Cerebral Palsy, Our Son, Parenthood, Toronto

Helpless

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Although this photo was taken nearly two years ago, it represents an ongoing struggle. Sometimes Sebastian tries to suck his fingers. Sometimes his dystonic movements bring his hands up and his fingers find their way into his mouth. I would have been happy if Seb could suck on his fingers, especially to sooth himself. Instead his jaw contracts and he bites down hard. The worst part? He cannot unclench his jaw and he panics in pain which makes it worse. This happens with his tooth brush, spoon, and it used to happen with toys when he was younger and still into mouthing objects. Sometimes he bites his lower lip or the inside of his cheeks. Sometimes he draws blood. Other times there is an indentation left from his sharp tooth. He has even recently pulled his glasses down into his mouth, and if we aren’t nearby, this can be disastrous.

We have little tricks to help him. The most necessary being to stay calm. I apply pressure on his upper lip with one finger. I pull his head forward, creating a half fetal position, helping him to relax his muscles and release. We say ‘ahhhh’ and try to get him to mimic us. In emergencies I put my finger on his lower jaw and use force, although this doesn’t usually work. It can cause more panic. I do it anyways as I feel so helpless, I want to do something. If it is not an emergency we can wait and he will relax and let go.

I have a fear that he will bite through his finger. Sometimes he just lets go on his own. But trauma, tears, broken skin and blood remains. Sometimes, it happens when I am driving. And I can’t reach him or pull over soon enough. And staying calm is the hardest part. I struggle to keep my tears back. Since he can’t easily control his jaw muscles, his tone takes over when he’s upset, making the muscles tight. Getting them to relax often couples with him relaxing. Imagine you are biting your finger and cannot stop. The pain and fear. Not so easy to relax.

Monday afternoon we were on our way home from physical therapy. We had a snack before leaving as we would be headed into rush hour traffic. The highway was starting to get backed up so I decided to exit early and take another way home. As we exited and stopped at the light I heard sucking, then a panic sound, then screaming/crying. I turned around and Seb had his right pointer finger stuck in his mouth. Picture us in the middle of four lanes of traffic with no where to go. I started to panic. I couldn’t really reach him. I put my hazards on and prayed I could get him free before the light changed to green. For both safety and the angry/confused drivers which could ensue. Just as the light changed he released his finger. He continued to cry hysterically as I drove another five minutes before I found a place to pull over. Meanwhile, trying to put my hand back and keep him for biting again, unable to reach. Being upset can also bring on dystonic movements and sometimes his hand goes right back in.

Once I found a place to stop, I got out and tried to calm him, while checking his finger. It was bit in three places and bruised but not bleeding. It took twenty minutes to calm him but he still cried as I pulled back into traffic. I had to wrap his hand in his sweatshirt so he wouldn’t bite it again. If I even mentioned keeping his hand away from his mouth, he burst into tears. Eventually he cried himself to sleep and we arrived home ten minutes later.

In March when Seb was sick, he was having more dystonic movements than usual because he was so tired. He bit his left thumb three times in the course of the week, re-breaking the skin each time. He started to hide his thumb under his fingers in a fist all the time. Protecting it. But also not using it, making the muscle tight. He had to start wearing a small thumb brace at school to help him open his hand and use his thumb again.

Remember his new glasses? He got his old ones stuck and scratched them up so badly with his teeth they were unusable. My new fear is that he will break a small piece off his new glasses (small plastic nose pads) and choke on it.

And the bandaids? We graduated from The Wiggles to Curious George and are now onto Sesame Street. We only ever need to use them for fingers.

Sometimes CP just sucks.

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6 thoughts on “Helpless”

  1. Kara,
    I know the feeling of having something happening in the car and no way to control it without risking a worse outcome. I can feel your frustration. That is why I always say those ‘Baby on Board’ sings are really meant to warn other drivers that the driver in that car will be distracted and may occasionally do odd things. This sounds like a scarey ride and I hope writing it out made you feel better.
    Lois Ann

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  2. Sometimes you need to say CP sucks. I can’t even imagine and as I try to imagine I know I am no where close to your level of fear and hurt. I know the fear of driving with Alex in back at times from when she was first born and couldn’t hold up her head to when I realized mid-60 mph that putting anything in her hair was dangerous (she put a clip in her mouth under the age of 1 as I was driving). Fear and reality are powerful and I don’t know how you manage to stay calm (and not go into labor). You are the most amazing mama and your strength is Seb’s and he is learning from your strength. Tomorrow will be brighter. Rest my friend.

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  3. It really sucks. Poor boy 😦 I wish I could suggest you a way to prevent this, but unfortunately I can’t. I really hope you manage to find it.

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