It's four a.m. I reluctantly awake from my slumber to a rhythmic thudding sound. I want to pull the covers over my head and sleep for months, but I can't. I have to go to our son's room and stop him from hitting his head on the floor. Sometimes, the thuds are louder and I spring from bed when I realize I have to stop our son from hitting his head on the wall. It's almost too much for my tired self to take in. Is this really my life?
"Stop," I say, placing my hand on Elijah's back. He doesn't listen so I apply a firm and gentle pressure to make him stop. "We don't hit our head on the floor," I tell him quietly and I tuck him back in bed. He tosses and turns. Eventually he falls back to sleep and I climb back into the warm safe haven of my bed until...
It's time to wake up, time for the day to begin. Time to start all over again.
I haven't talked much about Elijah's self-injurious behaviors on this blog. I have talked about his self-biting, but I've never mentioned the head-banging. Mostly because it hurts so much. Elijah cannot tell us what he wants or needs and so he hurts himself. And my heart breaks about a million times a day. It's emotionally and physically exhausting to stop your child from self-destructive behaviors all day long. It's not a hurdle I ever thought we'd need to jump.
I find myself thinking This is the hardest thing I've ever had to do.
The good news - and there is good news! - is that the more opportunities Elijah has to talk to us, the less he hits his head on the floor. It's not like he's trying to misbehave; Elijah is desperately trying to tell us something. Banging his head on the floor is his way of communicating; it's just not the way we'd want him to do it. Um, obviously.
Those talkers we have around the house? They're helping. The school district has helped us figure out where he goes to hit his head the most often. Now instead of hitting his head on the floor, he can use his talkers to tell us he wants to go downstairs, to ask us to open the door to our laundry room, to go outside, to call out "mama...dada" in his room, or to tell us that he's hungry or thirsty. The talkers have helped, but they haven't caused the behaviors to stop altogether. He still hits his head when he has something to say and there isn't a talker readily available (or when he just doesn't want to use it). It's hard to give him all the opportunities he needs to speak because we can't read his mind.
Often in the middle of the night, we wake up to the sound of his head hitting the floor. That hasn't stopped. Just recently, however, we will awake in the morning to the sound of one of his talkers saying, "Mama!....Dada!" Hearing him call out to us (even if it's actually my recorded voice) is music to our ears. It's so much better than thud-thud-thud. It's an obvious and definite improvement. We are getting there (that's 50% less head-banging associated with sleep if you think about it!)
It is hard for me to write this. It hurts to admit that our child hurts himself. My hope for our family is that we can find a way for our son to effectively communicate with us so that we can say good-bye to these behaviors (the head banging and the self-biting). I do believe we will get there (we've already come a long way). I write this because if I just share the good stuff, like Pablo Elijah or pea soup face, people don't get an accurate picture of what it's like to live in Elijahland. Sometimes, it's really hard to be here. Sometimes it's difficult for Elijah to live in his own body, difficult for him to connect with the outside world. I write this because somewhere there is a mom, just like me...feeling desperate and sad about her child's behavior. And you, my friend, are not alone. I'm here with you. I wish you didn't know what this feels like, but it's nice to know we're not alone, isn't it?
Please, please, please don't take your kid's communication for granted (or your own for that matter!). I'd give just about anything to hear our son call out "MAMA!"... even if it was annoying, even if he did it a million times a day, even if I just wished he'd be quiet once in awhile. Anything to hear his sweet voice saying my name instead of thud. Just about anything.