Building Healthy Families When a Baby Is Blind or Visually Impaired
The arrival of a new baby is a major family event that affects everyone—you especially, but also your baby’s siblings, grandparents, uncles, aunts, and cousins. They are all going to be affected in one way or another by your child’s visual impairment.
Your Spouse or Partner
You and your spouse may have a multitude of feelings that affect you deeply. If you can be supportive of one another, focus on the love you share as a family and recognize the strength you can gain from that; you may find it easier to cope with conflicting feelings that can interfere with your ability to think and act constructively. Try to set aside time regularly for yourselves, individually, and as a couple. Keep doing the things you enjoyed doing alone and those you enjoyed doing together even if you can’t do them as often or as easily.
Give yourselves time—weeks, months, and longer, if necessary. It takes time to adjust to any new situation and to learn ways of dealing well with your circumstances and your feelings. Life is an ongoing process, a series of transitions, and you’re in transition now. It may be helpful to remember just that.
Know that you are not alone. Connect with others who share similar experiences by attending a conference or workshop for parents of children with visual impairments, joining a National Association of Children with Visual Impairments (NAPVI) alliance, or participating in a NAPVI tele-support group.
But if you can’t shake the feeling of being overwhelmed by immediate concerns and anxiety about the future, you may want to consider seeking counseling or other external support.
Your Other Children
If you have other children, the fact that their baby brother or sister is visually impaired may have a strong impact on them. Depending on how old they are, their reactions will vary. As they get older, they’ll understand more, need more information, and may want to help their little brother or sister. At times, they may also be jealous of the extra time you spend with your visually impaired child. They’re going to want—and deserve—your time and attention too. Realistically, your visually impaired child is going to require more of your time, attention, and energy, but you don’t want to lose sight of your other children’s needs.
Grief and Other Feelings
Recognize that brothers and sisters—and everyone in the family—may grieve for the “typical” baby they anticipated. At times, they may be angry, depressed, resentful, jealous, or in denial about their brother’s visual impairment. Those feelings are normal. After all, you probably have them too. But if you find that your older child’s behavior has changed in ways that worry you—that her school work has suffered; that he’s dropped out of his weekly softball game; that she’s stopped going to the mall with friends—consider seeking professional help.
You can’t expect a big sister to be “on duty” all the time to help her visually impaired brother. While it’s a good idea to involve her in his care sometimes, that shouldn’t interfere with her own childhood fun. You might ask her to pick one meal a day to help him with his eating skills or ask your son to help his little sister learn to play with her toys from time to time.
Your other children need a fair share of your time. Try scheduling outings with them to do things they especially enjoy. Have a “movie date” with your son every couple of weeks and leave the choice to him. Go to your daughter’s soccer game as often as you can and have a special treat together on the way home.
Depending on their ages, keep your other children up to date on what’s going on with their visually impaired sibling—whether it’s a new medical procedure or the decision about which preschool she’ll go to when she’s three. While you don’t want to burden them with details, share as much information as you think is appropriate about what’s happening or may happen soon so that they’re not taken by surprise or left to worry about the unknown.
If your baby gets early intervention services and your other children are toddlers or preschoolers, they may be jealous when people come to your house with what they think are great toys and they don’t get to play with them. Talk to the professionals who visit about ways they can involve your other children during their home visits. If you take your child to a center-based program, ask the professionals there for ways to get your other children involved.
Your older child may feel that he’s the only one in the world with a visually impaired sister. If you’re in a parents group or an early intervention program, you’ll meet people who can probably put you, and him, in touch with other kids in a similar situation so that they can compare experiences and learn from one another.
The relationship between grandparents and grandchildren is often very special. But it may be hard for your parents to know how to behave with a visually impaired grandchild. Like brothers and sisters, grandparents will grieve for the “typical” grandchild they expected. They’ll probably need your help to understand the importance of treating your little girl the same as their other grandkids—that she needs their love and support; will learn to do the things other children do, although differently; and is an important part of the family.
If you and your family usually do things together, such as fishing, having a barbeque, or sharing the cooking and celebration of Thanksgiving, don’t stop because your child is visually impaired. Try to help family members learn how to include your child in activities you’ve all enjoyed together in the past. Your early intervention team, if you’re working with one, may be able to suggest some strategies. The staff of national organizations mentioned on this site and, of course, other families may also be of help.