Gifted Issues Discussion homepage Forums Twice Exceptional IEP Question

Okay so we finally got a draft of what I guess is the IEP report for my DS7 (1st grade). The IEP is for congenital hypotonia, vision disorder (intermittent convergent strasbismus) and anxiety nos. What are my rights with this? He gets an IEP (Yay!) for the vision, hypotonia and anxiety. I love and agree with almost all of the recommendations that the report provides (she basically just lifted all of those I provided to her and put them in the report and "recommended" them). However, I do not agree with one of her recommendations. The school psych recommends that a, "behavior specialist be included in (DS)'s team to assist in determining if suggested strategies and specifically designed instruction are sufficient at the time his IEP is developed or if a functional behavior assessment should be initiated." I do not agree to this. Ds' "behaviors" are not due to ADHD, ODD, PDD NOS, or any other suspect disorder or spectrum disorders. His behaviors (past behaviors, actually - he's been doing incredibly well with his new teacher and now with everyone aware of and accomodating for his vision and hypotonia) are/were do to his having a suoerior intelligence stuck inside a body that can't see or write properly and no one knowing why he was so frustrated, stressed and anxious about it. Example (cited in report), he had to do an exercise on the computer he sat there trying to do it but couldn't (now I know that he could not find the right keys on the key board b/c he has hard time seeing thinngs like letters on a keyboard due to his vision), other students were finishing and leaving and he was still sitting there. He was encouraged to keep trying and he said "I hate this stupid thing! I am not doing it again!" Well, I can clearly see why he was upset. He couldn't see the keyboard properly. He didn't want to say that he couldn't see the letters properly (that's if he even realized he wasn't seeing right). He sat there feeling stupid and not understanding why other children who he thought he was at least as smart as, if not smarter, were doing the exercise sans help quickly and he couldn't find the letters. He was getting afraid that people would think he didn't know his alphabet and think him "stupid." (This is a huge fear of his) . His teacher and TAs had no idea he could not see the letters properly either. This seems like a "behavior" (ODD or whatever - school cited it as an example of his "defiance") but it's the result of his hidden disability, albeit unknown at the time.

Anyway, "behaviors" shouldn't even be nearly as much of an issue now that we know his physical issues are and from where the anxiety comes and he has been doing great since school has started.

But anyway, I will not agree to this recommnedation. What do I do about it?

Also is there anything that should be included about him being twice exceptional? There really is nothing that address his gifts in my opinion. Any suggestions in that regard for me?

Talk to the school. My son's IEP was not put into place until I signed it. And yes, I think it should be mentioned that he is 2e, because that changes so many things...

Thanks CCN! Any recommendations as to what to include about 2e? I am really really new to all of this....

Have you had the IEP team meeting and gone through the full IEP together, or is this just a draft copy prior to the meeting? Or... is this the "final" IEP and there wasn't ever a meeting? What I would do depends on the answer...

If it's just a draft prior to a team meeting where you will (together as a team) review the IEP and edit/update/change on as agreed by the team, then all I would do now is prepare a rational list of the reasons you believe that adding in a behavioral specialist isn't necessary at this point in time. Try to take the emotion out of it, just list the facts - previous issues in the classroom were likely due to an undiagnosed vision challenge. You could consider offering to revisit the issue in 6 months if behaviors in the classroom continue to be a problem after the IEP is in place.

If it's a "final" copy and you've already had the team meeting, you don't have to sign it, or you could sign it and disagree - there is a place on our school district IEPs forms for parents' comments, and that is where we put any disagreements or additional information we feel should be included with the IEP.

If the school staff insists that it must be included, then you need to know exactly what happens next in the IEP process in your school district if you don't sign in order to make your decision to sign or not sign. I'd suggest at this point, if you have access to an advocate that you can ask this question to (a local parent advocate) I'd do that right away before doing anything else.

Good luck!

polarbear

ps - did the school mention the example you cited above (the ODD suggestion) at a team meeting or did a teacher mention it in a private conversation? I think that might be something I'd personally send back to the school in the form of an email - restate what was stated (at whatever meeting or conversation it was stated in), outline why you believe it is due to vision challenge rather than a behavioral issue, and send it to whoever was present when it was said. I've found in working with our school that when I did this type of documenting, issues like this sometimes disappeared and the school staff was much more willing to agree to my point of view

pps - I'm sorry I can't help with the gifted part - gifted IEPs (not really IEPs but more of a "plan" and IEPs are separate in our school district. The only place in which any "2e" shows up in our ds' IEP are the places where his ability and achievement scores are reported.

In my experience they'll only formally recognize what's shown up on test results from established pros, so I'd bring in whatever you have (if you haven't already).

You either ask for a modification of this section:

"behavior specialist be included in (DS)'s team to assist in determining if suggested strategies and specifically designed instruction are sufficient at the time his IEP is developed or if a functional behavior assessment should be initiated."

...to include mention of 2e, or have somewhere prior something that mentions that your DS has been identified being 2e and is therefor subject to frustrations and anxiety from the limitations that his vision challenges place on his intellect.

(or something like that)

I'd be really "team-oriented" though, because you want to keep the lines of communication open. It sounds like they're trying to accommodate him, which is good. You can express your fears that a functional behavior assessment could result in a misdiagnosis because of the 2e, and see what they say.

Good luck

It is just a draft copy prior to the meeting.

Okay very good advice! Thank you.

I really, really do not like the school psych that did the report (I am very pleasantly surprised that there wasn;t more in there that I would disgree with). But we have never "quarrled" or anything I don't think she knows I don't like but I do not. Good news is she should not be involved much after this as DS will not at her school anymore - he will be in a different school in the district and I really like the new psych so far much better than she and the new one has much more understanding and compassion for DS. Apprently, though this psych is the one to call the shots and run the show with this IEP report b/c she was in charge all last year upon which the assessments are based and from the IEP results.

I like this. This is what I need to hear. I am so not good with phrasing this sort of stuff - ie, phrasing it without pissing them off but still getting what I want and my point across, nicely but firmly - YKWIM?

I just added a few little notes at the bottom of my previous post, in case you didn't see them since we were cross-posting

Re the team meeting, the school psych probably doesn't really run the meeting - most often the school psychs are just involved to determine eligibility and make initial recommendations (which you've seen). The actual IEP shouldn't be put together until the team meeting, and our school psych never even showed up for a team meeting after the eligibility meeting was past history. I also wasn't terribly fond of our school psych - in the eligibility meeting he kept saying things like "well it COULD be a learning disability or it COULD be ADHD or it COULD be he is from Mars... you get the picture. He even listed all of that in his eligibility report, even though he'd done no evaluation for any of it (ADHD, Mars etc). I think there's a good chance your team will agree to no behavior specialist if you just make your argument in a straightforward manner - any kind of specialist is going to cost $ and take teacher time. Remember that there will be quite a few people at the meeting other than the psych - your ds' teacher should be there, and a school district rep (or at least they come to our meetings), and you can take your dh with you so there are two parents there. Everyone has to agree for the IEP to take effect. If you get stuck on a point and can't agree, you can always say "We're not ready to sign today. We are going to take this draft home and think about it." That was our advocate's advice to us when we were headed into a sticky situation once. Fortunately we didn't get that far - I'll be honest, I had decided for our ds ahead of time there was a limit to how far we would go in disagreeing simply because I felt there was a point at which it became counterproductive and took up too much of my time and energy that was better spent helping ds

Good luck!

polarbear

I actually kind-of did this. When I sent in his last report from the vision doctor which contained several tests DS did, observations of DS and it explained in detail the obstacles facing DS due to the vision problems, how it affects DS and what he needs. I went on to say the following:

"It was very disheartening to hear the psychologists attribute it to various behavioral/psychological issues (that he is "so rigid he just can't see others' perspectives" - so not DS at all!), anxiety and to hear and read in various reports people 'hinting' that he is on the spectrum or has ODD or ADHD - when I KNOW what "on the spectrum" looks like and I know he is not (anyone who takes some time to get to know DS can see that he is not on the spectrum.") And I KNOW what ADHD looks like and I also know that is not DS. I said to the the various psychologists involved in this that when I observed him taking the test it seemed really obvious to me that he has a learning disability or some sort of vision problem and they sort-of treated me like I was crazy. And here we are. I am so glad I valued my observations and suspicions over that of the "professionals" with the "checklists" and pushed the vision and learning disability testing. I am not glad that he has these vision disorders (on the contrary, I am heartbroken) but I am glad I am finally getting accurate labels and diagnoses rather than him being labeled with (and possibly medicated for) various disorders that he does not have. It frightens me how easily that could have happened and would have happened, if I were not the way I am (as annoying as "the way I am" may be). "

I know. I kind-of went off. But this was all so heartbreaking and just very frightening. Someone had to say it and I don't care what people think of me so I said it. Plus I am the ONLY Ds has got on his side. The "psychologists" I am referring to include her and she knows it. I think that is why the report is so much more favorable than I expected.

Question: does your DS's IEP have a gifted tag? We know that straight gifted and 2e don't present the same or require exactly the same intervention, but from a funding perspective it could make a difference. Where we are a child gets ministry tagging for different pieces that are fund-able. For example, gifted is one tag and Autism is another ...so a child with Aspergers may be tagged with both. So... if he's tagged for visual impairment but not giftedness, there might not be the same funding.

Also it's ok if you don't like the psychologist... because it's really the teacher that matters They're the ones that make the IEP happen as well as create the school environment (nurturing OR toxic) for the child.

BY the way, DS' regular, daily kindergarten teacher was wonderful and "would not endorse any" behavioral disorders (psych's words/complaint). He loved DS and knew he was struggling and thought he was gifted but was at loss as to why Ds was so stressed and anxious (at the time). All of DS' "specials teachers" that is - art, library, music teacher said really nice things about DS commenting on his creativity and intelligence (quoted in the IEP, which was so nice to read). The main problem last year was an "assistant" a reading assistant who was awful to DS. She was so rigid and hard on my DS (shamed him publicly a few times) that he deteriorated completely... And when I say deteriorated, I mean it, I never saw him fall apart so badly it was so disturbing and upsetting. He was so anxious he couldn't swallow. Literally couldn't swallow (causing all kinds physical problems even). I literally had to ptich a complete fit with teacher and school to get DS out of the the assistant's daily group. Once he was out of her group and away form her he recovered really well and by the end of the year he was "normal" again. Teacher apologized to me for letting the assistant problem go on for so long at the risk of DS. But I truly feel psych felt like DS should have just been able to "obey" the assistant. She doens;t believe the assistnat was at fault at all - she thinks DS is the problem. I think DS' hiddent disabilities and giftedness paired with an awful assistant caused DS breakdown but of course schools never see any "problems" on their side.

Incidently (or not) The school psych included a completed BASC-2 form from this "para-professional" in its entirety in the IEP draft report. I filled out a BASC2 as did DS's regular kindy teacher. Neither of my BASC form, nor teacher's, indicated very significant risks and neither was included in the IEP report. Just the paraprofessional's which is AWFUL and gives him high risk scores for every disorder that the form tests for. I kid you not. Why did she include that? I believe she is using it to make the case that DS needs a behavioral specialist.

Of course they don't... sigh. I'm sorry that happened.

I'm grateful you've shared this as well... I'm training to be a teaching assistant as we speak (I have a class tomorrow ). I'm impressed so far, actually, about how much the instructors have been emphasizing how important compassion is.

Maybe your son's assistant was too focused on achievement. I wonder if that was just her personality or if she was under pressure to produce results? (I think I may err the other way...in my application I stressed that I feel I can contribute by making kids feel welcome and safe in school... and they still accepted me into the program, ha ha)

Anyway it's good to hear that your DS has a good teacher. That can make all the difference.

Hmmm, no it does not. It does refernce his superior intelligence twice and does include his WISC IV scores. I will put this as an issue to discuss at the IEP, then?

Good to know. I really like his current teacher so far.

Same here. I think they want all the "statistically significant" info they can get, so they just include abnormal results. My DS has many "at risk" areas on his psych ed assessment that are just not applicable. Honestly I'm more relaxed about this now, though, because I've seen them support my DS and he's happy. It seems less now like a witch hunt and more like simply overzealous record keeping.

You could ask about it. I'm in BC, Canada so it might work differently here. I'd ask though - never hurts. At least his intelligence and test scores are mentioned - that's good.

Aww thank you so much. I am not sure exactly what the problem was first hand b/c I never got to oberve her with my DS (or any kid) at all (even though I volunteered a lot in the class. I was never allowed to be there when she was there. DS reported she shamed him for his poor fine motor skills (called his writing "pre-school style" in front of the group, used his writing as an example of how pre-schoolers work and not kindergartners (thing was he worked so hard to get to pre-school level - he is almost two years behind in fine motor due to the hypontonia ... I think assistant didn't know he had a 504 or didn't care or understand it. And DS, of course, is very sensitive. His big fear was to be held up as "stupid" or inadequate. And she did precisely that. Teacher talked with her about her doing that... However, DS told me that he "could never trust her again." She also would refuse to let him use his favorite color marker, or let him have his favorite color and then not assign any work with it... that kind-of thing. She hated that he questionsd the "why" behind leassons and rules. And yeah beleive me all day of DS' questions can be annoying but he truly is curious as to the "why" behind lessons and rules. It actually helps him comply. It sounded to me like she got into power struggles with him and was more concerned about "winning" against my DS than "reaching" my DS.

Yes!! Same with my two. They just don't accept "because I said so." They behave much better when they have an answer to "why." From a parenting perspective sometimes I stick to my guns with the "because I said so" and I tell them: "I could tell you why, but sometimes in life you just don't get to know, so you better learn to deal with that!" (Ah, life. ;p )

So true with my DS too! Actually, once my DS realizes/feels that most of the time a person will explain and tell him why, he trusts them enough to accept when they can't or won't due to time, energy ect... it's like a trust thing. But he will revisit the issue with you when he catches you not busy and more willing to chat and debate... LOL

Thank you all so much for heping me with this! I truly appreciate it and hope I can help others as much some day.

Okay, two more questions!

First, there is a paragraph that I think is more (or also) amenable to a modification to include more specific reference to 2e and more specific accomodation or whatever for it. It is this paragraph, which is included in the "Recommendations" section of the report:

"Staff should keep in mind the discrepancies between DS' cognitive abilities which impact the production, retention and speed of classroom work. Verbal comprehension and perceptual reasoning skills are high while working memory and processing speed are below average and well below average respectively."

Okay, so I like that this is in there but I think it needs to be more specific with regard to explaining the 2e. Futhermore, and more importantly, what exactly does "staff should keep in mind" mean? That's kind of a rehetorical question to y'all... Because I realize it doesn't really mean anything. I think we should have a more specific directive here... but what? Because how do we measure "staff keep[ing] in mind" and how do we enforce it? you know? (Perhaps it is the lawyer in me but it seems to be the school's tendency in the report to be rather vague in terms of what is expected of them... which leads me to suspect that is done purposely to 'protect' themselves from being called out for violation ... after all how can we say there is a violation when the accomodation is so vague? I feel my role (again right into lawyer mode) is to make it as specific as possible to I can make the school do specific things to help DS and be able to clearly hold the school accountable when the re is a violation.) Anyway, I think this is where I need to modify to include accmodation/remediation/whatever-it-is-DS-needs to help with the fact that he bascially has a "ferrari mind in a less-than-ferrari body" i.e., twice exceptional. Any help with what to say, and what to ask for, would be so very appreciated.

Second question! There is a recommendation that says the school wants permission to talk with DS' private therapist on an ongoing basis. Uh, really? They actually expect me to agree that? No, absolutely not. I am not giving anyone free reign to discuss DS' private medical information and treatment with DS' private therapist - what a betrayl to DS (he'd never forgive me if he found out and I wouldn't blame him) and what an intrusion on my family's and DS' privacy. If necessary, of course, I would give specific and limited permission at specific times; otherwise school goes through me. I will get relaevant info from therapist on an as needed basis (in the form of reports, letters, emails, etc) and pass along to school as I see fit and necessary (that is what I do with all of DS' medical info, isn't it? The school doesn't have permission to discuss DS with DS' vision therapist, neurologist, optometrist, etc). Okay, so sorry for my tirade, but my question is - is this a normal request of schools? Because I am bit offended by it (I know that's obvious). I guess if this is sort of 'par for the course' and pretty standard request then I will not be as offended (although I am still not agreeing to it). Furthermore, because all of DS' behaviors have resolved completely, once DS was taken out of the bad assistant's group, DS no longer gets therapy at the moment (at the suggestion of the therapist and I agreed - th eproblems are gone so no need to keep running there and paying money for therapy for behaviors that are no longer present)

I've never heard of this. I'd be leery of agreeing to it.

My son's team have never requested contact with any of his professionals outside of the school district. They've asked for whatever reports I can supply to add to his file, and that's it. I've had our private psychologist offer to come meet with the school team, but we didn't feel that the benefit would warrant the cost as the school team is already on board with everything she had recommended in her report, and are all very sensitive to DS's needs.

The team was also very sensitive about my confidentiality concerns, explaining that test results go in a confidential file (IEP's go in "public" files, as in any school staff who needs to can have access, but not test results or diagnoses specifics). The school district psychologist also explained that the child's file is the property of the parent and the school is simply the custodian of the file, which made me feel better.

I wouldn't allow school team direct access to outside people. I would stipulate that they go through you, and if necessary they can meet together but only with you present.

We have gone a different way with this. We have outside people we really trust to be discreet and represent our interests. We have given the school access to them. They go to the school, train teachers to deal with DS, and have made a huge difference in making school a better place for DS. They are listened to by school personnel where we are not (even when we say the same things). They take data and have figured out how to solve problems where their expertise has been really valuable.

It really depends how much you trust your outside people. I would not want private therapeutic information revealed. But if it is a matter of teaching the school what to do, it can be very good to have the whole team working together.

DeeDee

marytheres, I don't have time to reply with everything I have to say at the moment, but re the request for contact with the therapist - I think I would deny that by saying your son is not currently under the care of a therapist.

We ran into a very contentious situation with our older dd's school a few years ago where they requested us to sign off to allow school staff to contact her dr directly at any time. We were told that if we didn't sign they would not provide our dd with an IHP which she absolutely qualified for and needed. We absolutely trusted her drs but we didn't trust the school staff - the school nurse and the 504 administrator both were stubbornly insisting that our dd did not have the same medical issues that were clearly outlined on her routine medical forms filled out and signed by her dr. Our intuition, as well as comments made by the school staff on several occasions led us to believe the school woud use that contact to try to argue against our accommodations request (which btw was a very standard accommodation routinely given out in our school district). We were stuck in that we couldn't get the health plan without signing so we talked to our dds dr and they told us that a) they couldn't talk to the school staff without getting our explicit permission first due to HIPPA and b) they suggested we write a letter to them stating we did not give them permission to talk to the school staff unless they first contacted us.

One of our additional concerns in signing was privacy of records -the school nurse assured us that she was the only person who had access to dd's medical file, but in practice that wasn't really true, and the records weren't kept in a secure location.

Gotta run - I'll be back later

polarbear

Ps - another quick thought on 2e - does y school district have a person associated with the gifted department who deals with IEPs and 2e kids? I woud consider calling the gifted department supervisor and asking about this - if there is a contact person ask them for suggestions on the IEP. It might also be helpful to request that they attend the IEP meeting.

Thank you! Thank you! Thank you! All good points and good advice. And it makes total sense that you would tell the school they have access but then put in writing to the doctors that they are not to talk to school without permission from parent first. The medical professional is the one who gets sued if he/she were to violate the HIPPA (not the school) - doctors should be very cautious and very unwilling without specific permission. Thank God for HIPPA.

Anyway, I will approach first as "well DS has "graduated" from therapy so the permission is irrelevant and unnecessary." I can;t imagine how she would continue to push once told that.

I hate to sound paranoid. I am sure this particular psych has good intentions but I have always felt she has her own agenda with DS ... why, I do not know. But my feeling is she really wants him labled with a behavioral disorder of some sort... she wants him classified as something. I am not sure exactly what and perhaps she is truly well-meaning but I feel she is defintely has him mis-labled or misdiagnosed in her head. But I do not trust her at all with DS. If she had her way with DS he would be labled either on the spectrum or ODD, I believe - perhaps Adhd. But somehting like that I think she wants him classified as. I forsee no problems with DS teacher insisting on this stuff (I highly highly doubt she will) - she has had no problems with DS at all and she seems to get him ... I also do not presently see any problems with the new school psych pushing for this kind of thing - at least not presently. SO I think thanks to the advice and thoughts here :), we'll be able to navigate right around this safely and effectively.

I have no idea but I will be asking. Thank you - very good advice! Probabaly not; but you never know and such a person's involvement could be very helpful.

As an aside, why would a school psych want a child "labled?" Any idea? I mean, is it just that she really feels he has something going on that is not being addressed? or are there other factors at play? Funding? Does she want a 'shadow' on DS - to make it easier for teacher/assistnats? Or is it that she wants DS put in certain classes/programs that she perceives would make it easier on the staff? What? Just wondering what would be behind that if it isn't truly accurate and in best onterest of child. Or is that she just really feels like he needs a particular dx/lable and is trying to what she sees as best for DS?

Here it's for funding purposes. At the moment my DS gets limited shared TA time because he doesn't have the right tag/label to get designated TA hours. The school is pushing for a spectrum diagnosis (and he does seem spectrumy sometimes) because the funding is much better.

I know in my area it's often difficult to get the schools to acknowledge any diagnoses or areas that the student needs help because any additional accomodations granted to the student cost the school more money. The accomodations cost more money than the label would provide. In a situation such as marythere's son's, I don't see how providing behavioral support is going to give the school more money. Cost them money, definitely, but how would "needs behavioral support" give the school more funding?

marythere,
While the school may have the ulterior motives you are worrying about -- it's entirely possible -- it is also possible the availability of behavioral intervention is meant to curtail situations like you had with the unhelpful assistant. Behavioral supports can be a positive benefit in a lot of situations that don't imply anything negative about the child. For instance, when you were dealing with a teaching assistant who did not understand your child and was acting in a way that was counter to what he needed, if you had had someone trained in behavioral intervention come in to observe, s/he could have recognized that the assistant was supporting him in a way that forced him into bad behavior, and they could have forced positive change for your son's benefit. Just a thought.

I know there's a stigma to behavioral intervention, but it's not a "bad kid" label.

I'm not sure what the accommodations would cost them - I just know that it's been mentioned several times that a spectrum diagnosis can result in better support. At the end of the day it comes down to how many dollars they can get from the government Vs. kids in need. My DS is pretty high functioning so even if he got an ASD tag he likely would not get the full support that the same tag would bring to another child. Education is sorely underfunded. They're working towards a more inclusive model where as many kids as possible can be mainstreamed, which means more TA's. It'll be interesting to see what that will look like.

It also depends on the child, too, I think. Your DS likely does better at academics than mine. Who cares how many grade levels ahead my DS's math is/was... What they see in class are his sensory needs, his attention problems, his impulsivity, his social awkwardness and his French language deficits. Meanwhile the math they do is below his level so he gets bored and sloppy with it. Also his language disorder interferes with his ability to do math word problems. It's a blessing really, because he gets support. (Strange way of looking at it, I know).

See, I realize that BUT my problem is I do not trust that "behavioral specialists" or psychs at the school district righ now to truly understand about my sons particular disabilities and how that affects behavior. It's the same reason I do not trust the psychologist. It's like these people have autism/adhd/odd colored glasses on and constantly see behavior through that lens and it's too easy to mislabel my son. For example, at the WISC when he couldn't do the block design and other visual perception tests. I observed. At the conference when we discussed out observations, I said "I don't think he is seeing properly - I think there is a vison issue or LD" and they kept saying - saying "oh, no, that's not it he is so rigid in his thinking, it shows us he can't see things from others' persepctive." I said basically "something is wrong like vision or dyslexia or something and his anxiety is coming out because he is so intelligent stuck inside a body with an LD that no one understands so he is being treated like he is a behavior disorder." The psych said to me "I have been doing this for twenty years, I know what I am talking about and I htink you are way off base." Well, guess who was right? I was. Because she hasn't been "doing this for twenty years" with my son - she saw him for 20 minutes. Same with the computer example above post. Oh, he is resistant to tasks because he is defiant. Then when I look at the situation, it's not because he is defiant - it's because his visual motor integration level is so low and he is frustrated and feeling dumb and the adults around him don;t undertsand what the problem is either. And you tell these people this stuff and they still don't seem to fully get it... "we don't understand why Ben is so resistant to copying from the board. He is defiant and refuses follow directions" This happens enough that I simply do not trust behavioral specialist and psychologists at all. I just do not trust them anymore. Does that make sense? If I could being in a vision and OT to be the "behavioral support" and educate the teahers and staff, I would do it in a second because they together they usually immediately see the true why behind the behavior and know how to support my DS. But the other people, seem to full of autism/ODD/ADHD.

Another example with reading, my son would become so frustrated with reading his eyes would hurt and tear and he would rub them. One assistant kept saying "stop rubbing your eyes Ben!" acting like he was purposely being defiant or purposely being frustrating - "to avoid the task he was given." She said if he would stop rubbing his eyes like he was told they wouldn't be bothering him. DS beicmes irriate at not being believed and being treated unfairly. He bgins to resent said assisnt, said assistnat thinks DS nneeds to learn how to comly and "follow directions." When that happened in his eye testing the vision therapist knew immediately it was eye strain and that he needed a break. Do you see what I am saying? The assistant treated him like he autism or defiance or ewhatever and lept pushing him to his breaking point. Whern he really needed someone to take 5 seonds to see the kid's eyes really did hurt and he needed a break! and to be tretaed with respect! Even his teacher now, She had trouble with him reading one day - he was skipping words and losing his place. I had wrote her a long detailed email about his vision issues and the accompanying behavior and what he needs. And she is wonderful I do not mean to disparage her. But she emails me and tells me about it and says DS is upset because I want ot bput him on lower readng level and she thinks he is on a lower level because he was skipppong workds and struggling, etc. (which upset DS... but he did not act out about it he was just sad). She ended by saying the "print was fairly big so I do not think it's a vision issue." SIGH. So, I had lead her through the the following questions, (which I had hoped after educating her she would know to ask herself): How late in the day was it and how long had they been doing close-proximity work? (late afternoon) Was he or she pointing at the words with a finger as he read? (no) I said did he use his EZC reader? (no) I told what was up and what to do - he was suffering from fatigue and eyestrain, so I told her give him a break and use EZ reader or finger. He read fluently after that. Fortunately, the teacher and I talked and I was able to intervene. What normally would have happened is teacher would have moved DS down, would not understand/accomodate properly for DS's vision and Ds would become resentful and angry at feeling stupid and being misundertsood and then the behavior charts come out and the school psych comes out to force Ds to be more cooperative. And when Ds further detriorates and then "it's oh he has ______ disorder and needs "behavioral therapy or whatever." It is sooooooo frustrating! Teacher has his reports and my email and still she couldn't see what was immediately obvious to me. If some "behavioral specialist" goes into that situation and "supports" by treating him like he has a disorder that he does not and without truly understandering the impact his intelligence and his physical limitations have on him, I think it could rerally be disasterous for DS.

Am I making sense? Or am I crazy

And, btw, in my area it is so odd ---- diagnosois (at least of ASD and ADHD) are everywhere. They are not hard to get at all. I have friends in other areas/states who have the problem of not being able to get diagnoses that they feel their child truly needs.has. But here they seem to me to hand them out like candy bars. Our district is known for being good for autism and spectrum disorders - which is wonderful if you child truly has that issue.

I don't know. I am just so scared - DS has been misundertsand and mislabled so much already and he's only in first grade. I may be way off base and a FBA and Behavioral Specialist would be great and would truly understand/be knowlegeable. But I just can't risk it. I am too scared for DS. I see the road that they seem to keep trying to drag him down and I truly believe it could be really really disasterous for DS and it scares the crap out of me.

I have two sons. One who is obvious and can not function (at ALL) without full-time paraprofessional support -- and one who is quiet, fairly well-behaved, and just functional enough to be allowed to slip through the cracks. In both cases our primary goal is making them functional adults.

Labels help get accommodations, in our experience, because they help force the education system's hand to acknowledge a problem. I have seen schools label ADHD too much so they can get kids overmedicated. I have seen schools ignore problems because they don't have the funding for the accomodations (so, SO much). Ihave seen schools ignore actual diagnoses because they don't have the resources to accommodate. I have just never encounted a school egregiously labeling-for-pay. But perhaps your area is just different than the places I have lived and worked.

EDIT: I don't know why I consistantly misspell accommodate.

I'm sorry it has been so tough for you. People are complicated creatures -- 2e kids more than most. I have trouble getting people to understand my older son as well. Maybe you can ask to meet with the behavioral specialist before you agree to the IEP? Make sure they have a sufficient understanding of your son's needs before he or she is allowed near them?

Will he still have a TA? Who will be instructing and coordinating them on his vision issues?

Yes, and no

You need to continue to be proactive because at this stage your DS can't really self-advocate the way he needs to.

I keep thinking back to the part you wrote where his eyes hurt and the assistant thought it was because he was rubbing them. In my son's IEP they have "frequent breaks" because of his ADHD diagnosis. Whether or not he actually has it doesn't really matter - what matters is that if he shows signs of any kind of attention/sensory/discomfort/stress etc etc, whoever is working with him will allow him to take a break. So he could be cranky because he's hungry (nothing to do with any diagnosis) and they'll still ease up on him. Whether or not they think it's the "ADHD" or anything else doesn't even matter - the point is, he gets the break he needs.

Is there anything like that in your son's IEP? Maybe you need a "frequent breaks" provision because of his vision. (This will also help for a clever kid who is doing mundane work below his ability).

Also keep in mind it all gets easier. My DS is 8 and it's so SO much better than a couple of years ago

Me too, lol, ...yay spell check

Re: "labeling for pay" ...I'm not sure I'd put it that way. They can't put any label on a child just to get more funding. There has to be a legitimate diagnosis from licensed professionals. A parent doesn't just say "ok, tag my kid with ASD" ...and then presto, more dollars. Not at all.

Also I'm really curious about how schools get kids medicated for ADHD - I'm assuming it's by pressuring the parents? In our district that simply doesn't happen.

It's the parents' decision, and I wonder sometimes if the school is even allowed to ask if a child is medicated. I'm thinking possibly not, because this would be considered confidential medical info.

Frankly, it is confidential. It's none of the school's business. Period. The only time knowledge of any pharmaceutical taken would be required would be if they were involved in administering a child's dose mid-day.

It's pretty funny, actually... they're soooo vague about it... "Have you given any thoughts to some of the treatment options the psychologist recommended?" They won't actually say it directly. I reply with "You mean are we medicating him? We haven't taken that off the table, but we're not trying that at the moment since he's pretty happy and functioning well." Yet the same staffer will say "What about OT? Have you looked into that?"

I feel badly for parents who feel pressured to medicate their kids - I'm guessing there are schools who apply undue pressure. This to me indicates a systemic problem with public education. I think I'd home school at that point.

" Maybe you need a "frequent breaks" provision because of his vision. (This will also help for a clever kid who is doing mundane work below his ability). "

yes his vision doctor put this in his report under recommendations to school he put in a lot about this.

Yeah, it's through pressuring the parents. Of course, many kids ARE helped by medication, so it gets very complicated knowing when it's pressure-to-facilitate positive change and pressure-to-facilitate negative change.

ETA: I was asked just last week by someone in our education system if my older son was medicated, come to think of it.

Oh that's good. Ok, so that assistant was definitely not following the IEP. This is good because it won't be the same with every assistant. The diagnosis doesn't matter: breaks are breaks and must be taken.

Yup, medication can be good. The problem is side effects and additional meds to manage those... and on and on it goes, and then... voila: a messed up kid. I think a better approach would be to PROPERLY FUND ADHD (I have no issues with this ;p ) so that meds can be a last resort and instead these kids could try dedicated TA time first.

If that happened here it would be in casual conversation with a staff member who felt comfortable enough with me to ask... it wouldn't be formal file information gathering.

I've known parents who've taken their kids on and off meds (doctor supervised of course) purposefully without the teacher knowing to see if there are any differences in class: they have the teacher fill out more assessment checklists to see the results (the teacher not knowing about the meds status removes any bias).

Actually, CCN there wasn't an IEP at that time (and therein lied the problem, I suppose). We still don't have one b/c we haven't had the meeting yet. But everything DS needs is laid out in the IEP by me and his docs. There shouldn't be issues if the IEP is followed. Period.

I guess I am getting worked up over nothing really. (I suppose if I do a bit of soul searching the reality is: I am pissed off at the 'recommendation' that we need a behavioral specialist when I feel that this iep will indeed prevent behaviors - we know the problem and the solution (doctors have laid out both clearly in reports provided to the school) as long as staff follows it all will be well. Her suggestion of this pisses me off I think b/c I think its her way of saying "well I don't believe you that the iep and his physical/neurological limitiations paired with bad/uneducated staff is the problem - I think YOUR KID is the problem and will continue to be a problem b/c he has _____ disorder."

There haven't been any behavioral problems this year to even base an FBA on (he has gotten a perfect conduct grade for every day so far and he is happy at school so far this year). His teacher reports in writing that he is happy at school, and doing well. My point is basically - we don't need an FBA/behavioral specialist because there are no "behaviors" presently at all . The behaviors he had last year were due to unknown hidden disabilities and lack of understanding and support for the disability that was nown as well as obviously for the unknown one. There shouldn't be any "behavior" issues if his IEP is followed properly. If behaviors do present and that can not be managed by follwing his IEP I will get a private assessment done by a psych/neuropsych that I think is qualified to assess a 2e child with hypotonia, vision disorder and anxiety that results from that.

And that is what I am gonna say at the meeting and in writing.

Re an aid, DS does not want and "aid" or shadow" He is very adamant about that. I don't want him to have one either.

As long as he gets his therapies and gets his accomodations, he should be fine.

Master of None- Thank you ... Awesome words of advice and thanks for understanding! I see that you totally get why I am scared.

They can have access to DS medical records (pertaining to his disabilities) In fact, I would consider giving them free reign to talk to DS' vision doc and OT. But I will not give them free reign to talk to DS psychological therapist without my being involved. DS doesn't see the therapist now anyway.

When you lose trust in your district - or feel that certain people in the district have done things to harm your child - it can be very difficult to feel comfortable releasing even more information. Sometimes, though, you may have to do it.

We were just going through this psych release question this week. Psych plans to attend the next IEP meeting so needs a release to be there. No problem - if her presence helps I'll sign a limited release. District is offering, sort of anyway, to pay for the psych eval but the person at central office handling our case said that in order to pay for it she would need to be able to speak to the psych. Just like marytheres I was uncomfortable with this - why on earth would I violate my DD's confidentiality when certain people in the district have already proven to be so untrustworthy?

Our consultant worked very hard to convince me to sign the release. He truly believes that this person is committed to helping DD and so far everything psych has said supports our position. Totally, completely supports it. He said that if there were something we were disagreeing about he may be more concerned but this way the psych can do some of the heavy lifting in terms of explaining what DD needs.

I also spoke to the psych about it. She also told me that she believes this person "is on our side - you can trust her." Psych also said that she has enough experience working with schools and is protective of her clients so it should be no problem. If she gets a bad feeling she will immediately tell me and I can pull the release. The psych also felt that the new SW working on our case seems to "get it" and would really like to be able to speak to her. "I think that SW is our salvation. She will get us out of this mess."

So I signed a release naming these 2 people personally - I did not mention the school district. Now I have to hope that it works out and doesn't back fire.

The federal government has never fully funded IDEA. Until that happens, districts are supposed to get federal money for each child identified and served under an IEP, but what they get is pathetically little compared to the cost of serving such a child. Identifying children is a money-losing proposition, which is why many districts (including mine) have been found in violation of their obligation to locate and serve children with disabilities ("child-find").

Did you know? They are *obligated* to try to find kids with disabilities. That is more likely what's going on there, CCN-- if your DS seems spectrumy, the district is obligated to attempt to determine whether he actually has an ASD and offer services, otherwise they are in violation of the law.

I'm sorry it makes you feel pursued in a bad way-- if "child find" is what's going on here, I actually find it good that someone is taking that legal obligation seriously. It certainly isn't taken seriously where we are. Perhaps you could just ask the psych why s/he thinks what she thinks and why s/he is taking the actions s/he is.

DeeDee

I don't think most practitioners want inaccurate labels as a matter of professional practice. (I have seen incompetent school psychs try to avoid labeling a child who badly needed to be identified, actually, in a school system that was pressuring staff systematically to under-identify disabled kids, but that is another story.)

Accurate labeling is beneficial in helping everyone in the situation understand what is going on (and what is not); the causes of the behavior, what strategies are likely to help or make it worse. An accurate label, accompanied by the IEP process, gives access to the proper services and accommodations that make school manageable for a kid who wouldn't manage otherwise.

And a correct label offers a handle for teachers and peers who would otherwise label a child "a behavior problem," "a bad kid," or worse-- I would much rather my DS and his peers know he has a disability than think he is a "bad kid."

I would not assume that the school psych is evil, or that there is some kind of terrible agenda at play. Sometimes that is the case, of course, but I wouldn't jump there as a first, or second, or even third option. Even though I have met people with truly bad intentions toward my kid in my travels through the educational system, I still have to be dragged to that conclusion, because most people were not deeply evil; most just didn't understand him yet.

DeeDee

I can remember a meeting where we were trying to get a higher level of services for a student. I pointed out that none of the official diagnoses in the school's file would qualify the student for the program we were meeting about and asked what the prescription was for. The school psychologist realized that the medication did not match the diagnoses we had, either, and the private provider seemed to know something that we didn't. The matter was dropped until we could set up permissions for communication with the private provider.

FTR, I don't think the psych is evil at all. But I do not trust her. I do not think or trust that she truly understands my DS or what his issues and that lack of understanding could be dangerous for my child. I think she has somehting in her head and has tunnel vision with regard to that.... I could be wrong, of course, but my instincts are rarely wrong (I am very persepctive and pretty good judge of people). I am just not willing to chance it with her as I think an iaccurate lable could be pretty devastating for my guy and prevent the support and label that he really needs, ykim?

I do not think she is "evil" - I just think she is ignorant about my DS and doesn't seem to be willing to look at other angles - basically, I think she has a bias and I don't see her willing to even attempt to shed that bias. Make sense?

Good Luck Pemberly! I followed your story and I could relate to it a bit! My fingers are corssed for you and your DD!

I think this is such good advice. Thanks

Exactly.

Totally agree! This is exactly what I want as well! But I want them to have the RIGHT disability not one that is not DS - i.e, hypotonia and vision disorder and related anxiety not something DS does not have. And, yes, I hear you that since some of the same accomodations for, say, ADHD overlap with the vision disorder (like breaks) so I should be okay with an ADHD label for example b/c even though it doesn't fit b/c either way he still gets his breaks BUT I just am NOT comfortable with that. And I honestly don't know much about ADHD - I do know how the vision thing is affecting DS and I do know what he needs for it. YKIM? I want them to give him the breaks because they know that his eyes are fatigued and strained not because they think he has ADHD... I am sorry if that if that makes me a bad person or bad mom or whatever but I am just not comfortable with it. I truly think that a wrong label would only hurt DS and I am not willing to do it.

No, not at all. I'm like you in that I believe in trying to help kids when they need it. I don't really feel affected by whatever motives they have. I'm taking a leap of faith and assuming that their primary goal is to help our kids. Why wouldn't it be?

They're actually not taking any action at all, just suggesting that I look into ASD further (and this is after I've already had a psychologist rule it out, so it's not like they have an issue with any apathy or non-compliance on my part).

I think that each parent's experience is affected by their own level of involvement. I don't think they "take action" with me because I'm already proactive. I might be having a different experience with them if I ignored their concerns and refused to have DS tested.

Also they've never said anything about any legal obligation to identify kids with issues. It doesn't mean there is no obligation - I just haven't heard about it. They have said, though, several times, that an ASD tag gets better funding. Maybe they're trying to motivate me rather than make me feel pressured? Who knows. Whatever - it is what it is.

They're not looking to falsely tag anyone - they just don't want me to miss a funding opportunity. If DS is assessed by our provincial autism network and found to not be on the spectrum, then the school district would cross that off their list of possible care options.

That doesn't make you a bad person - it makes you a caring, involved parent Each education setting has a slightly different climate, and you know better than anyone what impact each diagnosis would have on your particular situation.

I my DS's case I'm just trying to work with what I have. I would love to have the correct diagnosis for him, whatever that is. Some kids are clear cut, and some are not. DS is an enigma - he doesn't really fit anywhere. My comments here would have been a lot different a year ago... but now I'm at the point of letting go of my prior idealism and instead taking what I have and making it work.

marytheres I don't think anyone who takes the time to research these issues, find this board, read all the information posted here and then post asking questions to help their child could EVER be thought of as a bad person or a bad parent. No way. And I don't think anyone here implied that. Sometimes advocating for your child is just exhausting - physically and emotionally. It really takes a toll. Ask any parent here - we've all been right where you find yourself now. Passionately advocating for your child while at the same time trying to figure out just what it is that s/he needs.

You and I share an unfortunate experience - someone in the school who has made the situation worse. MUCH worse. And a child who has responded very, VERY badly to that person's actions. If the pysch saw only the result of your son's exposure to this person she may have legitimately believed that "in her professional opinion" she was seeing something that needs to be addressed. It doesn't mean that she is right and it doesn't mean that you are wrong for fighting to keep that label away from your child.

Hopefully with the new correct diagnosis your son's needs will be met more appropriately. With an improved learning environment hopefully there will be no further behavior issues so it will be a moot point. However if his anxiety is triggered again somehow, just as my daughter's was when a substitute triggered her memories of her terrible kindergarten experience, you may want to revisit the issue. If this happens it doesn't mean that you are wrong, or a bad parent or anything else. It just means that figuring all this out is a process. It is hell while you are in the worst of it but I for one have to hope that we can come out the other side with situations as successful as DeeDee's, polarbear's, mon's and the other parents further along on this path who so patiently stick around this board to help us through the rough patches.

{hugs} to you.

Aha-- provincial. You're in Canada. I know nothing about how the law works in Canada. My apologies.

DeeDee

I'm definitely not saying to allow your child to be mislabeled. I would argue against that too. Just saying that the right label has uses, and there is nothing wrong with "labeling" per se if the labels are correct and used correctly.

No, I would not let them "diagnose" something that is not there; if need be bring an advocate or an outside professional to the meeting to help you make your case to the team until you are satisified that they understand what's going on.

If School Psych is concerned about behaviors she's seen in the past, but those behaviors are not there now, let her know you'd be happy to revisit the issue if those problems re-surface. There really isn't a point in taking data on something that isn't there, and any behavior analysis should be based on data.

It's really important that the IEP reflect reality to the best extent possible.

DeeDee

No worries Some of it may be the same anyway... I'm not sure of the differences either.

Thanks! I don't think anyone here was implying that either - sorry if I came off that way ... Everyone has been very helpful. I truly appreciate and find helpful everyone's posts and advice here.

Agreed! Thanks CCN! And thanks for all the time you have taken, you and everyone here has been helpful.

Agreed. Good advice!

I sent an email back to the psych cc'ing the principal and the new school psych (b/c both will be on the "iep team" and at the meeting and both had received a copy of the psych's iep report.) In it, I discussed the three 'recommendations' with which I have issues: (1)fleshing out the 2e aspect a bit more if possible and requesting consult with someone in the school psych dept experienced in 2e if possible; (2) stating DS isn't in private therapy for his anxiety anymore b/c he has recovered so well once away from problem assistant and since vison issue being discovered treated effectively so no need at present to for access to private therapist since he isn't even seeing private therapist; and (3) saying no need to have a behavioral specialist and/or FBA presently because past behaviors psych seen & was concerned about in the past are not there now and should not as long as iep is folllwed and therapies continue. But that I'd be happy to revisit the issue if those problems re-surface.

I thought that those were pretty reasonable. Both psychs have already emailed back and seemed receptive. Psych who wrote the report said she was glad to hear he is doing so much better and that all that I bring up in email will be incorporated into the iep mtg and final report. I take that as a good sign! I guess I took her recommnedations a bit too personally. Anyway, I won't really know until we have the meeting but I am much more at ease now and optimistic.

I think DS will have a fab year with this iep in place and followed and with his therapies helping to make him better. He is already so much noticeably better. We had a party for him today and one of his friends' mom who hasn't seen him since last year (and had commented last year how sad and anxious DS seemed and even commented back then how she felt like the school staff in general did not understand him...going so far as to "stick up for him one day" when she thought the assistant misunderstanding him) remarked on how much happier and more confident he seemed!

Good news all! Talked to psych (the one that I do not really trust) about the three issues and it went really well! So relieved. I am starting to trust her more now So on to the meeting and may the cordial and supportive environment continue!

Aw, that's awesome Sometimes you just need to meet face to face and air your concerns.

Yes! It was over the phone - she called me re the email that I had sent to her re some of my concerns with the iep report.

She was good about the 2e thing and said she and other psych are experienced in 2e (eh -- I don't know about that but she was basically like "we don't have 'one' psych with a particular expertise in that, we all know about that." ... but she agreed to add more language about it and to say the team will continue revisiting and evaluating that particular the issue to serve that need over the months and as we think of ways to do that...

We got a little stuck on the behavioral specialist - but she did seem sympathic to my fears regarding that and we both agreed since there are no "behaviors" at present anyway it's moot point right now. We agreed we'd revisit the issuse should behaviors surface, she assured me she would need my consent to do bring in the district behavioral specialist and/or do an FBA so we would fully discuss it before, etc. and of course I wouldn't have HAVE TO consent if I didn't want to and/or if I preferred to bring in my own professional instead. And, she was fine with me not giving her access to DS' therapist - only if I think it is necessary or want to.

marytheres, it sounds like you'll be going into your IEP meeting with things in a great place - good job advocating!!! I hope you'll give us an update after your meeting

BTW, this thread has grown exponentially since I checked it the last time - there are probably at least 900 things I'd like to reply to when I have time to sit down and actually think about things

Good luck with your meeting!

polarbear

So I dusted off my lawyer hat and put it on and started nosing around to find out if vision therapy should be provided (ie., paid for) by school district under an IEP pursuant to IDEEA for a child who has a vision disability like DS' in order for Ds to access appropropriate public education. Turns out there are quite a few cases that have found that vision therapy does indeed constitue a "related service based on peer-reviewed research to the extent practicable... to be provided so as to enable the student to advance appropriately toward attaining his annual goals and to make progress in the general education curriculum." I wrote an email arguing for DS to be provided time during school week to get VT without being penalized and for the District to provide funding/reimbursement for it. Fingers crossed!

And, in order to accomplish this, I provided them with unlimited access to communicate with DS' vision therapist and doctor

Good luck marytheres, and good job doing your research!

FWIW, I know of another parent here in our district who successfully advocated to have her dd's vision therapy paid for by our school district. Our dd's wasn't covered, but she didn't meet the bar to qualify for an IEP.

polarbear