4 Reasons Why New Autism Parents Should NOT Read My Blog & FB Page
September 16, 2014
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Now Reading: 4 Reasons Why New Autism Parents Should NOT Read My Blog & FB Page
September 16, 2014
(originally written & published on September 15, 2014)
I’ve been meaning to write a blog post like this for a long time.
And wifey’s been wanting me to write a post like this for a long time.
And as my Facebook page gets closer and closer to 100,000 likes I figure now is a good time.
Here’s the deal.
Not a day goes by where I don’t get an email or a message from one of y’all saying something like “my kid just got diagnosed with autism yesterday and I just found & started reading your blog today.”
And when I read stuff like that I cringe on the inside.
Why, you ask?
Because when my kid was first diagnosed I would not want to have read a blog like mine.
Why, you ask again?
Well there’s 4 reasons why…
4 Reasons Why New Autism Parents Should NOT Read My Blog /FB Page
REASON #1) You’re Reading The Story of a Really Low Functioning Autistic Kid
In many ways my kid is kinda like a worst-case scenario situation. First diagnosed, of course, with PDD-NOS before he was two years old. Then he made some nice progress only to have a late, huge, slow, RARE, unexplained regression to become a severely autistic nonverbal kid with classic autism.
Why would you new autism parents want to scare yourself shitless by reading my son’s scary story? His story is a rare occurrence and I have no answers as to what caused his late slow huge regression so I’ve got no wisdom to impart.
When your kid is first diagnosed you should read and seek out those hopeful stories. Miracles CAN happen. Kids do go from being “severe” at age 3 to mainstreamed by age 7.
I didn’t say cured. I said
There was 1 girl who was in Kyle’s class when he was ages 3-4. This was an all severe, all autism classroom. This was an intense ABA school. This girl was severely affected. She was in school with my Kyle for that 1 year, and then they went off to different schools.
But fast forward 7 years and we run into her and her folks a few times a year at the pool and she is very high functioning & in a typical classroom (and she looks at Kyle with that “what is wrong with that boy?” look)
My point being low functioning, non verbal kids sometimes do grow into being high functioning verbal kids. Those stories are out there! But, unfortunately, my blog doesn’t tell a story like that. My son’s story is not one of those stories. My son’s story is a worse case scenario story.
So, again, why would you, a new autism parent, want to read about that?
REASON #2) My Severely Autistic Son Now Also Has Severe Epilepsy
Talk about a worst-case scenario! Two years ago, at the age of nine, my non-verbal, severely autistic, worse case scenario kid started having seizures… and now he’s got full blown epilepsy. And a hard to control/treat form of epilepsy that’s resistant to medication.
So you can easily google it and find out that about a third of kids with autism develop epilepsy.
Those facts are out there…
So why would you, a new ASD parent, probably overwhelmed by the recent diagnosis of autism, want to read my blog/FB page and hear daily about my son’s seizures & epilepsy? Why put yourself through that? Isn’t autism enough to freak out about right now? I think so.
Besides, when it comes to the epilepsy, I got no prevention stories for you. I got no old blog posts that say do THIS and there’s less of a chance that your autistic kid gets epilepsy. (“oh if only we had done that”). I got no epilepsy prevention tips or tricks for you. There’s literally nothing you can do to prevent it. So new autism parents, why worry about it now? Why read about it now? Focus on autism.
REASON #3: We’ve Got No Autism Success Stories to Share With You
You’re reading the story of 2 parents who had our son try many of the different flavors of treatments and medications and therapy’s out there for autism. And he had little or no success or improvements with any of them.
I’ve written about this quite a bit. We did the GFCF diet. He did intense ABA. We gave him vitamin B12 injections. We rented a hyperbaric oxygen chamber (HBOT) for a month. And lots of other things along the way. And none of it worked. None of it made him less autistic. Or less severe. Or helped his speech. Or calmed his behaviors.
In fact during the time that we did some of this stuff (GFCF & B12 injections) was around the time that he slowly got worse… He became more severe.
Do I blame any of the therapies?
Do I regret trying any of them.
Not really. (Ok maybe the HBOT cuz it was a HUGE waste of money.
Do I think some of these therapies and treatments help other kids with autism.
But not with my kid.
So you’re not going to read happy success stories about the GFCF diet or ABA therapy by reading this blog.
And when my kid was first diagnosed I wouldn’t have wanted to read a blog post about all the things that didn’t work. I would want to have some hope.
And trying some of those things are truly a right of passage for autism parents in the year 2014.
I wouldn’t want a new autism parent to not try the GFCF diet due to reading my blog. You need that hope as a new autism parent. So don’t read my blog with no success stories!
REASON #4) My Blog Is More About Me Than My Son With Autism.
It’s all about me.
Somebody wrote a comment to this effect just yesterday.
Now I’ll say that this blog isn’t all about me but yes it is a lot about me.
And while I do talk about my son and his ups and downs extensively, the blog is a lot about how I deal with the double whammy of my son’s autism and epilepsy.
And if you read the page/blog long enough you’ll see that even though I’ve been living this autism lifestyle for 9 years and the epilepsy lifestyle for 2+ years I still have a hard time with things depending on the day.
I accepted my kid’s diagnoses very early on. I love him with every fiber of my being.
And it does get a little easier as the years go by…but you know what…I can honestly say that it’s not that much easier, at least for me.
I wrote a few years ago that not a day goes by that i don’t see a typical father & son interacting and it hurts.
And that’s still true. It doesn’t hurt as much as it did a few years back (thanks Wellbutrin!) but yes it still hurts.
I’m not sure I would’ve wanted to know all that when my kid was first diagnosed. So why would I read a blog about a depressed father who is always talking about himself & complaining about the hand he’s been dealt?
So there you go. 4 Reasons why new autism parents shouldn’t read my blog
And I’m being somewhat sarcastic / humorous with this post but I’m fairly serious. When I was a new Autism parent I truly would not have wanted to read a blog like this.
But you know when I did need a blog like mine? I needed a blog like this in 2011 when my son was 8 years old and in spite of all the work he put in and we put in over the 6+ years on the autism roller coaster he was still severe, still non verbal, still not potty trained and he was filled with rage.
And I was tired of 6 years of trying autism parent support groups and finding nobody with the same issues as us, nobody with a kid as low functioning as my son. Their problems with their autistic kids seemed trivial to me. “Echolalia? Repeating Dora lines all day? at least her kid can talk”. I’m not proud of this but thinking back that is the way I felt.
And Facebook wasn’t helping with all your old HS friends with typical kids posting beautiful family pics of their vacations & holiday dinners.
So back in 2011 I tried to find an online autism support group or blog or Facebook page that told anything close to our situation with our son.
I tried to find a place online where people talked about everything associated with severe autism, the good, the bad, and the poop/pee.
And all I could find were those happy blogs/pages telling success stories (that I recommend you autism parents read now).
Nowhere were people telling a story like my sons story or my story.
It was all sunshine & rainbows and “god wouldn’t give you more than you can handle” and “my 7 year old autistic kid just smeared poop on the wall, but I wouldn’t change him for the world”
Now again when I was a new autism parent I needed and sought out the sunshine & rainbows stuff (but not the god stuff or the change him for the world stuff)
But after 6+ years of living in the autism trenches I had enough and wanted to hear more about kids like my son and moms & dads like me.
I couldn’t find any so I started this Autism Daddy page & blog and hit the ground running posting daily about the craziness that was (is) our lives.
And slowly but surely hundreds, then thousands of moms & dads just like the wife and me came out of the shadows and told the funny, dirty underground stories about their severely autistic kids and we had our own little crazy stimmy quirky community.
And now that quirky little community is gonna hit 100,000 likes in the week or so!
So I’ll end it right back where I started it…
New autism parents please don’t read my blog. And I hope you never have to read my blog.
I hope your kid has a huge improvement with ABA or the GFCF diet and you never find yourself wanting to read a blog like mine.
However, if after a few years on the A Train, your ASD kid is having a rough time and you’ve been down in the dumps and tired of reading about all the kids who showed miraculous progress with _____ while your kid didn’t.
If that’s you after a couple of years on autism avenue then that’s when I invite you to pull up a bar stool and join the autism daddy community and jump in and read this blog from cover to cover and join my FB page and laugh and bitch and complain with other parents about our kids crazy stims and bizarre sleep habits and share stories about our kids pee and poop.
Until then new autism parents, after reading this post, stay away from this blog… And I hope for your sake and your kids sake that you never have to come back
That’s it. The end!
Love you all!
Autism Daddy Over & Out!
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” :-).