[blindkid] Help with PT and OT Meeting

Deborah Kent Stein dkent5817 at att.net
Mon Mar 26 02:45:30 UTC 2012



Dear Sarah,

It sounds like Ellie might benefit greatly from the work of Dr. Lilli
Nielsen, the Danish educator who developed the Active Learning approach for
work with young blind children.  The idea is to place the child in an
environment that encourages curiosity and exploration.  She has published a
number of books and articles, and designed several pieces of equipment.  The
best-known is a self-contained environment called the Little Room.  You can
learn more about Dr. Nielsen's work at www.lilliworks.org.  I hope this
helps!

Debbie



----- Original Message ----- 
From: "Sarah Dallis" <sarah.dallis at gmail.com>
To: <blindkid at nfbnet.org>
Sent: Sunday, March 25, 2012 9:26 PM
Subject: [blindkid] Help with PT and OT Meeting


> 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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