Thursday, April 14, 2016

I Don't Want To Cure My Son's Autism, But Everything Else That Comes With It




Over four years back, when I was a young blogger I wrote a post called To The Autism Parents That Say "I Wouldn't Change My Kid For The World", I Say Bulls--t!! where I comedically railed against parents that use that phrase.  

In that post I wrote:

"I wouldn't change him for the world."

Come on, really?!  Your kid sleeps less than 2 hours a night because of his autism.  You wouldn't want to change that?!  Your kid doesn't talk because of his autism.  You wouldn't want to change that?! Your kid bangs his head against the window because of the big A.  You wouldn't want to change that?!  Your kid smears his feces against the walls.  You wouldn't want to change that?!  Your kid recites the same phrase from Dora The Explorer all day long.  You wouldn't want to change that?!....
....Do parents of kids with cancer or diabetes say that?  No, of course not those are life threatening diseases.  Do parents of blind or deaf kids say that?  I'd be curious.  Do kids with down syndrome or cerebral palsy say that?  I don't know, but I doubt it.  
So why are all the autism parents throwing that phrase around?  Why do we feel like we have to be ok with it....  
....Then why did you try the GFCF diet?  Why did you try neurofeedback or vitamin supplements?  Why are you fighting for more ABA therapy? 
You know why?  Because you want to change him.  You want him to progress.  You want him to be more typical....

So I wrote that post in January of 2012, and for the next few years I would re-post it every 3-4 months or so because it is something that I felt strongly about...

And every time I would repost it, I would always take a lot of heat from the high functioning and Asperger's community.  They would accuse me of being a horrible parent because they would say that I was trying to cure my son's autism.  And they would accuse me of practicing albeism (definition:  discrimination in favor of able-bodied people).
I have stopped re-posting as of late.  Mainly because I've achieved a bit of a higher profile the past year or so, and I don't think it's necessary to fan the flames as much.  I wrote that as a young, unknown blogger and as I read it now with the word bullsh-t in it, I can see how it's written in a reactionary, seat of your pants kinda way that some could take offense to.

So why am I bringing all this up again?

Well because one of the more rational arguments I get from people on this topic is basically the idea that "you don't want to really cure the autism.  It's the comorbid* conditions that really get in your sons way."
*In medicine, comorbidity is the presence of one or more additional disorders (or diseases) co-occurring with a primary disease or disorder; or the effect of such additional disorders or diseases. 
And I kinda touched on my opinion of this way back in 2012 when I wrote a follow up post to that original controversial post.  In that post I wrote:
Ok, so for those who've said getting rid of his autism is changing his personality and the way his brain works. To those folks I say, "I honestly don't know how his brain works. There are so many debilitating stims and habits that get in the way. So maybe you're right, maybe behind all the stims and add/ ADHD behaviors theres a beautiful unique autistic mind. So if you want to talk semantics maybe i don't want to get rid of / cure / change my sons autism, maybe I want to get rid of the tons of things that get in the way of him making any significant progress. But in my sons situation that's everything, the stims and behaviors and autism are all intertwined.
But this idea of autism being not that big a deal, and it's the comorbid conditions that get in my son's way keeps coming up in comments on my page & blog.


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Most recently I wrote a post called Why Autism SuperMoms* Make Me Feel SuperBad  where I talked about my frustration when I hear stories about mom's who singlehandedly brought their asd kids from one functioning level to another.  And the * in the title was explained later in the post where I said that these miracle stories like Carly Fleischman & Ido Kedar might need a warning on them saying "*results not typical"

And in the comments of that post a woman named Stacey wrote:
People need to realize you do not have an typical autistic child. I HAVE A TYPICAL AUTISTIC CHILD. He was moderately autistic and language delayed, and through early intervention, years and years of therapy, dietary intervention and an above average elementary school in our district, yes, I pulled him from special ed to mainstream, now almost un-detectable. Good for me. However, unlike The King, my child, Carly Fleishmann, Ido, your friend's sister's daughter, etc etc, do not have the additional burden of intellectual disability. Autism is Autism. intellectual disability is what it is. It is very likely and unfortunate that The King has both of these compounded by his epilepsy. Do NOT ever feel bad. You did everything you humanly could, just like I did, just like they did, however, as I said, our autistic children do NOT have a compromised intellect. They responded differently to the interventions we've all tried. 

So after reading Stacey's comment about her kid making lots of progress.  And her notion that he is a typical autistic child and thinking about all the other comments over the years about how it's not the autism that's getting in my son's way, it's not the autism that's making my son do this, it's not the autism that's making him do that, it got me thinking...

Then what the heck is the autism exactly?

Now for the rest of this post, I'm gonna pull quotes from the wikipedia page for Conditions comorbid to autism spectrum   I know wiki's not always the best source, but I checked the sources that wiki is pulling from and they are all pretty stellar & reputable.  Here's how autism is defined
Autism spectrum disorders (ASD), including Asperger syndrome, are developmental disorders that begin in early childhood, persist throughout adulthood, and affect three crucial areas of development: communication, social interaction and restricted patterns of behavior.
Ok, so Stacey's comment above is that if my son just had autism, then with all the therapy he had over the years and all the hard work that he & we put in he should have come a long way by now since autism only affects communication, social interaction, and certain behaviors.  Unfortunately he hasn't come a long way, and I guess that's because he's got several of the comorbid conditions that go along with autism.


Here's the list of the comorbid conditions that go along with autism from that wiki page.  I'm going to highlight in blue and include some stats on the ones that we know that the king has on top of his good ol' run of the mill autism...


1) Anxiety 
The prevalence of anxiety disorders in children with ASD has been reported to be anywhere between 11% and 84%

2) Attention-deficit hyperactivity disorder

3) Bipolar disorder
4) Bowel disease
5) Depression
6) Developmental coordination disorder

7) Epilepsy  
One in four autistic children develops seizures, often starting either in early childhood or adolescence

8) Fragile X syndrome

9) Intellectual disability 
The fraction of autistic individuals who also meet criteria for intellectual disability has been reported as anywhere from 25% to 70%, a wide variation illustrating the difficulty of assessing autistic intelligence

10) Neuroinflammation and immune disorders
11) Nonverbal learning disorder

12) Obsessive-compulsive disorder 
About 30% of individuals with autism spectrum disorders also have OCD

13) Tourette syndrome

14) Sensory problems 
Unusual responses to sensory stimuli are more common and prominent in individuals with autism, although there is no good evidence that sensory symptoms differentiate autism from other developmental disorders.  Sensory processing disorder is comorbid with ASD, with comorbidity rates of 42–88%

15) Tuberous sclerosis

16) Sleep disorders 
Sleep disorders are commonly reported by parents of individuals with ASDs, including late sleep onset, early morning awakening, and poor sleep maintenance;sleep disturbances are present in 53–78% of individuals with ASD. Unlike general pediatric insomnia, which has its roots in behavior, sleep disorders in individuals with ASD are comorbid with other neurobiological, medical, and psychiatric issues.  If not addressed, severe sleep disorders can exacerbate ASD behaviors such as self-injury


So after reading all that, then maybe autism isn't the bad guy.  Maybe his autism isn't causing any of the king's major problems.

-- So maybe it's not the autism that's making him hold his breath so much, maybe it's his anxiety.

-- So the autism isn't bringing on the seizures, that's his epilepsy of course.

-- So the reason why he's still non-verbal and considered low functioning despite tons of the best therapies isn't because he's autistic.  It's because he has an intellectual disability on top of his autism.

-- So when he used to open & close the doors all the time that wasn't an autistic behavior, that was an OCD behavior.

-- So the fact that he doesn't feel intense pain but brushing his teeth or getting his hair cut seems to be intensely painful to him isn't because he has autism, it's because he also has sensory problems.

-- So the reason that he used to only need 3 hours of sleep a night (before we discovered the magic of melatonin :-) isn't because of his autism.  It's because he also has a sleep disorder.

Well then what the heck is autism again?

"Autism is a developmental disorder that affects three crucial areas of development: communication, social interaction and restricted patterns of behavior."

Ok, but then so how is my son affected by autism?  I'm not exactly sure.  It seems like the other stuff, the comorbid conditions seem to affect his life more than the autism

So maybe I'm not looking to cure his autism at all.  Maybe I'm not a curist!  Maybe I just want to cure all the other comorbid conditions that are on top of his autism.  Maybe if we can cure all of those, we'd be left with a 12 year old genius who is thrilled and happy that he has an amazing, unique, autistic mind.  

And I don't think anybody would be upset with me and call me a horrible person if I said I wanted to cure my son's intellectual disability, or his epilepsy, or his anxiety, or his ADHD.  It's only when you say you want to cure your son's autism that people get upset.

So maybe I don't want to cure his autism anymore... but let's be honest, it does seem like the autism is the connecting factor between my son and all these other conditions.   And those stats are rough.  25% of asd kids develop epilepsy.  30% of asd kids also have OCD.  50-75% of asd kids have sleep issues.

So it really is hard to be thrilled that he's autistic.

Because I think it's safe to say that odds are, if he didn't have autism, he wouldn't have epilepsy.

Odds are, if he didn't have autism, he wouldn't have an intellectual disability.

Or anxiety, or ADHD, or sleep problems...

So it's hard for me to not to want to cure the autism... if curing the autism made all those other conditions disappear.

But I'll say it loud and clear.  Maybe I don't want to cure my kid's autism!

I just wish he was like Stacey's kid... and just had easy, breezy run of the mill autism where, like her son, with hours and hours of intense therapy my son could make some significant gains.

I think I'll end it there.  I'm not entirely sure why I wrote this post today.  Stacey wrote her comment back on March 28th but I've been hearing her type of comment for a few years now.  I think the combination of Stacey's comment on March 28th, combined with this being autism awareness month so I'm reading and hearing a lot more miracle stories, combined with me doing a lot of public speaking this month and talking about my son and his type of autism all brought this post to the forefront.  

And let me just say once again that I guess I've changed my stance from back in 2012, and now I don't want to cure my son's autism, but boy do I wish he didn't have the type of autism that also comes with epilepsy, OCD, ADHD, sensory issues, etc, you know?

Can anybody fault me or give me flack for saying that?  I'm sure they can and they will, but that's my story and I'm sticking to it!  :-)

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....Love you all! Thanks!!

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Thursday, March 31, 2016

Sesame Street & Autism: 13 New Videos & an Emmy Nomination!!




So as you all know by now, I work at Sesame Street.  Last September I wrote a post called My Name is Frank. I Work at Sesame Street. I am "Autism Daddy".  

And in that post I explained that after 4 1/2 years of writing my Autism Daddy blog anonymously I was giving up my anonymity because I was working on Sesame's autism initiative and I was proud of that work and wanted you all to know.

And then on October 21, 2015, the day Sesame's autism initiative launched I wrote a post called Sesame Street & Autism -My 2 Worlds Collide in an "Amazing" Way as a way to introduce you all to the resources that were part of the initiative.

And as you all know Sesame's autism initiative went crazy viral and dominated the autism social media world for a few weeks back in October.  

Well now it's 5 months later, the original content has over 1 million views, and on the eve of Autism Awareness Month we are launching phase two of our #SeeAmazing autism initiative! 

And I'm here today to walk you thru the 13 new video segments that you'll find on the site www.sesamestreet.org/autism 


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JULIA ANIMATION
Well first off is the video that I'm sure is going to get the most attention.  Last October, Sesame introduced you to our autism muppet Julia in the autism storybook "We're Amazing 1,2,3".

Today we want to introduce you to our new animation featuring Julia!




And the best part about that animation is that the voice of Julia is a little girl with autism!


Now while that video is guaranteed to get a ton of attention over the past few weeks, as it should, there are a bunch of other videos that deserve some autism love too!  :-)


BEHIND THE SCENES
Last October we introduced you to an animation called "Benny's Story" produced by the autistic students at the school Exceptional Minds.

Today I want to introduce you to a Behind The Scenes segment that shows the making of Benny's Story and all the young adults with autism who hand a hand in creating it.






Next I want to re-introduce you to the kids with autism and their families that we featured in our films back in October.


NASAIAH
Last October, we introduced you to one film featuring Nasaiah & Abby Cadabby and one film featuring Nasaiah's mom.

Today on the Sesame Street and Autism website you'll find 3 additional short films that show more from Nasaiah and muppet Abby's amazing playdate.  Here's my favorite of the three, but I encourage you to check out all three.





YESENIA
Back in October we introduced you to a film about Yesenia & her sisters, as well as a film featuring their dad Ricky.

Today, we have two new videos with their amazing family!  Here's one of the two!





THOMAS
Last October we introduced you to a film about a boy named Thomas with autism.

Today we are launching two new videos featuring Thomas's family.  Here's one featuring his mom Cindy.






4 MONTAGES FEATURING 30+ ASD KIDS!
OK, so I've got 4 more videos that I want to quickly introduce you to, and these are the ones that I am most excited about!

The reason that I'm so excited about these videos is that while I'm happy to introduce to more films featuring our families from October I'm thrilled about these next four because they feature a bunch of new faces

A few months back we asked some parents of ASD kids to record their kids on their smartphones answering specific questions that we had.  And then we asked them to send the videos to us.

And with those videos we were able to create 4 new segments / montages featuring over 30 kids from all over the spectrum.

"What Makes You Amazing?", "What's Your Favorite Food?"

And the two below:

"What Do You Want Kids To Know About Autism?"


"What Are Your Favorite Things?"

I'm really proud of these 4 montages, especially the fact that we were able to get such a wide range of ages, races, and functioning levels.  And I'm thrilled that these videos show some of unique ways that our kids communicate!


SO THAT'S ALL 13, USE #SEEAMAZING
So that's it!  Those are the 13 new autism videos that Sesame has to share with you and we encourage you to share them all like crazy throughout the month of April and use #seeamazing

Also please continue to share your own personal autism stories about your kids on social media and use #seeamazing

That's about all I've got to say...  I think I'll end it there.

Oops I almost forgot!  


EMMY NOMINATION!
We also got the good news this week that Sesame Street and Autism: See Amazing in All Children was nominated for a Daytime Emmy Award in the category of Outstanding Interactive Media, Original Daytime Program or Series!!

And a bunch of our producers and directors and filmmakers are on our list as those eligible for a trophy if we win...including me!



This is my first Emmy nomination during my time at Sesame Street!

Autism Daddy on the red carpet in Los Angeles??  Maybe!  It's on April 29th.  We shall see!  Stay tuned! 


TIME TO END THIS POST
Ok, now I think I'll end this post.  

But just be forewarned that I'm extremely proud of all of these videos so I'll probably be posting tons of stuff about Sesame and our autism initiative over the next few days.  

Please forgive me.

I promise I'll be back to posting my usual rants and goofy pics of the king very soon!

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....Love you all! Thanks!!

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Monday, March 28, 2016

Why Autism SuperMoms* Make Me Feel SuperBad






I've been hearing about autism super moms lately. 

Moms who single-handedly thru hard work and determination dragged their autistic kid from point A to point B

Whether that be from nonverbal to verbal

Or from low functioning to high functioning 

Or from a special class to a mainstream class. 

Or from high functioning to declassified. 

These moms are out there. And they feel proud of their accomplishments, as they should be!

And some of them write books about their kids, as they should!

And go on the public speaking circuit, as they should!. 

And they inspire many young autism parents, as they should! 

However, for me, for a dad of a 12 year old still severe, still non verbal, still in the all autism classroom son, these super moms sometimes make me feel like crap. 

They make me feel like I didn't do enough, that I'm not doing enough. 

And I know I'm not the only one that feels this way.

He's a couple of examples from the recent past. 

Example #1
I went out to lunch with an old friend from HS who I don't get to see very often.   He says that he says that he reads my blog often.  

And his sister has a daughter with autism named Beth and he was saying things like "My sister is amazing with her. She pushed her.  When Beth was younger she couldn't talk and she would hit herself. But because of of my sister's hard work and working with her and advocating for her she's now 9 years old and talking and in a regular classroom."

And I'm sitting there thinking "why is he telling me this?  Doesn't he know it's making me feel like crap?"

Why does it make me feel like crap you ask?

It's not because this kid progressed so much. I'm thrilled for his niece and their family!

It makes me feel like crap because it makes it seem like without the hard work of this mom this kid would've ended up just like mine. 

So maybe we didn't do enough.  Maybe if we pushed our son harder when he was younger or advocated for him better to get that 5th speech session per week or that extra hour of ABA per week he'd be so much better off right now. 

Now if my friend said, "yeah she really responded well to ABA."  Or "she went on the GFCF diet and it made a huge difference." I would be fine with that. 

Jealous maybe, because we tried ABA & the diet and they didn't work for my kid...but I'd be fine with it...I wouldn't feel like crap. 

But the way it's presented as this super mom single handedly thru determination and hard work dragging her kid from severe autism to a mainstream classroom that makes me feel like crap. 


Example #2
I did a speaking engagement at an autism conference a couple weeks back and Temple Grandin was the main speaker. Temple Grandin is amazing. However a big part of her story is that her mom saved her. 

And for the 1950s it is safe to say that her mom did save her.   If it wasn't for her mom Temple would've been institutionalized. So you could say that Temple's mom was a true autism super mom who thru sheer determination brought out the best in her autistic kid. 

And at that event I was speaking at with Temple, she was telling stories about her mom forcing her to do things she didn't want to do to strengthen her. 

"My mom told me I could spend a week at my aunts farm or the whole summer at my aunts farm. Not going was not an option. The idea of not going was never presented to me."

And I'm sitting there blown away by her speech, while at the same time thinking "I wish my kid had the reasoning skills and the perceptive language to understand a choice like that." 

And then I got up and did my speech and started it with something to the effect of "Temple Grandin is amazing.  She is the shining example of what we aspire all of our autistic kids to grow up to be.  Self sufficient autistic adults.  However, the harsh reality is that no matter what we do all of our kids won't grow up to be Temple Grandin.  I'm here today to talk about what life is like with a kid on the opposite end of the spectrum."

And I had several moms come up to me afterward and say "Temple speech was inspiring but it didn't apply to my kid.  Your speech was just what I needed. In my autism world I'm not worried about the types of issues that Temple talked about.  Like forcing my kid to play outside vs staying inside playing video games all day.  That concept isn't even on my radar.  I'm just trying to make it thru each day without my kid trying to injure himself or trying to potty train a 7 year old."


Example #3
I will be speaking at an autism conference soon and there are two keynote speakers. The first is a high functioning autistic adult who I've l seen speak before and the second is a mom who wrote a book about the way she brought her asd kid from point a to point b.  Her book is described as "the powerful story of one mother’s love and her stubborn refusal to give up on her child."

And I don't want to mention their names because they're both great speakers and they both have amazing things to say so this post isn't about bashing them.

However if I'm in the audience and I've got a kid older than, I don't know lets say 9 years old, and my kid is still nonverbal, still banging his head against the wall, still not potty trained and I've tried lots of stuff with him and didn't give up on him, will these speeches inspire me or make me feel like crap?

I'm not saying these people shouldn't be out there telling their stories.   There stories are full of hope and possibility.

I don't know what I'm saying exactly. 

I just want it to be known that it is possible for a parent to be a super mom or a super dad and be everything and do everything for their autistic kid and yet the autistic kid doesn't make much progress and is still nonverbal. 

That's why I think my blog has been so successful and why I'm starting to book a lot of speaking engagements. I tell a story of parents who tried lots of stuff and it didn't make things much better.   And I think there needs to be more me's out there.  

More people like me telling their stories of what life is like when you feel like you are an autism super mom or super dad, an autism warrior,  and yet despite all your best efforts and your all your super heroic hard work, your kid is still severely autistic, non-verbal. 

Despite all your tenaciousness and your "stubborn refusal" not to give up you're still not able to able to bring up your kid's functioning level from point A to point B.

Can we all admit that not every kid with autism has the potential to be Temple Grandin?  Not every kid with autism has unlimited potential?   That doesn't mean I've given up on him.  That doesn't mean we are not trying new things all the time.  We are trying a new teaching protocol right now.  But maybe all my heroic super dad work got my kid as far as he can get. 
I say in my presentations that I think that the autism miracle stories (like Temple and the supermom author) are rare, but they don't seem rare because many times that's all we read/hear/see about autism.  Why?   Because that's how the Internet works.  

So, I guess maybe I'd be totally ok with all these autism super moms and all these autism miracle stories if they all came with a disclaimer.  The same disclaimer they put in tiny print on late night infomercial diet and acne medicine commercials.




*RESULTS NOT TYPICAL

I think I'm going to end it there.  And as I'm re-reading this post before I hit publish and i see all those question marks in it, I fear that this post is going to come off that I'm angry.  And that is not the intent here at all.  My intent here is to make all the parents of kids like mine feel ok... to make sure that they realize that if you are doing all you can for your kid and your kid is still on the lower end of the spectrum, that's not your fault.  

Maybe the Temple Grandin's of the world and the Carly Fleischmann's of the world and the Ido Kedar's of the world are the exceptions to the rule... maybe their results are not typical and your kid's slow or no progress is typical..

Maybe it just is what it is...

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....Love you all! Thanks!!

 _____________________________________




Friday, March 25, 2016

Why We Don't Consider Homeschooling Our Autistic Son

So part of what you are about to read was buried in an blog post from last spring where I was complaining about a rough IEP meeting we had just come from and at that time somebody asked "why don't you just homeschool him?"

 However, I thought now was the time to make it its own blog post because at least once a week somebody will ask in the comments if we've ever considered homeschooling our 12 year old severely autistic, non verbal son.  

And while we are extremely happy with his new school this year, we've had some issues here and there with a few of his majesty's previous schools.  Some minor issues and a few major ones. 

However even during some of those rough times at the other schools we have never ever considered homeschooling him. 

Why you ask?

Well I'm sure that I (or most likely wifey) will take a lot of sh*t for this but here goes...

Homeschooling our 12 year old is really, truly not an option for us.  I don't think either of us are mentally strong enough to do it.  I know that I'm not, and wifey wants no part of it either.  

We like being his mom & dad.  I think we do a damn good job at being his mom & dad.  And even just being mom & dad of the king  is not that easy.  

And we are in no way perfect autism parents, but I think we do a damn good job...

We've found our way over the past 10+ years of being autism mommy & autism daddy... 

But to add teacher onto our roles?  I know I'm gonna take sh*t for this, but it's just not feasible.  

The king needs a happy, mentally healthy mom & dad, and if we had to think about teaching him 4-6 hours a day I think we'd lose more of our marbles.  

For those of you that are strong enough to do it I applaud you, I am jealous of you, I am impressed by you, and I tip my cap to you.  

We just can't do it.  

If I'm being brutally honest there's just not enough happy pills that we could take to make homeschooling feasible...

That's my story and I'm sticking to it. 

So the next time someone asks in the comments why we don't homeschool our kid, you can all send them the link to this blog post. 

:)

The End. 

Now I will prepare myself to be crucified in some of the comments. 

:)

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