New Roles for Parents of Children Born Prematurely : After the NICU

By Allison Martin, MPA and Rick Martin, MPA

Discussion of parental roles for effective interactions with professionals in the diagnosis and treatment of long term special needs of children born premature.

One of the biggest aspects of the transition created when you bring your baby home from the Neonatal Intensive Care Unit is the realization that now you are the one ultimately responsible for your child. The feeling of responsibility hits almost at once. It is often triggered again at the first sign of a problem - an apnea monitor alarm, your child's difficulty with feeding, nightime wakings or the early signs of a cold. The second realization, that you are now also in charge, usually takes a little longer. Over time you become aware that you know your child better than many professionals and yet that you need help in handling your child's special needs.

In order to provide care for a child who has special needs, however long that may be, you now find yourself taking on a variety of roles additional to that of parent. These roles enable you to have effective interactions with professionals in the diagnosis and treatment of the special needs of your premature child. We have found that there are at least eight major roles that parents of children born prematurely fill: Detective, Coordinator, Librarian, Communicator, Monitor, Cheerleader, Teacher, and Nurturer.

Preemie Parent's Role as Detective

All parents must play detective at times. They must search for clues to keep up with the mysterious changes children can go through in each developmental stage. However, the parent of a child with special needs often faces an even more challenging task in identifying and treating long term impacts related to prematurity.

Some problems are well known (e.g., cerebral palsy, asthma, autism, learning disabilities) and have a history of treatment and a number of specialists to call upon that meet the needs of many families. Yet even then, each child is unique, and parent detectives may need to evaluate additional information, issues and referrals from doctors, specialists, therapists, and support groups to identify individual problems and treatment.

If your child receives a "label" or diagnosis, your job as a detective is just beginning. Now you will want to focus on finding the best resources for assisting your child. Parents will want to learn as much about the disability or issue as possible, so that they can find the appropriate people to provide support and treatment, set up goals and transfer information, and work with their child themselves. Doctors, specialists, therapists, literature, support groups, other parents, the Internet - there are many sources of information to search through in finding the best way to meet your child’s needs. Not only will the parent invest a lot of time and energy in seeking out information, they must sort through and evaluate what is best for their own child and family.

Preemie Parent's Role as Coordinator

If the child has many long term needs or issues, a team of experts will play an essential role in addressing these. A good team will prove invaluable to both the child and the family. The team composition depends upon the needs of the child. Members may be a combination of private or public (e.g., Departments of Education, Health, and Welfare) experts and professionals or a combination of both private and public team members. A variety of professions may be represented on the team, such as pediatricians, developmental pediatricians, neurologists, pulmonologists, opthamologists, child psychologists, occupational therapists, physical therapists, teachers, special education teachers, and so on. Parents may need to designate team members, work with them to set priorities, assess progress and change the team composition as the child’s needs change. The parent will also be responsible for much of the information transfer across the team and over time.

Parents will find that they must coordinate activities across medical specialists, among educational professionals, and with other support services to ensure continuity and to focus resources effectively. Traditionally, pediatricians coordinated medical services, treatment and specialists for parents. Unfortunately, caseload and financial considerations make this difficult for even the most attentive pediatrician.

Preemie Parent's Role as Librarian

As in the NICU, documentation is important for the care and treatment of a child with special needs, but now it is the parent’s job to keep track of it, and perhaps even to create it. The types of documentation needed include the child’s medication history, school contacts, school plans and tests, professional and support contacts, milestones, personal goals, legal documents, hospital and doctor records, illnesses, diagnoses, treatment plans and so on. Early on, a parent advocate should set up a system of folders to organize this information. Keep a detailed baby book as well, it will prove invaluable in the future.

As often as possible, try to get documentation directly from the professionals who work with the child. You may need to make a special request, but most people are glad to provide this. Doctors can be requested to address questions and provide diagnoses in letters, which can then be used for meetings with school personnel or other professionals. Many specialists will send a copy of their assessments and progress reports to the parents. Some will not, however. When parents visit the child’s pediatrician, they should check the file to see if any new information from specialists has arrived. The parents may wish to raise some of the issues right on the spot. In any event, parents should be sure to get a copy to take home and review.

Pparents will want to create a chronology or history of their child’s issues, setbacks and progress that they can update over time. Usually, the NICU discharge report provides a good starting point. The focus may change for each doctor or issue, but often pieces can be reused. This medical summary will become a very useful document for both you and your doctors for years to come.

Preemie Parents Role as Communicator

If a child has many or significant special needs, the parent will be working with experts and professionals for a long time. However, unlike the NICU, they may be in a situation where they know more about certain issues than do some of the people with whom they are interacting. As often as possible, the parent should try to get different members of the team to talk to one another. Doctors may be requested to call each other or write short summaries. Therapists may be able to meet or talk by phone. The parent may need check back to make sure that the connection is made.

Parent now find that they have a new job as translator. Doctors, teachers, therapists, specialists, support groups, literature and personal observation all provide information which the parent will want to pass on to others on their team. Often, professional jargon, models, and treatment from one area of expertise may not be familiar to an expert in another area. Since the parent can rarely gather the whole team into one room, a major part of the job will be to learn from the specialists and transfer information from one person to another.

Your first meeting with a new doctor will be more effective if you can provide the relevant reports, a summary of your child’s medical history, current medications, and your questions and goals ahead of time. Their time is expensive and limited; this professional courtesy helps tremendously to focus your visit. To continue good communication down the road, many doctors and specialists are willing to answer simple questions over the phone from established clients.

Preemie Parent's Role as Monitor

Once you have set up your team, it is essential to monitor your child’s progress, including the implementation of your child’s treatment plan (and in preschool the IFSP or in school the IEP). This involves a variety of tasks. For example, parents should keep in touch with school therapists and teacher(s), provide feedback to their doctor on medications and other health issues, and talk to the therapists about treatment progress and goals. This may feel uncomfortable, but it is important.

Preemie Parents Role as Cheerleader

Foremost of importance for a child who has a more difficult time in the world is the parent’s role as a cheerleader. It is up to the parent to equip and empower the child so that they can eventually be as independent and successful as possible. Positive feedback has been shown to be the most effective behavior modification technique available. In the long run, a parent’s support and enthusiasm is crucial to the child’s self esteem.

Children will receive an indirect benefit if the team members receive a boost as well. The child’s teachers, doctors, therapists and other members of your family will all appreciate encouragement. A verbal thank you, notes, phone calls, treats for the class and teacher, and attention are usually well received. This can encourage communication and smooth the road for future interactions. Plus everyone enjoys it.

Preemie Parents Role as Implementer

No matter how big or small the issue, the parent can be sure that they will play a large role in implementing the solution. Homework from school, remedial education, behavior management plans, medication, therapy exercises - sometimes it seems like the implementation tasks are endless.

Preemie Parents Role as Nurturer

Sometimes the importance of other roles can make parents of special needs children forget what a central focus we are in our children’s lives. The most important role parents play for their child is that of a loving, nurturing parent.

Part of a parent’s job is to provide balance and security in their children’s lives. Such balance can easily be lost when there are multiple or severe needs to address. Our family has found it helps to set priorities (e.g., developmental progress targets, treatment regimens, social activity opportunities, etc.) for six months at a time. As a team, we reassess and refocus when needed on a regular basis. Taking frequent breaks and vacations, even if you do not leave your home, can also be beneficial for everyone. Many members of the preemie-child support group have found that it is important to balance physical activity with more cerebral activities, especially as the child starts school. Although it takes planning and stamina, therapy goals and extra educational or psychological activities can be integrated into a family’s normal life - for example by using fun activities like swimming, horseback riding, trips to the library, quiet activities at home, as learning and developmental experiences.

A family’s home life is the bedrock for the child’s security and future. Affection, acceptance and appreciation can make a major difference in a child’s behavior. This is especially true if they are constantly struggling with daily activities that they find difficult. Ideally your home is a oasis where children can recharge before coping with the stresses of the world. Playing with siblings, quiet reading times, special time with a parent, and little celebrations may be the most important times in a child’s life.

Conclusion

Parents do not necessarily come to advocacy for their special children by nature. They come to advocacy having survived the NICU--perhaps the most emotional and stressful time of their lives. It is important that parents of children of special needs understand the breadth and depth of the roles they must play in their child’s life. It is a difficult and sometimes overwhelming responsibility, but the benefits for parent and child are ultimately rewarding.

Apparently this article resonated with many parents and professionals in the preemie and special needs arena. Since this paper was first published on the internet, these ideas have been replicated in a wide number of articles and books on both parenting and special needs. This paper was originally presented as part of my article, The Birth of Effective Parent Advocates in the NICU,, International Conference on Prematurity, "Directions for the 21st Century, Bridging the Gap Between Parents and Professionals." July, 1999. Copyright Protected

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