Wednesday, May 28, 2014

Hey Autism Community! Give Toni Braxton A Freakin' Break!






As usual I'm a little late to the party with my "Reaction to Toni Braxton's Comments" post. 

Whenever a big story comes down in the autism community 5-6 people will email ol' Autism Daddy asking my reaction. 

And very often I don't write my reaction because the story doesn't really affect my life and because as I've written many times before even though I have an autism blog I try not to live & breathe autism 24/7 (read)

But this time 6 people asked for my Toni Braxton reaction.  I think half of them thought I would be appalled by her comments (they don't know me very well do they) and half thought that I would totally understand and get where she was coming from. 

So I googled it to see what all the hubbub was all about. 

And the first headline I saw was this from the Huffington Post.




Catchy headline, huh. It's got everything. It's got religion. It's got autism. It's got abortion. It's got all the hot button topics wrapped into one. 

I read the article and I was like "feh big deal"

My takeaway from reading that one article was 

She was brought up in an extremely religious household. She had an a abortion which she was guilt ridden about. And when her son was diagnosed she wondered if this was punishment from god. 

What's the big deal?

I know, I know.  Many people in the autism community are saying autism shouldn't be considered a punishment, autism is a gift...but I've written before how I don't buy into that line of thinking(read) ...

But what if her son read that some are saying?  He will think his life was a punishment to his mom?

No, Toni is saying that she thought the disorder that he has (yes I'm calling autism a disorder) might be punishment from god, not her son. 

If her son was born blind or deaf and she said that would there be this much controversy?

Oh my god her deaf son might read that his mom thought his deafness was punishment from god. How can he look at his mother the same way again?!

What is it about autism (and autism alone?) that makes parents evil if they express that they wish their kids didn't have this disorder?

And let's go back to what Toni said. Even if you feel autism is a blessing and "wouldn't change your kid if you could". Did you always feel that way?  Or did it take quite a few years for you to get to that "autism is a blessing" place?

When your kid was first diagnosed weren't you angry & scared?  Didn't you ever wonder "why me"?

Well that is what Toni Braxton was writing about. When her kid was first diagnosed she wondered if his autism diagnosis might be punishment from god. 

What, people aren't allowed to express how they felt in their own autobiography?!  She's supposed to suppress that part of her life, that part of her story so as to not offend the autism community... which by the way should be embracing her?

I read that one article and then I read a few others and then I read some of the articles & blog posts with some of the criticism she got. And some of the criticism is that she still feels that way... and that the comments she made to US Weekly (quoted in that Huff Post article) stating that she now feels differently were just her way of back-tracking...but her book tells how she really feels...

So I wanted to read the autism pages of her book for myself.  It seems that nobody else has done that.  Everybody is just reacting to the part of the story that the media has spoon fed them. 

So I went on amazon.com and within seconds using their "peek inside" and their search book feature I found all the pages that refer autism. 

And I'm not sure if this is copyright infringement but here they are. The actual pages from Toni Braxton's book, Unbreak My Heart: A Memoir that talk about her son's initial autism diagnosis.  

(the word autism is highlighted in orange because that is how I found these pages)











That's pretty much it, folks...

So the takeaways for me after reading those pages are 

--that she was angry when her son was first diagnosed (weren't we all?)

-- that her pediatrician didn't take Toni's motherly instincts seriously enough (happens to most of us, no?)

-- that because of her strict religious upbringing she initially thought this might be gods way of punishing her for a previous abortion which she said 2 pages later she doesn't believe anymore. 

--that the supposedly evil Suzanne Wright from Autism Speaks personally called her the day after  her son's diagnosed hit the press and offered her support and help. 

So again, I don't see what all the fuss was about. If you want to be mad at anyone be mad at the press (or maybe her publishing company) for pulling out this autism is punishment story and making it the main focus of her book. 

By the way, on amazon the book is listing at 272 pages and the word autism only appears on 7 pages.  That's less than 3% of the book.  So the book isn't all about autism. 

It's an autobiography. People write about the tough times and the good times in autobiographies. The great autobiographies really get into how the person felt during important moments in her life. Her son's autism diagnosis is one of those moments. And from what I read she attempted to write about it openly and honestly. 

For that she's been crucified. 

I just don't get it.  What am I missing here?  What angle am I missing?

--If you're anti-abortion you can be mad at her for having one. Fine. 

-- If you don't believe in god or don't believe that god is a vengeful god you can maybe disagree with her.  Ok. 

-- if you don't agree with her non-committal stance on the autism & vaccine issue, no matter which way you lean, you can maybe be mad at her... but again she didn't write an autism book she wrote a memoir about her life...so let's not get wrapped up in the vaccine issue. 

-- you think she's a horrible singer...or she's too sexual for your taste...fine....although i got no problem with either :-)

-- but for her to say that she was angry when her son was first diagnosed with autism and she wondered if it was god's way of punishing her for an abortion but she doesn't feel that way anymore?   That's what people are up in arms over?

Come on autism community!  There's so many more important things to get riled up and ticked off about. 

Let this one go. 

Cut Toni some slack. 

That's it. That's all I got. 

THE END. 

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Monday, May 26, 2014

A ROUGH Memorial Day With A FREE Meal Thanks To Autism :)





It's 8:41pm on Monday night and I can hear the neighbors behind my house still partying & enjoying their Memorial Day BBQ.  But, me, I'm sitting in the dark in Kyle's bedroom thrilled that I got him to sleep already so the wife and I can watch tv and relax.

It's been a long, extremely rough, crazy, and exhausting Memorial Day...  with a little guilt thrown in.

I'll get to the guilt first...  I feel guilty complaining about Kyle's bad behaviors because we he has a day or two filled with big seizures and long naps that often follow big seizures wifey and I often wish for & long for things to get back to "normal".

"I'd much rather him be acting crazy stimmy or hyper or even hitting over all these naps" we often say...

But then we have a day like today and I was BEGGING for a nap...which makes me feel guilty...  I was obviously not wishing a seizure of course... but a good old fashioned nap would've made the day a bit more manageable / broken the day up a bit.

So why was the day so torturous?

Kyle was just out of sorts all day and acting like a big old jerk. 

I didn't say he was a jerk but his behavior today was just jerky.  A big old jerk.  I know...maybe he couldn't help it...maybe something was bothering him and he couldn't tell us...but all in all it was still jerky behavior... I'm allowed to say that damn it!  LOL


So here's how it all went down...

Wifey wanted to get out and get an early start today. So we went out to breakfast at 9:30am. 

She wanted a brunch-y type place so went to this kinda fancy place that we've been to before on date nights without the king. It's in kind of an affluent area. 

But it was brunch-y. It had outdoor seating and the weather was beautiful. 

Well we spread more awareness today than we have in a LONG time. 

Kyle was just awful in the restaurant. Just really bad behavior. So while we were waiting for our food I broke out some popcorn to hold him over. 

The popcorn finally mellowed him out. In fact he got so mellow and relaxed munching away on popcorn and reading his book that he peed right there in his seat. 

Thank god we were sitting outside and the seats were metal and had holes in them...but regardless there was a man size puddle underneath his seat. 

My wife and I just FROZE. That hasn't happened in a restaurant in a few years. We almost forgot what to do. And then it all came back to me. 

ME:  "Does he have extra clothes in the minivan?"

WIFEY:  "Yep"

ME: "I got this."

So I brought my 5 foot tall, 11 year old son out to the parking lot, wrapped a towel around him and redressed him in whatever I could find. He had an appropriate pair of pants in there but no underwear. So I put him in a bathing suit, a pair of pants, a new pair of socks and put the slightly urine soaked sneakers back on him and back in we went. 

While I was gone wifey had to decide whether to tell them. She did and they cleaned the puddle and his chair as best as they could. Again thank god we were sitting outside. 

And we tried to return to our breakfast. I honestly thought that once his food arrived he would rally and enjoy the food and we would all get thru the meal. 

But he just didn't want to be there. Didn't want to eat their delicious chocolate chip pancakes and bacon. So he made it be known by being non verbally verbally loud. And by starting to throw his books. 

Around this time, the hostess / owner (?) came over with a post it note and said the woman who was sitting next to us who just left paid for our meal and left this note. 



Yep that happened. The note reads...

"Have a wonderful day.  I commend u and your patience.  You and your family made me appreciate my day.  Erka"

And wifey almost starting crying. She said "it's almost easier when people are a--holes, but when they're really nice like that it gets to me"

And I don't want this post to get derailed by any negativity about what what the note says.  I'm fine with what she wrote. 


I also don't think a nice gesture like this needs to "go viral" and be shared around the world.  

Basically a lady did a nice thing and that's it.  She paid for a meal of the people sitting next to her who were having a rough day. Plain & simple.   And we appreciated it.

Anyway...

After that we took turns. Wifey took the king to the car while I scarfed down my breakfast in peace. And then I took over and she finished her breakfast. And she left them a HUGE tip. 

Once we were all back in the car Kyle happily munched on popcorn and watched his sesame DVD without a care in the world. And the wife and I weren't crazy upset or angry we were more like shell shocked. 

ME:  "It'll be a long time before we go back to that place."

HER:  "yeah we'll definitely leave it for a you & me date night place from now on."

ME:  "although we could make a habit of this. go to fancy restaurants in affluent areas and send Kyle in with a full bladder and get a free meal out of it."

And we both burst out laughing. 

After that we went to a waterfront park near there to let Kyle look at the water cuz he likes that. And that was ok and enjoyable for a very short while


until it wasn't anymore...  :-( 

And then we went to Trader Joe's supermarket. And I gave Kyle the choice of staying in the car with me and watching his videos and mommy shops or we all go in... and he tried to open the car door so to me that meant he wanted to go in. 

And he was ok in the store for a few minutes. He saw Veggie Chips on the shelf there and indicated that he wanted them (which was great). So I handed him one at a time as we shopped. 

Then, in his mind, he was done eating veggie chips & food shopping. And he indicated this by hitting me. So he and I quickly went out to the car (me gently holding him by the wrists as we exited so he wouldn't swing at a stranger) while wifey finished up shopping.

As i sat in the driver's seat in the minivan getting hit in the shoulder by the king a few times I looked at the clock and it was only 1:08pm and I couldn't f--king believe it.  This day wasn't even close to being over...

And then we went home. It was probably only about 1:30pm when we got home. And it was obvious that neither one of us wanted to hang out with Kyle. 

Wifey excused herself to "do laundry" and a half hour later i left to clean out and vacuum out the minivan and to go to home depot to get a hose winder upper thingie for the backyard. 

I'm not a handy guy and I actually hate Home Depot so the fact that I went there just shows how much I wanted out of our crazy house.

As I was leaving Home Depot after about 45 minutes of browsing / stalling / taking my sweet ass time wifey and I had the following text exchange. 


After I got home we all went in the backyard so I could put together and install the hose winder upper thingie.  

And back there he was holding his breath like a madman while occasionally taking his pecker out all while the neighbors behind us were having a Memorial Day BBQ. 

So basically the whole day was torturous...all the way until he fell asleep at around 8:20pm.

And after a 4 day weekend for me I am exhausted. And I can't wait to get back to work.

And Kyle had a 4 day weekend and probably can't wait to get back to school and get away from his jerky parents. 

And I'm sure wifey is looking forward to tomorrow to get rid of both of us. 

Anyway, I think I'm done with this post.  I think it's time to go inside and watch tv with the wifey...

And as I'm writing all this down it doesn't seem all that bad and I'm probably coming off as a big selfish jerk...but what can i say...I guess after my 11 year old peed his pants at a restaurant and someone paid our bill out of pity the whole day was downhill from there for me...

:-)

Anyway, hope you all had a better day!

Goodnight all!

THE END


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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Sunday, May 11, 2014

Mother's Day 2014: A Few Ups & A Huge Down

The Ups & Downs of an Autism & Epilepsy Life...


Today is Sunday May 11th.

It is Mother's Day. It is also the day before Kyle's 11th birthday.

The plan for the day was for us to have a bunch of family over for brunch to celebrate the moms and to celebrate the king's birth.

But the day started out with an unexpected unwelcome old nemesis.

At about 4am this morning Kyle burst into our bedroom and jumped in to our bed and went right back to sleep.

He hasn't done that in a while so I didn't force him back to his bed like I sometimes do when he's in a pattern of doing that a few nights in a row.

It's a good thing i didn't because at about 7am Kyle had quite a seizure. The worst, longest one he's ever had. It lasted close to 3 minutes. 3 minutes of him lying there with his eyes rolled back and breathing strangely.  The VNS Magnet didn't really stop / shorten it.

It was long enough that we almost gave him this strong, emergency anti-seizure med that we have on hand for seizures lasting longer than 3 minutes. It is a rectal medication meant for these "breakthrough seizures" and it is supposed to stop them cold.

But as wifey was reading the directions and preparing to give it he came out of it.

But the whole thing was scary. It was a return to Seizure Street in a big way and we haven't seen any of these type of seizures (of any length) in months.

The ones he usually has these days are quite pleasant actually. He gets a weird smile on his face and looks a little tipsy for 15 seconds or so and then he usually snaps out of it.

But this mornings was the real deal. Long, scary looking, and towards the end he peed himself.

So needless to say we were on edge...but we didn't change our plans.  We figured if we're not taking him to the emergency room then why not have the celebration.  He'd probably enjoy seeing everyone in his own way and with more people here their would be more eyes on him anyway.

So from 7:03am til 11:30am one of us stayed with him while the other one got the house ready for company.

And so then 11 people came over for brunch and birthday cake.

We had a full house from about 11:30am - 3:00pm and Kyle had an ok time.  He seemed his usual, crazy, breath holding, happy to see everyone but not necessarily be in thee same room with them self.

And no other seizures that we saw.  And while we told our siblings about that morning's scary seizure activity.  We kept it from our folks cuz we didn't want them to worry.

Anyway, everyone had a nice time with coffee, buns, rolls, fruit, bagels, donuts, quiche, etc and Kyle got some cool stuff for his birthday....clothes, shoes, etc... 

Plus a sand/water table for the backyard from his aunt and a bunch of Sesame wall decals from wifey and me for his playroom wall.  



And obviously these were his 2 favorite gifts.

Yes he may be turning 11 but he'll probably be a toddler forever...

:)

Anyway, everyone left at around 3pm and then we set up the sand/water table in the backyard and he had a blast playing with it for over an hour. 



But after saying "don't eat the sand" for the 20th time I decided that he had eaten enough sand so he and I came inside and I gave him a bath while mommy sat in the sun in the backyard for 30+ minutes... her first real break on Mother's Day.

After bath he had dinner, 6 blueberry waffles and 7 pieces of bacon. 

And before we knew it, it was 7:30pm and medicine and melatonin time.

It is now 9:39pm and I'm writing this in Kyle's room so I can watch him sleep.  Whenever he has a big seizure or a big cluster of little seizures we go thru a phase where we feel like we need to watch him 24/7... but usually within a few days he's back to normal...(knock on wood)

And 9:45pm and he just had another one in his sleep as I'm writing this...lasted about 60 seconds...son of a bitch...

Anyway, that was (is) our crazy Mother's Day. 

Tomorrow is Monday May 12th and the beginning of what is bound to be a busy week starting with Kyle's birthday and ending with his IEP meeting on Friday with probably lots of calls (and probably appointments) with Kyle's neurologists thrown in between.

Anyway, hope y'all had a good Mother's Day and have a great week coming up!

Autism Daddy out!

THE END

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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!





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