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

[Carol Castellano]

Eric,

Your family's story really moved me.  Thank you so much for sharing it.  A

ll good wishes to all of you.

Carol

Carol Castellano
Director of Programs
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nopbc.org

At 11:15 AM 5/13/2011, you wrote:
>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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