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School/Tudor Refusal

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Yes, school phobia is fairly common among our kids when they're not well. Trouble is, the anxiety about school can/will build upon itself and generally get worse, not better, if you don't tackle it. It is anxiety/OCD based, and you'll need some help to get your DS back to school.


If he's getting home-based instruction, I take it you have either a 504 Plan or an IEP? Then you need to ask for a meeting to discuss and make a plan for getting him back into school.


But mostly, and probably firstly, your DS needs some good therapy; not going isn't an option. If it comes down to it, you can probably find an ERP therapist who will make a housecall, if necessary; many of them do because they're accustomed to dealing with anxieties that can be home-based. The therapist can help your DS face and deal with his school anxieties, and he/she can help you in working with the school to formulate a plan for returning to school.


Sorry . . . I don't mean to sound harsh. It's just that when it comes to anxieties like these, we parents really have to work against some of our base instincts, to set our protectiveness and empathy aside a bit. OCD/anxiety tends to grow and creep into more and more corners of a person's life the more you accommodate it, so allowing your son to avoid the tutor or school entirely is supporting his anxiety more than it is supporting him. Sure, it may seem easier and kinder now to pull him out of school, but what happens next? Now he's afraid to meet with the tutor. And what's next? Unabated, that anxiety/fear may continue to grow until he's avoiding anything that triggers an "I don't know" feeling. Fighting OCD/anxiety is sometimes about "being cruel to be kind," and it requires exposing a person to the situations/things that trigger the anxiety, helping them habituate to it, and ultimately learn to cope with it and lessen the anxiety overall. It works, but it's not easy. And many of our kids fight us much of the way along the road.


When PANDAS took my DS over, also at age 12, we, too, pulled him out of school for a bit and put him on home instruction. But he'd been diagnosed with "regular OCD" a full 6 years previous, so we'd already been schooled in OCD and ERP (exposure-response-prevention), and though we accommodated him more than ever before because he was so sick and so dysfunctional, we never let him step entirely away from the game. Every day, he had to face a little school work, and every day that the tutor came, he had to show up, and show up with a good attitude.


When he began to improve (after about 4 weeks of abx), we met with the school and made a plan to get him back into the building. We arranged to bring him to school and he was allowed in the building 15 minutes before the first bell so that he would have the opportunity to go to his locker, get situated for the day, before the halls were crazy, loud and packed. He started going to just one class each day for about 2 weeks, and then we added a second class. After another 2-3 weeks, once he'd demonstrated that he could handle those two classes, we added another, and then another and then another. We put an IEP in place, so he had a caseworker on site who was there to help him manage his day and address the triggers that may arise. And we had a good ERP therapist outside the school that he saw sometimes 3 times each week, if necessary. It was a long process, and took us about 3 months to get him back into school for a full day. But once he was back in, he was able to stay in.


Sorry to go on so long . . . it's a long, winding road, this whole PANDAS/PANS thing . . . . <_<

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At least once a month last year we had to physically put our screaming first grader in the car to drive him to school and at least once a week we played the "convince him to walk out the door to school on his own two feet" game. It's been better with penicillin last spring and Augmentin this fall. And sometimes he doesn't want to go to a movie, the beach, a restaurant, etc. either. I feel like the meanest mommy, but once we get him there he's just fine, so I do it. Hang in there!

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I know your frustration and helplessness all too well. My dd 12 is just where your son is. Last year, she often hid behind her bed, face to the floor, in fear of her homebound teacher. She feared anyone who was in any way remotely connected to school, that included her counselor. Both the therapist and dd's psychiatrist told me that counseling would be pointless, if not detrimental to dd while she was in that state. Even so, I tried my own ERP with dd, taking her to the school each day if only to sit in the car out front. We made zero progress.


Legally, your child must attend school or be declared a homeschooler, which is different from homebound. Knowing dd's situation, our school system sent us a teacher who is also an LCSW, who counsels children. She was great with dd. If dd could not walk or crawl out of her room, then school was held in her room, right on her bed! She tolerated that because she felt safe on her bed.


She was dx'd this summer by Dr. L. and started on two abx. Slight improvement this year in that I could get her to school for two hours per day, but only in the special ed room. Exposure was not working this year either. And, you can't physically drag a 12 year old to school. I got a job, so there is no more opportunity to do exposure anyway. So, back to homeound. Dd has reluctantly agreed to see her therapist this year, and she feels that when her teacher begins next week, she won't need to hide even though she is afraid.


I think the abx are helping a bit, but she still has so much farther to go. The key is to treat the PANDAS, then you are free to tackle the remaining issues because the child is then "available" to learn.


Also, her therapist told me and the school that her fear of making a mistake/getting something wrong/not knowing the answer is performance anxiety, but also social anxiety in that she fears what her teachers may think of her. We do not see her anxiety as an OCD. Her dx is panic disorder.


We are hoping to get PEX for dd because, at this point, we've exhausted all other avenues available to us.


I wish you the best. You have my sympathy. It's a tough spot to be in. If you do find a good solution, I'd like to know what worked because I feel like I just keep coming up empty-handed.

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Thank you for your support and for sharing your stories. I wish I could just throw my DS in the car and say, "Too bad, you are going!", which is what I used to do when he wouldn't go to an appointment, etc... Now that he is 12 and almost as big as me, it doesn't work. :)


I also tried my own ERP over the summer and we thought we were getting somewhere. WRONG! I tried to get the school involved. So, here we are.


We are going to make a plan for "reentry" to school when he is ready. I don't know... seems like we are far, far away from that.


I will look into getting someone to come to our house (so far no luck). He has been on antibiotics in the past which worked to a certain extent. I was thinking of calling Dr. T.


1tiredmam -- The doctor is also a child advocate and he sent a letter to the school informing them of the situation and says we are legally covered/protected but I will confirm. I agree w you -- The key is to treat the PANDAS, then you are free to tackle the remaining issues because the child is then "available" to learn


Thanks again... I am so glad I found this forum.

Edited by Ngold24
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A TS doctor that I am working with told me that we should be taking all school related stress away so that he feels in control and that he can make choices for himself. This is why we aren't demanding that he come and talk to the teacher, do your school work, etc... I believe this is supposed to help him with the tics and the anxiety up to a point where he can be calm enough to work with the teachers and then we are going to make a plan for "reentry" to school. I don't know... seems like we are far, far away from that. He says forcing him will make it worse.



i agree with helping him feel calm and in control. . . i fear allowing the anxiety to take control and holy moly, anxiety is a 'give an inch, take 10,000 miles' disorder! we have experienced much school phobia and refusal. he was homebound for 7 months last year. this year, pound on wood, is doing well.


can you set up a situation that he is able to choose particulars - like where and when - he will do the school work, but not the actual if? my ds's anxiety is strong fight or flight and very much looks like absolute defiance. i try to remember and try to beat it into other's heads, it must be us AND him AGAINST the anxiety, not us against him. . . but we do need to fight the anxiety and not let it take over.


i tried to send you a PM but wasn't able. let me know if you want me to.

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