Friday, January 15, 2016

Autism & Puberty: How It's Affecting My Son...



A few weeks back I wrote on my Autism Daddy Facebook page that I had writer's block and needed suggestions for topics for future blog posts.

And one of the topics that came up again and again and again was... PUBERTY...

Susan wrote Puberty! How do I prepare for it? What do I say? How do I help him navigate it? 
Allie wroteSomeone commented puberty. I have to agree with that one. Its something that needs attention and help. Rough for any kid, but especially when we cant explain and they are so frustrated. Nobody really talks about it. 
Alisa wrote I would love to see a post on how you plan to tackle puberty. Even though my son is only 5, I'm curious as to how I will handle the changes

And so, my popular demand, this is my post on puberty, but it's probably not the post many of you were expecting and probably not the puberty post that some of you were hoping for.

Yes, the king is 12 1/2 years old and yes he is in puberty.  He's probably got the body of a 14-15 year old.  However, up to know, so far we have not seen an increase in aggressive behavior or any of the other problematic things you hear about when autistic kids enter puberty.

However, my son entering puberty came with a different set of questions, wrong paths, and challenges... almost all unrelated to his autism.

The fact is he started going through puberty early.  He was going for some xrays and bone tests for another unrelated issue when he was diagnosed with "precocious puberty".  This was when he was about 10 and a half years old.  They did a "bone age" scan / test on him (which we had to knock him out for) and said that he had the body of a 14 year old.   There are 5 stages of puberty and he was already in stage 3.  I don't want to get graphic, (let's just say that there was A LOT going on, all over his body... (and there still is...)

You can read all the stages of puberty in boys here 

And there were some doctors that were sending us for MRI's to make sure that nothing neurological was causing his advanced puberty.  So after an MRI (that we had to knock him out for) showed nothing neurological was causing his advanced puberty we said "enough, we are not going to worry about this anymore"

Some doctors were suggesting we give him meds to slow down the rate of his puberty.  We said "Why do people do that?  What's the worst that can happen if kids go thru puberty early."

Here's the worst that can happen:


Possible complications of precocious puberty include:
Short height. Children with precocious puberty may grow quickly at first and be tall, compared with their peers. But, because their bones mature more quickly than normal, they often stop growing earlier than usual. This can cause them to be shorter than average as adults. Early treatment of precocious puberty, especially when it occurs in very young children, can help them grow taller than they would without treatment. 
Social and emotional problems. Girls and boys who begin puberty long before their peers may be extremely self-conscious about the changes occurring in their bodies. This may affect self-esteem and increase the risk of depression or substance abuse.

Our pediatrician, who we love, was the one who told us that he might be short if we did nothing about the precocious puberty, and then he whispered to us "maybe your guy being short would be better for you guys in the long run"  and we took no offense, and knew exactly what he meant.

And the social & emotional issues?  That totally doesn't apply to our son.  Self conscious of his body?!  I don't think so!  

So we figured, "if he's not raging and being aggressive while going thru puberty why try to slow it down...  let him get thru it quicker and maybe be a little shorter..."

Plus we had another fabulous reason for him to get thru puberty quicker!

For kids with epilepsy puberty can mess with their seizures.  And we are pretty sure that it did for the king.

He had the VNS Surgery for his epilepsy in August of 2013 when he was 10.  And for the first 9 months we saw a drastic reduction in the amount of seizure activity that he had.

Then as he entered puberty the seizures crept back up.  They are not back to where they were before the surgery, but they are close.  And the hope with the VNS Surgery was to get him off some of the seizure meds.

But he's still on pretty much the same amount of seizure meds as pre-surgery.  Is puberty entirely to blame?  Who the F knows?  Nobody knows.  So the quicker he gets thru puberty and the quicker he gets to what his adult body will be like for the long haul of his life, the quicker we can figure out if the VNS device is truly helping and the quicker we can figure out what seizure meds work and what ones dont...

So all of this to say that we haven't seen any signs of increased aggression in our son since puberty started like many other autistic kids have.  I mean he has his agressive moments, sure, but I dont think they can be blamed on puberty.  Heck the most agressive time of his life, what I call his "summer of rage" happened way before puberty when he was only 8 years old.  

So no increased aggression since starting puberty thankfully.  Actually he is probably more mellow now.  And more engaged.  And more present.  And more "there" since starting puberty.

The only other thing that we deal with, that I've written about before is that he sleeps a LOT.  Sometimes he's only awake for 9-10 hours per day.  I've heard that boys need a lot more sleep when they are going thru puberty, but I'm not sure if sleeping 12 hours a night and then still having two 60 minute naps per day is what we were expecting.  Maybe it's partially due to puberty, partially due to seizure meds making him sleepy, partially due to him being tired from seizures that he has that we didn't see...  We just don't know why he sleeps so much lately...

Sometimes that not knowing freaks us out...but we are so tired of chasing after another diagnosis.  The docs are saying he's healthy (minus his seizures), he looks good, he's eating well, his behaviors are good, for the 9-10 hours a day that he is awake he is a pleasure to be around...

So we are assuming that this is just a phase...

And wifey and I are watching lots of movies while he's sleeping and trying to make the best of it, and remembering the times when he didn't sleep at all...

Anyway, I'm getting way off track.  

So I'm going to end it here.  You asked for my autism and puberty post.  And you got my autism, epilepsy, precocious puberty post.

Hope some of you got something out of this... maybe not any helpful advice, but just another window into our wacky world!

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!!

 _____________________________________




Monday, January 11, 2016

I Don't Like Disability Feel Good Stories (aka "Inspiration _ _ _ _")For 2 Reasons





There’s been a firestorm of debate and anger within the disability writing community over the past month.

A website called The Mighty  has been at the center of the controversy.  They are a disability-focused online publication whose tagline is:  

"Real People. Real Stories.  We face disability, disease and mental illness together."

They have re-published a few of my articles before and gave Sesame Street really great coverage when we launched our autism initiative.


So I've got absolutely no beef with The Mighty.

However many writers with disabilities and folks within the disability advocacy community have been upset with The Mighty for awhile and a recent post on there called "Meltdown Bingo" was the straw that broke the camels back and they reacted loudly.  Check out the hashtag #crippingthemighty .

The debate and issues are long and have many tentacles that I don't want to get into right now.  Some of the debate stems from writers with disabilities feeling like the parents of kids with disabilities who write blogs shouldn't (among other things) speak for their kids who can't speak, shouldn't post embarrassing things about their kids ("Don’t post about your child what you don’t want to have posted about yourself.") and shouldn't write so many things about how hard things are.

I've changed my ways a bit over my blogging years but I'm still guilty of all of that, so I'm sure the writers with disabilities and folks within the disability advocacy community aren't huge fans of mine.

However, the other issues the disability advocates had with the Mighty is that they promote too much "inspiration porn".   

I didn't come up with the phrase inspiration porn. I call them "feel good stories".

That is specifically what I want to touch on today because this is one of those rare times that the disability advocacy & I seem to be on the same page.

They don't like inspiration porn. And guess what neither do I.

To understand why I don't like inspiration porn let's go into the Way-back machine before I started writing the Autism Daddy blog.

I've written before that I started this blog because when I was looking around nobody was showing the reality of what it's like living in Autism household.

Too many other blogs were in my words presenting a "rainbows and sunshine" view of being an autism  parent.

And before I dove into this autism blog and community the only stories that were being shared with me and that went viral with the mainstream media and the Nero typical folks were these feel good stories/inspiration porn.

The autistic kid who scored six 3 pointers at his high school basketball game is a perfect example.



Remember that heartwarming story? (refresh your memory HERE if you don't remember it)

That story happened TEN years ago, in 2006, and I still get sent a link to that story at least once every six or seven months from somebody who acts like it just happened yesterday.

Neat story but in my opinion the players and coaches did a little too much patting themselves on the back.  More on that later.

But more importantly these types of feel-good stories didn't show my reality.

It seems that the only disability stories that go "viral" are these feel-good stories and it wasn't until I joined the autism blogging  community did I realize that there's all bunch of other people out there writing reality.

Whether it be parents writing about their ups & downs or people with disabilities writing about what it's like being in their shoes.

So basically I've got two main problems with inspiration porn. One that I think is totally in step with the problems the disability advocates have and one that I think they won't agree with at all and maybe is unique to being a parent of a kid with a disability

The one that the disability advocates will agree with is that very often, in my opinion, in the stories that go crazy viral the kid with a disability didn't do anything miraculous.  They just did something that all kids do and we're treating them like a God for something that we should be happy that they did.

Or the story slants the other way and show neurotypical able-bodied people just doing something nice and being a decent human being and the story goes viral and then these people get treated like some sort of a God.

Here's two inspiration porn blasts from the past...

http://goo.gl/0RGp7p

http://goo.gl/42adca

And I don't blame the parents for writing these stories or thanking the people or businesses that were nice to their kid. But when you're a blogger and you write all the time, and then you write a throwaway story about a typical person doing something nice and that's the only story you ever wrote that goes crazy viral it makes you raise your eyebrows and makes you go hmmm...

The same thing happened to me.  I wrote a post years back called A ROUGH Memorial Day With A FREE Meal Thanks To Autism :) and a minor part of the story was that a stranger saw our struggle and paid for our meal and left us a nice note.  I included a pic of the note in the post and I guess with that title, and with that pic I was guilty of "inspiration porn" because that post got a ton of hits....  

Anyway, the latest example of inspiration porn that hits both of these categories is the early December story about a woman who bought a cake at a store and had an encounter with an employee with a disability.

Here is the sweet version of the story from the mainstream media in this case NBC News.

Birthday Cake Decorated by Employee With Autism Goes Viral




A Michigan woman's photo of a birthday cake is going viral after she shared her sweet encounter with the autistic bakery employee who decorated it with a personal touch.

 Lisa Sarber Aldrich of Grand Rapids wrote on Facebook that she went to a Meijer grocery store to pick out a cake when she asked a "bakery-looking employee" to write a message for her.

The employee took a while to return, and once she did, Aldrich realized it wasn't the "happy birthday" decoration she expected.

 "I looked her in the eye and said thank you before I even looked at the cake. After looking, I nervously laughed and headed to check out — it didn't really matter to me that it looked so bad — I thought people would think it was funny," Aldrich said on Facebook.

Cashiers and managers came over to look at the cake when Aldrich went to pay. A cashier told her the employee has autism.
"To my surprise, after they discussed it, one cashier put her arm on my shoulder and said, 'The girl who wrote that has autism. Thank you for smiling and thanking her — even though she's not supposed to write on cakes, you probably made her day,'" Aldrich wrote.
 Aldrich's post has been shared over 93,000 times on Facebook. She says she is surprised by how much attention her story has received.
Meijer spokesman Frank Guglielmi confirmed the details of Aldrich's story to NBC News, and said the grocery chain is proud to have staff that includes people with disabilities.
 "This team member was trying to provide great customer service, and our customer was very kind in the way she handled the situation," Guglielmi said. "We believe this story seems to resonate with people because it sends the message that a little kindness can go a long way." 
And something about that story didn't sit right with me from the first time I read it.  But as expected it went crazy viral!.  

And then I read this disability advocate's blog.  Her blog is called That Crazy Crippled Chick and on December 2nd she wrote a post called Why This Latest "Heartwarming" Story Isn't So Heartwarming 

Basically it is a blow-by-blow account of all the things that are wrong with that story through her eyes as a person with a disability.  She hits the nail on the head on every point.

I won't copy & paste her whole blog post here because I don't have her permission (and she's probably not a big fan of mine :-), but I learned a ton from reading it so I BEG you to read it and read how many things were wrong with that cake story and why it's a perfect example of inspiration porn.  

I BEG you to read it now.  Click here now!  We will wait for you.

Ok, you're back... did you read it?  Do you get it now?  

Anyone that's my first issue with inspiration porn...that's the one that's in step with the disability advocacy community.

My other issue is where me and the disability advocate community probably part ways.

My problem with this inspiration porn is that very often that is all you see read or hear about in the mainstream media I wrote this in a previous blog post years back that totally pertains to this.


People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...

And 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 a few years back" people might think.

 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 $$ for autism if all people know are the feel good stories people might think, "why give them research $$, they're just quirky kids...."

And that's where I stand on inspiration porn for the most part I don't like it.  It is "click bait".  For the most part it's just a way for the mainstream neurotypical, able bodied community to read about disabilities in a sweet and kind and gentle way that makes them feel better about themselves...  And in the grand scheme of things they are not even scratching the surface. 

I'm going to end it there.  Can't wait to hear everyone's thoughts and opinions, which I'm sure there will be plenty of.  

And if you're part of the disability advocacy community please know that I'm reading all your stuff and I see your concerns on all of these issues, and while it may not seem on the surface that it has changed my writing style, just know that it has...

More on that in a future blog post.

THE END!

I Don't Like "Inspiration Porn" Either, But Maybe For Different Reasons...

There’s been a firestorm of debate and anger within the disability writing community over the past month.

A website called The Mighty  has been at the center of the controversy.  They are a disability-focused online publication whose tagline is:  
"Real People. Real Stories.  We face disability, disease and mental illness together."

They have re-published a few of my articles before and gave Sesame Street really great coverage when we launched our autism initiative.

So I've got absolutely no beef with The Mighty.

However many writers with disabilities and folks within the disability advocacy community have been upset with The Mighty for awhile and a recent post on there called "Meltdown Bingo" was the straw that broke the camels back and they reacted loudly.  Check out the hashtag #cripplingthemighty .

The debate and issues are long and have many tentacles that I don't want to get into right now.  Some of the debate stems from writers with disabilities feeling like the parents of kids with disabilities who write blogs shouldn't (among other things) speak for their kids who can't speak, shouldn't post embarrassing things about their kids ("Don’t post about your child what you don’t want to have posted about yourself.") and shouldn't write so many things about how hard things are.

I've changed my ways a bit over my blogging years but I'm still guilty of all of that, so I'm sure the writers with disabilities and folks within the disability advocacy community aren't huge fans of mine.

However, the other issues the disability advocates had with the Mighty is that they promote too much "inspiration porn".   

I didn't come up with the phrase inspiration porn. I call them "feel good stories".

That is specifically what I want to touch on today because this is one of those rare times that the disability advocacy & I seem to be on the same page.

They don't like inspiration porn. And guess what neither do I.

To understand why I don't like inspiration porn let's go into the Way-back machine before I started writing the Autism Daddy blog.

I've written before that I started this blog because when I was looking around nobody was showing the reality of what it's like living in Autism household.

Too many other blogs were in my words presenting a "rainbows and sunshine" view of being an autism  parent.

And before I dove into this autism blog and community the only stories that were being shared with me and that went viral with the mainstream media and the Nero typical folks were these feel good stories/inspiration porn.

The autistic kid who scored six 3 pointers at his high school basketball game is a perfect example.



Remember that heartwarming story? (refresh your memory HERE if you don't remember it)

That story happened TEN years ago, in 2006, and I still get sent a link to that story at least once every six or seven months from somebody who acts like it just happened yesterday.

Neat story but in my opinion the players and coaches did a little too much patting themselves on the back.  More on that later.

But more importantly these types of feel-good stories didn't show my reality.

It seems that the only disability stories that go "viral" are these feel-good stories and it wasn't until I joined the autism blogging  community did I realize that there's all bunch of other people out there writing reality.

Whether it be parents writing about their ups & downs or people with disabilities writing about what it's like being in their shoes.

So basically I've got two main problems with inspiration porn. One that I think is totally in step with the problems the disability advocates have and one that I think they won't agree with at all and maybe is unique to being a parent of a kid with a disability

The one that the disability advocates will agree with is that very often, in my opinion, in the stories that go crazy viral the kid with a disability didn't do anything miraculous.  They just did something that all kids do and we're treating them like a God for something that we should be happy that they did.

Or the story slants the other way and show neurotypical able-bodied people just doing something nice and being a decent human being and the story goes viral and then these people get treated like some sort of a God.

Here's two inspiration porn blasts from the past...

http://goo.gl/0RGp7p

http://goo.gl/42adca

And I don't blame the parents for writing these stories or thanking the people or businesses that were nice to their kid. But when you're a blogger and you write all the time, and then you write a throwaway story about a typical person doing something nice and that's the only story you ever wrote that goes crazy viral it makes you raise your eyebrows and makes you go hmmm...

The same thing happened to me.  I wrote a post years back called A ROUGH Memorial Day With A FREE Meal Thanks To Autism :) and a minor part of the story was that a stranger saw our struggle and paid for our meal and left us a nice note.  I included a pic of the note in the post and I guess with that title, and with that pic I was guilty of "inspiration porn" because that post got a ton of hits....  

Anyway, the latest example of inspiration porn that hits both of these categories is the early December story about a woman who bought a cake at a store and had an encounter with an employee with a disability.

Here is the sweet version of the story from the mainstream media in this case NBC News.

Birthday Cake Decorated by Employee With Autism Goes Viral



A Michigan woman's photo of a birthday cake is going viral after she shared her sweet encounter with the autistic bakery employee who decorated it with a personal touch.
 Lisa Sarber Aldrich of Grand Rapids wrote on Facebook that she went to a Meijer grocery store to pick out a cake when she asked a "bakery-looking employee" to write a message for her.
The employee took a while to return, and once she did, Aldrich realized it wasn't the "happy birthday" decoration she expected.
 "I looked her in the eye and said thank you before I even looked at the cake. After looking, I nervously laughed and headed to check out — it didn't really matter to me that it looked so bad — I thought people would think it was funny," Aldrich said on Facebook.
Cashiers and managers came over to look at the cake when Aldrich went to pay. A cashier told her the employee has autism.
"To my surprise, after they discussed it, one cashier put her arm on my shoulder and said, 'The girl who wrote that has autism. Thank you for smiling and thanking her — even though she's not supposed to write on cakes, you probably made her day,'" Aldrich wrote.
 Aldrich's post has been shared over 93,000 times on Facebook. She says she is surprised by how much attention her story has received.
Meijer spokesman Frank Guglielmi confirmed the details of Aldrich's story to NBC News, and said the grocery chain is proud to have staff that includes people with disabilities.
 "This team member was trying to provide great customer service, and our customer was very kind in the way she handled the situation," Guglielmi said. "We believe this story seems to resonate with people because it sends the message that a little kindness can go a long way." 
And something about that story didn't sit right with me from the first time I read it.  But as expected it went crazy viral!.  

And then I read this disability advocate's blog.  Her blog is called That Crazy Crippled Chick and on December 2nd she wrote a post called Why This Latest "Heartwarming" Story Isn't So Heartwarming 

Basically it is a blow-by-blow account of all the things that are wrong with that story through her eyes as a person with a disability.  She hits the nail on the head on every point.

I won't copy & paste her whole blog post here because I don't have her permission (and she's probably not a big fan of mine :-), but I learned a ton from reading it so I BEG you to read it and read how many things were wrong with that cake story and why it's a perfect example of inspiration porn.  

I BEG you to read it now.  Click here now!  We will wait for you.

Ok, you're back... did you read it?  Do you get it now?  

Anyone that's my first issue with inspiration porn...that's the one that's in step with the disability advocacy community.

My other issue is where me and the disability advocate community probably part ways.

My problem with this inspiration porn is that very often that is all you see read or hear about in the mainstream media I wrote this in a previous blog post years back that totally pertains to this.

People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...
And 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 a few years back" people might think.
 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 $$ for autism if all people know are the feel good stories people might think, "why give them research $$, they're just quirky kids...."

And that's where I stand on inspiration porn for the most part I don't like it.  It is "click bait".  For the most part it's just a way for the mainstream neurotypical, able bodied community to read about disabilities in a sweet and kind and gentle way that makes them feel better about themselves...  And in the grand scheme of things they are not even scratching the surface. 

I'm going to end it there.  Can't wait to hear everyone's thoughts and opinions, which I'm sure there will be plenty of.  

And if you're part of the disability advocacy community please know that I'm reading all your stuff and I see your concerns on all of these issues, and while it may not seem on the surface that it has changed my writing style, just know that it has...

More on that in a future blog post.

THE END!

Friday, January 8, 2016

Autism: When To Throw In The Towel On The Diets & Bio-medical Treatments





This is not a post that is bashing the GFCF diets and other biomedical treatments.  I've recounted in a previous blog post that we tried lots of biomedical / DAN "Defeat Autism Now" doctor stuff with the king in his younger years with autism.  (I believe the term "DAN doctor" doesn't exist anymore and it is now called MAPs doctors?).

Anyway, You can check it out that post and read how we tried pretty much everything GFCF diet,  hyperbaric oxygen chamber vitamin,  B12 injections,  etc. etc. etc. etc.

When he showed no improvement with any of those things we stopped trying and stop going to those kinds of doctors a few years back with no regrets. 

And over the years I've noticed something.

I've noticed that as the king has gotten older and we have birthday parties for him and holiday parties in the school with kids in his class we never have to worry about special dietary restrictions anymore. 

When he was younger we would always check to see if there was any kids on the GFCF diet or any other diets and lo and behold in every class or at every gathering of autistic kids there was always two or three. 

But the king is now 12 and in a classroom with severely autistic kids between the ages of 12-14. And I'm pretty certain that none of them are on the GFCF diet.  And I'll bet if I polled the parents that none of them are doing any bio medical / DAN Dr. approaches or protocols

And I think my observation is that it wouldn't shock me if we never run across a kid 12 and older who's on the GFCF diet and/or continuing down the bio-medical path.

My thinking is if your kid had success with the GFCF diet or other biomedical approaches, maybe your kid improved so much that he probably won't be in the severely autistic class with my kid so we wouldn't see him.

And if your kid didn't have success with the GFCF diet or other biomedical approaches and he's still in the "low functioning" classroom like my kid, well then why the heck would you still be throwing your money out the window.   :-) 

Basically, we all can admit that the diet is expensive (and difficult) and most of these bio-medical approaches are expensive (and difficult).  So after years of no success there's nothing wrong with pulling the plug I say.  

And let me say again that I think that the diet and some of the other biomedical approaches are definitely worth trying.  It's almost a rite of passage for autism parents these days to try this and that.  And I don't want to be the guy to tell you not to try something that could really help your kid.  And I have very few regrets for trying some of this stuff on the king.  My wallet has HUGE regrets, :-) but not me.


I believe that some of those things work!  When people rave about the amazing improvements in their kid after ___ treatment I don't think they are lying... and I am truly THRILLED for them
I understand that they want to shout it from the rooftops! 
But maybe what's causing their kid's autism is different than what's causing mine. 
Do you really think that the asd kid who showed significant improvement with the GFCF diet would also have shown significant improvement through chelation? 
Do you really think that the asd kid who started talking after 20 "dives" in the hyperbaic oxygen chamber would also have started talking after 20 sessions of neurofeedback? 
Now, assuming you believe those things work than each of those kids had a different kind of autism... one that was helped by gfcf, one by chelation, one by oxygen chamber, and one by neurofeedback. 
And we spent the better part of 4 years trying to find the right treatment to "unlock" my son Kyle and help him make some improvements.

But as my son gets older I just don't see or hear about kids in his circle doing any of these approaches. And when I think back to the days that we would go to the doctors I never remember seeing a kid over the age of nine (?) in any of the waiting rooms are on their websites. 

Again my point here is if you did use these approaches and your kid had a nice,  I don't want to say recovery, but a nice boost in functioning level then he probably wouldn't be in my kids classroom. 

Maybe the moderate to high functioning classrooms of 12 to 14-year-olds have kids who are still doing the diet and biomedical approaches?  And we just don't see them?

Now, a quick note, I know some people have their kids on the GFCF diet (or other diets) for other reasons (celiac disease, digestion issues, etc) and of course that makes perfect sense.  I'm just talking about the parents (like me) who started their kids on the GFCF diet hoping to see huge cognitive gains and/or behavior gains.  If you didn't see them after 2 years, you'd throw in the towel, wouldn't you?

I kinda don't know what the point of this post is.  However, it's been rolling around in my head since May when we had my son's birthday party with all his ASD friends and for the first year ever we didn't have to buy a GFCF pizza.  Mostly all the same kids... which I guess means that one or two more parents threw in the towel and gave up after quite a few years of trying the diet.

I'll just leave it at this...
I said before that I don't want to be the guy to tell you not to try something that could really help your kid....

But on the other foot, I do want to be the guy to tell you, and maybe the only one to tell you, that it's perfectly ok to throw in the towel whenever you or your kid gets burnt out on all the biomedical treatments.  That doesn't mean you're a bad parent and it doesn't mean that you're giving up on your kid.  It just means your a realist, and you are looking at your kid, and his/her functioning levels, and the odds and your wallet and making an educated guess that throwing in the towel, and spending that money on something else (a trampoline! :-) is the right thing to do and a better thing for your kid and your family.  

As far as me and my kid.  Will we ever try another bio-medical treatment with the king?  

I dunno.  Every once in a while, someone will send me a link to some new protocol and I will read up on it and watch the "before and after" videos and get excited... 

but then today as I was researching DAN doctors for this blog post I saw some of the "recovery" videos about the B12 injections... the same videos that I watched 9-10 years ago when we first went down this biomedical path with my son, and I remembered how excited I used to get watching those videos and the disappointment that I felt when he showed no improvements...  same thing would happen with every new protocol. 

I'm not sure if I could put myself through that any more.  I guess if I had first hand account of a kid that I knew who was like my son, and improved after some new protocol that we haven't tried I might jump back in...but I guess I'm done with the rest...

That's it.  The END...

Totally didn't mean for this post to end on such a downer.  In fact I had no idea where this post was headed and this is where we ended up....oh well, hope y'all enjoyed it and it made sense...


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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, January 4, 2016

My Son's Autism Honeymoon Phase & His Return To Baseline






I got to stop getting fooled by my son's honeymoon phases. 

It happens every time.  The king go through a honeymoon phase whenever he has something new going on in his life. 

He'll have a honeymoon period when he goes on a new anti-seizure med, and his seizure activity will drastically decrease.  Yay! 

He'll have a honeymoon phase when starting a new school or a new school year and will be doing great.  Yay!

He'll have a honeymoon period where his appetite is great, and his behaviors are great.  Yay! 

What I mean by a honeymoon period Is he goes through a phase where things are starting to look up.  And ol' Autism Daddy gets very excited. 

In the last few weeks of December we went through one of those honeymoon phases.

We were getting glowing reports at school about his behavior and his general awareness. 

He was having almost no seizures.

He was napping a lot less and seemed to have more energy and more stamina, and he had a great appetite.  He just seemed happier and more "there".

And whenever these things happen whenever my son goes through these honeymoon phases I go and make the mistake and get all happy and giddy. 

Wifey enjoys this good phase, but she will stay more even keel.  

And then inevitably the honeymoon period ends. 

So, over the break he had two really big seizures. These were two that were long enough that we were almost preparing the emergency rectal medications. 

He also napped a lot over the break which could have been from additional seizure activity we didn't see.

And his behaviors got a bit worse, his appetite decreased, and he seemed a bit more anxious, not as happy, not as engaged, not as "there".

And when this happens when his honeymoon period ends I always take it hard. 
("that's what she said) :-)


Wifey doesn't take it as hard, again because she's more even keel. 

And, all in all we all had a really great holiday break. This is nowhere near the worst it's ever been in any of these categories (seizures, behavior, sleep, appetite)

And the good stretch that we just came out of wasn't the greatest stretch that he's ever gone through either.

But I always take it hard 
("that's what she said) :-)


It's almost like I am slightly bipolar.  I'll have really high highs when he's doing great and really low lows when he comes crashing back down to earth. 

I get too up and excited during the good times and too low during the inevitable crash. 

But this honeymoon phase has been his pattern for years so you think I would've learned my lesson by now.

I guess I'm an internal optimist. Whenever he goes through a really good stretch I think we're turning a corner and maybe heading towards some greener pastures. 

And that's not to say that he hasn't made any progress. I guess I'm just greedy and I'm always looking to turn a corner quicker then the king is prepared to. 

But what I have come to realize, and maybe wifey already realized this subconsciously, is that the King has a baseline. 

It seems he has a baseline for his behaviors, a baseline for his seizures, a baseline for his aggression, a baseline for his naps, a baseline for his breath holding, and a baseline for his appetite. 

During the honeymoon period he goes above the baseline and improves on all fronts and I get happy. Then he returns to baseline and sometimes goes below baseline and has a bad stretch whether that's increased seizures, increased aggression at school, whatever and I get really bummed out. 

But he always seems to return to his baseline. 

And the reason that I'm writing this today is that today is the Kings first day back to school after the winter Christmas break and I'm a bit worried that his honeymoon period at this new school might come crashing down. 

He's always had a pattern of holding it together and doing well in the late part of a year November - December. 

And then having a really rough first couple of months of the new year, usually with aggressive behaviors, that sometimes bleed into mid spring. 

But I gotta remember not to get so down because he always seems to return to his baseline.

He also has a neurologist appointment this week where we will talk about the return of the big seizures, and they will either want to increase one med, or maybe try a different one, and that will probably affect his sleep & appetite negatively. 

But I gotta remember not to get so down because he always seems to return to his baseline.

Maybe if he always just stayed at baseline it would be easier on me. (because it's always all about me, right? :-)  

If someone waved a magic wand and said this is the way he's gonna be for the long haul, with this appetite, and this amount of seizures, and these wacky behaviors, I think I'd sign up for it.

But then I would probably come to miss those honeymoon periods, where the king is at peace with himself, and extra happy, and all is right with the world.  

I guess I just need to be less bipolar, and more like wifey, more even keel thru the ups, and downs.

That's all I got.  I'm gonna end it here.

Oh wait, I just an after school text from wifey saying that the king's teacher said

"...he had a great day!   
Happy as can be in the pool & great all day. 
Lots of smiles.  
2 naps.
Seemed happy to be back."

But I'm not gonna get too excited over this.  I'm gonna stay even keel, cuz I'm cool like that...  :-)

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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