[blindkid] Here Today, Gone Tomorrow; The Day the Lights Went Out

Fri May 13 18:42:43 UTC 2011

Eric,
Please send this to Future Reflections so it can be published - others need to read this!  As a teacher, I fight many times to be able to give my students Braille instructions.  Often times, I'm fighting with administrators.  This article would help them understand.  Often times, even parents are struggling with their own feelings about their child learning Braille.  This article would help them understand, too.  Great article!
Merry-Noel

--- On Fri, 5/13/11, Eric Vasiliauskas <icdx at earthlink.net> wrote:

From: Eric Vasiliauskas <icdx at earthlink.net>
Subject: [blindkid] Here Today, Gone Tomorrow; The Day the Lights Went Out
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" <blindkid at nfbnet.org>
Date: Friday, May 13, 2011, 3:15 PM

Hi All,
The subject of how hard to push for braille, technology, & other blindness
skills comes up from time to time from various angles on both parent &
educator listservs, especially for those kids with functional residual
vision. 
I think that all too often the focus tends to be on current level of
functioning & that professionals & parents forget, or don¹t want to think
about, the reality that for many childhood conditions, vision is not stable
over time. Some loose vision as part of the underlying eye condition, others
due to retinal detachments, uncontrollable glaucoma, cancer and other
reasons. The loss may be gradual or sudden.
Like many on this listserv, I have met too many individuals who eventually
lost their functional vision in their pre-teen or teenage years or early
adulthood who then found themselves faced with the harsh reality that they
did not have the braille, mobility, &/or technology skills to competitively
perform at the grade/age level they should have been able to.
They then have to struggle to learn all the blindness skills in the midst of
the ongoing pressures of middle school, high school or perhaps as they start
college. Many such kids & families understandably go through a
shock/denial/grieving process as well.
It is along that line that I am sharing the following.
It¹s been a bit of a rough year. Following a number of procedures, both
in-state & out-of-state, and months of uncertainty, our 14 year old¹s
remaining retina detached completely a few months ago. It was not a simple
detachment, but more complicated than that - the bottom line is that despite
having seen some of the best retinal surgeons in the country & it was
confirmed that there is nothing more to be done.
We always knew that there was a possibility of total vision loss, likely
from worsening glaucoma or retinal detachment, never-the-less the reality of
it actually happening was a bit of a shock  it was no longer a theoretical
possibility.
Just like some of his friends & acquaintances around the country, what
vision he & they once had, is now gone.
My wife & I had a discussion with our son the evening that it became clear
that what visual perception that he had was permanently gone.
Imagine our surprise when he said that he felt that he was actually luckyŠ
He went on to elaborated that he felt that way because he did not experience
the pain that some of his friends & acquaintances had gone through prior to
loosing their vision.
He said he knew he would be fine.
He has the braille skills.
He has the BrailleNote skills & is refining his computer skills.
He is academically a strong student.
After our talk that particular evening, he finished his homework.
Once his assignments were printed out, he picked up his slate & stylus &
brailled an identifying label of the front page of each assignment before
filing them away in his backpack - just like any other night.
The following morning when I dropped him off outside of school (a little
later than expected because of unexpected traffic), he didn¹t get flustered,
but rather stepped around the car & headed off confidently to class on the
other side of the campus.
A few months have passed  we are preparing to transition from middle school
to high school. 
He did not & doesn¹t feel lost, anxious, or depressed about the future.
I¹m so glad we were proactive.
I¹m so glad we pushed the braille & technology skills when so many ³experts²
said that he was too young for this.
I'm so glad we pursued the extra O&M training.
I¹m so glad we listened to those in the NFB who encouraged us to send our
son thousands of miles away for 3-4 weeks each of the last few summers to
spend time with other blind kids & the blind counselors of middle school
Buddy Programs in Louisiana & Minnesota where he learned he could perform
activities of daily living, travel, & just have fun all under sleep shades -
a setting in which the kids could not use the excuse of ³I can't do it
because I¹m blind² for the friend or the counselor they would turn to was
blind as well.
I can honestly say that from a functional standpoint, there is no noticeable
difference in his performance now compared to last year.
In fact his head positioning, body posture, and sense of truly accepting
personal responsibility for the rest of his life have actually improved.
Rather than feeling distraught or sad, I must admit that I too feel so very
lucky - for he has mastered his blindness skills to the level that ³the day
the lights went out² was in most ways not all that different than other
days.
The friendships, experiences, insights & support that he & we have received
through the NFB have been such a blessing.
Eric V

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