504 and Special Education Information for Parents
This page will provide basic information about the ARD process and what to expect when you go to ARD; handicapping conditions as they relate to PANDAS; and accommodations specific to PANDAS school age children. The information here will be special education in general; contact us through this website for infoamtion specific to your school district.
Terri and Michael Verdone are both special educators in Texas with a combined 44 years service in Houston area school districts. We are also parents of child afflicted with PANDAS, one child with profound dyslexia, and one bipolar with tourettes child.
Terri and Michael Verdone are both special educators in Texas with a combined 44 years service in Houston area school districts. We are also parents of child afflicted with PANDAS, one child with profound dyslexia, and one bipolar with tourettes child.
Your options for receiving services for your child
There are two options that work for children with special needs. The first is 504 service. The second is Special Education. I will explain the pros and cons of each below.
504 and Special Education
This arose from the Rehabilitation Act of 1973 that prohibits schools from discriminating against students with disabilities. Under Section 504, students with disabilities may receive accommodations and modifications as well as supplementary aids and services to ensure that their individual educational needs are met as adequately as those of non-disabled students. Under Section 504, children with disabilities must be educated with their non-disabled peers "to the maximum extent appropriate." Students may only be placed in separate classrooms or special education courses when, after an appropriate evaluation, it is determined that “the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily” (texasprojectfirst.org) From a practical point of view, the only thing that 504 cannot do is change the TEKS for the student. This means changing the standards under which a child meets the minimum grading requirments to pass a course. Special Education is more comprehensive. Under Special Education, TEKS and standards my be if the ARD committee determines that it is in the student's best interest. However, the same rules that apply to 504 apply to special education. There are procedual differences for each that will be discussed in a later section.
504 and Special Education
This arose from the Rehabilitation Act of 1973 that prohibits schools from discriminating against students with disabilities. Under Section 504, students with disabilities may receive accommodations and modifications as well as supplementary aids and services to ensure that their individual educational needs are met as adequately as those of non-disabled students. Under Section 504, children with disabilities must be educated with their non-disabled peers "to the maximum extent appropriate." Students may only be placed in separate classrooms or special education courses when, after an appropriate evaluation, it is determined that “the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily” (texasprojectfirst.org) From a practical point of view, the only thing that 504 cannot do is change the TEKS for the student. This means changing the standards under which a child meets the minimum grading requirments to pass a course. Special Education is more comprehensive. Under Special Education, TEKS and standards my be if the ARD committee determines that it is in the student's best interest. However, the same rules that apply to 504 apply to special education. There are procedual differences for each that will be discussed in a later section.
Qualifying Conditions (QC) for Special Education and 504
Most applicable for P.A.N.D.A.S.
OHI--other health impaired: This encompasses everything from ADHD to encephalitis to diabetes. Any disease or disorder that affects a child's ability to function within the framework of the traditional school can be labled OHI. This requires that the treating doctor provide a diagnosis and diagnosis code for the school. Generally there is a specific form that each school district has created that the doctor will need to fill out and return. I have found that a letter detailing the disability accommpany the form for clarity is very necessary to make school personnel understand the specifics of the disability. This is an appropriate QC for 504 or Special Education.
LD--specific learning disability: This refers to learning deficit in areas such as math and reading and may be uner the aupices of dyslexia, disgraphia, discalcula, and others. Each of these must be determined through a Diagnostic Battery completed by the school diagnostic specialist. Parents can provide outside testing, but it is up to each district to determine whether or not it will accepted. Dyslexia, disgraphia, and discalcula are the most common QCs for 504 in this category. More severe instances are covered under the special education umbrella.
AU--autism spectrum disorder: Very important--this can ONLY be assigned by a treating doctor. Schools may not assign this QC without the student's doctor's input.
MR--mentally challanged: This also requires testing by the school diagnostic specialist. But the student's functional rating must be significantly below normal to qualify. Generally, this is noted when a child enters Pre-K.
SI--Speech impaired: Speech impaired children are offered speech therapy through the school system. Students must be assessed through the diagnostic specialist but are often referred by the primary grade teachers to speech services.
All of the above HCs are diagnosed by the school diagnositian or the school psychologist. The process is long and convoluted but generally works in the child's best interest. Often this entails at least 6 weeks of classroom observation and diagnostic testing. Schools may also insist on trying the various levels of RTI (Response to Intervention) as a first step. That's fine, but you will also need to insist that Special Education or 504 testing be done at the same time. This is when a doctor's letter is most important for our PANDAS kids.
OHI--other health impaired: This encompasses everything from ADHD to encephalitis to diabetes. Any disease or disorder that affects a child's ability to function within the framework of the traditional school can be labled OHI. This requires that the treating doctor provide a diagnosis and diagnosis code for the school. Generally there is a specific form that each school district has created that the doctor will need to fill out and return. I have found that a letter detailing the disability accommpany the form for clarity is very necessary to make school personnel understand the specifics of the disability. This is an appropriate QC for 504 or Special Education.
LD--specific learning disability: This refers to learning deficit in areas such as math and reading and may be uner the aupices of dyslexia, disgraphia, discalcula, and others. Each of these must be determined through a Diagnostic Battery completed by the school diagnostic specialist. Parents can provide outside testing, but it is up to each district to determine whether or not it will accepted. Dyslexia, disgraphia, and discalcula are the most common QCs for 504 in this category. More severe instances are covered under the special education umbrella.
AU--autism spectrum disorder: Very important--this can ONLY be assigned by a treating doctor. Schools may not assign this QC without the student's doctor's input.
MR--mentally challanged: This also requires testing by the school diagnostic specialist. But the student's functional rating must be significantly below normal to qualify. Generally, this is noted when a child enters Pre-K.
SI--Speech impaired: Speech impaired children are offered speech therapy through the school system. Students must be assessed through the diagnostic specialist but are often referred by the primary grade teachers to speech services.
All of the above HCs are diagnosed by the school diagnositian or the school psychologist. The process is long and convoluted but generally works in the child's best interest. Often this entails at least 6 weeks of classroom observation and diagnostic testing. Schools may also insist on trying the various levels of RTI (Response to Intervention) as a first step. That's fine, but you will also need to insist that Special Education or 504 testing be done at the same time. This is when a doctor's letter is most important for our PANDAS kids.
The ARD Process
I will discuss this process as it relates to Texas as that is what I am most familiar.
If you or your doctor feel that services are warrented, you will need to quest referral to special education through your school counselor. Make sure to process the request in writing so that there is a written record of everything.
The ARD Guidlines from the Texas Education Agency The previous hyper link will take you directly to the Texas Education Agency's ARD Guidelines for Texas.
But even without being under a specific program, our students can still have accommodations necessary to facilitate their work. RTI: Response to Intervention was designed to provide accommodations to help students acheive success without the need of the federal programs. The backside to RTI accommodations is that they are not implemented on the state mandatory testing protocols.
If you or your doctor feel that services are warrented, you will need to quest referral to special education through your school counselor. Make sure to process the request in writing so that there is a written record of everything.
The ARD Guidlines from the Texas Education Agency The previous hyper link will take you directly to the Texas Education Agency's ARD Guidelines for Texas.
But even without being under a specific program, our students can still have accommodations necessary to facilitate their work. RTI: Response to Intervention was designed to provide accommodations to help students acheive success without the need of the federal programs. The backside to RTI accommodations is that they are not implemented on the state mandatory testing protocols.
Accommodations Specific to PANDAS
The following is a document that we created for the school to deliniate all of our DS's symptoms and needed accommodations for the disorder. If you would like to have a copy of the PDF please contact me via the contact page, and we will be happy to send it to you.
Letter to School
Student suffers from a neurological disorder caused by post infection encephalitis caused by a neurological autoimmune issue—P.A.N.D.A.S. This disorder has both physical and psychological manifestations that affect Student’ education. These manifestations have caused Student difficulties in the classroom, with peers and with instruction. We are requesting that his handicapping condition of OHI be changed from ADHD to neurological disorder caused by post infection encephalitis.
The following symptoms, as discussed at both Parent’s before school meeting with administrative staff and at the parent/teacher meeting during the 1st 9 weeks, are part of Student’ disorder:
• Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)
• Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look" o this includes for Student a startle reaction when he is surprised or has an unexpected contact with another person
• Motoric hyperactivity, abnormal movements, and a sense of restlessness
• Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations o this includes for Student touch, too much information at a given time
• Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas
• Increased urinary frequency
• Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide.
• Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms) (NIMH 21012)
P.A.N.D.A.S. is a disorder that waxes and wanes over short and long term periods of time. It should be noted that many of the manifestations arise from a lack of stamina due to neurological issues from the post infectious encephalitis.
Student takes a variety of medications to control the symptoms of this disorder. These medications make him tired and reduce stamina. Medication is also taken at school and needs to be administered on a regimented schedule.
When exposed to contagions, Student reacts easily. These contagions act as triggers for all of his symptoms.
Physical Manifestations
1. Pale, wan face
2. Red cheeks
3. Enlarged pupils
4. Slack facial muscles
5. Statements of not feeling good
6. Loss of motor coordination
7. Exhaustion
8. Tics
9. OCD
Behavioral Manifestations
1. Fight or flight response to sudden stimuli
Triggers:
Sudden loud noises
Unexpected touch
Surprise
Yelling
Harsh tones
Too many people in small spaces
2. Staring (not paying attention)
3. Poor stamina results in Attentional issues
4. Lack of short term memory
5. Fidgeting (OCD)
6. Disorientation
7. Confusion
8. Reduced decision making abilities
Tic
1. Breathing—sounds like he is having difficulty getting air into his lungs
2. Full body manifestation—shakes the whole body, unable to control movements
3. Random movements—tapping, wiggling
4. Staring
OCD
1. When given a schedule he cannot deviate from it
2. Body must feel exactly right
3. Must complete one task before moving to the next
4. Picks at blemishes on his skin to make skin smooth
Self Calming strategies for TIC and sometimes OCD
1. Water—from his own container never a public fountain
2. Walking
3. Nurse visit
4. Calling parent
5. Quiet refuge—CMC
Accommodations for all classes including Electives and PE
1. Extra supplies in each class
2. Work to be left in class when unfinished and to be worked on in subsequent days
3. Limit amount of work required to be completed in 1 class period
4. Eliminate crosswords, word finds, other assignments with visual confusion on page
5. Give oral instructions 1 step at a time
6. Give written instructions with ample white space on page
7. Remove distractions a. Too much on paper, board
b. Too close to peer seating
c. Too many papers, lists, etc
8. Allow transition time between activities in the classroom and between classes
9. Unlimited access to nurse, counselor, water, restroom
10. Allow to carry small bag on back for water bottle and pencils
11. Provide a refuge area for quiet place to escape distractions
12. Use of calculator, math fact sheet, smart pen, lists for work and tests
13. Extra time for handwritten projects in class
14. Oral testing for all tests including retests
15. Use of word processor, graph paper
16. Shorten all assignments
17. Extra time for tests
18. No zap penalty for missing or incomplete homework
19. Monitor ’s stamina
20. Allow breaks when stamina is reduced
21. Provide parent with electronic copies of worksheets, reviews, projects prior to assignment date
Not all teachers and administration were receptive to this, but we count even one person learning something new as win in the P.A.N.D.A.S. battle!
Letter to School
Student suffers from a neurological disorder caused by post infection encephalitis caused by a neurological autoimmune issue—P.A.N.D.A.S. This disorder has both physical and psychological manifestations that affect Student’ education. These manifestations have caused Student difficulties in the classroom, with peers and with instruction. We are requesting that his handicapping condition of OHI be changed from ADHD to neurological disorder caused by post infection encephalitis.
The following symptoms, as discussed at both Parent’s before school meeting with administrative staff and at the parent/teacher meeting during the 1st 9 weeks, are part of Student’ disorder:
• Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)
• Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look" o this includes for Student a startle reaction when he is surprised or has an unexpected contact with another person
• Motoric hyperactivity, abnormal movements, and a sense of restlessness
• Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations o this includes for Student touch, too much information at a given time
• Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas
• Increased urinary frequency
• Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide.
• Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms) (NIMH 21012)
P.A.N.D.A.S. is a disorder that waxes and wanes over short and long term periods of time. It should be noted that many of the manifestations arise from a lack of stamina due to neurological issues from the post infectious encephalitis.
Student takes a variety of medications to control the symptoms of this disorder. These medications make him tired and reduce stamina. Medication is also taken at school and needs to be administered on a regimented schedule.
When exposed to contagions, Student reacts easily. These contagions act as triggers for all of his symptoms.
Physical Manifestations
1. Pale, wan face
2. Red cheeks
3. Enlarged pupils
4. Slack facial muscles
5. Statements of not feeling good
6. Loss of motor coordination
7. Exhaustion
8. Tics
9. OCD
Behavioral Manifestations
1. Fight or flight response to sudden stimuli
Triggers:
Sudden loud noises
Unexpected touch
Surprise
Yelling
Harsh tones
Too many people in small spaces
2. Staring (not paying attention)
3. Poor stamina results in Attentional issues
4. Lack of short term memory
5. Fidgeting (OCD)
6. Disorientation
7. Confusion
8. Reduced decision making abilities
Tic
1. Breathing—sounds like he is having difficulty getting air into his lungs
2. Full body manifestation—shakes the whole body, unable to control movements
3. Random movements—tapping, wiggling
4. Staring
OCD
1. When given a schedule he cannot deviate from it
2. Body must feel exactly right
3. Must complete one task before moving to the next
4. Picks at blemishes on his skin to make skin smooth
Self Calming strategies for TIC and sometimes OCD
1. Water—from his own container never a public fountain
2. Walking
3. Nurse visit
4. Calling parent
5. Quiet refuge—CMC
Accommodations for all classes including Electives and PE
1. Extra supplies in each class
2. Work to be left in class when unfinished and to be worked on in subsequent days
3. Limit amount of work required to be completed in 1 class period
4. Eliminate crosswords, word finds, other assignments with visual confusion on page
5. Give oral instructions 1 step at a time
6. Give written instructions with ample white space on page
7. Remove distractions a. Too much on paper, board
b. Too close to peer seating
c. Too many papers, lists, etc
8. Allow transition time between activities in the classroom and between classes
9. Unlimited access to nurse, counselor, water, restroom
10. Allow to carry small bag on back for water bottle and pencils
11. Provide a refuge area for quiet place to escape distractions
12. Use of calculator, math fact sheet, smart pen, lists for work and tests
13. Extra time for handwritten projects in class
14. Oral testing for all tests including retests
15. Use of word processor, graph paper
16. Shorten all assignments
17. Extra time for tests
18. No zap penalty for missing or incomplete homework
19. Monitor ’s stamina
20. Allow breaks when stamina is reduced
21. Provide parent with electronic copies of worksheets, reviews, projects prior to assignment date
Not all teachers and administration were receptive to this, but we count even one person learning something new as win in the P.A.N.D.A.S. battle!