Future Reflections Winter/Spring, Vol. 14 No. 1
Editor's Note: Linda Zani Thomas is a member of the New Jersey division of the National Organization of Parents of Blind Children, and the president of the Little Angel Health Network, a medical information service for parents. Linda also reports that she is the mother of five-and-one-half year-old Marisa, a happy, visually impaired, multiply handicapped child.
There probably isn't a parent around who doesn't pay attention to where his or her child falls on the development charts. For the parents of children with multiple handicaps, those charts can give you nightmares. And as your child begins to slip farther and farther behind other kids his age you begin to wonder: Which delays are due to blindness? Which may be signals of other problems? How can I help? Am I doing enough?
First of all, here is some good advice that has served me well:
1. If your child seems intelligent to you, you're probably right! No matter what the experts say, no one knows your child better than you.
2. A visual impairment alone is extremely challenging. Add on other handicaps such as cerebral palsy and cognitive dysfunction, and your child's got a real challenge on his hands. Relax. Delays are inevitable, but development will occur.
3. You can't pull a flower out of the ground. Like your child, a flower blooms when it's good and ready. All you can do is nurture it and surround it with the best possible environment for growth. The rest is up to him or her.
4. Accept the fact that your child may take a different path to development. The sooner you accept the challenges children face, the sooner you will be able to help them make the most of what they've got.
The first place to start is to objectively observe your child's daily routine. Start by keeping a diary of your child's typical day. Jot down the times and duration of all his activities. Write down your child's actions and reactions. What makes him happy? Sad? Curious?
Remember: Repetitive motions may not be random! Watch for the rhythm of movements and gestures.
Write down or record all sounds. Pay attention to their tone, melody, rhythm, and intonation. Remember, crying is the earliest form of communication. Be sure to listen for different types of cries, i.e. scared, hurt, bored, or angry.
Next, have a friend or other family member write down their observations for a whole day on their own, then compare notes. You'll be amazed at how purposeful your child's behavior really is!