[blindkid] To Braille or Not to Braille?

[Steve & Karen Leinart]

Carrie,

Thank you so much for your thoughtful reply.  I somehow knew what you 
would say, but the reasoning and history behind it is very helpful. 

Matthew's doing great... can now braille the alphabet and tactually read 
over half of it.  His TVI seems quite amazed that he is learning both 
print and braille at the same time and not even getting confused.  OK, 
I'll try not to smirk.  Of course the job of advocate will go on 
forever, and I'm duty-bound to be ever-vigilant... the IEP meeting for 
1st grade isn't too far off.

Karen

Carrie Gilmer wrote:
> 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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