Well if anyone's interested...

[PeterPan]

We're going to the np today for the initial interview. Or rather I'm going. I'm a little concerned I won't know the things he wants to know or will forget important things, so I made some lists. I also made some videotape of us working together, since he would normally go to the school and do observations, talk with the teachers, etc.

 

I did a bit of digging with her non-fiction reading in a way I hadn't thought to before. I got out a stack of texts and non-fction sources at levels from 4th up through college and had her read. What I found was she can *decode* and read aloud any of it, literally any of it. But if it's 8th grade or up she just looks at me and goes "Huh?" and shuts down. She likes the CONTENT of the 11th grade level texts and keeps reading when I tell her she can stop. But she says she doesn't like the way it's written, blah blah. (Kinda hard for a textbook to compete with Tolkein, eh?) The college is too high and the 8th grade content is too low and seems incomplete to her, babyish. But literally when I had her reading the 8 steps to a lab in a Prentice Hall Physical Science book (an 8th gr text, right? only one year removed from her age grade) she could not comprehend them. There was a picture on the page showing the completed project. You were wrapping wire around an object, pulling out the object, making stands with clay and paperclips, blah blah. These were VERY SIMPLE sentences.

 

So then, I handed her a 4th gr level non-fiction book and she totally lit up, totally dropped the frustration thing, and started engaging. So I don't have a clue what that means. I pulled up the lexile indices on a couple of the books, but there didn't really seem to be a dramatic difference. The book she lit up on is a lexile 780 with large print, recommended for ages 9-11, looks like a 4th gr aimed book to me. The current series she's blowing through for fiction (pleasure reading) ranges from much lower to 860 (tops). Hakim (which she has never liked and went huh on) is 880.

 

Lexile index is a funny thing. On the website it said it looks at repetition of vocabulary and sentence length. I'm not sure I would have equated that 4th grade book (Festivals of the World: Italy) with Hakim, kwim? Hakim is pretty choppy though. I THINK the issue is what she can visualize and connect with. For instance in the BJU Life Science 7, there was poor comprehension (couldn't answer basic questions) after reading a two-page spread on endotherms and ectotherms. But when she read a page on learned behaviors in animals and how it translates to squirrels (something we have a lot of around here), so was fine. Normally she does visualize, which I think is why she likes fiction and comics so much. So basically there's no visualization, no comprehension of this upper stuff. And of course that explains why she won't read it.

 

I did pull some non-sense lists from online to have her read, and she did fine with most of the advanced list, missing just a couple. If you get the words longer you start to trip her up, but then the question is whether that's actually the decoding or the working memory that's the issue.

 

Now I'm going to throw this out. I fundamentally believe if I had taught her to read the traditional way (forced sounding out, traditional word family phonics) she would have been as bad a reader, or even a non-reader, like her father and others. The Eides, Shaywitz, etc. say that when you *remediate* these kids they still remain slow, poor readers. So to me the curiousity is that no one has compared outcomes in kids who clearly have these bents and genes but are taught FROM THE BEGINNING an OG way. (Wanna be in that control group that DIDN'T get the OG teaching? I think not, lol.) It seems to me the take, the way it lays out processing wires in the brain, is going to be very different (and substantially better) than in a student who was taught to process written language another way and then remediated.

 

Also, it seems to me the walls she's hitting, the patterns I'm seeing, are very similar to dh, even though she can decode. I'm just looking at her pleasure reading and the patterns (stretch for something hard that interests you, then go right back to something light). And, just as an aside, it continues to irk me that many dyslexia evaluation lists I see online include stuff that is VT and easily fixed.

 

So I don't have a CLUE what we're going to get told. That's not true. I mean I already know most of the alphabet soup labels (working memory, EF, pick your ADD/ADHD, SPD, low tone). I already know all that. But it doesn't explain to me why she can test age 30+ on passage comprehension on the WJIII (I kid you not!) but shy away from any age-appropriate non-fiction text. It doesn't explain why writing takes her SO LONG or why it wears her out so much. It doesn't explain her inability to understand someone with a foreign accent or to process a foreign language or retain vocabulary. I'm looking at getting her a different Bible, maybe an ESV, because I don't think she fundamentally understands the other versions. It's just a big mess of contradictions (tests well but something isn't right). I decided to do the testing now, because I don't feel like I can go into high school a year and a half from now without adequate information on how to proceed with her.

 

Well there you go. I thought someone might enjoy reading that and seeing what happens. I've been told recently my expectations are just unrealistic, and that that's the problem. I've pondered whether the comprehension thing is because I didn't make her do all those nasty workbook pages for the BJU reading (which she hated, both the reading text and the workbook, lol). I've had to ask whether she just appears weak in comparison to me, or whether she objectively has issues. So this is put up or shut up to me. I'm gonna pay the $1500, get the eval, and then we'll see if I was crazy or not. :)

 

(But I don't think I am, not with these test scores, not with the video footage I have of her working.)

[PeterPan]

Maybe working memory affects their ability to hold enough words in their head to comprehend longer sentences? Hmm.

[wapiti]

. 

 

[onaclairadeluna]

The Eides, Shaywitz, etc. say that when you *remediate* these kids they still remain slow, poor readers.

 

 

DS is a pretty slow reader (I would say maybe 30% slower than me. Not too bad) But he has excellent comprehension and reads at a very high level. So I don't think this is universally true.

 

Best of luck with this. I hope it goes well and you get some good information and helpful suggestions.

 

I've been told recently my expectations are just unrealistic, and that that's the problem.

 

If it goes against your mommy intuition, I would ignore this advice. I am a little irked on your behalf. Like we "cause" our kids problems. Sheesh. I work too hard to tell me that everything is all my fault, and I suspect you do too.

 

With a 2e kids it's pretty easy to have unrealistic expectations though. Like when my son could multiply 3 digit numbers in his head and I asked him to write 2+3=5 and he melted down in tears because concentrating on writing 5 he got confused and wrote 2+3=6 instead. So, my expectations really were unrealistic. But, you know, I didn't cause this.

 

So maybe unrealistic expectations but no no no no no no no, that is not the problem, it is the symptom of a greater problem. Don't ever let anyone say that YOU are the problem. You have potential to be the solution, just because you haven't found a perfect solution yet, does not mean that you are the problem. We live, we learn, we adjust. Stay strong and know that you are doing great work.

 

I hope you get answers and great advice. Let us know what you find out.

[merry gardens]

We're going to the np today for the initial interview. Or rather I'm going. ...Now I'm going to throw this out. I fundamentally believe if I had taught her to read the traditional way (forced sounding out, traditional word family phonics) she would have been as bad a reader, or even a non-reader, like her father and others. The Eides, Shaywitz, etc. say that when you *remediate* these kids they still remain slow, poor readers. So to me the curiousity is that no one has compared outcomes in kids who clearly have these bents and genes but are taught FROM THE BEGINNING an OG way. (Wanna be in that control group that DIDN'T get the OG teaching? I think not, lol.) It seems to me the take, the way it lays out processing wires in the brain, is going to be very different (and substantially better) than in a student who was taught to process written language another way and then remediated.

 

Also, it seems to me the walls she's hitting, the patterns I'm seeing, are very similar to dh, even though she can decode. I'm just looking at her pleasure reading and the patterns (stretch for something hard that interests you, then go right back to something light). And, just as an aside, it continues to irk me that many dyslexia evaluation lists I see online include stuff that is VT and easily fixed.

 

So I don't have a CLUE what we're going to get told. That's not true. I mean I already know most of the alphabet soup labels ...Well there you go. I thought someone might enjoy reading that and seeing what happens. I've been told recently my expectations are just unrealistic, and that that's the problem. I've pondered whether the comprehension thing is...

I'd love to read how this all tests out for your dd. I share your curiosity of how children with original wiring for dyslexia taught to read with O-G methods compare to if they were taught other ways then remediated. I share your frustrations with "tests" for dyslexia that measure things that can be remediated with other things like vt or LiPS. (ds has good phonemic awareness now--after two years with LiPS and Barton, plus more!)

 

Maybe we need better names for the troubles that linger once our children learn to read. Are the letters "PDRHMWD" taken yet? We can call it: Post Dyslexia Remediation Homeschooler's Maternal Worrying Disorder. Only homeschooled children who learned to read primarily via O-G style methods and whose worry-wart mothers worked hard on remediating their various others issues can get it. Treatment for PDRHMWD involves feeding their mother's chocolate.

Edited October 27, 2011 by merry gardens

[onaclairadeluna]

Treatment for PDRHMWD involves feeding their mothers chocolate.

 

:cheers2:

 

I love this.

[peacefully]

.

[PeterPan]

Maybe we need better names for the troubles that linger once our children learn to read. Are the letters "PDRHMWD" taken yet? We can call it: Post Dyslexia Remediation Homeschooler's Maternal Worrying Disorder. Only homeschooled children who learned to read primarily via O-G style methods and whose worry-wart mothers worked hard on remediating their various others issues can get it. Treatment for PDRHMWD involves feeding their mother's chocolate.

 

Oh Merry, that is SO funny!!!!!!!!!!!!!!!!!

[PeterPan]

Well I'm back. The man is very quiet, reserved, a leftie, and had insightful comments during the moments where I paused for air in my explanations. We go back in a few weeks to do the actual testing, two days, 6 hours. He's going to test of course her phonetic stuff, decoding, reading, writing, etc. So we'll see what happens. So far I'm pleased.

 

The one thing that cracked me up? I walk in there door and there's a COUCH. Like dude, a freudian, lie down and listen to your psychotheraist COUCH. Ok, it didn't have the scrolled up arm swirl, but I still thought it was hilarious. He sat opposite in a comfy club chair, and there was a coffee table between. (Good thing, because boy had I brought a lot of stuff to show him!) So I don't know what I expected, but that surprised me. And on his bookshelf he had a copy of "Smart but Scattered." So there you go. :)

[wapiti]

.

[PeterPan]

Hmmm, that's a good idea to record that results conference! That's a good question as to what his qualifications are. I actually landed on him when I found some pdf doctor referral lists for peds just by googling. After I saw his name enough, I figured out he and this other doc I was considering were probably the two big names in town for this. Then when I talked with them they had such a mutual love society going (I'd take my kids to him, vice versa, we went to the same school and will run the same tests, blah blah) that I figured I'd just use this guy and be done with it. He and the other option are both on the Central Ohio Dyslexia board, so I figured he'd be as likely to give helpful advice as anyone. http://colvinpsychology.com/bio.php There's his link, just in case you're curious. He has a proper demeanor and doesn't seem flapped by anything I tell him.

 

At this point, I'm just really glad I took the step. It made me feel better just to get it all out there and let someone ELSE try to sort it out, lol.

[Tiramisu]

Hmmm, that's a good idea to record that results conference! That's a good question as to what his qualifications are. I actually landed on him when I found some pdf doctor referral lists for peds just by googling. After I saw his name enough, I figured out he and this other doc I was considering were probably the two big names in town for this. Then when I talked with them they had such a mutual love society going (I'd take my kids to him, vice versa, we went to the same school and will run the same tests, blah blah) that I figured I'd just use this guy and be done with it. He and the other option are both on the Central Ohio Dyslexia board, so I figured he'd be as likely to give helpful advice as anyone. http://colvinpsychology.com/bio.php There's his link, just in case you're curious. He has a proper demeanor and doesn't seem flapped by anything I tell him.

 

At this point, I'm just really glad I took the step. It made me feel better just to get it all out there and let someone ELSE try to sort it out, lol.

 

Elizabeth, Thanks for letting us know what you're up to. I will be eagerly awaiting more posts on this thread.

 

I'm revisiting the central auditory processing possibility with one of mine. This is slamming me in the face everyday, and I no longer have any confidence that the testing done years ago was valid. This time I'm going to the audiology dept. of a children's hospital where I've had very good experiences. We'll have our appointment in a couple of weeks. Won't it be nice if we both get some helpful answers? :)

[PeterPan]

Well we'll see. I have this vague suspicion he's going to say to go get some more testing (speech, whatever, like you're saying). So we'll see. But it will at least be a start. How much does that CAPD testing run? Are some places better than others? What happens if you take a "normal" person in there? Is it one of those things where anyone would look bad and test as having problems? I'm just curious here.

[peacefully]

.

[PeterPan]

The CTOPP that he's going to do includes some of the language elements like rapid naming that an SLP would test, so I think there's going to be some overlap there. He didn't shove me out the door, but I had already gone over the one hour time slot he had for me and needed to wind down. I'm hoping some of the things I didn't mention are obvious from the videos I gave him. ;) Yes, because of everything you've said, I've wondered what he would suggest further. But really, I think more than knowing that an SLP or whatever *could* help with some of these issues, the issue is knowing WHICH SLP. So although I've felt a little antsy the last couple days and had ideas running through my mind, I've figured it's better just to be patient and wait it out.

 

You know what's weird is I had wanted testing on her years ago, like back when she was in K5 and 1st, just to see what I was dealing with (IQ, etc.), and I couldn't figure out who to go to. I wasn't in the right loops at that time. So it sort of skunks me, because a lot of what we've dealt with could have been identified a lot earlier if we had gotten that testing. It was expensive, and at the time I didn't know who to go to. I called and kept getting the "why would you bother, it's expensive" routine. So that's a bummer in retrospect. And it's hindsight like that making me increasingly pro-testing. My only consolation is that, if someone had told me years ago the things I now know are true, I wouldn't have believed them. I had to discover it for myself. :(

 

The other ornery thing that haunts me is that, for a while, I listened to the (well-intentioned) advice of someone (not on the boards) who told me not to pursue testing, that it would only lead to 20 diagnoses and a mental complex. Yup. As if the kids don't KNOW their own internal incongruities or differences from their peers (or that they identify with certain other peers that have labels) and feel that!! So this whole thing of not testing because your religion says the problems are made up and a result of bad parenting, or not testing because it will ruin your dc's sense of self-esteem, it's all so irksome. I only put that out there, because I'm guessing other people have had the same thing happen. And I admit, when she was 5 or 6 these labels would have felt out of the blue and like they were made up. And I did get lambasted by people as being a bad parent.

 

Oh well, water under the bridge! So how old was your ds when you did the first testing? Michele made the comment that she wishes she had tested her youngest at 5, and I've been chewing on that ever since. My ds has a fall birthday, so I was planning to call his school grade K5 when he is newly 6. He has these super-duper fine motor skills (he still wows people), but I just don't think the rest is going to be there. He may or may not turn out to have the dyslexia and other things. Sometimes he does funny things. He almost never turns if you call his name like to take a picture. And when you're there, in the moment, he comes across as just ornery. But he did it at Awana too, where he's in Cubbies. He's the youngest of the bunch, so I don't know what's normal to a newly 3 yo and what is indicative of problems. I'm just filing it away as a little red flag, because to me that's significant. It was crazy hair day so they were taking pics, and all the other kids turned to look at the camera, just not him.

 

Oh, so anyways, I was thinking I'd test him that summer before he turns 6, but I could test him earlier if it's reasonable. Our SLP is doing a test on him in November, I think it's called a VIMPAC. I'd have to check the letters. I'm not sure what it is.

 

I didn't go into this, but the NP asked some pretty interesting (at least to me) questions as I was going on about things. I showed him some of the worksheets I had her doing for LA this year. One is a Critical Thinking Press workbook called WordBenders aimed at 7-12th gr. It has a definition bank at the bottom and you morph words, leaving some the same and just changing one or two letters, to form the next word that hopefully matches up with the definitions in the bank. Sometimes she can get these, but usually I do it with her to nudge her into the ones she can't. So then he asked if she has a large vocabulary. I had never thought of it that way. I have a friend who's dd has a markedly large vocabulary, which definitely is not dd. So then he asked if it was just large words, which I also didn't have an answer for. It was one of those curiousities. But of course that's why we're there, to flesh out the things I wasn't catching!

 

And yes, I'm extremely hard to please. I wouldn't have proceeded on to the testing and would have canceled the other appointments if I hadn't been happy. Also, I was pretty blunt with him about my dd being a whole, amazing, and functional person in things other than academics and that I don't want her coming out feeling dissected or defective. I suggested to him I'd be Tiger Mom about that, hehe. He's not a cold or hard-hearted, but he's also not one of these warm-fuzzy gushing esteem-boosters either. To me he's just honest and right in the middle, which I can respect and work with.

 

Is it the norm for the np to talk with the dc as part of the wrap-up? I've seen online that some do. I don't recall that he said he was going to, so I was curious. I suppose in a way it's just as easy if he doesn't, because it takes the emphasis off the numbers (which she might find morbidly interesting) and leaves me as the parent to do the spin and interpretation. That's probably just as good.

 

Well I haven't even started filling out all that paperwork he gave me, mercy. I got sick with a bug (as in fever and chills and aching all over and the whole nine yards) after the appointment, and now dh is starting to get sick. Gotta get on that. I also keep trying to read DA but get distracted by wanting to reread the Sally Shaywitz book.

[peacefully]

.

[PeterPan]

That makes good sense to watch for compliance. That's perfect.

[Tiramisu]

Well we'll see. I have this vague suspicion he's going to say to go get some more testing (speech, whatever, like you're saying). So we'll see. But it will at least be a start. How much does that CAPD testing run? Are some places better than others? What happens if you take a "normal" person in there? Is it one of those things where anyone would look bad and test as having problems? I'm just curious here.

 

Right now, everything looks like it will be covered by insurance. I got a script and referral from our ped. Dd has to have a preliminary screening test. Only then can we go be scheduled for the real evaluation. The preliminary test will rule out any actual hearing problem. My understanding is that if they find a hearing problem they can't proceed with the CAPD evaluation. Also, they screen for behavioral issues that would interfere with the test and possibly invalidate the results. They already asked if dd had been diagnosed with ADHD, autism, and things like that.

 

Dd had a normal test before, at least the narrative report said everything was normal. So, yes, a normal person can go in there and do fine.

 

I just let it the possibility of CAPD go, even though I was extremely sure before the test that we were dealing with a CAP problem, after I got the report in the mail. When we met with the audiologist before the test, she said if it wasn't CAPD it was ADHD. She also said, you don't want a CAPD diagnosis. Now I wonder exactly where she was coming from and if something could have gone either way, normal or not, she decided to choose normal and tell us dd had no processing problem.

 

The thing is I've seen so much improvement in every other area, and I don't really see the things I used to think may have been ADHD. But I still see the auditory processing problems EVERY.DAY. Everyone that deals with her sees them. They create problems in her daily life, in her academic life.

 

A few weeks ago, I dug out the old report from five years ago and went through the numbers for the first time. I saw that while other tests were fine, one particular test had something out of range, even though the report said that test was normal. I looked up online what that test indicates, and it EXACTLY describes the problems dd is having.

 

I don't know if this can be remediated, but I'm hoping a diagnosis will help with possible accomodations in the future. I'm fairly confident that dd will do well in college because she should be able to do the work and she is responsible, but the auditory issue is a major handicap for her. The good thing is that she's started to realize it, and I've seen her go to her coop teachers to confirm details of instructions and assignments which were given verbally.

[merry gardens]

.... Does anyone know what an audiologist does after an evaluation? Do they provide therapy? I know some provide special headphones and hearing aids, but aside from that, I don't know what they do. I do know many audiologists refer to SLPs. ....

I look forward to learning as Elizabeth shares her experience with us too.

 

I wish I knew, but I don't exactly know what audiologist do after finding auditory processing problems. I can share our experience. In ds's case, it wasn't the audiologist who referred us to the slp--it was the slp who referred ds to the audiologist, to make sure there wasn't some underlying hearing problem. Maybe that's why the audiologist only basically tested tones--maybe he thought we had the other stuff already covered with the slp. (??maybe??) That audiologist didn't look further into auditory processing beyond what the slp who referred us had documented and didn't recommend anything else either--not even follow-up. The old report documented that my son heard tones fine and that he was going to start The Listening Program with the referring slp. That was about all.

 

Now, it's several years later. A vision therapist that we saw recently suggested ds might want to f/u with an audiologist. She read the old slp and audiology reports and after her testing, she spoke to a second audiologist about my son. Apparently, according the audiologist she spoke with, The Listening Program is somehow different program the listening therapy this other audiologist uses. From what I read of the program on the website, they look like they're based on similar research. I don't know if that's all that the second audiologist would suggest, but since the first audiologist didn't seem too concerned about my ds, I don't want to chase down ways to spend money we don't have.

 

Since then, I spoke with an expert on dyslexia about it who suggested that what I described (both vision and auditory) sounded like things that typically go along with dyslexia, and she said if I'm going to do further testing on ds, she recommended it be a neuro-psych evaluation. Now that Elizabeth decided to get an neuro-pysch consult, I'm curious what this neuro-psych will have to recommend for her dd.

[merry gardens]

...You know what's weird is I had wanted testing on her years ago, like back when she was in K5 and 1st, just to see what I was dealing with (IQ, etc.), and I couldn't figure out who to go to. I wasn't in the right loops at that time. So it sort of skunks me, because a lot of what we've dealt with could have been identified a lot earlier if we had gotten that testing. It was expensive, and at the time I didn't know who to go to. I called and kept getting the "why would you bother, it's expensive" routine. So that's a bummer in retrospect. And it's hindsight like that making me increasingly pro-testing. My only consolation is that, if someone had told me years ago the things I now know are true, I wouldn't have believed them. I had to discover it for myself. :(

....

:grouphug:

I had my reply screen open forever and didn't see this. Elizabeth, don't beat yourself up over the lack of testing earlier! I tried early testing with my ds, starting before his fifth birthday with a speech evaluation through the schools. In hindsight, what I saw was early signs of dyslexia, and the schools didn't see it, nor the next few people I tried either. The second speech therapist at age 6 told me she was wondering why I had brought ds to see her (basically seeming to imply she thought she was dealing with a crazy homeschool tiger mom), until she got to the phonological processing testing part of the evaluation. That slp found it but didn't really know how to remediate it. (edit to add: When he was nearing seven, I began suspecting dyslexia. I spoke with someone who tutors for dyslexia in my area and who told me ds was too young for testing. He suggested we wait. I tried methods for dyslexia remediation that aren't truly O-G methods.) By the time ds was still having reading problems at age eight, I took matters into my own hands, researched dyslexia on the internet, found Barton, then LiPS (because he failed the Barton screen), then eventually I found all of you lovely ladies over here on WTM special needs forum. :grouphug:

 

I was thrilled to find this forum. I'll admit that part of me was very embarrassed to take an eight year old homeschooled child who basically couldn't read in for testing; I was afraid that they were going to blame me and our homeschooling. I was even more afraid that they wouldn't help my son, because no one had really hadn't helped him earlier when I took him for testing. He looks and acts like a very "normal" child. Elizabeth, if you had pursued testing on your dd earlier, there's no guarantee that you would have found the right person. I didn't--or maybe I did. Maybe you really found the exactly right person to help with your dd's struggles--and maybe she's been staring you back in the mirror all along.

Edited October 29, 2011 by merry gardens

[PeterPan]

I'm not really beating myself up, honest, but it is one of those things I wondered about. I think you're right though that if I HAD done the testing early on, things would have been so borderline and not as apparent. I wouldn't have even known what to say, and the way you fill out those forms and the things you say definitely steer them toward certain things for testing. There was a lot she did that, at the time, seemed generally within the realm of normal behavior for her age. It's only when the stuff kept going on at age 8, 9, 10, 11 that you realized it was an issue. And yes, the wrong person evaluating her and missing something at that age would have totally steered me away from pursuing it again later.

 

On the ADHD vs. CAPD thing, that's interesting. I know someone whose dc was originally diagnosed ADHD (and we're talking it was pretty clear, wowsers) but they *missed* the CAPD. Took a couple more years of pursuing stuff, new evaluators, and they finally got it. So I'm not sure the ADHD *excludes* CAPD. It seems like, from what I'm reading, some of these diagnoses sort of include another one, meaning they don't go ahead and label the additional one. But I could be in left field on that.

 

And Merry, I was very nervous about doing the neuropsych thing. I think it was the cost; it definitely wasn't the person himself. Now that I have found one I like and feel confident in (or hopeful about?), he's the nicest, most easy-going thing. Well not that easy-going, but he doesn't give you the worried mother routine or anything like that. I mean I called him up and said my dd who can read a LoTR volume a night is dyslexic and he didn't even blink an eye. He just took me totally at face value and listened and listened and listened. And I'm saying all this, because I feel so much better just having gotten all this OFF MY CHEST to somebody. I mean I've blathered here, but sometimes you just need to tell somebody official and see if they can do something about it. So yes, I'd say schedule the neuropsych. This one didn't have a horrendous wait, but the one you find might. It's cathartic, stress-relieving. I'm literally sleeping better at night. I don't find myself spending all day thinking about how the in world I'm going to deal with the newest problem (how to teach this, how to require that and actually get it to happen). I finally have someone ELSE to deal with the problem. My time, health, and mind are worth something too. I didn't even REALIZE how far this had gone (the incongruities) until I sat there listening to myself. Somehow we think that because we homeschool we ought to be able to do everything ourselves, just by reading a book and trying hard enough. Well on some of this we can't. On some of this it's really stinkin' helpful to let someone else try for a little bit. And maybe if he tries and gets me 80% of the way there and then I try a bit and we pull in some more things, we'll get to where we want to be. Whatever, I just wanted you to know how RELIEVED it made me feel, something I hadn't anticipated.

[Tiramisu]

On the ADHD vs. CAPD thing, that's interesting. I know someone whose dc was originally diagnosed ADHD (and we're talking it was pretty clear, wowsers) but they *missed* the CAPD. Took a couple more years of pursuing stuff, new evaluators, and they finally got it. So I'm not sure the ADHD *excludes* CAPD. It seems like, from what I'm reading, some of these diagnoses sort of include another one, meaning they don't go ahead and label the additional one. But I could be in left field on that.

 

 

 

I think you're right. AHDH shouldn't exclude CAPD. So many of these things overlap, don't they? It seems impossible, in fact, to find one single clear issue. I don't know if I've ever heard of that IRL.

 

It was strange how the previous audiologist saw it as one or the other and was insistent that we'd want one diagnosis over the other, because the one is treatable. Then, the new place seems not to want to test ADHD kids for CAPD, which seems really unfair to me, especially because of the tendency toward coexisting morbidities (love that phrase!) with these kiddoes.

[wapiti]

.

[PeterPan]

I hear you on the feeling of relief. It comes and goes around here, as our last psych visits found more questions than answers ("your kids are complicated"). I feel relieved when we make an appointment. I just wish there weren't so many paths to explore. I want to do the vision and be done. The speech/language/auditory angle is so much less satisfying to "treat."

 

Objectively, do you think the psych was flummoxed because they *are* complicated, or because he just don't happen to have the answers? I was going to tell you I would either punch the guy or offer not to pay if he said that to me, but then I figured that wasn't very polite. :lol:

 

[For the record I am non-violent and have no plans to hit any doctor.]

 

Yes, the VT is so nice and neat. Do the exercises, things get better. Do more games for processing, processing gets better. Find some holes, do more games. But some of these things aren't so neat and pretty and aren't nicely fixable.

 

So here's a question for you wapiti. When you've done evals like this already with your kids, do you actually have the test results so that you could take all that to another psych and have the results evaluated, say along with a one hour interview, sort of for a 2nd opinion? Or do these guys not actually include the RESULTS in the write-ups? If all it would cost you is an hour to get a 2nd opinion from a brain in another state or wherever, that might be interesting.

[wapiti]

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[PeterPan]

Ok, educate me here. You said her verbal score dropped and that she has issues with comprehension if she reads too quickly (yes, I'm reading into thiings). Are those two connected? Further, you're saying your VT was testing reading *comprehension*? Not tracking, but actual comprehension? And what is it they're doing that they're saying will affect it? I need to scratch my head on this a bit, because I don't think anything we did in VT was explicitly for comprehension. (And at this point, given what I'm seeing with her on non-fiction, some magic there would have been good, lol.) And how do you know the issue with the comprehension is eyes, not language? Ie. maybe it needs SLP or audiologist eval, not the VT? I'd be hesitant to do a lot of VT for something nebulous.

 

And yes, I've wondered if on some of these therapies people would go back and need touch-ups, that maybe the therapy gets the kids up to a point but they don't necessarily always continue to develop on their own. It's like speech with ds. I can get him to where he needs to be, but he needs continued help to keep acquiring the NEW sounds he needs.

 

Yes, I think you're right that similar genetic pools and problems can manifest different ways or with different extremities of symptoms. It's why I'm planning to test ds around age 5 or 6, because we just need to. Our SLP told us apraxia almost never occurs in isolation, and like dd, I think we'll see his bright side cover the weak points and just leave these small odd things here and there...

[wapiti]

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[wapiti]

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Edited May 26, 2015 by wapiti

[PeterPan]

Ok, now I know what you're talking about. They were telling her to read quickly, because they wanted to see how her eyes track with the visagraph. And then the questions are to correlate the comprehension to all that. So for instance my dd read at the time a grade leveled text (5th gr? It was a year and a half ago), and got all the questions right except one. That one question she missed correlated to the line her eyes SKIPPED, jumped right over. So they're not testing comprehension the way we think of it but more basic comprehension to connect to the data they're getting on the eyes.

 

I definitely think you're onto something with the concern of a language processing problem affecting her ability to kick out those answers. Then it would be beyond the eyes. That's why I'm saying you want to see other indications of the vision problems. But you know, if they go back and redo the visagraph after a couple months of therapy and her eyes are moving efficiently, without a lot of regressions or skips, and she STILL has comprehension issues, then you've eliminated the eye part.

 

Well it will be interesting to see what happens with our testing. When y'all did your testing, were you in the room? And did the psych give feedback as it progressed, or did you literally have to wait the multiple weeks for his talk/write-up?

[wapiti]

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[rafiki]

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[Tiramisu]

I was away and am just now getting to this thread. Here are my thoughts as I read through it:

 

Sometimes it’s as simple as the font or print size in books. I know I find Comic Sans and 11 pt+ more comfortable to read. I found similar with my oldest, the books he didn’t like had hard to read fonts and print size. Sometimes even the cover bothered him when holding the book or the paper texture was different. Oh, these sensory children -

 

Exactly! “Maybe working memory affects their ability to hold enough words in their head to comprehend longer sentences? Hmm.†I will add my oldest’s WM was in the average range, it’s his ADHD/Executive Functioning issues that affect his working memory and cause the day to day variance. I had a different situation with my middle DS, his processing is SO fast that he read VERY quickly, but there was no meaning attached to each word. He simply read the words on the page as he was asked to. In his case his auditory working memory was below average. I think he’s the type to “hear†the words in his head as he reads, but couldn’t hold on to them long enough to attach the meaning. He’s an awesome decoder though.

 

I remember walking into DS’ first Psychotherapy appointment and totally NOT expecting a couch! DS kept saying, mom this is a hotel, we’re at the wrong place. Then he saw the guys business cards on the table and picked one up, he looked at it and said, “Mom, this guys a “Psychoâ€, let’s get out of here!â€

 

Our NP’s office had a round table with chairs around it, closet full of activities, a computer station for the patients, and then his office area.

 

It was our SLP, not NP who suspected APD. There are only two in our state she said she would use to test for it.

 

Yes, Elizabeth, it’s a process. The info has to come to you at the right time. There are somethings, I’ve seen before, even here on the boards and kind of glossed over, but now I have a different perspective.

 

NOT having a dx leads to a mental complex! These kids are reminded daily just trying to function normally that they are not your average Joe.

 

Our NP was very “personality neutralâ€, very hard to read, but oh so good at his job.

 

Kids were not allowed for the parent meetings.

 

Yllek is right, as far as the baseline NP evaluation, they should “functionally†be a 5 year old to get the most out of it. My DS fully cooperated at age 7.5, but was functionally labeled a 5 year old. So maybe two years earlier we would have had a different experience.

 

You are VERY wise not to officially call your DS a K’er until he’s 6 before school starts. I wish I had done that with mine.

From what I understand they don’t take potential or IQ into consideration. So if your dd is scoring average or above, with the laws that changed in ’04 she won’t be eligible for a official LD diagnosis. This was our situation with my middler.

 

There are also medical diagnosis (DSM IV) codes that include Spectrum, ADHD and your therapy/symptom codes for insurance purposes.

 

It seems like the NP either confirms or rules out neurological hang-ups, but the different therapists, ed psychs, etc get into labeling weaknesses.

 

The guidelines to qualify for help in a public school setting are different. Even with all my youngest’s dx, labels, and issues he’d qualify for minimal assistance.

 

Couldn’t having a auditory working memory deficit look like APD? When these symptoms overlap, it’s as clear as mud.

 

I think one of the most important things “I†got from these assessments is personal validation. I completely opened up “our books†and had multiple professionals look into our homeschool history and do their investigation “behind closed doorsâ€. I was nervous as heck that it was something I was or wasn’t doing. However every single one of them commended me at what I have done, how I’m juggling three with such complicated needs, and commenting on what great kids they are despite their challenges. Those things were priceless!

 

I absolutely love this whole post. Thank you for sharing your experiences and thoughts.

 

That point in bold is something that may be very helpful for me personally. I appreciate you bringing it up. :grouphug:

[wapiti]

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