Gearing Up for School

For Parents of YPWCs

By Lynn Vanderzalm


Originally published in Youth Allied By CFIDS, Summer 1996

It's August again, the month for our daughter Alisa to return to school. This is the eighth year my husband, Bas, and I face the task of gearing up for Alisa's return to school while she struggles with CFIDS. This year she remains a junior, while her classmates proceed to their senior year. As always, we brace ourselves for the ambivalence we will feel.

On the one hand we are glad that Alisa is well enough to handle any school at all. If she stays at the functioning level she was at this past spring, she will sign up for two classes. The social interaction that even two classes give - even though she was able to attend those classes only 15 days last semester - helps her feel connected to adolescent school life.

On the other hand we grieve the losses again. As I fill out the school registration forms, I feel the pain. The pink sheet lists all of the available extracurricular events and asks parents to give permission for their children to participate. For the fourth year in a row, I toss out the sheet, barely able to glance at all of the options Alisa would love to explore: drama, chamber singers, the speech team, show choir. I think about how she would love the excitement of participating in these events, what a boost to her self-esteem they would be. But rather than get stuck in the pain, I think about what we as a family can do to compensate for these losses. How can we help her develop and keep alive her love for drama, music and public speaking even though she can't be involved in these school events?

As I toss out the gray card for ordering a cap and gown for graduation, I think about the emotional upheaval Alisa will feel this year as her friends make their plans to go off to college. I wonder how we can anticipate the upheaval and help her move through this passage. What can we do as a family to help her have a sense of passage, too, even though she will not graduate this year? She has talked about wanting to redecorate her bedroom. Maybe changing her room will help her feel that her life is moving to a new phase even though she won't graduate or move away.

We will make the customary before-school-starts appointments. We will need to see all three of her doctors and obtain signed statements that she will once again be in school only part time, that she will need a tutor and that she will not take physical education. We will meet with the guidance counselor to select which classes and teachers will work out best for her needs; we will talk about setting up non-timed sessions for her to take the PSAT and ACT tests. We will also need to discuss options for Alisa's future now that she has fallen behind her class. Should she try to complete the high-school diploma requirements, even though it may take her another three years? Should she take the GED (general education diploma) tests and hope that colleges will accept her if she recovers? What alternatives can we explore for on-screen learning, either on the Internet or on CD-Rom?

We will meet with the school nurse to review new medications and treatment information. We will talk with the dean about Alisa's need for handicapped parking and we''ll go to the police station to fill out the forms for another handicapped parking tag. We will contact the school district's Special Needs Department to arrange for homebound tutoring, hoping that we can find tutors for the classes Alisa will take. We will write letters to each of Alisa's teachers, explaining CFIDS, Alisa's school history, what they can expect from the year and how we will work with them to insure as smooth a year as possible under the circumstances. We will set up appointments to meet with each of the teachers after school has been in session for two weeks. We will set up some extra counseling sessions with Alisa's counselor, knowing that the school transition will bring new stresses.

Many of your feelings, decisions and appointments will be different from ours. Some of you wish your child was healthy enough that he or she could even consider attending school, even part time. Some of you will face school personnel that are hostile or uncooperative. Some of you will face resistance from a child who can't face the realities of CFIDS and just wants you to back off. Some of you (like me) also have CFIDS and know what it will cost you to gear up for another school year.

Don't be surprised when you feel the roller coaster of emotions. Just because you are the adult doesn't mean you won't feel the anger, sadness, frustration and exhaustion of facing your child's school year. Allow yourself to grieve. Talk over your feelings with a trusted friend. But then move on to plan how you can help your child make the transition back to the school year, whether your child will spend it at home, in school or a combination of both. Commit yourself to doing all you can to make the school year one of growth for your child. Enlist help from medical professionals, social workers, counselors, school personnel, church and community youth group workers and friends. Talk with other parents of YPWCs. Draw on spiritual resources. When Bas and I have done all we can, we can rest, knowing that God knows Alisa's past, present and future. He holds her in his hands, and he will work it out.