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

Thu May 19 22:07:00 UTC 2011

This story also reminded me of a conversation I had with my daughter several months ago. We had just visited her retina specialist for her yearly check up. I had asked the doctor if any of the other children (now adults) were showing an increased rate of retinal detachments as they aged. My daughter asked me after we left if I was afraid of her losing her remaining vision. I did swallow hard and admitted that while I was scared, I would more than likely react to however she handled the situation. Her reply to me was that she was not afraid of losing her remaining vision because her training at LCB taught her how to live her life if that should occur. I am so thankful to all our Federation family. To everyone who has had a hand in my daughter's training - I will be forever grateful for what you have given me. You have given me peace of mind.....Thank you all!
Dr. V - Thank you for sharing your story. Please give my best to your family and I look forward to seeing you at convention.
Regards,
Kim Cunningham

--- On Thu, 5/19/11, Carol Castellano <carol.joyce.castellano at gmail.com> wrote:

From: Carol Castellano <carol.joyce.castellano at gmail.com>
Subject: Re: [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: Thursday, May 19, 2011, 10:48 AM

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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