[blindkid] Notes on Eye Poking

Wed May 2 00:13:54 UTC 2012

Hi all,
I was told I started poking at 3 or 4 months of age, before my
blindness was officially diagnosed at 6 months. Actually my poking was
apparently one of the things that clued my parents and doctors in to
the fact that I was significantly blind (my first ophthalmologist
thought I had only mild vision loss from congenital nystagmus).
I have never had any color vision that I remember, but I had and still
have light perception so I am familiar with the experiences of light
flashes and motion. I have never seen a light flash or anything else
from eye poking, and in fact if I did, it would probably creep me out
enough to make me quit it. :)
That said, it is definitely possible that poking stimulates the dead
part of my retina and produces local nerve impulses that never get to
my brain.
I also think pressing on my eyes feels good in the same way that
getting my face or scalp massaged does.
I also don't think it arises directly from boredom, but keeping one's
hands busy is a good deterrent because when one is actively doing
something, it's more difficult to stop and poke.
I am glad we are engaging in this thoughtful discussion of what might
cause eye poking or at least what it tends to correlate with, instead
of just dismissing it as an unacceptable action that needs to be swept
out of our minds.
Best,
Arielle

On 5/1/12, Traci Wilkerson <traci.renee27 at gmail.com> 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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