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...
Thud-thud-thud-thud-thud-thud .
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.
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14 comments:
Lisa.
After looking at the pea soup face it is sometimes hard to believe it is the same Elijah. But, of course I have observed it numerous times myself.
I am glad you can focus on the positive most of the time instead of this negative behavior.
It is a world most parents never enter.
You do so well Lisa and so do so many parents with special needs children. May God give you all the strength you need on your daily journey.
Love from your Dad
Nothing I can say will help but here's a ((hug))...hang in there, girl!
Oh gosh, well I am glad it appears to be getting better. Poor guy...so much to say -- but in the middle of the night? YIKES That would be a scary thing to wake to.
I'm glad you DID decide to write about it, I think others need to learn & understand more about our kids & our lives...all in the name of awareness. *sigh*
Thanks for sharing Lisa, you are amongst people that care about you and your family so its good to share our struggles in a loving, supportive group. As difficult as it is, he is smart and resourceful to figure out how to communicate even when he may feel trapped and frustrated at times....even though its hard to see and it may hurt him, it shows me that that he is strong and determined to work with his limitations... And he is smart to be able to use those talkers....and you guys are smart for utilizing them :) All I know is that bit by bit you guys are all working through it, you are great parents that care and are in tune to your little man that needs you. He has already moved in leaps and bounds ( literally as that boy likes to run and jump :)) We are all here for you when you and in our prayers :)
Karen Lausted
Thank you for writing this. It is somehow comforting to know we are not the only ones going through such difficult times.
Thanks for sharing the "worse" along with the "better"! It's important and these kind of posts is often what helps other moms the most. Katie used to lay down and bang her head on our HARDWOOD FLOORS (YIKES) when she was almost two...before she had any words. It was purely out of frustration and so, so sad to see. I found it really disturbing. I just wanted to cry every time she did it. She stopped doing it after she was able to say some of the more important words (for her). I hope that once Elijah is able to communicate a little bit more he'll stop. Hang in there. I wish I had more advice for you, but I really didn't know what to do myself.
Love, support and prayers come from your mom and Gramma. :)
We are workign through the self-biting--identifying the behaviors that trigger it and trying to minimize them. Still. . . it's tough to watch your child hurting themselves.
What an amazing and brave post. Your pain came through loud and clear. It must feel horrible to watch your child hurt himself, all in the name of trying to communicate. But I love that there is LIGHT ahead----the talkers are helping, and you have a measurable amount of how much less he is hurting himself! I look forward to an update post in a few months time...I'll bet it will have dramatically decreased even more!
I am so sorry to read your post. Waking up to hearing your son bang his head on the floor is horrible to hear. My daughter at 5 is still up frequently but she can tell us what is wrong and we can help her. To not know what he is trying to tell has to be so hard.
My daughter did that. She used to bite herself, she hit herself, she did bang her head on the wall and the floor. I think you are right. They are just trying to communicate. I of course have no idea what you are in store for, but I felt the need to share with you that my daughter doesn't do it anymore. The older she gets the more she can communicate and cope. Also last Saturday she came up to me and said "Mom." There is hope.
LJ doesn't bang his head on the floor but he "head bangs" (since he's immboile...I often wonder if he was mobile would he do that?)
It looks like he could give himself whip-lash. Sometimes it's in his chair, while he's eating so he's banging his head against the head rest. Sometimes it's in his stander and I just cringe at the position his head is in. Sometimes he's laying down on the ground and he'll lift his upper body up then DROP. ughh. He does it while we're working on sitting too, against a wall. But for some reason he seems to register that as pain so after he does it a few times, he usually quits.
It IS so hard to watch them hurt themselves. We still struggle with the biting (I'm still hoping a lot of that is teething since it takes FOREVER for them to come in).
I'm glad it's decreased for Elijah, and hopefully he'll soon find no need to communicate that way!
I don't think I've ever identified with a post as much as this one. I've lurked for months on your blog and today I could not resist responding. First huge hug, second you do your best and that's all you can do and Elijah is doing his best as well. I have a 3 yr old special needs toddler, who has Apraxia, lack of speech. he's been in Speech therpay, OT and PT for over a year now. He signs some and has made verbal progress, unfortunately (just being honest here) that doesn't mean sentences, but imitation is the first form of verbal communication. And I don't take any of it for granted. One Sunday night, I was in Walmart, tired, cranky and distracted (me, not my son, lol) and I heard a lady yell at her twin 3 yr old girls, "would you two just shut up, I wished you'd never say another word, I hate listening to you both". The girls burst into tears and so did I, normally I am quiet and mind my own business. But it was after 8pm at night, everyone was tired, but those words that mom uttered, just hit me in the gut. And I walked up to her and said "while I am sure you've had long day, I'd give anything and I do mean anything to hear my son say a single world, just one word". I said this with silent tears running down my face and walked away. And to this day I feel the same way.
Jen
tesnjen at aol dot com
Thank you so much to each and every one of you for your kind comments. It is so hard to write about the difficult times, but I'm always so glad when I do. Not only to get it off my chest and let it go, but also to help others not feel alone - and to educate those who don't know what it's like to wear my (our) shoes. All around - sharing is a good thing. :) Your support lifts me up when I feel like I'm all alone in this sometimes difficult journey. (Which of course I'm never alone, but sometimes it can feel that way). Thank you.
P.S. These behaviors have decreased even more since I wrote this post! I should write about it soon.
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