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 final installment of this “PANDAS School Daze Series” will hopefully provide some good tips on making the school year a bit easier. Lesson 5: Making it Better.
As much as possible, I like to use PANDAS Parents’ own words to explain what the condition is like for families. After all, PANDAS Sucks exists to tell our COLLECTIVE STORY. But since this is my blog, you are usually stuck with my words. Ha Ha! The exception is my series “Your Words: PANDAS Sucks Because…” where you’re invited to list the reasons you think PANDAS totally sucks. (Click here to participate.) And if you ever want to share more of your story, just let me know. Your identity is also safe if you wish to be anonymous.
This final post in the series “PANDAS School Daze” is taken from a survey completed in June-July 2014. PANDAS Parents were asked what schools could do to improve the experience for your family. A HUGE THANK YOU to all of the parents that participated and shared their viewpoints. The survey was to help gather information for a talk I gave to teachers in my state as the Director of Kentucky PANDAS/PANS Support.
PANDAS Parents, you can read through these ideas and get ideas for their own schools. There are many ways that the situations for PANDAS families could be made better. Maybe teachers and administrators will read the responses and be inspired to make positive changes. Here’s hoping that some of these suggestions help can help you as a PANDAS Parent see that you’re definitely not alone in any school struggles. You can also gain hope from those families that reported positively about their schools. School does not have to be so difficult.
Read through these ideas as Summer Break gets started and see if there’s anything to help your child next year.
“Is there anything your PANDAS/PANS child’s school could do to help make the school experience more positive for your family?”
Educate ALL the teachers and personnel at the school about PANDAS.
Have greater awareness that he is a high risk target for bullies and actually figure out he’s being bullied rather than I having to attend events at school and spot the bullying myself. Be more careful about where and with whom he is seated near in the classroom.
Understand the symptoms. It is no use if they say they understand and then say she has org. issues and her math skills are decreasing and we can’t read her handwriting. She needs to be consistent with homework…she needs to focus more…. She had IVIG and they were believers. Teacher called me and said that she is different child!
Be more proactive and less punitive punishment when child has a flare up. Better and quicker communication with me when behavior suddenly changes.
Share the info we have shared with all the teachers and for them to have an understanding of what PANDAS is so that I do not have to educate fully each year…and other kids that are suffering needlessly might be identified!
Wish administrators had better understanding of the condition.
More feedback and be more proactive before issues arose.
Have the school nurse understand her itchy tongue was a tic from pandas and not allergies!
Believe us. Work with us.
They have been great.
Allow sensory headphones in the cafeteria – hopefully next year.
More understanding/less rigid discipline. Son’s teacher was exasperated but accommodating but administration, not so much.
My children have been robbed of their school years and friends due to the reluctance of the staff to believe in PANDAS. If they would have allowed a “safe place”, or a buddy to go to the library or cafeteria with when feeling anxious, there is no doubt that both of my boys would still be attending their public school.
Not at this point but MUCH could have been at an earlier age.
Become more educated about PANDAS – think creatively about how the waxing/waning nature of PANDAS means that treatment planning for this disorder WILL be different – observations and assessments may need to be repeated, accommodations may need the flexibility to come and go – even placement might have to be more fluid than the current system allows.
All teachers follow 504.
Too many kids, not enough teachers.
I wish they would have believed. I wish that the schools would find a way that we could sit down with the entire school staff and explain the illness rather than having to explain it over and over again each semester to a different set of teachers that actually make it to the meeting. I wish that they would drop the HIPPA rules and allow us as parents to tell the teachers and staff the names of their illnesses and how it affects their education skills as well as their life. I also wish that at the High school level they would have set up a buddy system to keep the kids connected. My son was not a super popular student but he was well respected by many when it came to working with him on projects…they wanted that guaranteed A. Once he got sick, the staff did not say where he was (HIPPA rules) The IEP staff refused to help connect him with a couple of other students who would just come and maybe play a video game or play basketball in the driveway or just give a phone call once a week. Also I wish they would stop telling our kids they could quit and make them feel unworthy or useless, they still have feelings. The district also should actually help and not cause further financial burden when they turn us in for Attendance issues, or refuse to meet to even set up an IEP. They should know the rules, we are parents dealing with a child that suddenly becomes sick and the personality changes are not always signs for depression or a lazy student. They need to keep more open minds, help these kids stay connected rather than treat them like they are second thoughts or worthless.
Acknowledge it as a long-term condition and offer accommodations as needed rather than just telling me they can’t do anything because it is transient in nature.
We love the school!!
Not really. Dd [darling daughter] just finished 6th grade. Did very well. I have a relationship already established with the 504 planner from DS attending the school prior.
Acknowledge that she requires a different approach to the whole school experience based both on her medical needs as well as her proficiency levels. Allow her to accelerate so that she can complete her schooling at her own pace. Keeping her with her class is actually holding her back.
When he was out of school for extended absences, it would have been nice if the school could have coordinated his work with the tutor better. There was a lot of miscommunication about requirements, workload, and the way in which he was to be instructed. It was a nightmare. When we were trying to transition him back into the school (in non-stressful situations to reduce school and separation anxiety), they denied him access to his extracurricular. OCR was called, resulting in sanctions against the district. Sadly, this poisoned the working relationship between the home and school, making an already very difficult and worrisome life much more difficult.
In the beginning, I wish I had seen more understanding from the school. This particular student was diagnosed after I had been through the process twice with other kids, so it went smoothly. But early on, before PANDAS was even a thought in my head, he was “labeled” as a problem. This had an impact on his own feelings of self-worth, and I didn’t yet know just how sick he was. He still struggles with thinking he is dumb, even though he has a 3.8 GPA.
They have been extremely accommodating, proactive, considerate, and creative. They have also expressed interest in learning more about PANDAS/PANS. We have been very fortunate to have an extremely positive school experience.
Stop blaming parents.
Require teachers to provide accommodations consistently – this wasn’t the case which was stressful Demonstrate understanding of the toll that this illness takes on the child and his or her the whole family. Because the illness was largely invisible to the staff and my child’s academic achievement remained quite high, we were often regarded as a family who was “working the system” (cheating) when, in fact, we were heralding a devoted student through a horrible illness. I hated the school for this!
We need to be ready to be creative from the get-go. School was slow to respond this year. One of the teachers helped flag that my son was regressing again and she put me in touch with the correct administrator so his school schedule could evolve as he got sicker. It took us a long time before I realized my son was having complications with sub-clinical Addison’s symptoms on top of his PANDAS struggles (which we thought were easing up).
We are lucky and have a good school.
They have been responsive and helpful.
We are leaving public school for private school next year – I didn’t want to fight with school any longer. This is largely due to principal.
Believe the parents and psychologists first and foremost. If a child is not screaming, acting out, or crying…. do not assume that everything is ok. No parent wants their kid to have a disability. If they are asking for special help, they are struggling and just need support.
Re-education to all teachers about any learning disabilities/challenges. ADHD, OCD, sensory issues…. and giving them plans or tools for helping. Right now it only seems like education “specialists” have this training.
My school has been wonderful. At the peak if his exacerbation he was allowed to sit in the homeschool coordinators office. At that time he had extreme separation anxiety and issues with shoestrings.
I can’t think of anything. The schools did everything they could to make sure our kids passed while holding them accountable to learn with their limitations.
Better listing of homework before it is due so we can stay on top of it, not try to fix things once they are already past due or after a failed test.
Implement what they document. Don’t just agree to our requests, but actually implement them. Don’t say “let’s see how the year goes,” but proactively work with the recommendations we have from neuropsychologists and occupational therapists to put a plan in place before he slips into a flare.
If I had one wish it would be that our school would accept and embrace my daughter’s diagnosis. In that acceptance, like cancer or any other medical issue they would learn as much as possible about PANDAS and how that affects my child. That just because she looks normal and seems smart doesn’t mean she’s not struggling terribly. I personally have a rare brain disease and have a brain shunt as a result. To look at me you wouldn’t know I suffer daily pain, fatigue and cognitive issues but, I also don’t wear my shunt on the outside of my body. The scars of an illness can’t always be seen, but the help that is needed and required is no less because of that. My child needs a school that is willing to do whatever it takes to help her through this terrible period of her life. She needs a district that can think ‘outside of the box’. A hybrid approach…online courses, Skyping into class, smaller segmented workloads, individualized testing, inclusion in extracurricular activities should the child choose to participate barring academic or attendance records…whatever it takes. Policies are meant to be followed, not followed blindly. Students with PANDAS need an individualized plan, patience and understanding. Remember, they haven’t forgotten who they once were and the life they once had. Their dreams are still the same. It’s their body and mind that has betrayed them. Don’t punish them for not being the student they once were. They aren’t bad kids. They aren’t mental kids. They are sick kids. PANDAS is a MEDICAL autoimmune illness NOT a psychiatric disease.
Ensure to follow IEP accommodations.
In all honesty they have tried (both school districts in which we’ve enrolled). When the symptom severity reaches a certain point….our child is not capable of completing schoolwork. She cannot read, write, recall information. School waits until symptoms abate to a degree to which completion of school is reasonable to expect. If I could comment as to how helpful I think the schools could be….this would relate to early recognition of symptoms. Teachers see children daily for many hours per day. When they witness a child’s function deteriorate or observe symptoms like tics, repetitive movements, rigid thinking…although they are not doctors they should at least be able to share their observations with the family so that a doctor could be seen for a PANDAS/PANS assessment. Teachers, along with parents, are the first line of defense in catching this disorder quickly; doctors are the next line of defense for immediate treatment. When neither occur due to considerations of the child’s behaviors being “a phase”, normal kid stuff, “caused by the changes in family life”–i.e.: a move, divorce, new baby, precious moments, days, weeks, and months of proper treatment are lost and children’s’ lives are literally stolen from them.
They could have a “buddy bench” out in the playground yard. All last year our son would say how he would have no one to play with and would wait to line up to go back inside. He went to the guidance counselor and told his teacher many times. I know we did as well. Kids can be so mean and cruel to others when they have “special needs”.
When there is an outbreak of strep to let me know. There must have been an outbreak 2 or 3 times last year and it affected my child.
They are very accommodating to my son’s needs. They have been amazing. A bit more communication home would be good, but his teacher is busy. I hear if there is an issue but every so often she remembers to tell me all is well too. 🙂
Our school was great in working with us.
Educate themselves on what PANDAS really is and what it is NOT. It is not a bad child that is spoiled and disrespectful, it is not a child that enjoys this behavior, and it is not personal. Work with the family and good compromises that everyone can be comfortable with. Do not try to push medical advice on Parents.
We were very lucky. My daughter’s teacher was fantastic- as well as the Guidance Counselor and School Psychologist. Her teacher was the one who suggested the 504 Plan and was extremely supportive. My daughter’s behavior issues (mainly rages) came out at home so the school never witnessed that side of her PANS.
I wish they had been accommodating on attendance. They would not allow partial days or flexible schedule and reported us for truancy.
We’ve looked at two different self-contained classrooms at different buildings. BOTH of them had very negative/punitive types of environments. To make things more positive, they can get off the punitive kick, and realize this for the illness that it is and STOP looking at everything as “behavioral”. These kids have extremely sensitive systems which need a calming nurturing environment at ALL ages K-12 not a forceful threatening environment, where they are being accused of being “manipulative” among many other things.
Making sure ALL teachers are at an initial IEP meeting and have a basic understanding of PANDAS and how it can manifest. Having some teachers and counselors educated and others completely refusing to communicate caused problems in a few classes. Not being aware of IEP accommodations also affected grades at times.
We would like more time in the regular ed classes to help keep him from getting behind in his studies.
No I was very happy with all they did for us. We are now going into Jr high and I am not so sure if the school is going to be as good with us. I guess we will have to see once school starts. :/
We are very lucky to have an NPS school that knows about PANS, including around diet and allergy issues, as well as recognizing triggers for all of above symptoms.
Better transition support from grade to grade; quicker response to tightening up supports for flare ups.
If you have other ideas of how schools can make things better for PANDAS/PANS Families, leave a comment on this article. Or you can message me and I will update the article with the additional suggestions.
I hope this “PANDAS School Daze” series was helpful. The five lessons included: Lesson 1: Talking to the School, Lesson 2: Symptoms at School and Lesson 3: Impacts on Learning, Lesson 4: Real Strategies to Use, and this one, “Lesson 5: Making It Better”. I’ll continue to post more about PANDAS/PANS and School. There are tons of things to say about PANDAS/PANS and School. If you ever have specific issues you would like to see covered, please do not hesitate to send me a message.
I wish you and your PANDAS/PANS child a super summer and peaceful school days next year. May your kids learn much and also teach others.
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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.