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

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