There is a room with a bed, dim lights, and bustling activity. My only daughter, pajama-clad, is hooked to electrodes on toes, fingers, and forehead by a team of white-coat professionals. Talking and joking goes on, no life or death struggle here. Preparations are being made for a polysomnogram (PSG), an overnight test measuring and documenting abnormalities in the sleep. The next day she will take part in a Multiple Sleep Latency Test (MSLT) performed to see how long it takes a person to fall asleep during four or five naps at two-hour intervals (Wunder 3). She is being tested for narcolepsy. She is only fifteen years old.

Reluctantly driving home that night, having been reassured that she would be just fine, I vow to learn everything I can about narcolepsy and be there for her at every step of the way. I will be her advocate. As a parent I had always thought of myself as an advocate for my children, but this would be different. I had no idea how different!

My daughter was a classic case with the cataplexy, sleep paralysis, and excessive daytime sleepiness. That was thirteen years ago, and I have learned much since then. However, this letter is not to define narcolepsy, discuss symptoms, causes, or treatments. This letter is my impassioned plea to other parents of children with narcolepsy to become their greatest advocate, their loudest cheerleader. The first step in this ongoing process is to educate yourself and your child about the disease. Your own physician is the primary place to begin. In recent years there have been volumes of research conducted and published. You will find excellent sources both in print and online that will help you.

The Narcolepsy Network, Inc. and the National Sleep Foundation are two of the better known organizations for support and information. Your child needs to understand what is going on with him/her. It can even be a relief, as it was with my daughter, to have a name to put with what has been happening. My daughter has always been one to read and learn about anything that interested her. Narcolepsy, a new word in her vocabulary, led her on a search that continues even today. It may not be this easy to get your child selfmotivated. If not, then present what information you think will help them the most for their present age level. They will pick up on this pattern of learning as time goes on and when called upon to deal with situations themselves. Educating yourself and your child is an enormous job, but it does not end there.

Since narcolepsy is often misunderstood and considered a relatively rare disorder, many people you encounter will be unfamiliar with its symptoms. You should now be prepared to educate the rest of your child's world. This includes family, friends, and most of all, the education system serving your child. Family and friends may love your child, but this does not mean that they will immediately understand what is going on. The old adage, "If it ain't broke, don't fix it," may come to mind often as you deal with others. You can't see narcolepsy as you might see a broken limb and the treatment is subtle, unlike chemotherapy or radiation. Your child may be labeled as lazy, unmotivated, or learning disabled. You can only educate, not force others to think a certain way. Family and friends can become a needed support system for you and your child. The education system can be another story altogether.

I speak from both sides as an educator and a parent. Even though tremendous strides have taken place in the thirteen years since my daughter and I first began our battle, this is the arena where you will have to advocate the hardest. In doing this you will set an example for your child to follow in the future. The time will come when your child, a young woman or young man, must champion his/her own cause. In the meantime, you have work to do.

You must first inform the school of your child's disorder. Provide the school administrators, teachers, and nurses with printed information. If necessary, and your physician is willing, have him speak to those who will be directly involved with your child. Don't be put off by busy schedules. Know when you go in what services your child has a right to by law. Do not expect a school to jump up and provide a list of all the ways they can help. It may happen, but it is likely that you will have to come "armed" with your own information.

Your child is protected under the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and Section 504 of the Rehabilitation Act. If your child does not qualify as a special education student, as many do not, Section 504 will serve you well. Schools that receive any federal funding at all must comply with the guidelines for serving the disabled. Precedents have been set for accommodations such as breaking up of testing times, stretch breaks, note takers, early dismissal or late arrival, individualized testing situations on state and national examinations, and numerous other interventions to help the child succeed. These will be for you, your child, your physician, and the school to work out. Do not let them put you off and "drag their feet" on this issue. Your child will fall behind in school while waiting for his/her rightful accommodations. Don't give up; help is out there.

We as parents never cease to be advocates for our children, but the day will arrive when we work from the sidelines rather than the playing field. As preparations begin for the transition from secondary school to postsecondary options, you may be less familiar with the protections offered by these same federal acts that have served you through the years. It is essential that you become knowledgeable about how these laws function on the postsecondary level. Familiarize yourself with the ADA Title II and Title III. Also, Section 504 still applies to any schools that receive federal financial assistance, which is the case in most situations. These protections still exist, but now there is more responsibility on the part of the student to request and help in the design of his/her own program (Leuchovius 1).

Now is when all that modeling of advocacy will be the key to success. Again the quest to learn, to educate, to ask for, and even to demand will begin anew. The difference is this time you can watch proudly as your child becomes a self-advocate. The "torch has been passed."

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