Roles for Parents of Children Born Prematurely : After the NICU
By Allison Martin, MPA and Rick Martin, MPA
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.
1. Parent 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.
2. Parent 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.
3. Parent 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.
4. Parent 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.
5. Parent 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.
6. Parent 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
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.
7. Parent 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.
8. Parent 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,
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
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.
Part 1 of After the NICU : The Birth of Effective Parent Advocates
presented at the International Conference on Prematurity, "Directions
for the 21st Century, Bridging the Gap Between Parents and Professionals."
Allison Martin Copyright 1999, 2001
Allison Martin and Rick Martin are
the managers of the Comeunity and Premature Child websites. They has been
involved in support for preemie parents since the birth of her son in 1988.