Autism kicked me in the ass today. Some days are just like that, and you are left wondering at the end of it, “what happened?” You’re trying to think, "what was different today? Did he not sleep well? Did I screw up his meds? Is there some mysterious sensory thing setting him off? What is it?"
Yes, today of all days was one of those days. I endured intense hyperactivity ALL DAY. Whining and crying. Nonstop fighting with his sister. Intense obsessing over every little thing. “I want this” and “I want that”, and not being able to let it go. Whining and crying. Sneaking outside, into the front yard, and up into snake filled forest and refusing to come back. More whining and crying. Pulling on the dog’s collar. Then, when we had to make a quick trip to the grocery store, refusing to put his seat belt on, pulling at my hair from the back seat while I’m driving, throwing objects through the car. Refusing to get out of the car, leaving me standing at the side without many options but to wait it out, lest I be kicked if I go near him. Causing an embarrassing scene in the grocery store, and then in the restaurant. And on and on and on. Nonstop. All day.
The last month or so, we’ve had a lot of these bad behaviors. It’s been tough without structure and routine. That’s our summertime. Daddy is not here. Liam takes his worst behaviors out on Lilah and me.
And I feel bad, for him and for us. On days like this, I just hate this monstrous affliction that is autism. I wish I could make it go away. It sucks. It’s hard. It’s exhausting. And most importantly, it’s not Liam’s fault. He is still my sweet and precious little boy who I love to no end. I know my sweet and loving boy is in there. Yes, that boy who says he’s sorry and tells me he loves me and that I’m his best friend. That boy, Liam. Please come back Liam.
When I finally got him to bed, he fell asleep quickly, and I just started to sob. Crying is not something I succumb to very often. We warrior mom’s have to hang tough through it all. And tonight I thought, how do we do it? Autism is so hard and relentless. We do it because we have no choice, and because of the immense love we have for our children. But it still sucks, especially on days like this.
And of all days, today, the day we are launching our project on PledgeMusic. There was a lot of work I had planned to do. I got some of it done. Some of it, I didn’t. That’s alright. Tomorrow is another day, and it happens to be the first day back to school. We have to be out the door very early, but I’m about to win a little bit of my sanity back.
I feel kind of sad because I wish I had spent more time today happily anticipating my girl Lilah’s first day of middle school. I know she’s nervous. It’s a big deal. Lilah handled our intense day with so much maturity and grace. I hope she knows how proud I am of her. I try and tell her a lot.
If you have a dear friend or family member who is parenting a child with autism, just know this. What they go through on a daily basis, you will probably never be able to understand. Just know that their everyday is filled with emotional chaos, and it’s totally exhausting. And for that matter, all kinds of chaos. We are constantly trying to keep our kids out of trouble and danger. We warrior moms just have to keep calm and carry on, as the Brits say. And some days, we’ve just had enough and we have to cry. A lot of us get our own therapy from writing our blogs. We vent to ourselves, sometimes the world, and we’re ok after that.
And now that this intense day is coming to an end, I finally get the chance to sit down and read all about how our first day on PledgeMusic went. Looks like it’s gotten off to a good start. It warms my heart to read all of the encouraging comments and well wishes. It means so much to us to be a part of this community of people who care about people with autism spectrum disorder.
We have a lot of great stuff we’re working on that we are very proud of. We’ll be sharing a lot of it with our pledgers in the coming weeks. Thank you, thank you, thank you so much for your support!
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