[blindkid] Psychological Attention

Sat May 17 13:31:10 UTC 2014

Gerado,

Welcome to the list. Given your personal and professional interests in
blind children and hepling parents support their blind children on thheir
of living the lives they want, I believe that you are quite appropriate as
a member of this listserv.

First, some background might be helpful: My daughter, Ana Catherine, is now
13, and we received the diagnosis when she was 26 months old.
Interestingly, the ophthalmologist couched the information in such an odd,
clinical way that I did not understand the full import of the diagnosis
(she has some residual functional vision). [In fact, l] Additionally, Anna
Catherine had other medical issues, including bilateral hip malformation
and tube feeding from earlier medical difficulties. Honestly, at 26 months
with a toddler who had only been walking for about 4-5 months and who did
not eat by mouth, I did not even notice a vision problem. This was a follow
up visit from an infant eye exam we did because amblyopia (lazy eye) runs
in my family.

Now, to your questions (my actual answers are preceded by an asterisk, *,
and a more lengthy explanation follows):
Psychology attention for when you got your child's diagnosis of blindness:
Such as individual therapy or group therapy? Did you have either of these?
* No, I did not have any professional psychological services upon, or
after, learning of my daughter's blindness. I got information and support
from the National Federation of the Blind (NFB), including dedicated and
generous competent blind adults (like you, Gerado), who provided their
experiences and their wisdom about growing up and succeeding in life.
Additionally, support and guidance from other parents of blind children in
the National Organization of Parents of Blind Children (NOPBC), a division
of the NFB, gave me the knowledge and confidence I needed to help Anna
Catherine gain the skills she needs to become a successful, independent
young lady.

Would it have been useful to have some sort of Psychological attention be
it during the initial shock stages, or as time passed?
* I can honestly say, No.
Anna Catherine's diagnosis did not really "hit us that hard." Other factors
involved -- (1) the fact that we had dealt with far more frightening
concerns (Anna Catherine knocked on death's door more than a few times in
infancy), (2) we were still heavily involved in trying to get her off of
tube feeding and eating by mouth, (3) the first ophthalmologist's odd
behavior upon providing the diagnosis, and (4) the lack of obvious impact
upon Anna Catherine's daily life -- lessened any "psychological blow" we
felt at the time of diagnosis. When we did for looking for more information
about her blindness, we did get caught up with the "medical model" a bit
(searching for "cures"), but no hopes for a cure (such as multiple
surgeries, etc.) were forthcoming, so we never rode that particular
emotional roller coaster -- we had to accept Anna Catherine's vision that
way it was. Fortunately, by the time school issues cropped up, we had begun
our relationship with the National Federation of the Blind, and the
knowledge of the benefits of high expectations kept us moving forward
without psychological pain or distress related to Anna Catherine's
blindness (though there has been a great deal of stress related to dealing
with others, especially in the educational realm, who do not share our same
high expectations).

With regard to the utility of psychological attention, I believe that
psychological attention from individuals who are ill-informed about the
true potential of blind individuals can have monstrously deleterious
impacts upon the ability of a parent to accept the blindness diagnosis and
move past the diagnosis and onto the child. So often, individuals in the
medical and educational fields focus on a diagnosis. While a diagnosis can
be helpful, it is only the first, small step on the pathway of life.
Support and guidance from organizations like the NFB and the NOPBC can help
parents focus on the capabilities of their children, not the disabilities.

In contrast, psychological attention from individuals with knowledge of the
true potential of the blind can be a blessing and help parents move more
quickly toward gathering the resources they need to help their blind
children lead the life they want. Perhaps someone (like you, Gerado), can
make an impact in the psychological field in helping sighted professionals
learn that it IS respectable to be blind. Then, those better-informed
professionals can make a positive impact upon the lives of parents who need
their help.

Thank you,

Carlton

-- 
Carlton Anne Cook Walker
Attorney at Law
President, National Organization of Parents of Blind Children
Teacher of Students with Blindness/Visual Impairment
105 Creamery Road
Boiling Springs, PA   17007
Voice: 717-658-9894
Twitter: braillemom

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