Autism and the End of Mom’s Patience

When I was younger, I was impatient and I had a temper. While I had learned to mostly control it before I had kids, having them and living with autism taught me even more that most of the stuff I got upset over really wasn’t any big deal. I do still have very little patience for some things (slow drivers and rude people!). I let most things slide. It’s just not worth getting upset over.

That being said, last week, my little angels tried my patience. I’ll admit it (even though I know it’s politically incorrect and I’m not supposed to and all that happy crap) – they got on my last nerve. And before anyone thinks it was because of the stay at home order, nope. They were just being turkeys.

Tuesday, Rob started his “song” and repeated it for more than 8 hours. He didn’t seem to be upset – he was just talking. Honestly, I didn’t really hear him. I’ve gone deaf to his “long black train” phrase most of the time. It’s just part of him and what he needs to do to stay anxiety – free. It’s his verbal stim. When he gets loud saying it, I know something it wrong – usually the weather. So I basically heard it about 2,000 times that day. But, I really didn’t hear it, if that makes any sense.

We went for our walk and did some fun things Wednesday morning. About 2:00 that afternoon, he started again. I didn’t pay any attention to him until about 6 and I’d had enough! I just couldn’t take hearing that damn phrase anymore. I tried everything I could think of to distract him. Again, he didn’t seem to be upset – just stimming on the words. By 8, I was ready to scream or cry. He took his shower and had a snack and I thought maybe it was over. I had about a 20 minute break before he started all over again.

The thing is, I have to stay calm when I’m talking to him about it. I tell him he is hurting Casey’s ears and I’ve heard it enough. If I raise my voice, he immediately starts getting louder because his anxiety has gone through the roof because I am mad. I truly do know that he simply can’t help himself sometimes. He is just stimming – just like others flap their hands or spin things. But – after 8 hours of it the day before and almost 7 hours that day, I was done. You cannot imagine how done I was. I never thought it would end. At 9:15, I told him good night and that I loved him, thinking there was no way he would sleep that night. It was like someone flipped a switch and he was asleep. Silence. Oh my God – the silence. I actually stayed up later than I usually do just enjoying the silence.

I was really worried he would start in again on Thursday, but while he said it in the car coming home from the park (he has to say it when we get in the car to head home from anywhere) he stopped when we got home. It was truly amazing! I told him thank you for no long black train – he looked at me like I was crazy. 🙂

So everyone went to bed Thursday night and about 1:30, I woke up to discover Casey’s bedroom light was on. Usually, if I turn it off (there is a switch at the bottom of the steps) she jumps in bed and stays there. I turned it off, heard her jump in bed and went back to bed myself. About a half hour later, I rolled over to see the light was on again. And I was not happy. I went up the steps and told her to get back in bed – NOW! She giggled and did it, but I heard her (her bedroom is right above mine) dancing and thumping around all night. She was downstairs before 6:15 listening to music and giggling.

So we had to have a discussion about where she is supposed to be when it’s dark. “In da bed!” Yes, Casey. You cannot dance around all night. “Reagan!” Yes, Reagan is coming today. So – I don’t know if she was just so excited about seeing Reagan or the weather was messing her up. But – when she decided to sleep on the couch, we had another discussion about how she was NOT going to sleep all day! 🙂

So, yeah, my patience was tried last week. I still don’t know the “why” of either of the days. I have no idea why she didn’t sleep. I don’t know why the second day of his song about drove me nuts when I barely heard it the first day. I am proud of myself for not yelling and losing my cool in front of them. I am glad I controlled my temper. (I was having a fit inside my head, though! 🙂 )

Everyone that knows me knows how much I love my kids. All of them are my world. And sometimes, they drive me nuts. Parents are made to believe that they should never admit their kids are driving them crazy. We are supposed to shine rainbows and unicorns all the time and be happy, happy, happy. But – you know what? Being a parent is hard. Being a special needs parent is hard. And being a parent during a virus-driven-stay-at-home order is the toughest of all.

It’s okay to admit your kids make you want to scream at times. It’s okay to not care if their school work or chores get done that day. It’s okay to just say the hell with everything and just make it through the day. Just because they drive you crazy doesn’t mean you love them any less. So, give yourself a break. Take a breath and have a piece of chocolate or a glass of wine. Tomorrow is another day. 🙂