[blindkid] Help with PT and OT Meeting

Mon Mar 26 11:35:51 UTC 2012

It has to be like a playpen or a box -- something with sides on it.  You 
need to make the space around her much smaller than the actual room.  A 
blanket does not really give her the feeling of security because you can 
easily fall or roll off a blanket.  When we adopted our twins, for the first 
month or so one of them was only happy in a car seat box with some toys. 
That closeness of short walls also provides them with the means to pull 
themselves up if they wish to interact with people on the other side without 
physical contact with a human holding them up.
Barbara

Poetry is an echo, asking a shadow to dance. -- Carl Sandburg
-----Original Message----- 
From: Sarah Dallis
Sent: Monday, March 26, 2012 5:12 AM
To: Blind Kid Mailing List,(for parents of blind children)
Subject: Re: [blindkid] Help with PT and OT Meeting

We don't have a room per say but we don't have her nicely surrounded by toys 
while she's on the floor. She has a blanket on the floor (because she 
doesn't exactly like the carpet and it has just enough room for her to sit 
or lay down. Is this sort of what you're talking about?

Sent from Sarah's iPhone

On Mar 25, 2012, at 11:09 PM, "Heather Field" <missheather at comcast.net> 
wrote:

> Hello Sarah,
> I applaud you for getting a second opinion and looking for other 
> therapists. It's clear these current folks do not respect your opinions or 
> your input. I would certainly fire them and move on. Evidence is showing 
> that your daughter is being harmed, not helped, by their intervention. I 
> don't mean to be negative but I really don't believe that you will 
> accomplish much by meeting with the current therapists. I encourage you to 
> go looking for new people who will believe in your daughter's abilities.
>
> I believe that you and your husband could make a Little Room playspace for 
> your daughter yourselves. Your therapists have had time to do it and they 
> haven't, so I would try it yourself. I believe there are some plans 
> floating around the internet. Perhaps someone on this list has access to 
> them. Perhaps if you Google it you can see enough pictures to make it. I'm 
> sure pvc piping from your local hardware store could be used for the 
> frame. I would love to speak with you. If you would like to chat, email me 
> off list with your phone number and we can talk and I can give you very 
> specific advice.
>
> Warmly,
> Heather
>
> -----Original Message----- From: Sarah Dallis
> Sent: Sunday, March 25, 2012 9:48 PM
> To: Deborah Kent Stein ; Blind Kid Mailing List,(for parents of blind 
> children)
> Subject: Re: [blindkid] Help with PT and OT Meeting
>
> Thank you Deborah! This was in my email to them in December :)
>
> On Sun, Mar 25, 2012 at 10:45 PM, Deborah Kent Stein 
> <dkent5817 at att.net>wrote:
>
>>
>>
>> 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<http://elliesgrace.blogspot.com>
>>> ______________________________**_________________
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>>>
>>
>>
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>>
>
>
>
> -- 
>
> Sarah Dallis
>
> Pampered Chef Consultant
>
> Order 24/7 Online: http://www.pamperedchef.biz/sarahdallis
>
> Mom to Ellie: http://elliesgrace.blogspot.com
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