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School Refusal Hasn't Resolved


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DS12 had sudden severe onset of PANS 3 years ago while sick with pneumonia. After almost 2 years of Lyme/Bartonella/Babesia/Staph treatment, many of his symptoms have completely or mostly resolved. He had rages, severe separation anxiety, severe OCD, insomnia, bipolar-like mood swings, phobias, aversions, mild food restrictions, and other issues I (thankfully) cannot think of right now. He is not completely well yet, but in most ways we have our lives back and I am so grateful. However, the one problem that hasn't budged is school anxiety/refusal. He misses anywhere from 1/2 day to 3 days a week due to school refusal, with a typical week being 1-2 missed days. He is also frequently ill at times (a lot in the fall, but not as often in the spring this past year), which adds to his absences. Our school has been proactive and compassionate about working with us/him, but nothing we've tried has had lasting results. He's going into 6th grade and the principal has warned me that the pace is going to pick up and he will have 5 teachers now, so it will be very difficult for him to do well academically if he is missing a lot of school. I have tried to find an expert on school refusal in our area, with no success so far. We are in the SF Bay Area.

 

If anyone has dealt with this problem or has any suggestions, please let me know. I am desperate for help/solutions and school is now 6 1/2 weeks away. Maybe its time to try anxiety medication? So unsure what to do.

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Mama2-

 

We had school refusal with my older dd, 5th grade at the time. She had a pandas exacerbation, which caused a myriad of symptoms at the time. We treated her with steroids, and all of the symptoms cleared, she was totally back to herself EXCEPT for the school refusal. She had a clear ocd (fear of vomiting at school) issue, and although we worked with local therapists, and she did push herself to go much of the time- she was miserable. We went to USF for three weeks of therapy and they knocked it out. She has not had a bit of this issue since- thank goodness.

 

I feel for you- there is worry on so many levels when they don't go to school: academic, social, self- esteem- not to mention getting some time away as a parent.

 

Can you pin down a clear reason for the anxiety? Do you think this is ocd based?

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We are looking into an online program called K-12 and it is an online free public school program. We are both needing to work now to pay for the medical expences of 3 PANS boys. Only the son entering 7th is struggling with the stress of school. We may see if we can hire a retired teacher to work a few hours a week with him and some studies we could do in the evenings after work. We haven't worked out the details by any means yet!!! I may see if grandma can stay with him....??

 

Maybe this is an option to look into.

 

Good luck, I understand,

Linda

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we had school refusal as one of our big issues at onset duirng preschool. it has waxed and waned -- initial treatment with keflex brought 100% remission and school refusal melted away. symptoms came back and school refusal, too. the following year, kindergarten, behavioral issues and school issues but not so much school refusal. next year, 1st, was homeschool b/c trying to sell house, thought it would be short term -- was the whole year. last year, 2nd, was disastrous. began with school refusal and we did a ERP like plan of walking in -- was getting better but many problems surfacing -- spelling test anxiety, writing anxiety, thought generation anxiety. i believe these things could have been dealt with with special ed and ERP plans. school officials didnt' get it -- even though anxiey diagnosis AND pandas diagnosis. they saw a regular 7 yo who they thought was 'manipulative' and just wanted to be with his mom. they saw he was 'fine' once he got into the classroom -- they didn't get it that those were the times he allowed himself to go in to the room. a few disastrous days. was on home teaching from Nov - end.

 

with cognitive testing, ds is the picture poster child for 2E. now, any person with common sense who looks at his profile can see school would be horrible for him -- he's 2nd grade age, math and other skills 4th grade or above, writing and working memory skills more like 1st or kindergarten. he was saying, 'eveything is too hard or too easy.' now we have something that backs up what he means. still -- i've very worried about school and how much help we will get, how much they will put him in a 'troublesome behavior' box rather than seeing it's an issue of how his brain functions. i feel he'd be better off in school with a PDD or asperger diagnosis, although those are erroneous for him.

 

could there be something like this for your son? maybe there is something that is 'reasonable' for him to refuse school but it's gotten all mixed up with the other symptoms and became patterns?

 

on a little of another vein -- i was recently talking with a very savvy PT who also does cranial sacral - which we did in the past with ds, i think we saw some benefit but we changed our treatment a bit -- i intended/intend to do it again, just haven't yet. when discussing ds, she said, "what happened to the working memory?". now, she's not working with ds but in hearing his story, it made sense to her, that something happened, it wasn't jsut that he has trouble with working memory. i think that's where pandas has had more of a long term effect -- kind of in the sense like a stroke may efffect function -- i think either in lack of proper development or something, that area of brain function has been effected for him . it's very odd, b/c he shows trouble with working memory in some ways -- like not able to remember his whole thought to write it down, but he can do math work in his head.

 

the point i'm trying to make -- 'regular' expectations from a typical age appropriate classroom are a nightmare for him. could there be something like this at play for your son?

 

all that said -- i very much feel my end goal is to provide the support he needs to get him to speed to be able to function under those 'regular' expectations without extreme accomodations. i feel he needs the support now to get there or he'll always be behind and/or in need of accomodations.

 

2E kids often fly under the radar b/c their strengths in some areas kind of counteract their deficits in others so they APPEAR to be age level -- however, they need extra challenge in some areas and extra support in others and they're really falling apart while it looks like they should be able but aren't trying.

 

 

and a HUGE thank you to EAmom, who first ever introduced me to the concept of 2E a number of years ago!!!! and Dcmom for last year suggesting there may be more at play with ds's school anxieyt. thank you to all the wise members of this forum and Shiela for creating it!!

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DCmom, Its so surprising and strange that your dd cleared all symptoms except school refusal. What did USF say about this and how did they help her? We would be willing to go out of state for help, but I had assumed a therapist would need to work with him while he was attending school, and that it would be a much longer process than 3 weeks. Yes, we are worried about all the things you mentioned. As for the exact reason for the anxiety around school, it is murky and can change daily. He seems to have panic attacks right before drop off on the days he doesn't get in. He had a rough time with his teacher this past year, and he does struggle to get along with a few of the kids. I also think on some level, it is OCD - its become a habit to react to anxiety by not going to school.

 

Thanks for your response. If you have a minute, can you provide some info on the USF program, and whether you think it would be appropriate for us?

 

Mama2-

 

We had school refusal with my older dd, 5th grade at the time. She had a pandas exacerbation, which caused a myriad of symptoms at the time. We treated her with steroids, and all of the symptoms cleared, she was totally back to herself EXCEPT for the school refusal. She had a clear ocd (fear of vomiting at school) issue, and although we worked with local therapists, and she did push herself to go much of the time- she was miserable. We went to USF for three weeks of therapy and they knocked it out. She has not had a bit of this issue since- thank goodness.

 

I feel for you- there is worry on so many levels when they don't go to school: academic, social, self- esteem- not to mention getting some time away as a parent.

 

Can you pin down a clear reason for the anxiety? Do you think this is ocd based?

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Thanks Linda. I would be interested in what you think of the K-12 program - I've heard good things. For now, I'm looking at homeschooling as a last resort. Is your 7th grader having trouble getting into school? Is that why you are considering homeschooling?

 

We are looking into an online program called K-12 and it is an online free public school program. We are both needing to work now to pay for the medical expences of 3 PANS boys. Only the son entering 7th is struggling with the stress of school. We may see if we can hire a retired teacher to work a few hours a week with him and some studies we could do in the evenings after work. We haven't worked out the details by any means yet!!! I may see if grandma can stay with him....??

 

Maybe this is an option to look into.

 

Good luck, I understand,

Linda

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Thanks Smarty (I've always thought that was a very apt screen name for you :P) What is a "2E" kid? This does in many ways sounds like my son. Can you tell me more about this or do you have a link? In terms of schools, I don't think an asperger school would be the right fit for him. He gets along very well with "typical" kids, although he radiates toward the ones I can see have some subtle issues. If we keep him in a typical classroom, his current school is the best place. I have looked at a one-on-one school (Fusion Academy), but its expensive and I think most of those kids are at the end of the line, so I hesitate to put him there. Beyond that, I think homeschool would be our last resort.

 

we had school refusal as one of our big issues at onset duirng preschool. it has waxed and waned -- initial treatment with keflex brought 100% remission and school refusal melted away. symptoms came back and school refusal, too. the following year, kindergarten, behavioral issues and school issues but not so much school refusal. next year, 1st, was homeschool b/c trying to sell house, thought it would be short term -- was the whole year. last year, 2nd, was disastrous. began with school refusal and we did a ERP like plan of walking in -- was getting better but many problems surfacing -- spelling test anxiety, writing anxiety, thought generation anxiety. i believe these things could have been dealt with with special ed and ERP plans. school officials didnt' get it -- even though anxiey diagnosis AND pandas diagnosis. they saw a regular 7 yo who they thought was 'manipulative' and just wanted to be with his mom. they saw he was 'fine' once he got into the classroom -- they didn't get it that those were the times he allowed himself to go in to the room. a few disastrous days. was on home teaching from Nov - end.

 

with cognitive testing, ds is the picture poster child for 2E. now, any person with common sense who looks at his profile can see school would be horrible for him -- he's 2nd grade age, math and other skills 4th grade or above, writing and working memory skills more like 1st or kindergarten. he was saying, 'eveything is too hard or too easy.' now we have something that backs up what he means. still -- i've very worried about school and how much help we will get, how much they will put him in a 'troublesome behavior' box rather than seeing it's an issue of how his brain functions. i feel he'd be better off in school with a PDD or asperger diagnosis, although those are erroneous for him.

 

could there be something like this for your son? maybe there is something that is 'reasonable' for him to refuse school but it's gotten all mixed up with the other symptoms and became patterns?

 

on a little of another vein -- i was recently talking with a very savvy PT who also does cranial sacral - which we did in the past with ds, i think we saw some benefit but we changed our treatment a bit -- i intended/intend to do it again, just haven't yet. when discussing ds, she said, "what happened to the working memory?". now, she's not working with ds but in hearing his story, it made sense to her, that something happened, it wasn't jsut that he has trouble with working memory. i think that's where pandas has had more of a long term effect -- kind of in the sense like a stroke may efffect function -- i think either in lack of proper development or something, that area of brain function has been effected for him . it's very odd, b/c he shows trouble with working memory in some ways -- like not able to remember his whole thought to write it down, but he can do math work in his head.

 

the point i'm trying to make -- 'regular' expectations from a typical age appropriate classroom are a nightmare for him. could there be something like this at play for your son?

 

all that said -- i very much feel my end goal is to provide the support he needs to get him to speed to be able to function under those 'regular' expectations without extreme accomodations. i feel he needs the support now to get there or he'll always be behind and/or in need of accomodations.

 

2E kids often fly under the radar b/c their strengths in some areas kind of counteract their deficits in others so they APPEAR to be age level -- however, they need extra challenge in some areas and extra support in others and they're really falling apart while it looks like they should be able but aren't trying.

 

 

and a HUGE thank you to EAmom, who first ever introduced me to the concept of 2E a number of years ago!!!! and Dcmom for last year suggesting there may be more at play with ds's school anxieyt. thank you to all the wise members of this forum and Shiela for creating it!!

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Mama --

 

We had school refusal with our DS at age 12, also; this was when the PANDAS really took over his life for a while, and we actually wound up pulling him out of school altogether for a period while we got him some medical treatment and we worked with the school to put together a workable plan for getting him back in. You didn't say: does your DS have a 504 Plan or an IEP?

 

Our DS had had a 504 Plan for a few years based on an earlier OCD diagnosis; when the PANDAS became so extreme and general anxiety, memory problems, etc. joined an increased level of OCD, the school willingly kicked us up to an IEP. Along with the IEP came a designated caseworker for DS, someone he met with every day who was there to help him advocate for himself and navigate his school day.

 

So, once we got the abx underway and he began to improve, we started him back into school. We started with just one class period a day, and we started with his easiest "class," at that: his resource period with his caseworker. So, for a couple of weeks, DS went only to this one class, got his "feet wet" in the school building again, and had a chance to get to know his caseworker and sort of educate his caseworker on the sorts of things that DS would likely need in terms of emotional support during the school day.

 

After a couple of weeks, the caseworker, DS and we agreed that he was ready to step it up and take on another class, so we added on a second class. And we stuck with that schedule for another few weeks until DS was comfortable and doing fairly well in that class, and then we added another class for a couple of weeks. We repeated that process over the next 3 months or so until DS was back in school for a full day, and he's been able to stay in school for full days since.

 

We were very fortunate that his caseworker was a gem and really invested in helping DS manage his "fight or flight" about all the school anxiety triggers: understanding instructions clearly, doing well, having all his materials, being on time, etc. You've indicated that your DS's school is also willing to work with you and help him, so maybe something along these lines will be helpful?

 

Good luck!

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Mama-

 

your inbox is full- here is my pm...

 

I don't know why the ocd stuck after the pandas episode was gone. I do think that sometimes the ocd is so powerful and scary, that even when the medical reason causing it is gone, the kids are afraid to move past it. That being said, the fact that she was "well" is what made the therapy so successful. Had she been in the midst of an exacerbation, three weeks would not have been enough, and would have been really, really hard.

 

DD started with school refusal one day, like the flip of a switch. For a while, she made up excuses and other reasons (things she thought we might be sympathetic to, I guess). The truth finally came out that she was afraid of vomiting in class. But she was terrified beyond a realistic reaction to vomiting, and she thought about it constantly. OCD. We saw a local therapist who had us on the path of moving her back to school slowly (by this time we had put her on homebound instruction- our school was fabulously supportive). DD complied, and went to school one period a day for a week, increasing by a period a week. It was SLOW, and she was miserable. She was complying- but in school she was constantly thinking about her fear. We struggle this way through her entire second half of fifth grade.

 

We were at the end of our rope, (luckily she was doing SO well otherwise) and Meg's mom suggested USF.

 

At USF the psych worked on confronting the actual fear- vomiting in public. We did not need a plan of getting back to school slowly- we needed her to do so much thinking and talking about vomiting that it became boring, and she was no longer a prisoner to her thoughts. She had to: say the word vomit, write the word vomit, say the word to stranger, look at photos of others vomiting, look at videos of others vomiting, make up stories of vomiting in public and at school, read these stories to strangers, make pretend vomit and pretend to vomit in public, etc. Our psych was amazing- funny, smart, compassionate, matter of fact and tough. He told it straight to my kids. It was not the usual nicey- nice- therapist nonsense. Real work got done in each session, real progress was made. We had liked two previous psychs (both with great credentials and experienced with ocd)- but the therapy we got there was a whole different animal.

 

USF is a three week, outpatient, intense, ocd therapy program. You and your child attend one 45 minute session per day, and there is "homework" to practice. The program was covered by our insurance. We stayed (and had a great experience) in the local Ronald McDonald house.

 

I don't know if the program is for you, but you can contact Dr Eric Storch (he is great) and he will be able to tell you if they can help.

 

I am wondering, can you get to what is behind the anxiety. Pushing him to school is only half the battle- getting to the real cause of the anxiety, facing it, and getting rid of those thoughts are what is going to get him over this hump. I regret not getting to USF sooner, and I will never deal with an issue this life- interrupting locally again.

 

Please feel free to pm me....

 

Eileen

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He's at a small private school, and has the equivalent of an IEP/504. This is a VERY interesting concept. How did he keep up with the classes he wasn't attending before you got him back full time? I think if we asked for a plan like this, they might be willing to try - especially if he continues to miss at least one day a week next year. Or maybe we might be better off starting 6th grade this way. Not sure yet, but I'm getting many interesting ideas to work with here. Should have put this out to the forum long ago!

 

Mama --

 

We had school refusal with our DS at age 12, also; this was when the PANDAS really took over his life for a while, and we actually wound up pulling him out of school altogether for a period while we got him some medical treatment and we worked with the school to put together a workable plan for getting him back in. You didn't say: does your DS have a 504 Plan or an IEP?

 

Our DS had had a 504 Plan for a few years based on an earlier OCD diagnosis; when the PANDAS became so extreme and general anxiety, memory problems, etc. joined an increased level of OCD, the school willingly kicked us up to an IEP. Along with the IEP came a designated caseworker for DS, someone he met with every day who was there to help him advocate for himself and navigate his school day.

 

So, once we got the abx underway and he began to improve, we started him back into school. We started with just one class period a day, and we started with his easiest "class," at that: his resource period with his caseworker. So, for a couple of weeks, DS went only to this one class, got his "feet wet" in the school building again, and had a chance to get to know his caseworker and sort of educate his caseworker on the sorts of things that DS would likely need in terms of emotional support during the school day.

 

After a couple of weeks, the caseworker, DS and we agreed that he was ready to step it up and take on another class, so we added on a second class. And we stuck with that schedule for another few weeks until DS was comfortable and doing fairly well in that class, and then we added another class for a couple of weeks. We repeated that process over the next 3 months or so until DS was back in school for a full day, and he's been able to stay in school for full days since.

 

We were very fortunate that his caseworker was a gem and really invested in helping DS manage his "fight or flight" about all the school anxiety triggers: understanding instructions clearly, doing well, having all his materials, being on time, etc. You've indicated that your DS's school is also willing to work with you and help him, so maybe something along these lines will be helpful?

 

Good luck!

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He's at a small private school, and has the equivalent of an IEP/504. This is a VERY interesting concept. How did he keep up with the classes he wasn't attending before you got him back full time? I think if we asked for a plan like this, they might be willing to try - especially if he continues to miss at least one day a week next year. Or maybe we might be better off starting 6th grade this way. Not sure yet, but I'm getting many interesting ideas to work with here. Should have put this out to the forum long ago!

 

 

For the classes he wasn't attending, his teachers would drop worksheets, homework assignments and quizzes off at the school office, and we would pick them up for DS. He would either work on them during his resource class or at home with DH or me. Luckily enough, at that age, he could pretty much teach himself most of the material and didn't need a whole lot of first-hand, original teaching. But when he did, his caseworker would endeavor to set up an opportunity for DS to meet with the teacher during his resource period so that DS could ask questions or get clarification on some piece of the work he wasn't clear on.

 

We'd also structured the IEP, however, in a way that not only gave him extra time for assignments but also helped cull out most of the repetitive, drilling type work and busy work; otherwise, all those assignments would've snowballed and been a major trigger for his "fight or flight" response! We have language in the IEP, as suggested by DS's gifted education teacher at the time (he's 2E, also - that is, "Twice Exceptional"), that read "reduce assignments and assessments for quantity, not content." So the math teacher, for instance, would give him a homework assignment but strike out a good half of the problems that were redundant so that DS could demonstrate his grasp of a concept without becoming overwhelmed and/or bored by the tedium of drilling the same concept in problem after problem.

 

We also had some teachers for subjects like social studies and English who would hand out an article or short story to read plus a worksheet to fill out to demonstrate that the reading had been done and that the student had grasped the primary concepts in the reading; for DS, however, this IEP accommodation resulted in his being excused from completing the worksheets altogether most of the time, with them writing "Read, don't do!" on the worksheet so he'd know it was okay for him to skip the worksheet so long as he did the required reading. Part of DS's E2 situation is that he has a memory like an elephant, so he rarely has to reinforce his learning by filling out those sorts of worksheets, and the teachers came to know that over time. Occasionally, he would want to fill out a worksheet even when it was excused, but yet another IEP accommodation permitting us to scribe for him, meant that he could answer the questions verbally and we could write them down on his behalf, verbatim.

 

To this day, he generally does not take notes in class or fill out those sort of worksheets. But so long as he does well on the quizzes and tests, his teachers don't seem to care.

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one thing that was suggested to us that we didn't do for various reasons but i thought was a good idea was if you are doing abbreviated day - to start with the last class of the day and build backwards -- that way the child goes for a short time but leaves with everyone else rather than leaving on his own... and may have less anxiety b/c he knows its a short time until the natural end of the day - not just a false end of the day for just him.

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Thanks Linda. I would be interested in what you think of the K-12 program - I've heard good things. For now, I'm looking at homeschooling as a last resort. Is your 7th grader having trouble getting into school? Is that why you are considering homeschooling?

 

We are looking into an online program called K-12 and it is an online free public school program. We are both needing to work now to pay for the medical expences of 3 PANS boys. Only the son entering 7th is struggling with the stress of school. We may see if we can hire a retired teacher to work a few hours a week with him and some studies we could do in the evenings after work. We haven't worked out the details by any means yet!!! I may see if grandma can stay with him....??

 

Maybe this is an option to look into.

 

Good luck, I understand,

Linda

Hello everyone

I did K-12 last year for my dd for first grade and I am going to do it again this year also

I LOVE IT !!!!

her teacher was awesome the program is easy to follow if you need help all you need to do is call or e mail there teacher

I just cant say enough goo things about it.. you can set your program up the way you want it

I clean houses so I am off on Monday and Tuesday so those are our big days to get alot done

I work on Wed,Thursday,Friday so my parents help me out with her math and flash cards and reading

so if you work in the day you can do it at night or on the weekends

and the best part about it???? I dont need to say anything to anyone about her

I do have a 504 just because is she has a flair they know what is going on

They send you all the book and everything you need for the year

I had school stuff from one end to the other... LOL

They have sesions with the teachers on line if you cant make it for some reason it is recored and you can do it later

My dd wants to go back to school but I think one more year would be good for her she has been PANDAS free for almost 18 months (knock on wood) 2 ivigs ... and abxs are doing the trick..

hope this post helps

Tracie

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Do any of you see school refusal morphing into camp refusal, restaurant refusal, public event refusal? That's been increasing for us although not as severe a meltdown as school refusal. I believe it's anxiety related - anticipating that the event will be too noisy, crowded, etc. and then not wanting to go out at all. If we can get him there, we have a good chance he'll do fine.

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