The Parent's Corner

Letting Kids with CFS Choose Their Activity Level

by Mary Robinson

Published in Lyndonville News, January 1999

As a parent of 2 children with CFS I have learned many things about coping and living with this illness when it invades your family. My husband and I are learning to balance the daily tasks of parenting our children with CFS, and our daughter who is not stricken with the illness. I have learned to work with the schools to secure the best academic program available, be it slight modifications with the teacher, to a formal 504 plan or special education services under the "Other Health Impaired" category of IDEA. (These are services offered in the USA.) Along with assisting Dr. Bell in several studies on children with CFS, I have served as a family CFS support group leader and have counseled families on the phone about their children's family and educational needs. I find support in my own parenting from sharing with, and learning from, other parents in this difficult situation. I hope that in the months ahead you will find ideas in The Parent's Corner that make the task of parenting your children with CFS a little easier.

In trying to decide how to approach this column I felt a basic statement of our philosophy might be in order. When my son first began showing signs of CFS I 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. Should we 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 emotional support. But on the days that he felt he could tolerate more vigorous activities, he suggested that we encourage him to do so. We have learned that by forcing limitations on our children, we only got resentment in return. When we have encouraged them to monitor their own activity levels, and to take breaks when "they" feel the need, we have found much more success. Over the years our children have learned when to limit what they are doing, so as not to have to deal with the "paybacks" later on. But there are also days, that they do overextend themselves and often the payback is a very unpleasant spell. Whatever the decision, we encourage them to make it on their own, with our support. They are the ones that have to learn to listen to their bodies, and experience is the best teacher. My children have learned to take more frequent rest breaks during sports, to turn down invitations to outings they know they could not tolerate, and to also partake in other things that are worth the price they may have to pay later on.

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 CFS. 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 it is hard enough to have to give up the time to illness when the symptoms flair up, but he would not want to limit his activity too much and miss out on those rare opportunities when he is feeling well, to just be a kid.

Do not misunderstand me on this issue. We do not take a totally backseat approach. If we feel that one of our children is setting themselves up for a setback, we gently remind them what may happen if they engage in the planned activity. We suggest ways that they can keep their plans without overdoing it. However, in the end, we all know that this is their decision to make, and we support them in whatever they decide.

As a parent this has been one of the hardest things to do. To just stand back and watch my children race around and be so active knowing how they are going to feel 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.

Another issue that is very difficult to undertake is the issue of school. Some children 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 is not possible due to the severity of their symptoms. The various options that parents have chosen will be discussed in more detail in future issues of this newsletter.

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 my children into school to be with their peers. I asked my son, who is now in the 9th grade and in remission from most symptoms, 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, when he was able, a little bit every day he was able to minimize the social disruption of feeling like a total outsider. When he began to tolerate near 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 I to watch, as he fast forwarded through 4 years of socializing- the giggles, to the sports, to the time just visiting with friends, in 4 short months. He picked up where he had left off when CFS struck, and ended with where he would have been had CFS not invaded his childhood.

I hope that you find the information shared in this column and newsletter helpful in your role as parent to your child with CFS. May you find hope for your child's future and information to make each day a little easier to wake up to. You are not alone in your struggles. Many have faced and continue to face the same challenges and have learned how to cope. I encourage you to share your parenting experiences and things that you would like to see addressed in this forum.

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