Taking our kids out of school

[cfamily]

Hi Group,

 

Our dd10 is about 8 weeks into this latest episode we are testing for any underlying infections before we move to the ivig. We are having a ___ of a time with the school situation. Her OCD/anxiety is all wrapped up with getting sick at school, obsessions with kids at school that she knows have gotten sick. She can go from 0-10 at school in about a second. They have implemented a 504 plan where my husband goes in to school in the afternoon and they stay or not as long as she can handle it. Sometimes she can't even go in the classroom and she sits in a conference room with my husband. Are we torturing her?

 

Should we just throw in the towel and let a teacher come to the house? The psychologist and the psychiatrist have made us feel bad in that we are giving into the OCD and making the problem potentially worse. The school can't handle her when she is having a full blown episode. We are so depressed and confused.

 

What thoughts or experience do you guys have about pulling our children out of school?

 

Thanks for your input.

[formedbrds]

W

Edited February 7, 2011 by formedbrds

[browneyesmom]

Sorry, I disagree with the psychologist & psychiatrist. Ours says exactly the opposite - that DD11 can not handle school right now and to leave it on the back burner until she is better. She has been on Home-bound for about a month now and honestly, has gotten little work done during that time. I no longer stress about it... I encourage her to work when she can, but only for about 15 min at a time and then she takes a break. She also naps when she is tired and I will not stop her - she needs that rest to heal and recover. First quarter in this new middle school, I pressed and pressed with lots of communication with her teachers (who were very supportive, communicative and helpful), trying to help her stay on track in school and up to date. She got sicker and sicker... also could not clear strep infection for months. This is something else that having them home helps to avoid - the plethora of germs that float around the schools this time of year. No biggie for most kids, but a nightmare for our PANDAS kids.

 

Although she is in a wonderful school this year and I really want her back in there as soon as she is *able* (meaning, ready health-wise) because I truly believe it's a good situation for her... honestly, I do not regret pulling her out and I *KNOW* she would be a lot worse right now if I had left her in there.... not due to the school - unlike the first couple of years, they are fabulous this year - she's just too sick to handle it right now.

 

I believe that you know in your heart what your child can and can not handle. Go with your instinct. If now is the time to pull out of school to homebound for a while, you will know and when it is time to go back, you will know that too. Do not let anyone make you feel bad for doing what you know to be best for your child. It is not giving up... it is appropriately addressing your child's needs - this medical condition is no one's fault, so don't even think about accepting any blame in your family for it. It's hard enough as it is.

 

I wish you the best with this and please let us know if you need support in dealing with the schools - some are great and others can add to the all our war we live in daily because they have no idea. That will change in time... in the meantime, do what you believe is best. Take care.

[smartyjones]

There is a downside; it is extremely difficult to be with a pandas child 24/7. If you think you can handle that or have someone to give you long breaks, then, I say do it. Taking your child out of school would not be throwing in the towel. It would be taking charge and doing what is right for your child.

 

 

i agree with all this from formedbrds. for us, we're homeschooling b/c we are trying to sell our house and they weren't going back to the same private school (for pandas reasons) but so we were trying to avoid too many transitions - so, many issues involved to make it not such the best situation. we really thought it would be just a few month solution but has become longer.

 

i don't think i've seen so many discussions about school lately -- have you tried doing a search with the word 'school'? it may bring you to some past discussions that may help.

 

we've had severe school phobia and then trouble at school with refusal to do things. he was in a private school that didn't reallly have the resources and basically teacher ran out of patience. i think in many situations, it is better to not have that added pressure for the child and the parent. however, it is a slippery slope that you've got to be sure that you are not starting other habits/patterns that are also troublesome and that you are in charge and making good decisions rather than being backed into corners.

 

in the end, i say trust your gut to do what's right. really, school is supposed to be an enriching situation of helping the child to grow. if that's not happening, it may be best to not be there at this time. i think you'll know when it's right and when it's not. just be sure, you are in control of making the decisions rather than having her and you cowtowing to the OCD - it's easy to let it be in charge.

[SarahJane]

I homeschool my ds(6 almost 7). We decided to do this when we were waitlisted at a Montessori school because there was NO way we were going back to public after his kindergarten year. Undx'd PANDAS hit during the 2nd semester & my son who had not caused any issues during the first semester got in trouble nearly every day from Feb until school let out in June. It was just awful. We didn't know it was PANDAS then (got dx after 2nd exacerbation in the fall & did IVIG), but I feel that even if I went back there and got a nice, neat 504 that he would still be considered a behavior issue even tho' it's a physical issue. And I highly suspect that there was a strep carrier in his classroom. I wish that I hadn't made my son suffer last year, but I didn't know what was happening. Hindsight is 20/20. And to me, it seemed like the school was supportive only for a little while...they knew this wasn't how he usually behaved since he'd done well for 6 months. BUT when they reached their limit (which let's face it, isn't hard to do with a PANDAS kid), they were done with it. I even sat in a meeting with the teacher using those words ("I'm done dealing with him."), and it was early May. I just didn't feel like I could yank him out, but it's amazing to me that we took so much abuse from them. So, while the school may be supportive now, you may consider if they'll reach their limit. (I'm not sure how home tutoring affects their funding...right now they're getting money for the days they can mark her present. And if you withdraw her totally to homeschool, that will cut off the funding.) If you do go the IVIG route, you'll worry about exposure even more.

 

Ultimately, it's your decision. If you feel that your child should be at home then keep her at home. As far as the OCD goes, it's not OCD in the classic sense (if there even is such a thing). It's due to brain inflammation. It's not giving into it any more than you would give insulin to a diabetic, IMHO. If she were thirsty, would you give her water? So...letting her brain rest and not be troubled by school at this point could be helpful to her & your family (and exposure to germs there can't be helping the situation). Is it the school psychologist giving you grief or a private one? And surely it's a private psychiatrist, right? School's don't have them on staff yet...do they? YIKES!

 

And with all that said, we are still on the list for Montessori next year. If we get in, we may try it, but if it doesn't work for us, I will have no problem homeschooling again. To be honest, the element of exposure even in that smaller setting freaks me out. Good luck in making your decision and weathering this exacerbation.

[texascatholic]

We homeschool and it works out best for us. I can't imagine sending my DD9 with PANDAS to school. However, we have always homeschooled from the beginning, so it seems normal to our children. She may like it and do well. At least you can tailor the educational program to meet her needs.

 

PM me if you want more info.

 

God bless,

Holly

[LNN]

I admire those who can successfully home school. The time and commitment and ability to switch hats and do lesson plans and keep up with the grade-level expectations...wow.

 

Personally, my son and I have a different dynamic. We often work well at homework time (tho we did not when he was really sick). But for him, the social skills he practices at school, the abilities of his teachers, the resources he gets from having different teachers work with him on different needs - it's not something I could manage myself, and I'd so beat myself up if he didn't stay on track and I felt it were my fault. So my hats off to all who manage it!

 

My daughter (with something brewing but we don't know what), used to love school. But since New year's, she's been crying and having anxiety attacks about 30 min. before it's time to catch the bus. She says the OCD fairies make her doubt that she'll have fun and she'd rather stay home with me. But once she gets there, she does have fun and is always so proud of herself for conquering her daily fears. So for us, being able to get her on the school bus is our daily ERP challenge and letting her stay home isn't a practical solution, because it would send the message that her fears were somehow valid/real. And she would feel defeated. That she wasn't strong enough to beat the worry fairy. And my fear is that would spread and make it harder for her to keep fighting her other fears. But then, she isn't in a place where her OCD is debilitating. So I'm not saying this is the answer in every case.

 

I think your answer depends on how your daughter views school when she's healthy, how often she gets to a 10 each day, how overwhelming it is and for how long and how flexible the rest of your family situation is. If you think homeschooling would benefit, if you can manage it, if you feel she's getting nothing out of the day while she's in the building, then it may make sense. But if there are portions of the day that she can manage, if she once enjoyed school and has a support network there, then maybe she can attend for certain parts of the day. Maybe the answer isn't an all or nothing approach.

[MomWithOCDSon]

I think our experience has been like many here, and I agree with everyone here about trusting your gut, with the added caveat, sort of highlighted by LLM, that if you make the decision to withdraw your child from school for a period of time, you do it because it is what is best for her and your family, knowing all the while that what is best may not be what is smoothest.

 

When anxiety and/or OCD are in the mix, it can muddy the waters because you can wind up inadvertently feeding your child's fears; the school is probably concerned that she will become school-phobic, if she isn't already. On the flip side, if your child is more dysfunctional than functional in the school setting at present, it might be more beneficial to consider either a) making additional changes to the school set-up, home-school her until she's physically, mentally and emotionally healthier and better able to manage her anxiety in the school setting, and/or c) home-school her until the school implements the necessary changes for better addressing her needs at school.

 

Here's what we wound up doing. We pulled our DS out of 7th grade for about 6 weeks. Frankly, in our case, we pulled him out less because we felt he couldn't handle it if properly managed by the school and the staff, and more because it was obvious that the correct pieces were not in place at the school early in the school year, when his exacerbation first really set in. Like your DD, he was too anxious to stay in class much of the time; if he missed a single word of instruction, or was a bit late getting to class because he had to stop in the washroom or dithered at his locker too long worrying about whether or not he had all the supplies he needed for his next class, he'd wig out and be completely overwhelmed. The school wanted him to stay in school so as to avoid giving him the message that the adults felt him incapable of coming to school, but they didn't have the right systems of safety nets provided for him at that point.

 

So, we brought him home and home-schooled him, put him on antibiotics, entered into a more intensive ERP therapy program, and started meeting with the school to set up a functional return plan for him. We got feedback and ideas for managing the anxiety in the school setting via the ERP therapist, and we spent a lot of time with the staff and teachers discerning what accommodations were truly "doable" as opposed to desirable in that setting. By the end of the 6 weeks, DS was feeling better (thanks to abx and ERP), and we began getting him back in school, one class period at a time. We started with his favorite class, right after lunch, and every couple of weeks, we would add another class to his schedule. So first we got him through the second half of the school day, and then we started adding classes in the other direction, on the other side of his lunch period, until, after about 2 months, he'd worked up to being back in school the whole day again.

 

It wasn't always smooth, and some days were still very stressful for all concerned. But, for us, it was the best choice. The social activity and maturation afforded him in the school setting far outstripped what we could provide for him at home and, to be perfectly honest, he's academically advanced to the point where we were going to have trouble adequately challenging him. Once back in school, he had not just his family and a couple of good friends to support him, but added a chatty lunch period, a social worker, a case worker, and a handful of very helpful and supportive teachers to his team.

[eljomom]

We too homeschool. It didn't start out for pandas reasons. This is our second year, and now that we are in it, I wonder how dd7 would manage in school, with the separation anxiety, etc. My dd8 always had issues with sep. anxiety, often got calls from school with tummy or headaches, etc., but we pushed through. My dd7 has not been sick near as much as she was when my other 3 were in public school and she was in preschool. I am thankful she is not at school to be teased for her tics, or "strange" thinking, etc.

 

As for social interactions, I will say that where we live, there are TONS of opportunities for social outings, intereaction with other adults as "tutors" in co-ops, etc. So dd7 gets to do all that, and I am nearby. And in addition, and this is NOT the rule, but I find it to be more of the norm---most homeschool families are good-hearted, compassionate people, who will love your child for who he/she is, and so will their kids. Don't get me wrong---kids are kids, and may say "why do you keep sticking your tongue out"--but with a caring parent nearby, it can be diffused and used as a learning opportunity.

 

I will say too, that there are days I secretly wish she (all 4 of them, actually) were in school---it does get stressfull staring pandas in the face all day every day...especially the tics and the germ and clothing issues......sigh.

 

I think my biggest struggle right now is finding curriculum that dd7 doesn't despise, and doesn't stress her out, while not leaving her to do absolutely nothing at the same time.

[dcmom]

Cfamily

 

this is so hard, I wanted to give you our perspective- which is similar to most above.

 

I have two pandas daughters who LOVE and thrive in public school. Pandas hit our family two years ago, and we came face to face with this decision twice- at different times, during crisis points for each dd. We made two different decisions- and in hindsight feel we did the best thing both times.

 

My younger dd had an overnight acute onset in kindergarten. School was tough; OCD, sep anxiety, etc. We pushed school (lots of arriving late, half days, checking in at lunch, and even allowing pjs to be worn). We were kind and patient, yet pretty firm. We felt good about this because she loved school, had a loving teacher and loving group of friends, and came home much happier for having come.

 

My older dd was 9 when she had an overnight acute relapse. Major OCD: germ, fear of being embarrassed, tons of symptoms. We tried school- but after observing her there (my former outgoing, bubbly class president now sat in the back, expressionless, staring out the window- a shadow of her former self) we pulled her out. We have always framedvpandas as a medical illness, ( although we do discuss like many patients need physical therapy, pandas kids need therapy to become strong and fully healthy). After medical treatment she was begging to go back to school.

 

Both of my kids love, and thrive at school. I am not interested in homeschooling (as long as their health holds out). So we have, for now, a committment to working with the school (we have had nothing but understanding from the schools). However, my girls tend to have overnight debilitating episodes that come with lots of panic. ERP is done gradually, small steps- it is not always possible to do that and attend acho. So- of need be- we pull them out- with the clear expectation that they will be returning. We keep up with schoolwork and friends, start working on ERP, and seek medical intervention.

 

So- my advice is to go with your gut. My goal for the worst days is to bring as much joy to their life as possible- if that is in school , push her- if school is making her feel horrible- consider temporary homebound- or maybe the best is a combination- half day?

 

Good luck- and bless your dear husband for sitting outside the classroom (that is normally my job).

[advocatemom]

I agree with so much of what has been said in this discussion. My dd11 is currently attending school on an "as able" basis. She has missed a total of 42 days so far since the end of October. We had homebound instruction at the end of November and we are re-assessing this week. We are blessed with a fantastic public school with a phenomenal staff of teachers/psychologist/guidance counselor/social worker/nurse who have gone over and above expectations to support our daughter. They are interested in learning about PANDAS and they accommodate her every need. However, our daughter is just finishing up steroid burst and is on augmentin and she has just completed 3 FULL days of school this week. We are also blessed in that she is so academically capable that she's able to catch up quickly. After missing 42 days, she's still pulling all A's.

 

She loves school and has always excelled in her studies. It is SO very frustrating to get up in the morning and watch her have such a bad panic attack (terrorized) from the thought of going to school. It's been a day-by-day thing for us for 3 months. Thankfully, I'm an at-home mom so I have been able to be here and help her keep up with studies. However, sitting home for 3 months is the reason I've gained 15 lbs!!

 

My feeling is don't push too hard -- its not worth the added anxiety for the child until they are in a higher stage of recovery and can handle it.

Its not worth your frustration/anger and its not worth the child having to feel like a "failure" so early in the morning. I'm not suggesting that any of you make your children feel like failures -- its just been my own personal experience.

 

If you are able and the school is supportive and work with you -- just hang at home and keep your child as low-key as possible. Maintaining family sanity is priority #1!!!! (coming from someone who doesn't always do such a great job of it --wink)

[cfamily]

Thank you everyone! I will try to go with our gut feeling and think about the time she needs to heal.

 

Sharon

[Stephanie2]

Like everyone else is saying here, it so depends on the situation you and your child are in. I tried pulling both of my boys out last year for 2 months to see if the decreased exposure would prevent another relapse. Wouldn't you know it, 4 weeks into being home they both got strep (and I was a nazi mommy following them around with antibacterial gel whenever we would leave the house, which was not often). Not to mention, when the DID get strep and fell apart, there was no break for mommy!!! But that was just my experience and my bad luck I suppose. I also have the issue of both of my boys have multiple chronic conditions that requires all of my time to manage (docs, meds, supps, pharmacies, research all day long) and I would never be able to manage it all without the time away from the boys.

 

Like I said, depends on the situation. You also mentioned that your husband is a stay-at-home-dad. It will only work so long as your husband has not lost his mind! When/if that happens it will be "back to school"! Hopefully he is stronger than dh and I!

 

With all that said, I think every family should try it when nothing else has worked. You never know until you try.