Fran's Page: Children with Anophthalmia

Fran’s Page: Children with AnophthalmiaFRANCHESCAFranchesca was born on August 2, 1986, with anophthalmia, a condition inwhich the child has no eyes. An MRI when she was six indicated that shemay have some optic nerve development.

Franchesca has had numerous surgeries in attempts to provide her withprosthetic eyes. These surgeries were done incorrectly, and during someof them she was not anesthetized. She was given Phenobarbital daily for18 months as a sedative to keep her from doing things which would interferewith the healing process.

Franchesca is classified educationally as mentally retarded and speechhandicapped, in addition to being totally blind. It is not known how muchher speech difficulties interfere with her ability to display her intellectualabilities. 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 ofseveral teenagers providing child care at a local support meeting for parents.Franchesca and her two older sisters were among the children for whom wewere caring. Franchesca was very active but still unable to walk. Shortlyafter I met her, she began wearing AFO’s, a special kind of brace designedto correct the turning inward of her feet. When I met Franchesca, she couldnot talk or perform any self-care skills.

Since that day in 1989, I have watched with sheer joy and excitementas Franchesca, whom I affectionately call Fran, has developed the skillsof walking, talking, feeding and dressing herself independently, and muchmore. Today she is in a self-contained classroom. Her classmates have varyingdisabilities, including autism and cerebral palsy. Franchesca is the onlychild in the classroom who is verbal. Her mom reports that she has an uncannyability to identify the needs of other children in the classroom who cannotbe understood by the teacher. Franchesca also receives adaptive physicaleducation, orientation and mobility instruction, and speech and occupationaltherapy. She is mastering the correct use of the white cane.

This page is dedicated in part to Franchesca, who has inspired me tocontinue to work toward my certification as a teacher of the visually impaireddespite obstacles presented by my own blindness and to continue to be aresource to parents of blind and visually impaired children.

A Note from Franchesca

This is my transcript of a conversation with Franchesca which took placeon May 13, 1998. She is now 11 years old and has recently learned to callme on the telephone independently. Today I asked her if she would liketo write a story together. What follows is the result of our conversation.

Note: In this conversation, Franchesca makes reference to talking loudat school. She tends to speak very softly, and one of her goals is to speaklouder. She also makes reference to sweeping her cane. The cane is designedto be moved back and forth in front of a blind person, thus providing tactualinput about objects in front and just to either side of the body. Franchescahas very poor fine motor skills and has had a great struggle with controllingthe back-and-forth motion of the cane, generally being content to holdit straight in front of her.

Franchesca: Franchesca Dawn Forsythe is my name. I play on my dizzydisk. It’s at school.

Sarah: What’s a dizzy disk?

Franchesca: It’s a dizzy disk that you spin on and go around and aroundand 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 countedto 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 havetwo sisters. One is 13 and one is 15, one named Christina and one namedKelly. Angela is my mommy. She snuggles with me. She tickles me. I tellher 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 goto bed, you lay down and go to sleep. I’m

(Some time passed, and I talked with her mom for a while. The next bitof 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 turkeysandwich. 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 previouslydiscussed.

Franchesca: People stare at me. It makes me feel angry and sad. Whenpeople talk to me and don’t stare at me it makes me feel good.

Notes from Mom

My youngest daughter, Franchesca, was born with anophthalmia. She was afull-term pregnancy with no complications. They discovered her eye problemafter she was born when they couldn’t put silver nitrate in her eyes. Noone will ever understand what it’s like to have a child born with a handicappedunless you are that person. She is a very special little girl who has gonethrough so so much in her short little life. Through the years she’s hadnumerous surgeries on her eyes, not to correct a problem but for the doctorto experiment different techniques upon her. When you have a child bornwith an abnormality, you try very hard in the beginning to do whateveryou can to present your child as normal. I went through this stage. It’scalled denial. When you come to the point in your life where you acceptyour child as is, from that point on you and your child can go forthand conquer many things together.

It has not been easy raising a child with a handicap, let alone on yourown as a single parent. I feel my faith in God and the friends who havesupported me have helped make Franchesca what she is today: a special littlegirl with a disability. It took me a long time to get to this point, butshe is a special little girl with a disability, not a disabled littlegirl. 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 parentis to love your child with all your heart and treat him with the best careand discipline you know how to give. Love never fails.

Links

The following links are places where I have found information that hashelped me in learning about what Franchesca is going through. If your childhas any of the conditions that she has, these may be helpful to you.

Franchesca has had a lot of difficulty with self-stimulation. Some of thisshe has overcome. In the blindness field, it is commonly believed thatself-stimulation (also referred to as stereotyped behaviors, mannerisms,or blindisms) is the result of boredom or lack of sensory input. Fatigueand emotional upset may also be contributing factors. Below are some linksrelated to self-stimulation and the teaching of leisure skills.

I have witnessed the struggle of this family to come to terms with havinga blind child and with many other aspects of everyday life. Angelais willing to communicate with other parents of children with anophthalmiaabout her experiences. Unfortunately, she does not have on-line access.I hope that someday she will be able to purchase a working computer andmodem so that she can get on line and take advantage of the wonderful informationand support offered by the Internet community. For now, she has agreedto share her and her family’s story via this Web site, and I am willingto field information back to them. If you wish to write to them, pleasesend email to me at Sarahfiles@geocities.comand put the words “to Angela” in the subject line. I will be glad to readyour mail to her and to take down her dictated response or to pass alongsnail mail addresses as appropriate.