The Balanced Mind Foundation is committed to providing information that will empower parents to increase their effectiveness as parent advocates.  Learning how to be your child’s advocate doesn’t happen overnight, but it doesn’t have to be overwhelming.  In the process of reading this material, you will gain practical information that will increase your effectiveness – and your confidence – in advocating for a “free and appropriate public education” (FAPE) for your child.

ADVOCACY

In discussing educational advocacy, we all recognize that it is just one part of a parent’s role.  Before a child gets out of bed in the morning, while she is looking for misplaced homework, or frantic over a missing pair of shoes, we are there.  After the child comes home from school, with a book bag filled with assignments and crumbled letters we are there.  At dinner, when we are able to prepare it, and well into the evening hours when rapid cycling may make homework or even a good night’s sleep impossible, we are there, doing our best to cope, doing our best to parent our child.
 
To address the big picture of parenting and caring for a child with bipolar disorder, The Balanced Mind Foundation invited Mani Pavuluri, MD, PhD, associate professor of child psychiatry at the University of Illinois at Chicago, to offer insights into our larger role as parents.  The Balanced Mind Foundation asked her to address the question, “How can we not only help our children in school, but also beyond?”  In this video, Dr. Pavuluri will discuss the Rainbow Program, a form of treatment that parents can practice at home in the course of daily life.  The Balanced Mind Foundation is grateful to Dr. Pavuluri for sharing her expertise with all of us.  Note:  Be sure to watch her other presentation in the Brain and BP Section.

BECOMING AN ADVOCATE FOR YOUR CHILD

One of the biggest contributions you can make to the emotional well being of a child with bipolar disorder is to become an effective advocate for the child’s educational needs.  It’s not a small task, but the rewards can be enormous.  Obtaining the accommodations, special education placement and/or related services that your child needs can result in a major reduction of stress, both at school and at home.

The term advocate has different meanings. In schools the term advocate is most often used to describe a person who has training and specific knowledge to assist families as they navigate through special education screening, evaluation, placement, and any future decisions related to special education programs. Parents are advocates too. In every family, parents are recognized as their children’s’ first teachers. Parents are the primary decision makers to ensure their children’s safety, health, and education needs are met. Whether they elect to advocate for themselves or choose to work with someone else who holds the official title of advocate, parents have the right to be full partners in their children’s education.

As advocates in the school setting, it will take time and effort to develop an understanding of the process.  This process involves working with the school system, learning your child’s legal rights to a free and appropriate public education, and identifying the resources inside and outside of the school that can help you put in place the services and accommodations your child needs.

You’ve probably already learned a great deal about the symptoms of bipolar disorder and the medications commonly used to treat it.  In addition, you’ve probably learned some parenting techniques that help prevent tensions at home from escalating.  This resource will help you take on the other fundamental factor that influences wellness in your child, making sure that his/her school is a supportive and positive experience.

WHAT DOES IT MEAN?

What does it mean to be an educational advocate?  It sounds overwhelming to me.  I am so exhausted from all the phone calls and visits to Tanya’s therapist and psychiatrist.  How am I going to take on the school as well?-- Gemma, mother of Tanya, age 7

A dictionary definition of advocacy is “the act of pleading or arguing in favor of something, such as a cause, idea, or policy, active support.”  To advocate for your child in the educational system is to speak on behalf of your child and his or her specific learning needs.  To become an effective advocate for your child, it is important that you:

• Develop a clear understanding of how your child’s illness affects learning
• Become familiar with the vocabulary of education specialists
• Learn the best ways to manage the complex relationship with the other adults on your child’s educational team, who often have divergent perspectives.

Learning how to advocate doesn’t happen overnight.  It doesn’t have to be overwhelming.  That’s why The Balanced Mind Foundation developed these articles on advocacy.  You can work through each section at your own pace.  In the process of reading these materials, you will learn how to prepare yourself to become an effective advocate.

At first, I was so nervous whenever I met with the school.  I would vacilitate between fighting back the tears about my son’s behavior and trying to prove that I wasn’t a “bad” mom who was the cause of my son’s behavior.  The Balanced Mind Foundation taught me how to approach the school with confidence and how to build a collaborative relationship. Today, school meetings are stress-free! – Susan, mom to Michael, age 12.

QUALITIES OF EFFECTIVE ADVOCATES

By understanding the processes and laws that govern special education parents can be well equipped to participate fully within multi-disciplinary teams (MDT). Each State and school district has its own set of policies. But each will have established protocol that must be followed. MDT includes parents, classroom teachers, site administration, and special education staff members. All decisions must be made based on evidence to determine whether and/or what special education services are appropriate for each child on an individual basis. Working collaboratively, having knowledge of their rights, and being prepared all are factors that increase the odds children will be provided the most appropriate placement and services to ensure success. Parents can improve this process by building partnerships with staff, providing helpful information, and by coming to the table with a clear purpose along with an open mind.
 
One thing that is important for parents know that not all students with mood disorders need special education. Obtaining an IEP or even a 504 does not automatically ensure an appropriate education. In fact it can be something that lowers teachers’ expectations and the likelihood of a quality education. Each child and every situation has to be considered based on one learner and his/her needs.

The more knowledge parents have about the processes and laws that govern school systems, the greater the likelihood that their children will be provided needed services available under special education legislation.  Parents who become effective advocates for their children are able to work within the system, building partnerships, providing helpful information, finding creative compromises, and, most importantly, ensuring that everyone involved is focused first and foremost on the needs of the child.  Research clearly demonstrates that at-risk learners whose self-esteem is encouraged, and who are offered opportunities for academic success in positive learning environments, are better equipped when the time comes to enter the work force as adults.

DECIDING WHAT TO DISCLOSE  

I am a custodial grandmother.  At first I didn’t want to go into any details.  After all, it’s been a rough road.  Once I was able to tell Roberto’s story, I felt that the school could see my grandson as a child with a disabling illness. I felt less tension, too, because I didn’t have to hide anything anymore. – Rosa, grandmother to Roberto, age 14

Privacy laws prevent any staff, including members of the MDT from disclosing any personal information about your child. Further, if an evaluation is conducted, these records must be stored in secure locations. Parents must provide permission in writing before any staff can access special education documents. You must give specific permission before teachers, counselors, administration, school psychologists can share information pertaining to your child’s case. This is true even as students move to a new grade level. Student information is confidential unless you specifically tell the school differently.

An important part of your role as a parent advocate is to educate the team of adults working with your child about your child’s disorder.  To become an advocate, a parent or guardian must begin to share his or her story as well as the stories of others.  Sharing your child’s personal story with others, and thereby refusing to wear the “shroud of shame” that often comes with having a child diagnosed with a neurological brain disorder, is essential to the advocacy process.  

Parents who withhold information from the school about their children’s diagnosis may be doing a significant disservice to all parties and to the child in particular.  It may be uncomfortable or painful at times to discuss the child’s struggles at home.  However, sharing a fuller picture of the child’s life allows others to understand the waxing and waning that is characteristic of pediatric bipolar disorder.  School personnel may not be familiar with bipolar disorder at all, or they may be familiar only with symptoms of late-onset bipolar disorder often seen in adults. Critically important is information about your child’s physical needs and potential side effects of medications, especially if you have recently changed medication.

The best advocates understand collaboration, which sometimes means compromise and finding unique solutions to best meet the needs of children.  IDEA requires a group decision making team with parents as full partners. These teams must follow guidelines and a pre-established protocol in every situation. This is for the benefit of learners so children are not unfairly labeled or unnecessarily restricted from access to general education programs. As part of this decision making process parents must recognize that it is almost always necessary to try a variety of interventions, accommodations and strategies, both at school and at home, before their child can be legally identified as a child with a disability under the Individuals with Disabilities Education Act (IDEA).

SEEING THE TOTAL PICTURE

If only the school could see what he’s really like at home?  As soon as he bursts in the door, the raging begins.  Sometimes, I think they don’t believe me. – Catrina, mother to Antoine, age 9

One potential source of frustration for parents and school personnel is that neither party sees the total picture of the child’s daily behavior.  Children with bipolar disorder are often able to “hold it together” during the day at school.  However, what parents often experience is that the child’s “letting loose” only occurs only at home.  A child’s behavior can be startlingly different in the two settings.  Parents sometimes hesitate to divulge the extent of disturbances at home.  Some may fear that some school personnel believe that if they don’t see the behaviors a parent describes, those behaviors do not exist.  Some may also fear that school personnel will assert that the child’s behavior at home is due to poor parenting or the household environment.  The more you educate the team about bipolar disorder, the less likely these attitudes will persist.

Sharing your child’s story also legitimizes the disability.  By not providing full disclosure to the school about their child’s illness, parents send an unconscious message to the child that bipolar disorder is something to be ashamed of, or that the child did something wrong that caused this disorder to happen.  Many parents experience feeling of guild as well as self-doubt upon receiving a diagnosis.  Accepting one’s grief, recognizing the challenges ahead, and becoming a “stigma buster” as coined by NAMI (National Association of Mental Illness) helps a parent become an affective advocate and a strong member of the child’s treatment team.

BUILDING A SUPPOPT NETWORK FOR YOURSELF

I couldn’t bear the isolation any more.  Once I joined a support group, I felt immense relief.  Meeting other parents of children diagnosed with bipolar disorder gave me support I couldn’t find anywhere else. – Jim, father of Stephen, 16 and Sherri, 14

It is important for parents to develop support networks for themselves.  Joining local support groups or online support groups offered by The Balanced Mind Foundation allows you to share resources, build alliances, and find support to deal with the stress of raising a child with a long-term medical condition.

The Balanced Mind Foundation has a vast Find a Professional Resource directory where parents can research and share resources, locate schools, support services, and doctors.  Sharing information with other parents, as well as teachers, school officials, therapists and doctors, helps educate them to become advocates for your child as well as other children who may be experiencing symptoms of pediatric bipolar disorder.

In addition, please read the other articles in our Education Corner.  The Balanced Mind Foundation also offers online support groups, forums and chat rooms.  There you will find experienced parents who can lend a helping hand.

DISCLAIMER

The Balanced Mind Foundation recommends that parents try to work collaboratively with their child’s school to address the child’s educational needs.  However, there are times when parents and schools cannot agree concerning the programs and services a child needs.  There may be many reasons why a parent’s advocacy efforts may not result in an appropriate education for the child.  In those instances, The Balanced Mind Foundation strongly urges you to contact an attorney who is experienced in handling special education matters.  The Balanced Mind Foundation does not recommend that a parent attempt to handle adversarial proceedings (such as due process hearings) without an attorney.  This article is not intended to offer legal advice or detailed instruction in the law.  The Balanced Mind Foundation does not offer legal advice and this article will not teach you how to act as your own attorney.