[blindkid] Notes on Eye Poking

Thu May 3 17:07:01 UTC 2012

PS.  Serena has ROP.

At 05:49 PM 5/1/2012, you wrote:
>That's what I'm waiting for, where he catches himself and he is old enough
>to self correct.
>
>Both of mine have LCA and my daughter never poked, but she does have a bit
>more vision.
>
>Traci
>On May 1, 2012 3:56 PM, "David Andrews" <dandrews at visi.com> wrote:
>
> > Arielle:
> >
> > I agree with much of what you say -- although I don't think eye poking is
> > specific to one eye condition or another.  I have ROP and can poke with the
> > best of them.  I think the unifying theme is probably that the condition
> > starts at birth or early on.
> >
> > I mostly stopped, but at times of stress or deep thought that finger
> > creeps up.  I think we do it because it makes one feel like he/she sees
> > colors -- some kind of stimulation.
> >
> > My parents tried things that would be thought of as mean today, probably,
> > different times, they wrapped my fingers with adhesive tape, they painted
> > them with idine etc.  They mostly got me to the point of being conscious
> > enough of it that I would stop.
> >
> > Dave
> >
> > At 09:45 PM 4/30/2012, you wrote:
> >
> >> Hi all,
> >> To address the questions about eye poking: Over the years I have
> >> conversed with several parents dealing with eye poking as well as
> >> several blind teens and adults who are recovering pokers themselves
> >> (in different stages of recovery). Unfortunately despite all this
> >> discussion and sharing of ideas I don't know of any easy solutions. I
> >> do, however, believe that eye poking is quite a different animal from
> >> rocking, spinning and other such "blindisms" even though it often gets
> >> lumped in with the others. Rocking, etc. often serves as a form of
> >> expression as it appears when one is excited or aroused in some way,
> >> but eye poking tends to be a more constant habit and is done when one
> >> is bored or even while sleeping. It also appears to be much more
> >> common with certain eye conditions and in fact, a majority of eye
> >> pokers i've met or talked with have LCA (aka Lebers) although I admit
> >> my sample is biased and it may very well be part of other eye
> >> conditions too. Based on my nonscientific observation, it seems like
> >> eye poking has a much more primitive basis and that it satisfies some
> >> neurological need within the eyes or between the eyes and brain. It
> >> also appears very early in infancy, before movement patterns are
> >> developed and certainly before a baby is capable of much learned
> >> behavior. Because of its primitive nature, the habit is extremely hard
> >> to completely and permanently get rid of, which is why there are so
> >> many "recovering" pokers out there (including myself).
> >> It is definitely possible for children to learn to reduce the
> >> frequency of poking or to stop it in certain kinds of situations, such
> >> as in public. This happens through old-fashioned parenting, reminding,
> >> rewarding good behavior, etc. just as kids can learn to sit still and
> >> to say please and thank you. However, as with rocking, rewards and
> >> reminders don't address the underlying need that's driving the
> >> behavior. Unfortunately we haven't really figured out what that need
> >> is or how to address it. I do know of one young man who figured out
> >> that he could stop himself completely from poking by pressing on a
> >> certain spot on his brow, and I have also heard of people teaching
> >> themselves to squint or flex their eye muscles instead of poking. I
> >> suspect the real solution will be a special pair of glasses that puts
> >> pressure on the nerves that are craving stimulation. We need an
> >> inventor among us who is really motivated to tackle this problem. :)
> >> In the meantime, I do think glasses may be a wise deterrent attempt
> >> even if a child reaches under them, because they can help encourage
> >> awareness of the behavior and make it easier to consciously stop in
> >> certain situations. Even if not eliminating the poking completely,
> >> reducing the frequency will help keep eyes healthy. While I think the
> >> claims that years of poking will lead to grotesquely sunken eyes are
> >> old-wives' tales, I am pretty sure that too much can increase the risk
> >> of certain kinds of eye complications in adulthood (such as corneal
> >> shape changes) and, in my own experience, can cause plain old
> >> irritation.
> >> Finally, I think it's important to address the issue, but to do it in
> >> a positive and nonemotional way whenever possible. Sometimes parents
> >> can get really emotionally worked up about their children's eye poking
> >> and their inability to stop it. Sometimes I worry that these extreme
> >> reactions come from the fact that poking reminds them of their
> >> children's blindness and the fact that their children's eyes are
> >> "different". We should teach children that eye poking is not a good
> >> idea both because it's not good for their future eye health and
> >> because it looks weird to sighted people around them. However, we also
> >> want them to learn to accept the fact that their eyes are different
> >> and to perceive their blindness as a positive part of their identity.
> >> Although I think my parents handled my own poking well for the most
> >> part, there were a few times when I felt their reactions to my poking
> >> were really reactions to my blindness itself. As adults we understand
> >> the difference between rejecting a child's blindness and rejecting a
> >> child's blindisms, but a young child with a concrete mind won't
> >> necessarily see that distinction. It's important not to take it
> >> personally if you and your child don't find an easy or consistent
> >> resolution to the poking. I also don't think it's productive to make
> >> kids feel ashamed of something that is at least partially out of their
> >> control. I remember reading a story written by a blind woman whose
> >> mother made her write "I will not poke my eyes" five hundred times in
> >> a row and she felt like a horrible person but didn't understand what
> >> she had done or how she could avoid doing it again. We don't want kids
> >> to feel inadequate because they are unable to control a behavior they
> >> don't understand or are even aware of most of the time. Start slow,
> >> explain why the poking is bad, offer alternatives and eventually
> >> empower your child to gain more and more control. This won't happen
> >> right away and they may never gain full awareness or full control, but
> >> they can definitely develop a healthy ownership of their eyes and be
> >> motivated to make an effort to keep their fingers out of them. If you
> >> can be patient enough to wait for this to happen, then eye poking will
> >> eventually become a manageable issue without being a source of shame
> >> or contention.
> >> Best,
> >> Arielle
> >>
> >
> >
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> >
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Carol Castellano
President, Parents of Blind Children-NJ
Director of Programs
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.blindchildren.org
www.nopbc.org  