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Turning Off the Autism When I Get to Work Isn’t as Easy as It May Seem

Some days I wish I wasn’t an involved autism dad.  Some days I wish I was one of those dads whose main role is to work and “bring home the bacon” and I could work long, crazy hours and leave all the autism and epilepsy work & worrying to Wifey. 

Aaaah…wouldn’t that be sweet…
But I’m not one of those dads…  I don’t bring home enough “bacon” and my hours aren’t crazy enough to warrant being a dad like that…
And I don’t think I could mentally be a dad like that… It’s not in my DNA.
So during the week I’m an autism / epilepsy daddy for 16 hours a day and a loyal and hardworking employee for 8 hours a day….
I work in a company of about 300 employees. Many people at work know that my kid has autism. Some know that he also now has epilepsy. And a few know about the blog (but that number is growing). 
However, I don’t think I’m defined by the fact that I’m a special needs dad at work. I’m just me. I’ve been quietly working there for 21 years. I put my head down, get my job done. I think to the outside world at work I come off as pretty calm, cool, and collected most of the time, maybe a bit aloof at times…with a few flashes of work stress here & there.

I don’t think by my outward demeanor I show the stress that I’m dealing with in my home life on any given week.

However, I gotta admit that some days it’s really hard to turn off the stress of special needs dad when I walk thru those doors at the office. 
In the past few weeks I’ve had a bunch of autism related activities to attend to before work. A rough IEP meeting one morning, blood work for Kyle on another morning, a tour of a potential new school for his majesty on another morning, all in the past 2 weeks. 
For all these events Wifey and I take separate cars so I can speed into work afterwards. 
And what usually happens after all of these is that wifey and I spend 15 minutes in the parking lot chatting about our next plan of attack.
Then on the drive to work sometimes I call her if something pops in my head and we chat some more. 
And on many mornings lately when I get to work my head is spinning and filled with the thoughts of school tours and I’m literally writing emails to schools in my mind. 
And then I need to switch that off and go right into a meeting that has nothing to do with any of that. 
It’s not easy. I know all working parents have to do that. And I know some have it harder than I do. But I’m just admitting that it’s really hard for me. 
If I want to be honest years ago it probably was even harder. 
Back in the pre-melatonin pre-potty training days, we’d get very little sleep in the AD household And Id arrive at work on less than five hours sleep (not in a row) and less than 40 minutes removed from changing a poopy pull up on a seven-year-old boy. 
Back then it was hard to switch that off when I got to work too… 
But those no sleep, poopy pull up days had a different feel to them. 
Anyway all this to say that it’s not easy turning off special-needs dad when I get to the office each day. 
And I said this before and Wifey knows this (and reminds me of it sometimes ) 🙂 there’s many days where work is a respite for me. 
Eight hours of work + a 45 minute commute each way equals 9 1/2 hours of respite each day. 
And as stressful as work can be sometimes I know it’s a lot easier then what Wifey has to deal with on an average day. 
On any average day lately, wifey is holding her breath waiting for a call from the school to pick up Kyle because of big seizure activity or because of extreme aggressive behavior. She’s also been writing emails to school administrators and district chair people trying to find school placement for September.  And setting up appointments to visit schools. And trying to occupy the Kings afternoons as best she can. 
So I readily admit that her job is much harder than mine, living and breathing autism and epilepsy 24/7. 
So when she takes her respite, when she wants to go out, heck needs to go out, I never give her a hard time. 
But I’m getting off track. The main reason for this post was for me to confess how hard it is to turn it off. And while I said above that I get 9 1/2 hours of respite on an average work day that doesn’t mean that my brain is special needs free for all 9 1/2 of those hours….

Let’s calculate…

My brain on the commute to work is filled with autism and epilepsy thoughts so that takes up those 45 minutes. That doesn’t mean that I’m not blasting music or listening to Howard Stern. That doesn’t mean that I’m completely miserable for those 45 minutes.

I’d say that it takes a good 30 minutes after I get to work for my brain to completely settle into work mode.  (So maybe I shouldn’t plan any important meetings for that first half hour) :-).

Somewhere in the middle of the day, around 2:30pm when I know the King is in the car with wifey on the way home from school my thoughts will drift to wondering what his day was like… holding my breath waiting for that text or call from wifey, waiting to hear a good report or a bad report. I’d say that last about 90 minutes until around 4pm when I finally bite the bullet and check in with her myself.  Now again that doesn’t mean I’m not a productive employee for those 90 minutes, these thoughts are not completely taking over my brain, they’re just sitting back there…in the back of my brain… Festering…
And then the 45 minute commute home while blasting music or listening to ESPN Radio, my brain will  get bogged down with thoughts wondering what the evening is going to bring…and what kind of mood I can expect Kyle, and therefore wifey to be in. 
So 9 1/2 hours becomes 6  hours of respite. 
Ahhh, still 6 hours of respite where my brain is free from autism/epilepsy thoughts. It’s no wonder that i sometimes can’t wait to get to work on Mondays. It’s no wonder that Wifey is jealous that I get to go to work in Manhattan each day a have adult conversations about adult, non special needs things… 5 days a week!

But I guess my point to all of this is to say that as a full time working dad, it is not as easy as it looks.  It’s not easy going from an IEP meeting at 9:30am to a fiscal budget meeting at 11:30am.  It’s not easy getting a text from wifey saying “Kyle had a 2 seizure, 3 hit day at school” at 3:15pm to a creative brainstorming meeting at 3:30pm.

Would I want to trade places with wifey and be the at home parent?  No freaking way!  But being a full time working parent who’s very involved in my special kids life isn’t as easy as it seems or as I might make it appear to the outside world at times…

If only I could be one of those not involved dads… If only I didn’t care so much…. Things would be so much easier…

Aaaah, wouldn’t that be sweet…


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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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7 People Replies to “Turning Off the Autism When I Get to Work Isn’t as Easy as It May Seem”

  1. Thank you for sharing
    On your side

  2. Ray

    Thanks for this post. I have the same problem, and the exact opposite problem. You see, I'm a construction worker. Masonry. I forget to turn off the "job site" brain. Case in point, I called a particular crane operator a "douchebag" while talking with Wifey Poo one night. Our Dude, proceeded to call everyone around him a douchebag for the next 2 weeks. That was an interesting call from his school aide. Your blog helps us laugh. We need it. Keep it up.

  3. Mary

    God 's blessing to you and your family . My son is a single parent w a non verbal child . I see the joys and the struggles .

  4. I needed to read this post today! I work and sometimes it is so hard to be a very involved mom and also work. The morning is making lunch and changing diapers and meltdowns and all kinds of crazy and then I am running to finish a presentation or go lead a brainstorm. Every vacation day I have is to help with family and take the burden off my amazing husband who stays home. But I never get a real break because any break I have is a school vacation or a miserable dentist trip. I always think I wish I was a guy that didn't care and went on work trips enjoying the flight and drinks out and instead I am tormented with guilt if I am having any fun or I am thinking about what my husband is dealing with. Its nice to know you are out there dealing with similar issues….we found this blog right after my son was diagnosed and its hugely helpful in this very lonely autism world. People really have no idea unless you are living this life….

  5. Trish

    Very enlightening. Sometimes I think hubby gets a nice break but in reality it isn't such a break. In fact, I get texts all day long asking about our guy and given requests for pictures to help him get through the day. He never shuts it off and it may be a bit easier for me since I'm more aware of how things are going at home. Having said that, it's not helpful when I have a dozen texts from him because he's concerned I haven't answered him back – that most likely would be during some particularly difficult moments. 😉

  6. Thank you as always for sharing your life with us, AD…This just kind of resonated with me today as it's the last day of school and this Autism Mommy isn't going to get much of a break, but I have to remember that my super awesome husband isn't either, although it may seem he does at times. Hang in there! No early morning work meetings! 🙂