Building Healthy Families When a Baby Is Blind or Has Low Vision

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The birth of a baby is a pivotal moment for a family, impacting everyone from parents to siblings, and extending to grandparents, aunts, uncles, and cousins. When your baby is born with blindness or low vision, this can introduce unique challenges and changes for the entire family.

Supporting Your Partner

You and your spouse or partner might experience a whirlwind of emotions. It’s crucial to support each other during this time. Focus on the love within your family and the strength you can draw from each other. This can make it easier to navigate the complex feelings that might arise. Remember to take time for yourselves, both individually and as a couple. Continue engaging in activities you enjoy, even if it’s not as frequent or easy as before.

Adjusting to this new situation takes time. Life is a series of transitions, and you’re currently in the midst of one. Remember, you’re not alone. Connecting with others in similar situations, through conferences or workshops, can be incredibly helpful. However, if feelings of being overwhelmed persist, consider seeking professional counseling or support.

Attention to Siblings

If you have other children, your new baby’s condition will undoubtedly affect them. Their reactions will vary based on their age and understanding. They might want to help their sibling or feel jealous of the extra attention the baby requires. It’s important to balance the needs of your child with blindness or low vision with the needs of your other children.

Managing Grief and Emotions

It’s natural for all family members to experience grief for the “typical” baby they expected. Feelings of anger, depression, or jealousy are normal. If these feelings lead to concerning changes in behavior, such as a decline in school performance or withdrawal from social activities, professional help may be needed.

Setting Realistic Expectations

While involving siblings in the care of their brother or sister is beneficial, it’s important not to overburden them. Encourage them to participate in activities they enjoy and spend quality time with them. Keep them informed about their sibling’s condition and upcoming changes, without overwhelming them with details.

You can’t expect a big sister to always be “on duty” to help her 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.

Supporting Everyone

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 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 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 sibling who is blind or low vision. If you’re in a parents group or an early intervention program, you’ll meet people who can probably put you, and your family, in touch with other kids in a similar situation so that they can compare experiences and learn from one another.

Involving Grandparents

Grandparents often have a special bond with their grandchildren. They may need guidance on how to interact with a grandchild who is blind or has low vision. Like siblings, they may grieve for the grandchild they expected. Encourage them to treat your child like their other grandchildren, emphasizing the need for love and support.

Maintaining Family Activities and Traditions

If you and your family usually do things together, don’t stop because your child is blind or low vision. Try to help family members learn how to include your child in activities you’ve all enjoyed together. 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 other families may also be of help.

Positive Family Dynamics

In summary, when a baby is born with blindness or low vision, it significantly impacts the entire family, including parents, siblings, and grandparents. Parents may experience a range of emotions and should support each other while continuing to engage in activities they enjoy. Siblings might feel a mix of wanting to help and feelings of jealousy, necessitating a balance in attention and involvement. Grandparents also need guidance to maintain their special bond with the grandchild. It’s important for the family to manage grief and set realistic expectations, seeking professional help if needed. Maintaining family traditions and including the child in activities is crucial. Overall, open communication, education, and support within the family are key to navigating the challenges and changes brought by a child’s visual impairment.