School can be a dirty word when it comes to PANDAS/PANS. Or it can at least be preceded by a few choice words whenever it’s discussed. This “PANDAS School Daze Series” will hopefully provide some good tips on making the school year a bit easier. Lesson 4: Real Strategies to Use.
“I just can’t wait until my child’s IEP meeting later today! It’s going to be so much fun!”…said NO PARENT EVER!
No matter how understanding your PANDAS/PANS child’s teacher/school might be, you may find that you will need an IEP (Individualized Education Plan) or a 504 Plan. These are special plans covered under federal law Individuals with Disabilities Education Act (IDEA) and the Free and Appropriate Education (FAPE) provision in the Section 504 of the Rehabilitation Act. Typically, it will be “easier” to get a 504 Plan using your child’s medical condition (which may fall under “Other Health Impairment”) to receive special accommodations. An IEP which requires rigorous documentation and evaluations of progress. The 504 Plan will need to be updated at least each year to be sure the best accommodations are in place for your child and his/her needs. You can find specific comparisons between a 504 Plan and an IEP here.
To begin, you will write a letter to request an IEP/504 meeting, which will start the clock as far as procedural timelines and help you keep accurate records. A team of school personnel will be determined and certain evaluations may need to be completed. You may need a letter from your child’s physician with his/her diagnosis and possibly a list of recommended accommodations. You should come in with some ideas of certain accommodations that you would want to see included in a plan for your child’s specific symptoms.
I’ve been to a few IEP meetings. (Jesse did public preschool for a little while due to a mild speech delay.) I won’t lie…they’re not fun…even when they’re productive, they still kinda suck. And when you get to the meeting, it could seem like the teachers/administrators are ganging up on you. During one meeting my husband and I attended while my son was in public school, there were SEVEN other people in the room. At that time, we had no idea that PANDAS even existed, and it was just the initial formal meeting about Jesse’s behavioral issues that had started the second semester of kindergarten. (I got to attend lots of those “fun” meetings back then.)
During school meetings, do not be intimidated. You might want to bring a friend/relative that can remember details and take notes for you or ask questions if you get do get anxious. You can also hire an advocate to attend meetings with you. Hopefully, you won’t need a lawyer, but that is an option too. Also, you never have to sign any documents that contain statements unless you 100% agree with them. It will also be key to ensure that ALL teachers are aware of the accommodations and meet your child’s needs across ALL subjects.
For general IEP/504 information, the National Center for Learning Disabilities/NCLD has an excellent web site. The NCLD “At School” section covers IEPs, 504s, tips for successful meetings, acronyms/lingo, and more. Understood will have a child’s eye view section with decision guides, You can also check out Wrightslaw for terrific special education and advocacy info. , requesting a meeting in writing to officially get the timeline started, providing a doctor’s letter that includes a diagnosis, and lots of discussion. Your child may be denied, but know that you can appeal that decision.
Understood is a new web site that looks like an AWESOME resource for parents dealing with learning/attention issues. Understood consists of 15 nonprofit organizations joining forces with the goal “to help the millions of parents whose children, ages 3–20, are struggling with learning and attention issues. We want to empower them to understand their children’s issues and relate to their experiences. With this knowledge, parents can make effective choices that propel their children from simply coping to truly thriving.” The site has a Parent Toolkit, access to experts, tons of articles, personalized help based on your child’s specific learning issues and grade level, an IEP Boot Camp, and will have forums and other features. The Understood site has a very cool “Through Your Child’s Eyes” section that lets you experience how certain issues might affect your kid in the classroom. (Click here to see what Attention issues might be like for a 5th grader. It was eye-opening for me!) Seeing exactly how your child experiences certain issues at school might help you suggest better accommodations.
FLEXIBILITY is a big factor in these IEP or 504 Plans since symptoms can wax and wane. The school needs to understand that while your child may not be in a PANDAS/PANS exacerbation or flare currently, that symptoms can arise unexpectedly. This means that sometimes they may need certain supports and sometimes not. “Waiting to see what happens” might not seem like a big deal until your child suddenly develops extreme anxiety, OCD, tics, ADHD, is failing math, and their handwriting is like chicken scratch…all because their sibling just had strep. Making sure the plan is in place is a much better alternative. It can take weeks/months to schedule the meetings, so “waiting” is compounded by that fact.
Teachers also need to know that when a PANDAS/PANS child needs help again after they have been doing well, it is not a setback. There is a tendency to feel in some cases that an educational plan is in place until a child can be transitioned out of accommodations. It is the nature of the MEDICAL condition PANDAS that the symptoms can wax and wane. A child could be in remission and not need any accommodations, but if they were to get a strep infection, there is a chance they could have a PANDAS symptom exacerbation. Additionally, the symptoms can change in each exacerbation/flare, so having some flexible accommodations can be advantageous. As much as possible, proactive measures can head off issues too. For instance, if a teacher notices a child is becoming anxious and/or is ticcing, s/he could allow the student to take a break in the hallway to get composed. Academic declines can occur rapidly in PANDAS/PANS exacerbations/flares, especially with math and handwriting, but having a flexible plan in place, allows the teacher to apply accommodations and limit negative impacts.
There are excellent supports in PANDAS Network’s “School” section. You’ll find letters, handouts, suggestions, and helpful articles in PANDAS Network school section. In particular, I highly recommend that you look at the updated paper Considerations Regarding Academic Accommodations/Compensatory Strategies, and Services for Students with PANDAS/PANS by Dr. Jamie Candelaria-Greene. It lists excellent tips for your IEP/504 meeting, testing considerations, typical areas/functions affected by PANDAS/PANS, an awesome listing of accommodation ideas, and more. This article can really help you determine some of the supports that your child may need and gives great examples.
Want more info for the school? You can find good OCD articles at the Child Mind Institute (PANDAS/PANS article, A Teacher’s Guide to Understanding OCD article). The National Institute of Health’s web site has a PANDAS/PANS page. The International OCD Foundation has PANDAS/PANS related articles and information here. I have a few PANDAS/PANS articles posted here on PANDAS Sucks too. (See previous PANDAS School Daze articles for ideas on what resources to give the school: Lesson 1: Talking to the School, Lesson 2: Symptoms at School and Lesson 3: Impacts on Learning.)
The PANDAS/PANS Facebook Groups are full of knowledgeable parents going through what you are going through. (Just search for “PANDAS” and many groups will appear if you are not already a member.) The ACN/Latitudes online forum also offer great resources. With online groups, not only can you ask parents specific questions about certain accommodations you may need, but check for any files that may already be supplied in the groups. Even a Google search for specific accommodations to help with particular issues will be helpful.
The following are lists from Teachers and Parents about Real PANDAS/PANS Strategies being used in classrooms. Information was provided in a School Survey I conducted June and July 2014. There is some overlap on the lists, but these accommodations were reported as having the “best effects with PANDAS/PANS students”.
Real PANDAS/PANS Strategies to Use from Teachers
- Frequent breaks or small breaks between tasks
- Sensory activities – soothing and calming
- Extra time for assignments
- Removal from loud environments
- Positive behavior interventions
- Redirection <proactive>
- Visual timer
- Give student his/her own space without distraction
- Writing notes for the student
- Allowing student to talk to guidance counselor
- Open communication system with parents
- Allow parents to offer insights/suggestions
- Small classroom setting
- Use of classroom assistant to help PANDAS student
- Use of writing software
- Letting the student read when overwhelmed or anxious
- Letting student leave the classroom when overwhelmed (meet with specific staff member or go to specific place)
- Help student get organized
- Positive reinforcements
- Talking about things the student likes and getting him/her to laugh and see the positive side
- Assisting technology
- Linear (left to right) organizers
Real PANDAS/PANS Strategies to Use from Parents
- Frequent breaks from work or in between tasks
- Private signal with the teacher when feeling overwhelmed
- Ability to leave the classroom and go to a quiet place
- Half day or later start time (shorter school day)
- CBT (Cognitive Behavioral Therapy)
- Modified school assignments (reduced workload)
- Lunch at home or with parent
- Special procedures at school (pick up, drop off)
- Unlimited access to the bathroom (reduces embarrassment)
- Having a parent help/volunteer in the classroom
- Visits to the school nurse or counselor
- Reassurance/Support from the teacher
- Pulling the child out of school when necessary (homebound, homeschooling)
- Allowing assignments to be typed
- Notification of strep in the classroom (also helped the teacher make the connection between strep exposure and PANDAS behaviors
- Proximity to teacher (desk placement, front of the line)
- Use of voice dictation software
- Unlimited time on math/writing tests
- Work broken into smaller segments (chunking)
- One on one review of expectations (assignments, schedule changes)
- Extended deadlines on lengthy assignments
- Assistance with organization and prioritization of assignments/tasks
- Samples of student work provided in advance
- Daily communication between the teacher and parent
- Texting the parent immediately when there was a problem instead of waiting until the end of the day
- Social worker to help with social situations
- Changing to smaller, private school that focused on learning
- Implementation of OT (Occupational Therapy)
- Inclusion in a small, specialized classroom
- Minimal or zero homework
- Preferential seating (classroom, assemblies, lunch, bus)
- Breaks to go out and tic privately
- Private area for tests
- Extra time to complete assignments due to frequent absences
- Checking with student to be sure things do get completed
- White board
- Visual timer
- Written schedule
- Sitting out of activities that cause high anxiety or other issues
- No penalties for tardiness/absences
- Online classes/virtual school
- Positive reinforcements and incentives
- Full time aide
- Snack breaks
- Given extra worksheets in case student makes a mistake [Note: OCD/Perfectionism]
- Curriculum that deals with anxiety & encourages flexible thinking
- Tutoring that starts immediately after being absent (no wait time)
- Quality vs quantity of assignments completed
- Giving the child a card when it seems he is overwhelmed and needs to step out of the classroom vs a verbal cue. It helped him feel like less attention was drawn to him.
- Thera-putty (manipulatives) when in sensory overload
- Developing a reward system that gives the student a goal and a fun activity he enjoys when he is successful
- Student brings own supplies (i.e. iPad) instead of using school equip
- If teacher saw tics were out of control, she would simply walk over and put her hand on student’s shoulder. Would let her choose to step outside of the classroom to calm down.
- Frequent movement breaks
- Advance warning/notice of large assignments and special events or lessons
- Immediate notification of new concerns
- Notice of successes so they could be celebrated right away
Hopefully, these lists of accommodations can help you in any school meetings for education plans. If you have other accommodations or tips that have worked with your PANDAS/PANS child, please share by leaving a comment on this article or send me a message. Remember you can find more strategy options using the resources I listed above.
Next up, we add to the PANDAS School Daze Series with “Lesson 5: Making It Better“. Highlights from the School Survey I completed with PANDAS/PANS Parents and a few Teachers. You might also like Lesson 1: Talking to the School, Lesson 2: Symptoms at School and Lesson 3: Impacts on Learning.
P.S. Is there a specific school topic that you would like to see me cover? Do you have some great PANDAS/PANS school tips to share? Want to share your own personal PANDAS School Daze story? If so, send me a message, and we’ll do what we can to give you the info you need and want. I’m sure we could also easily do a special School Edition of “Your Words: PANDAS Sucks Because….” (Click below to submit your reason PANDAS Sucks when it comes to school.)
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We post these reasons in a blog series.
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.