I need IEP help!

[airial95]

We found out a few weeks ago that our son qualified for ESE pre-K 3 based on his PANDAS symptoms. We have the IEP meeting next week to draft his plan, and the school district called today in total confusion.

 

They've never dealt with PANDAS (not surprising), and they've requested to get additional medical information from Dr. Murphy because what our pediatrician sent was helpful, and qualified him for the OHI designation, but it didn't give them enough information as to how the condition will affect the learning environment - so they need more from Dr. Murphy. OK - fine.

 

Then she proceeded to tell me that they are struggling writing measurable goals for my son since when he's not exposed and under control (at this point which is more often than not) his progress is above average - their normal practice (has to be able to complete a skill 4 out of 5 times for mastery for example) won't really apply, since he'll be able to do that no problem when not sick. (FYI - my son is extremely sensitive to even exposure, and can have several great weeks at a time at about 85% or so, and just has to look at someone with strep to take us tumbling downhill for a couple of weeks - so we know we're going to have a constant up and down struggle with school.)

 

They've asked me for suggestions, or preferably examples, from IEP's of others who have PANDAS. I've searched the forums and found some useful suggestions and tips - but I don't know how to turn those suggestions for accomodations into measurable goals.

 

I was hoping all of the wonderful moms and dads on here could come through (once again!) with some help with this. Our son is only 3, so some of the issues don't really affect him yet (decrease in handwriting, math skills, etc...) so that makes it tougher.

 

I'm very uptight about this whole process, because we really want to make this a solid plan right from the beginning for a few reasons. One is so we have a clear base in place as to his dx, needs, etc... so we don't have to have a "what is PANDAS" discussion every year. But more importantly to my husband and I - if we have a well done IEP and the public school is not able to adequately accomodate our sons issues (which based on our early interaction with them, and the input from our special ed advocate - it's unlikely they will), we will be eligible for a considerable amount of state funding towards private school. We're hoping that the public school will be a good place for him, but we'd hate to have to waste years reworking the IEP and trying for a year each time before we can declare eligibility for the scholarship. (You must have an IEP in place for a year).

 

Any help or suggestions - specifically on "measurable goals" would be GREATLY appreciated!!!!

 

Thank you all!!! I don't know what I would do sometimes without all of the help out here!!

[peglem]

I would think the goals would be the same as other children of the same age, unless your child has particular deficits that need to be addressed. Usually this goals are taken from prior assessments. I think I'd be paying very close attention to the accommodations that will be needed in case of a PANDAS flare- those can make or break the ability to meet goals.

[mama2alex]

We've been through a similar process, as we requested a 504 Plan from the public elementary school last year (although we were not successful, and now have him in private school). I'm not sure I understand what they mean by "measurable goals" in this context. The purpose of an IEP is to make sure that a child with a "disability" receives the free and appropriate education to which he/she is entitled by law. As far as I understand, the school has to provide accomodations so that your child can receive that. It doesn't involve setting him up on a program where HE has to try to achieve goals!

 

Now if they mean what are your goals for the IEP, then that's different. These were the three general goals we laid out for our son:

 

(1) provide practical support to help get him to class on days when he is experiencing separation anxiety (especially during flare-ups),

(2) minimize his incidence of school refusal/absence by ensuring he has a positive, healthy and safe experience at school, and

(3) ensure that inappropriate behavior is addressed successfully and in ways that are not detrimental to his health or self-esteem.

 

Then, with the help of his doctor, we laid out very specific accomodations that we thought would support these more general goals. The letter outlining all of this came directly from the doctor.

 

I hope this is helpful! PM me if you would like a copy of the letter.

 

Also, maybe you can ask your special ed advocate for his/her input on the school's request. It sounds strange to me -almost like they are trying to throw up a road block (but of course I tend to be a little suspicious after our experience ).

[thereishope]

Even though you don't have the issue of a decline in math skills or writing due to age, in preschool they will start practicing writing letters. In preschool, my son brought home homework to practice letters and it was very difficult to get him to do it. Sitting still was hard, concentrating was hard and (if I remember correctly) getting him to remember how to form the letters was hard (this may stem from the same cause as older kids who have deteriorated penmanship skills). So, mentioning handwriting at the IEP mtg may be worth it. Get as much in as you can now because it's hard to revise IEP's in the middle of the year.

 

How is he with his social skills right now? Does he respond to questions? Participate in group activities or answer when questions are directed to a group? Does he sing with the class? Does he migrate to specific centers or toys? These questions may lead you to realize what he needs to work on. These were some examples of the issues that were present when my son went to preschool.

Edited October 13, 2010 by Vickie

[MomWithOCDSon]

We've been through a similar process, as we requested a 504 Plan from the public elementary school last year (although we were not successful, and now have him in private school). I'm not sure I understand what they mean by "measurable goals" in this context.

 

Our DS13 has an IEP. "Goals" are actually part of the framework, and they do apply to the child, though they also provide a guide for the staff to participate and help the child ultimately achieve a goal.

 

For instance, our DS has trouble organizing his materials and feeling prepared for his next class; this disorganization and corresponding "uncertainty" and anxiety over the disorganization is a much bigger issue during exacerbation. So, one of the written goals in the IEP was that by such and such a point in time, DS would be able to organize his materials from his locker for each class, without additional intervention, guidance or help from his caseworker or another adult. The goals also include "steps" for achieving the ultimate goal, so steps for this instance included his caseworker helping him organize his locker initially, then helping him to pull the proper materials for each class for a while, then stepping back and only pitching in when DS specifically requested assistance, etc., etc., until DS reached the point where he had "achieved the goal" and could handle this set of tasks on his own.

 

So, depending upon your DS's behavior set during exacerbation (and does any of it linger to a lesser degree outside of exacerbation so that it cues the staff as to what to look for . . . as in, an "exaggeration of . . . "?), you could set goals accordingly. Let's say that, when he's been exposed, he cannot handle scissors appropriately; he gets frustrated and refuses to participate in the activity, or he hurls the scissors across the room or cries, etc. Maybe even outside exacerbation, he finds handling the scissors challenging. So the goal could be something like "DS will be able to cut simple figures and straight lines with appropriately sized scissors." Then he would get the necessary help, support, encouragement, patience, etc. from the teaching team/caseworker to achieve that goal over time, with practices provided, no negative consequences if he doesn't complete an activity, alternate activities made available if the primary one is too frustrating for him, etc.

 

It will be tricky if your DS has absolutely no sign of age-inappropriate behavior or challenges outside of exacerbation or exposure, and those periods prove to be few and far between (crossed fingers!). Unfortunately, if that's the case, one of two things might occur: 1) the staff will become complacent, thinking that your IEP is "overkill" and the result of a hyper-vigilent parent and medical team, and they'll slack off keeping an eye on him, only to be really thrown if and when he goes through a new exacerbation; and/or 2) if he makes it through an entire year without really needing any of the accommodations recorded in the IEP, the school may recommend it be terminated. I've been told more than once that if our DS doesn't utilize the accommodations provided him, they can and likely will be stricken from the Plan. That's probably more the case in the upper grades, but something to be aware of.

 

On the other hand, what can also be written into the IEP and will likely hold, in and out of exacerbation, are accommodations that help keep his exposure low, like allowances for extra hand-washing, alternate activities in a "quiet corner" of the room with 1 or 2 other visibly healthy kids if there's another kid or kids in the class snuffling or sneezing or seemingly otherwise likely to exposure your DS to something he'd be better off without being consistently in proximity to. Same-day notifications to you regarding strep or other illnesses in the classroom. Stuff like that.

[T_Mom]

Good for you that you are getting an IEP established -- should give you "the ear" of the staff in a helpful manner! (I hope!)

 

What I would do with a preschool child is think about what you want from the "school" experience this year.

 

For example, in our school (older grades) I asked the teachers last week to please complete a daily "OCD checklist" of behaviors (the checklist was generated by myself and the special ed. teacher given what we were seeing in behaviors specific to the child.) Are there any such "behaviors or symptoms" that you want to know about on a daily or weekly basis? How can the teachers be your eyes and ears during the day?

 

Would it help you to have modifications of any type in the setting?

For example, do you want your child to have more time for tasks? If they are going to qualify the child for an IEP then they may want "measurable goals"... many of us have opted for the 504 Plan model of support in schools, instead of an IEP.

 

A 504 Plan provides adaptations to "even the playing field" for a child, but you do not have to get into the measurable goals and objectives.

 

IF on the other hand, your child has obvious areas of need, where developmentally he is behind his age group peers, then you will want those measurable goals to track his progress developmentally and to ensure those skills get the attention they deserve. All the best to you as the year progresses.

[kimballot]

Hi Arial - Glad to hear you are working on this while your son is in preschool. Good job!

 

First off - I know you want an IEP for your son, but an IEP may not be appropriate - and that may be why you are having difficulty. In order to qualify for an IEP, your son must have had an evaluation by some professionals. What were the problem areas that were noted? That problem list should be the basis of your goals.

 

For example, if one problem is that during an exacerbation your son tends to run out of the room when he is upset, then a goal would be something like: Johnny will ask to sit in the quiet area when he is upset and will remain in the area until he is calm, without running out of the room, 100% of the time.

 

Try to get goals to be more than 80% of the time - If your child has PANDAS, then your goal really needs to be 100% or close to it, because you really want them to be able to display the behavior both in and out of exacerbation.

 

I have to dig up my son's preschool IEP, but it focused on not hitting other children, asking for toys rather than grabbing them out of other kids hands, using polite words when speaking to other children, and using his words to tell the teacher when he needed something.

 

As he progressed to kindergarten and early elementary school, the goals changed to not running out of the room, controlling his behavior, and making friends. I think the handwriting goals started in first grade. Now he is 13 and his goals have to do with organization, turning in legible work (written or typed), and completing work on time.

 

If your son does not have specific problems during an exacerbation that you want to work on - then a 504 plan would be more appropriate to give him accommodations so he can be successful.

 

I hope that helps -

[Phasmid]

Hi,

 

I don't have much to offer, except that I think a 504 plan would be more appropriate immediately. This can be amended, or changed into an IEP at any time with the proper testing to substantiate the needs.

 

A 504 can be as simple as you wish it to be for now, just to get the ball rolling. I just went through the process and it required no testing by the school. I am in California and your state may be different. What we established was just a few things based on his episodic behaviors and academic performance.

For example, during an exacerbation (I hate even SAYING that word!), he becomes extremely impulsive, forgetful, moody, and cannot process oral instructions. In this case, I will be notified right away (rather than not having knowledge that he hasn't been turning in work all week) so that I can intervene early.

He is allowed to turn work in late (because of anxiety, he cannot go up to the box in class if he misses collection- he'll just not turn it in.

He will have subtle reminders to get his homework out and turn it in. His short term memory loss is improving, but still needs help.

He will be watched for extreme anxiety in the classroom and will be able to retreat to a safe room and counselor.

I am notified of strep. cases and pneumonia at the school as they arise.

 

Any of this 504 can be amended at any time as I see fit according to how he is doing, per California law. Also, the 504 is evaluated annually by law. Because we have no motor or vocal tics at this time (haven't had for nearly two years), I am not asking for accomodations related to these (home study, work in another room, testing in resource room, etc)

 

 

The documents that I provided were:

 

Signed letter from neurologist explaining the diagnosis and statement of a need for accomodations.

Paper listing PANDAS under complications of streptococcal pharyngitis

 

I think you need to make it un-overwhelming for everyone involved for starters. This is why 504 might be best while your child is still very young. Hope this helps...

 

 

 

 

[Stephanie2]

I have looked into the same scholarship money for private school. Are you aware, though, that you have to send him to a special needs private school that is approved by the state? Just making sure you know that. I wonder if he would need that level of accomodation.

 

I have a 504 set up for my oldest (DS5 - kindergarten) and the only accommodations we have in place are "extra time" b/c his OCD makes him "hyper-focused" on his worksheets - like he can't finish and move on b/c it is never good enough. That is about it, b/c he has surprised all of us and has been managing pretty well. I may, however, have to later add that the tics are to be ignored. His kindergarten teacher is really accomodating, but she tries to make him stop his "noises" from time to time. So far it is not a real problem at all b/c he rarely tics in the classroom, but I don't want him to get in trouble...

[airial95]

How is he with his social skills right now? Does he respond to questions? Participate in group activities or answer when questions are directed to a group? Does he sing with the class? Does he migrate to specific centers or toys? These questions may lead you to realize what he needs to work on. These were some examples of the issues that were present when my son went to preschool.

 

When he's not exposed or in exacerbation, his social skills are fantastic. Perfect manners, outgoing, friendly, good at sharing and taking turns. He loves circle time at school, and is very smart and interactive. When he's "off" (as our day care has taken to calling it) he will not go near other children, will not speak, will not respond at all, and refuses to follow any directions or join in any activities. I think that's why we're struggling so much with this - he is the classic textbook case of "sudden onset". He reacts significantly only when exposed or when he catches strep.

 

We are on long term abx because he is very suceptble to catching it - so that has helped immensely, and we have some residual OCD and ADHD issues between flare ups, so on the whole he's about 85% normal right now. But we've gotten it down to only a few "episodes" a week, and then the'ry relatively brief compared to exacerbations (which we all know are 24 hrs a day!!)

[airial95]

Thank you all so much for the input!!! You've given me some really great ideas.

 

We are lucky, that right now we are at about 85% - with residual OCD and ADHD being our lingering issues. However, when he is even just exposed to strep (and to a lesser extent anything else) everything goes to ###### in a handbasket pretty quickly.

 

His specific issues are:

violent aggression to other kids (unprovoked, the child just had to be within reach)

Complete inability to make choices

Obstinant defiance (adamantly refuses to follow directions)

facial tic (not severe)

Severe rages and tantrums (usually triggered by the increased OCD anxiety).

 

Your suggestion of goals has really helped. One of the main things we want to get out of this is that when he is in exacerbation or having sever anxiety, that he can "self soothe". Right now, at home, when the rages hit I have to hold him in a wrestling hold and rock him to bring him back. It takes a few minutes - but if I have the hold just right, it works like a charm every time. His teachers aren't going to be able to do that for him in school, and as he gets older, that's not going to work. So we'll need something like allowing him to go to a "special" corner of the room to calm or be alone when he feels anxious.

 

Knowing that the goals they're referring to can relate specifically to his behaviors really helped. I think I was stuck thinking about just academic goals.

 

Thank you all again!!!

[airial95]

I have looked into the same scholarship money for private school. Are you aware, though, that you have to send him to a special needs private school that is approved by the state? Just making sure you know that. I wonder if he would need that level of accomodation.

 

 

Stephanie,

 

Yes, we know that it has to be a special needs private school. We're very lucky though, because here in Tampa there are a few really good options for kids like him. There is one that focuses on kids with average to above average IQ specifically dealing with ADHD and anxiety disorders. We've already toured the school and observed classes there, and we think it would be a really good fit for him. We even saw some kids have meltdowns in class and how the staff dealt with them was nothing short of amazing!!

 

There is also a charter school (so we wouldn't need to use McKay) for high function children with autism, sensory and axiety disorders that is fantastic here too. We haven't had a formal visit or tour yet (need to get the IEP first for eligibility) but we've had conversations with the director and it sounds like it might be a good fit for him. A lot of the kids there are Aspbergers and such (which as we all know, has similar challenges to our PANDAS kids).

 

You need the IEP in place to be eligible for the Charter school, and the private school we're considering is over $16k per year, so of course the McKay scholarship would work wonders! That's why we're focusing on all of this now (and going IEP vs. 504) so we can have those options readily available to us if we needed them.

[Stephanie2]

Thank you all so much for the input!!! You've given me some really great ideas.

 

We are lucky, that right now we are at about 85% - with residual OCD and ADHD being our lingering issues. However, when he is even just exposed to strep (and to a lesser extent anything else) everything goes to ###### in a handbasket pretty quickly.

 

His specific issues are:

violent aggression to other kids (unprovoked, the child just had to be within reach)

Complete inability to make choices

Obstinant defiance (adamantly refuses to follow directions)

facial tic (not severe)

Severe rages and tantrums (usually triggered by the increased OCD anxiety).

 

Your suggestion of goals has really helped. One of the main things we want to get out of this is that when he is in exacerbation or having sever anxiety, that he can "self soothe". Right now, at home, when the rages hit I have to hold him in a wrestling hold and rock him to bring him back. It takes a few minutes - but if I have the hold just right, it works like a charm every time. His teachers aren't going to be able to do that for him in school, and as he gets older, that's not going to work. So we'll need something like allowing him to go to a "special" corner of the room to calm or be alone when he feels anxious.

 

Knowing that the goals they're referring to can relate specifically to his behaviors really helped. I think I was stuck thinking about just academic goals.

 

Thank you all again!!!

 

Something about this is making me think of gut bacteria, caused by the chronic abx use. My boys get more aggressive with clostridia and other but bacteria than they do with pandas (in fact, my 5yo ONLY gets aggressive with gut bacteria). Also causes OCD... We need to talk!

[kimballot]

Does your son work with an OT in school? Your description of calming him sounds lots like sensory tools to me, and the OT could help him to move that toward self soothing.That may help you with goals as well.

[airial95]

Does your son work with an OT in school? Your description of calming him sounds lots like sensory tools to me, and the OT could help him to move that toward self soothing.That may help you with goals as well.

 

He's not working with an OT - just behavior therapy right now. He passed his OT screening with flying colors - although he was slightly below average on some of the sensory things - but still well within normal range.

 

I actually learned that calming trick reading about calming kids with sensory issues and decided to give it a try. We just ordered one of those sensory swings that are cloth and wrap the kid entirely inside. We're hoping that might mimic what I'm doing enough to allow him to go in there when he needs to and calm himself without mom having to recreate moves from the WWE!