When to do NP evals for the younger siblings? New LiPS question added

[Amethyst Piano]

So I have one child with ADHD and severe dysgraphia, one child with severe dyslexia plus more, one child with ADHD, anxiety, and aspects of both dysgraphia and dyslexia (but not getting full diagnosis on either), plus one child to whom all things come extraordinarily easily.

 

Then the youngest, now almost 6. Unfortunately, this one's early history is following the path of the ones with the diagnoses. Same speech difficulties/delays, often mistaking words for similar words, not hearing sounds within words, and poor rhyming, though improved since we've been working on it for a year. Little things like her frustration level and intensity level are so much like the older siblings that have diagnoses. I haven't tried to teach her to read yet because...well, lots of reasons, but I guess deep down I'm afraid of what will happen when I do. :(

 

So after two NP evals for the other kids this year plus some other big medical expenses, we will meet our deductible. (Yes, our insurance is covering NP.) I'm wondering if I should try to get her evaluated now at 6 since it will be fully covered this year?

 

Has anyone been in a similar position? I know I wouldn't go if she were my first...but given the family history? (I do know she needs speech and hearing evals at a minimum which I'll do regardless.) I regret not going earlier with the others, but is this too early? I wish I hadn't begun remediation without a diagnosis with the others, but I don't want to teach her with "inferior" materials just to preserve ability to get a diagnosis! (If that makes sense.) Any thoughts?

 

ETA: just did Barton screening. Huge fail. Should I do LiPS before NP eval or wait until after so as to not confuse things? (More info further down in posts)

[Crimson Wife]

 

So after two NP evals for the other kids this year plus some other big medical expenses, we will meet our deductible. (Yes, our insurance is covering NP.) I'm wondering if I should try to get her evaluated now at 6 since it will be fully covered this year?

 

That is what I personally would do, bearing in mind that some tests may need to be repeated in a few years. But even if you do need to have say, CAPD testing in 2-3 years, at least you'd have a lot of the expense out-of-the-way while you've hit your deductible.

[Amethyst Piano]

That is what I personally would do, bearing in mind that some tests may need to be repeated in a few years. But even if you do need to have say, CAPD testing in 2-3 years, at least you'd have a lot of the expense out-of-the-way while you've hit your deductible.

Thanks. This is what I'm leaning toward though I don't feel like I have concrete reason right now.

 

However, I did just give her the Barton screening test (for those familiar with it) and she failed spectacularly. She only got 4/15 correct on Part C, the 3 sounds section, 3/15 correct after repeat, and 8/15 just plain wrong even after 2nd try. Sigh.

[Crimson Wife]

6 is young enough that she could just be a "late bloomer". With the strong family history, however, I'd be inclined to test sooner rather than later. Especially since it's a girl and girls tend to mature faster than boys.

[texasmama]

There seems to be no down side to testing now other than you having confirmed some things that would be difficult and require emotional adjustment.  (((hugs))) for that piece of it.  I would definitely work up all of my courage and do the testing now, particularly since your deductible is met.

[MistyMountain]

I would test now since the deductible is met especially with all the signs she is showing plus family history. I do not think 6 is too young to know.

[Amethyst Piano]

Yeah, I think you are all right, especially now that I had her do the Barton screening and saw how much she struggled.

 

So I need to do LiPS with her. No problem, already have it, used it with all the other kids.

 

But. Should I wait until after a NP eval? It took about 4-5 months to get the other kids in, so I'd probably be looking at a loss of 5 months or so vs. starting her right away. I made the mistake of trying to fix before evals previously. I don't want to do that again. Thoughts?

[PeterPan]

That would take some imagination to think this is not what it looks like it is, given your family history.  Odds are she'll still test as dyslexic, no matter how hard you work.  I would call your psych (someone who diagnoses dyslexia), ask them, and do what they say.

 

Seriously.

 

I fumed because my ds didn't seem very dyslexic to the first psych when I had done so much LIPS, ostensibly getting him close to age-appropriate (but still low enough to get a label).  Got him into the ps psych a few months later, doing Barton 3, and the dyslexia/reading disorder was again VERY obvious, showing up in reading comprehension.  So I say no matter what it's going to be there if the psych really looks.  But just do what the psych says.  Sure, in an ideal world you'd get that CTOPP or whatever he's going to run done first, sure.  If not, it will still be obvious in reading comprehension issues, etc.  

[Amethyst Piano]

That would take some imagination to think this is not what it looks like it is, given your family history. Odds are she'll still test as dyslexic, no matter how hard you work. I would call your psych (someone who diagnoses dyslexia), ask them, and do what they say.

 

Seriously.

 

I fumed because my ds didn't seem very dyslexic to the first psych when I had done so much LIPS, ostensibly getting him close to age-appropriate (but still low enough to get a label). Got him into the ps psych a few months later, doing Barton 3, and the dyslexia/reading disorder was again VERY obvious, showing up in reading comprehension. So I say no matter what it's going to be there if the psych really looks. But just do what the psych says. Sure, in an ideal world you'd get that CTOPP or whatever he's going to run done first, sure. If not, it will still be obvious in reading comprehension issues, etc.

Yes, fuming is what I did in the past when doc 3 years ago wouldn't say dyslexia because the older kids were reading "at grade level". But years of work (in their case) is different than a few months of work, for sure. I guess the question is if the psych really looks, as you say. I'm a little concerned about the current one, too, since she wouldn't say dd has dyslexia even though phonological skills are weak and she recommended tutoring for dyslexia anyway. Sigh. But we've been over that already! Lol

 

 

 

Thanks for the nudge in the right direction, everyone. I guess deep down I knew what I needed to do, but...this is my baby. And I tried so hard to do everything right this time, I ate much more carefully during pregnancy, I fixed so much I thought I did "wrong" with the olders, etc. I was convinced she was going to be like my one who has no learning challenges just because I did everything "right". I know that's not really how it works, but...somehow this...just hurts or something inside.

[PeterPan]

I asked the same thing, whether I caused it.  He looked at me funny and asked if I had dropped him on his head?  ;)

 

It's genes.  It's just genes.  You aren't changing your genes with your salad, no matter how much you eat, not to that degree.  And the world is a better place for the enriching experience of diversity.

 

Yes, it's going to be a lot easier to get the dyslexia diagnosed if you go in before you do unusual and therapeutic level interventions. How close is the dc to 6?

[Amethyst Piano]

I asked the same thing, whether I caused it. He looked at me funny and asked if I had dropped him on his head? ;)

 

It's genes. It's just genes. You aren't changing your genes with your salad, no matter how much you eat, not to that degree. And the world is a better place for the enriching experience of diversity.

 

Yes, it's going to be a lot easier to get the dyslexia diagnosed if you go in before you do unusual and therapeutic level interventions. How close is the dc to 6?

Yes, those pesky genes. But what about the expression of those genes?? Maybe I did that! Lol

 

She'll be 6 in 5 weeks. Not so far away.

[PeterPan]

Oh shoot, just 5 weeks away?  Get that psych eval, woman!!!  Work on handwriting until then.  Have you looked at EZ Write?  There are videos online showing how to do it.  Do the foundational strokes for the next 5 weeks, sign her up for swim lessons, etc.  The 5 weeks will fly by.  Even if it takes you 3 months to get into a psych, it will be worth it.  Hopefully you don't have to wait longer than that.  Definitely eval when you're that close.  You'll get more information by crossing her over to 6, and you're so close.  I'd definitely wait on LIPS and get the evals.  :)

[PeterPan]

Btw, the point of the discrepancy being such a marker is that these things would develop NATURALLY in kids, just with the normal course of things.  It's not what you're doing, but the fact that you've BEEN doing all the normal, appropriate things and it's STILL not coming.  That's what makes it noteworthy.  

 

[Crimson Wife]

Whether to wait or not seems like such a YMMV thing. All of our kids have their own unique set of challenges.

 

I have personally not chosen to wait for the NP eval in order to get started on LiPS. I'm reading through the manual now and as soon as my DD gets her hearing aids, we're going to start. I actually think in her case, straightening out the consonant pairs via LiPS will probably make the NP results MORE accurate. The whole goal of the NP eval is to tease apart the impact of the hearing impairment from any underlying LD's. The more that I can do to remediate the physical disability, the more confident everyone can be that any remaining symptoms are a brain issue.

[mellifera33]

nm

[PeterPan]

Even our ps is willing to acknowledge the SLD because ds has had many interventions that SHOULD have done it in a NT child.  If you call your psych, they'll have an opinion.  I *think* they said they usually don't want to diagnose a child with dyslexia until they're half-way through K5, meaning they've had that instruction that should have worked.  But in the case of my ds, he could not identify initial or final consonants, medial vowels, ANYTHING before LIPS.  That was even though we had done many other programs, so doing the therapy program (LIPS), which finally got him able to hear those, clearly altered his score.  If he had NOT tested as dyslexic as a result (like just above the disability range, not even by discrepancy), I would have been very, very frustrated.  As is, it worked out for us.  I'm just acknowledging there could be situations where it wouldn't.  But yes, some of the psychs want them to have had instruction so it's clear it's not merely an instruction deficit.  The ps has their RTI (Response to Intervention) process, and because I could demonstrate what I had done as a homeschooler was similar to what they would have done with RTI, they were more willing to acknowledge it as a disability. 

 

If the dc is almost 6, that's typical K5 age.  Are you saying you've been doing NOTHING??  You've done no phonemic awareness, letter awareness, print awareness, sight words for basic things around the house (exit, on, tv, etc.)??  No alphabet puzzles, beginning writing, cvc puzzles, Leap Frog Letter Factory, NOTHING??  

 

You could have a middle ground here, if the psych wants to see intervention/instruction before diagnosing. You could get OPGTR or Phonics Pathways from the library and try it on her to see what happens.  It won't be enough to affect CTOPP scores if she's dyslexic, but it's something to demonstrate attempts at reading instruction and enough to get a non-disabled student reading at that age.  Or AAR pre- is adorable and in the realm of good programs you use with NT children.  If she can actually do it, that would be a fabulous sign.  My dyslexic enjoyed the alphabet worksheets but quickly got to where he couldn't handle the phonemic awareness tasks and couldn't move forward.  You don't have to do a *therapy* program to demonstrate adequate instruction.  

 

Working memory deficits are not getting you a reading disorder label. 

[Amethyst Piano]

 

 

If the dc is almost 6, that's typical K5 age.  Are you saying you've been doing NOTHING??  You've done no phonemic awareness, letter awareness, print awareness, sight words for basic things around the house (exit, on, tv, etc.)??  No alphabet puzzles, beginning writing, cvc puzzles, Leap Frog Letter Factory, NOTHING??  

 

Goodness no. Didn't mean to imply that at all.

 

She's done the first 3 workbooks in the Ready, Set, Go for the Code series, she's gone through all four books in the Developing the Early Learner series, she's done EarlyBird K Singapore math workbooks, she's currently doing pre-AAR, she's done plenty of alphabet puzzles, stringing alphabet letters together, she has an alphabet rug with pictures in her room that she plays with a lot, she knew her letter sounds at 3 (but no blending), she's completed 2 HWT workbooks, plus the HWT app, she's done quite a few iPad apps with letters/sounds/easy words, plus a bunch of random stuff I've had lying around left over from the others and someone from the family reads to her every day. She can definitely pick out quite a few words, but I think they are just sight words. She "reads" the items on my to-do list, but she's just very good at guessing since she knows what things I usually need to do.

 

But…I've actually hired a teen (with an early childhood education interest/background) to come and help me, and she is the one who has ended up doing most of this seat work with my DD, just due to my lack of time. I guess that's why I was so surprised to see just how badly she did on the Barton pretest. Obviously, I need to spend more time with her myself for a better feel for where we are. Sigh. (feeling bad for not being more on top of this…I need to learn to how to manufacture time and energy)

 

 

 

Got to go now, back later.

[PeterPan]

How far is she in AAR pre? Is she hitting walls? Struggling to do tasks?

[Amethyst Piano]

Whether to wait or not seems like such a YMMV thing. All of our kids have their own unique set of challenges.

 

I have personally not chosen to wait for the NP eval in order to get started on LiPS. I'm reading through the manual now and as soon as my DD gets her hearing aids, we're going to start. I actually think in her case, straightening out the consonant pairs via LiPS will probably make the NP results MORE accurate. The whole goal of the NP eval is to tease apart the impact of the hearing impairment from any underlying LD's. The more that I can do to remediate the physical disability, the more confident everyone can be that any remaining symptoms are a brain issue.

I can definitely see why you start LiPS first. That makes tons of sense in your situation. Thanks for sharing--that helps me sort out my situation better.

[Amethyst Piano]

Starting LiPS is what has convinced me that ds needs a real evaluation, not just the "yeah, he's dyslexic--get an official eval. at some point" we got from a consultation with an educational psychologist. The sound tracking exercises have been torture for ds--he doesn't have the working memory to remember three consonant sounds long enough to find the correct mouth pictures. We're still looking for an evaluator--psychologists in our area seem to either take month-long vacations and be unavailable, or just never call back after repeated attempts to call for information.

I had a really hard time getting an appt for evals the first time. I'd call and leave messages, but no one would call back or they just weren't scheduling or they said they'd call when they got a spot in the wait list?? or..plenty of other excuses. It was so hard when I'd finally gotten up the courage to call and then just to be blown off. I feel for you. I hope you find someone good soon!

 

On the Barton screening, she missed about three that seemed due to working memory. The rest seemed more like she just didn't hear the slight differences in the sounds.

[Amethyst Piano]

Even our ps is willing to acknowledge the SLD because ds has had many interventions that SHOULD have done it in a NT child. If you call your psych, they'll have an opinion. I *think* they said they usually don't want to diagnose a child with dyslexia until they're half-way through K5, meaning they've had that instruction that should have worked. But in the case of my ds, he could not identify initial or final consonants, medial vowels, ANYTHING before LIPS. That was even though we had done many other programs, so doing the therapy program (LIPS), which finally got him able to hear those, clearly altered his score. If he had NOT tested as dyslexic as a result (like just above the disability range, not even by discrepancy), I would have been very, very frustrated. As is, it worked out for us. I'm just acknowledging there could be situations where it wouldn't. But yes, some of the psychs want them to have had instruction so it's clear it's not merely an instruction deficit. The ps has their RTI (Response to Intervention) process, and because I could demonstrate what I had done as a homeschooler was similar to what they would have done with RTI, they were more willing to acknowledge it as a disability.

 

If the dc is almost 6, that's typical K5 age. Are you saying you've been doing NOTHING?? You've done no phonemic awareness, letter awareness, print awareness, sight words for basic things around the house (exit, on, tv, etc.)?? No alphabet puzzles, beginning writing, cvc puzzles, Leap Frog Letter Factory, NOTHING??

 

You could have a middle ground here, if the psych wants to see intervention/instruction before diagnosing. You could get OPGTR or Phonics Pathways from the library and try it on her to see what happens. It won't be enough to affect CTOPP scores if she's dyslexic, but it's something to demonstrate attempts at reading instruction and enough to get a non-disabled student reading at that age. Or AAR pre- is adorable and in the realm of good programs you use with NT children. If she can actually do it, that would be a fabulous sign. My dyslexic enjoyed the alphabet worksheets but quickly got to where he couldn't handle the phonemic awareness tasks and couldn't move forward. You don't have to do a *therapy* program to demonstrate adequate instruction.

 

Working memory deficits are not getting you a reading disorder label.

Thanks for this post. I've been thinking on psychs wanting to see instruction part. I didn't get a chance to call them today, but I hope to call tomorrow and will definitely ask about this. I probably wouldn't have thought of this on my own, so thank you for bringing it up!

[Amethyst Piano]

How far is she in AAR pre? Is she hitting walls? Struggling to do tasks?

She is still toward the beginning. Capital K. I don't really know how she is doing, because the person I hired is doing it with her. The teen just had oral surgery, so I can't really bug her about it right now either. I did the first few lessons with Dd back in the fall, and she could barely rhyme back then. Now she is doing much better with that, at least. Just now, I "quizzed" her on some words and she was able to do better with the rhyming.

 

I think I probably need to take back over the AAR part with her so I know what's going on! And thanks for the EZ Write mention. I am going to take a look at it....I'm so tired of HWT, plus I have bad associations with it since that's what I used with my dysgraphic kids. So *this* is the kind of handwriting the program produces!:) Silly, I know. Lol

[Crimson Wife]

 The rest seemed more like she just didn't hear the slight differences in the sounds.

 

Has she had a recent full audiology exam? If not, I would strongly encourage you to get one just to make sure her hearing is normal. Especially with your deductible already being met for the year.

[PeterPan]

Just to ditto Crimson, I did take my ds to get his hearing checked right before his np eval.  You really never know what will show up.  I'm taking dd soon too, have the appt scheduled.  

 

Sounds like you have something you can do in the meantime while you're looking for a psych.  If she was having success with AAR pre, you might as well continue forward.  It's a solid program, and if she can do the phonological tasks without frustration it's an excellent sign.  Since you have it and she was having success using it, you might as well continue.  

 

What happens if you drive further for an eval?  Have you tried the Learning Ally referral lists to see if they pop up anything?  Or your state dyslexia association to see how might be on the board or a popular speaker at their functions?  Remember it's ok to make an eval and realize as you get up to it you don't need it.  You'd much rather do that than not to make the appt and want it.   :(

 

[Amethyst Piano]

Has she had a recent full audiology exam? If not, I would strongly encourage you to get one just to make sure her hearing is normal. Especially with your deductible already being met for the year.

That is in the works. I have an appointment with her ped to get the speech and hearing referrals. That's what I did for the older children, too. The sheer number of appointments I have coming up is staggering!

[Amethyst Piano]

Just to ditto Crimson, I did take my ds to get his hearing checked right before his np eval. You really never know what will show up. I'm taking dd soon too, have the appt scheduled.

 

Sounds like you have something you can do in the meantime while you're looking for a psych. If she was having success with AAR pre, you might as well continue forward. It's a solid program, and if she can do the phonological tasks without frustration it's an excellent sign. Since you have it and she was having success using it, you might as well continue.

 

What happens if you drive further for an eval? Have you tried the Learning Ally referral lists to see if they pop up anything? Or your state dyslexia association to see how might be on the board or a popular speaker at their functions? Remember it's ok to make an eval and realize as you get up to it you don't need it. You'd much rather do that than not to make the appt and want it. :(

Yes, I do have plenty to do while I wait! And I didn't need anything else added to my plate. :) but seriously, I am thankful that we are finally in a position to be able to get all of this checked out this year. Really, really thankful.

 

I am planning to continue with the AAR for her. I like the program. I used the first few AAS levels for the older kids and really liked it, too...other than the time it took to do with 4 kids.

 

I'm already driving "further" bypassing our "local" children's hospital for the bigger city hospital. The first evals I got for the older kids were at the children's hosp about 35 minutes away and were practically useless. With the ones I just had (where NP said older DD didn't have dyslexia but get tutored for it anyway and then the Scottish Rite accepted her for tutoring) were at big city hospital about 1.5 hours away (more in traffic). I think I'll just go to the same NP that just saw my oldest DS and older DD. I'm hesitating a bit though. I could see someone else there, but maybe that would be awkward?

 

ETA: I did check Learning Ally lists and a little on the state dyslexia organizations. No real help from either.

Since insurance is paying, I'm definitely sticking to their list anyway! At least to start....