Article reproduced from The Pediatric Network

In NY State we are in the throws of summer vacation with the temperatures in the 80′s to 90′s. It is sticky and humid and school is out for the summer. My family takes summer vacations seriously and our lifestyle changes during these few months of heat. We decided several years ago that summer was not a good time to be away on long hot vacations. So we chose then to put our money into a backyard pool. We had found that our children with CFS could enjoy prolonged activity in the pool without the usual paybacks. Dr. Bell felt that due to the constant water pressure on the body when in the pool, their blood didn’t collect in the extremities causing the usual problems associated with Orthostatic Intolerance. Whatever the reason, we were thrilled that they could enjoy a bit of “normal” childhood activity. So now most of our summer vacations center around our pool and our deck. We are also fortunate to be able to enjoy weekends at our family cottage on Lake Ontario where we can visit with extended family each weekend, and enjoy time away from home without the long drive.

If your child is so ill that they are truly bed-bound, then consider a vacation without leaving home. Change the surroundings for your child and create an imaginary escape. Buy a bright pastel colored spread for the bed. Decorate the walls with posters or pictures of places they’d like to see. Grace the walls with a picture of a dirt road winding through the trees, or a sailboat moving along to a gentle summer breeze. Together you can travel the road and spin yarns of imaginary adventures that you encounter on your journey. You can plant a small windowsill garden to water and watch grow and imagine seeing it on your journey. You can take a “vacation” from life, right in your home if that is all you can manage. I have been a part of several “virtual vacations” on line where people meet at their computers and go places together in their minds. The imagination is a powerful tool, and by helping our children to use it we can help them to escape for a little while.

My children are fortunate to really wax and wane with the seasons, and my husband and I are fortunate to be in good health, so we are able to plan some real escapes away from home. Vacation planning has changed though since the kids got sick. In general, we no longer plan trips that require a lot of driving, or walking. We leave the hectic, fast-paced vacations to our memories and opt for slower easier more flexible outings. When planning this article I wrote to a half dozen parents of children with CFS for their ideas. Several have CFS themselves, but all wrote back with basically the same ideas. Flexibility is key as well as attitude and mindset. Vacations now center on “getting away” not prolonged excessive new activities. It is not important to go somewhere and see everything. It is important to go. I am in total agreement with my friend, who wrote, “We just lessened our expectations or rather redefined the vacation to be a time to relax and not do much. It was quality family time for all.”

Some of the ideas that these Moms wrote to me were:

1. Meeting other families with CFS at hotels midway between their homes. One mom wrote, “We met up with one of our daughter’s penpals and let the girls just hang out in the hotel. They loved seeing each other in person and we enjoyed meeting the other family and getting the support and there were no expectations to do anything at all.”
2. 3 moms mentioned vacationing at a cabin in the woods instead of a hotel in the city. Spending the days watching the wildlife scurry about, and the clouds float by can be the most ideal way to escape and rejuvenate. This is much like Jean said about their vacations at Jekyll Island on the beach. The girls could hang out on the beach or in the motel room. But it was quiet and at their pace.
3. If you are staying at a hotel, make sure it is close to places you plan to visit. Do not save a few dollars on accommodations that leave you with a ½ hour drive to any destination. See if you can find a room with a small refrigerator or even kitchen accommodations so you can keep food in your room. Sometimes the cost of a small suite is only a bit more than a room.

Other tips that I have learned and gathered are:

• Carry water in a small insulated jug. In our family we each own water bottles ranging in size from 16-32 oz. with shoulder straps on the insulated holders. Before an outing we fill the bottom inch or two of each jug and freeze it. Then when we leave we fill the remainder with cold water and it stays cold most of the day. They now have misty mate coolers that are about 1 Liter in size and strap to your waist. They fill with water and have a tiny hose, which lets off a fine mist when turned on. (Our daughter keeps hers by her bedside to use at night as well.)
• Carry small snacks in a belt bag.
• Take a wheelchair to conserve energy and make or buy a carry all to go on the handles.
• Get a handicap parking permit if you do not already have one.
• Take enough medicine for your stay and a few extra days in case you get stuck. Also remember other over the counter medications for such things as upset stomachs, sore muscles, sore throats, etc.
• Talk to your child about their expectations. LISTEN to them on what they think THEY can handle. If they know that you care and understand that their needs are different than the healthy family members and that they will not spoil the fun for all if they need a break, it will make for a nicer holiday for all. If all members of the family realize that flexibility is the key to the family get-away, it will be a nicer time for everyone. Take downtime activities with you such as a deck of cards, books, art materials, anything your child can do if resting in the room is all they can manage.
• If you will be staying with or visiting friends, be sure they understand your vacation plans and priorities. You do not want to be like the mom who stated, “Being dragged around Seattle by a family still in denial about the post-exertional fatigue still brings tears to my eyes.

There were a few warnings people offered to me. Flying makes some people with CFS very ill, while extended driving may bother others. Hotel rooms are fine for many, but the fumes from cleaning supplies may set off symptoms in people with Multiple Chemical Sensitivities. Still others warned of not over planning, as the setbacks may be more than you bargained for. This is why it is important to talk to your child and see if your expectations match theirs. My children know there is a price to all activities, but they are the judges of how much they want to pay. The memories are often worth more to them than the setbacks they will most likely suffer.

With all this in mind, I say, stop worrying and plan that day or week away. In my family CFS made us cancel our plans to take the family to DisneyWorld 4 years ago. As the kids got older they kept asking when we were going. We kept worrying that the trip would be too much with CFS in our family. But we finally decided to stop being scared and start being realistic. We chose a time of year that is best for our kids which is early Oct. My husband arranged to get off of work and the kids out of school. We will fly, not drive, and we’ll stay right at the Disney Resort. We plan to rent a car so that our daughter can get back to the room quickly and frequently if needed. She’ll have her wheelchair, which will guarantee us shorter waits in the lines and we are already planning for lots of downtime, and lots more relaxed time than most that visit Disney receive. Our kids are thrilled, and we are optimistic that with careful and realistic planning our vacation of a lifetime, will be a success. If you have any tips for us though, please share them with me at CFS-DSBELL@juno.com.

Jean said it all in her article in this issue. You can’t let CFS stop you from taking family vacations. It is the one high point in her family’s memories. I want my family to have those memories. Relaxed summers by the pool, and the cottage and the promised trip to the Magic Wonderland- DisneyWorld! CFS can rob my children of many things but I will not let it rob them of vacation memories as well.

Chronic Fatigue vs. Chronic Fatigue Syndrome

Fatigue refers to a sensation of exhaustion during or after usual daily activities, or a lack of energy to begin these activities. Most people have fatigue at one time or another in their lives. Fatigue may result from exertion, lack of sleep, or illnesses such as colds. Fatigue is not extreme or persistent. Instead, it generally goes away after getting more rest or recovering from a cold. Chronic fatigue, however, occurs when symptoms of exhaustion or lack of energy last over 6 months.

Chronic Fatigue Syndrome (CFS) is the medical name for a condition of extreme and persistent fatigue. To have a diagnosis of chronic fatigue syndrome (CFS), a patient must meet the following two criteria: 1) have severe chronic fatigue for 6 months or longer with other known medical conditions excluded by clinical diagnosis, and 2) at the same time, have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multijoint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and discomfort after physical activity that lasts more than 24 hours. The symptoms must have persisted or recurred during 6 or more consecutive months and must not have predated the fatigue. When there is no apparent explanation or cause of fatigue, such as a disease, a diagnosis of CFS is given. Additional information on chronic fatigue syndrome is available on the Web at www4.od.nih.gov/orwh/CFS-newhome.html and in the resource section at the end of this paper.

The following information covers chronic fatigue-not CFS-as a symptom of many diseases of the skin, muscles, and joints.

Chronic Fatigue: A Symptom of Many Diseases

Chronic fatigue is a symptom of many diseases that fall under the NIAMS mission, such as rheumatoid arthritis, fibromyalgia, and lupus. Although the cause of chronic fatigue is unknown, infection, hormone levels, and stress are believed to play a role in its symptoms. Chronic fatigue often results from sleep disturbance, usually insomnia, in combination with chronic pain and depression. Stress, physical inactivity, poor diet, and medications may also contribute to chronic fatigue. Social and cultural factors are also believed to play a role in chronic fatigue symptoms. People with mobility-limiting disorders often experience chronic fatigue. Regardless of the cause, chronic fatigue has a major impact on day-to-day functioning and quality of life.

Talking to Your Doctor About Chronic Fatigue

If you think you may be struggling with chronic fatigue, it is important to discuss your symptoms with your doctor. Symptoms such as anxiety, depression, insomnia, and pain are particularly important to discuss. It is also important to tell your doctor about any medications you are taking, including dietary supplements and alternative and complementary treatments, because some medications can exaggerate the symptoms listed above. For example, stimulants (such as caffeine) as well as corticosteroids may cause sleep disturbances. Your doctor can provide guidance on what medications and interventions may restore your sleep, as well as advice on medications to avoid. It is also important to discuss chronic pain symptoms with your doctor because chronic pain often leads to sleep difficulties, which in turn leads to chronic fatigue. Your doctor may order laboratory tests to determine what organ(s) may be involved in causing chronic fatigue.

Your doctor may recommend self-management strategies to handle your fatigue. For example, the Arthritis Self-Help Course (developed by the Arthritis Foundation) is an effective way to reduce many symptoms of arthritis, including fatigue. Maintaining a healthy weight and participating in regular exercise may also help reduce symptoms of fatigue.

Why is Basic Research Important to Understanding Fatigue?

Basic research has improved our understanding of what factors – both within and outside the body – trigger the disease process, and is important to understanding fatigue. It seeks to discover how systems work and to develop a knowledge base that scientists can use to achieve practical goals, such as treatments or cures for diseases. By providing this new knowledge, basic biomedical research, such as that supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), forms the foundation for advances in the diagnosis, treatment, and prevention of diseases.

Why are Clinical and Behavioral Research Important to Understanding Fatigue?

Clinical and behavioral research helps scientists to understand health and disease in humans. Improved understanding of health and disease often allows scientists to translate research findings into improved patient care. Clinical research includes clinical trials, behavioral research, health services research, epidemiology (where and how often a disease appears), translational research (which moves basic advances into the clinic), and community-based research.

Clinical trials allow scientists to test interventions designed to prevent, treat, or cure disease. For example, NIAMS-funded researchers are following a set of lupus patients from three well-defined ethnic groups-Hispanic, African American and Caucasian-as part of the LUpus in MInorities: NAture versus Nurture (LUMINA) study. So far, researchers have found that a variety of factors contribute to increased fatigue in lupus patients. These factors include older age, Caucasian ethnicity, lack of health insurance, inadequate coping strategies, higher degree of disease activity, helplessness, and pain. By understanding these factors, researchers hope to design therapies aimed at overcoming this common and often disabling symptom. Researchers also hope to uncover how and why fatigue occurs in certain individuals. You can learn more about this trial and other clinical trials by going to the Web site www.clinicaltrials.gov.

Behavioral research is designed to further our understanding of behavioral functioning and provide knowledge needed for better prediction, prevention, and control of diseases. The NIAMS currently supports a clinical trial designed to test cognitive-behavioral therapy as a treatment for insomnia in fibromyalgia patients. Researchers hope the trial results will confirm the usefulness of cognitive-behavioral therapy to reduce sleep disturbances, daytime pain, and fatigue. Cognitive-behavioral therapy combines cognitive therapy, which is designed to change or eliminate thought patterns that contribute to the person’s symptoms, and behavioral therapy, which aims to help the person change his or her behavior. The NIAMS is also interested in the use of cognitive-behavioral therapy for pain management in other rheumatic diseases, as well as in low back pain.

Clinical and behavioral research, such as the studies described above, have the potential to improve public health and enhance quality of life. Since it is impossible to know with certainty which area of research will produce the next important discovery, the community of science, of which NIAMS is a part, has to be open to all ideas. Discoveries can come from research funded in a variety of areas, across a wide range of scientific disciplines.

Current and Planned Initiatives

Self-Management Strategies Across Chronic Diseases-Program Announcement (June 2000). This multi-institute Program Announcement (PA) recognizes that self-management strategies have the potential to reduce symptoms of fatigue for people with chronic diseases. It extends current research to test the effectiveness of self-management interventions. Developing standard approaches or best practices to self-management is a major goal. Examples of approaches include cognitive strategies, social support, improving self-efficacy, and coping skills.

Physical Activity and Obesity Across Chronic Diseases-Program Announcement (November 2000). NIAMS and six other NIH components issued this PA as part of a trans-NIH Obesity Initiative, which includes approaches to obesity prevention and the neuroendocrinology of obesity. Obesity, physical activity, and energy level are interrelated and are thought to play a role in the development of fatigue. Studies will include examining the quality-of-life benefits of physical activity, which may include reducing fatigue.

Social and Cultural Dimensions of Health-Program Announcement (December 2001). NIAMS joined several other NIH components in issuing this PA to stimulate research in these areas. Some experts believe that fatigue may be influenced by social and cultural factors. By clarifying the relationship between social and cultural factors and health and illness, the role of fatigue may be uncovered. The announcement was based on recommendations submitted to the National Institutes of Health (NIH) in conjunction with the 2000 conference, “Toward Higher Levels of Analysis: Progress and Promise in Research on Social and Cultural Dimensions of Health,” held in Bethesda, Maryland.

Increasing Quality of Life in Mobility Disorders-Program Announcement (May 2002). Recognizing that pain, fatigue, and depression are common symptoms for persons with limited mobility, this multi-institute PA seeks to stimulate research that will improve quality of life for people with mobility disorders. It focuses on improvement by managing the physical symptoms. Possible project topics are identifying ways to improve life quality and psychosocial adjustment, and determining factors that contribute to quality of life and positive outcomes for individuals with mobility disorders.

Mind-Body Interactions and Health: Research Infrastructure and Exploratory Development Programs-Requests for Applications (January 2003). The NIAMS and 14 other NIH components issued two requests for applications (RFAs) to support and advance research to improve the understanding of mind-body interactions and health. By promoting collaboration among investigators conducting health-related mind-body research throughout the United States, these RFAs will stimulate innovative coordinated approaches to research questions. The NIAMS is particularly interested in understanding the relationship between stress and health consequences for people with arthritis, musculoskeletal disorders, and skin diseases.

Office of Communications and Public Liaison
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institute of Health
Bldg. 31, Room 4C02
31 Center Dr. – MSC 2350
Bethesda, MD 20892-2350
Phone: (301) 496-8190
Fax: (301) 480-2814

Article reproduced from The Pediatric Network

Many parents probably feel this way, especially if they have spent this past year striving to get their child the services they need to succeed in school. I admit that I am one of those parents. We have just recently been able to secure our 3rd grader the services under the educational plan that will best meet her needs now and in the future. It was an uphill struggle to convince the school that her academic needs could be better met under an IEP than under her 504 plan. I will not go into all of the ramifications of these 2 educational options at this time. But if you have questions on what your child’s options are in this area, please refer to the references at the end of this article (1) or email me at CFS-DSBELL@juno.com with specific concerns.

One thing my husband and I like to do each spring is to look ahead to the coming school year with a best case/worst case scenario in mind. This is the time of year when the school personnel are making up class lists and schedules for the coming year. It is far easier to honor a request for a specific teacher or teachers at this time of year, than to try to rearrange things in the fall. Let me give you an idea of how we did this when our son was in Middle School.

We first looked at all of the subjects that he would be required to take and the possible electives for the coming year. We then looked at the master schedule that the school had planned for the coming year. We considered that the most important classes he would need would be Science, Math, then English and Social Studies. We then discussed that his best time for consistent attendance was after 10 AM. With this in mind we built a possible schedule listed below.

8:00   Study Hall 8:40   Art 9:20   Music 10:00  English 10:40  Math 11:00  Science 11:40  Lunch 12:20  Social Studies 1:00   Study Skills/Computer Lab 1:40   Study Hall/PE 2:20   Dismissal

We began with his minimum of 1 class at school to a maximum full schedule. By requesting his most important classes (Math, Science) at his optimum time he was able to get in for at least one of them all year. During his good months he was able to make it from English through Social Studies. Sometimes I would bring him home for lunch, other times he stayed at school.

The 2nd year we did this we were able to arrange this full schedule for him and he tolerated it for the first 10 weeks, before we had to go to a shortened day. This plan of outlining options in the spring, along with teachers who are the most accommodating really has helped both of our children to be successful. When we first requested to talk to the counselor about this, we explained that we knew our requests could not be guaranteed at this time, but we just wanted to have an opportunity to voice our ideas. If the school personnel feel that you have faith in them to do the best that they can for your child, and that you are only coming in to share ideas, they may be more willing to listen and to brainstorm solutions with you.

When you take the time at this point in the year to start thinking ahead, and share your ideas with the school about possible scheduling arrangements for the fall, and you have an accommodation plan in place, you can relax a bit. You can ease your mind that things are as set as they can be for the next schoolyear, and enjoy your vacation. Near the end of the summer we contact the school again to let them know how our child is doing, and what to expect from them when the year begins. Sometimes they plan to start out full-days, and other times an amended day is needed right off. This is a good time to share any notes from your child’s doctor on any needed accommodations, such as a shortened day, home tutoring, or Physical Education changes.

I realize that these ideas in the article may not work for all of you. I would love to hear new ideas and solutions that you have found. It is our hope to discuss the options surrounding homeschooling in a future issue of the Lyndonville News. If you have experience or opinions on this option, please write to us at cfs-dsbell@juno.com.

For more information on these educational programs and your child’s right to a Free and Appropriate Public Education check out these references below:

• A PARENTS’ GUIDE TO CFIDS: Being an advocate for your child with Chronic Fatigue Immune Dysfunction Syndrome, by Bell, Robinson, Pollard, Robinson, Floyd. Haworth Press, 1999.
• 3 good web sites on education:
  • NICHCY- National Information Center for Children and Youth with Disabilities
  • HEATH- National Clearinghouse for People with Disabilities Pursuing Education or Training After High School
  • Wrights Law- A great informational web site that also publishes a free on line newsletter on special Ed laws
• (There are numerous other web sites and resources for you. This will get you started.)

I often find myself talking to other parents of children with CFS about plans they have put into place for their child’s education. Usually it is the case that I am making suggestions of modifications and accommodations that we have tried or heard of to assist the parent in enhancing their child’s educational plan. But sometimes I have parents share ideas with me that leave me feeling that this is an excellent idea and I need to pass this one on. So that is what this month’s column will do. I am passing on a few good ideas of plans that are in place in some schools in the US that may help you to jumpstart a new approach for your child’s education. Please understand that while a program may work very well for one student it may not be an option for another. Not only do the regulations vary from State to State on what is required for a High School Diploma, but also it varies within each state, District to District. It has been the case in some instances, however, that an understanding and supportive parent has presented an idea to their district and because it was well thought out and doable it was accepted as a consideration for the child in that district. Just because it has never been done before, does not mean it can not be done now.

The first idea was shared with me last January in Seattle at the AACFS Conference. I was given a very interesting brochure from a mom of a high school boy with CFS who is earning part of his credits from a “Contract Studies Program.” This is an independent studies program of the Bainbridge Island School District near Seattle. As the brochure states, “The Contract Studies Program is a personalized, individualized academic program supporting students in achieving their high school diploma. Central to this mission is establishing strong academic standards that meet the Bainbridge Island School District’s graduation requirements.” The program is used in grades 6-12 and involves an individualized learning plan where parents accept a central role in coordinating the daily operations of the plan. The school staff facilitates and evaluates the learning components of the plan and the student meets on a weekly basis with the staff to share progress and the time spent in learning. An advisory committee reviews the work to assure that it complies with the District’s curriculum framework. Grading is done on a pass or no credit basis. The student who introduced me to this program was using it for his Physical Education Requirement. His mother stated that he was able to count short walks out in front of their home as a PE activity under the Contract Studies Program and many normal every day activities were included. I have talked to other parents who have used programs similar to this to help their child to earn credit in classes such as art, music, and computer skills. With a supportive school system it seems that there are many ways a program like this could be used. The brochure states that for more information on this program you can email Catherine Camp, Administrator for Alternative Programs at ccamp@bainbridge.wednet.edu or Penny Tyrrell, Secretary for Alternative Programs at ptyrrell@bainbridge.wednet.edu. They can also be reached at Contract Studies, 9530 NE High School Road, Bainbridge Island, WA 98110 (206)780-1646.

The second parent I talked to impressed me greatly by the amount of involvement that she and her husband had in the development of their son’s IEP. As I have said in the past it is critical to the education of our children that we, as parents, develop a positive working relationship with the personnel at school. We may grit our teeth and scream at home, but at school we need to do all we can to build bridges and to develop a rapport with the staff that encourages ongoing communication and cooperation. I have been on both sides of our love/hate relationship with schools in the past, and I can tell you that it is not always easy. There are many emotional issues for the parent and when someone appears to not care or to try to understand, our worst sides can come creeping to the surface. I have always tried to maintain a positive, respectful attitude, even when I did not feel I was being understood. But in the end we have always prevailed. We have stuck by our requests and have been very determined at times to have our needs addressed, but we have tried to do so without antagonizing anyone. I cannot say enough about how important this is. To be your child’s advocate is the most important role you will take on in this illness; their advocate at school, with doctors, with family, in the world. And if we do our job well, we will prepare our child to go into the world better prepared to be a successful advocate on their own behalf when the need arises. In reading the Individualized Educational Plan that follows I could see two parents who excelled as their son’s advocate. They had learned the laws and knew their son’s rights. They presented his educational needs in a way that made the teachers truly understand how his condition impacted his education and what the school could do to accommodate for his limitations. Now on to this boy’s IEP and the areas I felt well addressed and worth sharing.

First off I noted the length of the IEP. It is about 30 pages long using standard forms to check off things. If you look at IEPs from different districts, you may find one is a couple of pages and another is a book. Our district’s run about 4-5 pages and keep things brief. They offer the same protections, but are just written up differently, so do not worry if your district is like ours. As long as the team has addressed all the parts of the IEP that is what matters.

In the aforementioned IEP 2 pages of background were included with teacher/tutor comments. In short paragraphs this boy’s progress was outlined for the year, including his learning styles and how the illness impacted on his learning. I found this a remarkable and easy way to share with the teachers how this child’s education is impacted by CFS. For Example one section notes, “John has a strong innate ability. The tutor reported that John does not like completing alternate projects because he finds it difficult to sit up for extended periods of time. The tutor found concentration to be his greatest weakness. During a week that John was not feeling well, she tutored him approximately 5-6 hours. During a good week when his energy level was better, she tutored him approximately 10-12 hours. Input from John’s Grade 9 teachers describe John as alert and an active participate in class discussion when present on “good days.” On “bad days” the teachers stated that he often put his head down on his desk. Subtle cues and teacher movement around the classroom were found to be helpful to allow him to stay on task. Attendance for the previous school year varied from term to term and from class to class.”

On a separate page general information was shared beginning with a “good days” vs. “bad days” list. It states “The tutor reports that on a good day John is able to concentrate better, produce some written work, ask appropriate questions related to the material and work for approximately 2 hours with one to one instruction (while lying on his back 75% of the time). John’s tutor reports that the following accommodations have been most effective on good days in the home tutoring environment: allow John to lie down, scribe, cues to keep him on task, condense material, open book tests, outlines, multiple sessions for tests. Following on this page were sections on Course Communication and how the work will be exchanged, and issues of Confidentiality as to John’s health status, and The Role of the Tutor are outlined as to the type of contact and how often she will communicate with Special Education Teacher, classroom teachers and the Education Consultant. The final category deals with the testing and teaching modifications and accommodations and outlines why such things are needed.

At this point you may be saying that this IEP shares a great deal of personal information about the student, in terms of health, specific learning issues etc. Some schools may prefer to keep some of this information out of the IEP, and may even refuse to have it in there. I am just sharing with you the way this particular school has done it. However if your school is like mine, a much shorter IEP will be found. This too has it’s benefits as it is easier for a teacher to review and see at a glance what is needed. A long detailed document may not receive the attention a shorter one may. But I still like John’s IEP because I feel it makes this child’s learning styles and habits a matter of the academic record. It makes it easier for a teacher or educator to pick up this IEP and to get a handle on why John needs these accommodations or modifications. In my opinion it would ease the task of the parent to continually need to be reeducating the teachers and staff on the impact of this illness on the child and the necessity for implementing the IEP. John’s IEP continues to outline what modification is requested with a personal line on why it is needed. I personally LOVE this. As a parent I often find myself justifying areas of the IEP and explaining why parts are in there that may not be needed in Sept, but will be necessary come January. I plan to write up an addendum to my daughter’s IEP that will include the information noted above on her personal learning characteristics and styles. I also plan to explain how the illness impacts her education and how and why we have accommodated for these areas.

John’s IEP also does a fantastic job outlining the goals and objectives course by course. The IEP team copied the regular course requirements and made notations as to modifications for John such as omit requirement 5 & 6. The goals and objectives in our daughter’s IEP are vague and I would like to use the format of John’s IEP to amend our daughter’s.

A third parent who I am in touch with via email offers a new perspective on tutoring. She suggests the concept of teaching by telephone. In her experience telephone teaching with brief sessions (making sure all systems are established like volume control and that the teacher understands the condition, etc) really WORKS! She states it is an option to consider in drastic cases. They have used this option with their daughter for the times they had previously had to cancel the tutor but later found their child feeling better. I also heard of an instance where a child had no tutor and a teacher/friend tutored her long distance over the phone until a real in home tutor could be found. The internet and email or instance messaging are other tools that our children may be quite comfortable with, and can adapt to use with teaching/homework. While these are alternatives to the normal one on one situation that tutoring provides I do not advocate that these be substitutes for this personal one on one contact. I guess the suggestion is to look outside the mold. If you have no tutor at all and the school is dragging their feet on providing you with one then an alternative approach is better than doing nothing. What works for one, may not work at all for another child. But if we are all willing to look at our individual child’s strengths and weaknesses and to be creative, we may be able to come up with some new innovative ways to approach teaching, tutoring and homework.

This past year I also became aware of programs that are taught on line via computer that can help a child earn High School and College credits. As the online world spirals in our life there will be more and more options available to our children via computer if we are only willing to go searching for the programs that may assist them in their learning.

Sometimes as desperately as we want a public education to work out, it is just more headaches and heartaches than we can deal with. Sometimes there is so much animosity with the school, or the child is so ill, that tutoring or school attendance on a regular basis is just not possible. Or there may be an ill parent in the home and the role of advocating for the child with the school becomes an insurmountable task. In these instances some parents have opted for home-schooling curriculums. As one Mom of an 11 year old wrote to me, “I miss that exciting beginning of the new school year but I’m hoping that she won’t have to start with high hopes and fail as she has every year since 2nd grade. She’s sleeping nights and up days now but we don’t know what she’ll be able to manage. Being home is so much easier for her than going out, so maybe she’ll be able to do a little more this way. We’ve got a Waldorf home-schooling curriculum, which I’m adapting for her to reduce the amount of reading and writing. I’m organizing it into short packets that she can do at her own pace and be able to finish. The school never got the idea of what to do with her. She said they were just waiting for her to snap out of it. She had a terrific home tutor for 3rd and 4th grade but she left. The one last year was not so good. We are not sure how the peer thing would work out at this stage either now that she is in Middle School. The kids seem to be less accepting when she does see them. She can see kids in a home-schooling group if she feels up to it. ”

This mom also noted in another note “I’ve noticed that I am getting a sense of when she can and cannot work. It is as though a window is open for a time and then abruptly closes and no more can go in. She can now let me know this is happening, and as long as I don’t insist she go on, we are ok. I can feel the difference as I work with her. The emphasis in school is to get the kids to do more and more work, but she can’t do this yet. It reminds me of PT for many PWCs it’s not a matter of increasing activity level but just doing what they can do without exhausting themselves. The other thing I’ve noticed is that she needs to learn in the ways that come most naturally to her. If she was feeling better, she would need to accommodate to the way things are presented but she just can’t be that mentally flexible right now. For her, this means I have to focus on concepts and let her verbalize her ideas and fit new information into what she is thinking about. Since I tend to be a detail person, this is quite a challenge. ”

I guess the bottom line of all these ideas is that, as parents, we need to really fine-tune our efforts as our child’s advocates. We need to go the extra mile to really figure out what it is that our child needs to excel. Do they need an extra accommodation? Do they need a different approach to teaching available to them? And as parents do we know the answers? Do we know and understand our child’s rights as they pertain to their education? Do we know their best learning styles or habits? Do they study better in a supine position or at a desk in the same place each day? Do they need moderate/natural lighting? Do they do better when they are read to as opposed to reading material alone? Are there things that can be done to their environment that helps them to be more productive? My guess is that most parents do not know the answers to all these questions. I encourage you to not only talk to the school and your child’s teachers and tutors, but talk to your child. Ask him/her to tell you how they learn best. What helps, what hinders and what can you do to make things easier for them. I have found I learn much more from listening to my child, than by observing her. When asked she can be extremely articulate in explaining how she learns best and roadblocks that make things more difficult. I also find I need to write down what she says so that I can better present it to the teachers when the time arises. I do not have the illness, and as good days melt into bad and back to mediocre, I forget what she said. I for one am going to take the suggestion from this column’s IEP of John’s and put in writing many aspects of my daughter’s learning strengths and learning styles. I hope you too have found some ideas to enhance your child’s educational plan and have strengthened your resolve to assist your school in developing and implementing the best plan possible.

He is doing remarkable!! Should I call it remission or recovery? I do not know, because that is all it is with CFS; a little known and a lot unknown. In Dr. Bell’s mind it is recovery and lately I too am leaning in that direction. Following our trip to Syracuse we decided to give florinef and salt another try. It took 6 months to really see an improvement, and we couldn’t believe it when it happened. In the beginning of 8th grade he was able to attend ¾ of the day at school, (up from 1 hour at most in 7th grade.) As the fall progressed we waited as we did every Fall for the crash. BUT it didn’t come. He dropped back to attending school for only a half day due to a decline in his health, but not a real crash. He had his ups and downs and by spring was up to almost full-days. He was never as sick as he had been the previous year. We were elated!

By the spring of 8th grade he was contemplating trying out for the summer baseball team. I was scared. What if it sent him into a spiral downhill. With Dr. Bell’s encouragement I relented and he tried out, and made the team. And he gave it 110% and did great. Not only did he play, he was a starter as a first baseman! The following fall he would enter 9th grade – High School! We were so worried that he wouldn’t be able to handle the extra pressure, and the classwork. But he wanted to try. He wanted to just start out with a full day, something he had not attempted in years. I couldn’t imagine that he could be up by 6 AM each day and attend for an entire day. But we had to let him try, it was his life. And we did.

That was 1 ½ years ago, and he was right. Aside from a few minor setbacks last year, never lasting more than 3-4 days, he has remained healthy and symptom free. Last year there were times I worried, times he would have a brief recurrence and be down and out. But on the evening of the 2nd to 3rd day he would pop up, get his homework done and be back to school. We noticed a cycle in 9th grade of this occurring every 3-4 weeks, but he ALWAYS bounced back stronger than ever. He made the JV baseball squad last year, and played ball all summer as a starter. By the beginning of 10th grade he was ready to go off all his medicines. That meant no more florinef. I was scared to death. I knew that Dr. Bell supported this path, but had offered only respect of my fears of this decision. We again let him follow his heart, and since last August he has been off all medicines. He has had NO setbacks. He got the flu for 3 days in Dec. but it was really the flu. The normal one that you actually recover from and are back to normal after 3 days. He got a bad strep infection last month and I thought “this is it!” Even Dr. Bell was expecting a bit of a setback, but it didn’t happen. He recovered as fast or faster than any other healthy teen. And he is back to a heavy baseball practice schedule.

And Academically? He is one of the tops in his class! This boy who had dropped to under grade level in Math and reading in the 6th grade, is now back at his peak in 10th grade and scoring ahead of his classmates in these same areas. His teachers praise his efforts and his attitude. And he beams with the ease that he seems to manage these accomplishments.

Socially he has many friends, and talents. He is still shy, and always will be, but he is trying new things and has a self-confidence that I don’t see in most of his friends. He has battled the dragon and won.

I have been getting a lot of calls from parents of children with CFS, lately. While I share their feelings of parenting a child with CFS, as I am still in the trenches with my 9-year-old’s battle with this illness, I also offer them hope by sharing the story of my son’s “recovery.” I still get goosebumps when I say that word, recovery. And maybe it is the other “R” word, remission. Either way, our boy, our oldest child who was struck severely ill after a tonsillectomy and chicken pox in 4th grade is healthy. Recovery- Remission- does it really matter what we call it? I will never stop worrying about him when he gets a sore throat or a stomachache. I will always pray when he seems more tired than usual or a headache isn’t abated with the usual Tylenol. And I will pray that he never has to tell me that he is crashing. But if I do get that call, I will thank God for every day he has had of blessed good health.

My hope, my prayer for all of our children is a recovery/remission like our son’s. May they all have their day when the world is once again theirs to rule!

From watching our children, and working closely with Dr. David Bell, we have learned many things about coping and living with this illness when it invades your family. There are probably as many ways to deal with this issue as there are families dealing with CFIDS. If our experiences offer any ideas for parenting your children, then I am happy to have shared our journey.

When our son first began showing signs of CFIDS we didn’t know what to do. Along with the many medical questions and school issues that came to mind there was also the question of how to handle his activity. He had always been very active in sports and the outdoors. Should we now limit what he was allowed to do when he felt well? Should we enforce a set activity limitation to try to ward off the bad spells that usually followed overexertion? We didn’t know what to do, so we turned to Dr. Bell for his opinions. He encouraged us to treat our son as normally as possible. If he didn’t feel well, then treat the symptoms and offer him all the support and care he needed to get through that time. But on the days that he felt he could tolerate more vigorous activities, he suggested that we encourage him to do so.

In our experience, we found that when we tried to force limitations on our two children, they only resented us for it. So instead we encouraged them to monitor their own activity. They learned to take breaks when they felt the need, to turn down invitations to outings they knew they could not tolerate, and to also partake in other things that were worth the price they might have to pay later on. We always support them in these decisions, which is sometimes hard to do. They are the ones that have to learn to listen to their bodies, and experience is the best teacher. But there are also days that they do overextend themselves, and often the payback is a disappointing setback.

When I have discussed this approach to activity with my son and daughter they have both said that they do not want us imposing limitations on them. When we have done this, it made them feel worse than they already did. My daughter once told me that while she is feeling good, it is like she doesn’t have CFIDS. She is able to just be a normal kid for a while, and she needs that time, even if it is only a few hours. My son agreed that when he was ill, it was hard enough to have to give up the time to illness when the symptoms flared up. But he did not want to limit his activity too much and miss out, on those rare opportunities when he was feeling well, on just being a kid.

Do not misunderstand me on this issue. We do not take a totally back-seat approach, and we are not beyond worrying about our decisions. This past year our son is back to normal activity with school and sports. We pray all the time that as he continues to add activities, his body stays on the road to recovery. So far, it has. But with our daughter, if we feel that she is setting herself up for a setback, we gently remind her what may happen if she engages in the planned activity. We suggest ways that she can keep her plans without overdoing it. We sit down and talk together when she is concerned about what she should do. Last night was one such time. She had felt terrible in the morning but felt better later in the day. She desperately wanted to play baseball with her brother and sister. But she didn’t want another major setback today. I could have just told her she couldn’t play, but that would have only had her resenting me. So we discussed what special things we could do if she chose to stay indoors with me. Nothing was as good as being outdoors.

It’s the child’s choice

“OK, then,” I said, “Go out and play for a little bit knowing you will probably pay the price later. You need to decide which is worse, the price of not feeling well, or the price of staying in mad all night because you didn’t go out and play.” She thought it over, and decided that she could go out and bat and have someone else run the bases. She did, she loved it, and she had no setbacks because of it. So we try as much as possible to help her out and, in the end, we let her know that these decisions are hers to make, and we support her in whatever she decides.

As a parent, this has been one of the hardest things for me to do-to just stand back and watch my children race around and be active knowing how they may wind up feeling as a result. However, this attitude has helped them to dispel the “invalid” mindset that some people with this illness can develop. It offers them a perspective on their life that has more hope and less disruption. I think it made the years of illness easier for my son, and disrupted his life less, than if we’d imposed more limits. He has memories of doing normal things during his worst years, and those are the only things he chooses to remember. I am so grateful he has them. I pray my daughter will be able to look back on her childhood and be able to pull out some wonderful memories of times she felt like any other kid.

Encouraging school attendance

Another issue that is very difficult to undertake is the issue of school. Some children with CFIDS have been able to stay in school for full days with a few modifications, while others have required home tutoring or chosen to homeschool, as leaving the house was not possible due to the severity of their symptoms. Dr. Bell encourages attendance at school whenever possible in an attempt to minimize the disruption of the normal social development of the growing child and adolescent. For this reason, we have always encouraged our children to attend whatever amount of school they could tolerate without setbacks. It may be a 40-minute science class at the intermediate level, or a 30-minute snack break and teacher read-aloud at the elementary level, but at least it gets our children into school to be with their peers.

I asked my son, who is now in the ninth grade, how he felt about the choices we made for him in relation to school. He remembers the times he made it to school. He said that while he knows he was homebound for months at a time, his memories are of the days that he did manage to get to school to be with his friends. By touching base a little bit every day when he was able, he minimized the social disruption of feeling like a total outsider. When he began to tolerate nearly normal activity after years of very limited social activity, he went through the developmental levels very rapidly. As a 14-year-old, he made friends with boys several years younger than he and rapidly grew out of these friendships until he was most comfortable with others his own age. It was fascinating for my husband and me to watch as he fast-forwarded through four years of socializing-the giggles, to the sports, to the times just visiting with friends-in four short months. He picked up where he left off when CFIDS struck and ended where he would have been had CFIDS not invaded his childhood.

Trust your child

As we sit back now and look at our children, we are happy that we have been able to assist them in the challenges they have faced in coping with this illness. Because they have been given control of how to utilize their limited energy, they have been able to maintain control of an important part of their life. This has helped them in small ways to feel normal. We hope and pray that the day soon comes that our daughter will enjoy the same level of recovery that our son is experiencing and that his recovery lasts. We hope that all of you who are struggling with these same decisions for your child may find peace in knowing you are not alone, and that these are difficult choices to make. Trust in your child, and have faith that you are doing the best that you can.

Depending on the severity of your child’s symptoms their social contact will be affected in different ways. A child who is able to attend a full day of school will find less of an impact on their socialization than the youngster who is homebound for most of the time. However, even these children will face struggles. As we discuss at length in our new book, “A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome” socialization is not an all or nothing thing. For the child who is able to attend school, their friends may see them as healthy. It is difficult for them to explain why they can’t engage in all the activities that their friends do. When they are inconsistent about keeping plans their friends may become less tolerant of maintaining the contact. The adolescent in this situation may be uncomfortable explaining the reasons behind their inconsistent behavior and prefer to be labeled as not dependable, as opposed to ill. Having to explain an illness such as CFS to their peers, and possibly facing rejection or disbelief, is worse than pretending that they are healthy and just unreliable. These children would rather be thought of as inconsiderate than as different. As parents we need to be cognizant of this behavior. We must support our children’s decision to not share all the ins and outs of their illness but also help them to monitor their activity so they do not wind up overdoing it and push themselves into a relapse.

Do not lose hope though. These children can be helped along the path to friendships within the confines of their activity limitations. It is important to respect your child’s wishes on how to handle telling others of his or her health status. If your child chooses to not disclose their health status to their classmates, then they should not be forced to do so, nor should you do it for them. They must come to terms with their limitations in their own way, in their own time. You can assist them in this journey by helping them to come to terms with what they can do. There may be one or two close friends that you may encourage your child to share with in a more open fashion. My children preferred that I talk to the neighbors parents about their limitations so that they didn’t have to explain why they had to quit a ball game in the middle, or go inside to rest when the game was just heating up. By talking to the parents, they could talk to their children, and it made it easier for my child to be understood without having to explain it himself. This worked best when he was younger, and also with close friends and family. As he grew older he learned to share a few details of his illness with those very close to him. He had fewer friends than he had before illness, but they were more understanding and tolerant of his limitations.

If your child is very limited in what he or she can do and therefore does not get out of the house very frequently then you may need to take a more active role in helping them to achieve some social contact. When my son was homebound and unable to tolerate more than about 4 hours of activity a day, we arranged to have his best friend walk over to our house every Tuesday after school for a short visit. It gave him something to look forward to each week. He could catch up on what was happening at school, play some music, or just sit and watch TV together. It gave him something to look forward to each week. It was a new face in his life where he was getting pretty tired of having only me to look at all day long. We found that on these afternoons his mood improved, if only slightly, and it helped to make him feel less isolated and cut off from his world. When he was able to manage it we encouraged him to engage in activities with his friends such as a couple of hours spent at the mall, or an afternoon matinee. Other activities might include having a friend over to play on the computer, or shoot some hoops in the driveway. We always encouraged any short spurts of activity that would put him in contact with his friends. When his friends’ parents asked what he could do, I would explain it to them. By educating the parents ahead of time when his friends did come by, they knew that instead of 2 hours of playing football it was more likely going to be a ½ hour of computer games, or TV videos. When we invited friends over for a specific activity, it seemed to make it easier all the way around.

When my daughter is doing pretty well, and is able to get up and do a bit more we encourage her to make plans with her friends, new and old. We plan things we know she can tolerate, like renting a movie they can enjoy, or a 1-2 hour play date to swim in our pool and relax on the deck and play with Barbie dolls. I try to plan an ending time to these play dates so she doesn’t overdo it. I would rather call a parent to extend a successful afternoon visit, than have to cut a play date short if she can not tolerate her friend’s company for another minute.

When my children have spent a great deal of time at home they always appreciate any opportunity to get out of the house. There are many things that children can tolerate with slight modifications. Some teens love to golf if they can rent a golf cart to ride in. Others may enjoy playing basketball with frequent rest breaks. They do not always need time out with friends, but just time out of the house. Assisting your child to develop talents that they may enjoy is another way to get them involved in things out of the house. My daughter takes piano lessons just down the street. Another child may enjoy private art lessons, or a computer class. By assisting my daughter to develop talents of her own, it gives her things that she can excel in and can feel the sense of pride that goes with the accomplishment. When my daughter’s friends talk of their dance and gymnastics classes, she can share of her piano accomplishments. She may only make one lesson every few weeks, but it gives her something to work towards, and to feel good about.

If your child is not up to doing things with friends, maybe they may enjoy talking to them on the phone. Some children find great enjoyment from email friendships. There are a wealth of sites and groups on the Internet for kids with CFS and I encourage you to check them out, if you haven’t already. One great place to start is the YPWC net site at www.ypwcnet.org.

Look for places for your child to go where they may meet new friends. One teen I know found some wonderful friends from a youth group at church. She managed to connect with a few girls around her age and they got together on occasion to just crash and watch movies and eat popcorn together. Other young people have met friends at support group meetings for other children with CFS. Being able to connect with others in similar situations can be very reassuring for children who may be questioning many things themselves.

I have offered many of my ideas, and I guess the bottom line is this. All people need the contact and interaction of being with others. Encouraging contact with peers is important, but just as rewarding is the act of getting out of the house with other people. Children with CFS may not enter into the world of socialization on the same route as their peers, but they will arrive all the same. They will arrive with a self-confidence and an awareness of the world, and an understanding and sensitivity for others that may far surpass that of their friends.

“I don’t quite know how to ask this. Everything I read about children & teens with CFS gives me a picture of a calm, sleeping person who is kind and gentle, asking for and taking help from their parents, doing whatever he or she can to get well.

My experience is anything but that, and I feel like a bad parent. Is this the norm? Or, are other adolescents who are ill with CFS like my daughter? Please write something about the stages of acceptance that go along with a teen with CFIDS.”

One Young Person’s Viewpoint

Heidi Pask: Hpask@juno.com

CFS is hard on anyone, but for a teenager it’s incredibly difficult to deal with. I know I just celebrated my 20th birthday and I’ve been sick for 11 years. I went through a little bit of the “normal” teenage rebellion, drinking, smoking, etc., but the majority of my rebellion was done in ways only an ill teenager could rebel. I would argue for hours with my mother over taking medicine, even pain killers. I could be in so much pain that I was crying, but I still wouldn’t give in and take painkillers because I wanted so badly to control this disease and my life. It never worked and I always gave in and took the medicine, but it might have been 4 or 5 hours after my mom and I first started arguing about it. We would both be exhausted, but to me it was worth it because it meant that for those 4 or 5 hours I was in control of something that usually cannot be controlled.

Meds weren’t the only thing we used to argue over. I would try to deny I was even sick and go off with friends for the day and try to be “normal.” It never worked. My mom would warn me a million times before I left that I should be careful of what I did. One of the more memorable events that I did this with was a youth retreat I used to work with. The retreat started on a Friday night and went until Sunday afternoon. The people who ran the retreat were very understanding of CFS and tried to accommodate me in every way possible. They would even encourage me to rest. I never listened. I spent three days trying to keep up with “normal” teenagers. At the end of these retreats, when the “normal” teenagers were exhausted, I always felt like I was going to die. The pain would be horrible. I would sleep for 24+ hours after I came home, but I always left there with a big sense of accomplishment because for three days I pushed myself to be a normal person. Thankfully, my Mom always stuck by my side and would still take care of me even though it was something I had intentionally done to myself. I will be honest and admit that I still have these types of days although they come less frequently now and I usually don’t push quite as hard.

Overdoing has always been one of my specialties as a rebellious teen. For years people were telling me that a wheelchair would make my life easier. I refused to admit that it might help. I would go out to dinner, completely tire myself out, and spend days recuperating from a small thing. I knew that walking any distance would exhaust me, but I was too proud to use a wheelchair. I always thought wheelchairs were for the REALLY sick people and I wasn’t one of them. So I fought using one. I missed out on a lot of fun stuff that I might have been able to do had I conceded and used a wheelchair. It took until I turned 18 before I would use one. They were right. It has helped tremendously. Although I still wouldn’t say that I give in or use it quietly. I only use it when it’s absolutely necessary and usually it takes a disapproving look from my mother or a few subtle hints about what the morning after is going to be like if I don’t use it.

I also went through a period of hating school. I was a straight A student for a long time. Then, much to my mother’s dismay, I refused to do any schoolwork for two months. They did everything they could to try to convince me to do some work. In a valiant effort, my parents started taking things away from me, first the TV then the computer, then my stereo, none of it worked. They even tried bribery. I was mad at the school. It represented everything that I had lost and I wanted nothing to do with it. I truly believe that my parents could have left me alone in a room with nothing but schoolbooks and I still wouldn’t have done any work. In time I worked out my anger and understood that I could put it to good use, but I needed that time to figure it all out.

These stages might have been difficult on my parents, but I believe I needed to go through every one of them. It was all a control issue. I needed to try to have control over this disease that was so unpredictable and had moved in to try to take control of my life away from me. This disease isn’t fair. It fights dirty and it has robbed me of everything I once loved. I had to fight back and I fought back in the only ways I knew how. This so- called rebellion gave purpose to my life. It kept me alive and it kept me from giving up. If I hadn’t fought so hard, and I still have to fight hard, I wouldn’t have accomplished everything I have. I now have a 4.0 GPA and almost a full year of college completed. If I had sat back, accepted the diagnosis and approached this disease with passivity I still wouldn’t have graduated from high school and I probably would be a lot sicker than I am now. Rebellion was just a sign that I wanted things to be different. So even though your child may be rebelling against everything that has to do with CFS, don’t get frustrated and argumentative. Look at it from our point of view. We’ve lost everything that is important to a teenager and being a teenager is hard enough without the added stress of CFS.

One Parent’s Viewpoint

Mary Robinson: Cfsparent@juno.com

I don’t know what I can add to Heidi’s account of her journey to acceptance, which she is still on by the way. But I do know that this struggle for control is a big one for parents and adolescents with this illness. I experienced it with my son and now my daughter, and I talk to many parents who are caught in the unending battles with their own teens of how to handle a teen who will not listen to the adults on what they feel is best.

I guess I have a bottom line philosophy on how to deal with this, and I credit my dear friend, Jean Pollard, for giving it to me. BELIEVE in your child, and TRUST your child! In my experience these kids do not lie about how bad they are feeling. They do not lie about the fact that they can’t do any more schoolwork, at least in their eyes. The reason, as Heidi mentioned, may have more to do with control than a physical inability, but it is real. As parents we reason that if they would just push through the fatigue and headache, they could do that chapter in history. If they would break the assignments into manageable segments of 3-5 minutes each, they could finish the Math paper. But stop and think for a minute of how frustrating it must be for these kids to have to do that! As a healthy adult I would feel like giving up if every accomplishment I made was in 5-10 minute spurts between pounding headaches. I try to remember this when my daughter is saying she just can’t face that assignment.

So what am I advocating? To just give in and say they don’t have to do any work? NO, not at all. I am saying to listen to them, and believe them when they say they are in pain or they can’t think. I tell my daughter that I know it is hard, and that I won’t pretend to really understand because I can’t, I don’t have this illness. But it is my job to help her to do all that she can do, and to assist her to become all that she is capable of becoming. While understanding the incredible challenge that schoolwork brings, I offer to help come up with ways to work together to get the work done. I may read the chapters with her and search for answers together. I rewrite Math problems from the book so she can save that precious energy and I act as a scribe writing answers that she gives to me. I do whatever I can to make it manageable for her. And when she has had enough, I respect that and plan another session while praising her for whatever she has accomplished.

There were times with my son, who was ill during his early to mid teens that I really didn’t know what to do. He would say for days that he just wasn’t up to schoolwork or socializing. And my husband and I struggled about what to do. Then he would have a good day and go into overdrive to get caught up. I guess what we learned to do was to stop looking at things for today or for this week. We started to look at the big picture of what we needed to accomplish this month or this year. He needed to get out of the house when he was really not getting out much, and we could usually get him to agree to a drive for ice cream or to relatives for a short gathering. With the schoolwork when we looked at the individual assignment he was to do we would ask ourselves what the relevance was to the entire course. We found that constant and ongoing communication with his teachers was very helpful in knowing what the real bottom line was for him to pass the courses and it helped us in eliminating unnecessary assignments. I think sometimes parents don’t make the teachers realize what problems their children are really having, and so the teachers do not understand exactly how to help. And as healthy parents we may need to rely on our children to help us to understand. When I stressed that we needed the real “bottom line” curriculum, they came through. For us this helped at school and at home. We learned that a few weeks of “no schoolwork” was not the end of the world, if that is what he needed. Our son knew we were trying to understand and to help. In turn he tried to do what he could manage, when he could manage it. Some parents may need to accept that for some teens high school may take more than the customary 4 years. I think that we need to help our children to see what is attainable and possible and then help them fashion their goals so they can get there. I may be living in a glass bubble, but I believe the most important thing we can do for our children with CFS is to trust them and believe them. I think we can still be parents, encouraging them to work, setting certain limits, and help them to set and reassess their goals without giving up our trust in them.

In this column I am referring mostly to the child with severe CFS. But I believe the same holds true for moderate cases. These children may be able to do more than the severely ill child, but still their workload and ways to accomplish it will need to be adjusted. These children may enjoy time out with friends and should be encouraged to do so. This is an important part of growing up for all adolescents. But what do you do when the teen puts all their energy into socializing and none into schoolwork? That is a tough one – but it is a normal parent’s problem as well. I think one of the hardest tasks of parenting is knowing how to deal with this adolescent rebellion. It is made harder by CFS, as Heidi pointed out, for the child and the parent alike. While we need to be understanding, we also need to be the parent. It can be a monumental task sorting out what is CFS and what is just adolescence. It is a job for which there are no right or wrong answers. I look deep into my heart and ask how I would want to be treated. I try to see life from my child’s perspective, I try to listen, I do the best I can, and I struggle any way with my choices every day.

Contributing content provided by Heidi Pask.

The worry that many parents have is how will they be able to have any relationship with their child, when they are so limited in what they can do? “BEING there emotionally for your child is more important than DOING things,” one mother reminds us. Following are the ideas that they found helpful:

• Try to find people to help with household duties so you can concentrate on those things only you as a parent can do for your child, such as cuddling, reading a story, playing a simple game, and just listening to your child.
• Hire help if you can afford it: A part time au pair, full time childcare, a housekeeper, whatever you need to ease your load.
• DON’T have any hang-ups about an untidy house. Basic cleanliness and hygiene are important, but otherwise be satisfied with an untidy but child friendly house!
• Older children can help by bathing the younger ones at night and getting them ready for bed. (Don’t worry about burdening your children with your illness and be hesitant to let them help out. It is a gift you give to them in learning to be helpful, compassionate people. When you appreciate their help, you give them an opportunity to learn one of life’s important lessons, being there for others in need.)
• Several moms said that everyone had their chores. One would have to load the dishwasher, another unload, one carry the laundry down and sort it, another put it into the machine.
• For another unloading the dishwasher was made into a game. Make games out of other household chores also, so children can help you get essential work done.
• “One of the things that we tried to do was have our youngest find ways to help me. She used to carry the tray with my meal upstairs to my bed. When I had to do passive bed exercises, my husband taught her how to lift my arms. She was very good at it and took great pride in doing something that was helping mommy get well.”
• If you have family or friends who offer to help out with the kids, the housework or cooking, take them up on it.
• Try to find mothers with young children to help you out on those days when you simply cannot cope. Remember that even though you are dealing with an illness, you, just like any parent of young children, need support with childcare and time to nurture yourself.
• If typing letters is hard, you may try to arrange a correspondence with another parent who also has CFS. “We would send each other cassette tapes. I’d lie in bed and talk to her or I’d lie in bed and play her cassette letter to me. I used to feel that I was having a visit with a friend during the years when I really couldn’t go out for a coffee.”
• Put a TV/VCR in your bedroom so that you can cuddle up with your wee ones in bed and doze off while they watch movies, cartoons or quality children’s shows on tape.
• If you need to rest alone one mom suggests having your kids stay in their room while you sleep in the room next door. While this mom often felt guilty leaving them alone, she knew they were safe. When younger she told them not to answer the phone, but when older, she taught them to answer it and to say, “She can’t talk right now. Could I take a message?” Then they wrote down the message to later give to her. They still do this, and are very understanding and accepting of her fatigue.
• Nap when your kids do. Just lying down and resting can be helpful, in your room or on the couch. If your child is awake, make sure the area is safe so that if you fall asleep they can’t get into any trouble.
• Consider getting a play pen with special toys in it to put your baby in while you sleep nearby. It can really be a lifesaver if you need that nap, or need to run to the bathroom or the laundry room. If used on a regular basis, (even 10 minutes a day) the child will get used to it, and not resent it
• Try to be emotionally available to your child and if you feel terrible and are unable to be there for your child, explain that you don’t feel well and then promise some quality time at a time when you will feel better.
• Try not to dump your emotions and pain on your children, rather just say “I don’t feel well today” and leave it at that. Don’t say ” I don’t feel well, I have a headache and my legs ache so much and on and on.”
• Be CREATIVE: find ways to do things from your bed or lying down on the floor.
• Invent “gopher” games in which your child “goes for” essential objects without realizing that they are actually helping you.
• Create a play area for your child. For toddlers it may be in the corner of your room, and for older preschoolers you can trust, being alone a room near you may suffice. Wherever it is it may include a craft/activity table where your child can be occupied while you are in bed. Things to consider adding to your table (depending on the age of your child): scraps of material, glue, scissors, objects for collage, assortments of interesting pens, crayons, coloring books, lots of paper, puzzles and small games.
• Spread large pieces of plastic on the floor and let your child make potions in plastic throw away containers. Old food such as old flour, pasta, food coloring, play sand, cereal etc. can all be used to make magic potions. When the children are all done you can just pick up the plastic and discard everything. (I presume this will not work for everyone but it used to be one of the child of this parent’s favorite pastimes!)
• Buy a doll house or car garage with miniature (matchbox) cars. Have your family and friends watch garage sales for items such as the kitchen sets, or tool benches. These items can keep toddlers and preschoolers busy for hours imagining they are busy at work in the kitchen or the shop
• Build chair houses with sheets and blankets draped over chairs
• Buy storybooks with tapes and tape players that children can operate by themselves.
• Invest in a miniature trampoline that can be used indoors.
• Put a sandpit outside and let your child play in the sand while you lie on a blanket and watch.
• Play simple card games with your preschooler. Set a timer for 10 minutes and explain that when the timer goes off, you have to stop playing
• Take large pieces paper and build a “snake” in the hallway by placing the papers next to each other in a long line down the hall. Number the pieces and play a game with dice where the number on the dice tells your child which part of the snake’s body should be visited and decorated with pens or crayons.
• Draw on windows and mirrors with water-soluble pens.
• Have meals in the freezer. They may have been prepared by others or by yourself. (Consider always doubling your recipes and freezing half in serving size containers.)
• Once a week cut up raw veggies (or have someone else do it) and put them in baggies so that there are always fresh veggies and dip on hand to have with a meal. (Buy finger foods such as baby carrots, string cheese, and grapes that are all ready to eat. Have ready to eat foods in the refrigerator that your children can grab easily when they are hungry. Even preschoolers can get their own food.)
• Sometimes you may just feel too tired or too sick to make a decent meal. This mom made herself realize that cereal is a perfectly good thing for kids to eat (vitamins, milk, etc.), and they could also help themselves! Frozen pizzas, chicken pot pies, and TV dinners were easy and Macaroni and cheese was a favorite too, so all I had to do was microwave vegetables like peas or mixed vegetables. They didn’t suffer.”
• The kitchen table is a great place to color with preschoolers anytime, but especially while preparing meals. And active babies and toddlers can have fun rampaging through the pots and pans in the kitchen cupboards while you are occupied.
• If someone else is in the house to help out with bedtime have them read a bedtime story in your bed so that at least you can take part. If unable to read to your child, you can still enjoy this cuddling time while someone else reads the story.
• Protect your sleep by creating a “fun circle” in your child’s bedroom. Keep some interesting toys aside to be put in this “fun circle” once your child has fallen asleep at night. Explain to your child that when he/she wakes up in the morning he/she should play quietly in the “fun circle” until you have woken up.
• Find a therapist to share your concerns and frustrations with.
• Don’t neglect your own friendships or interests if possible
• Nurture and cultivate a sense of humor!
• Have backup plans for help if you can. Having a list of people that you can call to help with driving or running errands may really help to reduce your stress level. If one person is busy it helps to have others you can call
• If you are able to exercise, even just a little bit, an exercise bike is a great thing – and you can do it while watching TV. Short walks can also do wonders to just breathe in the fresh air and clear your head.
• NEVER overdo it. It is far more important to look after your own health so you can be there for your child.
• NEVER feel guilty for being ill, you didn’t choose this illness and your children won’t be seriously harmed by it unless they pick up on negative attitudes from you. It isn’t pleasant to have a sick parent, but it is far more detrimental to have one who feels guilty all the time.
• Never think about the long term future as it tends to make you feel completely helpless and depressed — think, “one day at a time”

As a parent with CFS you have several choices on how to deal with this illness with your children. One mom, due partly to the lack of a diagnosis, chose to hide it from her family. “To this day my children do not recall that I was ill, and when questioned they say that there has been nothing different about their life because of CFS in our family. I must have done a good job hiding the daily headaches, dizziness, exhaustion and despair. I WOULD NOT recommend “hiding the illness,” to other parents in this situation. I attribute my longterm, disabled state at least partly to the fact that I pushed myself too hard and too long in those early years, with almost no support from family and friends.”

Another parent worried, as I am sure all parents with CFS do, about the long-term affects their illness may have on their children. “Several years ago my 7 year old daughter made a cassette tape, where she talked for about 20 minutes about what it is like to be the child of a mother with CFS. She had never known a life with a healthy mother. It was so touching, I cried. She talked about how much I had improved. How she used to bring me the trays of food to my bed and how now I was able to come down for the family meal almost all of the time. She talked about how I was able to go on some outings occasionally and how happy she was to get to spend more time with me pushing me around in the wheelchair. She said that she loves her dad and loves to go places with him but how wonderful it was to get to be with me too sometimes and to all go places as a whole family. The tape showed me that she really understood my illness and my limitations and that she seemed to be well adjusted in spite of everything.

But what happens when things start happening that no one understands? What do you do when even your doctor doesn’t know what to do? Where do you turn when the pain gets greater and greater, and weird unexplainable symptoms begin to immerge that even make your doctor wonder what is going on?

Our 10-year-old, who has been ill since age 4, has had a rough year. Last November I shared a story with you about how we coped with her failing health by finding something she could be passionate about- it was llama training. While it helped her mentally we noticed that by fall her health was no different, the November factor hit hard and she went from bad to worse. On top of the usual pain in her muscles, limbs and back she began having weird jerking motions of her arms and legs, which we later learned are known as myoclonus or myoclonic jerks. She began having a newer type of chest pain that at times radiated down her left arm and nearly always felt like a crushing weight sitting on her chest. We discussed these new worrisome symptoms with Dr. Bell. When the pain went on for hours one night we went to the ER and had a chest xray and an EKG that came out normal. Her oxygen level was normal, even though breathing was difficult. We made 2 trips to the ER in December worried that something was happening with her heart or her lungs. Both times we were reassured that she was fine. The myoclonic jerks were more troubling. We underwent EEG monitoring that was normal and many other tests. Everything came back normal.

But it isn’t the tests or the results that I want to write about. It is parenting in this situation that has been at the front of my mind lately. Things change when our children get sicker. When they have trouble walking up the stairs to bed, or catching their breath, we worry. When the pain level seems to be constantly increasing, and their cognitive abilities decreasing, we start to feel like we are falling and there is no where else to turn. In the book I reviewed in this newsletter, one of the young women stated that when she falls, her mother crashes 10 floors below her. I read it with total understanding and admiration for this young woman who could see that this illness affects everyone in the family, not just the ill parties. As a parent you want to make your children feel better. When you can’t it is devastating. And the more you try and the less you can do to help, the harder it is.

As my husband and I were working our way through the past few months we grew closer. We both sort of came to an understanding that we had to trust in our little girl’s pain and do all that we could to help her. For a time that meant setting up a bed downstairs and sleeping with her so that she would not have to pull herself up the stairs on her knees. It meant using a wheelchair whenever leaving the house, and often around the house. We tried to help her to come up with ways to get her mind off of her symptoms. We rented lots of funny movies, and taped lots of funny shows. We bought her a tape of an N’Sync Concert that she can pop in when she isn’t feeling well and she can loose herself in her favorite group’s music. We made up a bag of activities that she could do sitting in the chair in the living room. There are small handheld games, bead sets, markers and paper, and clay. Her therapist introduced her to a special kind of clay known as FEMO. It is unscented and does not harden when left out. It is great for her hands as she works with it. It has actually helped to build up some muscle and relieve some of the finger cramps. It needs to be kneaded at first but quickly becomes pliable and very workable. It comes in dozens of colors and we even bought a lapboard and clay tools to make it more fun. The therapist has suggested ideas for her to do with the clay, from making a sculpture of her mood to just sitting and kneading it when frustrated. It has been very beneficial to her to have this outlet.

But the hardest thing for my husband and I to deal with was to figure out how to handle the day to day trials of living. Just doing the normal mundane tasks around the house became a chore. We felt our world spinning out of control and we didn’t know how to get it back. We didn’t know when to coddle our daughter and when to try to maintain a sense of normalcy and coping so that she did not become the illness?

Dr. Bell told us that it is not uncommon for patients with CFS to become almost hypersensitive to their symptoms, worrying about things that a normal person would just ignore. At this young age, it is hard for children to know when to worry, and when to feel at ease knowing that this is just another part of CFS. For us, it was a hard line to walk. We did find that our attitude had an effect on our daughter’s coping. If we do not appear overly concerned or worried then she does not worry as much. But if we stop everything and show that we are overwhelmed and anxious and at a loss as to what to do, then it seems to make her feel even worse, and more hopeless about her situation.

I have always sensed that I cope better by keeping a bit of denial in my mind as to how bad things are. I found this past winter that I was constantly challenging myself. I worried that if I allowed myself to cope by denying how bad the illness was, I would be “harming” her by making her feel I didn’t understand or believe how bad she felt.

In the past 2 days I have talked to 4 other parents of teens with CFS. I think we all have this coping mechanism of maintaining a degree of denial and worrying about how our children will perceive it. One of these moms suffers from CFS herself and she stated that even she goes through this denial. We all believe our kids, but we all need to keep a certain distance emotionally to stay sane. Otherwise our child’s illness would consume us, and render us useless to help.

I am there every day for my daughter and she knows that I will do whatever I can to help her. But I also try to keep some perspective about our situation. I can love her, help her and support her without smothering her. Too much concern, worry and help can actually stifle a person. It is so hard to find this balance, and I am still searching. It changes from day to day, as my child’s needs change. It also changes from year to year, as our children grow older. I hear parents of late teens saying how hard this is for them to know the balance between being there for their child, and stepping back when needed.

I have found that when things get bad I tumble down those 10 floors just like the adolescent mentioned in the book review to follow. It is so important to make our child feel loved, supported and believed. It is just as important for them to feel hope and optimism. I have found sometimes that it is easier to just give up for a while, or to take a vacation from life. We all need to do this. We stop worrying about what anyone else is thinking, we rent movies, we vegetate and we just get through the day the best way that we know how, a minute at a time. But we also need to know when it is time to stop and to rejoin the living- to get back to the art of living. It takes reevaluating life where it is and looking for the positives and seeing what you may be able to do to make things better.

When we realized that things were getting a little bit better for our daughter physically, we also had to face the fact that we had gotten ourselves into a bit of a rut. We talked about what we could do to regain some control. It was actually a very positive time for us. Together, with our daughter, we decided that a regular bedtime was first, upstairs in her own bed. Then we decided that a daily regime of getting up, dressed, teeth and hair brushed, and exercise were next. We asked her what she felt was most beneficial and these were areas that she wanted to strive for. The exercise is mild stretching, but it does help. Getting dressed may be just changing into clean flannel pants, but it makes her feel she is taking some control over her day.

She is connecting with some of her old friends again, ones from her class and from her online and telephone CFS friends. I am reading to her more and she is doing more independent reading instead of watching TV. She played the piano the other day, the first time in months. She feels like she is taking control of her life again, and her attitude is changing as she does more for herself. Along with this “taking control” she has had a change in attitude. She is more upbeat about everything. When symptoms get bad she uses techniques she has learned to try to control them instead of becoming lost in feelings of hopelessness and worry. These will be the topic of my next column.

And last week, she began tackling a few hours a week at school. She decided to try going in for Science class a few times a week. She has an “I CAN” attitude, not an “I will try.” I am amazed at what she is accomplishing and so very proud of her.

And what is different that led to this? Attitude! Dr. Bell helped us to see it was time to stop worrying so much and to start living again. This wouldn’t have been possible a few months ago, but the time is right, now. It is a balancing act always. Knowing when to step in and push our kids to try something and when to sit back and take a day off to just snuggle and watch movies. It is about always trying to find that delicate balance and then keep it. It is about getting through today, and then tomorrow, and then the next day. It is about living life the best that we can one day at a time.