love never fails
At therapy pickup: “Noah had a good day, head bangs were pretty high though...” And I don’t really remember all she said after that. I signed our checkout slip and out the door we went.
Headed down the highway that we drive and I looked back in my rear view mirror at the most beautiful boy and just kept thinking, why? Why him? Because the truth is not everyone on this journey will experience self injury. If you don’t, consider yourself lucky. And you won’t hear me say those words often. But there is nothing more paralyzing or more heartbreaking to witness as parent than you child hurting themselves.
And this post has been a long time coming. I’ve been trying to find the words for months but I’ve always fallen short. I’ve felt I wouldn’t be able to convey how this truly feels, but I’ve decided I think it’s important to try.
When it first happens, when your child first self injures, it almost takes your breath away. The world stops because you don’t believe what you just saw. You think your mind must be playing tricks on you because this can’t be real. And so you downplay it at first. I did. I downplayed it so much because I couldn’t believe it. And then I of course thought it was a one time thing. It wouldn’t happen again, so why stress. But it did happen again. And again and again and soon enough, self injury became part of our everyday. It becomes your norm.
I remember the first time Noah hit his head outside on the cement. That memory is so painful and so vivid that’s it’s something I don’t think I will ever forget. It changed me. As a parent, as a person. Seeing your baby do that does that to you.
It left a bruise, that’s how hard he hit. I questioned whether we needed to take him to urgent care—and that has only happened twice which I’m so unbelievably thankful for because for some, bruises are a constant. Protective helmets are worn, and so much more.
When I saw that colored spot on his forehead appear I felt like I had completely failed him. How could I let that happen? But I did. And it was only the beginning. Even when I knew of autism, I didn’t know some kids do this. Like most of us, we don’t know or understand something until it becomes our reality.
And once it does, once self injury is on your radar, you feel an array of emotions. First you’re scared. You’re so scared and you don’t know what to do. You know this shouldn’t be happening and panic ensues. Then there is sadness. Your heart breaks into a million little pieces every time it happens. Then anger. You feel frustrated and you think maybe if I’m just tougher as a parent it will change, but it doesn’t. Then there’s helplessness. That you can’t do this forever. How will you? You’re not strong enough. But, you then learn you are. And you “accept” and you accommodate and you work like hell for your kid. You do whatever it takes to help them find a better way.
And you do, you learn all the ABA tactics and therapies. The four functions to a behavior. The reason he head bangs when he’s upset. And you learn what works. Its never ending trial and error, and sometimes it’s a very slow process. But as the data shows, he’s getting there, we’re getting there.
I can’t imagine being so overwhelmed or so upset that hitting your head to the ground is the better alternative. But we’re trying. We’re empathetic. We’re patient. And we’re here.
We’ve been watching Noah does this for over a year now. And each time it happens it doesn’t get any easier. It can happen in a moment too. There are quite a few triggers that can make Noah drop to the ground in an instant. Sometimes our life can feel like walking on constant egg shells. And no matter how much we try to prevent it, it happens. His triggers can be me talking or walking into another room. And bam, he’s down. It’s pretty overwhelming at times because we need to do these things. It’s just life.
And this is ours. While it’s not easy and the worries continue to grow. Worrying if one day your kid could actually hurts themselves seriously. Worrying for the future and what if it doesn’t go away. The unknowns are a place I don’t go too very often. The fears for Noah’s future could literally swallow me whole. So I don’t let it.
Now is now. And right now, head banging is on a downward trend. Right now he spends less time in a padded room at therapy than more. Right now there are times he actually stops himself, which is unbelievably huge. Right now I’m not stressing about the future nor the things I can’t control in life. And right now, I’m just loving the heck out of this boy, because really, love is the only thing we all have that will never fail us.