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Individual Education Program - IEP

   
 

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By law, all students are eligible for an Individual Education Program if they have a medical condition like TN, a learning disability, emotional difficulties, etc.  Check with your school district to learn about the process.  You may need to take an active role in order to ensure that your child receives the education he or she deserves. 

     
     

Letter for School Officials

Dear (Teacher/Principal/School Nurse/School Board Member/Superintendent):

___________ has Trigeminal Neuralgia or TN, which causes severe pain.  It is neither contagious nor inherited. It is very rare, especially in someone so young.  

TN is a pain that is described as among the most acute known to mankind.  It produces excruciating, lightning strikes of facial pain, typically near the nose, lips, eyes or ears.

TN is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw.  By many, it's called the "suicide disease". 

Just as the muscles contract very intensely during a grand mal seizure, because the nerve’s are stimulated violently, ___________  sensory or pain-sensing nerves are stimulated just as severely, causing brutal pain.

____________ has had (number and name of procedures, if any)  to correct this problem but so far the condition continues.  Because common pain medications don’t work for neuropathic pain, ________________ doctors have tried many anti-seizure medicines but to date none have ended her pain.  

Neuropathic facial pains like ________________ TN have “triggers” which either incite the pain or make it worse.  Some of __________ triggers are (wind, increased stress, or becoming over tired).  Therefore, _____ should not go out on windy days; covering the face is not enough.  Likewise, a simple cold means much more pain due to coughing and sneezing which may mean more medications. ______________ must do everything possible to protect herself/himself from pain.

As a mother, I do not take missing school lightly.  When _______________ stays home, you can be assured that it is for a valid reason.  For more information on TN and facial pain, please visit the Trigeminal Neuralgia Association website at:  www.endthepain.org.  Please feel free to contact me at any time via phone at _________________________ or via email at _________________. 

Sincerely,

Your name

What Teachers Need to Know

  • The pain is horrible and unpredictable

  • Believe your child when he or she says they are in pain

  • Triggers for your child’s pain.  Wind, .chewing, talking, stress, etc.

  • Side effects of meds: nausea, tired, short term memory loss, shaky hand writing, unsteadiness, etc.

  • Colds or stomach viruses are twice as bad for people with TN.  The coughing, sneezing or vomiting will exacerbate pain and may take weeks to bring it back under control.

  • Bad days are really very bad days and your child may just have to put school work aside to take extra medications or rest.  This is where an IEP comes in.

Sample Instructional Accommodations

  • Extended time to complete all tests/examinations.
  • Allow re-take of tests with a score lower than 60.
  • Allow additional time for papers, homework, or projects with no grade penalty.
  • Provide opportunities for repetition of facts or re-clarification.
  • Allow child to go to the nurse as needed without questioning.  Nurse will NOT attempt to check her ears or dissuade child from calling parents so she may go home.
  • When absent, classroom teachers will promptly and thoroughly respond to child's emails to provide her with ALL material missed via email child email address, or parent email address or fax number if possible. This includes class notes, homework, hand outs, study guides, project or paper requirements. Child will be given an opportunity to discuss the material with the teacher and feel comfortable with it before being tested on it.
  • Study Guides will be:     

Legibly written

Clearly labeled

Provided at least 3 class days prior to all tests and quizzes.

Clearly explain the format of all tests.

Midterm and Final exam Study Guides will be provided at least 7 class days prior to exam.

Provide review of essay questions.

Shortened list of potential vocabulary words.  If there 50 potential words they need to know but only 5 will be asked give her 10 or so to study.

Allow the use of a blank piece of paper during tests for memory purposes.

  • Advance notice of longer reading assignments, so it is possible to get books on tape from libraries.
  • Allow for partial credit or corrections when computational errors are made.
  • On tests, verbally clarify if child is confused.
  • CHILD IS EXEMPT FROM DISTRICT ATTENDANCE POLICY.