[blindkid] Help with PT and OT Meeting

[Sarah Dallis]

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