The Autism Daddy Origin Story :-)
October 18, 2011
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Now Reading: The Autism Daddy Origin Story :-)
October 18, 2011
(originally published in October 2011 on the 6 month anniversary of my FB page)
It was in mid October 2010 that I was feeling down in the dumps and frustrated. And good ol’ Facebook just wasn’t keeping me as entertained as it did for the first 2 years on was on there. I was frustrated and a little depressed about Kyle and our lifestyle, and I went around my house and snapped pictures of how our lives are different than the typical family. I took 11 pictures and put them up on my regular Facebook page in an album entitled, “Pics Of An Autism Lifestyle”. I hoped that they would be somewhat comical and somewhat eye-opening to our non-autism FB friends and somewhat familiar to our few autism friends who are also on FB. They were up for less than an hour when my wife texted me angrily saying to take them down. When I texted back “why?” I got an angry phone call explaining that those pics were too personal, and we didn’t need EVERYONE in our Facebook lives (grade school friends, HS friends, work friends, etc, etc) knowing that kyle is still in pull-ups, or that he takes senokot each night, or how messy our house is, etc, etc.
I knew she was right, so I took them down, but deep down I knew I wanted someone to see them and to get something out of them. So on October 19, 2010 I started an anonymous Facebook Page called “Severe Autism Dad”. Some guy had beat me to the name “Autism Dad” by less than a week! And I wanted to call the page “Severe Autism Dad” because I wanted people to know where the page was coming from just by seeing the title. I put up the photo album, still called “Pics Of An Autism Lifestyle” and then I never returned to the page for almost 6 months…
Then in mid-April 2011 I was freaking out because Kyle had his first cavity and needed to go in under general anesthesia in a hospital setting and I was getting pre-treatment estimates from his dentist that the whole thing would cost over $2000 out of pocket. I posted questions on the Autism Speaks wall among a few other FB Autism pages seeking advice. And then I thought, I wonder if “Severe Autism Daddy” has any more followers. I checked and the photo album was still there and there was maybe 7-8 people following the page.
On April 16, 2011 I posted something about his dental work. A few days later I changed the name from “Severe Autism Dad” to the much sweeter and cuddlier “Autism Daddy” because I thought nobody would like a page with such a weird/ negative name and the rest is history!!
And then every day since then I’ve posted everything about my life with Kyle. For the first few months even my wife didn’t know about the site. Then one day I didn’t log off properly and she found out. She’s cool with it for the most part, except when my posting & blogging gets in the way of my daddy duties, which she’s right about. That would defeat the purpose of this whole page, if writing about autism got in the way of hanging with my kid with autism, right? 🙂 But here’s a little secret…. my wife is an Autism Daddy fan & follower and very once in a while will post a comment here and there.
Anyway, when I started this page in April 2011, I never knew exactly what I wanted this page to be. I just knew that I could never find an autism FB page where people complained and bitched and moaned about what a raw deal this autism was. I wanted to create a place where complaining was ok, telling people that this all sucks was ok. I’ve always tried to keep it real.
And it’s steadily grown from nobody in mid-October 2010 to 7-8 people in mid-April 2011 to over 1800 people now. 1800 people in so many different countries!! It blows my mind to think that there’s people in UK, Australia, South Africa, etc reading my stories and finding some common ground with some middle aged dad from New york.
And for the most part I am having a BLAST! I’m enjoying ranting and raging to you all. I’m enjoying once in awhile giving some people some real advice (handicap placards for autism) but for the most part making some people laugh and making some people cry. It gives me no greater pleasure when I read somebody comment that they got a chuckle out of something I wrote, or that my page is their favorite autism page, or they are happy that there’s somebody out there going through the same thing that they are going through.
And just like life with Kyle is a roller coaster of ups and downs, highs and lows, so is this page. During the summer of 2011, when Kyle was having multiple meltdowns/ tantrums each day this page got kinda dark. I didn’t have much positive or even humorous stuff to say. A few of you even posted things to the fact of “do you have any good things to say about Kyle?” but that’s just where my life was then.
And now that Kyle is happy in school, and his meds seem to be kicking in and working and now that the potty training is going so well, this page has had more of a positive spin to it. It’s still not mushy or ultra religious cuz that’s not me….
However, I wouldn’t be Autism Daddy if I didn’t admit that there’s some days that you all make me want to cry and/or scream. There’s some days where the last thing I want to do is update you all on something. And there’s some days that having the “responsibility” of this page makes me depressed and/ or adds stress to my life. And there’s some days when reading about your kid’s things (good or bad) can put me in a funk for a few hours.
And when I post something just to be humorous and / or just to keep you all the loop on something, and one of you posts some piece of advice or recommends some treatment that we’ve tried already, I must admit that it sometimes pisses me off. And I’m often tempted to write something. And then I stop and say that’s their journey. And if I can find one useful nugget of info in all of this it will be worth it. And I also have to remember that we’ve got new people joining all the time, so when someone asks “how old is kyle?” or “you should try the gfcf diet” i feel so close to you all I’m usually thinking “How can they not know that? It’s written right there in the info and in that note there and there.”
Anyway, as usual I’m rambling on and on and on… So let me stop here and say that I hope you’re enjoying reading this page as much as I’ve enjoyed writing it. And now that there’s 1800 of you, I may not remember all of your stories, but when I see your faces pop up I get a flash memory of your stories and your kids– a single mom of a teenage kid there, a city family here, a country family there, an army family here, a single dad there, an aspie kid here, a severe kid there, etc, etc., etc…..
PS– If you want to read some of my early FB posts, check out the blog post entitled “Autism Daddy’s Greatest Hits…”
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Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).