Blog posts from our board member, Phil Hatlen, and guest bloggers, addressing issues related to blind and visually-impaired children.
What do I want to say to parents of blind and visually impaired infants?
First of all, I want to say to you that those of us who have not walked in your shoes have only the slightest idea of what it feels like, and what it is like, to be the parent of a blind child. It is, therefore, with much humbleness that I share with you the following thoughts:
• Love, cuddle, and completely enjoy your baby. He may not be what you expected and wanted, and you may still be grieving, or be in shock, but from the moment of birth your baby needs your body, your warmth, your love.
• Try to notice the wonderful attributes of your baby. It’s easy and natural to dwell on the disability, but your joy in parenthood will really start growing when you begin to discover the many wonderful things about her.
• Seek out professional help as soon as possible after diagnosis. Pediatricians, ophthalmologists, social workers, and generalists in early childhood are all valuable allies, but the one person you really, really need is an experienced expert in the effects of visual impairment on early growth and development.
• Maintain close physical contact with your blind baby. For example, a back- or front-pack can be far better than a buggy or stroller, because, while the surroundings may hold no interest for your child, the warmth, contours, and movement of your body will.
• Have the same developmental expectations for your baby as you would for any child, but know that your direct involvement in her development will be essential.
• If your baby is blind or has severe visual impairment, remember that incidental learning through observation will not occur. When my son Lucas was a baby, I observed him laying prone on his tummy in our living room. He pulled himself up so his head was raised, his arms straight, and moved his head as far as he could in both directions. As I watched him, it became clear that what he was doing was visually organizing his environment. How do blind babies do this? It is not difficult, but it must be taught. Your “expert” in visual impairment will help you learn how to do this.
• The blind child’s world is the length of her arm. This is essential and fundamental to remember as you begin to find ways to assist in your child’s development. Sounds and smells beyond arm’s reach cannot be identified by the blind child, so expansion of his world is up to you and the good advice and suggestions you receive.
• In order to creep, to crawl, to cruise, and to walk, there must be a reason for the blind child to move. Something must be beyond arm’s reach that he wants. This sound or smell must be associated with a past pleasant experience. An enjoyable toy that makes a distinct sound, mother’s voice that is out of reach, the smell of something good to eat - these are the experiences that motivate blind and visually impaired babies to walk.
• Be prepared for developmental differences between your child and a non-disabled child. Sometimes walking doesn’t occur until the baby is 12-15 months old or older. If other areas of motor development seem okay, don’t worry. Your baby is simply learning other things and postponing walking. Talk with your expert on visual impairments about differences in developmental patterns, how you might help, and whether you should be concerned.
• If your baby is likely be a braille reader, consider early introduction to braille as a system for pairing symbolic language with real objects. You may wish to put braille labels on every object in your home - the walls, the floor, the toilet bowl, the dresser, etc. When your baby encounters these strange dots, you don’t need to begin reading instruction. Just tell him that the jumble of dots represents the word “wall” (or whatever), and “wall” is the object that the word is attached to. It seems to me a shame that some braille readers don’t see their first word until formal school, while sighted infants and preschoolers are surrounded by print from the time they can remember.
• Teachers of visually impaired students have many stories to tell about blind and visually impaired children who were not ready to learn when they came to school because they lacked real, concrete experiences. These young children are lacking in experiential learning. What this means is that they arrived at school without the background of experiences with the real world that adds meaning to learning. Your baby and preschool child needs direct, physical experience with his environment in order to learn in a meaningful way. The story in the reading book about a brother and sister at the grocery store will have little or no meaning for the blind child who has not experienced “grocery store.” This experience has to happen in a grocery store, and must include verbal information and first-hand tactual experiences. Your baby and preschooler must have a comprehensive exposure to the world, and information for understanding that world, if school is to be successful.
Well, I could go on, but I think I’ll stop now. Babies are precious - they deserve the very best we can give them. They don’t know what they need - parents must know and offer the experiences, the love, and the caring required by a blind or visually impaired child. Parents won’t always know what to do - they need a competent, creative teacher of the visually impaired or early childhood caseworker who knows early childhood growth and development to help them. So you see, the parent/child/professional team must begin when the child is an infant. There are so many essential learning and developmental experiences required by the blind baby that this partnership must begin as soon after diagnosis as possible.
Parents: Don’t delay - find yourselves a qualified and creative expert in visual impairment right away!!
Teachers: Don’t delay - if you’re not feeling qualified to help parents through the critical growth period of birth to five, then find classes and readings that will prepare you for this crucial role.
Parents and Teachers - have fun with babies, and help babies to have fun with you and others!!