[blindkid] please respond

Tue Apr 14 16:48:10 UTC 2009

Dear Tina,
I don't know of anyone in public schools specifically, and those I have
known of with autism and/or non-verbal often have the same questions as you.
Rene Harrell, parent POBC of Colorado president, is a great resource but one
of her children has had serious medical needs and she may not have the time
to respond right now. Hopefully in time she will if she has not written you
privately already.

My main suggestion would be to learn what works well for children with
non-verbal, autism and epilepsy who are sighted. The same therapies and
teaching techniques only altered to be non-visual if they are presented
typically in visual format are what should work for your child too. Are
sighted children with these conditions reading? How? What instruction
techniques are used? With manipulatives and Braille could not the same
reading instructions be used?

 Children's case studies and teacher/parent stories I have heard all tell of
very intense, hours a day spent to get reading words for a child who has
very significant other disabilities. Some are not able to read even words
but can do activities and some self help/care. I know of one non-verbal
student (now adult) whose mother got him a job setting out the milk cartons
at a private elementary school during lunch. He loves school and loves going
to this work everyday. He also loves to crush cans and could crush them all
day. The mother looked for a job that fit him and had a unusually good
vocational counselor who agreed and was supportive. Typically they would
have had him assembling something mindless like dropping nails into a can
all day or something and hating it. Most kids who "make-it" that I have
known who have significant multiple disabilities had exceptionally
extraordinary parents who worked with Olympic efforts hours and hours daily,
often ignored  or certainly went way beyond the professionals, and never
gave up on trying even when there seemed to be little or no result. 

What is done in the 69 hours? Could there be better tactile access to
activities done during this time? Is there enough tactile and or sound
stimulation? Do you see attempts by your child to communicate some way?

What is the "vision" 90 minutes per month? Just that time allowance for
anything for any child--what can be gained from 90 minutes a MONTH? What
does your child retain from such infrequent exposure?

Have any communication devices been tried? Why not? A good resource is the
PACER center in Minnesota. www.pacer.org. I advise calling them and first
find what would be done or recommended for a child with these conditions who
is sighted.

My Best to you,

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Tina Egle
Sent: Saturday, April 11, 2009 9:14 PM
To: NFBnet Blind Kid Mailing List,(for parents of blind children)
Subject: Re: [blindkid] please respond

> Hi carol,

thanks for responding quickly.  Right now Justin gets OT,Pt Slt 2x per wk,
vision 90 mins per month and no communication device given to use at all
times. At home he gets 69 hours of therapy from Clearbrook organization.

help!!!! Tina
>
> I am not aware of any such families at this moment, but I will try to
> see if others in my state do.
>
> Tell us what kind of services your child gets now.
>
> Carol
>
> At 10:45 AM 4/11/2009, you wrote:
>>Hi,  Any family with a son or daughter about 12-15 years of age, who is
>> non-
>>verbal, austistic and epileptic going to public school?  I would like to
>>chat and find out how hard is it to get appropriate services especially
>> to
>>teach braille and get enough hours out of vision therapy.
>>
>>TE
>>
>>
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>
>
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