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.