June 16, 2009

Visual Evaluation

Today, Linda came to evaluate Bertrand's vision. In typical Bertrand fashion, he got so overworked that she'll be coming to finish the evaluation next Tuesday. However, just based on the testing that was completed, Bertrand will begin receiving services for the visually impaired.

Linda armed me with Utah Schools for the Deaf and Blind Parent Infant Program binder, a sensory quilt (made by volunteers) which Bertrand LOVES, and a book entitled In touch with your baby's development. I am about halfway through the book. Here is a passage.

The shock of hearing that your baby is blind or visually impaired is a feeling that lives long in the hearts and minds of parents who experience this news. Maybe you already had the suspicions that something is not quite right. Your baby is not making eye contact. He doesn't follow a dangling toy. His eyes move around in unusual ways. These observations may have led you or another family member to question your baby's vision.

Parents who have gone through such an experience describe a "numbing feeling". Mothers say that they just cried and cried and didn't want to get out of bed. Others hate to see pregnant women. Their dream of a normal baby is shattered. All those baby showers and gifts are meant for a baby with sight. This is not part of the plan. Looking to the future seems impossible. Comments from outsiders seem inconsiderate even though unintentional. How many times are you going to hear, "Oh, he's sleeping," before you scream back, "No, he is blind!" You don't want people to feel sorry for you. You just want to be normal, whatever that means. A mother recently shared that her doctor described their experience as the "new normal". That is, what will now be normal life for their family.

Perhaps your baby has delays in other areas of development as well, and then you find out your baby can't see. The feelings are overwhelming--like you are on a roller coaster ride. Your life is now occupied by new faces; you have so many appointments with doctors and professionals. You just want to talk to someone else who has been where you are now. Friends and family come by with their sighted babies and you cringe at the contrast between their baby and yours. They don't understand what you are feeling.

If this is your first baby, you are even more unprepared for such an event. You have endless questions. What is typical development? How will my baby learn without sight? Why did this happen? Can it be corrected? How much can my baby see? Am I seeing the best doctor there is? You begin looking for answers. Perhaps doctor shopping begins. Maybe another doctor can make this all go away. Better yet, you go to sleep hoping that when you wake up it will just be a bad dream. But, this isn't a dream, and that precious baby lying there is your baby and the love of your life. You want to have hope. Hope for a happy life for your child. Hope that you can make new dreams. Hope that your baby will be the best that he can be. Hope that you will see the world from a new perspective, through the eyes of your child.

1 comment :

  1. I'm glad that you found a good book. If you find any more, let me know. I'm interested in reading anything that would help me be a help to you.