As I listened to Dr. Van Dijk's presentation and watched the accompanying videos I noted the frequent use of "calendar boxes" by his students who are deaf-blind. Listening to chitchat during the breaks, I heard many participants in the conference express interest in the use of calendar boxes as a communication tool. Calendar boxes help a person who is deaf-blind anticipate what activity is going to happen next by sequentially organizing object cues that represent the day's activities. Calendar boxes can be used at home and school, by families and teachers. Communicating with a child who is deaf-blind may seem highly technical and complex. The purpose of this article is to show you how easily you can get start. Gather together the objects that the child is using for communication. If you are just getting started with object communication it is important to select object cues very carefully. The object should be an item that will be as easy as possible for the child to associate with the activity, by sight, sound or touch. Consider how it feels, looks and sounds to do the activity from the child's perspective, not yours. Put on a blindfold and hold the object. What does it tell you?
If you need a cue to tell a child that she will be placed in her wheelchair, look at her when she is in her chair and observe where her hands typically rest. Does her face generally touch something? A piece of fabric or metal that feels the same will likely be a meaningful cue for the student. A dollhouse wheelchair, while a very concrete symbol for us, will not look or feel at all like her wheelchair to the student.
Some activities are not practical to represent with the most significant feature; for instance, using water to represent bath time. You may need to add an object to the routine to help you choose an object cue. Consider using a favorite bath toy or adding scented soap that the child can use during each bath. Keep in mind that your object cues may be lost, thrown in the trash or otherwise destroyed. Make sure you choose something you can easily replace! Try to chose objects that are small enough for a child to hold in one hand, but not so small that they are easily lost or swallowed.
When a child is using more than one object cue, calendar boxes will help to organize and sequence the day's activities. Even just 2 different objects can be organized to help the child know what is going to happen next. Dr. Van Dijk's students had wooden boxes with many compartments mounted to the wall. This style of box may work for some students but is not practical for all situations.
Plastic containers or shoeboxes that are glued in place or tied together will work just as well. Any containers that you have in the classroom or at home can be used. Consider the physical abilities and needs of your child when choosing materials. A child who uses materials forcefully might do well with sturdy plastic containers, while a child with limited range of motion may be able to grasp an object out of a very shallow container. Consider the color of the containers and choose a color to contrast with the object cues for students with some usable vision. Choose another container for a "finished box". This is where the child will place an object when the activity it represents is completed.
In a classroom the calendar boxes may be placed near the entrance to the classroom or in the area where the day's schedule is posted. Place the student's calendar box in a location where he can most readily use it. At home, families will need to determine a central location that is convenient and accessible to the child. In my house there is a shelf in the kitchen where phone messages, milk money and homework are kept. It is the place that everyone checks as they come and go from the house. Identifying that kind of place in a student's home may tell you where to place her calendar boxes. Infants and young children may need their calendar boxes on the floor or a low shelf where they can easily reach them.
There is no magical moment when you and your child are ready to begin. As soon as you have gathered the materials, leap right in. Guide the child to the boxes and assist him to reach in, touch, look at and examine the object. Mouthing it is fine, too, if this is not a behavior you are trying to stop. Give the child enough time to thoroughly examine the object. Tell him, with a few words or signs or both, what is about to happen. Take the object with you to the place or activity it represents. When the activity is completed, return to the calendar boxes and help the child place the object in the "finished box." Say or sign "finished" or "all done." Completing the cycle of getting out an object and then putting it in the "finished box" is really critical. Many children with deaf-blindness have no concept of the beginning or end of objects or activities. With limited sight and hearing, everything just appears, almost magically, and disappears the same way. Consistent use of calendar boxes assists children to anticipate what is going to happen next and to understand that events have a start and a finish. These are important concepts to develop; they provide the child with a wonderful sense of control over his environment. Of course, these techniques will not always work so easily in your home or classroom as I have described above. Your child may throw the objects, tear them or scream when you help him to reach into the box. You may need to choose more indestructible objects, or move more slowly in asking the child to hold or reach. You may need to choose objects that are not overstimulating to children with tactile defensiveness. Don't give up because it seems that you are doing all the work and the child is passively receiving your input. It may take many months or even years of consistently telling the child what is about to happen before you see a noticeable response. Think of it as "listening" time taking in what you are "saying." All children deserve to be told what is happening to them in a way that they can understand, even if they don't tell us anything back. Add more objects and boxes when the need arises and you feel that the child can handle more demands and input. It is better to have only a few objects that are used consistently than many that have no real meaning for the child.
You will know that the objects are gaining meaning by closely watching the child's behavior. A smile when feeling the object, a relaxing of muscle tone, a purposeful reach toward the box, a look toward the place or activity to be done, approaching the boxes and searching for the object-these are just a few of the possible behaviors that will tell you that a connection is being made.
Object communication and calendar boxes can be powerful communication tools for a child with deaf-blindness. They may also be a new and confusing method of communication for a teacher, parent or therapist. Don't hesitate to call California Deaf-Blind Services to request assistance to develop a communication system that is uniquely suited to your child.
About the same time that Dr. Jan van Dijk was starting his career as a medical doctor in the Netherlands working with children who were deaf and blind, my wife was giving birth to our second child (Heidi) at Memorial Hospital on the island of Maui. Immediately we knew that Heidi had problems but did not understand to what extent or how to deal with them. In retrospect I wish Dr. van Dijk had been there. We would have done things differently.
Thirty years later, as I was sitting in a room listening to the good doctor sharing his wisdom, I could not help but reflect on some of the little gems of wisdom he would share with the 300 attendees. As a parent who was constantly grasping for answers in raising a daughter who is deaf-blind (with other issues) I heard him say some things that really hit home. Let me share some of them.
The first gem: "You, as parents, are ultimately responsible for your child who is deaf-blind." There is no question about it - our children with special needs are a handful. Secretly most of us wish that we could take a magic pill and everything would be fine. But we know that is not going to happen. As parents we must take full responsibility for our child. We need to oversee what happens on a daily basis and plan for their future. No one else can do it. Along the way we shall probably meet a few professionals who seem to know what they are doing; but don't count on finding many who really understand a child with dual sensory impairments. My wife and I received some terrible advice from doctors who did not understand our kind of child. Early in the game we learned to "interview" doctors concerning their experience in working with a Heidi. We rejected many primarily because they were not willing to learn along with us.
A pearl: Mom! Dad! You must advocate for your child in a positive, creative fashion. Use the ideas of professionals to help the two of you formulate your action plan but don't delegate, or abdicate, your responsibility to anyone else.
Next gem: Dr. van Dijk directly and indirectly stressed the importance of obtaining the best for our children with dual sensory impairments. So many times society is willing to give our children only second (or lower) best. Most of the world has no idea how a child who is deaf-blind functions but is willing to make decisions based on that knowledge. We can't settle for second best. Our children have enough issues. Consequently, at times we need to be confrontational, demanding, assertive in expecting the best. For many, this is uncomfortable behavior but we parents must learn how to do it. Sometimes the best means that we have to move to a better school, city, state because what is around us isn't very good. We moved two times to obtain the best education for our Heidi. Once from Maui to Oahu and the second time from Hawaii to Santa Ana, California. Those moves paid big dividends.
A pearl: We must use the law (which we did not have 30 years ago) that says our children will have the best. Settle for nothing less.
Final gem: "Parents have a tremendous challenge." I suspect none of us need to be reminded about this. But notice that Dr. van Dijk said "challenge" not burden, handicap or any of those other negative words. Our Heidi was a challenge - lots of them. We had no idea what the future had in store for her or us. We did have a general idea what the future held for her younger and older sister. But Heidi was different! Instead of crawling she scooted on her back staring at bright lights. She made high pitched noises that would often start our basset howling. She loved to "play" in the middle of the night; especially during the full moon. She would "rock" on her bed for hours. Coming into puberty she started having grand mal seizures. On and on. In retrospect I must admit that as time went on either the challenges became less traumatic or we became better at meeting them. Whatever it was, thirty years later my wife and I can look back and say Heidi was a tremendous challenge but by working together with a multitude of professionals we did a heck of a job.
A pearl: Our children who are deaf-blind are a challenge, but there is an array of professionals, agencies, and support groups who can assist us as we encounter each new challenge. Use them. Dr. van Dijk dropped many more gems of wisdom but I selected these because they were so important to us as we raised our daughter with multiple handicaps. We hope that maybe they will give other parents encouragement to keep moving forward.