One stinkin’ Twizzler. That’s all it took to make me feel like a terrible dad this weekend.
I went to a family-friendly sports-bar type of place on Sunday afternoon with a friend of mine and my oldest son, Benjamin. Ben is coming up on 11. My daughter Ava is 6 and was home with my wife and my friend’s daughters. My 8-1/2-year-old son Jack** was also at home with some helpers we have for him.
** If you’ve never been here before, Jack is severely autistic. He’s the “Jack” in Operation Jack. My hobby is using running to help various causes, primarily fighting autism. And it’s all for him. Together we’re going to make this world a better place. So far, we’re getting there. Lemons => lemonade, you know?
At this restaurant we went to, when they brought us the bill, they brought it with some Twizzlers. Some places bring you mints. This place brought us Twizzlers. I brought one home to give to Ava. Jack doesn’t need the sugar, and we have treats we give him, but I knew Ava would like it so I brought one home.
I left it on the island on the kitchen in between something** that was on there. It was, uh, out of reach. Didn’t want Jack to get it, so having it farther than his arms could reach and at a spot he wouldn’t see was safe. Like you can’t tell where this is going. But keep reading, because you would never imagine the consequences of one little Twizzler.
** I don’t really know what we have in our house other than my laptop and the TV. I’m not very observant. My wife painted a wall a different color last month and waited 10 days before finally telling me after figuring I didn’t notice. So, for argument’s sake, “something” was probably a plant or a candle or a salt shaker or something.
So yeah, he got the Twizzler somehow. He’s sly but we keep a very good eye on him. We’re about thisclose to shadowing his every step, but he got it. Tiff panicked, because she didn’t know if they have gluten in them. Jack is severely allergic to gluten, which goes hand-in-hand with his autism and issues with his leaky gut that we suspect were caused by adverse reactions to Hepatitis B vaccines. But, I digress. According to a quick Google, Twizzlers have gluten. So we instantly gave him a drink of rice milk with a charcoal supplement in there — that helps detox the gluten from him.
We hoped for the best, but he has major meltdowns with the slightest amounts of gluten. Last time, it was from trace amounts from Burger King fries, and he was miserable for close to a week. He feels a lot of pain, and then because of his inability to communicate, he hits himself in the head. We put a padded helmet on him, but sometimes he intentionally hits himself in spots the helmet doesn’t protect him.
So the vicious cycle brings headaches, bruises — you name it. It’s terrible. Unfortunately, a couple of hours later, the meltdowns started. I think Tiff gave him some more charcoal, but I’m not 100% on that. I know she gave him some children’s ibuprofen to help with the headaches from the head-punching.
I don’t know how long this will last, but I hope it goes away quick. I was laying with him last night as he was going to bed and it killed me. He lays there in his bed, drinking the nasty-tasting drinks we have to give him (so yeah, now that I think about it, we gave him a second round of the charcoal). He’s a total trooper and he doesn’t really know why. It’s just life as he knows it, poor little dude.
One stupid Twizzler could set off a vicious cycle that hopefully is done now, but could last well into this week. I’m not going to beat myself up over it, because I truly feel like I was reasonably careful. But now I know I need to step that up.
That’s just life when you have a child who is severely autistic and can’t communicate and has a critical need to stay gluten-free. One Twizzler. One stinkin’ individually-wrapped Twizzler.
Like I wrote last Wednesday, April is over, as is Autism Awareness Month. But while the blue ribbons and blue candles and blue shirts go away, autism never does. Autism awareness is 24x7x365 for us and I guess that if you read my blog, it’ll be year-round for you.
Sorry about the Debbie Downer topic for today … I have some better things to talk about tomorrow! I promise! Make the most out of your Monday!
Jeremy says
Sam, wild night I’m sure! Keep fighting the good fight and know there are hundreds out here supporting you guys!
Jason says
Ugh. I hear you on the one Twizzler. As Noah was growing up, we had to be militant when it came to treats people offered. Sometimes they even knew it had gluten or dairy… but then said, “oh, but it was only a little bit.” Seriously. Charcoal and enzymes became my pocket pills for many years.
PavementRunner says
Althought that post was tough to read, and I’m assuming more difficult to experience, I want to thank you for being so open. Keep running strong. You are a true inspiration. I dread every single shot that my daughter gets… every single one.
Missy says
So sorry to hear that it was a rough night. I hope tomorrow is better.