Last night was rough. On the one hand, F (oldest child, special needs) didn’t wake up and immediately start banging on his door. On the other hand, he did lie there crying and whimpering for about 5 minutes before one of us decided to go check on him, and as soon as I opened his door, he started screaming.
Sadly, this is not unusual. It just hasn’t happened in a while, so it feels like a step backward. When you’re woken out of a deep sleep and suddenly faced with screaming, it does something to you. You go into a sort of fight or flight mode. As a parent, you find yourself wanting to help, but it gets really frustrating really fast. I couldn’t really say just how fast. It’s kind of a blur now. It’s a sort of panicky, angry feeling. Time slows down, your heart rate increases, your head starts to buzz…
Ever been in a really heated argument with a partner? The kind that gets you so worked up you start shaking? You feel attacked and you attack back. You combat yelling with even louder yelling. Something in your brain tells you that you need them to see it your way; you need to overpower them, need to control them. My friend Mike who works with battered women could tell you more about that. But most of us, I’d wager, have had feelings similar to this.
But have you ever felt this way toward your kid? When you argue with another adult, you know they can handle themselves. You’re peers; it’s a fair fight. But a 7-year-old kid with a disability? Makes you feel like a bully.
As much as I try to be patient and calm and understanding, things still build up. Eventually, I reach a breaking point. A parent can only be hit, bitten and screamed at by their child so many times before they lose their shit. Thankfully, I knew when to walk away, and Karin was there to take over. I was so angry. I went back to my room and screamed into my pillow. I hated myself and my life.
And as I laid awake for the next hour or two, it was hard not to think of myself as a complete failure as a parent. I felt tired and weak and sick. I thought about how, as much as I care about him, F doesn’t really need me, specifically, but any adult who would take care of him and play with him. But then, there really aren’t many others who would.
Then I thought about how, just a few hours earlier, I had been there to comfort S (middle child) when he fell on his arm at the playground. He didn’t break anything, but he was so scared and hurt, and all he wanted was to sit with his dad for a few minutes. That little bit of cuddling and soothe-talking was all he really needed. It made me feel some sense of self-worth again, and I was able to go to sleep.
We’ve all heard the phrase, “it takes a village to raise a child.” So where’s my village? He’s in school part of the day; that’s one aspect of the village. My ex-wife’s parents are helpful, but can never be as helpful as they’d like to be, living 90 minutes away. And their moral support means a lot; that’s another aspect of the village. But there’s no respite. No one to take him out when he’s restless. No one to come over and play with him. That’s a pretty sparse village, if you ask me.
And I get it. I’m no one’s best friend. I’m not the best uncle. I’m not the best at giving of myself to others. I can’t blame people for not wanting–or even knowing how–to help. But at the end of the day (and throughout the night), I–am–spent. I can’t always reciprocate favors, or even friendship for that matter. Sorry.
I’ve given up asking people for help. They usually can’t or don’t know how or simply don’t want to because their schedule can’t be interrupted. I suppose I could pay people to come play with my kid. But there’s still an issue of teaching someone about F. What he can eat, what supplements to give him at what times, how to change a poopy pull-up on a 7-year-old boy, what his signs mean, how to help him calm down in the event of a melt-down and so on.
Parenting, special needs parenting in particular, is tough. No, it’s more than tough. I can be really fucking terrible sometimes. But as hard as it is, it can also be so simple at times. There are those moments of peaceful ease–like comforting a crying boy who fell on his arm at the playground–that make the hard times seem OK. I guess all I can hope is that the simple and good outweigh the difficult and awful.