“What is it like to parent a child with a visual impairment?” As a mother of three internationally adopted daughters with visual impairment (VI), I get asked this question a lot. One of my daughters is totally blind in one eye (no eye tissue or optic nerve) and has about 20/70 corrected vision and nystagmus (uncontrolled movement of the eye) in her other eye. She is considered moderately visually impaired. The other two daughters are considered to have severe visual impairment. One daughter can see bright colors and large objects but cannot read any print or see objects smaller than a cat. The other has light perception only. My two daughters with severe VI use white canes when out of the house and read Braille instead of print.
I am going to focus on the some of the questions that might arise when reviewing a file of a child that may have VI and what life is like in a family that includes children with visual impairments. I will tend to focus on the aspects that apply more to children with severe visual impairments, as that is usually a more daunting prospect for prospective parents reviewing a file. However the reader should keep in mind that some visual disabilities or visual conditions may consist of nothing more than a surgery or two, glasses, and regular follow-ups with an ophthalmologist.
Being legally blind generally means that someone has a visual acuity of 20/200 or less in the better eye with the best possible correction. People who are legally blind can have vastly different visual acuities, ranging from the ability to read large print, to seeing light only (commonly termed light perception), to seeing nothing at all. Visual impairment is a more general term that accommodates the wide range of vision possible for this condition, as compared to the word "blind."
In general, the earlier the intervention the better the potential for improving vision or for halting deteriorating vision. During a child's development, the eye and brain are trained to work together to focus and interpret visual images. Many professionals believe that the critical time for developing the brain/optic nerve interactions required for full vision is from birth to about 3 years. Most professionals also agree that up to age 8, optic nerve and brain connections are still being formed in the child. It is generally thought that beyond age 8, no new brain and optic nerve connections will be formed. Thus the earlier the intervention, the better the chances for improved vision. However, even with medical intervention, a child may or may not have "normal" vision. In some cases, the potential for improving vision may be very limited, or may be unknown, especially after age 8.
As an adoptive parent to three daughters with VI, I can honestly state that their visual impairments are the last thing I, or anyone who knows them, think about when asked to describe them. With the technology available today, even severe visual impairment can be relegated to the status of mere inconvenience. This statement is difficult for many fully sighted adults to comprehend. We use our vision so much; it is almost beyond understanding of how we would function without it. But in many conversations with VI adults, it soon became apparent that visual impairment is not the huge disability than most people assume. It will not stop a person from going to college, getting a good paying job, or having a family. The only real disabilities we see in our children are the ones other people try to put on them.
The good news for American parents of children with VI is that there are many resources available for them, and many of them are free. By Federal law, children with VI are required to have access to free educational opportunities. For these children this means early intervention is available as soon as they are diagnosed. A team of education and vision professionals will work with the family and determine the level of services that are required. The team will determine if the child will be a Braille or print reader, or if it would be beneficial for the child to learn both. They will use parental input and their own training and experience to determine whether a cane will help the child navigate. They will also help the child develop the skills needed to live a normal life. Most children with VI attend their local school.
My daughters with severe VI receive the kind of assistance that is typical for most children with VI. They attend their local elementary school. Since it is only a few blocks away, they walk to it by themselves, as part of their training in independent mobility skills. Once there, they are in a regular classroom for all but one hour per day. Although we do not live in a large school district, they have the services of a full-time certified vision teacher, who was hired to teach these two girls. They walk unassisted from their regular classroom to the vision teacher's room each day for specialized instruction in Braille and cane usage. The rest of the time they are in the regular classroom receiving instruction, as does any other student. They have laptops provided by the school district that are adapted especially for the blind. These laptops allow them to do their work in the regular classroom, print it out, and hand it in just like any other child. They are completely mainstreamed and have no problems keeping up with their class. They even read Braille at the same speed (or in the case of my oldest daughter who loves to read, faster) as the other children in their grade read print. Many children in the VI category are not as impaired as our daughters and would not need this level of accommodation.
Our home life is really about the same as any other family's. Our daughters learned their way around our house very quickly and do not use a cane in the house. They are normal kids; they do their hair and clothes themselves, make toast or prepare cereal for their breakfast, set the table, and help with supper preparation. They love riding horses and bikes, swimming and tumbling, doing crafts or singing, and going hiking and camping. We have exactly the same expectations for them as we do for our sighted children – college, career, family, etc. There are some challenges, which include ongoing lessons in independent travel and translating printed items (such as appliance labels) into Braille. But it is truly not a big deal in everyday life. We just get our library books in the mail from the state Braille library (with free postage) instead of from down the street.
I know that visual impairment is a very scary special need for many people and can cause some real soul-searching. It was so for us when we first considered adopting our daughters. But now we honestly have more issues around who misplaced the tooth floss than homework being done in Braille. If you are waiting to be a parent, please consider these children with visual impairments. Our daughters have brought incredible joy to our life in the short time since they have joined our family. The challenges are so much less than the rewards. When I think about the bleak future my daughters might have faced in their home country, it is almost past bearing. They are waiting for families, and they need them so much. Less than 6 months after coming home, one of our older daughters was asked to write an essay in school about what love is. This is what she wrote in Braille: "I cannot see the love, and I cannot holding in my hand, but I no what the love is. Love is my mom help me wash clothes. Love is my mom help me folding clothes. Love is my dad was help me fix my bike. Love is my dad help us get more money for the house. Love is my dad bounce me on the trenpleling. I cannot see the love, and I cannot holding in my hand, but I no what the love is." So do we.