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mamashark

Needing a pep-talk and direction

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My dd8 who has dyslexia was diagnosed yesterday with tourettes. The neurologist specifically requested that we get a private neuropsych eval rather than a psychoeducational evaluation through the school district because she wants more info and feels that we need more info than the schools can give. So I'm on 2 wait lists- one is 6-9 months long and the other is 12 months long. 😞 Ironically, she also told me that she's glad we homeschool - we can make all the accommodations and address her needs in a much more targeted way that the public school system.

In the meantime I'm realizing that answers aren't like neon sign posts. Once we get the testing it's not like I'll have a piece of paper that says "do this curriculum and she's start to progress!" and for that matter, I can't wait 6-12 months before I figure out what to do next for reading instruction. 

She's progressing fine in math between the Ronit Bird foundation I gave her over the past 2 years and now working her way through Math U See. She's listening to me read books for history, participating in science. She's happy, getting ready to start a new dance class, has friends. But I feel this tension, this desperation almost, to figure out the bite-sized pieces necessary to work on reading.

I am someone who needs to see the progress, the steps to check off as we go. With my DS6 with ASD I keep a binder with goals that I update monthly. It keeps me focused on the little things and helps me see progress when it feels like we are moving backward. (Like yesterday's win was an easy transition for something that has been a huge challenge the previous several times). But I can't feel that progress or see those small goals for reading. It's like I have this end goal in my head where she can pick up something and just read it, but I don't know how to get the small in-between steps. 

We've taken a couple weeks off of all reading instruction now and yesterday when I was reading her a level 1 reader book in the waiting room, she couldn't sound out the word /get/. She kept starting with /t/ until I finally told her the word.  Sorry for venting, this mama is just feeling a bit lost and down today.  

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Back up a sec. Have you done Barton with this dd8? Is there a neurological problem BEYOND the dyslexia? I can't remember, sorry.

I think the neurologist is overbilling what the neuropsych will do. You'll get more detailed ACTIONABLE info from an SLP. You should still do the neuropsych eval, sure. So was the dyslexia already diagnosed by someone? And was that a ps eval? I'm just saying if you look at the list of what a neuropsych will do, it's not typically that much more exciting than what a multi-factored eval does. In *theory* they will catch some things other psychs miss, like if there's a particular part of the brain affected because of chemo, trauma, a tumor, that kind of thing, yes. But if this is only SLDs, you're likely to be disappointed. Their language testing may stop at a screener like the CELF and doing a CTOPP. For real. Has she already had the CTOPP? The CELF is so, well don't get me started.

If you can find an SLP who specializes in literacy, they may own really detailed tests and be able to dig in on language for you. The reading disability is a LANGUAGE disability. I see why you're highly concerned. Is that difficulty with "get" after receiving intervention-level instruction? Has she done LIPS/FIS?

Bonus is SLPs may be covered by your insurance, bill at a lower rate, and will have a much lower wait. You definitely don't need to wait a year for a neuropsych report before you can get actionable information. What testing has she had so far?

Edited by PeterPan
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30 minutes ago, mamashark said:

We've taken a couple weeks off of all reading instruction

What have you been using? It's normal to have regression with SLDs, but that's really severe. Is there a physical issue going on as well as the dyslexia?

How does she do with audiobooks? If she is formally diagnosed, you want to get her signed up with NLS/BARD pronto and get her on audiobooks. That way her language continues to develop even if she's not reading. 

Edited by PeterPan

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11 minutes ago, PeterPan said:

Have you done Barton with this dd8? Is there a neurological problem BEYOND the dyslexia?

Yes - we did level 1 and 2 and couldn't get past the first few lessons in level 3. We took a break from that a year ago and did SpellLinks this past year. 

The neurological problem beyond dyslexia has been officially diagnosed as Tourettes.

12 minutes ago, PeterPan said:

So was the dyslexia already diagnosed by someone?

I've not had all of the official testing completed because I had no need for it to intervene. We had slp testing when she was 4 that showed signs of dyslexia at the time, so I just assumed it was and used Orton-Gillingham for a year. Then switched to Barton for 3 years, then spell-links this year. 

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1 hour ago, PeterPan said:

I'm just saying if you look at the list of what a neuropsych will do, it's not typically that much more exciting than what a multi-factored eval does. In *theory* they will catch some things other psychs miss, like if there's a particular part of the brain affected because of chemo, trauma, a tumor, that kind of thing, yes. But if this is only SLDs, you're likely to be disappointed. Their language testing may stop at a screener like the CELF and doing a CTOPP. For real. Has she already had the CTOPP? The CELF is so, well don't get me started.

 

I'm definitely not an expert, but from the limited experience I do have, this is the case in my area. One neuropsych I called doesn't even routinely give the screeners! There's no way she would have caught what is going on with my DD. So for what it's worth, I would recommend getting the neuropsych eval for the Tourettes and then get the SLP/Ed psych for the language stuff. The SLP might not be that much if you can get insurance to cover the neuropsychologist testing and then the SLP can use the IQ info and just do the language testing. 

Sending lots of virtual hugs and encouragement. I know what it's like to feel out to sea without a paddle as a parent. I hope you can treat your self to a fancy coffee and an hour or two with a good book, or whatever it is that fills you up a little bit. 

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So this dc has had 5 years of tier 3 level intervention and still cannot sound out a CVC word? You definitely need the neuropsych eval, but also do the SLP, OT. The neuropsych will not give you detailed language testing that you need. And the problem is, sometimes girls float along and go under the radar and don't get a more global diagnosis either. Given then family history, you could assume a complicated gene pool and use strategies from lots of places. 

So at this point you don't know what is a developmental delay, what is IQ, what is the SLD. There's probably a mix. I would probably move on from SPELL-Links, as it doesn't sound like that was a good fit. I would probably use consistent review approaches with no major breaks. Plod. You could review your Barton and go back and do it a fresh way. See whether it's the decoding or the language holding her back. You may have to go sideways when she hits walls and hold ground, doing things more ways until she's ready to go forward again. Not all kids go forward quickly.

I think you need the SLP testing refreshed, preferably by someone who does a lot of literacy who will DIG IN on the language development. Not just a CELF but really digging in. I really like the SPELT and TNL. They should have a CTOPP. Probably throw in the SLDT or something else for pragmatics and the TOPS (test of problem solving) as well. And your normal language stuff for vocabulary, etc. The language testing may get you some actionable answers. 

Have you checked for retained reflexes? They can glitch language development.

You can't always make things go faster, and sometimes IT'S NOT YOU. It really might not be your instruction. It might be her and where she is developmentally or with the mix of genes she has and how they play out. That's what the neurologist is saying, that it's not you, it's probably not *only* dyslexia, and it's complex. 

Our job is to be very faithful, plodding, working. We can't make results happen, but we can be faithful. If she hits a wall, go laterally and work on the skill a different way. She may have a lot of plodding and a different pace, I don't know. Keep getting evals. Girls are harder because they have these girl strengths that make people miss larger, more global explanations, sigh. She's going to be who she is.

I don't think it means you're doing something wrong if it's hard and not going well. My motto with my ds is EMBRACE THE PACE. Otherwise I go crazy, thinking if I did more or did better he would go faster. With him I really have to embrace the pace. He's got a gifted IQ and he's learning his multiplication tables right now. He's 10. Rising 5th. Some kids need to generalize and do things more ways, so they go more laterally rather than faster ahead. Like she may need to work on a skill in Barton and then GENERALIZE it lots of directions. She may have it when she's using the Barton page but not in the next setting or the next. So it will look like she's not learning, but maybe she hasn't GENERALIZED the skill. And generalizing, taking it wider, seems really slow, but it's really SOLID. 

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Okay, is this — her current level is around CVC words (consonant-vowel-consonant)?  There is no shame in that.  They are tough!  It is okay for them to take time!

Or, is this more that she got stuck on this one word, and you are going “how can she mess up a simple CVC word?”  

Sometimes an easy word gets kids tripped up. If she’s starting with “t” it is really hard sometimes to back up and start over with the different sound, she already has “t” in her mind.  

Getting nervous does now help!  Kids can freeze and feel frustrated, they can get brain-lock.  

This just is NOT an indicator of their overall level, it’s — brain-lock.  

If she’s on CVC words, or lower, then — okay, she’s on CVC words.  It’s okay.

If she’s randomly getting stuck on words she does know, okay, be patient with her.  It happens. 

I like the prompting guide from Abecedarian, I will link it.  If a letter sound is just not being recalled, you can just give the letter sound.  Especially if it’s an out-of-the-blue thing.  Sometimes kids just get stuck or freeze — you can give the letter sound.  Then move on to the next sound if that is not enough to get them un-stuck. 

Do you see her get stuck like this sometimes in math?  I would with say a math fact.  But maybe we are more forgiving when this happens with a math fact?  I don’t know.  

I hope you can get some good results from testing when it comes.  

I would maybe go ahead with the school testing and just know you will also need to follow up with private, depending on how much of a hassle it is.  It might not be worth it, but with such a long wait for private it might be worthwhile. 

You also might look at driving for a shorter wait list, looking at cities or possibly across state lines (depending on your insurance).  

 

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Oh — I agree with others about looking for a speech therapist.  That is a good idea.  

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To be encouraging — my 14-year-old would still get stuck and forget letter sounds when he was 8.  He was legitimately past CVC words then, but still working on learning to read and learning phonograms, working on sounding out longer words, fluency, etc when he was 8.  

He is a good reader now.  

Edit:  I think you need to see overall progress with what you are doing, but — there is a big difference between feeling like “wow we need a huge step back” or “we need to go back to working on letter sounds and blending CVC words,” which are fine and are one thing, or feeling like “how is she still getting stuck on a CVC word?????????”

That getting stuck can just happen.  Stress, frustration, just being stuck, having a hard time starting over when you got started one way ———- these things happen!  It is okay.  

Edited by Lecka
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Ok, on the evals, if the ps does the IQ with the WISC etc. and botches it (which happens) then you have to wait to redo it privately. If the ps does shorter evals using shorter IQ testing (which they sometimes do) it won't be an issue. PS evals just vary. Our district didn't own the tests and doesn't go that in-depth. I think you need private evals. If private can't happen, really can't happen, then I would start with the ps evals, advocate really hard to get them thorough, and then file for an IEE to get private evals if/when they botch them. It will take time, and if you can do them privately I would. But if you can't, that's your path, how you'll get it done, and it will get done.

What the ps evals could do for you is eliminate some of the basics like with the SLP so that you're not paying for as much privately. If you're going to have to pay for the private SLP eval, then that would be a way to tag team and stretch your money. That could be a strategy. Just know that the IEP process you'd be going through is not fast. It could literally be 3 months before you have results. Now some, if you made the request right now, would light a fire and get you done before mid-June just because they're leaving. Others will drag it out the full legal timeline. 

The challenge with a dc this age is how aware they are and whether they start to conclude things from the evals. If she's very self-aware, less can be more. Going through the ps evals and then private can be a lot. We did it. We did private, then ps, then private, then more private, then more private. I kid you not. But my ds is completely oblivious, thanks to his glorious delays. If your dc notices more, that's something to consider. And if they don't, that's handy at that moment, sigh. 

Edited by PeterPan
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I will add — g is one where the font in a book is different than handwritten or what is often on a screen.  That can be confusing.  

Edit:

https://www.google.com/search?q=g&prmd=vni&source=lnms&tbm=isch&sa=X&ved=2ahUKEwjB3OC11aziAhVPTt8KHdxhBh8Q_AUoA3oECAwQAw&biw=414&bih=622#imgrc=rLHy1V7d4fzgRM

Edited by Lecka

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I second the recommendation to use audio books if you are not already.

My 11 year old has dyslexia, when she was 8 She wasn't even close to consistently sounding out CVC words. We kept working at reading though I did sometimes take breaks; things started to click between ages 9 and 10. She's still kind of a slow reader and struggles with spelling but her reading comprehension is phenomenal and I think all the audio books made a big difference there.

I have a child with Tourettes as well, different kid. It's a tough diagnosis. We are in the process of trying to figure out some of the genetics behind those difficulties and hopefully address that via supplements.

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We took a break from barton when she was able to read a cvc word with one consonant blend on front or back of the word, but could NOT do a consonant blend on front and back. I am thinking maybe go back to the start of level three and see if she can get any further now that we're a year older. 

And I need to get more audio books for her.

thanks for the encouragement!

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If she was making progress before with Barton, that's a really good sign! And if she hits a wall again, that's ok. Just go laterally, treading water, holding the skill till she's ready to go forward again. 

https://www.highnoonbooks.com/HNB/HNB-SoundOut_Intro.tpl?cart=155844549716531465 These might work well once you do your review.

Is she passing the Barton screening at this point?   

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Consonant blends are so hard!

I think time may have helped. 

Another thing that helped here was getting to the point where sounding out just a blend at the beginning or end wasn’t so hard.  Once they are (finally......finally....... finally......) recognizing some of those consonant blends, then it gets easier to do ones at the beginning and end.  

My younger son is reading words with blends at the beginning and end now, and it took forever.  

Working on spelling helped him some I think, but mainly I think just time and many many repetitions over time.  I think it can take time for kids to learn and have it really sink in.

My older son took off to some extent after he could do blends.  Learning more phonograms took time but the blending was not a hangup once he could do consonant blends. 

The number of sounds to blend in one syllable only gets so high, and a lot of times having more phonograms doesn’t make the blending harder/longer.  And blending consonants i think is harder than blending a consonant (or consonant blend) plus a phonogram like ea or oi or whatever.  

There is also a finite number of consonant blends, which I always found encouraging, because there are only so many and then there is an end to them!  It will seem like there are a million but there really aren’t that many.  

I did see with my younger son, as time passed and he was doing well with some but not others, he could spell the ones he could read more easily, and then the ones he had trouble spelling he also had trouble reading.  That helped me to see which exact ones to work on (later on when we weren’t just working on blends in general) and which ones he knew more easily.  

He had a lot of trouble with words ending in -nt, after he was doing easier with some others.

I also don’t know about other programs, but in AAS/AAR she says final blends are easier than beginning blends, so if you want to work more on final blends first (if you review) then that is something I was interested in finding out 🙂

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Those consonant blends are why I kept using the LIPS tiles all through Barton 1 and 2. Barton makes the assumption that if kids can do the skill in isolation, they can do it in the next setting or in a more complex situation. I had no reason to think that would be the case for my ds and every reason to think it would be the opposite. So we were forming every word using EVERY step and EVERY tool I could find. LIPS faces, blank tiles, magnet letters, sand paper letters. Everything.

But I think there's just development and timetable too, sigh. 

I think the trouble is if we assume it's exclusively an SLD and we're like wow, why is this so much harder than the curriculum for that SLD makes it sound, and then we figure it means we're doing something wrong. It really might be that hard or that slow going or need to be done in many more ways. The key going forward is not to lose skills while you tread water, that's for sure.

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Did this dc do any scripting or large language memorization? I don't know, just asking. There's the whole train of thought that you have to be processing on that individual sound level for spelling/reading to make sense. Otherwise they're just memorizing gibberish. We had this point in Barton where ds was memorizing but it was clear it didn't MEAN anything to him. Like he had no clue why he would want to know it even. We stopped, got the reflexes integrated, did tons of language work, and now he has started noticing spelling on his own. Like yesterday he spelled FOOD for me, and I'm like where did that come from? 

I'm not saying stop working on it, but noticing and giving a rip about spelling and individual sounds assumes their brain is processing language on that level. My ds wasn't. It's something SLP testing can help you hone in on. Does this dc WANT to spell? Does she have communicative intent with writing or have things she wants to write? 

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5 hours ago, PeterPan said:

If she was making progress before with Barton, that's a really good sign!

Yes, we had no issues until we hit that wall... so that's a good thing, meaning we can get past this wall and keep going? 

5 hours ago, Lecka said:

Consonant blends are so hard!

 

I just wish we could skip them and come back, but maybe with the time that's passed, she can move past them. I'll pull Barton back out this week and see what she can do.

5 hours ago, PeterPan said:

Is she passing the Barton screening at this point?   

I don't know, I haven't thought about trying that again.

4 hours ago, PeterPan said:

Did this dc do any scripting or large language memorization?

no, she has not done this at all. The language was hard for her, sure, and we've worked on a lot of language pieces this year, but one of the reasons I had difficulty with her motivation when doing Barton was because the words were not the ones she wanted to read, so it was a waste of her time, from her perspective. I would say she's doing more memorization with spell-links. 

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Yeah, if she's struggled that much with Barton levels 1-3, I would really question if she has the prerequisite skills for any OG program.  Did she pass the Barton screening?  She sorta screams like a kid who needs LIPS to me.  I'd definitely do the neuropsych, but I'd for sure start with more detailed SLP testing in the meantime.  

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2 hours ago, mamashark said:

no, she has not done this at all. The language was hard for her, sure, and we've worked on a lot of language pieces this year, but one of the reasons I had difficulty with her motivation when doing Barton was because the words were not the ones she wanted to read, so it was a waste of her time, from her perspective. I would say she's doing more memorization with spell-links. 

You need SLP testing. 

2 hours ago, mamashark said:

I don't know, I haven't thought about trying that again.

Well do it and report back. It's free and takes 10 minutes. You would not be the first to go forward and realize you needed to go backward. It could even be that she has just regressed, who knows. Just saying I would do it and not assume anything. She has lost a significant amount of progress.

2 hours ago, mamashark said:

maybe with the time that's passed, she can move past them.

Here's the problem. A DLD (developmental language delay/disorder) is not going to go away or age out. It doesn't improve by waiting. She may need some targeted intervention. The stuff that got my ds interested in spelling was NOT what you'd think. Like you'd think we'd be working on spelling. Nope, it was working on stuff like https://www.linguisystems.com/Products/31162/sparc-for-grammar.aspx  They no longer have the samples, and I don't understand why. Anyways, we were working on LANGUAGE at the word level and parts of words level. Then, as he started putting meaning to those, then spelling (more parts of words) became relevant/useful.

So who knows what's going on, but something is, sigh. I think you've been given good advice to get the neuropsych evals. I would just add to that thorough SLP testing by someone who specializes in literacy. And if it's going to cost you 3 arms and a leg, start with the ps and finish it privately. The thing is, districts and practitioners who rely really heavily on one test, like the CELF, are then gonna blow you off and you'll be left conflicted over whether to pay for more evals yourself or not. It's a great way to have some conflict in the home, sigh. There's an SLP in the big city near us who claims to specialize in apraxia (spit spit), who lectures at conventions saying she's awesome with apraxia (spit spit), and she had no clue how to work with ds (who has apraxia) and did a pathetically informal, incomplete assessment of ds' speech concluding he was fine, wasn't sure what I was whining about, she couldn't see the problem, blah blah. So I begged our regular SLPs (who were really good at apraxia) to please BUY THE STUPID TESTS, we ran them, and low and behold he FAILED, FAILED, FAILED the tests!!! 

So there's just nothing like people who don't have the tools and don't know what they're doing telling you they don't see the problem and that you should shut up. You're not wrong, and it's a matter of finding the test that shows it. Go to the wrong person, they don't even own the test. But in their world, you're now fine because you passed the test they DO own. And the previous tests they ran on my ds, get this, used MULTIPLE CHOICE. I kid you not. Because everyone knows conversations and real life language are best made with multiple choice. Snort. Don't even get me started. I am started.

I'm sorry it's hard. I'm just showing you what can happen so you can decide. Because if you do ps evals or use someone who doesn't even own the tests, then your dh is gonna be like ok, stop the diagnosis seeking, it's you, blah blah. Then you've got conflict. Or you sort that out ahead. It's just not a fun place to be in and more than a few of us have been there, sigh.

How many more dc do you have? Is it just these two or you have more? I was just curious, no reason. I was trying to figure out how much more you're trying to wrangle here. Evals are kind of an ugly stage/phase, and then like you're saying you want an intervention plan. The problem is, you're not sure what intervention she needs and what is going on. My ds failed the SPELT, even though he was talking a lot, so we went back to square one.

There's also this sort of assumption that kids will spell their way into reading and that they WANT to spell because they want to xyz (want to write, want to whatever). Does she WANT to write? It's a really important question to ask, because that IS developmental. Reading, personally I would take right up to their readiness. I wouldn't belabor beyond readiness, but I'd be right where she is. But that wanting to write, that's sort of natural. Like she might want to make price slips for her play store or write recipes or do this or that. It tells you a lot if she's wanting to write and it tells you a lot if she's NOT.

Barton assumed no DLD and that kids both wanted to read and write. My ds was cool with reading but was utterly oblivious on the writing. Now he also has his SLD Writing diagnosis and has trouble on every level. I'm just saying these merge and it tells you more is going on. 

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Okay, I'm going to dive in a bit about the Tourette's. DS15 has it, so I know a bit. DD13 has dyslexia, so I know a bit about that, as well, but others have covered the language stuff.

The thing about Tourette's is that it is actually a very simple diagnosis. If the person has both motor tics and vocal tics (vocal includes things like coughing or sniffing and does not have to mean tics with words) for a year,  it's Tourette's.

That's it. For the diagnosis, there is no long testing or searching for underlying root causes. It is just whether the tics are there. So there is not a generally need for a neuropsychological exam due to a Tourettes diagnosis.

UNLESS the neurologist suspects there is a bigger issue underneath that needs exploration. It sounds as if she told you specifically that she suspects there are other things going on and that they are complex enough that the school evaluation will not be able to sort it out. It is very common for kids with TS to also have other life impacting conditions. Here is an article I found about common comorbid conditions. https://link.springer.com/article/10.1007/s40474-016-0099-1

Now, don't get me wrong. I'm not saying that TS is simple. I am just saying that all that you need for the diagnosis is the symptoms. The diagnosis basically says "yes there are tics." Scientists don't know why the tics are happening, at this time, although there are some speculations, which that article also mentions.

I think the recommendation for neuropsych testing is the way for the neurologist to say that she thinks there are other complex things going on that you haven't uncovered yet. I would take that seriously (I'm not saying you are not; just giving you support). The other posters are right that you can figure out some ways to move forward on reading, while you wait for the NP appointment. But I think I would keep the spot on those NP waiting lists and not choose school evaluations instead. The school would be able to give you more testing data and should be able to diagnose Specific Learning Disability in Reading, since you don't have that documented yet. But they are not the ones to go to for figuring out underlying complexities. And the NP would be able to diagnose the dyslexia.

 

Edited by Storygirl
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Did the neurologist suggest anything you can do to help the Tourettes? Because our neurologist suggested medication and a specific kind of counseling. I would hope that your doctor gave you good information and that you already know. But if you would like some details, I'm happy to share.

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So that article says that 80% of people who have both an LD and TS also have ADHD. That is very significant. Do you think ADHD is an issue for your daughter?

Here's an additional short article outlining the links between ADHD and TC and OCD. https://www.additudemag.com/study-adhd-ocd-tourette-syndrome-share-genetic-links/

Okay, here's another one. It's easy to find a bunch of articles about conditions co-morbid with TS when you google. https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pediatric-neurology/conditions/tourettes_syndrome/associated_problems.html

I haven't read all of these before, so I'm perusing for myself. In that Johns Hopkins one, the academic difficulties listed sound eerily like DS15.

Edited by Storygirl
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We lived next door to a family where the little girl had TS (and OCD, which I think is often comorbid?).  She had difficulty learning to read because her tics made focusing on words difficult.  So that might be a contributing factor with you guys, but it sounds like there are significant other issues as well.  

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4 hours ago, Terabith said:

Did she pass the Barton screening?  She sorta screams like a kid who needs LIPS to me.

ok I'll work on the Barton screening tomorrow and see what that looks like now.

 

3 hours ago, PeterPan said:

You need SLP testing. 

The Celf4 was what the original testing was several years ago. I'm going to call slp's tomorrow - that shouldn't be much of a wait list at all.

 

3 hours ago, PeterPan said:

How many more dc do you have? Is it just these two or you have more? I was just curious, no reason. I was trying to figure out how much more you're trying to wrangle here

lol I've got 4 total 🙂 so I've got my hands full! But as I have cut coffee entirely out of my diet, I'm starting to feel better and more on top of things, ironically, so that's helpful!

 

58 minutes ago, Storygirl said:

It sounds as if she told you specifically that she suspects there are other things going on and that they are complex enough that the school evaluation will not be able to sort it out.

Yes - we are wanting to rule out OCD and ADHD inattentive type, along with the dyslexia. 

25 minutes ago, Terabith said:

We lived next door to a family where the little girl had TS (and OCD, which I think is often comorbid?).  She had difficulty learning to read because her tics made focusing on words difficult.  So that might be a contributing factor with you guys, but it sounds like there are significant other issues as well.  

That's interesting - one of the tics she does right now is breathe holding, and she'll do it in-between her words while she talks so it chops her talking up. It masks as "word searching" as I put it - like she's having trouble thinking of what to say. so having the testing done will help us figure out what is language issue and what is not.

57 minutes ago, Storygirl said:

Did the neurologist suggest anything you can do to help the Tourettes? Because our neurologist suggested medication and a specific kind of counseling. I would hope that your doctor gave you good information and that you already know. But if you would like some details, I'm happy to share.

We got some suggestions, the tics we are dealing with right now are not severe or impactful enough to medicate, but we are established patients now with the neurologist so we can go back to her with anything that comes up - and she wants us to come back to her if the other testing shows anything that she can help us with, and we have a list of all that.

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You could google, but I think when you look at the genes it's usually the same genes manifesting lots of ways, whether it's called ASD or Tourette's or ASD or bipolar or schizophrenia or... There's not as much water between them as the DSM makes it sound. So like when I run promethease, a gene will tick and it will say known to be associated with ... and it will list a whole alphabet soup. 

On the plus side, later is not never.

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1 minute ago, mamashark said:

The Celf4 was what the original testing was several years ago. I'm going to call slp's tomorrow - that shouldn't be much of a wait list at all.

As whether they do narrative language testing and what they use. Ask if they own the CTOPP, the SPELT, or the TNL. Ask what they have for pragmatics. When you say pragmatics, they'll know what you mean. Ask if they own something like the TOPS=Test of Problem Solving. 

The CELF has poor sensitivity and under-identifies kids with language disabilities. It also provides models (which someone like my ds can hack) and uses MULTIPLE CHOICE. No problems there, eh? So long as you live life in a multiple choice, modeled bubble, you're great, lol. Idiots. I swear, I mean I really swear sometimes this stuff just... If we as customers knew what was going on, we'd yell. Instead these people get $100+ an hour to run stuff like that. And they're like oh the psychs and schools love it. The same schools that are content to under-identify, not interpret the tests correct per the test metrics, etc. 

Anyways.

Not any random SLP. Just saying. Take your time and ask these questions and keep calling till you find someone who is speaking this language and has answers. Narrative language testing can be done dynamically (on the fly, with how they respond after being read a book) or with a standardized tool like the TNL = Test of Narrative Language or is embedded in something like the TILLs. If you find an SLP doing narrative language assessment *probably* they're gonna be up on the rest. 

Pragmatics you want. Only occasionally will a psych get it done and you would learn a TON of important stuff doing this. You want it. SLDT, the CAPS, the pragmatics subtest of the CASL, plenty of options. 

The CTOPP is your tool to quantify phonological processing. Cranks out working memory, digit spans, etc. too. Does it have vocab? Can't recall. 

If you find the right SLP, they may have all this under one roof. That would be a miracle, but it can happen. But if they bring you in and it's just another CELF, that's so much less informative. There's other stuff they have too (vocabulary, blah blah), but that's pretty run of the mill. 

Anyways, good luck, keep us posted, and I hope you find someone. It will be worth a drive even. 

9 minutes ago, mamashark said:

That's interesting - one of the tics she does right now is breathe holding, and she'll do it in-between her words while she talks so it chops her talking up. It masks as "word searching" as I put it - like she's having trouble thinking of what to say. so having the testing done will help us figure out what is language issue and what is not.

Yes, tell the SLP this!! They have testing for word retrieval, absolutely. The neuropsych did it on my dd. I haven't had an SLP do it on ds, but it exists, yes. And you know it sounds like she's complex. Did you say you're running through Interoception stuff with her? It sounds like she could use some calming strategies. But yes an SLP will be all over this. Does she have untreated anxiety?

Well I hope your next steps turn you up some good answers!

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CTOPP doesn't have vocabulary.  It has phonological processing, some memory, and RAN.  

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14 hours ago, PeterPan said:

The reading disability is a LANGUAGE disability.

Peter Pan, I have a question for you.  In a district I work in, I tutor with Barton for students having difficulty reading.  3 students exhibited many signs of dyslexia and the 4th did not, but her reading progress in school did not progress in testing like they hoped. I was allowed to do Barton anyway and it was working with her. She did have word retrieval difficulties at times, or times when she forgot what she just had just done.

  At different times, these students were finally given an eval for learning disability (of course not dyslexia).  A speech tech 'screened' 3 of the kids and determined a speech eval was not needed. Of course, I found this out when all testing was said and done.

I have reminded the district that a language eval should be given, for the reason you gave above...Reading disability is a language disability!  So I'm asking: When a school district does an eval for SLD, is it normal and expected that a speech and language eval be done as well?   These were the outcomes:

Student #1:  They said his IQ was in the low average range, and was reaching his ability at the time and did not qualify for services. (Sorry, I fully believed he was dyslexic and did not have low IQ and probably had dysgraphia as well.) What Barton we did, did tremendous things for him and he could finally read, but spelling and writing would always be difficult for him.

#2 Was not my student, but related to the above, so I suspect it ran in the family.  He had great difficulty spelling, even the word 'of'. I heard he did not qualify either, but I don't know details, nor do I know if he had a speech eval. Ugh! 

#3 Qualified in reading comprehension and math.  She is in Barton level 4, so as Susan Barton says, after level 3, they are not likely to qualify, unless in another area.  Has good long term memory once the material is 'in there', but not good short term memory, so repetition has been key for her.

#4 Did not qualify for services, yet continues to have low RTI scores (I did not tutor her this past year in Barton). I still suspect language difficulties...

I feel so much for these kids as they move up to middle and high school, where they may not get the help that is needed without an IEP or 504.  You seem very versed on evaluations, so I thought I would ask!  TI do not know what screener they used for speech. Thanks!

 

 

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3 hours ago, ***** said:

TI do not know what screener they used for speech.

Well I don't know every test, but around here they use the CELF, which has known sensitivity issues. With tests you and sensitivity and specificity. So that's how many people you catch/miss and how accurate your hits are. So the CELF has these known issues and some tests are starting to be published with the recommended standard deviations to be used for sensitivity and specificity. They'll actually publish it if those scores are available. However in a district like ours, they're just saying blanket things like 1.5SD, no matter what test, and that means kids get missed.

The CELF has more issues. It doesn't address narrative language at all, and that's an area where these kids will commonly flag. My ds has ASD, so he flags in more things.

You understand this, but not every dc who has a disability will qualify for intervention services under an IEP. They can have the disability but not qualify for services. In our district that's all by the numbers, so the only thing that changes that is bringing in a test that gives the numbers that get kids qualified. So for instance we had a private SLP run the TNL and then the ps SLP bought it to use as well. So she saw it would allow her to identify disabilities and qualify kids. 

But I don't think the school is jumping up and down to do that, sigh. Can't help you on the politics of it. Your school has the amount of discrepancy they want to see and you have to show it on some kind of standardized tool. Then you'll probably be there.

3 hours ago, ***** said:

So I'm asking: When a school district does an eval for SLD, is it normal and expected that a speech and language eval be done as well? 

The form the ps uses is probably from your state (hopefully) and it will hit every area and ask them to check off saying they've eval'd or at least considered whether it needed to be eval'd. The forms vary, but that's the idea. The parent signs that at the planning meeting to begin evals, and it's a legally binding document saying what they'll eval. If they have EVIDENCE that compels them, they'll eval in an area. If no evidence, no evals. So it's nice to say everyone should have certain evals, but you need evidence. You can make a strong case that narrative language deficits should have intervention, so that's a thing you can be seeing that can be evidence to say they need to eval. 

Here's a link to what you'd be looking for on narrative language https://mindwingconcepts.com/pages/methodology  

Edited by PeterPan
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9 hours ago, PeterPan said:

You could google, but I think when you look at the genes it's usually the same genes manifesting lots of ways, whether it's called ASD or Tourette's or ASD or bipolar or schizophrenia or... There's not as much water between them as the DSM makes it sound. So like when I run promethease, a gene will tick and it will say known to be associated with ... and it will list a whole alphabet soup. 

On the plus side, later is not never.

Yes, I absolutely think that there is a genetic thing at play here - I have one with ASD, one with ADHD, one with tourettes and whatever else we find. You go up to the grandparents and we have OCD, go to the great-grandparents and we have more mental health issues. So when my MIL last night was bemoaning why we ended up with 3 who have special needs, my husband told her it's all genetically related. And that these were the kids we were supposed to have, and that our job is to care for them and support them to adulthood as best we can, and that having the diagnosis are helpful in giving us directions to go for that.

I have to decide if I'm willing to open the can of worms that genetics would be. Some stuff I might just rather not know.

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10 hours ago, mamashark said:

 

That's interesting - one of the tics she does right now is breathe holding, and she'll do it in-between her words while she talks so it chops her talking up. It masks as "word searching" as I put it - like she's having trouble thinking of what to say. so having the testing done will help us figure out what is language issue and what is not.

We got some suggestions, the tics we are dealing with right now are not severe or impactful enough to medicate, but we are established patients now with the neurologist so we can go back to her with anything that comes up - and she wants us to come back to her if the other testing shows anything that she can help us with, and we have a list of all that.

Okay, keeping in mind that I know nothing about your daughter or situation, I'm going to offer my opinion anyway.

DS15's tics are mild. Most people would not notice them. We did not even seek help for them, although the tics were a factor as we figured out what ADHD medication he could take (some meds increased tics). Before he started the ADHD meds at age 9, we had not noticed tics ourselves, although in hindsight, I can see that some things were tics, but we didn't realize. We only got the Tourettes diagnosis because the pediatrician noticed and sent us to the neurologist.

So that's the background for my opinion.

There is therapy that might help with the breath holding issue, and it seems like that would be worth pursuing, because the breath holding seems like a big deal, in that it affects her communication.

There are meds -- clonidine and guanfacine -- that help with controlling tics AND ADHD and so could make a large difference. They are low in cost (DS15's clonidine costs about $2 per month) and are not stimulants or controlled substances. They started as blood pressure medications, and they don't come with the concerns that scare people off of taking ADHD meds. And they help tremendously with sleep.

These are low risk and easy things to try. If the tics are bothersome enough to have sought a diagnosis, I wonder why they aren't worth treating. I don't know if that is the neurologist's opinion, or yours. I would not necessarily accept that opinion, if it is coming from the doctors. If there are ways to help, why not try them?

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1 hour ago, mamashark said:

Some stuff I might just rather not know.

Fwiw, it's not as easy to find stuff you don't want to know, stuff that would make you sad, as you'd think. For real most of the genes are going to same something that vague in their listings. Even the supposed cancer genes you hear about on tv are really a lot more iffy. So like if you run your raw 23andme data through promethease, there are going to be so many alphabet soup mental health labels under each gene that you'll be like ok whatever. Now you'd definitely find out if she's carrying genes for red hair for your grandkids, and you might find out how she'll react to marijuana or cocaine, always helpful to know. But the stuff you think will be freaky will be so vague it won't be.

I did find *one* bad gene on *one* of my kids that was in the range of I'm not telling that dc and it makes me sad to know. It's a gene I went looking for only because another person in the family has started expressing it. (early onset hearing loss) So in scads of hours looking at stuff, I hadn't found that but only found it because I looked that much harder for one specific gene. And apparently I wanted to know since I looked. 

Point is I wouldn't trade the HELPFUL ACTIONABLE INFO I've gotten from genetics for not knowing that one, in the scheme of things minor, thing. Yeah it will suck to need hearing aides, but we've got this, we can handle it. But knowing that my kids need vitamin D and 5HTP to stabilize? HUGE. Knowing about the MTHFR and methylation cycle defects so my kids can avoid mental health prescription medications (we'll see, but possibly for ds) and feel better? HUGE. 

You're going to want genetics eventually, so you might as well run it now.

It doesn't sound like your MIL is a safe person to talk to. Yes, she's got a lot she's going to process, meaning she's NOT your correct support person. Didn't your other dc just get his ASD diagnosis? She's thinking hard and dealing with a lot from that. My mother struggled. For my mother, it meant losing her grandson, as he's exceptionally hard for her to have a relationship with. You can, but it takes SO much work that it's just really hard for her, not at all like it was with dd. And they have lots of other feelings. So you need to find your support from someone else, someone safe to talk with. You're going to need someone you can say really blunt things too just to get it off your chest, and your MIL might not be the person, especially if the genes came from her. Well maybe, maybe she sucks it up. I'm just saying be safe. I have a friend I talk to who is like a talking duck. I can say something horrible or how horrible it was and she just LISTENS.

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3 minutes ago, PeterPan said:

It doesn't sound like your MIL is a safe person to talk to.

No, she's absolutely not. And I wasn't even in the room for the conversation because I don't talk to her about anything except the weather and her day.  I can't avoid her, for various reasons, and so I have learned to smile and keep my mouth shut, and they have learned to always have salad on the table when I'm there. She has her own issues, and I have my own issues, and I have safe people to talk to and she is never on my call list.

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Alright - so I found a speech therapist who takes my insurance, and we are scheduled for her to run the CTOPP, TNL and CASL. She said they have about a dozen tests, but these are the ones I said I was interested in - well, I asked for the TNL and the CTOPP, she recommended the CASL as well.

Oh and the Barton screening - she failed A (counted syllables), failed B (counted 2 syllables in everything, which was ironic considering she counted syllables correctly in part A), but passed task C (1 repeat, 2 wrong). 

Edited by mamashark
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12 hours ago, mamashark said:

Alright - so I found a speech therapist who takes my insurance, and we are scheduled for her to run the CTOPP, TNL and CASL. She said they have about a dozen tests, but these are the ones I said I was interested in - well, I asked for the TNL and the CTOPP, she recommended the CASL as well.

Oh and the Barton screening - she failed A (counted syllables), failed B (counted 2 syllables in everything, which was ironic considering she counted syllables correctly in part A), but passed task C (1 repeat, 2 wrong). 

Wow. Sounds like you found a really helpful SLP, so I'm super excited for you!!! And yeah, sigh, deep breath on the screening results. So that explains why she's struggling. So how far out is the SLP? If the SLP is coming up pretty soon (within the next month), personally I would do field trips, other things, and just let that be a baseline before your intervention. That way you have really clear scores, get your diagnoses, and get it going. 

Keep going with that SLP. Like if she has some of the test of writing tests (there are several), do those. Also pragmatics, test of problem solving. etc. The testing will be fatiguing, but you're going to get such good, actionable information that it will be worth it. Don't worry about intervention while you're gathering data, kwim? It's ok to get that baseline. I know you're probably chomping. I hope the SLP is soon for your sake!

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Have you had this dc to an audiologist? While you're waiting for the SLP, I would get that done. Hopefully it turns up nothing, but you would be wise to get it done. Don't pay $$$ doing it. Our university has an audiology phd program so they can do it for free. See what you can find and just get somebody to spend some time and get that done. Does she have any issues with background noise or ever having trouble *understanding* what you said in certain settings? That would be your APD question and then you'd be looking for an audiologist who also does APD testing to screen and decide whether that is warranted.

Edited by PeterPan

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