going at his own pace VS giving him too much control

smartyjones · August 22, 2012

school is starting next week and with our history -- my anxiety is through the roof -- i'm downing the GABA -- seems to be helping.

ds has history of extreme school phobia. he's also quite clearly twice exceptional -- although never really had good working strategies. he's entering 3rd.

he is beginning at a new school -- a charter school with a bit of a 'different' philosophy. for those who know me, they mention Ross Greene (Explosive Child) in their discipline policy -- my head almost exploded (in a good way) when i read that. i had a very good meeting today and they seem on the ball. they are planning to basically begin again after disastrous last year with new evals - that were never properly done - and new plans.

ds met with school psych today and it went well. the plan is basically to ease him in at his pace -- he was on home teachng since last Nov. he'll be in school all day but maybe not in classroom. maybe in separate resource rooms or something(not self contained spec ed) . this school is seeming to much more take over than last year, who basically had me working as his aide so they didn't have to allot resources. i think i now see partly my error was being too knowledgable about his disorder where they knew nothing.

i am willing to let them do their work -- although it is hard b/c of past horror.

my question to all my wise friends, is how can i work in our sphere and how can i support the school in what they're doing in the fine line of allowing him to do what is comfortable so he can accomplish it, but not so comfortable that he is in too much control and ends up avoiding?

a litle bit of a separate question-- many of ds's problematic behaviors are "asperger-like". i don't think that is the correct diagnosis for him - PANDAS is. however, in the school world, Asperger carries alot more weight than pandas. what would be trouble if that allowed him services and understanding that PANDAS does not? b/c i know the correct diagnosis and am working with it medically, i don't so much worry about an erronous label -- should i be if they were to think it fit?

LaurenK · August 22, 2012

school is starting next week and with our history -- my anxiety is through the roof -- i'm downing the GABA -- seems to be helping.

ds has history of extreme school phobia. he's also quite clearly twice exceptional -- although never really had good working strategies. he's entering 3rd.

he is beginning at a new school -- a charter school with a bit of a 'different' philosophy. for those who know me, they mention Ross Greene (Explosive Child) in their discipline policy -- my head almost exploded (in a good way) when i read that. i had a very good meeting today and they seem on the ball. they are planning to basically begin again after disastrous last year with new evals - that were never properly done - and new plans.

ds met with school psych today and it went well. the plan is basically to ease him in at his pace -- he was on home teachng since last Nov. he'll be in school all day but maybe not in classroom. maybe in separate resource rooms or something(not self contained spec ed) . this school is seeming to much more take over than last year, who basically had me working as his aide so they didn't have to allot resources. i think i now see partly my error was being too knowledgable about his disorder where they knew nothing.

i am willing to let them do their work -- although it is hard b/c of past horror.

my question to all my wise friends, is how can i work in our sphere and how can i support the school in what they're doing in the fine line of allowing him to do what is comfortable so he can accomplish it, but not so comfortable that he is in too much control and ends up avoiding?

a litle bit of a separate question-- many of ds's problematic behaviors are "asperger-like". i don't think that is the correct diagnosis for him - PANDAS is. however, in the school world, Asperger carries alot more weight than pandas. what would be trouble if that allowed him services and understanding that PANDAS does not? b/c i know the correct diagnosis and am working with it medically, i don't so much worry about an erronous label -- should i be if they were to think it fit?

I don't think that you should be overly worried, but aspergers and PANDAS can co-exist. As a matter of fact, I think the two co existing is quite common. Does your son have an aspergers diagnosis?

LNN · August 22, 2012

my question to all my wise friends, is how can i work in our sphere and how can i support the school in what they're doing in the fine line of allowing him to do what is comfortable so he can accomplish it, but not so comfortable that he is in too much control and ends up avoiding?

a litle bit of a separate question-- many of ds's problematic behaviors are "asperger-like". i don't think that is the correct diagnosis for him - PANDAS is. however, in the school world, Asperger carries alot more weight than pandas. what would be trouble if that allowed him services and understanding that PANDAS does not? b/c i know the correct diagnosis and am working with it medically, i don't so much worry about an erronous label -- should i be if they were to think it fit?

This summer, DS and I read a book about a kid in the 50s who loses his hand in an accident and his dream of playing baseball is dashed. His mom takes the stance almost immediately of "deal with it, figure out how to tie your own shoes, figure out how to do your chores." He eventually does just that (and teaches himself to play baseball one handed). It hit me like a ton of bricks just how much I've come to coddle my son to compensate for the disabilities PANS brings. He's 9 and I was still cutting his meat as I dished out dinner. I suddenly realized how ridiculous this was. I was still helping him with a lot of things that require fine motor skills (because we all know that the tantrums that come with frustration are he** to deal with). So I stopped doing as much and he quietly rose to the challenge (in most cases).

It's so understandable how we become over-protective of our kids. We fight tooth and nail for treatment, for school accommodations, for every facet of family life. Over time, it becomes reflex and we forget that sometimes, in order for them to be normal, we need to let them risk failure and own their success - without us.

So this is my girlfriend nudge to let him go. It sounds like he's in a really supportive environment. I know you're terrified that if he stumbles, the whole school refusal nightmare will come crashing back. It's like being afraid to love again after the first time you have your heart broken. But you eventually have to learn to trust others (teachers) even tho the last relationship broke your trust.

The school has to be his territory, a place he feels safe without the idea that you're there. You need to send him the message that you know this school understands and will help him succeed, that you have confidence in his abilities. If you hover, you risk sending the message that you don't have confidence in him. Really, really hard?? Absolutely!! Important? I think so. (I think they sell Gaba in jumbo bottles).

Trust the school to push him at a pace they think is reasonable. Will there be bumps? Probably. But let them be bumps that get overcome without your immediate intervention, at least for awhile.

As for the asperger's - I think the only thing you want them to understand is that unlike asperger's, PANS is episodic. But if it helps frame the way your DS responds to the world, I can see some benefits. Maybe let them form their own opinions until Columbus Day. Then come back to this post and see how you feel.

MomWithOCDSon · August 22, 2012

my question to all my wise friends, is how can i work in our sphere and how can i support the school in what they're doing in the fine line of allowing him to do what is comfortable so he can accomplish it, but not so comfortable that he is in too much control and ends up avoiding?

Not sure I qualify, but the "wise" specifier aside . . .

We ran into a little similar trouble with our DS back in 7th grade, when his PANDAS and anxiety were at their greatest height. The school psychologist decided that what was in order was a handful of laminated "passes" that, if he was in class and began to feel overwhelmed, he could just whip one out, head for the door, and drop the pass on the teacher's desk on his way out. That way, his "freak out" wouldn't occur full-bore in front of his classmates or require the teacher's undivided attention at the expense of the rest of the class, and he could go somewhere where he could privately collect himself and then return to class.

The obvious problem, though, for those of us who really know what this sort of gianormous anxiety can do, was that he rarely was able to collect himself and go back to class, and his avoidance just drove a desire/need to engage in more and more avoidance, 'til it got to the point that he was avoiding everything.

In general, I think it's a rare teacher, administrator or school psychologist who really understands OCD or similar anxiety behaviors and feels comfortable, in the face of an obviously distressed child, standing their ground and insisting that Johnny CAN undertake this task or CAN do that math problem, rather than caving and unintentionally aiding and abetting the avoidance behaviors in an attempt to reduce or remove the stressor.

So, you will probably have to continue to advocate strongly, maybe even coach from time to time, your DS's teachers, and I'm guessing that you'll be front and center at home, coaching him through stuff after hours that the school staff let him "slide" on. It's a really gray area, but the teacher will get better at assessing your DS's "breaking point" -- that point at which encouragement and insistence that he proceed is no longer productive and, instead, becomes a losing proposition -- as she gets to know him better, and that will facilitate progress, as well. For what it's worth, our focus has nearly always been on coaching DS to be adequately productive that he demonstrate mastery of the concepts, but "busy work" type assignments (redundancy, "color this" and "what did you do this summer?" sorts of stuff) are always sacrificed to the work that both 1) requires more complex thinking because that's what he enjoys and what turns him on, and 2) tends to prove, therefore, that he can run rings around many of his classmates in terms of mastering the material, he's just not going to color 15 maps to prove it!

Ultimately, I would give the teacher and the staff some rope, make sure they know you're available at any time to support them and your DS's productive participation in their class, and sit back a bit. You'll be able to tell from the school's reporting, your DS's stories when he comes home each day, the number of phone calls and/or emails you receive (or don't) how things are going and if and when you might need to intervene a little more forcefully, or more likely add some "color" or perspective to various situations to help everyone out.

You guys will figure this out and do well . . . I just know it!

1tiredmama · August 23, 2012

Sounds like a fabulous school! I just might be jealous. I agree with the others in that, if you trust this school and your ds's teachers, then stay out of things and let them take care of your ds. Even if he reaches an extreme state of anxiety, you need to hand him off everyday.

When my dd12 was in second and third grades, she had exceptional teachers and aides. Most mornings, I carried dd to the car screaming, popped her, her shoes, and her backpack into the car, engaged the child-safety locks, and took her to school. I handed her off, grumpy at best, screaming at worst, to her teacher. It was awful, but dd was safe and in the hands of people who genuinely cared for her.

As far as being a supportive parent went during homework time, I tried. I offered support, but I didn't take any abuse. When dd crumpled her homework and threw it, I flattened it out later, and sent it in with a note on it saying, "It was a bad night." She completed it at school.

Because I know what avoidance does to someone with anxiety, I refused to allow dd to avoid (until I could no longer carry her.) She actually became confident midway through third grade, which coincided with a remission that lasted 2 years. Now, we are a year and a half into a relapse with avoidance/school refusal, and it just perpetuates itself--very frustrating! I find myself missing those days when I could carry her into the school. It was so much easier, and I could hold a job!

And with ds, now 17, I like you found that the more I did to educate my son, the less the school felt they needed to do. They also felt they had the right to blame me when I could not get him to school (fifth grade) or keep him up on his studies. Trust me, leave the "burden" of education to the school--it keeps them accountable. Supplement during the summer, if you like, and provide all the extra-curriculars you want, but for the next 9 months leave the academics largely to the school. You have a big enough job in just getting him there everyday.

Here's hoping you are a big, strong mama with a small son! Makes the job a lot easier!

dcmom · August 23, 2012

smarty-

You've gotten GREAT advice! And I agree with all of it.

My daughter entered third last year. It was the first year I did nothing special for her. She did not meet the teacher before school started. I did not give the teacher any heads up (on top of, or maybe because of pandas- she is very shy- borderline selective mutism- but getting better!) A few weeks into the year I set up a meeting with the teacher to explain our "challenges" and let her know I was on board for absolutely anything she needed.

She had a great teacher, and the year went unbelievably well- and she had NO special treatment.

I think that is your goal. I would err on the side of staying out of it completely- letting the school and your son deal with it- while making sure they both know you are there if there are any issues.

I keep reminding myself that I want her to be totally self sufficient as far as school goes by the time she gets to middle school.

If your son is aspberger's like- I don't see the harm in having this put in writing (I think you could get rid of it if no accomodations are needed- but maybe some wiser moms can comment on this part of your question). If this "term" gets your son what he needs, and helps the teachers to be more effective with him- then I think I would go for it- if this is what they suggest to you.

Good luck- and work on your own anxiety

911RN · August 25, 2012

We had the same issues....after 7 years, too many specialists to count, all whom had their own spin and different diagnosis. None, of which, any two docs could "agree on"....I gave up!! I changed my focus from "diagnosis" to drilling down into my child's learning needs/style and how best to help him. Accommodations and modalities to work with his strengths and not his disabilities and weaknesses. This has been our recipe for success and improvement. Is he NT and perfect, NO. Is he better than where we started- YES!! We deal with the hand we were dealt.

We continue to show an upward path of progress although not at the same rate as his NT peers. There was never any consensus. Too much waxing and waning with my child, too many outliers that didn't fit classic criteria for the diagnosis of this or that. Too many symptoms that came in and faded out, new ones arose, went away, others replaced. You know the drill. He looked like Autism, Asbergers, OCD, LKS, tic disorder, anxiety disorder, MR, speech apraxia, CAPD, sensory issues, Tourettes, PANDAS etc., etc.

It was full blown craziness...I told them there is no way a child can be ALL of these things.I refused that he be an alphabet soup of diagnosis that he only fit bits and pieces of each one.

I FINALLY defined my child---PPPFED---Purple Polka Dotted Flying Elephant Disease:)!! The IEP team just shakes their head and laughs when I tell them that that is his qualifying diagnosis for his IEP. I tell them I am as right as the rest of the "professional experts" that can't reach agreement either. With a folder that is 4 inches thick with psychoeducational and medical testing from various sources that all disagree---what can they say??

Between me, him and them (IEP team)---we came up with what works DESPITE what the experts said or didn't say. It has been trial and learn. Some bad medication decisions, some good. Reevaluate, change, fall back and punt Try a new strategy--it works--stick with it. Change doctors, more testing etc. I always relished testing---not for him---but for ME and IEP team to learn something new that may help him. See changes, progress etc. With a child that seemed to change everyday this was necessary. I learned to focus on the child's needs and not necessarily the diagnosis. Once, I reached this point, there was a certain amount of freedom and liberation from the medical world. It was up to "us" to come up with a formula that worked. And, yes- I fought many doctors along the way to get what I researched that I wanted to try. I had to research, learn, have reasoned arguments. Be more knowledgeable than the docs. Beat them at their own game! Had one Neurologist actually throw a Rx at me and run from the room because he had no counter points for my arguments. I am a nurse which helped, although, I have the greatest respect for non medical parents, on this forum and others, that don't have the medical back ground that fight similar fights being "self taught". I can only imagine that learning curve!!

Seriously, he has an OHI qualifying diagnosis for his IEP which nobody will disagree with once they know the child. "Inconsistency is the hallmark of neurological disease." WHAT neurological disease could still be debated. My child has been nothing if not inconsistent. One day he can be a rocket scientist, the next day drooling in soup.

I fought to prove LKS since that most fit the history and testing, which is his underlying OHI diagnosis BUT he still had docs that disagree. I don't care.

I fought Autism since he was ADOS negative and had a leg to stand on with that! Mainly, due to no insurance reimbursement for that particular diagnosis (I AM a realist, after all!!)

Bottom line, you sound like you are doing all the right things. I would worry less about the Aspberger's label and more about how that qualifies him for needed services. Focus his education and teaching style to his strengths--not his disabilities. His accommodations to his weaknesses. I am from the Church of What Works! After 7 years- that's my motto.

My son is entering Middle school- big transition year-UUGGHH! I have spent hours in IEP meeting over the last couple weeks. We will see what happens with current plan and reevaluate in 4-6 weeks. If it is not working we will reevaluate and change plan. THEY know that and I am brutally honest with any reservations and concerns with the middle school plan. Wish us luck!

911RN · August 25, 2012