Gifted Issues Discussion homepage Forums Twice Exceptional confused and wondering what to do now?

So, I had my child evaled and tested by a team of psychologists (one main one two of her minions assisted) at the children's hospital. When he was evaled and tested we did not know he had the vision issue. We were also made to wait for about an ahour and half b/c the main tester was late. We were given one short break amidst hours of testing during which DS6 ate a pastry and that was it (I think they were pushing to get done b/c they started late). I am unhappy with the eval and testing. First, the circumstances of waiting and lack of breaking the test up with breaks and some opportunity to get food), etc. The eval was weird and just not well-done imo (that's whole 'nother story). And of course he bombed the visual domain of the WISC b/c his eyes are intermittently crossing which we didn't knwo at the time. At the feedback, session I brought up that after watching the test I think something is wrng with DS' vision (or he has an LD) - they acted like I was a bit nutty (not sure why - I thought it was really obvious he couldn't see right!) So, of course I pursue the vision issue (and the LD issue) and we find, lo and behold, DS has the vision issue (which was affecting so much - his performance on the tests, his behavior at school, resistance to close-work tasks, etc). Still exploring LD issue. DS is now getting vision therapy and OT to help with that. Anyway, I want a re-eval and retesting done next year - after vision therapy, etc. And I want it done better (breaks, his hypotonia more accomodated for by giving breaks etc) and not being made to wait for 90 minutes for the test to even start.

How do I get this accomplished? When I first contacted "the team" I was told no he can't be re-evaled in a year b/c you usually only get re-evals every three years or so. I think I was told that that the main reason for that was that insurances won;t pay for another eval in a year unless "someting has changed wartrnating the re-eval." I contacted "the team" again for firmly this time and twith the vision diagnosis documetned and argued more strenuously for a re-eval in the spring. No one responded to me, No one.

Maybe I am going about this wrong? Am I missing soemthing? A step? I guess I am assuming that "the team" needs to make a finding that "something has changed warranting a re-test/eval" in order to get insurance to agree to payment and then we re-test and re-eval. But I don't know! I have no idea what I am doing or what I am suppose to be doing. And "the team" seems to be done with me. SHould I got to a different hospital? I could go to CHOP (children's hospital of Philadelphia)... I am thinking maybe I go there, see a new psych, giev that psych thetest and eval, give that psych the "new info" and get that hospital to request that ins. pay for a new eval and test in spring?

ANyone know?

marytheres, can you remind us why your child had the first round of testing? Were you wondering about possible challenges, was it for school placement, or was it for admission to a gifted program?

Unless I was trying to get qualifying scores for a program, if it were me, I'd wait on further testing until after your ds has been through his VT and OT and he's had a chance to make up in any areas where he may have fallen back due to the vision challenges (for instance, my dd who had VT made incredible progress in reading once she had been through a few months of VT, and I don't think she stopped really making those intermediate gains (catching up to where she would have been anyway) for probably a full year after she'd completed VT - but she may have been more impacted by vision challenges than your ds.

I also wouldn't want to go back to the same place you've been to based on the concerns you've had. While your ds is going through VT/OT, you can network around and try to find a recommendation for a good pediatric neuropsychologist in your area. If they aren't covered by your insurance, you've got some time to try to figure out if there's a way to convince the insurance to pay for an out-of-network provider.

I know it's really tempting to want to have testing re-done right away when you've found a challenge like vision where it's a) highly impacted part of the original testing and b) it's highly correctable. I really wished I could have had my dd re-tested with the WISC after VT for a direct comparison, but we didn't have a compelling reason to retest other than for vision, and we didn't have a need for IQ testing for school etc, so we didn't retest at the time. She has had an IQ test since then, due to other challenges she's had at school. The second test was the WJ-III Test of Cognitive Abilities, so we don't have an apples-to-apples comparison, but fwiw as closely as I can compare, it appears that the original tests that were so impacted on the WISC (can't remember what they were now and I'm not at home so I can't check - but I think they were the same tests that were low for your ds) - came up in-line with her other ability subtest scores. Outside those two subtests, nothing else really changed much.

Gotta run, hope that helped a bit!

polarbear

eta - btw, I would continue with exploring the LD issue. I don't remember what exactly that potential issue was - could you remind me? That might make a difference in how I answered the question above!

Hi Polarbear - thanks for responding and helping me out.

I got him tested for a few reasons. First, I highly suspected he is gifted and I believe that causes some trouble at school. He questions. He wants logically thought out reasons for things (not just cliches dismissing him like because "I said so" or "you get what you get and you don't get upset", etc), he is extremely articlate and speaks like an adult - he has an incredible vocabularly and command of the english language. (Everyone just everyone comments on that). He complains he is bored at school and he knows the stuff already, etc. He is highly creative, etc. He just thinks differently (not only smart but creatively). I got him "evaluated" because he was having so much anxiety and ocd symptoms at achool (kindergarten). So it all kind of all went together. But I was excited about him gettign the WISC as part of the eval b/c I suspect giftedness and I also suspected either dylexia or dysgraphia. I was led to believe by his therapist that the WISC would show that clearly (confirm the existence or non-exitence of an LD) but now I realize that further testing is needed for that. But at the time I thought the WISC would tell us that pretty clearly.

The testing was really really helpful in that it did help me to really question his vision - I could really see that something is wrong with his vision just by watching him do the test. It also helped me realize that where his weaknesses are and why he has certain somewhat problematic (imo) behaviors (ie his executive finctioning - the low processing speed and working memory) So I know now to start working on that and hopefully get him better in that regard so that he can be a bit more successful at school - not as spacey.

However, I still feel that I don't have a "good" picture of him - his abilites, his issues, etc. I feel that I want to see what he is really capable of (and what his struggles are) and what diagnosis stay/go away whatever - once he can see properly! I think once he can see properly his anxiety will even begin to resolve and he'll be capable of more (b/c the anxiety can really get in his way). YKIM? (Am i making sense? LOL you can tell me if I sound wacky! just tell me somewhat nicel ) I just feel like we are now stuck with diagnosis, a relatively unfavorable eval/report (where they insinuate he could have ODD and/or PDD-NOS) and reltively unreliable test scores (because of his vision issues that we didn't know and because the testing circumstances were so bad). I don't mind an an eval and diagnosis and opinons/insinuations if they are accurate but I don't feel the report gives an accurate picture of him, his issues or his abilities at all. And now the school has this report (we needed to turn it over to get an IEP for his anxiety) and I am not comfortable with it. Does that make sense? I want be able to give them a better picture of him next year. And yes, I want a better report/eval and more accurate WISC scores (perhas higher if he is capable and I believe pretty strongly that he is) if he is to be considered for the gifted program.

I DO want to wait a year. I want to get the re-eval and re-test done in the spring of 2013 (a full year from the first eval and test). He should have several months (9) of vision therapy by then and occupational therapy under his belt by then. I think his ability to see will effect his behavior and his anxiety, which will in turn effect how he looks in a re-eval and how he tests. I will/should also know y then if he has a LD. I will also be better prepared. I had no idea they would subject him to hours of testing with no breaks, etc. This time I will try to get the test broken up inot maybe two days - or at least get more breaks built in, etc.

Also, next spring is when his school starts testing for gifted program. But I am nervous about the school testing him. They screen with the OlSat and then I think if you get a certain score on the Olsat they then test with WISC. I'd rather bypass all that with getting the private WISC (done during a private eval ) during which I get to see how he is acting/struggling (or not struggling) in the testing, I get to see how it is done, etc.

I should add that his kindergarten teacher also thinks he is amazing and he also suggested that DS is "gifted."

Anyway, it takes months to get an appoint for the eval and wisc testing. So I don't want to wait too long to get the ball rolling. I just need to know how to go about it, Yk? I was hoping/thinking the that once "the team" that tested him were made aware of his vision issues, etc they would be interested in re-evaluating/re-testing. I completely expected the docs to say something along the lines of, "Oh yes! we definitely see how that vision issue would mean the eval and test we did really isn't a very accurate picture and we would definitely want to see how he looks in an eval and and tests after the vision issue is resolved, etc. Okay, well, this is how we'll proceed to get it set up for him to be evaluated and tested again in April 2013." What I got instead was ignored.

I guess ultimatley it's not that big of a deal. I could just let the school test him in the spring of 2013, keep the report and dx we have now... keep getting him an IEP for the next two/three years based on a report I don't think is very accurate at all. Perhaps, at the end of the day it's "six of one, half dozen of the other" I don't know. I figured the team that eval'ed him would have guided me with regard to all of this but they seem to just not give me any credence and just want to ignore me.

This is exactly what I am suspecting (and hoping) will happen with my DS UNLESS there is something else at issue - LD, or anything! ADHD, etc... I just really think it would be a GREAT idea to look at him fully again after his vision issue is resolved to see what we're really dealing with (LD? ADHD? Anxiety?) because the visison issue causes so many symptoms that LOOK like those things it's had to tell right now what is really going on with him - if anything. For example, he has some attention issues but is that due to his vision deficiency? (could very well be!) or does he have ADHD? He seems to have dyslexia or dysgraphia to me (and his OT says she can see muy concern) but will those symptoms go away once his vision is better? Or does he have an LD?

Thanks so much for your help with this, polarbear. I really appreciate your taking the time that you have .... I don't know where else to ask about this stuff!

We had ds14 tested at age 6 at the request of the school. He was not settling down well into the classroom and was behind in reading. We had a reputable psychologist test him all in 1 day with all the subtests of the WISC-4. He also was given some achievement testing. He did ok but did not test gifted at that time. I think that a full day of testing for my 6 year old was too much. He did get an IEP for an LD in written expression and reading.

He was tested at age 8 1/2 with a subset of the WISC-4 (excluding WM and PS testing) and tested 99.6 GAI. We did a psycho-educational assessment, and found out that DS14 is dyslexic, CAPD and has ADD-I. All these issues make it really hard to concentrate for a full day.

I think that for a young kid with learning issues, a full day of testing is counter-productive. Your son sounds gifted to me. Can you find a tester who will do the testing over several sessions? I don't believe you can do a second WISC within 2 years, but you could get another IQ test done once the VT is complete.

Thanks so much DMA! Mostly eveyone that talks to him thinks he is gifted. Seriously. His kindergarten teacher as well as a few of the other teachers (specials teahcers like "art" "music" "computer" - his music teacher told me he is "brilliant". He has actually authored/written a sci fi book (that I got made into a real book for him at bookemon). It has 22 chapters and it is amazing. It's acutally online at Bookemon.com I will link it for you sometime. I typed it EXACTLY as he saidit. He would not let me edit it.

I agree with you completely about full day of testing for a 6 year old was too much... They had the audacity to make comments about it in the report - at how fatugues and antsy my son was becoming. Seriously? He's six! My DS also got achievement tests too. Add to the hours of exhausting testing that we had already waited over an hour to start, weren't given breaks and my DS has hypotonia and a vision decifict both of which cause much fatigue - it's amazing he scored like he did (GAI 121). He tanked the vision domain. of course. They said he tanked it b/c "he can't see things from other peoples' perspectives," which is sooooo far from the truth abotu my son. He tanked it b/c physically he can't see right!

Anyway, I know you can take the wisc a year later b/c both the "team" that tested him privately AND my school psych told me that. They said he can only be re-tested in a year not less. There must be at least a year between WISCs So that should not be an issue.

I just wanted to toss out there that the Neuro who evaluated my son strongly recommended he be brought back to be re-tested next year so that we can evaluate his progress. Of course, she was able to see my son's areas of difficulties and recommended specific therapies to help him. So we want to do follow-up testing as we go to validate the therapies are working.

I would personally seek out another person or facility to do the testing. I've only ever heard good things about CHOP, but I don't have any personal connection to their behavioral/mental health side of things (my good friends daughter gets treatment there for a kidney problem and severe allergies and they love the place.)

Although it might have been aggravating to see that in the report (and, trust me, I've seen some stuff written into my kids' reports that really ticked me off), I'd actually almost view it as a positive in this situation b/c it gives a good explanation for the reason the scores didn't come out where you'd expect them to be.

Good luck with getting him retested on a time frame you want and with someone who gets him better!