Parenting Without Sight
What Attorneys and Social Workers Should Know about Blindness

From the Editor: In the preceding article one can't help being sad about how differently the Baby Mikaela story might have been had hospital and children's services personnel known something about blindness. Our Blind Parents Interest Group has a new brochure that should be distributed to every hospital and social service agency in the country. You can order it from the Independence Market. Ask for “Parenting Without Sight: What Attorneys and Social Workers Should Know about Blindness.” It can also be downloaded from our Website at <http://www.nfb.org/images/nfb/publications/brochures/blindparents/parentingwithoutsight.html>. Here is a snapshot of what we in the National Federation of the Blind have to say about raising young children.

Kids Come First!

Nothing is more important than keeping kids safe and giving them the best possible start in life. That's why you became a child protection social worker or a lawyer in the family court system. You fight for kids. It doesn't matter if keeping them safe requires you to step on toes or to be politically incorrect. No matter what, you fight for kids.

No one ever said it would be easy. You're expected to do the work of at least three people. Pressures come from everywhere--from families, the press, advocacy groups, and politicians.

Then there's the issue of social justice. You must protect children in a way that respects religious, cultural, and ethnic differences. You must not discriminate on the basis of race, disability, or sexual orientation. How can you balance the needs of children against your commitment to be respectful of differences? When is "different" broadening and enriching? When is it dangerous? With all of these pressures and dilemmas, how can you win? What's even more important--how can the kids win?

Like you, the fifty thousand members of the National Federation of the Blind are determined to protect children. Many of us are parents, adoptive parents, foster parents, or grandparents. We come from all ethnic backgrounds and from every state in the nation. We are teachers, lawyers, laborers, and secretaries. Some are electricians, computer programmers, machinists, or social workers, and some of us live on public assistance. In other words, we are a cross-section of society. What brings us together is our belief in the absolute normality of blind people.

We in the Federation have a particular interest in reaching out to child protection workers and other professionals concerned with the well-being of children and families. Our experience has taught us that blind parents are scrutinized far more closely and judged to be unfit more frequently than sighted parents in similar circumstances. Interventions often occur, not because of documented problems, but because caseworkers and judges fear that problems may arise in the future. Federation leaders estimate that as many as one in four households in which the parents are blind have been visited by workers from child protection services. Furthermore, blindness has often been argued as grounds for terminating parental rights in custody cases. We believe that these interventions and decisions stem from a lack of understanding of blindness.

We believe that anyone, blind or sighted, who harms or endangers a child should face the consequences of that behavior. But we insist with equal vigor that blindness in and of itself should not be considered a risk factor. Here is a quick test for a child protection worker to apply in assessing any case involving a blind parent: ask yourself, "Would any action be necessary in this situation if both parents were sighted?" If the answer is no, the answer should be no in a situation involving a blind parent.

Busy as you are, you don't have time to conduct research on blindness and learn all of the things you think you ought to know. Fortunately it isn't necessary to know volumes about blindness in order to assess a blind parent's capacity. It is necessary to begin with an attitude of optimism and belief. Thousands of blind parents have raised happy, healthy children who have grown into responsible, productive adults. Given the positive track record of blind parents, it's reasonable to start with the assumption that blind people have the same capacity for parenting as sighted people do and that they are competent unless and until proven otherwise. Don't be afraid to ask questions. Keep an open mind, and listen to what we tell you.

Our Way

"How can you manage?" Most of us who are blind have heard this question over and over throughout our lives. Sighted people find it hard to understand how blind people go about the tasks of daily life. As a sighted person you may think that you couldn't possibly prepare meals, cross streets, buy groceries, or hold down a job if you couldn't see. You may have heard that blind people do all these things and more--a blind man even climbed to the summit of Mount Everest. Nevertheless, you may find it hard to believe, deep down, that the things you've read and heard are true.

It's hard enough to imagine how someone who is blind can hurry down a flight of stairs or light the back burner when the pilot goes out. How then, you wonder, can a blind mother keep track of a rambunctious toddler? How can a blind dad take his preschooler to the park or teach his daughter or son to ride a bicycle? How can blind parents keep their children safe in our dangerous world?

At every stage of our children's lives, from infancy to young adulthood, blind parents use the basic methods and strategies essential to parents who can see. Clear, consistent rules and a reasonable degree of organization usually keep the home front from getting out of hand. On those unforgettable nights when the sink backs up, the cat goes missing, the computer crashes, and Megan's science project is due the next day, we do some creative re-planning and clutch at a few shreds of humor, as all parents do when the going gets tough.

To accomplish some tasks, blind parents use "alternative techniques." These techniques are variations on the methods we use to handle other aspects of our everyday lives and are based on touch and hearing rather than sight. There are no absolute right or wrong ways for blind parents to do things; each of us chooses the methods that suit us best. We each bring our own set of skills and deficits, and what is simple and obvious to one blind parent may seem tricky to another.

Though our adaptive techniques might surprise and even amaze you, try to keep in mind that to us they are generally unremarkable. If you catch yourself assuming that some problem is too daunting for us to solve, stop to give it careful thought. Try not to draw conclusions before you discuss the situation with us and listen to what we have to say. We have extensive experience living without sight, and most of us have developed excellent problem-solving skills. In addition, through support networks across the country, we can draw on the expertise of thousands of other blind parents who have gone before us. Be willing to learn from us and with us.

A number of blind mothers and fathers have contributed their time and ideas to the preparation of this booklet. In the pages that follow they share their child-raising experiences and describe some of the alternative techniques that help them be effective parents. We know we cannot answer all of your questions here, but we hope to demonstrate the resourcefulness and enthusiasm, playfulness, warmth, and wisdom which blind women and men bring to the challenge of raising children.

On Your Mark, Get Set...

Whether we are birth parents, adoptive parents, or parents in the foster-care system, children seldom drop into our lives unannounced. We generally have nine months to prepare, and, by the time a baby arrives, we have the basics in order. When the due date rolls around, most blind and sighted parents have acquired a crib, a changing table, and an assortment of charming outfits for newborns. We may have had a baby shower and received a host of toys, clothing, and gadgets, both practical and impractical. In eager anticipation we set up a room to welcome the newest member of the family.

For the most part friends and relatives are delighted by the news that a baby is on the way. However, blind parents occasionally run a gauntlet of skepticism and even dismay. One blind mother reports, "When Tim and I told my mother-in-law that we were expecting, she was horrified. She turned her back on us and walked away. Till then she'd always been very friendly to me, and I thought we had a good relationship. But she just couldn't get her mind around me taking care of a kid when I can't see." Such interactions can twist what should be a joyful time into a time of stress and apprehension. For all parents-to-be the support and encouragement of loved ones is invaluable. If our families doubt our abilities, we as blind parents turn to others who can give us the unqualified support we need. We have to remember that the doubts of others are in no way a reflection on our actual capabilities.

Some prospective parents, blind and sighted, have already logged years of experience taking care of babies and small children. They've babysat, cared for younger siblings, or worked in day care facilities. Others, however, are total novices. Blind parents-to-be, like our sighted counterparts, can catch up on baby care skills in a variety of ways. We might spend a day with a friend or neighbor and practice changing her baby's diapers or feeding him a bottle. We might get a relative to show us how to dress and swaddle a life-sized baby doll. We can also enroll in parenting classes at a local hospital and ask the instructor to give us hands-on demonstrations of diapering, bathing, and other baby care tasks.

From the beginning it's important for us to establish comfortable, open communication with the healthcare professionals who work with us. We try to be clear about our needs and expectations and to ask and answer reasonable questions. If we find that our obstetrician or midwife has unalterable negative attitudes about our parenting abilities, we may be wise to switch rather than fight. We want and deserve the same respect accorded to other parents in prenatal care and during the birthing experience.

"Emphasizing your blindness will often make other people focus on it," warns Dena Wainwright of St. Paul, Minnesota. "My husband and I drew up a birth plan that did not say anything about my blindness. I had an absolutely phenomenal hospital experience. Not a single person questioned my ability to care for Elyse, and no one made any issue of my asking to be shown how to do things. Even when I sent my husband home for the night to get some good sleep, no one freaked out about `the sighted parent’ leaving me alone with our newborn. No one insinuated that I wouldn't be able to breastfeed or treated me any differently because of my blindness. The only thing they did to accommodate me was that they had each nurse introduce the nurse for the upcoming shift to me when she left for the day so I would know that the person coming into my room was a hospital employee."

And Baby Makes Three

Because babies are so helpless and dependent, people often assume that infant care is especially difficult for blind parents. Actually, most of us find that blindness presents very few extra challenges when we take care of babies. Like sighted parents we become experts at interpreting our baby's cries, gurgles, and babbling. When we hold her, we can read her moods through her body language. We feel her reach her arms toward some enticing object, stiffen at the sight of a stranger, or droop her sleepy head against our shoulder.

Changing diapers is a way of life for parents of babies. Diapering is easy when we get the hang of it, but it doesn't come instinctively. Like any other first-time parent, the blind parent must be shown how to perform the task and given the chance to practice. We use our hands to make sure the clean diaper is positioned properly. Some blind parents buy cloth diapers with snaps in order to avoid using safety pins, but others handle pins without difficulty. Like sighted parents many of us choose to use disposable diapers.

Nose and fingertips tell us when the baby needs a diaper change. We can easily feel the dampness and heaviness of a dirty diaper--and of course the sense of smell provides a major clue. When cleaning the baby's bottom, we try to be systematic, working carefully from one area to the next with cloth or baby-wipe. Diaper rash can easily be detected by touch, because it produces raised bumps and causes the skin to feel unusually warm. However, the mild redness that may precede a full-blown rash is not so discernible. In this instance, as in many others, an ounce of prevention is worth a pound of cure. Debbie Stein of Chicago explains, "After my daughter was born, a nurse in the hospital suggested that I dab on some A&D Ointment each time I changed her diaper. The ointment soothed any slight irritation and prevented diaper rash from developing."

Like sighted mothers, blind mothers who breastfeed position the baby by touch and judge by her behavior when she has had enough. Blind parents can make up formula by using measuring cups of the necessary sizes. A funnel is helpful for pouring the formula into the bottle. Latonya Phipps of Baltimore recalls, "I would use my carefully washed hands to guide the nipple of the bottle into my daughter's mouth. I'd check with my fingers now and then to make sure she had a good hold on it."

When introducing solid food, the blind parent usually guides the spoon with one hand and locates the baby's mouth with the other. Babies as young as seven or eight months sometimes lean toward the oncoming spoonful of peaches or sweet potatoes or even reach for the spoon to bring it closer. Babies can be just as proactive, however, when they're not hungry or when they take offense at the cuisine. Ample bibs for parent and child are almost a must. Some blind parents also find it helpful to spread newspaper or a plastic tablecloth on the kitchen floor at mealtimes. No matter what the precautions, spoon feeding is bound to be hit or miss for a while, whether or not the parent can see. Sponges and towels work miracles; they are a boon to parents everywhere.

For blind parents transportation is a major issue, and it begins presenting challenges as soon as the baby arrives. At home and in other familiar places we can carry the baby in our arms or sling her onto a hip as most sighted parents do. In other environments, however, we rarely have both hands free. We always need one hand to hold a dog-guide harness or a long white cane. The remaining hand has to open doors, examine merchandise, fish for change, pull out a credit card or ID, and carry packages. How to carry a baby as well sounds like a crisis in logistics, but the strap-on baby carrier provides a ready solution. Baby carriers such as the Snugli or GeriPack enable a parent, blind or sighted, to carry an infant safely and comfortably while leaving the hands free for other chores.

Our alternative techniques come into play when we turn to baby strollers. The conventional method--pushing the stroller along the sidewalk--simply doesn't work for us. A cane or dog guide can't warn us of steps and obstacles as far ahead as the stroller's front wheels. Fortunately, a few strollers on the market are designed with a reversible handle and can be pulled as well as pushed. The cane or dog guide works fine when we take the baby out for fresh air, pulling the stroller behind us.

The Jingle of Little Feet

Nothing is more delightful than to share in a small child's discovery of the world around him. Every new toy, each leaf or stone, every bird or butterfly is a fresh surprise. To a toddler furniture seems made for climbing and bouncing. Drawers and cupboards are meant to be opened. Every object cries out to be touched, prodded, tasted, and--given the time and opportunity--taken apart. The possibilities are truly wondrous. From a parent's point of view, however, the possibilities include poisons, precipices, and a host of other perils. A thousand worst-case scenarios lie in wait. Blind or sighted, the parent of an inquisitive small child must be constantly vigilant.

How, you may ask, can the words "blind" and "vigilant" go together in the same sentence? The very idea of a blind person in charge of a toddler's safety may make your heart plummet. Here again good organizational skills, alternative techniques, and common sense enable blind parents to watch over their children, even through that exhilarating, exhausting into-everything phase. As soon as a baby begins to crawl, most blind parents attach small bells to her shoes or clothing. The jingling of little bells lets us know where the child is as she runs and plays. "Just before my daughter was able to walk, I started figuring out how to place bells on her shoes," says Jeff Altman, a blind dad from Nebraska. "The final design consisted of two of the mid-sized jingle bells on a small key ring. With a key ring at the bottom of the laces of each shoe, she could not get the bells off. Whenever I didn't hear the bells, I knew she was into something." Some parents put bells on plastic fishline and thread it through the eyelets on the shoes along with the laces. Others prefer to pin bells to sleeves or pants cuffs. Squeaky shoes, popular with toddlers and preschoolers, also give excellent sound cues.

A sighted parent can be vigilant from a distance. For blind parents keeping tabs on a small child is up close and personal. In many situations we may be much more hands-on than parents who can see. We physically follow or stay with the child. When visiting a friend's home or yard, we explore and ask questions to learn about possible hazards. "I had to feel very comfortable with the layout of the area before letting my little ones loose," explains Judy Jones of Vancouver, Washington. "Even then I kept my ears alert. Blind parents can't afford to sit on their backsides and watch their kids. Most of us find that this contact is a major plus for us and our children. We spend lots of time together, playing, talking, laughing, and enjoying one another's company.”

Safety First

Most parents, including those who are blind, try to avoid accidents by child-proofing their homes. Outlet covers, cupboard locks, and stair gates are a tremendous help and comfort. Sometimes extra creativity is needed to solve a particular safety problem. Jeff Altman explains, "In our living room we have a stairway to the basement with an open spindle railing. We could not find a gate that would securely block the top of the stairway, and there was the problem of the open spindles, so I made a gate and a barrier for the railing out of foam core-board from the local hobby store. I used Velcro to hold the pieces in place, and it worked great."

Being well organized is a help to all parents, certainly to blind parents. If we're careful about shutting gates, locking up household cleansers, and keeping small, indigestible objects off the carpet, we go a long way toward creating a safe environment.

Once the child outgrows the stroller and backpack, we work out new ways for traveling together. On the street or in the shopping mall most of us maintain physical contact with a small child at all times. A simple hand-holding device, consisting of a light wrist strap, can help keep the child within easy reach.

If a child is taught from the beginning to hold a parent's hand, the habit can last for years. "I made a rule that any adult, blind or sighted, had to hold my kids by the hand when they went out somewhere," says Deborah Kendrick of Cincinnati, a blind mother of three. "I didn't want my kids to get used to running wild when they were out with a babysitter or relative and then think it was boring to hold hands when they went places with me."

Taking small children to a park or playground presents some special challenges. Sarah Merrick of Michigan explains how she handles outings with her four-year-old twins. "I waited until my children were old enough to respond when I called them," she says. "I'm careful to choose parks that are safe—I only go to parks that are fenced. I try to arrange trips with friends who have older children. You can hear all the giggling and shouting, and it's easy to identify your child that way. I also institute the rule that they come when I call them or we go home for the day."

Like sighted parents blind parents are extra careful around water. Naturally we follow the array of precautions that sighted parents take—making sure that lifeguards are present, having kids wear appropriate life jackets or water wings, and drumming in rules about staying at the shallow end until you can really swim. Again, close contact is the bottom line. We tend to play a lot of games with our kids when we go to the lake or the pool. We keep our children within reach until we know they are good swimmers. Even then we are careful to maintain voice contact.

Sick Days

Even with the best safety measures, all kids have accidents now and then, and occasional childhood illnesses are inevitable. As blind parents we learn to recognize signs and symptoms, bandage cuts, and administer medicine. Most rashes are discernible by touch. With our fingers we can detect heat, roughness, or swelling of the skin in affected areas. "Our pediatrician explained to me how chicken pox would feel, so I would know what to watch for. Sure enough, his description was accurate for both girls—at the same time! What a week that was!" recalls Judy Jones.

With the help of an inexpensive talking thermometer, a blind parent can take a child's temperature independently. The plastic cups that come with many bottles of medicine have raised markings on the inside, and these are a great help when we have to measure doses. Also a syringe can be marked with tactile lines. In some cases we may arrange for a sighted person to fill several medicine droppers to the desired dose. These can be stored and used as needed.

Like all parents a blind parent knows his child better than anyone else does. We quickly learn to distinguish an ordinary demanding or uncomfortable cry from the cry that means real injury. By touch we can examine the child for cuts and scrapes and apply the needed ointments or Band-Aids. However, children sometimes don't want to be touched in the region that hurts. "One thing that helps is to give a child who is old enough a cold compress and have him place it on the affected area," one blind mom suggests. "It numbs the area a little, and you can remove it in a minute and examine the injury." We can generally make a rapid assessment about the seriousness of the problem and determine when it's time to get a doctor's help.

 

Giving a Dream

One of the great satisfactions in life is having the opportunity to assist others. Consider making a gift to the National Federation of the Blind to continue turning our dreams into reality. A gift to the NFB is not merely a donation to an organization; it provides resources that will directly ensure a brighter future for all blind people.

Seize the Future

The National Federation of the Blind has special giving opportunities that will benefit the giver as well as the NFB. Of course the largest benefit to the donor is the satisfaction of knowing that the gift is leaving a legacy of opportunity. However, gifts may be structured to provide more:

• Helping the NFB fulfill its mission
• Realizing income tax savings through a charitable deduction
• Making capital gain tax savings on contributions of appreciated assets
• Providing retained payments for the life of a donor or beneficiary
• Eliminating or lowering the federal estate tax in certain situations
• Reducing estate settlement costs

NFB programs are dynamic:

• Making the study of science and math a real possibility for blind children
• Providing hope for seniors losing vision
• Promoting state and local programs to help blind people become first-class citizens
• Educating the public about their true potential
• Advancing technology helpful to the blind
• Creating a state-of-the-art library on blindness
• Training and inspiring professionals working with the blind
• Providing critical information to parents of blind children
• Mentoring blind job seekers

Your gift makes you a partner in the NFB dream. For further information or assistance, contact the NFB planned giving officer.