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#51 Heathermomster

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Posted 09 May 2017 - 10:00 PM

Call the local dyslexia school for testing and referrals. Goggle and see if you have a Scottish Rite Learning Center in town. Scottish Rite tested DS for free and ran the CTOPP, OWLS, GORT, and TOWRE when he was a 1st grader.
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#52 Southern Ivy

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Posted 10 May 2017 - 05:31 AM

I said you couldn't get an auditory processing eval until 8; that's not the same as phonological processing/CTOPP.

You can get the CTOPP through a neuropsychologist evaluation, some speech pathologists, maybe the public school?

They will evaluate her at her age. My warning (having been through it with my 6 yr old) is: depending on her severity/complexity you might not get any answers at this age. My daughter is somewhat mild/moderate so, while there were huge discrepancies that point to dyslexia, her scores were all still within the "normal " ranges for her age. Those ranges are reduced as kids get older. I was told to retest in a year or two.

The dyslexia center should have suggestions/resources.

Oh ok. I misread! Thank you for clarifying.  :thumbup1:

 

The CTOPP is a comprehensive test of phonological processing. When you're saying phonological processing, you mean auditory processing? 

I misunderstood what was said earlier. :) 
Ok, i didn't realize that the CTOPP was the test for phonological processing. I'm piecing it all together slowly but surely! 


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#53 Southern Ivy

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Posted 10 May 2017 - 05:39 AM

Thank you all for your help. I really do appreciate your patience and explanations as I try to figure all this out. :) You all are a valuable resource. 


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#54 OhElizabeth

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Posted 10 May 2017 - 06:19 AM

And it's fine to want to get her hearing tested and have that discussion with an audiologist who specializes in or really gets auditory process! Like that's a really good thing. We went to the audiologist because my ds wasn't responding and was having sound discrimination issues. Both can have multiple explanations. It does happen that people assume one explanation and are horrified later to realize it was another. Since we were able to get that audiology check for $35 (university, discount price with students plus prof), it was really worth it. They got to see the behaviors, and they got to say that it was NOT audiological in nature but was something else beyond their scope. I'm all for that exclusion process!

 

So definitely don't feel bad about pursuing it. You're doing the same stuff I did. We hit vision, audiology, OT, psych. You just work through the layers and find what is specific to your dc. APD problems are common. Really, the *most* common symptom is going to be trouble distinguishing your voice from background noise. 

 

You're doing great. Keep us posted on how it goes. Early intervention is awesome. My ds had so much Barton, so early, that really his reading seems rather unscathed at times. It's hard, but he also has language issues. We also did a lot of RAN/RAS work. That makes it easier for them to just READ when the reading finally clicks. 

 

Are you doing a lot of audiobooks? Number one, absolute best thing you can do, audiobooks. I got my ds a kindle fire (actually we've been through a few of them, oops), and we're talking HOURS a day of audiobooks. The more the better. Turn it on any time she's playing, any time you're in the car, before bed, etc. Aim high on that. Builds their vocabulary and language, so they recognize it as they're learning to read. What gets dyslexic kids, from what I've been told, is that they're not getting the language input from the reading and begin to fall behind their peers. So then, even as you get the decoding to click, they've got this extra hurdle of language and vocabulary to make up. So the more you can do with audiobooks, the more your protecting that area and bringing in what should have been coming from the reading that wasn't. Like maybe she'll be 8-10 before it's like really click, click reading. Audiobooks, audiobooks...


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#55 Southern Ivy

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Posted 10 May 2017 - 11:03 AM

And it's fine to want to get her hearing tested and have that discussion with an audiologist who specializes in or really gets auditory process! Like that's a really good thing. We went to the audiologist because my ds wasn't responding and was having sound discrimination issues. Both can have multiple explanations. It does happen that people assume one explanation and are horrified later to realize it was another. Since we were able to get that audiology check for $35 (university, discount price with students plus prof), it was really worth it. They got to see the behaviors, and they got to say that it was NOT audiological in nature but was something else beyond their scope. I'm all for that exclusion process!

 

So definitely don't feel bad about pursuing it. You're doing the same stuff I did. We hit vision, audiology, OT, psych. You just work through the layers and find what is specific to your dc. APD problems are common. Really, the *most* common symptom is going to be trouble distinguishing your voice from background noise. 

 

You're doing great. Keep us posted on how it goes. Early intervention is awesome. My ds had so much Barton, so early, that really his reading seems rather unscathed at times. It's hard, but he also has language issues. We also did a lot of RAN/RAS work. That makes it easier for them to just READ when the reading finally clicks. 

 

Are you doing a lot of audiobooks? Number one, absolute best thing you can do, audiobooks. I got my ds a kindle fire (actually we've been through a few of them, oops), and we're talking HOURS a day of audiobooks. The more the better. Turn it on any time she's playing, any time you're in the car, before bed, etc. Aim high on that. Builds their vocabulary and language, so they recognize it as they're learning to read. What gets dyslexic kids, from what I've been told, is that they're not getting the language input from the reading and begin to fall behind their peers. So then, even as you get the decoding to click, they've got this extra hurdle of language and vocabulary to make up. So the more you can do with audiobooks, the more your protecting that area and bringing in what should have been coming from the reading that wasn't. Like maybe she'll be 8-10 before it's like really click, click reading. Audiobooks, audiobooks...

Good to know!! I will start looking at audiobooks! With our small town, our drives aren't long, but Sundays are great for our hour drive to church. I'll make sure we start on those quickly. 

What is RAN/RAS?



#56 Southern Ivy

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Posted 10 May 2017 - 11:15 AM

Just some examples of what the kiddo is doing: 

https://drive.google...iew?usp=sharing

 

https://drive.google...iew?usp=sharing

 

 

For the W picture, I was VERY obvious with the sounds. She was very confident in her (very wrong) choices. 
The other, I asked her what sound the pictures started with - and was very blatant with the sound. (That's the green crayon.) The purple crayon is what I said "T makes the sound t, t, t as in ____________?" (She's used to the chants at school, so I was hoping she'd at least remember that. )


Edited by Southern Ivy, 10 May 2017 - 11:23 AM.


#57 OhElizabeth

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Posted 10 May 2017 - 12:21 PM

If you want a little bit of an expensive suggestion, I would be inclined to get AAR pre and see what happens. I'm not saying it will solve your problem, because if it's dyslexia it probably won't. I just think there's a lot of wiggle room in there from Abeka workbooks to a dyslexia diagnosis. AAR pre would be more explicit, more hands-on, more enjoyable, and you could just see what happens. It would be something to do. The dc's *response* to curriculum at increasing levels of intervention is as telling as what's actually happening. Like I know you're frustrated, but I'm not seeing anything hands-on there, anything that is really explicitly teaching phonological processing. Kids can have other labels besides dyslexia and need some more explicit instruction. My dd was in that category. A lot of kids with ADHD (which used to be lumped together with dyslexia diagnostically, btw) will be crunchy. My dd at 4 was still pretty crunchy. She's now an AMAZING reader.

 

I'm not saying it will solve it, just that I personally would do some stepped up intervention. In the ps they call it RTI. What they mean is there is more explicit instruction that isn't all the way to therapy level. With my ds, when things weren't clicking, I got AAR pre. It's utterly adorable. It quickly got too hard for him and he was overwhelmed. However just the fact that we TRIED something more explicit, more multi-sensory, even though it couldn't work for him, really showed a lot, kwim? 

 

Given how young she is (newly 5?) and given that they're probably not even going to be willing to consider a dyslexia diagnosis before 6, doing some stepped up, multi-sensory instruction would be good. AAR pre would work. I haven't used it, but Happy Phonics is in that vein. 

 

RAN/RAS = Rapid Naming. It's a lagging indicator of dyslexia, because dyslexics will typically have quite low RAN/RAS. We worked on it aggressively to good benefit. It improves their fluency and ability to get the words out as they decode. The CTOPP has multiple ways it tests RAN/RAS, so I would wait on intervening until you get a baseline.


Edited by OhElizabeth, 10 May 2017 - 12:21 PM.

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#58 OhElizabeth

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Posted 10 May 2017 - 12:25 PM

The other thing I can't tell from the worksheets is what the actual errors are. You're showing the final result, but could it be a visual memory issue? If someone has poor visual memory, they might not remember the shapes of the letters. That's why you're getting the eye eval, yes yes. But for actually being evaluative about this, we want to eliminate factors. So for the CTOPP, the phonological processing will be aloud and will involve auditory discrimination. That's what you're wanting to distinguish. 

 

There are some online lists for phonological processing developmentally. For instance, you'll look at whether they can clap to match the number of words in a sentence. Then clap syllables. Things like that. The CTOPP will look at that too. I wouldn't like super therapeutically, just saying it's stuff you can try with her and see what happens.


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#59 Southern Ivy

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Posted 10 May 2017 - 01:34 PM

That makes a lot of sense. The lack of hands-on and the tons of paperwork is a reason why I dislike A Beka. (I was teaching at the time, so needed the hours the school provided.) We were considering a private school for her, but they do A Beka and I know that that will not work for her now. I will talk to DH about getting AAR pre or Happy Phonics. He's concerned too, so I don't think it'll be an issue. :) 

I taught 4th grade for several years, so I am comfortable doing RTI for those levels, but this reading stuff is throwing me for a loop. :)


You're a fount of knowledge. Thank you. 



ETA: 
I called the dyslexia center. She told me they'd be happy to do the CTOPP, but she thought it would probably be wiser to go to the neuropsychologist who works with their group. She said he would be able to do an IQ test, the CTOPP, and several other things to really narrow down what is going on with her. Opinions? 

**She also had a tone in her voice when I mentioned the developmental optometrist we were going to go to. I barely caught it, but it as there. A few pointed questions later and I don't think we will be going that route right now. 


Edited by Southern Ivy, 10 May 2017 - 02:33 PM.

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#60 OhElizabeth

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Posted 10 May 2017 - 03:07 PM

I think it's wise to have feedback on the *particular* dev. optom. you're going to. They totally vary. I think it's fine to do a regular eye exam and ask them to SCREEN for developmental issues. Ours will do that. I would not just go sign up for a full developmental vision exam (which can be $$$$) without having met the person, heard feedback, and had a screening indicating it was warranted. And if you get in there for that initial exam (vision, glasses, you know, the basics) and the guy won't even screen or is a jerk or says bogus things or gives you the creeps, then you don't go back, kwim? But that around here is like $60-80. 

 

It's totally reasonable to wonder if she needs glasses and whether anything would show up on a screening. It would be a conservative way to go about it. But I agree I would do it with a dev. optom. who has a good reputation in the community. Just having a bad reputation with one person could mean anything.

 

Well keep us posted on how it goes. :)



#61 OhElizabeth

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Posted 10 May 2017 - 03:11 PM

On the psych thing, I think you want to call the psych they suggested and talk with him/her straight about when the best time is to do the evals. The psych might really catch some things that are brewing that maybe aren't coming out in this thread. A neuropsych in particular can catch motor planning problems, all sorts of things, do referrals. It can be really helpful. And they'll be able to help you sort out when to do them. My ds was going to be within a month of being 6 before we could get in, so we waited the month. But just see what the psych thinks. He might say come in pronto, or he might suggest doing the baseline CTOPP and then doing the full eval later. Just see what he says, kwim? He'll ask you questions and there might be something that flags to him to indicate one way or another. 

 

Does she have any motor planning issues? Anything going on physically that catches your attention?


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#62 Southern Ivy

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Posted 10 May 2017 - 03:28 PM

I think it's wise to have feedback on the *particular* dev. optom. you're going to. They totally vary. I think it's fine to do a regular eye exam and ask them to SCREEN for developmental issues. Ours will do that. I would not just go sign up for a full developmental vision exam (which can be $$$$) without having met the person, heard feedback, and had a screening indicating it was warranted. And if you get in there for that initial exam (vision, glasses, you know, the basics) and the guy won't even screen or is a jerk or says bogus things or gives you the creeps, then you don't go back, kwim? But that around here is like $60-80. 

 

It's totally reasonable to wonder if she needs glasses and whether anything would show up on a screening. It would be a conservative way to go about it. But I agree I would do it with a dev. optom. who has a good reputation in the community. Just having a bad reputation with one person could mean anything.

 

I Well keep us posted on how it goes. :)

Right. The center director told me that the optometrist is great with kids, but he's been known to push glasses on kids who don't need them and essentially push his services, regardless of the need. I already know that she doesn't need glasses. She did a general eye exam at our family optometrist, but they don't do the screenings for developmental issues from what I understand. 

He was the only one I found in the area, but I'll look again. 

 

On the psych thing, I think you want to call the psych they suggested and talk with him/her straight about when the best time is to do the evals. The psych might really catch some things that are brewing that maybe aren't coming out in this thread. A neuropsych in particular can catch motor planning problems, all sorts of things, do referrals. It can be really helpful. And they'll be able to help you sort out when to do them. My ds was going to be within a month of being 6 before we could get in, so we waited the month. But just see what the psych thinks. He might say come in pronto, or he might suggest doing the baseline CTOPP and then doing the full eval later. Just see what he says, kwim? He'll ask you questions and there might be something that flags to him to indicate one way or another. 

 

Does she have any motor planning issues? Anything going on physically that catches your attention?

Her cutting skills are sorely lacking and she can be quite messy when eating, but aside from those (and her potty training issues), I don't notice anything out of the ordinary. 
 

The director gave me the psych's email address. She said that if I call, I would have to wait 3 mos to get in, but if we email and say we were referred by the center, they can typically get us in within a month. I'm going to email him and we'll see where it goes from there. :) 



#63 OhElizabeth

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Posted 10 May 2017 - 10:22 PM

What potty training issues? That can be a retained spinal galant reflex. 



#64 OhElizabeth

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Posted 10 May 2017 - 10:26 PM

Here's the thing to think through hard and then talk through with the psych really honestly. If you do the evals and it turns out there's like DCD or something that really need to be caught early, you're golden. If you do the evals and the psych is like sorry, could have told you more at x age, that's really hard on your budget and your marriage, kwim? I know when the first psych blew us off about ds (who later got an ASD diagnosis, a triple -confirmed ASD diagnosis) that was really hard. It was like see, you wasted our money, the problem is all you, blah blah.

 

So just talk it through with the psych and don't be too gungho. Questions are free, kwim? An OT eval around here is $180 and just that CTOPP you can get around here for $75. I can't get into a neuropsych for less than $2500. Seriously. Now if it's DCD or something that can be diagnosed sooner, sure. But if you pay $2500 now and get told they won't diagnose for another year, whoever paid for that won't be happy. Your insurance won't pay it again in a year.

 

I would want explanations. It's just tricky to balance the money and timing.

 

And I agree, the over-prescribing by the eye doc sounds creepy.


Edited by OhElizabeth, 10 May 2017 - 10:27 PM.


#65 Southern Ivy

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Posted 11 May 2017 - 09:02 AM

What potty training issues? That can be a retained spinal galant reflex. 

She was not able to pee on the toilet until after 4 years old. I think she figured it out a few months after. She could not poop on the toilet until 4 years, 8 mos. So, just around Christmas time, she finally figured it out. She would try, but it just never clicked until she was at school one day. Then, she could manage at school, but it took a few more weeks for her to be able to go at home. Not sure what the difference was, but it frustrated her that she could poop at school, but not home. 



#66 Heathermomster

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Posted 11 May 2017 - 09:46 AM

OP, I'm not clear about something.  Is it your intention to homeschool, or do you plan on taking the IEP route?  

 

You may not be aware of this, but private and public schools regularly disagree with testing and whatever teaching/accommodations recs a neuropsych report might provide.  My son's private school expected a full educational eval with a neuropsych report every three years, but then did not always abide by the recs in the report because it was a religious institution and they were not bound by Federal law.  Public schools may decide not to act based upon a report because they might not see a disability as severe enough to warrant IEP or they want their own teachers and testers to observe.  

 

Also, I don't see the point in paying big money to a professional unless they can legally test and diagnose.  As you are calling people, ask what they can and cannot provide.

 

My DS was evaluated by a developmental op's office wearing goggles with a machine that tested eye movements.  At that time, we discovered that DS and I have exophoria and that prism eyeglasses would benefit us.  Son's exophoria is mild while mine is severe.  I have suffered severe eye strain my entire life but have adapted to it.  Anyhoo..DS wore prism lenses for a year, but it wasn't really helpful.  I wear contact lenses and bifocals for up close work.  I expect that any developmental ped pushing glasses is actually pushing prism lenses.   

 

Lastly, developmental motor issues affect learning, behavior, and vision.  A good OT can evaluate your child and determine whether she needs sensory work.   Both of my children have worked with an OT and later a ped PT.  The ped PT work had a huge impact on my son's growth and development.  Honestly, my greatest mistake was not getting him to a really good OT/ped PT person when he was younger.   

 

 

 


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#67 Southern Ivy

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Posted 11 May 2017 - 10:47 AM

OP, I'm not clear about something.  Is it your intention to homeschool, or do you plan on taking the IEP route?  

 

You may not be aware of this, but private and public schools regularly disagree with testing and whatever teaching/accommodations recs a neuropsych report might provide.  My son's private school expected a full educational eval with a neuropsych report every three years, but then did not always abide by the recs in the report because it was a religious institution and they were not bound by Federal law.  Public schools may decide not to act based upon a report because they might not see a disability as severe enough to warrant IEP or they want their own teachers and testers to observe.  

 

Also, I don't see the point in paying big money to a professional unless they can legally test and diagnose.  As you are calling people, ask what they can and cannot provide.

 

My DS was evaluated by a developmental op's office wearing goggles with a machine that tested eye movements.  At that time, we discovered that DS and I have exophoria and that prism eyeglasses would benefit us.  Son's exophoria is mild while mine is severe.  I have suffered severe eye strain my entire life but have adapted to it.  Anyhoo..DS wore prism lenses for a year, but it wasn't really helpful.  I wear contact lenses and bifocals for up close work.  I expect that any developmental ped pushing glasses is actually pushing prism lenses.   

 

Lastly, developmental motor issues affect learning, behavior, and vision.  A good OT can evaluate your child and determine whether she needs sensory work.   Both of my children have worked with an OT and later a ped PT.  The ped PT work had a huge impact on my son's growth and development.  Honestly, my greatest mistake was not getting him to a really good OT/ped PT person when he was younger.   

I would like to homeschool. DH feels that my personality and my daughter's would clash terribly, so he wants her in a school setting. I think, though, that a lot of the issue is push back from not understanding and frustration. I told DH this past weekend that should we find that it's more than "just developmental and she just needs more time", then we would sit down and really discuss what is best for her in the long run. 
Having taught in PS before, I'm really not keen on her having an IEP and being in the schools.  I have great friends who are SPED teachers, but having seen what I've seen just in my few years of teaching, I am hesitant to go that route. 
I assumed that, if DH still doesn't agree to homeschooling, having an official diagnosis would at least help get the IEP process started, but I guess that was a faulty assumption. (You would think I would be aware of this, but all of my kiddos came to me with IEPs already in place, so I never had to deal with the initial process, just the semester meetings.) 
 
Can I ask you to elaborate on them being able to legally test/diagnose
I guess I'm confused as I would assume a neuropsychologist would be able to do that.
Or...Are you referring to the dyslexia center? I know they are affiliated and housed within one of the local hospitals, but they are more of a tutoring service and advocacy center. They can do the test to give the parents results, but they are not able to give an official diagnosis. 
Also, when I'm asking, what should I be looking for in regards to what they can provide? 

That is interesting about the prism lenses. I would have just assumed the dr was just pushing regular glasses. 

Do you typically need a referral to go to an OT? 

So many different things to think of and pursue. This could easily get overwhelming!


Edited by Southern Ivy, 11 May 2017 - 10:49 AM.


#68 Storygirl

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Posted 11 May 2017 - 11:02 AM

The private evaluations can serve as proof that the child is suspected of having a disability. By federal law, the public schools must evaluate all children who are "suspected" of having a disability. The schools can also take the private evaluations into account, but they will run their own. I have not yet heard of a public school that will accept documentation from an outside evaluator without also doing their own testing.

 

So if you pursue private testing, you would ALSO need to go through the public school for an IEP if she ends up enrolling in public school.

 

So why do the private testing, if you would have to repeat testing through the school? Because the private testing gives you more information and actually can provide a better diagnosis. The school only has to determine if the student needs special education assistance to access their education; they do not have to get to the root of what is causing the problem.

 

My neighbors have kids with SLDs diagnosed through the school but have had no private testing. At their meeting to discuss the evaluation results, the mother looked at the test scores and asked what was causing the problems. What was the explanation for the difficulties? The school psych said that he couldn't tell her that. He could only tell her that her daughter had SLDs in reading, writing, and math. 

 

I was the one who told the mom (gently) that her daughter had signs of dyslexia. She later returned to the school to insist that her daughter get help from the one teacher on staff who was trained in OG. She did not know to push for that without knowing that dyslexia was a likely cause.

 

The parents feel they are still in the dark about what their kids need. She has mentioned that she is impressed that I understand so much about my kids' conditions. What is the difference? My kids have had private NP evaluations that have explained the root causes of their problems, and I have been able to do research and become more informed.

 

So I am really in favor of the private evaluations, even if you will eventually need the ones from the school. I agree with heathermomster that you want as many answers as you can get. Someone -- like the school psych -- who can test but not explain, will not be able to give you fully satisfying answers.


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#69 Southern Ivy

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Posted 11 May 2017 - 11:16 AM

Thank you, Storygirl. That makes sense. 
I am going to email the neuropsych today to see about getting fast-tracked since I was referred by the dyslexia center. The director told me to request an evaluation and let him know what I'm seeing. 

"Some of my concerns are:

My daughter Riverlyn turned 5 in April. She has been in preschool since she was 3 years old. She has had good exposure to the alphabet - they frequently address the names and sounds of the letters. She has also been working one-on-one with her teacher for the last 5 months. However, she still only has three letters she can readily identify by name after two years. 
She can only say the name of the letters in her name if she spells it out loud to get to that letter. 
She seems to have no concept of the letters having sounds. 
She is unable to rhyme. 
She is unable to choose the matching pictures when given initial sounds (ie: During her kindergarten screening, she was asked “What picture starts with the “b - b- b” sound?” Riverlyn chose the cat. The teacher asked "Do you hear "B-B-B in CAT?" Riverlyn stated that yes, it says b.) 

She has verbally expressed her frustrations over not knowing her letters and sounds when her friends already know them. I don’t believe it’s a lack of interest. However, I’m concerned about her going into Kindergarten and the issues just being brushed aside as “she’s just not ready yet”.


I am not sure if these are worth mentioning, but when she was born, the nurses had to work on her for several minutes to get her breathing. Her Apgar was fine, but my mother stated that they had to massage her quite a bit to get her breathing initially. 
She was delayed with potty training - she was able to pee consistently on the toilet at 4 years, 2 mos, but was unable to poop on the toilet until 4 years, 8 mos. 
We have also questioned the possibility of ADD/ADHD based on her tendency to become distracted and she has a very hard time sitting still even for short periods of time, frequent outbursts and impulsivity. "

I'm not sure if I should add anything else? 

 


Edited by Southern Ivy, 11 May 2017 - 11:24 AM.


#70 Heathermomster

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Posted 11 May 2017 - 12:06 PM

Some testers will partially test and tell parents to come back in a couple of years.
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#71 Heathermomster

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Posted 11 May 2017 - 12:55 PM

I didn't answer all your questions...You will likely need a referral for OT, but that is no big deal. The OT's office can tell you what they need to see. Our ped faxed over a document to be signed. OT might even accept a ref from the SLP. Given the speech work, unusual birth history, and potty issues....speak with your insurance company.
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#72 Southern Ivy

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Posted 11 May 2017 - 01:39 PM

I didn't answer all your questions...You will likely need a referral for OT, but that is no big deal. The OT's office can tell you what they need to see. Our ped faxed over a document to be signed. OT might even accept a ref from the SLP. Given the speech work, unusual birth history, and potty issues....speak with your insurance company.

Unfortunately, our SLP moved to St. Louis. :( Makes me sad. 
I'll be calling the insurance company to talk about coverage for the OT and psych.  

I wish I had thought of addressing all of this when I took her for her well-child last month. Both our DO and NP at the clinic are phenomenal and trust me when I state there are issues, so I don't think a referral will be an issue. I may just be able to call. 



#73 emmaluv+2more

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Posted 11 May 2017 - 03:34 PM

Unfortunately, our SLP moved to St. Louis. :( Makes me sad.
I'll be calling the insurance company to talk about coverage for the OT and psych.

I wish I had thought of addressing all of this when I took her for her well-child last month. Both our DO and NP at the clinic are phenomenal and trust me when I state there are issues, so I don't think a referral will be an issue. I may just be able to call.


Would you mind divulging where you are located? You mention St. Louis so I'm curious as to how close you are to me. I might have some suggestions depending on where you live.

#74 OhElizabeth

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Posted 11 May 2017 - 04:11 PM

YES the np will care about the situation around her birth. It could be significant. I would start looking more at her development and motor planning. Collect more dots on things like when she learned to walk, crawl, how she crawled, does she point, how she does on the playground or with typical child games involving movement, etc. 

 

Who mentioned SLP? She has speech issues? Needed therapy? If so, has that testing been updated? They look not only at articulation but also language. The np can run language too. It just gives you lots of dots.

 

How is her speech now? My ds has apraxia, and that can be caused by oxygen deprivation. It would be an explanation for problems that don't resolve with traditional speech therapy, etc.

 

Any time you're having the discussion on what is bloom time vs. what to intervene on, it's significant. You're right to take this seriously. It's not that there might be some dyslexia. It's that the phonological processing problems PLUS the motor planning issues PLUS the developmental delays are significant. That's why you're going to a np and not waiting. If it were only dyslexia, no motor planning issues, no developmental questions, you might want till later, no biggee. With that list of what you're seeing, you're right to pursue it.

 

Have you seen the post about waiting on evals and likening it to a cake? I'll try to find it. Nothing like a little controversy. :D Seriously, it's something people struggle with, have opinions on, etc. Information is your friend. What you do with it is your choice. 

SaveSave


Edited by OhElizabeth, 11 May 2017 - 04:16 PM.

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#75 OhElizabeth

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Posted 11 May 2017 - 04:13 PM

Hauling this over from another thread where I pasted it from another thread. http://forums.welltr...inar/?p=6541245

 


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#76 OhElizabeth

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Posted 11 May 2017 - 04:14 PM

I'm pasting in here the Open Letter Laurie4b wrote years ago.

 

This is an appeal from the heart to my sisters and brothers in the homeschooling community. Many children and families in the homeschooling community are needlessly suffering because of some of our widely accepted beliefs that are closer to myth than to reality. The children that I ache for are those with learning problems. You may prefer to call them learning differences or disabilities, but these are kids who are not learning at the expected level for their age group even with adequate instruction. The advice often given by the homeschooling community when the mother or father begins to search for answers can lead to heartache. 

To simplify, I d like to use the analogy of a cake recipe. Often there are variations that change the flavor of a basic recipe. To keep this simple, the gender of the parent will be female, and the child male. 

The basic recipe calls for: 

One child, somewhere around the age of 5-6 eager to learn. Unbeknownst to anyone, he has specific learning disabilities. 

One homeschooling mom, wanting to provide the very best in education for her child, eagerly looking for curriculum suggestions, reading books, optimistic about what she can provide. Like every loving parent, she wants her child to be normal and it will be sorrowful to her to find that her child has an actual problem, that he is not just like other kids. 

Please note: mom and student are the same in either variation. It s the way the homeschooling community responds that changes the outcome of the cake. 

Variation 1: Heartbreak cake 

Once the mother begins to notice, or even intuit problems, she begins to ask around for help. This particular cake calls for a homeschooling community that will add the following: 

2 scoops of advice such as better late than early, or many kids don t click till age 10-11 

1 cup of mistrust of professionals; for those who like a less spicy version, this can be the do-it-yourself-ism that is a strength at times of homeschooling;for a spicier version, add fear that that CPS will end up involved if you pursue help 

Make sure the homeschool community bowl is free of any oil of early warning signs of learning disabilities. Even a small pinch of this can result in celebration cake instead (see below) 

7 teaspoons of encouragement to switch curriculum as the answer 

If the batter begins to bubble, continue adding reassurances that her kid will eventually get it and be just fine; if that still doesn t work, add a few more tsps. of encouragement to switch curriculum 

Add one scoop of fear of formal labeling. Natural labeling will occur as the cake bakes over the next few years. (Choice of flavors is typically determined by the child; most common variety is stupid ) 

Bake another 4-6 years or longer if desired, until age 10-12 or longer, waiting for the click. 

If there is no click, you ll have heartbreak cake: a child who has labeled himself stupid, bad, and /or weird and who feels so bad about himself that the original LD is no longer the major problem; a child who may have passed the optimal window for remediation; or who has given up. This cake will likely be glazed by deep parental guilt. * (Note: if you ve baked this cake and didn t mean to, good news at the end. I am in no way condemning you as the parent. I am trying to prevent other heartbreak cakes.) 

Variation 2 : Celebration cake: 

To the same basic recipe, as the mother begins to notice, or even intuit problems, and begins to ask around for help, this cake calls for a homeschooling community that will add the following: 

10 scoops of affirmation to trust your own sense of things as a mother and teacher that something is wrong, even if you can t put your finger on it 

1 scoop of information about early red flags of learning disabilities 

3 cups of networking about effective therapies and strategies 

2 spoonfuls of encouragement that seeking help is not a sign of failure, and that professionals can be a homeschoolers best friend 

No traces of better late than early or late bloomer myths oil in the bowl; this can cause celebration cake to not peak to its highest potential and to revert to heartbreak cake. 

If you see traces of the myth oil above, add one Pascal s wager: if there is nothing wrong, and you get an evaluation, you will have wasted only time and money, and gotten some reassurance. If there are specific learning disabilities present, and you wait till it clicks, you cannot give your child back those lost years, your child will likely have emotional repercussions, you may well have missed the best window of opportunity for remediation, and your child s future may be negatively impacted. Which is riskier? 

If fear of labeling begins to emerge in the batter, add 1 scoop of reality: if your child is different, he will be labeled, by himself and his peers, at least. His labels will be stupid, bad , and/or weird . Adults may throw in lazy or disobedient . The formal labels of learning disability, sensory integration, Asperger s etc. explain what is happening, help the child know he isn t uniquely defective and help you identify strategies. 

(((hugs))) to a parent who may be facing the grief of acknowledging that her child is not normal 

Baking time: no longer than age 7 to begin the process of seeking help; bake for shorter period if problems show up in preschool; after this initial period, turn the heat down slightly and bake as long as it takes, using all the strategies gathered formally and informally, professional help and whatever else it takes 

Voila! Celebration cake! A child who would have struggled through life under other circumstances, but who in the very special oven of homeschooling has had his strengths emphasized, and his education tailored specifically to him. He may have totally overcome his learning disabilities, or he may have been helped to learn effective strategies to navigate around them. 

Some notes: Following the notes are some early warning signs 


If you are a parent reading this, and you realize that you have a heartbreak cake on your hands, I know that you will grieve. Please don t spend a lot of time in guilt. There is still much that can be done. I believe in a God who can redeem even our mistakes and make something beautiful happen. But if you ve got a child who is 8, 9, 10, 11, 12, 13 . and you are just realizing that there is not going to be the magic click run, don t walk, to get help. Please get an evaluation, and if you are starting this process at this point, consider some professional tutoring or coaching to help you get things on track. 
A book that you will find encouraging: One Mind at a Time by Mel Levine. Overcoming Dyslexia by Sally Shaywitz is another that is helpful, but you ll have to ignore her belief that only professionals can help a child learn to read. Please also consider putting the energy that you might have put into guilt into preventing this from happening to other families. 

If you are a parent beginning to teach a child to read, check out Overcoming Dyslexia from your library. I think it should have been better titled, Preventing Reading Problems. It will have some useful information for you, too. 

If you are a parent reading this, and you sense you could have heartbreak cake in the making, please get some help. Here are some places to start: 

Where to go for help: Post on the special needs board; you ll find the moms and some professionals who post there very helpful. If you suspect something on the autism spectrum, developmental disabilities, or something very unusual, see if there is a Center for Development and Learning near you. These are often associated with teaching hospitals, and can be one stop shops. If your child demonstrates oversensitivity, stimulus seeking, fine motor skills problems, and/or physical clumsiness, go to an occupational therapist. Problems in speech and language, or for young children having problems with rhyme, see a Speech and Language Pathologist. Learning disability: some psychologists, reading specialists, educational evaluators all can do some of the relevant testing. For reading disabilities, getting an individual achievement test such as the Woodcock Johnson, or Woodcock Reading Mastery Test should be in the $75 range, and give you some good information. The public school system provides free testing for children not yet of school age. I believe it is up to the state or in some states, local districts, as to whether they will test school age children who don t attend. I ll post a link of relevant federal law that also includes a list of advocacy organizations by state. 

~~con't~~


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#77 OhElizabeth

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Posted 11 May 2017 - 04:14 PM

The Late Bloomer Myth: I know I ll get a lot of flack for calling this a myth. I know people will recount how they waited and their child suddenly clicked at age 10. 

In the a longitudinal study of over 400 children that has been running for over 20 years, cited by Sally Shawitz in her book, Overcoming Dyslexia, there was no evidence found of this. On the other hand, prevalence of dyslexia was relatively high. They tested their sample at the beginning of the study and found that as many girls as boys have dyslexia and that about 20% of their sample met the criteria. (Studies using school identification for the criteria set the percentage lower and may reflect bias related to behavior rather than reading issues. ) 

My own experience is consistent with this. For a number of years, I administered individual achievement testing for the homeschool community (required in our state). I probably tested about 50 kids per year, and saw many of them year after year, so I had a chance to track their progress. You would think that I would have seen many late bloomers if they are as prevalent as it appears on homeschooling boards. At first when I thought about this, I remembered 3 (out of probably a total of around a hundred different kids). Then as I thought more, I remembered what I knew of their educations (I knew all the moms.) All of them were relaxed homeschoolers, who believed the late bloomer myth, and taught accordingly. In other words, believing that the time for clicking had not yet arrived, they relaxed their teaching. I believe that could well have had something to do with the late blooming in hindsight. (As an aside, 2 of the 3 moms ended up having another child who never bloomed because of LD s. They are now working hard (and spending megabucks) to get their children on track. 

I asked a friend of mine who s taught public school in 3rd-5th grade for 28 years how many kids she s seen who struggle through 1st and 2nd and then suddenly click in 3rd-5th grades. She s known none. 

I think it s time for the homeschooling community to take a good, hard, logical look at the belief that it s okay to wait until a child is 10 or 11 before worrying about anything being wrong. 

On professionals: Seeking help from a professional does not mean that you are relegating control of your child s schooling;rather, you are getting a consultation to help you make the best decisions you can, and be the best teacher you can. You can decide to let a professional intervene, as in tutoring, or you can just make use of their data. You can decide whether what she is saying makes sense or not for your child. Some people fear that seeking professional help increases one s chances of being reported to CPS. While I think there is reason to take into account the rather unchecked power of CPS, I think we can get a skewed perspective of risk because in the homeschooling community, many hear about HSLDA s horror stories, but we don t get a newsletter with all the positive contributions professionals make in the lives of homeschooling children. Your best bet is to know your professionals. Ask around in your community and learn about people s reputations. You might try contacting HSLDA to see if they have suggestions in your area if that would make you comfortable. 

In recommending making early use of professionals, I am not saying that networking with other parents is not also an excellent source of information and support. I am saying that we shouldn t avoid professionals. 

~~con't~~


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#78 OhElizabeth

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Posted 11 May 2017 - 04:15 PM

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

Early warning signs: (This list includes warning signs for conditions other than simple learning disabilities 

Preschool: Look for clusters of symptoms </i > 

Social differences: if your child does not have many friends, does not seem to know the rules for playing, if other kids don t seem to like your child, or if there is not normal eye contact. Other children are often a very accurate indicator of differences. 

Language differences: delayed talking, talking in stock phrases, using an odd tone of voice, echoing what people say, inability to follow multi-step instructions, flat tone of voice when singing or reciting 

Physical differences: toe walking, chronic constipation or diarrhea, chronic difficulty falling or staying asleep, frequently slumps or falls off chair when sitting at the table (may look like this is on purpose), physically clumsy, toe walking, difficulty with gross motor skills, high pain tolerance 

Difficulty with fine motor skills (these are sometimes delayed, particularly in boys, but if there are any other flags, have them evaluated) 

Over sensitivity to light, sound, clothing (tags, etc), aversion to several smells, picky eater 

Stimulus seeking: impulsive, hyperactive, always into mess, likes swinging, spinning, makes constant noise, etc. 

Emotional/behavioral: behavior is not responsive to normal disciplinary measures, high level of anxiety, hysteria, crying, and temper outbursts 

If there is a cluster of these flags seek help immediately and keep seeking help until you get an explanation that accounts for your sense of what s not right. Some conditions can be completely remediated , without drugs, if treatment is pursued early enough. 

Preschool readiness: 
Lack of awareness or enjoyment of rhyming, does not know nursery rhymes even if you read them to her, lack of interest in writing own name, messy coloring (scribbling), lack of interest in oral memory games (I m going on a picnic and bringing a . ) or visual memory games (concentration), cannot find visual similarities in like things , still talks baby talk or transposes sounds in words: aminal, emeny, aks, pacific (specific), stumble over sounds trying to pronounce new or long words. (These are all indications of learning disabilities) 

Beginning instruction: 
Has difficulty with associating letters of the alphabet with sound, difficulty with phoneme awareness (cannot rhyme, cannot tell you how many sounds are in dog; can t tell you what stop without the s sound would be: See Reading Reflex or Overcoming Dyslexia for short list ), grossly deficient motor skills (not just a dislike of writing, but very distorted letters, drawing ability behind other children his age), can t get 1:1 correspondence needed to count, etc. (These are all indications of learning disabilities) 


If your child is not progressing in any one of the 3 R s by age 7 , it s wise to seek an evaluation. They can be done sooner. Your child may be progressing, but your gut tells you that progress is slower than it should be or more of a struggle than it should be. (This assumes you are providing consistent instruction.) (These are indications of learning disabilities). 

Why I am writing this, and who am I? I m writing out of concern for kids with learning disabilities not being served well some prevalent beliefs in the homeschool community. I m a former educational and children s mental health professional, a former foster mother of two kids with learning differences, and the mother of two biological kids with learning differences. I have incorporated information from current professionals I know, and many, many helpful suggestions from other mothers of children with special needs on the special needs board. Though I ve done the best I could, as I suspect others have, I, too, have made mistakes in waiting (in our case till age 7). 

A huge thank-you to you, SWB, for maintaining these boards. The advice and direction I have received on the special need board has totally changed the life of my most severely affected child. I might still be searching for the right information, might still be wondering if I was overreacting or whether there was something wrong. 

Again, I want to repeat that none of what I have said is intended to be condemning of a parent with a child with special needs, whatever decisions you ve made. I believe that most parents do their very best with the information available to them. . 

I am intending to challenge some belief systems in the homeschooling community at large in the hope that moms like you and children like yours have the best outcome possible. I am aware that challenging widespread beliefs will create conflict, which I would prefer to avoid. However, if this information helps even a few moms and their children with special learning problems or other special needs, I m taking a deep breath and ducking! 

Thanks to the folks on the special needs board who have helped me hone this. Please head over there if you have questions that you want to start exploring. This post is already very long and I couldn t include everything. 

 



#79 Southern Ivy

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Posted 11 May 2017 - 04:37 PM

Thank you, Elizabeth. 
Currently putting out a work fire, but I'll come back and read (and answer your SLP questions). 



#80 Southern Ivy

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Posted 11 May 2017 - 04:39 PM

Would you mind divulging where you are located? You mention St. Louis so I'm curious as to how close you are to me. I might have some suggestions depending on where you live.

I'm in a small town between Joplin and Springfield, MO. 
Close to you? 



#81 emmaluv+2more

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Posted 11 May 2017 - 04:55 PM

Darn it. I'm in St. Louis, but know of free resources in adjacent counties. I was hoping you were a bit closer ☹️
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#82 Southern Ivy

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Posted 11 May 2017 - 06:00 PM

I YES the np will care about the situation around her birth. It could be significant. I would start looking more at her development and motor planning. Collect more dots on things like when she learned to walk, crawl, how she crawled, does she point, how she does on the playground or with typical child games involving movement, etc. 

Crawling was normal timeline and she did the "normal" crawl. Walking - I think she started around 15 mos. Really talking (not just mama or dada) was around 15-16 mos. 
She does really well on play grounds. She can navigate those well. She loves swings and slides. She is a monkey at home and climbs on EVERYTHING. 
Hand eye coordination for things like catching a ball is pretty shoddy, but with other games, I'm not really sure. 

 

Who mentioned SLP? She has speech issues? Needed therapy? If so, has that testing been updated? They look not only at articulation but also language. The np can run language too. It just gives you lots of dots.

 

How is her speech now? My ds has apraxia, and that can be caused by oxygen deprivation. It would be an explanation for problems that don't resolve with traditional speech therapy, etc.

I requested a speech referral. She was delayed on initial g/k sounds. She had therapy for a year, graduated out this past December. Her SLP checked her for her other sounds at that time (still struggled with y, r, etc.). She was borderline developmentally appropriate at that time, but she was stimulable for those sounds, so we did not continue. Her only issue now is "th" which is within developmental guidelines. 
Testing hasn't been updated since the initial evaluation - I was going to talk to the SLP about all of this, but she's moved since then. (The other SLP was not in the office that day and I just haven't called back.) 

 

 

Any time you're having the discussion on what is bloom time vs. what to intervene on, it's significant. You're right to take this seriously. It's not that there might be some dyslexia. It's that the phonological processing problems PLUS the motor planning issues PLUS the developmental delays are significant. That's why you're going to a np and not waiting. If it were only dyslexia, no motor planning issues, no developmental questions, you might want till later, no biggee. With that list of what you're seeing, you're right to pursue it.

This means a lot. I struggle with not wanting to be "that mom" - the one who overreacts and thinks something is always wrong with her kid. I've had a niggling feeling for a few months, but nothing really stood out as "this is an issue" until this past December. So, I've often wondered if I'm just over reacting. It's reassuring to have you all say that there are red flags (as weird as that sounds. haha) 

 

Have you seen the post about waiting on evals and likening it to a cake? I'll try to find it. Nothing like a little controversy. :D Seriously, it's something people struggle with, have opinions on, etc. Information is your friend. What you do with it is your choice. 

SaveSave

 


Edited by Southern Ivy, 11 May 2017 - 06:01 PM.


#83 Southern Ivy

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Posted 11 May 2017 - 06:02 PM

Darn it. I'm in St. Louis, but know of free resources in adjacent counties. I was hoping you were a bit closer ☹️

Nope. We're in podunk. lol Hoping to eventually move closer to Springfield, but for now, we just drive...and drive...and drive. (It's really only an hour, but some days, it feels longer.)



#84 OhElizabeth

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Posted 11 May 2017 - 09:13 PM

I would expand your drive for 3-4 hours to get good evals. It will definitely be worth it. Don't go local. Drive to the biggest city within a sane drive. 

 

The ball catching is interesting. My ds has some mild praxis (not enough to get a DCD diagnosis by any means) but he's really great with balls. Ball catching can be convergence. That's totally within the realm of the dev. optom. I know you said somebody didn't like your local guy, but I'd still consider him. Prism glasses are a normal thing for them to prescribe. You could simply say no. He might not even suggest them. Our place uses prism glasses but only for older kids and situations where warranted. At that age they wouldn't bother. I just think you might have talked to someone with a grudge or somebody who didn't know much. I would definitely want that convergence checked. If not that dev optom, find a different one.

 

It's so fast to get into a dev. optom. and costs less than $100. It would be really interesting to get that done. So much of what you're doing with Abeka is linked to vision. You're not isolating out what she can do when it's auditory.

 

I'm just thinking out loud with you. If you do the local CTOPP, get her eyes screened, and get an OT eval, you have a good chunk of info. The OT can catch the motor planning stuff the np would catch. The CTOPP will tell you if her phonological processing is intact. I'm just saying you'd know how pressing it is to then go spend the $$$$$ for the np eval. If OT and CTOPP show nothing, then I wouldn't be bothering with the np eval just yet, kwim? And if you do the CTOPP locally, you can take that score page to the np and let him add it to his mix. It would be a way to screen and spend $100 before you spend $2-3k, kwim? 

 

But that's just thinking out loud, thinking about options. I don't know what you're seeing. You know what you're seeing. It really depends on your gut, what you see the most of, how pressing it is. And of course you can talk it through with the np and see what they say. 


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#85 Southern Ivy

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Posted 11 May 2017 - 09:26 PM

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

Early warning signs: (This list includes warning signs for conditions other than simple learning disabilities 

Preschool: Look for clusters of symptoms </i > 

Social differences: if your child does not have many friends, does not seem to know the rules for playing, if other kids don t seem to like your child, or if there is not normal eye contact. Other children are often a very accurate indicator of differences. 

Language differences: delayed talking (it wasn't MAJOR, but she only said mama or dada until about 15 mos.) talking in stock phrases, using an odd tone of voice, echoing what people say, inability to follow multi-step instructions, flat tone of voice when singing or reciting 

Physical differences: toe walking, chronic constipation or diarrhea, chronic difficulty falling or staying asleep, frequently slumps or falls off chair when sitting at the table (may look like this is on purpose), physically clumsy, toe walking, difficulty with gross motor skills, high pain tolerance 

Difficulty with fine motor skills (not a ton, but good gravy, her cutting skills are atrocious)

Over sensitivity to light, sound (she HATES loud sounds, but doesn't mind making them constantly. Drives me nuts. She told me I was hurting her ears when I was singing normal range in the car, but tonight, she was screeching like a dying cat! "because it sounds pretty"...uhh...no.)  clothing (tags, etc), aversion to several smells, picky eater 

Stimulus seeking: impulsive, hyperactive, always into mess, likes swinging, spinning, makes constant noise (depends on the day - she wouldn't shut up tonight! haha) , etc. 

Emotional/behavioral: behavior is not responsive to normal disciplinary measures, high level of anxiety, hysteria, crying, and temper outbursts 

If there is a cluster of these flags seek help immediately and keep seeking help until you get an explanation that accounts for your sense of what s not right. Some conditions can be completely remediated , without drugs, if treatment is pursued early enough. 

Preschool readiness: 
Lack of awareness or enjoyment of rhyming, does not know nursery rhymes even if you read them to her, lack of interest in writing own name, messy coloring (scribbling), lack of interest in oral memory games (I m going on a picnic and bringing a . ) or visual memory games (concentration), cannot find visual similarities in like things , still talks baby talk or transposes sounds in words: aminal, emeny, aks, pacific (specific), stumble over sounds trying to pronounce new or long words. (These are all indications of learning disabilities) 

Beginning instruction: 
Has difficulty with associating letters of the alphabet with sound, difficulty with phoneme awareness (cannot rhyme, cannot tell you how many sounds are in dog; can t tell you what stop without the s sound would be: See Reading Reflex or Overcoming Dyslexia for short list ), grossly deficient motor skills (not just a dislike of writing, but very distorted letters, drawing ability behind other children his age), can t get 1:1 correspondence needed to count, etc. (These are all indications of learning disabilities) 

 

 

Geez. I should just highlight the whole thing!! lol 



#86 Storygirl

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Posted 11 May 2017 - 09:26 PM

I understand what you mean about it being nice to hear other say there are red flags. I felt a tremendous sense of relief when I had someone else say that for the first time. I had my kids tested for entrance into a private school, and the tester said, "I think your daughter has dyslexia." I had been saying and thinking that for years by that point but had had no one else confirm my worries. I was GLAD she said that, even though it seems like bad news.

 

It was that same experience and same person who encouraged us to get further testing for DS13.

 

There were some things about that experience that were painful -- the school refused to admit one of my kids, so we didn't enroll any of them -- but it was a relief to finally have someone confirm that my mom worries were not exaggerated.


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#87 Southern Ivy

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Posted 11 May 2017 - 09:34 PM

I would expand your drive for 3-4 hours to get good evals. It will definitely be worth it. Don't go local. Drive to the biggest city within a sane drive. 

 

The ball catching is interesting. My ds has some mild praxis (not enough to get a DCD diagnosis by any means) but he's really great with balls. Ball catching can be convergence. That's totally within the realm of the dev. optom. I know you said somebody didn't like your local guy, but I'd still consider him. Prism glasses are a normal thing for them to prescribe. You could simply say no. He might not even suggest them. Our place uses prism glasses but only for older kids and situations where warranted. At that age they wouldn't bother. I just think you might have talked to someone with a grudge or somebody who didn't know much. I would definitely want that convergence checked. If not that dev optom, find a different one.

 

It's so fast to get into a dev. optom. and costs less than $100. It would be really interesting to get that done. So much of what you're doing with Abeka is linked to vision. You're not isolating out what she can do when it's auditory.

 

I'm just thinking out loud with you. If you do the local CTOPP, get her eyes screened, and get an OT eval, you have a good chunk of info. The OT can catch the motor planning stuff the np would catch. The CTOPP will tell you if her phonological processing is intact. I'm just saying you'd know how pressing it is to then go spend the $$$$$ for the np eval. If OT and CTOPP show nothing, then I wouldn't be bothering with the np eval just yet, kwim? And if you do the CTOPP locally, you can take that score page to the np and let him add it to his mix. It would be a way to screen and spend $100 before you spend $2-3k, kwim? 

 

But that's just thinking out loud, thinking about options. I don't know what you're seeing. You know what you're seeing. It really depends on your gut, what you see the most of, how pressing it is. And of course you can talk it through with the np and see what they say. 

I haven't cancelled the dev optom, and was considering still going. I think I will, just to see. I see my doctor next week, so I may ask her for an OT referral and just get that done as well. 
You make some good points. I'll be talking to my husband about all this when we finally have a chance to sit down and talk. I definitely don't want to spend the $$ if the NP is just going to say  "come back in a year or two".  Kansas City and St. Louis are decent drives, as is Tulsa. Little Rock, AR is a bit further, but it's a doable drive as well. I'll definitely be looking around and seeing what/who is out there. 



#88 Southern Ivy

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Posted 11 May 2017 - 09:36 PM

I understand what you mean about it being nice to hear other say there are red flags. I felt a tremendous sense of relief when I had someone else say that for the first time. I had my kids tested for entrance into a private school, and the tester said, "I think your daughter has dyslexia." I had been saying and thinking that for years by that point but had had no one else confirm my worries. I was GLAD she said that, even though it seems like bad news.

 

It was that same experience and same person who encouraged us to get further testing for DS13.

 

There were some things about that experience that were painful -- the school refused to admit one of my kids, so we didn't enroll any of them -- but it was a relief to finally have someone confirm that my mom worries were not exaggerated.

What got this all started was a tour of a private school and them wanting her to know her ABCs by January of this year for their (crazy early) Kindergarten evaluations. If she didn't know them, she wouldn't get in. I freaked and was ticked off at the preschool for "not teaching her"..but I'm the parent, I should have been working on it as well. Total mom guilt there, but it started the ball rolling and for that I'm thankful. 



#89 OhElizabeth

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Posted 11 May 2017 - 09:52 PM

Look, it's not normally THAT hard to learn their ABCs. Kids with as much interaction as yours learn them with little exposures. They watch preschool videos, do an alphabet puzzle from Dollar Tree, coloring books, and bam they know them. It's just a nothing. 

 

There are OTs who specialize in sensory issues. You've got significant, significant issues going on there. You're going to need that OT eval, even if you do pay $$$ for the np. That's why I'm saying just start somewhere. 


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#90 Southern Ivy

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Posted 18 May 2017 - 10:38 AM

Yesterday was rough - I was calling offices to see what tests they do and who they test. Everyone either said she was too young or they didn't take our insurance. All were at least a 3 month wait - which I expected. Still, all the frustration left me crying and just praying for direction with this whole thing. 

Anyway, a friend had recommended a neuropsych she has taken her 3 girls to (newly adopted, lots of trauma, ADHD, ODD, RAD, plus learning disabilities). She loves this np, so I called yesterday and left a message to schedule an appointment. 

Y'all, it is an absolute miracle - the NP called me today to schedule an appointment. She is currently booking for October - good grief - 6 months out!! 
BUT.....she had a cancellation right before she called me....FOR NEXT WEEK!! 

Even better, she takes our insurance. 

I was doing some major ugly crying when I got off the phone. 


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#91 emmaluv+2more

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Posted 18 May 2017 - 11:50 AM

Yesterday was rough - I was calling offices to see what tests they do and who they test. Everyone either said she was too young or they didn't take our insurance. All were at least a 3 month wait - which I expected. Still, all the frustration left me crying and just praying for direction with this whole thing.

Anyway, a friend had recommended a neuropsych she has taken her 3 girls to (newly adopted, lots of trauma, ADHD, ODD, RAD, plus learning disabilities). She loves this np, so I called yesterday and left a message to schedule an appointment.

Y'all, it is an absolute miracle - the NP called me today to schedule an appointment. She is currently booking for October - good grief - 6 months out!!
BUT.....she had a cancellation right before she called me....FOR NEXT WEEK!!

Even better, she takes our insurance.

I was doing some major ugly crying when I got off the phone.


That's awesome! The cost and time definitely make the whole process even more overwhelming than it already is.

Did you call your insurance to make sure they cover the testing? Some do and some don't.

#92 Southern Ivy

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Posted 18 May 2017 - 11:56 AM

That's awesome! The cost and time definitely make the whole process even more overwhelming than it already is.

Did you call your insurance to make sure they cover the testing? Some do and some don't.

I did and they do. :D 

I saw our regular doctor yesterday and gave her the rundown of what I was doing. She was so supportive and even got me names of others she had worked with. I mentioned ADHD and she just chuckled and said "Well...she does move around more than any other child I see...and I don't see her a lot."  :lol:  :lol: 
Glad that part isn't just in my imagination. haha 



#93 Zinnia

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Posted 23 May 2017 - 09:01 AM

That was what clued me in that my youngest had *something* going on, though it was from ages 5 to 7. He would know a letter name/sound, and the next day or a few days later, not know it. At all. Even the same letter after two years.

He could, even when he started learning them, sometimes tell me the letter if I said the sound (or could point to it, draw it, etc.), but if I asked him "what sound does F make" he could not tell me (even if he could point to an F when I made the sound). Some letters he could do the other, name the sound if I asked, but not point it out if I gave him the sound. Some he could do neither, and sometimes what he could do would flip flop back and forth.

In his case he was diagnosed with a pretty severe form of dyslexia, along with very slow processing speed, and very poor working memory (and a host of other compounding factors). Your dd may have just simple dyslexia, or just might not quite be ready yet, but it's something I would look into.

This was our experience, too. In that4 year old year, I said that it was like his brain was a sieve--I taught phonics, and they fell right back out. He also struggled with pronouns (it took a year of targeted SLP work to get away from "Me like cookies"), and though he could memorize lists of words and fake it, he couldn't rhyme nonsense words at all.

Edited by Zinnia, 23 May 2017 - 09:01 AM.

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#94 Southern Ivy

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Posted 24 May 2017 - 05:26 AM

Well, today's the day. Still nervous that they're going to tell me I'm making it all up. haha 
But, I'll give you an update later tonight. (Taking her down to my mom's after the testing, so I won't be back for a bit.)


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#95 OhElizabeth

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Posted 24 May 2017 - 06:57 AM

Good luck! They're not going to think you're making it up, mercy. It's just a question of what they'll find and whether they can identify things yet. It just depends what is going on. 

 

We'll be interested to hear how it goes! :)


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#96 Southern Ivy

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Posted 24 May 2017 - 07:34 PM

I am so emotionally drained, it's not even funny. Still processing everything.

During our pre-evaluation visit, and based on a 30 second hello with my daughter, the neuropsych said "Based on what I can see, this might just be a case of above average parents viewing a normal child. But, we will test out the theory and see."  :rofl:  She was eating her words by the end of it. 

Within 10 minutes of trying to conduct the WPPSI-IV (preschool IQ test), she looked over at me and said "severe ADHD". Honestly, that was the most excruciating experience, watching my child act worse than she has ever acted and not being able to do a thing about it. I wanted to wring her neck. I THINK I may have stacked the deck in favor of this by not thinking and letting her have a coconut slush from Sonic for lunch. That, on top of being tired, and we had the perfect ADHD storm. 

So, long story short, the child definitely has ADHD and pretty bad. The NP said she was one of the worst cases she had seen and that the bad behavior (acting like a baby, screaming answers, not listening, and goofing off) was being reinforced somewhere - I guarantee it's at the preschool, because she doesn't act like that at home. 

She also said that there is most definitely a processing disorder somewhere, somehow. She said because of dealing with the attention issue today, she's not entirely sure where the breakdown is. She told me to go ahead and keep the eye appointment with the developmental optometrist (the one in my town was a joke. Total waste of money). She said to ask for visual perception and short term visual memory testing. I mentioned having the CTOPP done and she said that that would be wise as well - she was hinting about an animal puzzle and said "It's a b-b-b...." and kiddo said "PIG!"

Her overall IQ score is worrisome. She has quite a few categories below average, but she wants to see us in a year (ON the ADHD meds) to see how things are progressing. She thinks a lot of the issue is stemming from her (severely lacking) ability to pay attention, but wants to make sure. 
She highly recommended holding her back a year or homeschooling her as she is not ready behaviorally nor academically for a classroom setting. So we will be homeschooling. 


On the vision tests and the CTOPP, would you all suggest waiting until she is on ADHD meds before doing those tests? I'm thinking that is probably wise, but wanted to get your thoughts. 

 


Edited by Southern Ivy, 24 May 2017 - 07:39 PM.

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#97 OhElizabeth

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Posted 24 May 2017 - 08:51 PM

Get your ped to refer you for behavioral help. You'll go through the ped for meds anyway, but there's a lot of data showing that getting behavioral help before and with the meds is really good. There's actually data supporting before. Around here, it takes a couple months to get an appt with the ped, do the testing he wants, have another appt where you talk results and scrips. So during that time you could begin behavioral supports. 

 

I think it will come together naturally as far as the timing. It will take a while to get in more evals. What is the psych saying on the CTOPP? The psych wants to do it or wants you to go somewhere else? I'd just roll with the psych's recs. 

 

Did she encourage you to pursue an OT eval for retained reflexes and also audiology? They won't run a full SCAN3 for APD at this age, but what I would suggest you do is hit audiology with the person you WANT to do the SCAN3. Around here they'll run it at age 7. So that way you get the discussion going now, see if her regular hearing is normal, let them screen whatever they can, and get a sense of whether you want the full SCAN3 done when she hits 7. And yes, I would want her on meds for the audiologist. Ditto for vision and the other stuff. 

 

Is the preschool negotiable?

 

Adding: You must feel relieved to have someone finally BELIEVING you that something is going on! Some things just take time to unfold. It feels like you're watching a train wreck, wondering why it is you can SEE it but nobody DOES anything definitively about it till x age. So you're right to be proceeding now, and you'll just know you're on the front end of some things.


Edited by OhElizabeth, 24 May 2017 - 08:52 PM.

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#98 Southern Ivy

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Posted 24 May 2017 - 09:33 PM

Get your ped to refer you for behavioral help. You'll go through the ped for meds anyway, but there's a lot of data showing that getting behavioral help before and with the meds is really good. There's actually data supporting before. Around here, it takes a couple months to get an appt with the ped, do the testing he wants, have another appt where you talk results and scrips. So during that time you could begin behavioral supports. 

Ok, I will talk to her about that. We'll get in next week more than likely (or with the nurse practitioner who sees dd more often). 
What does behavioral help entail? 
The neuropsych is sending her written report to us and to the doctor, so she may want to wait on that before prescribing meds, but we'll see. 

 

 

I think it will come together naturally as far as the timing. It will take a while to get in more evals. What is the psych saying on the CTOPP? The psych wants to do it or wants you to go somewhere else? I'd just roll with the psych's recs. 

She does not do the CTOPP, so I'll go to the dyslexia center to have it done. It's only $50. 

 

Did she encourage you to pursue an OT eval for retained reflexes and also audiology? They won't run a full SCAN3 for APD at this age, but what I would suggest you do is hit audiology with the person you WANT to do the SCAN3. Around here they'll run it at age 7. So that way you get the discussion going now, see if her regular hearing is normal, let them screen whatever they can, and get a sense of whether you want the full SCAN3 done when she hits 7. And yes, I would want her on meds for the audiologist. Ditto for vision and the other stuff. 

DD had a full hearing test done by the audiologist after she started speech, so maybe just over a year ago. She did great and her hearing was fine.
Do you think she still needs another one? 


The neuropsych mentioned that she could not understand dd sometimes. She did suggest going back to the SLP and having her reevaluated. I can understand her fine, but I asked my mom, sister, and friend (who had dd at her house for a few hours the other day) if dd was hard to understand. They said that they do have to really listen to understand her or to ask her a few times. 
I have not noticed, but then again, I'm with her the most. It's not that she says the sounds wrong, but there's something off in how she's talking. 

I am definitely going to have her on meds for the CTOPP. The eye doctor does vision therapy and has a whole page on ADD/ADHD and vision therapy. So, I'm going to call them and see what they would prefer, I think. 

 

Is the preschool negotiable?

What do you mean? As far as her going? I'm still working 40 hours from home PLUS another 20 hours teaching online. My first job is going down to 20 hours, so as soon as that goes down, we're going to bring her home. I just can not get anything worth anything done if she's home and with this project is pretty important (ie: it will secure a consistent line of work with this company). So, as soon as that goes down (I'm thinking probably 2, MAYBE 3 weeks), then we'll have her home. Definitely home by July. It's not ideal, but it's how we have to work it right now. 
 

Adding: You must feel relieved to have someone finally BELIEVING you that something is going on! Some things just take time to unfold. It feels like you're watching a train wreck, wondering why it is you can SEE it but nobody DOES anything definitively about it till x age. So you're right to be proceeding now, and you'll just know you're on the front end of some things.

Truthfully, I would not be anywhere near this far along if it wasn't for you and the other girls on here! 

 


Edited by Southern Ivy, 24 May 2017 - 09:34 PM.

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#99 OhElizabeth

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Posted 24 May 2017 - 09:45 PM

If she has been to the audiologist in the last year, that's probably enough. At some point you could consider running a screening for APD like the SCAN3 screening portion, but that's more like age 7. It *can* be an explanation behind this level of extreme behavior. That's why I am harping on it. The more extreme the behaviors, the more you want to look at ALL the processing and ALL the things. It's not gonna be probably one thing.

 

Your psych is correct that she should be 100% intelligible by now (check, but I think that should be 100% at age 5) and that it's intelligibility with STRANGERS, not with people who are with her all the time. 

 

How was her behavior in speech therapy?

 

Might be good to tighten up the preschool behavior plan, since it sounds like she's going to be there a while. Is it kinda montessori or low structure? She might benefit from a higher structure environment.

 

Gymnastics is AWESOME for these kids. If she's not in it, you could try to get her in pronto. Or put her in a Y preschool where they'll have her swimming every day. This is the kind of dc who will do 3-4 hours of sports a day and not blink an eye. My ds is like that. He can do 3 hours of soccer with a professional camp and then turn around and do 3 hours of team gymnastics. He just goes and goes. You want to get her in with a community of people where she's NORMAL, and sports are going to be it. Gymnastics will be lots of movement, lots of reinforcement, and it's going to work on her personal discipline. 


Edited by OhElizabeth, 24 May 2017 - 09:46 PM.

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#100 Southern Ivy

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Posted 24 May 2017 - 10:09 PM

If she has been to the audiologist in the last year, that's probably enough. At some point you could consider running a screening for APD like the SCAN3 screening portion, but that's more like age 7. It *can* be an explanation behind this level of extreme behavior. That's why I am harping on it. The more extreme the behaviors, the more you want to look at ALL the processing and ALL the things. It's not gonna be probably one thing.

 

Your psych is correct that she should be 100% intelligible by now (check, but I think that should be 100% at age 5) and that it's intelligibility with STRANGERS, not with people who are with her all the time. 

 

How was her behavior in speech therapy?
Kelsey (the SLP) had to really build a rapport with her. She moved a lot, but she worked hard for Kelsey. 

 

Might be good to tighten up the preschool behavior plan, since it sounds like she's going to be there a while. Is it kinda montessori or low structure? She might benefit from a higher structure environment.

I have a feeling a behavior plan won't be implemented much at school. I may just make the decision to have her go 2 more weeks, then pull her out. It is low structure. Also, I'm seeing that the teacher is incredibly lax (due to the set up, I never really saw classroom behavior, etc., but I've been trying to pay more attention lately). Unfortunately, there are no other preschools in this area that stay open late. They are all out for summer. 

There is also a boy in the class who is consistently worse than dd. To the point my parents saw him at a program and Mom immediately said he was ADHD. Even my dad commented. A lot of dd's actions and words and talking like a baby started when he moved up into her class. I'm hoping that by removing her from that situation, some of the behaviors will remedy due to lack of exposure. 
 

Gymnastics is AWESOME for these kids. If she's not in it, you could try to get her in pronto. Or put her in a Y preschool where they'll have her swimming every day. This is the kind of dc who will do 3-4 hours of sports a day and not blink an eye. My ds is like that. He can do 3 hours of soccer with a professional camp and then turn around and do 3 hours of team gymnastics. He just goes and goes. You want to get her in with a community of people where she's NORMAL, and sports are going to be it. Gymnastics will be lots of movement, lots of reinforcement, and it's going to work on her personal discipline. 

DH wants her in swim lessons before anything else. So, that's first on the list.
I have told him that she does need to be in something that helps her energy AND gives her something to be good at.

DD wants to take ballet and asks about it a lot. Would ballet be ok for her?