(originally written & published on February 15, 2014)
Sometimes I have writer’s block and don’t know what to write about on my blog and then other times blog posts fall into my lap from the heavens or from comments from my Autism Daddy Facebook Page readers…
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Then today I posted this pic of Kyle leaving a popcorn trail at Trader Joe’s supermarket…
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The normalcy of ur child has caused me to dislike your page, I can’t watch the happy ness and ease. I know we have our Plights and ur boy is ace. It’s just brings me down coz me and mine aren’t great
Good luck and good bye
So I wrote back saying…
when things are going well this page is kinda “normal” and bouncy and light.
And when things turn to shit which they probably will at some point soon this page gets pretty dark.
Go on the blog and read about the seizures and breath holding and VNS surgery.
As I said in a recent blog post that I can be excruciating to live with… but so can the king… even when things are going relatively “well” our lives can be an absolute excruciating mess…
And then I looked at my FB posts from today… and then i thought about our day today… and yeah my posts told some of the story…but not the whole story…I did leave out some of the crappy stuff…
Take today for example… Saturday…Kyle got up at 6am. He’s been stuck in the house since Wed afternoon with all the snow in the NYC area… and we were due to get more snow Saturday afternoon… so wifey said “let’s get out early, go eat breakfast out, go grocery shopping, and get everything done early…get this kid out of the house…”
Did I want to go? Not really…
Is taking the kid to a restaurant a pleasurable experience… sometimes yes, sometimes it’s ok, other times, like today, it was absolutely excruciating…
He didn’t eat, so I wasted $7 on his food…
He was bouncing up and down in his booth seat and it might have been making the seat of the guy behind him bounce….
He was extremely loud and stimmy in the restaurant…
But the kicker…the kryptonite for me..is he is holding his breath to the extreme…
Aaaah his breath holding…
That’s the one thing that I don’t write about much on this page…(You can read a little more about it here) but it’s been the one constant in the last 5(?) years…
You can get a small taste of what it’s like by checking out this video
But that video doesn’t do it justice… you gotta be in his presence to experience the craziness of it…
now here’s all your questions…
can it harm him? depends on who you ask
did he ever pass out from it? yes maybe 3-4 times about 4 years back…
does it contribute to his seizures? maybe?
The schools and behavior therapists took all sorts of data about it over the years… he holds his breath in all situations… happy, sad, alone, with company… In. Every. Situation. Pretty much from the minute he wakes up til the minute he goes to sleep.
And the fact that he breathes normally in his sleep (along with other medical tests) helped rule out any medical reasons years ago… it is strictly a behavior…
And. It is absolutely excruciating to be around a lot of the time… And in my opinion it’s getting in the way of his learning and progress because it takes up too much brain power…
Think about it. Take a deep breath…push your belly out as far as you can… and hold your breath for as long as you can…
pretty hard to do right? hard to think about anything else right? now think about doing that for every waking minute of the day…while eating, while watching tv, while playing on the ipad…
The schools and behavior therapists came up with different protocols and methods to get him to stop… some of them worked a bit…but like with anything kyle they didn’t stick…
And then there will be a short part of every day…maybe 30 minutes? when he doesn’t do it… and I’m like “this is nice….some thing’s different…” and then I’ll realize I haven’t heard him exhale deeply for 30 minutes…and I haven’t yelled “hands off your neck!” or “breathe!” or “let out that breath!” for 30 minutes straight…
And those 30 minutes of blissful normal breathing? There’s no pattern, or rhyme or reason as to when or why it comes…
Anyway, back to today… Breakfast was rough… Bouncing, stimmy, loud, not eating, and holding his breath like a maniac! And I was not dealing with it well at all! I was ready to go home right after that… But things aren’t gonna be any easier at home… they might actually be rougher… And I’m not embarrassed by anything that happened at the restaurant…nobody seemed that bothered… and if they were f–k them…but it wasn’t enjoyable at all…
So we soldiered on… Next stop was Trader Joe’s supermarket…where I took the pic. Was that a cute moment when I snapped that pic? No. I was walking behind them because sometimes when I’m about to explode in a public place (this time for breath holding & popcorn dropping) I’ll remove myself from the situation… So i stepped back let wifey take the lead and let them go ahead of me so I could cool off a bit…and I helped pick up some of the trail of popcorn…
And we made a few more excruciating stops. Another supermarket and then quick stops at both our folks houses to drop off the essentials (bread, milk, eggs) before the next snowstorm hit…
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But what is great is that the wife and I can both forget about the shitty part of the day in an instant. She gave him a bath around 6pm and then the 3 of us sat in our bed all cuddly for 30 minutes while we watched “Jack’s Big Music Show” and he was all smiles (still holding his breath mind you, but I was dealing with it better for some reason…) and then the stress of the day disappears for those 30 minutes…
And then an hour later the craziness comes back a bit when I posted this on FB
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That’s about it I guess. I guess I just wanted to tell this story to show y’all that even when things are going good in our world they are still pretty insane.
i started my Autism Daddy page as a place for me to vent to make myself feel better, feel more normal…and along the way I’ve picked up 47,000 people…and many of you tell me that hearing about my crazy normalcy makes you feel less alone / more normal…which is great…
…but this is still my page and now you know my secret…that sometimes I’m gonna fib a bit…and make things seem a bit rosier than they are…just to make myself feel normal cuz isn’t that what Facebook is all about anyway? People putting up only the best of themselves…?
🙂
That is all. Over and out…
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View Comments
I'm sorry that anyone had the audacity to say that you paint things incorrectly or too positively. You can't please everyone, if you posted all the emotions, all the negative thoughts you'd get called out for that. I have days like this too, where I realize that some of the behaviors are not that much worse that day, just me. It's a constant roller coaster and no one has the right to tell you how you should describe the ride.
Perfect comment.
I totally agree. I can read through the so called rosiness because A. Autism Daddy isn't really a sugar coated kind of blog IMHO B. I live a similar lifestyle and I know that a times you keeping it light is ok and keeping the rage in check is helpful to those of us who act like out of control beasts many a day.
I totally get it. I saw the popcorn picture and I knew exactly that feeling, as I have been the one picking up the trails. For us it isn't breath holding but self injurious biting, high pitched noises, and angst about upcoming plans, so asking over and over and over and over and over if we are going to WalMart to buy crayons tomorrow. I'm like you, some days I can tune it out and smile and some days I have to duck out and scream - and some days I can't duck out so I lock myself in the bathroom and play Ruzzle on my phone until I can think straight.
Wow. The breath holding would really bother me. Until you mentioned it I hadn't realized that things sounded upbeat. Your big gives me hope. And even with the crap it still does.
My verbal classically autistic son screamed in my face and my husband face last night. It was bad.
At one point he grabbed my wrist and squeezed it and twisted it. Now he's 5'6" and 225. I haven't written about it and didn't even tell my husband until just now.
For me I feel bad about posting stuff that's so powerfully negative. thank you for this post. It's helped me.
Darn. My phone auto corrected. I meant that your blog gives me hope. And the wrist grab was just last night.
I enjoy reading your posts and they are as real as they can be. Sounds like that person who criticized your post is an unhappy person and that's understandable too......just keep on keepin' on AD!!
facebook,,,your own blog,,,,,you don't have to justify anything... keep blogging...youre doing the world a wonderful service....
Your page doesn't seem too rosy to me, because I live the same kind of life. I can read between the lines. If we are honest about the bad stuff all the time out happens and we don't learn to block some of it out, we'll go nuts. For me, its the constant teeth grinding and squeezing of my arms. He means it for affection, like a miniature hug. But after 14 straight hours of it each day, I feel like I'm losing my mind. Keep up what you're doing. Its why I follow your page in the first place. I don't have to agree with you all the time. I just have to relate. And believe me, we do!
I have been reading your blog for a while now. When I first found it, I found myself reading and reading your posts from before. I love it! Every child with Autism is different. If everything was going great all the time, it doesn't make you any different from all of us autism parents. Our children have autism. We all have that in common. We all worry about their future and if they are happy or sad. We all have different struggles.
I remember reading a while back about a post that said something about parents wouldn't change a thing about their child. I said that in a video I made and put it on you tube ( landen and autism) but I thought about it. Is that how I really feel? Or is it because I'm trying to make myself feel better about something I actually can't change ? I thought about it long and hard. I would cure autism if I could. What I'm trying to say is that we all do this. Trying to make ourselves feel a little better because there are some things we have no control over.
I think his breath holding is him stimming!
I agree, another form of stimming. And stimming is a coping mechanism. Even if it's not it's certainly a compulsive behavior he can hardly control. I wonder if it could be replaced by something else? I feel your pain Autism Daddy and it sounds like you have a wonderful give and take relationship with your wife to survive!
As you say it is YOUR page. An escape for a while. I think your doing an amazing job. Autism parents are not given the credit they deserve. You have a life sentence that a lot of people could not handle and I salute you and all other parents that have a daily struggle to try and give their child the best possible life. Autism is shit. Fact. People that say they wouldn't take away the autism from their child make me angry. Why would you want your child to go through what they do everyday?! Keep up the great work. Its lovely to hear a father share his thoughts and tough if others don't like it, don't read it!
You shouldn't ever feel the need to have to explain yourself because of a comment. We parents have to do whatever we need to just to get by everyday. So what if you paint to nice if a picture on your blog, it doesn't upset me that your life seems easier sometimes...it actually gives me hope that maybe I will be able to look at your type of situations with a lighter heart. I love your blog...it's real and blatantly honest and I LOVE IT! Please don't ever feel like you need to focus on the darker parts of autism just to explain yourself to somebody else. You have plenty of followers who are engulfed in your posts no matter how "easy" they seem :) thank you for helping me through some really tough times and for making me laugh :)