Shanon McQuown is the mother of Anthony, a 19-year-old who
was diagnosed with CFS six years ago. They live in Stafford, Virginia where
Shanon is a special education para educator for the local school system. She
testified on behalf of children with CFS before the Department of Health and
Human Services’ Chronic Fatigue Syndrome Advisory Committee (CFSAC) and spoke at a group
forum at the CFIDS Association’s kNOw MORE CFIDS Educational seminar held in
Reston, Virginia in June 2005. Shanon is also the author of Harnessing the Wind:
Chronic Fatigue Syndrome and My Son, available on amazon.com.
Back to School for the Child with CFS
By Shanon McQuown
School bells are ringing all over the land. “Yippee!”
Most parents are filled with glee. Then, as the blessed day approaches, there is
the frantic flurry of activity in pursuit of the items on the class supply list,
the perfect backpack, the best outfits, the sharpest haircut…
SCREECH…
To parents of children with CFS, back-to-school means
something completely different. To some it means cleaning the house for the
arrival of a new homebound teacher. To others, it means buying new outfits in
the hope that their child will be well enough to wear them to school for some
portion of the year. To ALL of us, it means the art of trying to develop an
educational plan that will suit our child’s individual needs… and then praying
that the school staff will implement that plan.
Acquiring a Free and Appropriate Education (FAPE) for your
child with CFS is NOT hopeless. And parents of children with CFS are NOT
helpless.
As the mother of a child with CFS — my 19-year-old son
Anthony has been ill for six years — I would like to share some of my
experiences with you. I am not an expert, but I AM someone who has been there. I
hope that this article will encourage you and help you move forward with a
little more insight and tools you can utilize when you need them.
First, you must accept that Special Education is NOT a place.
It is a service. It doesn’t mean that a child is stupid, but that the child
needs to learn differently or in a different environment than the majority of
children his/her age.
In order to be considered eligible for Special Education and
Related Services, the disability must affect the child’s education. So
think about how your child’s CFS symptoms impact his/her education and keep in
mind that most educators know very little about CFS and how significantly it
can impair a child’s ability to achieve academic success. It’s your job to help
them understand who your child was before CFS, who your child is now and how
they can help.
A Map of the Route to Special Education
For New-Comers (parents of newly diagnosed
children)
Referral – If formal referral has not been made, you
must write a letter to your school’s Special Education Administrator requesting
an evaluation. Within ten business days of receipt of your letter, they should
respond to you with an invitation to a meeting. If at that meeting the team
(you, the special education designee, a general education and a special
education teacher) suspects that your child has a disability, the Special
Education Administrator must receive notification within five business days of
the meeting.
Evaluations – The team will decide what information is
needed and you will be asked to authorize an evaluation. You may be asked to
provide medical records and other documentation as well as for your permission
to speak to those medical providers who are treating your child. Usually your
child will receive psychological, educational, social history, hearing and
vision evaluations.
Eligibility – A meeting will be called to determine if
your child is eligible to receive Special Education Services. At the meeting,
evaluators will present their reports along with their recommendations and
discuss any medical reports and other information you provided. At your
discretion, your child may attend the meeting. Most children with CFS I’ve met
qualify for Special Education services under the category of “Other Health
Impaired” (OHI). With others, specific Learning Disabilities (LD) have been
discovered and they end up with CFIDS as their primary disability and LD as
their secondary classification. Please Note: You are entitled to view the
evaluators’ reports two days prior to the eligibility meeting. I recommend that
you write a letter requesting report copies and send or hand deliver it to the
school either after you sign the form authorizing evaluation or as soon as you
receive notice of the eligibility meeting.
Individualized Educational Program (IEP) Meeting – This
meeting must be held within 30 days of the eligibility meeting. If it is
determined that your child is eligible for Special Education Services, an
individualized educational program must be developed to meet your child’s
specific needs. The following must also be considered: assistive technology,
athletics, elective class options, extracurricular activities, physical
education, referrals to agencies and transportation.
For the Not-So-Newcomers
When you hear the words “IEP meeting,” does it make you want
to run screaming into the night? To be honest, I cringed at the thought.
As parents, we are on the front line of our children’s battle
with CFS. We’re their educational advocates. So be prepared for your IEP
meeting. Go in knowing what your child needs, what you cannot compromise on and
what he or she may be able to do without. Don’t be wishy washy and don’t lose
your focus.
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Here are some of suggestions:
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Document EVERYTHING. Keep records of all meetings, phone
conversations, written correspondence, messages and face-to-face
interactions.
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Educate yourself about your child’s disease and the
symptoms specific to your child.
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Be ready to help educate the team about CFS. Provide
them with pamphlets, brochures, videos and anything else which may be
appropriate. The CFIDS Association offers a number of free materials you may
find helpful.
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Remember that you are a critical part of the team. Your
input is as important as anybody else on the committee.
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If you feel it’s possible and appropriate, allow your
child to participate in the meeting.
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Have notes ready so you can stay focused on the issues to
be addressed just in case the conversation veers off topic.
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Have someone go with you to the meetings.
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Learn all you can about your child’s educational rights.
Your state’s Department of Education website should have a section for parents
of children with special needs.
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Once you have an IEP developed, stay vigilant about its
implementation.
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If you have questions or concerns, speak with the teacher,
case manager, special ed designee or administrator before things get out of
hand.
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Remember, even if someone has never encountered a child
with CFS, they may have worked with a child whose disability/illness shares
similar symptoms. Ask if they’ve worked with children with:
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Autism – Shared symptoms may include sensory issues such
as sensitivity to light, sound, smell and touch
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Traumatic Brain Injury (depending on area of injury) –
Problems with short-term memory, expressive aphasia
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Learning Disability – Similar auditory and/or visual
processing difficulties, delayed expressive processing, dyscalculia,
dysgraphia
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Visual Impairment – Shared symptoms include headache and
eye pain which may result in avoidance of reading or tracking
difficulties
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Arthritis – Joint pain
Frequent Omissions in the Education of Children with
CFIDS
My opinion is that the Homebound Services program was
developed for children with short-term illness or disability such as a broken
leg or appendicitis. At some point in the near future, children with these types
of health issues WILL be able to return to the general education setting and
pick up where they left off with no major reflection on their academics.
Since nobody knows when or if the health of a child with CFS
will improve, the often limited homebound services become, for many, their ONLY
education. I encountered raised eyebrows and “push back” after requesting things
for my son such as, one class per day, partial day homebound services/partial
day in school services and electives (art, languages, etc.) as homebound
subjects. What I’ve learned is that educators are just used to the way things
have always been done and find it difficult to get creative, or they believe
that there’s a statute mandating a certain procedure. Most times there isn’t.
Know your child’s rights and advocate for a program that fits your child’s
needs.
Elective Classes – A child with disabilities is
entitled to the same things as their non-disabled peers. If a school system
requires electives (foreign language, art, technology, music) for a general or
standard diploma, then your child needs these electives as well.
504 – A 504 is another educational plan for people with
disabilities. in my personal opinion, a 504 works better for short-term or minor
impairments. If a child’s CFS symptoms are mild enough that they can obtain
their education with limited adaptations, a 504 might work.
Physical Education (PE) – If PE is required, be
sure to establish a means for your child to get his/her PE credits. I don’t
recommend written reports for PE unless the report could be graded for both
English and Health/PE.
Sciences – If your child has chemical sensitivities, be
prepared. The school provided a respirator mask for Anthony so he could
participate in chemistry class labs.
Homebound Classes – Make sure that the homebound
classes begin at the time that is best for your child. Hold them in a place
where you child can recline if need be.
Homebound Services – In the Individuals with
Disabilities Act, there is no time limit for hours of homebound services
received.
Staff Training – The staff member who works with your
child must be trained in the area of your child’s disability.
Immune System Issues – Your child’s immune system is
impaired. You should be immediately alerted to any viral illnesses making its
rounds in the school (stomach, flu, mono, chicken pox, meningitis, etc). Also,
if your child needs a resting place in the school, do NOT agree to have it
located in the nurse’s office. Where would you find a bigger
collection of germs in a contained space? Hmmmmmm. Enough said.
Method of Complaint
If you are unable to resolve an issue regarding your child’s
IEP with your school system, what is your first step? The answer I usually hear
from parents is “HIRE A LAWYER!” Before you go that route, take advantage of the
free resources at your disposal. Below are the steps I would take (and have
taken). And don’t forget to document everything.
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Speak with your child’s teacher and express your
concerns.
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Write a letter to the Case Manager.
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Contact the Special Ed Administrator.
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Write a letter to your child’s Special Education
Supervisor.
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Write a letter to your school system’s Director of Special
Education.
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Write a letter to your school system’s
Superintendent
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File a complaint with your state Department of Education.
The Department of Education will:
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Intake information over the phone.
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Ask you who you’ve contacted in the chain of
command.
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Request copies of all your documentation. I sent
along information about pediatric CFS.
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Determine if your child’s rights have been violated and,
if so, which federal and/or state laws apply.
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Contact the school system to notify them of the reported
violations.
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Encourage resolution between you and the
school.
Then, if you must hire a lawyer in the future, you will have
documentation from the Department of Education to back up your case.
Terms You Need to Know
Individualized Education Program (IEP) – A plan
developed to address your child’s specific educational needs and which
accommodations, modifications, adaptations and/or related services that will be
required for your child to receive a free and appropriate public education.
Free and Appropriate Public Education (FAPE) – Children
receiving special education services are entitled to a public education at
public expense, under public supervision and without cost to the parents.
Related Services – OT (Occupational Therapy), PT
(Physical Therapy), Psychological Therapy, Counseling services, interpreting,
SLP (Speech-Language Pathology), in-school social work services, etc. It can
include other corrective or supportive services.
Prior Written Notice – If you have requested a service,
accommodation or modification for your child and the committee decides not to
provide it, you may ask for prior written notice. The committee will then send
you a form or letter outling what you had requested and why they decided to deny
that request. It will also mention whatever alternatives were discussed.
Procedural Safeguards – This document informs parents
of their rights with regard to the special education process. It should be
available on your school system’s website. I’ve found that many parents don’t
read this information thoroughly because it’s quite wordy. I strongly encourage
you to do so. It is empowering.
LRE or Least Restrictive Environment – Every child has
the right to be educated in classrooms with non-disabled peers. The following
steps progress from the least restrictive environment to the most restrictive
for a child with CFS.
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General education classes with
special education support
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Part-time general education
classes with support
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Resource classes
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Partial homebound services
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Homebound services
When Anthony was ready to try in-school services again, we
worked from most restrictive (homebound services) to least. We didn’t want to
set him up to “crash” by trying too much too quickly. First, he took one
collaborative class at school, then two, then three with special educational
support. By the time he graduated, he was taking three classes at school with
support from a para educator and four classes at home. The general education
teachers implemented my son’s IEP.
In this short article I’ve tried to include all of the
information that I wish I’d known when our lives started to spin six years ago.
I hope it blesses you. More than anything, I hope it blesses your children. I
want to see them soar with the eagles. I want them to feel as if they have power
or some level of control in some area of their lives.
And remember, you are not alone on this journey. I’ve found
that CFS makes an instant family out of strangers because nobody else can
really understand what we’re going through. I’m here for anyone who needs a
sounding board because others, who have been on this journey much longer than I
have, were there for me. Good luck to you all and my prayers are with you and
your children.
For a list of possible accommodations and modifications,
http://groups.msn.com/YPWCParentTeacherBridgeBuilder
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