A Vision of Their Future: Adopting a Child with Visual Impairment
A mother to three children with visual impairments, adoptive parent Velleta Scott is an expert in training on opathalmic disorders and parenting the once unknown. Velleta sat down with some of the questions she once had and gives her firshand invaluable perspective.
What is it like to parent a child with a visual impairment? As a mother of three 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 that have severe VI use white canes when out of the house and read Braille instead of print.
Considering the adoption of a child with a visual disability. Visual disabilities cover a wide spectrum of conditions. I am going to focus on the some of the questions that might arise when reviewing a file of a child that may have severe VI, and what life is like in a family that includes children with visual impairments. Keep in mind, some visual disabilities or visual conditions may require nothing more than a surgery or two, glasses, and regular follow ups with an ophthalmologist.
However, for those children with VI that is not correctable or has a lower likelihood of success with surgical intervention, perhaps my family's experience will shine light on what this looks like.
What is blindness or visual impairment? When prospective parents are reviewing the medical information of a child with ophthalmic issues, one of the first questions they usually ask is "Is the child "blind?" However, most people have a very specific definition of blindness. Ask the average person on the street to define blindness, and they might say, "When a person can't see anything - just darkness."
That answer only accounts for about ten percent of the people who are legally blind. 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. For this reason, throughout this article, the term visual impairment (VI) is generally used rather than the word blind. VI is a more general term that accommodates the wide range of vision possible for this condition, as compared to the word "blind".
What can we do about his or her medical condition? The question we eventually began asking, and the one we believe the prospective adoptive parents should ask, is, "What is required to give this child the best quality of life?" To answer that also requires answering, "What are the probable outcomes of this child's ophthalmic condition?" It is very difficult to determine a young child's visual acuity. It is almost impossible for medical professionals to give parents a definitive statement about how well a child will see without being able to examine the child (and sometimes even after the exam). They may be willing to give ranges of outcomes, but much depends on different factors in an individual case - how old the child is, what caused the visual impairment, and what (if any) medical intervention has taken place in country. In many cases, accurate information about any or all of these is simply not available.
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.
So, what does it mean to have a visual impairment? In terms of everyday life, less than most people think. As an adoptive parent to three VI daughters, 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 is inconvenient, surely. But it will not stop a person from going to college, getting a good paying job, or having a family. We know many people with severe VI who are parents, who have college degrees and work in ordinary white collar or professional jobs. The only real disabilities we see in our children are the ones other people try to put on them.
Can we do this? This brings us to the question many prospective adopters ask when they are reviewing a file - what will this child need in life? Can we provide what they need? Again, I want to caution that it can be very difficult to determine visual acuity in young children. Children generally use the vision they have very well, and compensate for a lack of vision in ways adults have a hard time comprehending or even noticing. As a child grows, a parent is often in a position to observe better than a doctor what their child can and cannot see. A parent will observe if their child can see the family cat, the toy car on the floor, and how close they might sit to a television or computer. A parent can tell if the child sees their smile, and from how far away. The parent will notice if the child often misses steps, or appears startled at going from one surface to another.
But what does a parent do with this information? 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.
So what does this mean in practice? It can mean that a child is given a cane if required and instructed in the use of it. It can mean that they start Braille or large print at the pre-school level. It can mean they are simply followed by the team, with regular visits/evaluations, and any needed modifications are decided on a year by year basis. Once a child starts school, any specialized equipment needed for them is provided free of charge. In addition, by law, the child must have the services of a teacher who is certified in teaching visually impaired children. Children cannot be forced to attend residential schools for the blind.
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 that are adapted especially for the blind that the school district provided. 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.
Please keep in mind that my daughters are considered severely visually impaired. Most children in the VI category are not as impaired as our daughters, and would not need this level of accommodation. For a large print reader, all a vision teacher may need to do is make sure that all classroom materials and books are in suitable font. This level of accommodation is all that is needed for our daughter who is blind in one eye only.
But what about home life? 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.
Our families were quite nervous when we first announced our decision to adopt our daughters. They were worried for us, that it would be "too much to handle." Now they see how well our children fit into our family, and that the level of commitment is similar to that for raising any child (a lot!). They are still amazed at hearing the girls read Braille aloud at the same speed as a sight reader their age reads print, but they are getting used to it. They are very happy that our children have joined the extended family, and they are very proud of their progress.
If we adopt, what could our child with VI hope for in the future? Our two daughters with severe VI were school aged when we brought them home. They have told us of the pain of wanting to go to school in their orphanages, and not being allowed to because of their visual impairment. They are so grateful just for the opportunity to go to school each day. They have told us the only thing they thought they could do when they grew up is be a massage therapist, as that was about the only option for blind people in their home country. It took quite a while for them to believe they could dream about getting married or being a doctor, teacher, or mother. They thought that wasn't possible for them. They told us they had encountered other blind children and adults begging on the streets in their home country, and were afraid that was how they would end up. Now like any other children they are learning to dream - to decide if they want to be a doctor, a teacher, a veterinarian. It is an amazing thing to watch them realize that visual impairment doesn't define them. Although it is an inconvenience, it isn't going to stop them from achieving their dreams.
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. Please consider opening your hearts and homes to one of these precious waiting children. 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 know 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 trampleling. I cannot see the love, and I cannot holding in my hand, but I know what the love is."
So do we.
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