Future Reflections Spring 1992, Vol. 11 No. 2
COMING TO GRIPS WITH BLINDNESS: A Mother Talks To Medical Professionals
by Loretta White
Editor's Note: Loretta White is the capable and energetic president of Maryland's NFB Parents of Blind Children Division. Her leadership and organizational ability is giving the division new zest and sparkle. This past Fall she and I, as representatives of the NFB/MD, were invited to conduct an in-service training session for nurses who worked with children and babies at the internationally known Wilmer Eye Institute at Johns Hopkins. This article is a somewhat edited version of the talk she gave at that in-service meeting. Loretta has since been invited to speak at the 9th Annual Symposium for Ophtalmoligcal Nurses being held in Baltimore this Spring.
My name is Loretta White and I live in Anne Arundel County with my husband and four children. Their ages are 16, 6, almost 5, and almost 3. I am also a licensed daycare provider, so most of my time is spent with and around children.
My daughter Niki will be five in November. Niki has been totally blind since birth. It's most likely due to retinopathy of prematurity, but since she was adopted from India, we don't know for sure. Her prenatal history is unknown, and the post-natal is sketchy at best. She also has some neurological problems that include a seizure disorder.
I'm here today to talk to you about Niki and our experiences. Hopefully I can help you better understand how to deal with a parent who has a blind child. And if you have any questions you've never had the opportunity to ask parents, or felt comfortable asking, please feel free to ask me.
I have done a lot of reading and talking to other parents of blind children. I find that the problems and difficulties and things that we have had a hard time coming to grips with are pretty much the same. And I have also learned that the sooner we, as parents, can pull ourselves together and start constructively dealing with our children's blindness, the better off our child will be. Early intervention is crucial; and the earlier the better.
The first thing we parents face is being told our child has a vision problem. We may have suspected it or even known it; but being told by the medical professionals seals it. And that moment, for better or for worse, will be permanently etched into the parents brain.
In our case, Niki came home from India when she was five months old. We took her to the pediatrician for a check up a couple of days after we got her. He told us that her eyes didn't look quite right, so he wanted us to have her checked by an ophthalmologist. The ophthalmologist he sent us to didn't do children, so all he did was take a quick look and tell yes that, yes, she has cataracts, and then referred us to a pediatric ophthalmologist in Harrisburg (at that time we were living in Pennsylvania). So I took Niki to the appointment by myself while my husband watched the other children. I was expecting to have her seen and then scheduled for cataract surgery. I spent the entire day there.
The doctor had a wonderful reputation, but I quickly found out in the waiting room that he had the bedside manner of Attila the Hun. So I was pretty nervous to begin with. Once the technicians had examined her eyes, and did their tests with the drops, and did the sonograms and what not, the doctor came in and quickly looked at her eyes. Then, with the same demeanor one might use to comment on the weather, he told me that my daughter's blindness was total and permanent. I'm sure he must have read the look on my face and realized that I had not known. And then he added, "Well, it's not that bad. It's like a Hershey bar. If you've never eaten chocolate before, you wouldn't miss it because you can't miss what you never had." Then, after a couple of minutes of very uncomfortable silence, he gave me the name of a doctor who might try some heroic surgery; wished me luck; and left the room. I never saw this doctor again.
Somehow I collected myself and my baby and made the hour and a half drive back to my home. It took me a long time to forgive his brutal honesty; but I will never forget it. I would have really appreciated some compassion then. Also, I did not appreciate the belittling of my child's condition. Things could always be worse, but so what? Right now they feel awful, and any parent who just been dealt such a blow is entitled to their pain.
As I was preparing for today, I asked myself what would have made that moment easier? First, I would ask you--the medical professionals--to find out how much the parent knows about their child's vision problem. Explain the tests and procedures and results in terms they can understand. Often we are told about the tests in medical jargon. In the beginning we may not know enough of this medical jargon to know whether we have questions or not. Also, whenever possible, tell both parents together so they will have each other to lean on. Use some compassion and respect with the words you choose. I read about a survey that was done to find out which medical problems we fear the most. Going blind was third. We only considered AIDS and cancer to be more devastating.
Some parents may need some quite time alone to collect themselves before leaving. Be sensitive to that; but please don't let them get away without referrals. Have literature available, at least from the NFB as an anchor to help them get their bearings and figure out what is next. They don't have to think about it or look at it at that moment, but they will need it soon.
There are a lot of emotions brewing at that moment. We might be angry; and that anger may be directed at you simply because you are the bearer of the bad news, or because you cannot fix it or make it go away. Or we may deny the problem. We may think that you've made a mistake, our child can't be blind. And we may go from doctor to doctor trying to find someone who will tell us this is not true, or that it will pass, or that some heroic surgery will fix it. We desperately want that magical cure which will restore our child's sight.
In our case, we went through the anger at the doctors and also at the adoption agency who had placed her. From what we were later told, anyone who examined her should have seen the detached retina and scare tissue mass. And yet we had paperwork that said she had an opthalmalogic evaluation and that her eyes were in good condition. To have known probably wouldn't have changed our minds about her, but we certainly could have been prepared and avoided the shock.
We also tried the heroic surgery. We took her to a doctor inTennessee who had had some success at reattaching retinas. We put ourselves in debt mustering up the finances to make three trips to Tennessee; two for surgeries and one for a check up. We did all this knowing initially that her chances of regaining any usable sight were less than ten percent. At that time we were just so frightened of blindness we were willing to try almost anything.
After, or maybe along with, the anger and denial, most of us will then go through a grieving process. It is as if our child had actually died. We have lost that perfect child we had planned for and hoped for and longed for; and in a sense, what we feel we have left is a broken child. Our lives are permanently impacted and forever changed. Not only our lives as parents, but our other children, and to a lesser degree, the extended family. Things will never be the same again.
Some parents become angry at each other; one wanting to blame the other for being responsible for the child's blindness, or for not caring enough, or for caring too much. Sometimes we parents may feel sorry; sorry for ourselves because we have this tremendous burden and sorry for our child because she has to endure it. Sometimes it's hard to get past that feeling of "My poor, poor baby." But for our child's sake, we must.
Hopefully these stages won't last too long, and parents won't get stuck in any of them. But these are feelings we have, and we need to deal with them so we can move on and constructively meet our child's needs. And that may leave us feeling, "Oh my gosh, what now?" This is because we are now forced to deal not only with our own child, but with our feelings toward blindness in general.
Before Niki came into my life, I had virtually no experience with blindness. The only blind person I had every known was Tammy who lived across the street from my family for a short while when I was six. I can still see this eight-year-old girl in my mind. All she ever did was sit and rock, sometimes poking at her eyes. Her speech consisted mostly of repetitions of what she had just heard. She never played with the other kids, or even went to school. She just sat and rocked. As you can imagine, that memory haunted me for a while after we found out Niki was blind.
If the only experience you've had with blindness is seeing a man begging on a city street; you're hardly going to feel excited about your child's future. And if the parent doesn't have a positive image of blindness, how can the child hope to develop a positive self-image?
As we begin to deal with blindness, we parents will be full of questions. We wonder what children with little or no sight are really like. Do they live in a world of darkness? Do they grow and develop like other children? Where do they go to school? Do blind people ever get married? How do they earn a living? Can they be happy? Can they live independently? What will happen to my child when I die?
We may feel overwhelmed when we think of the long years ahead in which we will have to cope with what seems to be an insurmountable number of problems involved in raising a visually impaired child. But the sooner we get to work; the better off we are and the better off our children will be. So we need for you, the professionals, to get us steered in a positive direction from the very beginning. We need to know--and most parents do not—that there is an infants and toddlers program offered through the school system in Maryland at no charge. We need to know how and where to look for services for our child.
When we found out Niki was blind, we were given a diagnosis and left on our own. Perhaps referrals were made, but we never heard from anyone. So I began to look on my own. I got a copy of Reach Out and Teach, probably at the library, and found a list of sources for information on blindness; probably 50 or more. I made a form letter requesting information and sent it to every one. For the next few months I got back all kinds of letters, pamphlets, and books. These were really helpful and I learned a lot from them. Then one day I got a phone call from Barbara Cheadle from the National Federation of the Blind. This was a turning point for me and for my daughter, Niki.
Through the Federation I have met successful blind individuals from all walks of life and from all over the country. By observing and interacting with these people, I have been able to revise my perceptions of blindness. Reading about it in a book will teach you here, in your head. But by living it, you learn it here in your heart. Children learn what they live. I want my child to know in her heart that she can be successful and independent because she has grown up watching successful and independent blind adults around her. Through education and interaction with the Federation, Niki can even take this for granted and think of her blindness as a mere nuisance, many other Federationist now do.
As Niki's parent, the Federation has been my source of information through literature; interaction with blind people; and very importantly, networking with other parents of blind children. Sharing what does and does not work has saved me lots of valuable time and energy.
The Federation has also been there to advocate for Niki at school. This is by means a small task. It has been my experience that a child is special education can get all the services and benefits entitled by law provided the parent can find out what they are and if they fight tooth and nail for them.
One last thing that I would ask is that, regardless of your perceptions of how or what we are doing, you always give us your encouragement. You see our child only from time to time. Teachers and schools may change. Friends may come and go. Three years from now you may not even remember our child's name. But we—the parents--will still be there working for and with our child. A pat on the back or a "atta girl" can go a long way.
And what about the kids themselves? How do we ask you to deal with them? Although our daughter is multiply handicapped, she is still very much the active, busy, noisy, drive-Mom-crazy preschooler. Niki can identify each of her doctors and their offices. Her pediatrician has the office with steps by the window full of toys. When she visits her neurologist, she goes up the elevator and gets to play with a bead toy while she waits. Her dentist has a chair that lies down like a couch. And so on.
Most of the time going to the doctor is o.k. for Niki because the people she sees have seen her over a long period of time and have learned and few do's and don'ts that make everybody more comfortable. First, always identify yourself when you come into the child's presence, and let her know when you are leaving. When someone comes into the room that Niki does not recognize, she asks over and over "Who is it?" until she finds out. Doctors and nurses who see Niki often have learned to talk directly to her whenever possible. "Niki, do you want a toy?" rather than asking me, "Do you think she'd like something to play with?" It also helps to let the child explore the environment as much as is safely possible, and to use a lot of descriptive language that the child can understand. We may be embarrassed to let our child crawl all over and under anything and everything, but this is how she learns. Your permission lets us know you understand.
Also, tell the child what you are going to do to them before you do it. And be as honest as you can. If it's going to hurt, say so. A child who can see knows what to expect when he sees the needle or the eye drops, regardless of what he's told. We want our kids to trust us, so we have to be honest with them.
The last thing I would suggest is please do not presume that a child needs help. Blind children are just like sighted children, they want to do it themselves! Wait until she asks for help or demonstrates a need before you offer help. You wouldn't presume to help a sighted six- or seven-year-old in the bathroom; so you probably wouldn't help a blind child that age either. If in doubt, ask.
And please remember to use the National Federation of the Blind as a resource for yourselves--the medical professionals—and for the parents whose blind children are your patients. We are here to help.