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Re: How did you know your child was faceblind?

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  • gotinsulin
    Hi, My son Tim, told us... precisely last fall at 8yo. He had been tellling us in many ways for years... He has AS, SID, and antibody pos for Type 1 diabetes.
    Message 1 of 19 , May 2, 2003
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      Hi,
      My son Tim, told us... precisely last fall at 8yo.
      He had been tellling us in many ways for years...
      He has AS, SID, and antibody pos for Type 1 diabetes.
      He made no/limited eye contact until he was directly
      approached...
      He was anxious when more than 3 people were together.
      He holds hands to maintain security, a great amount of the time.
      He began saying "I don't talk to strangers!" when asked why he
      didn't acknowledge someone that obviously knew him from his class
      neighborhood.
      He would remark that he did not like it if a parent or grandparent
      changed their hairstyle or shaved a beard or mustache.
      His Sensory issues always made haircuts horrible... his scalp and
      his hearing made the act of cutting hair torture...
      I have always cut his hair... One day after a rather dramatic haircut
      He looked into the mirror and said "that's not me I have bigger hair"
      There was NO RECOGNITION in his eyes...
      We played the Game Guess Who and Read the book "My three uncles"
      and afterwards discussed how people commonly recognize each other ..
      Tim said he knew who Dad was by his flannel shirts and his mustache.
      He looked at me(momma) and leaned forward and looked around me to my
      waist length hair... Why I know you by your hair he said...
      When he said that in my mind I remembered the many times I was at
      school and he would walk right past me with out seeing me until I
      spoke, my hair being under a hat or hood...
      He greets those he has intimate relationships with... with awe and
      relief... Brightness, wide eyed and thrilled to see you... even when
      its been less than an hour that you have been gone.
      When he is in doubt... he also relys on smell and voice recognition
      to confirm who you are... One day my mother went to school to pick
      him up and he was expecting her yet he did not recognize her and he
      was very upset that she didn't have her glasses on and she was in a
      rain coat he had never seen .... Until they talked for several
      minutes ... she was a stranger to him....
      Thinking this through its so sad...
      I will say that knowing that it is an issue has greatly improved
      Tim's life.
      We prepare him for changes and prep him discretely and we let people
      know that "we are not snobs so please say hello and say who you are
      and relate how we know you: like his Karate Teacher recently...as
      outside the dojo and out of his uniform ... he would be a complete
      stranger to Tim...
      Hope this helps let me know
      Sandra McCarthy
    • gotinsulin
      Hi again, In second grade, in a student body of 400+ students the only child Tim EVER called out a greeting to was one student, that boy had a genuine mohawk
      Message 2 of 19 , May 2, 2003
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        Hi again,
        In second grade, in a student body of 400+ students the only child
        Tim EVER called out a greeting to was one student, that boy had a
        genuine mohawk hair cut about 5 inches long... He was not a child
        in Tim's class they met in O.T.
        The next year third grade ...that boy grew his hair back and Tim
        has Never recognized him again...
        He showed such joy in recognizing this other child....
        Its a huge issue, we nonfaceblind take it for granted its initially
        hard to appreciate...
        Thanks Again
        Sandra McCarthy

        PS
        Location has a lot to do with recognition and Tim would be at ease in
        the classroom after a few hours but go at the door to an assembly or
        lunch and now he was in a sea of strangers....

        Seasons to brought whole new wardrobes... to learn...
        its amazing how they do compensate....
      • Martina Grüter
        Hi Sandra, all you are telling is very typically for PA. I have a daughter with congenital PA and she is 5 years old - we know about three years now, and all
        Message 3 of 19 , May 3, 2003
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          Hi Sandra,

          all you are telling is very typically for PA. I have a daughter with
          congenital PA and she is 5 years old - we know about three years now,
          and all your stories could happen to her as well, or happened already.
          If I change my jacket, when I go a get her from the kindergarten, she
          takes more time to recognize me.

          FOr my daughter it is not as hard, because she knows, that her father
          and grandfather has the same problems, and PA is a point in several
          disussions in our family.

          THe researchers has no idea, how the AS and the PA is correlated.

          Do somebody else in the family has this problems,too.your husband, or
          both sides of the Grandparents?

          Bye the way what is the meaning of SID ??

          Here in the list are several mothers with PA-Children. Wellcome in the
          list:) - it helps a lot!

          Martina , Germany
        • Bill Choisser
          ... When I read that, there were tears in mine, because I was that little boy once. Why, for God s sake, if it TORTURES him, do you keep cutting his hair!
          Message 4 of 19 , May 3, 2003
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            >He would remark that he did not like it if a parent or grandparent
            >changed their hairstyle or shaved a beard or mustache.
            >His Sensory issues always made haircuts horrible... his scalp and
            >his hearing made the act of cutting hair torture...
            >I have always cut his hair... One day after a rather dramatic haircut
            >He looked into the mirror and said "that's not me I have bigger hair"
            >There was NO RECOGNITION in his eyes...

            When I read that, there were tears in mine, because I was that
            little boy once. Why, for God's sake, if it TORTURES him, do
            you keep cutting his hair! Boys CAN have long hair you know.
            Read on - I think you'll see the issues go far beyond "sensory
            at the moment his hair is cut".

            I ran away from home when I was 5 over having been given an
            unwanted haircut. I protested against haircuts every time
            they were demanded. When I got to be big enough, at age eleven,
            to refuse them, my mother hired two stranger men to drag me off
            to a barbershop where they held me down and cut off all my hair.
            When I was 14 and my beard came out, I refused to start shaving.
            My mother refused to give me any food until I did. On my 17th
            birthday I was told I had to have my hair cut off on the way
            home from school or I would not get dinner and cake. Can't you
            see that hair means far more to this child than it does to other
            people? It doesn't to every face blind child, but it clearly
            does to this boy. By age 8, what we use to identify people
            with is very much set.

            Having been that little boy for 56 years now, I can tell you
            hair is the only thing he sees with any feeling on his head.
            To cut off his hair, you might as well be cutting off his entire
            head. To recognize a person by their hair, the more they have,
            the more recognizable and more attractive they are. How do you
            think he FEELS when you have a full head of hair and other
            people have a full head of hair (these being mainly the only
            people he recognizes and thus knows) and you keep chopping HIS
            HAIR off?

            >In second grade, in a student body of 400+ students the only child
            >Tim EVER called out a greeting to was one student, that boy had a
            >genuine mohawk hair cut about 5 inches long... He was not a child
            >in Tim's class they met in O.T.
            >The next year third grade ...that boy grew his hair back and Tim
            >has Never recognized him again...

            I had the same thing happen with a neighbor a few years ago.
            We often talked on the sidewalk here on the block, and I even
            saw him sometimes around town. He had a two foot long red
            ponytail. Then one day I realized months had gone by without
            my seeing him. I just presumed he moved away. I was surprised
            he had never said anything about moving. Then about two years
            later I was talking to another neighbor and this guy with short
            hair walked by and said hello to him but not to me. After he
            left, I asked who that was. The neighbor said the name of the
            guy with the long ponytail. :-( I learned he had never moved
            away at all. When he cut off his hair, to me he vanished from
            the face of the earth.

            This thing about only recognizing longhaired guys is not going
            to change. I am 56 years old now, and it hasn't changed yet.
            Almost all my friends are longhaired men, and they always will
            be. Your son can grow up to belong and fit in with longhaired
            men, or he can grow up to not belong and fit in with anybody.
            The earlier you realize this, and let him grow his hair to his
            own specifications, the more normal his maturation will be.
            When you can't recognize yourself, you can't even form a solid
            sense of self. You can't fight for yourself because there's
            nothing to fight for. You can't grow a sound personality until
            there is.

            >He showed such joy in recognizing this other child....
            >Its a huge issue, we nonfaceblind take it for granted its initially
            >hard to appreciate...

            Yeah, and on your own body it is the biggest issue you can imagine.
            Hair grows to a certain length and then it stops. His hair is not
            going to grow down to the floor and then run out the door. My hair
            has now grown to that length where it stops and there are no chop
            marks on it at all. Only when it got to that point did I ever feel
            attractive. The impact on my self-esteem upon being attractive for
            the first time in my life was immense. I would never again cut on
            my hair.

            My biggest regret is that I never got to see what I looked like
            when I was young. I've never seen myself except as an old man:
            http://www.choisser.com/for/webboard/bill.jpg

            Bill
          • gotinsulin
            ... the ... Thanks Martina, SID is Sensory Integration Dysfunction: Tim s is severe hypersensitivity of All senses Light, Sound, Taste, Tactile, Smell, and
            Message 5 of 19 , May 3, 2003
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              --- In faceblind@yahoogroups.com, "Martina Grüter" <mgrueter@c...>
              wrote:
              > Bye the way what is the meaning of SID ??
              >
              > Here in the list are several mothers with PA-Children. Wellcome in
              the
              > list:) - it helps a lot!
              >
              > Martina , Germany

              Thanks Martina,
              SID is Sensory Integration Dysfunction:
              Tim's is severe hypersensitivity of All senses
              Light, Sound, Taste, Tactile, Smell, and Balance are effected.
              His response to what may be tolerable for most varies but is
              not limited to anxiety, muscle spasms, verbal sounds...
              His characteristics sometimes resemble Tourette's Syndrome and/or
              Parkinson's when in overload..
              That said he is not medicated... Takes DMG(an antioxidant)
              classified as a food supplement which has helped
              to support his nervous system since Nov and we also now
              Homeschool. He now takes Karate(privately) which has shown to
              be quite beneficial in his body awareness, strenthening, esteem,
              and speaks to the type of person he is dedicated, hard working,
              honorable, and determined to be self reliant...
              He is a wonderful human being and he shows me everyday what life is
              all about... I thank God that I have been given the privilage and
              honor to help him succeed in his life...
              Sandra
            • gotinsulin
              ... , ... Yes I agree Bill for you that option makes sense, for Tim the added issues are that the SID creates these issues intolerable: bedhead, tangles, hair
              Message 6 of 19 , May 3, 2003
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                --- In faceblind@yahoogroups.com, Bill Choisser <bill@c...> wrote:
                ,
                > people he recognizes and thus knows) and you keep chopping HIS
                > HAIR off?
                >
                Yes I agree Bill for you that option makes sense, for Tim the added
                issues are that the SID creates these issues intolerable:
                bedhead, tangles, hair touch eyebrows, ears or base of neck,
                wind blowing through his hair,
                Tim wears a cap/ hat 80% of the time when outside...and has since
                infantcy... if his hair is to thich he doesn't tolerate how his hat
                fits or the warmth it creates...
                His tactile response makes the process difficult but Tim does
                tolerate and wants the hair out of his eyes, off ears etc.
                I would have no problem if he grew it to the floor I am about his
                ultimate best mode of function...
                We try to keep up by doing trims very frequently ...and than the
                changes are minor...
                Occasionally lif's other issues that come our way may let us fall
                back and his healthy hair grows like a weed...
                Suddenly we are faced with the need for a more dramatic haircut...
                That's when the conversation took place that as you have conveyed
                wonderfully that I knew Tim's faceblindness applied to himself and I
                had not considered that before. A little piece of my heart was wounded
                when I saw the truth and ultimately from you and Tim's experience it
                has made me much, much more dedicated to making the use of timely
                trims ... a priority....
                I can't thank you enough for keeping this site going as you are a
                window into my son's perceptions...with faceblindedness...
                Yet, he has other issues that makes him uniquely complicated...
                Which means I need to utilize all the help I can get...
                Sandra
                Mom to Tim -AS,SID, faceblind,Skeletal problems(minor) Scleosis
                (newly), antibody pos for Type 1 Diabetes, and I believe also suffers
                from sleep apnea but that is a story for another time. (we position
                and bed check Q2hrs throughout the night to keep him safe)
                and mom to Colleen Type 1 Diabetes Insulin Dependent since age 3
                now 7 takes 4 injections/day, soon to be pumping by summer I hope.
                Just dx'd with Thyroid condition... which 10% of Type 1 kids get
                so not shocking but still... Who also at 7 has to learn what's unique
                about her brother and why he may not be, do , talk, tolerate, what
                other 9 yo big brothers might...yet is highly intelligent...
                Only Empathy appreciated... just wanted you to see the dynamics of
                our unique little family...(smile) so needed to give you the facts...

                ps My husband does exhibit some qualities of the AS persona and so
                did my father ...

                Sincerely Sandra
              • gotinsulin
                I also neglected to mention that the Sensory system also causes Tim to do some self stimulating things as a way its the body reorganising.... rocking, pacing,
                Message 7 of 19 , May 3, 2003
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                  I also neglected to mention that the Sensory system also causes
                  Tim to do some self stimulating things as a way its the body
                  reorganising.... rocking, pacing, grimacing...
                  One thing he also does is
                  Hair twirling....
                  over the years we have had some horrific times with hair knots,
                  fingers actually tied up close to the scalp ... so that is
                  another reason for keeping it at a certain length..
                  We actually leave it long enough for him to twirl... but
                  safely. I would never give him a "wiffle" or shave his head
                  like some parents do... yuck...
                  His hair is great, sorta a bowl cut front than a tappered like a
                  d/a in the back...
                  Attempting to do the best we can ... what else are you gonna
                  do for the people that give you the reason for life itself...
                  Later Sandra, mom to Tim and Colleen
                • Bill Choisser
                  It sounds like you and he have weighed all the issues and that is good. The really important thing is that he is involved in the weighing process and the
                  Message 8 of 19 , May 3, 2003
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                    It sounds like you and he have weighed all the issues and
                    that is good. The really important thing is that he is
                    involved in the weighing process and the ultimate decision,
                    and that his wishes be respected. It sounds like that is
                    the case. Good for you!

                    As he grows older his wishes might change. He will mature,
                    and some problems may grow and others lessen. He will be
                    cognizant of what others look like and he will select styles
                    that he sees that appeal to his needs. Be prepared for the
                    time his wishes might change because of that.

                    Don't overlook hair ties, bandannas, and the other things
                    people with longer hair use to control it and keep from getting
                    hot. A bandanna will keep hair out of your eyes. A hair tie
                    will keep you cool in summer. Hats don't work well for really
                    long hair because there's no friction from stubble and the wind
                    keeps blowing them off. Wearing shirts without collars gets
                    rid of the worst of the problems around your neck.

                    Some kids with "can't see my friggin' head" syndrome find
                    that wearing a certain hat, bandanna, or hooded sweatshirt
                    all the time really reduces the stress from that. This
                    works for some but not others. No harm in trying it.

                    Remember that whatever does work for him, be it hair length
                    or certain clothing, is protected by legislation that
                    requires that needs of the disabled be accommodated. These
                    acts prevail over "dress codes".

                    Wishing you both the best,

                    Bill
                  • Michelle Wilson
                    Sandra wrote: One day my mother went to school to pick him up and he was expecting her yet he did not recognize her and he was very upset that she didn t have
                    Message 9 of 19 , May 3, 2003
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                      Sandra wrote:
                      One day my mother went to school to pick
                      him up and he was expecting her yet he did not recognize her and he
                      was very upset that she didn't have her glasses on and she was in a
                      rain coat he had never seen .... Until they talked for several
                      minutes ... she was a stranger to him....
                      Thinking this through its so sad...
                      I will say that knowing that it is an issue has greatly improved
                      Tim's life.

                      Michelle wrote:
                      Sandra,

                      Just wanted to welcome you to the list.

                      Our 5 year old daughter, Sniglet (we choose to use a code name), also has PA. All of the scenarios you describe about your son are familiar to us as well. Sniglet recognizes others by their clothes and shoes but not hair color or eye color. Recently it has dawned on us that she also recognizes people by the car they drive. This is quite clever when one thinks about it because how often do people change the car they drive?- they change clothes much more frequently. Sniglet watches the person get out of the car in the AM and then knows who they are the rest of the day because she's matched their clothes with their car and thus with the person. At least now I understand why she always introduces herself as "driving" a big, red, Dodge van and the asks the other adult or child what they drive.

                      Some adults get uncomfortable when Sniglet asks them the make, model and color of their vehicle. Maybe they think she's the secret police in disguise! :) We are slowly explaining to her that she needn't introduce herself as her vehicle because others know her without her vehicle and that some are uncomfortable describing their vehicle in detail to her. We are doing this gently so this information will dawn on her slowly. We don't want to take away her primary means of recognizing others, we just need to temper how she expresses this need, so that she'll fit as well as possible into general society.

                      There's a wonderful researcher by the name of Dr. Mary Morse who is studying PA children. In the last 5 years, she's discovered and evaluated 40 such children. Mary is a special education teacher with a certification as a teacher of the visually impaired. Anyone on this list can contact her just to chat or to enroll your child in her research study. Enrollment is very simple and entails describing your child and sending her a video tape. Dr. Morse is also often brought in by school districts to give educational advice on PA children. Her email address is mary@... Mary's been an invaluable resource to us. She was, in fact, the first person who asked us questions about Sniglet and possible PA. I had initially contacted her regarding Sniglet's mild cortical visual impairment. I've learned so much from her since then.

                      Take care. I think you'll find lots of support on this list!

                      Michelle

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                    • zusia@aol.com
                      In a message dated 5/2/03 7:44:57 PM Pacific Daylight Time, ... Hi Sandra! Nice to meet you. My Joey (now 7) did this too. Thanks for jarring my memory--I d
                      Message 10 of 19 , May 8, 2003
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                        In a message dated 5/2/03 7:44:57 PM Pacific Daylight Time,
                        GotInsulin@... writes:


                        > He began saying "I don't talk to strangers!" when asked why he
                        > didn't acknowledge someone that obviously knew him from his class
                        > neighborhood.

                        Hi Sandra! Nice to meet you. My Joey (now 7) did this too. Thanks for jarring
                        my memory--I'd totally forgotten. Joey is also AS, with SID & PA, and the
                        love of my life, a spot he shares with his 9yo brother. No diabetes here but
                        it's odd that you mention that because there was a time I was very concerned
                        that he was pre-diabetic. Makes you wonder what the connection is there, eh?

                        Glad to have another parent on board here. We have so much to learn from
                        these fine folks who share their stories.

                        Susan Mendenhall
                        Washington State
                        "Tempus Puget"


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                      • zusia@aol.com
                        In a message dated 5/3/03 2:48:20 AM Pacific Daylight Time, bill@choisser.com ... You ve written this before and I ve taken it to heart. My faceblind son did
                        Message 11 of 19 , May 8, 2003
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                          In a message dated 5/3/03 2:48:20 AM Pacific Daylight Time, bill@...
                          writes:


                          > I ran away from home when I was 5 over having been given an
                          > unwanted haircut. I protested against haircuts every time
                          > they were demanded.

                          You've written this before and I've taken it to heart. My faceblind son did
                          not want to get his hair cut recently and I let him pass. Twice. I even let
                          his bangs grow past his eyebrows, which I swore I wouldn't do. Didn't want to
                          mess with his "identity".

                          But Bill, I do wonder if it's just the PA that comes into play here or
                          something else. When I was 5 my mother cut off my long blonde ponytail to
                          make hair care easier. I was starting 1st grade. Pixie haircuts were in
                          style. I was devastated. I had begged her to let me keep my long hair. She
                          insisted. I can still remember standing in the bathroom as she whacked it
                          off. I've kept that ponytail all these years, tucked in a box of memorabilia.

                          That incident-- and future ones involving hair cutting-- really affected me.
                          I felt I was ugly and unfeminine (okay, I was...) without my hair. I finally
                          grew it back, permanently when I was in high school and every time I've cut
                          it since, I've felt it was a grave mistake. I'm now a frumpy 48yo woman with
                          hair below my shoulders. I call it my "Willie Nelson Syndrome."

                          But I'm not faceblind. I just was very attached to my hair. I don't know more
                          than that. My mother was a lovely, kind person who, except for picking out my
                          clothes occasionally, pretty much let me express myself any way I wanted. So
                          I can't blame her.

                          As much as I haven't wanted to challenge my faceblind son's identity, I
                          really did want him to get a haircut. I felt he was actually in danger of
                          losing his identity with that floppy Beatle-do. So today I made appointments
                          for both my scruffy boys. Joe balked, predictably. So I gave him the option
                          as we walked in. His brother was getting a haircut. He could get one, or not.
                          He didn't even hesitate. He held up his long bangs and asked if "this much"
                          could be cut off. I assured him it could. He marched right in and practically
                          raced to the chair. This, in itself, is an oddity since for 4 of his 7 years
                          a woman named Lila has cut his hair and he has never before been open to
                          anyone else touching it. Asperger kids get security from "sameness".

                          I was so proud of him. For the very first time ever he sat straight in the
                          chair with no toys in his lap, and followed each and every direction without
                          hesitation. There was one point where his eyes in the mirror got wide, but
                          that was it.

                          When he got done he walked over to where I sat in a chair with his sweater
                          folded over the arm. He discreetly placed something within the folds of his
                          sweater. I didn't even have to look. It was a clump of his hair-- he wanted
                          to take it home.

                          But when we got outside, he shook it free.

                          I think Joey just wanted to know he had the option, the control. In his case,
                          I think it's as simple as that. Of course now I have to get used to him
                          looking like a pixie. ;)

                          Susan Mendenhall
                          Washington State
                          "Tempus Puget"


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                        • Bill Choisser
                          ... Willie Nelson is a gorgeous man. I very much admire an older longhair who keeps his mane. Old men not only have old looking faces, they have old looking
                          Message 12 of 19 , May 9, 2003
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                            I had written:

                            >> I ran away from home when I was 5 over having been given an
                            >> unwanted haircut. I protested against haircuts every time
                            >> they were demanded.

                            Susan then wrote:

                            >You've written this before and I've taken it to heart. My faceblind son did
                            >not want to get his hair cut recently and I let him pass. Twice. I even let
                            >his bangs grow past his eyebrows, which I swore I wouldn't do. Didn't want to
                            >mess with his "identity".
                            >
                            >But Bill, I do wonder if it's just the PA that comes into play here or
                            >something else. When I was 5 my mother cut off my long blonde ponytail to
                            >make hair care easier. I was starting 1st grade. Pixie haircuts were in
                            >style. I was devastated. I had begged her to let me keep my long hair. She
                            >insisted. I can still remember standing in the bathroom as she whacked it
                            >off. I've kept that ponytail all these years, tucked in a box of memorabilia.
                            >
                            >That incident-- and future ones involving hair cutting-- really affected me.
                            >I felt I was ugly and unfeminine (okay, I was...) without my hair. I finally
                            >grew it back, permanently when I was in high school and every time I've cut
                            >it since, I've felt it was a grave mistake. I'm now a frumpy 48yo woman with
                            >hair below my shoulders. I call it my "Willie Nelson Syndrome."

                            Willie Nelson is a gorgeous man. I very much admire an older longhair
                            who keeps his mane. Old men not only have old looking faces, they have
                            old looking hair, and this moves way too many to cut it off. :-( Older
                            hair often acquires streaks and patterns that makes for far more
                            interesting hair than the bland sameness that many younger men have
                            in their hair.

                            >But I'm not faceblind. I just was very attached to my hair. I don't know more
                            >than that. My mother was a lovely, kind person who, except for picking out my
                            >clothes occasionally, pretty much let me express myself any way I wanted. So
                            >I can't blame her.

                            I spent a few years in an on-line longhaired men's community and I have
                            a lot of longhaired male friends. From these contacts I can say, indeed,
                            that many longhairs feel very strongly about their hair. The one thing
                            that defines all these men who do is that "they have ALWAYS wanted long
                            hair from their earliest memory". We call ourselves "born longhairs".
                            I've probably met about a hundred such men, and only about a tenth of
                            them turned out to be face blind.

                            We see long hair as part of the natural human form, and we miss it the
                            same way we'd miss an arm. (Research has shown that even people who
                            were born without an arm still miss it at a deep neurological level.)
                            We see our yearnings for our hair on the same level of intensity that
                            some people yearn to be a different sex than they are.

                            Another thing many of us share is that we had our hair taken
                            from us against our will when we were young, and in most cases we
                            eventually grow distant or cut off all relationship with the person
                            who did that to us. I remember one post where a teen was being
                            threatened by his father that he would forcefully cut off his hair.
                            One of the older longhairs, a man much older than "dad" replied,
                            "Tell him he will never see his grandchildren." This reality that
                            older longhairs know, sadly, isn't communicated to many in a
                            parenting role.

                            So, yes, I concur, this situation is not just held by face blind
                            people. Face blind people tend to latch onto real-life-stuff that
                            is available, not invent identities wholly their own. However, if
                            my personal experience that about ten percent of these men are
                            face blind holds true, considering how rare face blindness is,
                            that is a remarkable correlation. Viewing things from the other
                            direction, a substantial number of face blind men are longhairs and
                            most of those are "born longhairs". There is thus a heavy connection,
                            but it is not absolute.

                            "Long hair" is thus an identity element that many face blind men
                            acquire. I would say, from my experience with speaking with others,
                            that the binding of our identity with our hair is at the strong end
                            of the continuum for all born longhairs, and probably because,
                            lacking the face, our identity may be prefaced on little else.

                            I will elaborate now a bit on what I said two paragraphs above,
                            "face blind people tend to latch onto real-life-stuff"....

                            Like all people, we want to belong. Like all people, we want to
                            look like we fit in while still looking like an individual. These
                            two needs pull one in opposite directions just like the supply and
                            demand curves do in economics when establishing the price of
                            something. The sameness of people in our eye pulls us in a uniqueness
                            direction, or pulls us in a direction where our skills at differentiating
                            people work best.

                            In my case, long haired men are the most distinguishable people by far.
                            Thus, I want to look like a longhaired man. I see what other longhaired
                            men wear, how they behave, how they talk, and how they have their hair.
                            I find my uniqueness among this group where I can SEE uniqueness, but
                            I also achieve a look like I belong. That is possible because I can
                            READ longhairs. Strangers who see me see "a longhair" or "a hippie".
                            They don't see me as something weird.

                            In every other group I tried to fit in with, I never did. There was
                            no "me" there, and there was little uniqueness in the other people
                            that I could read. And therein lies the face blind man's dilemma
                            that no other born longhair faces - the face blind longhair HAS no
                            other choice. If long hair is the only thing he processes on people's
                            heads, running with such people and being such a person is the only
                            way he can have the opportunity to feel human, to BE human.

                            It is surely tough for a parent to see a child identifying with
                            people they don't identify with. Looking back, though, over a
                            childhood where I was not allowed to befriend longhaired boys,
                            it would have been far better for my development to have had
                            longhaired friends than no friends, which is what I got.

                            >As much as I haven't wanted to challenge my faceblind son's identity, I
                            >really did want him to get a haircut. I felt he was actually in danger of
                            >losing his identity with that floppy Beatle-do.

                            Why was that? Did he volunteer that he no longer felt like
                            himself? By "volunteer" I mean, "he brought it up, not you".

                            >So today I made appointments
                            >for both my scruffy boys. Joe balked, predictably. So I gave him the option
                            >as we walked in.

                            That's not long enough. In the longhair community, the time-tested
                            rule is you don't cut long hair off without letting two weeks pass
                            that you don't waver in your thought once. If you have second
                            thoughts, at that moment you restart the two week clock.

                            You go on to say ultimately he was happy with his hair cut, and that
                            is what counts in the end. I'm saying this because others might read
                            it (that is why we are here, after all) and this experience of longhairs
                            in general is something face blind longhairs and their parents might
                            want to know of. Long hair cannot be put back on like a hat. If you
                            lop it off and discover it is part of your identity, you can be
                            psychologically devastated for months or even years, depending on
                            how long the hair you identify with was.

                            >I think Joey just wanted to know he had the option, the control. In his case,
                            >I think it's as simple as that.

                            Control is very important. It is, after all, HIS body. This becomes
                            even more crucial when a child reaches the age of ten or eleven. It
                            is at that age that, if a boy is adamant about his hair, you'd best
                            leave him be. Younger kids accept parental suggestions more readily,
                            but at that age, forced haircuts are never forgotten and never forgiven.

                            I've been speaking of "boys" here, but quite a few face blind women
                            also have similar issues with long hair. Girls seldom face the
                            harassment that boys do about their hair, though, and they are most
                            often allowed to grow up and have their hair in peace. Because
                            never challenged, they may be no more aware of the importance of
                            their hair than most people are of something else never threatened
                            to be taken away, their face. This issue thus falls most heavily
                            on boys. I haven't read one tale similar to this one on here or
                            elsewhere that involved girls.

                            Bill
                          • Michelle Wilson
                            ... Bill, This is another Aha! for me. Now I know why Sniglet sometimes wants a specific pair of shoes or a specific shirt or wants to wear her hair up or
                            Message 13 of 19 , May 9, 2003
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                              Bill wrote:
                              > In my case, long haired men are the most distinguishable people by far.
                              > Thus, I want to look like a longhaired man. I see what other longhaired
                              > men wear, how they behave, how they talk, and how they have their hair.
                              > I find my uniqueness among this group where I can SEE uniqueness, but
                              > I also achieve a look like I belong. That is possible because I can
                              > READ longhairs. Strangers who see me see "a longhair" or "a hippie".
                              > They don't see me as something weird.
                              >
                              Bill,

                              This is another Aha! for me. Now I know why Sniglet sometimes wants a
                              specific pair of shoes or a specific shirt or wants to wear her hair up or
                              down. She always says she wants a pair of shoes like Linda, or her hair up
                              like her teacher. If her teacher has her hair down one day, Sniglet's hair
                              will also be down when I pick her up. Sniglet also tries to imitate the way
                              kids and teachers talk. I had a sense that this was an attempt to fit in,
                              much like all kids, but I also had a sense there was something more to it.
                              The basic premise is that in order to feel like one fits in, one must first
                              identify with whomever one wants to fit in with. If one can't identify
                              people by face, then it makes sense to look for other characteristics to
                              identify with, like hair style, clothes, shoes and mannerisms.

                              Thanks once again!

                              Michelle
                            • Martina Grüter
                              Hello Bill, Angelika 5 with congential PA never wanted her hair cut, too. I don´t like to go to hairdressers, too- but I hate the feeling somebody is washing
                              Message 14 of 19 , May 9, 2003
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                                Hello Bill,

                                Angelika 5 with congential PA never wanted her hair cut, too. I don´t
                                like to go to hairdressers, too- but I hate the feeling somebody is
                                washing my hair. Therefore Angelika has nice long hair - and I
                                accepted her wish at once - but I must say, I could not estimate, how I
                                would react to a boy, who don´´t wanted his hair cut.

                                I have no problems with man, who had long hair. ( when I was young a
                                lot of the boys has beatifull hair, jeans, boots, and green jackets...)
                                But the social surrounding would react, if a boy has long hair - that
                                could be a good reason for many people to invoide discussion of being
                                different. - I like to swim against the stream:=)

                                Martina Grüter, Germany
                              • Bill Choisser
                                ... Long hair is the natural state for both sexes, of course, and the brain of the face blind child quickly picks up on that. What a faceblind boy who needs
                                Message 15 of 19 , May 9, 2003
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                                  At 07:24 PM 5/9/2003 +0200, you wrote:
                                  >Hello Bill,
                                  >
                                  >Angelika 5 with congential PA never wanted her hair cut, too. I don´t
                                  >like to go to hairdressers, too- but I hate the feeling somebody is
                                  >washing my hair. Therefore Angelika has nice long hair - and I
                                  >accepted her wish at once - but I must say, I could not estimate, how I
                                  >would react to a boy, who don´´t wanted his hair cut.
                                  >
                                  >I have no problems with man, who had long hair. ( when I was young a
                                  >lot of the boys has beatifull hair, jeans, boots, and green jackets...)
                                  >But the social surrounding would react, if a boy has long hair - that
                                  >could be a good reason for many people to invoide discussion of being
                                  >different. - I like to swim against the stream:=)
                                  >
                                  >Martina Grüter, Germany

                                  Long hair is the natural state for both sexes, of course, and the
                                  brain of the face blind child quickly picks up on that. What a
                                  faceblind boy who needs long hair needs from his parents is that
                                  they help him not be mistaken for a girl.

                                  One cannot rely on facial hair like adult men do, of course, because
                                  a boy is not old enough to grow it. However, I'd say to a parent,
                                  you can work with your son to select clothing that carries a very
                                  male image. This can be far more subtle than dressing him like a
                                  Hell's Angel. :-) If you're not in tune with his generation,
                                  though, you may have to do a little research. Asking teachers
                                  should suffice. As an example, right now among college kids in
                                  California the boys wear very loose jeans and the girls wear very
                                  tight ones. Add another trait or two at this level of subtlety and
                                  his sex should not be mistaken by his peers.

                                  Longhaired men who cannot grow, or choose not to grow, facial hair
                                  have the same problem if they are slight of build, and they deal
                                  with it successfully in the same way.

                                  Bill
                                • Bill Choisser
                                  ... Michelle, the best analogy for this process I ve ever seen came from a faceblind longhaired man I met in New York. He said the masses of people in
                                  Message 16 of 19 , May 9, 2003
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                                    At 01:22 PM 5/9/2003 -0400, you wrote:
                                    >Bill wrote:
                                    >> In my case, long haired men are the most distinguishable people by far.
                                    >> Thus, I want to look like a longhaired man. I see what other longhaired
                                    >> men wear, how they behave, how they talk, and how they have their hair.
                                    >> I find my uniqueness among this group where I can SEE uniqueness, but
                                    >> I also achieve a look like I belong. That is possible because I can
                                    >> READ longhairs. Strangers who see me see "a longhair" or "a hippie".
                                    >> They don't see me as something weird.
                                    >>
                                    >Bill,
                                    >
                                    >This is another Aha! for me. Now I know why Sniglet sometimes wants a
                                    >specific pair of shoes or a specific shirt or wants to wear her hair up or
                                    >down. She always says she wants a pair of shoes like Linda, or her hair up
                                    >like her teacher. If her teacher has her hair down one day, Sniglet's hair
                                    >will also be down when I pick her up. Sniglet also tries to imitate the way
                                    >kids and teachers talk. I had a sense that this was an attempt to fit in,
                                    >much like all kids, but I also had a sense there was something more to it.
                                    >The basic premise is that in order to feel like one fits in, one must first
                                    >identify with whomever one wants to fit in with. If one can't identify
                                    >people by face, then it makes sense to look for other characteristics to
                                    >identify with, like hair style, clothes, shoes and mannerisms.
                                    >
                                    >Thanks once again!
                                    >
                                    >Michelle

                                    Michelle, the best analogy for this process I've ever seen came from
                                    a faceblind longhaired man I met in New York. He said the masses of
                                    people in Manhattan are like those old Western movies, where there
                                    would be a handful of cowboys and thousands of cows. (The "cowboys"
                                    were the longhaired men, who he could recognize.) He said he wanted
                                    to be a cowboy, he had little interest in the cows, and he sure didn't
                                    want to look like one!

                                    Indeed, we hardly notice the traits we can't recognize on people,
                                    and if certain people don't have any of the traits we do recognize,
                                    we hardly recognize those people. They have no more influence on our
                                    identity than do cows with cowboys.

                                    Bill
                                  • zusia@aol.com
                                    In a message dated 5/9/03 10:05:24 AM Pacific Daylight Time, zusia@aol.com ... There are two reasons I felt he might actually lose his identity by growing his
                                    Message 17 of 19 , May 15, 2003
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                                      In a message dated 5/9/03 10:05:24 AM Pacific Daylight Time, zusia@...
                                      writes:


                                      > >As much as I haven't wanted to challenge my faceblind son's identity, I
                                      > >really did want him to get a haircut. I felt he was actually in danger of
                                      > >losing his identity with that floppy Beatle-do.
                                      >

                                      Bill replies:

                                      > Why was that? Did he volunteer that he no longer felt like
                                      > himself? By "volunteer" I mean, "he brought it up, not you".
                                      >

                                      There are two reasons I felt he might actually lose his identity by growing
                                      his hair long: 1) Joey has always had a hard time distinguishing gender and
                                      because of this, it's very important for him to identify gender. Boys with
                                      long hair have always confused him, even angered him-- I'm guessing because
                                      he feels deceived somehow. There have been numerous incidents at playgrounds
                                      where he has actually told long-haired boys that they weren't boys-- and God
                                      forbid they should wear an earring! Recently at a PetSmart there was a little
                                      boy about 6yo who was the manliest little tyke you could ever imagine. He was
                                      sturdy and stout and looked like a little biker dude. Was wearing jeans and a
                                      bomber jacket. He had no bangs and he wore his waist-length blond hair in a
                                      tight braid down his back. Joey referred to him as "she" when they were
                                      looking at fish together and I discreetly corrected him by repeating a
                                      reference but saying "he". Joey got my drift but wouldn't accept it. He
                                      followed me around the store hissing that the child was a girl. He spent the
                                      rest of our time in the store trying to reconcile his misperception. He
                                      insists that boys do not-- should not-- wear long hair.

                                      In fact, the only reason he had decided to grow it-- and it was only his
                                      bangs he wanted long, not the rest of the hair-- was because some cartoon
                                      character on a show he watched wore long bangs. He told me this right from
                                      the start.

                                      2) The other reason I felt he might lose his "identity" if he grew long hair
                                      is because Joey has a "look". He is an amazingly beautiful boy-- the kind
                                      strangers stop on the street. Dark blond hair and golden olive skin. Eyes to
                                      die for-- steel grey with eyelashes like black caterpillars. Thick. Dark
                                      eyebrows, too.

                                      When his bangs were in his eyes he lost that "look". It would be like if
                                      George Clooney grew his hair to cover his face. Now I'm not a fan, but I
                                      reconize he's popular, and I'm guessing he learned somewhere along the way
                                      that he looked best, and showed off his eyes best, if he cropped his hair
                                      short. It became his "look".

                                      Personally I don't care how any of my kids wear their hair. But I will always
                                      try to steer them in a direction that shows off their best qualities. In the
                                      end, however, it is always their choice.

                                      Susan Mendenhall
                                      Washington State
                                      "Tempus Puget"


                                      [Non-text portions of this message have been removed]
                                    • Bill Choisser
                                      ... It was so much easier when I was a kid. Little girls wore dresses. Few boys had longer hair, but if they did, you knew they were boys because they had
                                      Message 18 of 19 , May 15, 2003
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                                        At 05:21 PM 5/15/2003 EDT, you wrote:
                                        >In a message dated 5/9/03 10:05:24 AM Pacific Daylight Time, zusia@...
                                        >writes:
                                        >
                                        >
                                        >> >As much as I haven't wanted to challenge my faceblind son's identity, I
                                        >> >really did want him to get a haircut. I felt he was actually in danger of
                                        >> >losing his identity with that floppy Beatle-do.
                                        >>
                                        >
                                        >Bill replies:
                                        >
                                        >> Why was that? Did he volunteer that he no longer felt like
                                        >> himself? By "volunteer" I mean, "he brought it up, not you".
                                        >>
                                        >
                                        >There are two reasons I felt he might actually lose his identity by growing
                                        >his hair long: 1) Joey has always had a hard time distinguishing gender and
                                        >because of this, it's very important for him to identify gender. Boys with
                                        >long hair have always confused him....

                                        It was so much easier when I was a kid. Little girls wore dresses.
                                        Few boys had longer hair, but if they did, you knew they were boys
                                        because they had pants on.

                                        I've never been worse at determining the sex of people than is usual
                                        (some face blind people do have that problem). One disadvantage we
                                        all have in a group, though, is we don't KNOW the people. During the
                                        age when boys and girls look alike, all the other kids in the class
                                        learn which faces belong to little boys and which ones belong to
                                        little girls. If you can't recognize that a kid is Tommy though, it
                                        doesn't help one bit in sexing that kid to know that Tommy is a boy.

                                        >In fact, the only reason he had decided to grow it-- and it was only his
                                        >bangs he wanted long, not the rest of the hair-- was because some cartoon
                                        >character on a show he watched wore long bangs.

                                        Very understandable. Quite a few faceblind people are very attuned
                                        to what is on their foreheads. I've known men very adamant about
                                        their bangs, and I very much like to see a bandanna on my forehead.

                                        >2) The other reason I felt he might lose his "identity" if he grew long hair
                                        >is because Joey has a "look"....
                                        >
                                        >When his bangs were in his eyes he lost that "look".

                                        When he gets old enough, you may find you're better off to let
                                        him do the trimming there. I was that way about that area when
                                        I had bangs, and I'm that way about my beard. Any time anyone
                                        else trimmed such I then felt I did not look like me, and my
                                        reaction was "Hideous!". Other people just don't understand
                                        the ratios, shapes, angles, or whatever, that we latch onto to
                                        know ourselves. I can trim on myself and know intuitively where
                                        to cut and where not to cut.

                                        I am also very picky about my bandannas. They have to be
                                        folded a certain way, and then they have to be put on my
                                        head with the pattern centered, and "right side up". Yeah,
                                        I know there is no "up" for such a pattern, but I feel there
                                        is.

                                        Bill
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