Gearing Up for School
For Parents of YPWCs
By Lynn Vanderzalm
Originally published in Youth Allied By CFIDS, Summer
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
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.