FamilyConnect

As always, communication is a huge hurdle when it comes to our blind son, Eddie. Even though his language has improved greatly over the years, he still struggles to get his message across. When he is overly upset, he simply can’t get his brain to talk to his mouth. His frustration escalates until he is screaming, crying, and absent-mindedly hurting himself or others.

For children with vision, they often rely on their sight to help them communicate. First, as we see in toddlers, they will point to what they want. They may not be able to say “cheerios,” but they can direct you to the box and point at it. They literally control us with their little finger.

Older children with delayed speech are often encouraged to use pictures to communicate. They are shown multiple images, which they can select from to make their needs or wants known. This is truly ingenious when working with a sighted child, but completely inaccessible to children like my son.

Therefore, we have adapted the picture model to accommodate him. Instead of pictures, we use objects. When we began, we would have whole objects representing certain needs. He could select one, and hand it to us. For example, a spoon meant “hungry.” When we were handed a spoon, we knew that he wanted to eat. Simple as that. Over time, we’ve progressed to our latest system.

We have moved from whole objects to parts of objects. In our kitchen, there is a black piece of foam-board. Velcro is attached to it and holds parts of objects on thin, wood circles. For example, there is part of a straw glued to a circle meaning, “water.” There is a cap off a milk carton meaning, “milk.” There is part of a spoon meaning, “snack” or “hungry.” There is also a piece of gum glued to one for “gum.” Along with a few others, these provide the most common choices Eddie makes.

Over the past few days, we’ve been implementing his “choice board” even more so. He has been very frustrated, and unable to communicate effectively verbally. Whenever he gets angry or overly upset, we simply say, “Make a choice.” He then gets up, walks over to his “choice board,” pulls off a “choice,” and returns it to us. We are able to still push for him to communicate with us, even when the words can’t be found.

The obvious downside of such a board is that it limits his choices. We have to forecast what his needs and wants might actually be. Therefore, we are limited to a couple of his favorite things, and the basics like bathroom, eating, and drinking. Due to the limitations, he was unable to tell us his latest problem.

My husband took him into the doctor yesterday for his annual “well-child” exam. After looking him over, the doctor asked if Eddie had been overly angry and frustrated lately. Of course, his dad replied, “yes.” The doc explained that it was likely due to the raging ear infection we didn’t even know existed. Whoops. We didn’t have a tactile symbol for “ear infection.” All I can say is that we’re not perfect, but we try really hard every day…well, almost every day.