Versión Español de este artículo (Spanish Version)
By Gretchen Hester
Reprinted with permission from reSources, Volume 10, Number 5, Communication Issue, Summer 1999, Published by California Deaf-Blind Services
My three-year-old son, Bruno loves to be active. I try to involve him in many activities with his cousins - swimming, carving pumpkins at Halloween, visiting the Discovery Museum, and the petting zoo. Swimming is a favorite activity for Bruno because he enjoys more freedom of movement in the water. He enjoys touching objects, toys, and pets. He loves his English bull dogs! We use books that have scents, shiny objects, and different textures to "read" to him. He will attend to a light box to play with his toys. He loves to be rocked back and forth, and to swing in his swing. For his birthday, I had pony rides and he enjoyed being on a pony although he was very medicated because of a big seizure the previous day.
When Bruno was born, the doctors told me that he would not live and I should just take him home from the hospital and let him die. He just celebrated his third birthday! Bruno has multiple disabilities which include severe epilepsy, developmental delays, cerebral palsy, a temperature regulation problem, and is cortically deaf and blind because of global brain malformations. He has agenesis (absence) of the corpus callosum (band of white matter that connects both hemispheres of the brain). He also has optic nerve hypoplasia in both eyes (it is much more severe in the right eye as compared to the left) and suffers from nystagmus as well. Bruno's medical needs have always been extensive so he has nursing care. He has been on many drugs to control his seizures, but they haven't worked. Last year, he started the ketogenic diet and that worked for a few months. Last October, he had a vagal nerve implant and that had helped him healthwise - but he still has seizures. Recently, he was in a study with Dr. Bill Good at the University of California, San Francisco. Dr. Good found that Bruno's myoclonic seizures affected his vision for several minutes after the seizure.
I've learned how to interpret Bruno's communication by watching him carefully. When I was working at the University of California, San Francisco, I noticed that when we went outside, he would stop breathing, throw his arms back, and turn blue. I didn't know if this was a seizure. This happened several times and then after a hospitalization (attempting to determine the cause of the episodes) I figured out that wind was frightening him so much that he would stop breathing. There was a sort of a "wind tunnel" as we went out of the hospital building. Bruno is still afraid of the wind but is able to continue to breath. When we last went ice-skating, he was terribly scared when the wind hit his face while he was in his wheelchair on the ice. He much preferred attempting to skate with me holding him. This way, we were going at a slower speed and there was no wind, as well as he was more involved and could tell what was going on with sensory input of the ice skates on the ice. He is scared when he is not sure what is going on since he can't see or hear things that approach him, even wind.
Often people who don't know him have a difficult time understanding him. They are not sure why he does not look at or listen to them. It is difficult for them to comprehend the idea of him as a deaf-blind child. Sometimes people will touch him on his face. He doesn't like this, and I believe it is because of all the tubes he had as a baby in the hospital. California Deaf-Blind Services and Jeri Hart from the Blind Babies Foundation have helped me learn how to communicate with Bruno. I use specific touch cues in particular situations. When he is in the hospital, I tap his toes before an injection or blood test. This warns him that something unpleasant is about to happen. At the swimming pool, I touch his lips to signal that he is going underwater. Before eating, I tap his hand that is holding the spoon.
When he was a baby, I started with scents during everyday activities to help him understand what was coming up. I put rosemary in his bath to signal bath time, lavender on his pillow so that he would know it was time to sleep, and he felt and smelled bananas and pears at meals when he was going to eat them. Once he got the idea that certain scents were tied to these particular activities, I paired them with objects (a rubber ducky was used with the rosemary scent before going into the bath). I used other object cues like a leash to mean that we are going to walk his dogs. Because of his cerebral palsy it is difficult for Bruno to make signs but I have added a few signs to his object cues. I speak to him at the same time that I make a sign on his hand or help him make a sign. I'm learning signs and how to adapt them for him. By his behavior, I know that he understands the signs for STAND, SIT, WALK, EAT, DRINK, and MORE.
I use "identification cues" to help Bruno identify familiar people. He touches their ring, watch, or they touch him in a special way. For example, his grandmother kisses him on both cheeks to greet him. His aunt sings to him by placing her lips on his face. Because he can't see or hear me, he likes being physically close; so if he is alone, he yells to get my attention. Bruno has a little piano that he likes to play; he'll push on the same button over and over again to get me to come over to him and reset it.
I was told that he would never drink or hold a bottle by himself, but now he does. I was told that he would never eat by himself. He doesn't as yet, but he holds his spoon and he loves eating, so eventually he will.
Editor's note: I was fortunate to see Gretchen speak about Bruno through a wonderful distance education program from the California Deaf-Blind Project. She presented with Dr. Deborah Chen as part of a workshop on developing communication in children with deafblindness. I want to thank California Deaf-Blind Services and Dr. Chen for allowing us to reprint Gretchen's article and an additional article, "Learning to Communicate: Strategies for Developing Communication with Infants Whose Multiple Disabilities Include Visual Impairment and Hearing Loss" which appears on pages 17-24 of this edition of SEE/HEAR.