Going to College?

How can we as parents be realistic about the limitations of CF and supportive of our child's hopes of an adult life? Being realistic is knowing all the plans and dreams could change. Being hopeful is living fully. Today is all we know. What better way to spend a young adult life than learning and living with other young people?

One of the best ways to navigate this period is to use important parenting skills and tools. Tools such as honesty, communication, and forgiveness are crucial to parenting a CF child. Honesty is seeing what is right in front of you and knowing the challenges you meet as a family. Communication includes educating yourself and your child about these individual challenges and how they impact every family member. Forgiveness includes acceptance and realizing there is no single right answer.

If you and your child feel ready, and begin to consider a college, there will be questions such as: where is your child going to live? This is probably your most crucial concern. Second, will they get the support needed to be successful? What if your student gets sick for an extended period? What will happen?

Many families address these concerns by establishing a relationship with the Disability Resource Center on campus. Through this center the college student's special needs and concerns can be met. Find out about the DRC on your child's campus before he or she registers. You will need a letter from your physician describing health status and special needs before qualifying for services. Through this resource your child may be able to have a single dorm room, special bathroom privileges, a note taker in class and other accommodations. These services are provided by law but they require you and your student to ask for them.

There are also special scholarships for CF patients available through Solvay Pharmaceuticals, The Cystic Fibrosis Scholarship Foundation, The Willard Bernbaum Scholarship Fund, The Boomer Esiason Foundation and other sources. Consult your local CF Center about financial opportunities. In addition, research your state's Department of Vocational Rehabilitation. In the state of California, CF patients may qualify for financial coverage of a portion of their tuition while attending college, as well as supplies, books and other expenses. This is determined by health status and not necessarily financial need. Investigate if this is available in the area your child will be attending school. (They may qualify after the first year of residency if they've moved to that state or are living with a relative in another state while attending school.)

Other things to consider:

• Find a pharmacy near your student.
• Find a local physician that's familiar
  with CF.
• Ask your medical providers if you should update any of your medical
  equipment.
• Investigate if your child can have access to a kitchen to cook or store extra food. Many students take a small refrigerator and microwave for their dorm rooms.

One of the benefits of your children going to college may include seeing them develop a new found self-confidence and openness about CF while knowing they can take responsibility for themselves. Another benefit will be practice in "letting go" while you pass on the handling of this disease to them. This is crucial to their success as an adult with CF.

The task of parenting children with CF requires a special nurturing and diligence. It can be difficult to let go. Not to take the place of your child, but to help yourself during this transition, find a focus. Pursue a new hobby or delve deeply into a personal interest you didn't have time for previously; perhaps attend a college class yourself (but not the same class as your child!).

Seeing your child grow, get a job, or go off to college fosters feelings of pride and hope. Give yourself credit for your hard work and success.