THUGHT PROVOKER 63

To My Baby

     Ten minutes ago I overheard my friend, a new mother, say the following to her baby, born this morning and born blind. “Dear baby, child of mine. I am so sorry you are blind. I am so sorry this has come into your life, my life, our life. Don't worry, little one, I will take care of you for the rest of your life.”

     When she became pregnant, I'd heard there was a huge chance for complications. Leaning on my white cane, I was waiting at the door to enter her hospital room when I heard the doctor say, “The child is blind. There is nothing that can be done.” His voice was professional but sad, then he and the other medical people left. Even their footsteps sounded sad. Now it was just my friend and I. It was only after my friend had spoken to her newborn with that heartfelt tone in her voice, that I realized she hadn’t noticed I was standing just inside the door.

     My poor hurting friend! I hoped once she recognized that I was there that my presence would not add additional stress to what she was already experiencing, yet I wondered what might be done? And, when?

RESPONSES
e-mail responses to newmanrl@cox.net

**1. I have personally had a little baby diagnosed as being legally blind at 6 1/2 months old. I to had those same thoughts that the mother had. I had never been around or even known anyone who had any visual impairments that could not be corrected with glasses. I did not even know that blind canes existed until
I took my drivers permit when I was 16. I really hate to say this but this is how the sighted world is especially if blindness does not touch anyone in your family. I got associated with the National federation of the blind when my child was 4 years old and I have learned a whole lot from them and people that are in their organization. I suggest that you get this mother involved as soon as possible I remember going to my first state convention and I thought
I was all alone until I got their and their was more than one parent that I could relate to and they had a ton of information for me. I can tell you if
I had not come in contact with the NFB I don’t know where my son would be today he is eleven now and taking Braille in school and does have a cane and uses
it well now. these are my thoughts

Karen USA

**2. Don't worry, little one, I will take care of you for the rest of your life.” I suppose a mother's first instinct is to protect her child from the world's dangers, real or perceived. When my son, and later my daughter, began to investigate the world, I had to resist a tendency to hover - and they are sighted. If I had a visually impaired child, I hope I could do the same, that is, allow the child the freedom to explore, and maybe even stumble and make mistakes. Every child will somehow experience skinned knees and scraped elbows. It's part of growing up and learning to take care of themselves. Otherwise, what will our children do when we are no longer around to protect and take care of them?

Carolyn Clearwater, FL, USA
goldie@ij.net

**3. Hello,
I read your thought provokers, but rarely reply. However this one is a thought provoker I can respond to. I can well understand the mother's concern and
her feelings. My daughter is now 15, and although we didn't know for sure that she was blind until she was about a year old, my initial feelings were much
the same. I feel much different about her blindness now. She is just a child who happens not to see.
None of us wishes to have a child who is blind. We all want that perfect little bundle of joy.. ten fingers, ten toes and eyes that see. When you have a
child that doesn't fit the picture you have, it's the death of a dream and the grieving process is a normal part of that. Plus, you have a tiny, helpless
human being who can't see. The mother's response was a normal response. All we can do is give her time to become accustomed to her child's blindness, give
her the time to grieve the loss of that perfect child and be there to offer support and resources when the time is right. I think we must also realize
that our first offers of support may not be accepted, but we have to continue to offer. Mom will hear what she needs to hear when she's ready.

Pat Linkhorn
Cumberland, OH
Mom to Krystal, 15, who is blind due to ROP

**4. I am surprised that the mother in this story, who has a friend who is blind, would say such things to her baby, who has been born blind. If I were the friend in that situation, I would march straight into that hospital room and set the mother straight. I would say, "It doesn't have to be that way. Look at me. Do you think my parents felt that way when they discovered I was blind? If they did, I probably wouldn't be standing here today. With the right attitude and a lot of love and support and help from the right agencies, your child will grow up to be just as independent and productive as I am."

Abbie Johnson Sheridan, Wyoming, USA abjoh@wyoming.com

**5. There was a time when I might have walked in, reminded her of our friendship, and expressed my disappointment in her attitude - but I've since developed a greater level of empathy. I'd probably walk away, let her have her time alone, and come back later with a congratulations card or something. I'd ask her if she had any questions about blindness. If she weren't ready to ask them right then, I'd let her know I was there to answer them when she was. Yet,
I would eventually subtly disabuse her of the notion that she needed to care for her child for the rest of its life. There are numerous times when blind people should, and must, stand up for their right to be treated as equals (without special favor or pity) but that is not one of those times. Instead, that moment would be HER time, to be irrational, to be sad, to be whatever she wanted to be - but most of all, to be alone. If she were still making comments like that five years later though, I would not hesitate to "tear a strip out of her."

Alyzza H. Alberta, Canada
ulig@telusplanet.net

**6. I am struck by the fact that the heart broken mother's friend is blind. So it isn't as if the new mother knows nothing about blindness. The battle we wage for the hearts, the minds and the souls of our sighted friends is the toughest battle we have to face. It is far more difficult than all the court cases and fights with the agencies we've had to endure. But it is the most important of all of them.

Arie Gamliel NFBtalk

**7. Thought Provoker 62 brings up an old hobby horse of mine. Who is the patient here? With news like this, baby is no longer the patient, the mother is. The doctor says that nothing can be done. How arrogant. He thinks that because he can't do anything, that is the end of the matter and just walks away. They must learn this sort of behavior in Medical School. The mother badly needs counseling by some one who is familiar with blindness and blindness issues. Then given the names of support organizations and then parents who also have blind children, and are coping well. The mother needs her friend with the white cane, but the other professionals should be waiting by the door when the doctor came out. Its probably too much to ask the doctor to introduce them. If he did at least he would be down off his high horse for a minute or two and realize that a lot can be done.
Have a happy day,

Alan McClintock Cairns, Queensland Australia

FROM ME: What professionals should be lined up to come in and assist the mother? what peers?

**8. This is a tough one. I know that such things are especially
hard on mothers at first, but they're also the ones who can most easily adapt to something like blindness with a little help and support. A blind child's mother can be their most powerful motivator and advocate if she knows what she needs to do.

I think the best thing in the world to do in a situation like this is to go in there and tell her that she and her baby will be okay. Some of us
are more suited to do this than others I think. Does she view you as a very independent and capable person? Sometimes it's hard to answer that question, and maybe you haven't thought about it much. Unless she has some very extensive experience in this area, I can almost promise you that she has thought about it.

If she's the sort of person always trying to do things for you, it's going
to be a lot of work for both you and her. Our independence is important to us. That said, she's almost going to have to fight every step of the way to get her child proper training, Braille, a decent education, and the chance to lead a full and enriching life. Just about everyone else around her is going to act as if her baby is helpless. She needs to be prepared for that and prepared also to push her child to be independent in spite of all of this.

I guess I haven't said anything the average independent blink reading this doesn't already know, but it's worth saying anyway.*smile*

Joseph Carter NFBtalk

**9. My thoughts.....I would expect the mother's response to be as described. The reality is that blindness does affect the entire family unit, and not just the afflicted individual. I can understand the parent's desire to "make it better" and provide care for the child. The reality is, however, that the parent will not and should
not expect to care for any child for the rest of their life. How good for the mother to have a blind friend to help challenge irrational perceptions and provide a model of what a successful person living with a visual disability can be. I believe that can be invaluable. I
believe that aspects of being blind are very wonderful, e.g. how the physical appearance of things and people do not influence overall
perceptions, the creative element that is stimulated in the brain by using imagination and senses other than vision, and character elements that develop with blindness. I doubt, however, that many - if any- individual would choose to be blind. I know that having suffered myself from retinoblastoma and losing the majority of my sight since a few years after birth has not been enjoyable. And, even though I have tried not to allow it to be a barrier in whatever I wanted to accomplish, if I had the chance I would not be blind but would want to maintain the previously mentioned positive attributes that I believe blindness has helped create within myself. While I do not always like being visually impaired, I do welcome the chance to represent my diversity to the world, defend the rights of all to pursue life and the options that it offers, and will try to do my part to chip away at the barrier of ignorance that exists in our society concerning the disabled.
Who knows, the young life described in this scenario may be a leader in discovering the cure for cancer, be a teacher of under served
populations, or promote world peace....being blind should not inhibit the child's potential.

Arnold Abels, Ph.D.
Training Director
Staff Psychologist
Counseling Center
University of North Dakota
Grand Forks, North Dakota USA

**10. This is something my youngest sister and I often talk about as she lost most of her vision as a new born baby, and I as an infant. Neither of us was born blind, but our vision loss resulted from various
circumstances. My sister had a high fever, and I had encephalitis when I was four months old. My parents knew that I had this disease because I had seizures in a movie theater of all places. They rushed me to the hospital where a doctor had diagnosed me with encephalitis. My brain activity was immediately tested, and fortunately for me the only damage was to the vision centers of my brain. Of course my parents didn't know this until my aunt moved her hand in front of my face and I couldn't trace her movements.

In the Native American culture, my sister and I wouldn't have survived because having a disability wasn't " acceptable" in our culture.
Neither of us would have married because the warriors wanted their sons and daughters to be whole so there would be nothing wrong with their children. Fathers certainly wanted their daughters to marry a man who could provide for her. Today however, our way of life is modern, but the stereotypes still remain and are running ramped. People with any kind of a disability are still looked upon having to be cared for instead of being allowed to function outside their home. At this point, I don't know of a woman on the reservation here in Wyoming who has had a blind baby but if one does exist, I do hope that she is as loving and hopeful as my own mother was. I'm told she handled it like a trooper!

Bonnie Ainsworth Laramie, Wyoming USA

**11. First and foremost, the mother needs to take time to get over the shock/grief she's experiencing at the moment, reflected by what she's saying to her newborn.

Secondly, and hopefully this will happen with the blind friend who is waiting to enter the room, the blind friends should talk to the mother and show by example in the first minutes by the blind friend walking alone into the room, and in the following weeks/months by the blind friend showing the mother what things blind people are capable of doing, showing the mother that being blind isn't a tragedy; in this way, this will allow the mother to try and change her negative views on blindness.

Thirdly, The mother needs to join an organization of parents of blind children so that, in the first place, she'll have blind role models to follow and secondly so that she won't commit the error of rearing her son as the stereotypical helpless blind person. Instead, and with the help of the blind friend and of the organization, the mother will raise a psychologically healthy blind person, helping out in changing and eradicating the blindness-related stereotypes.

Gerardo Corripio

**12. OK, seems like this woman has the all-too-common notion that blindness is a tragedy and also that a blind person will never become self-sufficient. If she isn't educated about the reality of what blindness really is about, she's going to raise a very over-protected child. Hopefully our narrator will help in her education.

Chris Swank Fortuna, California USA

**13. What an interesting and complex Thought Provoker! First of all, I can readily understand the new mother's feelings and words. The mother wants what's best for her new baby and probably feels a great deal of guilt (blaming herself) for what she may perceive as the new person's "tragic life" to come. The feelings and words are a product of our society's mal-adjusted idea of what is appropriate and acceptable. In my personal opinion, if this new mother doesn't acquire a personal level of healthy adjustment to the disability and her attitudes toward it, the child will indeed be faced with a tragic and unnecessarily stilted/limited existence. During the past many years, I've seen the results of similar situations more times than I care. A parent, usually a mother, feels guilt for giving birth to a child with disabilities or "permitting" such condition, so does everything that she can for him/her, except for expecting/fostering an independent "I want to succeed" spirit. At one time, and some people still do, children with disabilities were institutionalized, because the parents and some professionals either couldn't or chose not to deal with the situation. On the other hand, this mother has the opportunity to take this new person and turn him/her into a self-confident, independent and successful adult. The blind person, who is writing about the situation, may be a good beginning source for information and support, if the mother decides to take advantage of
it. Advocacy for and involvement in appropriate services, education and socialization opportunities must be achieved. Although I'd strongly recommend that the child's mother, father and any siblings become involved in a support group for families of blind children, perhaps one of the first steps is to seek and accept help.

Doug Hall Daytona Beach, Florida

**14. Was I that baby almost 50 years ago, born a twin and prematurely? Are there still medical people who lug old attitudes around that there is no life after blindness? And the friend, the adult blind friend with the white cane...the one who could be a model and mentor for Mom, the child and medical staff. Blindness is one piece of who we are, not the whole of who we will become if only we are allowed the freedom to do so. Yes, Mom, you have a baby who is blind but that baby has personality, instincts, some of the same traits you do if only you will discover them. What might this
child teach the family? Baby, oh, baby, you are a beautiful child to be
cared for and to be taught but not to be the family project sheltered from the world of opportunity in which you are born. Perhaps it's not the child who needs to do the adjusting but the family and the medical staff.

Jo Taliaferro, Whit and Salaam

**15. She speaks out of fear and ignorance. She believes blindness to be the worst of all possible worlds, as I've heard that some people believe. As I see it, she has a choice: She can come to terms with the child's blindness and realize that while there will be many hurdles to overcome, blindness can be the least of them. What if the child develops leukemia as a teenager, or already has the genetic predisposition to Lou Gehrig's Disease or Alzheimer's? What if the child is the victim of a rape or abduction someday? What will he/she do when confronted with issues of sexuality? Blind youth as well as sighted have the same basic wants/needs as each other. What about drugs and alcohol? What about passing math, or science, or social studies? What about the bully down the street?
Now, at this early stage in his or her life, though, and of the life of the new mother, neither can know all these things--and more. Like how will the child be affected by quarrels between his parents? What of his or her self-esteem when teenage acne is involved? Will the kid grow up to be a decent husband, wife, lover, parent to their own child or children? Will they be taught that they may aspire to the same wants, needs and troubles as the rest of the world? I think if I were this friend, I would let the mother come to terms, at least for the moment, with all this--I'm told (or I believe) that all new parents must do so. Being the blind child, I've never actually know what it must be like for the parent or parents of one to not only be confronted with all the anxieties associated with the raising of a new person, much less one who's blind. I can only speak from my own experiences, and say that yes, it's good to take care of one's child. But let the child be an adult. Teach him to run, fall, cry, and get up again. Let him have the dignity to be and do as he sees fit, and to make mistakes and learn from them. Let him be afraid--and let him learn to conquer those fears, and to understand his own limits on his own terms. Let him climb trees if he wants to, and let him stop when he would have it. Be afraid for him, but don't let your fear rule you or him.
Love him, but don't be afraid to deny him or punish him when needed. Blind or sighted, he'll never be perfect; don't expect perfection, but expect the
best out of him that he may give. Be a stern taskmaster when called for, but a patient listener when that is called for. If you do all this, I would tell the mother, you won't get a perfect human being, and maybe you won't get someone who will fulfill all your expectations all the time. You may get someone who might choose a mate of whom you might not approve, or someone with the temerity to choose a career which you yourself might not have chosen. But if you let him do and be and grow, and give him the tools he needs to do all this, you will get someone of whom you can be proud. Blind or sighted, it should not make the difference. Cheers!

John D. Coveleski New York USA Jcoveleski@mindspring.com

**16. In reading this thought provoker narrative at first glance, the mother is saying three things. First, she is basically saying, "oh, you poor baby, you're blind". Second, she is setting the stage for doom and gloom because the baby's blindness is going to affect the adjustment of the baby, herself, and the family. Third, she is setting the stage for sheltering and over-protection of her baby from harm with her statement, "Don't worry, little one, I will take care of you for the rest of your life.” If this is the case, then she needs to be surrounded by other blind parents and blind children who could show her that all is not lost and that it's not the end of the world. This, of course, is based on the assumption that she's never been exposed to blind people before, or doesn't know the capabilities blind people have to be able to be successful and not be sheltered. If she's never been around blind people previously, this adjustment process will be hard for her, especially if she's a first-time mother. On the other hand, she may not be feeling sorry for her baby, setting the stage for doom and gloom, or talking about being over-protective of her baby. She may have already been educated about blindness. She may just be expressing guilt at having given birth to a baby who happens to be blind. After all, every woman hopes to give birth to a perfectly healthy baby despite doctors' warnings of possible complications, and the family hopes the same for her. Unfortunately, blindness, though a minor condition compared to lung or heart problems that could lead to death in the early stages of childhood, does not fit into meeting the criteria of having a perfectly healthy baby. When a woman, particularly a first-time mother, has her high hopes and/or expectations of having a *perfectly healthy* baby, those hopes and/or expectations are dashed upon learning about even a small ailment or deformity. Regardless of whether or not she had high hopes and expectations of having a *perfectly healthy* baby, though. There are also the friends and family members in the equation. If there are other family members--husband, siblings, parents, etc.--that are involved in supporting and encouraging her as a first-time mother and
have the same hopes of a perfectly healthy baby, they, too, will be just as deeply affected. Some remain supportive while others turn their back and shun her and the baby. Perhaps she's wondering who, of her friends and family, will remain supportive and encouraging. She may be fearing the worst--that
she will no longer have no friends or family to depend on; that she and her baby will be the only ones in this walk of life. Based on this possibility, by saying that she will take care of her baby for the rest of the baby's life, she's actually assuring the baby that, "while everyone else may be running away from you and I, I'm still here for you unconditionally". Yes, regardless of whether or not she's been exposed to blind people, she's hurt, as any
mother would be when their hopes and expectations are dashed, but she's willing to give it her all no matter what everyone else may say or do.

As I read the narrative, my heart cried out to her, as I felt sorry for her. It wasn't the fact that her baby's blind. Rather, the fact that her friends and family will learn about the baby's condition sooner or later and may run away from her and her baby; thus, the reason for my response above. After all, no matter how prepared she may have been for a child with a disability, she has to endure friends, family , and strangers staring or making negative comments about her and/or her baby; thus invoking guilt upon her. While there are very nice people out here, there are also very cruel ones as well.
Those whom you thought were very open and accepting of anybody *different* from them you find out are just as closed-minded as those who are outright closed-minded. This, I have found to be especially the case when that difference occurs in the family. So long as that person who is *different* from them is not part
of the family, there's still that maintained distance to compensate for their fears. As they say, "not in my backyard". If that *different* person becomes part of the family, though, then they have to confront their fears with fight or flight.

Linda

**17. When a person's guard is down, they'll generally say what they truly believe, from the heart. So, this lady had her defenses knocked down by the news that her new baby is blind. Not knowing anyone else was within ear shot, she talked with her baby and said what she had learned, (directly or indirectly), about blindness through her whole life.

If she had seen her friend standing there, she would not have said this to her child, and would probably deny, even to herself, that she believed it. But, her friend has a lot of gentle educating to do to help this mother do what's truly best for her baby, and that's not to promise to take care of the baby for the rest of her life!

The mother may not consciously think that her friend is different from other blind people. But, she probably does. She doesn't truly have the expectation that her baby will grow up to be independent and
self-sufficient.

So, although the friend might have been trying to teach by example, now might be the time to introduce the new mother to other blind people and parents of other blind children who can really help her learn about her baby's potential. It's going to take, time, maybe even a lifetime. But, it's important for the baby's development and growth as a well-adjusted blind person. It's clear that the doctors can't do it; they were sad and left quickly after imparting the news. So, the blind friend has to gently guide the new mother toward the positive attitude toward blindness, which she may have thought she already had.

Cindy Handel Willow Street, Pennsylvania USA

**18. I think she was reacting as most mothers do to their newborn child. She was saying that she loved her child and would do her best for it no matter what. She was trying to say that she would not reject it because it wasn't perfect. My two daughters are fully sighted capable young women. One has three healthy children of her own. Yet when I hear discouragement, her voice congested with a cold or just a note of sadness there, my mother's instinct to
protect kicks in and I want to fix what ever is wrong. I can't of course as she lives half way across the country and I don't own a personal jet to whisk to her side, tuck her up with soup and take her small ones for a few hours to let her sleep, hug her and waive my magic check book to solve financial problems or punch the boss out who has upset her. But she is my child and my mother's heart will long to do those things. My mother feels the same toward me. She is in her seventies and I in my fifties, yet she frets over my safety when I go about my business. She wants to rush in to solve my troubles and
she will probably do so until the day she leaves this world. However, that same worrier, would take the time to teach me to cook, jump rope and let me run across the yard at full tilt and hold her breath and pray I didn't hit the pecan tree. She kept her fears to herself and helped me learn the skills I needed to grow up as an independent confident woman and I try to do the same. I once sent her the Bette Midler song The Wind Beneath My Wings because she was that for me. Last year, my youngest sent me the Salene Diyon song Because you loved me. The sentiment is the same. Hopefully, the mother will take courage and learn the things she needs to help her child be the best she can be and be able to let her child get a few bruises in order to learn that they are just a part of living.

DeAnna Noriega Colorado USA
quietwater@codenet.net

**19. Certainly the mother is disappointed that her baby was born blind; of course no one can deny this. In a case like this, one can express her disheartenment in two ways:
One, while she is grieved that the blindness occurred, she can resolve that her baby is going to have a normal life, to live and function independently, and to take care of himself; and she can work toward that objective, starting at that moment.
But two, the mother is doing exactly the opposite, in allowing her baby's blindness to make her so distraught as to place her, and the child, on quicksand. At times I have thought that though my parents in the '50s and '60s reacted in the same way, that certainly parents in the 21st century were more progressive in thought and action toward their blind children. While that is certainly true to a degree, some of today's parents have the same attitudes I saw 50 years ago: For instance, a year or two ago, Dick Edlund, still one of the leaders in the National Federation of the Blind of Kansas, spoke to parents of students graduating from the Kansas State School for the Blind, of the importance in their not holding their children back from using the white cane; personally, I was astounded that some parents still do, just as mine did. In short, while much progress has been made in the blindness field (and no one can deny that), we still have a long way to go in educating the public about the fact that blindness is simply a characteristic, that all characteristics contain positive and negative traits, and that therefore, blindness is simply
a normal characteristic, nothing more, nothing less.

Jeff Frye Overland Park, Kansas (USA)
jfrye2@kc.rr.com

**20. first of all the mother thinks the baby is helpless because it is blind, and secondly I think the mother needs to learn that the child isn't helpless it can still do a lot even without its eyes.

kristen USA

**21. This thought provoker comes at an interesting time. My husband and I are working so hard to have a family. Of course, the thought of retno blastoma is always at the back of my mind. Since the retno blastoma foundation never responds to any e-mails, they haven't shed any light on our questions. We plan to forge ahead and see what happens. I do wonder about the doctors. When my parents learned of my diagnosis and learned that I would be blind, the doctor
told them that it was up to them if I would be helpless or competent. They were responsible for making me what I would eventually become. I understand the mother's desire to care for her child, but she may not be there the rest of his/her life. The sooner the mother understands this the better! She can be a compassionate, loving parent while allowing her child to grow up like other kids. My mother still hides in the house when I jump the horses over fences or do other interesting things. She still gives me the freedom to do the things I love.

I also wonder why the doctors said that nothing could be done. Many things can be done. The child may not have sight now, but science increases the chances that something may happen in the future. The doctor should be saying that your work is long and hard. This is what you need to do to prepare for the eighteen years ahead. I am glad I don't have that doctor!!!

Marcia Beare, M.S.W. Martain, Michigan USA

**22. The mother is devastated and sad for her new baby and rightfully so. Most of us who are blind and have been so for quite some time do fine with it and get on with life. but to be thrust into blindness is devastating to those not experienced with it. The best thing she's got going for her is that she has a blind friend to help her out, to show her the future is not really so devastating. The friend should become an important part of their lives

Tom Rash, Executive Director AUDIO VISION Radio reading service
audiovisionradio.tomav@verizon.net
www.audiovisionradio.org

**23. The first thought that came to my mind is where are you, just inside the door, or just outside the door? In any case, I am not at all shy about expressing my feelings. I would greet the lady, then offer a little sympathy and a lot of help as the child became older. It is not a tragedy that the child was born blind. As most of us know, blindness is an inconvenience. If I were forced to suffer some disability, I would much rather be blind than unable to move about or care for myself. As the child gets older, it is most important to teach it what it can do and downplay the things it cannot do. Feeling a little sympathy is natural, but sympathy should be left behind when the mother and child leave that hospital room.

Dick Myers Japan

**24. The woman was told when she got pregnant that there were bound to be HUGE complications. She had plenty of time to prepare herself or make some decisions otherwise about carrying the baby to term. Obviously she refused to believe what the doctors were telling her. Certainly it might have turned out the other way, but it didn't. I don't understand why she's so upset or confused.

Patricia Hubschman New York USA

**25. I think this relates fairly closely to Thought Provoker #06 (4/27/2001) -
Blindness and Babies.

This is a tough issue. My parents were told, at birth, that I was a
normal, healthy young male. The doctors did not pick up on the
occulotaenous albinism at the time, and my parents never really noticed much at the time either. It was revealed, a few months later, that I had albinism (as I really didn't like the sun shining in my eyes in the car). The doctor's advice was to "stick me in a corner with a few toys, because I'd never amount to anything."

This pessimistic viewpoint is one which, I hope, only a few doctors share nowadays. But I've heard of more than one situation where people have actually listened to such advice. The results of this, I will leave to the reader's imagination.

In the story provided, it seems that the doctors may very well be of a
similar mindset, but perhaps not to the same extent. They are treating it as a "horrible disaster," and one can't really blame the mother for believing that she will have a "horrible burden to bear for the rest of her life." That, in essence, is what she has said in her statement.

What has to be done? There has to be a great deal of education and information available for these parents. The fact that there is a friend
of the family who is blind may be a great help, because that person may have contacts with local organizations which could be of use. What's more, one would hope that the parents would see this friend as at least moderately "successful." That isn't to say that this friend w ill have any idea on how to best raise a blind child (so that they, for want of a more elegant way of saying this, will be well socialized and independent). But it might help.

The biggest thing that must be impressed on any parents facing this
situation is that they do NOT need to "take care of the person for the rest of their life." (I am assuming that blindness is the child's only limiting factor.) Over protectiveness will serve no good in the end. I believe my parent's philosophy served me well. They went with the viewpoint that they'd "let me try anything I wanted to try, but not force me to do anything I didn't feel safe doing." (within reason.) Obviously, trying to drive a car in downtown Ottawa at 5 PM on a Wednesday evening would be a bad idea. But you get the point.

Education, education, education. It has to start right from day 1,
really. The parents need to know that, while they may have to do things "differently" in some cases, their whole life does not have to come to an end. In all other respects, that child will be a normal human being, with normal human feelings, and normal human needs.

That's my thought on it. Education.

Anthony Tibbs Ottawa, ON, Canada
tibbsa softhome.net

**26. When a child is born blind, do the doctors often know right away? I am congenitally blind, but no one knew that until after a few months after I was born. Eventually my parents figured that something was wrong when I wouldn't reach out for toys and such. They took me to a doctor who initially said that there wasn't anything wrong with my eyes.

Michael Gorse Blind-X, http://mgorse.home.dhs.org --

FROM ME: The above response and the one following I feel are a important side note, where parents may not face the fact of blindness in their new-born, but may find out shortly that the child was indeed born blind.

**27. Michael,

Do you have ROP? I did and my parents didn't know I was blind until I was about 4 months old. I was premature. The first ophthalmologist they went to couldn't tell them what was wrong. He beat around the bush for quite a while and another eye This was fifty-three years ago. I wonder if parents usually know a lot earlier now. In my case, there were so many things to think about at birth that it might have taken a longer time to notice. A friend actually brought it to my parents' attention because I wasn't tracking when they played with me. I guess I wasn't following objects with my eyes as they played .doctor who was around at the time talked to the first doctor, then he told my parents I was blind.

Leslie Miller Blind-X

**28. I have not been blind since birth, but was a Juvenile Diabetic. I read the statement made by this poor mother, full of guilt and love, seeing my mother's reflection in her words. My life was totally shaped by well-meaning care givers that smothered me to such an extent that I rebelled in every way I knew how. Perhaps if someone can get to her before she affects too much damage and personality crippling enablement, she will be able to see other children and their parents in how they operate. So much capability in our blind universe is stifled by loving manipulation.

Pamela McVeigh Louisiana USA
Pamelot@cox-internet.com

**29. Who wants to have a human being born disabled!?! the mother was only giving her first reaction. Granted, she may not know much about being bind or otherwise disabled, so she will need to be educated. The friend will have to broach the subject very early in the process, not allow the mother or father or family get into the mindset of seeing the baby as “the poor child.” Start the family early to know what is possible. Get them involved in a group for the blind. It is the peer crowd that will best teach them what is possible. Yes, a professional counselor or social worker can get them started, but it is that old saying of “seeing is believing” that will turn the tide for this new baby.

Cherry Brown USA

**30. I was adopted. When my mother found out that I was blind (at about 8 months' old) her first thoughts were: "She will never see a red red rose"; and "She
will never see the view from Sublime Point" [a lovely view in the Australian Blue Mountains]. Some people wanted to know if she would give me back. Of course there was no way of that! After this, my mother just got on with the business of helping me lead a normal life, and one to the full.
How ever, these first thoughts of the lady in this new provoker remind me of many things. One thing this lady will definitely have to learn is when to let go , a thing many parents (including my own) have to come to terms with at some stage in our lives.
It's important to teach your blind child as much as possible, but as they grow into adulthood, let them become adults just like everyone else, and please let them make their own decisions.

Nicola Stowe Australia

**31. Hi my name Kizzy Lanier. I live in Mansfield Ohio.
I am blind. Tell your friend that she not be a afraid of her blind baby

Kizzy USA

**32. I read the responses to this thought provoker. Like a lot of respondents my parents didn't know I was blind until I was a few months old. They took me to a doctor and like most people wanted a second opinion. He referred them to Atlanta but told them they could send me to doctors but the best thing they could do for me was send me to school so I could learn. My parents followed that advice and I am an independent adult. Back then we didn't have agencies
that worked with blind children like we do today so I feel lucky. I do still have to deal with their low expectations but I overcome. This mother and
child will be all right.

Angela Farmer Dothan, Alabama USA.

**33. Regardless of whether the child has a disability or not, parents have to learn to let go sooner or later and let their children become adults. Not only have I seen parents with disabled children shelter their children, but I have also seen likewise of parents with sighted and able-bodied children. Yes, I understand the feeling of always wanting to be there for your children, as the natural instinct is to be nurturing and protective, but, unfortunately,
the line between being protective to a degree and letting your children become independent is a very thin line.

As for the mother being warned by her doctor that there would, more than likely, be huge complications and the fact that the mother ignored her doctor's warning, we don't specifically know what her doctor told her previous to the thought provoker narrative. We can just presume that she was told that she would pull through but that the child may be born disabled. If this last sentence was the case, it's possible that the mother was thinking and preparing for other kinds of disabilities, not blindness. Sometimes, when a parent is warned about something, they fear the worst--the baby being still-born to
having other ailments worse than blindness because those worse ailments can cause eminent death. Thus, they prepare for those scenarios rather than look at all possibilities from worst to least, the least being blindness. If blindness did cross her mind, however, it's possible that the reality of the negativity she may have to endure from her other friends and family has hit her now instead of earlier in the pregnancy. This is, of course, with the assumption
that her friends and family may have hinted directly or indirectly to the disappointment they would have if she bore a child who's disabled in one way or another. Many times, people don't want to believe that those they felt they could trust--family members, close friends, etc.--would never turn on them or that their feelings will change for the better with time. Now that she's given birth to her baby and learns that the baby is blind, as I said in my
last response, perhaps she's fearing that those people who may have hinted disappointment will run away from her. IN short, I cannot blame her for her fears.

The thought provoker narrative did mention, though, that she had a friend who was blind, who was standing at the door. If I was that friend, regardless of whether I was standing inside the door or outside the mother's room, as one of the respondents said, I would have waited until she was finished saying all that she was saying to her newborn even if what she was saying was a doom and gloom and the end of the world attitude. This time to talk to her baby
is her way to grieve and should be allowed to happen initially. Once she was finished talking, I would have knocked on the door to let her know of my presence and then interject my comments sensitively as I addressed her comments and/or questions that may arise in our conversation. Let's say, though,
that she did not have a friend who was blind. While the doctor may tell the mother that there was nothing that could medically be done presently to fix her newborn's eye sight, not only could the doctor give her hopes that something could be possible down the road with the growing advancement of science and technology, but he could provide her with information about the services and organizations available out here for blind people. He could even go so
far as to contact somebody from those services and organizations who happens to be blind. If the doctor refers her to counseling, likewise, counselors should be educated about blindness and be just as much aware of the services and organizations available out here. In short, regardless of whether mothers give birth to children who are blind from birth or develop blindness later in life, all doctors and counselors, since those are the ones the mother would
think of to turn to first for help, should be aware of all the organizations and services available out here for blind people.

Linda USA

**34. I would like to say that the reaction of this mother could certainly be considered normal. I mean, when you find out someone you know, especially your own child is blind you wonder what you will do. There are all kinds of resources the mother has available to her. This very second is not the time to worry about them. Right now the mother needs to be with friends and family and the like so she can experience and deal with her grief.

With Love and Prayers,
Kelly J. standfield

**35. "Sorry...take care of you...(and) ...nothing that can be done..." are comments and reactions on the part of the mother and doctor that are reflective of their and society's belief that blindness is a terrible disaster, that the only answer is dependency and that regardless of any intervention, nothing can change the former.
Society has taught and mom has learned that there is a direct relationship between vision and one's value, abilities and potential and that conversely that value decreases with loss of sight. Blindness is not just a circumstance or characteristic, but as someone once put it "a dying". The societal attitude also equates normalcy and lack thereof with vision and blindness. Not normalcy in the true meaning of the word, that is , "the norm" is that most folks can see, but that it is abnormal in a negative sense, in a pejorative sense to be blind. This valuing and devaluing re vision and blindness is in good measure the basis of the fear and resulting negative attitudes, beliefs and expectations. These reactions to the circumstance of blindness are
spread across the whole of the individual and indeed the whole of the blind population, resulting in the stereotyping of the attitudes, beliefs and expectations. We are indeed a minority group and similar to other group responses we sometimes and in fact very often have learned our subordinate roles very well. Someone needs to step in and tell the mom and child the truth, the possibility, the potential of looking at blindness as a circumstance or characteristic. Maybe that person in the story is our hero. Maybe he can help the mom come along through positive information and education and the importance of advocacy for the child to get a meaning full education inclusive of Braille, travel, technology and alternative techniques. Maybe he can mentor by introducing mom to other parents of blind children and other blind parents who know that "blind folks can do stuff". Maybe he can himself and with others get the mom involved
in an organization that believes in the potential and equal opportunity with responsibility of blind persons. And maybe that child can, based on the above foundation, make the best of services and training from agencies and orientation centers who see possibility and equality with vision that is not limited to eyesight.

Ed Kunz Austin, Texas USA

**36. In response to this thought-provoker, it would be good for the mother to learn that she can't take care of everything for her child and that she would actually be doing the child a disservice to try to manage everything in his life. I guess having a child born blind must be an unfortunate occurrence for sighted parents but there are so many opportunities for blind people today. It would be good if someone was able to hook her up with a blindness organization so
that she could talk to other parents in the same situation. It would be good if the organization had a positive philosophy of blindness where a can-do attitude is encouraged. When I was growing up, there wasn't such a thing as a positive blindness organization. My parents got together with other parents but I think that all they did was feel sorry for themselves and take the kids on a few field trips. The mother needs to learn that there are a lot of positive blind role models that her child could emulate. She should also be encouraged not to be too overprotective because that will only hurt the child later.

Mary Jo Partyka

**37. My response to this is a bit off the topic of blindness, but I feel that it needs to be said because it's part of the scenario. If the friend knew that the pregnancy was problematic, what on earth is he doing standing at the door unannounced, eavesdropping on the mother's conversation with the doctor??? How about some respect for new mom? I agree with many of the comments about grieving. I just can't get past the fact that it's incredibly rude to walk in unannounced when you know that the pregnancy has been difficult.

Sarah J. Blake
ropgirl@growingstrong.org

**38. On the first day of my baby's life, she having no sight difficulties but me being very visually challenged, the nurses all remarked how unusual it was for a mother to be playing with their new-borne child as I was. I had her on my lap in the bed and was making different sounds, surprising her with my fingers as if they were in puppet gloves and gently tickling her and enjoying her responses. As I spent 2 weeks in the hospital, myself and baby both being passed
as fit to leave within a few hours of the birth, but needing, it seems, to prove our fitness for managing life in general, I too noticed that most mothers didn't play with their children. Emphasis was put solely upon the need to feed, change, bathe etc.

Having spent my adolescence in a boarding school for blind girls in England, I noticed that many of my friends had a "rocking" habit. It seemed to me that the ones most prone to this were girls who had been institutionalized from an early age. At that time, "Sunshine" homes" were the norm for blind children. Babies, as soon as they were diagnosed were often shipped off to these homes, the parents being convinced that they could not do as well for their offspring as these homes, who were "expert". I remain convinced that this rocking habit derived from those early days, when the children did not
receive enough stimulus and play. Now I am not saying that anyone who rocks is suffering for the rest of their lives and
is lacking, only that I think this is an indicator and that babies need stimulating from the moment they are borne. Sighted children get a degree of it via visuals without any other person being required, although they would still benefit from such play, but children who do not see need to have the shortfall of such stimulus made up
with sounds and touch, smell and taste. The best thing the friend, waiting at the door could do is turn around and go and buy a really good selection of toys that will fulfill some of these needs, and go back and start the positive process of a new awareness for both mum and babe. Then, hopefully, the
first sounds that baby will hear will be that of laughter rather than tears.

Sandy Ireland

**39. Several thoughts come to mind from this provoker. The sorry reaction seems a natural response to something unexpected of this natural for which one is usually ill prepared. Unless we have had disability touch family or close friends, most of us would have little frame of reference for coping adequately. We don't know whether the doctor was referring to curing the medical condition or coping with its consequences when the "nothing can be done" statement was made. This reminds us of the need for early intervention and outreach to positive input and resources. At the same time the challenge must not be sugar coated to be less than it is.
Thankfully in today's computer age a quick web search would locate the major blindness organizations as a good starting place. We have a much greater ability to be connected than used to be the case.

Bill Outman Daytona Beach, Florida
woutman@earthlink.net

**40. If I were the friend standing just inside the door I think I would go softly to her, give her a hug and tell her that things would be alright but that she had some choices to make. She could hover and try to protect her little one from all harm and then she would indeed have her for the rest of her life, but if she loved her baby, she would try to give her child as normal an upbringing as she could manage. That would include all the normal childhood experiences
bumps and bruises. Because then her child would grow up knowing that she was loved but also be prepared to play an active role in the world. My own mother taught me to jump rope, roller skate and swim. She taught me to cook and expected me to take my turn preparing a meal a week. She refrained from running to stop me from normal play, climbing, running, standing up to pump my swing. Because she loved me, I am an independent woman running my own business
and have raised three children of my own. Yes, she still worries but she is brave enough to allow me to make mistakes and to grow.

DeAnna (Quietwater) Noriega
quietwater@codenet.net

**41. If blindness were a dying, as a previous respondent stated, nothing bad which happens to us in our lives would be positive at all.

Jeff Frye Overland Park, Kansas USA
jfrye2@kc.rr.com

**42. I wonder what training the doctors and nurses and social workers get about disability? There should be units of study during their formal training and also later workshops and/or in-services at their place of work. I

Mary Frenk USA

FROM ME: How should the study units and/or workshops or in-services be structured? Meaning, what materials should be used? If guest speakers are used, who should be brought in?

**43. reading some of the responses written thus far, I agree what the mother is feeling is definitely part of the territory.
My question first of all is how long has the mother known the blind person for? I think the mother has to be allowed to grieve for her child, but what's important is for the blind person who even though is blind and no matter how long they've been blind for and since we don't know what kind of picture has been painted for the mother the blind person has to realize that there not going to be able and rescue the baby from the mother because it to early in the game. The blind person can be supportive, however, the hospital social worker needs to get involved in the way of putting her in contact with those
organizations that provide services to kids and who provide services to kids with disabilities. Now if the hospital social worker doesn't have a clue as to how to get involved like when I was in the hospital after losing my sight, then the blind person could start making suggestions to the mother. It would definitely be better if the blind person knew someone who either had a baby or a child who was
blind to come in and talk with the mother along with taking in the child. Does it have to be right away? No, it could wait for her to get home and situated before things begin to happen. Also, the blind person shouldn't start telling the mother "I know how you feel", or things related to this because these are the last things a person wants to hear no matter how true it might be. A person always needs their time to grieve. Of course there are to many in betweens for us to be able and really define, but going by the information there is this is the best way for things to be handled, in my opinion. Now, if there are any hospital social workers out there who can speak to the level of their involvement please let them do so.

Peace
Luis Roman Hammond, Indiana USA

**44. As I read through these responses, a particular incident comes to mind. When in conversation with a few older ladies, one mentioned that a friend had adopted a baby later found to be blind. The first comment from the other lady was, "Well, didn't they give the baby back?" After my gasp of shock was finished, they added, "No, we told them that the sooner they got her into the school for the blind the better." The problem is that Michigan no longer has a school for the blind and there are so many other options available today.
I felt this incident was valuable to share since these adoptive parents may also have experienced some of the same feelings of grief, shock, surprise and
confusion. They may have felt that they needed to be extra good parents to raise a disabled, adopted child. I don't know the parents so never learned
exactly what their reaction has been. I found the comments of the ladies to be particularly difficult.

Marcia Beare, M.S.W. Martin, Michigan USA

**45. I don’t think a lot of us blind are ready to help in this type of situation. We do have to explain ourselves, how we live as blind people and how we can still be happy and normal. But to counsel a new mother who is in a state of disappointment, in grief, that would be very sensitive. I would want to have assistance from other blind who have skills in doing this. Just because we are blind does not mean we are good teachers or counselors.

Marvin Polk Georgia USA

FROM ME: If a friend like this, one who does not feel they are up to providing the type of education needed, where might they find someone who is up to it? If there are competing groups and or philosophy of thought, approach and all that, how would this friend know which one would be right for the job?

**45. I Agree with the writer who says that doctors and nurses should have continuing education in handling patients who have a disabled baby or is facing a disability themselves. Sometimes the insensitive attitudes of doctors and nurses make a terrible situation worse.

As for who should be guest speakers. I think qualified disabled members of the community. Nobody understands a disability as well as the person who deals with it daily. Who is qualified? A person who has accepted their disability and is making the best of their life.

Janet George

**46. As for how study units and in-service training about blindness and other disabilities should be conducted, not only should guest speakers from different organizations--NFB, ACB, rehab agencies, etc.--be invited, but there should be interviews and internship programs for trainees at the various organizations'
facilities. I have found in the social work and counseling fields that there is little to no training or discussion about blindness or other disabilities.

When I was training to be a Chemical Dependency counselor (I graduated three years ago), there was nothing mentioned about blindness or other disabilities in our lectures or discussions. When discussing cross-cultural counseling, the most that was mentioned was the encouragement to go for training in cross-cultural training. Personally, in both cases, both disability and cross-cultural counseling discussion and training should have been implemented within the required course studies. Of course, this does not just involve counselors and social workers, but it also includes doctors as well, being that counseling and psychology are one of the requirements to be a nurse or a doctor of any kind. As for where the friend might seek out another blind person who is more up to or able to counsel the mother better than they feel they could, of course,
there are people from various organizations they could turn to. As for trying to find a suitable candidate, the friend would certainly have to make sure that the kinds of people they talk to can provide positive views instead of negative, doom and gloom. Because the friend cannot take forever and a day
to sit and interview each person, perhaps the friend can interview/talk to different people about the situation, which might help them in finding someone suitable or network with someone from those people he/she talked to. As soon as he/she has found someone, then the friend and the mother with her baby
could meet with that new person at sessions. Not only would the mother receive help, but the friend might be able to better help the mother than they felt they were able to previously.

Finally, I am glad that someone brought up adoption in this forum (Resp. 44), as adoptive parents of disabled children, too, endure the grieving process as birth mothers do. In many cases, the adoption agency does not tell all that needs to be known to the adoptive parents for fear of the adoptive parents backing out on adopting the child they chose among all the referrals. Unfortunately, the adoption agency's idea of this philosophy is so that they can
make money. Even if there is a note mentioned about the child's disability in the records, it is very much down-played for the same reason. To best sum it up, it's a "buyer beware" philosophy. I, myself, am adopted (I was adopted at age eight years from the Philippines). Yes, there was mention in my
records about my being blind, but there was no further note about it- whether I was able to read large print, needed a cane to travel, etc. Upon my arrival to the States, one of the first things my adopted mother noticed was that I did not have a prosthesis in my right eye (my right eye never developed).
I will never forget it because, appalled, she said, "oh, you don't have an eye there", and she backed away from me as if she didn't want me near her anymore. I could not figure any of this out as she stood there staring at me for what must have been two minutes. The condition of my right eye had never been
discussed before, and, if it was ever noticed, there certainly was no mention about it or horror attached to it. I think it was within a year of my being here that she took me to get a prosthesis, but she complained, moaned, and groaned about it the whole time. Other things also happened since then (my
arrival to the States). She had to fight with the public school system to let me in because of their apprehensions about having a blind student and all the accommodations they might have to make; she was pulling her hair out of her head, as it were, over this one. Along with the above two was dealing with my lack of understanding about my blindness since nobody in the Philippines ever really discussed the conditions of my blindness with me. My adopted
mother never knew that I thought all that time that I could see like everyone else since I had light perception until I started talking about my being able to drive. So, not only was she dealing with her own emotions upon all that she had learned and had to do within the first year, but she also did not really have the tools to help me deal with my feelings of devastation upon my dreams of being able to drive being shattered. Thus, a lot of her emotions were expressed through anger taken out on me--being constantly blamed for the high medical insurance bills from my eye appointments, and more. My adopted father did not make any stink about any of what was going on, though. He seemed to take everything that was being learned about my blindness with a grain of salt. Then, too, he was working a lot, and my adopted mother was doing most of the work of getting me enrolled in school and scheduling my medical and eye appointments.

Sure, my adopted parents made sure that I was networked with other positive blind friends and role models, but I did a lot more
of my networking with blind and sighted friends on my own upon my parents' divorce two years after I arrived here to the States. If it had not been for all the blind and sighted friends I had, all the things, including my adopted mother's horrified reaction about my eye, that happened that first year would have left a much deeper scar on me than it did. I am quite sure that if she was more informed or if she had the right tools through other sighted parents of blind children or blind people in general, things would have been better for her and I. Of course, she would have had to take the initiative to try to understand me or ask questions with sincerity as opposed to playing lip-service.

Linda

**47. grief, that would be very sensitive. >>

I've had to do this. The mother called me about her baby. The doctors had wanted to take out one of her eyes and the mother told them no. It later turned out that she actually had vision in that eye. But yes, she's legally blind. The mother had been crying until we talked, and she realized a blind child could grow up into a productive adult. I think my refusal to add pity to the conversation was a big help. I just told her that help was available, and crying, though understandable, would eventually stop, and that she had to be ready to advocate for her daughter then. At the time she agreed that Braille would be needed. later, seeing her daughter had some vision, she changed her mind. I thought that a shame, because it will make it difficult for her bright daughter to get a real education past elementary school. But other mothers with legally blind children got to her.

Lori Stayer Merrick, New York USA