Franchesca was born on August 2, 1986, with anophthalmia, a condition in which the child has no eyes. An MRI when she was six indicated that she may have some optic nerve development. The above picture was taken when she was 9 years old. She is now 14 years old and still very tiny for her age.
Franchesca has had numerous surgeries in the attempt to provide her with prosthetic eyes. These surgeries were done incorrectly, and during some of them she was not anesthetized. She was given Phenobarbital daily for 18 months as a sedative to keep her from doing things which would interfere with the healing process.
Franchesca is classified educationally as mentally retarded and speech handicapped, in addition to being totally blind. It is not known how much her speech difficulties and blindness interfere with her ability to display her intellectual abilities. She has a large vocabulary and is quite expressive; however, her words are difficult to understand much of the time.
I met Franchesca when she was two and a half years old. I was one of several teenagers providing child care at a local support meeting for parents. Franchesca and her two older sisters were among the children for whom we were caring. Franchesca was very active but still unable to walk. Shortly after I met her, she began wearing AFO's, a special kind of brace designed to correct the turning inward of her feet. When I met Franchesca, she could not talk or perform any self-care skills.
Since that day in 1989, I have watched with sheer joy and excitement as Franchesca, whom I affectionately call Fran, has developed the skills of walking, talking, feeding and dressing herself independently, and much more. During the 1998-99 school year, she was in a self-contained classroom. Her classmates had varying disabilities, including autism and cerebral palsy. Franchesca was the only child in the classroom who was verbal. Her mom reported that she had an uncanny ability to identify the needs of other children in the classroom who cannot be understood by the teacher.
This year, Franchesca is included in general education classes at her local middle school. Her favorite subject is choir. Although starting middle school was anticipated to be difficult, Franchesca is enjoying herself and has made some friends.
Franchesca also receives adaptive physical education, orientation and mobility instruction, and speech and occupational therapy. She is mastering the correct use of the white cane.
Franchesca has inspired me to continue to be involved in various ways with families of blind children, including the development of on- line resources.
Franchesca has made great strides in communication skills and other areas. She puts forth much effort in trying to make others aware of her feelings and needs. She recognizes and initiates conversations with familiar people, even requesting to talk with me by telephone.
Franchesca is a delightful person with a great sense of humor and a very compassionate personality. She is not always in the mood to talk much, but often she enjoys conversations and will volunteer all kinds of information. This is my transcript of a conversation with her which took place on May 13, 1998. She was 11 years old. I asked her if she would like to write a story together. What follows is the result of our conversation.
Note: In this conversation, Franchesca makes reference to talking loud at school. She tends to speak very softly, and one of her goals is to speak louder. She also makes reference to sweeping her cane. The cane is designed to be moved back and forth in front of a blind person, thus providing tactual input about objects in front and just to either side of the body. Franchesca has very poor fine motor skills and has had a great struggle with controlling the back-and-forth motion of the cane, generally being content to hold it straight in front of her.
Franchesca: Franchesca Dawn Forsythe is my name. I play on my dizzy disk. It's at school.
Sarah: What's a dizzy disk?
Franchesca: It's a dizzy disk that you spin on and go around and around and around. I like to spin on it while I make it go.
Sarah: What else would you like to talk about?
Franchesca: I go to school at Sibell's. I am 11. I'm in sixth grade. I learn braille. (She proceeded to sing her ABC's.) I can count. (She counted to 20.)
Sarah: What else do you do at school?
Franchesca: I can talk loud at school. I can take a bubble bath at home. I spin on my dizzy disk at home. I live in Mill Creek Apartments. I have two sisters. One is 13 and one is 15, one named Christina and one named Kelly. Angela is my mommy. She snuggles with me. She tickles me. I tell her not to and she still tickles me.
My eyes are blue. I have big eyes. I got a haircut. My hair is yellow. It's long.
Mr. Bryan teaches me how to sweep with my cane.
Sarah: Why do you have to do that?
Franchesca: Because that's the technique.
I like music. I love Sarah. I like to take a bubble bath. When you go to bed, you lay down and go to sleep.
(Some time passed, and I talked with her mom for a while. The next bit of conversation we had went like this.)
Franchesca: I'm frustrated.
Sarah: Why are you frustrated?
Franchesca: Because you can't understand me. I like you to talk to me. I eat sausage and eggs for breakfast. I eat eggs and toast. I make a turkey sandwich. I sleep in the bed.
Sarah: When is your birthday?
Franchesca: My birthday is August the second.
Some more time passed, and we had a repeat of some of the topics previously discussed.
Franchesca: People stare at me. It makes me feel angry and sad. When people talk to me and don't stare at me it makes me feel good.
This afternoon franchesca called me to tell me about her school year. She has just completed seventh grade. She participates in the symphonic band and the choir. She has mastered the braille alphabet and is reading three to five-letter words. She also recognizes the numbers 1 to 5. "Next year," she said, "I'm going to learn 1 to 8."
Franchesca's conversational skills are greatly improved since the last time I talked with her. She volunteers information without prompts and has less repetitive questioning. She is also putting together more complex sentences.
My youngest daughter, Franchesca, was born with anophthalmia. She was a full-term pregnancy with no complications. They discovered her eye problem after she was born when they couldn't put silver nitrate in her eyes. No one will ever understand what it's like to have a child born with a handicap unless you are that person. She is a very special little girl who has gone through so so much in her short little life. Through the years she's had numerous surgeries on her eyes, not to correct a problem but for the doctor to experiment different techniques upon her. When you have a child born with an abnormality, you try very hard in the beginning to do whatever you can to present your child as normal. I went through this stage. It's called denial. When you come to the point in your life where you accept your child as is, from that point on you and your child can go forth and conquer many things together.
It has not been easy raising a child with a handicap, let alone on your own as a single parent. I feel my faith in God and the friends who have supported me have helped make Franchesca what she is today: a special little girl with a disability. It took me a long time to get to this point, but she is a special little girl with a disability, not a disabled little girl. If you look at your child, or any child, with the idea of "I can" instead of "she cannot" you will go very far. My best advice to any parent is to love your child with all your heart and treat him with the best care and discipline you know how to give. Love never fails.
The following links are places where I have found information that has helped me in learning about what Franchesca is going through. If your child has any of the conditions that she has, these may be helpful to you.
What is Anophthalmia?
This is a good brochure from the International Children's Anophthalmia Network explaining what anophthalmia and microphthalmia are and possible causes. Contact information for organizations providing services to people with micro/anophthalmia is included.
The Conformer
Here are some samples of the ICAN's newsletter.
Message board
Here is a Web-based message board for discussion of anophthalmia and microphthalmia and related issues.
Lens Microphthalmia Syndrome
This document from the National Organization for Rare Disorders explains the genetics of Lens Microphthalmia Syndrome and assiciated features.
Microphthalmos
This link from the Texas School for the Blind and Visually Impaired provides the text of Dr. Virginia Bishop's article on the impact of microphthalmia on a child's educational needs and appropriate modifications in the classroom.
Movements Online
This page provides information about orbital implants for people with anophthalmia or who have had an eye removed because of injury or damage from another eye condition.
Information and Diagnosis
This information from the Micro/Anophthalmic Children's Society (MACS) explains various types of micro/anophthalmia and related disorders.
Studies
This page presents the findings and progress of studies of the occurrence and causes of anophthalmia, microphthalmia, and coloboma in Scotland.
Stories
Here are stories of families who have children with micro/anophthalmia and how they have coped. One of the stories here provides great information for helping siblings cope with comments from others.
Franchesca has had a lot of difficulty with self-stimulation. Some of this she has overcome. In the blindness field, it is commonly believed that self-stimulation (also referred to as stereotyped behaviors, mannerisms, or blindisms) is the result of boredom or lack of sensory input. Fatigue and emotional upset may also be contributing factors. Below are some links related to self-stimulation and the teaching of leisure skills.
I have witnessed the struggle of this family to come to terms with having a blind child and with many other aspects of everyday life. I hope that they will share more, and I plan to keep this page updated regularly. Angela is willing to communicate with other parents of children with anophthalmia about her experiences. She is finally on line. If you wish to write to her, please drop her a line via me and I will pass it on. As soon as I have her permission to share her email address, I will change this link so that you can email her directly.