Children with Visual Impairments: One Family's Odyssey

by Gregory H. Santamoor, Lighthouse International

Have you ever been at sea in a dense fog, when it seemed as if a tangible white darkness shut you in, and the great ship, tense and anxious, groped her way toward the shore with plummet and sounding-line, and you waited with beating heart for something to happen? I was like that ship before my education began, only I was without compass or sounding-line, and had no way of knowing how near the harbor was.
                    - Helen Keller, The Story of My Life

About two months after Joshua was born, Susan realized that, although he still smiled gleefully, her son did not look back at her when they played "silly face" games. His eyes often strayed to the sides and shook in a back and forth motion. She and her husband Jeff had noticed the eye shifting before; their pediatrician had said it was normal and that it would go away eventually. It didn't, however, go away. Although Susan moved toys in front of his face to get him to latch on to them, Joshua just didn't seem interested. Susan had the sinking feeling that something was wrong.

Finally, Susan and Jeff took their son to the pediatrician to ask why he was not responding visually. The news was not good. The pediatrician, who was sure she was on top of Joshua's medical progress, sheepishly recommended an ophthalmologist for a vision exam. After a visit to the eye doctor only three days later, the diagnosis was distressful. Joshua had a rare visual disorder affecting both of his optic nerves, and there were also signs of congenital glaucoma. Essentially, Joshua was blind and had been since birth.

While the words were well understood by Susan and Jeff, and although the doctor explained why the particular diagnoses were missed at Joshua's birth, they immediately were filled with disbelief. Their world was about to change: their little boy was not what they expected. Joshua didn't seem to mind; he was just happy to have his favorite rattle and the toy that made the funny noises at the slightest touch. But his parents embarked on a long journey of shock, grief, anger and blame before they eventually reached acceptance that Joshua was still Joshua - with his own unique personality.

Emotional Impact on the Family

When a baby is born blind or with impaired vision, the impact is usually hardest on the family. With a diagnosis few have heard of or understand, many people immediately feel pity, remorse or sadness for the infant. There can be feelings of denial, grief (at the loss of a "normal" child), and anger ("Why did this happen to my child?"). Often, because families do not quite understand the complexities of how to raise and rear a child with a visual impairment, they may even withdraw from the child.

So it went, at first, with Susan and Jeff. Once the family found out that Joshua was blind, some of the back-and-forth play ended since he was not looking back at them or smiling directly into their faces. Concerned about his seeming lack of interest in his toys, Susan and Jeff searched for new ones. When Susan tried to shove the toys into Joshua's hands, he responded only by grabbing at the bracelet on her arm. She grew frustrated in her attempts to entice him with plastic playthings.

What Susan didn't realize was that Joshua was responding to her face games, just without a visual response. And, while the toys seemed of little interest to him, he was completely fascinated with the shiny, clanking silver bracelet that dangled just out of his reach.

For, despite everything, Joshua continued to carry on like a baby. His parents' world might have changed, but his had not. He was not undergoing the myriad of emotions they were experiencing. They were beginning to treat him as the most fragile and delicate object; a distance was beginning to grow between him and his family. But Joshua in his own infant way continued to ask: "Hey, where did everyone go?"

Eye Doctors and Prognoses

Luckily, Susan and Jeff took action. They decided on an eye doctor who was highly recommended by the baby's pediatrician. Dr. Adams, a pediatric vision expert, gave them a few articles he had written about childhood blindness. They read everything and were impressed by his knowledge and experiences. They trusted Dr. Adams, as he seemed straightforward and was good when handling the baby.

During examinations, Dr. Adams used odd instruments to test Joshua's acuity and examined the shape of the eyes. He pulled out cards with black lines of varying widths and also enticed Joshua to turn to white cards with black dots on them. The ophthalmologist also used funny face cards to play hide-and-go-seek games with the baby. When he explained that Joshua was not totally blind and had some vision, Susan and Jeff were elated. He further suggested using flashlights and shiny objects while playing with Joshua. Hearing this, Susan recalled that Joshua tended to turn his head toward the window in his room.

NYC Early Intervention Services

Dr. Adams then suggested that the family speak to a social worker to discuss the possibility of Early Intervention. Early Intervention is a statewide program that requires the City to offer early intervention services to infants and toddlers with developmental disabilities or delays. Susan and Jeff were grateful to learn that there was another way to help their baby beyond subjecting him to a slew of medical appointments.

As it was explained to them by the social worker, children are evaluated first to find out if the blindness may be affecting their speech, play skills, movements and overall thinking skills. The Early Intervention programs offered in New York City can then provide the family with speech, occupational, and physical therapy. There are also family training, special instruction and vision services. Once the child is evaluated and a decision is made to give services to the child, he or she may get speech therapy and vision services for a specific number of times per week, usually in half-hour sessions.

The family was told that a doctor, social worker, parent or teacher can make a referral to Early Intervention when a child is at risk. Clearly, a visual diagnosis like Joshua's would merit the referral. Since the services are free of charge, how could it hurt? It was also emphasized to the couple that the parent must allow for this referral to happen, as the parent is the one in charge of all decisions. They were given the number for the New York City TOTLINE: 1(800)577-BABY (2229).

Joshua got into the Early Intervention system and was evaluated by a teacher, physical therapist and speech therapist. It was determined that, since he was almost totally blind, he would need services from a vision teacher. He was also authorized to receive physical therapy and speech therapy. Susan and Jeff found out that these services could be given at home or at school. Because they wanted Joshua to learn socialization skills, they pushed to get him group instruction at a facility. There are a handful of these schools in the City that offer half-day programs for infants and toddlers who are visually impaired; the family was given a choice based on where they lived in the City.

Lighthouse International

One program that Susan and Jeff might choose for Joshua is offered at the Lighthouse International Child Development Center. Early Intervention services are available for infants with visual impairments. Once children reach three years old, they can attend the Preschool. The Preschool experience at the Lighthouse is mostly integrated, meaning that its small classes are made up of a balance of children with visual impairments and without.

The Preschool aims to give children an age-appropriate and fun experience while challenging them to learn the alphabet, Braille, days of the week and colors. As in a public preschool, the teachers use curricula that are approved by the Department of Education Universal Pre-Kindergarten program, incorporating a variety of strategies that are helpful to children with visual impairments. The classrooms are specially adapted and it just so happens that these adaptations - the use of high color contrast and large print, activities involving textures and textile and sensory exploration, lots of structure and anticipated routines - are beneficial to all children in this age group.

Because the program is integrated, children like Joshua can play and learn alongside classmates who have full vision ability. This encourages social interactions that would not happen in another setting. Although no child is seen as "different," all of the children learn naturally to accommodate the differences that are inherent in all of us. Together they learn and experience the same things, although they might use different ways to reach the same goal.

Modern Day Annie Sullivans

The teachers of the classroom are very similar to the one Helen Keller herself had over a hundred years ago. Vision teachers help children with visual impairments to use any residual vision they have to move forward, reach, learn, play, talk and explore the world around them. Not only do they teach children to read and write in Braille, they help them both at school and at home to become independent. A vision teacher can help children as young as two years old to use a cane as a mobility device.

All too often, without the service and training from a vision teacher students who are legally blind tend to lag behind their peers. But with the assistance of a vision teacher, these children can learn to make the best of existing vision and to use other senses to explore and learn.

Today's teachers of the visually impaired are modern day Annie Sullivans - leading children like Joshua from the dense fog to shore.