Tuesday, October 18, 2011

The Autism Daddy Origin Story :-)




(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..."

THE END


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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link 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!!




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13 comments:

  1. I am a new follower to your FB page...but I love it! You should never apologize for being honest about how you feel...we all go through it some days!! Somedays my emotions are as up and down and my sons! Thanks for sharing your stories and a piece of your life with us!

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  2. I'm a huge fan of your Facebook page and blogs you will never know how much I admire you and your family and you are inspiration to us all with your honest and no hold back post and blogs it gives all us permission to say sometime its just plain SHIT the ride we all on and that we dont have to have a smile on our face everyday and instead of saying we are fine we say NO IM FUCKED THANKS FOR ASKING :)so BIG Thanks from A Australian Single mum with a beautiful son with autism i always get a laugh or Smile or a cry from what you write I run a support group in my town and all new mums I recommend your Facebook page and anyone else that's interested in autism .THANKS AUTISM DADDY:)

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  3. I think your page is awesome, I am a new follower as I am a gramma to an autistic grandson. He is 5 and non-verbal and there are so many simialarities between Dominic and Kyle. I got my daughter to check you out too. I love your down to earthness! Thank you Autism Daddy!

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  4. I'm the father of two, my youngest son is 16 and is right smack in the middle of the Autism Spectrum.....I'm a veteran of the Blog/FB/Journaling Club.....no apologies, no regrets..........I write to vent, to help were I can, to feel like I'm contributing...mostly to keep my sanity

    Keep writing, keep posting.....keep on, keeping on
    RFC in Coastal Georgia

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  5. I'm new here and sometimes I wonder if I'm supposed to be. My son is very high functioning, comunicative and wonderfully cooperative most days. Still there are other days when he is obsessed with his letters and numbers, repetitively stuck on the same quote from his favorite TV show, or just melting down that I find myself relating to some nugget. He may not be severe, but none the less I'm still angry at Autism. I guess I'm here so you can rant for me. Thank you... and rant on.

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  6. I'm new here and sometimes I wonder if I'm supposed to be. My son is very high functioning, comunicative and wonderfully cooperative most days. Still there are other days when he is obsessed with his letters and numbers, repetitively stuck on the same quote from his favorite TV show, or just melting down that I find myself relating to some nugget. He may not be severe, but none the less I'm still angry at Autism. I guess I'm here so you can rant for me. Thank you... and rant on.

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  7. I am a single mom and gramma of three autism spectrum kiddos! I am glad that although they aren't severe by any means someone still understands what I'm going through! I adopted the 14 year old at 5, the 5 year old grandson at birth and the 2 year old grandson has been with me off and on since birth now adopted! and of course their 4 year old dd sister! you pisted kyle playing with his saliva is your kriptonite and I totally feel you my 2 year old either licks everything or spits and it is my kriptonite! I can't stand it, but it's nice to know someone else feels the same way! keep on keeping it real!!!

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  8. I know i haven't said much on your page, but i do follow and enjoy that there are others who experience my world. My eldest with autism is almost 16. Then my 10 yo and my 9 yo also have a more severe form of autism and other neurological problems. This Christmas eve, I'm sitting in childrens hospital waiting to find out if my 9 yo has brain cancer. My husband is deployed and it is a very lonely holiday right now. I can relate to your progress and regression.

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  9. dont feel bad at all i feel like that all the time people dont understand what we go through everyday.

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  10. A friend of mine who has a child on the autism spectrum posted this link. I don't have a family member with autism, but I was a registered nurse in assisted living and many of my families were dealing with dementia of different types. Obviously, it's not the same thing, but what IS the same is that you have to care for the caregiver. I think it is fantastic that you have created a safe haven for people to vent (and, in a way, grieve) for what autism can do to a family. Letting it out in a non-judgmental place, and finding common humor in some of the things that happen, is a giant first step towards handling the stress that goes along with any types of issues that are 24/7 with no cure in sight. I applaud you!

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  11. Just wanted to pop on and say thank you for continuing with this page. Totally get the days where you feel running this page is an added extra stress to your life, but always remember, nobody EXPECTS posts every single day. From what I have seen, the majority, like me, have a family member with Autism or work in the field, so we all get it, and appreciate even more the fact that you still find time for us. I have read many blogs, but for me this is the one that has always remained honest and true and covers the length and breadth of living with Autism. Keep on going AD :-)

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  12. i have followed for about a year, enjoy your openness...its not easy, there is no compass or map or navigational system that is better than the posse of families who are living autism. Kudos to you, and as with all things in life; take what you like and leave the rest....i admire your dedication to your blog/page as i am not so reliable with mine. But these web logs give us autie-parents a place to 'un-tangle' our own thoughts: the good, the bad, the ugly....have a groovy day and carry on ~ t.

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  13. Just found your sight and and admire you. We have an 8 yr-old son who is severely autistic.He was diagnosed before he was 2 and has been attending a specialized school since he was 5. Keep it coming and more will follow. Thank you.

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