[blindkid] To Braille or Not to Braille?

Carrie Gilmer carrie.gilmer at gmail.com
Tue Mar 17 01:19:36 UTC 2009


Hi Karen,

Hope the school year is going well for Matthew and things have been
implemented as intended. You were an awesome advocate. 

 

Your point, "although with glaucoma you never know for sure". I have know
quite a few who degenerated with glaucoma and it varied from high school to
their mid-forties to the point several had such intense pain and inability
to finally anymore relive pressure that they opted to have their eyes
removed. I do not know the statistics or can not at all say I am even
knowledgeable about glaucoma, I am not. I do not know how many make it all
their life with out severe vision deterioration. 

 

Even researching and deciding on the level of risk though, there is another
dilemma in that you do not know your own child's prognosis within the risk
factors. Is he the 4% (picking a random minority) who do just fine or in the
rest, and where along the way will it happen? No amount of research can tell
you that. And I can relate to that one more personally in that my son has a
slow progressive but has as wide a possibility as tomorrow lose it all or
not for a decade maybe even rarely more. He has cone rod (retina disorder)
dystrophy and I have met those who have it with that range of experience. I
have only met one adult past forty who had real functional vision left. His
has been very slow but if the progress remains exact like a curve on a graph
as it has then 3-5 years, but most I know it came fairly sudden when it
came. So where is he on the time line? Which statistic is he? You could make
yourself crazy trying to guess, and what good would it do you? It is
impossible to predict accurately.

 

We made the decision to prepare in case it was tomorrow and live our lives
not based on vision or fear and to be ready so if it was tomorrow or this
weekend he only lost a pleasure and convenience in comparison but not his
lifestyle and momentum but not thinking even of it regularly in any way and
of course he enjoys what he has while he has it. His vision has though been
well within the "legal limits" and he already at four and five needed non
visual or visual enhancement for most daily tasks. Except with reading 18
point bold text double spaced kindergarten he had zero problem indicated at
all, except his viewing distance was within six inches. In first grade the
font went down a bit, some lines were single spaced, the others kids sped
ahead in fluency. He never complained of fatigue but he was slow in
comparison because it took him time to just see it. But the teachers were
not alarmed in any way whatsoever. He liked the print books with their
pictures too which he could see just fine if they came up to his face
without any magnification at all. The wall for reading began to hit harder
in second grade, but it was not like he was totally failing at all, and
there was no home work hardly at all. He just mostly didn't like to read
very much. He NEVER chose it as a thing to do. That should have been a giant
red flag to the school to integrate Braille into the classroom(he was
getting  instruction after school 30 or 40 minutes 4x a week for that
inevitable day long long in to the future they thought), but all they would
give us was spelling lists 15 minutes a week. That is when we met the NFB.

 

So his Braille was not as good as his print which was also WAY behind
"normal" for his intelligence. But because print was faster (because he did
not get to have enough practice with Braille), he preferred it, right up
until we won full immersion total everything in Braille (even notices home
about strep throat) for him at the very end of fifth grade. Then his Braille
in two months suddenly became nearly twice as fast as his print. But that
was still way behind "normal" fluency reading rates for sighted kids even in
early elementary. I heard from them that NO ONE cares about fluency as LONG
AS comprehension is high-so many times for so many years at so many meetings
I can't tell you. And his comprehension scores were always above the 80th or
sometimes 90th percentile (but taking 3 times as long). And right up to
today he has stayed at between 20-35 wpm in print-depending on font and
spacing since first grade. And after another long story and great sweat and
effort he is now just recently breaking the 100 wpm barrier (for him) in
Braille. He never had the chance, he never knew what fluency really even
began to feel like for himself until he was in nearly ninth grade and passed
the 70 wpm barrier at grade level regularly. In my mind he did not even
start truly reading until somewhere between sixth and eighth grade. As it
turns out when his fluency is up his comprehension is in the 95th and above
percentiles. (You think you have guilt issues??? Anyone, smile)

 

Our preparation was to be ready for all loss. What he needed as it turned
out was more non-visual right away at four then I realized. And the teachers
we had always made it seems like he wasn't blind at all really, he had so
MUCH vision. In your case your son's acuity now is far better than mine's
ever was, so it is not so easy to tell that he might need it now too, not in
just some distant future. The fatigue alone can be a huge factor after the
primary elementary years. I mean a huge factor. 

 

 

SO you look at the pros and cons, is what we did.

 

Pros for Braille: Those who become proficient at it early  and "drop it" for
various reasons in middle or high school, have it much easier in our
experience if they need to later pick it up again. Those who even have some
fairly good knowledge but not proficiency also have it easier if they try
and pick it up later. Those who have early proficiency have it as a true
choice and are flexible to use as eye fatigue and operate often as we think
or more in a dual capacity, and can truly switch back and forth as it works
best individually because they have equal ability to use both tools. They
can decide from workability FOR THEM verses from any sighted bias on their
or another's part. 

Bonnie related well the often common story we know of those who need to
learn Braille in high school, college or later whether from glaucoma or
something else. In your case, his brother is a user, and hopefully the whole
family will come to know it at least enough to know better. He will be able
to communicate with his brother through writing. I do not know the data on
the use of eyes in elevating the risk of earlier vision loss or increased
pressure Bonnie mentions. If this is true then it makes a lot of sense and
perhaps if he was going to lose much vision the ability to rest his eyes
from reading might prolong the time he has usable vision. Again with
statistics though, you never know until AFTER it happens which statistic you
actually are.

 

Cons: He spends those hours learning something he never ends up using. This
is the prime and only con I know of that is really argued. And while I have
met a very few rare individuals who did learn Braille early and then did not
need it (actually only one true person of the literally thousands of blind
people I have met either in person or through case studies) they did not
regret learning it and it did them no actual harm.

 

 

 

 

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 Steve & Karen Leinart
Sent: Monday, March 16, 2009 4:37 PM
To: NFBnet Blind Kid Mailing List,(for parents of blind children)
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

 




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