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It's Autism Awareness Month & I've Got Nothing To Say…

It’s Autism Awareness Month and I’ve got writer’s block and I’ve got nothing to say. All my other fellow autism mom & dad bloggers are writing beautiful posts or angry posts or informative posts…and I’ve got nothing.

Part of me feels like I’m letting you all down. That I’m being EXTREMELY lazy.

What have I been doing this month instead of blogging? Well work has been a bit busier and in my other “spare time” i’ve been watching “Homeland” and “Shameless” on Showtime On Demand or I’ve been playing Zynga No Limit Poker on my iPhone.

Yes Showtime & No Limit Poker has replaced blogging. I’m addicted to them!

And it’s not that I don’t have things to blog about. I’ve had 3 great posts in my head that I’ve been meaning to write for weeks…

Here’s a taste of the 3 blog posts that have been in my head…

1) I want to write a post telling new autism moms & dads NOT to read my blog. A lot of new autism parents have been posting on my page lately saying things like “my kid was just officially diagnosed with autism yesterday and I just found your page today” or saying things like “I get all my autism info from you” You would think stuff like that would flatter me or you would think stuff like that would make me feel proud…but to be honest, hearing stuff like that, and reading stuff like that scares the shit out of me!!

2) I want to write a post about how I wish I could interact with my ASD kid the way his teachers, therapists, respite workers do. They are so calm with him and he feeds off their calmness. And it’s mainly because they are not his parents…and they’re not looking into the future when they’re with him. They’re just living in the moment. Basically I want to learn how to treat my kid like he’s not my kid…and we’ll both be better for it.

3) Around the 2 year anniversary of my Autism Daddy persona (April 16th!!) I wanted to write a blog post preparing you all for what is to come as the king hits 10 years old next month. As you all know nothing is “off limits” on my blog. I kinda consider myself the Howard Stern of autism parent bloggers. lol And the king is starting to discover his youknowwhat and play with it and his puberty years are approaching and I wanted to write a post warning you all / preparing you for the fact that NOTHING will be off limits! 🙂

3 great topics that I think would make great blog posts, don’t you?

But when I sit down to write them I decide to play poker instead.

And it’s not like I don’t have more of the day to day stuff to write about.

Kyle has been amazing behaviorally and his receptive language seems better the last few months… but he’s been sleeping a lot due to an increase in one of antiseizure meds. And this week he’s had a few breakthrough seizures so we’ll probably need to adjust his meds again. And adjusting his meds will be scary cuz he’s been having a LOVELY few months now so we don’t want to lose the great behavior and the better receptive language but we’d like him to not be as sleepy and of course, we want no more seizures. So we have been dealing with that. And there’s probably another 24hr EEG in our near future which I’m not looking forward to.

I’ve also been meaning to write about the INSANITY of his constant breath holding which had been going on for almost 3 years now…but now we feel like it’s getting worse and and may be helping to trigger some of his seizures. He’s been going to behavior therapy for a year and a half for this and they had a “protocol” that was helping a little bit but it stopped working around the Christmas holidays and now nothing is helping and sometimes the breath holding kinda gets in the way of his life cuz he’s so concentrated on breath holding that he can’t walk a straight line.

So there’s another long blog post right there, but I haven’t written it.

But the show “Shameless” has been great!

And then my aunt (my mom’s older sis) passed away suddenly earlier this month so I’ve been dealing with that and then the Boston Marathon bombing happened which hit me especially hard as a marathon runner cuz I know first hand what an amazing joyous day Marathon Monday usually is in the Boston area.

So basically autism has kinda taken a back seat this month, ironically on Autism Awareness Month.

Autism has taken a backseat this month to work, Showtime, poker, seizures, breath holding, my aunt’s death, and the Boston Marathon bombing.

So there you go. Forgive me for not blogging or posting on FB that much this month… Now you know all the reasons why.

So let me hurry and finish writing this post this so I can play a little poker while poking Kyle in the belly every 20 seconds so he exhales from holding his breath.

Thanks for listening. And let me know which one of the blog posts that have been floating around in my head I should write next.



Written by

Frank 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” :-).

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14 People Replies to “It's Autism Awareness Month & I've Got Nothing To Say…”

  1. Anonymous

    Okay, you officially rock. After a particularly difficult day (or was it only 45 minutes? One and the same in my household) with my beautiful but extremely frustrating 9yo ASD boy, I googled "autism blogs" and came across yours. Thank you for making me understand I am not alone in this very lonely battle. While I already knew this on an intellectual level, emotionally it's really important to read stories like yours, from fathers no less, that create bonds of shared experiences. Thank you.

  2. Don't agree with the vaccine stuff in this blog,but this post has a lot to say.

    When every day is Autism Awareness Day,you don't need to be reminded of it.

    Oh yeah,fuck neurodiversity.

  3. Its fine for autism and awareness to take a back seat. You have a life to lead and a family to take care of – that comes first.

  4. Anonymous

    I'm exhausted just reading your posts. Take a break when you can. How nice to be normal. I don't have autism in my family but I have made it a passion to raise awareness and funding for Autism. I'm holding my second event this Saturday and for the last 6mths I feel I've lived a very slight life of an autism parent. The knock backs for support, the costs involved, the frustration, the sad stories I've heard from parents, the blogs I read have opened my heart up more and more and the empathy I have for all you great wonderful parents is enormous. I take my hat of to you all. Take a break now. Even for moment honour yourself. Celebrate yourself even if it means to turn your brain off from it. I can almost feel your complete exhaustion. Btw I LOVE Shameless.

  5. I always like to say in April that I'm prefectly aware of Autism EVERY single month of the year, so no one can blame you for taking this month and making it NOT all about Autism!! Love your blog!

  6. Anonymous

    We have been enjoying fringe as our autism escape! Life is too short and too hectic to spend every spare minite on a pc.enjoy yr poker and shameless lol!!

  7. That's a good thing! You may be an autism parent, but you are still an individual and fully entitled to be yourself and do the things you enjoy. This is something my husband and I have resolved to always remember. We may be new to the world of autism since our son was only recently diagnosed, but we are determined to maintain some level of normalcy. We take the time to just sit back and enjoy doing things together whenever the opportunity arises.

  8. Anonymous

    Yay!! I say more poker and tv! You need an escape from autism for awhile.

  9. Anonymous

    I can't see how anyone could blame you for not wanting to do the blog…one simple month. We are all just trying to make our lives happy for us and our kids. If that means you don't blog for a month or two or ever…you don't. Happy trails..I wish you well. That being said, I have enjoyed your posts (just having found you) and if you continue…I will continue to follow you…I'm an aspie mommie. My guilty pleasure has been the original Dallas and True Blood…completely addicted right now. Take care and hope to be reading more of your insights/posts. 🙂

  10. Anonymous

    Shameless is an awesome distraction!!! =)

  11. Amanda

    You mean that for just a moment of each day you have been able to put the majority of your energy into something other than your son's autism, guess what I call that an amazing thing!!! My daughter (5) has Autism and I have two other children so I definately don't have the time to post every single day anything let alone a huge well thought out blog! I'd say enjoy the slight break while you can.

    PS. I Love Shameless!!!

  12. Do you want to brainstorm the breathholding via email?

  13. I envy your lack of posts…I live,breathe,eat,sleep(or not sleep)autism and frankly I am so very tired…Jakob is 4,"severe",non verbal and you give me such hope that one day I too can say autism has taken a back seat…enjoy your poker,your shows, your look into "normalcy" even if it's just for a moment

  14. Stop beating yourself up! I actually found your lack of posts encouraging….I kept thinking that life must be good, since autism has taken a back seat to everything else. And I hope this is just the beginning, and that you and AM can start to re-discover the world beyond autism. Keep up the great work, and enjoy these moments of normalcy!