New Roles for Parents of Children Born Prematurely : After the NICU
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.
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.
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.
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.
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
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,
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
Allison Martin is the writer and web publisher of the Prematurity, Childrens Disabilities Information and the Comeunity websites. She manages the Preemie Child support group for parents of preemies who are school age or older. She has been involved in support for preemie parents since the birth of her son in 1988.
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