Sunday, November 16, 2014

This Is What Epilepsy Looks Like... Not Scary, More Sad

The king's been having a bit more seizure activity the past few days. He had maybe 7-8 of them that we saw yesterday. 

People often wonder how we can live like that...  

In think it's mainly because when many people think of seizures they're thinking of the grand mal / tonic-clonic seizures you see in the movies where the person loses consciousness and convulses on the floor for a few minutes foaming at the mouth.  

Thankfully Kyle has never had one of those. At night in his sleep he has had a few scary looking 1-2 minute seizures where his eyes roll back and he mildly convulses. These are called "complex partial" seizures and thankfully they are rare for him. 

What he has more frequently, a few a day these days, are short, 10-20 seconds max incidents that sometimes just look like he's drunk with a silly smile on his face. They are short and mild, but they make him sleepy and therefore affect his quality of life...

Here's what a typical Saturday in the day in the life of a an epileptic child named Kyle looks like. 

This was yesterday. 

Saturday 8:42am
Still sleeping....in our bed, of course....  :)

Woke him up at 9:30am so he could make his swim & music classes on time....

He had one or two small, short seizures before we left the house. 

Then after music therapy and a quick trip to costco (where he sat in the cart) we drove home.  He had a 20 second seizure on the drive home and...

Saturday 2:58pm...
Sleeping again... 

This nap lasted 90 minutes...  He got up around 4:30pm and was himself for the rest of the afternoon / evening... But had a few more seizures in the evening and before we could get his dinner in him...

Saturday 6:28pm
Another 25 minute power nap...

He was up after 7...  And had  a small dinner... 

His appetite is a major issue these days. He's lost 7 pounds since the summer. 

He was up and fine for the rest of the evening. He threatened to nap a few other times, but then was up as a pup until close to 11pm and after all that napping we have to decide whether to give him melatonin to get him to sleep at nighttime.  

He went to bed after 11, without mel last night. 

And then throughout the night we've got a seizure camera / monitor on him that records all his movement throughout the night and alarms us if the movement goes over a certain length of time. 

It usually triggers about 2-3 alarms a night which are thankfully usually false alarms...

Just him flopping around or sitting up and readjusting during the night...

Like this...

Sunday 2:16am

Then somewhere around 5am eachnight lately he comes in our room and climbs into our bed and finishes his slumber. 

That's where he is now. It's Sunday 9:21am. Wifey is downstairs cleaning as we are having family over for brunch at 10:30am to celebrate her parents anniversary. And he's lying next to me in our bed sleeping as I write this on my iPhone. 



That's it. I just wanted to quickly share what a day in the life of epilepsy looks like around here. 

It's not as scary as you might think...The seizures don't look as scary as you might imagine... And each seizure doesn't warrant a trip to the hospital or a call to a doctor. 

It's not scary...but it's just kinda sad...

An 11 year old sleeping 14+ hours a day is kinda sad... 

And it's a vicious cycle cuz yes some of the seizures make him sleepy, but some of the seizure meds make him sleepy too...

But we're working on it... And making sure he's as active and happy during his waking hours...

Time to go. He's finally waking up!

Over and out. 

THE END!




Wednesday, November 12, 2014

The King Has An MRI Today

The king has an MRI today. 

Wed 8:43am -- The king has an MRI today.  We're at the hospital right now. It's not because of anything serious (we hope).  It's been scheduled for a few weeks. 

It has to do with his hypothyroidism and his advanced / precocious puberty. (Two things I don't write about much on the FB page / blog). 

They want to make sure that he doesn't have a pituitary issue. 

The king's done a few MRIs in the past...

But because of his autism and epilepsy they are a lot more complicated than the typical kid. 

They need to take about 45 minutes worth of "pictures". 

Because he can't stay still for more than 2 minutes he has to go under general anesthesia to get the MRI. 

But because he has the VNS device implanted for his seizures and that's based on metals and magnets it's a bit more complicated. 

There's only a few hospitals that do MRIs on VNS patients. And even fewer that do MRIs on VNS patients that can't talk and tell them if something feels weird. 

So we are at a big hospital in Manhattan. 

And they turn off the VNS device during the MRI and they use a special MRI machine. 

I just left him. I was in the room with him when the administered the first dose of anesthesia via a mask over his mouth.

I've always played this part during previous anesthesia times since wifey doesn't want to see it...

He always surprises us and does great in hospital settings! 

Today, so far he's done great. He's strong and fought the mask a bit, and held his breath a bit...but I recited one of his fav books "chicka chicka boom boom" over and over and that calmed him down until he fell into an immediate deep sleep in my arms. 

Now we have to wait an hour until they call us in. 

While he's in recovery, but still asleep they are gonna bring an xray machine up and get a pic of one of his wrists to get a bone age test done to see how advanced his puberty really is. 

We've been told he's in stage 4 puberty...4 out of 5 stages. He's 11 but docs have estimated that he's got the development of a 14-15 year old. 

Many typical kids take meds to slow the puberty down. 

But if the results of the MRI show & X-ray no scary reason for his advanced puberty we are just gonna leave it alone. 

When asked what's the worst that can happen, docs talk about emotional problems with kids going thru puberty before their peers... Kyle wouldn't have that problem. 

The only other problem is that he might end up being short. When you go thru puberty quickly you stop growing earlier. 

Our thoughts?

He's already 5' 1" maybe a kid like Kyle being short adult isn't the worst thing in the world...especially for me & wifey as he gets older and stronger. 

Anyway we are in the waiting room now waiting for the call that he is done. 

Please send positive vibes. 

Thanks,

AD

Monday, November 10, 2014

Autism Community: It's Ok To Disagree, But Play Nice





So I wrote 2 somewhat controversial posts on Friday. One on the Jillian Mccabe case that took me days to write. And one on the Jerry Seinfeld autism story that literally took me 15 minutes to write.

And, of course, it was the Seinfeld one that went viral and started a war of sorts between the high functioning community & the low functioning community and that was never, ever my intent.

I know many parents with high functioning kids & aspie kids. I know their struggles are real. And I've seen first hand how extremely hard it can be on a daily basis.  And I've witnessed …how mean people can be out in public when a verbal kid who seems so close to typical has a complete meltdown.   



Anyway, with all of that being said, the point of my Seinfeld post is that…. I'm human... and I've written before that sometimes it's hard for me to always have the lowest functioning kid in any given setting. I stopped going to an autism dad's support group years ago because I couldn't relate to many of their problems & issues.

So, I'm human and I write about what's going on in my brain and when Jerry diagnosed himself i wrote 

Seinfeld saying that makes me feel even less connected to those on the mildest end of the spectrum. 
How can Jerry Seinfeld have the same "disorder" as my son?  The aspies & people on the highest end of the spectrum must be living on a complete different planet from my son!  How can these be the same condition?  Do they share any of the same traits?!

That's what was going thru my brain when I first read saw the Seinfeld interview.  

Anyway, many people agreed with many, and many others vehemently disagreed with me.

And that is fine with me...

But I think a HUGE problem in our autism community is that nobody is allowed to disagree with each other.

And many people think that because of my writing style that I feel this way too...

That it's my way or the highway.

But that is so not how I feel.

I am totally fine with people disagreeing with me on all sorts of different issues.

And my positions have evolved over the years and are always evolving. I read a few things I wrote on the blog back in 2011 and think to myself I don't feel that way at all anymore.

All this to say that I write my opinion or what's on my mind at that very moment. And I stand by what I write, but sometimes the future me might change his views.

So, I am fine with people disagreeing with me.

And I am fine with other bloggers disagreeing with me. And you Autism Daddy fans need to be fine with it too.

You don't need to defend my so voraciously on other FB pages and blogs.

People should be allowed to disagree with each other, especially over something as silly as the Seinfeld story.

Some of my favorite bloggers have disagreed with me on the Seinfeld issue and the Jillian McCabe story and many of you have sent me links to their posts almost trying to drag us into some blog war with each other.

And I will not bite.

Why, you ask?

First and foremost because as long as their not being overly cruel I'm totally fine with harsh criticism.

And secondly, who has the time to get in a war over this stuff?  There's not enough hours in the day...

Let people disagree. If they have different views from me or you just state your opinion nicely and move on...

This new political world we live in where everything is either black or white and everybody has to be completely on one side of every issue is BULLSHIT.

It's bullshit in politics and it's bullshit in autism.

The whole time I've had my AD FB page I've probably banned less than a dozen people. Mainly people who overly promoted a product or wrote something extremely offensive.

However, some of my AD fan-base is getting a reputation in the autism page/ blogging community for being mean and belligerent and for trying to start up trouble.

And I won't stand for it.

So, moving forward, if I see any of you guys stirring up trouble on other FB pages and defending ol' AD too meanly I may have to ban you.

So don't do it....or you may be banned.

Play nice.

And if somebody posts a mean comment on my AD FB page or another page, take the high road and be nice. Or if it's extremely mean ignore them cuz it's probably a troll and trolls go away if you ignore them.

That's it. That's all I've got to say

The takeaway to all of this is we can all have differing opinions, but be respectful of others.

Play Nice.

And to show you how fine with it I am...here are some of my favorite blogs/FB pages that wrote posts this past weekend offering differing opinions than me on the Jillian McCabe and Seinfeld stories.  A few AD followers emailed me some of these stories thinking I'd be offended, but every one was just a different opinion…

Go check them out and like their pages cuz even though we disagree on these issues we agree on many other

THE END


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Go

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Friday, November 7, 2014

Seinfeld:"I'm Autistic" Yada yada , you're not helping...

You're autistic?!  Yada, Yada, you're not helping the autism community...


Jerry Seinfeld's autism revelation to NBC's Brian Williams
“I think, on a very drawn out scale, I’m on the spectrum,” Seinfeld told the NBC Nightly News host. He then elaborated about what exactly he has noticed that indicates to him he may be on the autism spectrum. “[I'm] never paying attention to the right things,” Seinfeld said. “Basic social engagement is really a struggle. I’m very literal. When people talk to me and use expressions, I don’t know what they’re saying.” 
Seinfeld went on to say that he doesn’t view this self-diagnosis as dysfunctional. “I just think of it as an alternate mindset,” he said.

Let me start out by saying that the wife and I are HUGE Seinfeld fans!  We know the show like the back of our hands and we make Seinfeld references in our lives every day...

"Yada yada ", "Get out!", and the lesser know "vegetable lasagna" are 3 regular expressions in our daily vernacular in our home.

We love the show.  We love him as a comedian.  And as a person.  We just think his outlook on life is spot on... and his latest autism revelation will NOT lose me as a huge huge fan.

But, yada, yada, yada... with all that being said...  I am not thrilled about Jerry's autism self diagnosis.  I think it's stuff like this that puts an even bigger divide between the low functioning community & the high functioning community, between the parents of severe kids, and the parents of aspie kids...

Especially that last line...

Seinfeld went on to say that he doesn’t view this self-diagnosis as dysfunctional. “I just think of it as an alternate mindset,” he said.


That gets into the debate whether autism is a disorder or just a different way of thinking.  And y'all already know I feel about that.  My son's autism is a disorder.  It prevents him from doing so much stuff that his typical peers do.  yep, I compared my son to a typical kid, you got a problem with that?
:-)

And to have such a HUGE celebrity that we all know so well, for so long, just throw his hat into the ring and say he's autistic, in my mind it's almost like he's saying something to the effect of, yep, I'm autistic too, and I've lived an amazing life up to this point, so it's not a big deal...

To me it just diminishes the type of autism that my son has... and the struggles that my son has due to his autism.  Seinfeld saying that makes me feel even less connected to those on the mildest end of the spectrum.

How can Jerry Seinfeld have the same "disorder" as my son?  The aspies & people on the highest end of the spectrum must be living on a complete different planet from my son!  How can these be the same condition?  Do they share any of the same traits?!

And Jerry should know better.  The one time we saw him do stand-up was at an Autism Speaks benefit show in NYC.  He's done a lot of charity work for the autism community.  He's seen the kind of debilitating autism that I and many others are dealing with...

Jerry, what good does it do to add your name to the list?  How does that help you... or us in the autism community?

I've written this in a previous blog post, but I think it's fitting in this setting...

"...lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. They’re just a little quirky like the Asperger’s rocker on American idol. I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.
I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..."

And now we can add the newest poster child for quirky fun loving autism, Mr. Jerry Seinfeld.

Thanks a lot Jerry!  Not!

Now "Get Out!!"
 


THE END...

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My Thoughts On Jillian McCabe & Kelli Stapleton... I Want To Feel It All!

I posted the latest tragic autism story (Mom Accused of Throwing Autistic Son Off Oregon Bridge) on my FB page the other day and it got a ton of comments…  

Many people calling the mom a despicable human being and wanting to hang her, some people feeling compassion for the mom and noting how she was begging for help and had the weight of the world on her shoulders, and others hoping that this would shine a light on mental illness and/or the lack of services for autism families, especially as their kids get older.

And I read all these comments and realized that I have never written a post with my thoughts and views on these tragedies.  I looked back in my unfinished blog posts and saw that I started writing a blog post about this back in September 2013 when Kelli Stapleton attempted to kill her autistic daughter Isabelle and then I picked it up again in April of this year when Angie Robinson killed her autistic son Robert and herself , and now it’s November and it’s happened again…

So here are some of my thoughts…


I’m Allowed To Feel Compassion For The Parents, That Doesn’t Mean I Condone Their Actions…
I think these parents who take the lives of their autistic children are despicable human beings, and deserve to be put away for a long time… and at the same time I feel sorry for them, and I feel compassion for them… And I think that should be allowed.

The same way that I feel that I can hate my son’s autism and yet still love my son, I feel that on one hand I can hate these people who kill their children and want them to be severely punished and yet on the other hand I’m allowed to feel sorry for them and feel compassion towards them, and wonder how it ever got that far, and if there was anything that could have been done to prevent these tragic acts…

In my opinion, it’s not one or the other…  

I’m not religious at all, but isn't having compassion & forgiveness for a sinner the hallmark of most religions?  Punish them, and yet feel compassion for them.  Feeling compassion towards someone who did something heinous & despicable doesn't mean you condone their actions. 



Mental Illness is a Serious Issue
I’ll say straight out loud… again… that I, of course, don’t condone what this horrible mother did.  She MURDERED her child.   It’s atrocious.

And yes, she had to be seriously mentally ill to kill her son…

In fact, news reports are now saying that Jillian McCabe

(from NBC News) had been "hearing voices" and was supposed to see a doctor to adjust her medication the next day” 
Relatives say she had been suffering from mental illness for more than two years and snapped after a series of challenges: caring for a severely autistic, non-verbal child; her husband's life-threatening illness; and the death of her father. 
"We learned just yesterday that Monday morning Jillian expressed to her counselor that she was hearing voices again," Andrew McCabe said. "The counselor suggested that her medication needed adjusting and set an appointment with a doctor, for the next day."
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But her relatives say that while she was overwhelmed and stressed out by her situation, the real problems began after her husband, Matt, fell ill with a mass on his brain stem that landed him in intensive care and left him with a form of multiple sclerosis. 
The day before he was supposed to come from the hospital, McCabe's father died — and she went into a downward spiral, the aunt said.

She snapped.

What made her snap on this one particular day? … What made her "snap rate" (I just made up that term) higher on this day?

Who knows if maybe one other positive thing had happened to her that day, none of this would've happened.

Again, I don’t condone her actions, but I sympathize with her struggles and with her mental illness.

And I believe that she should go away for a long time, and be punished for her despicable actions…  but maybe she should serve her punishment in a mental institution instead of a prison?

Mental illness is not some joke.

Jillian was trying to get help for her mental problems, but with the way we make fun of and gawk at mental illness in this country (see Mayor Rob Ford & actress Amanda Bynes) how many people are afraid and embarrassed to get the help they need?




Severe Autism Is A Serious Issue too…
Now everything I'm about to write is in NO WAY condoning what these moms did, but I believe what I'm about to write belongs in this blog post...

Autism parents are very often stressed out.  Having a kid with autism is really hard and can really suck sometimes.  If you're kid is severely affected by autism your day to day stress levels will be even worse.  If your kid is self injurious or injures others your stress levels can be thru the roof.

I can't imagine what your stress levels would be like if your teenage severely autistic kid has a history of severely injuring you (and putting you in the hospital a few times) and outweighs you by 30 pounds (like Kelli Stapleton's & Angie Robinson's kids did).

All this to say that autism parenting can be a very stressful business.  And because of that, the same way that the divorce rate is higher among autism parents,  I can bet that the "snap rate" is higher among autism parents than among the general public...

But very often autsim parents put on a brave face and put our best foot forward, and present the sunshine & rainbows version of themselves to the world, especially to the Facebook world.

And when they do express how hard things are they're made to feel like they should stop complaining and when asd parents say "autism sucks" they're made to feel like they don't love their kids...

So they just bite their lips and keep it all in, and smile for the outside world, and no one knows the stress  (and sometimes violence) many autism parents are dealing with on a daily basis...

So I guess what I'm trying to say is that autism parents should be allowed to show the outside world how hard it all is without being made to feel like bad parents who don't love their kids.  And the outside world needs to see that reality more often to better understand what some autism parents are dealing with.

Maybe that would lower the "snap rate" a little?



I've gone off on way too many tangents.  It's time for me to bring this baby home.

My thing about all this is that I want to have my cake and eat it too...


-- I want to put these moms away forever and lock away the key... and yet I want to be allowed to feel compassion for them...

-- I want to say that Jillian did a horrible, disgusting, despicable thing to her beautiful son London (his pictures haunt my dreams) and deserves to be punished, and yet I hope this despicable act does shine a light on the issue of mental illness in this country...

-- I want to say that what Angie did to her son Robert and what Kelli tried to do to her daughter Isabelle were cowardly & horrific acts, and that both moms should have done everything in their power to avoid getting to that place (kill themselves, drop their kids off to social services, etc) and yet I want the world to hear more about their severe autism stories, and hear about their hardships and the violence they endured.


I want to have my cake and eat it too!  I want to feel it all!  Anger & compassion...

Does that make me a monster?








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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!!


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