Gifted Issues Discussion homepage Forums Twice Exceptional Systematic Desensitization over summer break?

Warning this is long!

As you may recall last summer we had to decide between placing DD7 in an expensive private school that we were certain would have the supportive nurturing environment needed to control her anxiety or the local public where she would receive the special ed services needed to address her newly diagnosed LD issues. The district refused to provide support services at the private since it is located in the neighboring city and that city had utterly failed DD the previous year at Awful Interdistrict Magnet (AIM). Thus the anxiety issues - all completely triggered by her horrible kindergarten year at AIM.

SO after much discussion, research and beating of the chest the local public was able to place DD in a classroom without a Color Chart - the public shaming classroom management technique that had become her biggest issue. The school year started off better than anyone could have dreamt possible as the school personnel totally invested in containing DD's anxiety and meeting her needs. After a few months, though, her anxiety was triggered when her class had a substitute teacher who yelled and threatened - triggering her AIM anxiety. From there she developed debilitating migraines, had a neuropsych eval that was deemed invalid, began testing for a suspected seizure disorder and had her anxiety triggered by school personnel who then proceeded to punish her anxiety response as an example of bad behavior. Things got really bad for a while, we hired a consultant and he started working with the district's director of special services (DSS) rather than us trying to work with personnel in the school. Eventually the DSS actually wrote a letter acknowledging that the school had violated DD's IEP, that they did not fully "appreciate" her anxiety and assuring that they would address it more appropriately in the future. Good progress - right?

So a couple of weeks before the last IEP meeting of the year where we set our goals for next year we meet with DSS to decide everything in advance. I provide 4 pages of written notes outlining what we see as DD's current level of functioning, what support we are requesting and describing the kind of learning environment she will need for next year. For example, a classroom management style that utilizes positive reinforcement rather than yelling, threatening, scolding and punishing, that she be placed in a classroom away from aggressive, disruptive or bullying kids, NO COLOR CHART, etc. There is a lot of talk behind the scenes that they are planning to move DD's first grade teacher to second since they know that her classroom style works for DD. DSS tells us that there has already been a lot of discussion about DD's classroom placement for next year "because the team understands that decision is critical." Neither he nor anyone else from central office is going to be involved in that decision - it is totally up to the principal. Yeah, the same one who was recently written up for intentionally triggering DD's anxiety and then punishing her for it. DSS tries to convince us that the principal "will make the best decision possible".

Soooo we have our IEP meeting the other day, after it has been delayed to the next to last day of school. It is a very good, very productive meeting. DD is just about on grade level with most things (a bit under on her DRA testing but a bit ahead on words per minute - impressive for a dyslexic kid.) Fine motor and anxiety remain her 2 biggest issues but all services are remaining in place or being increased and they are going to do an assistive technology eval in September. Then, during the last few minutes of the meeting we ask about classroom placement, explaining that she has been asking for a few months already about it and is worried about the color chart issue. We need to let her meet the teacher, see the classroom and convince herself that there is no color chart so her anxiety doesn't spiral over the summer. Silence. Then we are informed that they will not be a making a classroom without a color chart available, the principal adamantly refuses to even ask the 4 second grade teachers if any would be willing to adjust their classroom management technique and basically says it is DD's problem - not hers. Too bad she just needs to adjust.

Do I have to tell you all hell broke loose? Our consultant informed them that we would be going to due process, I reminded them that we already have an admission that they violated her IEP once, I told them that we considered the first violation a FAPE violation and this would be the second, etc, etc, etc. If they knew that they were not going to make an appropriate classroom available they had an obligation to have introduced a desensitization plan, informed us so that we could look at other options, etc. Our consultant said in his 40+ year career he had never seen anything like it, if he hadn't been sitting at the table he never would have believed the way the principal behaved, etc. We were discussing not only due process but Dept of Ed complaint, Civil Rights violation, etc. It was a real mess.

So the next day we had a 3 hour half day of school to see if there was anything to be done about at least showing DD a classroom to see if we might be able to contain the anxiety response rather than just have her walk into school the first day and completely lose it. I called the spec ed teacher who called her boss - who will actually be taking over for DSS as he leaves for a new district. She proposes a systematic desensitization program to be done over the summer. On one hand I am relieved that at least someone from the district seems to finally understand what needs to be done to address DD's anxiety but on the other hand - really? Over the summer? This is her time to relax, get over her school based anxiety and enjoy the enrichment program we have set up. I feel like I can't turn it down but I just don't know enough about it to know if they are planning to do it right.

Does anyone have experience with this? Is it really possible to address a classroom based issue over the summer when the triggering phobia isn't actually accessible? (They can get access to an empty classroom I'm sure but without her seeing it utilized how can she really be desensitized?) How do I know if the person doing this is really qualified to do it and not someone who just read about it online? Is 8 weeks really enough time to go from idea to having her enter a classroom? I am thinking this would be a good idea to do next school year *in conjunction* with an appropriate classroom placement not instead of one. What other questions do I need answered? I also think this would need to encompass all of the issues from AIM not just the color chart. And I view the use of a color chart as an indication of the classroom management style of the teacher using it and that does not bode well for DD's success...

We are meeting with this new DSS tomorrow and she is supposed to be a VERY tough person to work with. I am thinking that regardless of this offer we probably need to get a strongly worded letter from a spec ed attorney putting them on notice that we consider the principal's refusal to provide an appropriate classroom environment to be an issue.

Sorry so long but I need input before our meeting tomorrow and want to avoid having to come back and provide missing information if I can. Thanks in advance.

It may be that the school cannot accommodate absolutely everything that your daughter needs. What will you do then?

wow. so the principal refused to even consider your childs disability in classroom placement and said her disability is her problem to "get over". Did you get this meeting on tape?
Basically he is refusing to provide FAPE and blaming your DD for her disability.
Have you talked to the school super?
So since they have said that your daughter needs to get over her problem and they are offereing a solution ( sort of) i think you do have to go along with them and see what they plan. But you can ask that the program of desensitazation be evidence-based and put together and over seen by an expert with experience in working with children with anxiety disorders and PTSD. ( this is not the sped head but a credentialed professional in the mental health field with expertise in your DDs area of disability that limits her access to FAPE) If they cannot provide this then you have to consider whether you have evidence that based on the principle's statements that he cannot provide an appropriate classroom to meet your childs needs so she can have access to FAPE, you could have grouds for unilateral OOD placement at district expense.

Yep, agree with Master of None that you should consult a specialist dealing with anxiety disorders. I would absolutely not wait the summer out and seek treatment privately ASAP...while asking the school district to coordinate with this expert.

Oftentime 'simple phobias' (which just mean having a phobia in one specific area...not that they are actually SIMPLE) can easily grow to other phobias, trigger panic attacks, more serious social phobia, and sometimes agoraphobia (not wanting to go out and about), which is incredibly debilitating.

Teaching your DD a regulated series of relaxation techniques could be life-changing for her, and the school probably just doesn't have the expertise for such (just like they don't specialize with bipolar mania management or other specialized mental health issues).

I would use the summer to help her manage her anxiety as much as possible...not by avioding the issue, but by getting tools to cope with it. In the long run, having her work to tolerate the anxiety-causing issue (whatever it may be) will be a huge success for her and for future potential phobias (say she starts to become afraid of food, or water, or windows leading to open spaces, all crippling phobias I've seen in my clients).

Med therapy can be a helpful tool in clients who cannot even tolerate the initial anxiety of systematic desensitization. Most studies with adults conclude that medicine and SD/cogB therapy have pretty equal success results, with the therapy edging the medicine out long-term.

Effective meds for anxiety, usually SSRI's, take some time to get up to therapeutic level. Generally 4 weeks, but sometimes 6-8 weeks depending on dosage adjustments. So, another reason not to wait if you go that route.

I'm sure you know this, but really try to sheild your DD from your own anger/anxiety/frustration with the school issue. It's amazing how kids can pick up on even our subtle cues. They look to us to know when danger is signaled, precisely why my DS5 gets nervous during tornado season (as I have a friend who's house was demolished in one last year...and it's got me on edge).

You sound like an amazing advocate for your DD.

Oh good grief Pemberley - I can't believe that this is happening - ugh! I was just thinking of you the other day and wondering how everything had gone this spring... I'm so sorry to find out that you've had this come up.

I don't have any experience with desensitization, but it seems to me that it would be difficult to do over the summer, and most likely runs a high risk of possibly causing undue anxiety rather than eliminating it in the fall. But that's just my mom's gut feeling, not based on any true knowledge. I also have a strong opinion about the whole color chart thing, and even *if* they must be used in a classroom, they don't have to be used for every single student - if a child has an IEP that says "no color chart" then, um, no color chart!

Anyway, fwiw, I agree with all that g2mom said, and also with mon that the work on anxiety and phobias needs to come from a trained professional who really understands it and has worked with children to help them overcome their phobias. I don't have confidence that you'll get that through the school district - and I wouldn't rely on it through the schools.

What does your advocate advise about whether or not to accept the district's proposal for desensitization? I can see accepting or declining - I do think that typically it's important to accept in good faith to show you're trying to work with the district (when you're headed to due process)... otoh... I also think you have enough valid evidence of anxiety backed up by professional evaluations that it wouldn't go against you to decline and file due process. Argh all around!

Let us know how everything goes,

polarbear

for the meeting tomorrow.
Dont decline anything they offer. this will make you look like the bad guy if you go to due process or you want to get reimbursed for unilateral placement out of district.
Agree to listen to the program they develop, but stipulate it must be evidence based and designed and overseen by a mental health profession with experience in your dd's area of disability.
Just becasue you agree to let them plan doesnt mean you have to present you daughter to them without your psychiatric professional reviewing and approving their plan, but dont tell them that part yet.
Also will you be taping the meeting?
if not you need to take someone with you to take very close notes and send an email summary of what you think the meeting discussion and conclusions included. to the sped director and cc anyone else important including her boss and her bosses boss whoever they are.
It is all about documentation at this point. they have made some serious errors that could get you placement at the schools expense. it is important that you dont make any counter errors that allow them to blame you if you go to court. it is time to decide what you want from this school system and if they can provide it. if they cant, its time to get a strategy and collect the documentation to move on at their expense.
have you read from emotions to advocacy?

Can you send her to the private school?

Thanks for all the responses so far. I really can't believe that this is going on - especially after we had gotten off the such a good start and the director of special services really went out of his way to address the IEP violations and get things back on track. Unfortunately I feel like we are trapped at the public because of her LD issues. If those didn't exist she would have been happily enrolled at the private and I am sure absolutely loving school. Not only does the cost get to be prohibitive if we have to provide the special ed services ourselves there really is no practical way to get it to work. They don't have staff to provide services - only an OG tutor we would contract with privately at an additional cost of almost $9000 per year IN ADDITION to the already steep tuition. OT, Speech Therapy, Assistive Technology, the neuropsych eval they are paying for, etc would all have to get figured out. It's just not feasible unless due process leads to the district being ordered to provide it in an out of district placement. That is basically the alternative that we would request if they are unwilling or unable to meet her needs. Expensive for the district, a mess to coordinate and not a real simple way for DD to get her education. We have also discussed doing special ed at the school and then requesting home bound tutors rather than classroom placement but I don't think that is in her best interest.

During the IEP meeting our consultant asked about placing her in a second grade classroom in another school within the district but with all the yelling going on I don't think he got an answer. He also made the request that DD's first grade teacher be moved to second grade (they are rearranging teachers due to numbers so there is a lot of moving going on. It is a VERY reasonable request and as I mentioned in my OP it was being discussed as the best solution prior to this meeting) again with no answer. I suggested that since this teacher is universally respected and has proven that she can work with DD that the school use her as a resource to train other teachers in better classroom management techniques. The principal said in a very nasty tone of voice that color charts are used so extensively "because they are so effective." I wanted to point out just how poor a system they have been shown to be but really didn't get the chance in all the mayhem.

I think I really have to find out who is going to be doing this and exactly how they plan for it to work. I need to strengthen my argument that this needs to be done along with putting her in appropriate classroom not instead of it. I think their plan is to do this and then put her in a room with a color chart but tell her that her name won't be on it or something like that. Just seeing other kids being punished and knowing she is in an environment where threats are used to control the kids is enough to set her off big time. That's why I don't know how this can be done during summer break if she can't actually see it being used to control other kids in the class. Wouldn't that be a critical component?

My pediatrician gave the names of several local therapists and I am hoping to be able to speak to them in the morning before the meeting. The one I was able to talk to already says she is not the right person to help because she doesn't know a lot about desensitization and has not done a lot of advocating in schools. She did however ask if we had considered sending DD to the specific private we had selected, said she was surprised they were insisting on using a color chart since "those public shaming systems have been discredited", and asked how DD was to be expected to function in that school if the principal is creating this kind of learning environment. For someone who doesn't think she is the right one to help us she really hit the nail on the head with her off the cuff comments...

DD is already on low dose Elavil for her migraines so I don't like the idea of adding an SSRI unless absolutely essential. DD spent some time in rooms that had these charts on the walls during occasional activities and tier time so I don't think the initial exposure will be that extreme. She had gotten comfortable in the school for more than a month before going into one of these rooms the first time and we talked her through it. We explained that the chart was on the wall but it wasn't going to be used while she was in the room - no one ever had their color changed in front of her, nor was it ever mentioned. She also would sit with her back to the chart so she didn't have to see it.

I think it's a great point to make that they already pulled the rug out from under her once after making her comfortable so we are very concerned about them doing it again if they put her into a classroom that is likely to trigger her even after putting her through this process.

OK so work on getting our own expert, make sure the district's plan involves someone with expertise in anxiety disorders (PTSA and school anxiety in particular), have the ability to approve their person and verify how they plan to work this. (She is enrolled in camps for the next 4 weeks that she is really looking forward to and then we have vacation plans for the next 2 weeks. This is not going to be easy...) I still push for an appropriate classroom placement and I still bring in a special ed attorney to put them on notice and/or pursue due process, civil rights and dept of education complaints with an eye towards having a plan in place for her to be in school (with appropriate services in place) in the fall regardless of what the principal plans to do about her classroom placement.

What am I missing?

you are missing everything i have said about a unilateral placement at the private school at the public school districts expense, with them footing the bill for the LD education added on. maybe even lindamood bell at public expense. but at the very least,evidence based multisensory learning ( wilson or OG).
they have really screwed up here from a legal standpoint and you dont show that you know all your rights and are going to take advantage of it. legally.
Get the Sped atty now before you make a mistake that will invalidate your right to OOD ( that means Out Of District school at public expense) this is the holy grail for Sped. they have done badly enough for you to get it, but only if you do all the right things going forward. this is a chess game and you could win it, but you dont seem to know you are even in a oneupmanship game here. the stakes are your kid's education at the private school.
the mental health person is telling you what to do. (and that she will not be your person not becuse she doesnt know whats going on, but becuse she does and because she doesnt want to go to court and has too much to loose if she tells the truth)
You are not playing with the people that make the decisions yet. principals and sped personel are not the decision-makers here.
get help from someone who has fought your school district and won.

Pemberley,

Horrifying behavior on their part. You did well to keep your temper.


However messy, you are doing it right. A Dept of Ed complaint can bring the state down on them like white on rice. They do need to understand that having violated FAPE once, if they do it again, they are going to be up against it.

(If this gets that far, one can also let the Superintendent of Schools know; they hate court cases, because it's very expensive, and they are often totally unaware of what's going on in the district. The Superintendent might find it prudent to cut to the chase than to fight in court.)


A cognitive-behavior therapist could do this project. She's a bit young for CBT, but seemingly quite self-aware, which helps. They have curricula for things like PTSD and anxiety, desensitizing people who have phobias about spiders, grocery stores, particular situations, etc. If the anxiety is targeted just to the color charts, then that's in some ways easier to solve than free-floating anxiety, because it is indeed possible to prepare her for this.

However, I would not want just any special ed teacher doing this project; I would want someone with serious expertise in working on phobias and anxiety. There are curricula available, but you want someone who will be trained enough to know if they are making anything worse in the process. My go-to person would be a licensed CBT.

I agree with PPs that medications for anxiety (usually an SSRI) can make a huge, huge difference for an anxious child. Life-changing in our case.

And despite the above, while I do feel these triggers can and should be worked on whenever your outside professional thinks your DD is ready to try that, I do not think that the school can force your DD to be desensitized to all her triggers in the next few months. The process of getting over a phobia can be a really big deal, and stressful; you and your professional (and your DD to an extent) get to decide when she is ready to tackle that. The school does NOT get to decide that, especially if they are not providing the right help. It may help after discussion with a CBT to get a letter from them saying what their plan is, and what accommodations are needed in the meantime.

The school does have to provide her an appopriate public education; appropriate meaning an education that freaks her out as little as possible, yes, even if they have to do something differently in that classroom.


What are the other issues, remind us?

And yes, I agree, the color charts are truly awful for anxious kids. There are better ways to do it. Teachers are not trained well in this essential matter.


Is Consultant coming to this meeting? I wouldn't want to do anything without her at this point. You need an eyewitness gathering information from a legally aware point of view.

Document *everything*. Ask the new DSS to confirm the plan (see if she says the same things Principal said; it may well be they are not on the same page, document that too). If it does not go well, calmly let her know that this plan she is proposing is a violation of FAPE that will have serious psychological consequences for your DD, and how does she propose addressing that?

Maybe the district can pick up the CBT bill for the summer?

Always cheering you on, Pemberley-- hoping it goes well tomorrow.

DeeDee

Pemberley, are you going to record the meeting tomorrow? You can ask your advocate what your specific state law (possibly district policy?) is, and you may find out you need to ask permission first, but at this point, if you haven't already, I'd start recording the meetings.

I'd also be sure you have your advocate present tomorrow - if your advocate can't come, I'd postpone the meeting until a time you can all be present.

I also believe that it's time to bring up the points g2mom is making if the school sticks to their refusal to budge on the color chart - if they can't accommodate your dd at this school the district needs to see to it that she has her FAPE, and she can have FAPE at the private school with services and tuition provided by the district. They are, of course, not going to want to do that - but they need to know that's on your radar and you have the beginnings of a strong argument in favor of it.

Good luck tomorrow - let us know how the meeting goes!

polarbear

Yes, consultant will be there tomorrow. I do nothing these days without him. In fact I told him if we go to court I will pay both him and the attorney to be there. We have always had as our worst case scenario that we pay for the private and sue for reimbursement. I can't believe that is the best way to go, though. They have indeed screwed up royally and I have no doubt we would win at due process - and they understand that too. I would rather get them to agree to "fill in the blank solution" rather than fight all summer. During the meeting I did say "Oh so 'town' is planning to pay for 'name of private' instead" when principal announced that she would not provide an appropriate classroom. I also casually (ok, maybe not so casually...) mentioned the civil rights, dept of education, etc when I contacted the special ed teacher before she got the new DSS to propose this plan. I don't think there is any doubt in their minds that we are both aware of DD's legal rights and that we are more than ready to fight tooth and nail to get her what she is entitled to. At this point it is more a matter of the best way to do it.

Both the consultant and I tried to reach the superintendent on Friday without success. He has a message in to the asst superintendent. A lot is up in the air right now as the district is doing a major reorganization of personnel this summer. I told the consultant that I want to act now with the attorney because they are in a shambles - the only person up to speed on the facts is leaving, the principal is out of control and they are scrambling to do damage control. We will discuss the attorney after we see exactly what new DSS's plan is. I assume consultant will call on our behalf later today or tomorrow and we will get that ball rolling.

What is lindamood bell? Not familiar with that term.

Just as the meeting was starting the other day I looked for a tape recorder. Our state requires consent from all participants to tape record and I am assuming at this point they would conveniently have someone object. I know that I sure would if I had that principal on my side...

Thanks for all the support. Our consultant has told me repeatedly that I am unlike almost any other parent they have to work with because I have done my research and I am really holding their feet to the fire. Each time I just smile and think of all of you. You are the ones that have made it possible so far. Now to take a deep breath and get over this hurdle...

Pemb, on recording:

Actually, we have a ritual at our meetings; I put my digital voice recorder on the table (you can get one at Best buy, or get iRecorder as an app for the iPad) and I say "would it be okay if we record? it's so hard for me to think and take really complete notes at the same time" [which we all know is a nice excuse] then the district person smiles and says "just so long as you know that we are also entitled to a copy of the recording on request." Done.

They've never needed the copies, we have never introduced them into a court case, but they were valuable evidence to have while we needed them. Plus: we found that people are nicer (less condescending, not as nasty) when being recorded.

A word of advice: now you've mentioned all those things, so they know about them. Don't make any more threats that you are not going to follow through on-- it looks like flailing, a bit, to them. If they do not agree to be reasonable in a way you and dd can live with, your best bet is not to threaten but to do.

You can send them a copy of your state dept of ed complaint, direct to the superintendent, when you file it, and so forth, if that is what your lawyer recommends.

I seem to remember that the private did not have the resources in place to handle dyslexia, anxiety, and all the other needs. Unless all that were to be paid for and added to the private scenario in a truly cooperative way involving the classroom teachers (this would be very hard to get), I still think your best bet is probably to straighten out the school you're in. I know that probably sounds insane, but that's what we did, and we were able to get the necessary people on the necessary learning curve so that our DS9 has had a few truly fabulous years there.

Good luck today,
DeeDee

Thanks DeeDee. Just to be clear, though, we absolutely will follow through on any and all of these courses of action. IF the spec ed attorney says to do it now it will be done now. I assume, though, that he will instead start with a strongly worded letter putting them on notice. Our consultant has been very clear who "the best in the state" is and has said that a letter from him "will REALLY get their attention." Probably this afternoon or tomorrow at the latest we will get that started. We need to know exactly what the district's plan is first though.

Thanks!

On the private school option -- is there one for kids with dyslexia? You seem to be talking about a specific private school, but I wonder if there's a school in the region that does specialize in these special needs. If it were to come to that (and let's hope it doesn't-- it seems that the present school is ultimately workable if certain structural issues can be worked out) a school focused on the special educational needs is the place you should be discussing.

Pemberly, I haven't commented much, but I've been reading along. Good grief. No person should be treated like this. Thinking of you and your DD. She's lucky to have you on her side.

GL today! Word of advice on picking a specialist, though the therapist you contacted seems sympathetic, she was probably being straight with you on little CBT training. Most master's degree counseling programs take a more family-systems or classic 'talk therapy' approach (which is wonderfully effective in many cases) BUT generally PhD pyschs have had more CogB training. A PhD's testimony also tends to stand up in court better. (i humbly say this as a master's level clinician...any CBT expertise I have is from post-Masters training of my own accord).

Meeting is over and really could not have gone any better. New DSS seems to understand the issues and will be approaching the principal as our "envoy" (her term not ours.) She asked what we want and we said the simplest solution is to move the first grade teacher to second grade. Otherwise to find a way to recreate that classroom environment, all while working with DD on addressing the anxiety from AIM. She said that they have another case where they are trying to undo the damage caused by a magnet but couldn't remember if it is the same one. I explained that having someone just do what current teacher does may not be enough because it is an entire approach to teaching that is different than that of teachers who rely on punishment and public shaming. I *think* she understands.

I told her that I fully support a desensitization program but it has to be done properly. "We need to be smart about this." I explained that I am concerned about it being rushed or done improperly and that I think it needs to be done in conjunction with putting DD in a classroom where she has the ability to access her education.

So we left it that she is going to try to meet with the principal to see if she is willing to work on creating this classroom environment. I made clear that we need to have DD in a classroom this fall and if the district is unable to meet her needs that our hands will be tied - we will have to seek placement elsewhere. I also told her that as a taxpayer I resent that this principal's ego is writing checks that the town will have to cash...

So I will keep you posted. I figure at the point either she will have an appropriate classroom at the local public or she will be at the private while we sue the school district. I will continue to seek out an appropriate psych but no longer think it is even an option for the school district to attempt this over the summer.

Will keep you posted.

So glad to hear it went well and they are willing to work with you.

My older dd, who is also an anxious child, went to a school starting in kindergarten where they used the color system. There was only 1 time she wasn't on green for the day and it was b/c I didn't return her progress report signed the very next day so they put her on yellow for that. Other than that she never had problems with being on any color than green and it still created anxiety and angst for her. She also had difficulties with anxiety with choosing what she would have for lunch, or who she would sit with. The whole ride to school she would agonize over it and cry that she didn't want to go to school b/c she didn't know what choice to make. I tried explaining to the school how anxious she was but b/c she didn't show any anxiety at school they didn't believe me. That school did more harm than good and I should have pulled her out when I had the chance.

She is in a much better school (doesn't use the color system) and her anxiety level have decreased dramatically since the beginning of school last year. FWIW she is dyslexic as well.

Great job, Pemberley. Your DD is lucky to have you as her champion.

DeeDee

No word yet on classroom placement but we started the ball rolling on the Spec Ed attorney. I have been talking to the therapists my Ped recommended. I found one I am comfortable with ("she sounds like me - I'm dyslexic and I went to Harvard") but she is only in the process now of being approved by insurance. I spoke to another today who made me feel like I need to take a shower. Advocating for your kid is tough enough. Having an expert talk down to you just makes it harder. I am HG myself, thank you, so you can go stuff your condescension.

Sorry had to get that one off my chest...

I think is is really crucial information and worth really paying attention too.

I also can't imagine what kind of a teacher can't figure out some other classroom management tool than the stoplight.

I understand the point about OOD and oneupmanship. Really I do. If she is at the private, though, it will be a battle to get all the special ed services she needs. I can unilaterally place her there with OG tutoring but it could be months until the other spec ed services are up and running via due process. The private has no way to provide them. The city they are located in will not provide them. My home district will not provide them at a private located outside the city limits. I therefore need to exercise this option as a last resort. It is not just money - DD will lose her OT, Speech, Assistive Technology and the neuropsych eval we have scheduled unless we are able to win at due process.

Our district is currently scrambling and I am starting the process with the attorney. I assume that someone in the chain of command will get this principal on a leash and order her to provide an appropriate classroom environment rather than risking OOD placement. We hope to meet with the attorney asap so that we can have contingency plans in place for if they do or do not provide an appropriate classroom.

I really can't believe it either. I assume that's why the principal refused to even ask them. For some reason she wants to flex her muscle on this one. It makes absolutely no sense and I am hoping it will come back to bite her.

Wait- does your child's teacher WANT to move grades or are you trying to get her moved?

As far as the color chart goes, it is not what I would choose to have in my classroom, but if the school uses it and accepts it, you really cannot expect it to be banned from the classroom your child is in just because of her. She could be exempt from it, if you insist, but she will still need to be managed behaviorally in the classroom just like the others. If she has huge anxiety just being in the room with the chart, she has to get her severe issues better addressed in therapy and/or through medication. Also, to say she has to be in a class without disruptive children is unrealistic- it is a class full of kids all who may be disruptive from time to time, and this includes your child. Maybe she needs a more specialized setting or a para. Sorry, but you are being unreasonable here. The fact that they are offering a desensitizing program is very nice- the teachers are not required to meet your child or show her around when school is not in session.

You know what, I call BS on this. I have been a teacher. I have seen teachers in action successfully manage classroom discipline issues without a color chart. And if a teacher can't come up with an alternative, and a principal can't support it, then they have no business being in public education. This is really not unreasonable or unrealistic to ask for.

Hear, hear, deacongirl.

The school is required to give her an appropriate education. That is, not what the school or any given teacher feels like doing, but what is deemed by the team (including parents and outside professionals) to be appropriate to that child. Let us assume that most teachers are professionals who understand the requirements of the Individuals with Disabilities Act.

Obviously, amob, no classroom of children behaves perfectly all the time; yet if PP's DD were seated next to a kid who has a record of serious behavior problems, and who troubles her constantly, it would make her anxiety worse. I see no reason not to accommodate this as a seating preference and as a consideration for reasonable classroom assignment, even as her parents simultaneously seek out therapy to help her cope better.

Amob, we had teachers who didn't feel like changing anything for our DS. They decided he was the problem. That was our worst year. He has since proven that with the right environment, and not unreasonable accommodations, he can be very successful in mainstream classrooms.

DeeDee

Thanks DeeDee and deacongirl. I have to say that I find it interesting that amob registered yesterday specifically to respond to this thread with an argument that is almost verbatim the principal's position. Not that it is unwelcome - I am always happy to hear alternate points of view. It helps me to understand the school's position and to formulate my response. I hope this was not a one-hit-wonder, though, and that amob sticks around to participate in the discussion.

To be clear we were given a stark choice last year - we could either address her anxiety or we could address her LD issues. Spec ed services would not be provided in the private we were certain would control the anxiety. In the end the school district assured us that they would do whatever was necessary to control her anxiety. It worked great for a few months and then it fell apart. It escalated to the point that this principal was involved in intentionally triggering her anxiety and then punishing her anxiety response as bad behavior. Does it not send a strong message that the district put in writing that they acknowledge violating her IEP and providing assurances that they would be certain to address her anxiety in the future? IF they were making a good faith effort to do this the problem would not be so serious. IF they were trying to control her anxiety and they knew that they did not have an appropriate classroom placement available wouldn't they have approached us prior to this so that we could work together to find a solution? Wouldn't it have made more sense to have us sit with next year's teacher and brainstorm ways that s/he could comfortably control the classroom and not trigger DD's anxiety? Wouldn't it have made sense to bring this to our attention so that we could have had that therapy/medication option explored properly? Instead their plan was to have her walk into a classroom on the first day of school, face her biggest anxiety trigger head on with no preparation and no support system in place. How can this be interpreted as acting in good faith?

Perhaps the constructive thing to do here is try to brainstorm other classroom management options that would both meet the teacher's need and not trigger DD's anxiety. Since the school district did not do us the courtesy of doing this perhaps amob can. I am serious in this request, by the way. If you are going to weigh in saying that I am wrong I hope that you will also point out what you think would be right.

Though Color charts can work for the mostly-behaved child, it is entirely ineffective for children who are extremely impulsive, oppositional, etc. What do you do for a child who gets on red at 9AM? What motivation does that child have to pull-it together? So many kids just can't go an entire day perfectly....and if teachers hesitate to assign colors for transgressions, then the system is moot. Of course, teachers do need tools to manage their ever-growing classrooms. I like 123Magic For Teachers....it's a much more effective system for the impulsive kids and is constantly giving kids a chance to start over.

Best system I have ever seen: the teacher has the children fill out thank-you tickets (just write their name on the ticket) when they do something good, or helpful, or something that she knows is hard for them. The filled-out tickets go into a big jar, and are pulled regularly for special privileges or fun duties (going first at something, for instance.) The first week of school she gives out the tickets very frequently; soon the kids are all vying to do the right thing and be noticed doing it.

This system is entirely positive, the children adore the teacher for the positivity, and everyone does their best. It reinforces the particular behaviors that each child is working to master. It works especially well for the impulsive kids who are used to negative reinforcement and resigned to being chewed out all the time. Brilliant.

DeeDee

Sounds like you are describing DD's first grade teacher. Is it any wonder that DD was successful in this classroom or that this teacher is universally respected and admired? Am I really so crazy for telling the team that they should use this amazing asset as a tool to train other teachers on a better system? Really???

Very good point! I once had a student like this in a class (2nd grader) and he just could not help the fact that he had severe ADHD and impulsivity issues. The saddest part is he has already labeled himself a bad kid and stupid, when in actuality it couldn't be further from the truth.

I just wanted to hop on here and thank the the OP and all that have replied and advised on this thread. My son has anxiety and is similar to your DD where those sticker chart type behavioral controls cause him great anxiety to the point where he completely detoriates and has OCD symptoms. I thought I was the only one with a kid like this!!! For example, his first year in public school (kindy) last year he had a paraprofessional (the kids broke into three groups each day to do reading and fine motor tasks with a paraprofessional leading each group) who triggered his anxiety so acutely he became completely unable to swallow his salivia. He has this fear of something "disgusting, bad or dangerous" going into his body. he usually keeps this fear under control but when he had to work with this parapriofessional (who shamed him, was completely inflexible, etc) he became so anxious he really had trouble swallowing. Then, in order to force him to work with the said assistant the school psych instituted some sort of sticker reward chart and he deteriorated completely! He couldn't swallow at all - his throat was sore from being unable to swallow and his lips were all chapped form him pushing the salvia out of his mouth on to his lips and then wiping the salivia away with his sleeve. His tops were soaked from his salvia! it was truly shocking He had to carry a couple of handkerchiefs to wipe away his salavia. it was awful. I eventually flipped out a bit on them and insisted they move him to a different group run by a different assistant and he recovered and had a great 2nd half of the year. Since then we got an anxiety diagnosis. we are planning to institue an IEP for next year (I just cannot have him go through that and deteriorate like that again). But all of this is very helpful background info for the upcoming IEP meeting. I *pretty* sure our district will work well with us - they are supposedly a very good district for special needs, accomodations, etc... but we'll see. And this is my first experience with any type of IEP so... Anyway, the info here is great. And it is comforting to knwo that other kids have this problem! I plan now to record our IEP meeting(s) as well. I am nervous b/c the psych running the show for meeting (I think) is the same psych who crafted and instituted the 'sticker reward chart' that really just destroyed my DS. I am hoping I don't have too much trouble with her! I have to admit, I have a bit of a bias aganst her and am wary of her and I really didn't like how she handled the situation with my son last year. But that was before they knew he had an anxiety disorder and before a diagnosis.

Understand you want the best for you daughter and did not want to hurt your feelings, just wanted to question if the teacher wanted to move up with your daughter or if you were trying to have her moved- it was not clear. If she wants to move, they should let her of course, but if not, she should not be pushed to.

With regards to the color chart, yes, there are other methods, but the teacher will need some sort of classroom management system in place. No one system works for every child and anything new would be trial and error. No one wants your daughter to have a bad year, but the teacher will also have to do what works best for the majority of the kids.

Apologize if my previous post was harsh- rereading it, yes, it sounds that way. I just am hoping that in asking the school to be flexible, you too will be- and understand that all the children need to be served and while hopefully you will get a lot of what you want, it is not realistic to expect everything.

Suggesting a para was not meant to be an insult, but rather a possible solution. Paras can do wonders for a child by working one to one with them, taking them for walks in the hallway to calm down etc.

So far today I spoke to new DSS to hear what principal is proposing, met with a special ed attorney and spoke to asst superintendent filling in for the real one who is on medical leave. Frankly I have to wonder if I am totally losing my mind. This really, truly cannot be happening...

So the principal is reassigning a 6th grade teacher to 2nd grade and wants to place DD in her classroom rather than with one of the returning 2nd grade teachers. So yes, she is in fact reassigning a teacher for DD - just refusing for it to be the one who has already proven to have a classroom style that works for DD and who has already gotten to know how to read DD's signs of anxiety. (And Amob whether or not the first grade teacher has asked to be reassigned is basically a moot point. She made clear that she is not expecting to return to 1st grade next year and had no idea as of the beginning of June "what they are going to do with me.") Principal told the new DSS that this teacher will be using a "responsive classroom" along with a color chart. I pushed and said that my understanding of the responsive classroom is that you utilize positive reinforcement and logical consequences. A color chart does not belong in the mix. In fact I read one article on a Responsive Classroom website that is entitled "Beware the Color Chart." At this point her wording changed to "a responsive type classroom".

She said her color chart would be a bee hive shape and would use a system called "Positive Bee-havior" where kids would get moved to the yellow and then red hives. So, it's a color chart. A cute shape, a cute name but still the same public shaming device we have been arguing about. She would also use the "rest stop" part of responsive classroom by sending the children to a chair as punishment. I asked if this would be a specific punishment chair or back to their own seat and she did not know. If it is actually a punishment seat this is even worse than the system at AIM that triggered the whole situation.

Since the principal is insisting on the color chart new DSS is back to pushing for systematic desensitization over the summer. What? Didn't we agree last week that it wasn't reasonable to try to put this together over the summer and we needed to do it in conjunction with a proper classroom placement - not instead of it?

She was supposedly going to contact the superintendent to have her deal with us directly since I told her that when I and our consultant tried we never got anywhere. Instead I just got a call - and the third degree - from asst superintendent. My story doesn't change, my request doesn't change. I am just trying to prevent a full blown school anxiety issue. Period. I am not asking for anything different than what we asked for last year and my reasons haven't changed. I am all for desensitizing her but in conjunction with an appropriate placement - not instead of one. Really - it's just that simple. If you wanted to be able to put her in a classroom without making this accommodation you should have prepared her for it. You had an entire year with the SW working with her weekly. You didn't even try it. You didn't even TRY. You also timed this to blindside us so we couldn't even TRY to work with the new teacher to come up with a mutually agreeable plan. Don't you get it???? AARRRGGG!!!!


Attorney sees this EXACTLY as I see it and says it is just plain silly. Why on earth would the principal be doing this over something as ridiculous as a color chart? Her ego and her anger at us for going over her head. She didn't say but I assume also embarrassment over the letter about her violating the IEP. Attorney said "everything with special ed comes down to either money or ego. In this case it is ego." She cannot understand why the district is allowing this principal to behave this way. She suggests going to the superintendent and asking directly "Can you really justify to the school board that you are paying $3k-$4k in legal fees rather than make a change that costs NOTHING?"

Please tell me if I am still the sane, rational person I have tried to be. This really just makes no sense...

Thanks MON. Your school's system sounds wonderful - exactly what DD would need. I have come to realize that most of this really comes back to the Principal's attitude. She is a former librarian and wants total silence and strict discipline. She uses terms without really understanding them and no one has really held her accountable for misrepresenting her programs. If she tells central office she is using a program called "positive" something they accept it at face value. If a parent complains they respond that the school is using a "positive" program. No one has ever really challenged her so fully before. So she is angry, her ego is bruised and she is looking for ways to retaliate. I have no choice though - if I don't push back the effect for DD will be disastrous. No - not just being dramatic. Her initial school experience at AIM was that bad...

So yesterday ended with a call from asst superintendent saying that the district is calling a meeting - where THEY will pay MY consultant - to meet with princpal and new DSS to see if they can come up with a plan for next year. As someone I told put it - they can't control their own principal so they are bringing in MY consultant to do it for them.

Yes, focus on a positive behavior system. If only they could understand this I think we would not have any of these issues. I mean really I can't even imagine how many hours have been spent by how many people on this already. And it really is that simple - paying attention to positive behaviors is a really good system. Why has this had to become such a battle?

Pemberley, I hope the district meeting goes well. You are doing a great job advocating for your DD-- hang in there!

DeeDee

Just off the phone with our consultant after his meeting with principal, new DSS and asst superintendent (appearing by phone). Apparently principal was "marginalized" and the higher ups are handling it. He tried to talk mostly to asst super since new DSS now seems to be siding with principal. She proposed starting the year off without a color chart and introducing one after 2 weeks. That was flatly refused - consultant told them that we will not agree to a color chart in the classroom. Period. He requested a year without it while the district provides appropriate supports so we can try to resolve some of these issues before the next year. Funny, I said the same thing, over and over again, and got rebuffed.

They are now demanding a psychiatric evaluation. They had offered to pay for one when things were at the worst but I was warned off by a neuropsych I checked with being told that few psychiatrists actually do clinical work and most would be brought in just to adjust medication. I was told bad things about the psychiatrist the district contracts with. (ALL online reviews of him gave only 1 out of 5 stars. I have never seen another practitioner with such consistently bad reviews.) Once I finally got the name of one that sounded ok my phone conversation with him consisted of him saying what medications he would start DD on - WITHOUT EVEN MEETING HER. We said no way.

I recently found a DPsy who I am comfortable with but she has not yet been approved by my insurance. No idea how long it will take for her approval to be processed. Consultant has a psychiatrist he is comfortable with who has declined to medicate in the past. District is now claiming that they "requested" this eval and we failed to cooperate. Funny, as I recall you offered by saying "no pressure - it's there if you want to do it."

So their position is that IF they agree to remove the color chart and provide support services they are sure that we will come back with additional requests later. Really? I have been telling the same story, making the same request and giving the same reason for a year now. I registered on this site last summer asking the same question. I have been interrogated by person after person from the district and have never changed my story. I submitted written requests almost 2 months ago. And they have the nerve to say that WE might change our story?

You all have been through this with me - the unilaterally not allowing her to wear a hat after agreeing at an IEP meeting, the nurse refusing to follow medication orders from our pediatrician, their violation of the IEP (including written acknowledgement from the district) and the blindside from the principal on the next to last day of school. It has been CRAZY - especially after starting out so well.

So the district has involved their attorney to review our request. I am supposed to decide about this psych eval. Any input from the parent/experts here? Right now DD is happy as a clam - loving every minute of the enrichment programs that she is doing over the summer. I told the consultant that I don't think an eval now would be appropriate - she would need to be evaluated once the school year is underway and she is being triggered (or not as the case may be.) Principal (consultant said "I am NOT impressed - I would never hire her...") thinks it should be done by September. We have a neuropsych scheduled for October already. Consultant proposed it be done by January.

At this point I just want DD in a classroom that will not freak her out but I don't want to agree or disagree to something just to make that happen. We have already decided that we will NOT cajole, insist or bribe her to be in school. If they trigger school avoidance then we will expect them to deal with it - not us. (I liken it to parents who spend a fortune providing outside tutoring only to have their child turned down for services because he is able to pass everything by the skin of his teeth. I would remove the tutoring so the school can accurately assess his performance. In this case it is our interventions that would be removed. If that makes sense...)

As always any and all input is welcome. All of this is because of the principal's ego - nothing more. The thing that gets me is that thousands upon thousands of classrooms are managed everyday with positive behavior systems - color charts and punitive actions are not essential to an elementary classroom, This principal is just wholly unqualified for the position and doesn't recognize that she is insisting on something that doesn't HAVE to be there. Jeesh... I really just can't believe it...

Yes--this is just totally ridiculous.

The main reason to have dealings with a psychiatrist is if you want meds. I am not in a position to judge whether you want meds; I know firsthand that for an anxious person an SSRI can be life-changing in a very positive way; but that is a personal decision. To me, it looks like skipping a step to arrive at meds without a thorough neuropsych workup first.

The neuropsych eval you have scheduled for October-- I assume it is a comprehensive workup?-- sounds much more appropriate to me. If they refer you to a PSYCHOLOGIST (not psychiatrist) to treat the anxiety through cognitive-behavioral means, I would absolutely go for that. (IMO talk therapy for children is far less impressive in its results.)


Why are they asking you specifically to see a psychiatrist as opposed to a psychologist? It is not part of their brief to insist that you medicate your DD. (Again, you will hear nothing against anxiety meds from me, but they are not supposed to pressure you or to recommend medications. They are not qualified to do that.)


That's not a position, that's grandstanding. Negotiating based on future hypotheticals. It sounds as though so far you haven't asked them for things that aren't in the IEP. I don't know why they would expect you to suddenly do otherwise.

Have you talked to the lawyer yet about next steps? What does the consultant say?


Is the new DSS or any of the superintendents acknowledging the prior IEP violation? You have that in writing, yes?

I think that is why I lean toward involving the lawyer; these folks are hedging, taking advantage, stalling, and evading their obligations.


Another good reason to have your own attorney involved.


If you can get on a cancellation list and do the neuropsych sooner, so you have a "summer/happy" baseline, that is not a terrible idea, as long as they are willing to see her again in the fall as a followup once school has upped the anxiety again. Otherwise, I think keep your October appointment, and you can let the district know that you feel that "we will all get sufficient information from that evaluation to make plans moving forward."


I think you are being reasonable. They are painting you as unreasonable; all the more reason to stay calm, use your experts, and stick resolutely to the key issues. You must be, beyond a shadow of a doubt, more reasonable than they are, yet also persistent.


Yes, a power struggle that became personal, with a principal who has not had sufficient training to understand what is mandated by law. Awful.

Your lawyer will advise you. If they come back at you with a color chart, I'd get the State Department of Ed on the phone ASAP as well as file a written complaint with them. And whatever else the lawyer recommends.

Your DD is entitled to a public education that meets her needs!

Hang in there.

DeeDee

Thanks dg, DeeDee and mon. To be clear I am not opposed to medication if it is needed - I am just really, REALLY uncomfortable with the idea that someone would be talking about medicating a 7 year old without even meeting her. She is not psychotic, she does not hear voices, she is not a behavior problem - she is a happy, cheerful, outgoing little girl who reacts to stimuli that remind her of a really terrible school situation. The kid I am living with now is the same one I had before she ever stepped foot in that AIM. The same kid we had for the first few months at the public before the substitute yelled and threatened and reminded her of AIM. When she does get triggered she responds by withdrawing, getting quiet and developing physical symptoms. I have been told in no uncertain terms that if she threw chairs and broke windows the school would be more than willing to provide the kind of environment needed to make her comfortable. She only got pushed to "meltdown level' a couple of times last year. Each one in response to AIM stimuli, and one leading to the IEP violation letter.

We have not yet hired the attorney - the idea was to try to get the year started relatively amicably and move to legal action only if needed. The assumption was that the superintendent would never be able to justify to the board of education spending the money to go to mediation over a color chart when the alternative is free. I assume the district is cueing up in case we pull the trigger on due process. We were going to wait to actually hire the lawyer until we saw what they do or do not agree to do with the classroom placement.

Yes we are on a cancellation list for the neuropsych but not holding out much hope. THAT one I would like to do during the summer - much more likely to get an accurate read on her when her anxiety isn't already triggered. It's a psych eval during the summer that concerns me. My current thought - and PLEASE weigh in - is to tell them that we will not submit to a psychiatric evaluation unless/until recommended by the DPsy I am comfortable with or the neuropsych. While I would love to have DD start with the DPsy now we have already spent many, many thousands of dollars on all of this - spending more on her services before insurance approves her is hard to justify. We will wait until she is approved unless the district wants to pay for her to start during the summer. If she recommends a psychiatrist no problem - we'll go. And we'll submit it through our insurance so there is no added cost to the district. If neither DPsy nor neuropsych think psychiatrist is needed then we won't put DD through it. Does this sound reasonable?

Yes Dee Dee, the IEP violation is in writing from former DSS. I think my plan to not insist, force, bribe, cajole her to be in school if she feels unsafe is probably what you are talking about MON. I will make a concerted effort to let the folk at school handle what happens in school. I was forced to be involved last year (i.e. when I saw they were doing NO differentiation) but will try my best to resist this year. For example if the homework they send home is not appropriate, or DD is reluctant - I will not force the issue. They will need to find the level, presentation style, amount, etc that works with her LD's. They have already made sure we know that enrichment is on us. They can do the rest.

Yep...pyschiatrists most often see patients in need of medications and medical management of their mental health. I have worked with some amazing child Psychs....but they are few and far between. However, their M.D. carries the most clout diagnostically. If a well-respected psych concludes that your DD's struggles are due to an impairing medical condition requiring specific intervention in her school envionment, schools listen. The trick is finding the gem among dozens and dozens of duds.

I would be uncomfortable with that too. And, indeed, uncomfortable pursuing meds without confidence in the judgment and training of the prescriber generally. (We have a specialist developmental pediatrician who prescribes for DS; she knows what she is doing, and knows him very well.)


How often are the triggers? Is she cheery between times?

Is the "no color chart" specified in the IEP? Sounds like maybe not?


That sounds reasonable.


Yep. You don't ever have to see the practitioner they wanted; they cannot force you to, and they should not try to pressure you on the choice of practitioners for your DD. This is a health care matter (with privacy rights) as well as a school management issue.


I believe that MON's and my experiences differ both in how far we are willing to go in adversarial situations, and in outcomes. I read MON as saying, don't fight unless you decide it's worth it to your DD to put in the effort there. MON is right that all this adversarial garbage does actually take time away from nurturing the actual kid to some extent. (MON, I hope you feel I am representing your position appropriately.)

On the other hand-- my feeling is that if you can set up a situation that will genuinely work for her, it's worth some trouble to you in the short term. It will also in the process educate school staff about her needs. Our experience was that we had to bring really significant resources to bear (time, money, ugh) to get DS properly served, but then once his needs were understood the principal came around and really met those needs with appropriate supports and placements; DS has thrived for the past two years. By being firm and reasonable, we left room for them to come around and work with us, and it is a very cordial and respectful relationship now.

I am not sure what will happen with your rogue principal in this vein, but if some other school staff were to help you, including the classroom teacher and the DSS, you would need less from the prinicipal; if s/he doesn't want to be bothered, your DD's success will reduce her load, not add to it.

I'm sorry that it is so awful for you at the moment. One way or another, you will fix it.

DeeDee

Thanks. It's hard to imagine where I would be if I didn't have you all to think this through with. Sorry so long but writing this out helps to clarify my thinking and also gives you the opportunity to help with any advice, expertise, experience you may have. Thanks in advance.

It has really, truly become an unreasonable situation since the former DSS left. You are right that just because this has become personal for the principal I don't have to respond in kind. I DO have to make sure that I remain as reasonable as humanly possible. I am not interested in fighting with the district - I am interested in getting my child an education. To do this we need to ensure not only her LD issues are being addressed (and I believe that they are) but also that her anxiety is not triggered to the point that she develops full blown school refusal. If she cannot enter or remain in her classroom for a full day, day in and day out, she by definition - I believe anyway - is not being provided the opportunity to access her free and appropriate public education. It really is that simple.

So after the meeting the other day and all the debate over whether or not we submit her for a psychiatric consult it appears to be a moot point. The district came back and said their lawyer wants us to agree to mediation with a mediator provided by the dept of education. We said "Only if you plan to pay our legal fees." We had already come to the realization that mediation would be fruitless - there is barely any chance of coming to any sort of meaningful conclusion and the $3k-$4k it would cost in legal fees is better spent paying for the psychotherapist until our insurance approves her or being put towards legal fees later if we get to due process. Our consultant reiterated 'This is all about a color chart - a color chart!" The new DSS said that she thought "it's about a lot more than that" - apparently our dissatisfaction with the entire school situation. Consultant tried to explain that no, it is really just about providing a classroom that will not instantly trigger her anxiety. Somehow this message is not getting through to them. Ever since the former DSS - who is trained as a school psychologist and was the ONLY person from the district who seemed to understand the anxiety issues at play - moved on we are left discussing this with people who have absolutely no clue. The lack of training and oversight is really, really scary.

So we have decided to focus ONLY on how we are going to get DD through the crisis we see looming before her. We will start with the psychotherapist next week even if insurance is not approved. We will discuss with her how to tell DD that yes, she will be in a classroom with a color chart. I am leaning towards asking the therapist to tell her. This way I don't have to be the bad guy, it reduces their ability to claim that we somehow intentionally triggered her by catastrophizing (sp? spell check isn't recognizing my word - sorry) the situation and it gives her the ability to document in a clinical way how she responds. Right now she is truly a happy, cheerful, confident, outgoing little girl. We are trying to enjoy it while it lasts and think it will be meaningful for the therapist to see her like this while school is not in session.

We will also come up with a plan with our pediatrician about how to handle the anxiety once it is triggered. From my reading I am now understanding that we technically already had a school refusal situation last year. Not only did she ask most days not to go but for months she spent some or most of just about everyday in the nurses office. I was called to pick her up early more than 30 times in the last few months of school. I eventually started offering "rewards" for staying in her classroom all day. Luckily it worked - she still had headaches most days but refused to go to the nurse. Instead she would tell the teacher "I feel awful but I'm toughing it out."

My rule was she HAD to go to school unless she had a fever. There were weeks at a time that she insisted on taking her temperature every morning before heading to the school bus. (Luckily I had thought to back off the first rule - you have to go unless you have a fever or are throwing up. THAT could have been ugly...) At the worst of it our pediatrician wanted us to pull her out of school - suggesting home schooling or home bound tutoring. We decided against it feeling that we didn't want to establish a precedent of her not having to go to school since we had a really good teacher and classroom for her. That is going to be different this year. After the last IEP meeting pediatrician and I discussed it and she said "If they are intentionally antagonizing her anxiety then no, she cannot be there." I am leaning towards setting up something in advance like - 3 days in one week where she is at the nurses office more than twice, we are contacted to pick her up early or she refuses to go we trigger the home bound tutoring. We will also need to ensure that the classroom teacher records EVERY TIME she says she doesn't feel well, asks to go to the nurse or otherwise appears anxious. I am convinced that they will handle this situation by instructing the teacher NOT to send her to the nurse unless she is vomiting and instruct the nurse not to call us unless she has a fever or otherwise appears to be contagious. I believe that this will likely trigger absolute refusal and probably make the situation even worse...

So, as MoN pointed out I am focusing on my daughter - only my daughter. I did not enter this looking for a fight and I will not be dragged into one because of the principal's ego or the district being in chaos since losing the one person who fully understood the situation. I will not give up her rights to a free and appropriate public education. Nor will I send her into an intentionally antagonizing situation. If it gets to the point of needing home bound tutoring we will rely on the expertise of this therapist with experience is school phobia to formulate a plan. If necessary we will indeed go to due process to seek an out of district placement but we will do it only once we have been assured by legal council that we have dotted every "i" and crossed every "t" so that we can be successful. THEY are the ones that have the federal mandate to educate her. Personally I think it would be easier, cheaper and better for DD if they provided an appropriate classroom in her local public school but hey, what do I know, I'm only her mother...

Agree w/ what MON said.

Pemberley, you're doing a tremendous job. I hope you can get your DD an excellent situation for this school year.

DeeDee

Not sure if this is progress but at least we have a bit of movement. The district has backed off the mediation request. Interestingly new DSS told consultant today she "feels terrible" about this, neither she nor the district have done enough to find a solution and she realizes that she hasn't even provided a proposed plan in writing that we can respond too. Maybe this means their attorney if no one else has pointed out that they are not handling this well...

I have a question - we received an IEP in the mail. Obviously we do not agree with their proposed placement or think the anxiety related goals are appropriate given the blindside about the placement that was delivered after that part was discussed. Apparently there are different interpretations regarding how the 5 day rule is applied in the summer. We don't want to inadvertently appear to consent to the IEP by not responding or respond In a way that comes back to bite us later. What do you think of saying "We received the IEP draft. Since the meeting ended abruptly and we did not have the opportunity to discuss all outstanding issues we can not accept this draft as final. We therefore request another meeting to be held prior to the start school in order to develop a complete IEP."

While typing got a call from therapist. Insurance is a no-go. Apparently they are not accepting new clinicians at this time. This could be A LOT of money but I guess we don't really have a choice. Consultant is hoping district will cover the cost but who knows anymore...

That seems like a likely scenario.


Is this an IEP draft, a proposed IEP, or a copy of one that you signed last year? If your signature is not on it, it's not finished.


What does Consultant say? My feeling is that requesting a meeting would be appropriate. You need to iron out language specifying exactly what accommodations are needed (including the color chart) and get agreement from all parties about that, in writing. The IEP is the appropriate vehicle for that sort of thing.


Rats. I would not hold out hope for district to pay for this kind of service.

However, clinician may be so good you are willing to work with him/her for six months or so, get the mileage you need, and then stop. Or s/he may be able to immediately recommend the right person to see who is covered by insurance. You are not locked in, you are just making forward steps on a path to help.

DeeDee

Update: We met today with the psychotherapist and she indeed seems like a perfect fit. She really seemed to understand DD just from our description - even before meeting her. I think we may have actually found the resource we need to guide us through this mess. We will have DD evaluated in August - hopefully in time for psych to write a letter about classroom placement. Frankly, I doubt it will matter. If we can't convince them before that they will almost definitely say it is too late to rearrange things. At least we will have this psych on our side working with DD to help so things are looking up. AND she got word that insurance reconsidered - since she is fluent in Spanish they approved her after all! Not sure when it will kick in but we are finally feeling better.

I sent an email about the IEP being incomplete but did not actually request another meeting. (The idea of sitting in a room with this principal makes me feel physically ill. I just can't get myself to ask for it...) In our state we don't have to sign off for an IEP to be implemented - if we don't object in writing within 5 days we are presumed to have consented to it as written. No word from the district since the "I feel awful" phone call to our consultant. No response to email about the IEP.

Good news on forward progress! And the therapist will be able to see your dd before school starts so she'll see the "real" child.

I wish I could offer ideas about the school situation, but all I can say is I admire your ability to stay with this stressful issue.

Here's a link to another board where you can find more support for the LD/IEP journey.

http://millermom.proboards.com/index.cgi

That's terrific! I'm so glad you'll have her on your team. Once she knows your DD, she may turn out to be a great advocate for DD with the school, too. We do bring our professionals to school meetings, and it's very effective.


I don't blame you. The silence could be them working things out with their lawyer... or fighting among themselves... who knows.


I think the main job I see at this moment is to make sure that your email definitely counts as "objecting," so that the IEP does not go into effect as they wrote it. Check with your consultant. Do re-read the IEP and make note of what's missing, and talk with the consultant about how and whether to "object" (and to what) at this stage. You do want to pick your battles, but you seem to be at a critical moment.

Yes, it's nauseating all right, but I think you are doing what has to be done. Keep holding your nose, and keep doing what appears essential...

DeeDee

Hope I made the right decision - the neuropsych called this morning with a cancellation in mid-August. I was torn between having him see "happy summer DD" where I think he can get the best read on her abilities and "anxiety school DD" where he can see the effect of the school induced anxiety. Since we already did one during the last school year that was deemed invalid I decided to go ahead with the August date. I don't know if it will give us any information in time for the first day of school/classroom placement battle but hopefully between the neuropsych and the psych we will be in a position to make good, informed decisions moving forward.

Looks like next IEP meeting will be once school is underway with whatever classroom placement decision they make already in force. Still no information on what they are planning to do - apparently their lawyer doesn't want them to tell us. My consultant said this morning that it has gotten to the point where he is "embarrassed for them - no one knows what they are doing." He said when he was an asst superintendent "this would have been a five minute fix - it's that simple."

You know - I get that my DD's learning profile is extremely unusual - some have suggested even unique. This means that there are going to be bumps along the way. I get that. It is going to be a tough road. Why on earth would they be trying to make it even more difficult? There truly is no upside for them and a whole lot of potential risk. The best possibility they have is if their placement doesn't actually trigger her then great - we go on with a regular public school education with a whole lot of pull out services provided. That's what we would have if we got the classroom placement we are requesting, too. If it does trigger her then they still have to provide her an education - right? It just becomes a whole lot more complicated to achieve and probably a lot more expensive. I don't see where they are in a position to gain anything from this unless of course we unilaterally place her OOD and they prevail at due process. But we wanted to do that last year and they talked us out of it. THEY were the ones who explained FAPE to US.

*scratching my head*

I just don't get it...

Yes, and you are building your team of professional allies who know and can advocate for your DD. I'd have taken the appointment too. You can always follow up for re-examination under stress conditions.


That makes *no* sense. Why would they want to leave you in the dark about their plans? (Unless they are planning to surprise you in a non-good way?)


Does the consultant have any advice on how to fix the situation at this point, or do you have to just sit tight and let the whole thing unfold? Can you at this point object to the IEP/placement plan (without even knowing what the placement plan is?!)?

Once again, it seems as though the IEP has not given you the standing it should to solve problems collaboratively with the school; they are NOT treating you as part of your DD's team. They are supposed to be working WITH you to determine a plan for your DD. You are legally a part of the IEP team.

I don't have enough technical knowledge to know what you should do... but I sure hope it will work out splendidly somehow, even though these folks are botching it terribly.


Me neither.

DeeDee

FWIW I agree with everything DeeDee wrote - so I won't restate any of it I also think it's a good thing to have the neurospych look now while your dd isn't stressed, and if problems arise during the school year, you can always ask for another visit with the neuropsych under those conditions - that way you have a set of data to compare, plus by meeting with the neuropsych before school starts you'll have a private professional who is familiar with your dd that you can ask questions of if problems come up during the school year.


Didn't you have a slightly different set of school team this time last year? Different principal maybe? Or different SPED director?

Let us know how the neuropsych appointment goes!

polarbear

Thanks. After no action for weeks we finally got some news shortly after I posted. New DSS called consultant to say that they are scheduling an IEP meeting the week before school starts. We know principal will be there (oh yippee!) and DD's excellent special ed teacher. We have no idea who else will be available. They still won't tell us what they plan but have said the purpose of the meeting is to finalize everything we didn't get through and figure out what is going to happen on the first day of school. I asked consultant if this means that suddenly classroom placement is being treated as a team decision rather than unilateral principal prerogative. He seems to think that yes, that is the case.

To say we don't trust these people farther that we can throw them is an understatement. Perhaps our rejecting the IEP, arranging the psych eval and moving up the neuropsych while they have done *nothing* is making them a bit nervous. Who knows. Now I have to steal myself for attending this meeting with this principal in attendance. Consultant says that new DSS is "on our side" but basically has her hands tied. Who knows...

Yes polarbear we had a different team last year. Since DD was in an out of district placement everything was handled by central office. Our IEP team was made up of the district's director of special ed and head school psychologist. DSS - who later became such an ally before he left the district - sat in for a bit too. These were the people who forced principal's hand and got her to place DD in the good classroom last year.

We are leaving on a 2 week vacation and just want to enjoy happy summer DD while we can. Almost as soon as we get back we will start the psych eval process and do the neuropsych. I assume that will be the beginning of the end for happy summer DD...

I will, of course, keep you posted!

I would way rather do it this way than go in cold on day one, and it's surely better for your DD. This is good news.


EXCELLENT.


Don't think too much about what's going on inside their heads. Assume for the sake of argument that it is changeable, even though that has not always been revealed in the past. We have seen people who looked like enemies in these meetings turn out to become allies once pressure from above or aside was removed.

You need not trust them in order to sit in a room and have a conversation with them. Put on your imaginary armor if you need it (but they are not going to be carrying swords anyhow). You will need to be firm in your purpose, but not antagonistic; this attitude is almost impossible to maintain, but use all the Zen at your disposal. Remember, YOU are the reasonable one in this relationship, and that has to remain on display.

Keep a written list in front of you of "the things we need" and "the things we want" so you don't forget to address anything, but have them prioritized and know what you'd give up in order to get the core stuff.

If you can bring Awesome New Psych to the meeting, do.


You never know. We almost pulled DS out of school, the end of 2nd grade was literally so abusive. But 3rd grade was a huge healing year. If they are willing to set that up so that it happens, it is possible.

Hang in there,
DeeDee

The best system that I have seen was one where they had to "walk their dog." If the dog walked, it was a warning, a second walk they lost five minutes of playtime. We have been in school systems with the color, and pulling crayons and I can stay they were not great systems. The teacher who had the walk the dog used a "snoopy," and the kids loved it. She also had "G..(her name) bucks." If the child did not have to walk the dog they earned 2 G Bucks. At the end of the week, they spent them in her G store, where they purchased little prizes. It was a great system and fun. She had 27 kids and no behavior issues. My HG DS never responded well to the crayon system.

OMG - we *may* actually be making some progress...

I just got a call from new DSS. While we were away on vacation our consultant kept working on our behalf and has become convinced that new DSS is committed to trying to create a situation that will work for DD. I of course remained skeptical but after our conversation I am now a bit more optimistic.

She assured me there will be no color chart in DD's classroom "on Day 1". The principal's big concession in the process had been to allow for *2 weeks* without a color chart before she insisted on adding one so I made clear to new DSS that we would NEVER agree to DD being placed in a classroom that was designed to intentionally trigger her anxiety. I referred to it as "creating a hostile environment". When I pressed her on this she seemed to imply that no they would NOT be trying to add a color chart. I'm not sure I believe it but at least we know DD will be able to start the year this way. New DSS said that they will have to figure out how the teacher will manage the classroom instead. I gave her my mini lecture about thousands upon thousands of classrooms being effectively managed without color charts, how it is a discredited system and that all the better districts in the state have moved to positive behavior management systems like responsive classroom, PBIS etc. She said that she doesn't think she is in a position to convince the district of the need to change their philosophy about classroom management but I think at least it is now on the radar.

We had a long conversation about how this principal has single handedly turned this incredibly cooperative relationship into an intensely antagonistic, hostile one. I reviewed the pattern of her behavior - from the hat incident in February (discussed on another thread), to the IEP violation in March, to her being marginalized by the previous DSS and that her first act when he announced his departure was insisting that DD's classroom placement would include her biggest anxiety trigger.

I told her that we refrained from filing a complaint with the Dept of Education over the IEP violation because the former DSS intervened and effectively marginalized the principal. If the district is unable or unwilling to keep the principal marginalized now that former DSS is gone we will have no choice but to pursue complaints if the principal continues to antagonize DD. I said that I can not believe it is in the district's best interest to have a situation where they are constantly having to respond to complaints. She agreed but also said that she doesn't know if she is in a position to contain the principal herself. She would bring in the new director of pupil personnel services and asst superintendent if needed, though. I *think* she understands that this will be essential and that we have no choice but to do whatever we have to in order to protect DD if this principal continues to target her.

New DSS is absolutely crazy about the psych that we found. She wanted to know how we found someone so amazing. I explained that she is dealing with parents who do our research - we have a history of identifying issues long before the "experts" pick up on them and if we say that we have found the right professional you can take it to the bank. She was quiet but I assume was understanding that what I am reporting about the principal's behavior (and how she has managed to manipulate various people at central office about these various events) has more credibility than she would have liked to believe.

So like I said we *may* actually have made some progress. At least I know DD can go to school the first day without a color chart immediately triggering her anxiety. Also the principal's outrageous conduct should at least be on the district's radar. New DSS said during our conversation that the principal "made a decision that completely contradicted everything that had been agreed to previously" so I think she gets it. At least I hope she does...

Next week DD starts with the psych and has her neuropsych eval. I have been cherishing every moment with "happy summer DD" and am hoping against hope that we can keep her around once all the evaluations start. Even better if we can keep her around once school starts. It's hard to imagine that happening but I am holding onto my hope...

Will keep you posted.

Sounds hopeful! Keep giving the updates I am very interested and following along!

Neuropsych eval today. Verbal IQ even higher than original testing. 99.9+ th but don't have the actual number yet. Confirmed weakness in working memory and processing speed but they didn't test as low as original test. He gave her NVLD, ADHD-Inattentive and anxiety. District has asked hIm to come (at their expense) to explain findings. Our new psych also plans to come. All seem to agree now that prIncipal's plan was totally inappropriate. I am starting to feel better. Work on color chart should be done in therapeutic setting not forced on her in a classroom. Hoping she can have a good year afterall.

That is wonderful news!

Go Pemberley Go! You are doing a great job of bringing together the dream team of advocates, next to whom the principal is starting to look small and silly. Their advice is going to be a lodestar for you. Well done.

DeeDee

Good job! You've hung in a situation that looked hopeless at times and now the ducks are in a row. Let's hope it works out without any more road blocks and that your dd thrives this year. If nothing else, you have them on their toes and you've brought in reinforcements so you are stronger than a parent now. You are a parent with clout. Way to go.
Keep it up. And then look for opportunities to relax and trust in what is trustworthy in the school as you all begin to heal from this while keeping on top of it.

I feel odd saying "congratulations" on clear diagnosis of a disability. But my goodness it's a wonderful thing to turn confusion and chaos into something that makes sense and gives you a path forward.

Your advocacy is inspiring. You should consider printing these threads and keeping them. When your daughter is a mother she might find them interesting.

Thanks for all the words of support and encouragement. Yes mon this situation did indeed appear hopeless at times. I can't even tell you how many hours of sleep I lost or how many tears I shed this summer. It is such a helpless feeling to see your child being placed in a bad situation and have logic and common sense fall on deaf ears!

I really can't thank everyone here enough. At most times in this process I have been the most well informed person in the conversation and have rarely been taken by surprise. This is because of the generosity of the people on this board. It has truly been a life saver hearing your reasoned voices of experience. I can only hope that by documenting my journey I am in some way helping another parent. Paying it forward...

Paying it forward is definitely how this gets done for our kids. It's how I learned, and why I am here.

Pemberley, you went from zero to expert on this stuff in very little time. You are extremely impressive.

DeeDee