Gifted Issues Discussion homepage Forums Twice Exceptional Attention Issues Interevention

Okay, so I took y'all's advice and we have an IEP meeting scheduled and and some intervention with regard to that underway (despite my dread fo dealing with them and just wanting it all to go away). Some good news and some pro-active steps by the school appear to taking place! We have decided to have an IEP meeting at the end of January to address the attention issues. Prior to the IEP meeting, the school is to "collect data to establish a more precise baseline regarding DS's ability to sustain attention to task. The information will be used in considering strategies and determining reasonable expectation." This is good, no? I mean, seems better to me than just hitting me with "your kid never pays any attention at all; yeah, he does well grade-wise cause he's smart but you need to do... *something* b/c we have no idea"

I hope this means we will get some very specific information as to when specifically his attention begins to fail. Because I KNOW the situation is not that he is NEVER paying ANY attention AT ALL as was reported to me at the parent-teacher conference. I know this because I have volunteered quite extensively (every week last year) at the school and have seen him pay rapt attention at times (e.g., story time, discussion time - not sure what this is called but they discuss something they have learned or read and also disucss whatever problems was presented and how to potentially solve them, reading time, etc.) Also, how could he possibly get 100% on all of his tests if he is "never paying attention at all?"

Last year's teacher reported that he pays attention in "class" but pays no attention when directions to do things are being given like where to go next, what to do with their things, what supplies are needed, etc. She is the teacher whose rating scale came up "at risk" for "attention" and she reported in Basc2 and in interview that DS "has no trouble with inhibition, impulsivity, self-regulation, etc." She told me personally he simply doesn't pay attention to housekeeping items and directions regarding housekeeping items. She specifically said, "I may need to tell him several times to order lunch, put his folder in the box or put his name on his paper. He will often ask what to do right after a direction is given." I personally also strongly suspect is he may be paying no attention when the teacher is teaching math concepts he already knows/understands, etc. (this kind of thing may be worse this year since he does afterschooling in math and is even more ahead). I don't know what that means in terms of ADHD but I think if we specifically break down when attention is failing and put some interventions in at those times it can only help. Also the school doesn't know this right now, but I should have his Woodcock Johnson achievement scores by then. Last year he was well over one grade level ahead - usually 1 1/2 but still relatively average for his age. This time, based off of the few WIAT subtests that were given a few months ago, he is well over 2 grades levels ahead at least in reading comprehension and math problem solving. So, anyway, I have no idea what the achievement scores will be but I am thinking they could possibly line up with the attention issues to some extent (or not) to give a picture of perhaps some higher level work being needed. If not then we(I) know that too ... but, if so, we can discuss it at the meeting I suppose.

So, is there anything I should ask for specifically as they gather the "baseline" data? I want the results of the observations ahead of time so I am prepared (I hate being surprised with regard to my son - it takes too long for me to recover emotionally to be any good so I need as much info ahead of time. That is a feasible and reasonable request right? I'd also like to provide the private ADHD evaluation place with this info.. I assume it can only give help them get a picture of what is happening and help.

I would want to get them moving past "attention" as a concept. For example one category from above would be identifying when the cognitive demands of motor planning related to his disability interfere with his ability to remember a request or to instantly respond to a question.

And identifying appropriate daydreaming rather than inability to pay attention as a form of mental compacting. If someone is reading already known or irrelevant information, then thinking about something else seems an entirely healthy coping mechanism to me.

Zen, gosh, thank you! Very good idea! And, finally, someone who is willing to at least give some thought to the concept that "inattention" doesn't necessarily and invariably mean "ADHD!"

But how do I ask for this from them? Will they even know what the heck I am talking about? Do I just request it bei included just like you have written here?

Oh this is great, thank you! So, speaking of motor planning (LOL) - how do I go about accomplishing this? (without pissing everyone off). Put it an email laying out these requests be incorporated into the data collection phase? DH brought up concern yesterday over who was going to do the observation as he is concerned that teacher, while may be a nice person, already has her mind quite made up ...clearly. Maybe the school psyuch should do the "observation?"

Would the behavior team be able to document observation without interpretation? or would I need to specifically request that? I agree - I am very uncomfortable with Behavioral people interpeting my son's behavior becasue they usually have set things n their mind, see things through that lens and that lens does NOT usually include any knowledge about Ehlers Danlos, DCD, vision issues, etc. It's usually an adhd lens, an autism lens, and/or oppositional lens.

Ask them if they can do a BRIEF (both parent form and school form)--it looks more at executive functioning than just ADHD. DS came up impaired for some of thing things on the BRIEF like "working memory" but I think this is different than ADHD (and it's different from working memory on the WISC). He sounds like my DS in that he is not organized and often needs cues about getting materials, putting things in the right spot, etc. But his actual "attention" is good. It could help tease out what the exact issues are. In my DS they wrote an organizational skills section on the IEP--the POHI woman for the district is supposed to be helping the teacher with this in terms of supports for DS, and coming in to observe 3 times per month. The problem is that I don't think the teacher does anything--she doesn't even have DS use his slant board, so it's pretty useless, but if your teacher is even the slightest bit more competent, maybe they can put together a workable plan.

btw, not sure if my term "appropriate daydreaming" is sellable as it is somewhat of a repackaging of "bored," maybe "lateral exploration" or "self-driven enrichment." And that's the gifted angst bit.

But I think the critical part is getting them to not penalize him for impacts from his disability and changing their lens to see those for what they are. I believe they need a baseline of what demands are EDS related, before they asses attention in general.

Motor planning can be much more intensive than just getting from here to there, potentially down to just below conscious control like position of the hand, adjusting to any current pain, remembering the path that a letter takes where to place each element, reviewing those plans with current muscle fatigue levels, current joint issues, current pain, revising, continuing, checking feedback, etc.

It would be an interesting sensitiviy training to have people operate a four axis robot arm to try and write their names while answering math word problems. Even an Etch-a-Sketch might illustrate some of the concept or writing with their foot.

They did this last year and, yes, exactly, it indicated he is not very organized and often needs cues about getting materials, putting things in the right spot, etc. They do these evals at the school but it seems like nothing ever really gets done about them, ykwim? The school psych makes some weak suggestions and no one really follows them.

It seems like they already did the eval they need to do then, they just have to get it together and put a plan into place. If the did the BRIEF and it showed what areas are impaired (working memory for instance), why would they need to do more evals.

Working memory deficits are common with DCD so they just tacked it onto his physically impaired IEP (with the medical diagnosis DCD).

If we are trying to get the teacher to be more sensitive and want her to fully understand...I agree she should have to write with her foot...but let's give her gout in her big toe or a big old bunion or both while we are at it...so she can experience the pain part too.

Here is my gut, maybe irrational, emotional feeling: I think they WANT an ADHD dx and are pushing hard this year to get it. I know this is cliche parent-reaction and maybe I am just reacting poorly/misreading whatever. But I think they really want me to try meds (and maybe their hearts are really in the right place but we disagree). I think the teacher's talk in the lounge is that "[DS] doesn't need a scribe and writing accommodations - he needs ADHD drugs! His mom is all about writing accommodations and dysgraphia and his hypotonia(EDS); oh, and his 'giftedness' (eyeroll) but his real problem is that he is just an ADHD boy and needs some drugs." Last year, he only came up at risk for attention... This year, their goal is to make sure he is no longer "at risk" but clinically significant and then it's not their problem he has school issues (i.e., it's not because they aren't supporting his already identified disabilities, and it's not becasue he needs higher level material), it can be 'fixed' with some medicine.

This is not to say he doesn't have ADHD! He may have it... Although I really think that of he does it's relatively mild. I think the problems at achool (adhd or whatever) are exacerbated by the fact that they do not like to give him scribing accommodations. They do not like that he gifted. He's a noncompliant, pain in the butt who complains he's bored and can't write. The negative halo. My other kid has the postive halo - nothing he does is a problem. This kid is "always" a problem - he does nothing right.

I would bring up the BRIEF and tell them "look, here it shows he's impaired with organization and working memory but good with attention. Let's try to make some concrete adjustments to help with the executive functioning issue and see if he improves." If they put a plan into place and he STILL is struggling, then look at ADHD, medication, etc. Medication is great--it works wonders in my DD but not something you want to give to a very mildly affected kid who can do well if given more structure. My DD is a basket case when she is not on her drugs. It's obvious that she needs them. With my DS I don't even want to go there unless nothing else works. And like your DS he comes out fine on the computerized testing, the "attention" parts of the inventories, teacher says he listens with rapt attention in class. It's just organization. And who knows if meds would help if that's the only issue anyway. They need to be able to separate in their minds if it's an "attention" issue, or an "organizational" issue. There is a definite difference.

I don't know what the other testing showed about attention, but if it was borderline normal I would point out that organization is worse and clearly the biggest problem, so why not start there?

Thanks Blackcat. Honestly, i do love hearing medication success stories. So please feel free to remind me often how much it has helped your child. Because I WILL try meds if I get the go-ahead from his private eval and the opinon is it could help a lot. Dr. Barkley really gave me hope when he said if your kid's gonna have something then ADHD is the better thing to have because the meds are good and most (90% I think he said) repond well to them (with the right tweaks). Some EDSers I have talked to said ADHD meds helped them and even seemed to help with their EDS (maybe the brain fog, the fatigue, etc that is also attributed to EDS). BUT my fear is that I don't want to give him meds for a disorder that he doesn't have. I want to make sure he really has it at a high evenough level that warrants a try with medication.

Interesting story about DD. Yesterday she was off school and I worked with her on ixl.com a little bit, since she learns no math in school and she likes it. I thought that she did not have her medication. I couldn't figure out why she wasn't wiggling, why she was actually focusing on the questions, and seemed calm. I thought "maybe she doesn't really have ADHD if she does this well without meds?" I was seriously confused. Later on I figured out she DID have her medication. Dh gave it to her before he went to work.

Thanks this is good advice and reassuring. I think this is exactly how I will proceed privately.

Before I got to the part that she actually had her meds I was thinking "computer." Apparently, computer games are unique in their delivery of consequences that really reach a peeson with ADHD ... Something like the immediancy and the several things going on at once? So, basically an person with adhd supposedly can concertrate for hours on a computer game without meds. Not sure if IXL would count as a computer "game," though. My DS does great on it, though. Very focused by it His computer vision therapy though - whooaaa excrutiating for him apparently

Yeah, I don't think it was because it was the computer because when she is NOT medicated and tries to use that site, usually she is very wiggly, actually gets up and paces around the room, takes FOREVER to look at each question, etc. It's not really a game, it's just math on a screen. But it's been a while since I tried it with her and she's not medicated. So I thought "maybe she's growing out of the ADHD." But nope.

I love you guys

Okay. I drafted this to the team about the Baseline Data Collection, let me know what you think:

We had a similar situation when our ds was in elementary school. In our situation, I don't think anyone specifically "wanted" an ADHD diagnosis, but it was what the school staff was most familiar with and some of ds' behaviors looked like ADHD (and it didn't help much that he had a preliminary ADHD diagnosis based on one teacher's opinion on a BASC when he was in 2nd grade). Whether or not the focus on inattention that's happening means that your ds' school staff "want" an ADHD diagnosis, I think it's important to listen to your gut feeling, and keep the focus on showing how the disabilities he's already diagnosed with impact him at school. If you find through the behavior observations that there are situations that aren't explained by the diagnosed disabilities then at that point in time you, as the parent, might want to look again at ADHD (or something else), but the first step is to understand how what you *know* to be his challenges impact him in the classroom and to get accommodations and remediation in place (not just in writing, but actually used) that address those issues. (I know you already know this, btw!). This also isn't a process that will be one-step - I suspect that you will have suggestions and ideas put in place from this first behavioral observation, and then his functioning in the classroom should be looked at again after the accommodations are in place for a certain period of time etc to assess what is/isn't working. If something isn't working, it doesn't mean he has ADHD, it means that thought needs to go into all the challenges he has, look at the specific situation and understand what's going on, and revise the accommodation etc.

Our ds' school team did like to suggest that anything that looked like an attention challenge was ADHD-related (particularly since he had that misdiagnosis in his paperwork). The way we had to deal with that thinking and with the suggestions at meetings etc was to politely and without budging remind the staff that ds had DCD, review what DCD is and how it impacts ds in general, and then explain to the staff how it was most likely impacting him in whatever situation was being discussed. If it showed up on IEP paperwork, we *always* used the comment column to explain that from our perspective how the issue was related to DCD (if we disagreed with anything the team said in official paperwork we always used the parent comment section to state our disagreement and our reasons for the disagreement). If it came up as an issue in a discussion in a meeting but wasn't specifically on paperwork, we followed up in a summary email from the meeting by stating the concern and then stating what we suspected was the reason for whatever the behavior was. In our case, the words "ADHD" weren't mentioned much once we were past the 2nd grade teacher and ds' IEP eligibility process, but the word "attention" was thrown all over the place all the time and the implication behind it was ADHD was the reason for inattention. It felt like I was saying the same thing over and over again sometime but it really did put a damper on the ADHD-push by saying things like "the reason ds may appear inattentive in this situation is that his DCD is causing him to (xyz)". Follow with details of how the DCD is impacting the situation.

I will also add that in elementary school ds was extremely disorganized, and much of that looked like ADHD (as well as tuning out when he was bored and tuning out when he was given writing assignments simply because he didn't know what to do). I feel strongly (and so did his neurospych) that the disorganization was related to his DCD. It was a larger "problem" for his teachers than his writing challenges or anything else, possibly because it was so easy to see and so easy to perceive as an attention issue. When he was first struggling in school with writing, and we were trying to figure out what was up, his teachers would often deny there was an issue but would immediately launch into talking about how disorganized he was, and organization goals were written into his IEP without us (parents) requesting it. He most absolutely was (and still is but to a much lesser extent) challenged by organization.

This is one example that comes to mind - I don't know if it would help in thinking through what is going on with your ds, but it helped me to have a specific picture of what was happening in the classroom at the time the issue was happening each day. My ds had huge challenges getting his homework turned in in 4/5th grade. I made sure that I knew each night what he needed to complete and hand in the next day, and I made sure he did it (this wasn't really an issue - he wanted to do his homework). I made sure it went into the top pocket in his backpack each morning and I made sure that backpack was on his back as he got out of the car and walked into school each day. I also reminded him as he got out of the car to turn in his homework. It made it into the "in" basket *maybe* 20% of the time. His teachers thought they had the situation set up in a rote way such that he should be able to get it turned in - there was a "homework in" basket on the counter next to the classroom door and kids were supposed to say hi to there teacher at the door, put their homework sheet in the basket, and then take off their coats at their cubbies which were inside the classroom. So the teacher saw a well-organized situation with a linear task1-task2-task3 expectation. What the teacher didn't see was that the lights in her classroom were kept on an extremely low setting so it was relatively dark in the area, the basket was semi-high up compared to my ds' height so it wasn't directly in his line of vision, kids had to line up and wait for the classroom door to open on many mornings and even when they didn't, there were almost always multiple kids trying to get into the classroom and tripping over each other as they went through the door - not a huge issue for a coordinated kid but for a kid with coordination challenges it meant a lot of focus and concentration was going into just staying upright and getting into the classroom in one piece. He was also thinking about how to go through the process of taking off his coat and hanging it up, because that wasn't automatic for him then, he had to consciously think it through. The lack of typical development of automaticity that comes with DCD also came into play here - a neurotypical kid would develop an automatic response to come through the door and put the homework in the basket early on but for ds with DCD it would - without all the other darkness and craziness and thinking about getting his coat off - still have taken him probably several months for that one action to become "automatic". It didn't help that homework was not given out daily or on a turn-in-on-same-day-each week schedule. Some days he had homework to turn in, other days there was none. It also didn't help at all that the teacher never specifically let either ds or parents know that the homework wasn't making it into the basket until weeks later.

The thing that ultimately worked for ds to get his homework turned in daily was being in a math class in 6th grade with a teacher who had a very regimented routine around homework - it was given every day, expected to be handed in the next day, the assignment was written on the board, all kids were reminded at the beginning of class that it needed to be turned in before class started, the teacher checked before class was over and any child who hadn't turned in their homework received a reminder slip of paper that parents had to sign and they had to bring the homework and paper in the next day. If it didn't show up the next day, the teacher called the parent. Being a year older may have helped too - as ds has gone through middle school it's become apparent to me that the combination of giving him very clear structure around things like this, repeat-repeat-repeat way beyond neurotypical expectations, and the self-awareness that comes with maturity all have played together in helping ds overcome many of his organizational challenges.

I also just have to put it out there - the math teacher with all the structured and repeated routine also had very bright lighting in her classroom DS has just this year started to realize light actually impacts his ability to stay on track and he specifically makes sure his area he's working in at home is bright and well-lit.

Anyway, I'm sorry about the rambling - I just offered that up as an example of how really understanding both the environment in the classroom and the specifics of a disability are important in assessing what is going on in the classroom.



This might very well be the talk in the teacher's lounge, or it might not - but I think that it's not a bad thing to suspect that it is simply because it *might* be happening. Whether it is or isn't happening, the action you need to take to get appropriate accommodations in place is the same - understand what is happening in the classroom and think through how to solve it within the understanding of your ds' disability. The teachers and school staff aren't going to be the experts on EDS or DCD whether or not they believe that's behind the challenges or they suspect ADHD - you need to bring that expertise to them (which I know you're doing :)), and you'll need to keep at it. They won't just "get it" overnight, but you just have to keep plugging away at thinking through each situation in light of the disability, explaining the impact (again and again and again if necessary). Hopefully eventually the focus of the school staff will also turn a bit toward looking with the EDS and DCD in mind rather than automatically making the leap to attention and ADHD.

polarbear

Yeah, but the computer part of vision therapy *is* really hard work and excruciating and a lot different from looking at a screen to do ixl or play a regular computer game - if two eyes aren't working for those things, one eye can take over. The VT stuff is requiring both eyes to focus together.

BUT - you already know that I'm just pointing out that for folks who might not be familiar with it

polarbear

This is an important distinction. I'd also add that it wouldn't hurt when organizational (or attention) challenges are brought up to ask what is typical for his age/grade. That was something that was often used by the school as a reason for *not* providing help with us when we were looking for help - but it is something that might be important to keep in mind and use when advocating for understanding when the school is implying behaviors are an issue. Most kids who are your ds' age are not inherently organized and with organization even nt kids are going to "get it" at different developmental stages.

polarbear

Just a thought - the school staff may feel this way because they may have more kids with needs for accommodations etc than they can handle - I feel that was part of the issue with our ds' elementary school. Your earlier post about the things that school staff have said to your ds also sound like a school that is not being led with a spirit of inclusion and understanding (in general). Those two factors combined can make it a really tough situation to successfully advocate through for any parent and child with special needs.

Scribing is not an easy accommodation to deliver because it takes one-on-one time from a staff member. While I would continue to push for the accommodations your ds has in his IEP to be actually used (including the scribing) I'd also start looking toward moving him into accommodations that require less staff support. We had our ds typing on an alphasmart by 3rd grade, and I think it would have worked in even 1st or 2nd if we'd realized he needed it. Learning touch-typing wasn't necessary - just letting a student hunt and peck and figure out their own system will typically give a dysgraphic student a much faster "writing" speed than handwriting, even if the typing is very slow. I can't remember all the details of the EDS, but with our ds' DCD, typing isn't the overall wonderful solution it is for a lot of dysgraphic students because his fine motor skills also impact his typing - but fwiw, he types without wrist pain and slow as it is, it's still faster than handwriting because he doesn't have to remember how to form the letters each time he writes them.

polarbear

Hello everyone - please do not advise on taking meds on this forum. We have no way of knowing if those who do so are licensed to give such advice. Thank you!

Mark