Future Reflections Winter/Spring 1991
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by Susan Baker
Editor's Note: I first met the Baker family about two or three years ago. Susan and Howard had brought Jennifer, along with their son Sheldon, to a state convention of the National Federation of the Blind of Maryland. Jennifer has a multitude of disabilities. She has a cleft lip and palate with an accompanying speech defect; she is deaf in one ear, she has limited use of her arms (she cannot extend them out for full use), she has cerebral palsy and uses a wheelchair for mobility, she has epilepsy, she has had kidney failure which led to numerous strokes which in turn led to many, many broken bones, she is borderline mentally retarded, and she is blind. But, far more important than all that, Jennifer is a delightful, spunky individual and an avid, accomplished Braille reader who has twice won awards in the national "Braille Readers are Leader" contest. How can this be? The conventional wisdom in our country today is that a mentally retarded and otherwise physically disabled blind child is incapable of doing much of anything—much less learning to read Braille! However, Jennifer had a mother and a father who refused to listen to conventional wisdom. They took their clues about their daughter's potential from a real expert—Jennifer herself. Here is the story as based on an interview and a speech given by Susan Baker at a Baltimore seminar sponsored last Spring by the Parents of Blind Children Division of the National Federation of the Blind of Maryland:
I'm going to start by saying I'm a terrible extemporaneous speaker. I've written everything down so that I wouldn't make a mess of it, so bear with me, please.
The birth of a blind multiply handicapped child can be devastating, particularly if you find out the news piecemeal. For example, you learn early on that your child is blind. A little while later you find out that maybe there are hearing problems, too. A little while later you notice that maybe your child's arms and legs are weaker than the other kids you see around you. On and on the news goes. And each particular problem is making everything more complicated. The new problems compound the old and tear up your life even further. But, your child is still your child and needs all the love and nurturing you can give him or her.
However much you love your child you should never smother that child or do for the child what the child can do for herself. If you do, your child will never reach his or her full potential—whatever that may be. You may take your child to doctor after doctor hoping for a cure—an answer—or even to have the decision made for you. You may be told yes, your child is blind. Yes, your child is retarded. Your child will never be able to do anything or amount to anything. But doctors aren't always right. You as a parent know your child better than any doctor who may see that child once, twice, even three times. It is you who must ultimately look for the clues that will help you to help your child reach his or her full potential.
For example, years ago when our daughter was born we went to a neurologist who told us that our daughter was not only blind (which we knew), but severely retarded. Jennifer, as an infant, had a very unusual fear, as a blind person, of strange people, objects, and toys. Therefore, she never did what was expected of her in situations that were strange to her. She would scream and refuse to cooperate. When we tried to explain that our daughter understood and did much more than what the doctor could see because of her fear, he treated us like we were imbeciles imagining the impossible instead of people who knew the child and saw her on a daily basis. He, of course, was terribly wrong in his judgment. I'm telling you this to show you that you can look for clues. But if you love your child don't wish so hopefully that you see things that really aren't there. You must really be able to see the clues.
As I stated before, it is very important not to smother your child. Treat him or her as much like his or her normal siblings as possible. It's okay to yell and admonish the child for doing something wrong just as you would do to a normal sibling. It is also very important to seek outside help for your child so that he or she will be able to accomplish different goals. It is never too early. An itinerant teacher from vision services in Montgomery County Public Schools started working with us and our daughter when she was nine months old.
It is also very important to send your child out to school as soon as possible. There are many programs for multiply handicapped children. Some start when the child is eighteen months to two years of age. This is important for several reasons. Sometimes children can learn better in an environment that is not so emotionally charged. The second reason, and this is a very important reason, too, is that you as a parent need time away from your handicapped child for your own mental health.
As a child reaches school age you are invited to attend an IEP. An Individualized Education Program is designed specifically for your child's needs, or so you are told. If you do not like the arrangement of the program, you do have the right to try and have it changed, but this is not always easy to accomplish. For example, our daughter was not scheduled to learn Braille because they did not think she was capable of it. I had to fight them to get the IEP changed to include pre-Braille learning goals for her. As a result, Jen was put in the class with lower functioning students because the teacher in there was the district's Braille instructor.
It took this instructor one school year to teach our daughter one half of the Braille alphabet. She said that Jen had been just too sick that year and she just didn't feel up to doing it somedays or that the other children needed her too much and she could not take time away from them to work with Jennifer. That summer, as sick as Jennifer was, I taught her the rest of the Braille alphabet. By the time she was ready to go into a graded school program she knew the entire Braille alphabet and was ready to learn to read. Last year Jennifer won the national championship for her division in the "Braille Readers Are Leaders" contest sponsored annually by the National Federation of the Blind. This was the child who wasn't ever going to be able to accomplish anything.
Jennifer was late when she started school. She was ten when she entered first grade. She had not been in the graded program because they did not think she was capable of doing it. Again, I had to fight to have her placed into a graded program in a regular public school. She's in OH (orthopedically handicapped) classes right now (she is orthopedically handicapped as well as blind). She is the only blind child in her school.
Next month Jennifer will graduate from sixth grade with all of her other normal and handicapped classmates. She will go on to seventh grade this fall. As a matter of fact, Jennifer has been mainstreamed—that is put into regular classes with the regular kids—in science and social studies for the past three and one half years. She has maintained a straight A average. (Her grades are based on her functioning level. She functions at about grade level in Social Studies and Science, about grade four or five in reading, and about grade two or three in math.) As she reads and her world experience broadens, her IQ goes up. When we first had her tested we were told she was moderately retarded. On the next test she was mildly retarded. On the last test given about two years ago she tested out at the borderline retarded level.
This did not come easily. We had to fight for her and with her to help her continue to grow and develop emotionally and educationally as much as she is able. We are very proud of her accomplishments, especially considering all the obstacles both physical and psychological that she has had to surmount.
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