Gifted Issues Discussion homepage Forums Twice Exceptional Assistive Technology Evaluation

Pemb, you don't have to solve all the problems at once. (One can't, in fact.) Do undertake strategic small actions cheerfully over a long time and you will build something remarkable with your DD. Even 5 min. a day can yield rewards...

DeeDee

I got a recommendation from this board for Nessie Fingers, a typing program from the UK. It's really terrific! My son has been amused that they call the letter Z, "Zed."

Update: I just got a call from "K", the really good OT doing DD's AT evaluation. As it turns out the day she was supposed to observe DD Hurricane Sandy hit so school was closed for 4 days. Over the next few weeks we had several scheduled days off, a snow day and week of half days for teacher conferences so her eval didn't get started any earlier. Tomorrow should be the last day. At least it's been done, though, and by a really good evaluator. Apparently she is not a part time employee - she said she is only brought in by our district every 3-4 years. Ironically she is actually a professor of OT - dept chair at DH's university. In other words I think it was probably done right.

It looks like DD will be getting an iPad. It can do voice-to-text, text-to-voice, audio books with the text, introduce keyboarding, has math apps, etc. "K" recognized that handwriting is really not going to be DD's mode of expression (yeah!). It looks like the next couple of years we will be working towards keyboarding short answer/fill in the blanks and by middle school we will focus more on voice-to-text options. She is also going to look at having sensory integration and endurance screenings done and will be bringing in some lighting options that may help with the fluorescent lighting issues in the classroom. All in all a good set of developments.

We have to figure out how to introduce this in the classroom setting. DD WILL stand out as different - not a good thing. Hopefully it will have enough of a cool factor, though, that it can be a "good" standing out. We talked about the difference between standing out as "different" rather than "weak" or "worse" or "stupid", etc. I mentioned that it will be important to have the issue presented to the other kids in the classroom in the right way. Anyone have experience with this that can be helpful? A couple of weeks ago DD's para was out and the class had a written test. (2nd grade having a written test on community and government - crazy...) Rather than send DD to the resource room the teacher read DD's test aloud to her in front of the whole class. Apparently everyone then noticed that DD's test paper was different (multiple choice rather than fill-in-the-blank) and I had to answer a whole bunch of questions about her disabilities and why things are different for her. I want to avoid a repeat of this if at all possible.

We discussed that DD's profile is unique. "K" was clear in mentioning that it is not just her deficits that are striking but also her areas of strength. It was nice to hear but also reinforced that gut feeling I have that the district is just not going to get it. While I am grateful to have this eval and to have an evaluator who gets it I am once again struck by just how tough this is going to be. I really need to hear some BTDT stories with happy endings. Kids who were so far behind the 8 ball in the early grades but who hit their stride with the help of AT. Please. I really need to hear some of these. (Make 'em up if you have to )

Thanks.

Pemberley, it wasn't AT for my kid's particular needs, but it was sustained advocacy, educating the school to be partners with us, outside therapy well-chosen and well-executed, and time and growth. I could not have imagined five years ago how far he would come by the end of elementary.

Hang in there, do your best for your DD, and see how she blooms. She will always appreciate what you are doing to help her succeed.

DeeDee

I have advocated until I am blue in the face and know that it has been effective. I just don't know if that is enough. At this point our district has thrown literally everything they have at her - AT is the last piece of the puzzle. DD now has a para, tons of pull-out and support for her anxiety. They paid for her neuropsych and psych evals and even for the evaluators to come to an IEP meeting to educate the team on her needs. There is nothing more they can do to support her - in terms of services anyway. We are doing all of this with a principal who has been antagonistic, a teacher (hand picked by that principal) who just doesn't get it and who has made clear that she will not alter *anything* in her classroom without being directly ordered to do so and a district that, in the words of our consultant, is "scared s***less" of me. She has twice daily enrichment breaks which is the only real support for her giftedness, and no it is not enough. She is listening to high school level texts twice a day but is in a first grade level reading group. No one discusses her high level texts with her and people continue to comment on how amazing her insights are. In other words the giftedness is being totally overshadowed by the disabilities. Totally.

My gut tells me that if done correctly the AT part could conceivable make this work. I am totally non tech savvy so I don't know enough about it to be able to really know how it should work, what to advocate for or to know if they are supporting her appropriately. The classroom teacher is basically useless - when left to her own interpretation she doesn't modify, accommodate or support DD in any way. When the para was out sick she totally held DD out to dry. She drew attention to her disabilities in front of the class, triggered her school anxiety and totally set her up to fail by using "whole class instruction" without modifying tasks in any way to make them accessible for DD. If the AT can be done correctly I am hoping that DD can develop a level of independence that will mean that "luck of the draw" won't be a part of this. I am just not feeling all that confident about that right now.

This has been a long and difficult road and I don't know how much more I can advocate for. No one has given me any reason to believe her problems aren't overwhelming and that takes a toll. The most positive statements I have received have been the former Director of Special Services saying "She WILL learn to decode eventually - it will take longer than other kids but she will get there." The neuropsych saying "Her dysgraphia isn't the worst I've seen" and the AT evaluator saying "She has a lot of challenges but she is so lucky to be born now when we have so much technology to help." Her psychologist has said that Harvard and Yale are filled with kids like DD but no one else has said anything to indicate that they believe her strength will win out. I really don't know if the district can meet her needs. I think they want to but they have not seen this before. With the actions of the teacher and the principal I just don't know how this can work.

My gut tells me that the 2E school I found in New York may be necessary even if it means totally disrupting our family. I really need to hear from people who have had their situations work out in their home districts. I know advocacy is key and so is a commitment from the district. I am just not sure if that will be enough though...

This sort of thing goes by baby steps; you can't see now how it will turn out.

We stayed put (despite my urge to pick up my kid and run); it took a few years to really get things put together flawlessly, but thanks to long efforts we now have a school that is a pleasure to be in, that is 100% supportive of DS. From 3rd grade on, things have been awesome, not least because of our advocacy from K-2.

Can you have your advocate start sussing out now what teachers are available in the next grade, for next year? Observing them and gathering scuttlebutt about them, and being in conversation with the district people about what isn't working this year? I know the principal has the most say about classroom placement, but that seems a key part that would make your DD's life better. (I am scandalized about the current teacher; no child should have to suffer that. And mine did in 2nd grade, too, before the principal understood what was needed.) Teacher selection does not have to be luck of the draw; our advocate has always worked it out with the school, because for a kid with special needs, a teacher who is unwilling to help can be truly devastating.

What that teacher is doing to your DD is probably legally actionable; it's okay for your advocate to keep working on that with the district people, keeping pressure on the principal to mend the school's ways. I'd be disinclined to let it go on. Is there a better teacher in that grade she could switch to?


Our experience was that way too in the early grades. We had to get DS functioning at school first; THEN he could fly. From 3rd on his gifts have been more and more recognized, and his problems growing steadily less. This is partly because we worked so hard on fixing problems in those early years, and partly because it is easier to shine in later grades, where it's not just reading mechanics and basic arithmetic that's being taught.

I thought of it as DS's alternative curriculum. While all the other kids were learning basic academic skills my DS already had, he was learning the social skills and self-regulation that would allow him to participate. For your DD it may well be that she's going to spend some time mastering the AT and learning to manage her own anxiety before she can fully show what she knows; but once she has it mastered, there will be no stopping her. Give her time to master her own curriculum.


All good. And your DD has a very supportive family, which makes a huuuuge difference.


Can I recommend that you limit your worrying to the next 5 years? Because you can't see past that horizon. I believe that you should absolutely plan around the problems you can see now, and work as hard as you can on solving them with an eye to what lies ahead in the near term, but don't worry about Yale yet, because you can't see yet how far your DD will improve by then-- it's too far.


I think you're not done yet; if you can get a great classroom teacher in place for next year, it may well be worth staying. If not, you'll have to decide how many years you're willing to have your family apart or hugely inconvenienced. That's a tough one. For us, the right thing was to stay and keep working on it; that may not be the right thing for you.

You are doing a great job. Do remember to breathe sometimes. That's hard too, isn't it.
DeeDee

ETA: does your advocate know of another local option that would be better for your DD? Even within a district, schools vary widely in their capacity to teach kids with disabilities. It might not be the binary "here vs. New York" but a matter of finding a local treasure and making the case for an out of district placement at district's expense. You certainly have enough evidence to make the case that the district has failed your DD and they should pay for the alternative.

I'm glad you heard back from the AT evaluator Pemberley - frustrating as it all is, looking in from the outside, I see a *lot* of progress here... but I know it's really tough to see it from the inside trenches.

There's a lot to reply to in your update and the following posts, so I'm going to take it piecemeal... which means I might not get to everything right away, but here goes!


As DeeDee and MON have mentioned, there is so much more than just AT, and this is a journey. BUT since you asked for happy endings with AT, I'll share our AT experience because I do believe that although it's just one piece of the puzzle, and we're nowhere near any "end" of anything, AT has made an enormously positive difference in my ds' life. For all the work in the world he's put into learning how to write and I've put into advocating, he would *not* be able to write today and would never have learned how to write (I'm referring to written expression here, not dysgraphia) IF he had no AT available to accommodate for his dysgraphia.

Note: I'll quote our school district's AT rep here.. sorta.. keep in mind that AT isn't limited to high-tech computer solutions, but can include low tech accommodations such as scribing or a slanted noteboard or whatever. In our ds' case, I still scribe for him occasionally at home.

Back to the high-tech type AT: the tools that ds has used have changed over the years (alphasmart - laptop - iPad) as well as the types of software (first he learned to type, then he added word prediction, then he later stopped using word prediction and moved more to voice-to-text etc). But it's much easier now that he's in middle school and has several years of AT under his belt to look back at where he was and realize that the AT he has used has made a HUGE difference in opening up his ability to access his education.

polarbear, part 1

ps - as an example of how far behind in the early grades ds was in written expression.. here are a few examples:

K-1 - no way to tell because he tore all of his papers apart, crumpled them up, threw them across the room and then stomped out of the room screaming when he had homework. On a good day. On a not-so-good day he stared at the paper and said he didn't know what to do for 30 minutes first, before he tore up the paper etc. Honestly, it was so much better when he just started out with the tearing up of the paper so we could move on quicker than when he sunk 30 minutes of staring into the homework first. I don't think he finished many, if any, homework assignments in K-1... and this was easy math etc - things we *knew* he should be able to easily do.

2nd grade - he didn't produce *any* written work at all until his teacher sat down next to him, and I suspect, bullied it out of him the week before his first parent/teacher conference. The rest of the year went downhill from there.

4th grade - the school gave him the TOWL (Test of Written Language) as part of his IEP eligibility review. The test includes a picture which the student is supposed to look at and then write a story about. DS was given the test twice, and was not able to write down the minimum required amount of words to have the test *scored* (I don't know how many he got down, the test requires 20, I suspect he had zero)... the school psych had never seen a kid with such a challenge before and was convinced he was just not cooperating, so he gave him an alternative test aimed at testing the same written expression skills that was able to be scored... and ds was significantly behind his age-level and grade-level peers.

5th grade - DS continued to be way way waaaaay behind and unable to generate written expression, even with AT. As an example of where he was relative to his peers in 5th grade - his class had writing workshop everyday. There were a large number of different genres of writing, most kids were producing 5 sentence 2-5 paragraph pieces of work consistently. DS was not producing any written work independently except for one very specific type of assignment. It was a repeated assignment - every Monday morning the students had to, first thing, write a one-paragraph summary of what they did over the weekend. The paragraph had to have 2-3 sentences minimum. DS was able to write that paragraph... because... he spent every waking hour of his weekend focused on making sure he did one thing to have that one thing to put in is Monday morning message. He wrote the same intro every time: "I had a good weekend." Then he wrote a sentence like "I went to see Up"... or whatever. You know, I'm sitting here starting to cry right now remembering how much work it took one 10 year old kid to produce that one paragraph and knowing how badly he wanted to be able to do well in school and also how badly he just wished he never had to go to school.

That same kid still struggles with written expression... but this past weekend he wrote a 2-page myth an a 4-page mystery. It wasn't easy, but WOW he's come a long long looooong way from where he was just last year, and two years ago (5th grade) and so many years ago when he was 6 and stomping off to his room with his crumpled up homework papers flung everywhere.

More importantly, he's happy - REALLY happy! He loves school now (not writing, he's never going to love that) but he loves his friends, he likes his teachers, he's learning cool things in math, science, social studies. He's subject accelerated in math, he's in a school that is purposely academically challenging across the board, he's got teachers who push him to do more, he's in school with other gifted kids. He after schools through CTY and loves it. He's not just happy, he's soaring.

My life is much better now too - I still have to advocate, but not as much as early on. I still have disagreements with teachers, but I know my ds even better now than I did then, I know more about his disabilities and I also know a lot more about AT. Most importantly, I've grown in advocating, hopefully I'm better at it, and I've also seen that all that heartache and hard work did get us somewhere. Somewhwere good!

polarbear, part 2

I'm a big believer in following your gut instincts.. but I would also be very wary of uprooting my family for a school that I haven't had a child enrolled in and experienced first hand. I think that the school you're referring to in NYC is a school I've read about online, and it sounds great, but what a school is advertised as and how it plays out for any one individual child can be two wildly different experiences. I've found that even when I've had good feelings one way or another about local schools based on feedback I've received from other parents... the actual "how" of how the schools have worked out for my kids can be very different (not just for 2e ds, but for my dds too).

polarbear

OK, me again - sorry for the scattered (and many) responses.... a few other thoughts came to mind.

First, re the gifted - I think somewhere above you worried about how to nurture the gifted and noted what most of us parents of 2e kids have experienced: the first years of elementary school, in particular, are very focused on remediating and accommodating and finding work-arounds for weaknesses... and it can feel like the gifted side of our 2e kids is completely ignored and we worry that they are missing out on opportunities and growth because of that. From my perspective, it was so *very* worth the effort to focus on the challenges at first - my ds really needed that focus not only to give him the skills he needed to keep up with his education but also because it was a key component of building his self-esteem. Yes, it's true he missed out on some opportunities for acceleration and enrichment, and yes, by the time he was in 5th grade he was complaining like crazy about how boring everything *except* his area of challenge was in school. The cool thing is, since we spent that time, worked through the AT issues, tutored/etc to make sure we were filling in the weak gaps... ds was able to accelerate when he'd made enough progress that the challenges weren't holding him back... and then he was able to *fully* participate in advanced academics in the areas he really cares about.

One other neat thing along the way - when you research gifted issues and hang out on forums like this etc (or attend gifted parent meetings in our school district...)... it's easy to feel like everyone else is so focused on achievement achievement acheivement, particularly in the early grades, plus (and my experience may be unlike any other parents here).. but fwiw, there were a lot of parents around living vicariously through their kids and hence a lot of uber-focus on *my child MUST do this* or they will never get into Harvard or whatever. FWIW, my ds didn't have access to much in the way of gifted programming in elementary school due to focus on his weaknesses... but please know that now that he's in middle school he's doing so very very well on the talent search tests and getting great grades in tough courses and actually being able show his knowledge plus having opportunities to be in advanced programs. Plus he's in classes with teachers who are trained in those subjects (ie, math isn't taught by a general ed teacher, it's taught by a person who has some experience in math) - hence his teachers are able to appreciate his insight and abilities in a way that wasn't going to happen in elementary school. SO...I think he landed in pretty much the same place academically in middle school that he would have landed anyway had he had no 2e and gone through the traditional highly gifted program in our school district. Maybe we landed in a better place because we weren't so caught up in only pushing for gifted programs and feeling like that was the thing that mattered over all else.

Re the school in NYC, or any school anywhere - I mentioned how each school is different for each child... it's also different for the parent advocating for each child. AND I'd reiterate Mon's point about looking at the financial solvency of the school - private schools can struggle tremendously to stay alive and you'd never know it looking in from the outside. I've been involved with three different private schools which have had significant financial issues that weren't exactly publicized but no way would I have picked up and moved to have my child attend them had I known those financials. I don't want to go into details on the list but can pm you if you'd like them. We've also had one very good private LD school in our area that failed because of a combination of finances and (I think, or at least I've heard) differences in vision among the key backers of the school.

Gotta run, I hope some of my rambling helped!

polarbear

Pemberley

I would second or third DeeDee's point about the teacher (I think it was DeeDee, these posts are long ) I am almost embarrassed to relate my DS's situation because it so opposite to yours, but the basic difference once you get past the delays in getting what your DD needs is the teacher and the principal. You can't do anything about the principal but I would push regarding the teacher. DS is in 1st in an accelerated gifted school, where his inability to write at grade level let alone gifted level is stark. I just got an email from the teacher saying she and the OT want him to start keyboarding on the iPad and they will be setting up a system of what work he will write and what he will type. Based on stuff seen here I was planning to start advocating for this prior to the testing and increased writing in 3rd and 4th and here the teacher is taking the intiative and saying lets start now. And they did it specifically to get his disability out of his way in terms of expressing himself. This teacher is not just hostile to her disbilities but also to her accommodations, that just can't be tolerated. The teacher you are dealing with is a problem on so many levels but to not even recognize and provide accommodation when the para is out, really needs to be addressed.

I hope diction really works out, a member of my family swears by it, but it doesn't work for DS - it can't understand him! He of course loves using the voice recognition for dictionary.com because it comes up with such strange things based on what it thinks he said!!

DeHe