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