FamilyConnect

By Carla A. Brooks

As a parent, you have hopes and dreams for your child who is blind or visually impaired. The hope of most parents is that their child will be healthy and happy and continue to grow and thrive, learning the skills that will prepare him or her for an independent life as an adult. And as a parent of a child with limited vision, you know there will be times when you have questions, and you are not sure what to do. It is a common saying that a baby doesn’t come with a handbook. However, there is extensive information to read about child development and how to support your visually impaired child’s learning. You will have expectations of next steps and, hopefully, your child will have a team of “experts” to help guide you along the way. The most important expert on that team is you! You are the expert because you know your child—and your child’s behavior—better than anyone else.

Observing Skills Development

As a parent, you began observing your child’s behavior from the moment he was born. You touched his hair or sweet bald head and counted his fingers and toes—just to be sure that they were all there. Then, as you cuddled him, you might have reached out and touched his little hand and watched him grasp your finger. This was one of the first behaviors you observed in your newborn. As you watched your baby, you thought about his needs. Was he hungry, cold, or wet? What could you do to help calm him? As the first days and then months passed, you observed changes in your child’s behavior. He couldn’t tell you what was needed, but his behavior gave you the clues you needed to take care of him.

Your skills as the “parent expert” grew by watching your child develop new skills and adapt to his world with limited vision. As you noticed each new skill emerge, there was probably an announcement and a celebration!

• “He lifted his head up!” “He rolled over!”
• “She turned her ear to my voice!”
• “He cooed!” “He babbled!” “He said his first word!”
• “She smiled!” “She shared a toy in the sandbox.” “She patted her sister when she was crying.”

Missing or Delayed Skills in Children with Visual Impairments

All of the new skills you observed were behaviors—skill behaviors. As you also learned what to expect next, you might have noticed some missing or delayed skills. You learned many developmental milestones occur later in children with visual impairments, likely due to decreased motivation to move without sight and due to a lack of learning through observation (incidental learning). If you were worried, it is likely that you shared your observations with family, friends, his pediatrician, or other professionals on your team.

• “Why isn’t she paying attention to me when I talk to her?”
• “Why won’t he eat solid foods? How can we help?”
• “Why hasn’t he started talking? He babbles but no words except ‘mama’.”
• “Why can’t she sit up by herself?”
• “Why isn’t she crawling? Is this normal?”

With a renewed focus on teaching in a way visually impaired children learn, possibly using new techniques such as hand-over-hand or hand-under-hand, receiving early intervention services, and intentionally helping your child who has a visual impairment develop good motor skills, your child could begin to move forward to the next steps. Small steps were celebrated! Your “expert” observation of his delayed or different skills helped to make a difference in his development.

Difficult but Expected Behaviors in Children with Visual Impairments

As your child moves into the toddler years, you might observe new behaviors, but these do not fit the description of developing skills. Whatever they are, they are becoming a problem! At first, the behaviors might not seem too important and, in fact, some of them might be noticed for a short time and then disappear. It seems that relatives, neighbors, other parents, and the daycare staff are not surprised by these new “problem” behaviors, and you are likely to hear these comments.

•  “Oh, it’s just the ‘terrible twos’.”
• “He’ll outgrow it.”
• “She’s just trying to be independent.”
• “She just enjoys playing alone.”
• “She’s protective of her belongings.”

“Problem behaviors” might be familiar or expected, but that doesn’t make them any less frustrating nor cause you to worry less. Behaviors like pushing, throwing, grabbing, yelling, or even biting might be observed at daycare or at home. You might ask, “Where did this behavior come from? He was such an easy baby!” It turns out that the reason for the sudden appearance of these behaviors is that they are clearly linked to developmental changes. As a toddler, the push for independence and the frustration of wanting to “do it myself” and experiencing “big” emotions that seem to change in just moments often result in “problem” behaviors. You might have experience with toddlers and have some strategies that work, or you may seek help from your team to learn some of the best ways to respond to your child when these behaviors occur. Some days it will be hard to “celebrate” this stage of growing up, but you are the expert. You try to let your toddler know that you understand that it’s hard to be two—or three or four—and you want to help them get through it! And, at the end of the day, you probably are thinking that it may be just as difficult to be a parent of a toddler!

What about “repetitive behaviors?” You might have observed some other behaviors that are not unusual in children with vision impairments. She might “poke” or press on her eyes, rock her body, shake her head, flap her hands, or gaze at lights. These repetitive behaviors have been described as stereotypical behaviors or mannerisms and are likely self-stimulatory. As with other behaviors, it is important to understand why they are occurring and what to do about them.

Challenging Behaviors in Children with Visual Impairments

As the “parent expert,” you expect changes in development and changes in behavior. You learn to help your child manage the behaviors related to new skills and development. Sometimes, however, a parent may observe behaviors that are unexpected, confusing, and quite concerning. A word that might describe these different behaviors is “challenging.” To use a metaphor, this is a whole new ballgame.

With challenging behaviors, there isn’t necessarily a clear link to developmental skills, though delays may play a part. These behaviors may be similar to the problem behaviors, but most are very different. The effect of the challenging behavior is often described as follows:

• Interferes with learning
• Disrupts daily life—at home and in the community
• Sometimes causes harm to others or himself
• Sometimes causes damage to objects or belongings
• Causes significant stress in your child’s life as well as yours and your family’s lives

Your understanding of your child’s development as a young child with visual impairment or blindness didn’t prepare you for this. Strategies you’ve used before are not working. Not only might you share your observations with family, a close friend, or the pediatrician, it is likely that your child’s teacher, therapists, or specialists will report their observations and concerns to you.

You are the “parent expert,” but now you are challenged to become the “behavior expert.” Remember, you know your child. You are the expert. But you may not know the answers. You will need help and support. Now, you will need to have others observe, describe, and explore possible reasons for the behaviors. Your goals will be to find ways to reduce the occurrence of the behaviors and find appropriate replacements for the behaviors. A new phrase will become familiar as you seek answers: All behavior is communication. And you will become the expert on your child again and help others to understand what he is trying to tell you.