tag:blogger.com,1999:blog-9875218.post6413507070767539246..comments2023-10-25T07:35:16.501-04:00Comments on Elizabeth Ann: DystoniaUnknownnoreply@blogger.comBlogger5125tag:blogger.com,1999:blog-9875218.post-92016242177276699252011-05-21T22:08:51.818-04:002011-05-21T22:08:51.818-04:00Hugs to you! You are an amazing Mom - focus on al...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!<br />xoxoCris and Lizahttps://www.blogger.com/profile/00067337311081299292noreply@blogger.comtag:blogger.com,1999:blog-9875218.post-82234483463649812132011-05-11T20:59:52.670-04:002011-05-11T20:59:52.670-04:00Recently Sebastian has been really moving his left...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.Kara Melissahttps://www.blogger.com/profile/02890986548073869928noreply@blogger.comtag:blogger.com,1999:blog-9875218.post-61350503618929024972011-05-11T01:12:47.167-04:002011-05-11T01:12:47.167-04:00I just want to give you a hug. I am so grateful y...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9875218.post-60049275005011566042011-05-09T20:18:56.801-04:002011-05-09T20:18:56.801-04:00You lay-out a doozy with this post, A. I'll t...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). <br /><br />It is exceptionally difficult to retain mental control over motor control. Neurologically the motor system is supposed to become automatic or without thought, subcortical. <br /><br />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). <br /><br />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. <br /><br />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 - ? <br /><br />This product looked more effective than dycem: <br />http://www.mygripsolutions.com/<br /><br />Press an OT for more ideas. <br /><br />Drinking from a covered cup for the foreseeable future seems a small trade-off for spills that cause vomiting and guilt. To me.<br /><br />More interaction with Holly, Caleigh's mom and Glenda at Do It Myself - ideas and emotional support. <br /><br />Hang in there as you are a wonderful Mom and Lizzy is fortunate to be your child. <br /><br />BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9875218.post-32681372298306774892011-05-04T22:10:10.007-04:002011-05-04T22:10:10.007-04:00Doncha love how simple parenting a preemie is?
I...Doncha love how simple parenting a preemie is? <br /><br />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. <br /><br />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.Sarahhttps://www.blogger.com/profile/09786711719995952934noreply@blogger.com