[blindkid] Help with PT one other thing.

Richard Holloway rholloway at gopbc.org
Mon Mar 26 06:34:24 UTC 2012


If there are reasons to have any further interactions when you are not present, a video of the session might be a good thing to suggest. It might be a good idea in any case (even of you are there) for later discussions or to compare with other sessions to check progress., etc.

As had already been suggested, these pt / ot relationships may not justify the effort for their own sake, but it may help with a new therapist. Also, demonstrations of concerns on tape from home might be a useful tool with a replacement specialist at a later time.

Richard

Sent from my iPad

On Mar 25, 2012, at 10:26 PM, Sarah Dallis <sarah.dallis at gmail.com> wrote:

> Many of you might not remember me, my daughter Ellie, is 18 months old and
> has been blind since birth. She doesn't walk, crawl, or stand, but she did
> recently learn how to sit up on her own. She has also started laying down
> more, I think she's tired of sitting on her butt all the time so she'll lay
> down and roll back and forth (carefully not to travel too far). She doesn't
> eat either, she gets pediasure and we have been working with speech for
> feeding.
> 
> I have a meeting on Tuesday with her PT and OT, neither are experienced
> with blind infants. I have called the meeting to address some concerns I
> have. A few specific concerns are the fact that I can't hold her hand
> anymore because of their hand over hand "therapy" methods from before
> December (they have since stopped hand over hand). Also, she no longer
> stands, my husband and I were able to get her to stand for 60-120 seconds
> if she was leaning on us or something. Once we showed her PT and they
> started working on it, she will go up to stand but promptly plop right back
> down on her tush. I sent them an email in December with new therapy
> methods, ideas, and resources for them to go to and they have never
> discussed their findings or thoughts with me on the email, just pushed it
> to the side. And finally, they do not have any suggestions for adaptive
> equipment. I'm not sure if this is common but she keeps her head down the
> majority of time, because that's where her toys are and where she usually
> plays.
> 
> Based on this and the experiences you all have, does anyone have any
> suggestions/ideas I can take with me into this meeting. Maybe it won't be
> any help, but maybe it will. I also have my insurance getting us a second
> opinion referral to a new therapy place because I'm so frustrated with this
> one. I'm ready to completely fire the PT even if I'm not impressed with the
> new place
> 
> And some additional info is that my husband and I are both active duty
> military (I'm desperately trying to separate to be home to help Ellie
> more), and Ellie's therapists are in the same facility as her daycare (I
> don't care for the daycare either). Due to the mission we're not always
> able to make it to her therapy appointments and we have allowed them to
> work with her while we're not there. They no longer have this permission,
> except feeding. I just don't feel like I can trust them to not do hand over
> hand or something that they already know is an issue based on the email in
> December.
> 
> 
> -- 
> 
> Sarah Dallis
> 
> Mom to Ellie: http://elliesgrace.blogspot.com
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