School anxiety/ refusal

[dcmom]

Many of you know our story. I have two pandas girls. They had been in remission for 9 and 14 mos, and then relapsed right before Christmas.

 

Things are MUCH better now, after iv steroids. They eat, sleep, cooperate, hVe fun, and their personalities are back. We have relative peace and calm. They are left with OCD, and separation Anxiety. The sep anxiety is causing major school anxiety in two girls that love school. One is 10, one is 7.

 

What to do when they outright refuse to go?

 

The 10yr old has told me she wants to listen to me, and make me happy, but the fear and misery of school is too strong. So far, I have been able to talk or threaten her into going. I wasn't successful with the 7 yr old today, she stayed home, so I know this is going to give the 10yr old more reason to push tomorrow.

 

I can't, nor would I feel good about physically dragging them to school. Rewards will not work, and I don't feel good about punishing a kid whose self esteem must already be suffering.

 

She does well at school, and does come home in a good mood.

 

I need practical help. We are seeing a psychologist to help us next week, but

 

how far do I push it to get them to go

 

any tips or tricks

 

what if they don't go

 

what do I tell the school

 

and I am concerned about too many absences

 

Thanks!

Eileen

[smartyjones]

Eileen -- glad to hear they are better after the steroids. i can only share a few things that worked for ds last year. he was younger -- kindergarten -- and was ahead 'academically' (seems silly to use that word with kindergarten) , but he was a very strong reader and good at math so school was not as much a concern for learning than social for him whereas your girls are older so i understand there is more importance.

 

at it's worst around onset and then with first relapse(preschool, age 4) -- i think nothing would have gotten him there. he would have gladly walked into a burning forest rather than go into the school. i feel you're pretty good at gauging for your girls when they're this bad or not.

 

a behavioral therapist we saw at this time was the one who actually diagnosed him. at one of our appt, i remember her saying to me as she was trying to get a handle on him. . . "is it as if he just can't bring himself to do it?" it was one of those moments -- yes,yes,yes, yes! that's exactly it. it's not defiance, it's not pushing my buttons, he's not trying to get his way. . . he just can't bring himself to do it.

 

also one time in the beginning, after a few days of carrying, kicking and screaming, before diagnosis, i calmly told him i couldn't allow him to use such bad manners with yelling and kicking and if that was what he'd do, he'd have to come home and read in his room. he silently stayed in his car seat as we dropped off brother. about 1/2 mile away, a quiet, sweet, introspective voice from the back said, "mama, i don't remember why i don't like school."

 

so. . . our deal that first year became -- preschool, age 4, almost 5 -- if he didn't go to school, he had to read and do activity books in his room. he gladly complied. it was the lesser of two evils. of course, it was only half day - so not really too much time.

 

last year, we made deals -- of course, this can be a slipperly slope but he always complied if he made the deal. "if you stay home today, you MUST go tomorrow." and he would. but that can easily go bad as one day, turns into 2, turns into 3 . . .

 

so, i'd say first, really think about your expectations and what you could be happy with. . . such as, are you really concerned about their academic progress? i mean, if you had her doing work at home for 2-3 hours, could you think that would be a good compromise and not stress you out about losing education? decide where you have to draw the line. (i always try to remind myself that Sammy lost , i think, 5th and 6th grades but went to college with his same age peers) you could set up some things at home that would be a type of home school so they wouldn't miss out academically.

 

set up some boundaries about what will take place at home. "if you don't go to school, you must complete X". not a punitive way, just matter of fact. . . choose A or B. or if you're concerned about social interactions, it can be with that also.

 

you're much more skilled in ERP than I, but maybe some plan like, "if you don't go to school today, we must walk into the building and tell the office" -- whatever,you'd know what would work. check out anxietybc.com for worksheets that you can write the steps on. rewards have never been a motivator for my ds, but he has liked filling that page and getting a small reward -- it's an added bonus, just making us both feel good about it, not a motivator.

 

please keep us posted on how it goes.

[airial95]

My guy is younger, only 3, but he is in a special ed pre-K program through the school district since many of his issues revolved around school (day care) - most especially severe seperation anxiety and refusal.

 

We worked with the school and the IEP to get certain accomodations. We have his aide meet me at the front of the school at drop off. She takes him inside - regardless of the screams/kicks/fighting - she just picks him up and goes (a bit easier with a little guy - may not work for a 7 year old). Once inside, she gives him the option of settling down and going to pick his own breakfast (he has fixations on food - that's a big deal that he would be able to go and pick whatever it is he wanted) or they can go to a quiet place for him to settle down.

 

This has been a slippery slope for us, because the sure fire way the aide has been able to calm him is by allowing him to even pick his breakfast items in a group of 3 if he's REALLY freaking out. This is one of the major fixations we're trying to break with ERP - but we've found that in this case, using it as a reward has helped, and it hasn't hindered his progress with that goal in other areas. He knows he's not supposed to have things in 3's - but the mtivation of being able to have that compulsion satisfied seems to override the school refusal thing.

 

We've gotten good enough at this that if he's freaking out in the car, I keep reminding him that Ms Brown won't like to see him like that, and if he doesn't settle he might have to go to a quiet room instead of breakfast. I may get screaming for the first 10 minutes of the 15 minute car ride, but usually by the time we get into the school parking lot, he's settled. I've only had to take him in like a wild animal 2x since the holdiay break.

 

The key thing for us was the school staff - when we explained the issue, we were told quite clearly that they were there to help, let them do their jobs. If we can get him into the car everyday - they will get him out. And they made a push for us to commit to try bringing him even when he's at his worst. Since he's been in the program with this aide - he hasn't missed one day of school because of anxiety, and he's thriving in the program (very few behavior issues compared to the other setting).

 

I don't know if this helps - but it's worked for us.

[browneyesmom]

Sigh... if I only had a dollar for every time I have struggled with this one, I'd be one wealthy woman right now!

 

I have dragged her out of the bed, dressed her, bathed her, pried fingers off toilet seats... you name it. I'm sure all of you have as well. Her recent exacerbation became so bad this year, that we pulled her out mid-Dec and put her on home-bound. She gets little work done and is way behind, but at least she is getting some of it done and we have continuity as we are blessed to have her math teacher doing home-bound - he volunteered. I couldn't speak for a moment, I was so shocked & thankful.

 

I think you have to weigh the overall situation. I pressed her first quarter this year and she made honor roll... but it came at a cost that I would not repeat.

 

For absences, ask your pediatrician to write a letter to the school for you, indicating he is treating her and to be patient with her absences/tardies. For the school, the main issues for them tend to be legalities.

[kferricks]

My DD just turned 11 in Nov. She came home the first day of school with sudden onset. I drove her to school for about two weeks. When I realized it was just too much for her (and me) I went to the school and had a conference with the principal and social worker and told them what was going on. They suggested a 504 plan. I left and took her to a psychologist who sent the paperwork stating that she was not to attend school until further notice. So the school set us up with homebound schooling. I think the kids have enough going on without the added stress of trying to get through school and not be contaminated.

[wornoutmom]

My ds15 developed school refusal at age 12 during an exacerbation.. Here's what didn't work: threats, begging and pleading, changing his morning routine (i.e going out to breakfast before school, waking up to ice cream in bed, sleeping in his clothes so he'd just roll out and go - crappy suggestions from a crappy therapist.) We also tried gradual re-introduction of one hour at a time - didn't work either. What finally got him back to school after 3 months was a combination of getting him an IEP so he had support at school and reduced stressors, and a daily reward system/contract (new therapist). We basically gave him a point for each hour he was able to remain in class. Then I bought a ton of junk from the dollar store and set up a prize box. Each prize had a point total, so depending on how many hours he was able to be in school (and not home or the counseling office)he could pick out prizes at the end of the day. Additionally, if he made it to school something like 85% of the time the next 3 months, he got a big reward (for him it was a small tv for his room). For us, it gave a concrete way of acknowledging how hard it was for him to be at school, and rewarding him for his hard work at sticking out the anxiety instead of running from it.

[browneyesmom]

I like the reward system, WornOutMom... dd11 is on home-bound, but I think I may start doing something like that at home as even that has been tough for her lately.

[Luna2]

I am so sorry your girls are having such a hard time right now. I have found the school refusal and seperation anxiety very difficult to deal with. We have a dd13 who just went through most of Dec. refusing to go to school. This was the most extensive bout in the 5 years of PANDAS. We decided that for many reasons it is important for her to be at school - self-esteem, our jobs, etc. Since elementary school we have enlisted the schools help. When she was younger, we would go to school (getting her in the car was a challenge) and sit on the steps of school, or walk around the block (we live in Northern CA)or go to the office or the school library and one of us would stay with her until she could go in to class. Sometimes a friend or teacher would come by to help. We also did relaxation exercises, breathing and Klonipin if needed. We also used nerve tonic cell salts which seemed to help some when she was younger. This year (7th grade) we have developed part of her IEP to address this. The school counselor comes out to the car to help her. Usually she will go to their office and play games until she is calm enough to go to class. This all can take a couple of hours. Sometimes we stay and sometimes she lets us go. Low dose zoloft has also helped with the anxiety. When all else fails, she comes to work with one of us. We try to make the time with us a little uncomfortable and especially boring. Our daughter is back in the groove right now. Hurray. To see her, you wouldn't know she was the screaming in the car last month... This week we are dealing with the school and all of the missed work. Dealing with schools is right behind dealing with doctors and PANDAS. Good luck. Let me know if you need more specifics.

[LNN]

We don't have full blown refusal with DD6 but she was starting to have panic attacks as she got ready for school until she got on the bus. While she loves school, the OCD fairy would tell her that she would have a terrible time, no one would be nice to her, she'd miss me, etc. Some days, she got really really upset. It killed me, but I was determined, if at all possible, not not let the OCD win. So we focused a lot on making the OCD fairy the enemy and how awful it was that this mean fairy wanted to take away the joy of going someplace that she loved to be. We sang a lot of songs and tried to make DD laugh during the (seemingly endless) wait for the bus.

 

To the tune of Jingle Bells, we sang "I'm not scared, I'm not scared, I'm not scared at all. The mean fairy has a fat butt and I'm going to squash her now-ow" Guess I will have to learn some easter songs soon...something to the tune of Here comes Peter Cottontail...

 

Many days, she got on the bus in tears, with the kids and bus driver having very strange looks on their faces. But every day when I picked her up, she'd be happy not only because she had fun, but because the fairy didn't win. And we'd celebrate. One day I put a large sign on her bedroom door about how she was the bravest girl in the land. Another day, she got a donut. Thankfully, she's young enough that she still feels she has to be obedient and when an adult tells her she has to get on the bus, she will.

 

At the same time, I was begging for antibiotics. We started with zith (from the LLMD who's trying to help us figure this out) and it helped for a few days. But then she developed a sinus infection and the pedi put her on omnicef. That was like a miracle. It all went away within a day. We're now 3 days post-omnicef and back on just 125 mg/day zith and things are starting to creep back in. Having so many snow days doesn't help, because it reinforces how nice it is to stay home with mom. But the fairies are coming back in other ways. School is just one trigger. It's really not about school. It's about anxiety and panic attacks over any change or challenge.

 

So we're headed back to the LLMD in a week, with my 6 weeks of charting, and if she continues to slide on just the zith, you know what I'll be lobbying for...(BTW - we do not know id DD is Pandas or Pitands or lyme - we can't find a trigger - we only have the drastic response to abx as a guide). but in the meantime, lots and lots of ERP and rewards. I may need to start giving motrin a half hour before the bus, or benadryl.

 

Sorry I don't have a magic recipe for you. You've been dealing with the same fairies we have for a lot longer. I guess just keep re-reading Brain Stuck and maybe "Talking Back to OCD" now that your girls are older. That book explains that it's the child's job to fight the OCD and the parent's job to be the coach. Now that your girls are older, maybe it's time to shift some more responsibility onto their shoulders when in the past, it was more mom's job to help them and in some ways, do the ERP for them.

 

I'll be thinking of you...

Edited February 5, 2011 by LLM

[MomWithOCDSon]

What worked for our DS, 12-13 at the time, in terms of getting him back into school was kind of a combination of many of the methods and ideas already mentioned here.

 

Firstly, we found and confirmed that we had a "working treatment plan;" in our case, that meant abx and ERP therapy. And we made it clear that, while we would start "slow and low" with his return to school, returning to school was non-negotiable. He needed to do it, he'd get every support we could gather, and people he could trust to help, but some of the determination and resilience would need to come from within himself, now that the abx was helping him to feel better.

 

Secondly, we got him an IEP so that he would have not only the accommodations to help him once he was back in the school buidling, but also so that he would have a case worker on site who's priority would be to help DS find success in school and stay there. This case worker became his "go-to guy," and we believe was almost single-handedly responsible for DS's increasing willingness to take one school again. We were lucky . . . this teacher/case worker is a remarkable man.

 

Thirdly, we were successful in starting with one period . . . his favorite, easiest class period to begin with . . . at a time. So DS went to school for only 50 minutes a day for almost 3 weeks, only adding the next 50-minute period when he had confidence that he could manage it without collapsing back into a state of hyperanxiety. When he'd add on an especially challenging class (math, science, etc.), sometimes we would let his schedule sit there for considerably longer . . . 5, 6 or even 8 weeks. Until the point that he was handling the classwork and homework successfully and happily. All in all, it took us about 4 months to get him back into school full-time, but he's stayed there ever since.

 

For DS, success and comfort at school with his friends and his teachers was really reward enough. There were days where he still dragged his heels going to school, or would have last-minute meltdowns over something, probably in an attempt to either delay or entirely forestall going at all. But we held firm, and he rose to the challenge, and was proud of himself every time for meeting it head-on. We wound up rewarding him ourselves with various gestures (his favorite meal for dinner, a new book he wanted, etc.), and we would've gone to a point system if he'd needed that extra "boost," but since he didn't, we just gifted him to say "Way to go!"

[dcmom]

Thanks for all of the replies.

We have tried to calm the situation, have a reward program set up, have given her some quick ways "out" at school via a pass to rme nurses office. We have a psychologist (new one since we moved this summer) appt on tuesday, and an llmd on Wed.

I would be so willing to make accomodations for her- but along with her OCD is a fear of embarrassment at doing anything out of the norm. Needless to say it is not necessarily rational.

How did your children explain the half days and missed days?

 

My dd started a new school since we relocated this year. She is in middle school. Fortunately Sept thru Most of Dec she was in good health with almost zero pandas issues. She is normally a social butterfly, and extremely outgoing.

[smartyjones]

ocdmom's post just made me think of something. . . we never did this b/c it didn't come up after the suggestion but. . . our psych suggested that he go to school for a short time at the end of the day and increase the time backwards. she thought it may work b/c he'd be leaving with everyone else (which was our goal b/c he was staying only half day, then a little more than 1/2-- this wasn't so much an issue b/c was in a montessori mixed age class that preschoolers stay 1/2 day and kindergarteners stay full -- he just never quite made it to full -- teacher wasn't supportive towards end of year so he stayed in limbo) and he'd know it was only a short time with a definite release time. he, like your girls, enjoyed school once he got there but we could never really reason that b/c the anxiety would take over. a definite time limit would have been helpful.

 

so -- maybe for you -- does she have classes or periods in middle school? so maybe the deal would be that day 1 she goes for last period, day 2 she goes for last + second to last , and so on.

 

i'm not sure what to do about explaining to peers why she's doing that b/c in middle school that is quite different than kindergarten. it wasn't so much of an issue for ds b/c although he didn't like doing things differently, he always saw the accomodation of the lesser of two evils and gladly took it over peer pressure.

 

maybe it could be some type of explanation that she's been sick and has to rest and can only do a little school -- if a child had mono, don't they usually go back to school in short increments? so could that work rather than more detailed?

[MomWithOCDSon]

How did your children explain the half days and missed days?

 

 

 

You know, very few kids asked him where he was or why he wasn't in school all day, and the ones who did ask were friends of his. He told them he was sick and doing some home-schooling until he was well enough to come back to school full time (which was true). He also told them (he was in 7th grade at the time) that his immune system was messed up, and that he was staying out of school some to reduce the likelihood that he would catch something.

 

It seems like his few friends who inquired sort of "spread the word" among the other classmates that were curious, and everyone took it in stride. I'm sure there were a few out there who made snide remarks or jokes at DS's expense, but if so, he never heard them and his friends didn't heed them either . . . they probably defended DS.

 

I do think, though, that boys are different from girls, especially at middle school age. From what I see of my son's friends and my friends' kids, the girls tend to be more concerned about what others think, and their social circle is sacrosanct to them; boys, from my experience, are a little less concerned in that regard and just look to their few good friends to understand and support.

 

Smarty, you hit the nail on the head in terms of our DS's return. He began 5th period, after lunch, and added on class by class from there, until he got through to the end of the school day, leaving school right along with everyone else. Then he started tacking on class periods in the other direction, until he finally got to first period and homeroom.

 

I will note, however, that one of the things we added to his IEP was that he was allowed to enter the school building earlier than the general masses once he was coming to school for the beginning of the day again. By letting him into the building a little early (originally through a side door that the other kids didn't use, and then eventually he just went right through the front doors), DS was able to sort of get organized and ready for the day, visit his locker before the hallways got chaotic, stop by and see a teacher if he had a question of him/her, or even spend a few minutes with his caseworker in private. Early arrival has become sort of a custom for him now, and he really likes getting a few minutes of undivided attention from one of his teachers.

[bubblegum]

DC mom is your inbox full?Could you pm me,thanks.

[princess1]

Hi My daughter is 9yrs old and has an extreme separation anxiety with her OCD Pandas. Just started new treatment colostrum today. Refusing to go to school is so hard on everyone. What I found works is reassuring my daughter that I will be at school in a minute if they call me. In the morning I go in with her and notify the teacher she has had alot of worries around coming and if she needs to come home she is to call me. Once they are there the distraction helps. The routine is hard to maintain but the teacher needs to be a safe reassurance for your kids.Knowing the teacher is there to help them helps the separation anxiety. My daughter needs to hear it directly from her teacher to feel better.Thats why I bring her in with me before school begins in the morning.I think the loneliness is so hard without understanding Mom.