Tuesday, July 12, 2016

Autism Service Dog Program Eliminated?! Help Save It!






Paula's graduation picture
As some of you may know, we have an autism service dog for my son.

My autistic son is 13 now but we got our precious dog "Paula" 6 years ago when he was 7 years old, and at his most difficult behaviorally.  And Paula was a godsend and extremely helpful to us.

We got Paula from an amazing organization called Heeling Autism. It was an offshoot of the long-standing not-for-profit Guiding Eyes for the Blind (GEB) 

GEB had a long and storied history of supplying guide dogs to the blind population for the past 60 years.

And back in 2008 they launched a program that took guide dogs that weren't a right fit for working with the blind, and they retrained them to work with kids with autism and gave them to these families for FREE!

I wrote all about our experiences with Paula and the organization back in 2011 on my blog post, "The Story of Our Autism Service Dog Paula" that you can read HERE.  I encourage you to go over and read that for more of a blow-by-blow of how we got her and how she helps.

In fact I really think you should read that one before continuing on with the rest of this post.

Go read it.  Now!!  READ IT HERE!

We will wait for you, and while we are waiting we'll look at some pics of some more cute Heeling Autism service dogs doing their jobs.







ok, are you back?  Sounds like a pretty amazing program, right?  Cute dogs, right!?

The one thing that always stuck with me over the years about the HA program was the amazing trainers.  As I wrote in that post:


the 3 trainers we worked with were AMAZING!  They somehow knew more about autism and our daily struggles than many people / even experts in our autism world...  And they’ve only been doing this for 4-5 years.  Before that they were blind guide dog trainers.  Anyway…  AMAZING women.

Well the reason I'm writing today is that the Heeling Autism branch of GEB is being eliminated.  That's right the amazing organization that you just read about is going, going, gone!

And this makes absolutely no sense to the 70+ families who have received the miracle of a service dog from this organization.

The reasons that have been given by GEB of why the program is being eliminated are frankly ridiculous.

What they are stating is that the program is too expensive and wasn't self sustainable in its current model.
Yet, Heeling Autism costs less than 1.5% of the organization’s total annual expenses, including less than 50% of the postage/mailing services and less than 23% of the printing/publications expenses.

And worse of all, GEB gave nobody any indication that the program was in trouble.

The families who have received these dogs would gladly have fundraised like crazy if we knew there was a problem. But we were never given the chance.

GEB is trying to appease the autism community with plans to instead offer therapy dogs to schools. 

Saying that clearly undervalues exactly how monumentally helpful and life-changing these "service dogs" have been to the 70+ families that have received one.

Can you imagine saying you're not going to give a blind person his or her own guide dog but instead going to put one dog in a group setting for a bunch of blind people to benefit from?

In both the blind and autism community there is a huge difference between a therapy dog and a service dog trained to perform very specific safety oriented tasks. 

For many of us having a service dog saved our kids lives on countless occasions.

For some of us the idea of going on a plane or going on vacation was impossible with their autistic kids until the service dog came into their lives.

However, the board of directors at GEB makes this seem like a done deal.

The Heeling Autism program as we knew it will be eliminated after they graduate dogs for the 10-15 families that are on their wait list.

(Meanwhile, they shut down their wait list a few years back because it grew too long and they didn't want to dedicate more trainers and dogs to the Heeling Autism program)

After those wait list families get their dogs GEB says they are moving towards this therapy dog in the classroom model.

And there's a bunch of us who are trying to reverse this and implore them to go back to the current model.

And this is where you come in.


A petition was started by graduates (a part of a team with either a guide dog or autism service dog), staff, volunteers, donors and members of the community who believe strongly in the Guiding Eyes mission, and we’re concerned about the direction Guiding Eyes has taken under the current leadership. The abrupt elimination of the Heeling Autism program is just the tip of the iceberg.  

So we started a petition to Save Heeling Autism that you can find HERE or by clicking below.




So I implore you all to please sign it, and share it (using #SaveHeelingAutism), and post a comment on it.

One last thing to mention, we autism families never wanted to make this a competition between the blind and the autism communities.

They both deserve service/guide dogs and GEB has plenty of dogs to go around.


And while the CEO is using the need for GEB to operate as a financially responsible organization as a reason for Heeling Autism's elimination, they have recently launched (and seem to have enough dogs for) a new program called "Running Guides" which is dedicated to training guide dogs to help blind runners run long distance races.

Saving the lives of children on the autism spectrum by preventing them from running out into a busy street, or wandering away to be lost, drowned, or even killed, is arguably an equally worthy cause.

Also, as any service dog trainer will tell you training a dog to run those long distances will almost definitely shorten that dogs working, service dog life.

So we implore the Board of Directors at GEB to reverse their decision and reinstate the Heeling Autism program to its current model. And if possible to put even more resources towards the autism service dog program.

And when you sign, comment, and share the petition you'll see a lot of the other comments.  And you'll read a lot of negativity.  Yes, things have gotten a bit nasty over at GEB.  There has been a lot of staff turnover and turmoil.

Just last week the long time head veterinarian was abruptly fired.  He worked at GEB for 26 years and knew every dog, and every dog recipient and their family (both the dogs for the blind & the autism service dogs).  

Many of us think that his firing is in retaliation of this petition as his wife is the head trainer of the Heeling Autism dogs, one of those amazing trainers I wrote about above.  

But we feel that it's not too late to turn this around!  Please sign, comment, and share the petition like crazy.

Thanks!  Now here's two more cute doggie pics for ya of the king and his princess "Paula"


Summer 2010
Summer 2016

Wait, here's the petition one more time!  #SaveHeelingAutism  Please sign, share, tweet, etc!  You can also reach the petition at www.saveheelingautism.com

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!!




Friday, July 1, 2016

7 Secrets to Going On Vacation w/ My Autistic Son








People are always asking how we do so well on vacations with our severely autistic son.  They see our pics from the NJ Shore overnight getaways and pics from our week long upstate NY Lake vacation and marvel at how we do it.

Well I'm here to tell you that it is not easy.  It takes a lot of work and planning and mental strength and patience, but over the years we have gotten much better about it.  

Here's a few of our secrets.  Most of these secrets are more about the parenting aspect of things.  How to survive.  :-)  And most of these secrets pertain to our longer getaways.  The overnights we've gotten better about, but the week long getaways need a lot of...

1) Planning, Planning, Planning.  
We take a lot of stuff with us, particularly when we go away for that whole week.  For the weeks leading up to our trip our home office becomes wifey's staging area.  Here's a pic. 


And the place we stay has a kitchen so we bring LOTS of the king's favorite foods.  



Every year on Facebook I take a picture of our minivan trunk before we depart and it's quite hilarious how much stuff we bring for 2 adults, 1 kid, and 1 service dog.  Here's a pic from last year. 

If you look closely you'll see a toaster oven?  Yeah, we even bring our own toaster oven.  

Yes, we have a full kitchen in our hotel, but it lacks a toaster oven, and boy a lot of the king's meals are made in a toaster oven (hot dogs, chicken nuggets, waffles, etc).  

Lately we've been feeding him in the room before we head to a restaurant so that at the restaurant maybe he'll just watch a show on his ipad and let mom & dad scarf down a meal.


You can also see his big green bouncy ball in that pic of our minivan.  What you can't see is that the backseat is filled with the king's favorite books and toys.  Whatever they are at that moment.  And then when we get to the place wifey sets up his room with all the stuff to make it feel at home.



We also bring our own sheets.  One for familiarity, two because wifey gets skeeved out by hotel sheets sometimes, and three in case the king has any accidents.  We also put a sheet on the couch in the living room in case 

his majesty wants to lick the couch, he's licking our sheets, not their 20 year old couch.

Lots of planning goes into our week long getaways, and wifey does MOST of the work, but I do some which brings us to #2.


2) During the Planning Make Sure You Each Have Your Role.
Wifey does everything related to the packing and planning for our trips.  I have five very important jobs.  

(1) I'm in charge of gathering and packing all the king's medicines and our medicines together  


(2) I'm in charge of gathering & packing all of the toiletries -- soap, shampoos, toothbrushes and toothpaste, condoms :-), hair brushes, hair dryer, etc. 

(3) I get all the electronics together (Ipads, laptops, phones, cameras, dvd's) and make sure we have enough chargers for all of them.

(4) I pack the minivan with all of this crap.  Let's see another pic of our packed minivan...


(5) I do all of the long distance driving.  (wifey does most of the driving during our week away)

Those are my 5 jobs.  Wifey does everything else.  And lately we've been much better about trusting the other person to do their jobs without asking questions or second guessing each other.  Except that one year when I forgot the melatonin!!!!  OMFG!!  :-)











3) Familiarity 
Again, these are secrets that work for our kid.  So your kid might be different, but we stay at the same place every year.  It's not the fanciest place.  It's pretty down & dirty (hence why wifey wants to bring her own sheets), but it's familiar to us.  The king isn't one of those kids who freaks out when things aren't the same way every time, but over the years we've tried to stay in the same room every year.  Room 131.  It's a 2 bedroom efficiency and the king's bedroom is always the one on the right.  

It's nice to watch my son enter a place that he hasn't been in for a whole year and immediately know where everything is and know which room is his and what is expected of him.

4) Convenience
The other reason we stay there is that it's very, very convenient.  Our room is just steps from the lake.  I can be a bit of a cheapskate and years back I tried to save a few dollars by staying in a less expensive room that was farther from the lake.  However, with an autistic & epileptic kid who can have a meltdown, potty accident, or seizure at any given moment, it's really nice to be steps from our room.

5) Deal With The Kid That You Have That Year
My wife and I said to each other on one of our drives up to the lake, "it's like we show up to the lake with a different kid every summer" and it really is true.

And we try & structure our vacation activities around what kid we have that year.

For example, in the real old days, in 2009BM (Before Melatonin), we had a kid that would get up at the crack of dawn and stay up really late and couldn't stand being in our room/cabin.  So he would have us out all day long.  We'd be at breakfast as the restaurant was opening up.   We'd spend days at the amusement park because he wanted to be on the go all the time.  And we'd have to drive around for an hour at night to get him to sleep in the car before carefully transporting him to the room.

And lately since my son has matured he is a lot more mellow.  And is a lot cooler with just relaxing by the lake so that's what we mainly do.

And he probably sleeps too much while on vacation, partially due to being a teenager, and partially due to his seizures / anti seizure medication.    

So the past couple of years on vacation he's needed a late morning nap.

The first year that happened wifey & I got frustrated. "He's missing out on valuable sunshine and lake time!"

But last year we decided to respect his late morning nap and work it into our schedule. 


We try to do some stuff together before the nap (lake time, breakfast out, etc) and then give him every opportunity to nap when we get back. 

And during his 60-90 minutes of slumber we use that time to our advantage.  

I might go for a run while wifey watches him, or wifey might do yoga lakeside while I watch him
, or maybe we'll use that time to "made sandwiches" while he's napping (that's code for something :-)










6) Don't Compare Yourselves to Typical Families You See Around You / Deal With The Hand You've Been Dealt. 

The big village near where we vacation is a big throwback to an old days vacation spot. There's mini golf, arcades, ice cream parlors, etc. All things my son hates or is indifferent about. 

Some years we travel up with other family members.  

And after dinner the conversation always goes to "should we do GoKarts tonight or mini golf" 

Meanwhile my kid is yawning like crazy and annoyed that he's not in bed already. 

In the old days I would feel sad or jealous of all the stuff they were doing...all the stuff that my guy was missing out on...

But I guess I've matured (or my antidepressants are REALLY working) cuz the past two years I am fine with the fact that by 9:00pm the king is asleep and wifey & I are in our room in our PJ's watching "Everybody Loves Raymond" repeats on TV Land while some family are in the village at the arcade. 

I think I realized that I was the one who felt sad. I was the one who was jealous. My guy 
wouldn't like most of that stuff. So he really wasn't missing out on anything.

And the same goes for other families that we come across. 

Am I jealous of the father that I see going out fishing with his son at 6am?  Yes. 

Am I jealous of the families that I see that rent boats & go water skiing? Yes. 

But that jealousy only lasts for a few minutes whereas years ago it would have lasted for a few hours

I guess that's because over the past few years, I've come to the realization that fishing, water skiing, etc is not part of the hand we were dealt. We were dealt the autism & epilepsy hand.  And I've come to accept that and try to have the best vacation we can have. And do mostly things according to my son's likes and needs while once in a while being selfish and pushing him out of his comfort zone to do something we like, like a dinner out at a restaurant or fireworks. 


7) Remember.  You Are On Vacation Too!
You are on vacation too, damnit!  Put your feet up when you can! 


Throw your diet out the window!  Eat some bacon, barbecue some burgers, have some adult beverages!  And "make some sandwiches" as often as you can!  :-)

That's all I got.  That's 7 things that help us survive going on vacation with our 13 year old goof ball with autism & epilepsy.  

We'll be going away to the lake again the last week of August.  We shall see what this year brings and if I come home with any new secrets!

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!!


Thursday, June 30, 2016

Losing Hope Is Not a Bad Thing









Earlier this week, I published the following picture on my Autism Daddy Facebook page...




I only added that last line "boy I wish he could say that!) because I get new followers all the time who dont know the king so I wanted it to be clear that my son didn't say that and couldn't say that...

But because I added that last line the photo went kinda viral and reached a lot of people.  And I got a lot of comments.


And quite a few of them were things saying "don't give up hope"  "he might talk some day" "he might surprise you" "keep the faith", etc, etc.

Well I'm here to say loud and clear that I don't have faith that he will talk one day.  I don't expect him to surprise me.

Basically, I have given up hope of my son ever speaking. 

And I think that's what keeps me sane.

When folks innocently ask me "Do you think your son will ever speak?"  I just smile and say "Nope.  I don't think he ever will."

They are usually taken back by the answer, but it's true.









Now, I didn't say that I've given up hope that my son will ever communicate, just that he won't speak

He's now 13 years old.  And he's completely non-verbal with autism & epilepsy.  And, yes, I have given up hope that I will ever hear words coming out of his mouth.  

I don't think that makes me a bad parent.  I just think that makes me a realist.

If I was still holding out hope that he would speak I think I would be losing my mind. 

Every once in a while someone on my page will say "my kid didn't start talking until he was 11" and I get hopeful and I want to immediately email them and find out what the magic bullet was for their kid that starting him talking at such a late age.  And then I start going down that rabbit hole of having some hope, and it never ends well.  It ends with me in a funk and depressed.












So, me not having hope keeps me sane.

I got a few other comments to the effect of, "God can do miracles"  "Keep praying"

And I'm not a religious man, but if I was, the idea that I should keep "praying" for speech and "He might surprise me" would have sent me away from religion a long time ago.  If God hasn't answered my prayers for the first 13 years, why should I keep praying?


Now all of this doesn't mean that we are still not working towards speech.  We are not giving up on speech therapy at his school.  But, maybe we are not fighting at his IEP meeting as hard as we would have years back to get 5 speech sessions a week at school instead of 4.  And we are ok if they focus more on communicating with a device versus trying to get words to come out of his mouth.

We just want him to be happy.  And for the most part he is happy when left along and not bothered about trying to speak.

And every once in a while a family member will say to him "C'mon say_____.  I know you can say it!" and I get frustrated on behalf of the king.  Can you image someone saying to you "C'mon speak Swahili.  I know you can do it!" You'd want to punch them in the face.

Anyway, that's all I've really got.  And please don't take this blog post to mean that I'm upset at folks for writing those comments... or that we are going thru a particularly rough patch with the king.

Also, don't take this blog post to mean that I think that having hope is a bad thing or believing in prayer is a bad thing.  

I just felt the need to write this because I felt that it's really important to say that giving up hope is also not a bad thing...

I also don't think that me giving up hope is keeping him from speaking.  

And if my son does one day speak I will be thrilled and surprised, and I'll probably find some God to thank.

But for now, I'm just living my life trying to keep him happy and myself sane.

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!!

Friday, May 6, 2016

Rage, Autism & Epilepsy: Why There's Not Much Progress Around Here











The king is going thru a mini "spring of rage" :-(

Back in 2011 when I first started the blog I wrote often about his "summer of rage". Well, he's made a bit of a triumphant return to his raging days...and he's taking it out most on his teachers, therapists, and aides at his school...
I've written before that he normally has a rough last couple of months of each school year where his bad behaviors escalate... but this time it seems a little bit different, it seems like he can't control it...

He'll be doing fine and then it's like somebody flips a switch and he just becomes a bit of a wacko... biting, kicking, spitting usually with a smile on his face and very often with a maniacal laugh which makes it all a bit more infuriating...

Sometimes it seems that his eyes become dilated before these rage episodes**

Unfortunately, there's really not much we can do about all this. And this is a case where managing his epilepsy trumps managing his autism.

As I mentioned a week back or so, he's still having one BIG, SCARY seizure a week, so we have to focus most of our energies there. We had a neurologist appointment 2 weeks back and they increased one of his meds. And maybe that increase is causing the rages?  
But not having seizures is more important that all of it. I wrote a post way back in 2012 called "I'll Take Aggression Over Seizures Any Day" and I still feel that way.   It sucks that we have to have one or the other... but sometimes it feels like that is the case...
Again, we have no f$$king clue what's causing the rages. Other times in the past, it was more obvious that he was hitting or biting to get out of doing something. However, as I hinted at earlier, with these ones recently it almost feels like he's having an out of body experience. He'll be cuddling with you one minute and then that switch will flip and he'll hit you.
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I think we just have to ride it out and hope that it's just a phase and hope that his teachers, therapists, and aides remember the sweet boy they had for the first 7 months of the school year. Hopefully that buys him some good will. :-)
Seriously, I have no doubts his school staff can handle him and love him, but when he gets on one of his rages it can be tough so I'm worried for them a bit because he's gotten a lot bigger and stronger over the past few months (thanks to peanut butter!) :-)

What really sucks about all this is that it prevents him from making any real progress at school (or at home)... and this has been the case for quite a few years now, but lately I'd say it's mostly because of the Epilepsy.
Over the past few years his time at school has been filled with lots of sleeping due to seizures or seizure meds making him sleepy.

And now we are finally at a stretch where he is not napping as much at school, but instead he is raging.

And both sleep and raging prevent any significant "school work" from happening...

When he is sleeping he is obviously missing school work and the routine of the day... and when he is raging focus and attention to any tasks is difficult for him and they need 2 staff members on him for huge chunks of the day to protect the other kids.

So when I see the IEP Goals each year, and then I see how he barely met any of them, I know what to blame... Sleep and rages... There's just not enough hours in the day sometimes when you've got sleep and/or rages to contend with...

And again, these rage episodes seem to happen more at school, and when he is not raging or sleeping he is himself and is pretty happy go lucky... but he still sleeps too much.  
Anyway, that's all I got. I just wanted to update you all on what is going on with his majesty because I've been re-posting a lot of old blog posts lately, but haven't given you any new updates on the king...

That's it. THE END

** = I hesitated to write that sentence about his pupils being dilated because I know I'm gonna get a ton of comments with explanations for what that means and I know some will scare the sh&t out of me. Just know that, of course, I've googled it and I know all of the things that it could mean. So please think before you comment about that and please don't scare the sh&t out of me! :-) 

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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!!





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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