[blindkid] Putting pressure on the school district

[Steve & Karen Leinart]

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
>