Once, some years ago, I made up what I considered to be a book for blind children. Each page had a special feel - or, in some instances, a sound. There was a page made of sealskin, a page of lambskin, a page of aluminum foil that crackled when bent, a page of burlap, a page of sandpaper, a page of cotton cloth, a page of silk, and a few other pages that I have since forgotten. "How fascinating it will be for the blind children to finger these different textures," I thought, and I pictured to myself the children spending hours going over the sense-stimulating pages.
I gave the book to the children of the Pilot School for Multiply Handicapped Children in Washington, D. C., where my daughter was a teacher. I awaited the results of my undertaking. They were interesting and unexpected: the children, for the most part, passed quickly over all the pages I had so carefully selected except one - the sandpaper. They would hold this page next to their ears and scratch it over and over again with their fingernails, enjoying the grating sound thus created.
I realized then, more than ever before, that I did not sense the world of the blind child - a realization emphasized again and again as my knowledge of this handicap increased.
I am sure, from my own years of practice, that most of us pediatricians have had very little experience with blind children and little or no understanding of the world in which they live. I am also quite sure that most of us - on seeing a blind child sitting and constantly nodding his head, or rocking and rhythmically banging his head against the back of the bed or the wall, or shaking his hands endlessly, or continuously flicking objects close to his ear - would probably agree with many psychologists that the child was autistic. And we would probably be very much mistaken, for these activities are not at all unusual for the blind child who has normal mentality and normal potential for development.
Today we see very few children who are totally blind. A great many of us went through the tragic period of the epidemic of iatrogenic blindness - retrolental fibroplasia. Today the cause of such blindness has been almost completely eliminated, and infants blinded in that era are now for the most part adults in their late 20s.
Most of us, also, were practicing when rubella blindness was first discovered. But this cause, too, has been largely eliminated through the use of rubella vaccine.
At the present time the great number of so-called blind children have some sight, but their vision is markedly defective. Usually, pediatricians are the first to make an appraisal of the blind or partially blind child, and there are several important decisions to be made. They must determine, as well as they are able, the probable causes of the defects. Pediatricians have, for example, diagnosed in newborn infants such conditions as cataracts, retrolental fibroplasia, and congenital glaucomas.
Then they must attempt to give the parents the probable prognosis. This may or may not be possible, for in certain types of blindness, such as that due to rubella, there may be other defects, including mental retardation. But one thing a pediatrician should impress on the parents is that the visually handicapped child, though he or she may have special needs because of the handicap, is a child who shares with all other children the need for the feeling of being unconditionally loved and having a deep sense of belonging.
Pediatricians are often asked by parents of visually handicapped children to advise on school placement. This is a problem for which the pediatrician should seek consultation from experts in the field - much as one would advise consultation in any condition requiring that the authority have special training, special experience, and special expertise.
It is interesting to note that the approach to education of the blind child has changed markedly in the past 25 or 30 years.
Until the 1950s, most blind children were educated in residential programs. However, in the early part of the century three blind men - John B. Curtís, of the Chicago Public Schools, Dr. Roben B. Irwin, of the Cleveland Public Schools, and George F. Meyer, of the Minneapolis Public Schools - gave impetus to a movement to educate blind children in public schools in classes with sighted children. By 1950, many cities had already integrated, their blind and sighted children in their schools. The movement continued to grow, especially after the experience with retrolental fibroplasia, when many parents expressed the desire to have their blind children live at home while being educated.
And then, in 1975, Congress enacted the law, PL 94-142, mandating that all handicapped children have available to them a free appropriate public education in the "least restrictive environment." This present-day approach to the education of blind and visually impaired children is fully described in this issue of PEDIATRIC ANNALS by Rosemary O'Brien, Ph.D., Supervisor of Vision Services of the Montgomery County Public Schools in Maryland.
Today blindness is defined legally as a vision defect that cannot be corrected to better than 20/200 even with the use of glasses or only 20/70 in the better eye, with a restricted field of vision subtending an arc of 20 degrees.
In 1978 there were, according to the National Society to Prevent Blindness, 1,391,000 persons in the United States with severe visual impairment. These include the many thousands of severely visually handicapped children of school and preschool age. This issue of PEDIATRIC ANNALS has been planned as an effort to acquaint the pediatrician with current knowledge of the blind and visually handicapped child. Its guest editor is John F. O'Neill, M. D., Assistant Clinical Professor of Ophthalmology at the George Washington University School of Medicine in Washington, D.C.
Dr. O'Neill introduces the symposium with a general discussion of the visually handicapped child, outlining the scientific advances that have eliminated many of the causes of blindness that existed in the past. He points out, however, that many visual difficulties in children still exist. And he emphasizes the importance of the pediatrician in early identification and referral of vision-threatening conditions since early lack of form vision may cause permanent vision loss. Dr. O'Neill further mentions new advances in pediatrie ophthalmic surgery that have aided greatly in achieving better vision for children, especially in the treatment of cataracts and glaucomas.
Following Dr. O'Neills introductory article, George R. Beauchamp, M. D. of the Children's Hospital National Medical Center in Washington, D. C., presents a discussion, "Causes of Visual Impairment in Children." He carefully describes the numerous causes of visual impairment and considers them under four categories - opacities of the media, refractive errors, neuroretinal defects, and effects of trauma. This is an excellent review of a many-faceted subject.
The following article, "Cataracts in Infants and Children," was written by Dr. O'Neill. He points out that cataracts are the most important single cause of visual impairment in children. The many causes of cataracts are listed, and the important characteristics of pediatrie cataracts are discussed. Hereditary and nonhereditary cataracts are also presented, with their specific etiologies. Treatment is described, including new methods of ophthalmic surgery.
"Medical Management of the Child with Subnormal Vision" is the title of the next article, which was contributed by Andrea Cibis Tongue, M. D., Clinical Associate Professor of Ophthalmology at the University of Oregon Health Sciences Center, in Portland. In this excellent paper Dr. Tongue not only considers the medical and optical treatment of the child but also stresses the emotional needs and development of the blind or visually impaired infant, youngster, and adolescent. Dr. Tongue emphasizes that the physician must also give equal importance to the emotional needs of the parents of these children. Parents, she states, should be told just how much a child can really see - letters, faces, toys, etc. - rather than hearing such terms as "legally blind" or "lower than 20/200 vision." Among the numerous important suggestions made to pediatricians and parents as well is the great advantage of prescribing visual aids for children before they go to school . They are much less self-conscious at that age and more willing to adapt than during their later school years. Dr. Tongue also impresses one with the extreme importance of correcting cosmetic defects early whenever possible to limit the endless questions, peer ridicule, and even cruelty the child will otherwise encounter at school. The child will need assistance from both teacher and parents in dealing with these problems. This is a very valuable anide, one that should be read by all pediatricians and filed so that it can be referred to when one is called upon to treat a visually handicapped child.
The final paper, to which I referred earlier, is Dr. O'Brien's contribution, "Education of the Blind or Visually Impaired Child." This clarifies what the optimum approach should be in the education of blind and visually handicapped children from infancy on throughout their school years. It is evident, as one reads her article, that the pediatrician should not by himself attempt to direct the education of such children without the assistance of a trained and highly qualified educator specializing in this field.
Public Law 94-142, the Education for All Handicapped Children Act, is carefully described in this article. And a very well-organized program for visually impaired children, which is in line with the act and has been established in Montgomery County, Md., public schools, is described. This program starts during the infancy of the visually impaired, with an individualized education plan provided for each child. All pediatricians should read this excellent paper; it not only presents a model of a finely organized approach to the education of visually handicapped children but will impress on physicians the need for them to work hand in hand with educators who are highly qualified in this field.