Fall 2000 ~ Newsletter

Cystic Fibrosis and Education
   

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Patient and Parent Perspectives

Getting Sick While Going To School

by Katey Ballard

Education plays an important role in my life; especially having CF. My CF did not start affecting me during school until the fifth grade.  I have always gone to a public school, since first grade.  In fifth grade, I had a feeding tube put in and was out of school for about a month; however, my teachers have all been understanding of me having CF and having to go the hospital during school.

Coughing and getting out of breath sometimes bothers me at school.  However, my parents have always either sent a letter or had a conference with the teachers so they would understand why I cough, etc.  Knowing that my teachers understand about CF and the side effects makes me feel more comfortable at school without worrying about my CF. When I am in the hospital during school, my work is sent up to the hospital for me.  My mom usually picks it up from the school and brings it to me.  When I am finished she sends it back to the school to be graded.  Therefore, when I return to school, I am caught up with everyone else rather than being left behind. 

Having CF can be tough, especially during school.  But when teachers know about it, they can help out and make it easier.  I like going to a public school because I more friends and activities to go to.  Don’t let education interfere with CF, do something about it!

Getting Your Tuition Paid In Full

by Tony Siciliano

You’ve graduated from high school and now you want to continue your education.  Higher education is pretty expensive, so how will you finance it?  Do you qualify for grants or scholarships?  Can you or your parents afford to pay out of pocket?  What about federal loans?  Let me suggest another alternative – contact your State Bureau of Vocational Rehabilitation. 

I didn’t contact the Ohio BVR until I was into my third year of law school and $50,000 in debt.  But I wish I had done it sooner.  It was so simple.  I called their office, made an appointment with one of the counselors, explained my health situation (CF and all its glorious attributes), and the next thing I knew they were paying for my third and final year of school.

In addition, the Ohio BVR is paying for my fees, parking permit, books, and because I’ll need to dress like a lawyer, they are giving me a clothing allowance.  Now why hadn’t I though of this sooner?  Because I didn’t know any better.  However, fair reader, you do know better so give your local BVR a call.  Let them help you get on your way to higher learning.

Been There, Done That

by Barbara Hill

The first day of daycare or school is a stressful event for kids, parents and school staff.  Add to that a chronic and life-threatening illness and it can add up to a traumatic event!  Having two children with CF starting daycare and later school on the same day and with two separate sets of symptoms felt downright overwhelming.  But, with the help of my CF center doctors, nurses, and social workers, it all came together and I’m sure I even managed to appear calm and in control during those first harried days.

Now, with my experience as a school nurse, I have seen the stress experienced by the people who are in control of your children and whatever health care they may need and receive while they are at school.  And you need to be a strong and active participant in the education of those who will be with your children for many hours every day.  They probably do not understand CF and most importantly, they do not understand your child until you educate them about both.

Prior to school starting, or as soon as possible afterwards, you need to meet or speak with your child’s school nurse.  Provide him or her with one of the school guides available through the CF Foundation or at CF clinic.  Explain to them about CF and your child’s unique symptoms, how you handle those symptoms and what you should like the school to do in these situations.  Discuss how you handle discussions of CF at your house and how knowledgeable your child is about their disease and prognosis.  Also, talk about the possible impact CF might have on your child’s academic achievement and their ability to make and / or keep friends.  Share your concerns and knowledge and ask questions.  This is a real nurse and she can help make this transition easier for you!  Finally, discuss who else needs to know about your child’s condition.  You may want to keep this information confidential; she may want to let all the teachers and staff know in case of an emergency.  If you feel the need to change some decisions later, after discussing them with your child’s doctor, she’ll understand.  She / He may also have a health plan, just like at the hospital.  Ask whether this exists and what it will say.

Usually, you will fill out some forms so that the school can give your child medication.  Do this as soon as possible.  You, or the school, can usually fax the form to the doctor for a signature if that is needed.  Talk about when you child needs to take his / her enzymes and discuss whether they can accommodate those needs.  Decide together whether an inhaler should be brought to school or actually kept with the child.  Avoid sending medication that can be taken at home, like vitamins or antibiotics that can be given before and after school.  Most of all keep the school informed of any changes!

Finally, ask about having your child classified under a 504 plan.  Decide together if your child needs this plan and what benefits it will bring for your child.  My understanding of a 504 (IEP) plan is that it provides services to help a special needs child (in this case, health care needs) be academically successful when the child doesn’t need any special education services.  In other words, your child would not be in a special education class, doesn’t need assistance to learn math, etc., however, they might just need a few extra days to make up homework when they are ill, or they need the teachers to fax assignments to the hospital school, or perhaps they need extra time between classes to climb the three flights of stairs to English (or be able to use the elevator).  Most of the time, your school will work with you and your child without having any special classifications, but its there if you need it.

Katie and Jacob are 16 now and I probably quit going to school to talk to the teachers when they were in 7th or 8th grade.  But, we live in a small community and I knew several teachers and staff members.  Now that every school has a nurse, you should have a strong liaison and advocate for your child.  Sometimes I felt silly writing a note that said, “Please let Jacob get a drink of water when he needs it” (This is his excuse to get up and pass gas out of the classroom), or “Please call me if Katie’s cough gets any worse than two spells an hour.”  Stuff that sounds silly to others was really important to us.  I probably got one or two calls that weren’t necessary but they were worth it.  Both kinds have had what I think they would describe as a perfectly normal childhood!  Just open the lines of communication with your kids’ school and keep them open!  It will be great!

Do You Value Education?

by Tommye Lambert and Amy Crews

Doctor, lawyer, astronaut, engineer, teacher, minister, singer, dancer, artist, politician, governor, senator, even President of the United States!  When out children are born we are excited by the possibilities of who they may become!  We are determined that nothing will stand in their way.  That is, of course, the way that it should be.

Outside of our faith in God, education is perhaps the most valuable gift that parents can offer their children.  This is especially true for children with chronic illnesses like Cystic Fibrosis.

My daughter, Amy Crews, was diagnosed with Cystic Fibrosis at the age of two months old.  When Amy was two years old, her father and I divorced.  I become a single, working mom.  A private school was not an option.  I made a silent commitment to her to do everything humanly possible to give her the opportunity to learn and grow and accomplish her dreams.  Amy is now fifteen years old and a sophomore at Hoover High School.  Amy’s current Grade Point Average is 4.23, and she has been the recipient of numerous academic and character recognition awards.  Amy is in the top 5% of her class of 729 students.   

Amy’s battle with CF has been rocky.  She has undergone a lobectomy, two embolizations, three port placements, a feeding tube, and a sinus surgery.  On average, she receives IV antibiotic therapy four times a year (although it has been as frequent as six times a year).  Through all of this, Amy has maintained an “A” average as well as being active in choir and drama at both school and church.

If one thing makes a difference in the quality of Amy’s education, it is constant, ongoing communication with her school.  Here is the plan that I follow to ensure that Amy receives the best education possible.  Each year, before the school year begins, I work with the counselor and principal to develop a schedule for Amy that minimizes the distance between her classes.  After the school year begins, the counselor, principal, and I meet with Amy’s teachers.  We describe what Amy is like when she is sick and what she is like when she is well.  We set academic goals.  We discuss the need for additional snacks, bathroom breaks, and allowances for being late for class and late with homework assignments when she is sick.  We keep her out of the health room so she will not be expose to illnesses.  Her counselor monitors her medications.

Federal laws protecting all handicapped students cover CF children.  The handicap status is entitled “other health impairment”.  Provisions for “other health impaired” students allow accommodations to be made up to providing a homebound teacher when students are out for extended periods due to illness.  If you child is in a public school system, he / she is guaranteed the right to a quality education.  Parents are the education advocates of their children.  We must know the laws that protect them.  We must stay involved with our child’s school and gently, yet firmly guide the school system until it meets the needs of our children.  Now I am going to let Amy share with you.

I love my mom and appreciate the fact that she lets me be involved in what is said to people in my school.  Having teachers that understand CF can make it a lot easier when I may not be feeling very well. 

An example of getting special privileges when needed was this year with an elevator key.  My mom shared with my principal and teachers that I may get tired easily and find it difficult at times to walk up and down all of the halls and stairs.  She arranged for me to get a key to an elevator.  Though I had the key, I did not use it at first because I wanted to be with everybody else.  One day I got really tired and decided to use it.  I soon realized that it did actually help me to conserve my energy.  I am now thankful to have it.

To sum it up, I am a teenager and want to be treated like everyone else!  It may be hard for me to accept special privileges, but it is sometimes necessary for me to accomplish my goals.  I try no to let CF get the best of me.  I have goals in life and thank the Lord and my family for the encouragement to accomplish them.

Home Schooling Vs. Public Schooling

by Wanda Strahan

I am a mom of three girls, two of which have CF, and have learned quite a lot in the last few years.  I started home schooling Susan, Jennifer and Amanda four years ago.  I started home schooling because I did not think my kids were getting the education they needed.  In doing this, I have noticed that they seemed to stay away from many infections that I saw them get in the public schools.  My greatest reason and reward though, is getting a chance to guide them in their education and get to see them mature, become adults and build some values.  I would never tell anyone that home schooling is best for them, but I am glad that my kids and I chose to do it.  I have learned the joy of spending more time with my children and am blessed everyday for their lives.

 

 

This page last updated December 23, 2003 by Brandi Thorpe.