Wednesday, May 04, 2011


Lately Elizabeth's dsytonic movements seem to be at a high. I really think she must be growing because she is a bit agitated, very restless, awkward and she often is mentioning pain in her legs. Lately I see more dystonia than ataxia; when she holds my hand when we walk there is a constant twitch/pull and her left arm is up when she walks. I see the pull it has on her body and I fear when she gets older what damage her spine will have due to her twisting when she moves.

Her movements are uncontrolled causing lots of spills, dropping her utensils and knocking things off the table. She very often unintentionally hits whoever is close to her with her flying arms. Most often we say oh well and keep going, we do try to get her to be aware of her space, remind her to pay attention to what she is doing and we are calm as it is not completely her fault that these things happen.

But on days where I am in a rush to get out for work or an appointment I am not as calm because I don't have time to deal with a big spill and a complete change in clothes. This week after drowning me in grape juice in my freshly ironed outfit for work she knocked another drink over and soiled her clothing. I cringe now for how I yelled at her and made her sit on the stairs while she sobbed and wretched up her breakfast. I hate that I was so angry at her because of something she cannot control. It also makes me wonder how others respond to these accidents as I have heard some comments from school about her movements. I can see how children can get frustrated with her as always knocks over the game we are playing with her flying arms and legs.

I just don't know how much ownership we need to give Elizabeth with her accidents. She does help to clean up her mess but a fair amount of these accidents would not occur if she were to pay attention. We have tried to minimize her accidents with appropriate seating and non-slip mats. I know I cannot scream at her like I did and I don't want to punish her but she is 6 now and I don't know if she does need some ownership for her accidents.


Sarah said...

Doncha love how simple parenting a preemie is?

I can't help you with the movements because Emery doesn't have any dystonic movements, but we wonder that, too, with giving him ownership of the ramifications of his tantrums, which we have no idea if they are food related, autism related, growth/pain related, sensory related, etc. Oh if I could just stop the screaming.

Are you able to tell if some of her accidents are simply from not paying attention? I know our kiddos tend to be pretty scattered and unable to contain themselves.

Anonymous said...

You lay-out a doozy with this post, A. I'll try to stay focused on 2 tracts (not meaning to be stingy but only so much can go in a comment).

It is exceptionally difficult to retain mental control over motor control. Neurologically the motor system is supposed to become automatic or without thought, subcortical.

Lately I have taken to giving a succinct 'lecture' on the ineffectiveness of verbal cues to children for certain movements (like heel down during walking).

Believing in this I throw my vote in for even more analysis of adaptive equipment, set-up and positioning to reduce spills and allow her the freedom to think about other things than how to control her body.

How about videotaping her just for analysis? Perhaps if you view it later you will see solutions you cannot think of in the emotion of the moment - ?

This product looked more effective than dycem:

Press an OT for more ideas.

Drinking from a covered cup for the foreseeable future seems a small trade-off for spills that cause vomiting and guilt. To me.

More interaction with Holly, Caleigh's mom and Glenda at Do It Myself - ideas and emotional support.

Hang in there as you are a wonderful Mom and Lizzy is fortunate to be your child.


Anonymous said...

I just want to give you a hug. I am so grateful you posted this because I've been feeling awful since Sunday when I yelled at my 6 year old son for spilling his milk at dinner and made him cry. He has mild CP (spastic diplegia) and it was mainly my fault because I gave him a cup that is easy to tip over instead of the low stable cup I ususally do. Usually I take these spills in stride but that day I lost it. I apologized afterward and he forgave me but I always feel terrible after an episode like this. Please know you're not alone and you're a great mom, and thank you so much for sharing your story. All we can do is do better next time.

Kara Melissa said...

Recently Sebastian has been really moving his left arm up to his face and in his mouth, sometimes intentional and then he bites his fingers, gets upset and it doesn't stop. So I think it's a dystonic movement. It's curious that you mention a growth spurt with the movements, maybe that's the case with Sebastian. I understand your frustration. Sebastian was doing it over and over during dinner and I know he wants to try to feed himself but he is also hurting himself so I had to hold his hand down. I felt tired and frustrated but whenever I change my tone of voice he just laughs at me and then I start laughing too. Hang in there, you will figure it out.

Cris and Liza said...

Hugs to you! You are an amazing Mom - focus on all of the amaziness you bring to Elizabeth's world - she is one lucky girl - and you my dear are human!