[blindkid] Help with PT and OT Meeting

Mon Mar 26 18:21:05 UTC 2012

Debbie,

As I read your comments, I sort of flash back to Kendra's younger days, and I quickly recall how much especially the youngest version of Kendra liked to get into small spaces where sounds bounced around differently and where Kendra could feel all sides of little alcoves and the like.

I also recall several times watching Kendra sort of transform from a happy playful child in a huge quiet room, into a frightened child in virtual "shutdown" mode if the room got too loud. Once in particular, she was in a large church that was empty before an event and she was in a great mood. As people came in, Kendra slowly got more and more quiet and still. Over 30 minutes or an hour, the room filled with several hundred people.  She was like a car on the freeway coasting to a stop and then being turned off in the middle of everything around her. Once the room reached an overwhelming level of noise, she suddenly got upset and basically had to be removed. Once out of the noise, she was fine again.

What happened made sense when we stopped and thought about it. She has no vision at all, so nearly all the information she had about the room was from sound. She was no more than about 3 years old, so she didn't have enough experience to really understand her surroundings yet intellectually. It was probably the equivalent for a sighted child, of in a matter of minutes, temporarily loosing all vision and hearing in such a place, and there was a ton of unfamiliar sound as well. She was simply overcome.

As a parent, it isn't t a situation to panic about though, and in fact most kids learn to deal with situations like this better and better over time. It is about gaining experience, and it sounds like that is what the little rooms are designed to help with. The rooms are basically the complete opposite of the giant room where we had the big "shut down". We experienced this numerous times. Each time it was a similar event. Applause, even in a smaller room, had a similar overwhelming, disorienting (and upsetting) effect on her.

Another thing that Kendra likes, and I know this may sound odd, but she likes to go inside small, empty closets. At my mother's house, she found an empty closet. Once she knew about it, she would go into the closet and close the door behind her every chance she got. Kendra would occasionally crack the door (or just shout through it) requesting snacks be sent it. If you'd get her to come out, often she'd want to go right back in. To her, this was just a great little playroom!

We never officially tried our the "Little Room", but I think we got a pretty good idea about how it works in bits and pieces. 

Sounds like a great idea.

On Mar 26, 2012, at 10:39 AM, Deborah Kent Stein wrote:

> 
> 
> Dear Sarah,
> 
> Dr. Nielsen prefers to lay the child on a solid surface so that a dropped toy makes a sound for immediate feedback.  Her Little Room is designed to minimize superfluous sound from the outside and to give maximum sound feedback as the child moves or plays.  The floor is a "resonance board" made of an especially resilient wood from Scandinavia.
> 
> At one of Dr. Nielsen's conferences I actually tried sticking my head into the Little Room to find out if it would mute noise from outside as she claimed.  The difference was amazing - I was in a large auditorium full of people all talking and moving around, but inside the little room those sounds were far away.  If I rattled a metal measuring cup or pulled apart some Velcroed blocks, those were the sounds I heard.
> 
> Until a blind child starts learning how the world works, she is constantly surrounded with sounds she doesn't understand.  If a door slams she can't look over to find out what just happened; she just hears a disembodied bang. Only when she begins to make sounds happen herself will she start to grasp the concept of cause and effect.  When she drops a toy on a blanket or carpet, she doesn't hear it land, but if she drops it on a hard surface she hears it and can learn to find it again.
> 
> The idea of Active Learning is for the child to learn by doing. The Little Room allows her to discover that she herself can make interesting things happen.  For blind children, the ability to produce sounds and track down the source of sounds helps to compensate for the lack of visual incentive and feedback that Richard explained.
> 
> Debbie
> 
> 
> 
> Debbie
> 
> 
> ----- Original Message ----- From: "Sarah Dallis" <sarah.dallis at gmail.com>
> To: "Blind Kid Mailing List,(for parents of blind children)" <blindkid at nfbnet.org>
> Sent: Monday, March 26, 2012 5:12 AM
> 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>
>>>>> ______________________________**_________________
>>>>> blindkid mailing list
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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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