A sometimes politically incorrect open letter about #Autism Parenting 




Going into this post, please know that I truly understand that every parent faces challenge and struggle. Parenting isn’t easy and that should go without saying.  When I speak about the unique challenges facing Autism parents, it’s not meant to invalidate the difficulties associated with everyday parenting.

At the same time, just as it’s important to understand that parenting in general isn’t easy, it’s important to understand that Autism parenting is something all together different.

Something that’s gotten under my skin a bit recently, is the way some people have reacted to my mentioning of taking a nap on some days. I’m not sure why anyone would care about that but clearly it’s rubbing some people the wrong way.

I’ve decided that I’m going to share a few thoughts I have on this particular subject because if this is happening to me, it probably happening to others as well.
When you come to The Autism Dad Blog, you’re coming here to read about what life is like for one Autism family. Every Autism family is unique but the insight I’m providing my audience, can help them better relate to an Autism family in their own lives.

I very openly and honesty share the joys, victories, struggles and heartache that my wife and I face on a daily basis. The only motive is to help educate as well as reach out to other parents in similar circumstance, to ensure they know they aren’t alone.

Let me tell you a little something about my life as an Autism parent. It’s hard. It’s the hardest thing I’ve ever had to do. To put that statement into perspective,  I used to run into burning houses and pull people out of truly horrific car wrecks or manage codes for over 45 minutes before arriving at the hospital. I did that for a living and comparatively speaking, being an Autism Dad is infinitely more challenging.

You know what? I’m fucking tired! I’m fucking tired all the time and I’m not ashamed to admit that.

I’m overwhelmed. I’m burnt the fuck out and I don’t sleep worth a shit anymore because my kids don’t sleep worth a shit.

Even when my kids do sleep for a period of time, my sleep is broken and restless because I’m so stressed out that my brain won’t stop trying to process all the shit I lived through the day before.

Even if my brain would shut off and my kids would actually sleep, I’d still be sleeping with one eye open because I’m worried about my kids wandering the house, getting into things or getting hurt.

This doesn’t happen on occasion. This has happened pretty much every single night since Gavin began waking up with night terrors multiple times a night when he was very young.

Since his regression started shortly after he turned four years old, we’ve had to monitor him 24/7 because he would literally eat anything he could get his hands on.  It’s called Pica and I can’t tell you how many emergency room visits we’ve been on as a result of him eating things you wouldn’t think possible.

It’s been this way for well over a decade now. Since then, we’ve added two more beautiful little boys to our life who have been diagnosed with Autism, various other special needs and extremely rare health issues as well.

So yeah, I’m fucking tired.

Some people assume that because I don’t work outside of the home anymore, that I somehow shouldn’t be as tired as I am.

Apparently, taking a desperately needed nap while my oldest (whom I’m the 24/7 caretaker of, as ordered by the Cleveland Clinic) sleeps off his morning meds, means I must be lazy or unmotivated.

Sharing the truth about much of my personal struggles as a father to three kids with Autism and various other special needs, means I’m being negative.

Guess what. The truth is that being an Autism parent can truly suck ass. It can suck ass in ways that only another Autism parent can even begin understand.

That’s not to say it’s not totally worth it or that there aren’t a million reasons to be grateful for the life I live. It certainly doesn’t mean that I don’t love my kids to infinity and beyond either. In fact, I make it a point to celebrate every little victory because every step forward is progress and I couldn’t be any prouder of my kids.

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Being an Autism parent means that I’m tasked with responsibilities that only present themselves when you’re an Autism parent. It means that I endure stress on a constant daily basis, that the human body isn’t designed to physically be able to cope with and believe me, it takes a toll.

All parenting is challenging and nothing I say is meant to take away from the challenges typical parents face.

Having said that, Autism parenting is an entirely different beast all together.

Nothing comes easy. Even the simplest of things can turn into massive, house shaking meltdowns that not only leave us completely exhausted but also living in fear that someone will (for the third time) call CPS and report us because they don’t understand what’s happening.

So yeah…. I’m tired.

My chronically wife ill and I are both so completely drained that we have to triage everything in our lives because we only have so much energy left and we want to direct that where it can do the most good.

Does it make us bad, lazy or unmotivated parents because the house is a mess or the yard is unmowed? How about the mountains of laundry that needs to find a home? Does that makes us bad, lazy or unmotivated parents?

No! No it doesn’t!

It means that we have given every ounce of what we have left to our kids.

It means that after a day of dealing with meltdowns, insane amounts of medications, school, doctors visits, speech/OT appointments, weekly family therapy, making three or four different meals for every meal because of sensory related food proclivities, it takes all we have to make it to the end of the day.

It means that after desperately trying to help our youngest simply tolerate clothes on his skin and shoes on his feet, we’ve depleted our limited reserves before we even start the day and get into the things mentioned in the paragraph above.

It means that at any given moment, we’re functioning at a deficit. Every challenge we face, helps that deficit to grow and with limited if any, restful sleep, putting resources back into the reserve is extremely challenging, if not impossible at times.

After writing just a small part of what I deal with on a daily basis, it occurred to me that I’ve left out all the everyday worries like bills, housework, grocery shopping, bringing in an income from home and anything else that the rest of the world has to deal with.

There are more days than not that I don’t even make it through the bulk of the Autism parenting stuff and that of course means that the rest of the everyday stuff, doesn’t even stand a chance.

So yeah… I’m tired and as any understanding and compassionate Autism parent will tell you, we take sleep when and where we can get it.

I would challenge anyone to step into my shoes and do better. Until such a time where that happens, no one has the right to judge me for seizing an opportunity to take a nap.

For that matter, no one has a right to judge me or any other special needs parent for doing what they need to do to survive.

We don’t always have the luxury of choices. Autism parents can spend a great deal of their lives in survival mode.

What we need is compassion, understanding, respite and maybe a little kindness. We don’t need judgement, ridicule or harsh words from people who haven’t the slightest clue what our lives are like.

It takes more effort to be critical than it does to simply ask if someone’s okay. Please remember this when dealing with a special needs parent.

Lastly… For the love of God, please stop getting bent out of shape because I share my experience as a special needs parent. This is a blog dedicated to that and not typical parenting.

Unless I’m making a direct comparison between different types of parenting (and that’s only to help put things into context), nothing I say is ever meant to belittle or invalidate the challenge or struggles faced by typical parents.  Parenting is hard across the board but Autism parenting is a truly unique challenge that quite often will span the entirety of the parents natural life.

Drops the mic……… 

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