Saturday, February 15, 2014

My Page Is Too Happy You Say? Well Let Me Tell You Some Excruciating Stuff aka My Kryptonite




(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...


Twice this week I got comments that my page was painting things in too rosy a picture.


Earlier this week I posted a pic of my desk at work and wrote how happy I was to be back at work after a snow day stuck at home with Kyle and wifey ... and an autism dad named Jimmy commented saying things like... "this page is not realistic...  You're sugar coating things... you are in denial... my asd son is 30 and it gets harder... beware of what's ahead...ete, etc, etc..."


I can't copy exactly what he wrote cuz he ended up deleting all his comments...

Then today I posted this pic of Kyle leaving a popcorn trail at Trader Joe's supermarket...





And in between all the funny typical comments from y'all was this one...

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.

And then I thought... my blog painting too rosy a picture?  being too unrealistic?...My page?!  My blog?!  I pride myself on being the blog where anything goes...nothing is off limits... poop, pee, meds, playing with one's "junk"... I pride myself in showing it all, the good the bad, and the ugly...

But maybe I am?  Or maybe I'm showing too much of the positive part of our lives lately?  And not enough of the negatives or the craziness?  which there is still plenty of... trust me

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...

And there's one part of our lives with the king that I rarely write about...I'm not sure exactly why...maybe ciz it's hard to explain it well...but it is the most excruciating...and it is Autism Daddy's kryptonite...it can bring me to my knees...

Here I'll tell you more about it...

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...

when stims come and go and other behaviors come and go, the breath holding has been a constant... 

he protrudes his belly out as far as he can and holds his breath for as long as he can... And many times he also pushes one hand against his neck / jugular while doing it...

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?

why does he do it?  Who knows...maybe he's getting a bit of a high or a rush from doing it...


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...

I saw the moment. I snapped the pic. It wasn't a happy moment. It was just a real moment.

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...

And Kyle was holding his breath all day long. And on some days like today it's like fingernails on a blackboard to me. 

And some days I'll say to the wife "is it worse today? or is it just me?  some days the breath holding doesn't get to me, but today...it's crazier today right?"

And she'll be like "it's a little worse today...but it's mostly you..."

And then I'll need to self reflect "why is it bothering me more today?"  

Some days I can figure it out. Some days I can't but it just is. 

So when we FINALLY got home and the manic breath holding continued I went to take a nap. 

I gotta say that the way I felt today and the fact that I worked myself into such a tizzy that I needed an afternoon nap...  I used to feel like that ALL THE TIME before I went on my antidepressants 4 years ago (which I've previously written about here)...  I've gotten a lot better but today was one of those days where I had to remove myself for the situation for my survival. 

I took about a 2 hour nap, then wifey came up and said she wanted  to go to a 3pm yoga class...so I was back on duty. 

And for the 90 minutes she was gone the breath holding was driving me crazy again...  Don't get me wrong. He's still Kyle when he's holding his breath. Still happy and watching tv and puttering around but today was one of those days where I couldn't take it anymore. 

Some days I just make him a bag of popcorn cuz during those 30 minutes the breath holding sounds are replaced by munching sounds and "yum yum" sounds. He's still holding his breath but it's less manic when he's munching away...

And that's what I did while wifey was at yoga. I made him a bag of popcorn and a cup of chocolate milk and snapped this pic and put it up on my FB page...



And during those 30 minutes I'm totally fine.  He's happy and content and then so am I.  I've said before that I live and die by his moods and his behaviors and it's brutally true...

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





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. 

And maybe I do paint too rosy a picture some times. Now that you know this side of the story I guess that both those  pictures I posted today didn't tell the whole story and maybe painted things in too positive a light...

...but sometimes me posting positive things is my way of trying to see the positive or the funny in a crappy situation...sometimes I write some thing positive to make myself feel better...

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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  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!!




57 comments:

  1. 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.

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    1. Perfect comment.

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    2. 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.

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  2. 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.

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  3. 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.

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    1. Darn. My phone auto corrected. I meant that your blog gives me hope. And the wrist grab was just last night.

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  4. 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!!

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  5. facebook,,,your own blog,,,,,you don't have to justify anything... keep blogging...youre doing the world a wonderful service....

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  6. 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!

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  7. 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.

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  8. I think his breath holding is him stimming!

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    1. 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!

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  9. 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!

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  10. 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 :)

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  11. Feeling pretty peed off at this posting. With 47,000 followers there will always be one who may not like a posting. As you have so rightly pointed out, this is YOUR blog and therefore you choose what you write. In the complicated world that is Autism so what if you post mainly "positive" stuff one day. Some days can be better than others. Some days can be downright shitty and you cover the spectrum. Your not here ro please us but I will tell you this, right here right now, I have had some pretty shitty days of late and your postings have made me smile. A smile because I get it, a smile because its funny (I may be referring to singing *cough*) a smile because someone else goes through what my day can be like. AD dont ever change. Keep on doing what your doing. Love and snogs to your whole family from Wales x

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    1. I agree with Jo from Wales. A lot of people don't realise that our ways for coping with all of it are our basic survival skills. Your blog allows me the opportunity to relish in a global community that reminds me that we are all in the same shitty fucking boat together, regardless if we are in nyc, wales, or western australia. Your blog gives me perspective, and at times, strength.

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  12. For me personally after reading all the post of the day you can read between the lines. You just put a humorous twist to it. When you live the way we do you just get use to the craziness of our lives. So much that if you dont get use to it you will go crazy yourself. My son will do stuff and most of the time it doesnt bother me at all but every once in awhile it gets to me.

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  13. As a parent of a typical asd child, we see the good in every day. My oldest son is being an angel lately and the house is calm. If we always thought about the negatives all the time we would go mad. There is always something happening like, he isn't eating food......only crisps and biscuits.....which would probably freak another parent out....but as you've said before.....pick your battles and if you know that you aren't gonna win why cause chaos? I love your page. It highlights the really bad times but also the great fun and joy we encounter. If you can't find the fun in life then we're all screwed xxxxxx

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  14. I totally understand about writing about the positive and skipping the shitty parts. I write about my 6 year old on my blog too and for me it is about feeling better and release and sometimes I don't want to relive all the shit parts of the day. Breath holding has to be excruciating. I'm glad you are able to find the positive points in a stressful day. How else are we, as parents, supposed to get through the rough spots without it? Keep writing however the hell you want to. :)

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  15. I have belonged to several support groups for kids with all kinds of special needs and the ones I enjoyed the most where those in which we told stories that made us laugh--stories that would horrify parents of healthy, typical kids. But we can all see the insanity, we all share the same experience of, say, you walking behind Kyle in Trader Joe's, and we all get it. It's similar to gallows humor, I suppose, but if we're not laughing, we would be in fetal positions crying on the couch. You are not too rosy--you point out the million challenges you and your wife face, but your perspective always reflects the depth of your love for your son, and that is why I read your blog. Please don't change a thing.

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  16. I can appreciate all of your posts. But I need help understanding the fact that people are bothered by your positive views. Are we not taught to concentrate on the positive things in life? If you concentrated on the challenges, struggles, and negative aspects people would still have something to say. I commend you for sharing the positive, taking pics and sharing the positive of a challenging situation. Thats what a parent is suppose to do! If we consume ourselves with nothing but negative thoughts and troubles we would become bitter people! So I say - keep on posting the positive, you aren't painting a rosy picture, you are making the best of a difficult challenging situation and not everyone wants to go around with a chip on their shoulder like some parents tend to do! You have to make the best of this, and thats exactly what you are doing! Keep up the good work!

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  17. Being the parent of a child with autism (or any special need or health problem) can be tough. Sometimes misery loves company and when you're not sounding miserable those who need to commiserate will feel alone. They are criticizing you (unjustly) because they feel low...and alone. Your ability to see the positive is a precious gift. It will certainly help your son---and it is helping your readers. You keep being you...even when you get complaints...know that it is good medicine for the ones who have a difficult time staying positive.

    Cindy
    ps. I always recommend autism coach (web site). I started adding some very inexpensive digestive enzymes to my son's diet, more than 10 years ago, and his stimming behaviors mostly faded. There are no guarantees. This is not considered a cure. Every child is different. But I believe in the connection between the digestive system and the development of the brain. I have no affiliation with the site except as a customer. Best wishes

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  18. It is the whole 'if you don't laugh about it, you will cry' feeling that makes me often tell stories about our frustrating days in a light-hearted way to others. Even doing that I often get a reaction of 'how do you cope?' You cope because that is your life and you have to, my 7 year old kid is non-verbal, stimming, flapping, holding five or six things in his hand all the time, developmentally probably about 18 month level - but he is ours and we love him and we cope because he relies on us. I love your page and blogs and have always read them as if they were written how I would tell the story - a bit light hearted but showing to those who live our lives what it is like.

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  19. I post about my son a lot on facebook. I rarely post the excruciating stuff from my day. I always seem to post about the best parts of the day and small victories. It's mostly because I read these things back to myself often and it makes it easier for me to see that there was some good out of the day, despite the tantrums, stims, and the 1000xs of me telling my son to put his pants on. That, and I don't want to seem like a big bag of downers and if I wrote about how my day REALLY went people would think I am miserable (even though I am sometimes).

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  20. U HAVE to be positive in situations like this. The pessimistic people just make it terrrrrible. I can't walk into a grocery store without someone telling me to "just give him a spanking that will fix it." Woooooahhhhh. I'm new to this Autism thing and I'm extremely defensive. And for a lack of better words, I can't walk into a grocery store without telling someone off or wanting to repeatedly punch them in the face. Ppl are so rude and so uneducated about ASD. Its disheartening how people think that an "ass whooping" or "spanking" with fix this "problem." Sorry had to vent

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  21. I totally get that theres different sides to your pictures and I love your page and blogs because of their honesty. Please just keep going the way your going as your page always gives me a smile its good to know your not alone with some of the feelings that we have or our mini mans behaviour xx

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  22. Did you ever try to tickle him out of his breath holding?

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  23. I love reading your things and watching the live chat you tried. I try to look at the positive and I am a bit of a smart ass. I get it.

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  24. We should/need to look for the positives in our kids and our lives on the spectrum. It makes us feel better and helps us cope. Also allow us to see and reinforce positive behaviors when they occur. That translates into making our kids happy. Making my son happy helps me with overcoming the sadness of knowing the disadvantages and limitations that his disability imposes on the quality of his life now and in the future.

    Thank you Autism Daddy for your posts and stay positive. Your a good Dad!

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  25. In the end, at least in my opinion, it does not matter if someone else thinks your life is too rosy, because lets face it, that other person is not there every day, and you are.

    I find normal a bit of a odd word.. who decides what is normal? For one its working daily, for someone else its taking care of a family.

    What i try to say is, that it is your life, and its up to you to decde what to share of it.

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  26. I think your page IS HONEST....and its YOUR PAGE...first and foremost...lol. I have days where I am TOTALLY washed out from watching my ANGEL...but the FACT that she is JOYFUL and HAPPY most of the time...makes it SO HARD to stay mad at her. EVEN if she just flooded the front hall because she was playing with plastic fish in the sink and forgot to cut the sink off. Do you think I was on cloud 9 that she flooded the hallway and that I got the shampooer out for the next 2 days trying to unsoak my carpet only to have it mold anyway....and I had to rip it up anyway after 3 days of trying to put fans on it. NO you don't. Can I view my life like FOREST GUMP and still see the good in my day in a life with special needs. I certainly can. I am thinking that guy may have had a bad day...and your page was just the last straw at the time...but once he cooled off he tried to erase his comments. I have had those days where I realize I went off in a foul mood and then later was like WHY did I write that in the HEAT of the moment...and I go back and erase them. It's all good...but it is YOUR PAGE...and YOUR OUTLET for YOUR LIFE -- not theirs. That's the way I feel about my FB. thanks for all you share...I LOVE IT...even when I don't agree...I know thats your view and the way YOU FEEL....thats all I can ask for.

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  27. Bravo to you and your posts. Autism is awful. Your outlook is our and honest. You have a great writing style and I think that anyone who reads your blog and deals with autism, knows there is much between the lines. That doesn't mean you have spell it out. You have a great attitude. Thank you for sharing.

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  28. AD~ you do not have to apologize, for your blog is YOUR story. We all know that autism presents many faces and none of us have the same experiences. What your blog does (for me at least) is let me know I'm not alone, my son isn't hte only one with bothersome behaviors. While it's true for my family that things got rough with the onset of puberty (LOTS of aggression), that may not be your experience, and I can't begrudge you that. We're all in this together, and no one should criticize anyone else for sharing their story. I personally love your sarcastic/sardonic look at life with the King.

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  29. Would as many people read if you weren't so funny, cynical, self-deprecating, and "rosy"? Would so many people enjoy if all of your posts were about how shitty living with autism can be? No. You'd be accused of making living with autism seem like a horrific "sentence" and chastised for it.

    Screw 'em!!!!

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  30. The thing is...the positive and the negative makes a nice balance. I for one never thought that you were painting a rosy picture...you are just being a Dad trying to see some positives in a situation that can be quite frustrating!! I mean noone would want to come here to listen to you whine all the time :) Keep it real...no excuses...and Im not kidding, Im going to get you a gig at the college I speak at ha

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  31. I am in agreement with so many people on here. I appreciate that you attempt to show all sides of the picture. When you post the ugly, it reminds me that I'm not the only parent out there that has reallly bad days with my daughters autism. When you post the good it reminds me to be thankful for even the smallest gains my daughter makes. When you post the normal, well it is nice to be able to take a deep breath and feel like things are normal for a change in my own home. I wouldn't trade my daughter for anything, but I have good days and bad days.

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  32. I like your blog a lot. I relate to the spectrum of what you write about. It's all one big tapestry. Keep up the great work of chronicling the journey. It's a great contribution.
    A TX Wifey

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  33. I think your posts are pretty honest and just because you don't divulge every crappy detail about the ugly doesn't mean you are posting too rosey of a picture. You show boyh sides to your life with Autism in most posts. Its unfortunate that some are unable to see the light in things and would rather focus on the negative. As autism parent our days cna be very unpredictable and many of us struggle to see that light and we look to others to keep us hanging in there, to remind us that when you get to the end of your rope tie a big knot and know we are not alone, and remember the good. I think you do an awesome job of sharing and helping others understand with out sugar coating anything and helping other feel better. And most of us get it, we know it not all roses, we know why you need to tag in the wife and take that break so keep doing what you are doing. We thankyou!

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  34. I love your blog! I just spent an hour cleaning S%%t off the carpet so I totally understand all the stuff you go through! (I wish he had told me he needed to go!)

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  35. Personally, in your "rosy" blogs, all of your blogs, I always feel an underlying sadness through your words. Always. I might be wrong, it`s just the feeling I get. I never miss your stuff and tell my husband all about you. Our king will be 11 in April.

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  36. Awesome! Love this! I feel like if I post something bad I'm criticized for being so negative...but if I post positive then my daughter is "fine" and "seems normal". Can't win! Thanks for sharing!

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  37. I always appreciate when you post, good, bad or ugly. I understand that some my think that you are posting everything in your life, but they should realize you wouldn't be able to work, eat or breathe if you actually did that. I see the "hey, we are doing something normal... out to breakfast and to the store.." but I also heard the "king didn't eat much, and trail of popcorn through the store" knowing from your writings how things are and from having my own son on the spectrum I recognized the "sigh" that said to me, money spent - wasted and frustration inside even if not shown outwardly. I admire how well you and your wife work together.I do not envy you in any way... my son a lot of times gets the " he doesn't seem autistic" comments, because he has made so much progress. I know I am very lucky, but at the same time the people who don't think he seems autistic in their 30 minutes or even a rare day encounter with my son do Not have to spend time at home with him. They don't have to see the constant redirection and corrections just to go in and pay for my gas cause I can't leave him in the car. Asking him not to sword fight or ave imaginary pokemon battles in restaurant has cut down drastically on even a quick fast food snack between therapy sessions. Thank you for your blog. It sometimes makes me laugh ...really hard when i most need it. I am a single mom, my adult daughter used to help me out tremendously, but she moved out last year and has twins of her own now. My other kids (all 7 -14 years older than my ASD son) they are all in school or at work. Only one lives with me full time and this is his senior year of high school. He wants to enjoy it as he is enlisted in the Navy as soon as he graduates he ships out. I try not to ask him to help out for long periods of time because he has homework, regular work, navy training meetings, ROTC and other school stuff. (Plus not so sure he wasn't/isn't on the spectrum himself... long story there just say his dad - my ex would never allow me to get it checked. But he seems to do well enough so time past for that with that son. ) I have times when I have to let one of the other kids walk with or sit with EV so I can distance myself for a few, and some days his behaviors get to me more than others. Again thank you, for letting me know I am not alone. Thank you for posting the blog! Do I laugh at stories of poo smeared walls now - yes, because i'm not the only one! Did I cry for hours when it happened? For that matter when it still happens - EV is gonna be ten in a few days BTW. And it does still happen - mostly in the bathroom so hey it's progress! But can I look back on it and laugh later yes, mostly because of this blog, and the followers comments that show we are all on our journeys with our kids but not alone... and as I aw on Facebook... Autism Sucks! I wouldn't trade my son for anything but I would gladly give his autism to a congressman/senator in a heartbeat! Blog on Autism dad, and sorry bout the ramble.

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  38. I have one thing to say about this. The reason WHY I like your blog is because of its positive vibe. All of us that have children with ASD are not blind to the fact that you have your rough days and struggles just like the rest of us. The day I found your blog I was having the worst day ever (that week) and it made me feel so much better, I have been following it since!

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  39. your blog is maybe the closest most real blog (next to mine of course) I've ever read, and I've read plenty. keep writing what you feel, what you experience. This is for you after all, right?

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  40. It's interesting to me that someone would be so upset that you are painting a "picture" instead of being honest and wouldn't want to follow you anymore? I mean, to each their own I guess. I have never read a more REAL blog. I literally cry at most of your blogs because they are so real and I can't believe some of the things you have to go through and how strong you guys are. My son is a verbal autistic 6 year old boy who I see so many different traits/behaviors that your son has. Your blog is my absolute favorite thing and I've read all your posts/blogs. I enjoy reading the good and bad stories. I pray for your little boy and family all the time and cannot imagine people having nothing but encouragement to say to you and your family. I say, it's your page do and write about what you want and if it makes you feel better/more normal, by all means DO IT! I know I grab onto any moment that makes me feel "normal". Its not an easy road that's for sure. Hats off you to and yours, and as always. I will always pray for you and hope you always write your stories the way you want. I've enjoyed each and everyone.. even if I'm crying after. :)

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  41. Great! It is a survival mechanism for our crazy a&s life! That makes you normal! Don't worry! Be happy! Word up with that!

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  42. If people don't like your blog or Facebook page then let them leave! It's YOUR page and if you want to rant, gloat over silly things, cry or share anything, then so be it. I like it because it's REAL life. Not glossed over about what a blessing our autistic kids are like some blogs. I live in reality, and it makes me feel better than we aren't the only ones who have some bad with the good.

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  43. huh. I think people telling you you're too rosy are a great example of how Autism parents don't have enough support. If we all spent our time focusing on the negative... stims that drive us crazy, poor communication/ eye contact, never ending energy and terrible sleep patters. Poop. Just in general.... we would all end up in the news and I don't mean that in a good way. it's IMPORTANT to focus on the positive. Some days, focusing on the positive is the absolute only thing that let's us hang on to that last wavering shred of sanity! If you can't face Autism and all its foibles with a sense of humor, you've already lost the game. And we can't. We can't lose this one cause these are our kids! So by damn if we have to laugh at them, (No I do not mean WITH them.) And we have to cheer because Junior said a word for the first time it 3 months and we high five cause sure, the diaper was off, but at least there wasn't any poop... this time. Then that is what we will do! And the best thing about blogs like yours... is that when Autistic parents like me read them.... I get REMINDED of that fact. I remember how drop dead hilarious it is when my son walks into the kitchen as I am doing dishes with a tooth brush in one had and a piece of dog shit in the other.... which he is happily munching on. Sure the mommy in me is screaming in horror. But let's face it, that's the kind of comedic gold you just can't make up. Might as well enjoy it while you dry heave. Thanks for doing what you're doing. Means the world to a lot of us out here in the interweb land.

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  44. I have been on many occasions told that I do the same thing on our page. That I sugarcoat it and don't paint a real enough picture. I'll be honest. I am out in the world every chance we get, raising awareness and educating peeps on how very not cute it can be. But OUR page was for us to talk about what we wanted to share and to build friendships with people who get our lives. If I feel I need to vent or share I do. The rest is nobody else's beeswax. Love your page and blog and I like the way you do things. Thanks.

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  45. most days are a laugh or cry situation. I would rather laugh, so things that are not funny to other people (only eating poptarts for the whole damn day, throwing things, peeing on the floor, playing with "junk") I just laugh and say here we go again. Other days I cry and go for a LONG walk. You gotta do what you have to so you can stay sane!

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    1. I'm the exact same way. One day she falls apart and I just pick her up, remove her from the situation, and deal with it as always - using smiles and rational talk to get her thru. The next day exact same thing happens and I just want to cry and hide and complain to someone. It's really hard.

      Incidentally I think the page is great. Don't change a thing.

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  46. I LOVE THIS BLOG! It is your blog be true to yourself! I have systemic Lupus and can relate to how sometimes it may seem like I have the best case of Lupus ever because of my positive post. What people don't realize is they don't want to hear I Feel like poop I hurt I can't move or what ever the carp if the day is regardless I don't have control just as the King has no control he lives LIFE on his terms .You are his voice giving families a glimpse to "normal"a sort of roll with the punches.I think it's ok to just talk about the stuff that was ok with the day and leave out the poop part... I'm just saying
    A

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  47. I love your blog. It sounds crazier than my life some days and easier other days. My son is now 22 years old and is stronger than the Hulk. When in seizure mode we either have lethargic or freaking crazy!! Our newest addition to seizureland is biting. My teenage son and I got the crap bit out of us last week during that darn Super Moon everyone was so excited about. It turned my son into WereHulk. Perhaps a new Marvel Comics superhero/villian is going to come of this. At any rate, keep it up! Some days it's just what I need! Thanks for your honesty and humor. Ifg we can't laugh about Autism and seizures and all that goes with it, we'd all go crazy! ������

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  48. There are so many comments so you may not see this but an old quote we always use...if you don't laugh you'll cry. Humour is so important in our crazy lives. I try now and again to have have an evening with a special friend and drink a glass of wine or 2 we will often end the evening with a little song... Advance warning to sensitive souls but I'm not one anymore..... We sing ....F**k em all .... It's only in our home and no one else can hear but it helps to let off the steam Heehee.... Autism Daddy you are fab. Jo Shafiq

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  49. I don't know if he reading your page becuse your very honest about the good bad an how severe he is

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  50. You don't have to do this. We get it. I know there are great day that bring temporary peace and we ahve learnt as parents to revel in that. Then there are dark, dark days too where we are just surviving.
    Perhaps this particular parent has not come to terms with his reality. And I understand that too. We all take different seats on the autism bus, providing us different views.

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  51. In our family we try to find the humor. If it weren't for the humor of the situation, I would be way strung out on anti-depressants. My son is no where near involved as Kyle is but we even have crappy days and my life depends on his happiness and calmness. Which don't happen often. At 17 he is a very whiney kid. I love your blog because of the humor and if you can't find that then the alternative is unthinkable.

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