Dancing in the rain.

Chelsea brought sunshine into our lives the day she was born in 1992, but she also came with unexpected clouds. She was born prematurely at 27 weeks gestation and weighed only one pound, six ounces. We listened as the doctor told us that 80 percent of babies her size just don't make it, and the ones that do have profound disabilities. Happy Birthday, baby.

We weathered so many things during the four and a half months she spent in the neonatal intensive care unit, and she sailed through most of the storms. From heart surgery to repair a duct, to lung damage from the respirator that kept her alive, to shortened tendons from lack of mobility, everything would be outgrown or repaired with time. The really bad news came at three months, when the doctors told us she had developed retinopathy of prematurity (ROP), a disease in which the blood vessels in her eyes were growing incorrectly and could cause her retinas to detach. It was then that I learned the first of many lessons for raising Chelsea--find a library, research, and network to gather even more information. When the phone call came to tell us she was being transported for eye surgery in the hope that they could halt the progression of the retinal detachment, I was as ready as any layman could be to deal with and understand the medical verbiage and longterm repercussions that would come. At least that's what I thought.

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Many eye surgeries later, we brought her home and began the journey into learning how to raise a daughter who has visual impairments. We slowly got used to having specialists come into our home and lecture us on how to raise her. That one was hard because no matter what the specialists sometimes said, she was still our baby, and we never forgot that sometimes the parents know their child best. We figured it out and made it up as we went along. She didn't like the therapy to stretch a tendon in her foot, so we made a game of it that involved hanging her upside down by her feet--therapy accomplished and no more crying. Not what the therapists recommended, but it worked for her. We never forget that it is all about what works for her.

Chelsea lost all of her vision by eight months of age, and her eyes stopped growing. In order for her eye sockets to continue maintaining a normal growth pattern and appearance, Chelsea got her first set of eye prosthetics on her first birthday, to fill the socket. She slowly grew, she thrived, she learned; it just took her a little longer than the average child.

I think that our oldest daughter, Aleia, had more impact on us and Chelsea than all the therapists combined. Aleia was four years old when her sister was born and rarely resented the attention and time that Chelsea needed. She always reminded us that Chelsea was so much more than blind, and she became the person that Chelsea wanted to emulate. Aleia roller skated, so we had to figure out a way to teach Chelsea to skate. Aleia took gymnastics and, toddling behind her, so did Chelsea. When they got a trampoline for Christmas, the first person Aleia grabbed was her sister and off they went to bounce. Remember, they are sisters, so life is not always sunny skies. They fight and pick on each other, but don't pick on Chelsea when Aleia is around. She is Chelsea's fiercest defender.

Chelsea's having a stable, unchanging physical environment is critical to her learning new skills, and having therapists who have already built up a level of trust with her make it possible for her to advance in her development. These are things that the specialists who work with those with visual impairments recommend, but we are an Army activeduty family and frequent moves are also a part of our life. We have moved five times in the last 12 years. It seems that at about the time we get unpacked, and Chelsea has learned the pathways in the house and her school, and we teach the teachers how to accommodate her disability in order to include her in all academics, and Chelsea has become accustomed to her new therapists and doctors, and life is running somewhat smoothly, here comes another set of orders and off we go. Chelsea has finally gotten used to being dragged around the country, but there always seems to be another battle and more clouds on the horizon.

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My first experience with the individualized education program (IEP) process and the school system was a major storm that had to be weathered. My initial visits to the school nearly broke my heart and my resolve. They wanted to warehouse all of their special education preschool children in a classroom together, no matter the disability or appropriateness, without truly addressing Chelsea's individual needs. It was the first time I had to take on a large institutional mindset in order to get Chelsea what she needed, and it was then that I realized I would have to learn to become her fiercest advocate.

So I took my traits of stubbornness and obsession for detail and used them to gather information and laws that would help me become the best advocate I could be for her. It taught me the second lesson for raising Chelsea--every government entity has a chain of command. They also have an oversight entity, and all of them have rules and laws. You have to have an amazing amount of tenacity to work your way up the chain of command. The Internet is your best friend as you try to find who has the power to intercede for you when the chain of command doesn't work. The laws and rules can be used to demand that the school actually considers the best interests of your child instead of what's easiest for them.

I guess we have come back to the first rule--research. For us, it required calling in the state protection and advocacy lawyers, who stepped in to deal with the school. Most schools do great with specialized classrooms for their students who have severe disabilities, but they are not comfortable mainstreaming a child who also needs to be academically on grade level. It is not a situation that occurs for them very often. While the school had no problem fighting with me and telling me no, they became much more reasonable and flexible when outsiders were watching. So, Chelsea began school in a regular education preschool classroom, with the specialists she needed in order to learn. We had some blue skies for a while.

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I have done some things that I am sure made the school systems crazy, too. When Chelsea was in preschool and needed orientation and mobility (O&M) training for using a cane, the school said they couldn't get anyone; the training would have to wait. After researching at what age to start the process, I bought a small cane and sent her to school. So, here comes this four-year-old with a metal weapon in her hand and no one there to train her how to use it properly and safely. It was amazing how quickly they managed to find a specialist once they had no choice.

I also learned that information is priceless. Knowing that Chelsea would be in a school system a minimum of 14 years, since children with disabilities are transitioned into the public system at three years of age, I set out to learn as much as possible about how the system works. I campaigned and was elected to the school board. From budgets to policy to programs, I learned everything I could. I watched the school system evolve their special education programs into shining examples that addressed individual needs. Word quickly spread through the Army community that Fort Campbell was an assignment to request in order to access the school system, and it is now a base that our family always requests for my husband's assignment.

I do take comfort in knowing that when we leave a system, it's just a little bit better because I work to fix the system, not just the problem, and the families coming behind Chelsea won't have the same issues. This is our third assignment to Fort Campbell.

Perhaps the most unexpected storm occurred from just changing from the middle school to the high school at Fort Campbell--we didn't even change states. While I understand that this has been the first time any of these teachers have had a student with disabilities who was also expected to perform academically, the things that have happened at the high school are horrifying. I have encountered teachers who feel she doesn't belong in their class and refuse to do even the minimum to ensure she can take part. Some have told a roomful of students how much work it was to include Chelsea and that they were sorry she was part of the class. I encountered administrators who don't ensure the teachers follow the IEP and could care less when you try to complain. I have also found some amazing teachers who have done everything in their power to see that she does excel. Unfortunately, the bad is what sticks in your mind.

Perhaps the most heartbreaking part of all of this is that Chelsea is completely socially isolated. She doesn't fit into the special education classrooms, and she doesn't fit into the social structure for her regular peer group. She's unique, and the other children just don't get it. How do you explain a teenager who doesn't care about anything visual (because she can't) to other teenagers whose entire world revolves primarily around their sight and appearance? So, every day, I watch for clouds and do whatever I need to do in order to keep them from turning into storms. You have to stay vigilant. No matter how hard I try, though, there always seems to be another thunderstorm waiting on the horizon.

So, now, we come to the final lesson in raising Chelsea--keep your eye on the future, because the world seems to constantly place barriers that people with disabilities have to overcome in order to access normal experiences. Chelsea is currently in tenth grade and has recently taken the PSAT. Her scores were horrible and didn't reflect what I had seen in her performance in the classrooms. As the school and I tried to figure out why the scores where so low, we realized that the national tests she has to take to get into college are not designed to allow students with visual impairments to perform to the best of their abilities.

The ACT and SAT, while translated into Braille, do not modify the size of math shapes and graphs. The graphs are too small for fingers to differentiate a lot of the information that is needed to answer the question properly. Chelsea also has the issue of being required to do math problems without the ability to move the information contained in the words onto the drawing because she can't use a pencil to quickly solve for x. The test parameters only allow a small extension of time even though using the equipment that would allow her to do the problems takes three or four times as long to just write down the problem much less trying to solve the equations. So here we go again. The school system and I are currently attempting to figure out what steps can be taken in order for the national tests to truly accommodate her disability. Cross your fingers that we are successful, or Chelsea's dream of being a music teacher may not come true.

Before you think that our life is just a series of storms, I want to let you know that we still manage to have many clear, wonderful days. We are a loving, closeknit family who enjoys a somewhat normal family life. Vacationing, boating, gardening, all is done as a unit. With Aleia attending college at Florida State University and Daddy serving in Afghanistan, we treasure every minute together. Chelsea is a gifted musician and is a member of the marching band. She is always determined that she can do anything. When Aleia got a Wii[TM] (a home video game console) for Christmas, we found out that with the volume turned up, Chelsea can play a mean game of baseball. I can't do it, and I can SEE the screen.

There is a freedom to a lot of the things Chelsea does, because she can't see the people looking at her strangely, so she continues on in doing what makes her happy. She has a weird sense of humor. When we are so mad that we want to sit down and cry, we have both learned to laugh, even when faced with some of the situations I have already told you about. It may take a while, but we manage. We have learned to make fun of ourselves, too--her nickname is "Little Blind Kid," and O&M lessons sometimes consist of me trying to push her off the sidewalk instead of leading her. I often wonder how many people have driven by as we are playing that and have thought about calling the police, because it looks a little strange. Hey, you have to find the humor where you can, and it works for us.

Our life is funny, frustrating, unusual, and ever-changing--in other words, it's life. So what advice can I leave you with as you ride your own weather currents? Every day is a mixture of joy and sorrow, so enjoy the sunshine when it comes, and if it doesn't--learn to dance in the rain--it's worth the effort.

Cenema Judd has been married to Command Sergeant Major (CSM) Charles Judd for 24 years. He is the Command Sergeant Major of 1st Battalion, 506th Infantry, and is currently serving in Afghanistan. They are the proud parents of two daughters, Aleia and Chelsea. Cenema actively volunteers in her community, as a tutor in Chemistry and higher math, as a special education advocate, and as a Battalion Family Readiness Group Leader.

RELATED ARTICLE: Fort campbell Exceptional Family Member Program.

By Elizabeth Baltensperger, LCSW

The Exceptional Family Member Program (EFMP) is a mandatory enrollment program that works with other military and civilian agencies to provide comprehensive and coordinated community support, housing, and educational, medical, and personnel services to families with special needs. (The EFMP was implemented through Army Regulation 608-75 (AR 608-75).) The EFMP is active in all branches of the military.

At Fort Campbell, the Army Community Services (ACS) EFMP office works in close partnership with the Medical EFMP office. The ACS EFMP office provides services such as: information and referrals, relocation assistance, advocacy, respite care programs, Camp We Can, monthly support groups and family events, special holiday and annual events, a lending library, command and unit briefings, and other supportive services. The medical side of the EFMP coordinates enrollment and assists with medical needs. Medical EFMP also conducts the required overseas screenings for accompanying family members.

Upon notification that an exceptional family member is relocating to Fort Campbell, contact is made from ACS EFMP, letting the incoming family know about the various services offered. Assistance offered by this office ranges from providing information on area resources to a staff member accompanying a family member to an Individualized Education Program (IEP) meeting. The goal of the program is to link families to needed services, allowing Soldiers to focus on mission readiness, knowing their family's needs are being met.

There are many Soldiers and family members who are unaware that EFMP is anything more than forms that need to be completed. Our goal is to have all eligible families receiving the needed community support services to make their families happy, healthy, and whole. Great strides within EFMP are being taken to standardize some of the processes in place, including the respite care program and the Special Needs Accommodation Process (SNAP). The SNAP is required when a child with special needs is requesting care at a Child, Youth and School Services facility. It is important that families know that we are here to serve them. If a family member is not aware of the services offered at their local installation, they are encouraged to make contact with the ACS EFMP office and learn what services are available to them.

Elizabeth Baltensperger, LCSW, is a clinical social worker serving as the Army Community Service Exceptional Family Member Program (EFMP) Manager on Fort Campbell.

RELATED ARTICLE: Understanding retinopathy of prematurity.

By Richard L. Windsor, OD, FAAO and Laura K. Windsor, OD, FAAO

Retinopathy of prematurity (ROP), originally called retrolental fibroplasia, was the leading cause of blindness in children in the 1940s and 1950s. Today, there is an increase in ROP, due to the fact that neonatal care advances mean more low-weight premature infants are surviving.

The Cause

From 16 weeks to birth, retinal blood vessels grow out from the optic nerve to reach the peripheral retina. In premature infants, the normal growth of blood vessels stops, and abnormal vessels may occur. These vessels lead to a formation of a ring of scar tissue and, as the scar contracts, it may pull on the retina, creating a retinal detachment. Our understanding of ROP is changing. Traditionally, the view was that high oxygen exposure was the cause. Studies now show that it is not just exposure to oxygen after birth, but it may also relate to actions that occur to the fetus prior to birth.

Prevention

To prevent ROP, good prenatal care is essential. This care lessens the risk of delivering premature infants. In the hospital, monitoring by a pediatric ophthalmologist or retinal specialist skilled in ROP is essential in lessening the advancement of ROP.

Treatment

Cryotherapy, or the freezing of the retinal tissue, has been used since the 1970s to treat ROP. Today, laser therapy has been shown to be as effective as cryotherapy, but with fewer systemic side effects. Special Low Vision Concerns In Young Children Unlike an adult low-vision patient, a child's visual system, eyes, nerves, and brain, are still developing. Parents need instruction on creating the best environment for their child with visual impairment. Visual stimulation techniques, proper toy selection, creating proper contrast, alternate learning methods, parental narration, and control of light and glare must be planned. In addition to other specialists, these children should be followed by the appropriate low-vision professionals. As the child grows, educational needs must be assessed and the appropriate educational environment developed for each child.

Eye Safety Issues

Since ROP patients frequently have one better eye, protection of the remaining functional eye is important. Patients who have only one functional eye should wear adequate protective eyewear fulltime. When possible, polycarbonate lenses are preferred, due to their high-impact resistance. Additionally, physical education in school and other recreational activities must be limited to safe, nontraumatic activities, due to increased risks for retinal detachment.

Resources

The Association for Retinopathy of Prematurity and Related Diseases (ROPARD) provides information, at http://www.ropard.org. They also publish a newsletter on ROP. Their postal address is: ROPARD, PO Box 250425, Franklin, MI 48025.

This information was originally published in the Vision Enhancementjournal. The original article can be found at http://www.lowvision.org/retinopathy_of_prematurityxx.htm.