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On January 9, 2019 at 6:11 PM, lewelma said:

He told me before christmas that he wants to get independent on math like he is in violin, so he does know what it looks like and what it feels like, and he wants to be that way for other subjects! 

This is a normal part of intervention work here in the US to want them to have some portions they do with someone and some portions they do independently. Independent work is not at instructional level.

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On January 8, 2019 at 2:29 PM, lewelma said:

I like the idea of using only a portion of the day to work fast, rather than pushing him all day.

Fwiw, I would not do this.

On January 8, 2019 at 2:29 PM, lewelma said:

speed reading drill daily.

Your child needs fluency work??? I don't see the point in this. Is there evidence (ie. is it an evidence-based practice) that doing fluency drills and pushing wpm will improve processing speed? Look for the data. There's actually data that it backfires, that working on fluency and speed excessively increases errors. I'm not sure I have a study to whip out, but it's stuff I've read about in my reading on reading intervention. I'm not sure it's an EBP for what you're wanting.

When you're asking what can alter processing speed, do research on this. There will doubtless be studies, so look for them.

On January 9, 2019 at 3:49 PM, lewelma said:

DS is a born leader. His charisma is his best trait to the point that people have commented on it since he was 4. He is an empath (which is actually a problem at times as he knows stuff he is not supposed to know), and is extremely socially adept.

You're making some assumptions here. I don't know him, but I'm just pointing out you're making assumptions.

On January 9, 2019 at 5:01 PM, lewelma said:

I often feel like my ds just doesn't really want to do his school work. He would rather read and play with his friends. I think in his ideal world he would do about 2 hours of school work to keep his mind active and fill the rest of his day with activities.

I agree with you that it's noteworthy when a dc has been in a highly stimulating environment and clearly has a bright IQ and is not engaging. I think the language testing would be interesting at this point, because it's a piece it doesn't sound like you've had and it might explain a lot. It's kind of hard to get good language testing, but it can be done. Not a stupid screen like the CELF but some that are more detailed like the CELF-Metalinguistics, TNL (test of Narrative Language), SLDT, TOPS, etc. Dysgraphia is a really vague diagnosis that isn't tied to a clear thing. I'm sorry, but I've read explanations 20 ways to Sunday and it's not. So they aren't explaining whether it's the convergence of language and motor or what, just that it clearly isn't working so they diagnose. It doesn't tell you how you could tease apart the components and get things working better.

On January 9, 2019 at 6:11 PM, lewelma said:

Writing is in *everything* except violin.

Or you could say LANGUAGE is in everything, and that's where I'm suggesting you could dig in. If it's only the motor planning that is the problem, then scribing or dictation/tech solves it. But it seems like more is going on. 

Did he ever have a stage where he did self-directed writing? I'm just curious. Like my dd had a stage where she would write recipes. My ds has done some with making signs, lists, and maps. Sometimes the skills come together just enough that you see this comfort and blossoming. Sometimes when you BACK OFF writing, it gives them the chance to funnel their energy into this self-driven writing. You then can go ok how can we detach writing from the academics and maybe do language with academics but decrease writing to maybe leave some of that energy in reserve for his own projects.

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On 1/10/2019 at 3:19 AM, lewelma said:

Yes. We have done many many kinds of pencils and pens with lots of different grips.  The frixon pens are excellent for him. 

 

Since settling on this stylus, has he had penmanship lessons with an expert? Someone who can move the student from drawing to writing while getting legibility and maintaining good physical form?  

Read and play with friends sounds like he is not engaging with the world, unless play is an ensemble with a goal.  Have you done career counseling? Motivation can come from defining a path to a goal. 

Edited by HeighHo
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23 hours ago, HeighHo said:

Read and play with friends sounds like he is not engaging with the world, unless play is an ensemble with a goal. 

And even then, how is the play? Did he go through the profiles on the social thinking communication profiles?

11 hours ago, lewelma said:

So before I do more testing or drugs or OT, I'm going to see where we are at. This child is working at level or a year ahead in all subjects (music, math, english, geography, science), so my initial post is still on my mind -- how much do I actually need to push?  Does he have to achieve to his talents, or can he work enough to be good enough for his own desires?

Like you're saying, someone has to be ready for it to happen. If you're not ready, you're not ready. Again I encourage you to question your assumptions. Kids can function ahead and then with meds it turns out they should have been functioning even MORE ahead. My guess is that's the case with him. As for what he wants, he won't know if it's not honestly put on the table and honestly presented, and he might not realize he wants it till he gets in with peers via online classes, etc. 

10 hours ago, lewelma said:

Here is a story he wrote a year ago at age 14 without any help from me at all. 

Does this also reflect his conversation? (very formal, unusual amounts of vocabulary, little perspective-taking, very in his head)

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I just want to thank you guys for all your insights.  I've copied this entire thread so I can go back an re-read it and give everyone's comments some deep thought.

My plan at this moment is to work with him for a month while thinking about issues you guys brought up, and then decide how to approach the future. 

 

 

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To go back to the original question, its really up to him.  My nondysgraphic kid in 4th decided he didn't want to get too far ahead as he valued his age peers, so he pursued nonschool interests.  He was so bored by 7th he gave that right up.   Youth orchestra introduced him to more peers, as did college and he's embraced living his life.  School to him was like swim club...progress at your individual pace, and race with people in your league if you need motivation.  I enjoyed your ds's story; mine was designing MMRPG game scenarios to entertain himself and it was a socially acceptable thing to do with his agemates at 9-15, nonthreatening to them academically.  His intellectual peers were found via music and sports; he left gaming when he realized he would rather design and had outdoor adventure in his back yard. My dysgraphic kid couldn't get the time to stay ahead, since the penmanship issues choked his output until he was in college..so he read and did the basic college prep stuff along with scouting.  My push was that they needed to be college ready, and here that is 2 years ahead of what the peers are doing in high school as well as topics such as personal finance and vehicle maintenance. So they did a lot of math and lit with me as well as living history and so forth via the BSA merit badge program. You set the goal, as you are exiting them into the adult world.  

Edited by HeighHo
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Have you read Dehaene's "Reading in the Brain?" Very good resource.  

http://www.unicog.org/biblio/Author/DEHAENE-S.html

He has video, too, here is a reading brain playlist that is mostly Dehaene: 

Read, Write, Type might help, it is for a much younger student but ties sounds to typing.

http://www.talkingfingers.com/read-write-type/

My syllables program might help, too, I would do some of the tests first, my nonsense word test, the MWIA 3 short, and my quick screen reading grade level test.  I also have a test that measures the speed of words with different numbers of blends, I'll put that in another post. Tests at end of syllables page: http://www.thephonicspage.org/On Reading/syllablesspellsu.html

And, an explanation of how I think you may be able to increase reading speed, will require a lot more repetition for you than most, but based on brain research.

http://www.thephonicspage.org/On Reading/Resources/Train your brain to read faster.pdf

 

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I see that the OP has edited the post. I am just now getting time to respond. I will be brief and vague in keeping with the deleted content  

OP, I read your question about there being a place in the world and the story written. That question was what drew me to this thread because after parenting my own child for 18 years who will never be a lot of things, including fast, my answer is a resounding YES! A valuable place. We need the unique gifts each of us bring to the table. We are not supposed to be the same. 

I am straight up humanities-oriented. I am the opposite of STEM except for a fascination with the field of medicine. 

As a lover of classic literature and as a skilled writer, I thought the story was gorgeous, rich, and amazing. I have taught high school English (literature and writing) and I have an editing background. I mentally edit works I read without even realizing, and I found myself reading with very few edits. My heart soared a bit. Really.

Just wanted to drop that in here. 

All the best to the hard-working mamas with special kids here. ❤️

 

 

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Here is the timing comparisons, if they are more than 10% different in speed from least to most sounds of each type, long or short vowel words, I have ideas and resources, and also if there are more errors with more sounds.

1. 2 sounds, short vowel  Time:_________________  # correct:___________________

am  in  up  at  it  if  on  add  off  an

 2. 3 sounds, short vowel  Time:_________________  # correct:___________________

sit  ram  fin  cup  sat  rat  fog  sad  hot  mutt

 3. Several sounds, short vowel  Time:_________________  # correct:___________________

 blink  clasp  fresh  drab  plush 

thrush  strict  snatch  stretch  brunch

 3a. Several sounds, short vowel  Time:_________________  # correct:___________________

 splash  stretch  sprint  shrub  thrift

sphinx  clash   splint  strength  thresh

 4. 2 sounds, syllables long vowels  Time:_________________  # correct:___________________

be   pi   my  go  me  he  no  hi   so   by

5. 2 sounds, words, long vowels  Time:_________________  # correct:___________________

me  day  eel  hoe  see high  sea   roe  say  oat

6. 3 sounds, long vowels, letter teams  Time:_________________  # correct:___________________

 moat  feel  rain  need  light  deep  mail  goat  wait  seen

 7. 3 sounds, long vowels silent e  Time:_________________  # correct:___________________

 Pete  mope  late  mite  hope  mane  gate  hide  home  wade

 8. 4 sounds, long vowels, letter teams  Time:_________________  # correct:___________________

 braid  steel  blown  drain  fright 

float  blight  plain  bright  drain

 9. 4 sounds, long vowels silent e  Time:_________________  # correct:___________________

 slope  grape  snake  drone  swipe

broke  flame  prone  flake  drape

 10. 5 sounds, long vowels letter teams  Time:_________________  # correct:___________________

strain  street   screen  straight  spray

spleen  strait  scream  stroke  squeeze

 

Edited by ElizabethB
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8 hours ago, texasmama said:

As a lover of classic literature and as a skilled writer, I thought the story was gorgeous, rich, and amazing. I have taught high school English (literature and writing) and I have an editing background. I mentally edit works I read without even realizing, and I found myself reading with very few edits. My heart soared a bit. Really.

Just wanted to drop that in here. 

Thanks for this. I read him your comments, and he was very pleased that you liked his story.  We've had a deep conversation, and I'm going to start a new thread. I have written down verbatim his thoughts on his dysgraphia and have his permission to post them.

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11 hours ago, ElizabethB said:

Here is the timing comparisons, if they are more than 10% different in speed from least to most sounds of each type, long or short vowel words, I have ideas and resources, and also if there are more errors with more sounds.

Are you saying I should dictate these to him for him to write? DS has no trouble with sounding out nonsense words.  His phonemic skills are excellent and he knows all the rules of English. The problem is automation. 

We have used Read, write, and type a couple of years ago.  It's a very good program.

Edited by lewelma
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11 hours ago, lewelma said:

Are you saying I should dictate these to him for him to write? DS has no trouble with sounding out nonsense words.  His phonemic skills are excellent and he knows all the rules of English. The problem is automation. 

We have used Read, write, and type a couple of years ago.  It's a very good program.

I am saying you should have him read them, and measure the speed and accuracy at which he reads each list of ten words.  Some of my students read 3a more than 10% slower than 1, and 10 more than 10% slower than 5; I have specific things I have my students work on if there is a significant slowdown with consonant blends in the mix.

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Ok, did a 3-4 letter word trial of nonsense words that I found on the internet.  He read them out loud at 85WPM. He thought that with a just a little bit a practice he could get it up to 100WPM. Is that some sort of goal?

As for your posted test, he was going so fast, it was really hard to get accurate times and make sure he had all the words right. So yes, all the words right (a couple he corrected immediately when he realized they were wrong).  All lists were between 4 and 6 seconds. They could have all been 5 seconds because there was quite some error in me looking at my watch while looking at the screen also. 

1-5 (and 3a): 6,5,5,6,4, 5

6-10: 4,5,6,4,6

This kind of speed reading does not seem to be a problem. 

 

Edited by lewelma
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17 minutes ago, lewelma said:

Ok, did a 3-4 letter word trial of nonsense words that I found on the internet.  He read them out loud at 85WPM. He thought that with a just a little bit a practice he could get it up to 100WPM. Is that some sort of goal?

As for your posted test, he was going so fast, it was really hard to get accurate times and make sure he had all the words right. So yes, all the words right (a couple he corrected immediately when he realized they were wrong).  All lists were between 4 and 6 seconds. They could have all been 5 seconds because there was quite some error in me looking at my watch while looking at the screen also. 

1-5 (and 3a): 6,5,5,6,4, 5

6-10: 4,5,6,4,6

This kind of speed reading does not seem to be a problem. 

 

Those are good scores, definitely no problems with blends!

I find that 100 WPM and close to 100% accuracy make for faster, more accurate reading and is necessary for most people who want to be able to read silently at 300 WPM.  If silent reading speeds are already 300+ WPM, I would not worry about it. If silent reading speeds are slower, automating the reading of nonsense words and syllables helps get their reading speed up. My students also usually come from an environment where they were not taught all the sound spelling correspondences or how to sound out multi-syllable words.

It seems like his problem is encoding and writing, not decoding.

Here is my nonsense word test, it has 25 nonsense words:

http://www.thephonicspage.org/On Reading/Resources/NonsenseWordTest.pdf

And here is my silent reading speed test: 

http://www.thephonicspage.org/On Reading/Resources/Reading speed tests.pdf

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Thanks for the links.  For the nonsense word test he found his tongue getting twisted up. Could he do them silently?  

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45 minutes ago, lewelma said:

For the nonsense word test he found his tongue getting twisted up.

That would fit with my suggestion that you're probably going to find some evidence of praxis (motor planning difficulties) as you dig in. It's possible to have them be subclinical (not getting a diagnosis of DCD or apraxia or dyspraxia) and yet still significant to the child.

The nonsense word test shared here is anecdotal, not research-based. If you want to know if fluency/wpm affects the things you're concerned about, research it for yourself. For standardized tools, you're looking at the TILLS, CTOPP, etc. An SLP can run those.

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The RISE is only $5 and has a research base. It will screen a whole bunch of areas, including vocabulary, syntax, etc. I doubt it will show anything on him. You can do a CTOPP through a psych or SLP.

Brookes Test of Integrated Language & Literacy Skills (TILLS)https://tillstest.com/  This is the TILLS, if you can find someone to administer it. It's going to hit a lot of your language areas with one test and has better sensitivity/specificity and stuff I don't know about than say the CELF. What you don't want is to let some psych run the CELF and call it done. That's a good way to miss issues.

Btw, he's 13? He has another bloom coming probably. See, but probably by 16 he's going to bloom again and make more leaps. I think if you offer a lot of tools, you'll find he gets some more maturity at that point to start to self-advocate and pull them together and use them. It's kind of the frustrating part about homeschooling, that about the time they become what we were hoping, they leave. 

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6 hours ago, lewelma said:

Thanks for the links.  For the nonsense word test he found his tongue getting twisted up. Could he do them silently?  

Part of it is being able to manipulate and say the sounds that quickly!  But, if he reads fast enough silently with normal text, I would not worry about it and would work on other things.  And, like PeterPan says, I've not normed them, but that is what I have seen with hundreds of students.

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He's 15. Time to update my siggy.  🙂

It will be interesting to see if I can find a decent psych. I worked with a student who had ADHD, ASD, anxiety, depression, and dyscalculia. Her mom sent me her evaluation and it was awesome.  I'm hoping I can tract down that psychologist!  This kid could not subtract 9-2. And when I asked her to, it took her 2 minutes with a tally chart to get 6.  I got her through 12th grade Statistics, so I know anything is possible with a kid who is keen! I know that I can help my ds. We have made huge strides, and 3 years is a long time especially in the teen years.  

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20 hours ago, lewelma said:

This kid could not subtract 9-2. And when I asked her to, it took her 2 minutes with a tally chart to get 6.  I got her through 12th grade Statistics, so I know anything is possible with a kid who is keen! 

That's some serious intervention!

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13 minutes ago, PeterPan said:

That's some serious intervention!

Yes. I won't be even a little bit humble.  I am very good at remediating math.  She was 16 when she could not do 9-2. She did not have one to one correspondence. The key with her was to have her do *everything* with a calculator.  She told me once, that using a calculator made her feel slow and stupid.  But I told her that the goal was to get it right in a reasonable period of time, and that modern technology is a wonderful thing. Our focus was on reading comprehension and figuring out how to code the questions into something she could get in her calculator. 

I currently have a kid who started with me at age 14, and I put her back into a 1st grade math program because if you gave her the questions 'you have 8 apples and I give you 6 more, how many do you have all together?" she could not answer you, and had no idea what to do.  I had her redo all the word problems for MUS grades 1 -4, and then after finishing them, I made her do them again but all mixed up.  Now, at age 17, she has just finished algebra 1 with a mark in the top 20% of students on a nationally normed test, and she is interested in being a data scientist.  Next year, she plans to take two math classes - statistics and algebra 2. She plans to finish high school at age 19. I love successes!! Some kids really just need one on one tutoring with someone besides a parent. 

Edited by lewelma
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10 hours ago, lewelma said:

I had her redo all the word problems for MUS grades 1 -4,

How did you get those? You own all the levels or you pulled them off their generators online? I knew they had computation problems but I didn't know they had word problems. We've put our energy into a lot of reality math (measuring, number sense, games that help him build number sense concepts, etc.) because he couldn't even identify 3 of something when he was 5/6. Actually the simple things, the language of it like "of" mystified him. We've had to make the words mean something. He's actually wicked bright, so we've been doing things with fractions and pattern blocks lately. I try to do some things that appeal to that brightness and some that slowly trudge on. In the past we've done work with word problems, using daily word problems warm-up type workbooks. I agree with you the language will definitely be an issue and that he'll have to use a calculator to move forward. I did get him doing 4 digit addition and subtraction, but that was just this year, like in the last 2 months. I haven't tried to do it in word problems and don't know if I would or not. I'm definitely not going to kill the enjoyment he has of math by telling him to do reams of computation, that's for sure. We basically did just two problems a day for a long time, making it fun and a game. Once I get through all the multiplication facts with him via Ronit Bird, then I'll need to do the same thing with mult/div. 

I have a generous disability scholarship for him, but we wouldn't be able to get everything done if we farmed it out. Besides, around here I don't know anybody intervening on math that well. Lots of OG, but not so much the math. Ds' needs have been really tedious, because his language disability was so woven in with it. I mean, it's pretty hopeless when your gifted 5 yo doesn't understand 3 cheerios. We've dug out of a lot of holes there. Also your experience speaks to the point our behaviorist makes too, that it's ok for us not to flip out over math and say he HAS to be doing a certain type of math right now. Like you say, for some kids, you can start at 14, work hard, and get somewhere. So I've been all in on number sense and foundation. 

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Yeah, I'm don't know if my daughter has a math disability.  I don't THINK so, but she does struggle.  My husband thinks she will do better once she gets to algebra, but I'm not so sure.  I am very concerned, because while the math instruction at the private school was very good and she was making progress, the math instruction at the public school appears to be a complete....mess, I will say.  But not really sure what options we have to fix that.  I wish I could send her back to the Catholic school from an educational point of view, but socially, she really likes public school so much better, and the fact that they have electives like art and typing and music are pretty huge.  

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3 hours ago, PeterPan said:

How did you get those? You own all the levels or you pulled them off their generators online?

The mom owned them.  The girl had been working her way through. 

Believe it or not, the mom was willing to hand copy Every. Single. Word. Problem into a notebook so the girl could do them.  Then after she did them all in order, the mom was willing to REWRITE all the word problems again in a mixed up order into a new notebook. Must have taken her days.  But she did not mind.  Oh, what we will do for our kids!

This mom's math was bad enough that if the girl wrote 0.1, and the answer said .1, the mom would count it wrong. I think she was thrilled to be able to contribute in some way.

This kid could do the algorithms, but had no ability to use math because she could not integrate math with language in any way. So when I started with her, she could do long division (at 14 she had gotten through grades 1-4 MUS), but she could not do even a very basic word problem like I wrote above. 

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15 minutes ago, Terabith said:

My husband thinks she will do better once she gets to algebra, but I'm not so sure. 

I have worked with a kid who learned fractions by way of algebra (different kid from the 2 I discussed above). He was in school, so we had to move in lock step with the class. I asked the mom to drop him a grade in math because he was about 4 years behind in math, but she said no. So I had to teach him algebra even through he had no knowledge of fractions, decimals, integers etc. He basically memorized the methodology of algebra and could manipulate without understanding.  Then one day, I actually tried something new -- I taught him fractions by way of what he already knew which was algebra. And he got it. Just like that.  We had many a laugh that he learned fractions through algebra.  My guess is that the numbers just got in his was of the concepts. Perhaps the numbers brought up a sense that he needed to relate them to real life, and the connection was just too hard.  Once I realized that he needed to learn in the exact opposite way that is always suggested (concrete to abstract), I started teaching him other things in an abstract way, and once he got them, I could link it back to the concrete level. And with this approach, in 3 years I got him from not knowing 1/10th = 0.1 to completing calculus. Basically, it was his dyslexia that got in his way. He never learned the maths facts (a lot of dyslexic kids can't), and just fell further and further behind.  I got him to learn them at age 15 (because often they can do it when they are older), and from there he made huge leaps. Oh, how strange is the mind!

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Yeah, my husband has a masters in physics.  He continually was failing elementary school mathematics, and his fourth or fifth grade teacher tried to get him to promise to not go into any mathematical field.  He is terrible at arithmetic, but he has an intuitive understanding of higher math.  I think my husband thinks our daughter is the same way.  Honestly, I don't think she is, but I hope so.  I think her difficulty is rooted in the fact that she has almost no working memory, which is not something that's going to get better as math gets more complex.  I have no idea how to remediate a kid who isn't really lacking in ability to understand the math but simply cannot hold more than one item in her memory.  Trying to get her to recite a list of numbers....she falls apart at TWO, and is completely incapable of reversing even two numbers given to her.  She doesn't understand time or money.  I think if I were homeschooling her, I could focus on application and word problems of arithmetic and give her a calculator.  I think with targeted work, we could get her functional with enough math to cope with daily life.  I don't think we can do that while trying to get her through public school curriculum, however.  I would be willing to try her in algebra, but I just don't see it as likely to be particularly relevant or meaningful for her, and despite her very high IQ, I am not convinced college is really what we should put our efforts towards.  Especially since there's no real effective therapy for working memory issues.  

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Terabith, I'd encourage you to get your dd a genetic workup.  She may need her B12 optimized for her genetic variations.

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1 hour ago, lewelma said:

The mom owned them.  The girl had been working her way through. 

Believe it or not, the mom was willing to hand copy Every. Single. Word. Problem into a notebook so the girl could do them.  Then after she did them all in order, the mom was willing to REWRITE all the word problems again in a mixed up order into a new notebook. Must have taken her days.  But she did not mind.  Oh, what we will do for our kids!

This mom's math was bad enough that if the girl wrote 0.1, and the answer said .1, the mom would count it wrong. I think she was thrilled to be able to contribute in some way.

This kid could do the algorithms, but had no ability to use math because she could not integrate math with language in any way. So when I started with her, she could do long division (at 14 she had gotten through grades 1-4 MUS), but she could not do even a very basic word problem like I wrote above. 

Wow, would have been easier to get ebooks and cut/paste, mercy. And so many companies now have word problem ebooks, mercy. 

1 hour ago, Terabith said:

Yeah, my husband has a masters in physics.  He continually was failing elementary school mathematics, and his fourth or fifth grade teacher tried to get him to promise to not go into any mathematical field.  He is terrible at arithmetic, but he has an intuitive understanding of higher math.

This is my ds. I was warned sternly by a psych NOT to teach him like he had a math disability but to teach him like he's math gifted. He actually is. Like as soon as he could do any single digit addition, he could do it with positive/negative numbers quite easily. He seems combinations and solutions and options so much more easily than I do, which is say something. He's really fun to work with in that sense. Dd was a more boring student to work with, just plodding and doing worksheets.

1 hour ago, lewelma said:

he needed to learn in the exact opposite way that is always suggested (concrete to abstract)

I hadn't thought about that, hmm. Yes, with ds I tend to introduce something via a card game, get the concept going, and then ask what it would look like if we wrote it. Then we go abstract, like you're saying, exploring more ways to write it. So in the same discussion we're going to hit exponents and algebraic notation, etc. and then work backward to simpler things. The more abstract things are easy for him, and the more simple things, driven by language, are hard. 

 

1 hour ago, Terabith said:

I have no idea how to remediate a kid who isn't really lacking in ability to understand the math but simply cannot hold more than one item in her memory.  Trying to get her to recite a list of numbers....she falls apart at TWO, and is completely incapable of reversing even two numbers given to her. 

Is she on ADHD meds? And they have before/after scores to show the meds are good voodoo? For some kids they're not. For some kids the meds will increase working memory. Also, it seems like she may be lacking strategies, because for that task they could use auditory working memory or visualization to get there. So if say she has some developmental vision problems, then she might be weak in the very area that would have most been her strength typically. My dd was like that. She was actually very VSL, but we didn't start seeing it till vision therapy removed the roadblocks. So you could get her eyes checked by a developmental optometrist, yes.

 

53 minutes ago, HeighHo said:

Terabith, I'd encourage you to get your dd a genetic workup.  She may need her B12 optimized for her genetic variations.

Just to keep the discussion going, what genes would she be looking for with this? I have getting my own b12 and folate and homocysteine on my list to get checked and I can't remember why. Terabith ran genetics on somebody I think, so if you have the genes or SNPs, she could check for them.

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I ran genetics on me, before I really thought through future ethical or privacy issues.  I’m now really nervous about the idea of running the kids, since my genetic stuff is out there and I didn’t use a fake name or anything. 

My daughter is not on ADHD meds.  When she was seven, she was dx as mild ADHD by the neuropsychologist, but I am not sure if even he really thought it was an accurate diagnosis.  She has certainly never shown attention issues in real life.   We tried a couple different nonstimulants and stimulants.  The nonstimulants really didn’t have any effect.  The stimulants did improve her processing speed and possibly memory, but they also made her high as a kite.  More or less manic. It was disturbing. Radical personality change.  That was the end of our forays into ADHD meds.  I’d be willing to look at them again when it’s time for her to drive, maybe.  But I honestly don’t think she has ADHD.  We did vision therapy and it was a disaster. Nine months driving two hours each way, with no improvement, and he told us she was going to be a juvenile delinquent.  Plus she has actual, diagnosed PTSD from trying to do the therapy.  It was awful.  I think she needed vision therapy, but doing it is possibly my biggest parenting regret.  I didn’t realize where the line between hard and impossible/ abusive was.  I kept making her do the exercises, trusting in the process, and I absolutely shouldn’t have.  I did basically bully her into learning to read, and I’m not sure I regret that, because she is a good reader and she was fighting me about everything in those days.  But the vision therapy...that’s off the table.  

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1 hour ago, PeterPan said:

 

Just to keep the discussion going, what genes would she be looking for with this? I have getting my own b12 and folate and homocysteine on my list to get checked and I can't remember why. Terabith ran genetics on somebody I think, so if you have the genes or SNPs, she could check for them.

 

Probably everything in the methylation cycle. And yes, she needs to work with someone knowledgeable of the methylation cycle and with B12 and how folic acid in the food supply can hide an actual B12 deficiency. amongst those with genetic variations.  I got lucky with 23andme uploaded to Genetic Genie, that was enough that my GP could rule out other things and give me a good rec.  My memory problems are gone....it was B12 deficiency due to folic acid poisoning and genetic variations..  Methyl B12 is now my best friend, as I can't get enough from diet.  The before / after difference is striking.  

Terabith, what you do in the meantime for little working memory is allow a formula card, or do an open book test. 

 

Edited by HeighHo
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17 hours ago, HeighHo said:

Genetic Genie

Ooo, haven't looked at that one! So did you run labs or just start? I have a mixed presentation, so methyls and I don't get along EVEN THOUGH I have the MTHFR defect. Well I can tolerate a bit. I think for my profile they have some alternate versions (adenosyl, I don't know what I'm talking about).

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29 minutes ago, PeterPan said:

Ooo, haven't looked at that one! So did you run labs or just start? I have a mixed presentation, so methyls and I don't get along EVEN THOUGH I have the MTHFR defect. Well I can tolerate a bit. I think for my profile they have some alternate versions (adenosyl, I don't know what I'm talking about).

 

I worked with my GP, who is a logical, experienced physician.  When we got down to scope or genetics, it was clearly more valuable to do genetics first.  Luckily we bingo'd and fortunately a solution is on the market.  I don't have an MTHFR variation and that's not the only place a variation can appear that impairs this complex cycle.  Of course diet needs to be considered first..is the patient getting enough B12, D, betaine, magnesium, B6, B2 and folate from diet, how much folic acid is ingested etc. No need to look for a genetic cause if the diet isn't supplying the needed nutrients.  And also, since ADHD was mentioned...have the food colorings red 40, yellow 5, yellow 6, blue 1 and blue 2 been eliminated from the diet? So much starts with eating well.

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6 hours ago, HeighHo said:

When we got down to scope or genetics, it was clearly more valuable to do genetics first.  Luckily we bingo'd and fortunately a solution is on the market.  I don't have an MTHFR variation 

So what was the test/company and what genes were they looking at? 

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