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New Roles for Parents of Children Born Prematurely

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

By Allison Martin

Eight major roles are identified here for the parent who wishes to be an effective advocate for their child with special needs:

1. Detective, 2. Coordinator, 3. Librarian, 4. Communicator, 5. Monitor, 6. Cheerleader, 7. Implementer, 8. Nurturer

Each role is discussed below:

1. The Preemie Parent as a 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. Because there is very little specialized information available on identifying and/or treating long term impacts related to prematurity, it is even more challenging to crack the case.

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.

An additional number of complicating factors may also be involved in diagnosis of long term impacts related to prematurity. For example, many issues and disabilities are not obvious for some time, until children reach a certain age. Equally as frustrating, a child’s symptoms and their diagnoses often change over time. There may be co-morbid disabilities (more than one disability at a time). Symptoms may be borderline and thus all too easily missed. Often the disability related to prematurity is an "invisible handicap", making it difficult to find support for your child and for your family. In some cases, impacts are rare and information is difficult to find. Or symptoms are more prevalent (e.g., behavioral issues, sensory problems and learning disabilities) but cause and treatment are not as well studied as a parent would desire. Parents used to a medical model for treatment may find this confusing and frustrating. Issues which effect some children born prematurely (e.g., ADHD, autism, asthma) may be linked to genetics in the general population, complicating diagnosis and treatment for children whose symptoms may be related to prematurity issues. Solving such mysteries may take parents across a number of different disciplines with different labels and suggestions for treatment. Thus being a good detective is vital in addressing the needs of your child.

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. The Preemie Parent as a 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, ophthamalogists, 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.

As issues arise, parents will seek out those who can address their child’s needs. The public education system will designate resources to meet the educational needs of the student, following an evaluation and eligibility process. They will assign a type of classroom setting and the specialists to address specific issues for each child. It is vital that parents remain involved in this process. While parents rarely play a role in designating the specific individuals on the school team, they should play a significant role in determining the needs and goals for their own child.

With a school, the coordination among teachers, administrators and specialists in providing services and exchanging information is usually quite good. However, parents may wish to monitor progress periodically to ensure that such good intentions are carried out during the year, as other issues arise and the child’s schedule gets more complex.

Often, parents will need to go outside of the school system for the team composition. For example, if their children have medical needs, these will be addressed by doctors or other specialists. If their children have educational or psychological needs beyond what the school system can address, parents may put together a team to work on these as well.

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. The parent is likely to discover that they play a major role in finding and coordinating private services outside the school setting. In addition, almost all coordination between outside specialists and the school personnel will be up to the parent.

A few specific examples of coordination tasks that parents might become involved in include: Ensuring that school occupational therapist and teacher are using the same format to teach the child to create letters, ensuring coordination and communication between your private and public speech therapists so that similar issues are addressed, ensuring that the school’s specialists do not pull the child out of the classroom for services during important subject times or recess, and ensuring that the child receives the services designated in the IEP in a effective format.

3. The Preemie Parent as a 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.

At times the paperwork requirements for a special needs child can be overwhelming. The school system and the doctors and other specialists will provide reams of important documentation, which are sure to increase over time.

Early on, a parent advocate should set up a system of folders. Some suggestions for the files are:

  • Milestones (these will be needed for years, keep a baby book)
  • Promised services (be sure to document in the IEP or 404 plan)
  • Diagnosis (include copies of all reports, tests, etc. and ask your doctors to provide summaries)
  • Medication history (document side effects, effectiveness, dosage, etc.)
  • Medical history
  • School history (dates, addresses, current teachers and staff)
  • Resources and contacts (current and suggested)

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. When you meet with the school on your IEP or with your teacher on individual goals and requirements, request that they to lay out specific goals and implementation procedures with which you are comfortable. Document the services and delivery of services at school as specifically as possible in the IEP itself.

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.

Lastly, parents 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. The Preemie Parent as a 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. For example, the education establishment usually has little interest or understanding of medical issues. Also, it sometimes happens that individual teachers may not be not aware of the significance or application of support services (e.g., speech, occupational therapy, learning disability, etc.) in relation to classroom issues. The converse is also true; while they also wish to be helpful many doctors and private specialists have little interest or understanding of how to be effective in the education system. Thus the parent is often the one to implement the decisions and transfer knowledge as appropriate from one arena to the other.

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 IEP team at the school may be encouraged to talk with one another periodically. 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. Unfortunately this may be true even for those addressing the same disability. 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. The Preemie Parent as a 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 or 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. Monitoring of progress may occur through phone calls, visits, informal and formal meetings and notes. Frequent monitoring will allow the parent to change the support situations as the child changes or react to problems as they arise. The parent shouldn’t hesitate to call to confirm that new people working with the child have been informed of what is important or effective. Additional meetings can be held during the year as needed and this can be important in assessing progress of the child.

One positive way to monitor your child’s classroom is to be a volunteer in the school. Teachers appreciate the help and much can be learned about the place where the child spends the majority of their day. As the parent gets to know other parents, they can provide input on experiences with a school or doctor. Your child’s emotions are another important clue as to what is going on. Experience of parents on the preemie-child online support group indicates that if a parent doesn’t monitor what is going on at school, they may regret it later.

6. The Preemie Parent as a 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.

7. The Preemie Parent as an 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. Reading, math, science, current events, geography, and other educational subjects are all areas that parents can supplement in a fun or more intensive manner. Taking the time to work on these subjects with your child impresses upon them the importance you place in education or other values.

For some areas, the parent may be the most effective or only teacher. Providing guidance and training in manners, social interactions, ethics, morals, behavior, discipline, work ethics can not be left to the school only. In fact, many children born prematurely may need extra assistance in these areas.

8. The Preemie Parent as a 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.

Take time to enjoy your child.

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.


Allison Martin, MPA, is the manager of the Comeunity and Premature Child websites. She has been involved in support for preemie parents since the birth of her son in 1988. This article was first presented at the international conference on prematurity: "Directions for the 21st Century, Bridging the gap between parents and professionals." July, 1999.
 

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