Visual Deficiencies

If your child is complaining of problems seeing when he or she is trying to read, please take him/her to a vision specialist for a thorough check up.  Unfortunately, most people believe that when a person has 20/20 vision, it means that they can be having no problems seeing.  This is an incorrect assumption and your child may be struggling needlessly. 

My son's doctor discribes it as this.  Although Anthony has the visual acuity of 20/20, he has an accommodative insufficiency.  This means that his eye muscles have difficulty maintaining up close focusing.  This is NOT unheard of.  This can cause eye pain, headaches, eye fatigue etc. 

I have included a list of some sites that were helpful to me when I needed to understand why my son was having such a hard time with reading.  I hope these links are helpful to you.

 /archives/2001/2001-4-article02.asp

Visual Dysfunction in Chronic Fatigue Syndrome

http://www.cfids.org/archives/2001rr/2001-rr3-article02.asp

P.A.V.E.  Parents Active For Vision Education

http://www.pave-eye.com/

Lifetime Eye Care

http://www.lifetimeeyecare.net/documents/accom.html

Children's Vision Information Network

http://www.childrensvision.com/studies_and_research.htm

Reading Problems http://www.doctorpolitzer.com/reading_problems.htm

Vision and School Problems http://www.visionhelp.com/reading.htm

Students with Persistent Problems- The Visual Connection http://www.optometrists.org/therapists_teachers/school_nurses_eye_exams.html

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Sixth Meeting

I introduce myself as Anthony’s mom because he is why I am here. I have been a paraprofessional for several years in special education, working with children with mild or moderate mental retardation, autism, learning disabilities, and emotional disturbances. I am the core leader of the accessibility ministry at our church for all disabilities. I am trained as a special education coach, which empowers parents to advocate for their own children. I am a member of Partners in Policymaking and I am on the Special Education Advisory Committee for our school system.

I am an expert in “Anthonyology.” As adults, we know how difficult it is when we are not capable of going to work because we are sick. However, our children are expected to do their job despite debilitating and devastating effects of CFS. Children are subjected to judgment, ridicule, and humiliation by uninformed educational staff or those who have just enough information to make an incorrect assumption, such as the child is not showing any effort or they are just depressed. These are the people who are responsible for the evaluations and observations that determine a child’s eligibility to access services from the school system.

Parents must navigate the medical kingdom and must also vigorously battle through the special education maze. No Child Left Behind includes our children with CFS, but they are being left behind. Educators are unsure how to apply special education criteria to a child with CFS. Since CFS covers such a vast spectrum of symptoms, educators become overwhelmed when trying to construct educational plans. They fail to realize that just because something has never been done, it does not mean that it cannot be done. For example, homebound for more than five hours per week is possible and electives on foreign languages can be taught on homebound. School systems expect physicians to make recommendations for the child’s educational plans. However, physicians are not always aware of the most up-to-date strategies or related services, such as occupational therapy, physical therapy, speech language pathology, or visual aids that are available to the school systems.

After working for several years in special education, I was surprised to learn that I would one day have to apply the strategies that I had learned to my own son. I thought that it would go smoothly once my son was diagnosed. However, the process did not go smoothly. I was involved in a two-year battle that included the Virginia Department of Education. I knew what documentation to keep and I knew how to fight the system, because I was trained by that system. What happens to the other children?

I was distressed that there were not a lot of modifications available in relation to pediatric CFS. As a result, I developed an educational plan specific to my son’s need and I was vigilant over exemplimentation. I am happy to report that my son’s lowest cumulative grade as a senior is 3.75. Seeing that success, I developed a workshop for educators to help other children. The last half hour of the workshop is devoted to brainstorming in groups over case studies and presenting recommendations. These recommendations are given to the parents, who in turn can present them to the child committee.

I have seen these children realize educational success. I want the same available to all of our children with CFS. I have driven people crazy at my son’s school and other schools by asking “what if” and “why not.” If the answer was no, I would ask for it in writing. This approach gets results.

Some of my suggestions would be that educational workshops should focus more broadly on the entire school staff (including bus drivers, school psychologists, school nurses, librarians, and special education supervisors), with hands-on application of learned materials. The second recommendation is to inform parents and the Department of Education about CFS in children, their educational needs, how to level the academic playing field. The third recommendation is to develop an outline for parents on how the IDIEA applies to children with CFS.

SON'S ILLNESS LAUNCHES MOM'S CRUSADE

http://www.fredericksburg.com/News/FLS/2005/072005/07052005/110628

Article about Shanon and Anthony published July 5, 2005  in The Free Lance Star (Fredericksburg Area Newspaper)

Harnessing the Wind

Chronic Fatigue Syndrome and My Son

by

Shanon McQuown

Author House Publishing  http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=17261 or you can order it from www.amazon.com, www.target.com or www.barnesandnoble.com

Anthony began to complain of other symptoms (chest pain, sore throat, muscle and joint pain, headaches and extreme fatigue).  He was frequently confused and frustrated when trying to explain his symptoms to his doctor.  One day, after the doctor left the examining room, Anthony said to me, “I wish I could go to sleep and never wake up again.”  I realized my son was full of despair.  When the doctor returned, I told him what Anthony said and was promptly given a referral for Anthony to see a counselor.  The counselor was helpful assisting Anthony in facing his fears of medical treatment.  Once his digestive problems improved, so did his demeanor.  <o:p></o:p>

When the new school year rolled around, Anthony attempted to make it to school again.  His attendance was suffering.  He was too exhausted to make it to school.  Yet, he would sleep for an average of anywhere from 13-22 hours in a day.  Finally, his teachers, school nurse and school counselor began to get concerned about the things they were observing at school.  Anthony was exhausted all of the time.  It took extraordinary amounts of time for him to travel between classes.  He couldn’t remember to turn in work--even if they had done it together in class.  The school nurse would send him home with low-grade fevers and swollen lymph nodes.  I was relieved that someone else was seeing that something was wrong.  I was truly at my wit’s end.  Anthony, at this point, was 5’6” and weighed only appx. 104 lbs.  <o:p></o:p>

Repeatedly, I took Anthony to Dr. N. (the general practictioner), when the school would send him home.  Repeatedly, Dr. N. would berate me for not “making” Anthony go to school.  He told me that Anthony “looked fine” to him.  I restated the reason that I brought Anthony in.  We argued about our difference of opinion.  I tried to explain that he didn’t know Anthony.  I tried to tell him of the child I knew before he became ill.  Again, he told me nothing was wrong with Anthony and I just needed to make him go to school.  At this point, I became so angry that tears filled my eyes.  Anthony said, “Come on, Mom.  Let’s go.  I’m fine.”  This just made me even madder because I knew Anthony was trying to protect me.  I pleaded with God to allow me to “lay hands” on this man.  God didn’t allow me to because He knew it wouldn’t have been for the purpose of healing.  Instead, I told Dr. N. I did make Anthony go to school and one hour later, they’d call me to come back and pick him up.  In what I guess was an attempt at intimidation, Dr. N. announced, “Well, maybe I just need to talk to the school.”  I gladly handed him the phone number.<o:p></o:p>

Dr. N. never called me after speaking to the school.  The next week, after picking Anthony up yet another time from school, we again entered Dr. N’s office.  He sneered, I don’t know what devastating disease you think your son has, but he’s fine.  I told him that I hoped my son didn’t have a “devastating illness.”  By this time, I had become firmly convinced that this man was the spawn of Satan.  He mentioned the fact that Anthony had high levels of Ebstein Barr Virus/EBV (virus that causes mono) in his blood.  When asked what that meant and if that could have been causing Anthony’s symptoms, he informed me that there was no way to know when Anthony had been infected or how long it would last.    Fortunately, I had discovered the Internet.  I had entered Anthony’s symptoms into a search engine and was taken to CFS sites.  I, then, asked the doctor what he knew about CFS.  He told me he’d never heard of a boy Anthony’s age to have it.  From the research I’d done, I knew there were others.  I just looked at Dr. N.  In a condescending tone, he said, “If it will make you feel better, I’ll give him a referral to see an Infectious Disease Specialist.  I told him that I would feel better if somebody was doing anything for my child.  We were given a referral to see Dr. Bernstein as we left that day.  We left the office with limited hope.  To Anthony, he was being sent to yet another doctor to poke and prod his body and then tell him nothing was wrong.  How do you keep a child from becoming discouraged when those they look to for help ignore what’s happening?<o:p></o:p>

When we got home, I talked to Anthony and said something like, “Anthony, you’ve got to learn to be an advocate for yourself.  I can’t remember all of your symptoms and you forget by the time we get in the doctors’ offices.  We need to make a list of the things that bother you.”  We then made a list from head to toe, internal and external.  I tried to maintain my composure as that list continued to grow.  When we were finally finished, I asked Anthony why he didn’t tell me all of the symptoms before then.  He explained that he didn’t know they weren’t normal since some of the symptoms had been with him as long as he could remember.  I felt a lump rise in my throat as we addressed his pains.  I learned that sometimes, when I hugged my child, I hurt him because his whole body had been hurting (even his skin).  <o:p></o:p>