Insight into the fear and self-doubt that’s keeping this #Autism Dad awake tonight

So often parents of kids with Autism or Special Needs suffer in silence. We don’t always ask for help or tell people the truth about how we’re really feeling, if we’re ever asked.

As I’m trying to help people understand what parents like myself go through on a daily basis, I’m going to share what’s keeping me awake tonight.

These are my innermost thoughts that only myself and my wife are ever really aware of.  I rarely talk about this stuff anymore because they aren’t things that I’m proud of and frankly, I don’t always have the courage to share this stuff publicly.
As I’m laying in bed tonight, I’m overwhelmed by fear, self-doubt and feelings of utter failure.

I feel like I’m failing my kids for a million reasons and on many different levels. I’m not giving them the lives they deserve.

I’m not keeping up with the bills, despite my best efforts and I’m having to shunt every last dime into bolstering our grossly inadequate grocery budget.

I can’t even keep toilet paper in the house right now.

There were so many things I was looking forward to doing with the kids this Summer and just about everything failed to get off the ground.

Usually it’s because we just don’t have the money. I can’t even take the kids Pokémon hunting right now because I have 1/16 of a tank of gas in the car and I’m flat broke until Thursday.  I don’t even know how I’m going to get the kids to school this coming week.

I guess I need to start counting change at this point.

We can’t really walk around our neighborhood or spend much time outside because it’s become a shithole of drugs, violence and utter craziness. It’s not always physically safe and I just don’t like taking chances, especially considering that we’ve been involved in a drive by and had someone gutted in front of our house in recent years.

Just the other night we had what turned out to be a big drug bust in the house directly behind mine.  That’s always nice to know.

Moving isn’t an option either because it’s not financially possible.

There was a point this year where we were actually doing pretty well. I felt like I was finally able to breathe and then we get two letters within three weeks of each other claiming that SSI had overpaid for Emmett and Gavin earlier in the year. This was total bullshit because the payments are set in stone and nothing was ever overpaid but now we’re being docked until it’s all paid back.

It only amounts to a couple hundred dollars a month but that’s just not something we were able to absorb. It’s impacted our mortgage, utilities and limits our ability to keep food in the house that our sensory sensitive kids will tolerate.

I feel so much stress because I can’t always figure these things out and that’s not something I deal with well.

I’m overwhelmed and exhausted because we can’t seem to work through the sleep issues my two youngest are having.  I don’t even remember that last time I was able to sleep straight through the night. This does wonders for my ongoing war with depression.

I feel fear because I don’t know what’s going to happen tomorrow.  Will we be able to skate through or will something else happen that pulls the rug out once again?

Life with Autistic children can change dramatically at any moment. I can never really let my guard down.

As hard as all of that is to deal with, it pales in comparison to what I feel just knowing that my kids are struggling in ways that I can’t fix.  In some cases, I can’t even level the playing field for them.

There’s nothing quite like powerlessly watching your child deteriorate in front of you.

I can’t even adequately articulate what this feels like in a way that most people can relate to.  Knowing there’s absolutely nothing that I can do to even mitigate some of these challenges for my kids, Gavin in particular, is among the most helpless and hopeless feelings I can even fathom. I get to face these feelings every single day of my life and every night when I close my eyes.

I can reach a point where I just don’t care about things like bills, the house, the yard, the mortgage, making other people happy and anything else that requires resources to be redirected away from my kids.

They don’t get enough as it is, I can’t afford to take anything more away from that effort.

The absolute best is knowing that I’m on borrowed time with things like utilities or the mortgage because that just adds so much more weight to my shoulders.

Ultimately, I can’t really do anything about most of these things and that’s such a difficult thing for me to accept.

At the end of the day, I don’t always even know how I made it through.

All I know is that I can’t quit. I can’t stop trying, even when I know deep down inside, trying isn’t going to make a damn bit of difference.

There are times like tonight where all this is just crushing me and making it hard to even breathe, let along actually sleep.

Talking about this doesn’t always help because not many people can honestly say,  hey,  I totally get it because I’ve been there myself.  My hope is that by swallowing my pride and sharing this with all of you, I can give you at least one person who can honestly say, hey, I totally get it because I’m living this myself and you aren’t alone.  

There’s a weird sense of comfort knowing that you aren’t alone and I truly hope this provides someone that comfort.

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14 Comments on "Insight into the fear and self-doubt that’s keeping this #Autism Dad awake tonight"

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Braden
Guest

I see you mentioned the overpayment again….You should be prepared for that happening next year too. Between your tax return (and now the server fee money) this will be counted as income and most likely to continue to happen each year.

Keep looking for alternatives to supplement your income, any little bit helps…lots of WFH options to make a few bucks on your own schedule.

And believe me, I get staying up worrying about things…we all have our stressors, even if they are different.

Rob Gorski
Guest
I appreciate the heads up but it doesn’t work that way. Tax return doesn’t count and I don’t receive any money for the servers. It was just paid for by the third party. Kinda like someone picking up the tab. The overpayment was an error that never happened. SSI is $740/month. That’s exactly what they got every month, so there wasn’t an overpayment. In fact, I’ve heard from a few people that have had the same thing happen this year. I need to follow up again with SSI and try to get this fixes and the money returned. You’re right… Read more »
Sophie Wegat
Guest

It sounds like the advertising isn’t bringing in enough income. Perhaps you need to brainstorm for additional revenue streams. Weren’t you making guardian locate, how’s that going?? Could Lizze do some work from home?

Oh and sorry you’re under so much stress.

Rob Gorski
Guest

Thanks Sophie….. ☺

Braden
Guest

If I’m wrong about both, I hope you have it figured out in advance. Otherwise you will be staring down the same Barrel in a few months.

And while I appreciate your determination to make a go of the website, you need to consider alternatives. Right now you are just kicking the proverbial can down the road and waiting for the next utility to be shut off. It sucks, but it’s also impossible to get ahead that way

Rob Gorski
Guest

Neither of those count as income. I know the ins and outs of SSI. Gavin’s been on it for close to a decade.

Now that I have no expenses associated with this site, everything that comes in is profit. Once I get the SSI issues straightened out, we’ll be doing better.

It’s a combination of things at this point.

Thanks again for your concern.. ☺

Sophie Wegat
Guest

I tend to agree with Braden. Wasn’t the hosting $150 a month? Sure it’s great to have that in your pocket but it’s not a lot of money when you’re constantly struggling with no food, loosing the house and getting utilities cut off.

Rob Gorski
Guest

That’s not entirely accurate but I get your point. You have to remember that it’s not just one thing. It’s a combination of several things have caused this particular hardship. When you add together the savings from the server fee’s and getting the SSI back on track, that’s somewhere in the neighborhood of about $400 a month.

That makes a big difference for us.

Zoe
Guest

I know you don’t like me. But you’re wrong about the server fees. They are easily ally paying you for advertising. You may not actually see cash, but it’s a payment. And you can bet they are writing it off as a business expense on their end.

Rob Gorski
Guest

You’re right about one thing

Zoe
Guest

I’m right about both. You still aren’t going to make enough a yeah for it to be a worry. But if you had an actual job and didn’t claim this as income, it could cause problems. But for you, it most likely put you into a tax bracket whet you won’t get your big fat spend it now fun money check.

Rob Gorski
Guest

Zoe/Mom,

It always amazes me how you somehow know my life better than I do…. If only you used those powers for good…. O_o

Zoe
Guest

Essentially, stupid phone typing

Rob Gorski
Guest

I also want to say that I appreciate all the well thought out feedback. I appreciate not being judged and I just wanted to say thank you… ☺

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