[blindkid] Putting pressure on the school district

Tue Mar 17 03:00:21 UTC 2009

I would wholeheartedly agree with Carrie's post.  If he learns Braille now 
and ends up not needing maybe he'll be grateful he learned it and become a 
Braille teacher.  Maybe he could help his brother Braille some things when 
they're older.
Glaucoma as a degenerative disease is grounds enough for learning Braille.
Don't settle for "we'll teach it if and when he needs it".  He needs it just 
in case.
Barbara

If wisdom's ways you wisely seek, five things observe with care:  of whom 
you speak, to whom you speak, and how and when and where.

--------------------------------------------------
From: "Steve & Karen Leinart" <s.leinart at comcast.net>
Sent: Monday, March 16, 2009 4:36 PM
To: "NFBnet Blind Kid Mailing List,(for parents of blind children)" 
<blindkid at nfbnet.org>
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
>>
>
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