throughout the day, just waiting to hear another bad report from school...or how he lunged at my wife's father.


The summer of rage can be summed up with this one picture.





That's a picture of me after Kyle threw a fork my way when I was trying to coerce him to eat.  And the 4 prongs went just above my eye.

So the decision to medicate was pretty easy.  Our son wasn't happy in his life.  He couldn't tell us what was wrong, but he wasn't happy.

So we went to see a local psycho-pharmacologist who specializes in asd kids and she recommend two oldies but goodies.  Klonopin & Thorazine.  

I wrote about these two meds in a previous post (READ) and I wrote...

"Over summer of 2011 Kyle was filled with RAGE. He was very violent and having multiple major meltdowns/ tantrums per day where he could be self injurious and hurt one of us. Starting in September, with the help of a psycho-pharmacologist who specialized is spectrum kids we've had him on low doses of two old school meds, 2 meds that if you use google will scare the bejesus out of you, 2 meds that were talked about in the book/movie "One Flew Over The Cuckoo's Nest", and 2 meds that have helped Kyle IMMENSELY...

The 2 meds?  Klonopin & Thorazine...

2 scary meds, in very small doses that have rewired his brain a bit and improved Kyle's quality of life and made him a much happier kid.  He is NOT a zombie in any way. He is just Kyle but without most of the meltdowns/ violence..."

And the Klonopin he's been on ever since.  The Thorazine he's been off since he started some of the antiseizure meds.

Anyway, back to your questions.  People will write me and tell me about how violent their kids are or how unhappy their kids are, but then they'll say things like "I don't believe in medication" or "I don't want to make him a zombie" or "I don't want to change his personality"







You don't believe in medication?  What does that mean?  Why exactly?

You don't want to make your kid a zombie?  You just wrote me that your kid only sleeps 2 hours a night, maybe being a zombie is just what he needs!

You don't want to change his personality?  This is my favorite.  Your kid is attacking you & others.  Your kid is injuring himself.  Your kid is miserable.  I think all these mean his personality needs A TON of changing!  Or he might end up in jail in a few years...or godforbid worse!

Maybe it's different with high functioning kids and/ or kids who are verbal.  Maybe if my kid could express himself and tell me what's bothering him it would be harder for me to consider medication...but I doubt it cuz medication has helped me.

I've written countless times about how I take the antidepressant Wellbutrin.  It's been almost 3 1/2 years now.  You can read about my story about antidepressants HERE.

So maybe that's it...Maybe because I've had success on antidepressant medication I'm more ok with giving it to my son.  I dunno.

All I know is in my humble opinion when your kid is absolutely miserable for most of his day and you can't figure out why, and you've ruled out most things medical, then I think it's time to try some drugs.

And not all drugs will work... And some might make things worse...but you gotta try something to make your kid's quality of life a little better.  That's our jobs as parents.

And am I worried about the long term effects?  No, I covered that in another blog post (READ) when I wrote.

"...I talk a lot on here about trying as much as possible to live in the moment, live in the here & now.  And I can somewhat control the here & now.  I can't really control the future....I will take a GREAT 12 month stretch now and deal with the possible consequences later, and I think if my son could tell us he would choose that as well..."

We took Kyle to a special needs dentist office this week.  Not just special needs kids, but special needs adults as well...which is always hard to see.

Kyle with all his meds in his system was bouncing off the walls.  He was having a rough morning...rare these days, but they still happen.  As he was loudly stimming and trying to run away, I looked around the room at all the special needs adults, some quite low functioning, and they were all behaving great.  My first thought?  "Great my Kyle is worse than all these people here"  My second thought?  "Maybe they're all behaving because they're all drugged up"  And then I thought "So what?  Going to the dentist is a traumatic experience for many, including me, maybe a little extra drug is appropriate!"  And I made a mental note to ask Kyle's dr whether we could try an extra 1/2 Klonopin before dentist appointments... and maybe haircuts!  :-)

Anyway, I'm rambling so I'm gonna end it there.  Now you know my opinions on this subject...

Peace Be With You...

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!!




Tuesday, April 23, 2013

Listen to the long, whirlwind, multi doctor appointment day we have ahead of us..

Tues 8:54am -- I'm sitting in the Starbucks down the street from the king's school.

He has a dentist appointment set for 9:30am. Then due to some breakthrough seizures over the weekend his neurologist wants to see him and our only choices were today at 11:30am or wait til May 21st.

So we've got a whirlwind day ahead of us.

I just drove him to school in my car and dropped him off at 8:10am and now I'm sitting in Starbucks enjoying breakfast #1.

Wifey will drive the minivan here and pick me up. We'll get the king from school at 9:15am to go to the dentist. So he'll have an hours worth of school in the morning.

9:30-10:15am hopefully an easy & fruitful trip to the Medicaid waiver dentist. NOT! We've got a bag of books & ipad packed for the waiting room. In the dentist chair I'll have to sit with him on my lap and hold his hands, shoes off, someone will hold his feet and wifey will hold up the hand mirror I just brought so he can look at himself which he loves and maybe voluntarily open his mouth.

After dentist if time permits we'll find a diner for breakfast #2 and hopefully enjoy watching his majesty chow down on some pancakes & bacon.

Then at 11:30am we sit in waiting room #2 and wait for Kyle's neurologist appointment where we talk about his seizures and she listens and then she'll tweak his meds and we'll be on our way. Bringing Kyle to that appointment is kinda pointless cuz unless he has a seizure right in front of her there's nothing she can learn by looking at him and unfortunately she can't ask him questions. But they gotta see the patient...thats the way things work. So he'll probably be in her examination room bouncing off the walls and getting popcorn & Cheerios everywhere while we talk it out.

There's a lot of new news with Kyle in the epilepsy / seizure front that I promise I'll detail in an upcoming post.

Hopefully we are out of her office and get the king back to school by 1pm so he can enjoy the first and last hours of his school day.

Wifey will drive me back to my car in the Starbucks parking lot and I will race into Manhattan and try to make a 2:30pm meeting that I need to be at.

Wifey will hang around til 2:10pm and pick up his majesty and then take him to his after school OT/ Swim session at 3pm.

After swim they'll get home around 4:15pm and I'll get home from work around 6:45pm.

Dinner, tv, bed.

I'm exhausted just writing all this down.

Whew!

Wish us luck.

Now let me go and finish breakfast #1. The wife will be here to pick me up any minute now.

Monday, April 22, 2013

What Special Needs Swimming At The Y Sounds Like :-)

My wife recorded this audio of "Special Needs Swimming" at our local Y yesterday afternoon.

At this time, there's probably about 20 special needs kids in the pool, ages 5-18, most with autism, some with other disabilities.

All the sounds you hear are happy sounds... I swear!

:-)



You can hear my son Kyle in there a little bit too... I can pick out his happy "eeeee" anywhere!

THE END!

:-)

092114
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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....

Saturday, April 20, 2013

It's Autism Awareness Month & I've Got Nothing To Say...

It's Autism Awareness Month and I've got writer's block and I've got nothing to say. All my other fellow autism mom & dad bloggers are writing beautiful posts or angry posts or informative posts...and I've got nothing.

Part of me feels like I'm letting you all down. That I'm being EXTREMELY lazy.

What have I been doing this month instead of blogging? Well work has been a bit busier and in my other "spare time" i've been watching "Homeland" and "Shameless" on Showtime On Demand or I've been playing Zynga No Limit Poker on my iPhone.

Yes Showtime & No Limit Poker has replaced blogging. I'm addicted to them!

And it's not that I don't have things to blog about. I've had 3 great posts in my head that I've been meaning to write for weeks...

Here's a taste of the 3 blog posts that have been in my head...

1) I want to write a post telling new autism moms & dads NOT to read my blog. A lot of new autism parents have been posting on my page lately saying things like "my kid was just officially diagnosed with autism yesterday and I just found your page today" or saying things like "I get all my autism info from you" You would think stuff like that would flatter me or you would think stuff like that would make me feel proud...but to be honest, hearing stuff like that, and reading stuff like that scares the shit out of me!!

2) I want to write a post about how I wish I could interact with my ASD kid the way his teachers, therapists, respite workers do. They are so calm with him and he feeds off their calmness. And it's mainly because they are not his parents...and they're not looking into the future when they're with him. They're just living in the moment. Basically I want to learn how to treat my kid like he's not my kid...and we'll both be better for it.

3) Around the 2 year anniversary of my Autism Daddy persona (April 16th!!) I wanted to write a blog post preparing you all for what is to come as the king hits 10 years old next month. As you all know nothing is "off limits" on my blog. I kinda consider myself the Howard Stern of autism parent bloggers. lol And the king is starting to discover his youknowwhat and play with it and his puberty years are approaching and I wanted to write a post warning you all / preparing you for the fact that NOTHING will be off limits! :-)

3 great topics that I think would make great blog posts, don't you?

But when I sit down to write them I decide to play poker instead.

And it's not like I don't have more of the day to day stuff to write about.

Kyle has been amazing behaviorally and his receptive language seems better the last few months... but he's been sleeping a lot due to an increase in one of antiseizure meds. And this week he's had a few breakthrough seizures so we'll probably need to adjust his meds again. And adjusting his meds will be scary cuz he's been having a LOVELY few months now so we don't want to lose the great behavior and the better receptive language but we'd like him to not be as sleepy and of course, we want no more seizures. So we have been dealing with that. And there's probably another 24hr EEG in our near future which I'm not looking forward to.

I've also been meaning to write about the INSANITY of his constant breath holding which had been going on for almost 3 years now...but now we feel like it's getting worse and and may be helping to trigger some of his seizures. He's been going to behavior therapy for a year and a half for this and they had a "protocol" that was helping a little bit but it stopped working around the Christmas holidays and now nothing is helping and sometimes the breath holding kinda gets in the way of his life cuz he's so concentrated on breath holding that he can't walk a straight line.

So there's another long blog post right there, but I haven't written it.

But the show "Shameless" has been great!

And then my aunt (my mom's older sis) passed away suddenly earlier this month so I've been dealing with that and then the Boston Marathon bombing happened which hit me especially hard as a marathon runner cuz I know first hand what an amazing joyous day Marathon Monday usually is in the Boston area.

So basically autism has kinda taken a back seat this month, ironically on Autism Awareness Month.

Autism has taken a backseat this month to work, Showtime, poker, seizures, breath holding, my aunt's death, and the Boston Marathon bombing.

So there you go. Forgive me for not blogging or posting on FB that much this month... Now you know all the reasons why.

So let me hurry and finish writing this post this so I can play a little poker while poking Kyle in the belly every 20 seconds so he exhales from holding his breath.

Thanks for listening. And let me know which one of the blog posts that have been floating around in my head I should write next.

Ciao!

:-)

Thursday, April 4, 2013

Famous Sofas From Great TV Shows


THE FOLLOWING IS A PARTNER POST....


FAMOUS SOFAS FROM GREAT TV SHOWS...

The sofa forms an integral part of any home and a large part of everyday life. So, it’s not surprising that it also has a starring role on the small screen too. There are loads of great TV shows set around the hub of the home that is the sofa. After all, that’s where so much of the action and conversation happens.

To celebrate the celebrity sofa, we’ve come up with a list of some of the most recognisable small screen sofas. See how many of these you know and try and think of any we might have missed.

Friends

OK, so this is not technically in someone’s home but the sofa in the Central Perk coffee house is the setting for so much of the witty dialogue that made the show so famous. Friends is the show that defines the 90s and is so popular it still runs virtually on a loop on one or other of the digital channels. The salmon pink/burnt orange (depending on the colour settings on your TV) sofa acts as the centrepiece around which so much of the show is based.

The Simpsons

Not just any old sofa, this cartoon couch is even the scene of the legendary Simpsons intro gag. At the start of each episode the principal characters run in and clamber on to the couch, each time with a different pay off. Whether it’s switched anatomy, a cultural reference or a dash of the surreal, the couch gag is

Wednesday, April 3, 2013

A Nice Little "Moment" From This Afternoon...


File this one under celebrating the little things...

The wife reported a nice "moment" with the king today.

It was after school.

The king was playing in his playroom.

The weather was nice out so wifey said "Kyle let's go in the backyard and jump on the trampoline & go on the swing."

And she proceeded to begin to get him dressed.

As she was putting his shoes on and grabbing his coat, he ran away from her, sat down in the corner nook in his playroom, and slammed his hand down as if to say "I don't want to go outside! I want to stay right here!"

It took the wife a second to comprehend that he was, in his own "terrible two's" kinda way, actually communicating with her.

But once it dawned on her she said, "Oh, ok buddy we don't have to go outside. Thanks for telling mommy what you want. Great communicating!"

And they stayed inside and he continued played in his nook.

That's a pretty big moment for his majesty because it was absolutely positively clear to wifey that he was reacting to the concept of putting his shoes & coat on.

He must've made the connection that shoes & coat mean outside and thought I want to stay here.

And he let her know his desires...loud & clear.

Doesn't sound like much for an almost 10 year old, but for Kyle it's kinda big...

A nice little Thursday afternoon "moment" in the ol' Autism Daddy household.

Tuesday, April 2, 2013

Happy Autism AWARENESS Day! Yes, that's right I said Awareness!










(originally written & published on April 2, 2013)


Today is World Autism Awareness Day.  But as usual, within our autism community people are having debates about whether it should be "awareness" or "acceptance" or "equality" day. 

And, as usual, within our autism community some people are shouting & fighting.

Perfect example, I posted an innocent picture on my Autism Daddy Facebook Page of some blue cookies my wife sent in for the teachers & students in my autistic son's class with the caption, "The wife made these blue cookies and sent them in to the king's school today to help celebrate youknowwhat day."




And this was one of the comments.


What's with all the "awareness"? With 1 in 50 numbers and crazy theories coming out (like old grandfathers, abused moms, too much tv, etc.), I think the "awareness" part is covered. Sorry, but what good are cookies at this point? Are the teachers unaware? Will this increase action to find the REAL cause? I'm stumped every year with this need for "awareness."


Now, my wife didn't do this to change the world…or to make the teachers more aware.  She did this cuz she likes to bake and she likes to celebrate and be a part of things. 

She dressed my son in red & made red cupcakes for Valentine's Day.
She dressed him in green and made green cookies for St Patty's Day (and we are not even Irish).
And today she dressed him in blue and made blue cookies for Autism Awareness Day.

And that's probably about all we will do to “celebrate” the day and/or to make people more “aware”.

But for the people that say the outside world should be "aware" by now.  You're wrong.  You're living in your autism bubble. 

To you and to me, it seems that autism is in the news EVERY FREAKING DAY.  But that's because we are seeking out that news. 

Admit it, you have a google news alert set to feed you all the autism news of the day.

Or most of your friends on FB are also in the autism trenches so you're FB newsfeed is filled with autism stories EVERY day.

Admit it you are obsessed with reading blogs written by autism moms & especially dads.  :-)

So, to you, it seems like the world is drowning in autism awareness.

But it's not true.  You're only reading about autism if you want to read about autism.

If you're a typical parent, and you watch the evening news every night, check out CNN.com a few times a week, and read your local newspaper every day you're probably not that aware of autism. 











Think about the types of & the frequency of autism stories that hit those sources on a weekly basis.

They are few and far between. 

And the types of autism stories that do make the mainstream media usually fall into 3 categories…

1) feel good stories about typical people being nice to autistic kids like this new one from ABC News, “Autistic Girl's 'BrokenCheeseburger' Story Goes Viral”


2) autistic kids doing great & surprising things like this old one from CBS.  (this one has been spread around the web for over 3 years now) “Autistic Teen's Hoop Dreams Come True”

3) As the person commented above, theories about causes or links to autism, like this one from a few weeks back, “AUTISM: UCLA study findsair pollution correlation” 

And I’m not against any of those types of news stories.  They are all valid and they all show a side of autism.  But seeing maybe 5-6 stories like this a month doesn’t make you “autism aware” in my mind. 

So I think having a day and a month where we try to be upfront with the rest of the world, and be even more present in the mainstream media is not a bad thing. 

Autism Awareness Day & Month is really not for us.  It’s not for us living in the autism trenches.

The Day & Month are for the rest of the world…to help them be more “aware”.

Having autism awareness day & month just forces the mainstream media to throw a few more autism stories on the air.  And hopefully one or two will be different, and not fall into the 3 categories above.  And hopefully one or two will get into the “1 in 50” number, make people more “aware” of the epidemic we have on our hands. 

Again, I know, I know, you’re thinking, “It’s freaking 1 in freaking 50!  How can they not be aware by now!”

Trust me, they are not.












And if I wasn’t an autism parent, I would not be aware.  I would not be setting a google news alert to feed me all autism news stories.  I wouldn’t be reading autism parent blogs.  If I was a typical parent, I’d be digesting the autism news that I happen to stumble across while I’m looking for the sports section of the paper.





I think if I was a "typical" dad and went into a family member's autism home (or had them over my home) I would be extremely concerned & compassionate & would bend over backwards to make them feel comfortable and make any accommodations to make things easier for them...but once they left, I'd probably be "out of sight out of mind" 

I'd get bogged down in my own problems & issues, which to the autism parents would seem absolutely minuscule.  This is what happens to most family & friends I think...because when they are living in their own "shit", whatever it may be...(my kid is failing spelling, my kid is 3 and not potty trained, my kid stutters a little) and it seems like a HUGE issue in their lives.

It IS a HUGE issue in their lives.

And their problems, as minuscule as they may be to us asd parents consumes all of their energy and brain power... and you are your situation are the furthest things from their minds...until they see you again... and see what your dealing with... and they think about how stressed they are over stupid stuff... and that's when they say "I don't know how you do it..."

Then they go home and forget all about and go back to their HUGE minuscule problems...

But that's just life.  There's not much we can do about that.

Maybe as autism parents, we do expect way too much from the outside world.   They are bogged down with what they feel are their own HUGE problems... and don't think about autism until they see a news story about autism... or in April when their Facebook newsfeeds get inundated with autism awareness month crap...  :-)  Then they say "how do they do it" and then they move on with their huge problems...

And again... that's just life.  There's not much we can do about that.



And I stand by what I wrote. 

There really is not much we can do about that.  That’s just life.

But for one month a year, and especially on one day a year, we can try to force some awareness down the typical world’s throats.  So they SLOWLY become more & more “aware” of the impending epidemic of autistic kids growing up and leaving the school system, and having nothing to do and nowhere to go. (that’s a whole other blog post for a whole ‘nother day)

Now I know we shouldn’t have to force it down their throats, but we do.  So for one month a year, let’s try to get all the stories out there.  The high functioning stories & the low functioning stories.   The medical stories & the insurance stories.  The political stories.  The poop stories.  The inspirational stories.  The good, the bad, and the ugly.  Let’s get it all out there…and see what sticks and what resonates with the mainstream media and the masses.

That’s all I got.

So Happy Autism Awareness Day!

Now excuse me while I enjoy one of my wife’s delicious blue cookies that I stole from the Tupperware before delivering to my son’s school…

J

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-- 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!!

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