Before I turn this over to Sam, I did train this morning. A pretty tough gym workout, especially considering how sore I was from Monday's workout. Looking forward to a hard swim workout tomorrow! And one more thing, also in Sam's honor, I had lunch at Five Guys, the closest thing we have to In-and-Out. Think I'll blog about nutrition soon!
Okay, here is the blog you'll find today on http://www.operationjack.org/
After Autism Awareness Month, Autism Still Sucks
Long time no write! I’m glad I remembered my password to get in here. Last time I blogged was in December, the day after the second-annual Operation Jack Marathon. I thought I was going to write a follow-up blog the next day. Yeah, maybe not.
Quick standard disclaimer, if you’ve never been here: I’m an ordinary guy, married father of three, and I go to work every day. My claim to fame is that I was the state math champion in the 6th grade. I also ran 61 marathons in 2010 to raise money for Train 4 Autism, because my middle child (8-year-old Jack) is severely autistic and there is nothing I wouldn’t do to take lemons and make lemonade.
In all fairness, I’ve been a little busy since then. Something about getting a new job and relocating my family to the Denver/Boulder, Colorado area. I started a new job here on March 1. But I got here three weeks before my wife and kids did, so I had to do everything I could in a hurry to prep for the move before driving out from California. Then, I spent three weeks trying to get settled in.*
* Getting settled in: I slept on an air mattress, ate oatmeal and frozen burritos and pirated wi-fi off a neighbor from my vacant house. No TV, no vegetables and no furniture other than two bar stools.
It’s been a bit of a transition for us, but we’re getting used to our new home/school/job/routine/etc. and I felt like finally blogging again after what we went through yesterday. I miss sitting here on the couch typing away while my wife watches terrible TV shows (I dumb be getter by background hearing Real New Jersey something Housewives). Maybe this will get me kickstarted into blogging again? Or maybe nobody cares, not even my mom!
Anyways, now that April is gone and Autism Awareness Month is over and everybody is putting their blue candles away, I felt like posting something about how autism still sucks, as evidenced by what we did to ring in May.
I wasn’t looking forward to everything, because I knew it wouldn’t be easy, but on Monday night I came home from a softball game at about 9:40 and it broke my heart to see him sitting there watching a movie and eating popcorn. Not only did he have no idea what was coming, but he should have been comfortable up in his bed, getting some sleep. Instead, we had to wreak havoc on his body clock for his own good.
He was a trooper, as was Tiff, staying up waaay past me. And they both got up waaaay before me. Tiff wanted to be up with him when he went to sleep and when he woke up, and will be the first to tell you that if I have to go to work, there’s no sense in us both being super-exhausted and tired.
Anyhow, we took him in to Children’s Hospital here and everything was fine. And then we went back into the room. I had to physically hold his head in place while the EEG tech put 25 little electrodes on his head, plus a couple on his chest. Tiff had to straddle him and hold his arms and legs down. I would say he was upset, but that would be an understatement. He had a look of fear in his eyes that will stick in my mind and make me lose sleep.
Because of the severity of his autism, we can’t communicate to him that we’re actually helping him. We told him “Mommy help head … Daddy help head … ” over and over, but it was no use. He was crying so much, his ears were filling with tears. I looked down and couldn’t help but think to myself how unfair his existence is. Now, I know, plenty of kids have it worse than him. But here he is, 8 years old, through no fault of his own going through this.
He should have been at school, out on the playground, playing basketball and talking to his friends. But this was his existence, Children’s Hospital, some EEG room three hallways back, his parents physically restraining him while a stranger stuck things on his head. He had no clue what was going on and couldn’t say a thing about it to us. All he could do is cry. And as Tiff always says, he cries every day — way too much for a kid his age.
Once all the electrodes were on and they wrapped up his head, he calmed down about 10 minutes into the procedure. Tiff stayed up there on table with him to keep him comfortable. They collected enough data to make the procedure worthwhile and we’ll find out more within about a week. So, it was a success, I guess. A deeply upsetting, traumatic experience for the three of us, but a success for all intents and purposes.
It just kills me that we go through this. Well, that he goes through this. Unpredictability and sadness come with the territory when you choose to be a parent. One thing I want to add is that when it was all done, he started to get happy and giggly. You’d really have to know him and Tiff to understand, but I sat there and watched as he looked at her. She has become such an incredible mom since I met her 17 years ago when she was an 18-year-old hottie who caught my eye. It just blows my mind what she’s turned into. My kids are blessed to have her, there’s no doubt about that.
The thing, though, was the way he looked at her. I can see his unconditional comfort and confidence and trust in her and it’s beyond words to me. He needs some comfort in the cruel world he lives in and he gets it from her. To be able to stand four feet away and see that is priceless, something that makes parenthood and marriage worth all the gray hair I’m getting.
Anyways, that’s all I’ve got for today. I’m still running and doing charity things and I’ll try to touch on those in my next post … hopefully tomorrow? Can I actually make a habit out of this?
Thanks for reading and have a great Wednesday!
Quick standard disclaimer, if you’ve never been here: I’m an ordinary guy, married father of three, and I go to work every day. My claim to fame is that I was the state math champion in the 6th grade. I also ran 61 marathons in 2010 to raise money for Train 4 Autism, because my middle child (8-year-old Jack) is severely autistic and there is nothing I wouldn’t do to take lemons and make lemonade.
In all fairness, I’ve been a little busy since then. Something about getting a new job and relocating my family to the Denver/Boulder, Colorado area. I started a new job here on March 1. But I got here three weeks before my wife and kids did, so I had to do everything I could in a hurry to prep for the move before driving out from California. Then, I spent three weeks trying to get settled in.*
* Getting settled in: I slept on an air mattress, ate oatmeal and frozen burritos and pirated wi-fi off a neighbor from my vacant house. No TV, no vegetables and no furniture other than two bar stools.
It’s been a bit of a transition for us, but we’re getting used to our new home/school/job/routine/etc. and I felt like finally blogging again after what we went through yesterday. I miss sitting here on the couch typing away while my wife watches terrible TV shows (I dumb be getter by background hearing Real New Jersey something Housewives). Maybe this will get me kickstarted into blogging again? Or maybe nobody cares, not even my mom!
Anyways, now that April is gone and Autism Awareness Month is over and everybody is putting their blue candles away, I felt like posting something about how autism still sucks, as evidenced by what we did to ring in May.
Yesterday: Traumatic x 1,000
We set up an appointment to get Jack an EEG. There’s a chance he’s having seizures and that’s something we need to get checked out. So, we had an appointment for yesterday morning. To prep Jack, we needed to bring him in as sleepy as possible, per our doctor’s instructions. Tiff texted me during the day and told me that we had to keep him up until midnight and wake him up at 4 a.m. On paper (well, on phone screen), that seemed like something we could do and we’d just deal with it. The way we did it was to throw him off his routine by feeding him meals late, bathing him late, keeping the house bright and throwing a movie party for him.I wasn’t looking forward to everything, because I knew it wouldn’t be easy, but on Monday night I came home from a softball game at about 9:40 and it broke my heart to see him sitting there watching a movie and eating popcorn. Not only did he have no idea what was coming, but he should have been comfortable up in his bed, getting some sleep. Instead, we had to wreak havoc on his body clock for his own good.
He was a trooper, as was Tiff, staying up waaay past me. And they both got up waaaay before me. Tiff wanted to be up with him when he went to sleep and when he woke up, and will be the first to tell you that if I have to go to work, there’s no sense in us both being super-exhausted and tired.
Anyhow, we took him in to Children’s Hospital here and everything was fine. And then we went back into the room. I had to physically hold his head in place while the EEG tech put 25 little electrodes on his head, plus a couple on his chest. Tiff had to straddle him and hold his arms and legs down. I would say he was upset, but that would be an understatement. He had a look of fear in his eyes that will stick in my mind and make me lose sleep.
Because of the severity of his autism, we can’t communicate to him that we’re actually helping him. We told him “Mommy help head … Daddy help head … ” over and over, but it was no use. He was crying so much, his ears were filling with tears. I looked down and couldn’t help but think to myself how unfair his existence is. Now, I know, plenty of kids have it worse than him. But here he is, 8 years old, through no fault of his own going through this.
Ahhh, Mommy ...
Once all the electrodes were on and they wrapped up his head, he calmed down about 10 minutes into the procedure. Tiff stayed up there on table with him to keep him comfortable. They collected enough data to make the procedure worthwhile and we’ll find out more within about a week. So, it was a success, I guess. A deeply upsetting, traumatic experience for the three of us, but a success for all intents and purposes.
It just kills me that we go through this. Well, that he goes through this. Unpredictability and sadness come with the territory when you choose to be a parent. One thing I want to add is that when it was all done, he started to get happy and giggly. You’d really have to know him and Tiff to understand, but I sat there and watched as he looked at her. She has become such an incredible mom since I met her 17 years ago when she was an 18-year-old hottie who caught my eye. It just blows my mind what she’s turned into. My kids are blessed to have her, there’s no doubt about that.
The thing, though, was the way he looked at her. I can see his unconditional comfort and confidence and trust in her and it’s beyond words to me. He needs some comfort in the cruel world he lives in and he gets it from her. To be able to stand four feet away and see that is priceless, something that makes parenthood and marriage worth all the gray hair I’m getting.
Anyways, that’s all I’ve got for today. I’m still running and doing charity things and I’ll try to touch on those in my next post … hopefully tomorrow? Can I actually make a habit out of this?
Thanks for reading and have a great Wednesday!
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