[blindkid] Putting pressure on the school district

Tue Mar 17 20:00:28 UTC 2009

Karen
We are trying to get Braille written into our 4-yr olds IEP. She was 
born in Guatemala with congenital cataracts. Cataracts taken out and 
false lenses put in at 4-1/2 mos old. Supposedly, low vision therapy 
done but have no info/documentation on that. When we got her home at 
almost 2 yrs old, we took her to Bascom Palmer in Miami. Torrie also has 
nystagmus, strabismus (esotropia), light sensitivity and myopia. She 
also does not have convergence and is using the bridge of her nose to 
see with only 1 eye (just found this out thru an eval with FL School for 
Deaf & Blind). When I have mentioned Braille to our ESE dept, they have 
said she has "too much sight, will not like it and it will be too slow 
for her." With her cataracts, glaucoma and retinal detachment are 2 
things we need to watch out for. We also have no medical history on 
birth mom and nothing on birth father. Trying to get this point across 
is like pulling teeth with our ESE dept. They continue to look ONLY at 
her acuity at this point - but the lighting and amount of writing on the 
page is making a difference in what she is seeing now!

Right now, Torrie's brain is a sponge and she will learn Braille very 
quickly. I am doing pre-braille things with her - and reading the twin 
vision books. We will be pushing for Braille for the 2009-10 school 
year. I haven't even mentioned IDEA to them ...

With the twin vision books, Torrie is THRILLED to read Braille. She is 
sooo excited about reading them from the Jernigan Library and she is 
disappointed when they have to go back. We have a few braille books for 
her and she reads them to me and her dolls/stuffed animals.

I can say in all the folks I have had emails from and talked to, all 
agree to start Braille at an earlier age -- which is what we are doing.

Good luck.
Doreen

Andy & Sally Thomas wrote:
> Karen,
>
> I'd also like to share what happened to my son, who has congenital 
> glaucoma. His doctors were very confident that they could do 
> everything for him.  He had an increase in eye pressure so they 
> recommended a trabeculectomy to reduce the pressure.  This is 
> generally very straight forward surgery.  In my son's case there were 
> some difficulties and he ended up completely losing the vision in that 
> eye.  It was very unexpected.  I don't say this as a scare tactic, 
> just to let you know that there are many possible hazards with 
> "tricky" eyes.  We hadn't considered nonvisual techniques for our son 
> because the doctors were so confident that he would see well.  In some 
> ways it was fortunate that this happened when he was young so that 
> braille has always been part of his academics.  I think it was easier 
> to include it early rather than starting late.
>
> Sally Thomas
> ----- Original Message ----- From: "Steve & Karen Leinart" 
> <s.leinart at comcast.net>
> To: "NFBnet Blind Kid Mailing List,(for parents of blind children)" 
> <blindkid at nfbnet.org>
> Sent: Monday, March 16, 2009 4:36 PM
> Subject: Re: [blindkid] Putting pressure on the school district
>
>
>> Bonnie brings up something that I've been pondering.  I have 2 visually
>> impaired sons.  Matthew is 6, has albinism, and near vision of 20/800.
>> It's a big DUH that he needs Braille (well, it is to me, but of course
>> the school district has been a different matter).  Anyway, it's my other
>> son I'm puzzled about.   He was born with congenital glaucoma, had
>> surgery at around 5 months of age, and received no follow up care until
>> he was 3 y.o.  He's now 4 1/2, and his pressures have been fine since we
>> adopted him, he hasn't required additional surgeries or drops.  There is
>> some permanent damage from when his pressures were high as an infant
>> (some corneal scarring, amblyopia, myopia and astigmatism).  His current
>> vision is 20/40 in his "good" eye and 20/50 in his "bad" eye.  His PO
>> says his prognosis is quite good, although with glaucoma you never know
>> for sure.  Therein lies my question.  Obviously from Bonnie's post,
>> things can change with this disease.  Do you push for Braille from the
>> beginning for a child with a degenerative condition, or wait until there
>> are signs it truly is degenerating?  I'm looking for thoughts and 
>> feedback.
>>
>> Thanks,
>> Karen, mom to 5
>>
>> Bonnie Lucas wrote:
>>> I cannot tell you enough just how important Braille is. When my
>>> daughter, who is now 18, was 4-5, she had vision that measured 20/40
>>> and sometime 50. She read regular print and by the time she was in
>>> second grade, she was reading constantly. At four, though she had had
>>> cataracts as an infant and though I have congenital glaucoma, she
>>> actually did not develop the glaucoma until about five. Being blind
>>> myself, I was thrilled that she had such good vision and it simply did
>>> not occur to me that as she used her eyes and as the glaucoma caused
>>> the pressure to go up, she would truly have difficulties with reading
>>> smaller print and reading for long periods of time. When she got into
>>> high school, she had been fitted with contacts and was so glad not to
>>> have to wear her big glasses anymore. Though I was afraid that the
>>> contacts might damage her vision, I understood why she didn't like her
>>> glasses. She was, like most teenagers, into how she looked. We had
>>> asked if she could learn Braille when she was in grade school and she
>>> worked a couple days a week at it but neither she or I realized how
>>> important that would become later. Furthermore, I'm sure I would have
>>> had a fight on my hands as she was about the top reader in her class.
>>> Fast forward to high school. By then, her vision was about 20/70. she
>>> had had several laser surgeries and controlling her pressure was
>>> becoming more and more difficult. Long story short, she finally
>>> dropped out of high school and took the GED because she was beginning
>>> to fail so many of her classes. We thought it was partly because of
>>> depression as we had moved during what was supposed to be her senior
>>> year. She tried to go to school recently at the University of Kansas
>>> but she had to drop half of her classes because she simply cannot do
>>> the reading. Voc Rehab has failed to get her the equipment she needs
>>> so we are at the point of needing to get her into one of the NFB
>>> centers as soon as we can and ppushing Voc Rehab to pay for it. Now,
>>> you wonder, how could a blind mom not see the importance of having her
>>> learn blindness skills during her life. Sad to say, I just didn't
>>> realize how much people who have vision are limited when it starts to
>>> fail. She was always my child who wanted to read everything that I
>>> needed read. She was my best worker in so many ways. However, when she
>>> really began having problems seeing, I didn't realize what the problem
>>> was and she simply checked out of life.
>>> Bottom line: Braille! Braille! Braille! And other blindness skills.
>>> O&M and more.Jump right in and don't give up. With glaucoma, the more
>>> you use your eyes, especially for strenuous tasks such as reading, the
>>> more likely the pressure is to go up. One last thing, because my
>>> daughter loved to read so much, she later told me that when she was
>>> around 8-12, she would read all the time although her head was
>>> splitting in pain. I had no idea. I just thought she was a bit lazy
>>> and into that teenage stuff of not wanting to work anymore. Head aches
>>> during junior high and high school were endless and we got no help
>>> from the doctor. Best of wishes and just be persistent!
>>> I just read your email again and realize that you did not mention
>>> glaucoma but I do believe that your daughter is at risk so I think my
>>> story is pertinent.
>>>
>>> Bonnie Lucas
>>>
>>
>> _______________________________________________
>> blindkid mailing list
>> blindkid at nfbnet.org
>> http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> To unsubscribe, change your list options or get your account info for 
>> blindkid:
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/andysally%40comcast.net 
>>
>
>
> -------------------------------------------------------------------------------- 
>
>
>
>
> No virus found in this incoming message.
> Checked by AVG - www.avg.com
> Version: 8.0.237 / Virus Database: 270.11.15/2004 - Release Date: 
> 03/16/09 07:04:00
>
>
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for 
> blindkid:
> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/doreenproverbs3%40bellsouth.net
> ------------------------------------------------------------------------
>
>
> No virus found in this incoming message.
> Checked by AVG - www.avg.com 
> Version: 8.0.237 / Virus Database: 270.11.16/2006 - Release Date: 03/17/09 07:23:00
>
>   