Do I need to get a 504 plan or IEP? DS starting high school this fall

[SEAMom]

My DS15 starts his freshman year of high school in September. His PANS started the beginning of March and we were lucky enough to figure it out and get him treated with abx by the end of April. He is still on Augmentin. He has made a ton of progress this past month. His symptoms have decreased about 90%. Since he missed three months of school we decided to try and get him back in a learning/school environment. We enrolled him in a video game development camp. This is something that HE wanted to do. It was his decision to go. After two days of camp he was unable to go back. His symptoms came back full force. Luckily it took only about 48 hours to recover back to where he was before the camp. Clearly even though his symptoms had decreased a great deal his BRAIN has not healed or recovered fully. Do we know how long this process could take???

 

Is it a good idea or bad idea to slowly introduce academic work now? He has math he needs to make up that he missed this spring or he will have to repeat Algebra 1. Can I slowly give him some of it over the summer? Or is it a bad idea while his brain is still healing?

 

Do I need to get a 504 plan? or an IEP? What do I ask for? What would my child need? Parents of PANS/PANDAS kids who are in high school, what was there experience like? I really am terrified and want to plan ahead as much as I can.

Would love to hear your advice, experiences!

Thanks

 

SEAMOM

[BeeRae22]

My dd is much younger than your son, but as far as school goes if his disorder is affecting him academically than I would push for an IEP. If school were in session than a 504 would get him accommodations faster, but you have time to have an IEP in place before the new school year begins. This should include any work that would need to be done over the summer so he doesn't fall behind. Research IEP's and 504's online, there is probably a child advocate in your area too if you need help- learn your rights and then tell the school what he needs. You will need to have all of your information together- have your son's doctor write up a diagnosis and statement that he's being treated in his office, etc.

 

As far as having him do math at home, I would keep it light, not push, but give it a try- with zero pressure. He's old enough- let him have most of the control over how to approach it. Try to talk to him about it when he's having a good moment- see what he has to say. Don't threaten having to repeat the class- that would probably just cause more anxiety. Just tell him that since he missed some school that you need to see if he can make up some of the work, but if he can't than he can get to it later on after school starts.....

 

I had a lot of homework issues with my dd when she was in exacerbation... I learned that calm and relaxed is the best way to go- if he can't do it than there's no point in pushing- he'll get there eventually.

 

Best wishes

[MomWithOCDSon]

Beerea22 has some great ideas.

 

I agree that an IEP would be a very good idea, especially as it has become my impression (in our district, at least), that the older the student becomes, the harder it can be to get one in place; there seems to be some outsized concern that parents want IEP for their kids only in order to boost college test (SAT and ACT) scores by giving them advantages such as extended time, alternate testing environments, etc.

 

I might be misinterpreting what you've told us thus far, but your DS's actions sound to me very like my DS's "avoidance response" when he was still recovering, and frankly still something of a "go-to" when he gets over-stressed. New environments, new people, new expectations, etc. can put a strain on many people -- you don't have to have PANDAS/PANS to feel it. But yes, I think that in our kids, their brains are still healing, as well as maturing, so running in the opposite direction from what's causing the stress seems like the natural, even "right" thing to do.

 

I, too, would encourage some Algebra over the summer, in small bites and more as a device for rebuilding his "math confidence" than necessarily trying to make up all the missed work; that might be too stressful a goal. But if he's avoiding that because it's still harder and more frustrating for him than it was pre-PANDAS (my DS certainly found that to be the case initially), then he's going to need some strong support to get back in the game. You might try actually sitting next to him while he works a few problems and ask him if he can work them out loud, verbally, as well as on paper. Let him explain the steps to you and what he's doing, and if he gets stuck or agitated, you can try some encouragement, such as reminding him that he knows what comes next. In my DS's case, it took several weeks of that sort of coaching before he had his confidence back that he could, in fact, do math again successfully and so he stopped working so hard at avoiding it. Overall, I think getting your DS's "head back in the game" to some extent with academics -- math or reading or anything along those lines -- will help prepare him for the start of high school and hopefully reduce any avoidance impulses he might have.

 

What to actually request in the meat of your IEP is a whole 'nother ballgame; there's another forum here for academics/school issues, so you might search there for "IEP" and see what others have found useful and attainable. Any IEP for your DS should be as specific as possible to his specific needs, and, to some degree, you may not know entirely what those needs are until he's actually back in school. You can request a meeting to modify it at any time, of course, but it's still something of a process and typically doesn't get put into effect immediately. I would consider things such as: extended time for assignments and assessments; an alternate testing site (quieter, less distracting) for assessments; a "resource" period during his school day so that he can relax and regroup, maybe catch up on some work if he's up to it; since it sounds as though he's into computers, if being allowed to type/keyboard assignments (especially English or humanities essays) would be less stressful/difficult for him than hand-writing them, I would request that. Maybe he would appreciate having a locker on the end of the row, rather than in the middle, so that he's less jammed up with other students when he needs to use the locker, and maybe it would be helpful if he were allowed an extra minute or two during passing periods (between classes) to get his things or organize his thoughts, so you could ask that he be excused from being marked tardy in those instances. My DS appreciated being allowed to be excused from "all-school assemblies" and pep rallies in the gym because the noise and chaos was just too much for him at times.

 

One KEY accommodation we requested and were provided was the following: "reduce assignments for quantity, not quality" meaning, if he had a math assignment and there were 30 problems that were intended to reinforce and demonstrate a single concept, so long as he could demonstrate mastery of the concept doing, say, only 15 out of the 30 problems, that was okay, and he still received full credit. This was the genius suggestion of one of his gifted education junior high teachers and it proved to be worth its weight in gold during high school. Even in advanced classes, some teachers really believe in "drilling" concepts and/or lots and lots of written work (worksheets, definitions, etc.), what my DS would consider "busy-work," which he abhors. Work for work's sake, without the benefit of learning something new, is anathema to him. So this accommodation worked beautifully for taking some of the stress and strain out of the equation.

 

Hope that helps. Overall, I would just do what I could to help him get his head back in the game slowly, with as little pressure as possible, while still encouraging him that he's got what it takes, that he can do it, that it will get easier the less he works at avoiding it and the more he works at remembering that "He's GOT this!"

 

Good luck!

[SEAMom]

Thank you for the great feedback. We have a doctor appointment next week so I will get a letter so we can ask for an IEP right away. Great suggestions of what to ask for. There are things I would have never thought of like the locker and the no assemblies. The quality vs quantity is good too. This forum is so helpful. It is such a long hard road trying to navigate this. So nice to have some help!

Thanks!

[rowingmom]

Good. I would get the IEP underway. DD13 has had one since her various diagnoses (which were actually PANS related, but the ped psych and school didn't know that), but for the past 2 years the school hasn't had to use it and she has been unaccommodated. We kept it in place though, in case of relapse.

 

Her accommodations were for quantity, not quality as well, with additional time allowed for assignments and testing. If the teacher was confident that she understood the concepts that was sufficient. She wore ear plugs and was seated behind a screen for class work/testing to help with noise/visual distractions.

 

For math, I found it helpful to get the next day's work from the teacher and go over it with DD the night before, sitting beside her, helping and refocusing her attention. By doing this, even if she was distracted from listening during the lesson, she would still understand the concepts and be able to complete some of the classroom work the next day. This did wonders for her ego; that she was able to answer the questions along with the other children. DD has never been incapable of doing the work, she was just incapable of concentration while her brain was inflammed.

 

I'm not sure if the IEP will travel with her to high school this fall. She hasn't relapsed since treating for babesia and her bartonella remains under control.

 

Every summer we work with the grade-appropriate MathSmart workbooks, a couple of pages a day just to keep current and not lose everything from the previous school year. They are pretty fun; not heavy duty like the workbooks used in class.

Edited July 1, 2015 by rowingmom

[HopeinHIM]

My DS15 starts his freshman year of high school in September. His PANS started the beginning of March and we were lucky enough to figure it out and get him treated with abx by the end of April. He is still on Augmentin. He has made a ton of progress this past month. His symptoms have decreased about 90%. Since he missed three months of school we decided to try and get him back in a learning/school environment. We enrolled him in a video game development camp. This is something that HE wanted to do. It was his decision to go. After two days of camp he was unable to go back. His symptoms came back full force. Luckily it took only about 48 hours to recover back to where he was before the camp. Clearly even though his symptoms had decreased a great deal his BRAIN has not healed or recovered fully. Do we know how long this process could take???

 

Is it a good idea or bad idea to slowly introduce academic work now? He has math he needs to make up that he missed this spring or he will have to repeat Algebra 1. Can I slowly give him some of it over the summer? Or is it a bad idea while his brain is still healing?

 

Do I need to get a 504 plan? or an IEP? What do I ask for? What would my child need? Parents of PANS/PANDAS kids who are in high school, what was there experience like? I really am terrified and want to plan ahead as much as I can.

Would love to hear your advice, experiences!

Thanks

 

SEAMOM

My DS15 starts his freshman year of high school in September. His PANS started the beginning of March and we were lucky enough to figure it out and get him treated with abx by the end of April. He is still on Augmentin. He has made a ton of progress this past month. His symptoms have decreased about 90%. Since he missed three months of school we decided to try and get him back in a learning/school environment. We enrolled him in a video game development camp. This is something that HE wanted to do. It was his decision to go. After two days of camp he was unable to go back. His symptoms came back full force. Luckily it took only about 48 hours to recover back to where he was before the camp. Clearly even though his symptoms had decreased a great deal his BRAIN has not healed or recovered fully. Do we know how long this process could take???

 

Is it a good idea or bad idea to slowly introduce academic work now? He has math he needs to make up that he missed this spring or he will have to repeat Algebra 1. Can I slowly give him some of it over the summer? Or is it a bad idea while his brain is still healing?

 

Do I need to get a 504 plan? or an IEP? What do I ask for? What would my child need? Parents of PANS/PANDAS kids who are in high school, what was there experience like? I really am terrified and want to plan ahead as much as I can.

Would love to hear your advice, experiences!

Thanks

 

SEAMOM

I too like to plan ahead. LOL There in lies the problem. Our DS has missed 18 months of school. Every attempt at reintroduction was a failure. Best advise was from a therapist in NYC. Take all your past expectations a throw them out the window. They can and most likely will cause problem for your child. The brain takes a long time to heal for some. Others no. Our child now has a tutor from school under a 504 to come to our home three hours a week. That's all he can do. We attempt more but it's not possible yet. He is emotionally better and physically stronger but any school work fatigues him with in 45 minutes. Its so frustrating I know but remember how our great forefathers educated themselves? A tutor came (if they were lucky/wealthy( a few hours a week to their homes). My straight "A" advanced student son is NOwhere near what he was two years ago (yet) Stay encouraging, let him go at his own speed and just be thankful that you are MOVING FORWARD! Our son can't read at this point long paragraphs fatigue him the most. The 504 was a good to start but in order for the school to continue the modification's we will now need an IEP. If he can read, just let him go there for awhile. The more we stress out about "falling behind" and college level classes!! The worse it will be for him. Most of the kids I have spoken with or read about, catch up fine in the end. He has been through a huge trauma!! DE-stressing and healing is what he NEEDS now. He needs to know its going to be OK!! God bless and hang in there.